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Learning to Walk Slow: America's Partial Policy Success in the Arena of Intellectual Disability

Published online by Cambridge University Press:  27 April 2009

Harold Pollack
Harold Pollack
Affiliation:
School of Social Service Administration University of Chicago
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Extract

The history of policies affecting individuals with intellectual disabilities has received attention from social historians interested in gender and family, from the emerging discipline of disability studies, and from scholars interested in the evolving role of eugenic arguments and medical genetics in American life. That history has received less systematic study from the community of policy analysts and scholars traditionally concerned with welfare, poverty, and public health. This is unfortunate because the history of policies affecting intellectual disability offers at least three significant lessons.

Type
Articles
Information
Journal of Policy History , Volume 19 , Issue 1: Special Issue: New Perspectives on Public Health Policy , January 2007 , pp. 95 - 112
Copyright
Copyright © The Pennsylvania State University, University Park, PA. 2007

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References

Notes

1. Trent, James W., Inventing the Feeble Mind: A History of Mental Retardation in the United States (Berkeley and Los Angeles, 1994)Google Scholar. Trent provides the essential starting reference in the social history of intellectual disability. His narrative provides a starting point for this article, though Trent does not focus strongly on income support or public aid policies considered here.

2. Castellani, Paul J., From Snake Pits to Cash Cows (Albany, N.Y., 2005).Google Scholar

3. The citation to Pilgrim's Progress is given by Trent, Inventing the Feeble Mind. Herrnstein, Richard and Murray, Charles, The Bell Curve (New York, 1994).Google Scholar

4. Brockley, Janice A., “Rearing the Child Who Never Grew,” in Mental Retardation in America, ed. Noll, Steven and Trent, James W. (New York, 2004)Google Scholar; Bérubé, Michael, Life as We Know It: A Father, a Family, and an Exceptional Child (New York, 1996).Google Scholar

5. Heclo, Hugh, “The Political Foundations of Anti-Poverty Policy,” in Fighting Poverty: What Works and What Doesn't, ed. Danziger, Sheldon and Weinberg, Donald (Cambridge, Mass., 1986)Google Scholar. Weaver, R. Kent, Ending Welfare as We Know It (Washington, D.C., 2000).Google Scholar

6. Trent, Inventing the Feebl Mind.

7. Reilly, Philip, The Surgical Solution: A History of Involuntary Sterilization in the United States (Baltimore, 2001).Google ScholarPubMed

8. Jones, Kathleen W., “Education for Children with Mental Retardation,” in Mental Retardation in America, ed. Noll, Steven and Trent, James W..Google Scholar

9. This story is best told by Rothman, David J. and Rothman, Sheila M, The Willowbrook Wars (New York, 1984).Google Scholar

10. Richardson, Channing, “A Hundred-thousand Defectives,” Christian Century 23 (01 1946): 110–111Google Scholar. I encountered this account in Trent, Inventing the Feeble Mind.

11. Felicetti, David A., Mental Health and Retardation Politics (New York, 1975)Google Scholar. Conditions such as schizophrenia initially garnered the lion's share of NIMH expenditures.

12. Segal, Robert, The National Association for Retarded Citizens. Arc 1974 [cited 29 05 2006]. Available from http://www.thearc.org/history/segal.htm.Google Scholar

13. Braddock, David, Rizzolo, Mary C., Hemp, Richard, and Parish, Susan L., “Public Spending for Developmental Disabilities in the United States,” in Costs and Outcomes of Community Services for People with Developmental Disabilities, ed. Stancliffe, R. and Lakin, K. (Baltimore, 2005).Google Scholar

14. National Research Council, “Mental Retardation: Determining Eligibility for Social Security Benefits” (Washington, D.C., 2002).Google ScholarPubMed

15. None of the first-person caregiving accounts referenced in this article discuss public income-support programs for intellectually disabled persons, a telling reflection of the class position of those writing these accounts.

16. Buck, Pear S., The Child Who Never Grew. 2d ed. (Bethesda, Md., 1992).Google Scholar

17. Rogers, Dale Evans, Angel Unaware (Westwood, N.J., 1953)Google Scholar. See also Frank, Joseph, My Son's Story (New York, 1952)Google Scholar, and Tucker, Charlotte D., Betty Lee (New York, 1954)Google Scholar. For contrast, see Bérubé, Life as We Know It.

18. Janice A. Brockley, “Rearing the Child Who Never Grew.”

19. Other examples include Frank, My Son's Story and Tucker, Betty Lee.

20. Brockley, “Rearing the Child Who Never Grew.”

21. Levine, Carol, Always on Call: When Illness Turns Families into Caregivers (New York, 2000)Google Scholar; Pollack, Veronica P. and Pollack, Harold A, “Bringing Vincent Home,” Health Affairs 25, no. 1 (2006): 231–236.Google Scholar

22. This citation was drawn from Rose-Ackerman, Susan, “Mental Retardation and Society: The Ethics and Politics of Normalization,” Ethics 93, no. 1 (1982): 81–101.CrossRefGoogle Scholar

23. On such anxieties, see Reilly, Surgical Solution.

24. Strauss, David and Eyman, Richard K., “Mortality of People with Mental Retardation in California with and without Down Syndrome, 1986–1991,” American Journal of Mental Retardation 100, no. 6 (1991): 643–653.Google ScholarPubMed

25. Kathleen Castles, “Nice Average Parents,” in Mental Retardation in America, ed. Steven Noll and James W. Trent; Jones, “Education for Children with Mental Retardation.”

26. Brockley, “Rearing the Child Who Never Grew.”

27. Trent, Inventing the Feeble Mind; Segal, The National Association for Retarded Citizens.

28. Segal, The National Association for Retarded Citizens.

29. Cited in ibid.

30. Berkowitz, Edward D., Disabled Policy (Cambridge, 1987).Google ScholarPubMed

31. Taylor, Humphrey, Thirteenth Anniversary of the Americans with Disabilities Act (ADA). Harris Interactive 2003 [cited 07 12 2006]. Available from http://www.harrisinteractive.com/harris_poll/printerfriend/index.asp?PID=390.Google Scholar

32. Neal, David and Kirp, David L., “The Allure of Legalization Reconsidered: The Case of Special Education, Law and Contemporary Problems 48, no. 1 (1985): 63–87.CrossRefGoogle Scholar

33. Garrett, Bowen and Glied, Sherry, “Does State AFDC Generosity Affect Child SSI Participation? Journal of Policy Analysis and Management 19, no. 2 (2000): 275–295Google Scholar. The classic analysis of legal strategies is Melnick, R. Shep, Between the Lines: Interpreting Welfare Rights (Washington, D.C., 1994).Google Scholar

34. The Wall Street Journal features especially prominent coverage of intellectual disability. See, for example, Ansberry, Claire, “Disabled People Find Group Homes Can Be Broken, Too; Patients Gain Independence, but Oversight Is Spotty; Challenges of monitoring,” Wall Street Journal, 13 09 2005, 1Google Scholar. Amy D. Marcus, “Eli's Choice,” Wall Street Journal, 31 December 1.

35. US-DHHS, 2003 Annual Statistical Report on the Social Security Disability Insurance Program (Washington, D.C., 2004).Google Scholar

36. Braddock, Costs and Outcomes of Community Services for People with Developmental Disabilities.

37. Braddock, David, Hemp, Richard, Rizzolo, Mary C., Coulter, Diane, Haffer, Laura, and Thompson, Micah, The State of the States in Developmental Disabilities 2005 (Boulder, Colo., 2006).Google Scholar

38. Murray, Max A., “Needs of Parents of Mentally Retarded Children, American Journal of Mental Deficiency (05 1959).Google Scholar

39. Arc, , The Arc's Logo and Name Changes Throughout Its History 2006 [cited 05 29 2006]. Available from http://www.thearc.org/history/names.htm.Google Scholar

40. Seltzer, Marsha M, Krauss, Marty W, Hong, Jinkuk, and Orsmond, Gael I., “Continuity or Discontinuity of Family Involvement Following Residential Transitions of Adults Who Have Mental Retardation,” Mental Retardation 39, no. 3 (2001): 181–194.2.0.CO;2>CrossRefGoogle ScholarPubMed

41. Trent, Inventing the Feeble Mind; Tucker, Betty Lee; Buck, The Child Who Never Grew.

42. Zaslow, Jeffrey, “The Graduates: What Happens After Young Disabled Adults Leave School,” Wall Street Journal, 29 12 2005, A1.Google Scholar

43. Braddock, The State of the States in Developmental Disabilities.

44. Pollack and Pollack, “Bringing Vincent Home.”

45. Soss, Joe Brian, Unwanted Claims: The Politics of Participation in the U.S. Welfare Wystem (Ann Arbor, 2002).Google Scholar

46. Braddock, The State of the States in Developmental Disabilities.

47. This paragraph draws on Pollack and Pollack, “Bringing Vincent Home.”

48. Varnet, Theresa M., Special Needs Trust Ensures Support, Care (Chicago, 1998).Google Scholar

49. Ansberry, “Disabled People Find Group Homes Can Be Broken, Too.”

50. Goldstein, Avram and Boo, Katherine, “D.C. Vows Review of Deaths in Homes: Care of the Retarded to Face New Oversight,” Washington Post, 6 12 1999, 1.Google Scholar

51. Melnick, Between the Lines: Interpreting Welfare Rights.

52. Ibid.; Neal and Kirp, “The Allure of Legalization Reconsidered.”

53. Rothman and Rothman, Willowbrook Wars.

54. Skocpol, Theda, Protecting Soldiers and Mothers (Cambridge, Mass., 1995), 527–528.Google Scholar

55. Melnick, Between the Lines: Interpreting Welfare Rights.

56. Ibid.

57. Such problems are rarely addressed in academic research. If one searches Medline for the terms “developmental disability” and “representative payee,” one finds no article addressing intergenerational succession in caregiving.

58. See, for example, Jha, Ashish K., Perlin, Jonathan B., Kizer, Kenneth W., and Dudley, R. Adams, “Effect of the Transformation of the Veterans Affairs Health Care System on the Quality of Care,” New England Journal of Medicine 348, no. 22 (2003): 2218–27.CrossRefGoogle ScholarPubMed

59. Lakin, K. Charlie, Polister, Barbara, and Prouty, Robert W., “Wages of Non-state Direct Support Professionals Lag Behind Those of Public Direct Support Professionals and the General Public,” Mental Retardation 41, no. 2 (2003): 178–182.2.0.CO;2>CrossRefGoogle Scholar

60. Braddock, The State of the States in Developmental Disabilities.