Medicaid 1915(c) Home and Community-Based Services Waivers for Children with Autism Spectrum Disorder

Insights Results

Overview of article

• Autism spectrum disorder (ASD) is a complex lifelong neuro-developmental disorder associated with repetitive behaviors, restricted interests and impairments in social communication that affects 1 in 68 children
• This white paper is the first review of 1915(c) HCBS waivers looking specifically at children with ASD across time, examining waiver availability, costs and restrictions, and documenting waiver inclusion of four core ASD services: respite, caregiver support and training, personal care and evidence-based treatment
• HCBS waivers allow states the flexibility to define populations by age, medical condition, and geographic location; limit the number of people who receive waiver services at any time; disregard income and resource rules that are used to determine Medicaid eligibility; and add services not already included in their state plans. In return for this flexibility, states are required to forego the customary state plan amendment process and submit a detailed application. Further, states must demonstrate that the costs of operating the waiver would not exceed the costs that would have been incurred if the waiver had not been available
  Methods
• Current HCBS waiver applications are maintained in a database on the Centers for Medicare and Medicaid Services (CMS) website. Applications range from 80 to 300 pages depending upon the target population and the number and breadth of services offered. Between April 2013 and January 2015, investigators examined each 1915(c) waiver application and selected for review all waivers that expressly included children with ASD as a target population. All other waivers were excluded from review. Once the authors identified eligible waivers, the goal was to review each one from inception (as early as 1981) onward, including all renewals and amendments approved over the years, in order to document changes that occurred over time. Investigators encountered three distinct waiver eras. Between 1981 and 1994, waiver applications were hand-typed, did not follow a uniform format, and contained minimal information. From 1995 to 2005, they were standardized paper-based applications containing basic information. Since 2006, CMS has made available a web-based application system that requires states to provide much more detail about their waivers
• When documents could not be found on the CMS website, because links were either broken or nonexistent for the years in question, investigators next searched state websites, contacted state waiver administrators by email and telephone, and queried CMS representatives. When available, CMS-issued waiver approval letters were used to confirm information and to gather additional details. More than 200 HCBS 1915(c) waiver-related documents were reviewed
• A data extraction tool was used to document waiver inclusions and restrictions, estimated service provision and institutional costs, and the inclusion of 4 core ASD services: respite, caregiver support and training, personal care, and evidence-based treatments

Results

• Investigators identified 50 current or former 1915(c) waivers (43 known to be in effect at time of review) across 29 states that explicitly included children with ASD. 13 states had more than 1 waiver
• Within states, waivers differed primarily by the number of individuals served, the targeted population (age and/or condition) and by the breadth of services offered (e.g., number of hours allowed per week). None of the waivers included fees for services or cost-sharing features. Waivers differed in substantively important ways, including 1) The populations targeted; 2) The estimated cost of services; 3) The cost control methods employed; and 4) The services covered
• Within the children’s ASD category, Maryland appears to offer the most comprehensive waiver. It is administered by the Maryland Department of Education, which enables better coordination of educational and Medicaid services. They offer all 4 of the core ASD services; include children of all ages; do not limit the length of time children can stay on the waiver; offer services to the largest number of children; have the longest running waiver; and, until 2014, the estimated annual cost of services per child appeared to be more generous than in any other state. However, the estimated annual cost of services under the Maryland waiver decreased by over $20,000 per child in 2014, corresponding to decreases in the amount of services offered

Key takeaways/implications

• The study highlights the considerable complexity and heterogeneity in Medicaid waivers for children with ASD. 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