A critical analysis of the emerging crisis in long-term care for people with developmental disabilities

Social Work

Volumn 50, Issue 4, 2005, Pages 345-354

  Parish, Susan L ^a   Lutwick, Zachary E ^b  

^a UNIVERSITY OF NORTH CAROLINA   (United States)

^b Area Program   (United States)

Author keywords

Developmental disabilities; Family centered services; Long term care

Indexed keywords

ADOLESCENT; ADULT; AGED; AGING; ARTICLE; CAREGIVER; CHILD; CONSUMER ADVOCACY; DEVELOPMENTAL DISORDER; ECONOMICS; HEALTH SERVICE; HUMAN; LEGAL ASPECT; LONG TERM CARE; MIDDLE AGED; ORGANIZATION AND MANAGEMENT; SOCIAL WORK; UNITED STATES; UTILIZATION REVIEW;

ADOLESCENT; ADULT; AGED; AGING; CAREGIVERS; CHILD; CONSUMER ADVOCACY; DEVELOPMENTAL DISABILITIES; HEALTH SERVICES NEEDS AND DEMAND; HUMANS; LONG-TERM CARE; MIDDLE AGED; SOCIAL WORK; UNITED STATES;

EID: 34248610070     PISSN: 00378046     EISSN: 15456846     Source Type: Journal    
DOI: 10.1093/sw/50.4.345     Document Type: Article

References (57)

1. Agosta, J., & Melda, K. (1995). Supporting families who provide care at home for children with disabilities. Exceptional Children, 62, 271-282.
2. Americans with Disabilities Act of 1990 (ADA), P. L. 101-336, 104 Stat. 327.
3. Apgar, D. H., Lerman, P., & Jordan, T. (2003). Life after North Princeton Developmental Center. Newark, NJ: Developmental Disabilities Planning Institute, NJ Institute of Technology.
4. Braddock, D. (2002). The state of the states: Public policy toward disability at the dawn of the 21st century. Washington, DC: American Association on Mental Retardation.
5. Braddock, D., & Mitchell, D. (1992). Residential services and developmental disabilities in the United States. Washington, DC: American Association on Mental Retardation.
6. Bradley, V. J. (2000). Changes in services and supports for people with developmental disabilities: New challenges to established practice. Health & Social Work, 25, 191-200.
7. Bradley. V., Knoll, J., & Agosta, J. (1992). Emerging issues in family support. Washington, DC: American Association on Mental Retardation.
8. Bruns, E. J., & Burchard, J. D. (2000). Impact of respite care services for families with children experiencing emotional and behavioral problems. Children's Services: Social Policy, Research, & Practice, 3, 39-61.
9. Curran, A. L., Sharpies, P. M., White, C, & Knapp, M. (2001). Time costs of caring for children with severe disabilities compared with caring for children without disabilities. Developmental Medicine & Child Neurology, 43, 529-533.
10. Davis, L. A. (n. d.). People with mental retardation in the criminal justice system. Retrieved November 23, 2004, from http://www.thearc.org/faqs/ crimqa.html
11. DeBrine, E., Caldwell, J., Factor, A., & Heller, T. (2003). The future is now: A future planning training curriculum for families and their adult relatives with developmental disabilities. Chicago: University of Illinois at Chicago.
12. Denkowski, G. C., & Denkowski, K. M. (1985). The mentally retarded offender in the state prison system. Criminal Justice and Behavior, 12, 53-70.
13. Developmental Disabilities Assistance and Bill of Rights Act of 2000, 42 U. S. C. §15001 et seq. P. L.106-402.
14. Dybwad, G., & Bersani, H. (1996). Self-advocacy by people with disabilities. Cambridge, MA: Brookline Books.
15. Essex, E. L., Seltzer, M. M., & Krauss, M. W (1997). Residential transitions of adults with mental retardation. American Journal on Mental Retardation, 101, 613-629.
16. Floyd, F. J., & Gallagher, E. M. (1997). Parental stress, care demands, and use of support services for school-age children with disabilities and behavior problems. Family Relations, 46, 359-371.
17. Fox-Grage, W, Folkemer, D., & Lewis, J. (2003, February). The states' response to the Olmstead decision: How are states complying? Denver: National Conference of State Legislators.
18. Freedman, R. I., & Boyer, N. C. (2000). The power to choose: Supports for families caring for individuals with developmental disabilities. Health & Social Work, 25, 59-68.
19. Freedman, R. I., Griffiths, D., Krauss, M. W., & Seltzer, M. M. (1999). Patterns of respite use by aging mothers of adults with mental retardation. Mental Retardation, 37, 93-103.
20. Freedman, R., Krauss, M. W., & Seltzer, M. M. (1997). Aging parents' residential plans for adult children with mental retardation. Mental Retardation, 35, 114-123.
21. Fujiura, G. T. (1998). Demography of family households. American Journal on Mental Retardation, 103, 225-235.
22. Haveman, M., van Berkum, G., Reijinder, 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.
23. Hayden, M. F. (1997). Class action, civil rights litigation for institutionalized persons with mental retardation and other developmental disabilities. Mental & Physical Disability Law Reporter, 21, 411-423.
24. 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.
25. Heller, T., Hsieh, K., & Rowitz, L. (1997). Maternal and paternal caregiving of persons with mental retardation across the life-span. Family Relations, 46, 407-416.
26. 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, 48, 419-427.
27. Hooyman, N., & Gonyea, J. (1995). Feminist perspectives on family care: Policies for gender justice. Thousand Oaks, CA: Sage Publications.
28. Lakin, K. C. (1998). On the outside looking in: Attending to waiting lists in systems of services for people with developmental disabilities. Mental Retardation, 3 6, 157-162.
29. Larson, S. A., & Lakin, K. C. (1989). Deinstitutionalization of persons with mental retardation. Journal of the Association for Persons with Severe Handicaps, 14, 324-332.
30. Larson, S. A., & Lakin, K. C. (1991). Parent attitudes about residential placement before and after deinstitutionalization. Journal of the Association for Persons with Severe Handicaps, 16, 25-38.
31. Larson, S. A., Lakin, K. C., Anderson, L., Kwak Lee, N., Lee, J. H., & Anderson, D. (2001). Prevalence of mental retardation and developmental disabilities. American Journal on Mental Retardation, 106, 231-252.
32. Larson, S. A., Lakin, K. C., & Bruininks, R. H. (1998). Staff recruitment and retention: Study results and intervention strategies. Washington, DC: American Association on Mental Retardation.
33. Lee, R., & Skinner, J. (1999). Will aging baby boomers bust the federal budget? Journal of Economic Perspectives, 13, 117-140.
34. Makin et a1. v. State of Hawaii et a1., 114 F. Supp 2d 1017 (D. Haw 1999).
35. Meyers, J. C., & Marcenko, M. O. (1989). Impact of a cash subsidy program for families of children with severe developmental disabilities. Mental Retardation, 27, 383-387.
36. Minnesota Technical College Task Force. (1993). Educational opportunities for developmental disabilities service providers. St. Paul, MN: Governor's Planning Council on Developmental Disabilities.
37. National Association of Social Workers. (2000). People with disabilities. In Social work speaks: National Association of Social Work policy statements, 2000-2003 (pp. 244-249). Washington, DC: NASW Press.
38. Nelis, T, & Ward, N. (1995). Operation 'Close the Doors.' Impact, 9, 12.
39. Olmstead v. L. C. and E. W., 119 S. Ct. 2176 (1999).
40. Parish, S. L., Pomeranz-Essley, A. E., & Braddock, D. (2003). Family support in the United States: Financing trends and emerging initiatives. Mental Retardation, 41, 174-187.
41. Parish, S. L., Seltzer, M. M., Greenberg, J. S., & Floyd, F. J. (2004). Economic implications of caregiving at midlife. Mental Retardation, 42, 413-426.
42. People First of Tennessee v. Arlington Developmental Ctr., 878 F. Supp. 97 (W. D. Tenn. 1992), 19 MPDLR 445.
43. Prouty, R. W., Smith, G., & Lakin, K. C. (2003). Residential services for persons with developmental disabilities. Minneapolis: University of Minnesota, Research and Training Center on Community Living.
44. Racino, J. A., & Heumann, J. (1992, Winter). Independent living and community life: Building coalitions among elders, people with disabilities, and our allies. Generations, 16, 43-47.
45. Racino J. A., &Taylor, S. (1993). People first:Approaches to housing and support. In J. A. Racino, P. Walker, S. O'Connor, & S. Taylor (Eds.), Housing, support, and community: Choices and strategies for adults with disabilities (pp. 33-56). Baltimore: Brookes.
46. Roizen, N. J., & Patterson, D. (2003). Down's syndrome. The Lancet, 361, 1281-1289.
47. Seltzer, M. M., & Krauss, M. W. (2001). Quality of life of adults with mental retardation/developmental disabilities who live with family. Mental Retardation and Developmental Disabilities Research Reviews, 7, 105-14.
48. Smith, G. A. (2005, May 2). Status report: Litigation concerning home and community services for people with disabilities. Portland, OR: Human Services Research Institute.
49. Smith, G. A., & Gettings, R. M. (1994). The HCB Waiver and CSLA programs. Alexandria, VA: National Association of State Directors of Developmental Disabilities.
50. Smith, G. P. S., Thyer, B. A., Clements, C, & Kropf, N. P. (1997). An evaluation of coalition building training for aging and developmental disabilities service providers. Educational Gerontology, 23, 105-114.
51. Sobsey, D. (1994). Violence and abuse in the lives of people with disabilities: The end of silent acceptance? Baltimore: Brookes.
52. Taylor, S. J., Bogdan, R., & Racino J. A. (1991). Life in the community. Baltimore: Brookes.
53. U. S. Census Bureau. (2000). Projections of the resident population by age, Hispanic origin, and nativity: Middle series. Washington, DC: Author.
54. U. S. Census Bureau. (2002). U. S. summary. Washington, DC: Author.
55. U. S. Department of Health and Human Services. (2002, November 15). Notice. Federal Register, 67, 69223-69225.
56. Westmoreland, T. M., & Perez, T. (2000January 14). Letter to state Medicaid directors. Washington, DC: U. S. Department of Health and Human Services.
57. Yamaki, K., & Fujiura, G. T. (2002). Employment and income status of adults with developmental disabilities living in the community. Mental Retardation, 40, 132-141.