Health and access to health care of female family caregivers of adults with developmental disabilities

Journal of Disability Policy Studies

Volumn 19, Issue 2, 2008, Pages 68-79

  Caldwell, Joe ^a  

^a UNIVERSITY OF ILLINOIS AT CHICAGO   (United States)

Author keywords

Caregivers; Developmental disabilities; Family support; Health; Health care; Intellectual disabilities; Women's health

Indexed keywords

EID: 49749123897     PISSN: 10442073     EISSN: None     Source Type: Journal    
DOI: 10.1177/1044207308316093     Document Type: Article

References (62)

1. Abbeduto, L., Seltzer, M.M., Shattuck, P., Krauss, M.W., Orsmond, G., & Murphy, M.M. (2004). Psychological well-being and coping in mothers of youths with autism, Down syndrome, or fragile x syndrome. American Journal on Mental Retardation, 109, 237-254.
2. Altman, B.M., Cooper, P.F., & Cunningham, P.J. (1999). The case of disability in the family: Impact on health care utilization and expenditures for nondisabled members. Milbank Quarterly, 77, 39-74.
3. Arno, P. (2002). Well-being of caregivers: The economic issues of caregivers. Paper presented at the annual meeting of the American Association of Geriatric Psychiatry, Orlando, Florida.
4. Arno, P.S., Levine, C., Memmott, M.M. (1999). The economic value of informal caregiving. Health Affairs, 18, 182-188.
5. Bigby, C. (1997). Parental substitutes? The role of siblings in the lives of older people with intellectual disability. Journal of Gerontological Social Work, 29, 3-21.
6. Bigby, C. (2000). Moving on without parents: Planning, transitions and sources of support for middle-aged and older adults with intellectual disability. Baltimore, MD: Paul H. Brookes.
7. Blacher, J. (2001). Transition to adulthood: Mental retardation, families, and culture. American Journal on Mental Retardation, 106, 173-188.
8. Blacher, J., & McIntyre, L.L. (2006). Syndrome specificity and behavioural disorders in young adults with intellectual disability: Cultural differences in family impact. Journal of Intellectual Disability Research, 50, 184-198.
9. Blacher, J., Shapiro, J., Lopez, S., Diaz, L., & Fusco, L. (1997). Depression in Latina mothers of children with mental retardation: A neglected concern. American Journal on Mental Retardation, 101, 483-496.
10. Braddock, D. (1999). Aging and developmental disabilities: Demographic and policy issues affecting American families. Mental Retardation, 37, 155-161.
11. Braddock, D., Hemp, R., Rizzolo, M.C., Coulter, D., Haffer, L., & Thompson, M. (2005). The state of the states in developmental disabilities. Boulder: Coleman Institute for Cognitive Disabilities, University of Colorado.
12. Brett, K.M., & Hayes, S.G. (2004). Women's health and mortality chartbook. Washington, DC: Department of Health and Human Services Office on Women's Health.
13. Caldwell, J. (2006). Consumer-directed supports: Economic, health, and social opportunities. Mental Retardation, 44 (6). 405-417.
14. Caldwell, J., & Heller, T. (2003). Management of respite and personal assistance services in a consumer-directed family support programme. Journal of Intellectual Disability Research, 47, 352-366.
15. Chen, S.C., Ryan-Henry, S., Heller, T., & Chen, E.H. (2001). Health status of mothers of adults with intellectual disability. Journal of Intellectual Disability Research, 45, 439-449.
16. Dowling, M., & Dolan, L. (2001). Families and children with disabilities-Inequalities and the social model. Disability & Society, 16, 21-35.
17. Eiman, M., & Cuskelly, M. (2002). Paid employment of mothers and fathers of an adult with multiple disabilities. Journal of Intellectual Disability Research, 46, 158-167.
18. Foster, L., Brown, R., Phillips, B., & Carlson, B.L. (2005). Easing the burden of caregiving: The impact of consumer direction on primary informal caregivers in Arkansas. The Gerontologist, 45, 474-485.
19. Freedman, R., Krauss, M., & Seltzer, M. (1997). Aging parents' residential plans for adults with mental retardation. Mental Retardation, 35, 114-123.
20. Fujiura, G.T. (1998). Demography of family households. American Journal on Mental Retardation, 103, 225-235.
21. Fujiura, G.T. (2000). Implications of emerging demographics: A commentary of race and income inequity to disability policy. Journal of Disability Policy Studies, 11, 66-75.
22. Fujiura, G.T., Roccoforte, J.A., & Braddock, D. (1994). Costs of family care for adults with mental retardation and related developmental disabilities. American Journal on Mental Retardation, 99, 250-261.
23. Glidden, L.M., & Schoolcraft, S.A. (2003). Depression: Its trajectory and correlates in mothers rearing children with intellectual disability. Journal of Intellectual Disability Research, 47, 250-263.
24. Greenberg, J.S., Seltzer, M.M., Krauss, M.W., & Kim, H. (1997). The differential effects of social support on the psychological well-being of aging mothers of adults with mental illness or mental retardation. Family Relations, 46, 383-394.
25. Hanson, K., Neuman, T., & Dutwin, D., & Kasper, J.D. (2003). Uncovering the health challenges facing people with disabilities: The role of health insurance. Health Affairs, W3, 552-556.
26. Haveman, M., van Berkum, G., Reijnders, R., & Heller, T. (1997). Differences in service needs, time demands, and caregiving burden among parents of persons with mental retardation across the life cycle. Family Relations, 46, 417-425.
27. Heller, T. (1998). Aging with intellectual disabilities and later-life family caregiving. In B. A. Edelstein (Ed.), Comprehensive clinical psychology, Vol. 7: Clinical geropyschology (pp. 327-347). Oxford, UK: Pergamon / Elsevier.
28. 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, 63-65.
29. Heller, T., & Caldwell, J. (2006). Supporting aging caregivers and adults with developmental disabilities in future planning. Mental Retardation, 44, 189-202.
30. Heller, T., & Factor, A. (1991). Permanency planning for adults with mental retardation living with family caregivers. American Journal on Mental Retardation, 96, 163-176.
31. Heller, T., & Factor, A. (1993). Aging family caregivers: Support resources and changes in burden and placement desire. American Journal on Mental Retardation, 98, 417-426.
32. Heller, T., Miller, A.B., & Factor, A. (1997). Adults with mental retardation as supports to their parents: Effects on parental caregiving appraisal. Mental Retardation, 35, 338-346.
33. Heller, T., Miller, A.B., & Hsieh, K. (1999). Impact of a consumer-directed family support program on adults with disabilities. Family Relations, 48, 419-427.
34. Heller, T., Rowitz, L., & Farber, B. (1992). The domestic cycle of families of persons with mental retardation. Chicago: University of Illinois Affiliated Program in Developmental Disabilities and School of Public Health.
35. Hong, J., Seltzer, M.M., & Krauss, M.W. (2001). Change in social support and psychological well-being: A longitudinal study of aging adults with mental retardation. Family Relations, 50, 154-163.
36. Janicki, M., McCallion, P., Force, L., Bishop, K., & LePore, P. (1998). Area agency on aging outreach and assistance models for households with older carers of an adult with a disability. Journal of Aging and Social Policy, 10, 13-36.
37. Johnson, C., & Catalano, D. (1983). A longitudinal study of family supports to impaired elderly. The Gerontologist, 23, 612-618.
38. Kaiser Commission on Medicaid and the Uninsured. (2006). Deficit Reduction Act of 2005: Implications for Medicaid. Washington, DC: Author.
39. Magana, S.M. (1999). Puerto Rican families caring for an adult with mental retardation: Role of familism. American Journal on Mental Retardation, 104, 466-482.
40. Magana, S., Seltzer, M.M., & Krauss, M.W. (2004). Cultural context of caregiving: Differences in depression between Puerto Rican and non-Latina white mothers of adults with mental retardation. Mental Retardation, 42, 1-11.
41. Magana, S., & Smith, M.J. (2006). Health outcomes of midlife and older Latina and Black American mothers of children with developmental disabilities. Mental Retardation, 44, 224-234.
42. McCubbin, H.I., & Patterson, J. (1983). Family stress and adaptation to crises: A double ABCX model of family behavior. In H. McCubbin, M. Sussman, & J. Patterson (Eds.), Social stresses and the family: Advances and developments in family stress theory and research (pp. 7-37). Binghamton, NY: Haworth.
43. National Council on Disability. (2004). Consumer-directed health care: How well does it work? Washington, DC: Author.
44. Oliver, M. (1996). Understanding disability: From theory to practice. New York: St. Martin 's.
45. Olsson, M.B., & Hwang, C.P. (2001). Depression in mothers and fathers of children with intellectual disability. Journal of Intellectual Disability Research, 45, 535-543.
46. Orsmond, G., & Seltzer, M. (2000). Brothers and sisters of adults with mental retardation: Gendered nature of the sibling relationship. American Journal on Mental Retardation, 105, 486-508.
47. Orsmond, G.I., Seltzer, M.M., Krauss, M.W., & Hong, J. (2003). Behavior problems in adults with mental retardation and maternal well-being: Examination of the direction of effects. American Journal on Mental Retardation, 108, 257-271.
48. Parish, S.L., Seltzer, M.M., Greenberg, J.S., & Floyd, F. (2004). Economic implications of caregiving at midlife: Comparing parents with and without children who have developmental disabilities. Mental Retardation, 42, 413-426.
49. Prouty, R., Smith, G., & Lakin, K.C. (2005). Residential services for persons with developmental disabilities: Status and trends through 2004. Minneapolis: University of Minnesota, Research and Training Center on Community Living / Institute on Community Integration.
50. Pruchno, R.A., Patrick, J.H., & Burant, C.J. (1996). Aging women and their children with chronic disabilities: Perceptions of sibling involvement and effects on well-being. Family Relations, 45, 318-326.
51. Pruchno, R.A., Patrick, J.H., & Burant, C.J. (1997). African American and white mothers of adults with chronic disabilities: Caregiving burden and satisfaction. Family Relations, 46, 335-346.
52. Rizzolo, M., Hemp, R., & Braddock, D. (2006). Policy research brief: Family support services in the United States. Minneapolis, MN: Research and Training Center on Community Living, University of Minnesota.
53. Salganicoff, A., Ranji, U., & Wyn, R. (2005). Women and health care: A national profile. Washington, DC: Henry J. Kaiser Family Foundation.
54. Seltzer, G.B., Begun, A., Seltzer, M.M., & Krauss, M.W. (1991). Adults with mental retardation and their aging mothers: Impacts on siblings. Family Relations, 40, 310-317.
55. Seltzer, M.M., Greenberg, J.S., Floyd, F.J., Pettee, Y., & Hong, J. (2001). Life course perspectives of parenting a child with a disability. American Journal on Mental Retardation, 106, 265-286.
56. Seltzer, M.M., & Krauss, M.W. (1994). Aging parents with co-resident adult children: The impact of lifelong caregiving. In M. M. Seltzer, M. W. Krauss, & M. P. Janicki (Eds.), Life course perspectives on adulthood and old age (pp. 3-18). Washington, DC: American Association on Intellectual and Developmental Disabilities.
57. Singer, G.H.S. (2006). Meta-analysis of comparative studies of depression in mothers of children with and without developmental disabilities. American Journal on Mental Retardation, 11, 155-169.
58. Townsend, A., Noekler, L., Deimling, G., & Bass, D. (1989). Longitudinal impact of interhousehold caregiving on adult children's mental health. Psychology and Aging, 4, 393-401.
59. Ware, J.E., Jr., & Kosinski, M. (2001). SF-36 physical & mental summary scales: A manual for users of Version 1 (2 nd ed.). Lincoln, RI: Quality Metric.
60. Ware, J.E., Jr., Kosinski, M., & Gandek, B. (2000). SF-36 health survey: Manual and interpretation guide. Lincoln, RI: Quality Metric.
61. Wehmeyer, M.L. (1996). Self-determination as an educational outcome: Why is it important to children, youth and adults with disabilities? In D. J. Sands & M. L. Wehmeyer (Eds.), Self-determination across the life span: Independence and choice for people with disabilities (pp. 14-34). Baltimore, MD: Paul H. Brookes.
62. Wehmeyer, M.L., & Schwartz, M. (1998). The relationship between self-determination, quality of life, and life satisfaction for adults with mental retardation. Education and Training in Mental Retardation and Developmental Disabilities, 33, 3-12.