When Quality of Life is reduced to a dollar figure

We’ve made it to 2018. That is quite a big achievement if you think about it – and I know many of my friends feel the same relief and amazement that they’ve managed to hang on for another year.

The last year was a wild rollercoaster ride for our family. We ended the year on a good note however – with hope that our BuddyBoy can stay at home with us, and that he may even be able to ‘have a life’. I mentioned in my previous blog about how supported we felt by the general public reaching out to us. Well, we also had people offering suggestions for things we could try with our boy (a lot of which we’ve been doing or have done already). One of those suggestions came from the lovely people at Irabina Autism Services.

They reached out to us to tell us about their program specifically for those who have severe behavioural issues (one of many programs and services they offer). Deb and Dr Jose came up from Melbourne to visit with us and explained their program to us, and met BuddyBoy at the same time. Their behavioural program is an intensive day program which runs during school hours, five days a week, for a minimum of 30 weeks. During this time, a team of therapists work intensively with the client in order to assess and address their needs and behaviours. Irabina is in Melbourne, which is a minimum drive of 2 hours one way – not something we could manage to do twice every day, especially for 30 weeks or more! We also wouldn’t be able to afford to stay in Melbourne for that long, particularly since BuddyBoy needs a secure environment which he cannot destroy. Irabina however, are prepared to send therapists to Bendigo to work with BuddyBoy!

They sent us a detailed proposal, giving evidence for why their program (modeled on one in the US) has a 90% success rate, and how it helps the client to be able to modify their behaviour so that they can start to re-engage in ‘normal’ activities. For BuddyBoy, it means that he might be able to return to a school, could actually go places with us, and that he might be able to tolerate having his siblings nearby. If he is able to manage his behaviours, he could take part in activities that he might enjoy, such as horse riding. At the moment this is impossible, as he will not wear clothes, will not get out of the car, won’t wear shoes or a helmet, and could abscond at any second.

Irabina also include parent training as part of their program, and offer separate family training sessions, which would help all of us to know how to cope better with his meltdowns, what to do if he attacks us, or if he starts destroying something he shouldn’t be. Of course the cost for these is additional, and the overall amount is huge! For the severe behaviours program, lasting only 30 weeks, the cost is $435,325!!!

If we need a longer time frame then it costs an additional $14,463 per week – family training courses and travel costs are not included, either. It’s a huge amount of money and there’s no way we could ever afford to pay for it. I seriously doubt that the NDIA will pay for it, either. However, we have requested they fund it, and they are in the process of considering it. Stay tuned…

Having lived with BuddyBoy for all of his 9 years of life, we know that he needs constant supervision. He needs a minimum of one person with him at all times, and often two are needed to cope with his behaviours. He is unable to participate in society at all. He cannot live happily with others, so when we get to the point of not being able to continue caring for him anymore, he will not be able to live in a group home. This means he would need to be placed into a separate house, with two support workers, 24 hours a day. Having asked around, I’m told the cost for this is roughly $1,000,000 every year. This is already being paid by the government (aka Taxpayers) for others in BuddyBoy’s situation – some as young as eight years old, who are unable to live with their families and unable to integrate into existing care homes (of which there is a lack anyway).

While I am not advocating for the return of institutions, it is obvious that our current system is not working and needs to change. The role of the NDIA was to enable people to live fulfilling lives – how can this happen if you are not happy within your own body, cannot tolerate other people in your vicinity, and nobody can afford the huge cost to look after you? Shouldn’t the NDIA be proactive in funding therapies like those offered by Irabina, which have over the last seven years had a 90% success rate in reducing severe behaviours? Even if the total costs come to $1M for the entire program, that would be a small price to pay for the subsequent improvement of quality of life for BuddyBoy and all of our family. It would save millions in the long term if he is not having to be placed into a separate home for the rest of his life, but could instead be living happily in a group home. It would enable Hubby and I to actually earn some income and thus pay taxes, rather than having to rely on supplementing our income with welfare payments, because we need to be there for BuddyBoy in a full-time capacity. It would allow us to help our other children reach their own potential, so they could not only lead active lives, but also start contributing to the community, rather than having to rely on the community to support them.

So my question now is to the NDIA: “Are you looking at how much it’s going to cost you in the short term, or how much it will improve BuddyBoy’s Quality of Life long-term?”