Cameron April 2018
Australia is in the process of transferring into a new federal funding scheme, for people living with disabilities aged 0-65, called the NDIS. (National Disability Insurance Scheme) We live in Western Australia and our state was the last state to sign up to this new scheme and in doing so relinquished direct responsibility for funding and service provision to everyone living in our state with disabilities. The uncertainty, distrust and fear that has built up about the NDIS is enormous. You read horrible stories of people becoming suicidal over the cuts and major negative impacts the NDIS has had on their lives and then you read happy stories about how people who have never had funding now have a new lease on life and are able to leave their homes and integrate into their communities.
Our local community does not transition into the NDIS until after July but NDIS has been impacting our lives for several years now. The state trialled the federal (NDIS) and a new state system (WANDIS) side by side, whilst still maintaining their old funding system as well, to see which would be best. Every other day, in all three systems, funding priorities were changed, rules and protocols were changed and what one person said was happening another person said it wasn't. It has been so confusing and the disability community became so divided over which funding system was the best. But ultimately it was the state governments decision and they decided to join the federal system.
As the transition date draws closer and closer my anxiety is growing greater and greater. A couple of months ago Cameron's support funding was reviewed and a new plan put in place, still under the state system. For once I stood up and didn't accept what we were offered, instead I argued our case for what Cameron needed. Cameron needed more funding for support workers to look after his needs and take him out of his home and away from his Mum. He was clearly letting us know that he didn't want to sit around home with me, bored and he didn't want me taking care of his personal needs. Fair enough, he is 22 years old and he needs his independence, as much as it is possible.
With support from our wonderful LAC (Local Area Co-ordinator - a government employee), who had taken the time to get to know Cameron and our family, we sat down and figured out what Cameron's life should look like at this stage and we put together a plan with his best interests at the centre of it. The process took weeks as our plan was rejected and rewritten and arguments were made, presented and argued against but eventually we came out of the process with a pretty good outcome.
Cameron received a significant increase in funding and thus support to increase his independence, which means a huge improvement in his quality of life. We now have support workers coming into our home 6 days a week and Cameron is able to spend time with a Host Family once a fortnight to be completely independent from his family. We could have arranged our funding to have support 7 days a week but we have chosen to keep one day support free so I can take Cameron to therapy and to visit some of his grandparents. It's important that he maintains his family contacts and of course visits Lucy and the girls at Dolce Lucia's for morning tea each Tuesday.
We have been able to employ a third support worker which means there is now greater possibility that when one of our support workers is on leave or ill there will be another available to cover shifts. This will make a huge difference to our lives.
When dealing with funding for Cameron's needs we are never allowed to talk about our needs as a family or my needs as the main carer. It is all about Cameron and his needs. This adds enormous stress during the planning and review process because you have to be careful with how you word everything. When doing a review you need to recall every positive that has been achieved through the previous plan but when doing the plan you need to recall every negative that requires support and funding. It's an emotional roller coaster. It's draining and this time it was scary.
I was hearing of families having their funding slashed. Not cut, slashed. I was terrified this was going to happen to us because although we were receiving more than others it wasn't anywhere near enough to meet Cameron's needs because he has such high support needs. He needs constant one on one supervision and he needs assistance with everything in his life. Employing support workers is not cheap and when you have someone with such high needs you need to pay your support workers a decent wage or, fairly so, they will leave and find easier or better paid support roles. Every review/plan I have asked for higher rates of funding so I can pay my staff better. I slowly pushed the hourly rate up and this time we received a much better pay rate. I am much happier with their hourly rate, although for what they do I think they should get more.
You may have noticed I used the word staff. Yep, I am running a small business with 3 employees and I am the unpaid admin and bookkeeper. Hubby is the unpaid payroll clerk. This is serious stuff with superannuation, insurance and tax to deal with. We have shifts and timetables, time sheets and government paperwork to juggle, staff morale and support that needs to be taken care of. On top of that, our staff are in our home, they become an extension of our family unit, it is an intimate work environment. On the positive side there are cups of tea and chats, on the negative side I can't slop around in my pyjamas and have a PJ day, I'm constantly watching the clock and constantly aware of times that people are arriving and leaving. You lose a certain level of privacy and control over your life. You can't stay and have that extra cuppa or pop into that other shop you wanted to visit, you can't head off as early as you want because it's not time for the support worker to arrive yet or Cam and his support worker will be home and you have to be there. You're life is not your own.
Don't misunderstand me, we are eternally grateful for the support we are receiving but the reality is that everything comes at a cost. The reality hit home the day I realized that at my age my parents were free of day to day parenting responsibilities, their children had flown from the nest, their days were theirs to do with as they pleased. I have no end in sight.
It's coming up to the end of May so there is really only one month until NDIS starts to roll out in my community and I am having nightmares and losing sleep with the stress of the unknown. Will we be able to convey Cameron's needs to a complete stranger who will meet a charming young man who will sit politely in a meeting and not interrupt? Will we be able to convince them of the high levels of support that he needs as he smiles sweetly at them and probably hugs them? Will our funding be slashed like some many before us because the person interviewing doesn't perceive our support requests to be reasonable or necessary? (Reasonable or necessary is the catch phrase used when NDIS decide if funding is allocated or not.) Will we be able to keep our three staff and if we have to cut their hours will they stay with us or be forced to look for other work and leave? Will I cope with the added administration and book keeping required of yet another new system? Will Cameron every be able to live independently of us and when will all this uncertainty and fear stop?
I am a naturally positive thinking person, I always see the silver lining in situations but this transition is proving to be a mental challenge as we face the unknown. I'm hoping we will be at the bottom of the transfer list but at the same time the longer it takes the greater the anxiety will become. Mind you, if I never post that transfer permission letter, we will never appear on the list at all.
However, despite all of that I will not give up on my dream of Cameron living independently in his own home in our backyard with round the clock care and a meaningful life. And part of that dream might include the business idea I have come up with for Cameron but that is for another blog post, for another day.