The Evolution of Oppressive Supports


Syard Evans I Society & Culture I Analysis I November 6th, 2013



In the realm of social justice, much attention is given to systemic oppression experienced by numerous groups characterized by race, gender, age, religious belief, socioeconomic status, sexual orientation, and more. Yet many individuals committed to the fight for social justice for all individuals are un- or under-informed regarding one of the most oppressed groups of citizens in the United States and around the world. Individuals who experience intellectual and developmental disabilities often rely on specialized services and supports. As a result, individuals in this population are frequently viewed as burdens to our social infrastructure instead of fellow citizens with inalienable rights. One of the most prominent forms of oppression experienced by this group is the lack of access to humane services and supports that respect the service recipient and endeavor to protect dignity and acknowledge human value.

Individuals who experience intellectual and developmental disabilities (ID/DD) often rely on support services to assist with a broad range of activities of daily living, including meal preparation, hygiene and personal care assistance, home care and maintenance, behavior management, transportation, communication supports, and social and emotional supports. Historically, the primary option for daily supports for this population, outside of family provisions, has been services in large, segregated, state-operated institutional facilities.[1] However, the implementation of Medicaid Waiver in 1981 and the Olmstead Supreme Court ruling in 1999 made community-based services available on the state level and deemed such services a constitutional right of individuals with ID/DD.[2] [3] These legislative events and on-going scrutiny of Medicaid spending have resulted in the population of individuals with ID/DD living in institutional placements decreasing exponentially and community-based service recipients increasing significantly. In 1992, 104,986 individuals with ID/DD received support services in large institutional settings in the United States (U.S.) and 62,462 individuals with ID/DD utilized Medicaid Waiver community-based services in the U.S. By 2006, only 58,195 individuals with ID/DD continued to utilize institutional services in this country, while 479,392 individuals with ID/DD accessed community-based support services.[4]

Community-based supports have been promoted and advocated for by a wide-range of self-advocacy organizations within the ID/DD community and have been identified as superior to segregated, institutional placements for promoting higher quality of life and adaptive functioning skills for individuals with ID/DD.[5][6][7] [8] [9] [10] [11] Still, much controversy surrounds attempts to close institutional placements, and groups often continue to advocate for these segregated services.[12] These restrictive, segregated types of services are often seen as appropriate options to meet the complex needs of individuals with significant disabilities and are often reserved as options for those individuals with the most severe functional limitations resulting from a disabling condition. [13] The personal nature of the debate over institutional services versus community-based services for individuals with ID/DD often results in strongly-held, passionate philosophical perspectives regarding the issue.

The national deinstitutionalization movement for individuals with intellectual and developmental disabilities (ID/DD) in the United States of America began in 1967 when the population of individuals with ID/DD living in isolated institutional settings peaked at 194,650 and has continuously declined ever since. [14] The catalysts for this decline in institutional occupation were increasing incidents of public exposure to horrid living conditions inside institutions for individuals with ID/DD, including, then U.S. Senator, Robert Kennedy's 1965 visits to two state-operated institutions and his public descriptions of the awful conditions he found followed by the investigative journalism efforts of Burton Blatt and Fred Kaplan in that same year. Blatt and Kaplan toured five state-operated institutions and covertly took photographs of the living conditions inside using a hidden camera and published their experiences in Christmas in Purgatory. Following these incidents of exposure, public pressure for reform intensified, and a substantial debate ensued over whether or not individuals with ID/DD had a legal right to receive support services and if those services are legally required to be provided in the least restrictive environment (LRE). This debate continues in varying degrees to this day. As the debate continues, over the last 40 years, the population of individuals with ID/DD living in isolated state-operated institutional settings in the U.S. has decreased by 81.2%.

This exodus from institutional settings presented a dilemma for individuals with ID/DD who maintained a need for daily living supports and the families who loved and cared for them. In response to the growing need for support options for individuals with ID/DD outside of segregated institutional settings, a Home and Community-Based Services (HCBS) Waiver was established under the Social Security Act in the early 1980s. The HCBS Waiver provided a funding option for individuals with ID/DD who previously had to rely solely on Medicaid funding to secure supports to purchase community-based daily-living supports outside of medical environments. Despite the new option of the HCBS Waiver, many states continued to not provide state-funded community-based support services for individuals with ID/DD until a Supreme Court ruling in 1999, the Olmstead decision, established that it is unconstitutional for an individual to have to receive needed support services in an isolated institutional setting.[15] By ensuring that all states must provide community support options for individuals with ID/DD, the Olmstead decision exacerbated the mass departure from institutional settings. Prior to the Olmstead decision in 1992, only 62,462 individuals with ID/DD received services through the HCBS Waiver. Following the ruling, that number drastically increased to 479,392 individuals in 2006.

The most recent developments in the struggle for access to appropriate, inclusive support services for individuals with ID/DD present themselves in the Community First Choice provision of the Affordable Care Act which offers individuals with ID/DD the most flexible and expansive range of community-based services to promote choice and empowerment in meeting service needs ever provided. The opportunities that exist under this new service funding structure are significant, but the concerns regarding access eligibility and individual state implementation are as well. Only time and aggressive advocacy will determine whether or not this shift in service delivery for individual with ID/DD will be a continuation of an evolution of empowerment and inclusion or yet another form of systemic oppression for individuals to overcome. If the opposition to the Affordable Care Act by extremist right-wing groups is any indication, there is much opportunity for social justice in the new system for this particular population.




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Notes



[1] Taylor, S. J. (2001). The continuum and current controversies in the USA. Journal of Intellectual & Developmental Disability, 26(1), 15-33.

[2] Sharpiro, J. P. (1994). No pity: People with disabilities forging a new civil rights movement. New York, New York: Three Rivers Press.

[3] U.S. Department of Health & Human Services Centers for Medicare & Medicaid Services. (2010). HCBS waivers - section 1915 (c). Retrieved February 22, 2011, from https://www.cms.gov/MedicaidStWaivProgDemoPGI/05_HCBSWaivers-Section1915(c).asp

[4] Lankin, K.C., Prouty, R., and Coucouvanis, K. (2007). Rebalancing initiatives and their effects on home and community and institutional services for persons with ID/DD. Intellectual and Developmental Disabilities, 45(3), 221-226.

[5] O'Brien, P., Thesing, A., Tuck, B., and Capie, A. (2001). Perceptions of change, advantage and quality of life for people with intellectual disability who left a long stay institution to live in the community. Journal of Intellectual & Developmental Disability, 26(1), 67-82.

[6] Lerman, P., Apgar, D. H., and Jordan, T. (2005). Longitudinal changes in adaptive behaviors of movers and stayers: Findings from a controlled research design. Mental Retardation, 43(1), 25.

[7] Mansell, J. (2006). Deinstitutionalisation and community living: Progress, problems and priorities. Journal of Intellectual & Developmental Disability, 31(2), 65-76.

[8] Mansell, J. and Beadle-Brown, J. (2010). Deinstitutionalisation and community living: Position statement of the comparative policy and practice special interest research group of the international association for the scientific study of intellectual disabilities. Journal of Intellectual Disability Research, 54(2), 104-112.

[9] Hamelin, J. P., Frijters, J., Griffiths, D., Condillac, R., and Owen, F. (2011). Meta-analysis of deinstitutionalisation adaptive behaviour outcomes: Research and clinical implications. Journal of Intellectual & Developmental Disability, 36(1), 61-72.

[10] ADAPT. (2011). ADAPT's defending our freedom campaign. Retrieved March 3, 2011, from http://www.adapt.org/adapt-campaign

[11] TASH. (2011). Community living. Retrieved February 10, 2011, from http://tash.org/advocacy-issues/community-living/

[12] VOR. (2011). VOR: Speaking out for people with mental retardation. Retrieved February 2, 2011, from http://www.vor.net/

[13] Neely-Barnes, S., Marcenko, M. O., and Weber, L. (2008). Community-based, consumer-directed services: Differential experiences of people with mild and severe intellectual disabilities. Social Work Research, 32(1), 55-64.

[14] Scott, N., Lakin, K. C., and Larson, S. A. (2008). The 40th anniversary of DeinstitutionaLization in the United States: Decreasing state InstitutionaL PopuLations, 1967-2007. Intellectual & Developmental Disabilities, 46(5), 402.

[15] Lankin, K.C. and Braddock, D. (2009). The 10th anniversary of Olmstead (1999): Has it made a difference for people with developmental disabilities? Intellectual and Developmental Disabilities, 47(5), 403-406.