Little is known about the healthcare experience of adolescents with autism spectrum disorders (ASDs) as they transition into adulthood. Research suggests that the need for services among adolescents with ASDs continues and perhaps increases during this transition. Research in other areas indicates that the transition into adulthood is critical in establishing social, developmental and healthy adult life trajectories. The delivery of healthcare during this transition has been found to be suboptimal for adolescents with other psychiatric disorders; less is known about how adolescents with ASDs fare during this transition. The social and communication deficits associated with ASDs may exacerbate challenges in navigating systems. Since almost half of children with ASDs receive services through Medicaid, this system is likely an important healthcare provider for adolescents with ASDs. It is not known whether or how they remain eligible for Medicaid-reimbursed services as they age.
Objectives:
The objective of this study was to compare the proportion of adolescents with ASD who remain eligible for Medicaid-funded services as they age into adulthood with that of adolescents with intellectual disability.
Methods:
The data source was Medicaid eligibility and encounter files from claims from all 50 states and the District of Columbia. The sample of adolescents with ASD (n=4,183) included individuals ages 16-19 who had at least two Medicaid-reimbursed claims associated with an ASD (ICD-9 code 299.XX) in the primary position in 2001. The comparison group (n=21,857) included individuals with an intellectual disability (317.XX – 319.XX) diagnosis. Individual-level characteristic variables included age, race, gender, co-occurring diagnoses, and eligibility (duration and type).
Kaplan Meier curves were generated to determine differences in loss of eligibility from 2001-2005. Ongoing analyses include regression models to assess change in the rate of disenrollment and reenrollment over time between the groups.
Results:
Over half (58.5%) of adolescents with ASDs maintained Medicaid eligibility throughout the study period compared with 62.5% of adolescents with intellectual disability. Preliminary results indicate that African American adolescents in both groups are more likely to disenroll from Medicaid as they age than adolescents of other races/ethnicities. Adolescents with an ASD who remained enrolled in Medicaid and accrued an intellectual disability diagnosis (44%) were less likely to disenroll than those who remained enrolled and did not accrue an intellectual disability diagnosis (19%).
Conclusions:
More than half of adolescents with ASDs maintained eligibility for Medicaid as they aged into adulthood; however, they fared slightly worse than adolescents with intellectual disability in maintaining eligibility. Preliminary analyses suggest that adolescents in both groups from underserved and underrepresented communities may experience more disruption in eligibility than white adolescents. The accrual of an intellectual disability diagnosis among almost half (44%) of adolescents with ASD suggests that diagnosis switching or supplementing may be necessary to maintain eligibility. Given the expansion of Medicaid under the Affordable Care Act and the growing population of aging individuals with ASDs, the results of this study will help identify and disseminate healthcare policy that will allow for access to services for adolescents with ASD as they age into adulthood.