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Choice and Empowerment

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Choice and Empowerment
Choice and Empowerment for People with a Learning Disability.

A review conducted on behalf of APEMH by John Harris, British Institute of Learning Disabilities. A shorter version of this paper has been accepted for publication by the British Journal of Learning Disabilities.

The review is designed to:

• establish a conceptual framework for examining choice and empowerment by people with a learning disability • identify instruments and protocols which have been developed to promote choice and empowerment • describe how services evaluate the role played by key-workers and services in promoting choice and empowerment and identify any protocols or ‘diagnostic’ tools which have been developed • consider outstanding issues for research and practice including the development of additional instruments and protocols.

Background

The European Convention for the protection of Human Rights and Fundamental Freedoms provides a formal code under fifteen headings giving rights to all citizens in the European Union. Although the Convention does not explicitly refer to ‘choice and empowerment’ the realisation of the these concepts are clearly implied in respect of rights covering ‘liberty and security’ ‘respect for private and family life’ and ‘freedom of thought conscience religion and ‘freedom of expression’. Similarly, the United Nations Standard Rules on the Equalisation of Opportunities for Persons with Disabilities (1993), includes 22 statements giving direction to national governments. Choice and empowerment are not specifically itemised among the 22 target areas, but they are clearly implied under headings such as ‘rehabilitation’ ‘support services’ ‘family life and personal integrity’.

The most direct appeal for services to promote choice and empowerment for people with a learning disability comes not from national and international declarations but from O’Brien’s interpretation of the philosophy of normalisation and social role valorisation.



References: Ager,A. (1990) The Life Experiences Checklist, Windsor:NFER-Nelson Ager,A Baistow, K. (1995) Liberation or regulation? Some paradoxes of empowerment, Critical Social Policy, 42, 34-46. Bewley,C. (1998) Choice and Control: Decision-Making and People with Learning Difficulties, London: Values Into Action. Dempsey I and Foreman P (1997) Toward a clarification of empowerment as an outcome of disability service provision, Journal of Intellectual Disability Research, 44, 4, 287- 303. Dunst,C. Trivette,C. and LaPointe (1994) Meaning and key characteristics of empowerment, in C. Dunst, C. Trivette and A. Deal (eds.) Supporting and Strengthening Families: Methods, Strategies and Practices, Cambriidge,MA: Brookline Emerson,E Felce,D. (1999) Enhancing the quality of life of people receiving residential support, British Journal of Learning Disabilities, 27, 1, 4-9. Grove,N. Bunning,K Porter, J and olsson,C. (1999) See what I mean: interpreting the meaning of commuication by people with sever and profoudn intellectual disabilities, Journal of Applied Research in Intellectual Disabilities, 12, 3, 190-203. Guess,D. Benson,H and Siegel-Causey,E. (1985) Concepts and issues relarted to choice-making and autonomy among persons with severe disabilities, Journal of the Association for Persons with Severe Handicaps, 10, 79-86. Houghton,J. Bronicki, G. and Guess,D. (1987) Opportunities to express preferences and make choices among students with severe disabilities in classroom settings, Journal of the Association of Persons with Severe Handicaps, 12, 18-27. Jenkinson, J. (1993) Who shall decide? The relevance of theory and research to decision-making by people with intellectual disability, Disability, Handicap and Society, 8, 4, 361-375. Kennedy,C. and Haring,T. (1993) Teaching choice making during social interactions to students with profound multiple disabilities, Journal of Applied Behaviour Analysis, 26, 63-76. Kishi, G. Teelucksing, B. Zollers, N. Parke-Lee, S. and Meyer, L. (1988) Daily decision making in community residences: a social comparison of adults with and without mental retardation, American Journal on Mental Retardation, 92, 5, 430-435. Nozaki,K and Mochizuki,A. (1995) Assessing choice making of a person with a profound disabilities: a preliminary analysis, Journal of Association of Persons with Severe Handicaps, 20, 3, 196-201 O’Brien, J Rawlings,M. Dowse,L and Shaddock,A. ( 1995) Increasing the involvement of people with an intellectual disability in choice making situations: A practical approach, International Journal of Disability, Development and Education, 42, 2, 137-153. Realon,E. Favell, E. and Lowerre, A (1990) The effects of making choices on engagement levels wit h persons who are profoundly mutliply handicapped, Education and Training in Mental Retardation, 25,299-305 Stalker, K Searle,J. (1983) Intentionality: An Essay on the Philosophy of Mind, Cambridge: Cambridge University Press Townsley,R Turnbull,H. Turnbull, A Bronick, G. Summers,J. and Roeder-Gordon,C. (1989) Disability and the Family: A Guide to Decisions for adulthood, Baltimore:Paul H Brookes. Turnbull H. (ed) (1975- 1976) Consent Handbook, Washington D.C. American Association on Mental Deficiency (No 3) Wehmeyer,M Browder,D.M. Cooper,K.J. and Lim,L (1998) Teaching adults with severe disabilities to express their choice of settings for leisure activities, Education and Training in Mental Retardation and Developmental Disabilities33,3, 228-238. Cooper,J.K. and Browder, D.M. (1998) Enhancing choice and participation for adults with severe disabilities in community-based instruction, Journal of the Association for Persons with severe Handicaps, 23,3, 252-260 Dowson,S Kearney, C., Durand, M., and Mindell,J. (1995) Choice assessment in residential settings, Journal of Developmental and Physical Disabilities, 7, 3, 203-213 Kroese,B Lindsey,P. 1996) The right to choose: informed consent in the lives of adults with mental retardation and developmental disabilities, Education and Training in Mental Retardation and Developmental Disabilities, 31,3,171-176 Malec, J Mosley,J. (1994) You Choose: A Handbook for Staff Working with People who have Learning Disabilities to promote Self-Esteem and Self Advocacy, Wisbech: LDA. North West Regional Training Group on Learning Disabilities (1995) Choice: Guidelines for Good Practice, Calderstones NHS Trust. Stancliffe,R.J. and Parmenter, T.R. (1999) The Choice Questionnaire: A scale to assess choices exercised by adults with intellectual disability, Journal of Intellectual Disability Research, 24, 2, 107-132 Sutcliffe, J Townsley,R, Howarth,J. LeGrys,P and Macadam,M (1997) Getting Involved in Choosing Staff: A Resource Pack for Staff Supporters and Trainers Working with People with Learning Difficulties. Brighton: Pavilion. Wong,J., Clare, I., Holland,A., Watson, P. and Gunn,M. (2000) The capacity of people with a ‘mental disability’ to make a health care decision, Psychological Medicine 30, 295-306.

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