Aging family caregivers: Policies and practices

Mental Retardation and Developmental Disabilities Research Reviews

Volumn 13, Issue 2, 2007, Pages 136-142

  Heller, Tamar ^a   Caldwell, Joe ^a   Factor, Alan ^a  

^a UNIVERSITY OF ILLINOIS AT CHICAGO   (United States)

Author keywords

Aging; Families; Family support

Indexed keywords

AGING; BEHAVIOR; CAREGIVER; DEVELOPMENTAL DISORDER; EMPLOYMENT; FAMILY; HEALTH STATUS; HUMAN; INCOME; INTELLECTUAL IMPAIRMENT; LIFE EXPECTANCY; MATERNAL CARE; MENTAL HEALTH; OUTCOMES RESEARCH; POLICY; PRIORITY JOURNAL; PROFESSIONAL PRACTICE; REVIEW; SOCIAL ASPECT; SUPPORT GROUP;

ADULT; AGING; CAREGIVERS; CHILD; DEVELOPMENTAL DISABILITIES; FAMILY; FAMILY HEALTH; FEDERAL GOVERNMENT; HEALTH SERVICES; HUMANS; PUBLIC POLICY; SOCIAL SUPPORT; STATE GOVERNMENT; UNITED STATES;

EID: 34447639981     PISSN: 10804013     EISSN: 10982779     Source Type: Journal    
DOI: 10.1002/mrdd.20138     Document Type: Review

References (96)

1. Abbeduto L, Seltzer MM, Shattuck P, et al. 2004. Psychological well-being and coping in mothers of youths with autism, Down syndrome, or fragile x syndrome. Am J Ment Retard 109:237-254.
2. Agosta J, Bradley V. 1985. Family care for persons with developmental disabilities: a growing commitment. Cambridge, MA: Human Service Research Institute.
3. Anderson L, Larson S, Lakin KC, et al. 2002. Children with disabilities: social roles and family impacts in the NHIS-D, DD Data Brief, Vol 4. Minneapolis, MN: Rehabilitation Research and Training Center on Community Living, University of Minnesota.
4. Beckman PJ. 1991. Comparison of mothers' and fathers' perceptions of the effect of young children with and without disabilities. Am J Ment Retard 95:585-595.
5. Benjamin AE, Franke TM, Matthias RE, et al. 1999. Consumer direction and in-home services: recipient perspectives on family and non-family service provision. J Rehab Adm 22:233-247.
6. Bittles A, Petterson B, Sullivan S, et al. 2002. The influence of intellectual disability on life expectancy. J Gerontol A Biol Sci Med Sci 57:470-472.
7. Blacher J, McIntyre LL. 2006. Syndrome specificity and behavioural disorders in young adults with intellectual disability: cultural differences in family impact. J Intellect Disabil Res 50:184-198.
8. Blacher J, Shapiro J, Lopez S, et al. 1997. Depression in Latina mothers of children with mental retardation: a neglected concern. Am J Ment Retard 101:483-496.
9. Botsford AL, Rule D. 2004. Evaluation of a group intervention to assist aging parents with permanency planning for an adult offspring with special needs. Soc Work 49:423-431.
10. Burnette D. 2000. Latino grandparents rearing grandchildren with special needs effect on depressive symptomatology. J Gerontol Soc Work 33:1-46.
11. Braddock D. 1999. Aging and developmental disabilities: demographic and policy issues affecting American families. Ment Retard 37: 155-161.
12. Braddock D, Hemp R, Rizzolo MC, et al. 2005. The state of the States in developmental disabilities. Boulder, CO: Coleman Institute for Cognitive Disabilities, University of Colorado.
13. Bruce EJ, Schultz CL. 1994. A cross-sectional study of parenting perceptions: caring for children with intellectual disability. Special issue: family caregiving. Australian J Mariiage Fam 15:56-65.
14. Caldwell J. 2005. Consumer-directed family support: Experiences of families with adult relatives with developmental disabilities. Doctoral Dissertation (Unpublished), University of Illinois at Chicago.
15. Caldwell, J. 2006. Consumer-directed supports: Economic, health, and social outcomes for families. Ment Retard 44:405-417.
16. Caldwell J, Heller T. 2003. Management of respite and personal assistance services in a consumer-directed family support programme. J Intellect Disabil Res 47:352-366.
17. Carter G, Jancar J. 1983. Mortality in the mentally handicapped: a 50 year study at the Stokes Park group of hospitals. J Mental Deficiency Res 27:143-156.
18. Chen SC, Ryan-Henry S, Heller T, et al. 2001. Health status of mothers of adults with intellectual disability. J Intellect Disabil Res 45: 439-449.
19. Dale S, Brown R, Phillips B, et al. 2005. Experiences of workers hired under cash and counseling: findings from Arkansas, Florida and New Jersey. Washington, DC: Office of Disability, Aging, and Long-Term Policy, Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services.
20. Data Resource Center for Child and Adolescent Health. 2005. Available at www.cshcndata.org
21. Doty P, Flanagan S. 2002. Highlights: Inventory of consumer-directed support programs. Washington, DC: Office of Disability, Aging and Long-Term Care Policy, U.S. Department of Health and Human Services.
22. Dye JL. 2005. Fertility of American women: June 2004, Current Population Reports P20-555. Washington, DC: U.S. Census Bureau.
23. Eiman M, Cuskelly M. 2002. Paid employment of mothers and fathers of adults with multiple disabilities. J Intellect Disabil Res 46:158-167.
24. Essex EL, Seltzer MM, Krauss MW. 1992. Aging fathers as caregivers for adult children with developmental disabilities. Presented at the National Institute on Aging Seminar on Men's Caregiving Roles in an Aging Society, Washington, DC.
25. Essex EL, Seltzer MM, Krauss, MW. 1999. Differences in coping effectiveness and well-being among aging mothers and fathers of adults with mental retardation. Am J Ment Retard 104:545-563.
26. Etmanski A. 1997. Safe and secure: six steps to creating a personal future plan for people with disabilities. Burnaby, British Columbia: Planned Lifetime Advocacy Network.
27. Feinberg LF, Wolkowitz K, Goldstein C. 2006. Ahead of the curve: emerging trends and practices in family caregiver support. National Center on Caregiving Family Caregiver Alliance. AARP.
28. Foster L, Brown R, Phillips B, et al. 2005. Easing the burden of caregiving: the impact of consumer direction on primary informal caregivers in Arkansas. Gerontologist 45:474-485.
29. Freedman R, Krauss M, Seltzer M. 1997. Aging parents' residential plans for adults with mental retardation. Ment Retard 35:114-123.
30. Fujiura GT. 1998. Demography of family households. Am J Ment Retard 103:225-235.
31. Fujiura GT, Roccoforte JA, Braddock D. 1994. Costs of family care for adults with mental retardation and related developmental disabilities. Am J Ment Retard 99:250-261.
32. Gordon RM, Seltzer MM, Krauss MW. 1996.The aftermath of parental death: changes in the context and quality of life. In: Schalock RL, editor. Quality of life: its applications to persons with disabilities. Washington, DC: American Association on Mental Retardation. p 23-40.
33. Greenberg JS, Seltzer MM, Krauss MW, et al. 1997. The differential effects of social support on the psychological well-being of aging mothers of adults with mental illness or mental retardation. Fam Relat 46:383-394.
34. Greenberg JS, Seltzer MM, Orsmond GI, et al. 1999. Siblings of adults with mental illness or mental retardation: current involvement and expectation of future caregiving. Psychiatr Serv 50:1214-1219.
35. Hallum A, Krumboltz JD. 1993. Parents caring for young adults with severe physical disabilities: psychological issues. Dev Med Child Neurol 35:24-32.
36. Heller T, Caldwell J. 2005. Impact of a consumer-directed family support program on reduced out-of-home institutional placement. J Pol Pract Intellect Disabil 2:63-65.
37. Heller T, Caldwell J. 2006. Supporting aging caregivers and adults with developmental disabilities in future planning. Ment Retard 44: 189-202.
38. Heller T, Factor A. 1988. Permanency planning among black and white family caregivers of older adults with mental retardation. Ment Retard 26:201-208.
39. Heller T, Factor A. 1993. Aging family caregivers: support resources and changes in burden and placement desire. Am J Ment Retard 98: 417-426.
40. Heller T, Hsieh K, Rowitz L. 1997a. Maternal and paternal caregiving of persons with mental retardation across the life-span. Fam Relat 46:407-416.
41. Heller T, Hsieh K, Rowitz L. 2000. Grandparents as supports to mothers of persons with intellectual disability. J Gerontol Soc Work 33: 23-34.
42. Heller T, Kramer J. 2006. Involvement of adult siblings of people with disabilities in future planning. Chicago: University of Illinois at Chicago.
43. Heller T, Markward R, Rowitz L, et al. 1994. Adaptation of Hispanic families to a member with mental retardation. Am J Ment Retard 99:289-300.
44. Heller T, Miller AB, Factor A. 1997b. Adults with mental retardation as supports to their parents: effects on parental caregiving appraisal. Ment Retard 35:338-346.
45. Heller T, Miller AB, Hsieh K. 1999. Impact of a consumer-directed family support program on adults with disabilities. Fam Relat 48: 419-427.
46. Herman SE. 1991. Use and impact of a cash subsidy program. Ment Retard 29:253-258.
47. Herman SE. 1994. Cash subsidy program: family satisfaction and need. Ment Retard 32: 416-421.
48. Hill-Smith AJ, Hollins SC. 2002. Mortality of parents of people with intellectual disabilities. J Appl Res Intellect Disabil 15: 18-27.
49. Ho A, Collins S, Davis K, et al. 2005. A look at working - age caregivers' roles, health concerns, and need for support. New York, NY: The Commonwealth Fund.
50. Hong J, Seltzer MM, Krauss MW. 2001. Change in social support and psychological well-being: a longitudinal study of aging adults with mental retardation. Fam Relat 50:154-163.
51. Kazak AE. 1987. Families with disabled children: stress and social networks in three samples. J Abnorm Child Psychol 15:137-146.
52. Kolomer S. 2000. Kinship foster care and its impact on grandmother caregivers. J Gerontol Soc Work 33:85-102.
53. Krauss MW, Seltzer MM, Goodman SJ. 1992. Social support networks of adults with retardation who live at home. Am J Ment Retard 96:432-441.
54. Krauss MW, Seltzer MM, Gordon R, et al. 1996. Binding ties: the roles of adult siblings of persons with mental retardation. Ment Retard 34:83-93.
55. Magana SM. 1999. Puerto Rican families caring for an adult with mental retardation: Role of familism. Am J Ment Retard 104:466-482.
56. Magana S, Seltzer MM, Krauss MW. 2004. Cultural context of caregiving: differences in depression between Puerto Rican and non-Latina White mothers of adults with mental retardation. Ment Retard 42:1-11.
57. Magana S, Seltzer MM, Krauss MW, et al. 2002. Well-being and family role strains among Cuban American and Puerto Rican mothers of adults with mental retardation. J Hum Behav Soc Environ 5:31-55.
58. Magana S, Smith, MJ. 2006. Health outcomes of midlife and older Latina and Black American mothers of children with developmental disabilities. Ment Retard 44:224-234.
59. Mahoney KJ, Desmond SM, Simon-Rusinowitz L, et al. 2002. Consumer-preferences for a cash option versus traditional services: telephone survey results from New Jersey elders and adults. J Disabil Pol Stud 13:74-86.
60. Martin JA, Hamilton BE, Ventura SJ, et al. 2002. Births: Final Data 2000. National Vital Statistics Report, Vol. 50. Hyatsvile, MD: National Center for Health Statistics.
61. McCallion P, Janicki MP, Grant-Griffin L, et al. 2000. Grandparent caregivers II: service needs and service provision issues. J Gerontol Soc Work 33:63-90.
62. Meyers JC, Marcenko MO. 1989. Impact of a cash subsidy program for families of children with severe developmental disabilities. Ment Retard 27:383-387.
63. National Family Caregiver Association. 2006. Pending legislation relating to family caregivers and their loved ones. Washington, DC: National Family Caregiver Association.
64. Orsmond GI, Selzer MM, Greenberg JS, et al. 2006. Mother-child relationship quality among adolescents and adults with autism. Am J Ment Retard 111:121-137.
65. Orsmond GI, Seltzer MM, Krauss MW, et al. 2003. Behavior problems in adults with mental retardation and maternal well-being: examination of the direction of effects. Am J Ment Retard 108:257-271.
66. Pandya SM, Wolkwitz K, Feinberg LF. 2006. Support for working family caregivers: paid leave policies in California and beyond. San Francisco, CA: Family Caregiver Alliance.
67. Parish S, Seltzer MM, Greenberg JS, et al. 2004. Economic implications of caregiving at mid-life: comparing parents with and without children who have developmental disabilities. Ment Retard 42:413-426.
68. Patja K, Iivanainen M, Vesala H, et al. 2000. Life expectancy of people with intellectual disability: a 35-year follow-up study. J Intellect Disabil Res 44:591-599.
69. Prouty RW, Smith G, Lakin KC. 2006. Residential services for persons with developmental disabilities: status and trends through 2005. Minneapolis: Research and Training Center on Community Living, University of Minnesota.
70. Pruchno RA. 2003. Enmeshed lives: adult children with developmental disabilities and their aging mothers. Psychol Aging 18:851-857.
71. Pruchno RA, McMullen WF. 2004. Patterns of service utilization by adults with a developmental disability: type of service makes a difference. Am J Ment Retard 109:362-361.
72. Pruchno RA, Patrick JH, Burant CJ. 1996. Aging women and their children with chronic disabilities: perceptions of sibling involvement and effects on well-being. Fam Relat 45: 318-326.
73. Rizzolo M, Hemp R, Braddock D. 2006. Family support services in the United States. Pol Res Brief 17:1-11.
74. Rossiter L, Sharpe D. 2001. The siblings of individuals with mental retardation: a quantitative integration of the literature. J Child Fam Stud 10:65-84.
75. Seltzer GB, Begun A, Seltzer MM, et al. 1991. Adults with mental retardation and their aging mothers: impacts on siblings. Fam Relat 40:310-317.
76. Seltzer MM, Greenberg JS, Floyd F, Pettee Y, Hong J. 1998. Life course impacts of parenting a child with a disability. Presented at the Annual Scientific Meeting of the Gerontological Society of America, Philadelphia, PA.
77. Seltzer MM, Greenberg JS, Floyd FJ, et al. 2001. Life course perspectives of parenting a child with a disability. Am J Ment Retard 106:265-286.
78. Seltzer MM, Krauss MW. 1989. Aging parents with adult mentally retarded children: family risk factors and sources of support. Am J Ment Retard 94:303-312.
79. Seltzer MM, Krauss MW. 1994. Aging parents with co-resident adult children: the impact of lifelong caregiving. In: Seltzer MM, Krauss MW, Janicki MP, editors. Life-course perspectives on adulthood and old age. Washington, DC: American Association on Mental Retardation. p. 3-18.
80. Simon-Rusinowitz L, Mahoney KJ, Loughlin DM, et al. 2005. Paying family caregivers: an effective option in the Arkansas cash and counseling demonstration and evaluation. In: Caputo RK, editor. Challenges of aging on U.S. families: policy and practice implications. Binghamton, NY: Haworth. p. 83-105.
81. Simon-Rusinowitz L, Mahoney KJ, Shoop DM, et al. 2001. Consumer and surrogate preferences for a cash option versus traditional services: Florida adults with developmental disabilities. Ment Retard 39:87-103.
82. Singer GHS. 2006. Meta-analysis of comparative studies of depression in mothers of children with and without developmental disabilities. Am J Ment Retard 11:155-169.
83. Stoneman Z. 2005. Siblings of children with disabilities: research themes. Ment Retard 43: 339-350.
84. Susa C, Clark P. 1996. Drafting a blueprint for change: coordinator's manual. Kingston, RI: University of Rhode Island.
85. Thompson L. 2004. Long-term care: support for family caregivers (Issue Brief). Washington, DC: Long-Term Care Financing Project, Georgetown University.
86. Townsend A, Noelker L, Deimling G, et al. 1989. Longitudinal impact of interhousehold caregiving on adult children's mental health. Psychol Aging 4:393-401.
87. U.S. Bureau of the Census. 2000. Summary File 3. Washington, DC: U.S. Department of Commerce.
88. U.S. Bureau of the Census. 2004. American Community Survey 2004. Washington, DC: U.S. Department of Commerce.
89. U.S. Bureau of the Census. 2004. Current Population Reports. American Community Survey, 2004. Washington, DC: U.S. Department of Commerce.
90. U.S. Bureau of the Census. 2004. Current Population Reports, Series P25-1104, Population projections of the United States by, age, sex, race, and Hispanic origin, 1993 to 2050. Washington, DC: U.S. Department of Commerce.
91. U.S. Bureau of the Census. 2004. Current Population Reports Series P25-1104, American Community Survey 2004. Washington, DC: U.S. Department of Commerce.
92. U.S. Department of Labor. 2005. Women in the Labor Force: A Data Book. Washington, DC: Bureau of Labor Statistics, U.S. Department of Labor.
93. U.S. Immigration and Naturalization Service. 2002. Yearbook of Immigration Statistics. Washington, DC: Office of Immigration Statistics.
94. Valentine DP, McDermott S, Anderson D. 1998. Mothers of adults with mental retardation: is race a factor in perceptions of burdens and gratifications? Fam Soc 79:577-584.
95. Zetlin AG. 1986. Mentally retarded adults and their siblings. Am J Ment Defic 91:217-225.
96. Zimmerman SL. 1984. The mental retardation family subsidy program: its effect on families with a mentally handicapped child. Fam Relat 33:105-118.