Making Life Work: Freedom and Disability in a Community Group Home

Notes

Introduction 1. This and all subsequent similar citations are to Mental Hygiene Law, Title 14, of the New York Codes, Rules, and Regulations (N.Y.C.R.R.). 2. There is, in addition, a pool of regular substitute counselors, mostly full-time direct-service employees at other facilities in the agency who are well known to the residents. They are also racially and ethnically diverse, are mostly women, and are in their twenties and early thirties. 2. Governing Disability in the Community 1. See, for example, Bercovici; Copp 1998a; Foster; Goode 1983; Goode and Waksler; Heshusius; Johnson; Kielhofner; Kliewer and Drake; Myers, Ager, Kerr, and Myles; Rose-Ackerman; Stroman; Taylor 2001; Taylor, Bogdan, and Lutfiyya; Wing; and Young and Quibell. 2. See, for example, Bogdan and Taylor 1982, 1987, 1989a, 1989b; Gleason; Goode 1983, 1994; Goode and Waksler; Heshusius; Jacobs; Langness and Levine; and Pollner and Goode. 3. See Davis 1995, 1997; Linton; Oliver; and Tremain. 4. See, for example, Angrosino 1997a, 1997b, 1992; Baroff; Bogdan and Taylor 1982, 1987, 1989a; Danforth and Navarro; Devlieger; Dowse; Dudley; Ferguson; Gillman, Heyman, and Swain; Radford; Rapley, Kiernan, and Antaki; Simpson 1996b; Stockholder; Taylor 2000; and Woodill. 5. Some of the areas in which researchers have studied governmentality are accounting (Hopwood and Miller), alcohol regulation and alcoholism (Valverde), child abuse and prevention (Parton), criminology (Smandych), the emergence of economic science and the economy (D. Burchell; Miller and Rose), education (A. Barron), insurance and risk (Ewald), poverty (Procacci), the medical profession (Osborne), community psychiatry (Castel; Rose 1996b, 1998), psychology (Rose 1996a), statistical sciences (Hacking 1986), unemployment (Dean 1995), welfare programs for women (Cruikshank), and transformations in the welfare state (Barry, 251 NOTES Osborne, and Rose; Rose 1999). For comprehensive accounts of the theoretical and empirical contributions of governmentality, see Dean 1999; and Rose 1999. 3. The Work of Everyday Life 1. For studies of work and organizations, see, for example, Garfinkel 1986; Lynch 1985, 1993; Rawls 2008; Suchman; and Orr. Studies on the sociology of deviance and social control include, for example, Sudnow 1965, 1967; and Wieder. 2. See also Mitchell 1983, 1984; and Van Velsen. 7. Expertise and the Work of Staff Meetings 1. The DSM refers to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, which, since the 1980s, has been the diagnostic standard in mental health practice across fields. There was a copy of the DSM in the staff office, though I only ever saw Cynthia take it off the shelf, which was notable to me because she was the behavior specialist. 8. Paper Technologies 1. See Beaulieu 2001, 2002; Dumit; Garfinkel, Lynch, and Livingston; KnorrCettina and Mulkay; Lynch 1985, 1993; and Traweek. 2. The focus of most social science research has been on the unintended consequences or inappropriate use of records and written documents: as instruments of client control or worker discretion in people-processing work (Goffman 1961; Lipsky; McCleary; Meehan; Prottas), as professional organizational accounts that contrast with the perceptions and experience of crime victims (Fleury, Sullivan, and Bybee) and patients (Weiss), as inaccurate accounts of actual social work practice (Floersch; Monnickendam, Yaniv, and Geva), as evidence of racial and ethnic bias in juvenile justice (Mesch and Fishman) and in hospital (Weiss), or, more broadly, as central to control in organizations historically (Wheeler; Yates). 3. Social Security Act § 1915[c]; U.S. Department of Health and Human Services Health Care Financing Administration, 42 CFR 430.25. 4. I provide here only an overview of the waiver program, and my discussion is limited to those aspects which are relevant to group home work. For example, I do not address the complex calculation of room and board fees, which are paid by a combination of an individual’s federal entitlement and OMRDD funds, because this work is done not at Driggs House but at the main office of its parent agency. Since I completed my fieldwork, there have been some changes in the federal funding scheme and OMRDD practice, which I address briefly in the conclusion of the book. 5. The OMRDD is apparently concerned about its own contribution to a bureaucratic climate that discourages participation. One Medicaid Service Coordinator training manual instructs, “Avoid Acronyms. The use of unexplained or 252 notes confusing acronyms puts people off, and makes them feel uninformed. It’s okay to use acronyms—after you have explained what they mean” (OMRDD 2000). 6. The allowable categories of service are training...