20132
Home and Community Based Services Waivers for Children with Autism Spectrum Disorder
Autism spectrum disorder (ASD) is a complex lifelong neuro-developmental disorder associated with repetitive behaviors, restricted interests and impairments in social communication that affects one in 68 children. The disorder often co-occurs with significant behavioral and communication challenges. While the causes of autism are unclear, early diagnosis and evidence-based treatment, such as therapy delivered by trained behavior analysts for up to 40 hours per week, have been shown to enhance cognitive and adaptive functioning. Although several states have enacted policies to facilitate access to care, such as insurance mandates or mental health parity laws, many families of children with ASD experience significant barriers to obtaining needed services.
Objectives:
To describe characteristics of 1915(c) Home and Community Based Services (HCBS) waivers for children with ASD across states and over time. While increasingly popular, little is known about these Medicaid waivers. Understanding the characteristics of these programs is important to clinicians and policy makers in designing programs to meet the needs of this vulnerable population and to set the stage for evaluating changes that occur with the implementation of health care reform.
Methods:
HCBS waiver applications that included children with ASD as a target population were collected from the Centers for Medicare and Medicaid Services (CMS) website, state websites, and state administrators. A data extraction tool was used to document waiver inclusions and restrictions, estimated service provision and institutional costs, and the inclusion of four core ASD services: respite, caregiver support and training, personal care, and behavioral treatments.
Results:
Investigators identified 29 states offering 49 current or former waivers that explicitly included children with ASD in their target populations. Of these waivers, 10 were exclusively targeted to children with ASD while the others included either adults with ASD or adults and children with other developmental disabilities. Waivers differed substantially across states in the type and breadth of ASD coverage provided. Specifically, waivers varied in the (1) minimum or maximum age for inclusion (i.e., no restrictions, 0-2, <8, 0-21); (2) limits on the length of time one could be served by the waiver (no limit, 3 years); (3) individual cost limits (i.e., dollar limits that individuals were not allowed to exceed based on level of service designations or estimated institutional costs); (4) geographic exclusions; (5) limits on the amount, frequency or duration of specific services; (6) the maximum number of participants that could be served in a year (30 – 110,000); (7) state estimated cost of services ($6,295-$161,040), and (8) specific services offered to children with ASD (ABA to respite only).
Conclusions:
HCBS waivers for children with ASD are very complex and are not consistent within or across states. As states and advocacy groups continue to develop these programs to facilitate access to care for individuals with ASD, understanding and evaluating current programs is critically important. Further efforts are needed to examine the characteristics of these programs that are associated with improved access to care and clinical outcomes to maximize the benefits of these programs to individuals with ASD and their families.