Health Care Transition and Youth with
Autism Spectrum Disorders
Jessica E. Rast, MPH1; Paul T. Shattuck, Ph.D1., MSSW; Renee Turchi, MD, MPH2,3; Craig Newschaffer, Ph.D1.; Jennifer Plumb, DSW1
1A.J. Drexel Autism Institute, Drexel University; 2Drexel University School of Public Health; 3St. Christopher’s Hospital for Children
Health Care Transition (HCT) services are recommended for all
youth as an effort to maximize life-long functioning and potential
by providing uninterrupted health care services. HCT is
particularly important for youth with special health care needs
(YSHCN). The provision of care within a medical home is also
recommended for all children and youth. HCT and receiving
care within a medical home are especially important for youth
with an autism spectrum disorder (ASD) because of the special
health care needs often found in this population. Previous
research has shown the benefit of both in YSHCN, but little
research addresses ASD specifically.
Study aims:
• Determine the distribution of receipt of HCT services of
YSHCN compared to youth with ASD, and the differential
distribution of HCT services by covariates.
• Explore the receipt of components of HCT in youth with ASD.
• Assess the effect of receipt of care within a medical home
and individual components of the medical home on HCT.
ASD compared to all YSHCN
Youth with ASD less often receive care within a
medical home and receive health care
transition services half as often as all YSHCN.
43%
26%
Youth
with
ASD
36%
16%
21%
Receives care within
a medical home
Receives health care
transition services
Pediatrician has talked to child about
seeing a doctor that treats adults*
26%
20%
Someone has discussed how to keep
or obtain health insurance
24%
22%
0%
HCT by household income
More youth with ASD with a medical home
receive HCT services than youth with ASD
without a medical home at household
incomes above 99% FPL.
43%
39%
38%
18%
13%
9% 11%
100%
Logistic regression predicting HCT services from medical home
Youth with ASD with a medical home are almost 3 times as
likely to receive HCT services than youth without a medical
home
0-99%
100-199%
200-399%
Family-centered care
2.38
Effective care coordination
1.97
No problem getting needed referrals
2.12
Usual source of sick and well care
1.28
0.1
Youth
without a
medical
home
35%
Youth with
a medical
home
0%
13%
19%
23%
28%
always
18%
24%
10
Results and conclusions
More youth with ASD with a medical home are
always encouraged to take responsibility for
their healthcare.
usually
1
Odds Ratio (log scale)
Level of youth responsibility
sometimes
0.76
400% or more
Household income presented as percent of federal poverty level
Covariates included in this
model include: race, primary
language, family income,
family structure, parent
reported severity, activity
limitations, insurance status,
total number of children in
the household, total number
of children with SHCN in the
household, highest level of
parent education, number of
conditions from a list of 20.
2.75
Care within a medical home
Personal doctor or nurse
never
Receiving care within a medical home was defined as a yes or
no indicator by receipt of five services, and matches the AAP
definition of a medical home:
1. Having a personal doctor or nurse.
2. A usual source for sick and well care.
3. Experiencing family-centered care.
4. Able to get needed referrals.
5. Receiving effective care coordination.
33%
Meets all four HCT components
All
YSHCN
*asked if child’s doctor treats only
children
48%
40%
22%
Receipt of HCT services was assessed as a yes or no indicator
if they met the following:
1. If youth had a provider that treated only children, discussing
the shift to an adult provider.
2. Discussing changing health care needs as youth becomes
an adult.
3. Discussing keeping or getting health insurance as an adult.
4. Encouraged to take age-appropriate responsibility for
healthcare.
Youth with a medical home more often receive the individual
components HCT service and all components than youth
without a medical home.
Doctor has talked to child about
adult health care needs
Sample and methods
Source: The National Survey of Children with Special Health
Care Needs (NS-CSHCN) 2009/10. Parent interviews were
completed for 40,242 children with special health care needs
(CSHCN). There were 1139 youth with ASD age 12-17 included
in present analyses.
Comparison of HCT receipt by medical home status
percent of youth that received HCT services
Background and objectives
Overall, youth with ASD less often receive the HCT services that maximize life-long functioning
and potential. Youth with ASD do not receive HCT services or provision of care within a
medical home as often as other YSHCN. Youth with ASD with a medical home receive HCT
services more often than youth without a medical home at all incomes above 100% of the FPL.
Having a medical home seems to effect the receipt of individual HCT components, with more
youth with ASD with a medical home encouraged to take responsibility for their healthcare, talk
about switching to a doctor that provides care to adults, and talk about changing health care
needs as an adult than youth without a medical home.
41%
100%
In youth with ASD, provision of care within a medical home results in better odds of receiving
HCT services. Receiving adequate care coordination and having family-centered care are the
most influential components of the medical home on HCT receipt, with youth more than twice
as likely to receive HCT services when they receive either.
Funding Acknowledgement: This research was produced through a generous private donation to the Life Course Outcomes Research Program.
This project was also supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human
Services (HHS) under grant number, UA6MC27364, and title, Health Care Transitions Research Network for Youth and Young Adults with Autism
Spectrum Disorders for the grant amount of $900,000. This information or content and conclusions are those of the author and should not be
construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.