Age-appropriateness: Enabler or barrier to a good life for people with profound intellectual and multiple disabilities?

I've just published a new article on the problems with age-appropriateness concept. Hope it gets people talking about the pros and cons, rather than just accepting that because policy says it has to be it has to be.
Forster, S. (2010). Age-appropriateness: Enabler or barrier to a good life for people with profound intellectual and multiple disabilities? Journal of Intellectual and Developmental Disability, 35, 129-131. doi: 10.3109/13668251003694606

Feedback from Master Class

Last Friday I went to the Master Class at Latrobe Uni by Jim Mansell about his recent report "Raising our sights: Services for adults with profound intellectual and multiple disabilities".
There was probably about 50 people there, with lots of people from Yooralla and a handful of therapist colleagues.
Jim did an overview of the report, then showed a DVD that goes with it (I'm trying to get hold of this), and then we did small group discussion on themed areas and their relationship to Victoria.
It was great to hear someone being specific and using the term profound intellectual and multiple disability, which I think does much to ensure a shared understand of the group and launch off lobbying. Jim was also very good at explaining the context of the report - it is written for policy makers, in language that hopefully they can understand and act upon - it is not a practice guide.
If you want to have a look at the report you can download it from http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_114347.pdf. The video is supposed to be linked in the future - it will be an excellent resource showing some good big scale practice (e.g., use of personal funding for shared accommodation) and small scale practice (e.g., some really nice interactions with the people with PIMD)
sheri

upcoming event - Raising Our Sights

Cross posting this event that might be of interest (related to below mentioned report)
Raising our sights: services for adults with profound intellectual and multiple disabilities
Professor Jim Mansell
Friday 16 April 2.00pm – 5.00pm
Presented by Professor Jim Mansell, Director of the Tizard Centre, University of Kent
Implementation of new government policy for people with intellectual disabilities in England ('Valuing People') after 2001 has not made sufficient progress for people with more complex needs. A revision of the policy has identified this ('making it happen for everyone') as a goal. One of the groups identified as not receiving better services quickly enough are adults with profound intellectual and multiple disabilities. This master class describes the results of a review of services for adults with profound intellectual and multiple disabilities and its recommendations for action. Participants in the master class will have the opportunity to assess Victorian policy and practice in the light of the issues identified.
Enquiries to Professor Christine Bigby, C.Bigby@latrobe.edu.au - bookings essential

Learning from mistakes abroad

Toward the end of last year Beverly Dawkins published the following article: Dawkins, B. (2009). Valuing Tom: will Valuing People Now change the lives of people with profound and multiple learning disabilities? Tizard Learning Disability Review, 14(4), 3-12.
It is a response to the UK Valuing People Now policy shift and its impact on people with PIMD in the UK. It highlights the many ways in which the current policy has let down people with PIMD:
- decreased access to day services
- poor planning
- continued discrimination in health context leading to uneccessary pain and, at times, death
- continued inadequate access to advocacy
- ...
New initiatives attempting to improve the lives of people with PIMD in the UK are highlighted: Emerson's demographic study, Mencap's various studies...
Although this is based in the UK, I believe this is highly relevent in the Australian context, both in terms of current and future issues.

Paradigms and pragmatics

I'm busily working on my thesis. Read this quote, which I thought was worth sharing.
“Although issues such as community-based supports, quality of life, and normalization remain equally important to nonambulatory persons with PMR [profound mental retardation], a failure to plan for their day-to-day needs can result in decreased access to appropriate health-care services, deterioration in functioning, and overreliance upon a group of poorly trained and isolate caregivers”
- Kobe, F. H., Mulick, J. A., Rash, T. A., & Martin, J. (1994). Nonambulatory persons with profound mental retardation: Physical, developmental, and behavioral characteristics. Research in Developmental Disabilities, 15(6), 413-423. doi: 10.1016/0891-4222(94)90026-4