Eliminating Health Care Disparities

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Journal of Gerontological Social Work

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Growing Health Disparities for Persons Who Are Aging With Intellectual and Developmental Disabilities: The Social Work Linchpin

Laura M. Robinson , Jason Dauenhauer , Kathleen M. Bishop & JoAnne Baxter

To cite this article: Laura M. Robinson , Jason Dauenhauer , Kathleen M. Bishop & JoAnne Baxter (2012) Growing Health Disparities for Persons Who Are Aging With Intellectual and Developmental Disabilities: The Social Work Linchpin, Journal of Gerontological Social Work, 55:2, 175-190, DOI: 10.1080/01634372.2011.644030

To link to this article: https://doi.org/10.1080/01634372.2011.644030

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Journal of Gerontological Social Work, 55:175–190, 2012 Copyright © Taylor & Francis Group, LLC ISSN: 0163-4372 print/1540-4048 online DOI: 10.1080/01634372.2011.644030

Growing Health Disparities for Persons Who Are Aging With Intellectual and

Developmental Disabilities: The Social Work Linchpin

LAURA M. ROBINSON Department of Pediatrics, University of Rochester Medical Center, Rochester, NY, USA

JASON DAUENHAUER Department of Social Work, College at Brockport, State University of New York, Brockport, NY,

USA

KATHLEEN M. BISHOP Department of Pediatrics, University of Rochester Medical Center, Rochester, NY, USA

JOANNE BAXTER Easter Seals New York, Rochester, NY, USA

Similar to the general population, adults with intellectual and developmental disabilities (IDD) are living into their 70s and beyond. Health care disparities have been well-documented for this vulnerable and underserved population. Social workers are often responsible for assessment, coordination of care, and negotiation of needed services for people with IDD. This article explores the challenges facing social workers in meeting the growing health and social needs of aging adults with IDD and their families. Trends in

Received 31 May 2011; accepted 21 November 2011. Ms. Robinson’s, Dr. Bishop’s, and Dr. Dauenhauer’s efforts were supported by funds

from the Bureau of Health Professions (BHPr), Health Resources and Services Administration (HRSA), Department of Health and Human Services (DHHS) under Geriatric Education Centers Grant #D31HP08811. This information or content and conclusions are those of the authors/speakers and should not be construed as the official position or policy of, nor should any endorsements be inferred by the BHPr, HRSA, DHHS or the US Government. Ms. Robinson’s and Dr. Bishop’s efforts were also supported by UCEDD Grant #90DD066102 from the US Department of Health and Human Services, Administration on Developmental Disabilities to the University of Rochester.

Address correspondence to Laura M. Robinson, M.P.H., Program in Aging and Developmental Disabilities, University of Rochester Medical Center, 601 Elmwood Avenue, Box 671, Rochester, NY 14642, USA. E-mail: [email protected]

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social work practice and gaps in education are discussed as they relate to addressing and reducing current health disparities.

KEYWORDS social work, aging, intellectual disability

INTRODUCTION

Over 640,000 adults with intellectual and developmental disabilities (IDD) over the age of 60 were identified in the United States in 2000; this number is expected to double by 2030 (Heller, Janicki, Hammel, & Factor, 2002). The increase in life expectancy can be attributed to improved medical knowledge, access to health care, deinstitutionalization, and better living conditions (Heller et al., 2002), and can be expected to continue.

Increased longevity has presented challenges for service providers who work with people with IDD and their families. Health care practitioners and community services providers often do not have sufficient knowledge and skills to provide appropriate interventions for this unique aging popula- tion due to lack of awareness, research, and formal education within health professions training programs (Ansello, 1992; Fenton, Hood, Holder, May, & Mouradian, 2003; Horwitz, Kerker, Owens, & Zigler, 2001; U.S. Public Health Service, 2001; Wolff, Waldman, Milano, & Perlman, 2004).

Social workers play an important role in meeting the needs of those who are aging with IDD. Specifically, social workers provide assessment, intervention, and advocacy for people with IDD and their families. Although these basic skills are taught within both undergraduate and graduate social work programs, formal education specifically targeting the unique needs of people who are aging with IDD is limited. Therefore, finding social workers adept, or even familiar, in aging and IDD is rare. Thus, the purpose of this article is to bring attention to the limited presence of social workers in the IDD field, the lack of educational opportunities to support the current and future social workers in this field, and the impact of these trends on health disparities experienced by people who are aging with IDD.

IDD, AGING, & HEALTH DISPARITIES

The Centers for Disease Control and Prevention (CDC) defines developmen- tal disabilities (DD) as a diverse group of severe chronic conditions that affects one or more major life activities, such as learning and mobility, as well as independent living. The term intellectual disability (ID) falls under the umbrella definition of a developmental disability and is used interna- tionally to reference a significant cognitive impairment expected to last a lifetime (CDC, 2011).

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Based on US Census data from July 2008, it is estimated that adults over age 65 will grow to 20% of the population (71 million) by 2030 (US Census Bureau, 2011). Of people over age 65, 42% of the civilian, noninstitu- tionalized population has a disability (physical, cognitive or emotional) that impacts the ability to function at home or work (US Census Bureau, 2011). Unfortunately, national health surveillance data in the US for people with IDD are lacking (CDC/National Center on Birth Defects and Developmental Disabilities, 2009; Healthy People, 2010; US Department of Health and Human Services [USDHHS], 2005; US Public Health Service, 2001). Data collection for children with DD is inconsistent throughout the states with different collection processes and even different criteria for diagnosis. After school age and transition to adulthood, the collection of data is even more challenging with little or no information on adults who are not part of for- mal service systems (Shannon & Agorastou, 2006). Social workers are a bridge between people and services. Without this information, it is difficult to determine how many people have a diagnosed IDD, how many are over age 65, what their health needs will be across the lifespan, and what impact their lifelong disabilities and chronic conditions will have on the US health care system, in particular Medicaid and Medicare spending. Understanding the demographics of the community and different subpopulations will assist social workers in advocating for needed services.

Genetics, attitude, environment, lifestyle, and the interaction of preexist- ing lifelong disabilities affect a person’s overall aging experience (Machemer, 1994). Adults with IDD follow similar aging patterns as the general pop- ulation, however with increased severity of a disability, a shortening of life expectancy and/or reduction of quality of life are more likely (Heller, Caldwell, & Factor, 2007). As they age, people with IDD are more likely than the general population to experience cardiovascular disease, sen- sory decline, functional decline, and increasing dependence on paid and unpaid caregivers (Cooper, 1997; Evenhuis, Henderson, Beange, Lennox, & Chicoine, 2000; Haveman et al., 2011; Janicki et al., 2002; Robinson et al., 2010; van Schrojenstein Lantman-de Valk, Metsemakers, Haveman, & Crebolder, 2000). The most common conditions experienced by people with IDD are vision and hearing loss, musculoskeletal decline (e.g., osteoporosis, osteoarthritis), gastro-intestinal conditions (e.g., constipation, reflux), and hypertension. Factors contributing to these health issues include poor diets, decreased physical activities and/or exercise routines, and side effects from medications (Heller, McCubbin, Drum, & Peterson, 2011). People with dis- abilities in the general population are more likely to report poor health status than people without disabilities (Healthy People, 2010; Morbidity and Mortality Weekly Report [MMWR], 2008). In conjunction with a lifelong dis- ability, any additional health conditions significantly compromise the overall health and functional status of aging adults with IDD (Henderson et al., 2009).

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Diagnostic overshadowing is a term utilized when psychosocial or other health problems are not diagnosed due to a primary diagnosis of IDD (Fisher, 2004; Jones, Howard, & Thornicroft, 2008; Jopp & Keys, 2001; Reiss, Levitan, & Szyszko, 1982). Adults with IDD are known to have a higher risk for a co-occurring mental illness, thus increasing the need for advocacy, ser- vices, and supports that can be provided by a social worker (Chaplin, 2004). The challenges of identifying and diagnosing a coexisting mental illness in the IDD population include the difficulty in distinguishing depression from physical illness or dementia, use of appropriate screening tools, commu- nication challenges, differences in symptom presentation, and determining which of the available services would best meet the needs of the individual with a dual diagnosis (Bourus, 1999). Diagnostic overshadowing is a com- mon problem in the IDD field and one that social workers can advocate to prevent.

Medicaid is the primary form of health care insurance for adults with IDD (Bachman, Tobias, Master, Scavron, & Tierney, 2008; Drainoni et al., 2006; Havercamp, Scandlin, & Roth, 2004). Many health care providers either do not accept Medicaid insurance or limit the number of patients in their practices with Medicaid (Havercamp et al., 2004; Reichard, Sacco, & Turnbull, 2004). As a result, anecdotal evidence suggests that individuals with IDD often access care in clinic settings with long waits for appoint- ments, see newly trained health care providers with limited experience and exposure to people with IDD, and have limited access to after-hours services (Agency for Healthcare Research and Quality, 2011). A lack of sensitivity/experience with this population may result in negative attitudes toward people with IDD from health care professionals who may struggle with communicating at appropriate developmental levels (Ward, Nichols, & Freedman, 2010).

Studies also indicate that adults with IDD are less likely to receive qual- ity preventive health care (Kerr, Richards, & Glover, 1996; Lewis, Lewis, Leake, King, & Lindemann, 2002). Studies by Horwitz, Kerker, Owens, and Zigler (2000) and Lewis et al. (2002) identified limitations in spe- cialty services including mental health care, ophthalmological care, dental services, and preventive screenings for cancer. In another study utilizing focus groups with parents/guardians, self advocates, and community sup- port professionals, health care disparities in four areas were identified: access, knowledge, communication and quality (Ward et. al., 2010). Ward and colleagues (2010) stated that the limited amount of training available and utilized by health care professionals perpetuates these disparities, and thus continues to negatively impact the health of individuals with IDD. Social workers, often as part of an interdisciplinary team, must also receive edu- cation and training on the specific health needs of the IDD population to support their role as the coordinator of appropriate health services.

Similar to general population trends, family members provide a major- ity of informal long-term caregiving for aging adults with IDD (Family

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Caregiver Alliance, 2006; Thompson, 2004) in a home setting. Due to their own advancing age and lack of supportive resources, family caregivers of adults aging with IDD have significant health and social needs (Heller et al., 2007). As these caregivers age, or are no longer able to care for their adult child with IDD, planning for the future is critical (e.g., hous- ing, financial, and related supports). Limited long-term support is evidenced by waiting lists for residential or congregate care settings, which exist in most states (Heller et al., 2002; Lakin, 1998). As the health care needs surpass those that can be addressed at home, competition for placements in long-term care facilities are expected to increase as both adults with IDD and adults without IDD continue to live longer (Parish & Lutwick, 2005). The numbers of older adults that will need services will be at an unprecedented high, thus competition for staff, residential facilities, pro- grams, and other support services may limit what is available and who will have access to these resources. Additional factors that will impact the qual- ity of care for people with IDD include low wages for direct support staff, high turnover rates, and lack of training on aging issues (Larson, Lakin, & Bruininks, 1998; Mitchell & Braddock, 1994; Shakespeare, Iezzoni, & Groce, 2009).

Thus, access to health care for people with IDD that includes regu- larly scheduled preventive services (e.g. mammograms, FOBT); meaningful interaction with informed practitioners; and sufficient time for the discussion of current symptoms, concerns, and/or management of chronic conditions (other than the developmental disability) that is supported by a familiar fam- ily member or staff person would likely begin to close the gap that exists in the health status of adults with IDD compared to the general population. It is clear that health disparities for people with IDD are significant and will continue to grow unless these trends are addressed. Social work has a tra- dition of helping to meet the needs of this population and can be integral to bridging solutions. The following section provides an overview of current social work practice and recent changes that are impacting service coordi- nation in our home state of New York. New York State (NYS) is one of 48 states and DC that operate Home and Community-Based Services (HCBS) Medicaid Waivers to support services to people with IDD (Kaiser, 2011). NYS has one of the highest HCBS expenditures per person in the coun- try, demonstrating a significant need for services (Kaiser, 2011). Despite this high rate of spending for services, social workers are not integral to service delivery in NYS.

CURRENT SOCIAL WORK PRACTICE

Social work is a discipline based upon a strengths-based model of assess- ment and intervention. According to this model, all individuals have the capacity for growth and change (Saleeby, 1996). Social workers use their

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skills to assist disadvantaged populations in achieving social justice within a variety of interconnected systems. A person is understood within the con- text of his or her environment. As articulated by Russo-Gleicher (2008, p. 131), the values of social work and the field of IDD coincide with one another: “Social workers value rights, dignity, individual uniqueness, self-determination, and client access to resources (National Association of Social Workers, 1999). The field of DD values independence, inclusion, individualization, and productivity (Aventi & Otis, 1994).”

People with IDD and their families are served by social work providers in traditional DD service delivery systems and in social service agencies (Parish & Lutwick, 2005). Social workers are most often responsible for assessment and coordination of care and negotiation of needed services for this population. Care coordination often includes linking families to needed services including housing, health, transportation, education, recreation, and day service programs. Social workers also provide counseling and advocate for needed services and social/public policies that affect individuals with IDD and their caregivers (Heller, et al., 2007; Parish & Lutwick, 2005).

In NYS, Medicaid Service Coordinators (MSCs) are the social work- ers for people with IDD enrolled in the New York State Office for People With Developmental Disabilities (NYSOPWDD) system. The role of the MSC includes the provision of assessment, care planning, linkage and referral, monitoring and follow up, and service documentation (NYSOPWDD, 2011). These basic services are in line with the core social work skills. MSCs do not need to have a bachelor’s degree in social work however, and expe- rience working with people with IDD is either minimal or not required (NYSOPWDD, 2011).

Requirements for MSC caseload size and the minimum number of face- to-face contacts have changed effective October 1, 2010. These changes increase the maximum caseload from 25 units to 40 units. There is a weighting factor of 0.8 units for each individual with IDD that resides in a residential program, thus the number of people on an MSC caseload could exceed 40. Monthly face-to-face contacts with individuals with IDD had been a requirement, and this service has changed to a minimum of 3 contacts per year. An MSC is expected to provide services as needed and may have more frequent contact if needed (NYSOPWDD, 2011). These minimum standards for MSCs that include limited or no work experience with IDD, low edu- cation requirements, higher caseloads, and decreased required face-to-face contacts, could have a negative impact on the amount, type, and quality of services people with IDD receive over their lifetime.

At a time when people with IDD, especially those who are aging, will be requiring more time and expertise of the social work profession, these systemic changes signal that service provision is going in the opposite direc- tion that is needed to decrease the impact of health disparities and improve care to meet needs of this very vulnerable population.

Health Disparities, IDD, and Social Work 181

SOCIAL WORK EDUCATION AND IDD

Increased education of future and current social work practitioners is essen- tial to addressing the needs of individuals aging with IDD, their families, and systems of care. This section describes both formal and continuing social work education as it relates to IDD and the goal of eliminating health disparities.

Formal Education

Over the past 15 years, significant progress has been made to infuse gerontological content and foster gero-competencies within social work curricula (Dauenhauer, Steitz, Aponte, & Fromm Faria, 2010; Ericson & Tompkins, 2006; Fromm Faria, Dauenhauer, & Steitz, 2010; Scharlach, Damron-Rodriguez, Robinson, & Feldman, 2000), but aging with IDD has received little curricular attention. It is argued that practitioners are often exposed to this group’s specialized needs in a direct practice situation without any previous education (Kropf, 1996; Russo-Gleicher, 2007). Thus, schools of social work have a responsibility to prepare future practitioners with the skills necessary to meet the needs of this growing population.

Several studies report that schools of social work are not preparing students for practice in the IDD field (DePoy & Miller, 1996; Kropf, 1996; Russo-Gleicher, 2007). The most recent study by Laws, Parish, Scheyett, and Egan (2010) reviewed online curricular documentation of the 50 top-ranked schools of social work, as indicated by US News and World Report. Schools included BSW, MSW, and doctoral programs. Findings revealed that 18% (n = 9) of schools offered courses on IDD, and 6% (n = 3) offered concen- trations in IDD. One surprising outcome was the fact that 58% (n = 28) had one or more tenure-track faculty members with research experience in IDD. The authors describe how this finding indicates schools have the capacity to offer more education in this area, but are not doing so.

This paucity of DD courses translates to lack of exposure for students, which, in turn, detracts from the adequacy of the training and education provided to those students and reduces the quality of services provided to people with DD. Furthermore, this lack of exposure to the DD field minimizes the potential for students to discover a field of service that sorely needs to expand and strengthen its workforce. (Laws et al., 2010, p. 327)

Continuing Education

In the 1960s, University Centers for Excellence in Developmental Disabilities, or UCEDDs (formerly University Affiliated Programs), were created through

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legislation with the intent of educating community-based health care clini- cians and service providers on IDD. Although most programs were founded within pediatric departments, the need for a lifespan approach to education and training has become obvious. Continuing education for social workers and other clinicians in the field of DD on aging was not easily available in the 1980s once the deinstitutionalization movement placed people with IDD back in communities. One example of addressing this need in NYS was the creation of the Program in Aging and Developmental Disabilities (PADD) at the University of Rochester Strong Center for Developmental Disabilities, one of three UCEDDs in NYS, in 1986. PADD was designed to provide pre- and postservice training to interdisciplinary teams (including social work), develop curricula for agency training, and provide supplemental resources to enhance service delivery (e.g., statewide conferences, videos). PADD has also collaborated on research related to health status and health trajectories of adults with IDD who are aging (Davidson et al., 2008; Henderson et al., 2008; Janicki et al., 2002; Robinson et al., 2010) to inform not only the med- ical field but the staff, caregivers, and social workers who provide direct services on a regular basis. In partnership with the Department of Social Work at SUNY Brockport, PADD was part of a Developmental Disabilities Certificate Program offered at SUNY Brockport in the early 1990s. However, the program was discontinued due to low enrollment.

In the late 1990s, PADD partnered with the Finger Lakes Geriatric Education Center (FLGEC), one of 50 geriatric education centers (GEC) in the United States funded by the Health Resources and Services Administration. The project included (a) rotating medical school Residents and Fellows through geriatric assessment clinics for people with IDD; (b) Grand Rounds presentations on IDD for current geriatricians and other health care practi- tioners; and (c) training for nurses, clinicians, direct-care staff, caregivers, and administrators of community agencies on aging with IDD, differen- tial diagnosis, and environmental modifications. The FLGEC component on geriatric education/training in IDD was highly successful over the last two funding cycles. Although not social work specific in terms of its educational target audience, the FLGEC initiatives attract a significant percentage of social work providers from the across the region. At this time, the FLGEC is the only funded GEC with an IDD focus, an indication of the continuing need for more resources on aging with IDD.

The previous two examples underscore the limited opportunities for future and current social work practitioners to acquire the skills and knowl- edge to address the growing needs of the IDD population in NYS. In the section to follow, key areas are outlined for which social workers are well-positioned to address in conjunction with IDD-specific education and training.

Health Disparities, IDD, and Social Work 183

THE SOCIAL WORKER’S ROLE IN MEETING GROWING NEEDS

In addition to limited educational opportunities, there are currently no requirements in NYS for social workers to complete continuing education units to maintain certification or licensure. The absence of an ongoing edu- cational requirement places additional responsibility on the social worker; the social worker must take the initiative to research new populations and identify local demographic trends to maintain a knowledge base that is rel- evant to practice. There are several major areas in which social workers could assist older individuals with IDD, as well as their caregivers. These areas are described in the following paragraphs, with suggestions for social work practice.

Health Care Advocacy

Given the access and health care disparities previously described, social workers play an important role at local and systemic levels in the reduction and elimination of these inequalities. Some areas in which social workers can have a significant impact include (a) educating family caregivers to become informed consumers of health care, advocates for health screenings, and good observers/reporters of functional changes over time; (b) training health care providers to enhance their understanding of the physical and psychosocial needs of people with IDD; and (c) facilitating communication between health care providers and people with IDD. In particular, social workers may collaborate with primary care physicians, nutritionists, physical therapists, and caregivers to develop strategies to assist with healthy lifestyle changes for individuals with IDD (Sohler, Lubetkin, Levy, Soghomonian, & Rimmerman, 2009) as overweight and obesity status are highly prevalent, as well as increasing comorbidities with age (Robinson et al., 2010).

Care Coordination

As the lifespan of people with IDD continues to increase, more commu- nity services will be utilized such as senior day programs, nursing homes, and other long-term facilities that were designed for the general popula- tion. The consumption of health care resources will also increase as older adults with IDD manage their lifelong chronic conditions, in addition to age-related chronic conditions. Social workers can play a key role in train- ing family caregivers, direct care staff, and administrators in appropriate and comprehensive assessments, as well as inclusive service provision to older adults with IDD. Social workers can also develop coalitions of providers

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to enhance communication across service systems (Parish & Lutwick, 2005) and between specialty health care providers (Coughey et al., 2010). These two traditional roles of social workers (training and advocacy) could con- tribute to the reduction in health disparities experienced by older adults with IDD.

End-of-Life Issues

As people with IDD are living longer, they will be experiencing end-of-life issues as family members, friends, staff members, and other caregivers die. They will also be faced with their own journey toward the end of life. Social workers can tailor education, assessment, and intervention regarding aging, grief counseling, bereavement services, and support groups to help individ- uals with IDD cope with grief and loss issues (Bostford, 2000). Advanced directives including health care proxies, Do Not Resuscitate orders, and burial preferences should be discussed with family and the individual with IDD (to the extent possible; Botsford, 2000). Social workers can promote and assist with such planning and take on a leadership role to ensure that obstacles to end-of-life care are addressed and supportive planning and interventions are provided. Last, social workers will be able to assist families with access- ing services at various entitlement and community service agencies to help develop comprehensive future care planning that meets the needs of the individual with IDD as well as the aging caregiver.

Educational Needs

Advocates have recommended several ways to improve educational oppor- tunities provided by social work educators. First, undergraduate and graduate programs need to provide coursework that includes IDD content (Kropf, 1996; Laws et. al., 2010; Russo-Gleicher, 2007). Because many stu- dents may not have the opportunity to complete an elective course, infusion of IDD content into foundation courses such as diversity, human behavior in the social environment, policy, and others is highly suggested. Models that utilize an ecological perspective as proposed by Kropf (1996) call for integrative infusion methods that do not require faculty expertise with IDD. She provides ideas for using case studies, supplemental readings, and assignments that would give students exposure to this population.

Russo-Gleicher (2007) emphasizes the necessity for IDD content in human behavior courses where the life course perspective can be used to highlight service needs at various life stages. Policy and practice courses are also areas where IDD-specific knowledge and skills need be taught to both undergraduate and graduate students. Ideally, social workers would be included in the development of health and education programs as well

Health Disparities, IDD, and Social Work 185

as the creation and evaluation of evidence-based interventions that can be offered through an internship or practicum. Beyond coursework, Laws and colleagues (2010) encouraged social work educators to partner with IDD service providers and UCEDDs to help identify social work-related training needs. These partnerships may lead to field practicum sites and opportuni- ties for collaborative research further enhancing student opportunities with this population.

Research Needs

Current research in medical homes and care coordination models focus on children with chronic conditions and/or special health care needs (Coughey et al., 2010). These models could be expanded to include older adults with IDD whose comorbidities increase with age (Haveman et al., 2011; Robinson et al., 2010). Although nurses are the primary coordinator in most care coor- dination and medical home models (Boyd et al., 2009; Chiverton, Lindley, Tortoretti, & Plum, 2007; Wegner et al., 2008), the expertise of social work- ers in connecting, referring, and maintaining relationships could easily be applied to a model with older adults with IDD. Coughey and colleagues (2010) provided evidence that a medical home/care coordination model can be successful when staff members other than nurses are responsible for coordination. More research needs to be done to provide evidence-based support of the creation of medical homes coordinated by social workers, especially for aging populations and adults with IDD.

CONCLUSIONS

Social workers are uniquely poised to bridge the aging services network, social services network, and US health care system to coordinate and improve care for one of the most vulnerable populations. The increasing longevity and multiple chronic needs of people with IDD provide the incen- tive for social work programs to expand formal coursework and continuing education on the IDD population. Advocacy is needed within and beyond human services agencies to reposition social workers as the care coordina- tion experts, and research is needed to determine best health care practices in meeting the myriad biopsychosocial needs of people with IDD who are aging. Rising health care costs and the burden on Medicaid and Medicare provide the financial incentive to find the most cost-effective means of pro- viding care to this dual-eligible population. Social workers can be the catalyst for change through training/education, advocacy, and identification of needs on all levels (i.e., individual, community, state) to create and sustain the valuable and necessary partnerships to reduce the health care disparities experienced by people who are aging with IDD.

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