Provision of Transition Services for Children with Autism Spectrum Disorders

Background:  

Approximately 500,000 children with special health care needs (CSCHN) make the transition from a pediatric to an adult provider each year (Reiss & Gibson, 2002). The need for transition services for this population puts a strain on the health care system, as well as the affected child and their families.  Unfortunately, we know little about the accessibility or provision of health care transition services within the children with Autism Spectrum Disorder (ASD) population.

Objectives:  

To determine how often children with ASD receive transition services and whether this rate fluctuates due to individual characteristics. 

Methods:  

An Access to Care Questionnaire was sent by electronic mail to 2,422 families of children that were enrolled in the Interactive Autism Network (IAN) registry.  A total of 118 eligible participants (12-18 years of age) completed the survey.  Adequate transition services were defined as having had at least one of three discussions about transition of care and one question regarding encouragement (see table).  Chi-square and ANOVA were used to determine characteristics associated with of provision of adequate transition services and each component measure. 

Results:  

Fewer than 15% of children with ASD met requirements for receiving adequate transition services (both discussion and encouragement occurred).  Analysis of discussion questions found 14.6% had a discussion about transitioning to an adult provider, 17.7% had a discussion about adult health care needs, and 19.5% had a discussion about health insurance continuation.  Analysis of the encouragement question found 30.1% had discussions (usually or always) with a health care provider about responsibility.

            Children with ASD who received adequate transition services was associated with having a mother with less than a bachelor’s degree (χ²(2)=6.96, p<.03), $250-$500 in out-of-pocket expenses for child’s health care (χ²(5)=18.8, p<.002), financial problems caused by child’s health care ( χ²(1)=4.12, p<.04), dual-parent household (χ²(3)=13.55, p<.004), increased number living in the household (χ²(6)=15.83, p<.01), and increasing age of the child (F(1, 92)=3.76, p<.05).

The table shows the statistically significant factors associated with the individual questions.

Question	Associated Characteristic	Chi-square/Anova Results
Discussion about adult provider	Diagnosis (Aspergers) Age of child Presence of medical home	χ2(6)=12.37, p<.05 F(2, 113)=5.09, p<.008 χ2(2)=6.86, p<.03)
Discussion about adult health care	Diagnosis (other) Age of child Presence of medical home Increasing affect on ability	χ2(6)=13.04, p<.04 F(2, 112)=4.83, p<.01 χ2(2)=6.68, p<.03 χ2(6)=15.72, p<.01
Discussion about health insurance	Diagnosis (Aspergers and Autism) Age of child Higher medical home score	χ2(6)=12.67, p<.04 F(2, 112)=5.38, p<.006 F(2, 72)=3.31, p<.04
Encouragement about responsibility	Diagnosis (Aspergers) Age of child Having no provider	χ2(3)=7.49, p<.05 F(1, 102)=6.16, p<.01 χ2(2)=7.05, p<.02

Conclusions:  

Very few children with ASD receive adequate transition services (15%).  Individual and family characteristics, such as child’s age and diagnosis are related to the provision of adequate transition services and the individual components of such.   These finding can be used to educate providers and develop interventions to improve the provision of health care transition services for children with ASD.