Supported living or supportive living Smith, G. (1990). Supported Living: New Directions in Services for People with Developmental Disabilities. Alexandria, VA: National Association of State Mental Retardation Program Directors. refers to a range of services and community living arrangements (CLAs) designed with individuals with disabilities and their families to support citizens with disabilities to attain or retain their independence (see independent living) or interdependence in their local communities. Supported living is recorded in the history of the NASDDDS (National Association of State Directors of Developmental Disabilities Services), celebrating its 50th anniversary. Community Supported Living Arrangements (CSLA) was a landmark federal multi-state demonstration to illustrate the federal role in community living in the US.Lakin, K.C. & Burwell, B. (1995). Medicaid community supported living arrangements: Five year pilot projects with lasting effects. Supported Living, 8: 4-5.Smith, G. & Racino, J. Selection of US Demonstration States for CSLA and Home and Community-Based Services (HCBS) Medicaid Waivers. Washington, DC: NASMRPD and Syracuse University, Rehabilitation Research and Training Center on Community Integration. Supported living is considered a core service or program of community living programs funded through federal-state-local partnerships.
In the United States Supported living has been defined in diverse ways in the US, including early conceptualization in New York as integrated apartment living, and one early definition by the state of Oregon:
"Supported living is defined as persons with disabilities living where and with whom they want, for as long as they want, with the ongoing support needed to sustain that choice."Bellamy, G.T. & Horner, R.H. (1987). Beyond high school: Residential and employment options after graduation. (p. 506) In: M. Snell (Ed.), "Systematic Instruction of Persons with Severe Handicaps." (3rd edition). Columbus, Ohio: Charles E. Merrill.
"Supported living...its simplicity is elegant. A person with a disability who requires long-term publicly funded, organized assistance, allies with an agency whose role is to arrange or provide whatever assistance is necessary for the person to live in a decent and secure home of the person's own."O'Brien, J. (1993). "Supported Living: What's the Difference?" Lithonia, GA: Responsive Systems Associates.
As a form of community living development, supported living became identified with certain approaches to services and community, including the own home initiatives. These services involved an understanding of "formal" and "informal support" (and their relationship), and changes from "group thinking" approaches (e.g., ten intermediate care facilities for 15 persons each) to planning services for, with and by the person "targeted to be served."Taylor, S., Racino, J., Knoll, J. & Lutfiyya, Z. (1987). "The Nonrestrictive Environment: On Community Integration for Persons with the Most Severe Disabilities." Syracuse, NY: Human Policy Press. For example:
"Supportive living represents a movement within the (intellectual and) developmental disabilities field to provide support services in regular housing to adults with disabilities. Direct support services can be provided by paid staff, including live-in roommates or boarders, paid neighbors, a person hired as an attendant, a support worker or personal assistant, as well as more traditional agency and (modified) shift(live-in) staffing. Professionals, friends, families, and other "informal supports" can also assist people to live in their homes. Supported living may be joined to a movement toward decent, affordable and accessible housing."Racino, J., Walker, P., O'Connor, S. & Taylor, S. (1993). "Housing, Support and Community: Strategies for Adults with Disabilities". Baltimore, MD: Paul H. Brookes.Taylor, S., Racino, J. & Rothenberg, K. (1988). "A Policy Analysis of Private Community Living Arrangements in the State of Connecticut." Syracuse, NY: Center on Human Policy, Syracuse University, Research and Training Center on Community Integration.Racino, J. (1993). "Living in the Community Toward Supportive Policies in Housing and Community Services." Report prepared by Community and Policy Studies for the New York State Department of Health on traumatic brain injury technology transfer; adapted by permission. Reprinted in: Racino, J. (1997). Youth and community life: Expanding options and choices. In: S. M. Pueschel & M. Sustrova (Eds.), "Adolescents with Down's Syndrome: Toward A More Fulfilling Life". (pp. 361-362). Baltimore, MD: Paul H. Brookes.
Supported living in the US has multiple known origins, including: The development of a service category of community living for people deemed capable of more independent living (also known as semi-independent living).New York State Association of Community Residence Administrators. (@1980, no known reference). Racino, J. & Schwartz, D. (education co-chairs). "Supportive Living in New York State." Albany, NY: Author.Halpern, A.S., Close, D.W., & Nelson, D.J. (1986). "On My Own: The Impact of Semi-Independent Living Programs for Adults with Mental Retardation." Baltimore, MD: Paul H. Brookes. As a major reform initiative in the US to provide more choices, more integrated and more regular homes and apartments for people with the "most severe disabilities".Racino, J., O'Connor, S., Shoultz, B., Taylor, S. & Walker, P. (1991, April/May). Housing and support services: Practical strategies. "TASH Newsletter," 9-11, 16-19. As part of organizational studies during that period (i.e., programs, agencies, and to some extent, state, regional and county systems), including differentiating family support for children and supportive living for adults.Taylor, S., Bogdan, R. & Racino, J. (1991). "Life in the Community: Case Studies Supporting People with Disabilities in the Community." Baltimore, MD: Paul H. Brookes.Racino, J. (1991). Organizations in community living: Supporting people with disabilities. "Journal of Mental Health Administration", 18(1), 51-59. As state reform and development to a supportive living approach, involving new service structures, program development and financing.Racino, J., O'Connor, S., Shoultz, B., Taylor, S.J. & Walker, P. (1989). "Moving into the 1990s: A Policy Analysis of Community Living Arrangements for Adults with Developmental Disabilities in South Dakota." Syracuse, NY: Syracuse University, Center on Human Policy, Research and Training on Community Integration.Smith, G. (1990). "Supported Living: New Directions in Services for Developmental Disabilities." Alexandria, VA: National Association of State Mental Retardation Program Directors. As a federal initiative to define and fund supportive living (and services and supports, such as personal care, respite care, environmental modifications, case management, chore services, companion services, skilled nursing, supportive living coach).Smith, G. & Gettings, R. (1994). "The HCB (Home and Community-Based) Waiver and CSLA (Community Supported Living Arrangement) Programs: An Update on Medicaid's Role in Supporting People with Developmental Disabilities in the Community." Alexandria, VA: National Association of State Directors of Developmental Disabilities Services, Inc.Allard, M. (1996). Supported living policies and programs in the USA. In: J. Mansell & K. Ericsson, "Deinstitutionalization and Community Living," (pp. 98-116). London: Chapman & Hall. As provider and agency accounts, and organizational development (e.g., leadership, person-centered, individualized and flexible support services).Racino, J. (2011, October). Notes to the Field: On Individualized and Flexible Supports". Rome, NY: Freelance Writer at Julie Ann Racino.Klein, J. (1992). Get me the hell out of here: Supporting people with disabilities to live in their own homes. In: J. Nisbet (Ed.), "Natural Supports in School, at Work, and in the Community for People with Severe Disabilities". (pp. 277-339). Baltimore, MD: Paul H. Brookes.O'Brien, J. & Lyle O'Brien, C. (1989). Sustaining positive changes: The future development of the Residential Support Program. In: S.J. Taylor, R. Bogdan & J.Racino (Eds.). (1991). "Life in the community: Case studies of organizations supporting people with disabilities". (pp. 153-170). Baltimore, MD: Paul H. Brookes. As part of the movement toward direct support professional and community support workers in the US and other countries such as Canada.Adler, D. (1993). Perspectives of a support worker. In: Racino, J., Walker, P., O'Connor, S. & Taylor, S. (Eds.), "Housing, Support and Community: Choices and Strategies for Adults with Disabilities." (pp.217-231). Baltimore, MD: Paul H. Brookes.O'Brien, J. & Lyle O'Brien, C. (1992). "Remembering the Soul of Our Work: Stories by the Staff of Options in Community Living: Madison, Wisconsin." Madison, Wisconsin. As parent and "service user" accounts of supported living, homes and support services, and as linking with self-advocacy efforts in states in the US.Kennedy, M.J. (1993). Turning the pages of life. In: Racino, J., Walker, P., O'Connor, S. & Taylor, S., "Housing, Support and Community". (pp. 205-216). Baltimore, MD: Paul H. Brookes.Moore, C. (1993). Letting go, moving on: A parent's thoughts. (pp. 189-204). In: Racino, J., Walker, P., O'Connor, S., & Taylor (Eds.), "Housing, Support and Community." Baltimore, MD: Paul H. Brookes. As linking with independent living as supportive living in the community for "special population groups" or persons then "deemed in need of institutional settings", including nursing homes.Racino, J. & Heumann, J. (1992). Building coalitions among elders, people with disabilities, and our allies. (pp.79-98). In: E.F. Ansello & N. Eustis, "Aging and Disabilities: Seeking Common Ground. Amityville, NY: Baywood Publishing Co.Racino, J. (1992). Living in the community: Independence, support and transition. In: F.R. Rusch, L.DeStefano, J. Chadsey-Rusch, L.A. Phelps, & E. Szymanski (Eds.), "Transition from School to Adult Life: Models, Linkages and Policy." (pp. 131-148). Sycamore, IL: Sycamore Publishing Co.
Evolution of the concept