Hi, my name is Ashley. I am a 23 year old boy with PWS. Life is pretty good down here. I live out of home in shared supported accommodation with 4 older men who have various special needs. There are 3 people supporting us during the day and one awake support worker at night. The kitchen cupboards and the front door are locked and I try my best to keep the carers busy by constantly checking the locks and by getting up many times during the night! We often have unfamiliar staff who don't understand PWS and me and my flat mates also fight a fair bit which can make me very sad.
We all go to a day program from 9-3.00pm during week days where we study, do some volunteer work and have fun. My favourite is doing the paper round where we stuff letterboxes with those beautiful junk mail catalogues! I spend most Saturday nights with mum or dad and go for long walks, bike rides, swims (20 laps of the 25 metre pool) or window shopping.
My disability pension from the Australian Federal Government pays for my food and rental and subsidises part of my day program, with just a few dollars left over for clothes and outings. The house and day program support workers are funded by the State Government. Not everyone in Australia has these supports, mum and dad have had to fight hard to get them for me. However, things are about to change. Australia is commencing a new National Disability Insurance Scheme (NDIS) which may make support funding more available for other people with PWS.
The NDIS will work something like this. Everyone in Australia will pay a small insurance premium in their taxes. If they are born with or become significantly disabled, and the disability is lifelong, they can apply to the NDIS to receive supports that are ‘reasonable and necessary’ to live an ‘ordinary life’. The scheme will not pay for the ‘extraordinary’ and the supports must be ‘value for money’. Perhaps another way to explaining it; this is a bit like an extension of our national health system – NDIS pays for supports on top of healthcare.
Once I get my NDIS funding I hope to make some improvements in my life. I would like to live in a home designed specifically for people with PWS and I would like to find more work (paid or voluntary). Don't get me wrong, life is still pretty hard for me with the day-to-day challenges of living with PWS, however, on balance I feel fortunate that I am able to access many supports. Yes, life is pretty good here down under! I also recognise that many people may be finding it much harder in other countries and I urge readers of this post to consider donating to the great work of IPWSO in helping people across the globe to improve their life by clicking HERE.
Ashley and James (father)