Karen Goldrich Eskow

A cross-sectional cohort study of a large, statewide Medicaid home and community-based services autism waiver program.

State-specific 1915(c) Medicaid Home and Community-Based Services waiver programs have become central in the provision of services specifically tailored to children with autism spectrum disorders (ASD). Using propensity score matching, 130 families receiving waiver services for a child with ASD were matched with and compared to 130 families waiting on the registry (i.e., control group). Results indicate that participants in the waiver group reported more improvement in independent living skills and family quality of life over the last year compared to those on the registry. More frequent intensive individual support services and therapeutic integration were statistically predictive of improvement in a variety of domains. The results suggest that the waiver program may be promising for improving child and family functioning.

State adoption of Medicaid 1915(c) waivers for children and youth with Autism Spectrum Disorder.

BACKGROUND The prevalence of Autism Spectrum Disorder (ASD) has increased dramatically, with one in every 68 children in the U.S. currently diagnosed with ASD. Medicaid is the primary public funder of health care services for individuals with ASD. One mechanism state Medicaid agencies can use to craft ASD-specific services is a 1915(c) waiver. OBJECTIVE This study investigated what state policy makers perceived to be primary success factors and barriers to adopting an ASD specific 1915(c) waiver, as well as what services and supports are available in each state for children and transition-age youth with ASD. METHODS Data were collected by contacting state Medicaid directors via email with an electronic survey, with an 84% response rate. RESULTS Support from state legislators and parents and family members were the primary success factors in adopting an ASD specific waiver. The primary barrier was insufficient funding. States not adopting an ASD specific waiver also perceived that children and youth with ASD were served sufficiently well through other Medicaid benefits. Analysis of specific services indicated that the majority of states provide their services to children and transition age youth with ASD through a 1915(c) waiver for individuals with intellectual or developmental disabilities, often coupled with an ASD specific waiver for children, another 1915(c) waiver for children, and/or a another 1915(c) waiver, most often for children with serious emotional disturbance. CONCLUSION Further research is needed to determine which approach(es) is most effective in enhancing access and improving outcomes for children and youth with ASD.

State Design and Use of Medicaid 1915(c) Waivers and Related Benefits to Provide Services to Children and Youth With Autism Spectrum Disorder.

Medicaid is the most significant source of funding for medical services for individuals with autism spectrum disorder (ASD). We surveyed state Medicaid directors or their designees regarding their use of autism specific 1915(c) waivers and other Medicaid benefits to provide services to children and youth with ASD, with a response rate of 84%. Ten states used autism-specific waivers to provide services. These waivers varied in the number of children served, eligibility criteria and services provided, among other characteristics. Issues related to the number of children to serve and the specific services to provide were perceived to be the most difficult waiver design issues, while provider geographic distribution, capacity and expertise were perceived to be the most difficult implementation concerns. States used a variety of additional Medicaid state plan services (e.g., the optional rehabilitation benefit) and 1915(c) waivers (e.g., a more general waiver serving individuals with intellectual and developmental disabilities) to provide services to children and youth with ASD. Thus, continuing to examine the adequacy and effectiveness of state use of a range of Medicaid benefits, including autism-specific 1915(c) waivers is critical. Expanding the evidence base for intervention effectiveness is important as well.

Autism and Transitioning Youth: A Pilot Study of Sensory Processing and Family Quality of Life

This pilot study explored sensory processing in 10 transition-aged youth substantially impacted by autism and investigated the influence of sensory processing difficulties on family quality of life. These were explored through interviews with family members and through the completion of the Adolescent/Adult Sensory Profile. Results revealed difficulties in sensory processing, with trends noted in the types of problems seen in these young adults. Sensory processing influenced family quality of life, with families modifying activities to accommodate their young adult’s sensory needs. Implications of these results for occupational therapy are discussed, both for practice with youth served under the Individuals with Disabilities Education Act and for practice with young adults following transition.