The Politics of Autism includes an extensive discussion of insurance and Medicaid services for people with intellectual and developmental disabilities
Jessica Keim-Malpass, Leeza Constantoulakis, and Lisa C. Letzkus have an article at Health Affairs titled "Variability In States’ Coverage Of Children With Medical Complexity Through Home And Community-Based Services Waivers." The abstract:
Even though children with medical complexity represent less than 1 percent of the US pediatric population, they are among the costliest users of the health care system. Much of the care for these children is delivered in home and community-based settings and covered by Medicaid waivers under Section 1915(c). Expenditures related to these waivers have been steadily increasing, with most recent estimates showing spending that exceeds $48 billion per year. Little is known about these waivers’ economic impact or effectiveness, because their components and coverage have not previously been well defined. Our study addressed this paucity of data by analyzing the scope of coverage offered by the waivers and evaluating how states are using them to cover children with medical complexity. We found great variability in how states choose to interpret scope of coverage and services offered, and this variability may have an impact on child and family outcomes.From the article:
This analysis expanded upon the work performed by Douglas Leslie and colleagues 30–32
when they assessed Section 1915(c) waivers specifically for children with a diagnosis of autism spectrum disorder. As our study did, their work demonstrated that waivers targeting autism differ substantially across states in the types and breadth of services covered and restrictions (for example, cost containment strategies) used.30–32 When the authors applied service coverage as a predictor of child and family outcomes using
data from the National Survey of Children’s Health, they demonstrated that use of the waivers significantly decreased unmet needs for children with autism32 and that increases in cost limits and enrollment limits (that is, allowing more children to be covered by a waiver for longer amounts of time) significantly reduced the likelihood that a parent had to stop working.30 We broadened the analysis by including waivers for all children, and our findings can be used in a similar fashion to assess the relationship between waiver characteristics and child or family outcomes for all children with medical complexity. Furthermore, formal economic evaluations are needed to understand the impact and effectiveness of waiver coverage and characteristics on health and family-centered outcomes, at both the individual and state levels.
30 Leslie DL, Iskandarani K, Velott DL, Stein BD, Mandell DS, Agbese E, et al. Medicaid waivers targeting
children with autism spectrum disorder reduce the need for parents to stop working. Health Aff
31 Velott DL, Agbese E, Mandell D, Stein BD, Dick AW, Yu H, et al. Medicaid 1915(c) home- and community-based services waivers for children with autism spectrum disorder. Autism. 2016;20(4):473–82.
32 Leslie DL, Iskandarani K, Dick AW, Mandell DS,Yu H, Velott D, et al. The effects of Medicaid home and community-based services waivers on unmet needs among children with autism spectrum disorder. Med Care.