The Role of Choice and Control in the Impact of Autism Waiver Services on Family Quality of Life and Child Progress
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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.
KeywordsAutism services Medicaid Home and Community-Based Services Waiver Family quality of life
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.
KGE, PI for the NIDILRR funded grant that supported this initiative, provided conceptual and instrumental oversight contributing to all aspects of the article; facilitated the writing of the introduction, procedures, and discussion; contributed to study design, survey creation, methods sections; executed all collaborative activities necessary for review and publication of a manuscript completed by three authors. GSC facilitated study design, survey creation, and data collection; spearheaded data cleaning and data analysis; wrote drafts of the Methods and Results section; and assisted with other sections of the manuscript as needed. JAS, research consultant and qualitative expert contributed to each section of the manuscript; assisted with writing all sections, articulating and executing the conceptual model, survey creation, and study design.
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.
Compliance with Ethical Standards
Conflict of interest
The authors declare that they have no conflict of interest.
Research Involving Human Participants
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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