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Philosophy of Care

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Handbook of Intellectual Disabilities

Part of the book series: Autism and Child Psychopathology Series ((ACPS))

Abstract

Once largely segregated from society, marked changes in where and how persons with intellectual disorders are treated have been developed. Major philosophies of care provision include deinstitutionalization, normalization, inclusion, self-determination, and person-centered planning. This chapter provides an overview of the evolution in thinking and current practices with respect to enhancing the well-being of persons with intellectual disabilities.

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References

  • Abbott, S., & McConkey, R. (2006). The barriers to social inclusion as perceived by people with intellectual disabilities. Journal of Intellectual Disabilities, 10(3), 275–287. https://doi.org/10.1177/1744629506067618

    Article  Google Scholar 

  • Bank-Mikkelsen, N. E. (1969). A metropolitan area in Denmark: Copenhagen. In R. Kugel & W. Wolfensberger (Eds.), Changing patterns in residential services for the mentally retarded (pp. 227–254). Washington, DC: President’s Committee on Mental Retardation.

    Google Scholar 

  • Beadle-Brown, J., Mansell, J., & Kozma, A. (2007). Deinstitutionalization in intellectual disabilities. Current Opinion in Psychiatry, 20(5), 437. https://doi.org/10.1097/YCO.0b013e32827b14ab

    Article  Google Scholar 

  • Bickenbach, J. E., Chatterji, S., & Badley, E. M. (1999). Models of disablement, universalism and the International Classification of Impairments, Disabilities and Handicaps. Social Science, 48(9), 1173–1187.

    Google Scholar 

  • Bollard, M. R. (2009). Intellectual disability and social inclusion: A critical review. New York: Elsevier Health Sciences.

    Google Scholar 

  • Buchner, T. (2009). Deinstitutionalisation and community living for people with intellectual disabilities in Austria: History, policies, implementation and research. Tizard Learning Disability Review, 14(1), 4–13. https://doi.org/10.1108/13595474200900002

    Article  Google Scholar 

  • Buell, K., & Minnes, P. M. (2006). An acculturation perspective on deinstitutionalization and service delivery. Journal on Developmental Disabilities, 7–17.

    Google Scholar 

  • Butterworth, J., Hagner, H., Heikkinen, B., Faris, S., DeMello, S., & McDonough, K. (1993). Whole Life Planning: A guide for organizers and facilitators. Boston, MA: Training and Research Institute for People with Learning Disabilities.

    Google Scholar 

  • Campbell, E. M., & Heal, L. W. (1995). Prediction of cost, rates, and staffing by provider and client characteristics. American Journal on Mental Retardation, 100(1), 17–35.

    Google Scholar 

  • Chowdhury, M., & Benson, B. A. (2011). Deinstitutionalization and quality of life of individuals with intellectual disability: A review of the international literature. Journal of Policy and Practice in Intellectual Disabilities, 8(4), 256–265.

    Article  Google Scholar 

  • Claes, C., Van Hove, G., Vandevelde, S., van Loon, J., & Schalock, R. L. (2010). Person-centered planning: Analysis of research and effectiveness. Intellectual and Developmental Disabilities, 48(6), 432–453. https://doi.org/10.1352/1934-9556-48.6.432

    Article  Google Scholar 

  • Clark, H. B., Knab, J. T., & Kincaid, D. (2005). Person-centered planning. In Encyclopedia of behavior modification and cognitive behavior therapy (Vol. 1–3, pp. 429–430). Thousand Oaks: SAGE Publications, Inc. https://doi.org/10.4135/9781412950534

    Chapter  Google Scholar 

  • Cocks, E. (2001). Normalisation and social role valorisation: Guidance for human service development. Hong Kong Journal of Psychiatry, 11(1), 12–16.

    Google Scholar 

  • Coucouvanis, K., Lakin, K. C., Prouty, R., & Webster, A. (2006). Reductions continue in average daily populations of large state facilities; Nearly 70% decrease between 1980 and 2005. Mental Retardation, 44(3), 235–238. https://doi.org/10.1352/0047-6765(2006)44[235:RCIADP]2.0.CO;2

    Article  Google Scholar 

  • Culham, A., & Nind, M. (2003). Deconstructing normalisation: Clearing the way for inclusion. Journal of Intellectual & Developmental Disability, 28(1), 65–78. https://doi.org/10.1080/1366825031000086902

    Article  Google Scholar 

  • Deci, E. L., & Ryan, R. M. (2008). Self-determination theory: A macrotheory of human motivation, development, and health. Canadian Psychology/Psychologie Canadienne, 49(3), 182–185. https://doi.org/10.1037/a0012801

    Article  Google Scholar 

  • Developmentally Disabled Assistance and Bill of Rights Act, Pub. L. No. 94–103 (1975).

    Google Scholar 

  • Duggan, C., & Linehan, C. (2013). The role of ‘natural supports’ in promoting independent living for people with disabilities; a review of existing literature. British Journal of Learning Disabilities, 41(3), 199–207. https://doi.org/10.1111/bld.12040

    Article  Google Scholar 

  • Fakhoury, W., & Priebe, S. (2007). Deinstitutionalization and reinstitutionalization: Major changes in the provision of mental healthcare. Psychiatry, 6(8), 313–316. https://doi.org/10.1016/j.mppsy.2007.05.008

    Article  Google Scholar 

  • Hall, E. (2005). The entangled geographies of social exclusion/inclusion for people with learning disabilities. Health & Place, 11(2), 107–115. https://doi.org/10.1016/j.healthplace.2004.10.007

    Article  Google Scholar 

  • Hall, E., & McGarrol, S. (2012). Bridging the gap between employment and social care for people with learning disabilities: Local Area Co-ordination and in-between spaces of social inclusion. Geoforum, 43(6), 1276–1286. https://doi.org/10.1016/j.geoforum.2012.03.015

    Article  Google Scholar 

  • Hallam, A., Beecham, J., Knapp, M., Carpenter, J., Cambridge, P., Forrester-Jones, R., … Wooff, D. (2006). Service use and costs of support 12 years after leaving hospital. Journal of Applied Research in Intellectual Disabilities, 19(4), 296–308. https://doi.org/10.1111/j.1468-3148.2006.00278.x

    Article  Google Scholar 

  • Holburn, S. (2002). How science can evaluate and enhance person-centered planning. Research and Practice for Persons with Severe Disabilities, 27(4), 250–260. https://doi.org/10.2511/rpsd.27.4.250

    Article  Google Scholar 

  • Horejsi, C. R. (1975). Deinstitutionalization and the development of community based services for the mentally retarded: An overview of concepts and issues. Retrieved from https://eric.ed.gov/?id=ED112606

  • Jeevanandam, L. (2009). Perspectives of intellectual disability in Asia: epidemiology, policy, and services for children and adults. Current Opinion in Psychiatry, 22(5), 462. https://doi.org/10.1097/YCO.0b013e32832ec056

    Article  Google Scholar 

  • Kaehne, A., & Beyer, S. (2014). Person-centred reviews as a mechanism for planning the post-school transition of young people with intellectual disability: Person-centred transition reviews. Journal of Intellectual Disability Research, 58(7), 603–613. https://doi.org/10.1111/jir.12058

    Article  Google Scholar 

  • Kanner, L. (1967). Medicine in the history of mental retardation: 1800–1965. American Journal of Mental Deficiency, 72(2), 165–170.

    Google Scholar 

  • Karten, T. J. (2015). Historical background of disabilities. In Embracing disabilities in the classroom: Strategies to maximize students assets (pp. 2–32). New York: Skyhorse Publishing, Inc..

    Google Scholar 

  • Kittay, E. F. (2001). When caring is just and justice is caring: Justice and mental retardation. Public Culture, 13(3), 557–579.

    Article  Google Scholar 

  • Knobbe, C. A., Carey, S. P., Rhodes, L., & Horner, R. H. (1995). Benefit-cost analysis of community residential versus institutional services for adults with severe mental retardation and challenging behaviors. American Journal on Mental Retardation, 99(5), 533–541.

    Google Scholar 

  • Kozma, A., Mansell, J., & Beadle-Brown, J. (2009). Outcomes in different residential settings for people with intellectual disability: A systematic review. American Journal on Intellectual and Developmental Disabilities, 114(3), 193–222. https://doi.org/10.1352/1944-7558-114.3.193

    Article  Google Scholar 

  • Kugel, R. B., & Wolfensberger, W. (Eds.). (1969). Changing patterns in residential services for the mentally retarded. Washington, DC: President’s Committee on Mental Retardation.

    Google Scholar 

  • Kumar, D. A., & Singh, D. R. R. (2015). Normalization vs. social role valorization: Similar or different? International Journal of Special Education, 30(3), 1–7.

    Google Scholar 

  • Landesman, S., & Butterfield, E. C. (1987). Normalization and deinstitutionalization of mentally retarded individuals. American Psychologist, 42(8), 809–816.

    Article  Google Scholar 

  • Larson, S. A., Eschenbacher, H. J., Anderson, L. L., Taylor, B., Pettingell, S., Sowers, M., & Bourne, M. L. (2018). In-home and residential long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2016. Minneapolis, MN: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration.

    Google Scholar 

  • Lemay, R. (1995). Social role valorization theory and the principle of normalization. In Encyclopedia of disability and rehabilitation (pp. 515–521). New York: Simon & Schuster Macmillan.

    Google Scholar 

  • Lin, L.-P., Hsu, S.-W., Kuo, F.-Y., & Lin, J.-D. (2013). Geographic differences in social-welfare oriented institutional care for people with disabilities in Taiwan, 2002–2009. Research in Autism Spectrum Disorders, 7(1), 43–48. https://doi.org/10.1016/j.rasd.2012.07.008

    Article  Google Scholar 

  • Lin, L.-P., & Lin, J.-D. (2011). Perspectives on intellectual disability in Taiwan: Epidemiology, policy and services for children and adults. Current Opinion in Psychiatry, 24(5), 413–418. https://doi.org/10.1097/YCO.0b013e328346176e

    Article  Google Scholar 

  • Malian, I., & Nevin, A. (2002). A review of self-determination literature: Implications for practitioners. Remedial and Special Education, 23(2), 68–74. https://doi.org/10.1177/074193250202300202

    Article  Google Scholar 

  • Mansell, J. (2006). Deinstitutionalisation and community living: Progress, problems and priorities. Journal of Intellectual & Developmental Disability, 31(2), 65–76. https://doi.org/10.1080/13668250600686726

    Article  Google Scholar 

  • Mansell, J., & Ericsson, K. (2013). Deinstitutionalization and community living: Intellectual disability services in Britain, Scandinavia and the USA. London: Chapman and Hall.

    Google Scholar 

  • Martin, J. E., & Marshall, L. H. (1996). Infusing self-determination instruction into the IEP and transition process. In Self-determination across the lifespan: Independence and choice for people with disabilities. Baltimore, MD: Paul H. Brookes. Retrieved from http://journals.sagepub.com/doi/pdf/10.1177/088572889301600105

    Google Scholar 

  • Martinez-Leal, R., Salvador-Carulla, L., Linehan, C., Walsh, P., Weber, G., Van Hove, G., … Kerr, M. (2011). The impact of living arrangements and deinstitutionalisation in the health status of persons with intellectual disability in Europe. Journal of Intellectual Disability Research, 55(9), 858–872.

    Article  Google Scholar 

  • McCorquodale, R. (1994). Self-determination: A human rights approach. International & Comparative Law Quarterly, 43(4), 857–885. https://doi.org/10.1093/iclqaj/43.4.857

    Article  Google Scholar 

  • Menchetti, B. M., & Garcia, L. A. (2003). Personal and employment outcomes of person-centered career planning. Education and Training in Developmental Disabilities, 38(2), 145–156.

    Google Scholar 

  • Mercadante, M. T., Evans-Lacko, S., & Paula, C. S. (2009). Perspectives of intellectual disability in Latin American countries: Epidemiology, policy, and services for children and adults. Current Opinion in Psychiatry, 22(5), 469. https://doi.org/10.1097/YCO.0b013e32832eb8c6

    Article  Google Scholar 

  • Mount, B. (1994). Benefits and limitations of Personal Futures Planning. In V. J. Bradley, J. W. Ashbaugh, & B. C. Blaney (Eds.), Creating individual supports for people with developmental disabilities: A mandate for change at many levels (pp. 97–108). Baltimore, MD: Paul H. Brookes.

    Google Scholar 

  • Nirje, B. (1969). The normalization principle and its human management implications. In R. Kugel & W. Wolfensberger (Eds.), Changing patterns in residential services for the mentally retarded (pp. 179–195). Washington, DC: President’s Committee on Mental Retardation.

    Google Scholar 

  • Nirje, B. (1970). The normalisation principle-implications and comments. Journal of Mental Subnormality, 16, 62–70.

    Article  Google Scholar 

  • Nirje, B. (1985). The basis and logic of the normalization principle. Australia and New Zealand Journal of Developmental Disabilities, 11(2), 65–68. https://doi.org/10.3109/13668258509008747

    Article  Google Scholar 

  • Northway, R. (2002). Integration and inclusion: Illusion or progress in services for disabled people? Social Policy & Administration, 31(2), 157–172. https://doi.org/10.1111/1467-9515.00046

    Article  Google Scholar 

  • O’Brien, J., & Lovett, H. (1993). Finding a way toward everyday lives: The contribution of person centered planning. Retrieved from https://eric.ed.gov/?id=ED356596

  • Oliver, M. (1990). The politics of disablement: A sociological approach. Basingstoke: Palgrave Macmillan.

    Book  Google Scholar 

  • Paulson, G. (2012). Closing the asylums: Causes and consequences of the deinstitutionalization movement. Jefferson, NC: McFarland & Co. Publishers.

    Google Scholar 

  • Pearpoint, J., O’Brien, J., & Forest, M. (1993). PATH: A workbook for planning positive possible futures and planning alternative tomorrows with hope for schools, organizations, businesses, and families (2nd ed.). Toronto: Inclusion Press.

    Google Scholar 

  • Perrin, B., & Nirje, B. (1985). Setting the record straight: A critique of some frequent misconceptions of the normalization principle. Australia and New Zealand Journal of Developmental Disabilities, 11(2), 69–74. https://doi.org/10.3109/13668258509008748

    Article  Google Scholar 

  • Power, A. (2013). Making space for belonging: Critical reflections on the implementation of personalised adult social care under the veil of meaningful inclusion. Social Science & Medicine, 88, 68–75. https://doi.org/10.1016/j.socscimed.2013.04.008

    Article  Google Scholar 

  • Quane, H. (1998). The United Nations and the evolving right to self-determination. International & Comparative Law Quarterly, 47(3), 537–572. https://doi.org/10.1017/S0020589300062175

    Article  Google Scholar 

  • Ratti, V., Hassiotis, A., Crabtree, J., Deb, S., Gallagher, P., & Unwin, G. (2016). The effectiveness of person-centred planning for people with intellectual disabilities: A systematic review. Research in Developmental Disabilities, 57, 63–84. https://doi.org/10.1016/j.ridd.2016.06.015

    Article  Google Scholar 

  • Renzaglia, A., Karvonen, M., Drasgow, E., & Stoxen, C. C. (2003). Promoting a lifetime of inclusion. Focus on Autism and Other Developmental Disabilities, 18(3), 140–149. https://doi.org/10.1177/10883576030180030201

    Article  Google Scholar 

  • Sanderson, H. (2000). Person Centred Planning. York: Joseph Rowntree Foundation.

    Google Scholar 

  • Sandvin, J. (1996). The transition to community services in Norway. Deinstitutionalization and Community Living (pp. 185–196). Springer, Boston, MA. https://doi.org/10.1007/978-1-4899-4517-4_12

  • Shaddock, A. J., & Zilber, D. (1991). Current service ideologies and responses to challenging behaviour: Social role valorization or vaporization? Australia and New Zealand Journal of Developmental Disabilities, 17(2), 169–175. https://doi.org/10.1080/07263869100034381

    Article  Google Scholar 

  • Simplican, S. C., Leader, G., Kosciulek, J., & Leahy, M. (2015). Defining social inclusion of people with intellectual and developmental disabilities: An ecological model of social networks and community participation. Research in Developmental Disabilities, 38, 18–29. https://doi.org/10.1016/j.ridd.2014.10.008

    Article  Google Scholar 

  • Smull, M. W., & Harrison, S. B. (1992). Supporting people with severe retardation in the community. Alexandria, VA: National Association of State Mental Retardation Program Directors.

    Google Scholar 

  • Stancliffe, R. J., & Lakin, K. C. (1997). Analysis of expenditures and outcomes of residential alternatives for persons with developmental disabilities. American Journal on Mental Retardation, 102(6), 552–568. https://doi.org/10.1352/0895-8017(1998)1022.0.CO;2

  • Test, D. W., Karvonen, M., Wood, W. M., Browder, D., & Algozzine, B. (2000). Choosing a self-determination curriculum: Plan for the future. TEACHING Exceptional Children, 33(2), 48–54. https://doi.org/10.1177/004005990003300207

    Article  Google Scholar 

  • Tøssebro, J. (2004). Policy evaluation and national surveys of the living conditions of people with intellectual disabilities in Norway. Journal of Intellectual Disability Research, 48(4), 486–507.

    Google Scholar 

  • Tøssebro, J. (2016). Scandinavian disability policy: From deinstitutionalisation to non-discrimination and beyond. ALTER - European Journal of Disability Research/Revue Européenne de Recherche Sur Le Handicap, 10(2), 111–123. https://doi.org/10.1016/j.alter.2016.03.003

    Article  Google Scholar 

  • Turnbull, A., & Turnbull, R. (2001). Self-determination for individuals with significant cognitive disabilities and their families. Journal of the Association for Persons with Severe Handicaps (JASH), 26(1), 56–62.

    Article  Google Scholar 

  • Vandercook, T., York, J., & Forest, M. (1989). The McGill Action Planning System (MAPS): A strategy for building the vision. Journal of the Association for Persons with Severe Handicaps, 14(3), 205–215. https://doi.org/10.1177/154079698901400306

    Article  Google Scholar 

  • Vann, B. H., & Å iÅ¡ka, J. (2006). From ‘cage beds’ to inclusion: The long road for individuals with intellectual disability in the Czech Republic. Disability & Society, 21(5), 425–439. https://doi.org/10.1080/09687590600785811

    Article  Google Scholar 

  • Verdonschot, M. M. L., de Witte, L. P., Reichrath, E., Buntinx, W. H. E., & Curfs, L. M. G. (2009). Community participation of people with an intellectual disability: a review of empirical findings. Journal of Intellectual Disability Research, 53(4), 303–318. https://doi.org/10.1111/j.1365-2788.2008.01144.x

    Article  Google Scholar 

  • Wehmeyer, M. L. (1999). A functional model of self-determination: Describing development and implementing instruction. Focus on Autism and Other Developmental Disabilities, 14(1), 53–61. https://doi.org/10.1177/108835769901400107

    Article  Google Scholar 

  • Wehmeyer, M. L. (2005). Self-determination and individuals with severe disabilities: Re-examining meanings and misinterpretations. Research and Practice for Persons with Severe Disabilities, 30(3), 113–120. https://doi.org/10.2511/rpsd.30.3.113

    Article  Google Scholar 

  • Wehmeyer, M. L., Agran, M., & Hughes, C. (2000). A national survey of teachers’ promotion of self-determination and student-directed learning. The Journal of Special Education, 34(2), 58–68. https://doi.org/10.1177/002246690003400201

    Article  Google Scholar 

  • Wehmeyer, M. L., Kelchner, K., & Richards, S. (1996). Essential characteristics of self-determined behavior of individuals with mental retardation. American Journal on Mental Retardation, 100(6), 632–642.

    Google Scholar 

  • Wolfensberger, W. (1972). The principle of normalization in human services. Toronto, ON: National Institute on Mental Retardation.

    Google Scholar 

  • Wolfensberger, W. (1983). Social role valorization: A proposed new term for the principle of normalization. Mental Retardation, 21(6), 234–239.

    Google Scholar 

  • Wolfensberger, W. (2000). A brief overview of social role valorization. Mental Retardation, 38(2), 105–123. https://doi.org/10.1352/0047-6765(2000)0382.0.CO;2

  • Wood, W. M., Karvonen, M., Test, D. W., Browder, D., & Algozzine, B. (2004). Promoting student self-determination skills in IEP planning. TEACHING Exceptional Children, 36(3), 8–16. https://doi.org/10.1177/004005990403600301

    Article  Google Scholar 

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Authors and Affiliations

  1. MIND Institute, University of California Davis, Sacramento, CA, USA

    Maya Matheis PhD

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  1. Maya Matheis PhD
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  1. Department of Psychology, Louisiana State University, Baton Rouge, LA, USA

    Johnny L. Matson

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Matheis, M. (2019). Philosophy of Care. In: Matson, J.L. (eds) Handbook of Intellectual Disabilities. Autism and Child Psychopathology Series. Springer, Cham. https://doi.org/10.1007/978-3-030-20843-1_5

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