Forgive me if this email is not as well constructed as it may have been if I had more time
to gather supporting information but as the deadline for submissions is tomorrow, I feel nsomething is better than nothing.
In 2009 my mother passed away and I became the legal guardian for my sister, who has Downs Syndrome.
When I first took on this responsibility, it scared me to death. My sister lives in Canberra in a purpose built group house facility. I live in QLD and work full-time. I had no idea what this new role entailed and how it might work long distance, but so far, so good.
There have been many changes over the years and the introduction of the NDIS was one of the biggest but also one of the best.
Now I have to say that NDIS is way too complicated for the average person to understand and communicating with the NDIS team at review time is worse than having to deal with Centrelink. In fact, the system is a complete shambles. No argument from me that it needs a big overhaul, that people are being paid for things that I don’t believe the scheme was ever intended to cover and providers are overcharging. I just need you to be aware of what the consequences of your decisions might be.
The house that my sister lives in provides food and lodgings for its residents but the resident needs to be self-sufficient for the most part. Any personal or social help that the residents require must be sourced by external providers. In my sister’s case that means I employ care workers to visit each day and help her to shower, take medications, do laundry, etc. They also take her to her medical appointments, exercise and physio classes. They take her shopping, pick her up from bowling on a Saturday and provide social interaction. Careplus have an after hours service in case my sister is ever in need of emergency support, for example; if she is ill. I also have someone clean her room once a month.
My sister is 55 years old and obese, despite my best efforts to correct this. Even Ozempic is having limited results. It is important I keep her as active as possible. If she were to continue to put on weight she would eventually end up bedridden and no doubt
- Would die. For this reason she attends exercise classes with an exercise physiologist 3-4 times a week and hydrotherapy once a week.
As mentioned before, the NDIS system is complicated so I rely on a plan coordinator to manage the plan and reviews and I have a plan manager to make sure invoices get paid. I do not have the knowledge or time to do this myself.
NDIS fund all these things and for that I am grateful as they are all critical elements to her health and well-being. Losing any of these big ticket items would be devastating. Without personal care her personal hygiene would suffer and she would get infections. Without exercise, her weight would increase and her health would decrease. Without caers to take her to appointments she would not be able to leave the house.
There are some supports I could give up without major impact, such as the travel allowance, money for orthotics, incontinence pads and cleaning. I am not saying she dosen’t need these things but I recognise that cuts must be made and I suspect that if every plan made some small cuts, the compound effects would be great. I would pay for these items from her personal funds.
These savings, coupled with a crackdown on what providers charge as soon as they realise it is NDIS, and a crackdown of fraud, would no doubt go a long way to improving the viability of the NDIS.
One final consideration is the aging of people like my sister. They age earlier than most of us and I have no doubt that in the not too distant future I will need to consider a higher level of care for than the current accommodation provider can give. A,normal aged care home is not going to be suitable but there are group homes with 24/7 care. This would of course mean a plan review to increase the funding. I mention this because I believe aged care to be an area lacking for the intellectually disabled. Maybe because they have not lived long enough for it to be a problem in the past but as we are all living longer, so too are they. I am not sure of the answer but I hope it is something you factor into any overhaul to the NDIS
Thank you for listening.