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Parents_Perceptions_of_Transi1.pdf
Walden University
College of Education
This is to certify that the doctoral study by
Elizabeth Strong
has been found to be complete and satisfactory in all respects,
and that any and all revisions required by
the review committee have been made.
Review Committee
Dr. Mari Vawn Tinney, Committee Chairperson, Education Faculty
Dr. Paul Englesberg, Committee Member, Education Faculty
Dr. Marilyn Robb, University Reviewer, Education Faculty
Chief Academic Officer
Eric Riedel, Ph.D.
Abstract
Parents’ Perceptions of Transition and Postsecondary Services for Their Children with
Disabilities
by
Elizabeth J. Strong
MBA, City University, 1999
MS, Western Oregon State University, 1990
BS, Akron University, 1987
Project Study Submitted in Partial Fulfillment
of the Requirements for the Degree of
Doctor of Education
Walden University
August 2018
Abstract
Students with intellectual and other disabilities who age out of transition programs or
graduate from high school may experience marginalization as young adults. There exists
scant literature on the perceptions of parents about access to employment and services for
their adult children with disabilities. The purpose of this qualitative study was to explore
how parents perceived educational services, financial burdens, social isolation, and lack
of access to employment for their children with intellectual and other disabilities. Critical
disability theory and transformational theory constituted the study’s conceptual
framework. The research questions concerned how parents perceived access to services
related to financial assistance, postsecondary education, employment, and vocational
consultation. The design was a case study with a purposefully selected sample consisting
of 5 parents from a Western U.S. state. Data sources included field notes, interviews, and
artifacts. A field log, newspaper articles, and interview transcriptions were gathered,
sorted, and categorized into themes. Results of the study revealed that employment gaps
for adults with disabilities decreased with better knowledge about disability strengths,
social capital, employer and employee diversity training, and competitive employment
opportunities. A position paper was developed based on study findings, which was
targeted to employers and included information on the reasons for a business to embrace
diversity in the workplace. Business leaders’ promotion of social enterprises that enable
community inclusion and financial independence for people with disabilities may result
in a positive paradigm shift towards equitable employment as a positive social change
outcome.
Parents’ Perceptions of Transition and Postsecondary Services for Their Children with
Disabilities
by
Elizabeth J. Strong
MBA, City University, 1999
MS, Western Oregon State University, 1990
BS, Akron University, 1987
Project Study Submitted in Partial Fulfillment
of the Requirements for the Degree of
Doctor of Education
Walden University
August 2018
ProQuest Number:
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2018
Dedication
I am dedicating this dissertation to Eric, Garrett, Niafo, Alex, Sarah, and Maria.
Your encouragement and love picked me up during the low points of the doctoral
journey. I will always be inspired by your persistence to make this world a better place
for all.
Acknowledgments
Dr. Mari Vawn Tinney, thank you for teaching me how to write in a scholarly
manner and for those kind notes of encouragement during the most challenging moments
of my life.
Dr. Paul Englesberg, thank you for teaching me how to be patient with the
doctoral writing process and how to appreciate rather than dread the experience.
Dr. Marilyn Robb, thank you for being the third set of eyes on the committee that
helped me prepare the dissertation for publication.
To the five participants, thank you for sharing your perspectives about transition
services. I have nothing but gratitude and respect for all of you.
i
Table of Contents
List of Tables ..................................................................................................................... ix
List of Figures ......................................................................................................................x
Section 1: The Local Problem..............................................................................................1
Introduction ....................................................................................................................1
Transition Programs ................................................................................................ 4
Current Changes to Vocational Rehabilitation Services ......................................... 6
Other Factors that Impact Access to Services......................................................... 7
Accessing Services Related to Aging out and Data Collection .............................. 9
Access to Services and Guardianship ..................................................................... 9
Other Factors Related to Accessing Services ....................................................... 10
A Gap in Practice .................................................................................................. 12
The Rationale for the Problem .....................................................................................13
Evidence of the Problem from the Professional Literature ................................... 13
Definition of Terms......................................................................................................17
The Significance of the Local Problem .......................................................................18
Guiding/Research Questions ........................................................................................21
Review of the Literature ..............................................................................................22
Theoretical and Conceptual Frameworks ............................................................. 22
Current Research Literature .........................................................................................25
Teaching Methodologies, Pedagogy, and Work Experience ................................ 27
Teachers Have Limited Knowledge of Resources ................................................ 29
Demographic Characteristics ................................................................................ 30
ii
Factors that Impacted Employment ...................................................................... 32
Family Expectations and Monetary Resources ..................................................... 38
Lack of Understanding of Transition Services Implementation ........................... 39
Parents as Primary Advocates ............................................................................... 41
Relevant Public Data............................................................................................. 43
Potential Implications for the Project ..........................................................................44
Summary ......................................................................................................................45
Section 2: The Methodology ..............................................................................................46
Qualitative Research Design and Approach ................................................................46
Research Design.................................................................................................... 46
Participants ...................................................................................................................49
Criteria for Selecting Participant .......................................................................... 49
Number of Participants ......................................................................................... 50
Sampling Procedures ............................................................................................ 50
Procedures for Gaining Access ............................................................................. 51
Researcher-Participant Working Relationship ...................................................... 53
Ethical Protection of Participants.......................................................................... 54
Data Collection ..................................................................................................... 55
Face-to-Face or Skype Conference Call Interviews ............................................. 56
Member Checking ................................................................................................. 58
Additional Data ..................................................................................................... 58
Evidence of Quality and Procedure of Data Collection ........................................ 59
Contents of Notes .................................................................................................. 59
iii
Role of Researcher ................................................................................................ 60
Data Analysis ...............................................................................................................61
Evidence of Quality and Data Analysis Procedures ............................................. 61
Summary ......................................................................................................................63
Data Analysis Results ..................................................................................................63
Process for Finding Data Results .......................................................................... 63
Findings........................................................................................................................64
Local Problem Data .............................................................................................. 64
Coding and Data Synthesis ..........................................................................................66
A Priori Information Themes ................................................................................ 66
Profile of Participants ..................................................................................................67
Profile of Acke and Abby ............................................................................................68
We are Family ....................................................................................................... 68
School and Agency Programs ............................................................................... 68
What Does the Future Entail? ............................................................................... 70
Profile of Bahar ............................................................................................................70
We Are Family ...................................................................................................... 70
School and Agency Programs ............................................................................... 71
What Does the Future Entail? ............................................................................... 72
Profile of Gabby ...........................................................................................................73
We are Family ....................................................................................................... 73
School and Agency Programs ............................................................................... 73
What does the Future Entail? ................................................................................ 75
iv
Profile of Rafiq ............................................................................................................76
We are Family ....................................................................................................... 76
School and Agency Programs ............................................................................... 76
What Does the Future Entail? ............................................................................... 78
A Summary of Outcomes from Interviews and Other Sources ...................................79
Charter School versus Public School Experiences ............................................... 80
Class Size .............................................................................................................. 81
Programs from Middle School to High School..................................................... 81
Educational Classification of Disability ............................................................... 82
Classroom Environment and Teacher Communication ........................................ 83
Preparing for College ............................................................................................ 84
Work Experience and then Employment .............................................................. 86
County, State, Federal, and Private Business as Partners ..................................... 87
Parent Advocate .................................................................................................... 89
Social Isolation...................................................................................................... 90
Monetary Concerns ............................................................................................... 91
Planning for the Future ......................................................................................... 93
Evidence of Quality .....................................................................................................94
Interpretation of Findings ............................................................................................95
Specialized Services and Placement ..................................................................... 95
Teacher Collaboration in the Community........................................................... 101
Aging out or Postsecondary Options .................................................................. 101
The Burden of Financial Support and the Potential for Social Isolation ............ 103
v
Dedicated Caregivers .......................................................................................... 106
Employer Expectations from Employees with Disabilities ................................ 111
Self-Confidence Gained from Employment ....................................................... 112
Additional Factors Related to Interviews: Communication, Social Capital, and
Tools ..............................................................................................................113
Summary of Themes ..................................................................................................115
Limitations and Discrepant Cases of the Findings ....................................................117
Factors Related to Competitive Employment of Individuals with Disabilities .........118
Sheltered Workshop Versus Competitive Work ................................................. 118
Competitive Work for Young Adults with Disabilities ...................................... 119
Section 3: The Project ......................................................................................................120
Rationale ....................................................................................................................120
Review of Literature ..................................................................................................121
Conceptual Framework ..............................................................................................122
A Community Example of the Conceptual Framework ..................................... 123
Foundations of Adult Learning and Transformational Learning ...............................123
Social Transformation ......................................................................................... 125
Colearning ........................................................................................................... 125
Mutual Respect ................................................................................................... 127
Coaching ............................................................................................................. 128
Summary of Transformative Learning, Colearning, and Coaching ...........................130
Literature Review of Competitive Employment Gains and Positive Outcomes
for Young Adults with Disabilities ................................................................130
vi
Changing Educational Trends ............................................................................. 130
Successful Predictors of Work Access for Young Adults with Disabilities ..............136
Social Capital in Less Populated Areas .............................................................. 136
Work Environment.............................................................................................. 138
A Change of Employer and Employee Perspective ............................................ 139
Work Performance and Quality of Life for Young Adults with Intellectual
Disabilities .....................................................................................................143
Employment Outcomes for Young Adults with a Mild Intellectual
Disability ................................................................................................. 144
Overcoming Workplace Barriers of Young Adults with Autism Spectrum
Disorder (ASD) ..............................................................................................144
Employment Outcomes for Young Adults with ASD ........................................ 145
Summary of Paradigm Shift Towards Employment of Individuals with
Disabilities .....................................................................................................146
Project Description.....................................................................................................149
Existing Supports ................................................................................................ 149
Roles and Responsibilities .................................................................................. 150
Potential Barriers ................................................................................................ 151
Needed Resources ............................................................................................... 152
Potential Solutions to Barriers ............................................................................ 152
Project Evaluation Plan ..............................................................................................153
Stakeholders ........................................................................................................ 154
Project Implications ...................................................................................................155
vii
Closing the Gap between Services and Access ................................................... 155
Applications of the Project.........................................................................................157
Future Research .........................................................................................................158
Section 4: Reflections and Conclusions ...........................................................................159
Project Strengths and Limitations ..............................................................................159
Recommendations for Alternative Approaches .........................................................159
Scholarship, Project Development and Evaluation, and Leadership and
Change ...........................................................................................................160
Scholarship .......................................................................................................... 160
Project Development and Evaluation .................................................................. 160
Leadership and Change ....................................................................................... 162
Reflection on the Importance of the Work ................................................................162
Conclusion .................................................................................................................163
References ........................................................................................................................165
Appendix A: The Project .................................................................................................203
Reasons for Businesses to Embrace Diversity in the Workplace ..............................203
Impact of the Laws.............................................................................................. 205
Our Company Would like to Offer you a Job ............................................................207
Business Learning Foundations For Success .............................................................208
Transformation of the Business .......................................................................... 209
Colearning Experiences at all Levels .................................................................. 209
Coaching ............................................................................................................. 210
Mutual Respect for All........................................................................................ 211
viii
Myths about Hiring an Individual with a Disability ..................................................211
Myth Busters ..............................................................................................................213
Is Hiring Individuals with Disabilities Applicable to Different Industries? ..............213
Fear of Additional Supervision and Loss of Productivity .........................................215
Additional Supervision ....................................................................................... 215
Productivity of Employee ................................................................................... 215
The Fear of Being Stuck Forever. ....................................................................... 215
Further Evidence for Hiring Individuals with Disabilities ........................................216
Marriott Corporation. .......................................................................................... 216
Utah Resources for Competitive Workplaces for Individuals with Disabilities ........219
Utah’s Model Employer Government Activities ................................................ 220
Resources for Businesses Owners Who Are Open to Hiring Individuals with
Disabilities .....................................................................................................222
Summary of Unrealistic Perception of Individuals with Disabilities ........................223
Conclusion .................................................................................................................223
Cited Works ...............................................................................................................224
Appendix B: Semistructured Interview Questions ..........................................................227
Appendix C: Dependability Strategy ...............................................................................229
ix
List of Tables
Table 1. Number of Parent Quotes in News Articles by Theme. ......................................67
x
List of Figures
Figure 1. The labyrinth of services ..................................................................................117
Figure 2. Three stages of transformation during colearning ............................................127
Figure 3. Coaching guidelines .........................................................................................150
1
Section 1: The Local Problem
Introduction
Young adults with intellectual and other disabilities who aged out of a transition
program or graduated from high school encountered obstacles when accessing services
from outside agencies, colleges, and employment organizations (Baker, 2013; Blacher,
Kraemer, & Howell, 2010; Canha, Owens, Simoes, & Gaspar de Matos, 2013; Carter et
al., 2013; Kerr, 2013). Reporters for a Utah newspaper in the local study area observed
that there were no guarantees or assurances of transition into state, federal, and nonprofit
services and employment for adult students with intellectual and other disabilities (Baker,
2013; Kerr, 2013). When adults with intellectual and other disabilities attended transition
programs or high school, their parents had at least seven hours a day where their
supervision was not necessary. The roles of parents of adults with disabilities changed
when their sons or daughters aged out of school-district transition programs or graduated
from high school, and, as a result, parents’ perceptions about access to school and
community services and employment changed because direct school-district transition
support was no longer available to parents.
In this study, I presented parents of young adults with intellectual and other
disabilities information about transition services and future employment for their young
adult children. Access to such information could result in a direct pathway of
employment and postsecondary education in local services between school districts,
outside agencies, and potential employers, thus empowering parents and children with
disabilities to freely pursue opportunities in their communities.
2
Most parents of adults with intellectual and other disabilities are managers of their
adult children’s employment and service options. After school-district transition services
or secondary education, the parents primarily managed service delivery for their young
adult children (Chambers, Rabren, & Dunn, 2009; Clegg, Ansorge, Stackhouse, &
Donlan, 2012; Grigal, Hart, & Migliore, 2011: Hendricks & Wehman, 2009). Davis and
Beamish (2009) researched the roles of parents of adults with disabilities and the
different events that could or could not take place following their children’s termination
from school-district transition programs and graduation from high school. Educators in
Utah and other western U.S. states conducted annual needs assessments and annual
reports about disability services. However, these needs assessments and annual reports
only included data from adults with disabilities services, state, federal, and nonprofit
agency-provider surveys (Chambless, McCormick, & Robinson, 2010; Colorado State
Rehabilitation Council, 2012; Harkin, 2012; Oregon Department of Human Services &
Vocational Rehabilitation, 2017; Utah State Office of Rehabilitation, 2011; Wilhelm &
Robinson, 2010). The investigators for these needs assessments and annual reports
excluded parents’ perspectives and the parents’ knowledge of management for service
delivery systems.
As part of the Individuals with Disabilities Education Act of 1991, the U.S.
federal government mandated annual individual education plan (IEP) participation from
parents of students with disabilities, teachers, and school administrators as well as
applicable state, federal, and nonprofit agency support professionals, family advocates, or
developmental disability caseworkers until a student turns 18 years old. The Utah state
3
annual report revealed a limited concentration on data from adults with disabilities due to
privacy laws and parent guardianship policies. These researchers also had time-
constraints and strict criterion guidelines established by the state of Utah.
Congress signed the Americans with Disabilities Act (ADA) into law in 1991.
The ADA (1991) included civil rights protections for individuals with disabilities and
guarantees of equal opportunities for public accommodations, employment,
transportation, state and local government, and telecommunications. Since the law’s
enactment, Utah moved from being a state with inaccessible sidewalks, buses, and
buildings to a state working to ensure access to all locations and activities for individuals
with disabilities (Harkin, 2012).
Conversely, the case was different for young adults with intellectual (persons with
an I.Q. of 70 or lower) and other disabilities due to their inability to gain total access to
employment or attend college (Baker, 2013; Balcazar, Kuchak, Dimpfl, Sariepella, &
Alvarado, 2014; Harkin, 2012; Kerr, 2013). For the past two decades, this element of the
ADA lagged behind the law's other successes. According to Canha et al. (2013), the
successes of family dynamics, economic status, community supports, and availability of
services affected transition outcomes.
In the next section, I describe some community supports and services for adults
with intellectual and other disabilities who attended transition programs or received
specialized support services in high school. I also describe Utah legislative changes that
could impact access to transition services for aging out and graduated adults with
intellectual and other disabilities. I also define other disabilities encompassed in the
4
definition of disability used in this study. These disabilities include autism spectrum
disorder (ASD), traumatic brain injury (TBI), hearing/deafness, visual impairment,
multiple disabilities, mental health, and specific learning disabilities.
Transition Programs
The federal government attempted to remediate this discrepancy regarding adults
with intellectual and other disabilities and their ability to gain employment by
establishing many transition programs (Americans with Disabilities Act, 1990). These
programs provided job training for adults with intellectual and other disabilities, ages 18
years to 22 years, within school districts or at job sites within the community if they were
unable to obtain a high school diploma (Information retrieved from Utah school district
websites, September 2012). Such transition programs were available for adults with
intellectual and other disabilities within Flowing Rivers School District (FRSD)
(pseudonym) and other Utah counties. In a few cases, adults with intellectual and other
disabilities earned a diploma. These students were no longer eligible for a school district
transition program within FRSD and other Utah counties. Of the students with
intellectual and other disabilities who earned a diploma had the option of finding
employment through community services such as vocational rehabilitation (VR) or
attending a 2-year and 4-year degree college program. Furthermore, some federally
funded colleges had disability support services for any student with a disability.
In this Utah study area are three different types of transition programs for young
adults with intellectual disabilities and other disabilities within FRSD and in other Utah
school districts. Each program has different learning models. Program A provided in
5
school, pre-vocational skills, life skills, and independent living services (Information
retrieved from a Utah school district website, September 2012). In this program, students
accessed the community through volunteer work. Support from the school faded as
support from peers and community increased. In essence, students phased-out of a school
schedule and into a workday schedule. The workday schedule continued after a student
aged-out of the program.
Program B in this county provided vocational and educational programs in a
sheltered workshop or enclave settings within a Utah school district (Information
retrieved from a Utah school district website, September 2012). The students cared for
linen and laundry. They also did assembly and custodial work as well as food services. In
this program, students and their families developed partnerships and linked with
community programs and resources so that upon aging out, community supports were
accessible. Unlike Program A, this program did not discuss fading of support from the
school to the community on their website.
At one time, Program C provided transitional services in a high school setting
where some students commuted to different volunteer work sites within the community
(Personal communication with the anonymous speech-language pathologist, August
2011). In 2011, this program moved to a central location along with special education
teacher, aide, and related services (occupational, functional communication, vision,
hearing, and physical therapy) supports. As such, young adults with cognitive
impairment, ASD, and multiple disabilities from various high schools experienced
opportunities to participate individually or in groups of four or five at different work sites
6
within the community with or without teacher aide or peer support. Unlike Program A
and B, this program had a rural setting and did not post a website that states its mission,
goals, and objectives at this time (Information retrieved from a Utah school district
website, September 2013).
Therefore all three transition programs had some form of coordination and
planning with parents of young adult students with intellectual and other disabilities,
teachers, and outside agencies with family advocacy or development disability
caseworkers or VR counselors. However, some Utah parents worried that there were not
enough extended job support experiences between the ages 16 and 24 years for their
children with social and communication disabilities. As a result, Easter Seals-Goodwill
paired teen mentors with teen and young adults with disabilities who wanted to volunteer
in various work settings. Teens and young adults with disabilities in this program
encompassed workplace experiences and social interactions that intended to help them
with their higher education and employment goals (Cortez, May 15, 2015a).
Current Changes to Vocational Rehabilitation Services
Postsecondary students with disabilities and students with disabilities who
attended these transition programs had the option to request VR support. At the Utah
Capitol building during some recent session, legislators made some changes to the
vocational rehabilitation (VR) services (Anonymous email communication within a Utah
school district, January 23, 2015). These changes were due to an increase in the number
of clients served and the cost of services for diagnostic, restoration, and training. For
7
example, there was approximately a 49% increase in expenditures from Fiscal Financial
Year (FFY) 2007 to FFY 2014 for Utah.
As of July 22, 2014, the federal government passed the Workforce Investment Act
(WIOA), and this act allowed officials in the state of Utah to implement an "Order of
Selection" process. Under this "Order of Selection" process those officials in Utah could
prioritize who received funding for VR services. This recent change of events affected all
current students with disabilities who had a current Individualized Plan for Employment
(IPE) in the following ways. Any students with a current IPE had financial assistance but
only if VR received funding from the State and Federal government. If the funds were not
available, then students continued to receive VR counseling with no payment for training
and schooling. However, all students with disabilities could continue to apply and placed
on a waiting list until monies became available. The first category in the "Order of
Selection" are mostly students with most significant disabilities, ages 16 – 21 years.
Therefore any specialized education teacher needs to encourage students with disabilities
to apply for VR services when they turn 14 years old or before they age-out (Anonymous
conversation with a VR case manager on August 19, 2015). At this time, VR officials are
unable to serve all young people with disabilities, and these officials are hopeful that this
new "Selection of Order" process will improve this situation over a long period
(Anonymous email communication within a Utah school district on January 23, 2015).
Other Factors that Impact Access to Services
Occasionally, the parents of young adults with disabilities who attended
Individual Education Plan (IEP) meetings assumed that the IEP was a means to receive
8
automatic VR services. According to Utah state law, the parents and student who
qualified for specialized education support were to review and discuss three components
with the IEP team at or before the student turned 16 years old. These three components
are the student's career interests, current coursework, and ways that the IEP will address
the student's future postsecondary goals or aging out transition program goals. (Retrieved
from the website https://www.disabilitylawcenter.org/education/). However, many
transition planning goals in middle school and high school fail to provide guidelines for
students with disabilities and their parents on how to navigate the entire transition
planning process.
Instead, students with disabilities answer questions provided by the State of
Office of Education about what job the student would like to have, a short statement
about the student’s strengths by the teacher and the type of courses that will support the
student’s transition goals. I witnessed the following scenario at some IEP meetings. The
student wanted to be a nurse, but the student could not read past the 3rd-grade level or
calculate math problems past the 2nd-grade. The teacher moved on to another portion of
the IEP instead of discussing how students could pursue nursing in a unique way such as
charting notes and managing a patient’s medication. At another IEP meeting, I observed
how teachers at the junior high reviewed the student's career interests and told parents to
expect more information about transition plans at the high school (Personal observation at
IEP on November 18, 2015). At any 10th-grade high school IEP meeting, teachers
usually encourage parents to apply for VR services for a child to start an Individual Plan
for Employment (IPE) before that child ages-out of a transition program or graduates
9
from high school (Personal observation from IEP meetings since 2011 to current date). At
these IEP meetings, the parents received a booklet of community services with VR's
number written on the front. I can only recall up to five times where the VR counselor
attended an IEP transition meeting (Personal observations at IEP meetings from school
years 2013-2015).
Accessing Services Related to Aging out and Data Collection
At 22 years of age, all students within Utah transition programs aged-out
(Individuals with Disabilities Education Act, 1990). That is, all Utah state transition
services for assisting with employment through the school districts were no longer
available (Individuals with Disabilities Education Act, 1990). When students with
disabilities aged-out of a school district program or started postsecondary education after
12th- grade, the school district tracked them for up to one year. Then the data from the
survey transferred from a statewide data bank to the Federal government's databank
(Newman, Wagner, Cameto, & Knokey, 2009). Sometimes, the data gathering process
failed because (a) the student with intellectual and other disabilities misunderstood the
question enough to answer it, (b) the postsecondary student opted out of survey
participation, or (c) the parents had no guardianship authority.
Access to Services and Guardianship
In other cases, some parents without guardianship only guided and asked for
participation with community support systems when their young adult with disabilities
aged-out or received a certificate of completion. However, there are parents with full
guardianship. When parents obtained guardianship, it could cost as little as $450.00 or as
10
much as 2,000.00 dollars (Anonymous personal communication with VR counselor,
October 16, 2012). Some parents completed the paperwork independent of a lawyer and
go through a non-profit agency such as a parent advocacy group and other parents
retained a lawyer (Anonymous personal conversation with VR counselor, October 16,
2012). At FRSD IEP transition meetings, I observed how only a small number of parents
obtained guardianship for their adult children with intellectual and other disabilities.
Before the student turned 18 years of age, the IEP team case manager inquired about the
status of guardianship and asked that the parent and student with a disability sign an "Age
of Majority Rights" form (Retrieved from a website
http://www.schools.utah.gov/sars/DOCS/IEP/11.aspx). The status of guardianship is
valuable information for the planning of a student's transition from school to the
community because it impacts the amount of parental decision-making made on behalf of
the student with disabilities.
Other Factors Related to Accessing Services
There are additional factors that could impact accessing services after aging out
from a school district transition program or graduation from a high school. Some students
who aged-out of a transition program were at risk to become isolated from employment,
social life, and recreations because they no longer received school district transportation
services or had daily access to friends in a program (Anonymous personal
communication on May 7, 2014). Some parents changed from dual income to a single
household income to care for their adult children with intellectual and other disabilities.
The latter could create reduced income for transportation that could cause social isolation
11
to both the parents and their adult children with intellectual and other disabilities.
Additionally, the postsecondary student with disabilities may not problem solve
adequately enough to navigate through a college environment and advocate for VR
support (Personal experience and anonymous communication at IEP meetings from
August 2012, 2013, and 2014).
When students aged-out of school district programs at age 22 with a certificate of
completion or graduate from high school with a diploma, the parents or guardians
assumed some or all collaboration, management, and advocacy work for their adult
children with intellectual and other disabilities. At this juncture, parents and I discovered
how school district and community agency information was difficult to interpret due to
ill-defined categories and mazes of community agency resources. Personally, as a parent
of a daughter with dyslexia and anxiety, I received transition information at the
Individual Education Plan (IEP) meeting, and I attended a meeting on VR services during
a parent/teacher conference night about six months before she graduated. When my
daughter turned 18 years, she had independent decision-making and full privacy rights.
Her decision-making skills made collaboration, management, and advocacy difficult
because her social-emotional skills were immature for multi-step tasks. As a result, she
missed college enrollment deadlines and follow-up appointments with outside agencies.
She never did receive VR support or disability service support at college because VR
counselors assessed her as having adequate skills to find work and enroll independently
in any college program. Currently, my daughter is 24 years of age, and she has quit two
12
college programs even though she has been in good standing academically. She relies on
friends and family members to help her navigate the Medicaid system.
Another dilemma that eventually affected these young adults with intellectual and
other disabilities was in regards to how businesses learned about grants and tax incentives
to hire adults with disabilities. Utah legislators passed legislation to allow a continued a
tax credit of 3000.00 dollars per employee per year for up to two years to businesses for
hiring any person with a disability. For businesses to qualify for this tax credit, the
employee must either be receiving services from a program certified by the State
Department of Human Services or be eligible for services from the Division of Services
for Young People with Disabilities (DSPD) at the time the individual began working for
the employer. Also, the employee must work for the employer in the state of Utah for six
months, and the employer must pay the employee minimum wage. (Information shared
by a DSPD service director at a professional conference in the study area, February 4,
2015).
A Gap in Practice
The process of applying for services with DSPD and VR services has many
tedious steps and deadlines. According to DSPD, about 4000 persons with disabilities
received assistance, and about 2000 applicants remained on a waiting list for services as
well as other people that were ignorant about DSPD services (Information shared by a
DSPD director at a professional conference in the study area, February 4, 2015). There is
a gap in practice between parents, teachers, state/federal, and non-profit agencies
regarding the collaboration of communication updates that could or could not impact
13
access to services. There are many agencies and advocacy groups in Utah that are
accessible to parents of children with intellectual and other disabilities and school
districts. However, resources within Utah high schools, colleges, transition programs,
state and non-profit agencies have been reduced down to websites, links, pamphlets, a
brief one on one consultation, and waiting lists.
The Rationale for the Problem
Evidence of the Problem from the Professional Literature
Parents of adult children with disabilities may not fully understand the services
available to their children once they age out or transition from school programs. Some
parents attributed their lack of understanding of services to limited access to general
information or guidance from school personnel (Grigal et al., 2011). The unique
perspective of the parent should be considered by the school, business, and agency
personnel when identifying possible reasons why adult children with disabilities have
problems accessing services of school districts, outside agencies, and potential
employers, according to Canha et al. (2013). In their systematic literature search, Davis
and Beamish (2009) discovered, however, that only a few small-scale U.S. studies had
been conducted on parents’ perspectives on family experiences and outcomes after the
children of these parents aged out and exited a school transition program. Thus, there
appears to be a gap in the literature on the study topic.
In the Utah area examined in this project, the Utah government commissioned
Chambless et al. (2010) to conduct a needs assessment to determine the rehabilitation
needs of adults with disabilities. A census report conducted by a Utah university
14
indicated a 46% employment rate for all adults with disabilities within the local study
location as compared to a 39% rate nationally (Wilhelm & Robinson, 2013). Chambless
et al. associated the higher employment rate with lower state-wide unemployment rates.
In a 4-year period between 2004 and 2008, the percentage of employed adults with
disabilities had not changed at the local and national level (Chambless, 2010; Harkin,
2012; Wilhelm & Robinson, 2013). According to Harkin (2012), the cause of the lag in
the employment of adults with disabilities was due to the 2008 recession and other
events. (I confirmed this information with a DSPD director at a local study conference on
February 4, 2015.) This lag in the employment of adults with disabilities resulted in
higher unemployment rates, lower median wages, a disinterest in searching for jobs, and
longer periods of poverty than other low-income populations (Disability Statistics and
Demographics Rehabilitation Research and Training Center, 2011; Livermore, 2009).
In Utah and other western states of the United States, special committees
represented adults with disabilities. National and Utah government leaders noticed a lag
in the employment of adults with disabilities and how this population had further been
affected by the economy (Balcazar et al., 2014; Harkin, 2012). To address these issues,
officials in Utah and other western states of the United States organized special
committees at the federal level and conducted needs assessments and economic impact
studies at the state level in the local area of this research study. Officials in the Obama
administration also signed the Workforce Investment Act into law on July 22, 2014.
Former U.S. Senator Tom Harkin, a special committee member, identified adults with
disabilities who were not working because they were not interested in returning to any
15
job (Harkin, 2012). He also stressed how adults with disabilities experience poverty at a
much higher level than the general population, and therefore, have a harder time
recovering from poverty (Harkin, 2012). Leaders in Utah and other Western U.S. states
conducted needs assessments to learn about employment supports for adults with
disabilities. These adults with disabilities requested better support for tuition and books
expenses, ways to locate potential employers, health benefits, and job training for a short
time (Colorado State Division of Vocational Rehabilitation, 2012; Lucenko et al., 2009;
Oregon Department of Health Services/Vocational Rehabilitation, 2017). Community
members could develop employment projects to alleviate poverty from needs assessment
results and economic impact studies. Researchers who conducted economic impact
studies have calculated that agency and officials’ support of VR can result in increases in
the earning potential of their client because state coffers have more tax revenues when
adults with disabilities work, which results in less benefit assistance (Kregal, 2012;
Wilhelm & Robinson, 2013). Despite these benefits for Utah and other Western U.S.
states, most officials continue to notice high unemployment for adults with disabilities
(Kerr, 2013).
Although these economic impact studies, special committee reports, and needs
assessments have provided numeric data on the problem and a better understanding of
services access from the perception of adults with disabilities, other avenues need to be
explored to further comprehend access issues following individuals’ aging out of
transition programs and graduation from high school. In my review of the literature, I
found no information about the parent’s perspective in regards to transitions from
16
preschool to 12th- grade level schooling, postsecondary experiences, and aged-out
options following their son or daughter’s exit from school-based transition programs and
secondary education. I also found few studies concerning the risk of social isolation and
financial dependency on families. Davis and Beamish (2009) suggested that parents want
to be more involved in the transition process and have access to better transition planning
services. The parents of adults with severe disabilities in the study reported barriers such
as elevated levels of unemployment, community isolation, and financial dependency
upon families (Davis & Beamish, 2009). I observed how most of the parents of adults
with intellectual and other disabilities in FRSD directly noticed the outcome of the aging
out and graduation processes, but they were not often involved in the federal/state and
legislative changes.
Based on my review of the literature, there appears to be a gap in collaboration
and timely access to resources related to (a) transitions from preschool to 12th-grade
level schooling, (b) postsecondary information, (c) services following aging out between
parents, teachers, and state, federal, and nonprofit agencies, and (d) financial and social
service supports in the local area. If parents could access updated resources, then the
parents of children with intellectual disabilities and other disabilities could lead to better
choices in guiding their children. As a result, parents’ perceptions may have an improved
understanding of access to services in the following areas:
• transitions from preschool to 12th-grade level schooling,
• aging out and postsecondary options from outside providers with support
specific to community living, employment, and higher adult education,
17
• financial independence and DSPD support, and
• employment and community opportunities and social isolation.
Definition of Terms
Age out: A term used for the termination of individual special education services
offered by the state when students reach 22 years of age (Sanford et al., 2011).
Asperger syndrome: A term that used to be a subcategory of autism spectrum
disorder (ASD); In the DSM-5, however, Asperger syndrome is no longer a diagnostic
category as it is now considered a broad collection of issues under the category ASD
(Paul & McCarty, 2014).
Autism spectrum disorder (ASD): A neuro-developmental disorder where the
child exhibits persistent deficits in social communication and social interaction as well as
restricted, repetitive patterns of behavior, interests, or activities (Paul & McCarty, 2014).
Critical disability theory (CDT): A theory that encompasses the notion that a
disability is not the consequence of impairment but, rather, is a social construct rooted in
an individual’s personal experiences with society dignity (Mazeikiene & Ruske, 2011;
see, also, Freire, 1970).
Developmental disabilities (DD): A severe, chronic disability that originated at
birth or during childhood and is expected to continue indefinitely, and which
substantially restricts the individual’s functioning in several major life activities
(American Association on Intellectual and Developmental Disabilities, 2010).
18
Multiple disabilities: Concomitant impairments, which can include hearing,
vision, intellectual, physical, speech, language, or learning disabilities which result in
severe educational needs (IDEA, 1990).
Social Security Insurance (SSI): An supplemental income program for individuals
with little or no income or minimal prior work experience that the government subsidies
through general tax revenues. The participants follow strict income and resource limits
(Kregal, 2012).
The Significance of the Local Problem
Researchers suggested possible reasons for elevated levels of unemployment,
community isolation, and financial dependency upon parents when their children with
intellectual and other disabilities aged-out of a transition program or graduated from high
school. There were multiple possibilities for the lack of access to services after aging out
or graduating from high school. These possibilities could be a disconnection between
pedagogy and the amount of job training support as well as employer expectations of job
skills needed to employ adults with disabilities could be possible barriers. For example,
these young adults with intellectual and other disabilities experienced a variety of
teaching pedagogy which prepared some of them, but not others for employment or work
experience outside of high school (Neubert & Moon, 2006; Phillips et al., 2009).
Moreover, the job training program provided better integration of young adults with
intellectual and disabilities; it also increased reliance on job training support which could
lead to unsuccessful independent competency levels (Ferguson, McDonnell, & Drew,
1993; Riches & Green, 2003).
19
A possible cause for reliance on job training support and a disconnect between
teaching pedagogy could stem from a lack of awareness of what employers considered to
be priority job skills (Darling-Hammond, 2010; Phillips et al., 2009; Riches & Green,
2003). These factors created an atmosphere of marginalization that facilitated learning
opportunities for some adults with intellectual and other disabilities “yet restricting
opportunities for others” (Knoll, 2009, p. 122). The marginalization of young adults with
intellectual and other disabilities affected all demographic and geographic areas—locally,
nationally, and internationally—creating a financial burden on families of young adults
with disabilities and their communities (At-Turki, 2012; Hasnain & Balcazar, 2009;
Sanford et al., 2011). Therefore, the lack of adequate teaching pedagogy found in the on-
the-job training for these students as well as the disparity of the different types of job
training programs impacted access to services and employment for adults with
intellectual and other disabilities which could result in marginalization of these adults.
Other researchers cited additional possible reasons for an impact on access to
services, and these were a financial burden and community isolation. Some parents had to
change from a two-income family to a one-income family because their adult children
with disabilities needed supervision, guidance with daily living skills, and transportation
to physicians, jobs, postsecondary school, and social events (Davis & Beamish, 2009;
Madaus, Grigal, & Hughes, 2014). Other possible reasons for financial burden in the
Utah families could be that some families could not apply for assistance whereas other
families could apply for and received $650.00 to 1000.00 dollars per month (Personal
communication with anonymous adult disabilities advocate, November 13, 2012). This
20
assistance amount is budgeted to cover rent, food, utilities, clothing, entertainment, and
transportation. Lastly, if adults with intellectual and other disabilities remain unemployed
or earn lower than median pay of the general population, then their ability to move from
poverty to sustainability becomes harder to achieve (Schecter, June 21, 2013).
Sometimes one burden leads to other burdens for both the parents and their
children with intellectual and other disabilities. When adults with intellectual and other
disabilities aged-out of a program, there was less socialization with peers. Blacher et al.
(2010) reasoned that cognitive and multiple deficits impacted adults with intellectual and
other disabilities. Only with family support, these adults with disabilities could contact
peers and access community services. In summary, even though Utah and other western
states received more tax revenue and provided less allocation of benefit assistance to
employed adults with disabilities, this populations' employment in the community lagged
behind adults without disabilities (Balcazar et al., 2014; Harkin, 2012). At-Turki, (2012),
Janus, (2009), and Phillips et al., (2009) suggested a couple of possible factors that
contributed to this lack of access to service. First, school district transition programs were
preparing parents for future transitions between developmental milestones instead of
having job transition support and teaching pedagogy aligned with potential employer
expectations. Second, aging out of a school district transition program without
community support from outside agencies lead to community isolation and increased
financial dependency upon families which created apathy towards finding jobs in the
community
21
As a result, these adults with disabilities became marginalized as members of
society, and parents of these adults encountered financial burdens and changes in family
dynamics. The purpose of this study is to gain in-depth knowledge from the parents'
perspectives of service access related to (a) transitions between preschool and 12th-grade
level schooling, (b) public assistance, (c) postsecondary education, and (d) employment
as well as (e) the potential burden of financial support and risk of social isolation after
their children with intellectual and other disabilities aged-out or graduated from high
school.
Guiding/Research Questions
For this case study, I developed three research questions to explore participating
parents’ perspectives of their experiences with the aging out process and of the
postsecondary options for their adult children with intellectual and other disabilities.
These questions also allowed me to explore if lack of access to services resulted in
financial support burdens on parents and the possibility of social isolation for their
children with disabilities. The questions were the following:
1. How do parents perceive transition experiences of their children with
intellectual and other disabilities who have qualified for specialized services
and placement while attending preschool-12 grade level school?
2. How do parents perceive the aging out or postsecondary options for their
children with intellectual and other disabilities who have attended school-
district transition programs or graduated from a high school?
22
3. How do parents perceive the burden of financial support and potential of
social isolation for their children with intellectual and other disabilities who
have aged-out of a school-district transition program or graduated from a high
school?
The participating parents’ retrospective responses to individual interview
questions provided insight into their experiences of the aging out and postsecondary
process for adult children with intellectual and other disabilities. For example, their
retrospective responses afforded a better understanding of how to access Utah state-run
application processes for Supplemental Security Insurance (SSI) and Developmental
Delay (DD) services, vocation rehabilitation counseling, nonprofit social advocacy
groups, employment agencies, and recreation organizations.
Review of the Literature
Theoretical and Conceptual Frameworks
In the following section, I present the conceptual context of an explanatory
theory, Critical Disability Theory and CDT principles, and social constructivism which
helped me understand the potential reasons related to the marginalization of and
significant hiring gap between individuals with or without disabilities.
Critical disability theory. Young adults with disabilities who participated in a
transitional training program experienced different types of employment within their
communities. Unfortunately, when some of these students reached 22 years of age, there
could not be further employment opportunities or training due to hygiene, cognitive,
behavioral, or physical challenges (Havercamp & Scott, 2015; Shogren & Shaw, 2017).
23
As a result, their life could become more isolated due to financial, time, and
transportation constraints placed upon the parents of young adults with intellectual and
other disabilities (At-Turki, 2012; Janus, 2009; Phillips et al., 2009). Although there are
many different reasons for this phenomenon, I focused on the concept of dignity for
young adults with disabilities or Critical Disability Theory (CDT). From the standpoint of
CDT, disability is not the consequence of impairment; rather, it is a social construct based
upon an individual's personal experiences with dignity (Freire, 1970; Garrison-Wade,
2012; Mazeikiene & Ruske, 2011). Furthermore, disability is an interrelation between
impairment, individual response to impairment, and the social environment (Anastasiou
& Kauffman, 2011; Devlieger, Rusch, & Pfeiffer, 2003; Freire, 1970). Freire (1970)
explained individuals with different learning abilities acquire a voice in society by giving
them opportunities to experience life. Breault and Lack (2009) complemented Freire's
words by suggesting that critical pedagogy is a political position that teachers must take
to change attitudes, beliefs, and even definitions that could marginalize individuals with
disabilities and other groups in society. Lastly, the social disadvantage experiences
caused by the physical and social environment of young people with disabilities failed to
meet the needs of these citizens who do not relate to the social expectation of normalcy
(Freire, 1970; Hosking, 2008; Ward, Nichols, & Freedman, 2010).
Historically, CDT emerged with Paolo Freire's pedagogy. To him, it was
important to strive “for social equality,” develop “the dignity of all marginalized people,”
and give “voice to the voiceless” (Mazeikiene & Ruske, 2011, p. 29). Freire (1970) was
purported to engage in genuine contemplation of the kind when a person is conscious of
24
his or her relationships within society. Freire's critical disability pedagogy connected with
social constructivism which defined the social reality between reconstructed groups of
individuals (Baglieri, Valle, Connor, & Gallagher, 2010; Bone, 2017; Mazeikiene &
Ruske, 2011; Plata, 2011). Freire (1970) emphasized that teachers, parents, students, and
administrators are mutually responsible for a system in which all learn and grow within
the community. Additionally, Freire's critical disability pedagogy related to dignity for
marginalized populations, which includes people oppressed due to disability, race, or
economic status. Mazeikiene and Ruske (2011) agreed that the “issue of dignity for
young people with disabilities had not been sufficiently developed within sociology and
education” (p. 21). Freire (2007) suggested that this issue was due to society’s resistance
to change.
CDT principles and social constructivism. When considering CDT principles
and social constructivism, these constructs have helped me understand the potential
reasons related to the marginalization of and significant hiring gap between individuals
with or without disabilities (Darling-Hammond, 2010; Hosking, 2008; Knoll, 2009;
Mazeikiene & Ruske, 2011). Disability has been described as a social construct resulting
from limitations that others place on persons of a different gender, ethnicity, physical, or
cognitive ability (Baglieri et al., 2010). For example, researchers noted that adults with
cognitive disabilities and adaptive living deficits were less likely to work full-time for an
employer. Instead, these individuals worked part-time hours with fewer wage increases or
restricted to segregated facility-based settings and earned less than minimum wages
25
(Hughes, 2013; Hughes & Avoke, 2010; Lindstrom, Doren, & Miesch, 2011; Morgan &
Openshaw, 2011; Smith & Routel, 2010).
At a national and a Utah level, most members of society consider young people
with disabilities to be a homogeneous group (Smith & Routel, 2010). Instead, adults with
disabilities are a heterogeneous group with many different characteristics—various
classifications of disability, intellectual and physical challenges, gender, class, and
cultural—to name just a few (Ferguson & Nusbaum, 2012; Grigal et al., 2011; Hasnain &
Balcazar, 2009). Bone (2017) and Hosking (2008) explained that there is a gap between
the medical model which tries to abolish disability and the society model which
accepts/rejects and values/devalues young people with disabilities as equal/unequal
members of the community. Therefore, given this discourse, it is important to protect the
dignity and civil rights of all marginalized populations within communities.
Current Research Literature
I used educational data and book sources from a local university library and
online publisher sites (Sage Publishing, Carfax Publishing, Routledge Publishing, Wiley
Online Library, Wiley-Blackwell Publishing, Dalhousie University) for this literature
review. These online publisher sites provided me with further peer-reviewed studies
where I found additional references. For finding readings of Freire and case study
methodology, I benefitted from locating such resources at a local university library.
Additionally, I searched through the following Walden University educational databases:
Academic Search Complete Publications, ProQuest Central New Platform, and Sage
Premier. Some of the disability-related and case study articles were linked and organized
26
in Mendeley Desktop, and other articles were orderly local problem scenarios that
pertained to areas such as parent perspectives, social isolation, financial burden, and
pedagogy. The Boolean searches consisted of phrases that had connecting words of
or/and a concentrated search of the years from 2012 through 2016). The keywords used
and cited in 32 of the articles in the literature review section are constructivism, critical
disability theory, perspectives, disabilities, intellectual disabilities, cognitive disabilities,
mental health, autism, learning disabilities, postsecondary, transition planning,
vocational rehabilitation, and employment. It was not my intention to focus on any
particular type of disability classification, but in some cases when I focused on a
particular type of disability classification, I found more articles about parental
perspectives.
In this literature review, I provided possible factors related to parents' perceptions
related to their experiences, their children's aging out options, and their burden of
financial support and social isolation of their children with intellectual and other
disabilities who have attended and aged-out of school-district transition and secondary
programs. Several factors are discussed to help understand the practice gaps between
employers, parents, teachers, and outside agency staff and reasons for financial burden
and social isolation. I discuss the following factors: (a) teaching methodologies,
pedagogy, and work experience for adults with disabilities, (b) teachers’ knowledge of
resources, (c) demographic variables,(d) self-determination, communication, and self-
care, (e) family expectations and monetary resources, (f) lack of understanding of how
transition services applied, (g) parents as primary advocates, and (h) relevant public data.
27
Teaching Methodologies, Pedagogy, and Work Experience
Over many years, teachers and researchers practiced and investigated effective
ways to address gaps in transition services. A variety of teaching methodologies,
pedagogy, and work experiences were available to adults with disabilities which could or
could not prepare them for employment (Alverson, Naranjo, Yamamoto, & Unruh, 2010;
Carter, Brock, & Trainor, 2014; Chambers et al., 2009; Hasnain & Balcazar, 2009;
Lindstrom et al., 2011; Phillips et al., 2009).
Teaching methodologies. There are some agreements and disagreements
regarding teaching methodologies amongst researchers. Lindstrom et al. (2011) offered
case study results that indicated transition services lead to increased confidence and
clearer planning for post-graduation education and work of young adults with disabilities.
A comparative study by Chambers et al. (2009) of 15 surveyed high school participants
indicated that 83% of students with disabilities reported that high school had prepared
them for work, but only 19% of the students felt prepared to attend college. Whereas only
63% of high school students without a disability felt prepared for work, yet 40% of those
students felt prepared to attend college. Comparatively, other researchers conducted a 10-
year follow-up case study that involved two young adults with ASD and four young
adults with multiple disabilities that indicated full inclusion in the general education
classroom leads to societal exclusion after graduation. This teaching methodology
encouraged a reliance on SSI (Kregal, 2012; Philips et al., 2009). Also, Carter et al.
(2014) identified how teacher transition-related needs of adolescents with severe and
developmental disabilities were heterogeneous. In fact, 107 out of 134 students with
28
severe disabilities had exceptional profiles that were distinctive to each student. A Carter
et al. (2014) study also observed that teachers needed to include parental perspectives
about their children to gain the latest information for a transition profile. Therefore, the
parent’s perspective is an area for further exploration.
Pedagogy. Researchers started to explore foundations for a better transition from
high school, college, and work settings for young adults with disabilities. Grigal et al.,
(2011), Hasnain and Balcazar, (2009), and Philips et al., (2009) agreed that a young adult
with disabilities needed work experience while in high school. After a systematic review
of peer-reviewed articles, technical papers, and dissertations done by Alverson et al.
(2010), there also needed to be more cross-agency data to establish common operational
definitions. Canha, Owens, Simoes, and Gasper de Matos (2013) also reported parents of
adult children with intellectual and other disabilities perceived that teachers did not
collaborate with the community enough to facilitate a successful transition from school to
adult life. Of transition empowerment, teachers who used best practices which promoted
student involvement observed successful transitions of youth with disabilities.
Work experience. Researchers initiated further need for research in the area of
work experience for adolescents and young adults with disabilities. Lindstrom et al.
(2011) noted that young adults with disabilities needed work experience to gain complex
skills like teamwork, responsibility, and ethics. Grigal, Hart, and Weir (2012, 2013) and
Philips et al., (2009) reported that young adults with disabilities should have customized
employment that matches their wants and skills for the job as well as the employer's
needs and skills for the job. There are many different disability classifications. Therefore
29
researchers need to continue to explore workplace experience from the perspective of
parents and of young adults with disabilities.
Teachers Have Limited Knowledge of Resources
Researchers discovered the importance of teacher knowledge about the need for
collaboration with outside agencies and transition planning while students with
disabilities attended school. Although special education teachers are actively involved in
transition planning, their knowledge of extended services such as VR, parent support
groups, and alternative avenues for financial support is limited (At-Turki, 2012; Gillan &
Coughlan, 2010; Li, Bassett, & Hutchinson, 2009; Phillips et al., 2009).
Resources. Some researchers explored and disagreed about successful
implementation of transition programs at the high school level. In contrast to Philips et al.
(2009), Li et al. (2009) found situations where job training and academics should not be
blended because youth with disabilities had unique needs. Specifically, Li et al. (2009)
provided a survey to 343 special education teachers who belonged to a professional
organization to investigate five domains—interagency collaboration, job development,
the role of liaisons between agency and parent, teachers’ role with limited knowledge,
and the impact of dual roles assumed by teachers. Li et al. (2009) indicated that educators
who assumed dual roles as teacher/coordinator provided better transition services because
they collaborated with interagency/job development staff and acted as a liaison between
an agency and parents. Furthermore, when teachers collaborated with interagency staff,
they learned more about resources for parents such as support groups and alternative
avenues for financial support (Grigal, Migliore, & Hart, 2014). Teachers who performed
30
dual roles as educator/collaborator provided better support to parents, yet researchers
showed how teachers did not consistently apply this practice.
Demographic Characteristics
Researchers determined associations and predictors for demographic
characteristics. Some researchers associated demographic characteristics such as gender,
race/ethnicity, size of community population, access to transportation, and disability
competency/category with differential work outcomes (Balcazar et al., 2012; Boeltzig,
Timmons, & Butterworth, 2009; Grigal et al., 2011; Newman et al., 2009; Simonsen &
Neubert, 2012; Test et al., 2009). Other researchers indicated that demographics and
student competency are predictors of employment, and school programs are not
predictors of employment after exiting a transition program (Carter, Austin, & Trainor,
2012; Joshi, Bouck, & Maeda, 2012; Madaus et al., 2014; Wehman, 2013). For example,
Chan et al. (2017) noted that sustained community employment predictors for adults with
ASD were living a large populated area, participating in inclusive education, and having
independent daily living skills. Also, few adults with ASD took and passed a driving test
to obtain a driver’s license, so a long commute to work from a rural area could be taxing
(Falkmer et al., 2015). Yeung and Rauscher (2014) agreed that young adults with
disabilities living in urban population areas have better employment opportunities and
transportation systems than rural population areas. Therefore, access to transportation and
size of the community affected job prospects for young adults with disabilities.
Gender. Some researchers ascertained that there were no gender differences.
However, there were wage differences between men and women with disabilities. The
31
results a few researchers found from a survey given to community rehabilitation
providers at the individual level (who work in the community with typical peers with at
least minimum wages) and to nonprofit agencies (who work in a community where other
crews with disabilities and receive less than minimum wage) and sheltered workshops
(without pay) revealed that there were no significant differences between the age of men
and women with Developmental Disabilities (DD) who held jobs and between gender
differences and types of employment settings (Boeltzig et al., 2009; Simonsen &
Neubert, 2012). Between men and women with DD, there were significant differences in
weekly wage earnings and distribution across industries (Boeltzig et al., 2009). For
example, men with DD earned approximately 22.00 dollars more than women with DD.
Although men with DD earned more wages in food service, maintenance, and janitorial
jobs, women with DD earned more wages in assembly/manufacturing and clerical jobs.
In contrast, Simonsen and Neubert (2012) found that gender was not a predictor of
community employment; however, the dependent variable in their study did not include a
minimum number of hours worked per week.
Race/ethnicity and disability classification. Researchers found differences
between race/ethnicity and disability classification of young adults with disabilities who
pursued employment. Simonsen and Neubert (2012) conducted a survey of transitioning
youth with intellectual and other developmental disabilities of varies races/ethnicities,
including Caucasian/White, Black/African American, Asian, Spanish/Latino origin,
American/Alaskan Native, and Native Hawaiian/Other Pacific Islander, and American
Indian. Contrary to other studies, Caucasian/non-Hispanic race/ethnicity had negative
32
employment outcomes which attributed to a better representation of a diverse national
demographics (55%); whereas other studies only compared 33% of a diverse national
demographics (Simonsen & Neubert, 2012).
Disability classification. Overall, due to the level of functioning of young adults
with intellectual disability and/or other disabilities, there was greater employment support
for young adults with severe disabilities in special education programs than from VR and
mental health support which was significantly lower in post-school employment (Hart,
Grigal, & Weir, 2010; Joshi et al., 2012; Test et al., 2009). The school staffs’
implementation of work experiences in school was not significant for young adults with
mild intellectual disabilities. However, the geographical location of the school was
significantly related to the participation in paid work experience apart from school-
sponsored work (Graham, Keys, McMahon, & Brubacher, 2015; Joshi et al., 2012). For
example, urban students with disabilities are six times more likely to have experienced
paid employment than rural students with disabilities. In contrast, the school size and
percentage of students receiving specialized instruction was not a predictor of
employment-related transition activities (Joshi et al., 2012). Many different aspects
impact the employment of people with disabilities.
Factors that Impacted Employment
Researchers learned how classification, personal factors, self-determination,
communication, self-care, social skills, job search skills, and transportation impacted
people with ASD and intellectual disabilities than other disabilities.
Autism spectrum disorder (ASD). Young adults with ASD experienced more
33
dependency on their families for basic needs, financial support, housing, daily
supervision, and companionship than their same age peers. Wehmeyer, Shogren, Zager,
Smith, & Simpson (2010) indicated that more research was needed to investigate the
effects of teaching students with ASD self-determination skills as a transition skill. In
comparison, the NLTS2 data showed that 43% of postsecondary students with ASD did
participate in college education (Chiang, Cheung, Hickson, Xiang, & Tsai, 2012). Chiang
et al. (2012) predicted how family and student characteristics, along with transition
planning factors, impacted better postsecondary outcomes for students with ASD. Some
of these predictions were: (a) high parental expectations and high annual household of
above $25,000, and (b) an above average academic level. Chiang et al. (2012) also found
a significant correlation between student’s participation in transition planning and
involvement in postsecondary education. However, students with ASD who participated
in transition planning did not necessarily have a predictor of participation in
postsecondary education. Only the student’s primary IEP post-high school goal was a
predictive factor.
Outcome of outside agency assistance. Researchers showed how transition
planning did not guarantee full-time employment for adults with ASD. Burgess and
Cimera (2014) indicated that people with ASD only worked part-time and required more
funding than other disabilities except for sensory disorders. The VR agencies in the 50
states increased their services for transition-age adults with ASD from 913 individuals in
2002 to 8,154 individuals in 2011. However, there was variability in the rate of
successful employment over time within each state. Even though transition-aged adults
34
with ASD had equal access to employment support; there continues to be no
improvement of employment outcomes for adults with ASD from 2002 to 2011.
Impact of personal factors. Young adults with disabilities are successful as
employees. However, their level of adaptive, cognitive and social skills defines their
successes. Shogren and Shaw (2017) suggested from their study that people in the high
incidence disabilities group (specific learning disabilities, emotional disturbances, speech
or language impairment, and other health impaired) had greater opportunities for
postsecondary employment. In contrast, the cognitive incidence disabilities group (ASD,
multiple disabilities, and deafness) and the lower incidence disabilities group (intellectual
impairment) had lower rates of employment. The cognitive and lower incidence
disabilities group of people were not provided the same access to and experiences in
integrated employment as the higher incidence disabilities group. Subsequently, people
with intellectual impairment and cognitive impairments demonstrated higher levels of
financial support, but they had lower levels of financial independence. These researcher
results amplified the need for developing opportunities for competitive employment for
people with intellectual impairment, ASD, deafness, and multiple disabilities.
Self-determination, communication, and self-care. Researchers associated
several competencies about the areas of self-determination, communication, and self-care
with future employment prospects (Jivanjee, Kruzich, & Gordon, 2009; Ju, Zhang, &
Pacha, 2012; Seong, Wehmeyer, Palmer, & Little, 2015; Test et al., 2009). Jivanjee et al.
(2009) conducted a pre-post focus group questionnaire of 42 family members who were
supporting persons with mental health problems in Oregon/Washington. These family
35
members balanced assistance for their son, daughter or sibling with mental health
disabilities with encouragement for independence. These family members also reported
how the maladaptive behaviors of their son, daughter or sibling created significant
barriers to community integration and transition to adulthood. Test et al., (2009)
identified and correlated school predictor data with a potential level of evidence for
employment. These researchers indicated 16 evidence-based predictors: career
awareness, community experiences, exit exam requirements, interagency collaboration,
occupational courses, paid employment for work experience, parental involvement, a
program of study, self-advocacy/self-determination, self-care/independent living, social
skills, student supports, a transition program, vocational education, and work-study.
However, Wang, Hill, and Hofkens (2014) indicated in their study that parents’
traditional involvement became less effective at the middle school and the high school
level. Subsequently, Hirano, Garbaez, Stanley, and Rowe (2016) explained that parents of
secondary students became less involved for the following reasons: (a) lack of knowledge
about how to contact community support, (b) lack of communication with their youth
about plans for the future, (c) fewer expectations for the future from the parent’s
perspective, and (d) time and energy.
Carter et al. (2013) also added that self-determination skills are a developmental
task that students with ASD and intellectual disabilities can learn, but these supports
should start before these students enter high school. Specifically, Ju et al. (2012)
surveyed 168 employers to assist with the identification of five top job skills of
employees with disabilities and without disabilities. The five top job skills were these
36
abilities: (a) to demonstrate personal integrity and honesty, (b) to follow instructions, (c)
to show respect for others, (d) to be on-time, and (e) to show high regard for safety
procedures of employees with disabilities. These top five job skills were the same for
employees without disabilities except that being able to read with understanding was
rated higher than showing regard for safety procedures.
Social skills, job search, and transportation. People with disabilities
experience different outcomes for employment. Zalewska, Migliore, and Butterworth
(2016) illustrated the relationship with employment of young adults with disabilities.
The youths with ASD scored lower on the social skills scale in the area of assertion when
compared to their peers with other disabilities. Youths with ASD and intellectual
disabilities did not initiate job search strategies such as checking with employment
services, employers, or family and friends about jobs than youth with other disabilities.
Forty-one percent of youth with ASD and 20% of youth with intellectual disability had
driver’s license or a permit as compared to 74% of youths with other disabilities. These
researchers also added that 55% of youths with ASD and 53% of youths with an
intellectual disability used ride services from family/agency/ dial-a-van services to get to
their current or most recent job. Therefore, employment outcomes for youth with ASD
and intellectual disability were less successful compared to youths with other disabilities.
These researchers further discovered that psychological empowerment associated with
self-determination skills. Plus, the youth with disabilities who were employed had higher
social skills than peers who were not employed, and youths with disabilities who knew
how to drive or how to take public transportation had higher opportunities for
37
employment. Many factors impact the transition of young adults with disabilities and the
collaboration early between schools and VR agency could make the employment process
more unified.
Employer and employee attitudes. Even though governments provide incentives
to hire employees with disabilities, some employers will not employ adults with
disabilities. Kaye, Jans, and Jones (2011) surveyed human resource professionals and
supervisors who were resistant to complying with ADA employment provisions. The
participants reported the following obstacles to employing workers with disabilities: (a)
lack of awareness of disability and accommodation issues, (b) concern over cost, and (c)
fear of legal liability. Furthermore, some employers expressed a willingness to hire adults
with disabilities, but then they did not hire these applicants. The HR and supervisors rated
the job applicants as warm people yet not employable (Kulkarni & Kote, 2014). These
job applicants with disabilities were type-cast as not competent or suitable employees.
Obstacles to employment. Kulkarni and Lengnick-Hall (2014) summarized
obstacles that could block people with disabilities in the workplace. First, some managers
could stereotype and be biased. Second, managers could be using hiring sources that have
only a few people with disabilities. Third, the recruiter could be narrowing the search by
screening applicants, and during the screening, the mention of a disability could exclude
the job applicant. A group of United States employers participated in a survey which
showed a negative bias towards hiring people with disabilities. Kulkarni and Lengnick-
Hall (2014) concluded that attitudinal barriers continue to exist in the workplace which
then result in fewer opportunities for people with disabilities. Fourth, people with
38
disabilities self-created their barriers when they inaccurately assessed their limitations
and had difficulty transitioning into the workplace. Lastly, some business establishments
posted support for equal opportunity but did not practice equal opportunity employment.
Family Expectations and Monetary Resources
Family expectations and monetary resources could also influence post-transition
employment. A comparative study of caregivers of 246 young adults with learning
disabilities, Down syndrome, cerebral palsy, and undifferentiated learning disabilities
such as ASD and intellectual disability with moderate/severe IQ indicated positive
feelings from parents about having their young adults with ASD and Down syndrome
work. Whereas, there was a higher rate of negative feelings from parents about having
their young adults with cerebral palsy work (Blacher et al., 2010). Furthermore, the
parents of young adults with ASD reported how they expected their son or daughter to
live in the community with greater frequency than the parents of young adults with Down
syndrome, cerebral palsy or moderate /severe intellectual disability. Blacher et al. (2010)
also suggested the parents of young adults with Down syndrome earned more money than
the other caregivers and experienced greater socioeconomic advantages. However, these
researchers did not address the possibility that the parents’ higher socioeconomic status
could discourage independent living in the community for their young adults with Down
syndrome. They noted how family members managed SSI and encouraged their young
adults with cerebral palsy or moderate/severe intellectual disability children to stay in
residence.
39
Lack of Understanding of Transition Services Implementation
Parents and teachers navigate between massive federal and state-funded systems.
The political leaders debate and decide how to manage and fund the county, state, and
federal programs. In past years, schools emphasized academics more than functional
community skills. There could be a lack of understanding of how transition service
experiences contribute to later employment; that is, some teachers could implement an
educational program to establish what transition goals need to be learned. Only not
address where and how these skills are taught (Carter, Austin, & Trainor, 2011; Cimera,
Wehman, West, & Burgess, 2012; Cobb & Alwell, 2009; Daviso, Denney, Bauer, &
Flexer, 2011; Hendricks & Wehman, 2009).
For example, students with emotional or behavioral disorders and the female
gender students with low self-esteem had lower rates of competitive employment after
high school than other groups (Doren & Benz, 1998; Wood & Cronin, 1999).
Accordingly, students with disabilities who had high-performance grades in reading,
writing, and math were twice as likely to be employed competitively than those students
with lower academic skills (Doren & Benz 1998). The federal and state government may
collaborate to provide additional training and funding support to young adults with
disabilities, yet there continue to be gaps within both government agencies.
Vocational rehabilitation (VR) services. The role of the VR is to assist youth
with disabilities in bridging the planning gaps in their transition to postsecondary and
after transition services. When the parents of young adults with disabilities navigate the
VR support systems, they discover that the process is time-consuming and confusing.
40
Equally important, VR staff often offered different VR counselors who had various
eligibility requirements, and VR staff rarely provided job placement and mentorship
placement due to funding restrictions (Carter, Trainor, Cakiroglu, Swedeen, & Owen,
2010). The NDRN (2012) stated that many state VR agencies are unwilling or unable to
coordinate services until later in the student’s transition years or near the end of high
school. At the same time, the adults with disabilities who registered early for VR services
continued to experience slow application processes due to an order of selection (OOS)
state policy (Honeycutt, Bardos, & McLeod, 2015a).
Order of selection (OOS). The state-controlled and planned for the annual cost of
occupational rehabilitation services and allocated VR money to individuals based on the
severity of their disability. Honeycutt et al. (2015a) stated that OOS created an obstacle to
young adult students with disabilities who were applying for school to work transition.
The young adults with severe disabilities were served immediately while those young
adults with less severe disabilities were placed on a waiting list for many months or never
served at all due to resource limitations.
Sheltered and non-sheltered workshops. Non-sheltered workshops cost less
than sheltered VR services, yet the majority of individuals with intellectual disabilities
work in sheltered workshops (Blacher et al., 2010; Cimera et al., 2012; Migliore, Grossi,
Mank, & Rogan, 2008). Those individuals with intellectual disabilities who received
services in the sheltered workshop are usually exhibiting learned helplessness or
developing behaviors that might not be acceptable in non-sheltered environments
(Cimera et al., 2012). Due to sheltered workshops’ loss of popularity, the state-federal
41
VR programs developed supported employment (SE) services for people with intellectual
and other disabilities. The SE service provides competitive work in an integrated setting
with ongoing support services (United States General Accounting Office, 2001). State
VR agencies are investing in SE as a service mechanism to facilitate successful
competitive employment closures (Wehman, Chan, Ditchman, & Kang, 2014).
Student-focused planning. The Cobb and Alwell (2009) systematic review of the
literature indicated how there were relative gaps in educational practice despite empirical
and theoretical knowledge of educators. There also seemed to be a lack of respect and
understanding by some teachers for their students with disabilities and a lack of cognitive
clarity and systematic instruction in specialized instruction curricula. Additional factors
that affected student-focused planning were teachers' uneven transition expertise, low
levels of parent/student involvement, and the influence of families and extended families
on career choices and job acquisition. Joshi et al. (2012) countered that some factors are
beyond teachers’ control for providing work experiences due to a lack of employers
willing to participate and of schools with a high special education population do not have
enough resources for paid employment experiences.
Parents as Primary Advocates
Parents of young adults with intellectual and other disabilities are primary
advocates who experience with their son or daughter the transition to post-school life.
Parents are intermittent participants in transition research (Davis & Beamish, 2009).
According to Davis and Beamish (2009) over the past 20 years, parents have continued to
report low family participation in the transition process and poor coordination of
42
transition planning. These parents of adults with disabilities also identify concerns with
unemployment, restricted levels of participation in community activities, and prevalence
of dependence upon families (Clegg et al., 2012; Davis & Beamish, 2009). The research
on this topic within the United States mostly concentrates on parent and student
involvement in transition planning, systematic national data collection, and development
of surveys about transitions (Davis & Beamish, 2009; Landmark, Ju, & Zhang, 2010;
Rabren & Johnson, 2010). There is limited research on parent perspective of transition
from school for their young adults with disabilities, with the exception of studies done by
At-Turki (2012), Blacher et al. (2010), Gillian and Coughlan (2010), Hasnain and
Balcazar (2009), Jivanjee et al. (2009), Li et al., (2009), and Test et al. (2009).
At-Turki (2012) and Gillian and Coughlan (2010) created international peer-
reviewed studies which offered parental perspectives, but these articles are not applicable
to Utah transitional services policies and procedures. At-Turki's study had a focus on the
Hashemite Kingdom of Jordan. At-Turki (2012) reported vocational training that was not
compatible with labor markets and that hindered the realities of employment for persons
with disabilities. There continued to be employers who believed that persons with
disabilities do not have the same abilities as another employee without disabilities. As a
result, the company ignored the legislative law to hire a designated number of persons
with disabilities. Gillan and Coughlan (2010) noted how transition services in Ireland
were not individual-centered and how services lacked coordination between services. For
example, Ireland's transition services split off into different branches where the service
system consists of waiting lists, limited information about available options, and lack of
43
parent involvement in decisions and planning. Overall, there were less financial support
and organization of government policies and procedures in both the Kingdom of Jordan
and Ireland when compared to the state of Utah.
Relevant Public Data
From articles in a Utah newspaper from 2013 to 2014, I found reports on the
following subjects: (a) experiences of students with disabilities pre- and post-graduation
from a high school, (b) factors that could be impacting employment for any young adults
with or without a disability, and (c) strategies implemented by communities and colleges
to address unemployment of young adults with disabilities. For example, Wood (2013)
reported on the importance of parent advocacy and the need for a liaison between the
parents and the school to help educate and guide the parents of students with disabilities
through the special education process. Furthermore, Merling (2013) discussed how
polarization for high and low skills (service workers, waiters, and security guards) could
limit employment opportunities for high school graduates. Some colleges/universities are
trying to address the need for highly skilled workers by developing support service
options such as academic tutoring and a life skills counselor for young adults with
disabilities (Pope, 2013). There are community success stories such as one report where a
police department employed two employees with disabilities after job coaching from a
nonprofit organization (Cortez, 2014). Lastly, the staff in the Utah State Office of
Education has been coordinating with university researchers to gather survey information
on the transition process (Conversation with nonprofit parent support agency, June 25,
2014).
44
Potential Implications for the Project
Parents already know through their own experiences that their aged out adult
children with disabilities encounter barriers of elevated levels of unemployment,
community isolation, and financial dependency upon them (Davis & Beamish, 2009). To
promote social change, I could encourage a 'community of practice' where there is
collective attention between parents to improve knowledge about services before and
after their son or daughter ages-out of a transition program or prepare to graduate from
high school (Wenger, 1998). I could promote learning from each other by collecting and
sharing resources—experiences, tools, and methods for approaching repeating problems.
I could collaborate with parents in small group and one-to-one meetings. In doing so,
these parents could shift from justifiable marginal participation into complete
participation (Lave & Wenger, 1991). Through these means, parents could have better
access to resources within their unique communities and could learn how to proactively
advocate for collaboration of transition planning services within school districts and
between outside agencies before their children with intellectual and other disabilities
ages-out of a transition program and graduate from high school.
Also, I could attempt to influence and promote a change in practice, if necessary,
concerning suspected practice gaps between schools and outside agency services and
actual employment positions for young adults with disabilities after they age-out of
transition programs and graduate from high school. Through exploration, I could better
understand possible influencers within or outside school districts that either promote
social change or demote social change of these young adult students with disabilities.
45
Through this discovery process, norms for critique could succeed along with feasible
goals for social change (Hosking, 2008).
Summary
There is only limited research on how the parents of adults with intellectual and
other disabilities perceive transition and postsecondary options. The lack of access to
services affects the burden of financial support of parents as well as the possibility of
social isolation of their children with intellectual and other disabilities. Using the critical
disability theory as a guide will promote a better understanding of parent perceptions
about gaps between the aging out process within a school district and postsecondary
access to outside agencies and employment opportunities. Further exploration could
provide enhanced awareness of how parents could access transition, postsecondary,
financial, and social services and employment for their children with intellectual and
other disabilities through community networking.
46
Section 2: The Methodology
In this section, I describe how I used an exploratory case study to gain insight into
parents’ perspectives of access to services for their adult children with intellectual
disabilities or other disabilities. I wanted to gain perspective on how parents perceived
their children’s experiences of their transitions from preschool to 12th-grade level and
after high school graduation. I also wanted to better understand parents’ perspectives on
their children’s options after aging out as well as the potential for financial burden on the
family and social isolation. In the section, I address the following areas: participants and
procedures for gaining access to information, my working relationship with participants,
the ethical protection of participants, data collection procedures and management of
interview data, and thematic analysis of interview transcripts and procedures for ensuring
the credibility of data.
Qualitative Research Design and Approach
I conducted an exploratory case study of how parents of young adults with
intellectual disabilities or other disabilities perceived the transition process offered via
school district programs and their children’s access to outside agency supports or
employment after aging out or graduating from high school. I also explored parents’
perceptions of the financial burden and social isolation risks following the aging out
process. My specific focus was within counties in the U.S. state of Utah.
Research Design
I designed a case study to explore the local problem and gain in-depth knowledge
of the study phenomenon. I specifically focused on lack of access to services for students
47
with intellectual disabilities and other disabilities as they transition from preschool to
12th-grade level schooling and age out of a transition program or graduate from high
school. I also concentrated on ascertaining participating parents’ perspectives of the
financial burdens they faced after such transitions and their young adult children’s risk
for social isolation. My three guiding research questions were as follows:
1. How do parents perceive transition experiences of their children with
intellectual and other disabilities who have qualified for specialized services
and placement while attending preschool-12th-grade level school?
2. How do parents perceive the aging out or postsecondary options for their
children with intellectual and other disabilities who have attended school
district transition programs or graduated from a high school?
3. How do parents perceive the burden of financial support and potential of
social isolation for their children with intellectual and other disabilities who
have aged-out of a school district transition program or graduated from a high
school?
The case study I conducted promotes better understanding, I believe, of the study
phenomenon among educators, community service personnel, parents of young adult
children with intellectual and other disabilities, employers, and local and national
professional organizations (e.g., Council for Exceptional Children, National Association
for Mental Illness (NAMI), and the Utah Speech and Hearing Association.
A single case study or exploratory design. According to Yin (2014), an
exploratory case study is a single case study in which a researcher seeks to understand a
48
phenomenon more deeply by analyzing multiple subunits gathered from interviews,
public data sources, artifacts, field notes, and observations. Parents also could feel safer
to express their ideas more freely. A few studies (Baxter & Jack, 2008; Corcoran,
Walker, and Wals, 2004) reported how parents who had set aside or had not addressed
social issues before were more willing to participate in this explorative research process.
Justification for case study design. At first, I considered an ethnography
research design; however, that design was not appropriate for this research project.
Instead, I explored how parents perceived the transition experiences of their children with
intellectual disabilities and other disabilities. Researchers who use ethnographic studies
focus with great depth and detail on a group of people or person to learn more about their
cultures and beliefs. Whereas researchers using an exploratory case study design apply
inductive analysis followed by a description of perceptions or a process (Merriam, 2009).
Comparatively, an ethnographic researcher participates in groups’ community affairs or
religious rituals as a quiet observer and then, after gaining the trust of group members
invites participants to talk (Glesne, 2011). Some ethnographic study researchers spend a
year or more immersed in the culture and experiences of a group of people (Glesne,
2011). In contrast, I conducted face-to-face or Skype (with and without video) interviews
with purposefully selected volunteers to explore and gain insight into the perceptions of
parents. Although I described participants’ perceptions in- depth, I did not have extensive
data required for an ethnographic study.
Quantitative versus qualitative research. Some quantitative researchers use 5-
to 7-point scale surveys with large samples of randomly selected participants and then
49
analyze numerical data (Creswell, 2009). Quantitative and qualitative researchers both
state the purpose, establish a problem, formulate research questions, define the research
population, identify preferred methods, develop a time frame for data collection, collect
and analyze data, and present outcomes (Glesne, 2011; Lodico, Spaulding, Voegtle,
2010). I presented these similar elements to show the processes of qualitative research. I
did not pursue a quantitative study design, which would have involved discovering
relationships between independent and dependent variables (Creswell, 2013). I used a
qualitative case study to gain an in-depth knowledge of participants’ perceptions of their
children with intellectual and other disabilities experiences from preschool to 2 years
following graduation from high school or a transition program.
Participants
In this section, I describe the criteria for selecting participants, the sampling and
gaining access procedures, how to manage researcher and participant relationships, and
ethical protection of participants.
Criteria for Selecting Participant
I purposefully selected parents and guardians of children with intellectual and
other disabilities who met the following criteria:
• Participants were parents or guardians of children with intellectual and other
disabilities who graduated from high school or aged out of transition program
one to two years after graduation.
50
• Participants were parents or guardians of children with intellectual and other
disabilities who participated in an IEP or 504 meetings anytime during
preschool to 12th-grade level schooling.
• Participants were involved in any of the 28 nonprofit parent and family
advocacy organizations in the Utah county selected for the study.
I expanded the range of purposefully selected participants to other counties in
Utah after five days if I had not found enough variation in demographic information from
selected parent participants in a specific Utah county.
Number of Participants
Five participants were chosen to allow for an in-depth exploration of a few
parents' perceptions (Creswell, 2009; Lauckner, Paterson, & Krupa, 2012; Polkinghorne,
2005). I used two guidelines to help me determine if I had selected enough participants
(Seidman, 2013). First, I asked if there were a sufficient number of participants and
experiences to assure that others outside of the sample made a connection with the
experiences of participants. Second, I listened to participants until information from
participants emerged and repeatedly diverged into the same patterns of perception.
Sampling Procedures
I used transferability strategies to develop trustworthiness. First, I exercised the
maximal variation sampling method where I purposefully selected participants that had
different demographic characteristics such as disability classification, program type
experiences, and income ranges instead of similar demographic characteristics (Creswell,
2012, 2013; Polkinghorne, 2005; Seidman, 2013). However, because I only received
51
three or fewer responses to the invitation for participants, I added snowball sampling
where potential participants who did not meet the criteria could voluntarily forward the
study announcement or could blog to other possible participants registered with the
cooperating agency. When I determined whom to select with the snowball sampling, I
continued to purposefully select participants by using demographic characteristics. By
including snowball sampling and maximal variation sampling as transferability strategies,
there was a higher likelihood of gathering enough data for a better understanding of
participant perceptions and a more in-depth account of participant experiences
(Polkinghorne, 2005; Seidman, 2013).
Procedures for Gaining Access
Following approval from IRB, there were 28 possible non-profit parent/family
advocacy groups in this study's area. I contacted three of the potential non-profit
parent/family support groups by phone and email because I needed organizational
cooperation before I was permitted to approach volunteers. After three weeks of pursuing
non-profit organizations, only one of three parent/family advocacy groups reached out by
phone, accepted my invitation, and signed the letter of cooperation. Previous to their
acceptance, for an additional two weeks, I shared and answered questions about the
contents of an introduction letter and then requested approval of the accessibility
procedures from the parent/family advocacy group’s administrator. Following these
actions, the designated parent/family official signed a cooperation form. Due to limited
staffing, this organization was not able to post the research announcement in their
newsletter for two weeks. For those two weeks, the designated administrator and I agreed
52
to a link from their website that I could use to add a free blog I began to write about the
study. Overall, I spent up to seven weeks gaining access to potential participants with the
cooperation of a non-profit parent/family advocacy group.
In summary, I posted a blog networked to the cooperating organization’s website
which notified potential parent participants of the study. I had proposed that the
cooperative organization email a flyer to parents; however, this group did not have
adequate staffing to perform this task. Instead, I posted the flyer on the blog. Although I
designed the appearance of the blog flyer and research announcement to be different,
their text was the same. I wrote text that had a brief description of the study, participant
criterion, a contact number, and email address for potential participants to use when they
had questions about being a participant in the study.
I disclosed in conversation and email correspondence the presentation of a gift
card worth 10 dollars from a local grocery store as a token of appreciation for each
participant's volunteer work in the study (Russell, Moralejo, & Burgess, 2000). I added
that all participants who had signed a consent form could withdraw from the study but
could continue to receive a gift card.
Also, I had planned to inform potential participants about the study by
announcing this information at any of the 28 parent/advocacy group monthly meetings. I
intended to introduce the following announcement contents: a brief description of the
study, participant criterion, and my phone number and email address. At the end of the
announcement, I wanted to present a flyer with the same information to each potential
participant. The duration of this announcement was 3-5 minutes. However, I did not
53
attend organization meetings because meetings were convened only during school
calendar months.
Researcher-Participant Working Relationship
In the local area for this study within the state of Utah, I could be considered an
outsider to the community because I was not born and raised in the same area, nor do I
participate in the main religious organization of this region of the western United States. I
attended to cultural norms such as never requesting an interview on a family home
evening night or Sunday. I dressed in conservative attire and used a calm vocal tone. I
conducted these interviews with both the mother and father or solely with the mother, but
I did not meet with the father privately. I learned how to fit in or to be accepted as a
trusted person by paying attention to how the words of the participants are expressed and
by being diligent to any non-verbal language cues such as mood and facial effects (Baur,
Van Elteren, Nierse, & Adma, 2010; Glesne, 2011). By efficiently listening, I inferred
meaning from participant responses and developed a better appreciation for the
participants' situations (Yin, 2014).
I worked with a group of parents who brought a variety of caregiver experiences.
It was imperative that I established rapport, fit in, built trust, and was an active listener to
any response (Glesne, 2011; Yin, 2014). As a speech-language pathologist, I developed a
rapport with students to encourage utilization of therapy strategies that were appropriate
for each student. As a researcher, however, I established rapport to gain information from
the parents that remained highly confidential (Baur et al., 2010). As I kept their responses
to questions in confidence and worked on alleviating participants' feelings of
54
vulnerability, my demeanor and professional practices-built trust with the participants
(Baur et al., 2010; Glesne, 2011). Glesne (2011) suggested that the building of trust
begins with establishing rapport. The participants' rapport and trust were achieved by
being sensitive to the nonverbal language of participants as well as showing the
participants how conscientious, empathic, and engaged I was with them (Glesne, 2011).
Ethical Protection of Participants
I assigned pseudonyms to protect the anonymity and help to preserve the
confidentiality of all potential participants who responded to newsletters, emails, and
blogs. I asked participants to establish contact via phone or email to protect their privacy.
I implemented these efforts to maintain confidentiality as a necessary protective measure
because participants could have colleagues, relatives, or other church members within
100 miles or less of them. Some participants did not want acquaintances and non-
acquaintances in the community to know about their participation because they did not
want to appear as if they were straying from the local social norms. I respected this
privacy by not discussing with anyone the participants' responses (Glesne, 2011;
Merriam, 2009; Seidman, 2013). Other ways to protect their privacy was to organize the
data into summarized, aggregated narratives, and paraphrased text of participant quotes.
Even with scrutiny for the preservation of anonymity and confidentiality, there continued
to be the risk of recognition, so the participants were given pseudonyms for names and a
few locations (Glesne, 2011).
55
I provided forms for the transcriptionist and participants that explained the risks
and precautions taken to protect the rights of participants when a private organization did
not guarantee confidentiality. These forms were:
1. A confidentiality form where I documented a plan to acknowledge procedures
to protect the participant's anonymity and confidentiality.
2. An informed consent form where I shared with the participant an invitation to
participate, risks of vulnerability, rights of the participant to help mitigate the
risks of vulnerability, confidentiality of records, and contact information for
IRB (Seidman, 2013).
The participants were not obligated to stay in the study, and they continued to have
anonymity and confidentiality protection during and after the study was completed.
To protect data storage, I copied lists, graphs, field notes, newspaper articles, and
transcripts of the interviews as well as from member checking notes into PDF copies that
were uploaded to a Cloud lockbox and after five years will be deleted by Iron Mountain.
Iron Mountain is a security company that destroys paper documents and database files. I
gave a pseudonym to all digitally recorded interviews, and then I gave these files to a
transcriptionist.
Data Collection
For this study, I conducted one face-to-face and three Skype conference call
interviews. I also collected documents such as Deseret News articles. I used Deseret
News articles, from 2013 to 2017, to provide a broad stroke source of parents'
experiences related to their children with intellectual and other disabilities as they
56
transition into the community. I used semi-structured interviews to explore in-depth the
perceptions of parents who are caregivers to young adult children with intellectual and
other disabilities (see Appendix B). These conversations with parents assisted with
making connections with community resources and enabled them to have a voice (Foley,
1998). Lastly, when I selected information from Deseret News and conducted interviews
for evidence of credibility, the study contents became a trustworthy source of information
for colleagues and another scholar.
Face-to-Face or Skype Conference Call Interviews
Only one participant wanted to participate in-person for a face-to-face interview.
The other participants chose a phone conference via Skype conference call, either with
audio-only or video. Only two out of the five participants selected a video Skype
interview. The other two participants met via phone conference with audio-only Skype. I
gave these option choices due to the size of the county, the logistics of commuting,
privacy, and due to being home-bound with the care of their young adult child with
disabilities. I arranged for the face-to-face interview and the Skype conference calls to
take place at a mutually convenient time and place. Before starting either of the face-to-
face and other phone conference interviews, I requested of the participants if it would be
acceptable to digitally record the conversation for clearly remembering what they said as
well as for providing a transcript for future analysis.
Seidman (2013) suggested that phenomenological researchers should conduct
three 90-minute interviews that cover the following areas—life history, experiences, and
reflection. Although Polkinghorne (2005) agreed with Seidman (2013), he recognized
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that the majority of qualitative study interviews took 60-minutes. I conducted one 60-
minute interview with the married mother and father and each of the three mother
participants. Comparatively, I did not need three 90-minutes’ interviews because I was
not exploring the life history and critical reflections of parents. Instead, I interviewed the
parents in one session to explore the parents' experiences and obtained demographic
information. As a result, I utilized an exploratory method of data collection from
Polkinghorne (2005) to address case study design procedures plus time and budget
constraints.
I used a digital recorder and a laptop with a microphone as a back-up to collect
data from face-to-face and Skype conference call interviews. Only the voice output from
Skype video remained digitally recorded to protect the identity of the participants.
I asked presupposition questions which encouraged thoughtful responses (Glesne,
2011). Even though presupposition questions were used to assist with participant
response completeness, limit interviewer bias, and facilitate organization of interview
responses (Allen, 2014; Glesne, 2011; Hancock & Algozzine, 2011). I also knew that the
participants who recalled experiences over time might experience faded memories of the
past (Denzin & Lincoln, 2004). To come as close as possible to the selected participants'
experiences, I learned from the first interview to focus on parent experiences of their
adult children with disabilities from middle to aging out of a transition program or
graduating from high school because all parents experienced faded memories before
middle school time spans.
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I also requested demographic characteristics about economic status based on
income tax range, children's, classification, gender, ethnicity, age range, parent's
occupation, and type of employment for a young adult child with a disability. I inquired
about their experiences with applying for and contacting services after their son or
daughter had aged-out of transition programs or had graduated from high school as well
as transportation and isolation issues, along with finding out if there were any family
lifestyle changes. Additionally, I solicited information about services provided while
attending A, B, or C transition programs and about how the special education and related
service providers of these programs prepared them for life after their son or daughter
aged-out. I managed the interviews for over a period of two weeks.
Member Checking
I used member checking as a trustworthiness and credibility strategy. I provided
transcription copies to the participants to check for content plausibility (Seidman, 2013). I
emailed a pdf (read-only) copy of the transcription to each participant after two weeks of
transcription completion. I scheduled a 10- to 15-minute member checking session via
Skype conference call because I had moved out of the state of Utah. During these 10- to
15-minute conference calls, we briefly referenced and discussed their perspectives about
parent advocacy, teaching methodology, and social and financial burdens.
Additional Data
The logged field notes contained thoughtful comments, analysis of interview
procedures, and a critique of data collection methods. I used these recorded records to
solidify credibility and transferability content in this study. I triangulated field notes with
59
transcribed interviews and with material from public documents from Deseret News
articles.
Evidence of Quality and Procedure of Data Collection
I developed an audit trail by keeping logged notes of transcribed interviews for
confirmability purposes. Within a time-span of 48- to 72-hours, a transcriptionist
transcribed interview data. After receiving the transcript from the transcriptionist, I read
and listened to the same digital recording and made notes in the transcript margin about
voice inflection, pauses, and tone of voice (Ryan, Gandha, Culbertson, & Carlson, 2014).
I used this procedure to reflect on the words said by each participant (Freeman, DeMaria,
Preissle, Roulston, & St. Pierre, 2007; Glesne, 2011). Lastly, I judged how much of the
interview could be useful for the study, and I created aggregated summaries from all
transcripts. I used the log to self-critique the interview experiences. I wrote the following
five components into the log. First, I wrote a list of questions asked. Second, I wondered
if there were other issues I should have requested to promote elaboration from the
participants. Third, I flagged in interview notes where I should begin at another
interviewees' session. Fourth, I noted any particular circumstances that I felt affected the
quality of the interview and any other comments that prepared me for subsequent
interviews. Lastly, I identified tax code data about gender, socioeconomic ranges,
ethnicity, age range, and occupation (Glesne, 2011).
Contents of Notes
After each interview to promote trustworthiness, I evaluated the effectiveness of
the interview process by using a dependability strategy (see Appendix C) that was
60
suggested by Hollway and Jefferson (2000): first, what did I notice? I implemented this
question by continually searching for discrepancies in data collection and data analysis.
Thus, I did not ignore relevant points of view. Second, why did I notice what I noticed?
When I asked this question, I reflected on what I had observed and heard. I used this
strategy to help me to think critically. Third, how did I interpret what I noticed? I
achieved applicable self-reflection by spending appropriate amounts of time with
participants to build rapport and trust. Lastly, how did I know that the interpretation was
the "right" one? I knew the interpretation was correct by analyzing participant responses
from the conceptual framework of CDT, reflecting upon their answers, and
acknowledging limitations in the study.
Role of Researcher
I have been a speech-language pathologist for 25 plus years in the private,
medical, and public education sectors. I became interested in transition services when my
daughter received specialized instruction and support in high school. Even though she
participated specialized education in the high school, she struggled to find employment,
guidance, and financial assistance for social services and community college after
graduating with a diploma from high school. In Fall 2015, I attended a NAMI meeting to
learn more about a family member’s mental health and how to be a resource for him or
her. I did not anticipate contact from parents in NAMI meetings because I was the only
parent in the group with a child over the age of 18. The other parents had children who
were three years to 16 years of age. Also, I did not disclose any information about being a
61
student at Walden University. However, a few parents knew that I was a speech-language
pathologist for the same district where their children attended school.
I had to be mindful of my role as a researcher. As I asked parents about their
perceptions, I continued to reflect on how or why questions as I collected data to be
savvy to contradictory information. Secondly, I stayed flexible to unexpected occurrences
if there was a contradiction, and then I gathered more evidence through a literature
review and stated the limitations of the study. Lastly, I avoided biases by sharing any
contradictory evidence even if it disagreed with the research questions.
Data Analysis
In this section, I explain evidence of quality and data analysis procedures and
summarize trustworthiness quality indicators.
Evidence of Quality and Data Analysis Procedures
For coding the data, I sorted and categorized Deseret News articles, and field log
notes into a priori codes that were pre-determined and aligned with research questions
RQ1, RQ2, and RQ3 about parents' perceptions to self-critique the data collection and the
interview transcript content from selected participants. When applicable, I gathered the
interview content, and subcategorized codes into CDT, teaching methodology, pedagogy,
and work experience of teachers from preschool through transition program or 12th-
grade, teachers knowledge of resources, demographic characteristics, children with
intellectual and other disabilities, self-determination, communication, and self-care skills
items. I also added the subcategories of family expectations and monetary resources,
parents’ understanding of transition services, and their role as advocates. After that task, I
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completed and sorted these analytical subcategories into subunits for gender,
racial/ethnicity, disability classification, sheltered versus non-sheltered workshops, and
student-focused planning.
I used analytic memos in the margins of the transcribed interview. Then I
designed a matrix/table to organize further developing themes (Saldana, 2013). I used a
matrix or table as a method for labeling, sorting, and accessing information acquired
through interviews (Hancock & Algozzine, 2011; Miles & Huberman, 1994).
Additionally, I used self-reporting and introspection from interviews to explore themes
because self-reporting and introspection comments are considered a critical component to
gathering data about the human experience (Polkinghorne, 2005).
I used additional procedures to remain honest, flexible, and to tolerate any
ambiguity in the study. Dey (1993) suggested that any category is not final and should be
continually modified and updated through interactions with the data. Therefore, I had to
be mindful of the risk of fitting qualitative data into a set of codes and categories that
were not applicable when analyzing data.
To critique this qualitative study, I also used some of Rocco's (2010) guidelines
for critiquing qualitative studies. First, I had a rigorous methodology and data collection
procedures that were grounded in relevant literature. And secondly, I had a clear
explanation of sampling strategies, data analysis process, discussion of study
significance, and implications of research results so peers would be able to replicate or
review this study for their purposes.
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Summary
I maintained trustworthiness by using credibility, transferability, dependability,
and confirmability strategies or tools as quality indicators. I selected and purposely chose
participants with maximum variation and snowball sampling. The results of data and field
notes were analyzed and stated to transfer knowledge from one researcher to another.
Secondly, I provided notes on the interview process with self-guided interview reflections
to demonstrate dependability. Additionally, I developed an audit trail by keeping logged
records of transcribed interviews and by using the log to self-critique my interview
experiences for confirmability purposes. Lastly, I used member checking to ensure that
data and tentative interpretations of that data are credible. I triangulated field notes with
transcribed interviews and public documents from Deseret News articles.
Data Analysis Results
Process for Finding Data Results
I generated data by purposefully selecting participants with maximum variation
and snowball procedures. As a result, I had five parent participants of young adult
children with disabilities who had either graduated from high school, planned to attend a
postsecondary institute or transition center, or had aged-out of a transition program from
2013 to 2017. Each parent lived in either an urban, suburban, or rural area and worked
outside of the home with an annual household income of between $35,000 and $95,000.
Lastly, the parents in this study were caregivers for their young adult children diagnosed
with medical and educational classifications of other health impaired, ASD, intellectual
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disability, Down syndrome, anxiety, pervasive developmental disorder-not otherwise
specified (PDD-NOS) and nonverbal learning disorder (NLD).
I gathered data by interviewing all five parents for 60-minutes and by reviewing
Deseret News articles from 2013 to 2017, explored other sources of information from
professional, state and federal websites, and examined field notes to determine
dependability of the data. For credibility, I digitally recorded all five interviews and then
spent 15- to 20-minutes reflecting on each interview to decide how I could gain a deeper
understanding of their experiences without biases. And after each transcription, I
reviewed and checked for accuracy of interpretation and any other additional perspectives
from the parents.
I recorded additional data by occasionally jotting down notes about gaining access
procedures and about reflections about an interview. I also designed word tables to help
with the organization of data in preparation for data analysis. I triangulated all data from
field notes, reflections, Deseret News articles, and parent quotes. Then, I aggregated
information from the parent participant’s transcriptions.
Findings
Local Problem Data
I discovered from a priori knowledge and data obtained from the interviews.
There is a gap of collaboration and timely access to resources about (a) transitions from
middle through high school, (b) postsecondary information, (c) services following aging
out between parents, teachers, state/federal, and non-profit agencies, and (d) financial and
social service supports in the local practice. From the perspectives of parents of children
65
with intellectual disabilities or other disabilities access to updated resources would lead to
better choices in guiding their children. When parents of children with intellectual
disabilities or other disabilities received transition service resources; it improved the
parents understanding of how to access services. Plus, the parents then had a less
complicated way to access services (a) between transitions from middle through high
school, (b) for school district aging out and postsecondary options from outside providers
specific to community living, employment, and higher adult education, (c) for financial
independence and DSPD support, and (d) about employment and community
opportunities and social isolation.
I purposively generated, gathered, and recorded data to gain a better
understanding of how parents perceived transition services which specifically focused on
the phenomenon of where there was a lack of access to services when students with
intellectual disabilities or other disabilities transition from preschool to 12th-grade level
schooling. However, the parent participants were unable to recall with certainty events
from preschool up to middle school, but parents presented better perceptions about their
young adult children aging out of a transition program or graduating from a high school.
The parents of children with intellectual and other disabilities shared minimal
information about any financial burdens. However, parents shared transparently their
concerns of social isolation after their young adult children graduated from high school or
aged-out of a transition program.
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Coding and Data Synthesis
I organized the coding and data synthesis into two areas: (a) a priori information
themes and (b) summation narrative themes to systematically explain the findings of this
study.
A Priori Information Themes
I developed a list of possible categories from previous literature searches. These
literature search categories were: teaching methodology, pedagogy, work experiences,
teacher knowledge of resources, demographic variable, self-determination,
communication, self-care, family expectations and monetary resources, how transition
services work, parents as advocates, and legal trusts. I reviewed 25 articles from the
Deseret News from 2013 to 2017 to obtain additional a priori information for this study.
When I compared the topic derived from the literature review and Deseret News articles;
I discovered 15 articles out of the 25 articles that emphasized same inductive themes
from parent quotes. Seven themes emerged from parent quotes I then determined the
number of parent quotes that were appropriate for each theme as shown in Table 1.
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Table 1
Number of Parent Quotes in News Articles By Theme
Themes
Number of parent quotes
Teacher Methodology and Pedagogy
5
Teacher Knowledge of Resources
2
Communication
1
Self-Care
1
Family Expectations and Financial Concerns
5
Parents as Advocates
4
Legal Trust
2
Profile of Participants
I interviewed five participants from rural, suburb, and city locations within the
study area. All participants were Caucasian within the age range of 30- to 70-years of
age. The participants shared information about being the parents of a young adult with
other health impairments or Down syndrome, intellectual disability, or ASD. The
participants work in the fields of education, county or federal government, or healthcare.
Two of the participants were married, and I summarized their story in one narrative rather
than two separate accounts. One of the parents was a single working mother. The other
two parents were married, and only the mothers participated in the study. After all four
narrative profiles, I wrote the meanings of findings as related to alignment with RQ1,
RQ2, and RQ3 and how some narrative content connected to a priori knowledge from
literature reviews and the Deseret News articles.
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Profile of Acke and Abby
We are Family
This story takes place in a suburb outside of a major city in the study area. The
characters are Acke (the father) and Abby (the mother), and they live with their only
young adult daughter. Their daughter did not have to share time with anybody or another
person’s interests to learn how to manage conflict. Acke worked in the field of education,
and Abby worked for the county.
School and Agency Programs
Their daughter was classified as other health impaired. The IEP team decided on
this classification because their daughter demonstrated the following characteristics:
anxiety, nonverbal learning disability, and sensory integration disorder. Due to this fact,
Abby thought that her daughter’s social skills appeared to develop slower than peers her
age. As a result, their daughter participated in special education instruction for one hour
of the day from first to twelfth grade. Acke and Abby’s daughter has attended elementary
and secondary level public and middle-level charter schools. During their daughter’s
middle school years, sixth through eighth grades, the parents transferred her to a charter
school because the class sizes were smaller—one teacher per every ten students.
Comparatively, at the time, public school middle schools had a ratio of one teacher for
every 40 students. After three years, the charter school changed its focus back to
elementary curriculum. The administration at the charter school had to modify the charter
school’s focus because there wasn’t enough funding to fill middle school teacher
positions with State standard endorsements and qualifications.
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High School. As a result of the charter school closing, Acke and Abby re-enrolled
their daughter into a public high school, with ninth through twelfth grades. Their
daughter attended as a freshman student, and Acke worked as a teacher at the same high
school. In this way, he had access to most educators and administrators. It was during this
time that Acke advocated for and assisted his daughter more directly. Abby shared that
during this period in their daughter’s life, Acke was able to advocate for their daughter
more effectively than she could because he knew the high school system better. Previous
to this time in their lives, Abby was the primary advocate for their daughter.
Then in their daughter’s later years of high school, Acke transferred to a different
high school to work as a counselor. Both parents reported that the special education
teacher in the high school system provided them with the most resources and guidance on
how to find a job and college assistance for their daughter before graduation.
Graduation. Acke and Abby and their daughter celebrated her graduated in June
2016 with a diploma. As of August 2016, their daughter continued to work part-time as a
custodian at school in their county. Besides academic experiences, Acke and Abby also
noted how work experiences improved their daughter’s ability to be socially confident
and demonstrate self-satisfaction more naturally. Their daughter’s work experiences
taught their daughter how to be on time for work and to be responsible for job duties even
though she does not like specific tasks of her job. During the summer of 2016, Acke and
Abby had met with disability services at a local university. They learned that the
university had a smaller satellite campus close to their home.
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What Does the Future Entail?
In high school, the counselor and mostly the special education teacher at the high
school encouraged the parents to apply for a VR grant. Just before the Utah legislation
cut funding for such a program due to state fiscal priorities, their daughter accepted grant
funding. This award and a small scholarship earned from their daughter’s academic
performance will supplement their daughter’s education funding. Acke and Abby
received no state assistance and managed their daughter’s health care and other expenses
with private insurance provided through employment at their jobs. They both found that
the cost of mental health services for their daughter had impacted the family budget, and
for this reason, they were thankful that their health care covered mental health services.
They had enough money to cover out of pocket medical costs.
Profile of Bahar
We Are Family
This story takes place in a rural area outside of a city in the study area. Bahar used
to be a stay at home mom, but as the children grew up, she decided to work in the field of
healthcare. Bahar lives with her husband, a son and two daughters. She gave birth to her
daughter with disabilities after she had her son. Her daughter always wanted to be like
her brother and sister, so she would share stories with her friends that included the new
vocabulary learned from movies and conversation with her brother and sister.
Bahar also established a parental support group that meets a few times per year
where the parents share their resource knowledge with each other. Furthermore, she
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provides liaison support for new mothers of children with disabilities by giving contact
information to parents with similarly aged children with like disabilities.
School and Agency Programs
Bahar’s daughter received a classification of Trisome-21/Down syndrome per
medical guidelines and intellectual disability per IEP team decision. Her daughter
participated in specialized instruction from preschool to the 12th-grade in a rural public
school system. Bahar described how her daughter learned life skills such as how to ask
for help, along with different reading and math strategies, speech techniques, and social
skills when she attended a transition program. Before her daughter attended the transition
program, the teachers from preschool to 12th-grade mostly concentrated on academics
instead of on life skills.
Transition program. This transition program is new to this rural school district.
Before the more modern program developed, the students with significant disabilities
were given a title, Exceptional Senior (pseudonym) and then stayed at the high school
until the age of 22 years. The new transition program opened two years ago. The students
now go through the 12th-grade at a high school, and then they leave to go to a separate
application. The teacher for the transition program used curriculum that concentrated on
life skills and job experiences. According to Bahar, the transition program was only to
focus on life skills and job preparation because students already had learned academics to
match their potential [learning ability] in high school.
Job site. For the past two years, Bahar’s daughter tried out different job site
experiences as a volunteer with the assistance of a job coach. At the time of this
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interview, her daughter worked without a job coach as a paid employee at a gas station
where she completed a few job tasks such as stocking the shelves. She also helped a
small group of preschool school students.
Her daughter used to be happy with isolating herself in her room. Now, her
daughter showed a positive attitude towards life and enjoyed being surrounded by people.
Bahar also acknowledged the rural community where the neighbors and business owners
are kind, giving, and accepting of her daughter’s disability.
What Does the Future Entail?
When Bahar’s daughter was born, she immediately applied for state assistance.
During this time in life, Bahar and her husband were college students with their first
baby. Her application stayed on a waiting list for only one year. As a result, she received
state assistance for respite care and medical insurance since her daughter was a baby. Her
strategy was to apply early and keep calling and pestering the State of Utah Social
Services office and the support coordinator. Bahar explained that she advocated for
Social Security Insurance (SSI) when her daughter was a baby to assist with the cost of
care. Her daughter continues to receive SSI assistance.
Life after aging out. Bahar visualized her daughter taking local community
college courses in art and creative writing and then writing children’s literature at the
core reading level. Even though, Bahar’s daughter will be aging out of a transition
program. She did not think her daughter had made enough gains to graduate from the
transition program.
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Legal trusts. Guardianship had not been set-up for Bahar’s daughter because it
was costly. Besides that, because her daughter with Down syndrome was high-
functioning, Bahar felt that she would be taking away her daughter’s independence.
Profile of Gabby
We are Family
This story takes place in an urban area of the study area. Gabby worked outside of
the home in healthcare, and the father worked outside of the house as well. Her daughter
is the youngest child, and the brother is the oldest sibling in the home.
School and Agency Programs
Gabby’s daughter was diagnosed with Down syndrome at birth and classified
with intellectual disability by the IEP team.
Middle school. In middle school, Gabby’s daughter’s learning performance was a
bit ahead of the rest of the students in the classroom but not high enough for the general
education curriculum. When her daughter attended middle school, her teacher did not
provide homework. Gabby was frustrated when no homework was sent home because she
thought her daughter needed repetition to learn and retain academic information. In fact,
Gabby did not care what type of homework would be assigned. Just one worksheet a day
would have been beautiful to her.
High school. In contrast, the high school provided a simpler version of high
school level of science and arts. Gabby’s daughter became a part of doing botany projects
and participating in Romeo & Juliet. The high school IEP team discussed and
implemented social opportunities within the school instead of attending a transition class.
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During the school store experience, Gabby’s daughter learned how to interact with
different people, how to make eye contact with the customer, and how to ask the students
questions instead of them asking her questions. She also learned how to monitor the
credit and debit operation of the store and to count back change.
Related services. Gabby’s daughter received physical therapy for a limited time
and speech therapy for quite some time (Gabby did not provide an exact timeline). Both
services were right for her daughter. Even though her daughter’s speech improved, she
continued to have pragmatic language deficits such as when she could not keep a
conversation going for more than two reciprocated turns. There were no related speech
services on her daughter’s IEP for the transition program.
Teacher Preparation. Overall, this mom felt that her daughter had some
prepared and some unprepared teachers in the public-school system. She felt as though
some teachers never tried to set higher benchmarks for her daughter. It looked to her as if
the teachers taught content on a level that would be a good fit for most of the students in
the class but not for the few others because the teachers seemed to be too busy to address
each student’s learning needs. Additionally, teachers did not know a lot about extra
community services. Gabby could recall only one high school teacher who had shared
information with her about different community services. She also believed that special
education programs managed money inappropriately. Gabby emphasized that the special
education system needed repair before services addressed the individual needs of
students.
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Transition program. As of Fall 2016, Gabby’s daughter entered a transition
program, and the curriculum changed from academic skills to life skills—budgeting and
shopping for clothes and groceries. In addition to these skills, her daughter went out into
the community to explore different job options. Gabby stayed involved with educational
issues by talking to other moms who parented other young adults with Down syndrome.
According to Gabby, these other mothers continued to be concerned about previously
learned math, reading, and writing skills because teachers only taught life and vocational
skills in the transition programs.
What does the Future Entail?
Both parents work to assist with their daughter’s financial needs. Plus, her
daughter has been on a waiting list to receive SSI since birth. However, Gabby felt
fortunate that she and her husband made enough money to support their daughter’s needs
because they knew of other families who struggled financially to take care of their son or
daughter’s expenses.
Caregiver. Gabby ultimately feels that she and her husband will always be their
daughter’s caregiver whether she lives on her own or with them. They have thought about
planning and setting up care for their daughter before either of them dies. Moreover, they
did not expect their son who is in his early twenties to take on this responsibility.
Additional remarks. Gabby spoke about how there are enormous amounts of
resources for parents. Unfortunately, the lists of resources are too extensive for many
parents to find and to consider. She emphasized that parents needed an advocate or a
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liaison that connected them to appropriate services because parents wanted a direct line
of communication to different organizations.
Profile of Rafiq
We are Family
This story takes place in a suburb outside of a major city in the study area. Rafiq
was a divorced and single parent, and she works for the government. The mother
described herself as the boss, disciplinarian, comforter, and soloist for her daughter.
When Rafiq received respite care for one year, she was relieved to have a few hours to
herself. She also saw herself as an interpreter between her daughter’s literal
understanding and the reality seen by her other children and other family members. Rafiq
felt that some family members didn’t understand ASD and what it would take for her
daughter to be “normal,” like them. Her daughter did quickly become upset because she
interpreted figurative words literally, and then Rafiq had to be the peacemaker between
her daughter and other family members.
School and Agency Programs
Rafiq’s young adult daughter with ASD and intellectual disabilities participated in
an intern program. This intern program had a community partnership with local and
federal government as well as local businesses. These community business partners
agreed to train an intern student. If the student did a great job, he or she obtained jobs as a
full-time employee.
Middle school and high school. Rafiq described her experiences with teachers as
a close network of specialists who seemed to know how to help all students with special
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needs, not only her daughter. The educational community openly considered the
information presented by other mothers and distributed any applicable new information
to other parents. In the past, there had only been one complicated relationship with a
teacher at the middle school. Rafiq did not perceive it as an unresolved relationship with
the middle school teacher. Instead, she acknowledged that her daughter was going
through the beginning stages of puberty. Furthermore, Rafiq perceived that the teacher
was overwhelmed, which contributed to a challenging middle school year. When she
attended high school, her daughter participated in academic classes modified for her
cognitive abilities.
Transition center. At the transition center, the staff concentrated on teaching
Rafiq’s daughter life skills such as how to make a change and do her laundry. Rafiq
daughter’s first internship job was transporting residences to activities in the recreation
room of long-term care or acute care facility. She has also worked as a custodian at a
movie theater and a bowling alley.
Each time Rafiq’s daughter participated in a job she learned how to make a list of
tasks and how to check things off the list. These positions taught her how to be respectful,
how to work cooperatively with co-workers, and how to keep track of her hours worked
on a time card. Her daughter also learned how to make a change at the grocery store and
managed bus schedules. Also, Rafiq daughter’s transition program had an apartment and
laundry facilities to practice independent living skills.
Rafiq felt that the transition program taught her daughter how to say what she did
not like, but the school curriculum did not focus on teaching taking small risks when a
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person feels a bit anxious about a new experience. Rafiq shared details of how the
consequence of taking a bit of risk brought an increased feeling of a sense of
accomplishment. She reported that knowing real fear and things that made her daughter a
little nervous needed addressing along with self-determination skills.
Community partnership program. The community partnership program only
had funding for six months out of the year. Rafiq had to find things for her daughter to do
when she was not participating in the community partnership program. Examples of what
Rafiq was asking herself are (a) How can I keep my daughter exercising, (b) How can I
get her to volunteer somewhere, and (c) How can I get her out of her room? Rafiq’s only
complaint about the community partnership program was that it was only in operation for
six months a year.
What Does the Future Entail?
At this stage in life, Rafiq’s daughter was not confident or comfortable with
others. She has a lot of emotional dependence on Rafi which made it difficult for her to
leave town even when there was a relative to take care of her daughter. When her
daughter was younger, she did not seem to be aware of her differences among other
students. At this time, Rafiq’s daughter had become more conscious of her differences,
and this awareness had shaken her self-confidence. Nevertheless, Rafiq’s daughter had
improved her life and work skills. In spite of these improvements, her daughter continued
to isolate herself in her bedroom because she did not want to try new experiences.
Rafiq was thankful for having the money to support her daughter. She knew of
other people who were struggling financially. Rafiq knew that she had to plan for the
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future for her daughter, but this planning had not taken place yet. As long as her daughter
continued to respect her motherly authority, Rafiq did not see the need for guardianship.
A Summary of Outcomes from Interviews and Other Sources
Each parents’ perception provided a lens into the experiences of their young adult
children with disabilities. I organized the five parent participants’ experiences into the
following themes:
1. Charter school versus public school;
2. Class size;
3. Programs from middle to high school;
4. Educational classification of disability;
5. Classroom environment and teacher communication;
6. Preparing for college;
7. Work experience and then employment;
8. County, state, federal, and private businesses as partners;
9. Parent advocate;
10. Social isolation;
11. Monetary concerns; and
12. Future Planning.
I narrated these themes from the applicable information gathered from the interview from
each participant. I also shared perceptions that directly applied to each parent’s
experience.
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Charter School versus Public School Experiences
Acke and Abby, parents of a young adult with other health impairments,
described how the middle school charter school and the public high school used different
teaching methodologies and pedagogy. The charter school had smaller class sizes. And
although the charter school teacher was willing to learn how to help the daughter via
information from parents, the general education teacher struggled with meeting their
daughter’s specialized needs in the general education classroom. Other parents
experienced smaller class sizes at the middle school charter school and witnessed better-
specialized attention for their children when the charter school staff had specialized
credentials. A mother of a young adult son with ASD made the following statement about
a dedicated charter school in Utah:
The [program] has given him an opportunity to interact and develop friendships
with like-minded youth also challenged by ASD in a collaborative environment. It
removes the grading, judgment, and evaluation present in school replaced with
collaboration, responsibility, and pride in accomplishment (Bench, 2015, p. B1,
B8).
Just as Acke and Abby, Bahar, Gabby, and Rafiq noted how teachers with
specialty credentials and experience appeared to have a genuine interest in their
children’s education. Acke and Abby also described how teachers with appropriate
training and who took an interest in their daughter’s education obtained the best results,
year to year. Plus, Rafiq explained how her daughter had a challenging middle school
year. Although she did not fault the teacher, Rafiq shared how the teacher had limited
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behavioral experience which impacted her daughter’s academic progress. As a result,
teachers who stayed current with methods and philosophies appeared to present a genuine
professional interest in young adults with disabilities.
Class Size
Acke and Abby’s daughter went from a small class ratio of ten students to one
teacher at the charter to larger classroom settings of 40 students to one teacher at the
public high school. To reduce the effects of that transition, Acke provided additional
support for his daughter because he worked as a teacher in the same high school as she
did. Bosworth (2014) showed that students who struggled with learning did better in
reduced sized classrooms although students who performed better academically were not
affected by class size. Along with that finding, Hattie (2012) also determined from an in-
depth meta-analysis that reducing class size from 25-30 students to 15-20 students
indicated a small amount of change. Acke and Abby provided educational support
opportunities for their daughter intuitively without reading research literature. In this
case, Acke and Abby’s daughter transitioned from a small to a more significant learning
environment with the implementation of social and emotional support. Their daughter
received a small amount of practical education in a small classroom setting which could
have influenced their daughter’s academic progress.
Programs from Middle School to High School
Except for Acke and Abby, each parent participant described different curriculum
emphasis from middle to high school. The program curriculum for Acke and Abby’s
daughter with other health impairment remained the same in her IEP year after year. She
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attended only one specialized instruction class, and the rest of her classes were in
generalized instruction. Bahar shared how her daughter with Down syndrome maintained
the same specialty program from preschool to high school. The teachers taught
specialized reading, writing, and math instead of life skills. Gabby had a daughter with
Down syndrome as well, and she expressed frustration with the specialized instruction
system. In middle school, Gabby’s daughter had learning abilities that were higher than
the rest of classroom but not high enough for general education classes. From Gabby’s
perspective, it appeared that the middle school program mostly fit the needs of many
students instead of a few of the other kinds of students. At the high school level, Gabby
noticed a shift in focus where academic content classes modified subject areas to her
daughter’s learning needs. The teacher provided her daughter with job experiences and
was not too busy to address her daughter’s needs within the high school setting. Rafiq’s
memory of her daughter with ASD and intellectual disability were vague. She stated that
high school mostly concentrated on modified academic subjects to address her daughter’s
cognitive needs. The participants in this study witnessed how their children experienced
different methods of teaching that either increased or decreased the learning potential of
their children.
Educational Classification of Disability
Gabby and Bahar knew their two daughters were likely to be diagnosed with
Down syndrome at birth. However, for educational purposes, their children were
classified as an intellectual disability. As a result of early diagnosis intervention, only
Bahar’s daughter received community, state, and federal funds. Other parents did not
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have the same experiences with their children in the public-school system as Gabby and
Bahar. Tanner (2016) interviewed a mother who said, “She [daughter with ASD] didn’t
meet the stereotypical behaviors…It was always the hands-off approach. People [doctors
and teachers] dismiss it [ASD] in girls” (p. A3).
Similar scenarios happened with Rafiq’s, Acke and Abby’s daughters. Rafiq
described how the medical specialists diagnosed her daughter with PDD-NOS, then with
ASD. The educational staff on the IEP team settled with the classification of intellectual
disability and ASD. Acke and Abby had to contact medical professionals to determine
why their daughter was not performing academically like her peers. The medical staff
diagnosed their daughter with anxiety, Non-verbal Learning Disorder (NLD), and sensory
integration problems. The first-grade IEP team decided on other health impaired as an
educational classification. The participants with young adult children with Down
syndrome received earlier intervention than the participants with young adult children
with ASD and other health impaired.
Classroom Environment and Teacher Communication
Acke and Abby reported that the special education teacher in the high school
system provided them with the most resources and guidance on how to find a job and
college assistance for their daughter before graduation. Abby added that it is essential for
parents to be involved in their children’s education by showing how you appreciate the
teacher and at the same time, monitoring your children’s annual IEP progress. Also,
Rafiq, Acke, and Abby reported how teachers with appropriate training and who also
took an interest in their daughters’ education obtained the best results, year to year. Acke
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shared that parents and educators should also discuss subjects about how a chemical
interaction between the brain and medication could take two to three weeks, and
therefore, psychology and counselor strategies should be used to help the patient cope
with this difficult period. Or a mental health professional should maybe use psychology
strategies before administering medication. Anderson (2014) wrote an article about a
mother of a son with mental illness who needed additional supports due to the stigma of
mental illness. She disclosed to Anderson (2014),
The people who say thank you outnumber the detractors at least 10 to 1. In
addition to getting help for my son, I am connected with advocates and “dragon
moms” … I don’t feel alone and isolated anymore. It’s not just me. (p. A3).
Unlike the mother of a son with mental illness, Bahar communicated how the
teachers and parents in this rural community shared and collaborated on the educational
and vocational needs of students, and each group was willing to learn about new
information. In contrast, Gabby perceived classroom environment and teacher
communication differently from the other parent participants. She believed that too much
of the school budget monies go towards classroom resources instead of fixing broken
systems and policies.
Preparing for College
Acke and Abby described how their daughter had graduated from high school and
worked as a part-time custodian. They believed work experiences outside of high
school—working as a landscaper for a year and a part-time custodian—helped to build
her self-confidence and self-satisfaction in preparation for part-time or full-time college
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enrollment in the Fall of 2016. Also, their daughter’s special education teacher had a lot
of knowledge about finding VR funding and college grants or scholarships for the
postsecondary transition.
The process. Abby described how she and her husband learned about funding
through contact with the VR agency and with the counselor at the high school. Abby’s
description of the counselor at her daughter’s school showed how effective a positive
relationship between staff and parents could bring about opportunities for the children
with intellectual and other disabilities. Abby shared this:
A small portion of the counselor and a significant part of her special education
teacher encouraged and helped us through the course of getting together with VR
earlier on. Perhaps a year ago we made a connection there through our special ed.
And they work closely together, and I don’t know if you know the funding has
changed drastically for that. So, we got in on that before everything ended
drastically. And so, she’s [their daughter] been followed, minimally for that year
of …her senior year…but then as that was coming to a close, we were able to
apply, and they’re helping her with her college now. So, VR gave her [their
daughter] ideas for how to get started, who to contact.
Acke added, “So we have taken advantage of a lot of the resources that are available….”
Both parents and their daughter had met with the disability services office at a local
college. In the summer of 2016, Acke and Abby and their daughter continued to
contemplate whether or not to attend part-time or full-time college classes.
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Even though Bahar’s daughter did not graduate with a diploma, she wanted her
daughter to experience college life. Bahar revealed that her daughter had adequate
writing skills to write children’s books. Other parents have trusted a college’s
accommodations only to be let down. The mother of a young adult son with ASD said,
“We were led to believe there was more support than there was” (Pope, 2013, p. A10,
A11). This mother found another college that provided the accommodations required for
her son. Parents of young adults with intellectual disabilities or other disabilities wanted
their children to have similar opportunities and experiences as other young adults without
disabilities.
Work Experience and then Employment
All five participants’ daughters with a disability had participated in chores at
home or work in the neighborhood or the community during and after high school. Acke
and Abby’s daughter worked consistently at a part-time job as a janitor. Gabby’s
daughter has worked as a dog sitter for vacationing neighbors and participated in the store
at the high school. Gabby’s daughter transitioned into a transition learning center in Fall
of 2016. Bahar’s daughter participated in a job coaching program in cooperation with the
transition program. According to Bahar,
the transition program did a class that was all about jobs and what do you want to
do and different skills to learn. They (the school staff) were able to find jobs in
the community, and we would have job coaches go in and help them, and that’s
how she was able to go from volunteering at a job into a paid position without a
job coach.
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For the last couple of years, her daughter has worked a gas station and at an
elementary school where she helped small groups of children. At the interview in July of
2016, I learned that Bahar was researching options for her daughter after she ages-out of
the transition program. Bahar felt that every program was so different, so she didn’t think
that there was a plan for her daughter at this time. Bahar’s daughter with intellectual
disability performed expected job tasks by her employer without coaching. As Bahar’s
daughter ages-out of a transition program, her mother searched for a job that matched job
performance with her daughter’s job preferences.
County, State, Federal, and Private Business as Partners
Rafiq was the only parent in the study who experienced a service delivery model
after her daughter aged-out of a transition program. Rafiq’s daughter has aged-out of the
school district transition program. In the community where she lived, the county and
other agencies have developed an “All Pathways.” (pseudonym). There are a few other
agencies who participated in this service: (a) Vocational Rehabilitation, (b) Plains
(pseudonym) Adult Rehabilitation Center, (c) a county school district in Utah, (d) U.S.
Department of Education, and (e) Health and Human Services for Young People with
Disabilities. All agencies participated either in funding or staff support. People in these
organizations actively pursued community business partners and provided financial
incentives to those partners. After a community business partner contract established a
site for training, the agency staff placed adults with disabilities into internships which
sometimes lead to a permanent employment position.
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Rafiq’s daughter interned at a care facility that had both a long-term care side and
an acute side. She helped the recreation director by taking residents to various activities,
passing out games to them, and delivered the newspaper to residents’ room. Rafiq
reported that her daughter did satisfactory work at this job but “it was not her favorite.”
Rafiq’s daughter did not like to tidy up or clean things up at this internship site. In the
summer of 2016, Rafiq’s daughter interned at a retail store where she did a bit of
cleaning, pulled, sorted and returned signs to the shelves, attached size stickers on shoe
boxes, took clothes out of boxes then laid them out for hangers and the steamer. Rafiq
thought that the cleaning type jobs were not her daughter’s favorite because she had
coordination issues. “Plus… just like anybody else, it is not a job that she likes, so she is
not keen on doing a fantastic job at it. But I think it did teach her the idea of the discipline
aspect of it that this is what work is like.”
In high school, Rafiq’s daughter didn’t like the work duties at the bowling alley
and the movie theater where the staff “took a bit of a shine to her.” After completing
work, “there was a reward for her—small popcorn and drink. These acts of kindness by
the staff made her “a lot happier about working there.” Rafiq thought that her daughter
learned that “you work first, and then you get a reward after, which is sort of like the
basic idea of work, kind of.”
Rafiq had service gaps of 6 months before her daughter received another
internship job. Rafiq discovered that “The right fit between the participant and
community partner is essential. But it is a very time-consuming process.” Similar to
Bahar, Rafiq learned how important job preference and matching of job skills were for
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producing better employment success for her daughter with ASD and intellectual
disabilities.
Parent Advocate
All five parents described themselves as parent advocates. Rafiq described herself
as her daughter’s “champion” and her “defender.” She shared that nothing in her
daughter’s life would happen unless she “set the wheels in motion.” Rafiq did this by
regularly reading articles online and subscribing to newsletters. She also revealed that
when her daughter was little, she mostly read articles about treatment. In comparison, she
continued to read and researched articles, but the topic changed to adult services.
Gabby described herself as a person who tried to “do what I need to do for my
daughter to make it workable for her.” There was a transportation scenario where the
district’s transportation department staff expected Rafiq’s daughter with Down syndrome
to walk a mile and a half to the public bus stop. Gabby advocated for the safety of her
daughter and was approved for the door to door transportation from home to the
transition center.
Bahar described her experience after she moved into a rural community.
…[I] just moving to our small town, I came here, and nobody else had services,
nobody else knew about anything, and so we formed a parent group, and now they
all come to me still saying…What are we going to do about this? The district
won’t let us do this; what are we going to do? I’m a fighter.
Abby thought that parent involvement was beneficial to her daughter’s education:
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[you] have to stay on top of things and not pester, but just be involved so that they
(teachers) know you’re on board, and that you are interested so that they know
they’re being…one, appreciated, but also that we’re keeping an eye on things.
Even though these five participant parents seized the role of an advocate; other
parents had some self-doubt about taking on this position. A mother of a son with
Attention Deficit Disorder (ADD) said, “It’s hard to advocate a lot of times for your kids.
You can feel alone. You don’t want to ruffle feathers, but at the same time, you are the
only one who is going to do that” (Wecker, 2015, p. A1, A6). Four of the participants in
this study expressed word phrases of leadership: (a) “I’m a fighter,” (b) “set the wheels in
motion,” (c) “stay on top of things,” and (d) “make it workable for her.” However,
leadership skills did not happen automatically. All participants grew into their leadership
roles as their children transitioned from preschool to elementary, elementary to middle
school, middle school to high school, and high school to postsecondary education or
transition services.
Social Isolation
Four out of five parents expressed concern about social isolation. Rafiq’s daughter
became more self-conscious about how she socialized with peers her age. Her daughter
seemed to function better socially when she was younger. Although her daughter
improved upon her social skill levels, she became more aware of “how lacking she is”
and “just how much difference there is between her and most other people.” Also, due to
limited programs for young adults with disabilities who have aged-out of a transition
program, her daughter experienced episodes of social isolation which impacted her
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social-emotional health. As a result, her daughter became more reclusive and defensive
around other family members.
Acke and Abby shared that their daughter mostly met other people through her
jobs because “it is hard for her to have friends and to integrate.” When their daughter
made a “connection,” she made friendships although her friendships were not close ones.
Abby saw the importance of her daughter establishing any friendship.
Bahar thought that her daughter had improved her social and communication
skills from working with other people in the community. Gabby also shared how job
experience in the store at the high school had helped her daughter learn interaction skills
with other people. However, Gabby felt that her daughter did not reciprocate sustained
interactions with people. She was concerned that the lack of conversation skills would
make it harder for her daughter to obtain a job in the future. In contrast, Bahar lived in a
smaller community where her daughter knew most members of the town. The other
parent participants lived in the suburbs with less frequent social interactions. These
parent participants appeared to be more protective due to the risk of harm in the
population, possibly due to the size of their communities. Lastly, these parent participants
arranged for and searched for structured environments and social learning experiences
which did not always offer spontaneous social conversational opportunities on a daily
basis.
Monetary Concerns
All five participants were worried about other parents in the community who
might not have the funding, or a means to obtain resources in different counties. Gabby
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felt fortunate that she and her husband had jobs to support their daughter. From the time
of her daughter’s birth, she applied for and continued to wait for Social Security
Insurance (SSI). She and her husband assumed that they would always take care of their
daughter because they have the means to do it.
Acke and Abby were also a household with dual income. They both agreed that
having good insurance through their employer was “very fortunate.” In a Deseret News
article, a parent of a son with mental illness said, “A quarter of my income goes to
treating my child with mental illness” (Anderson, L., 2014, p. A3). Comparatively,
Acke’s and Abby’s daughter was offered a scholarship for her grades, and the department
of VR had provided some support for college. They do not consider themselves poor or
wealthy. When VR offered to provide some extra funding for postsecondary education,
they felt thankful for this monetary support.
Bahar had received support through SSI since her daughter was a year old. She
and her husband were students with not much money and did not have family around
always when she applied for SSI. Bahar knew of other people who did not apply for SSI.
These others felt that SSI was a form of welfare or that state tax dollars depleted with
SSI. Bahar had found every resource she could that helped to take care of her daughter.
Otherwise, her daughter would not have opportunities to learn about independent living
skills and social skills in different community environments.
Rafiq had a difficult time answering the question about monetary needs. She felt
that other parents had it much worse than she did. In Rafiq’s financial needs for her
daughter with disabilities, however, Rafiq did talk about receiving respite care for one
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year. When the respite care staff had visited the home a few times per week, Rafiq had a
couple of hours to herself. She said, “It was the best year of my life.”
The participants all had different scenarios for monetary support for their young
adult children with disabilities. These scenarios were: (a) dual income from parents on
waiting list for SSI assistance, (b) dual income parents without SSI assistance, (c) parents
who receive SSI assistance, and (d) a parent who does not receive SSI support but really
appreciated respite care in order to take a break, re-focus, and re-vitalize herself.
Planning for the Future
Bahar hadn’t pursued guardianship for her daughter because guardianship was
expensive, and her daughter listened to instructions and safety concerns. Some young
adults with disabilities can become be a safety risk to themselves and other family
members. This possible threat was not the case with Bahar’s daughter. Instead, Bahar
shared how her daughter with Down syndrome was intellectually high-functioning, loved
to be around other people, and was kind to her family and community members. Bahar
did not want guardianship for her daughter because guardianship would take away her
daughter’s independence. As a family, guardianship wasn’t a concern of theirs because
her daughter was thriving as an active member of the community. However, she
acknowledged that it would be a concern in the future.
Rafiq did not have guardianship for her daughter with ASD, and Rafiq admitted
that life does not go on forever. Therefore, Rafiq knew that guardianship plans needed
attention in the future. Acke and Abby hoped that they witnessed a daughter
demonstrating self-determination skills, but for now, they are slowly moving towards
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supporting a daughter with other health impairment in college. Gabby shared that she and
her husband will always be responsible for her daughter with Down syndrome who is
intellectually high-functioning. Gabby stated that she and her husband planned set-up
care for their daughter before they died because their son was too young for the
responsibility.
Other parents acknowledged that guardianship is a financial challenge; however,
they are willing to pay the courts for their adult children have a legal advocate. A few
statements from these parents describe their insights. From a mother of a son with an
intellectual disability, “Someone has to look out for J, so no one is taking advantage of
him” (Cortez, 2015a, p. A1, A8). And from a father of a son with Down syndrome, “It’s
always a dilemma when you have a guardianship position. You have to put in so much
protection, and it costs so much that people choose not to take it because they just can’t
afford it” (Cortez, 2015a, p. A1, A8).
Guardianship is a personal decision made by all parents with young adults with
disabilities. Teachers introduce the topic of guardianship at IEP ninth-grade meeting.
Every parent has a reason why or why not guardianship should be considered for their
young adult children with disabilities (Millar, 2014). Some parents interpret guardianship
as a protective act, and other parents view guardianship as means to limit their young
adult children with disabilities independence.
Evidence of Quality
I purposefully selected five participants who met participant criteria. I developed
interview questions to align with a literature review of the local problem and RQ1, RQ2,
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and RQ3. I member checked each transcription with each participant by sending a copy
of the transcription to all participants. I spent 15 minutes each discussing the wording of
the transcriptions with each person. During these member checking sessions, I verified
themes for social isolation, guardianship, parent advocacy, planning for the future,
teaching pedagogy and methodology, and outside agency support and work experiences
as well as any new developments related to transition services for their young adult
children.
Furthermore, I gained additional understanding from re-reads of narratives,
keywords, and subthemes. The themes that emerged from interview stories, and a priori
knowledge from literature review, the Deseret News, and government websites were
• specialized services and placement,
• teacher collaboration in the community,
• aging out or postsecondary options,
• dedicated caregivers,
• the burden of financial support and the potential for social isolation,
• employer expectations from employees with disabilities, and
• self-confidence gained from employment.
Interpretation of Findings
Specialized Services and Placement
The participants’ children were either on track to attend, had attended, or were in
preparation to graduate from transition services. Students who participated in a transition
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program were not eligible for a certificate of completion until they could age-out of the
program.
School programs. When I compared three of the participants’ perceptions with
two other participants’ views, I noticed how the teacher’s pedagogy and methodology
changed relative to how well each of their children performed in the general education
setting as well as in their cognitive and mental health abilities. At times, these young
adults with intellectual and other disabilities had experienced a variety of teaching
pedagogy which could or could not have prepared them for employment or work
experience outside of high school (Neubert & Moon, 2006; Phillips et al., 2009). A peer-
reviewed article by Papay, Unger, Williams-Diehm, and Mitchell (2015) proposed
developing self-determination and career awareness in the primary grades. Self-
determination skills are a lifelong process, and by incorporating this skill into the
elementary curriculum, the parents experience a better understanding of the transition
process over a longer period. At the middle school level, some participants perceived that
they received appropriate academic instruction. However, other participants observed that
the specialized instruction classrooms were adapted, but they were not modified to meet
the individual needs of their children. In a Carter et al. (2014) study the researchers
agreed that students with severe disabilities needed to receive education as heterogeneous
groups. Due to these students’ unique profile, the transition education benefited from
tailored, individualized plans.
After middle school, the children of Acke and Abby, Gabby, and Rafiq children
received general education and work experience for social communication concerns
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while attending high school. Whereas, Bahar’s daughter did not start job experiences
until she entered the transition program. All participants had young adult children who
had worked as volunteers or neighbor helpers or part-time employees while attending
high school. According to Lindstrom et al. (2011), young adults with disabilities needed
work experience to gain sophisticated skills like teamwork, responsibility, and ethics. In
the workplace young adults with intellectual disabilities who experienced high-preferred
and high-matched skills sometimes demonstrated higher productivity and task completion
(Hall, Morgan, & Salzberg, 2014). However, Papay and Bambara (2014) cautioned that
work experience effectiveness had mixed findings which may or may not associate with
family involvement and short periods of employment rather than long-term employment.
Equitability. Every program that participants’ daughters with disabilities
attended in the community was dependent on the continuation of funding from state and
federal legislators. Furthermore, the marginalization of young adults with intellectual and
other disabilities affects all demographic and geographic areas—locally, nationally, and
internationally—and creates a financial burden on families of young adults with
disabilities and their communities (At-Turki, 2012; Hasnain & Balcazar, 2009; Sanford et
al., 2011). A family’s income also impacted the quality of healthcare services and amount
of adjunct services or social insurance support (Fremstad, 2009; Parish, Rose, Grinstein-
Weiss, Richman, & Andrews., 2008). Another researcher also argued that being disabled
resulted “in poverty, a lack of healthcare, inaccessibility to a proper education, and
isolation” (Bone, 2017, p. 1307). Due to the unpredictable nature of funding and family
income, Bahar utilized resources in her community that helped to take care of her
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daughter. The other participants managed healthcare and the care of their daughters with
their private funding sources.
Unfortunately, parents received accommodations and modifications to their
children’s individualized educational plan, but specialized educational supports do not
amend the culture surrounding disability services. The parents in this study wanted equal
opportunity for their young adult children. At times, the location or type of school
negatively or positively impacted program development. For example, a charter school
where Acke’s and Abby’s daughter attended closed enrollment for high school to their
daughter due to funding and a limited number of certificated high school teachers. The
charter school experienced financial hardship. The high school where their daughter
transferred to collaborated, developed programs, and expanded resources to parents. Until
two years ago, Bahar’s daughter attended a rural high school where the transition
program was in the planning stages.
Equitable learning. I discovered that both the teacher and parent contributed to
the educational and workplace achievements. In the Deseret News article (Author
unknown, January 11, 2014), a parent explained how her son received hands-on
experience that he did not get at a traditional school, and he has flourished. Holwerda,
Brouwers, de Boer, Groothoff, and van der Klink (2015) as well as Wagner, Newman,
Cameto, Garza, and Levine (2005) indicated that teachers’ expectations of a student’s
ability to work in competitive employment were the only statistically significant
perspective. Therefore, a teacher or parent who was to underestimate the abilities of
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young adults with disabilities could have a future impact on their student’s success as
employable individuals in competitive employment.
An example of this scenario would be when Gabby’s daughter attended a
specialized classroom in a public school to address her cognitive needs. Gabby thought
her daughter’s middle school educational experience was not adequate because the
teacher concentrated on the various needs of her daughter’s peers as a group and not on
her daughter’s learning needs. Her daughter was marginalized for having a higher
cognition in the specialized classroom and for having a lower cognition compared to
general education peers. In high school, her daughter received academic instruction with
modifications to meet her learning needs and gained school store experience to improve
her social communication skills.
There continues to be inequitable employment support from VR with regards to
types and severity of the disability. Other researchers indicated that there was better
employment support for young adults with severe disabilities from VR than for young
adults with mental health who had significantly lower opportunities for employment
(Hart, Grigal, & Weir, 2010; Joshi et al., 2012; Test et al., 2009). Recent data from
Honeycutt, Thompkins, Bardos, & Stern (2015b) indicated that the percentage of
applicants who received VR services ranged from 31 to 82 percent nationally. In
comparison to the nation, Utah did not have the highest ratio of applicants nor did it have
the lowest ratio of applicants (Honeycutt et al., 2015b). Rafiq agreed that employment
support was better in the transition program than in VR. She reported how different
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agencies were working together to find jobs for young adults with disabilities, but these
programs did not run year-round and were always at risk for budget cuts.
Teaching methodology and equity. Many of the methods and practices in
pedagogy had changed in the school districts due to anticipated modifications in federal
and state funding practices. Teachers are always adjusting to state and district
interpretation of educational laws about educational transition services. Even though all
five participants were Caucasian, their experiences with transition services followed a
different plan for each of their young adult children. All five parents relied on other
parents, themselves, and educators to provide guidance in preparation for many
transitions from preschool through postsecondary or transition center services that
occurred in their young adult children’s educational and community living experiences.
Bone (2017) pointed out that the educational community needed to define disability as a
valid identity as opposed to a caregiver’s burden. Therefore, the community would
address services for people with disabilities better by changing their conversation about
diversity and action.
Despite adequate socioeconomic status, Acke, Abby, and Bahar experienced
abundant opportunities, but two other parents expressed feelings of unpreparedness.
Gabby and Rafiq perceived their children’s middle school experience as non-equitable
services for what their children needed at the time. Moreover, Rafiq was experiencing
gaps in program services since her daughter aged-out of a transition program. Under the
educational laws of the federal government, it required that parents received unbiased
information and that each student received an equal opportunity to advance. The Obama
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administration had mandated Every Student Succeeds Act (ESSA) which became
implemented into state-level educational institutions by 2017. Despite these laws and
acts, there continued to be non-equitable services for their children with disabilities. By
changing the conversation about disability services, diversity, and action, programs for
people with disabilities could transform into actual individualized equitable services.
Teacher Collaboration in the Community
Every parent had a different type of experience when they each began
collaborating with teachers. Canha et al. (2013) reported that parents of adult children
with intellectual and other disabilities perceived that teachers did not work with the
community enough to facilitate a successful transition from school to adult life. Gabby
observed that teachers at the middle school and few at the high school were not
collaborating with the community to facilitate successful transitions from high school.
Rafiq was frustrated with the service gaps for employment once her daughter aged-out of
a transition program. In comparison, Acke, Abby, and Bahar were grateful for the
services they received in high school, transition programs, postsecondary support from
VR counselors, and disabilities service counseling from a local college.
Aging out or Postsecondary Options
All five participants were experiencing different stages of transition: (a) high-
school to college, (b) high-school to transition center, (c) transition center to aging out,
and (d) aging out to community living. All five parents had to advocate for service
options for their children with intellectual and other disabilities.
Parents as protectors and advocates. All five parent participants described
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themselves as advocates for employment, postsecondary education, and work experiences
in the community. When the parents’ young adult children were actively participating in
public high school and transition programs, the parents described their experiences as
collaborative with teachers and administrative staff. All of the parents, except for Gabby,
experienced a collaborative outcome when their young adult children transitioned from
high school to a postsecondary or a transition program.
Gabby stated how the high school teacher gave her a pamphlet about VR without
explanation about their services and other agency services. Gabby also shared how the
high school teacher had not arranged for the door to door transportation for her daughter
with intellectual disabilities. Gabby advocated for the door to door transportation for her
daughter from home to the transition center and back, instead of the high school teacher.
West and Pirtle (2014) held a focus group where they explored mothers’ and fathers’
perspectives on special educators and the attributes that influenced effective inclusive
practices. Similar to Gabby’s scenario, these parents requested that teachers demonstrate
advocacy skills, good listening associated with interview skills, and promotion of
schoolwide programs for acceptance of differences.
Equally important, West and Pirtle noted that only the mothers identified critical
transition periods support from teachers—into transition programs or aging out of
transition programs or graduating from high school and then attending college. In
contrast to research findings from West & Pirtle, Acke expressed awareness and past
participation in the transition from middle to high school for his daughter. Acke’s
awareness correlated to his experiences as a teacher and a counselor.
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Compared to the other participants, Rafiq described herself to be a protector and
interpreter for her daughter. When her daughter was not working, she became
increasingly dependent on Rafiq. Surprisingly, Rafiq felt as though she was the only one
in the family who could take care of her daughter although she has a few family members
available to help her. Rafiq shared how other family members expect her daughter to
grow out of ASD. She found herself defending and educating family members about her
daughter’s behavior. Hence, she does not get time to herself to relieve the stress of being
a caregiver.
The Burden of Financial Support and the Potential for Social Isolation
Four of the participants expressed more concern over the potential for social
isolation than the burden of financial support. One participant was grateful for funding
from the state.
Primary support and guardianship. All participants were accustomed to being
the central support for their young adult children with disabilities. They reported that they
had enough funds to provide caregiving and other additional costs for their young adult
children. Additionally, Bahar was concerned about her daughter losing her independence,
if she were to apply for guardianship. Each parent acknowledged the importance of
guardianship and making plans should they die suddenly (Cortez, October 24, 2015b).
And, all participants had thought about making plans. Each parent in this study was an
active advocate for their young adult child with disabilities and had mentioned a partial
type of plan for future support. The Millar (2013) study findings are similar to
participants. With parental perspectives in mind, guardianship is a legal process where
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the courts appoint someone to have power over another individual. Instead of focusing on
guardianship, Millar stated that both schools and parents needed to promote self-
determination skills and alternative community support that protected the civil rights of a
young adult with a disability. Millar emphasized that guardianship takes away autonomy,
and families should exercise caution as the last resort. Hence, these partial types of plans
for their adult children with intellectual or other disabilities need to review the least
restrictive supports before considering any guardian appointment.
Communication and social competency. Four of the participants expressed how
their young adult children with intellectual disability, other health impaired, and ASD had
lacked self-determination and communication skills which appeared to negatively impact
their relationships with other family members, colleagues, and peers. Acke’s and Abby’s
daughter needed to be encouraged to initiate friendships through workplace
acquaintances. A reason for their daughter’s communication challenges could be that
language, and social deficits which occurred at a young age then carried over to
adolescence (Whitlow &Watts, 2014). Gabby’s daughter continued to demonstrate
limited conversation skills which impacted her ability to work with other workers and ask
questions about procedures. Whitlow and Watts (2014) stated that “social competency is
highly dependent on language skills” (p. 32). Lastly, Rafiq’s daughter did not have
enough work due to 6-month program gaps. As a result, her daughter became more
dependent on Rafiq and less confident in social settings.
Even though, Rafiq’s daughter had improved her social communication skills and
became more aware of how she compared to her same age peers without a disability. In
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contrast to the other participants, her daughter had much more difficult time adjusting to
social scenarios in the community. A potential reason for Rafiq daughter’s social factors
were explained by a Taylor, Smith, and Mailick (2014) longitudinal study which
examined outcomes for adults with ASD and focused on the timing of the relations
between behavioral change and vocational activities. The participants in the study were
adults with ASD, ranging in age from 19.0 to 53.3 years and parents of some adults with
ASD. Stats showed that approximately 64.1 of adults with ASD had a diagnosis of a
comorbid psychiatric disorder. Besides communication and social skill factors, Taylor et
al. (2014) claimed that the relations between vocational activities and behavioral
development for adults with ASD tended to be the same as adults without disabilities,
including the potential depression due to underemployment status. This study also
indicated that adults with ASD who worked in vocational placements where there was a
greater degree of independence had reductions in ASD symptoms and maladaptive
behaviors. Wehman et al. (2014) also indicated in a study that there needed to be more
research on how the social and psychological factors of ASD impact young adults as they
transition out of school. At this time, there are no practical applications for behavioral
support implementation for young adults with ASD in the community and work settings
(Landmark et al., 2010). Without communication, social skills, and opportunities for
independence, individuals with ASD are less successful at forming relationships in the
family and workplace.
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Dedicated Caregivers
The parents expressed how they would always be the primary provider of care for
their children and how they would forever stand by them, even if other family members
and teachers did not understand their child’s disability. All parents appeared to want more
information about how to be more assertive when planning for their children’s
educational future and vocational experiences (Milshtein, Yirmiya, Oppenheim, Koren-
Karie, & Levi, 2010). The parents also wanted to know how to present their cases to
decision makers in the schools, outside agencies, businesses, and legislators. A
conclusion emerged that no parents be allowed to carry their burden alone; instead,
people in the community need to bear the burden together.
For parents not to carry their burden alone, school districts could promote
partnerships with parents. A study by Pleet-Odle et al. (2016) suggested that school
districts needed to raise expectations for postsecondary success by developing a
partnership with the parents of children with intellectual or other disabilities. Teachers
could empower parents by
• letting parents know about adult service providers in the first year of high
school,
• connecting parents to role models such as successful adults with disabilities,
• interacting respectfully with families with varying backgrounds,
• planning early for the transition by teaching elementary school students about
self-advocacy,
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• partnering with parents to identify everyday activities that develop
employability and life skills as well as natural supporting help from other
family members,
• enabling parents to trust their instincts and consider receiving special
education service until they graduate or age out, and
• having families with their children participate in school or community-based
activities that foster teamwork and leadership.
Guardianship. None of the parents in this study had pursued legal trust
protection for their children with disabilities and guardianship due to time constraints and
expense. Furthermore, none of the parents mentioned any concern about how the state
could or could not take care of their young adult child with a disability should they suffer
an unexpected death or a significant injury. A Millar (2014) study supported taking these
kinds of legal actions by parent participants. Millar believed that school district IEP
teams put too much emphasis on guardianship. Sometimes, the school districts IEP
created undue stress and financial expenses for the parents of adults with disabilities. I
found that every day-to-day care for their children with disabilities took precedence over
the parents’ planning for their children’s future, and all parents accepted their
responsibility as the forever caregiver with no expectations placed on other family
members. Millar’s research results reinforced these precedencies. Furthermore, none of
the parents thought guardianship was necessary because their children were not harmful
to self or others and followed house rules. Even if the above case were true, Millar (2013)
suggested alternative support systems for the family before guardianship. Some of these
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supports might be respite care, analysis of medications, and partial guardianship until
behaviors subside. When these parents retire, they could experience a lifestyle which
could or could not change their perspective about asking for more family support, setting
up a trust, and applying for guardianship.
Risks of social isolation. The parent participants talked about driving their young
adults to programs and about initiating work as well as social opportunities for their
young adult children with disabilities. Without the parents’ money for transportation and
their time to drive the children to those locations, their children would not have had these
opportunities. Even though all five parents dedicated countless planning hours and pay
for their young adult children with disabilities, there continued to be at risk social
isolation due to communication, cognitive planning deficits, limited self-determination
skills, and gaps between services or employment (Bell & Clegg, 2012).
Social Inclusion. Although people with disabilities have friendships, their level of
social inclusion changed if they had no access to the community. Furthermore, service
providers seldom sustained social inclusion in system-wide organizations due to small-
scale of their interventions and confusion amongst stakeholders about the meaning and
content of social inclusion (Amado, Stancliffe, McCarron, & McCallion, 2013;
Simplican, Leader, Kosciulek, & Leahy, 2015). Amado et al. (2013) concluded that social
inclusion was successful when people with disabilities participated in varying
environments that involved opportunities for significant interactions. Simplican et al.
(2015) and Luckasson and Schalock (2013) endorsed ecological factors of individual,
environmental, and social factors to define social inclusion for individuals with
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developmental disabilities. These researchers suggested that there were several ecological
factors to consider when considering the social inclusion of individuals with
developmental and other disabilities.
Individual. Social inclusion increases happiness, but a sense of belonging and
social inclusion may or may not increase loneliness.
Interpersonal. Family members, friends, and group home staff results in positive
or negative relationships due to feelings of respect and trust or discrimination in
workplace settings or abuse from family members, intimate friends, or service providers.
Organization. These conditions exist with group cultures such as the family,
churches, schools, places of employment, and law enforcement. Some organizations are
ambivalent and sabotage enabling conditions at the individual and interpersonal level.
However, positive organizational establishments improve the effectiveness of individual
and interpersonal conditions.
Community. These conditions are types of living accommodations, availability
and access to appropriate services and transportation, community attitudes, culture, and
geography. Amado et al. (2013) cautioned that there is limited research on public
attitudes.
Socio-political. There is limited research that examines how political levels
impact social inclusion. In their study Hermsen, Embregts, Hendricks, and Frielink
(2014) concluded that funding cuts had negative influences on organizational cultures
and staff behavior.
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The results of their study and other research studies indicated that the risk of
social isolation occurred due to communication, cognitive planning deficits, limited self-
determination skills, and gaps between services or employment as well as social inclusion
factors. All researchers agreed that there needed to be more research in the area of social
isolation and social inclusion.
Expectations of parents. Each parent participant talked about the young adult
child’s level of independence and how they were facilitating activities at home and
community to work on those skills. Blacher et al. (2010) reported how the parents of
young adults with ASD expected their son or daughter to live in the community with
greater frequency than was expected by the parents of young adults with Down
syndrome, cerebral palsy, or moderate /severe intellectual disability. I did not gather the
same data as Blacher et al. (2010). In my findings, the two participants with young adult
children with Down syndrome wanted them to be as independent as possible. Rafiq has a
daughter with ASD and intellectual disability. She did not discuss any expectation of
having her daughter live independently. Acke and Abby were expecting that their
daughter with other health impairment try-out college but it was not an expectation to
finish college then move out of their home. In comparison, Wehman et al. (2014) focused
on predictors of successful transition from school to employment for youth with
disabilities. These researchers added that young adult children with higher parental
expectations of self-support and of acquiring a job had better competitive employment
outcomes. I did not get a clear impression of participant parents’ perspective about future
expectations for their young adult children with disabilities.
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Employer Expectations from Employees with Disabilities
Researchers and parent participants identified the job skills of employees with and
without disabilities. Specifically, Ju et al. (2012) surveyed 168 employers to assist with
the identification of five top job skills of employees with disabilities and without
disabilities. The five top job skills were the ability to (a) demonstrate personal integrity
and honesty, (b) follow instructions, (c) show respect for others, (d) be on-time, and (e)
show high regard for safety procedures of employees with disabilities. These top five job
skills were the same for employees without disabilities except that being able to read with
understanding was rated higher than showing regard for safety procedures. According to
the parents in this study, job training skills at transition programs focused on how to do
these ten tasks to
• interact with different people,
• make eye contact with the customer,
• ask other people questions before others ask them questions,
• monitor the credit and debit operation of the store and count back change,
• build self-confidence and self-satisfaction as well as showing respect,
• work cooperatively with co-workers,
• show up on time for work,
• keep track of hours,
• make a task list and check each task off the list, and
• get to work by bus.
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Compared to Ju et al. (2012), these parents’ perception of a transition program
and job training skills emphasized interpersonal and individual social interaction skills
with other employees, money management of pay, and community knowledge about bus
service to and from work. Whereas the Ju et al. (2012) study showed how employers
expected their employees to have personal character skills of integrity, honesty,
respectfulness, punctuality, and alertness for safety within the workplace as well as
attention to instructions. Therefore, employers were not as concerned about social
inclusion in the workplace as were the parents of children with intellectual or other
disabilities.
Self-Confidence Gained from Employment
For the participants in this study, the amount of confidence gained from
employment depended upon the individual needs of their children with disabilities. Rafiq
noticed less confidence with social encounters at work or in the community when placed
in the different working environment after her daughter with ASD aged-out of a
transition program. Some people with disabilities were not transitioned into the
workplace because they lacked self-awareness of their limitations and misunderstood
some parts of the job selection process (Kulkarni & Lengnick-Hall, 2014). According to
Wehman et al. (2014), there are numerous empirical articles on explored interventions for
problem behaviors of children and adolescent age with ASD, but there was limited
research on transition-age adults with ASD.
Comparatively, Lindstrom et al. (2011) indicated that transition services lead to
increased confidence, to clearer planning for post-graduation education, and to additional
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work opportunities for young adults with disabilities. Other researchers also suggested
that stable behavior, self-management, and reduced rates of problem behavior are
significant for securing employment (Landmark et al., 2010; Test, Mazzotti, et al., 2009;
Wehman et al., 2014). Therefore, the amount of confidence gained from employment
depended on different disability and transition service factors as well as comprehension
of self and the job selection process.
Additional Factors Related to Interviews: Communication, Social Capital, and
Tools
Researchers who collected data from systems and individual outcomes for persons
with an intellectual and developmental disability experienced many obstacles for
effective dissemination of national project and state findings. Gabby also expressed
concern about the amount of information for parents because there was no liaison to
assist parents with aging out opportunities or with community job opportunities for their
children with intellectual and other disabilities. Similarly, Ticha, Hewitt, Nord, & Larson
(2013) agreed that some of these obstacles were presentations with content that was
understandable to parents, practitioners, scholars, and policymakers to have better
accessibility to publications. Moreover, other parents commented that some teachers
unintentionally marginalized their students with intellectual and other disabilities.
Some special education and related service professionals marginalized parents by
“showering them with information” without listening to the parents’ immediate needs
(West & Pirtle, 2014). Curry, Jean-Marie, and Adams (2016) also pointed out how social
networking and parent motivational beliefs in urban school districts showed parents how
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their involvement did influence their children’s education. They found that over time
parents could establish partnerships with other parents and informal connections with
teachers. Nevertheless, some school districts allowed parent involvement but
implemented behavior plans and modifications to the student’s education plan which
deflated the parent’s ability to be an active partner in the educational process (Curry et
al., 2016). As a consequence, when parents of children with disabilities afforded the
opportunity to become an involved partner in the educational process, these parents
developed self-efficiency.
Another parent shared how her daughter did not like some of the custodial jobs at
the transition center, but these work experiences taught her to complete a task much
better. However, Hall et al., (2014) asserted that workplace experience, counselors, and
teachers needed to consider assessment tools for job preference and job-matching to
provide better job experience. Hall (2017) also reported that employment for people with
disabilities needed to be a compatible match between the person’s skills and preferences
and job requirements. Morgan and Openshaw (2011) emphasized how the IDEA
reviewed the importance of discussing the student’s preferences, strengths, and interest
(Section 602, 34[b]). Their research used two different assessment tools, job-preference,
and job-matching. Each tool was compatible with low-level readers. With these
assessment tools, teachers, job seekers, and transition teams can reasonably identify a
job-preference which is matched up with the job-seekers level of skill (Hall et al., 2014;
Morgan & Openshaw, 2011). Moreover, the individuals with disabilities who participated
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in competitive employment had better rural community involvement in job-preference,
job-matching, and networking.
Researchers discovered how social capital contributed to better rural community
involvement than other larger communities. The Beaudoin and Thorson (2004) and
Morgan and Openshaw (2011) studies equated more rural community involvement with
social capital because the rural community was neighborly and had an awareness of
others as compared to larger communities. Wehman et al. (2015) indicated that high
school transition programs, postsecondary education attendance, and vocational services
did not predict competitive employment for young adults with disabilities. However,
there could be a connection between social capital and successful competitive
employment in rural areas.
Summary of Themes
These parent participants provided many different insights into how their young
adult children with intellectual and other disabilities were accessing education, daily
living tasks, community involvement, and job experiences. The parents expressed
concern about (a) equitable learning environments, (b) the continued need to advocate for
their young adult children, (c) the gaps in communication between middle school and
high school personnel, and (d) outside agency supports when their young adult children
transitioned from specialized or inclusion learning environments and from transition
programs into community living. Furthermore, when these young adults with disabilities
were not working or participating school or programs, they experienced social isolation
which increased the burden of care on the parents. In fact, the parents were so busy
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managing and advocating for their young adult children’s life that planning for
unexpected events was not a priority. Therefore, parent participants appeared to advocate
for their young adult children with disabilities to reduce the risk of social isolation and
reduction of underemployment. Although parents were thankful for some form of social,
educational, and workplace support for their children, they perceived the overall social,
educational, and workplace collaboration efforts between school, state, federal, and other
community agencies personnel as a labyrinth (see Figure 1). Thus, parents seek changes
in thinking to facilitate independent living for young adult children with disabilities.
All five participants initiated and collaborated educational services for their young
adult children with intellectual and other disabilities. They discussed transition planning
goals between community business partners as well as VR staff, teachers at the high
school, and disability services at the university. Some of the participants experienced
gaps in service when their young adult children were not employed or were not receiving
educational services. All five participants were up to date on the latest research about
transition success from adolescence to adulthood. Each parent had a different perspective
on transition services and teacher knowledge about methodology and pedagogy that
related specifically to their children's learning needs. The parents planned for their
children’s future more than for their destiny. However, the most critical outcome of the
interviews with four participants was the concern for increased social isolation as a result
of unemployment and structured program lapses.
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Figure 1. The coordinated efforts by personnel at schools and state, federal, and
community agencies to facilitate employment for individuals with disabilities. Many
parents in the study found it difficult to navigate the resources offered by these entities.
Limitations and Discrepant Cases of the Findings
There were no discrepant cases in the findings; all parents reported the same
themes that were specific to the transition stage for their young adult children with
intellectual and other disabilities. However, there were limitations of the findings due to:
1. The small number of participates because this figure only represented a tiny
fraction of the community.
2. The type of disability of their children because this study only represented a
couple of Down syndrome, one ASD, and one other health impaired
classification.
3. The demographic data because the data represented Caucasian parents only.
Specialized
Services
Collaboration
Options Caregivers
Social Isolation
Financial Support
Employer
Expectations
Self Confidence
Employment
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Factors Related to Competitive Employment of Individuals with Disabilities
In preparation for a position paper, I investigated options for reduction of social
isolation and improvement of employment of individuals with disabilities after aging out
of a transition program. I noted that young adults with disabilities sustained social
interaction and community involvement by participating in the workplace and school
employment programs. Furthermore, youth with disabilities employed by business were
paid minimum wage. In comparison, young adults with disabilities who participated in
sheltered workshops were unpaid or received a lower than minimum wage.
Sheltered Workshop Versus Competitive Work
Recent research indicated that sheltered work services are not self-sustaining. The
National Disability Rights Network, (NDRN) (2012) reported that sheltered workshops
get most of their money from government agencies. Sheltered workshops allocated funds
as follows: (a) 46% from state and county agencies, (b) 35% from production contracts,
(c) 9% of retail sales, (d) 2% from donations, (e) 1% from investment income, and (f) 7%
from other sources (United. States General Accounting Office, 2001). The NDRN (2012)
acknowledged that the workshop executives did not have the marketing skills, or business
plans experience to run a workshop efficiently because the workshops did not earn
enough through their contracts. In contrast, the non-profit and competitive workplaces
obtained contract work. Thus, the sheltered workshops were driven to produce motivating
workflow, and competition replaced the income generated by federal and state service
systems. In contrast, data supported competitive employment more than sheltered
workshop employment because the sheltered workshops appeared to disregard the
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individual’s disability, whereas people in competitive workplaces provided more
individualized accommodations to employees with disabilities (Hoffman, 2013).
Competitive Work for Young Adults with Disabilities
To address the need for more competitive workplace opportunities for persons
with disabilities, I wrote a position paper on why businesses should consider hiring
persons with disabilities. I developed this position paper to encourage talking points for
business partnership3 to help alleviate any misconceptions about hiring an employee with
a disability. By talking about these misunderstandings, some employers could change
their ideas about the cost of providing modifications and accommodations and how to
manage a more diversified company (Hartnett, Stuart, Thurman, Loy, & Batiste, 2011).
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Section 3: The Project
To address the needs of adults with disabilities, I discussed in Section 2. I
developed a position paper with suggestions for why business leaders should hire young
adults with disabilities. I supported this position paper with foundational insights based
on these learning theories: (a) transformational learning, (b) colearning, and (c) coaching.
The position paper I created included discussion of historical changes in U.S. law related
to disability and the impact of these statutes (see Appendix A). I also addressed some
myths about employing adults with disabilities and focused on workplace dignity and
diversity and why business employers should employ young adults with intellectual and
other disabilities. After reading the position paper, community business leaders and
organizations may learn specific reasons why hiring young people with disabilities may
benefit businesses. In the position paper, I provided reasons for hiring individuals with
disabilities in competitive workplaces and resources for business leaders in the rural and
urban area of the study site who are interested in employing individuals with disabilities.
Rationale
I developed the position paper to introduce the option of hiring young adults with
intellectual and other disabilities at a business within a rural or urban community. This
document could be an adaptable template to meet the needs of rural and urban businesses.
This position paper provided answers to why some businesses are employing and
investigating a more diverse workforce of young adults with intellectual and other
disabilities. Without community and business partner involvement, a population of young
adults with disabilities can become more homebound (Bell & Clegg, 2012). As a result,
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these adults with disabilities experience fewer opportunities for community socialization
and demonstrate regression from previously learned work skills (Whitt, Cawley, Yonker,
Polage, 2014). By discussing the ideas and suggestions included in this position paper,
community business members may take action as they become more aware of the
isolation and regression risks for young adults with disabilities. In summary, this position
paper could be a catalyst to activate community involvement and business partnerships in
ways that could reduce social isolation of both parents and their young adult children
with intellectual and other disabilities. By creating this position paper, I hoped to engage
the community and business leaders in a discussion about hiring young adults with
disabilities and how to effectively integrate these individuals into to the community and a
variety of workplace settings.
Review of Literature
I used educational data and book sources from a local university library and
online publisher sites (Sage, Carfax, Routledge, Wiley Online Library, Wiley-Blackwell
Publishing, and Dalhousie University) for this literature review. I found additional
references because these online publisher sites further extended the literature search.
The resource personnel at a local university library assisted with an extensive literature
search for adult learning theorists, Knowles and Mezirow. The Knowles and Mezirow
models pertained to areas such as social transformation, andragogy, and stages of
transformation. I also used EBSCO and social work databases, which I accessed using
Walden University and Utah State University resources. These databases included
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Academic Search Complete, ProQuest Central New Platform, Sage Premier, and
Springer.
I linked some of the project and learning theory articles I found to data
management site, Mendeley Desktop. I used Boolean searches which consisted of
phrases with connecting words of “and” and “or” included in them. I focused my search
on years between 2012 and 2017. However, I broadened the literature search to between
1986 to 2011 when I found 2012 to 2017 required additional primary verification and
historical support. The keywords I used were community outreach, andragogy,
transformative learning, social services, colearning, coaching, higher education,
transition services, competitive employment, labor participation, specific disabilities,
and accommodation issues. I cited 38 of the articles I found in the literature review in
this section.
Conceptual Framework
The parent participants were active advocates for their children but continued to
report gaps in service between middle school and high school and transition services after
their children aged out of a transition program. They wanted to learn how to work with
business partners and with state and federal agencies to address program gaps and the risk
of social isolation of their children with intellectual and other disabilities. When
developing the project, I researched three areas of learning theory: (a) transformational
learning, (b) colearning, and (c) coaching. I used these theories as a conceptual
framework because staff in a business organization who hire a young adult with
disabilities need to have the following management skills: (a) personal reflection, (b)
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leadership skills, and (c) positive collaboration (Cox, 2015; Rutherford, Walsh, & Rock,
2011). These business skills are essential because business partnerships could fall apart
without much planning and use of these skills. Sometimes the business partnerships are
often unsuccessful due to conditions that are outside of the business team’s control
(Aguilar, 2016). According to Vogel (2016), “communities are led by growth” (p. 103).
No matter how smart the members of the business team are, there needs to be person or
persons in the group who knows how to access knowledge from others in the community,
whether it be from the plant floor or the office.
A Community Example of the Conceptual Framework
A family car wash in Florida is an example of how a business provided jobs for
employees with ASD when given university resources and financial guidance from other
business persons in the local community. Staff at the university provided consultation on
how to set up the car wash so the employees would have a system to follow (D’Eri &
D’Eri, 2014). Another car wash business owner lent his car wash to run the family car
wash as a pilot project (D’Eri & D’Eri, 2014). The employees with ASD that participated
in the project demonstrated a higher level of performance and developed better social-
communication skills while being employed (D’Eri & D’Eri, 2014). Therefore, adults
with disabilities and their employers learned how to transform a job experience.
Foundations of Adult Learning and Transformational Learning
An employer of a business that is committed to hiring young adults with
disabilities needs to provide alternative ways to teach, manage, and retain employees with
or without disabilities. Chen (2014) noted, that “learning is transformative and leads to
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personal development” (p. 407). To Chen, adults transformed and further developed
intrinsically from learning experiences. Some of Chen’s investigation applied to
businesses. For example, the business members could have certain beliefs that could be
challenged internally through discussions with other members of the group. Furthermore,
in his transformative learning theory, Mezirow (2009) provided a pathway to change
because the learner has a transformative experience from a problematic event or thought.
From this transformative experience, the employer learning gains are more “inclusive,
differentiated, permeable, and has an integrated perspective” (Mezirow, 2009, p. 22).
Mezirow (1998) also cautioned that his transformational theory was not meant to be
sequential. Instead, adults experienced different phases in their life which caused them to
reflect and gain a deeper understanding of their practices.
Transformational theory (Mezirow, 2009) is applicable when employers hire a
diverse population of employees. The employer would have diversity training, and the
employees with and without disabilities would be assigned the opportunity to reflect on
this new information. Moreover, the human resource department of businesses could
have internal supports available to their employees as they moved through these
reflective transitions. Daloz (1999) wrote a reflection on adult student mentorship which
one can apply to employers who change their business model:
Over the years, I have come to believe that the line between learning and healing
is finer than we think … Within the obvious limits, perhaps a deeper
understanding of the dynamics of healing would inform our knowledge of
learning (p. 241).
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When business leaders adopt a social responsibility such as hiring more employees with
disabilities, they may foster less social isolation and more independence for these
employees.
Social Transformation
Social transformation occurs when a non-profit or for-profit organization provides
community services to the disadvantaged people of society. The volunteers learn to
observe without judgment. Rutherford et al. (2011) designed a community outreach that
needed an interdisciplinary lens where service providers and community involvement
was necessary. With this model, these researchers introduced the concept of social
justice, colearning, and action research. I applied the principles of colearning and the
three phases of transformation in the position paper. Even though this article does not
directly affect to adult business learning, it does provide information on why an
organization can transform into a social enterprise and maintain this entity within the
corporate place to continue the colearning process.
Colearning
Colearning was a grassroots idea. Research and implementation of a colearning
environment with university faculty, students, agency staff, and clients designed by
Rutherford et al. (2011). In a business climate, colearning would occur between
management and employee. Colearning environments also took place within
communities and equalized power relationships (Curry & Cunningham, 2000). The three
stages of transformation provided the framework for how colearning occurs. The three
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stages of transformation were (a) micro—self-internalization, (b) meso—service
integration, and (c) macro—society-externalization (Rutherford et al., 2011).
Micro-self-internalization. This stage of transformation occurs internally with
individuals such as managers and employees. This phase of critical consciousness can
help managers achieve a reflection of a person’s belief systems, both personally and
professionally. These people do not share private thoughts with others.
Meso-service-integration. This stage of transformation helps to inform the
person’s reflections. At this level, the manager and employees with or without disabilities
examine the workplace practice to find out the effects of social and accommodation
factors on the productivity of all employees. Once the employee without disabilities
establishes a rapport with the employee with disabilities, who could or could not need
assistance, the employer inquiries about how satisfied they are with the job. The
employees with disabilities are equal partners, so the employee without disabilities and
the business waits for natural opportunities, not staged opportunities.
Macro-society externalization. This stage occurs when the company and
employees with or without disabilities have equitable communities at their place of work.
The participants of equitable communities have significant control of the decision-
making process to achieve justice, freedom, and ecological balance. The employer of the
business does not shy away from power instead all employees work as equals within the
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business organization (see Figure 2).
Figure 2. Three stages of transformation during colearning (Rutherford et al., 2011).
Mutual Respect
It is essential that all individuals involved in any business understand that mutual
respect is earned and occurs over time. There also should be a shared vision for
collaborative learning as companies hire more employees with disabilities. Furthermore,
relationships needed to be build up over time to achieve trust between the employer,
employees with or without disabilities, and outside agency supports. Eventually, it will be
necessary for all stakeholders to learn how to address issues of safety and security along
with developing similar and non-judgmental relationships. Accordingly, there needed to
be a shared focus on ‘working with’ instead of ‘doing for’ (Rutherford et al., 2011). The
individuals involved in a business transformation should be willing to take risks and push
the boundaries of bureaucratic and traditional practices. Business organizations that
participate in social transformation projects demonstrate a sense of innate worth and
dignity of all people.
Meso Macro
Service Integration
Self
Reflect
Beliefs
Society
Externalization
Micro
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Coaching
Businesses can use similar adult learning theories to facilitate change in an
organization. Cox (2015) introduced how Knowles’ theory of andragogy and Mesirow’s
transformative learning theory can be used to coach adults. Members of the International
Coaching Federation (2002) stated that coaching “helps people produce extraordinary
results in their lives, careers, businesses, or organizations. Through the process of
coaching, clients deepen their learning, to improve their performance, and enhance their
quality of life” (p. 1).
Andragogy versus transformative learning. Knowles’ theory of adult learning
established learning on intrinsic motivation instead of self-reflection as a result of a
conflict. Cox (2015) defined coaching as a process that “integrates experiences, concepts,
and observations to facilitate understanding, provide direction, and support action and
integration” (p. 30). Nevertheless, adult learners who received coaching were not always
self-directed by intrinsic motivators as Knowles suggested.
Researchers in the field of coaching utilized Mezirow’s theory of transformative
learning to address the adult learner’s lack of self-direction by intrinsic motivators. Cox
(2015) proposed that Mezirow’s theory of transformative learning was also relevant to
coaching because it created changes in the learner’s assumptions about themselves.
Mezirow (1990, 1997, 2000) suggested that people tended to reject ideas that were not
within their frame of reference. For example, an adult who experienced an event that
contradicted his or her expectations, frustrations, intentions or challenges about values
and beliefs could question his or her effectiveness. Then the adult could have
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inconsistencies and conflicts created as an opening for learning known as “disorienting
dilemmas” (Mezirow, 1990). After experiencing disorienting dilemmas, employees could
experience several phases of transformation. These disorienting dilemmas should then
initiate coaching from another employee or outside sources.
Guidelines. After the employers read the position paper about why a business
should hire young adults with disabilities, they could want more instructions from
different coaching sources—a university, VR agencies, and other support personnel such
as occupational, physical, communication, or vision therapist. These guidelines for
various sources would be similar to what an employee with or without disabilities could
need some guidance from the same above sources. The coach guides the employer and
employees through disorienting dilemmas by
• helping the individual think through their difficulties by encouraging critical
reflection to help identify frames of reference,
• using stories or ask for examples from the individual that illustrate that the
current predicament is not remarkable and there is no need to feel isolated,
• helping the individual analyze a variety of interpretations and alternative
scenarios, the potential roles, and relationships,
• assisting the individual in formulating plans to deal with new realities;
especially when trying out new responsibilities and building new
relationships, and
• providing examples of models for functioning within the perspective or offer
opportunities to role play (Cox, 2015).
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Summary of Transformative Learning, Colearning, and Coaching
Colearning environments are needed to achieve social transformation within a
business organization, where the employer and employees with or without disabilities
share an equal partnership in the company. Therefore, all employees should exhibit
mutual respect. The employer and employees could develop mutual respect and grow in
their colearning experiences by going through micro, meso, and macro stages of
transformation. Sometimes the employer could designate a coach for those employees
who needed additional support to address skill building. The employer could also use the
transformative learning and coaching models where nonjudgmental listening and open
questioning would build on the employee’s learning experience.
Literature Review of Competitive Employment Gains and Positive Outcomes for
Young Adults with Disabilities
Changing Educational Trends
Researchers suggested that preparation for transition into the community needed
to start at the elementary level of education for all students with disabilities. To fulfill this
goal, teachers at the elementary level engaged their students and parents in transition-
focused activities. These activities included developing self-determination, career
awareness, and increasing parents knowledge about the transition planning process at
each school level—elementary-middle school, middle school-high school (Novak, 2015;
Papay et al., 2015). These researchers proposed the following self-determination
activity—the Self-Determination game for elementary classrooms. The teacher guided
the game by asking a series of questions that aligned with self-determination. The
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questions centered around hypothetical scenarios and “what ifs,” and students answered
the questions from their perspective. These researchers also suggested elementary
activities to develop career development. These activities were (a) career day, (b) career
interview with guest speakers, (c) classroom roles such as attendance and cleaning tables,
and (d) student designed career trading cards with career descriptions in the community.
When elementary teachers collaborated with parents and introduced information on the
transition process, families were better prepared to be effective members of the transition
planning team.
The teachers’ and parents’ expectations for living independently and working for
competitive employment also impacted future transition planning for the young adult
with intellectual disabilities and other disabilities. Holwerda, Brouwers, de Boer,
Groothoff, and van der Klink (2015) investigated the expectations of teachers and parents
for young adults with intellectual and developmental disabilities to obtain competitive
employment. Holwerda et al. (2015) observed that teacher and parent expectations
predicted employment options for the young adults with intellectual and developmental
disabilities. If parents had a high expectation for their young adult children with
disabilities to work in the community, these young adults were usually working in the
community within a time span of two years. Teachers are encouraged to share any
vocational knowledge with the parents of the young adult with disabilities.
As students with disabilities enter middle school and high school, the researcher
developed other practices to improve employment or postsecondary success following
high school. Simonsen, Fabian, and Luecking (2015) and Schall et al. (2015) suggested
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four other factors which increased employment for young adults with disabilities: (a) high
social and classroom behavior scores, (b) attendance at IEP meetings, (c) self-advocacy
skills, and (d) career awareness training and computer skills. Seong et al. (2015)
conducted a study where student participants learned the attitudes and skills necessary to
lead their own IEP. These students’ who self-directed their IEP gained self-determination
skills over time. Other researchers investigated the process of collaborative assessment
and a discovery process between special education and adult service providers
(Stevenson & Fowler, 2016).
Collaborative assessment for employment planning. Some researchers asserted
that transition assessments needed to be a person-centered process. Stevenson and Fowler
(2016) claimed that transition assessment and a discovery process focused on person-
centered results, but the transition assessment did not direct integrated employment. The
discovery process directed integrated employment by learning about what is important to
the adult with disabilities. The discovery process mostly centered on adults with
intellectual disabilities whereas the transition assessment addressed on all students with
disabilities. The discovery process also concentrated on immediate employment and the
transition assessment gathered information for employment, postsecondary education,
independent living, and instructional planning. Both processes when implemented
together could streamline collaboration of services between special educators and VR
counselors.
Parental involvement. The role of parent involvement has changed from a
passive to an active member of the IEP team. In the past, researchers predicted that parent
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involvement is one of 16 factors that increased the chance of employment for adults (Test
et al., 2009). Pleet-Odle et al. (2016) and Hirano, Garbaez, Stanley, & Rowe (2016)
added that a parent’s involvement in the education of their youth went beyond traditional
involvement activities and expanded into several roles as decisionmakers, evaluators,
collaborators, instructors, coaches, and advocates. Furthermore, these researchers
identified evidence-based predictors that included parental high expectations and
involvement in transition planning. To help facilitate progress in transition planning for
opportunities post-graduation and aging out of a transition program, Pleet-Odle et al.
(2016) gathered information from parent advocacy groups and compiled a “To-Do” list
for teachers, VR counselors, and other professionals. These researchers presented
strategies to promote high expectations and involvement from parents for post-school
success either in competitive employment or postsecondary settings.
First, teachers, VR counselors, and other professionals need to change parents’
feeling of powerless to empowerment by engaging them in training opportunities to
address transition-related school and adult support services, eligibility, and access.
Second, teachers need to organize collaboration meetings between families to explore
family support groups focused on transition issues and use social media and local
newspapers to celebrate student achievements as well as establish connections of families
with successful alumni. During the collaborative meeting, all professional staff need to
communicate with parents in a manner that respects their cultural-linguistic differences
and lifestyle priorities. Plus, teachers can begin planning for a student’s transition by
contacting families early in the school to discuss the student’s future goals and
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aspirations. Teachers can facilitate discussion of future goals and aspiration in the home
by providing the families with resources for behavior and self-sufficiency. Educators can
also improve citizenship skills by encouraging families to have their youth participate in
academic, recreational, extracurricular, spiritual, and community settings and events.
Lastly, the IEP team can empower parents to envision what their son/daughter’s future
will be and provide further resources in the process of either aging out or graduate with a
diploma.
Vocational rehabilitation (VR) agency practice. The law requires state VR
agencies to be “actively involved in the transition planning process with the school
districts (C.F.R. 361.22(b), 2004), instead of “when the student is nearing graduation”
(C.F.R 4424 Title 66, 2001). In fact, VR agencies in the U.S. served “almost one-third”
(p. 29; para. 2) of the transition-age population (Honeycutt et al., 2015a). Recently,
Burgess and Cimera (2014) discovered that VR service delivery was more successful in
low population areas than in populations of 10,000 and above, even though there were
adequate funding policies available to individuals with disabilities.
Earlier is better. In the local study area when the student with a disability was 14
years of age, some of the VR staff developed a service plan for making community
connections after the individual with a disability completed the online VR application.
Some counselors for VR requested an early registration for VR services so the students
could begin receiving services in their sophomore year of high school. Most school
districts do not start planning for postsecondary education until high school. Cimera,
Burgess, and Wiley (2013) explored if earlier transition planning by age 14-years resulted
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in better vocational outcomes for young adults with ASD. They argued that transition
planning and services provided at age 16-years instead of 14-years created more barriers
to employment with individuals with ASD. Their results also indicated that when states
provided earlier transition services over a span of three years; their service costs reduced
by 30%.
Honeycutt et al. (2015b) also suggested policies that combine factors such as
counselor skills, program development, and quality monitoring approaches to bridge the
gap from OOS. Furthermore, VR staff could define with consistency when youths with
disabilities should receive VR support, establish measures that reflect goals of
individuals, and standards to measure services and success (Honeycutt et al., 2015b;
Shipan & Volden, 2012. Honeycutt. (2015b) Also Honeycutt discovered the following
states’ transition outcomes: (a) youth who applied for VR services had percentage ranges
of 4 to 14; (b) youth who applied for and received VR services had percentage ranges of
31 to 82; and (c) youth who received VR services and closed with an employment
outcome had percentage ranges of 40 to 70. These researchers observed that there were
many different agencies and state-level factors that were concurrent with these
percentages. Honeycutt et al. (2015a) reasoned that due to the wide range of differences
between states’ transition outcomes for individuals with disabilities, policymakers could
develop indicators for agencies to assess services for the transition-age population.
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Successful Predictors of Work Access for Young Adults with Disabilities
Over the past few decades, young adults with disabilities experienced better
educational opportunities along with better inclusion and participation opportunities.
(Hatfield, Falkmer, M., Falkmer, T., & Ciccarelli, 2017; Katz, 2014). For example, over
the past three years, ASDSpeaks—a non-profit organization, Microsoft—a large
corporation, and Rising Tides Carwash—a small business, developed job opportunities
and coordinated with university research teams to learn more about addressing behavioral
and adaptive intervention and creating work-based setting employment for adults with
ASD. Chan et al. (2017) noted that sustained community employment predictors for
adults with ASD were living a large populated area, participating in inclusive education,
and having independent daily living skills. Similar to Chiang et al. (2012), Chan et al.
(2017) and Taylor, Henninger, and Mailick (2015) predicted a relationship between
sustained employment and a higher family socioeconomic status. The family socio-
economic status was unrelated to young adults with ASD with an average IQ having a
higher employment rate of 24.7% and a lower employment rate of 14% for young adults
with ASD with a lower IQ. Therefore, adults with ASD and intellectual disability
sustained employment better if they exhibited daily living skills such as self-care,
cooking, and housekeeping skills, and if they were living in a large populated area with a
transportation system.
Social Capital in Less Populated Areas
Incidentally, there was one parent participant out of the five parent participants
who expressed how the rural community where she lived assisted with providing her
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daughter with job experiences. She perceived the community to be trustworthy people
who helped to protect and include her daughter in community life. Middleton, Murie, and
Groves (2005) noted that social capital became stronger in a community due to an
extended period of community vesting.
Comparatively, Simplican et al. (2015) developed a model of the social network
and community participation to better understand the social inclusion of people with
intellectual and developmental disabilities. Their model illustrated how members in a
community benefited from the inclusion of individuals with intellectual and
developmental disabilities. These researchers endorsed social inclusion, but their model
may or may not apply to various people with disabilities.
Overmars-Marx, Thomese, and Meininger (2017) illustrated the challenges of
social inclusion in the neighborhood where residents with intellectual disabilities lived in
a group home. Specifically, people with intellectual disabilities only greeted their
neighbors yet interacted more freely with clerks at a store. Caregivers at the group home
supported the neighborhood social inclusion but struggled with creating opportunities for
the people with intellectual disabilities (Hermsen, Embregts, Hendricks, & Frielink,
2014). Thus, most people with disabilities require caregiver support to implement
community activities.
Amado et al. (2013) explained that lack of complete integration was due to (a) the
size of the community with larger communities having more segregated settings, (b)
family involvement, (c) extent of vocational services, and (d) the availability of
transportation. That is to say, people with disabilities have increased community presence
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rather than community organization for the facilitation of complete integration within
large towns and cities. However, a smaller community has less segregation, better family
involvement and vocational support services, and limited transportation availability.
Work Environment
The employer’s workplace environment determines the likelihood of young adults
with disabilities working in the competitive business. Ellenkamp, Brouwers, Embregts,
Joosen, and van Weeghel (2016) conducted a literature search of which environment-
related factors contributed to obtaining or maintaining work in competitive employment
for individuals with intellectual disabilities. These environment-related factors were (a)
arrived on time, (b) performed the job well with limited supervision, (c) received limited
accommodations, and (d) worked with a diverse company population. In comparison,
Erickson, von Schrader, Bruyere, and Van Looy (2014) found that employers differed
about hiring individuals with intellectual disabilities. Some employers who stereotyped
individuals with intellectual disabilities showed disengagement towards them while other
employers were positive about hiring employees with intellectual disabilities. Those
employers who were positive about hiring individuals with intellectual disabilities also
used sources of support in the workplace from coworkers, managers, job coaches, and
family members.
Some companies hired adults with disabilities when support services provided
better availability and quicker responsiveness to employers’ needs for job coaches and
other support staff. Plus, the employer who had a positive experience with hiring a person
with a disability considered other individuals with disabilities. However, there continue
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to be mixed employer attitudes such as negative stereotyping, disengagement, and
favorable reports about hiring people with intellectual disabilities (Ellenkamp et al.,
2016).
Presentation. There continue to be stigmas about the employability of individuals
with disabilities by other employees who worked for a plant. Nota, Santilli, Ginervra, &
Soresi (2014) randomly assigned 80 employees who worked in the metalwork industry to
either one of these conditions:
• Candidates with disability introduced by referring to their disability classification.
• Candidates with disability introduced by mentioning their strengths.
Some randomly selected participants had heard descriptions of individuals with
intellectual disability, hearing impairment, and behavioral problems such as
aggressiveness and angry outbursts. Nota et al. (2014) indicated that employers were
more accepting of individuals with intellectual disability and hearing impairment than
individuals with aggressiveness and anger problems. When employees provided
descriptive information about the candidates with disabilities, the employee participants
became more socially accepting of all three individuals with disabilities. These
researchers also suggested that the type of disability and how the strengths of individuals
with disabilities influenced employer attitudes (Nota et al., 2014). Although this study
occurred in Italy, the results showed that manufacturing industries might be starting to
demonstrate more social acceptance towards individuals with disabilities.
A Change of Employer and Employee Perspective
Some industries provided more opportunities to adults with disabilities than
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others. Erickson et al. (2014) showed that an employer change in attitude occurred
because employers acknowledged fewer organizational barriers to hiring individuals with
disabilities as a result of fewer attitudes/stereotypes and more supervisor knowledge of
accommodations, cost of training, or supervision. However, Houtenville and Kalargyrou,
(2015) noted that there continued to be less accepting attitudes from employees and
supervisors within the construction, government, retail trade, transportation and
warehousing, wholesale, and financial activities. Conversely, the service industries were
more willing to hire adults with disabilities. For these reasons, the employer and
employee attitudes towards hiring and working with individuals with disabilities are
dependent upon the service type industries, supervisor knowledge about hiring
individuals with disabilities, and the reduction of other employee stigmas concerning
working with other adults with disabilities.
Some industries hired community rehabilitation (CR) providers to facilitate the
development of natural supports in the workplace and consultative supports for company
management and workers. The CR provider supported the employee with a disability by
(a) identifying opportunities for workplace inclusion, (b) formulating strategies for
communication and relationships with co-workers and managers, (c) providing
consultation services, and (d) assessing the outcome of workplace interventions (Hagner,
Dague, & Phillips, 2014). The CR providers stay current with rehabilitation issues by
attending continuing education credit classes either in-person, at conferences or through
online training and a list of training found on the New England TACE center website.
Furthermore, Hagner et al. (2014) noted that CR providers support suggested the
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inclusion of workers with disabilities and successful employment within competitive
workplaces. In a follow-up study, Hagner, Dague, and Phillips (2015) observed
employees without disabilities were willing to help employees with disabilities more than
75% in the workplace. The data from these researchers suggested increased support for
hiring employees with disabilities in a competitive workplace setting.
Sheltered employment versus competitive employment. Sheltered workshops
were initially set up to teach individuals with disabilities job skills and how to obtain
employment. The shelters were also meant to protect individuals with disabilities from
public judgment and shame (NDRN, 2012; Rinaldi, 2014). Some employers were given
certification by the Department of Labor Wage and Hour Division to pay individuals with
disabilities. However, these individuals earned less than minimum wage by their
employers. Siperstein et al. (2014) argued that sheltered workshops did not provide
pathways for independent employment and those VR agencies needed to provide access
for young adults with intellectual disabilities to actively participate in the competitive
workforce. The employer’s ability to pay an hourly wage below the federal minimum is
based on an outdated reliance on “an absolute connection between pay and productivity”
(O’Brien & Callahan, 2010, p. 2). The sub-minimum wage philosophy was developed
more than 70 years ago and was designed to help veterans return to industrial work
(NDRN, 2012). In the past, politicians and advocates for young people with disabilities
claimed that individuals with disabilities had earned more money in sheltered workshops
than they would make with supported community work.
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Historically, individuals with disabilities worked in low-skilled or repetitive
manufacturing-type labor. Cimera (2017) indicated that individuals with disabilities
earned more hourly wages in the community. However, he cautioned that earned
community wages for individuals with disabilities depended on the following variables:
(a) disability type, (b) occupation, (c) VR agency, and (d) the region. Still, individuals
with significant disabilities use high-power wheelchairs for mobility and high-tech
communication devices for communication which has given them more employment
opportunities within the business.
Tool for supporting communication in the workplace. Researchers developed
communication tools to ensure effective communication between young adults with
intellectual disabilities (ID) and ASD spectrum disorders (ASD) and workplace
supervisors, co-workers, and support staff. The young adult with ID/ASD used
“Communication Stories” to advocate for themselves in the workplace (Pouliot, Muller,
Frasche, Kern, & Resti, 2017). The young adults with ID/ASD applied these
“Communication Stories” because the electronic application provided a single page text
paired with pictures, a video with audio recordings. They also received quality
monitoring assistance of the application (van der Meer et al., 2013; Carter et al., 2014). If
a young adult with ID/ASD has no access to high-tech applications, the “Communication
Stories” are paired with PowerPoint or word processing software and printed onto
cardstock with minimal reflection lamination.
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Work Performance and Quality of Life for Young Adults with Intellectual
Disabilities
Adults with intellectual disabilities benefit from job experience and higher-level
adaptive skills. Siperstein, Heyman, and Stokes (2014) indicated that 72% of adults with
intellectual disability who maintained competitive employment had job experience before
the age of 21. These adults with intellectual disabilities were competitively more eligible
for work when they had high-level adaptive skills and were without emotional or
behavioral problems, and they lived independently or in a group home rather than with
their families.
Siperstein et al. (2014) and Carter et al. (2011) agreed that adults with an
intellectual disability had better employment outcomes due to their higher functioning
adaptive skills and due to their being less independent on families. Furthermore,
Simonsen and Neubert (2012) and Wehman et al. (2014) indicated additional vocational
skills that had a highly significant relationship with competitive employment for adults
with disabilities. For example, adults with intellectual disabilities who were employed by
competitive business had greater communication, self-feeding, self-dressing, orientation
ability to get from one place to another, and household responsibilities. Other researchers
investigated the quality of life for people with intellectual disabilities.
Blick, Litz, Thornhill, and Goreczny (2016) compared the quality of life for
people with intellectual disabilities who worked for competitive employment, sheltered
workshops, and adult day care programs. Their research results indicated that individuals
with intellectual disabilities who worked for competitive employment participated in
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more community events than sheltered workshops and adult day care programs. These
people with intellectual disabilities also reported having access to a bank account and
creating their daily schedules. Therefore, individuals who worked in competitive
employment experienced life much like their co-workers. Subsequently, students with
intellectual disabilities benefited from programs that taught adaptive skills from
elementary into vocational education programs and included the practice of these skills
outside of the school at the job sites (Bouck, 2014; Siperstein et al., 2014).
Employment Outcomes for Young Adults with a Mild Intellectual Disability
Researchers noted that 60% of employees with a mild intellectual disability
worked employed part-time and 78% of those individuals earned at or above 7.08 dollars
per hour. Forty-three percent of the employees with mild intellectual disability also
reported that “they liked their job fairly well” and 29% reported that “they liked their job
very much” (Bouck and Chamberlain, 2017, p. 218). Surprisingly, the employees with a
mild intellectual disability who did not receive postschool job training were likely to be
more successful in working part-time or full-time. This research may or may not have
started a paradigm shift towards on the job experiences as opposed to off-site job training
and assessment.
Overcoming Workplace Barriers of Young Adults with Autism Spectrum Disorder
(ASD)
Young adults with ASD experienced interview and workplace barriers.
Researchers identified the following job seeking and workplace barriers: (a) resume
development, (b) phone contact, (c) interviews, (d) the adaptation to new job routines, (e)
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communication, and (f) social interaction (Gold, Fabian, & Luecking, 2013; Muller,
Schuler, Burton, & Yates, 2003). Other researchers found possible solutions to job-
related barriers. Lorenz, Frischling, Cuadros, & Heinitz (2016) collected data from an
online survey to 65 individuals with ASD (36 females and 29 males) which included
quantitative data measures. These researchers qualitative results indicated that adults with
ASD used communication (23%) and acceptance of change (21%) over external help
from work environment (15%). Lorenz et al. quantitative results showed the highest
correlation between personal strengths in the workplace as self-efficacy (r = .45),
occupational self-efficacy (r = .48), life satisfaction (r = .62), and job satisfaction (r =
.81). These correlations between control items were moderate to strong. Therefore, these
individuals with ASD broke through workplace barriers when they found an appropriate
work setting that addressed their individual needs.
Employment Outcomes for Young Adults with ASD
Researchers have evidence that young adults with ASD demonstrated increased
weekly hours and independence in the workplace. Specifically, Schall et al. (2015)
conducted a 5-year random clinical trial (CRT) with 49 high-school-aged individuals
between 18 and 21 years who diagnosed with ASD. These participants were eligible for
supported employment and exhibited independent self-care skills. At the competitive
work-site, the non-control participants with ASD received long-term support services.
These support services were consultation with the employer regarding workstation design
and task assignments, behavioral problem solving, and ways to increase productivity.
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First, the researcher's analysis of wages earned by young adults with ASD showed
US wages between $9.53 to $10.66 per hour, and those participants who employed in the
control group earned US wages between $9.67 to $10.00 per hour. Second, the non-
control group worked significantly more hours after a year of employment. After
graduation, the range of hours worked for employed young adults with ASD (non-control
group) was 0-40 hours weekly within 3- months and 12-months whereas the control
group was 0-22.5 hours weekly within the same amount of time. Plus, individuals with
ASD who needed partial physical assistance a least once a day for up to 2-hours to
complete a task with acceptable speed progressed to no support to complete the task. As a
result, young adults with ASD had a higher employment rate than the control group and
an employee retention rate of 83.8%. Researchers also noted that the predictors of social-
communication showed how participants evolved from verbal/gestural prompting daily
for 30-minutes to 2-hours to interact with co-worker and supervisors to no support.
Therefore, individuals with ASD who worked in competitive workplaces eventually no
longer required support staff.
Summary of Paradigm Shift Towards Employment of Individuals with Disabilities
In the hiring process, young adults with intellectual and other disabilities can
experience positive outcomes. I have the main paradigm shifts towards employing young
adults with intellectual and other disabilities. The main paradigm shifts are (a) education
changes, (b) social capital, (c) reduction of sheltered workshops, and (d) more acceptance
of people with disabilities working for competitive businesses.
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There is more research on how to implement assessments, include parents, and
collaborate with VR for employment planning. First, the transition assessment collects
information to learn what changes apply to the IEP transition plan and the discovery
process provides immediate job experiences on or off the high-school campus (Stevenson
& Fowler, 2016). The high parental expectations and involvement in the transition
planning process predict improvement of postsecondary and employment success for
their young adult children with disabilities (Pleet-Odle et al., 2016). VR services for a
young adult with disabilities reduce costs and provide optimal services when serving a
population of less than 10,000. VR agencies that offer enrollment of 14-years of age and
facilitate counselor skills, program development, and quality monitoring approaches
provide the best possible services to the community (Cimera et al., 2013; Honeycutt et
al., 2015a).
Another successful predictor of work access for young adults with disabilities is
social capital. Researchers also indicate that caregiver support for young adults with
disabilities is necessary for better integration into the community (Overmars-Marx et al.,
2017). People with disabilities who live in larger cities experience greater amounts of
social isolation and less assistance from VR, yet they receive better access to
transportation. Conversely, smaller communities of less than 10,000 people have better
community integration and V.R. support, but transportation for adults with disabilities is
inadequate (Amado et al., 2013).
When competitive workplaces are open to leaving social capital footprints in the
community due to better support networks with job coaching of individuals with
148
disabilities, there is less stereotyping, and more understanding of an individual’s
disability. Moreover, in a competitive workplace, individuals with disabilities are
punctual and stay with companies for extended periods of time (Ellenkamp et al., 2016;
Erickson et al., 2014). Second, young adults with intellectual disabilities employed in
competitive workplaces experience different job scenarios before 21-years of age. These
people with intellectual disabilities also have higher level adaptive skills and no type of
behavior or emotional issues (Siperstein et al., 2014). And any individual with a mild
intellectual disability had part-time or full-time employment without postsecondary
training (Bouck & Chamberlain, 2017; O’Brien & Callahan, 2010).
Similar to adults with intellectual disabilities, adults with ASD need a period of
on the job support with a community support person. Then, the adult with ASD can
become more independent at the competitive workplace. Some of the independent
characteristics are social-communication, completing tasks at the same rate as other
employees, and same pay and work hours as co-workers (Schall et al., 2015).
In the past 70-years states and federal lawmakers established and amended
funding for sheltered workshops. The initial purpose of sheltered workshops was to
protect the well-being of veterans returning from war and individuals with disabilities.
However, there has been a paradigm shift about how to employ young individuals with
disabilities where sheltered workplaces are seen as not providing services toward
independent employment and how VR services need to provide more access to
competitive workplaces for young people with disabilities (Erickson, Lee, & von
Schrader, 2016; Kraus, 2017; Siperstein et al., 2014).
149
Project Description
I developed a position paper that addressed why businesses should hire young
adults with disabilities. The position paper can be used as a guide by business
organizations to discuss the implementation of jobs for individuals with disabilities along
with community supports such as universities, VR, and other community support
specialists.
Existing Supports
The position paper provides examples of existing supports of successful business
models and contact information for business organizations that mentor other business
owners interested in hiring employees with disabilities. Some of these business mentors
could provide additional information on how to transform the culture of a competitive
workplace. Some business mentors use coaching and transformation strategies in
competitive workplaces (see Figure 3). To do this, the mentor guides the employer and
employees through disorienting difficulties by
• helping the employees think through their dilemmas by encouraging critical
reflection to help identify frames of reference,
• using stories or ask for examples from the employees that illustrate how the
current predicament is not remarkable, and there is no need to feel isolated,
• helping the employer and employees analyze a variety of interpretations and
alternative scenarios, the potential roles, and relationships,
• assisting employer and employees to formulate alternative plans, and
150
• providing examples of models for functioning from the perspective of an
employee with a disability (Cox, 2015).
There is no particular step-by-step process when the mentor uses these strategies.
Figure 3. Coaching guidelines.
Roles and Responsibilities
I discussed roles and responsibilities that the business owner could consider to
form partnerships with community members who are knowledgeable about the needs of
young adults with disabilities.
Community engagement and partnerships. Community involvement and
cooperation are ongoing collaborative learning experiences that assist in integrating
parents and young adult children with intellectual and other disabilities with lawmakers,
scholars, and business partners. The business supporters of a competitive workplace for
Coaching
And
Transformation
Critical Reflection
Analyze Interpretations and Alternative
Scenarios
Model
ExamplesStories
Formulate
Alternative
Plans
151
young people with disabilities would identify a safe environment where their voices and
concerns can be listened to and acted upon by parents, scholars, and lawmakers (Molina,
2013). The business owners could read the position paper to implement a value-based
model that calls for action through community partnerships. Here are a few examples of
who those community partnerships could be.
University personnel. University professors, graduate assistants from various
departments of education, social work, nursing, and other humanity areas could develop
and share knowledge about effective delivery of job adaptions and modifications. The
professors and business partners could organize colearning environments where students
at the university could coach the workers with disabilities.
Fieldwork. Graduate assistants from multiple departments could colearn with
parents, professors, and business managers about how to implement work projects that
could better improve the dignity and self-worth of young adults with intellectual and
other disabilities.
Potential Barriers
I speculated that potential barriers would arise from human rights policies and
procedures that were unaddressed by human resources and floor managers. Another
possible obstacle to workplace inclusion of adults with disabilities would be how to
manage an employee with disabilities accommodations and how another employee would
react to new diversity and equitable standards.
152
Needed Resources
For the project to be successful in a competitive workplace, businesses need to
have resources available to them. Therefore, job coaches might have to collaborate with
the employer on how to use colearning and coaching strategies. The employer would
implement training on diversity and equity standards to all levels of personnel within the
company. The timeline for training would begin before the company started to hire adults
with disabilities and during the training of employees with disabilities. The duration of
the training could be assessed by observation and evidence of inclusive behavior among
co-workers and decided by the management of the company.
Potential Solutions to Barriers
I speculated that mutual respect between the employer and employees with or
without disabilities addressed the possible solutions to barriers. The employer needs to
establish a virtuous organization to accomplish mutual respect. A virtuous organization
has top-level management that openly exhibits good citizenship behaviors such as
kindness, empathy, courage, and compassion towards employees with or without
disabilities (Whitt, Cawley, Yonker, & Polage, 2014). Given a virtuous organization that
is led by top leadership provides over time, a workplace environment that supports
accommodations for employees as a regular practice may assist with minimizing stigmas.
A virtuous organization could provide accommodations such as (a) help with
transportation, (b) offer a flexible work schedule, and (c) assign a personal care assistant
(Anand & Sevak, 2017; Kregal, 2012). In business, the transformation occurs when
companies are willing to take risks and push the boundaries of bureaucratic and
153
traditional practices. Business organizations who participated in social transformation
projects demonstrated a sense of innate worth and dignity of all people. However,
business and community partners need to develop trustworthy relationships over an
endless amount of time.
Project Evaluation Plan
I used a goal-free evaluation (GFE) to assess the likelihood of businesses reading
and applying the principles of this position paper. I used the GFE because a goal-based
evaluation (GBE) would not address the innovations and innovative initiatives of this
position paper (James & Roffe, 2000; Scriven, 1991). In contrast, the goal-based
evaluation (GBE) measured specific objectives. In comparison, the GFE does include
anticipated effects, measured outcome, or impacts which can be intended or unintended.
Instead, there are observed behavior and actions of people that are unstructured by the
evaluator (Scriven, 1991). Also, the GFE applied when a business does not have program
goals for a particular project or event (Youker & Ingraham, 2013).
The GFE can be combined with the GBE after GFE has provided the necessary
information for the business. Such an occurrence happens when the GFE needs further
explanation of anticipated effects such as management factors, employee support, and
organizational factors (James & Roffe, 2000). In this case, the business might prefer to
use a survey. Some companies use surveys to discover certain information about a
particular group of people (Stake, 1970). The employer could send out a measurable
survey to all employees at the beginning, middle, and end of the year. The manager could
modify the survey to meet the needs of all employees. However, these methods could not
154
be suitable for all business entities, and in that case, businesses could custom design their
assessment parameters.
As a broad goal, I decided to have businesses review the position paper that
discusses why it is essential to hire young adults with disabilities. When businesses
review the position paper, I further facilitate this goal by providing a list of business
organizations that supported employment of people with disabilities and provided
examples of other start-up or companies that had changed their hiring policies. I
anticipate that the outcome of this goal would be different for each business. The merit of
the position paper is based on the actual activity of companies to hire more young adults
with disabilities. The timeline for implementation of this goal is dependent upon the
actions of business persons and stakeholders who read this position paper. The process of
learning and of discussing the position paper with other business organizations could
happen with immediacy, during the process of starting up a new business or changing a
current business model, which could take six months to a year or longer.
Stakeholders
The stakeholders for this project are business organizations and their employees.
The business organizations have a vested interest in hiring young adults with disabilities.
The main vested benefit would be to add diversity and to promote social responsibility
within the workplace. The employees of a business have a similar vested interest who
could be motivated by the need to witness a department’s success. Other stakeholders
might be business mentors and organizations with a common goal to increase the number
of young adults with disabilities in competitive workplaces. Some stakeholders who
155
might act as advisors for the business could be university personnel and students to
promote their educational research and advocate for young adults with disabilities.
Project Implications
Closing the Gap between Services and Access
Individuals with disabilities are a homogeneous group. Each with disabilities and
without disabilities has different job preferences and job skill strengths. Therefore,
schools and outside agencies would benefit from closing the gaps between services and
access. According to new provisions in the law, Workforce Innovation and Opportunity
Act of 2014 (WIOA) requires that VR agencies adopt a role in preparing youth with
disabilities for competitive integrated employment. The statue includes provisions to
increase the role of VR agencies in providing pre-employment transition coordination
and services as well as supports employment services for young adults. The law also
requires formal cooperative agreements between state VR, Medicaid, and developmental
disabilities agencies that address the delivery of VR services. Furthermore, the WIOA
statues limit the number of young adults with disabilities who could begin jobs that pay
less than minimum wage. Thus, the WIOA prohibits schools from contracting with sub-
minimum wage providers.
According to the former Department of Labor Secretary, Tom Perez (2015) in a
blog announcing the appointments to the Advisory Committee on Increasing Competitive
Integrated Employment of Individuals with Disabilities,
Competitive integrated employment works – for individuals, for employers and
society. Models have repeatably shown that people previously considered
156
“unemployable” can work, can be productive and can achieve independence. As
such, investing in this approach is a wise use of public funds (paragraph 5).
The employer benefits from employing people with disabilities, and competitive
integrated employment is an economic responsibility of communities.
Preparation for employment. During the transition planning process, the
students with disabilities would develop personal goals that prepare them for life after
high school graduation. Students with disabilities would benefit from being active
participants in their transition planning from age 14 until graduation, and then teachers
would facilitate better plans for students’ future. As previously discussed, students with
disabilities would be provided with employment experience as they attended high school
because students with disabilities who participate in transition planning, employment
opportunities in the high school and the community demonstrate improvements in self-
determination and self-advocacy skills. They also show improvement in vocational skills
such as the computer, organizational, and mechanical skills through work experience
projects (Hatfield, Falkmer M., Falkmer T., & Ciccarelli, 2016).
Competitive workplace. Businesses require access to (a) readily available job
coaches, (b) scholars at universities with knowledge about accommodations for
workplace environments as well as family member support. When a business chooses to
implement job programs that hire individuals with disabilities in turn these individuals
with disabilities have an improved quality of life. These young people with disabilities
gain positive experiences of working with other employees, and this added experience
improves these individuals’ socialization skills. More importantly, there could be fewer
157
gaps in employment for individuals with disabilities because there would be more job
opportunities. Equally important, individuals with disabilities would experience a greater
variety of jobs that would take into consideration the individual’s job preferences and job
placement when businesses would form partnerships with job coaches, scholars at the
university, and family member support.
Applications of the Project
The application of this position paper is to stimulate conversations between
business organization leaders about (a) gaps of job experiences before and during
transition services and after aging out of a transition program, (b) agreement when
community employment begins at competitive worksites, and (c) policies of how
community businesses can address these issues through positive change. Some of these
conversations could start with parents, high school students, transition teachers, and the
principal about how to provide equitable employment opportunities for all students.
Alternatively, business groups might benefit from holding a town hall meeting to discuss
with lawmakers what needs to be done to employ adults with disabilities. Communities
could proactively implement an employment project that could stimulate involvement
from lawmakers, business partners, parents, and scholars to increase awareness of
competitive employment opportunities for young adults in their community. State
agencies could educate other members of the community about the risk of social
isolation, what marginalization is, and how to assess fair practices concerning young
adults with intellectual and other disabilities.
158
Future Research
More research could conduct how to
• assess and implement job preference for young adults with various types of
disabilities,
• provide better community awareness of the social and psychological effects of
social isolation for young adults with disabilities and their parents,
• promote accessibility to a variety of competitive workplaces,
• organize communities to provide safe, accessible transportation, and
• change policies that marginalize students with disabilities to support a more
equitable learning community from elementary continuing up to 26-years of
age.
159
Section 4: Reflections and Conclusions
Project Strengths and Limitations
The strengths of this project were that the position paper provides topics of
discussion about employing people with disabilities for competitive businesses. The
position paper also includes local and national examples of businesses in which people
with disabilities received training and employment. Using information gleaned from real
cases, I was able to provide evidence of how business leaders could implement the
contents of this position paper. Other strengths of this project were that the position paper
revealed historical facts and benefits of employing people with disabilities in competitive
workplaces.
The limitations of this project are that the position paper lacks a chapter on how to
facilitate employment of young adults with disabilities. I did not write this section
because businesses need to know why their establishment benefits from employing
individuals with disabilities as a starting point for discussion. Then business could be
more receptive to facilitating employment of individuals with a variety of disabilities.
Recommendations for Alternative Approaches
I reflected on an alternative approach to address the employment of young adults
with disabilities that incorporated university support. The university support staff could
be graduate students and professors with a specialty in adult rehabilitation or transition
services. The potential project could provide integrated project experiences to facilitate
innovative approaches to promote the employability of people with disabilities. The
project would take place in a controlled competitive workplace environment with
160
immediate vocational assistance from graduate students and professors. However, this
alternative approach would not address the overall problem of businesses continuing to
employ fewer people with disabilities than people without disabilities. For example, in
the local study area, the unemployment rate was 3.5% for individuals without disabilities.
However, the unemployment rate for individuals with disabilities was 9.9%.
Scholarship, Project Development and Evaluation, and Leadership and Change
In this section, I describe my experiences with scholarship, project development
and evaluation, and leadership and change. The project development and evaluation
include my role as a scholar, practitioner, and project developer.
Scholarship
I learned that the content of the position paper required the same amount of
research depth as the qualitative study. I was naïve to think that writing a position paper
would be like writing a 10-page paper for a college-level class. I experienced excitement
when I researched and found appropriate sources of information, but I also felt
discouragement sometimes when I located pertinent sources of support. I also found that I
needed to balance my written expression advocacy words with the need to spark interest
in the business community.
Project Development and Evaluation
After discussion with my chairperson and methodologist, I decided that a position
paper would meet a community and educational need. I addressed this need by writing
about why businesses could hire individuals with disabilities instead of how companies
could employ individuals with disabilities. It was necessary to answer the question “why”
161
because people with disabilities continue to be unemployed at a lower rate than people
without disabilities, despite community volunteer and funding supports as well as state
and federal legislation (Taylor, Henninger, & Mailick, 2015; Ticha, Hewitt, Nord, &
Larson, 2013).
Scholar. I have developed better scholarly writing skills and increased my
knowledge about how to write narratives so that different reader audiences will benefit
from the content. I have also learned that procrastination is not my friend. However,
when I changed my study environment to improve my concentration, I discovered that
classical music provided a calming experience for writing. I continue to always be in a
state of ‘catch-up’ because I work 30 hours a week and balance family member care with
doctorate work. Also, I experienced occasional moments of disorganization and mental
fatigue. From these weaknesses, I have learned that files on the computer needed to be
concrete and accessible. I tend to be a free spirit, so I had to change many of my
behaviors to accommodate the scholarly tasks of being a doctorate student.
Practitioner. I have become more aware of how I address postsecondary needs of
high school students with disabilities and how to prepare them for competitive
employment. I have been asking my students what their goal for employment is, and then
based on that, I can make changes to their plan or continue with the same transition plan.
I learned from research that these strategies promote self-determination and self-
advocacy skills in my students.
Project developer. I enjoyed the project development stage of the dissertation
process. The project development stage allowed me to dream and be creative. I found it
162
surprising that while the project development stage allotted moments of creativity, I
continued to be mindful of alignment and how literature should guide but not dictate
pertinent topics of discussion to write in the position paper. After all, this position paper
was for the business community audience.
Leadership and Change
I have always been a leader for change in any workplace setting by integrating my
speech-language pathologist skills of teaching individuals with disabilities how to
independently communicate and socialize with peers, other employees, and other
members of the community. I have a stable code of ethics to uphold the dignity of
individuals. Over my twenty-plus years as a speech-language pathologist, I voiced my
opinion about the imbalance of services to students who were living in poverty, were
homeless, or could not fight for services on their own. Thus, I am always reading
research articles and thinking of ways to improve the quality of life for individuals with
intellectual and other disabilities through the promotion of inclusion into the community.
Reflection on the Importance of the Work
A friend of mine who grew up in Africa said, “It takes a village to raise a child.”
This Nigerian proverb has been translated multiple times into many languages, and it
holds true to my own life. For, I discovered a village of supporters as I revised, analyzed,
synthesized data and content multiple times, and discussed ways to implement the study
in the community to promote social change. I believe I would have quit my scholarly
journey without the support of family and close friends.
163
The importance of writing practice and editing skills became my most significant
challenge due to the slow nature of these processes. I continued to revise and edit because
I knew that writing is a process that takes years of practice. I have heard different
perspectives from other doctoral students on what the terminal journey was for them—a
test of endurance and persistence. To me, this doctoral program challenged my fears of
academic failure, maintaining the balance between work, home, and academic life as well
as the ability to push myself through episodes of mental fatigue. With this in mind, I
would advise others to take the doctoral journey because it strengthens character and
validates a person’s belief system about working together as a village of concerned
citizens for the people in the community without a voice.
Conclusion
It takes a community of caring individuals to offer opportunities for social event
participation, part-time or full-time employment, and job coaching to young adults with
intellectual and other disabilities. Social change takes constant time and energy from
progressive thinking community members that are will to transform old policies and
procedures. Schools, outside agencies, and competitive workplace employers can be
source community change and support to young adults with disabilities who want access
to employment and community inclusion. Business leaders need to include workplace
diversity training and initiate company-wide social events for employees with or without
disabilities. A virtuous organization forms over time when employers promote mutual
respect and provide a nurturing positive team experience for all employees with or
without disabilities. As a result, top management in a virtuous organization actively
164
implements workplace personnel supports and makes accommodations for employees as
a regular practice.
165
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Appendix A: The Project
Reasons for Businesses to Embrace Diversity in the Workplace
By
Elizabeth J. Strong
In a state in the Western United States, business development is thriving and benefiting
from an unemployment rate of 3.5%. However, 9.9% of individuals with disabilities
continue to be unemployed. Of the 9.9%, about 40.8% of individuals with disabilities
work in sheltered workshops. The purpose of this topic is to provide businesses with
background information and positive reasons for employing individuals with disabilities.
The topics that address the problem of businesses not embracing diversity in the
workplace are learning foundations tailored to businesses and answering why young
people with disabilities would benefit from employment in competitive workplaces.
These are the specific topics to address:
the historical changes in the laws;
the possible impact of the laws about employment;
the myths and myth busters about the employment of individuals with
disabilities;
the application of hiring individuals with disabilities in different industries;
examples of companies who are employing adults with disabilities; and
resources in Utah for the inclusion of young people with disabilities within the Salt Lake City area.
The optimal outcome of learning more about this topic would be that businesses explore
how to implement a plan to increase employment of individuals with disabilities.
Historical Changes in the Law
In 1840 the Perkins Institute for the Blind in Massachusetts opened to provide jobs
for individuals with blindness. These individuals segregated from competitive job
markets to create permanent job opportunities for them (Hoffman, 2013, NDRN,
2012). Unfortunately, in February of 1934, President Franklin Roosevelt issued an
Executive Order stating that it was all right to pay individuals with disabilities below
the minimum wage. Then in 1938, the Fair Labor Standards Act (FLSA) passed and
204
created a special exemption for employers to provide payments that were
significantly lower than minimum wage to workers with disabilities.
Sheltered workshops were popular from
1950’s and 1960’s. The Developmental
Disability Assistance and Bill of Rights
(DD Act) passed in 1963. The DD Act
focused on support and opportunities for
independence, productivity, integration,
and inclusion of young people with
disabilities in the community that
emphasized employment. However, in
1966 PL 89-601 created a broader
definition under the FLSA by increasing
the number of workers that can be paid
less than the federal minimum wage while
also increasing the number of sheltered workshops. Then in 1973, the US government
passed the Rehabilitation Act which provided a clear emphasis on the importance of
competitive wages for all types of individuals with disabilities (PL 93-112, 1973). In
1986, the FLSA amended again, and this amendment removed any minimum wage
floor for workers with disabilities which could lead to employers exploiting their
employees with disabilities. In 1990, the U.S Congress passed the Americans with
Disabilities Act (ADA). The Congress enacted the ADA to eliminate discrimination,
segregation and ensured that individuals with disabilities fully participated in all that
society had to offer them.
Furthermore, the U.S. Supreme Court’s decision in Olmstead v. L.C. held that the
ADA required the removal of individuals with disabilities from institutional settings
and into communities if possible (Hoffman, 2013; Novak, 2015). In 1999, Justice
O’Connor and other justices acknowledged two reasons why institutionalization did
not fulfill the purposes of the ADA:
1. “Institutional placement” of individuals with disabilities who can “handle and benefit from
community settings perpetuates unwarranted assumpts
that [they] are incapable or unworthy of participating in
community life” (Olmstead v. L. C., 527 U.S. 581,600,
1999).
2. Institutionalization “severely diminishes the everyday life activities of individuals, including family relations, social contacts, work
options, economic independence, educational advancement, and cultural enrichment”
(Olmstead v. L. C., 527 U.S. 581, 601, 1999).
205
Impact of the Laws
Despite the Center for Medicare and Medicaid Services (CMS) and the Rehabilitation
Services Administration (RSA) agreement with the courts; the states continued to access
money that kept sheltered settings for individuals with disabilities. As a result, the current
Social Security Law does not address employment opportunities that are integrated and in
the community settings (Hoffman, 2013). Therefore, employers of sheltered workshops
pay subminimum wages to
individuals with disabilities. Furthermore, the Department of Labor (DOL) Wage and
Hour Division was given the authority to issue certificates to employers who allowed
employers to pay less than the average wage if a worker’s disability interfered with their
productivity or earning capacity on the job. Consequently, these individuals with
disabilities remain dependent on public benefits and subsidies because their employers
pay less than the minimum wage and do not provide benefits (NDRN, 2012).
The workplace is not to be in a segregated setting. The NDRN (2012) advocated for
customized employment instead of sheltered workshops. The model for customized
employment determined the strengths and interests of the individual with a disability, and
the needs of the employer. The employer’s customized job addressed actual tasks that
needed completion in the workplace. These employers also individually negotiated and
developed reasonable accommodations and support necessary for an individual to
perform their job. Obviously, these companies respected employees with disabilities
skills, preferences, and interests.
206
The NDRN continued to argue that sheltered workshops lead to no end. The NDRN
(2012) claimed that:
1. Job training should not take 10 to 20 years to get a job, especially if the job does not match the preferences, skills, and interests of the individual with
disabilities.
2. There are limited contracts and types of jobs at sheltered workshops. Individuals with intellectual and other disabilities spend their day doing small
challenge work such as sorting, collating, labeling, folding, mailing, sewing,
subassembly, heat sealing, hand packaging which are bulk services for
businesses (Migliore, Grossi, Mank, & Rogan, 2008).
3. Most of the job experiences entail bench work and do not promote self- determination, self-direction or skill development.
4. Sometimes the environment that these individuals work in does not take into consideration the persons’ disabilities. For example, an individual with ASD
could have a difficult time working in the crowded and busy room or an
individual with hearing impairment placed in loud and dusty industrial setting.
5. Sheltered workshops usually keep their best employee when these employees would match a job in competitive employment.
Although individuals with disabilities are starting to work in new competitive
employment sites; there continue to be more segregated settings. The NDRN (2012)
calculated that for every one person disability working in competitive employment, there
are three other persons with disabilities working in a sheltered workshop. However,
Novak (2015) reported that there had been some changes in the federal Medicaid rules
that created financial incentives for states to rebalance their long-term support service
systems towards entrepreneurship or competitive workplaces. Although Rinaldi (2014)
showed successful outcomes of competitive workplace
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partnerships with individuals with disabilities in the community, there continues to be a
gap in employment for adults with disabilities. Rinaldi (2014) also indicated that several
sheltered workshops and facility-based day programs in numerous states and
communities unnecessarily segregated individuals with disabilities which violated of the
ADA. Since 2011 the US Department of Justice (DOJ) has been enforcing the ADA’s
mandate in the Olmstead case. For example, the DOJ (2014) discovered that thousands of
individuals with intellectual and developmental disabilities were spending the majority of
their day receiving segregated services. And these individuals with intellectual and
developmental disabilities were found to have the capability to perform at an integrated
work site in the community. As result of DOJ’s discovery, Rhode Island has a ten-year
agreement to provide (a) supported employment jobs for approximately 2,000 transition-
age youths and adults and (b) prepared career preparation experience—mentoring, job
site visits, and internships for integrated employment at competitive wages (Novak,
2015).
Our Company Would like to Offer you a Job
The idea of hiring an individual with disabilities is widely tolerated but nationally not
accepted by all community members. Unfortunately, young people with disabilities who
received
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the government supported employment services are earning a minimum wage and only
20 to 25 hours a week of employment. The Workforce Innovation and Opportunity Act
(WIOA) is legislation that was specifically designed to help intellectual, and development
disabilities job seekers access employment, education, training, and supportive services.
Under this bill, states have 10 years to resolve the following four ADA violations:
1. Individuals with disabilities will receive assistance with finding jobs in communities that provided minimum wages and offered the maximum number of
hours consistent with the employee’s abilities.
2. Individuals with disabilities will receive recreational and educational support for non-work activities in the community.
3. High school students with intellectual or developmental disabilities will prepare for competitive employment through internships and mentoring programs.
4. The public funds would shift from sheltered settings to services in integrated settings (McLain & Walus, 2015).
Business Learning Foundations For Success
Businesses with management who buy into the idea of a diversified workplace need a
learning foundation to facilitate the transformation of all employees. Also, business
management needs to possess personal reflection, leadership, and collaboration skills for
facilitation of workplace diversity. Such a program could be possible with the following
learning foundations: (a) transformation theory, (b) colearning theory, (c) coaching, and
(d) mutual respect. I combined educational and business frameworks to provide a
209
foundation or a method of thinking for the implementation of increasing employment of
individuals with disabilities.
Transformation of the Business
Transformation does not occur instantly. Every employee goes through an individual
transformation while adjusting to changes within the workplace. There can be a coach
who guided the employees with diversity training and a support system within the
business that allows all employees to adjust to a more diverse workplace at the
employees’ own pace. For example, the H.R. department personnel might provide
employees with or without disabilities an opportunity to reflect upon this new
information. And the H.R. department of businesses might have internal supports
available to their employees as they move through these reflective transitions.
Colearning Experiences at all Levels
Colearning environments equalize power relationships within a business. At first, all
managers within a business reflect upon their observations and listen to all employees
and outside agency supports. After quiet observation, all employees with or without
disabilities, managers, and outside agency supports and share ideas on how to improve
work relationships and company productivity. The managers reframe from staged
sessions. Instead, these sessions occur naturally throughout the workday. Then over time,
a relationship builds between management and employees with or without disabilities
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where all share decision-making. (See below for colearning ideas for businesses).
Coaching
After businesses hire young adults with disabilities, companies could want more
instructions from different coaching sources—a university, vocational rehabilitation
agencies, and other support personnel—occupational, physical, communication, or vision
therapists. These guidelines from various sources would be similar to what an employee
with or without disabilities needs. The coach guides the employer and employees through
disorienting dilemmas by
helping the employees think through their dilemmas by encouraging critical reflection to help identify frames of reference;
using stories or asking for examples from the employees that illustrate how the current predicament is not remarkable and that there is no need to feel isolated;
helping the individual analyze a variety of interpretations and alternative scenarios, the potential roles, and relationships;
assisting the employees to formulate plans to deal with new realities, especially while trying out new responsibilities and building new relationships; and
providing examples of models for functioning within the perspective or provide opportunities for role play (Cox, 2015).
These guidelines fall into no particular order.
Supports & Shares Ideas Shared Decision-making
All company
Staff
Outside Agencies
Employees
Mangers
Outside Agencies
Company staff & outside
agencies
Reflection
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Coaching guidelines for businesses
Mutual Respect for All
Relationships need to be build up over time to achieve trust between the employer,
employees with or without disabilities, and outside agency supports. There also needs to
be a shared focus on ‘working with’ instead of ‘doing for’ (Rutherford et al., 2011). The
companies involved in a business transformation should be willing to take risks and to
push the boundaries of bureaucratic and traditional practices. Business organizations who
participate in social transformation projects demonstrate a sense of innate worth and
dignity of all people.
Myths about Hiring an Individual with a Disability
Some business managers continue to have outdated perceptions about hiring individuals
with disabilities. A study by Kaye et al. (2011) explored why some employers do not
employ individuals with disabilities. These researchers distributed questionnaires to
human resource professionals and managers working at ADA-recalcitrant organizations,
and a total of 463 respondents completed the survey. According to their study data, some
of the respondents did not hire individuals with disabilities because they were concerned
about the
• cost of accommodations;
• lack of awareness as to how to manage workers with disabilities and their accommodation needs; and
Coaching Guidelines
Analyze Alternative Scenarios
Critical Reflection
Formulate New Plans
Using Stories
Provide Examples of
Models
212
• fear of being stuck being stuck with a worker who cannot be disciplined or fired due to fear of a possible lawsuit.
However, 70% of the respondents were concerned about (a) procedures to assess an
applicant’s ability to perform job tasks, (b) the extra supervisory time, (c) the equality of
skills performance to a person without disabilities, and (d) professional limitations on
how to interview an applicant with disabilities.
A more recent literature review done by Vornholt, Uitdewilligen, & Nijhuis (2013)
showed that the acceptance of individuals with disabilities in workplace influenced the
characteristics of the coworkers, of the individuals with disabilities, and of the employer
or organization. Their literature review provided a possible characteristic explanation as
to why 70% of the respondents in the Kaye et al. (2011) study showed concerns about
hiring individuals with disabilities. In fact, Vornholt et al. (2013) literature review
showed how gender, age, and education influenced coworkers’ attitudes toward
individuals with disabilities. For example, co-workers with lower levels of education and
older males were more negative about working with individuals with disabilities. At the
same time, the co-workers who were highly educated and younger females did not exhibit
as much social distance from individuals with disabilities. However, there needs to be
more empirical research in this area to be conclusive. Overall, the competency of the
individual with disabilities and the lack of knowledge about the individuals’ disability
appeared to be a barrier for employment, but there was a positive paradigm shift as
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managers and co-workers became educated through training (Houtenville & Kalargyrou,
2015; Vornholt et al., 2013).
Myth Busters
Researchers have been asking why businesses continue not to hire or start to hire
individuals with disabilities. Erickson et al. (2014) investigated how employers of
companies perceived the hiring individuals with disabilities and whether or not their
policies and procedures were working for these companies. Specifically, these
researchers conducted a survey study in 2011 of employer views on employment barriers
for individuals with disabilities and compared that data to a previous Cornell/SHRM
study completed in 1998. Erickson et al. (2014) reported that:
1. A few companies included individuals with disabilities in their diversity and inclusion plans that required: (a) subcontractors to follow disability
nondiscrimination requirements, (b) relationship development with
community organizations, (c) providing training on disability awareness and
nondiscrimination, (d) a procedure for establishing a grievance for reasonable
accommodations, (e) allowances for enough time left for an extended period,
(f) a specific person or office that desigated accommodations, (g) flexible
work arrangements, and (h) a return to work/disability management program.
2. Fewer employers reported organizational barriers to hiring individuals with disabilities.
3. The cost of accommodations for individuals with disabilities remained a concern for companies.
4. Fewer employers continued to be concerned about attitudes/stereotypes, supervisor knowledge of accommodations, cost of training, or supervision
were a barrier to employment of individuals with disabilities.
5. While the process of experience or training continued to be a high concern for some employers; fewer employers than those 15 years ago saw lack of related
experience or training among individuals with disabilities as an issue.
Is Hiring Individuals with Disabilities Applicable to Different Industries?
Due to the different types of industry, company managers had different concerns about
hiring individuals with disabilities. However, researchers asserted that coworkers and
supervisors who had previously worked and hired individuals with disabilities had fewer
concerns on the job as compared to other workers and supervisors who had not worked
with individuals with disabilities. Houtenville and Kalargyrou (2015) investigated
perspectives of companies in the hospitality industry in comparison with employers of
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other industries about employing individuals with disabilities. These researchers used
data analysis from a 2008 ODEP survey of Employer Perspectives on the Employment of
Young people with disabilities that asked a sample of 3,797 companies about recruiting,
hiring, retention, and advancement issues. Houtenville and Kalargyrou (2015), Domzal,
Houtenville, and Sharma (2008), and Diksa and Roger (1996) confirmed that service-
producing companies would be more likely to hire individuals with disabilities than
goods-producing companies. At the same time, the employers in service-producing
companies such as leisure and hospitality were more likely to identify the customers’
attitudes towards frontline employees with disabilities as a challenge for hiring
individuals with disabilities. In contrast, Kou and Kalargyrou (2014) studied how
customers at a restaurant served by individuals with disabilities perceived their dining
experience.
Businesses considered customer attitudes and workplace accommodations. Each business
type had a different perception. Meinert (2012) showed that 56% of companies end up
paying nothing towards accommodations, and if companies do pay for accommodations,
it is usually a one-time expenditure of US $500. However, not all industries reported the
same perception about the cost of compensation for employees with disabilities. The
construction, manufacturing, transportation, and warehousing industries were most
concerned about workers’ compensation
costs. According to Kalargyrou (2014), a Walgreen’s warehouse supervisor reported that
employees with disabilities had lower injury and turnover rates than other employees
without disabilities. Some researchers and scholars have provided successful examples of
workplace scenarios where a company has hired a person with a disability. I listed a few
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fears and solutions for businesses (Peck and Kirkbride, 2001). The customers showed
moderately active purchase intention for restaurants that employed a significant amount
of service staff with disabilities, but patrons chose this type of dining experience with
family and friends instead of business or romantic occasions.
Fear of Additional Supervision and Loss of Productivity
Companies are concerned about particular attention devoted to persons with disabilities
and about the competitive nature of workplace productivity.
Additional Supervision
A company hired an employee with a developmental disability as a
greeter. The company told the vocation rehabilitation agency that
they would do all the training.
Unfortunately, the company provided minimal training, and the
employee started to be unsuccessful at her job. After meetings with
Vocational Rehabilitation (VR), the company allowed the VR
specialist to provide structured training for the employee with a
developmental disability. Peck and Kirkbride reported that this employee continued to
work for this company for seven years or more.
Productivity of Employee
A company hired an employee with deafness to type for a data entry department. The
employee with deafness productivity standards was the same as other employees without
disabilities. This employee with deafness was not distracted by other workers and
produced better than other employees without deafness.
The Fear of Being Stuck Forever.
Companies want to have the options of hiring qualified employees and of terminating
employees when they are not performing duties of the job.
The Right to Terminate an Employee with Disabilities
An individual with a developmental disability worked in a cafeteria. The employee
worked as a dishwasher and did general cleaning. The employee received job coaching
for two weeks. After the job coach left, the employee had difficulty keeping up with the
job schedule. The employer provided a schedule to assist the employee with knowing
what the duties were of the job. The employee with developmental disability kept up with
the job duties after the employer’s intervention for a couple of months. Unfortunately, the
employee started to show up late for work, and the employer conferenced with the
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employee about arriving on time for work. The employee continued to arrive late for a
couple of months and then was terminated by the employer.
Most individuals with a disability do not want to be marginalized by their employers. If
an employer were to terminate an employee without a disability for the same behavior,
then the employer should do the same for an employee with a disability.
The Fear of Damaged Goods
Companies do not want to be involved with potential risks
where they can lose profitability. The employer needs to
know that the employee will be an asset to their company. As
mentioned earlier, the employee with deafness was an asset to
a data entry business because the employee was not distracted
noise and other employee conversations. Another scenario to
consider would be to hire an individual with developmental
disabilities who has limited reading skills to work in an office
setting to shred highly sensitive documents. Instead of
considering the limitations of an individual with a disability
as damaged goods, companies have an opportunity to provide jobs to individuals with
disabilities because these individuals have assets and abilities that other employees
without disabilities do not possess.
Further Evidence for Hiring Individuals with Disabilities
Youth with disabilities who attend paid on-site workplace experience before they
graduate from high school have a better chance at being employed post-school. Many
corporations are participating in programs to provide paid work internships throughout
the United States. This section will highlight a few of those programs.
Marriott Corporation.
The Marriott Foundation for Young people with disabilities established the program
Bridges in 1989. Bridges have served nearly 20,000 youth with disabilities across these
cities: Atlanta, Chicago, Dallas, Washington, DC, Los Angeles, New Orleans,
Philadelphia, Oakland, and San Francisco (Simonsen, Fabian, & Luecking, 2015). Each
state has different funding models that combine local, state, federal, and private funding.
The Bridges program implements standardized interventions with a national office. The
Marriott Corporation provided the staff oversight, mandatory training to human resources
and managers, supervisory guidance, and policies and procedures for the program and
staff performance. Bridges accept approximately 20 students into each of their designated
city programs. Each student is tracked within a data management system after completing
the two-year Bridges program (Simonsen et al., 2015).
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Benefits discovered by corporations. The Marriott Corporation found that the
turn-over rate had dropped from 50% to 32% after they started to hire adults with
disabilities. Walmart experienced a similar low turn-over rate and a lower rate of injuries
(Houtenville & Kalargyrou, 2015). Another corporation, Walgreens, has employees with
disabilities and employees without disability work alongside each other and receive the
same pay scale. Forty percent of the Walgreens workforce were young people with
disabilities. Walgreens even adapted the South Carolina factory to make it more
handicapped accessible, which has benefited both employees with or without disabilities
(NDRN, 2012). Some of the Walgreens’ adaptations at their South Carolina plant were
adjustable workstations and clear icon-driven touch screen computers. They also created
picture signs that showed individuals with physical, cognitive, intellectual, and mental
disabilities how to perform various jobs. Walgreens did not keep their diversity in the
workplace a secret from other companies. Instead, Walgreens shared their program
processes with other retailers (NDRN, 2012).
Social Enterprise Business. Social enterprises are non-profit organizations that
can be used to increase employment opportunities for young people with disabilities. The
main goal of a social enterprise is to maintain profitability and have a social impact. The
nonprofit board of directors governed these social enterprises. I will provide a brief
overview of two social enterprises: Hudson Community
Enterprises (HCE) and the Center for Head Injury
Services (CHIS). Katz (2014), the author of this article on
CHIS, worked for the Kessler Foundation. The Kessler
Foundation invested $487,700 in seed funding to HCE
and provided an additional no-interest loan of $250.000.
Hudson Community Enterprises. HCE in Jersey City,
New Jersey, operates a group of social enterprises that
contracts out to other businesses and performs the
following jobs: (a) digital mail management, (b) document imaging, and (c) document
shredding. In 1957, HCE started out as an organization
that focused on job preparation and retention services
for individuals with disabilities. In 2004, HCE changed
their business model focus to an organization that
developed social enterprises that created jobs for
individuals with disabilities (Katz, 2014). HCE
started up a shredding company, Metro Shredding
because a shredding company had marketplace
potential and employment for a large number of young
people with disabilities. As the shredding business
grew, HCE’s customers began to request services for
scanning documents. In the year 2005, HCE launched
two companies, Metro Shredding and Metro
Scanning. The Metro Scanning company required its
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employees to have graduated from a nine-week document imaging specialist training;
such training required a seventh-grade reading level and a satisfactory job performance.
In 2008, HCE launched another social enterprise called Metro Digital Mail Management
(MDMM). The MDMM company used high-speed scanners to open envelopes, capture
images, classify data and store contents on a secure portal. Due to market demand,
MDMM expanded their social enterprise business by adding a microfiche laboratory in
2012. Eighty-one percent of HCE’s workforce are individuals with disabilities. The
entry-level pay is between $8.50 to $10.50 per hour with productivity incentives that can
raise the wage to $14.00 per hour. Full-time employees received full benefits, and part-
time employees received state-mandated benefits. In 2013, HCE grossed $4.3 million and
was able to account for 32% of overall income which means that HCE is financially self-
sustaining.
The Center for Head Injury Services (CHIS). The CHIS is located in St. Louis,
MO. CHIS provided vocational placement for individuals with head injuries and other
neurological impairments. The U.S. economic downturn caused CHIS to diversify
occupational services into the culinary field. Destination Desserts (DD) employees with
head injuries and other neurological impairments baked cookies and delivered them hot
and fresh as a nightly snack to the college students. The job skills for a bakery required
mixing, baking, ordering, shipping, and cashiering skills, which allowed DD to
accommodate different skill levels.
In 2012, DD received a planning grant from Kessler Foundation for $50,000. DD started
to sell cookies, cupcakes, and brownies from a food truck at events and office parks
throughout St. Louis and discontinued product delivery. During the test phase of the DD
business, the company grossed $30,000 in revenue. Kessler Foundation rewarded the
Destination Desserts’ success with a $500,000 grant. With this grant, DD purchased and
renovated a 14-foot box truck to CHIS’s specifications. They opened their mobile bakery
business in May of 2013. The DD bakery served fruit smoothies, coffee, latte, cupcakes,
breakfast pastries, and cookies.
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DD trained all employees in food handling and safety, essential recipe production, and
product finishing. The employees rotate between the following workstations: measuring,
mixing, baking, glazing, decorating, packaging, cleanup, and sanitation. Each employee
learns customer service skills by working directly with the public as trainees on the food
truck. The employees earned an entry-level pay of $7.35 per hour. As of 2013
Destination Desserts was financially self-sustaining because DD projected to gross
$100,000, and their net revenue was projected to be $30,000.
Utah Resources for Competitive Workplaces for Individuals with Disabilities
Utah has the lowest number of young people with disabilities unemployed.
Comparatively, West Virginia has the highest number of young people with disabilities
unemployed. The state of West Virginia has an unemployment rate of 19.5% for young
people with disabilities whereas the state of Utah has an unemployment rate of 9.9% for
young people with disabilities (Kraus, 2017). In Utah, 40.8% of young people with
disabilities worked with other individuals with disabilities, and 77.1% of young people
with disabilities worked with individuals without disabilities (Erickson, Lee, & von
Schrader, 2016). These positive statistics did not occur overnight. Community members
in Utah advocated for government programs and businesses to establish a diversified
workforce that included young people with disabilities.
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Utah’s Model Employer Government Activities
In 2007, former Governor Jon
Huntsman issued an Executive
Order, Designating the Intent of
Utah State Government to Be
the Model Employer for People
with Disabilities (EO 2007-
0013, 2007). The EO 2007-0013
required that the Utah
Department of Human
Resources (UDHR) to do more,
and they (a) conducted an
outreach campaign for young
people with disabilities, (b)
surveyed hard-to-fill positions,
(c) recruited young people with
disabilities to fill these areas,
and (d) created a task force to explore additional strategies to increase the employment of
young people with disabilities within state government. To expedite the former Governor
Jon Huntsman’s EO 2007-0013, Governor Gary R. Herbert signed House Bill 17 which
established the Alternative State Application Process (ASAP). Under the direction of the
UDHR, the bill required the agency to establish rules and policies for the facilitating of
the executive branch agencies to identify qualified candidates with disabilities (House
Bill 17, 2012). Governor Herbert did not sign the H.B 17 until 2012 because the H.B. 17
went through legislature review. The program, ASAP actually started-up in 2011. The
ASAP program provided opportunities for qualified candidates with disabilities to fill
vacant positions for a six-month trial examination period. When the examination period
finished, then the worker with disabilities was placed in the position and provided with
the state’s customary probation period.
Utah businesses are opening doors for work. Many Utah businesses modeled
recruiting, hiring, accommodating, and advancing young people with disabilities. Some
of these businesses participated in the Think Beyond the Label campaign to promote
hiring and retaining of employees with disabilities. Some of the Utah businesses that are
part of the Think Beyond the Label are Goldman Sachs, Salt Lake City, Utah World
Trade Center, UPS, Utah State Office of Rehabilitation, Work Ability, and the Salt Lake
Chamber-Utah Business Employer Team (Website Utah.gov Services, 2010) (See table
on page 222). Recently, a Howdy Homemade Ice Cream opened to employ adults with
disabilities.
Howdy homemade ice cream. On September 2, 2017, the Nielson family opened
a franchise that employs adults with special needs. Chris Nielson, the father of a young
adult son with a disability and a general contractor by trade, reached out to Tom Landis,
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the owner of an ice cream restaurant in Dallas, Texas, who employed adults with
disabilities. Tom Landis, the owner of the franchise Howdy Homemade, shared how the
restaurant business has “quick turnover and low employee morale” (Wilde, 2017, p. C1).
Tom Landis also explained that business could not be primarily about the “feel good
aspects” because “there are people out there who believe a business that mostly employs
adults with disabilities is unachievable. Instead, the employees and I at Howdy
Homemade have to do better” (Fox News, July 2016). Chris Nielson added,
Our main goal and hope are that people recognize exactly what our employees
can do instead of what they can’t do. I think when a disability or a special need
comes up, often our mind starts running on to what are the limitations or the
disabilities instead of thinking about (how) someone with ASD, they have great
retention skills, and someone with Down syndrome, they’re just naturally the
happiest and loving people that you come across (Wilde, 2017, p C1).
Therefore, individuals with disabilities can perform just as well as individuals without
disabilities in the workplace when introduced to tasks that highlight their strengths.
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Resources for Businesses Owners Who Are Open to Hiring Individuals with
Disabilities
Organization
Description
Contact information
Think Beyond the Label
Promotes hiring and training of
young people with disabilities
801-887-9388 or at
Disability Friendly
Business
A business completes accessibility
assessment and commits to training
employees
Local Chamber of
Commerce or
Governor’s Committee
on Employment of
Young people with
disabilities at 801-887-
9392
Utah’s Business
Relations Team
Provides consultation, training to
businesses at no cost
PWDNET Business
Relations Team at (801)
887-9538 or at
The Utah Targeted Tax
Credit – TC-40
Given to a business that hires
individuals with severe disabilities
801- 538-4498 or at
SSDI Work Incentives
Special rules make it possible for
young people with disabilities
receiving SSDI or SSI to work and
still receive a monthly payment.
Different rules apply to each
program.
1-800 -772-1213 or at
https://www.ssa.gov/ssi/
text-work-ussi.htm
Note: SSDI provides benefits to individuals with disabilities who are insured by worker
contributions to the Social Security trust fund. SSI program makes cash assistance
payments to individuals who are aged, blind or have a disability. The program is based on
family need and considers both income and resources.
223
Summary of Unrealistic Perception of Individuals with Disabilities
Many businesses hire individuals with disabilities. In fact, some of these businesses are
huge companies who have a CEO committed to accepting and implementing work
programs for individuals with disabilities. Some of these companies are Ford Motor
Company, IBM, Microsoft, SunTrust Bank, AT & T, Boeing, Wells Fargo, Johnson &
Johnson, Federal Express, Proctor & Gamble, Honeywell, and Caterpillar. To these
companies, young people with disabilities are productive and contribute to the success of
the company. The public continues to remain unconvinced. Green and Brooke (2001)
stated that negative stereotypes by the media had created an unrealistic perception of
young people with disabilities. In the past, the media portrayed workers with disabilities
as less productive than coworkers. The media also showed workers with disabilities as
needing a different set of work standards, which cost the company large sums of money
(Green & Brooke, 2001). Meanwhile, company leaders who have hired individuals with
disabilities have realized that such a decision benefited their community and at the same
time have met their business needs.
Conclusion
The myths about hiring individuals with disabilities created obstacles for diversity in the
workplace. Some business changed their company culture to include diversity. These
businesses find opportunities within their company where employees with disabilities
perform jobs that highlight their strengths. Furthermore, the history of legislation and
statues in support of individuals with disabilities working in competitive workplaces
showed how state funding and economics could adversely or inversely affect the ability
for businesses to employ individuals with disabilities. The learning foundations
illustrated by these conceptual frameworks—transformation theory, colearning, coaching,
and mutual respect—also guided employees with or without disabilities as businesses
transform into a more diversified workplace. In Utah, businesses continue to organize
competitive workplace employment more than sheltered workshop employment for
individuals with disabilities. Also, businesses that hire individuals with disabilities
provide management and employer support. In fact, the companies that hire individuals
with disabilities advocate for all their employees. These businesses share models on how
to diversify the workplace and make accommodations for all employees with other
businesses.
224
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Appendix B: Semistructured Interview Questions
Teaching Methodologies, Pedagogy, and Work Experience
1. What do you think your son/daughter learned from their special education both at school and in a transition program and after they aged-out of a transition program?
2. Did there seem to be different types of teaching philosophies from high school to
transition and post-transition to aging out of a transition program?
3. Do you think work experiences helped you son/daughter find employment during and
after post-transition programs?
4. What type of work experience did they have?
5. Why were these experiences important?
Teachers have Limited Knowledge of Resources
6. Do you think teachers know how to locate resources in the community? Can you give a couple of examples?
Demographic Variables (gender, race/ethnicity, disability)
7. I have a few census type questions. Is your young adult son/daughter a female or
male?
8. What is your race/ethnicity?
9. What classification did the IEP teams or disability services make?
Self-Determination, Communication, and Self-Care
10. Do you think communication skills and self-care skills have impacted your
son/daughter?
11. How have these skills impacted their lives?
12. Does your son/daughter have adequate self-determination skills and if so what types
of skills do they have?
Family Expectations and Monetary Resources
13. What expectations did you have about school programs, transition programs, and
aging out programs?
14. Did any of these programs meet your expectations?
15. If yes or no, explain why or why not they did not meet your expectations?
16. Did you expect more or less monetary support from agencies or non-profit
organizations and why?
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Lack of Understanding of How Transition Services implementation occurs
(sheltered/non-sheltered workshops, student-focused planning)
17. Describe the type of program(s) or employment (without saying where/who) that your son/daughter participate in or work at in the community? Include any high school
program.
18. How long has he/she worked at these facilities?
Parents as Primary Advocates
19. Do you consider yourself an advocate for your child?
20. Please describe what being an advocate is to you? Without saying specifics (name,
address, persons involved), describe some of your advocacy experiences
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Appendix C: Dependability Strategy
To promote trustworthiness, I evaluated the effectiveness of the interview process
after each interview by using a dependability strategy that was suggested by Hollway and
Jefferson (2000):
1. What did I notice? I will implement this question by constantly searching for discrepancies in data collection and data analysis. Thus, I will not ignore relevant
points of view.
2. Why did I notice what I noticed? When I ask myself this question, I will be reflecting upon what I will be observing and hearing. I will use this strategy to
think critically.
3. How can I interpret what I noticed? I will accomplish this reflection by spending appropriate amounts of time with participants to build rapport and trust.
4. How can I know that my interpretation is the "right" one? I will know my interpretation is correct by analyzing participant responses from the conceptual
framework of CDT, reflecting upon their responses, and acknowledging
limitations in the study.
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