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BerryCoord.CareArticle.pdf
Care Coordination in a Medical Home in Post-Katrina New Orleans: Lessons Learned
Susan Berry • Eleanor Soltau • Nicole E. Richmond •
R. Lyn Kieltyka • Tri Tran • Arleen Williams
Published online: 14 July 2010
� Springer Science+Business Media, LLC 2010
Abstract This is a prospective study to evaluate ability of a
nurse care coordinator to: (1) improve ability of a pediatric
clinic to meet medical home (MH) objectives and (2)
improve receipt of services for families of children with
special health care needs (CSHCN). A nurse was hired to
provide care coordination for CSHCN in an urban, largely
Medicaid pediatric academic practice. CSHCN were iden-
tified using a CSHCN Screener. Ability to meet MH criteria
was determined using the MH Index (MHI). Receipt of MH
services was measured using the MH Family Index (MHFI).
After baseline surveys were completed, Hurricane Katrina
destroyed the clinic. Care coordination was implemented for
the post-disaster population. Surveys were repeated in the
rebuilt clinic after at least 3 months of care coordination. The
distribution of demographics, diagnoses and percent
CSHCN did not significantly change pre and post Katrina.
Psychosocial needs such as food, housing, mental health and
education were markedly increased. Essential strategies
included developing a new tool for determining complexity
of needs and involvement of the entire practice in care
coordination activities. MHFI showed improvement in
receipt of services post care coordination and post-Katrina
with P \ 0.05 for 13 of 16 questions. MHI demonstrated improvement in care coordination and community outreach
domains. Average cost was $36.88 per CSHCN per year.
There was significant improvement in the ability of the clinic
to meet care coordination and community outreach MH cri-
teria and in family receipt of services after care coordination,
despite great increase in psychosocial needs. This study pro-
vides practical strategies for implementing care coordination
for families of high risk CSHCN in underserved populations.
Keywords Care coordination � Medical home � Children with special healthcare needs (CSHCN) � Title V CSHCN � Hurricane Katrina
Eleanor Soltau has relocated to Atlanta, Georgia, after her
involvement with this research.
S. Berry (&) � N. E. Richmond � A. Williams Department of Pediatrics, Louisiana State University
Health Sciences Center, 1010 Common Street Suite #610,
New Orleans, LA 70112, USA
e-mail: [email protected]
N. E. Richmond
e-mail: [email protected]
A. Williams
e-mail: [email protected]
E. Soltau
Children’s Hospital Medical Practice Corporation,
New Orleans, LA, USA
e-mail: [email protected]
S. Berry � N. E. Richmond � A. Williams Louisiana Office of Public Health, Children’s Special Health
Services, New Orleans, LA, USA
R. L. Kieltyka � T. Tran Department of Pediatrics, Louisiana State University Health
Sciences Center, 1010 Common Street Suite #2710,
New Orleans, LA 70112, USA
R. L. Kieltyka
e-mail: [email protected]
T. Tran
e-mail: [email protected]
R. L. Kieltyka � T. Tran Louisiana Office of Public Health, Maternal and Child Health
Services, New Orleans, LA, USA
123
Matern Child Health J (2011) 15:782–793
DOI 10.1007/s10995-010-0641-4
Introduction
Primary care in a medical home (MH) has many advanta-
ges for Children with Special Healthcare Needs (CSHCN)
[1, 2]. According to the Maternal and Child Health Bureau
and the American Academy of Pediatrics (AAP), a medical
home provides healthcare that is ‘‘accessible, continuous,
comprehensive, family-centered, coordinated, compas-
sionate, and culturally effective’’ [3]. CSHCN according to
the Maternal and Child Health Bureau are children who
‘‘have or are at increased risk for chronic physical, devel-
opmental, behavioral, or emotional conditions that require
health and related services of a type or amount beyond that
required by children generally [4]. This broad definition
includes not only children with more severe disabling
conditions, but children with common conditions such as
asthma and attention deficit disorder. CSHCN that meet
these criteria constitute approximately 13–20% of the
population [5], but consume a disproportionate share of
healthcare dollars [6–8]. Studies have demonstrated cost
savings when primary care for CSHCN is implemented in a
MH, primarily through decreased emergency room visits
and hospitalizations [7, 9–12].
In February 2007 the American Academy of Pediatrics
(AAP), American Academy of Family Practice, American
College of Physicians and American Osteopathic Associa-
tion developed the ‘‘Joint Principles of the Patient-Centered
Medical Home (PCMH)’’ [13] and adopted the National
Center for Quality Assurance (NCQA)—PCMH criteria as
standards for practices [14]. As of February 2009, at least 30
states, including Louisiana, had proposed legislation to
encourage the development of MHs for children [15]. Yet
while care coordination is a key component of MHs for
CSHCN, in traditional pediatric practices, time, staff limi-
tations and reimbursement issues have posed significant
barriers for its implementation [10, 16–19]. Research doc-
umenting successful models of care coordination in differ-
ent populations is lacking [11, 20]. Such models are
essential to assist pediatricians in providing MH’s that meet
the needs of CSHCN. One method of providing care coor-
dination in a practice is through the addition of a care
coordinator. A care coordinator works with the physician
and practice staff to link families to medical, public health,
and community resources and advocate for their needs [17,
21–24]. Several studies have demonstrated the ability of a
care coordinator to improve family satisfaction [4, 20] and a
few have analyzed cost [11, 12, 19, 25], but none in a
population with such high risk.
In Louisiana, 54% of CSHCN live in households below
the federal poverty level, vs. 46.9% nationally [26]. Loui-
siana’s Medicaid eligible CSHCN have twice the unmet
need for care coordination as those with private insurance
(22.4 vs. 11.0%) [27]. Compared to the national average,
Louisiana CSHCN families spend more hours each week
coordinating their child’s care (5–10 h/week, 8.9% US vs.
12.9%; P \ .05). This study evaluates the ability of a nurse care coordinator to improve MH criteria in an urban, pre-
dominantly Medicaid pediatric practice in post-Katrina
New Orleans, and to meet the needs of families of CSHCN
when resources were disrupted, families displaced, and
much of the healthcare infrastructure destroyed. Lessons
learned in implementing care coordination for this high risk
population are discussed.
Methods
In March 2005, after obtaining Institutional Review Board
approval from Louisiana State University (LSU) Health
Sciences Center and Children’s Hospital of New Orleans,
Louisiana’s Title V Children’s Special Health Services
(CSHS) Program hired a nurse to coordinate care for an
urban, academic pediatric practice. The practice is located
in downtown New Orleans on the city’s major bus route,
next to a key Medicaid office, with the goal of providing
comprehensive care to an underserved, largely Medicaid
population. The clinic is the primary outpatient teaching
practice, or ‘‘continuity clinic’’, for 27 LSU pediatric res-
idents, and is staffed by 5 general pediatric faculty and one
developmental pediatrician.
Baseline surveys were completed and care coordination
begun just before Hurricane Katrina struck in August 2005.
The clinic received four feet of water. All computers, most
medical records, study data, and the backup flash drive
were destroyed. Only initial baseline aggregate results
presented on a poster survived. When the rebuilt clinic
opened in March 2006, care coordination resumed in the
post-disaster environment.
MH Rating
The Medical Home Index (MHI) [28] is a validated, self-
rating tool for quality improvement within the practice. It
consists of 25 items or themes divided into six domains of
practice activity that are critical to the quality of care in a
medical home: 1. Organizational capacity; 2.Chronic con-
dition management; 3. Care coordination; 4. Community
outreach; 5. Data management; 6. Quality improvement.
Questions are scored across four levels of achievement
corresponding to a continuum of quality: 1. Good basic
pediatric care; 2. Responsive care; 3. Proactive care; 4.
Comprehensive care. Achievement can be partial or com-
plete within each level, depending on the rater’s evaluation
of activity within the practice compared to the description
provided for each theme and level. Six pediatric faculty,
the office manager, and the clinic nurse completed separate
Matern Child Health J (2011) 15:782–793 783
123
baseline MHI’s in March 2005 before Katrina and care
coordination, and follow-up MHI’s post care coordination
in March 2007, 1 year after the clinic reopened.
Faculty Training
Following the baseline MHI survey, a 2-h workshop on
MH concepts was held for clinic faculty and staff using
training materials from the AAP Website. The slide set,
‘‘Common Elements’’, was presented with a case presen-
tation of the care coordinator’s own child with Down
syndrome, whose doctor was ‘‘an excellent pediatrician,
but whose practice was not a MH.’’ AAP policies on MH
and care coordination, Louisiana data on CSHCN, and a
review of state and national MH initiatives were presented.
The importance of teaching MH concepts to pediatric
residents in continuity clinics as embraced in the Future of
Pediatric Education II guidelines was emphasized [23, 29,
30]. MHI baseline results were presented.
Family Inclusion Criteria
A CSHCN Screener [5, 31] modified for literacy level
(Table 1) was used to identify CSHCN in the practice. At
baseline, a convenience sample of families of CSHCN
identified by the screener who had been receiving primary
care services in the clinic for at least 3 months were sur-
veyed. After the flood, baseline families could no longer be
identified. Therefore, new CSHCN families were identi-
fied, followed at least 3 months, and surveyed.
Case Complexity
The HOMES Complexity Index [32] was completed by
parents of CSHCN identified by the screener at baseline to
determine CSHCN case complexity and to appropriately
target care coordination services. Since the HOMES failed
to distinguish degree of complexity within the clinic pop-
ulation, the care coordinator developed a new tool to
determine intensity of care coordination needed for the
post-disaster population (Appendix 1). Using this tool,
CSHCN were considered Level 1 if they required simple
referrals that could be managed by office staff and Level 2
if they had more complex needs requiring the care coor-
dinator. For example, a child with asthma who had minimal
emergency room visits or missed school days was Level 1.
The same child with many missed school days or multiple
emergency room visits in the past year was Level 2. An
autistic child with an appropriate Individual Educational
Plan (IEP) for special education receiving family support
services, such as respite care, was Level 1; the same child
receiving inadequate school services or with frequent
school expulsions was Level 2. CSHCN frequently chan-
ged levels as their needs changed, indicated by the color
sticker on the chart. Care coordinator caseload was there-
fore fluid, depending on families’ ever-changing needs.
Care Coordination Activities
After CSHCN were identified by the CSHCN Screener, the
care coordinator met with the family in the exam room
while waiting for the physician. After a brief assessment,
level of care coordination complexity was determined
using the tool in Appendix 1. If the child met criteria for
Level 2 complexity, an effort was made to identify
immediate needs that could be met during the clinic visit.
Further assessment was done after consultation with the
physician, and a care plan developed. Because the clinic
had no electronic medical record (EMR), a separate care
coordination chart was created and kept in the coordina-
tor’s office. Children who did not meet criteria for Level 2
complexity had care coordination needs handled by the
physician and front desk staff. To encourage physicians to
make Level 1 referrals, information and forms for routine
referrals were wall-mounted for ease of use. The coordi-
nator held quarterly MH meetings to develop clinic pro-
cedures and to discuss community resources. She also
arranged for Families Helping Families to hold ‘‘IEP
Table 1 CSHCN Screener (Modified from CAHMI http://www.cahami.org)
1. Does your child need or use medicine prescribed by a doctor?
List prescription medicines your child takes on a regular basis:
2. Does your child need or use more medical care than other children the same age?
3. Does your child have trouble doing things most children the same age can do?
4. Does your child need or get special therapy, such as physical therapy, occupational, or speech therapy?
5. Does your child need counseling or treatment for behavior problems, emotional problems or delays in walking, talking, or activities that other children his age can do?
6. If you answered yes to any question, has this problem lasted or is it expected to last at least 12 months?
Interpretation: If medicines listed in Question 1 are indicative of a chronic condition or the answer to Question 6 is yes, the child is considered a CSHCN
784 Matern Child Health J (2011) 15:782–793
123
Clinics’’ to teach families how to obtain special education
services in the fragmented school system.
Family Receipt of Services
The MH Family Index (MHFI) [33] was used to measure
services received. Slight modifications were made to
ensure a 6th grade reading level. The coordinator was
trained to conduct the survey using a scripted approach to
minimize bias. After obtaining informed consent, the sur-
vey was given to the family to complete in the waiting
room. Families were offered help and if requested, ques-
tions were read aloud. Demographic characteristics, med-
ical information, care coordinator contacts, and MHFI
results were entered into a Microsoft ACCESS database.
Determination of Sample Size
A sample size of 150 was yielded to compare two pro-
portions using a two-sided test to detect differences of
25%, with alpha set at 0.05 and 80% power. It was
hypothesized that 50% of families surveyed at baseline
would respond positively on average for all questions in the
MHFI. Calculations were adjusted 20% to account for
response bias and participant attrition.
Data Analysis
A two independent sample test for binomial proportions
was used to determine if there were significant differences
in responses for the MHFI pre- and post care coordina-
tion. The 4-point Likert scale (never, sometimes, often,
always) was collapsed into two categories: never or
sometimes and often or always. Only proportions
approximating the normal distribution for binomial data
were tested. Alpha was set at 0.05 for statistical signifi-
cance. For the MHI, the median score for each question
within a domain and then the average median for each
domain were calculated separately for pre and post sur-
veys. Microsoft Excel was used for MHFI and MHI
calculations.
Results
Study Participant Characteristics Pre- and Pos Care
Coordination
At baseline there were 2,858 patients in the practice. Of the
212 families screened, 40% of children were CSHCN.
When the clinic reopened in March 2006, 52% of children
coming to the practice were CSHCN. The percent
decreased steadily to 38% by April 2007, the end of the
study period. By December 2007, there were 5,146 chil-
dren in the practice; 2,287 (44%) were new to the practice
since Katrina. Of these, only 32% were CSHCN.
The baseline sample includes data from the first 68
consecutive surveys conducted pre- care coordination, in
March and April 2005. Subsequent survey data was lost in
the flood. After Katrina, the first 150 families with CSHCN
that consented to participate were enrolled in the study.
After 3 months, between October 2006 and April 2007, 92
of these families completed the MHFI. Sex, race, payer
type, resident city, and level of care for the 150 CSHCN
identified post-Katrina were nearly identical to those sur-
veyed (Table 2).
Demographics and diagnoses for the study samples
surveyed at baseline and post care coordination were
similar (Table 3). At baseline, 91% of the total clinic
population was enrolled in Medicaid; the percent CSHCN
enrolled in Medicaid at that time is unknown. At follow-up,
93% of the total clinic population and 98% of 149 CSHCN
were enrolled in Medicaid.
Complexity of Care Coordination
Pre-Katrina the HOMES Complexity Index yielded an
average score of 7.22 on a scale of 1–10, with 7–10 indi-
cating high complexity.
Post-Katrina, there were 1,598 recorded contacts (phone
calls and visits) for the study sample during the first
12 months after the clinic reopened; 61% were care coor-
dinator contacts and 39% were physician contacts. For
Level 1 patients 55% were with the care coordinator; for
Level 2 patients 82% were with the care coordinator.
Table 4 shows percent of each type of encounter for the
Table 2 Comparison of post- Katrina CSHCN families
followed and CSHCN families
surveyed
Indicators CSHCN identified
post-Katrina n = 150
CSHCN surveyed
n = 92
Sex 62% Male; 38% female 62% Male; 38% female
Race 77%—African American 78% African American
Payor type 98% Medicaid 98% Medicaid
Residence city 78%—New Orleans 78%—New Orleans
Level of care Level 1–86%; Level 2–14% Level 1–86%; Level 2–14%
Matern Child Health J (2011) 15:782–793 785
123
five most common diagnoses seen. A complete list of
patients by diagnosis and encounter type is included in
Appendix 2.
Referrals
Types of referrals included educational (Part C Early
Intervention, Special Education, and 504 Accommoda-
tions), public health (Office for Citizens with Develop-
mental Disability (OCDD) Waiver List, Personal Care
Services, Title V CSHS), family support, and subspecialty
including mental health. Wall-mounted Level 1 referral
forms included early intervention, OCDD, school letters,
mental health referrals, and family support groups.
MHFI
The final analysis was limited to 22 questions which pro-
vided complete and comparable pre- and post care coordi-
nation data. The response rate for the MHFI was 84.0% in
2005 and 61.3% in 2007. The average number of questions
answered was 74.8 and 93.3%, respectively. The proportion
of respondents who answered ‘‘often’’ or ‘‘always’’, or
‘‘yes’’ is displayed in Table 5. Of the 22 indicators, 19
significantly improved. Significantly more families per-
ceived their physician to be accessible when needed and to
communicate well with them and with their child (questions
1, 3a, 3b, 6), even though over 85% of families were sat-
isfied in these areas at baseline. Families also perceived
their physician to be more family-centered (questions 4, 5,
6,). Post care coordination, more families thought the office
staff knew who they were (question 2a), even though 44%
were new to the practice. While 85% of baseline families
felt that staff involved in their child’s care knew their
child’s condition, history, and concerns, 94% thought this
was true after addition of the care coordinator (question 14).
Post care coordination, more families reported receiving
care coordination (questions 8, 9, 10a, 10b, 11a–d), and help
in communicating with their child’s school (question 12),
connecting them with parent support groups (question 15)
and finding adult services for youth in transition (question
16). The three questions that did not show significant
improvement exceeded 85% satisfaction at baseline.
MHI
Table 6 shows baseline and follow-up scores on the MHI
with the corresponding level for each domain. Post care
coordination, improvements in Care Coordination and
Community Outreach domains were achieved. For all other
domains, level did not change.
Cost
The contract for the care coordinator was $76,128 per year.
By the end of 2007, the care coordinator was coordinating
a practice of 5,146 patients with 2,064 CSHCN at an
average cost of $36.88 per CSHCN per year.
Discussion
Care coordination in the MH for high risk CSHCN popula-
tions presents special challenges. Our population of urban,
poor CSHCN was high risk before Hurricane Katrina. After
Katrina, eighty percent of the city was flooded, the popula-
tion was displaced, and basic services including all utilities,
transportation, and phone service were disrupted for months.
Despite this loss of city and healthcare infrastructure, there
Table 4 Comparison of RN-CC and physician contacts for top 5 diagnoses of 149 patients
Diagnosis RN-CC contacts Physician contacts
Cerebral palsy 185 (84.5%) 34 (15.5%)
Developmental delay 93 (62%) 57 (38%)
Autism 47 (59.5%) 32 (40.5%)
ADHD 135 (56.3%) 105 (43.8%)
Asthma 201 (52.5%) 182 (47.5%)
Table 3 Comparison of Surveyed Families of CSHCN Pre- and Post-RN-CC
Pre-RN-CC
n = 81 (54%) Post-RN-CC
n = 92 (62%)
Race 92% African American 94% African American
8% Caucasian 5% Caucasian
1% Other
Sex 27% Female 35% Female
73% Male 65% Male
Payor type Unavailable 98% Medicaid
1% Private insurance
1% TriCare
Average age 7 years old (Range
0–16 years)
6 years old (Range
0–20 years)
Top five primary
diagnoses
38% Asthma 27% Asthma
11% ADHD 19% ADHD
7% Cerebral palsy 10% Developmental
delay
6% Developmental
delay
8% Cerebral palsy
4% Autism Autism
6% Prematurity
Speech delay
786 Matern Child Health J (2011) 15:782–793
123
was significant improvement in the ability of the clinic to
meet MH criteria and in family receipt of services. Key
strategies for implementing care coordination for this high
risk population are discussed below.
Stratification by complexity and Care Coordinator
Caseload
The most difficult part of implementing care coordination
even before the hurricane was determining how one nurse
could coordinate care for the 40% of children identified by
the screener (estimated to be 1,143 patients). This is high
compared with an average of 26.9% found by Gupta [16].
Pre-Katrina Louisiana had the second highest percent
CSHCN of any state, with the highest risk CSHCN living
in urban areas [27]. CSHCN from high risk populations
have a greater need to be linked to community and public
health resources such as special education, early interven-
tion, therapies, waiver services, family support services,
and SSI disability. In our clinic, the average HOMES
Complexity Index for CSHCN identified was in the most
complex range. Hence, methods for triaging by complexity
and targeting care coordination services described in the
literature for less high risk populations were of no use for
Table 5 Percent positive responses from the medical home family index
2005
%, 95%(CI)
n = 68
2007
%, 95%(CI)
n = 92
P-value
1. My child can see the doctor or I can speak to the doctor when I need to 66% (55%, 78%) 94% (90%, 99%) \0.0001 2a. When I call the office staff knows who we are 42% (30%, 54%) 76% (68%, 85%) \0.0001 2b. When I call the office staff appreciates our needs and what we ask for 89% (81%, 97%) 94% (89%, 99%) 0.28
3a. My doctor communicates well with me 86% (78%, 95%) 99% (93%, 100%) 0.005
3b. My doctor communicates well with my child 86% (76%, 96%) 100% (96%, 100%) 0.003
4. My doctor asks me to share with him/her my knowledge and experience
as the parent/care giver of my child
72% (61%, 83%) 86% (78%, 94%) 0.02
5. My doctor asks how my child’s condition affects our family. (Example:
the way it affects my child’s brothers and sisters, the time my child’s care takes,
lost sleep, extra expenses, etc.)
54% (42%, 67%) 76% (67%, 85%) 0.006
6. My doctor listens to my concerns and questions 92% (86%, 99%) 100% (98%, 100%) 0.02
7. We plan for my child’s care by writing down important things to remember,
treatments my child needs, or phone numbers
86% (78%, 95%) 84% (76%, 91%) 0.64
8. My doctor and staff work with our family to create a written plan of care
for my child
31% (20%, 43%) 75% (66%, 84%) \0.0001
9. I receive a copy of my child’s care plan whenever it is changed 32% (20%, 44%) 78% (70%, 87%) \0.0001 10a. My doctor and the office staff use and follow through with care plans they
have created
37% (24%, 50%) 90% (84%, 96%) \0.0001
10b. My doctor and the office staff look at and change the care plan as needed 40% (26%, 53%) 89% (83%, 95%) \0.0001 11a. My doctor has a staff person or ‘‘care coordinator’’ who helps me with
difficult referrals, payment issues, activities that need follow up
47% (34%, 60%) 87% (80%, 94%) \0.0001
11b. My doctor has a staff person or ‘‘care coordinator’’ who helps me find
needed services. (Such as transportation, equipment, or home care.)
48% (34%, 61%) 83% (75%, 91%) \0.0001
11c. My doctor has a staff person or ‘‘care coordinator’’ who makes sure that
the planning of care meets my child’s and my family’s needs
67% (55%, 79%) 91% (85%, 97%) 0.002
11d. My doctor has a staff person or ‘‘care coordinator’’ who helps each
person involved in my child’s care communicate with each other
54% (41%, 67%) 84% (76%, 92%) 0.0002
12. When I ask for it, my doctor or office staff help me to explain my
child’s condition to school personnel or child care providers*
58% (45%, 71%) 85% (77%, 93%) 0.0003
13. Someone at the office is available to review my child’s medical record
with me when I ask to see it
86% (78%, 95%) 99% (93%, 100%) 0.005
14. Office staff who is involved in my child’s care know about my child’s
conditions, history and things that concern us and what is important to us
85% (76%, 93%) 94% (87%, 94%) 0.16
15. Office staff helps connect me with family educational or assistance
organizations and places in my area or state where I can receive information
about my child
37% (26%, 49%) 87% (80%, 94%) \0.001
16. My doctor assists me in finding adult health care services for my child 38% (26%, 50%) 82% (73%, 92%) \0.0001
Matern Child Health J (2011) 15:782–793 787
123
our practice. After Katrina, the percent CSHCN rose to
52% before slowly decreasing to less than the pre-Katrina
rate. Therefore a new tool for stratifying by complexity
was developed (Appendix 1). This permitted the care
coordinator to focus on CSHCN with more complex needs
while enabling the rest of the practice to coordinate care for
the less complex Level 1 CSHCN. Our experience under-
scores the importance of stratifying by complexity for high
risk CSHCN populations.
Second, the entire practice became engaged in care
coordination activities. This represented a major shift in
responsibilities. No longer were community and public
health referrals viewed as the sole responsibility of the care
coordinator. Physicians were frequently not familiar with
many public health resources, or how to advocate for special
education services. To facilitate this transition, quarterly
meetings were held to discuss available resources and
directions and forms for referrals were placed in convenient
wall-mounted displays. Families Helping Families, a family
advocacy group, held ‘‘IEP clinics’’ to educate families about
school services. When a Level 1 CSHCN had difficulties,
such as in obtaining an IEP or mental health services, they
were changed to Level 2 and the care coordinator was con-
sulted. By using this fluid stratification system and working
together, all CSHCN in the practice received coordinated
care, as evidenced by the MHFI results.
Concept of MH and Care Coordination Among Clinic
Staff
Before completing the MHI, most faculty assumed that
they provided a MH for their patients by following Bright
Futures guidelines, teaching comprehensive care to resi-
dents, and meeting the state’s expanded Medicaid
requirements for Community Care, which linked children
to the practice as their ‘‘MH’’ and required that specialty
care be coordinated through the practice. However, base-
line MHI results indicate that the clinic had much room for
improvement. Clinic faculty and staff rated the clinic as
lowest in every MHI domain (Table 6). Repeat results
2 years later indicated clinic advancement of one level in
the domains of care coordination and community outreach,
the areas targeted by the care coordinator. In a practice
with less intense care coordination needs, the care coor-
dinator could have focused on other MHI or NCQA criteria
as well, utilizing processes for quality improvement
developed by the Center for Medical Home Improvement
[34]. Despite the inability to address other medical home
criteria, this clinic received NCQA level 1 certification
soon after the completion of this study.
Improvement from level 1 to level 2 in the care coordi-
nation domain of the MHI represents a significant change in
priorities within the practice. Pre-Katrina, educational and
psychosocial needs were frequently missed in the provision
of primary care, even after MH training. Post-Katrina,
psychosocial needs could not be ignored: depression and
post traumatic stress disorder were common, schools were
slow to re-open, special education services were very lim-
ited, parents were frequently separated, and many families
were stressed by living in Federal Emergency Management
Agency trailers or sharing close quarters with relatives. As
the clinic struggled to meet these psychosocial and educa-
tional needs, care coordination became a collaborative
activity. Physicians who were previously focused on acute
care were more motivated to make many community
referrals. The small improvement in MHI represents a
major shift in practice priorities, as together the practice
sought to address the post-disaster needs.
Table 6 Comparison of 2005 and 2007 medical home index results for 8 clinic staff
MHI domains Themes Score
(2005)
Score
(2007)
Level
(2005)
Level
(2007)
Organizational capacity Mission, communication, access, medical records,
environment, family feedback, cultural competence,
staff education
1.25 1 Level 1: Complete Level 1: Complete
Chronic condition
management
Identify CSHS, continuity of care across settings,
cooperative mgmt with specialists, transition to
adult services, family support
1.5 1.75 Level 2: Partial Level 2: Partial
Care coordination Role definition, family involvement, child and family
education, assessment of needs and plan of care,
resource information and referrals, advocacy
1.25 2.0 Level 1: Complete Level 2: Complete
Community outreach Community assessment of needs of CSHCN, community
outreach to agencies and schools
1.0 1.5 Level 1: Partial Level 2: Partial
Data management Electronic data support, data retrieval capacity 1.25 1.25 Level 1: Partial Level 1: Partial
Quality improvement Quality standards (structures), quality activities
(processes)
1.25 0.625 Level 1: Complete Level 1: Complete
788 Matern Child Health J (2011) 15:782–793
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Improved Receipt of Services
After the addition of the care coordinator, families reported
services were more accessible, family-centered, and coor-
dinated (Table 5). There were no other changes to the
practice after Katrina that increased physician accessibility
(such as increased hours of operation or email access) or
family-centeredness. This association between care coor-
dination and favorable family-provider relations was also
found in the 2005–2006 National Survey of CSHCN, where
data showed that families who reported receiving adequate
care coordination were also more likely to say their care
was family-centered, and that they experienced partner-
ships with professionals, were satisfied with services, and
had ease of access to needed referrals [35].
The care coordination activities listed in the MHFI
questions are all activities that are more likely to be neglected
in a traditional practice during times of healthcare shortage
and limited resources. Even with the care coordinator, pro-
viding continuity of care was particularly difficult post-
Katrina. Displaced families were highly mobile, and
destruction of phone and postal service infrastructure made
locating and communicating with patients difficult for over a
year post-Katrina. The lack of community resources, par-
ticularly mental health, made meeting recognized needs
difficult. Finally, since most clinic charts were lost in the
flood, lack of an EMR made access to previous medical
records impossible for most returning patients. Without the
addition of the care coordinator prior to Hurricane Katrina, it
would have been extremely difficult to provide more than
basic clinical care after Katrina. For these reasons, improve-
ment in receipt of services is particularly impressive.
While the demographics and top five diagnoses of the
returning clinic population were surprisingly similar to pre-
Katrina, their need to be connected with community and
public health resources was much greater. Because the care
coordinator could meet these needs, satisfaction with the
clinic improved. Many of the risk factors of the returning
population are the same as those associated with the
Medicaid population: homelessness, underserved, low
income, and highly mobile [36, 37]. CSHCN as a group are
disproportionately poor and disadvantaged [38]. This study
underscores the importance of care coordination in the MH
for high risk, underserved CSHCN populations.
Cost
Few studies have addressed the cost of care coordination
and methods of computing cost are not uniform [11, 12,
25]. The cost of $36.88 per year per CSHCN is low com-
pared with that published in other studies. Palfrey estimated
a cost of $400 per patient using nurse practitioners who
spent 8 h per week conducting care coordination for
complex CSHCN. This included the cost of bimonthly
trainings and home visits, and appears to be a more inten-
sive intervention designed for fewer patients [12]. Antonelli
estimated the cost to the practice of non-billable care
coordination activities of all staff to be between $51 and $71
per patient per year [25]. In our study the challenges of
locating resources, finding transient patients, and meeting
complex needs increased the time spent per patient.
Dividing CSHCN by complexity and requiring faculty and
staff to make referrals for less complex patients were
essential strategies for managing the vast needs of this clinic
population with one care coordinator. Including the time
spent by other staff would have significantly increased the
cost per patient. Practices with fewer CSHCN have been
able to manage with a part time care coordinator [12, 19].
Absorbing these costs can be difficult for medical prac-
tices. None of the current procedural terminology codes for
care coordination activities are reimbursable by Louisiana
Medicaid, such as phone calls (98966-98968), team con-
ferences (99368), and care plan oversight services (99374,
99375) [39, 40]. Reimbursement of these codes would help
make care coordination more sustainable financially. This
care coordinator was funded by the LA Title V block grant.
Because of the success of this model, the LA Title V CSHS
program currently offers both financial incentives for MHs
to designate a care coordinator within the practice and
technical assistance to implement care coordination. LA
CSHS is working with LA Medicaid to improve reim-
bursement for care coordination activities, both in the cur-
rent fee for service system and in the capitated system
currently proposed for health care reform. It seems feasible
that reimbursement of these CPT codes alone could cover
the cost of $36.88 per CSHCN.
Limitations of the Study
We initially planned to investigate the benefit of a care
coordinator on patient care outcomes in our practice in New
Orleans, not knowing that a natural disaster would occur
between the pre- and post evaluations. While the major
study design remained intact, Katrina forced us to revise our
methodology to address both the loss of the baseline data-
base and the environmental changes that we could not
control. This imposed significant limitations on the study;
however, it also provided an unprecedented opportunity to
evaluate the impact of a care coordinator in a post-disaster
environment with pre-disaster data to serve as a comparison
group. Strategies to deal with such overwhelming needs had
to be devised, and their effectiveness measured. Therefore,
we were able to redirect our study to examine outcomes in a
situation that would otherwise be difficult or impossible to
investigate. The result was the development of an efficient
Matern Child Health J (2011) 15:782–793 789
123
and effective model for care coordination when dealing
with a high risk population with complex needs.
There were several limitations imposed by Katrina.
Although demographics and diagnoses did not differ between
the two populations surveyed, with patients unable to serve as
their own controls, it is not known if unmeasured differences
existed. Baseline surveys were not repeated after Katrina
because it was felt that withholding care coordination for
3 months to re-establish a new baseline would have been
unethical. After Katrina it was impossible to determine whe-
ther care coordination resulted in decreased emergency room
visits or hospitalization rates, not just because identifying
information was lost but because few hospitals were open.
Patients’ perceptions of the clinic post-Katrina may be
biased by the lack of other available medical care and
gratitude at receiving any medical care at all. We believe
that the MHFI questions were specific enough to measure
receipt of MH related services with minimal bias.
Finally, there are methodology limitations unrelated to
Katrina. One limitation is potential responder bias since the
care coordinator distributed the family surveys. Another is
that the method of analyzing MHI results individually and
averaging them differs from that originally designed, which
could threaten internal validity. An advantage of this
method is that it allowed us to obtain individual impres-
sions of the clinic, without allowing physicians and staff to
bias each other.
Conclusions
Providing care coordination can be challenging for a busy
pediatric practice, especially one with a high percent of
CSHCN with complex needs and scarce community
resources. This study demonstrates that the addition of a
care coordinator can be an effective way to link CSHCN to
public health, mental health, family support, educational,
and community resources, even in a post-disaster
environment, and provides practical strategies for doing so.
Essential strategies include stratifying CSHCN by com-
plexity of need using a tool such as that presented in this
study, and developing a team approach to maximize the
efficiency of the care coordinator. Data suggest that the
strategies used were successful in this population in
improving family receipt of services and MH criteria in care
coordination and community outreach domains. Care was
perceived to be more accessible, more family-centered, and
more coordinated. We believe that these strategies are
applicable to other high risk CSHCN populations as well.
As more states are adapting MH legislation in efforts to
decrease healthcare costs by decreasing emergency room
visits and hospitalization rates, care coordination reim-
bursement strategies must also be incorporated into
healthcare reform initiatives. Primary care providers do not
reap the healthcare savings of care coordination; neither
should they bear the cost. Since high risk populations, such
as Medicaid eligible CSHCN, have greater need for care
coordination, Medicaid reimbursement of care coordination
activities in the MH is essential. Care coordination for
CSHCN meeting the broader MCHB definition may involve
40% or more children in the practice, and therefore cannot
be provided by referral to a care coordination agency. It
must be provided in the MH. Only then can CSHCN receive
the timely, comprehensive and coordinated care needed
to optimize their potential while decreasing healthcare
costs.
Acknowledgments This Work was supported by Maternal and Child Health Bureau Title V Grant #B04MC11257.
Conflict of Interest Statement None.
Appendix 1
See Table 7.
Table 7 Care coordination levels of care (LOC)
Level I Level II
Minimal intensity of services (0–4 h of staff time per month) Moderate intensity of services (5 or more hours of staff time per month)
Criteria Criteria:
Routine diagnosis, care and sick visits
Routine exams
Simple specialty or service referrals
Long term but stable diagnosis
Periodic consultations, screenings and referrals
Ongoing, long term services or therapies requiring
referral updates and renewals
Office visits at least every 6 months
Complex diagnosis and/or mental, psychosocial issues
Multiple co-morbidities
Unstable conditions requiring multiple interventions
(intense services)
Complex and/or unusual specialty needs
790 Matern Child Health J (2011) 15:782–793
123
Appendix 2
See Table 8.
Table 8 Distribution of primary diagnoses by type of encounter
Diagnosis Number of patients
with primary diagnosis
RN-CC contacts Office visits Total contacts
by diagnosis
Acquired deformity of limb, site NOS 1 9 (52.9%) 8 (47.1%) 13 (100%)
Attention deficit hyperactivity disorder 21 135 (56.3%) 105 (43.8%) 240 (100%)
Allergies 1 9 (69.2%) 4 (30.8%) 13 (100%)
Acute myelogenous leukemia 2 10 (62.5%) 6 (37.5%) 16 (100%)
Asthma 45 201 (52.5%) 182 (47.5%) 383 (100%)
Autism 5 47 (59.5%) 32 (40.5%) 79 (100%)
Behavior disorder 2 8 (72.7%) 3 (27.3%) 11 (100%)
Cerebral hemorrhage 1 6 (75%) 2 (25%) 8 (100%)
Cerebral palsy 10 185 (84.5%) 34 (15.5%) 219 (100%)
Chronic upper respiratory infection 1 1 (12.5%) 7 (87.5%) 8 (100%)
Cystic fibrosis 1 3 (50%) 3 (50%) 6 (100%)
Developmental delay 14 93 (62%) 57 (38%) 150 (100%)
Diabetes mellitus type I 1 7 (50%) 7 (50%) 14 (100%)
Down’s syndrome 1 16 (84.2%) 3 (15.8%) 19 (100%)
Drug withdrawal-neonatal 1 5 (38.5%) 8 (61.5%) 13 (100%)
Epidermolysis bullosa 1 4 (44.4%) 5 (55.6%) 9 (100%)
Failure to thrive 3 18 (42.9%) 24 (57.1%) 42 (100%)
General convulsive epilepsy 6 32 (66.7%) 16 (33.3%) 48 (100%)
Hearing loss 1 5 (62.5%) 3 (37.5%) 8 (100%)
Table 7 continued
Level I Level II
Minimal intensity of services (0–4 h of staff time per month) Moderate intensity of services (5 or more hours of staff time per month)
Guideline examples: Guideline examples:
Annual well care visits and screenings
Routine immunizations
Simple to moderate behavioral health referrals and follow up
Simple to moderate educational needs
Mild to moderate Down’s syndrome
Stable, custodial CP whose services are established
requiring routine renewal of services
Unstable or new diagnosis of moderate to severe CP, genetic disorders
Potentially life threatening diagnosis
Multiple ER visits/hospital admissions (three or more annually)
Suspected child abuse, neglect
Frequent noncompliance issues with caretaker or patient
Application of Criteria
Staff time includes time spent by MD, front office, care coordinator, faxing, referrals, phone calls etc
Level I—care coordination provided by physician and office staff with consultation as needed by RN-CC
Level II—care coordination provided by physician, office staff and RN-CC. Care plan is updated in the medical chart with each visit by the
RN-CC
Additional Facts
LOC is assigned after initial consultation with physician and in the case of possible Level II, assessment by RN-CC
LOC is not static. Intensity of services can either increase or stabilize. LOC should be evaluated with each visit and more often as the patient’s
condition changes
Color of chart sticker will be changed with changes in LOC and rationale documented in nurse’s notes
Matern Child Health J (2011) 15:782–793 791
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