Characterization of Family-Directed Care Coordination and Involvement in Behavioral Treatments in an Autism-Specific Medicaid Waiver.

Services for children with autism spectrum disorder (ASD) and their families have evolved with the advent of the Medicaid waiver, leading to more family-based coordination of care. Evaluating family involvement, the current investigation compared 230 families of children with ASD receiving Medicaid waiver services to a propensity-score matched group of 230 families who were waiting for such services (i.e., registry families). Compared to the registry, waiver families reported more involvement in service planning tasks, but not activities related to future-planning, managing crisis situations, or searching for and securing funding. Additional analyses characterize waiver families as engaging in high levels of coordinating and delivering behavioral interventions for their child. Implications for family burden and future programming for waiver programs are discussed.

The Role of Choice and Control in the Impact of Autism Waiver Services on Family Quality of Life and Child Progress.

Home and Community-Based Services (HCBS) Waivers provide support and services to families with a child/youth with autism spectrum disorder (ASD). Research indicates HCBS Waivers are positively related to family quality of life (FQoL) and Child Progress. This study replicated and expanded prior research using propensity score matching of 460 families. Results support prior findings that HCBS waivers have a positive impact on FQoL and aspects of child progress. This study also found that having choices in the selection of services and service providers, as well as control over day-to-day provision of services, strengthened both the child and family impacts of the Waiver services. In addition, the study provides preliminary evidence for psychometric properties of a quick and inexpensive parent-report of ASD severity.

Family perceptions of the impacts of a home and community based services autism waiver: Making family life possible.

BACKGROUND: An important mechanism that provides support and services for families with a child/youth with autism spectrum disorder is the home- and community-based services (HCBS) Waiver authorized by Section 1915(c) of the Social Security Act or Medicaid. METHODS: This study used qualitative research methods to explore parent perspectives about the impact of HCBS Waiver services on the child/youth with autism and their family. In-depth interviews focused on aspects of the programme they valued, identification of barriers and general issues they experienced. RESULTS: Results of the qualitative study indicated that improved outcomes could be explained by providers of services who were well-trained, flexible and allowed parents' opportunities for choice regarding provision of services to meet child/youth and family needs. CONCLUSION: The findings of this study provide guideposts for further research about factors that contribute to satisfaction of families receiving waiver services for quality of life and child progress.

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.

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.

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.