Over the past two decades, our response to children with developmental disabilities and their families has shifted dramatically, moving from an historical awareness of disability based in segregation and exclusion to one that favors the integration of people with disabilities into the mainstream of community life. Over this period, nearly all states have developed initiatives to provide families with a variety of supportive goods and services. This article explores the current status of family support in the United States, summarizing essential program features, program effects, and outstanding issues that must be addressed if the present momentum for family support is to be sustained.
Get full access to this article
View all access options for this article.
References
1.
AgostaJ. (1989). Using cash assistance to support family efforts. In SingerG. & IrvinL. (Eds.), Support for caregiving families: Enabling positive adaptation to disability (pp. 189–204). Baltimore: Paul H. Brookes.
2.
AgostaJ. (1992). Evaluating family support services: Two quantitative studies. In BradleyV.KnollJ., & AgostaJ. (Eds.), Emerging issues in family support (pp. 99–150). Washington, DC: American Association on Mental Retardation.
3.
AgostaJ., & MeldaK. (1995a). Results of a national survey to update the status of family support programs for children with developmental disabilities. Unpublished manuscript. Salem, OR: Human Services Research Institute.
4.
AgostaJ., & MeldaK. (1995b). Supplemental Security Income for children with disabilities: An exploration of child and family needs and the relative merits of the cash benefits program. Salem, OR: Human Services Research Institute.
5.
BraddockD.HempG.BachelderL., &BachelderR.FujiuraG. (1995). The state of the states in developmental disabilities. Washington, DC: American Association on Mental Retardation.
6.
BradleyV., & KnollJ. (1990). Shifting paradigms in services for persons with developmental disabilities. Cambridge, MA: Human Services Research Institute.
7.
BradleyV.KnollJ., & AgostaJ. (1992). Emerging issues in family support. Washington, DC: American Association on Mental Retardation.
8.
BrunerC. (1991). Thinking collaboratively: Ten questions and answers to help policymakers improve children's services. Des Moines, IA: Child and Family Policy Center. (ERIC Document Reproduction Service No. ED 338 984).
9.
CedarbaumJ., & MashawJ. (1995). Policies for children with disabilities: Connecticut, Virginia and some national trends (draft working paper). Washington, DC: National Academy of Social Insurance, Disability Policy Project.
10.
CovertS. (1995). Whatever it takes: Examples of excellence in family support. St. Augustine, FL: TRN.
11.
CraneW., & Skillings-GoffJ. (1988). Legal analysis of the feasibility of a cash assistance pilot project for family support. Cambridge: Massachusetts Developmental Disabilities Planning Council.
12.
DunstC.TrivetteC., & DealA. (1988). Enabling and empowering families: Principles and guidelines for practice. Cambridge, MA: Brookline Books.
13.
DunstC.TrivetteC.GordonN., & PletcherL. (1989). Building and mobilizing informal family support networks. In SingerG. & IrvinL. (Eds.), Support for caregiving families: Enabling positive adaptation to disability (pp. 121–142). Baltimore: Paul H. Brookes.
14.
DunstC.TrivetteC.StarnesA.HambyD., & GordonN. (1993). Building and evaluating family support initiative. Baltimore: Paul H. Brookes.
15.
DunstC.TrivetteC., & ThompsonR. (1990). Supporting and strengthening family functioning: Toward a congruence between principles and practice. Prevention in Human Services, 9(1), 19–43.
16.
GreidingerM.ParryJ.MooreD.BarronJ.BarteeD., & MessinaC. (1993). Avoiding pitfalls in the funding of family support services: An analysis prepared by the American Bar Association's Commission on Mental and Physical Disability Law. Washington, DC: American Bar Association.
17.
HenryA. (1991). Residential services for children with developmental disabilities. Minneapolis: Minnesota Disability Law Center.
18.
HermanS. (1991). Use and impact of a cash subsidy program. Mental Retardation, 29(5), 253–258.
19.
HobbsN.DokeckiP. R.Hoover-DempseyK. V.MoroneyR. M.ShayneM. W., & WeeksK. H. (1984). Strengthening families. San Francisco: Jossey-Bass.
20.
IrvinL. (1989). Evaluating family support programs. In SingerG. & IrvinL. (Eds.), Support for caregiving families: Enabling positive adaptation to disability (pp. 329–342). Baltimore: Paul H. Brookes.
21.
KnollJ.CovertS.OsuchR.O'ConnorS.AgostaJ., & BlaneyB. (1990). Family supports services: An end of decade status report. Cambridge, MA: Human Services Research Institute. (ERIC Document Reproduction Service No. ED 323 692).
22.
LoweP. (1993). Carepooling. San Francisco: Berret-Koehler.
23.
MarcenkoM., & MeyersJ. (1994). How families of children with severe disabilities choose to allocate a cash subsidy. The Journal of Mental Health Administration, 21(3), 253–261.
24.
MeldaK., & AgostaJ. (1992). Results of a national study of family support: Families do make a difference. Salem, OR: Human Services Research Institute.
25.
MeldaK., & AgostaJ. (1994). Family support services in Louisiana: A summary of survey results. Salem, OR: Human Services Research Institute.
26.
New Directions (NASMRPD). (1990). New Hampshire legislators strengthen family support. New Directions, 20(1), 1.
27.
Office of Technology Assessment, U.S. Congress (1987, May). Technology dependent children: Hospitals v. home care—A technical memorandum. (OTA-TM-H-38). Washington, DC: U.S. Government Printing Office. (ERIC Document Reproduction Service No. ED 303 949).
28.
RobisonS. (1990). Putting the pieces together: Survey of state systems for children in crisis. Denver, CO: National Conference of State Legislatures.
29.
SmithF. (1987). UCPA “Think Tank” identifies components of family support. Family Support Bulletin, 1, 4.
30.
TaylorS.KnollJ.LehrS.WalkerP. (1989). Families for all children: Value based services for children with disabilities and their families. In SingerG. & IrvinL. (Eds.), Support for caregiving families: Enabling positive adaptation to disability (pp. 41–53). Baltimore: Paul H. Brookes.
31.
TurnbullR.GarlowJ., & BarberP. (1991). A policy analysis of family support for families with members with disabilities. Kansas Law Review, 39, 739–782.
