It is interesting to know what other countries do to develop a strategy of care of those with disabilities. Australia is just rolling out their much-awaited National Disability Insurance Scheme and James O'Brien, the Australian PWSA President, describes it here.
Greetings from Australia!
I have included a link to a short video explaining our emerging National Disability Insurance Scheme (NDIS) in Australia. The video was produced by the National Disability Insurance Agency (NDIA), the organisation that runs the NDIS.
Why are we sending you this link when you obviously can't access the NDIS if you live outside Australia?
Rolling out of the NDIS will be great for people with PWS in Australia. Prader-Willi Syndrome Australia (PWSA) believes that all Australian residents with PWS will qualify for acceptance into the Scheme (Note: Criteria for qualification do apply). Supports that were previously scarce and intermittent should, over time, become adequate to enable an 'ordinary life'.
However, this won't come without risk. Because the NDIS wants to give back to the individual with special needs their right to control their own life (individual 'choice and control'), PWSA is having to rethink our family support focus. The likely shift will be away from 'caring' for the individual in a sheltered environment to 'supporting' the individual in their community, with a huge focus on enabling them to achieving an 'ordinary life'.
What should an 'ordinary life' look like for a person with PWS? How do we deal with the many risks that stem from self empowerment (individual choice and control)? How do we enable yet minimise restrictive practices? These concepts are all up for review for PWSA. IPWSO have already taken on the complex task of steering a review into restrictive practices.
Each individual entering the NDIS will, with the assistance of their families, need to develop personal 'goals' for their funding application. While all goals will be individualised and 'person centred', PWSA is setting up a mechanism to enable the sharing of 'goal' ideas between families. Hopefully this will enable us to better understand what may be possible and what obstacles need to be overcome to enable an ordinary life.
We look forward to your input over time with this and other components of our review process. Our hope is that learnings discovered may inform the wider IPWSO community and possibly assist in formulating future international goals and standards for our broader PWS community.
Thanking you in advance for your help.
President, Prader-Willi Syndrome Association, Australia