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.
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Note—families of individuals receiving services through the Maryland Autism Waiver program are compared to a group of families on the Registry which is a list of families interested receiving services through the Waiver program. The Waiver is approved to serve 1200 participants and is enrolled to capacity. The Registry is a list of those interested in applying for Waiver services when a vacancy occurs. Waiver participants must meet specific eligibility requirements.
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The authors wish to recognize the Maryland State Department of Education (MSDE) for their ongoing support of this project through grant funding and extensive collaboration. We are grateful to the families who have given so generously of their time to assist us with this project.
The contents of this article were developed under a grant funded by a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), Number H133G12003. Note: The findings/opinions of this paper are not necessarily the views of MSDE and do not necessarily represent the policy of the Department of Health and Human Services, Administration for Community Living, and you should not assume endorsement by the Federal Government.
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All procedures in this study involving human participants were in accordance with the ethical standards of the institution and national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Procedures were approved by the Institutional Review Board of the first author in compliance with governmental regulations, (detailed in title 45 of the Code of Federal Regulations, Part 46) with the use of human subjects.
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The Symptom Severity Scale is part of “Introduction” of the Autism Services and Supports: Impacts on Family Survey (ASIF). “Introduction” contains background and demographic information, and includes six questions asking parents to rate the degree of difficulty with functional skills:
Directions: Please consider your responses on a scale of 1–5 where 1 = Mild Difficulty and 5 = Severe Difficulty. Descriptions of each term (for example, independent living skills) are provided in the Glossary of Key Terms
Independent Living Skills
Social Communication and Interaction
Stereotypic and Repetitive Behavior
The Child Progress Scale, “Results” of the ASIF, includes identical items as the symptom severity index from “Introduction”. However, parents were asked to rate the amount of progress they perceived their child had made on these items:
Directions: In Part 1, you told us about the areas of difficulty your child has. Now we want you to tell us about the progress your child has made during the past 6 months. Please consider your response on a scale of 1–5 where 1 = Got a lot worse and 5 = Improved a lot.
During the past 6 months, my child’s
independent living skills…
social communication and interaction…
stereotypic and repetitive behavior…
© Autism Services and Supports: Impacts on Family Survey (ASIF). (Eskow et al. 2013, unpublished survey).
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Cite this article
Eskow, K.G., Chasson, G.S. & Summers, J.A. The Role of Choice and Control in the Impact of Autism Waiver Services on Family Quality of Life and Child Progress. J Autism Dev Disord 49, 2035–2048 (2019). https://doi.org/10.1007/s10803-019-03886-5
- Autism services
- Home and Community-Based Services Waiver
- Family quality of life