Longitudinal appraisals of family caregiving for people with disabilities enrolled in Medicaid managed care

References

• Reinhard SC, Fox-Grage W, Feinberg LF. Family caregivers in managed long-term services and supports. AARP Public Policy Institute; 2016.
   Google Scholar
• Kaye HS, Harrington C, LaPlante MP. Long-term care: who gets it, who provides it, who pays, and how much? Health Affairs. 2010;29:11–21.
   PubMed Web of Science ®Google Scholar
• National Alliance for Caregiving, AARP. Caregiving in the U.S. 2009. Washington (DC); 2009.
   Google Scholar
• Institute of Medicine. Retooling for an aging America: building the health care workforce. Washington (DC); 2008.
   Google Scholar
• Vitaliano PP, Young HM, Zhang J. Is caregiving a risk factor for illness? Curr Dir Psychol Sci. 2004;13:13–16.
   Web of Science ®Google Scholar
• Reinhard SC, Feinberg LF, Choula R. Valuing the invaluable: 2015 update. Insight on the Issues; 2015.
   Google Scholar
• Eiken S, Sredl K, Burwell B, et al. Medicaid expenditures for long-term services and supports (LTSS) in FY 2013: home and community-based services were a majority of LTSS spending. Truven Health Analytics; 2015.
   Google Scholar
• Grossman BR, Webb CE. Family support in late life: a review of the literature on aging, disability, and family caregiving. J Fam Soc Work. 2016;19:348–395.
   Web of Science ®Google Scholar
• Levine C, Halper D, Peist A, et al. Bridging troubled waters: family caregivers, transitions, and long-term care. Health Affairs. 2010;29:116–124.
   PubMed Web of Science ®Google Scholar
• Chiu C, Kyzar K, Zuna N, et al. Family quality of life. In: Wehmeyer ML, editor. The Oxford handbook of positive psychology and disability. New York (NY): Oxford University Press; 2013.
   Google Scholar
• Brennan EM, Rosenzweig JM, Brannan AM. Parents of young people with disabilities and their work-life challenges. Portland State University;2016.
   Google Scholar
• Samuel PS, Hobden KL, LeRoy BW, et al. Analysing family service needs of typically underserved families in the USA. J Intellect Disabil Res. 2012;56:111–128.
   PubMed Web of Science ®Google Scholar
• Brown RI, MacAdam-Crisp J, Wang M, et al. Family quality of life when there is a child with a developmental disability. J Policy Practice Intellect Disabil. 2006;3:238–245.
   Google Scholar
• Chen Y-M, Hedrick SC, Young HM. A pilot evaluation of the Family Caregiver Support Program. Eval Program Plann. 2010;33:113–119.
   PubMed Web of Science ®Google Scholar
• Caldwell J. Health and access to health care of female family caregivers of adults with developmental disabilities. J Disabil Policy Stud. 2008;19:68–79.
   Google Scholar
• Kyzar KB, Turnbull AP, Summers JA, et al. The relationship of family support to family outcomes: a synthesis of key findings from research on severe disability. Res Pract Pers Sev Disabil. 2012;37:31–44.
   Web of Science ®Google Scholar
• Heller T, Caldwell J. Supporting aging caregivers and adults with developmental disabilities in future planning. Ment Retard. 2006;44:189–202.
   PubMedGoogle Scholar
• Perlick DA, Straits-Troster K, Strauss JL, et al. Implementation of multifamily group treatment for veterans with traumatic brain injury. PS. 2013;64:534–540.
   Google Scholar
• Caldwell J, Heller T. Longitudinal outcomes of a consumer-directed program supporting adults with developmental disabilities and their families. Intellect Dev Disabil. 2007;45:161–173.
   PubMed Web of Science ®Google Scholar
• Heller T, Caldwell J. Impact of a consumer‐directed family support program on reduced out‐of‐home institutional placement. J Policy Practice in Intell Disabilities. 2005;2:63–65.
   Google Scholar
• Caldwell J. Consumer-directed supports: economic, health, and social outcomes for families. Ment Retard. 2006;44:405–417.
   PubMedGoogle Scholar
• Braddock DL, Hemp RE, Tanis ES, et al. The state of the states in intellectual and developmental disabilities. 11th ed. Washington (DC): American Association on Intellectual and Developmental Disabilities; 2017.
   Google Scholar
• Rizzolo MC, Friedman C, Lulinski-Norris A, et al. Home and Community Based Services (HCBS) Waivers: a nationwide study of the states. Intellect Dev Disabil. 2013;51:1–21.
   PubMed Web of Science ®Google Scholar
• 42. Sect. 441 (2014).
   Google Scholar
• Saucier P, Burwell B. Care coordination in managed long-term services and supports. Washington (DC): AARP Public Policy Institute; 2015.
   Google Scholar
• Feinberg LF. The dual pressures of family caregiving and employment. Washington (DC): AARP Public Policy Institute; 2016.
   Google Scholar
• Donelan K, Hill CA, Hoffman C, et al. Challenged to care: informal caregivers in a changing health system. Health Aff (Millwood). 2002;21:222–231.
   PubMed Web of Science ®Google Scholar
• Lepidus Carlson B, Foster L, Dale SB, et al. Effects of cash and counseling on personal care and well-being. Health Ser Res. 2007;42:467–487.
   PubMed Web of Science ®Google Scholar
• Hastings RP, Beck A, Hill C. Positive contributions made by children with an intellectual disability in the family. J Intellect Disabil. 2005;9:155–165.
   PubMedGoogle Scholar
• Stainton T, Besser H. The positive impact of children with an intellectual disability on the family. J Intellect Dev Disabil. 1998;23:57–70.
   Web of Science ®Google Scholar
• Heller T, Miller AB, Hsieh K. Impact of a consumer-directed family support program on adults with developmental disabilities and their family caregivers. Fam Relat. 1999;48:419–427.
   Web of Science ®Google Scholar
• Lawton MP, Moss M, Fulcomer M, et al. A research and service oriented multilevel assessment instrument. J Gerontol. 1982;37:91–99.
   PubMedGoogle Scholar
• Heller T, Markwardt R, Rowitz L, et al. Adaptation of Hispanic families to a member with mental retardation. Am J Ment Retard. 1994;99:289–300.
   PubMedGoogle Scholar
• Centers for Medicare & Medicaid Services. Medicaid managed care enrollment and program characteristics, 2016. 2018.
   Google Scholar
• Williamson HJ, Perkins EA, Acosta A, et al. Family caregivers of individuals with intellectual and developmental disabilities: experiences with Medicaid managed care long-term services and supports in the United States. J Policy Pract Intellect Disabil. 2016;13:287–296.
   Web of Science ®Google Scholar
• Taggart L, Truesdale-Kennedy M, Ryan A, et al. Examining the support needs of ageing family carers in developing future plans for a relative with an intellectual disability. J Intellect Disabil. 2012;16:217–234.
   PubMedGoogle Scholar
• Brehaut JC, Kohen DE, Raina P, et al. The health of primary caregivers of children with cerebral palsy: how does it compare with that of other canadian caregivers? Am Acad Pediatr. 2004;114:e182–e191.
   PubMed Web of Science ®Google Scholar
• Magaña S, Smith MJ. Health outcomes of midlife and older latina and black american mothers of children with developmental disabilities. Ment Retard. 2006;44:224–234.
   PubMedGoogle Scholar
• Murphy NA, Christian B, Caplin DA. The health of caregivers for children with disabilities: caregiver perspectives. Child Care Health Dev. 2006;33:180–187.
   Web of Science ®Google Scholar
• Tong HC, Haig AJ, Nelson VS, et al. Low back pain in adult female caregivers of children with physical disabilities. Arch Pediatr Adolesc Med. 2003;157:1128–1133.
   PubMed Web of Science ®Google Scholar
• Raina P, O'Donnell M, Schwellnus H, et al. Caregiving process and caregiver burden: conceptual models to guide research and practice. BMC Pediatr. 2004;4:1.
   PubMedGoogle Scholar
• Raina P, O'Donnell M, Rosenbaum P, et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics. 2005;115:e626–e636.
   PubMed Web of Science ®Google Scholar
• Foldes SS, Moriarty JP, Farseth PH, et al. Medicaid savings from The New York University caregiver intervention for families with dementia. The Gerontologist. 2018;58:e97–e106.
   PubMed Web of Science ®Google Scholar
• Totsika V, Hastings RP, Vagenas D. Informal caregivers of people with an intellectual disability in England: health, quality of life and impact of caring. Health Health Soc Care Commun. 2017;25:951–961.
   PubMed Web of Science ®Google Scholar
• Williamson HJ, Perkins EA. Family caregivers of adults with intellectual and developmental disabilities: outcomes associated with U.S. services and supports. Intellect Dev Disabil. 2014;52:147–159.
   PubMed Web of Science ®Google Scholar
• United Hospital Fund Next Step in Care. Assessing family caregivers: a guide for health care providers; 2008.
   Google Scholar
• Family Support Research and Training Center. Research on family caregiving support in the United States: a strategic plan; 2018.
   Google Scholar
• Calderon V, Tennstedt SL. Ethnic differences in the expression of caregiver burden: results of a qualitative study. J Gerontol Social Work. 1998;30:159–178.
   Web of Science ®Google Scholar
• Haley WE, Gitlin L, Wisniewski S, et al. Well-being, appraisal, and coping in African-American and Caucasian dementia caregivers: findings from the REACH study. Aging Ment Health. 2004;8:316–329.
   PubMed Web of Science ®Google Scholar
• Farran CJ, Miller BH, Kaufman JE, et al. Race, finding meaning, and caregiver distress. J Aging Health. 1997;9:316–333.
   PubMed Web of Science ®Google Scholar