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Journal of Autism and Developmental Disorders

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28-01-2019 | OriginalPaper

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

Auteurs: Karen Goldrich Eskow, Gregory S. Chasson, Jean Ann Summers

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 5/2019

Abstract

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.

vorige artikel Informant Discrepancies in the Assessment of Adaptive Behavior of Children with Autism Spectrum Disorder

volgende artikel “I Would Like for My Child to be Happy with His Life”: Parental Hopes for Their Children with ASD Across the Lifespan

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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.

Baghdadli, A., Pry, R., Michelon, C., & Rattaz, C. (2014). Impact of autism in adolescents on parental quality of life. Quality of Life Research. 23(6), 1859–1868. https://doi.org/10.1007/s11136-014-0635-6. CrossRefPubMed

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. CrossRefPubMedPubMedCentral

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. CrossRefPubMed

Benson, P. R. (2012). Network characteristics, perceived social support, and psychological adjustment in mothers of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 42(12), 2597–2610. https://doi.org/10.1007/s10803-012-1517-9. CrossRefPubMed

Benson, P. R., & Karlof, K. L. (2009). Anger, stress proliferation, and depressed mood among parents of children with ASD: A longitudinal replication. Journal of Autism and Developmental Disorders, 39, 350–362. https://doi.org/10.1007/s10803-008-0632-0. CrossRefPubMed

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. CrossRefPubMed

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.

Cidav, Z., Marcus, S. C., & Mandell, D. S. (2014). Home- and community-based waivers for children with autism: Effects on service use and costs. Journal of Intellectual and Developmental Disabilities, 52(4), 239–248. https://doi.org/10.1352/1934-9556-52.4.239. CrossRefPubMed

Cohrs, A. C., & Leslie, D. L. (2017). Depression in parents of children with autism spectrum disorders: A claims-based analysis. Journal of Autism and Developmental Disorders, 47, 1416–1422. https://doi.org/10.1007/s10803-017-3063-y. CrossRefPubMed

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.

Eskow, K. G., Chasson, G. S., & Summers, J. A. (2015). A cross-sectional study of a large, statewide Medicaid home and community-based services autism waiver program. Journal of Autism and Developmental Disorders, 45(3), 626–635. https://doi.org/10.1007/s10803-014-2217-4 CrossRefPubMed

Eskow, K., Pineles, L., & Summers, J. A. (2011). Exploring the effect of autism waiver services on family outcomes. Journal of Policy and Practice in Intellectual Disabilities, 8(1), 28–35. https://doi.org/10.1111/j.1741-1130.2011.00284.x. CrossRef

Eskow, K. G., & Summers, J. A. (2018). Perceptions of a home and community based autism waiver: Making family life possible. Journal of Applied Research in Intellectual Disabilities, 32, 159–171. https://doi.org/10.1111/jar12518. CrossRefPubMed

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. CrossRef

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. CrossRefPubMed

Gadow, K. D., & Sprafkin, J. (2002). Child symptom inventory-4 screening and norms manual. Stony Brook: Checkmate Plus.

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.

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. CrossRefPubMedPubMedCentral

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. CrossRefPubMed

Heller, T., & Caldwell, J. (2005). Impact of a consumer-directed family support program on reduced out-of-home institutional placement. Journal of Policy and Practice in Intellectual Disabilities, 2(1), 63–65. https://doi.org/10.1111/j.1741-1130.2005.00010.x. CrossRef

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.

Hill, E. L., Jones, A. P., Lang, J., Yarker, J., & Patterson, A. (2014). Employment experiences of parents of children with ASD or ADHD: An exploratory study. International Journal of Developmental Disabilities, 61(3), 166–176. https://doi.org/10.1179/2047387714Y.0000000037. CrossRef

Hoffman, L., Marquis, J., Poston, D., Summers, J., & Turnbull, A. (2006). Assessing family outcomes: Psychometric evaluation of The Beach Center Family Quality of Life Scale. Journal of Marriage and Family, 68(4), 1069–1083. https://doi.org/10.1111/j.1741-3737.2006.00314.x. CrossRef

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. CrossRef

Howlin, P., & Asgharian, A. (1999). The diagnosis of autism and asperger syndrome: Findings from a survey of 770 families. Developmental Medicine and Child Neurology, 41, 834–839. https://doi.org/10.1017/S0012162299001656. CrossRefPubMed

Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, 45(2), 212–229. https://doi.org/10.1111/j.1469-7610.2004.00215.x. CrossRefPubMed

Karst, J. S., & Van Hecke, A. V. (2012). Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, 15(3), 247–277. https://doi.org/10.1007/s10567-012-0119-6. CrossRefPubMed

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. CrossRefPubMed

Lai, W. W., Goh, T. J., Oei, T. P. S., & Sung, M. (2015). Coping and well-being in parents of children with autism spectrum disorders (ASD). Journal of Autism and Developmental Disorders, 45, 2582–2593. https://doi.org/10.1007/s10803-015-2430-9. CrossRefPubMed

Lakin, K. C., Doljanac, R., Byun, S. Y., Stancliffe, R., Taub, S., & Chiri, G. (2008). Choice-making among Medicaid HCBS and ICF/MR recipients in six states. American Journal on Mental Retardation, 113(5), 325–342. https://doi.org/10.1352/2008.113.325-342. CrossRefPubMed

Lee, L., Harrington, R. A., Louie, B. B., & Newschaffer, C. J. (2008). Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38(6), 1147–1160. https://doi.org/10.1007/s10803-007-0491-0. CrossRefPubMed

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. CrossRef

Little, R. J. A., & Rubin, D. B. (1987). Statistical analysis with missing data. Hoboken: Wiley.

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. CrossRefPubMed

Matthews, R. A., Booth, S. M., Taylor, C. F., & Martin, T. (2011). A qualitative examination of the work-family interface: Parents of children with autism spectrum disorder. Journal of Vocational Behavior, 79(3), 625–639. https://doi.org/10.1016/j.vb.2011.04.010. CrossRef

Meadan, H., Halle, J. W., & Ebata, A. T. (2010). Families with children who have autism spectrum disorders: Stress and support. Exceptional Children, 77(1), 7–36. https://doi.org/10.1177/001440291007700101. CrossRef

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. CrossRef

Mugno, D., Ruta, L., D’Arrigo, V. G., & Mazzone, L. (2007). Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health and Quality of Life Outcomes, 5(1), 22. https://doi.org/10.1186/1477-7525-5-22. CrossRefPubMedPubMedCentral

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. CrossRefPubMedPubMedCentral

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. CrossRefPubMed

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 CrossRefPubMed

Pozo, P., Sarria, E., & Brioso, A. (2014). Family quality of life and psychological well-being in parents of children with autism spectrum disorders: A double ABCX model. Journal of Intellectual Disability Research, 58(5), 442–458. https://doi.org/10.1111/jir.12042. CrossRefPubMed

Preacher, K. J., & Kelley, K. (2011). Effect size measures for mediation models: Quantitative strategies for communicating indirect effects. Psychological Methods, 16(2), 93–115. https://doi.org/10.1037/a0022658. CrossRefPubMed

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. CrossRefPubMed

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.

Searing, B. M. J., Graham, F., & Grainer, R. (2015). Support needs of families living with children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(11), 3693–3702. https://doi.org/10.1007/s10803-015-2516. CrossRefPubMed

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. CrossRefPubMed

Shepherd, D., Csako, R., Landon, J., Goedeke, S., & Ty, K. (2018). Documenting and understanding parents’ intervention choices for their child with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48, 988–1001. https://doi.org/10.1007/s10803-017-3395-7. CrossRefPubMed

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. CrossRefPubMed

Sivberg, B. (2002). Family system and coping behaviors: A comparison between parents of children with autistic spectrum disorders and parents with non-autistic children. Autism, 6(4), 397–409. https://doi.org/10.1177/1362361302006004006. CrossRefPubMed

South Carolina Autism Society. (2011) PDD Program Parent’s Perspectives. Retrieved from: http://www.scautism.org/pdf/PDD%20Program%20Parents'%20Perspective.pdf.

Stokes, J., Pogge, D., Wecksell, B., & Zaccario, M. (2011). Parent-child discrepancies in report of psychopathology: The contributions of response bias and parenting stress. Journal of Personality Assessment, 93(5), 527–536. https://doi.org/10.1080/00223891.2011.594131. CrossRefPubMed

Stoner, C. R., & Stoner, J. B. (2014). How can we make this work? Understanding and responding to working parents of children with autism. Business Horizons, 57(1), 85–95. https://doi.org/10.1016/j.bushor.2013.10.002. CrossRef

Stuart, E. A. (2010). Matching methods for causal inference: A review and a look forward. Statistical Science, 25(1), 1–21. https://doi.org/10.1214/09-STS313. CrossRefPubMedPubMedCentral

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. CrossRefPubMed

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. CrossRefPubMed

Tint, A., & Weiss, J. A. (2016). Family wellbeing of individuals with autism spectrum disorder: A scoping review. Autism, 20(3), 262–275. https://doi.org/10.1177/1362361315580442. CrossRefPubMed

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.

Vasilopoulou, E., & Nisbet, J. (2016). The quality of life of parents of children with autism spectrum disorder: A systematic review. Research in Autism Spectrum Disorders, 23, 36–49. https://doi.org/10.1016/j.rasd.2015.11.008. CrossRef

Velott, D. L., Agbese, E., Mandell, D., Stein, B. D., Dick, A. W., Yu, H., & Leslie, D. L. (2016). Medicaid 1915 (c) Home-and Community-Based Services waivers for children with autism spectrum disorder. Autism, 20(4), 473–482. https://doi.org/10.1177/1362361315590806. CrossRefPubMed

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. CrossRefPubMed

Warfield, M. E., Chiri, G., Leutz, W. N., & Timberlake, M. (2014). Family well-being in a participant-directed autism waiver program: The role of relational coordination. Journal of Intellectual Disability Research, 58(12), 1091–1104. https://doi.org/10.1111/jir.12102. CrossRefPubMed

White, S. W., Schry, A. R., & Maddox, B. B. (2012). Brief report: The assessment of anxiety in high-functioning adolescents with autism spectrum disorder. Journal of Autism and Developmental Disorders, 42(6), 1138–1145. https://doi.org/10.1007/s10803-011-1353-3. CrossRefPubMed

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. CrossRefPubMed

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. CrossRefPubMedPubMedCentral

Titel: The Role of Choice and Control in the Impact of Autism Waiver Services on Family Quality of Life and Child Progress
Auteurs: Karen Goldrich Eskow
Gregory S. Chasson
Jean Ann Summers
Publicatiedatum: 28-01-2019
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 5/2019
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-019-03886-5

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