Here is my little piece of it. I hope it does positive justice to people with profound intellectual and multiple disabilities, enhancing understanding, respect and consideration of them and those people who support them.
In 2001 Judith Samuel and Marie Pritchard from Oxfordshire UK wrote an article called the The Ignored Minority: Meeting the Needs of People with Profound Learning Disability, in which they outlined the development of a specialist service focusing on the needs of people with PIMD. Nearly ten years later I thought I’d look at where the service is at. It was great to see that they appear to be going strong and have published some of their tools online (e.g. pre hearing screening, continence audit, comfort assessment, and intensive interaction work). Very handy.http://www.oldt.nhs.uk/aboutus/ourservices/community/MDRTResourceCentre.aspx
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.
There is a new resource out on supporting people who receive nutrition through gastrostomy. I haven’t had a look at it yet, but the short snippet on the website looks good. Will let you know more when I’ve had a good look.