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.
Yup, yup, yup and yup!! I totally agree. I also don't like some of the age limits placed on these programs. I'm all for early intervention, don't get me wrong!, but my daughter, for example, would benefit hugely from intensive "intervention" at the moment, due to her seizures and recent growth leaving her physically far less capable than she once was, but she's not eligible because she's 12. The enthusiasm for early intervention makes me feel a little like we give up after a kid hits 4 or 5, too.ReplyDelete
Why not make eligibility based on...oh, I don't know...need? I hate that we live in a society that provides so little money for these essential services that we have to limit who gets them.
Great post! I've posted for BADD today, too.
Selene- We are facing the same kinds of issues with Ryley. He is 9, and in desperate need of some extra therapy right now, as well as needing a new stroller/wheelchair, and it would be nice to see him with an ipad or communication device. I can access private OT or Speech through the Chronic Disease Management Plan thingys, but even then there is a wait for services!!ReplyDelete
The system is just unfair.
I am off to check out your post!!
Great post Anna! You can read mine for BADD2011 here if you like: http://www.workingatperfect.com/2011/05/blogging-against-disablism-day-steps.htmlReplyDelete
Thanks Carl! Off to check our your post now!ReplyDelete
Great post Anna... I heard about the Better Start Initiative recently too, At first I thought 'Great' the government is finally doing more. But as I looked further into it, I thought 'You have to be joking' they are limiting it too only a handful of disability categories such as DS, CP, Fragile X, and hearing & vision impared. This will still leave many children falling through the cracks and not having access to such valuable money that will go along way in assisting with their development. It frustrates me when the government has a endless money supply to fund things like the grand prix, silly giant wheel things in the city that dont even work, etc... you get my point. The goverment need to do more and listen to parents and carers about what their needs are for them and their childrenReplyDelete
I also wonder what happens when Ellie turns 6 and is not eligible for ECIS any more. Is that it, do we give up at that point.... No.... of course not.. But again, thats they way it looks
I too am hoping the NDIS will be a positive move forward, but have serious doubts
Great post. The struggle for equipment and care is something our family deals with for my nephew. It's exhausting for my sister and I feel guilty that I need things fir my disability and can't help more.ReplyDelete
Boy Child has ASD but was diagnosed before the funding was available. There's a whole new bunch of people currently getting $12,000 to spend but only on approved providers etc. Waht happens when that fundign is gone? The waiting list for the government provided services jumps again? Because I feel as though the parents with recent ASD diagnosies are beign set up for a major fall.
I hate teh fact that the government picks and chooses what diabilities or needs are the ones that are okay to support (well not okay but maybe politically beneficial to support) and the others are left out.
How can they make those decisons? Sorry X we aren't catering for you this year try again next time?
Melissa- It becomes so hard once kids leave the comfort of ECIS. There is stuff out there, but knowing where to look is very difficult. Would Ellie qualify for the Best Start under vision?? I would be pushing for it!!ReplyDelete
Ruth- Welcome to my blog. It is frustrating that people have to struggle to get the basic things that they need. I hate how little value is placed on the lives of people with a disability by our governments!
E.-ARGH! You make a very good point. Families are being set up to fail when all that money is gone. I have seen that happen too. I personally think that it is great to see extra funding for families. But to pick and choose is just not fair.