My apologies for no blogs recently. The problem has been that I’ve not known where to start and I’m also experiencing some post culture shock from being in South Africa. Two weeks ago I was at the IASSID (International Association for the Scientific Study for Intellectual DIsability). At the conference the PIMD special interest research group managed to pull together a pre-conference workshop and numerous symposiums specifically looking at people with profound intellectual disabilities. Now selecting what to share is difficult, so I thought I’d side-step and instead share some quotes from Nelson Mandela that are relevent to people with PIMD.
“We accord a person dignitiy by assuming that they are good, that they share human qualitites we ascribe to ourselves”
“People are human beings, produced by the society in which they live. You encourage people by seeing good in them”
“It is what we make out of what we have, not what we are given, that separates one person from another”
“I am what I am both as a result of people who respected me and helped me, and those who did not respect me and treated me badly”
sheri
PMLD Response to Valuing People Now
The focus of PIMDA is what is happening in Australia. One of my key concerns is the lack of a cohesive body and a cohesive message for lobbying for people with PIMD in Australia.
In my reading this morning I revisited the report written in the UK by the PMLD Network in response to Valuing People Now. Valuing People is the government’s guiding document for services to people with intellectual disabilities in England and Wales. The PMLD Network submitted their concerns to the government in response to Valuing People Now outlining the particular considerations needed for making the vision a reality for people with profound intellectual and multiple disabilities. They were explicit in outlining the current situation and what needs to happen.
I strongly recommend looking at this report (http://www.mencap.org.uk/displaypagedoc.asp?id=2396) . I will however highlight some of the themes and calls for actions.
Including Everyone
– Understanding numbers and needs of people with PMLD
– Representations on boards and forums
– Recognition and standards response to health needs
Personalisation
– Real access to individual budgets of realistic cost amounts
– Priority for person centred planning
What people do
– Access to meaningful activities (not necessarily work)
– Day service access availability unless good alternatives are in place
– Skilled staff
– Planned, monitored and evaluated services with people with PIMD in mind
Better health
– Workforce able to address complex health needs
– Specialist expertise when needed
– Annual health checks and health action plans
– “Health care finance”
Housing
– Choice and control about where to live
– Trained staff in places where people want to live
– More funding for high quality, safe and supported housing
Advocacy and rights
– More advocacy for people with PMLD
– Representation and involvement in policy-making
Partnership with families
– Recognition of importance of family carers
– Access to good quality short breaks
People as local citizens
– Same rights recognition
– People being valued for who they are, beyond being “cared for”
Transitions
– Good quality transitions
Improving workforce
– Skilled sustainable workforce
– Trained staff for health, communication, and behaviour needs
– Pay reflecting additional skills of staff
UK PMLD
I have often been inspired by the actions occuring in the UK. In the UK the term PMLD (Profound and Multiple Learning Disability) is used. I frequently look to the UK when I want to learn more about a topic, get advice, or see lobbying actions. Here are a few great links in the UK:
– http://www.pmldnetwork.org/ (this is a brilliant website)
– http://www.dundee.ac.uk/pamis/
– http://www.mencap.org.uk/pmld
– http://www2.northampton.ac.uk/education/home1/cesner/pmld-link
Honouring a friend
I was thinking about a friend of mine. His name was Nim. Nim and I used to have fun together. We would have the best “da da” conversations: I’m not talking high art here, I’m talking literally we would say “da da” to each other. These were most fun in van where we could be as loud as we liked. Sometimes we’d go down to the market on the weekends. We’d roll up and down the market and I’d watch Nim smell the coffee. Sometimes we’d stop in at a stall and Nim would have a bit of a back massage. I’d watch his face screw up with the tension then suddenly release as the knot uncoiled. Then we’d go over to the grass and unhindered by OH&S I’d lift him out of his wheelchair and we’d lay around on the grass looking at the sky through the trees, playing our strange version of arm wrestles.
Nim died seven years ago. He taught me many things, but one of the things he taught me was about death; that when somebody dies part of what we miss is the person, and another part we miss is part of ourselves, who we were when we were with that person, because we can never be the same person again.
I can close my eyes and see Nim’s face and the crazy way his red hair rolled in furrows on his head particularly when he’d just had a number 2. I can close my eyes and almost feel our “da da” times together.