1,646
Views
9
CrossRef citations to date
0
Altmetric
Articles

The changing face of parent advocacy: a long view

, , &
Pages 1366-1386 | Received 28 Aug 2016, Accepted 13 Apr 2017, Published online: 24 May 2017

References

  • Andrews, J. 1998. “Begging the Question of Idiocy: The Definition and Socio-Cultural Meaning of Idiocy in Early Modern Britain: Part 1.” History of Psychiatry 9 (33): 065–95. 10.1177/0957154X9800903306
  • Anonymous Family Carer. 2008. “In Control? Making Sure We’re Not out of Control!.” Some Issues for People Considering a Direct Payment or Individualised Budget the Journal of Adult Protection 10 (3): 14–22.
  • Bedfordshire Mental Deficiency Papers. 1937. Vol. 23 22/4
  • Bertilsdotter Rosqvist, H., C., Brownlow, and L. O’Dell. 2015. “An Association for All’ – Notions of the Meaning of Autistic Self-Advocacy Politics within a Parent-Dominated Autistic Movement.” Journal of Community & Applied Social Psychology 25: 219–231 (2015) Published online 7 October 2014 in Wiley Online Library. wileyonlinelibrary.com. DOI: 10.1002/casp.2210
  • Bibby, R. 2013. “‘I Hope He Goes First’: Exploring Determinants of Engagement in Future Planning for Adults with a Learning Disability Living with Ageing Parents. What Are the Issues?” British Journal of Learning Disabilities 41 (2): 94–105. 10.1111/bld.2013.41.issue-2
  • Bringing Us Togetehr. 2016. Stronger Together Report. Accessed August 5, 2016. http://bringingustogether.org.uk/wp-content/uploads/2016/07/Stronger-Together-June-2016.pdf
  • Bromham Joint Board Papers. 1944. “Bedfordshire Library, Archives and Records JBV 14/I.”
  • Brownlee-Chapman, C., R. Chapman, C. Eardley, S. Forster, V. Green, H. Graham, E. Harkness, et al. forthcoming. “Between the Personal and the Public: Collaboratively Designing an Inclusive Archive of Learning Disability History.” International Journal of Heritage Studies.
  • Buchanan, I., and J. Walmsley. 2006. “Self-Advocacy in Historical Perspective.” British Journal of Learning Disabilities 34 (3): 133–138. 10.1111/bld.2006.34.issue-3
  • Bylov, F. 2006. “Patterns of Culture & Power after ‘the Great Release’: The History of Movements of Subculture & Empowerment among Danish People with Learning Difficulties.” British Journal of Learning Disabilities 34 (3): 139–145. 10.1111/bld.2006.34.issue-3
  • Castles, K. 2004. “‘Nice, Average Americans’: Postwar Parents’ Groups and the Defense of the Normal Family.” In Mental Retardation in America, edited by S. Noll and J. Trent, 351–368. New York: New York University Press.
  • Cooper, M. 1997. “Mabel Cooper's Life Story.” In Forgotten Voices, edited by D. Atkinson, M. Jackson, and J. Walmsley, 21–34. Kidderminster: British Institute of Learning Disabilities.
  • Cooper, V., and C. Ward. 2011. “Valuing People: Family Matters Ten Years on.” Tizard Learning Disability Review 16 (2): 44–48. 10.5042/tldr.2011.0168
  • Davys, D., D. Mitchell, and C. Haigh. 2014. “Futures Planning: Adult Sibling Perspectives.” BJLD 43: 219–226.
  • Department of Health. (2001). Valuing People: A New Strategy for Learning Disability in the Twenty-First Century. London: HMSO.
  • Donges, G. 1982. Policy Making for the Mentally Handicapped. Aldershot: Gower Publishing Company Limited.
  • Dumbleton, S. 2013. “Goodies and Baddies: Equivocal Thoughts about Families Using an Autoethnographic Approach to Explore Some Tensions between Service Providers and Families of People with Learning Disabilities.” Ethics and Social Welfare 7 (3): 282–292. 10.1080/17496535.2013.815789
  • Fitzroy. 2015. Who Will Care after I’m Gone: An Insight into Pressures Facing Parents of People with Learning Disabilities. http://www.fitzroy.org/wp-content/uploads/Who-will-care-after-im-gone.pdf
  • Foley, S. 2012. “Reluctant Jailers Speak out: Parents of Adults with down Syndrome Living in the Parental Home on How They Negotiate the Tension between Empowering and Protecting Their Intellectually Disabled Sons and Daughters.” BJLD 41: 301–311.
  • Foundation for People with Learning Disabilities. 2012. Learning Disability Statistics: Support. http://www.learningdisabilities.org.uk/help-information/Learning-Disability-Statistics-/187696/
  • Glendinning, C., W. Mitchell, and J. Brooks. 2015. “Ambiguity in Practice? Carers' Roles in Personalised Social Care in England.” Health and Social Care in the Community 23 (1): 23–32. 10.1111/hsc.12123
  • Goldring, M. 2009. “Hospital Closure Marks a Milestone.” Accessed December 30 2015. http://www.theguardian.com/society/joepublic/2009/may/01/hospital-closure-care
  • Harkes, M., M. Brown, and D. Horsburgh. 2014. “Self-Directed Support Policy: Challenges and Possible Solutions.” British Journal of Learning Disabilities 42 (3): 169–176. 10.1111/bld.2014.42.issue-3
  • Harris, R. 2005. “I Don’t Think I’ll Give up until I Die.” In Witnesses to Change: Families, Learning Difficulties and History, edited by S. Rolph, D. Atkinson, M. Nind, and J. Welshman, 47–54. Kidderminster: BILD.
  • Hatton, C. 2015. online blog The Disappeared 2/11/15. Accessed November 30, 2015. http://chrishatton.blogspot.co.uk/2015/11/the-disappeared.html.
  • HealthWatch Oxfordshire. 2014. A Local Experience of National Concern. Oxford: HealthWatch Oxfordshire.
  • House of Lords and House of Commons Joint Committee on Human Rights. 2008. A Life like Any Other? Human Rights of Adults with Learning Disabilities. London: Crown Office.
  • Ingham, N. 2013. Organisational Change and Resistance: An Oral History of a Long-Stay Institution for People with Learning Difficulties. Unpublished PhD Thesis, Open University, Milton Keynes
  • Jackson, M. 2001. The Borderland of Imbecility: Medicine, Society and the Fabrication of the Feeble Mind in Late Victorian and Edwardian England. Manchester, NH: Manchester University Press.
  • Jackson, R. 2015. “Who Cares?” Accessed December 30, 2015. http://www.centreforwelfarereform.org/library/by-az/who-cares1.html
  • Jingree, T., and W. Finlay. 2012. “‘It’s Got So Politically Correct Now’: Parents’ Talk about Empowering Individuals with Learning Disabilities.” Sociology of Health and Illness 34 (3): 412–428. 10.1111/shil.2012.34.issue-3
  • Johnson, K., and J. Walmsley. 2010. Towards a Good Life for People with Intellectual Disabilities. Bristol: Policy Press.
  • Jones, G. 1986. Social Hygiene in Twentieth Century Britain. London: Croom Helm.
  • Justice for Nico. 2015. online blog. http://justicefornico.org
  • Keilty, T., and K. Woodley. 2013. No Going Back. Sheffield: Centre for Welfare Reform.
  • Langan, M. 2011. “Parental Voices and Controversies in Autism.” Disability and Society 26 (2): 193–205. 10.1080/09687599.2011.544059
  • Learning Disability Alliance. 2014. “Join the Learning Disability Alliance.” http://www.centreforwelfarereform.org/news/join-the-leaity-alliance/00171.html
  • Ledger, S. 2012. Staying Local: Support for People with Learning Difficulties from Inner London 1971-2007. unpublished PhD thesis, Open University, Milton Keynes
  • Ledger, S., S. Earle, E. Tilley, and J. Walmsley. 2016. “Contraceptive Decision-Making and Women with Learning Disabilities.” Sexualities 19 (5–6): 698–724.
  • Mazars. 2015. “Independent Review of Deaths of People with Learning Disabilities or Mental Health Problems in Contact with Southern Health NHS Foundation Trust April 2011- March 2014.” https://www.england.nhs.uk/south/wp-content/uploads/sites/6/2015/12/mazars-rep.pdf
  • Mencap. 2007. Death by Indifference. Accessed December 31, 2015. https://www.mencap.org.uk/death-by-indifference
  • Mencap. 2012. “Stuck at Home”. https://www.mencap.org.uk/news/article/stuck-home
  • Mencap. 2015. Annual Report 2014-15. Accessed August 29, 2015. https://www.mencap.org.uk/sites/default/files/documents/2015.013%20Annual%20Report_1.pdf.
  • Michael, J. 2008. Healthcare for All. London: Department of Health.
  • Moss, F. 2015. online blog. Accessed December 12, 2015. http:/FinolaMoss.wordpress.com
  • National Audit Office. 2015. Care Services for People with Learning Disabilities and Challenging Behaviour. London: NAO.
  • Neary, M. 2014a. https://markneary1dotcom1.wordpress.com/2014/12/09/it-never-abates/
  • Neary, M. 2014b. Accessed August 15, 2016. https://markneary1dotcom1.wordpress.com/2014/12/04/card-games/
  • Neary, M. 2015a. online blog. Accessed August 12, 2016. https://markneary1dotcom1.wordpress.com/
  • Neary, M. 2015b. online blog. Accessed August 12, 2016. https://markneary1dotcom1.wordpress.com/2015/09/22
  • Neary, M. 2016. Accessed August 15, 2016. https://markneary1dotcom1.wordpress.com/2016/01/03/mr-submissive/.
  • NHS England. 2015. Transforming Care: Homes Not Hospitals for People with Learning Disabilities. https://www.england.nhs.uk/2015/10/30/homes-not-hospitals/
  • Nickson, B. 2005. “Never take no for an Answer.” In Witnesses to Change: Families, Learning Difficulties and History, edited by S. Rolph, D. Atkinson, M. Nind, and J. Welshman, 77–86. Kidderminster: BILD.
  • Orsini, M., and M. Smith. 2010. “Social Movements, Knowledge and Public Policy: The Case of Autism Activism in Canada and the US.” Critical Policy Studies 4: 38–57. 10.1080/19460171003714989
  • Power, A., R. Bartlett, and E. Hall. 2016. “Peer Advocacy in a Personalised Landscape: The Role of Peer Support in a Context of Individualised Support and Austerity.” Journal of Intellectual Disability 20 (2): 183–193.
  • Prior, A. 2015. Defining Moments. Presentation to Social History of Learning Disability Conference, Milton Keynes, June 2015. http://www.open.ac.uk/health-and-social-care/research/shld/conferences/conference-2015
  • Rolph, S. 2002. Reclaiming the past: The Role of Local Mencap Societies in the Development of Community Care in East Anglia 1946–1980. Milton Keynes: Open University.
  • Rolph, S. 2005a. The History of Bedford Mencap. MK: Open University.
  • Rolph, S. 2005b. A Little Glamour with a Strict Tempo the History of Cambridge Mencap. Volume 1 1947–1990. MK: Open University
  • Rolph, S. 2005c. Captured on Film: The History of Norwich and District Mencap Society. MK: Open University.
  • Rolph, S., and J. Walmsley. 2002. “The History of Community Care for People with Learning Difficulties.” In Understanding Care, Welfare and Community: A Reader, edited by B. Bytheway, V. Bacigalupo, J. Bornat, J. Johnson, and S. Spurr, 53–63. London: Routledge.
  • Rolph, S., and J. Walmsley. 2006. “Oral History and New Orthodoxies: Narrative Accounts in the History of Learning Disability.” Oral History Spring: 81–91.
  • Rolph, S., D. Atkinson, M. Nind, and J. Welshman, eds. 2005. Witnesses to Change: Families, Learning Difficulties and History. Kidderminster: BILD.
  • Roulstone, A. 2015. “Personal Independence Payments.” Welfare Reform and the Shrinking Disability Category Disability and Society 30 (5): 673–688.
  • Runswick- Cole, K. 2012. “Review of Social Policy and Social Capital: Parents and Exceptionality 1974–2007, by Dora S.” Bjarneson, Disability and Society 27 (7): 1044–1045. 10.1080/09687599.2012.722413
  • Ryan, S. 2014. online blog. Accessed December 12, 2015. https://mydaftlife.wordpress.com/category/laughing-boy-tales/death/page/3/
  • Ryan, S. 2015a. online blog. Accessed August 15, 2016. https://mydaftlife.wordpress.com/2015/11/
  • Ryan, S. 2015b. online blog Summary. Accessed August 15, 2016. https://mydaftlife.wordpress.com/summary/
  • Ryan, S. 2015c. Accessed December 12, 2015. http://justiceforlb.org/
  • Ryan, S., and K. Runswick-Cole. 2008. “Repositioning Mothers: Mothers.” Disabled Children and Disability Studies Disability and Society 23 (3): 199–210.
  • Sanctuary, G. 1981. After I’m Gone What Will Happen to My Handicapped Child. London: Souvenir Press.
  • SASH. 2015. Accessed December 30, 2015. http://saveautismservicesharingey.co.uk/2015/11/nas-warns-of-roundway-terrible-loss-ham-high/
  • Scott, J. W. 2002. “Women’s History.” In New Perspectives on Historical Writing, edited by P. Burke 2nd ed., 43–70. Cambridge: Polity Press.
  • Scottish Executive. 2000. The Same as You? A Review of Services for People with Learning Disabilities. Edinburgh: Scottish Executive.
  • Scottish Government. 2009. Personalisation: A Shared Understanding/Commissioning for Personalisation/a Personalised Commissioning Approach to Support and Care Services. Edinburgh: Scottish Government. Accessed April 9 2015. http://www.gov.scot/Resource/Doc/269193/0080033.pdf
  • Sharpe, J. 2002. “History from below.” In New Perspectives on Historical Writing, edited by P. Burke 2nd ed, 25–42. Cambridge: Polity Press.
  • Shennan, V. 1980. Our Concern: The Story of the National Association for Mentally Handicapped Children and Adults. London: National Association for Mentally Handicapped Children and Adults.
  • Simons, K. 1992. Sticking up for Yourself: Self Advocacy and People with Learning Difficulties. York: Joseph Rowntree Foundation.
  • Thomson, M. 1998. The Problem of Mental Deficiency in England and Wales, 1913–1946. Oxford: Clarendon Press. 10.1093/acprof:oso/9780198206927.001.0001
  • Tilley, E. 2006. “The Voluntary Sector.” In Community Care in Perspective: Care, Control and Citizenship, edited by J. Welshman and J. Walmsley, 219–232. London: Palgrave MacMillan.
  • Tilley, E. and H. Graham 2016. “Exploring a Living Archive of Learning Disability History.” Presentation to the 2016 ‘Theorising the Mundane’ Normalcy Conference, Manchester.
  • Tilley, E., S. Earle, J. Walmsley, and D. Atkinson. 2012. “‘The Silence is Roaring’: Sterilization, Reproductive Rights and Women with Intellectual Disabilities.” Disability and Society 27 (3): 413–426. 10.1080/09687599.2012.654991
  • University of Bristol. 2013. Confidential Enquiry into Premature Deaths of People with Learning Disabilities (CIPOLD). Bristol: University of Bristol. Accessed December 31, 2015. http://www.bris.ac.uk/cipold/
  • Veck, W. 2002. “Completing the Story: Connecting Relational and Psychological Processes of Exclusion.” Disability & Society 17 (5): 529–535.
  • Walmsley, J. 2000. “Straddling Boundaries: The Changing Role of the Voluntary Sector.” In Crossing Boundaries: Change and Continuity in the History of Learning Disability, edited by L. Brigham, D. Atkinson, M. Jackson, S. Rolph and J. Walmsley, 103–122. Kidderminster: BILD.
  • Walmsley, J. 2014. Interim Evaluation of Changing Scenes Oxford Family Support Network. Unpublished Evaluation Report.
  • Walmsley, J. 2015. Final Evaluation of Changing Scenes Oxford Family Support Network. unpublished Evaluation Report.
  • Walmsley, J. 2016. “One Voice.” Community Living July/August 29 (4): 12–13.
  • Welshman, J., and J. Walmsley, eds. 2006. Community Care in Perspective: Care, Control and Citizenship. London: Palgrave MacMillan.
  • Williams, P., and B. Schoultz. 1982. We Can Speak for Ourselves. London: Souvenir Press.
  • Winance, M. 2007. “Being Normally Different? Changes to Normalization Processes: From Alignment to Work on the Norm.” Disability & Society 22 (6): 625–638. 10.1080/09687590701560261

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.