Exclusion and Government Funding
Something that has frustrated me lately, not only as a professional working in the disability sector, but also as a parent of a child with a complex disability, is the government's lack of support, or rather, the inequality of support given.
Last year the federal government brought in Helping Children With Autism packages for families who have a child with an Autism Spectrum Disorder under the age of 7. Families are now able to access an extra $12000 to use for extra therapies or equipment. The agency I work for are one of the providers of these packages and there has been many many issues associated with this extra funding.
Firstly, as a professional, I saw an increase in incorrectly diagnosed children. There were a number of families who actively sought a disagnosis of ASD just to get this money, despite the fact they were getting adequate early childhood intervention services. Very sad that families have to resort to that to get adequate help don't you think?
There is now the issue whereby families are effectively 'double-dipping', which means they are accessing both fee for service (through HCWA) as well as free through ECIS. This is currently contributing to longer wait lists for others, not to mention the fact that it is very confusing for families.
Just recently, Fachsia announced a new program called Better Start for Children with a Disability. This program will be similar to the HCWA packages, but will be availiable for children who: have a vision or hearing impairment, cerebral palsy, down syndrome and fragile x.
My first reaction?
WHAT THE FUCK?
Again, we are seeing a clear exclusion of a HUGE part of the population of children with disabilities. Don't get me wrong, I am very glad that there is extra money available for those who have a child with ASD, CP, DS, Fragile X or Vision/Hearing issues. Families deserve it. Children deserve it. It is great to see at least some recognition from the government that more funding is needed.
What about the children with Epilepsy? Rare syndromes? Complex medical issues? Severe undiagnosed disabilities? Children with an acquired disability due to an accident??
My list would go on.
For me, the issue is about the exclusion. The people that are being excluded are the people that need that money too!
I cannot for the life of me understand how this new initiative is going to work. I have encouraged the families that I work with to sign up for it, do whatever they need to do to say 'hey I am eligible'.
But at the end of the day, the issue will be about how to spend the money when they are getting free service anyway.
More funding needs to be put into funding equipment. More funding needs to be put into respite for carers. More funding needs to be put into supporting families right through the lifespan.
For families who have a child with a disability, the constant fighting for things that are basic necessaties can leave you utterly broken down. Why can't we have a fair system that acknowledges the needs of every individual and family? We can only hope that the NDIS addresses this, however, my hopes are not high given the inequality and exclusion that already exists.
This will be my first year participating in Blogging Against Disabilism Day. I plan on participating every year and I encourage regular readers of my blog who have blogs of their own to do the same thing!
Go here Diary of a Goldfish to check out the other posts.