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.
- Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z.,… Dowling, N. F. (2018). Prevalence of autism spectrum disorder among children aged 8 years-autism and developmental disabilities monitoring network, 11 sites, United States, 2014. Morbidity and Mortality Weekly Report. Surveillance Summaries. 67(6), 1–23. https://doi.org/10.15585/mmwr.ss6706a1.Google Scholar
- Barrett, B., Mosweu, I., Jones, C. R., Charman, T., Baird, G., Simonoff, E.,… Byford, S. (2015). Comparing service use and costs among adolescents with autism spectrum disorders, special needs and typical development. Autism, 19(5), 562–569. https://doi.org/10.1177/1362361314536626.CrossRefGoogle Scholar
- Boehm, T. L., Carter, E. W., & Taylor, J. L. (2015). Family quality of life during the transition to adulthood for individuals with intellectual disability and/or autism spectrum disorders. American Journal on Intellectual and Developmental Disabilities, 120(5), 395–411. https://doi.org/10.1352/1944-7558-120.5.395.CrossRefGoogle Scholar
- Braddock, D. (2013). Intellectual and developmental disabilities services in the US: 2013. Boulder: University of Colorado Coleman Institute for Cognitive Disabilities. Retrieved from https://cybercemetery.unt.edu/archive/ltc/20130930213502/http:/ www.ltccommission.senate.gov/Braddock_PowerPointBraddock-LongTermCareCommission.pdf.
- Crisp, B. (2010). Catholic agencies: Making a distinct contribution to Australian social welfare provision?. Australasian Catholic Record, 87(4), 440–451. Retrieved from http://hdl.handle.net/10536/DRO/DU:30033047.
- Doljanac, R., Graybill, T., & Jenson, R. (2010). Stakeholders meetings on home and community-based waiver programs: Summary notes. Retrieved from https://dmh.mo.gov/docs/dd/stakeholders/stakeholderreport.pdf.
- Eiken, S., & Lelchook, S. (2013). Medicaid 1915(C) waiver data based on the CMS 372 report, 2009–2010. Retrieved from: http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Services-and-Support/Downloads/CMS-372-Report.pdf.
- Estes, A., Olson, E., Sullivan, K., Greenson, J., Winter, J., Dawson, G., & Munsen, J. (2013). Parenting-related stress and psychological distress in mothers of toddlers with autism spectrum disorders. Brain & Development. 35. 133–138. https://doi.org/10.1016/j.braindev.2012.10.004.CrossRefGoogle Scholar
- Fenton, S. J., Hood, H., Holder, M., May, P. B., & Mouradian, W. E. (2003). The American Academy of Developmental Medicine and Dentistry: Eliminating health disparities for individuals with mental retardation and other developmental disabilities. Journal of Dental Education, 67(12), 1337–1344. Retrieved from http://www.jdentaled.org/content/67/12/1337.
- Friedman, C., Lulinski, A., & Rizzolo, M. C. (2015). Mental/behavioral health services: Medicaid home and community-based services 1915 (c) waiver allocation for people with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 53(4), 257–270. https://doi.org/10.1352/1934-9556-53.4.257.CrossRefGoogle Scholar
- Gadow, K. D., & Sprafkin, J. (2002). Child symptom inventory-4 screening and norms manual. Stony Brook: Checkmate Plus.Google Scholar
- Garfinkle, A. N., Emerson, J., & Sturm, J. (2013). Montana’s children’s autism waiver (CAW) report: Initial outcomes of cohort one (Executive summary). Retrieved from http://www.pluk.org/centraldirectory/Autism/MT%20autism%20waiver/CAWfullreport-2013.pdf.
- Gilliam, J. E. (2014). Gilliam autism rating scale (3rd ed.). Austin: Pro-Ed.Google Scholar
- Gross, J. M. S. (2010). Identifying and defining the components and indicators of participant direction. ProQuest Dissertations and Theses, 124. Retrieved from https://search.proquest.com/docview/748816009.
- Hallett, V., Lecavalier, L., Sukhodolsky, D. G., Cipriano, N., Aman, M. G., McCracken, J. T., … Scahill, L. (2013). Exploring the manifestations of anxiety in children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(10), 2341–2352. https://doi.org/10.1007/s10803-013-1775-1.CrossRefGoogle Scholar
- Hayes, A. F. (2012). PROCESS: A versatile computational tool for observed variable mediation, moderation, and conditional process modeling [White paper]. Retrieved from http://www.afhayes.com/public/process2012.pdf.
- Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(3), 629–642. https://doi.org/10.1007/s10803-012-1604-y.CrossRefGoogle Scholar
- Heller, T., Miller, A. B., & Hsieh, K. (1999). Impact of a consumer-directed family support program on adults with developmental disabilities and their family caregivers. Family Relations, (4). 419–427. https://doi.org/10.2307/585250.
- Houser, L., McCarthy, M., Lawer, L., & Mandell, D. (2014). A challenging fit: Employment, childcare, and therapeutic support in families of children with autism spectrum disorders. Journal of Social Service Research. 40(5), 681–698. https://doi.org/10.1080/01488376.2014.930944.CrossRefGoogle Scholar
- Khanna, R., Madhavan, S. S., Smith, M. J., Patrick, J. H., Tworek, C., & Becker-Cottrill, B. (2011). Assessment of health-related quality of life among primary caregivers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 41(9), 1214–1227. https://doi.org/10.1007/s10803-010-1140-6.CrossRefGoogle Scholar
- Leslie, D. L., Iskandarani, K., Dick, A. W., Mandell, D. S., Yu, H., Verlott, D., & Stein, B. E. (2016). The effects of Medicaid home and community-based service waivers on unmet needs among children with autism spectrum disorder. Medical Care. 55. 57–63. https://doi.org/10.1097/MLR.0000000000000621.CrossRefGoogle Scholar
- Little, R. J. A., & Rubin, D. B. (1987). Statistical analysis with missing data. Hoboken: Wiley.Google Scholar
- Lu, M., Wang, G., Lei, H., Shi, M., Zhu, R., & Jiang, F. (2018). Social support as mediator and moderator of the relationship between parenting stress and life satisfaction among the Chinese parents of children with ASD. Journal of Autism and Developmental Disorders, 48, 1181–1188. https://doi.org/10.1007/s10803-017-3448-y.CrossRefGoogle Scholar
- Miller, N. A., Merryman, M. B., Eskow, K. G., & Chasson, G. S. (2016). State design and use of Medicaid 1915 (c) waivers and related benefits to provide services to children and youth with autism spectrum disorder. American Journal of Intellectual and Developmental Disabilities, 121(4), 295–311. https://doi.org/10.1352/1944-7558-121.4.295.CrossRefGoogle Scholar
- Olmstead v. LC. 527 U.S. 581. (1999). Retrieved from http://caselaw.findlaw.com/us-supreme-court/527/581.html.
- Ouyang, L., Grosse, S., Riley, C., Bolen, J., Bishop, E., Raspa, M., & Bailey, D. B. (2014). A comparison of family financial and employment impacts of fragile x syndrome, autism spectrum disorders, and intellectual disability. Research in Developmental Disabilities, 35(7), 1518–1527. https://doi.org/10.1016/j.ridd.2014.04.009.CrossRefGoogle Scholar
- Parish, S. L., Thomas, K. C., Williams, C. S., & Crossman, M. K. (2015). Autism and families’ financial burden: The association with health insurance coverage. American Journal on Intellectual and Developmental Disabilities, 120(2), 166–175. https://doi.org/10.1352/1944-7558-120.2.166.CrossRefGoogle Scholar
- Poston, D., Turnbull, A., Park, J., Mannan, H., Marquis, J., & Wang, M. (2003). Family quality of life: A qualitative inquiry. Mental Retardation. 41(5), 313–328. https://doi.org/10.1352/0047-6765(2003)41%3C313:FQOLAQ%3E2.0.CO;2 CrossRefGoogle Scholar
- Rosenbaum, P. R., & Rubin, D. B. (1983). The central role of the propensity score in observational studies for casual effects. Biometrika, 70(1), 41–55. Retrieved from: http://www.jstor.org/stable/2335942.
- Salomone, E., Leadbitter, K., Aldred, C., Barrett, B., Byford, S., Charman, T.,… Vamvakas, G. (2018). The association between child and family characteristics and the mental health and wellbeing of caregivers of children with autism in mid-childhood. Journal of Autism and Developmental Disorders, 48(4), 1189–1198. https://doi.org/10.1007/s10803-017-3392-x.CrossRefGoogle Scholar
- Scheffer, J. (2002). Dealing with missing data. Research Letters in the Information and Mathematical Sciences, 3(1), 153 – 60. Retrieved from http://hdl.handle.net/10179/4355.
- Seltzer, M. M., Krauss, M. W., Shattuck, P. T., Orsmond, G., Swe, A., & Lord, C. (2003). The symptoms of autism spectrum disorders in adolescence and adulthood. Journal of Autism and Developmental Disorders. 33(6), 565–581. https://doi.org/10.1023/B:JADD.0000005995.02453.0b.CrossRefGoogle Scholar
- Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008). Psychiatric disorders in children with autism spectrum disorders: Prevalence, comorbidity, and associated factors in a population-derived sample. Journal of the American Academy of Child and Adolescent Psychiatry. 47(8), 921–929. https://doi.org/10.1097/CHI.0b013e318179964f.CrossRefGoogle Scholar
- South Carolina Autism Society. (2011) PDD Program Parent’s Perspectives. Retrieved from: http://www.scautism.org/pdf/PDD%20Program%20Parents'%20Perspective.pdf.
- Sukhodolsky, D. G., Scahill, L., Gadow, K. D., Arnold, L. E., Aman, M. G., McDougle, C. J., … Vitiello, B. (2008). Parent-rated anxiety symptoms in children with pervasive developmental disorders: Frequency and association with core autism symptoms and cognitive functioning. Journal of Abnormal Child Psychology, 36(1), 117–128. https://doi.org/10.1007/s10802-007-9165-9.CrossRefGoogle Scholar
- Timberlake, M. T., Leutz, W. N., Warfield, M. E., & Chiri, G. (2014). “In the driver’s seat”: Parent perceptions of choice in a participant-directed Medicaid waiver program for young children with autism. Journal of Autism and Developmental Disorders, 44, 903–914. https://doi.org/10.1007/s10803-013-1942-4.CrossRefGoogle Scholar
- U.S. Department of Education, Office of Special Education and Rehabilitative Services. (2017). A transition guide to postsecondary education and employment for students and youth with disabilities. Retrieved from https://www2.ed.gov/about/offices/list/osers/transition/products/postsecondary-transition-guide-2017.pdf.
- Vohra, R., Madhavan, S., Sambamoorthi, U., & St Peter, C. (2014). Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions. Autism. 18(7), 815–826. https://doi.org/10.1177/1362361313512902.CrossRefGoogle Scholar
- White, S. W., Smith, L. A., & Schry, A. R. (2014). Assessment of global functioning in adolescents with autism spectrum disorders: Utility of the Developmental Disability–Child Global Assessment Scale. Autism, 18(4), 362–369. https://doi.org/10.1177/&%23x200C;1362361313481287.CrossRefGoogle Scholar
- Woodman, A. C., Smith, L. E., Greenberg, J. S., & Mailick, M. R. (2015). Change in autism symptoms and maladaptive behaviors in adolescence and adulthood: The roles of positive family processes. Journal of Autism and Developmental Disorders. 45, 111–126. https://doi.org/10.1007/s10803-014-2199-2.CrossRefGoogle Scholar