The Battle of the Intellectually Disabled for Jobs, Not Drugs: A Socialist versus Medicaid History

ABSTRACT

This article is about the economic rights of Washington, DC’s so-called “intellectually disabled.” They have a history of resisting being drugged up, unemployed and impoverished, in short of being the underdog members of the city’s working class. Structurally the essay proceeds in a chronological fashion which first sketches the historical background of the struggle beginning with the century-long period when there were city-owned training and full-employment programs and a labor theory of value philosophy that backed them up. Then follows the popular resistance to the growth, beginning in the 1970s of the eugenic-dominated Medicaid program. In the name of medical necessity, fiscally conservative members of DC City Council worked to abolish its publicly-owned and locally-financed factories and farms. The article’s final section highlights the resisters’ use of the DC Superior Court’s Mental Health and Habilitation Branch, as it played an important part in their fight for gainful employment, normal family relations and a limitation on the psychotropic and seizure medication which the city and its Medicaid contractors promoted as a substitute for employment and a meaningful life.

KEYWORDS:

• Intellectual disability history
• habilitation rights
• over-medicating
• full-employment
• people versus profit

Disclosure Statement

No potential conflict of interest was reported by the author.

Notes on Contributor

Toby Terrar is a member of the National Lawyers Guild and a disability advocate in Washington, DC. He is a graduate of the University of California, Los Angeles (UCLA), where he majored in history. He has published essays in Journal of San Diego History, Peace Review: A Journal of Social Justice and The Journal of Military History. His web page is http://www.angelfire.com/un/cwp/.

Notes

1. An earlier article (Terrar 2016) dwelt with the simultaneous battle in the US District Court around the long-running Evans v. Washington case. That litigation dealt with general policy issues, while the underdogs used the Habilitation Branch to defend themselves on a day-in, day-out, case-by-case basis involving more than 1,000 individuals over the span of their entire lives.

2. DC’s positive history of meeting employment needs is summarized in Terrar (2016, 2–12).

3. Carroll was the director of the National Institutes on Rehabilitation and Health Services (NIRHS) between 1960 and 1971. This was a federally-funded, labor union-backed advocacy organization.

4. Evans case began in 1976 in the Federal District Court and continued until 2016, being re-named a number of times, including Evans et al. v. Bowser, Civil Action 76–CV–00293 [D.D.C. 2015]. The case was patterned after the New York case, New York St. Ass’n for Retarded Child, Inc. v. Rockefeller, 357 F. Supp. 752 (1973). The New York case ended with a consent judgment that committed New York State to seek “community placement” for the 5,000 residents at the Willowbrook State School in Staten Island, New York.

5. It was renamed in 2006 as “Persons with Intellectual Disabilities Constitutional Rights and Dignity Act of 1978.” The proposed 1978 Act originated from the DC City Council and its Committee on Human Resources and Aging, which was chaired by DC city council member Polly Shackleton in 1978. About the legislation, law school professor Burgdorf (2010, 302) writes:

The legislation originated with Bill No. 2–108, introduced by Council member Arrington Dixon, which was a revision of an earlier version of such a bill that he had introduced in 1973.The version passed in 1978, however, was strongly influenced by the Evans Order issued that year.

6. Terrar (2016, 13) summarizes:

The activists in 1978 were not against private apartment and group homes. These had always been available. But a publicly-controlled institution that offered training and employment in multiple careers to large numbers with a faculty staffed by civil service and trade union-protected employees had also always been available. They did not want to lose it. [references omitted]. Conservative policies had been opposed during the Civil Rights Movement of the 1950s and 1960s. Activists voiced demands for substantive rights and the expansion of state services.

7. See In re Karen Perry, Appellant, No. 15-FM-180, DC Court of Appeals Jan. 12, 2017, available at https://www.dccourts.gov/sites/default/files/pdf-opinions/15-FM-180.pdf; and Brief of Respondent, Appellee, In re A.T., No. 10. A.3d 127, DC Court of Appeals 2010, available at http://www.ecases.us/case/dc/c2551730/in-re-at.

8. This philosophy was embodied in the Soviet constitutions, which stated, “USSR citizens are obliged to show concern for the upbringing of children, to prepare them for socially useful labor and to rear worthy members of a socialist society” (Imbrogno 1986, 166).

9. Historian Quinn (2008) notes that between 1929 and 1931, some fifteen thousand Americans visited the Soviet Union and learned of their educational methods. Wing (1974, 434) comments about what the Americans saw concerning the underdogs:

Many factories have special workshops for handicapped people—for example, a sewing machine factory in the neighborhood of No. 8 dispensary in Moscow has 300 handicapped people in such a shop, as well as providing sheltered conditions for other handicapped people within the open workshops. The standard of work required is, of course, very much higher in the open factories than in the sheltered workshops (though these have a much higher standard than our British day centers). For example, such workers need to be members of a trade union; they need sickness certificates if they wish to stay away from work. In addition, there are special factories with homes attached.

10. However, from the activist perspective, socialism is about fraternalism, not paternalism. Despite his anti-paternalism, Professor Wing endorsed and quoted the Soviet academic, Anton S. Makarenko (1888–1939). Makarenko (1967, xiii) wrote:

Both parents and children engaging in tasks appropriate to their different abilities but always for the common good is necessary for training in later collective living. By observing the example of such cooperative labor and mutual respect, and by himself carrying his proper share of responsibility, the child gradually acquires self–reliance, moral integrity and social dedication.

11. Historian Black (2003) studies how, following Darwinian theory, the Harriman railroad fortune was used to sterilize the disabled. Among the feminist groups that lobbied for eugenic legislation, as documented by Ziegler (2008) were the National Federation of Women’s Clubs, the Women’s Christian Temperance Union, and the National League of Women Voters. Those who study black eugenic thought include the scholars Dorr and Logan (2011). They write that W.E.B. DuBois, Thomas Wyatt Turner and academics at Tuskegee, Howard and Hampton Universities believed that only fit blacks should procreate to eradicate the race’s “heritage of moral iniquity” (72).

12. According to historian Surrell (2014). Germany’s medical people tended to be militant Nazis. The Polish–Jewish professor, Lemkin (1944) first used the term “genocide” in 1944 to describe the Nazi destruction of Jewish and Slavic ethnic and national groups. However, Surrell maintains that the German medical profession followed a similar policy against the low scorers starting in 1939. He defines genocide as the elimination of those groups that are seen as “undesirable” and that being a low scorer was seen as undesirable by the medical system.

13. Does I Through III v. District of Columbia, 232 F.R.D. 18 (D.D.C. 2005). See also Does v. District of Columbia, 374 F. Supp. 2d 107 (D.D.C. 2005).

14. Unfortunately, from the women’s perspective, a more genocidal Federal Appellate Court in 2007 overturned the 2005 decision, ruling that the city could forcibly abort them. To this decision law professor Catherine Blackburn objected that the appellate court was over-ruling the common law which respected the right of persons to make wrong or unwise decisions concerning health, or simply to differ with their health providers on the best course of action. Blackburn (1990, 459) wrote, “The common law has long recognized that only the individual experiences disease; only the individual experiences the effects of treatment for that disease; and only the individual can choose between the effects of disease and the effects of treatment.”

15. Eyman (1987, 2–3) points out that intellectual limitation is not unhealthy.

16. James P. Baker emphasizes that the nature of low scoring is not the reason why they are in poor health. He writes “Most can or should live long healthy lives” (Baker, Mixner, and Harris 2008, 19).

17. In the Matter of J.J. et al. (D.C. Super. Ct. Mental Retardation Mar. 8, 2007, M.R. Nos. 611–82), “case o,” In re B.G., M.R. 429–482, available at https://cwpublishers.files.wordpress.com/2018/06/id-cases.pdf.

18. Shirk (2006, 13) discusses the deterioration of the disabled under the medical model.

19. The “Mentally Retarded Citizens Constitutional Rights and Dignity Act of 1978.” DC Law 2–137, effective March 3, 1979; codified as DC Code § 7–1301.03(19) (2012 Repl. and 2016 Supp.) does not use IQ scores in defining intellectual disability, but rather focuses on functional factors. It defines intellectual disability as:

“Mental retardation” or “mentally retarded” means substantial limitation in capacity that manifests before 18 years of age and is characterized by significantly subaverage intellectual functioning existing concurrently with two or more significant limitations in adaptive functioning.

20. By definition 89% of the low-scorers are mildly retarded, 6% are moderately retarded, and 5% are severely retarded. See footnote 7 of the case In re Margaret Bicksler (501 A.2d 1, 14n.7 [1985]), available at https://www.leagle.com/decision/1985502501a2d11502.

21. According to records of testimony given before US Congressional committees (Forest Haven: Joint Oversight Hearings, Before the Subcommittee on Education, Labor, and Social Services and the Committee on the District of Columbia, House of Representatives, 94th Cong. second session [1976]. Accessed July 20, 2017. http://catalog.hathitrust.org/Record/002939594.), in the 1970s, when the DC population was 722,000, there were 29,000 developmentally “disabled,” of which 23,000 were “intellectually disabled.” Of these, 1,100 were served by the DDS. In addition, the DC public schools served 9,000 and the SRA served 14,000.

22. See Brown (2012, 20–21), who writes:

Regardless of where ULS presented, whether it was a day program, prevocational program, or supported employment program, ULS heard repeatedly from individuals that they want to work. Nevertheless, these individuals encounter a myriad of obstacles to employment… . Some individuals are told over and over again that they are not ready for work. They are told this by providers and representatives of DDS (DC Department of Disability Services). This seems to be true nationwide. One study found that “state and federal policy do not consistently prioritize employment.” It also found that community rehabilitation providers have not reallocated resources to community employment.

23. National Council on Disability (2009, 2) states that eleven states closed all their government-run institutions, while others retained all of them.

24. The Medicare Bill (1965) was enacted as an amendment to the Social Security Act of 1935. The bill was known as Title XVIII. Also passed at the same time was Medicaid or Title XIX. The latter provided federal matching funds to states in order to assist, among others, the senior intellectual underdogs that were at or near the poverty-line. DC and the state governments administered the program, following federal guidelines. Since 2001 the Centers for Medicare and Medicaid Services agency (CMS) under the US Department of Health and Human Services, set the guidelines. The federal financial contribution averages 60%, with DC putting up 40%. The guidelines require DC to run a “medical care advisory committee” which oversees the development of new policies and any changes in Medicaid administration. Currently Medicaid covers 42 million Americans, nine million of whom have disabilities. In 1972 Congress expanded Medicaid eligibility to include younger Americans (under 65) who have permanent disabilities. In the same year Congress enacted another program, Supplemental Security Income (SSI), which provided a guaranteed income to, among others, the intellectual underdogs (Bozic 2013, 18, 29–30).

25. Over the years, as the judiciary has complained, the city and its contractors did not acknowledge their neglect and resisted the courts, including seeking DC City Council legislation in 2002, 2009, 2016 and 2017 to divest Superior Court and the court-appointed attorneys of jurisdiction (Developmental Disability Reform Act of 2009; Citizens with Intellectual Disabilities Civil Rights Restoration Act of 2016).

26. No other jurisdiction provided such strong protection (US President’s Commission on Mental Health 1978, 54). The logic of the underdogs in having demanded permanent attorney advocacy ran along several lines. First, they argued that just as in a criminal commitment, when a person came under the state’s control, their rights were curtailed, such as choices about employment, family, housing, education and medication. The lawyer aided the committed person in mitigating the curtailment. Secondly, and more to the point they argued that the state came under their control. Their court–appointed lawyers were needed to fight against the city’s attempts to escape that control (Connelly 2015, Metro–C–4).

27. Among those who helped in the resistance against the contractors was the national organization, “Voice of the Retarded” (VOR, http://www.vor.net), as well as their AFSCME-represented, direct care workers. They sponsored research, organized politically, managed public relations, and participated in litigation (Forest Haven: Joint Oversight Hearings, Before the Subcommittee on Education, Labor, and Social Services and the Committee on the District of Columbia, House of Representatives, 94th Cong. second session [1976], p.122. Accessed July 20, 2017. http://catalog.hathitrust.org/Record/002939594). The Greater Washington Central Labor Council, AFL-CIO (The American Federation of Labor and Congress of Industrial Organizations) gave its help by establishing a foster-grandparent program in which 55 trade union families established an “adult-child” relationship with Forest Haven youth who had no parent.

28. Fair Labor Standards Act. 1938. Pub. L. 75–718, ch. 676, 52 Stat. 1060, 29 USC. ch. 8. June 25.

29. The scholars Sabatino and Litvak (1996, 289), Smith (2006, 1857) and Shamir (2009) documented the exploitation of homecare workers by the various labor and employment laws.

30. Jaffe and Sherwood (1994, 28); Gray (testimony in Forest Haven: Joint Oversight Hearings, Before the Subcommittee on Education, Labor, and Social Services and the Committee on the District of Columbia, House of Representatives, 94th Cong. second session [1976], p.174. Accessed July 20, 2017. http://catalog.hathitrust.org/Record/002939594). To monitor the Evans decision, the court required the city to establish the office of The Developmental Disabilities Professional (DDP). In 1983 DC ARC, Inc. obtained an appointment to carry out the DDP responsibilities. It operated under the name of DC ARC Pratt Monitoring Program. From the underdog perspective, it equated their protection with protecting contractor profit. The resistors were a cash–cow. From this view, there was a conflict of interest in both monitoring contractors and being a multi-million-dollar contractor. The ARC monitor stated (Clay 1996) the following contractor–oriented mandates in a 1996 list concerning the Evans court’s “Remedial Plan,” which it had negotiated:

1. reinforce the mandate to pay providers within 10 calendar days of receipt of an acceptable invoice.

2. requires DHS (Department of Human Services) or the CFO (Chief Finance Office) to submit monthly reports to the Court, Special Master and Court Monitor regarding Medicaid and MRDDA (Mental Retardation and Developmental Disabilities Administration) payments made.

3. assign civil fines, payable to the Clerk of the Court for failure to pay.

4. orders filed audits for ICFs (Intermediate Care Facilities) every three years with desk audits in between.

5. assigns the Special Master Authority to hear and act on any claim from providers of non-payment of acceptable invoices.

6. requires the District to establish a process for the negotiation and final conclusion of at least annual contracts for all Evans class providers by 10/31/96.

7. reinforces the 1:60 ratio case management ratio.

See also, DC ARC (1998, 2); DC ARC (2003) (DC ARC, Inc. in 2003 had gross receipts of $14,799,987).

31. Yale professors Bradley and Taylor (2013) joined with Carroll in noting that the whole society pays more for less:

The United States faces a central paradox in its health–care system: we spend more than any other industrialized country on health, yet we rank among the lowest in many dimensions of health. Our health–care spending is more than 17 percent of our gross domestic product, nearly double the spending in many other industrialized countries. But we rank far below most of these same nations in measures of life expectancy, infant mortality, and maternal mortality, among other key statistics. The huge costs and poor outcomes are difficult for Americans to fathom.

32. At the national level the Board of Trade contractors had the support of politicians like Ronald Reagan who used libertarian “freedom,” “Constitutional Rights,” and “fiscal conservatism” ideology to justify the replacement of the country’s public facilities with homelessness and prisons (Kraiem 2011; Bagenstos 2012, 6, endnote 129). Not unrelated, Ann B. Johnson studies the Medicaid attack on mental health facilities that paralleled the one on the intellectual underdogs. About its profit orientation, she writes,

I learned—the hard way—that a program’s client is never the patient but always the funding source, no matter what the program’s mission statement says… . What’s more, deinstitutionalization had nothing to do with what patients did or didn’t need, and everything to do with money. (Johnson 1990, xii, xiv)

33. Being federally funded, rather than by the DC City Council, the court–appointed lawyers had no particular loyalty to the city’s starvation agenda. On the judiciary’s federal funding, see DC Code § 11–2601 et seq. (2012 Repl.).

34. By going over her head and threatening to close the Habilitation Branch down completely, the magistrate’s enemies in 2010 were able to cut her tenure short. She was re–assigned to another division (Longus 2015, 4).

35. DC Code § 7–1305.05(h). This provision was incorporated into the DC Department of Human Services policy guidelines. See Department of Human Services of MRDDA (Mental Retardation and Developmental Disabilities Administration) (2001).

36. About the drugging abuse see Forest Haven: Joint Oversight Hearings, Before the Subcommittee on Education, Labor, and Social Services and the Committee on the District of Columbia, House of Representatives, 94th Cong. second session [1976], p.90. Accessed July 20, 2017. http://catalog.hathitrust.org/Record/002939594.

37. See In the Matter of J.J. et al. (D.C. Super. Ct. Mental Retardation Mar. 8, 2007, M.R. Nos. 611–82), “case h,” In re J.K., M.R. 10–90; “case k,” In re C.A., M.R. 27–95; “case i,” In re D.E., M.R. 97–85; and “case m,” In re K.S., M.R. 225–82, available at https://cwpublishers.files.wordpress.com/2018/06/id-cases.pdf. In all these cases the resistors won favorable rulings against the city’s use of drugs to restrain them. See also, Quality Trust (2009, 6).

38. Their court hearings allowed the activists to protest that the drugging prevented them from speaking spontaneously, taking initiative and voicing their demands, preoccupations and preferences. They are, as one of their advocates, Blackburn (1990, 459) commented, submerged in a sweet indifference, divorced from their environment by an invisible partition.

39. The experts documented that “diagnostic approaches are imperfect and imprecise even when done by the most qualified psychiatrists, … misdiagnosis may be as high as fifty percent” (Anderson 1984, 1036, 1039; see also, Ashcroft and Fraser 2001). Disability advocate Breggin (2013) called it “medicating normality” (see also, Kirk, Gomory, and Cohen 2013). In his view, to be anxious, depressed or rebellious when not allowed to have a job and family is a realistic response. Another scholarly ally, Sheehan et al. (2015), found that at the international level, using a study of 33,000 intellectual underdogs, some 71% of those being drugged did not have the kind of serious mental or seizure illness for which the drugs were designed. The judge in the Evans case, while not taking an expansive view, repeatedly attacked the government’s psychotropic medication program for not having an overall treatment plan, counseling, therapeutic strategies for coping without drugs or efforts to wean them off the drugs. See “Transcript of Motion Hearing before the Honorable Ellen Segal Huvelle.” Evans et al. v. Fenty et al., Civil Action 76–CV–00293, document 1157 (D.D.C. Dec. 17, 2009, 37–38), quoting from the “2009 Special Masters’ Report.” In a 2009 Evans case review recorded in ibid., 45, the judge rebuked the government because a resident at a group home owned by Westview Medical and Rehabilitation Services, Inc., was being prescribed ten different psychotropic medications.

40. See In the Matter of J.J. et al. (D.C. Super. Ct. Mental Retardation Mar. 8, 2007, M.R. Nos. 611–82), “case n,” In re M.M., M.R. 488–82, available at https://cwpublishers.files.wordpress.com/2018/06/id-cases.pdf.