The Effects of Medicaid Home and Community Based Services Waivers Targeting Children with Autism Spectrum Disorder (ASD) on Parental Employment

Background: Families of children with ASD often have greater challenges accessing services than families of children with many other special health care needs, frequently requiring at least one parent to reduce their hours worked or to stop working altogether in order to coordinate the care for their child with ASD. Many states have turned to Medicaid to help finance autism services, using Medicaid Home and Community-Based Services (HCBS) waivers both to expand eligibility for Medicaid-reimbursed services and to provide services not covered by their Medicaid plans.  Fifty current or former HCBS waivers in 29 states include children with ASD in their target population. However, little is known about how effective these programs are at allowing parents to stay in the workforce.

Methods: Data from the 2005/06 and 2009/10 waves of the National Survey of Children with Special Health Care Needs were used to determine whether a parent had to stop working because of the child’s health condition. Data describing state Medicaid HCBS waiver programs were collected from source materials submitted in support of waiver applications that explicitly target children with ASD between 2000 and 2014. The following measures characterizing waiver features were constructed: 1) Estimated cost, defined as the total annual estimated costs of waiver services per individual expected to participate in the waiver; 2) Cost limit, defined as the maximum cost of services allowed for individuals enrolled under the waiver; and 3) Enrollment limit, defined as the maximum number of participants that the waiver will serve, expressed as a proportion of the total number of children in the state.  Quasi-difference-in-difference-in-differences logistic regression models were used to determine the effects of waiver characteristics on the likelihood of a parent stopping work in families with a child with ASD compared to families with a child with asthma, controlling for other child and family characteristics and state fixed effects.

Results: A total of 18,239 families were included in the study, of which 2,731 had a child with ASD.  Families of children with ASD were much more likely to have a parent that stopped working compared to parents of children with asthma (OR 3.36, 95%CI: 2.39-4.72).  Waiver characteristics were strongly associated with risk of a parent of a child with ASD stopping work, with a 1-standard deviation increase in the cost limit being associated with an odds ratio of 0.77 (95%CI: 0.61-0.96).  However, the results differed considerably by household income, with waivers having large effects in households with incomes below 200% of the Federal poverty level (FPL) (in which 1-standard deviation increases in estimated cost, cost limit and enrollment limit were associated with odds ratios of 0.32 [95%CI: 0.17-0.59], 0.67 [95%CI: 0.55-0.80], and 0.87 [95%CI: 0.76-1.00], respectively), but few statistically significant effects in households with incomes over 400% FPL.

Conclusions: Waivers characteristics are significantly associated with reduced risk of parents of children with ASD stopping work, but only for low-income households.  More research is needed to identify ways to alleviate this burden in higher income households.