Just because it is, doesn’t mean it should be.

I watched the movie ‘Australia’ last month and one line from the movie has been playing over in my mind since I watched it. It was said the first time by Nicole Kidman’s character and then it was said again later in the movie by Hugh Jackman’s character.

The memorable line: ‘Just because it is, doesn’t mean it should be.’

In the disability system in Western Australia I have experienced many instances of ‘just because it is, doesn’t mean it should be.’ I have a top 20 list of things I would like to see changed, improved or addressed – it will be coming to you in two instalments. This is the original top ten post and a sequel will be released shortly…!

  1. ACROD WA. Please refer to this picture below re issuing parking permits!photo (9)If there are not enough car bays currently available then the State planners need to make more available. The inability to find ways to cater for the sheer number of families with autism who should have this car bay available to them is no excuse…find a way…please… pretend it’s your child who has had too many close shaves on busy roads and car parks…especially before asking if I have tried ‘education’ to address the running off behaviours my son has (someone at ACROD WA actually said that to me!). Then check out http://www.awaare.org
  2. Medicare. Seriously somebody from this office needs to get in contact with me! The list of problematic areas in this ‘system’ in relation to autism and disability are truly staggering. I often find myself asking if the people who made up these ‘rules’ actually have children, let alone children with a disability. I won’t go into ALL the boring details… here are just a few of them…Do we really need to have the ‘client’ at every consult to claim Medicare?; Do we really need to go see the Paediatrition and/or GP every time we want a referral to a Medicare-rebated allied health service?; Does there really need to be a such a limited cap on the number of allied services available per year or per a lifetime?; Do the gaps need to be so big between the amount Medicare rebates and what allied health providers actually charge?… etc and so on… and while on the topic of ridiculously large gaps…
  3. Private health insurance could re-think a few things also…the gaps are insane for allied health services…and again complicated enough so that everyone stops listening two sentences in to someone (ie-me) trying to point out the flaws! Also if private health could kindly provide some insurance cover for ABA therapy and other evidence based therapies for autism that would be fantastic too!
  4. State funded service providers. I sent the Disability Services Commission (DSC) of WA a letter on this issue 2.5 years ago. My desire is to see a greater range of state funded service providers available both for early intervention and for school aged services. This would give parents greater choice, and help to reduce waiting lists…which, by all accounts, seem to be too long. I would also love to see DSC make life easier for service providers wanting state funded placements by making the application process and times to apply less convoluted and more frequent. With most of the service providers having approval for federal funding (FaHCSIA) maybe common sense could prevail and all approved FaHCSIA providers could be made eligible for state funding also… and thus cut down on the paperwork!
  5. Which brings me to the issues with FaHCSIA funding/and Better Start funding. This funding system needs its ‘crinks’ ironed out rather urgently! The main problem being the age cut off for funding. It just makes me want to cry every time I hear about another family who ‘just missed out’ with the cut-off age, and then hear how long they had to wait to get that diagnosis and how many times they were told ‘let’s just wait and see’. Also the amount of money that is given to every child often does not match the actual needs of that child. Sometimes it does and that’s great! But somebody needs to be reminded again that autism is a spectrum and when it comes to dishing out funds that are supposed to make a difference- it is not a level playing field. For some $6,000 a year for two years changes the child’s life dramatically for the better, for others it is a tiny drop in the ocean. Some families in rural areas often do not have anywhere to spend this funding. Its also a problem having to wait until a new financial year to access the second instalment of funds, which leads to gaps in services and diminished outcomes for the child. Still on the FaHCSIA issue…what in the world is with the two year limit on funding?! Big mistake right there, HUGE. I have never met a family who has a child with autism who no longer needed any intervention after two years-not one.
  6. Expanding the Autism Advisor program to include an Autism Response Team. Professionals who can actually go into the family home and provide intensive (and even after hours) in- home parent training and consultation, plus support for community outings, challenging behaviours and accessing services.
  7. Local Area Co-ordinator’s (LAC’s). They seem to have massive case loads and a huge variation in service delivery for families. I personally LOVE my LAC. However, feedback on the ground seems to be that A LOT of parents have no idea who LAC’s are, what they do, what they can offer and what on earth to ‘ask’ for or about when they do receive a visit. Maybe the role of the LAC could be better promoted and clarified…so everyone can experience a level of satisfaction with their LAC. I think having some idea about autism should be a pre-requisite for this job. Also LAC’s having the ‘power’ to decide who is ‘needy’ enough for their services and who is not seems…well…wrong.
  8. ‘The wait and see’ approach really needs to be revised when it comes to assessing young children with autism. If the child is deemed to be ‘at risk’ then services and/or parent training should begin. What exactly are we waiting for? Autism is not rare, it is common. It is also serious if not addressed and it’s also not harmful for a typical child to receive intervention services. Every research study ever conducted points to better outcomes for early intervention. So don’t say ‘wait and see’, instead say ‘ let’s get to work’ and ‘here’s what you can do to get started’ . What about a system that also says ‘no – you don’t need a definitive diagnosis to access this training and these services, and by the way come back again every 3 to 4 months (as opposed to come back in a year or two) until we can clearly rule out or confirm an ASD.’ Yes- that’s sounds better! A year ‘lost’ could mean the difference between a person with autism talking and never talking…if I was a professional working in the diagnostic field I would want to err on the side of action if it was warranted.
  9. Universities in WA are great! I have degrees from two of the four Universities in this State. My read is that universities could really do more in the area of autism. They could be providing comprehensive training and hands on experience in Autism and a broader range of therapies such as ABA, floor-time, speech therapy, sensory integration, functional behaviour plans, programs and IEPs, counselling and family guidance for not only teachers, but speech therapists, OT’s, psychologists, counsellors, and GP’s. These professions could all benefit from more comprehensive and specific tertiary level training and experience. Also providing free/ low cost services for families with children with disability could be a nice community service these Uni’s could provide and thus give the students some more real life experience under supervision. There seems to be more than a few graduates entering work in the disability field who (in my humble opinion) are under-equipped for the job and need more training and better supervision.
  10. Occasionally some therapy service providers hand out set questionnaires to families. It’s just that for the most part they are not asking the right questions and are often worded in such a way as to prop up a service in a system that has serious flaws… the questionnaires (if issued at all) typically avoid asking questions the service provider really just does not want to hear the answers to. It’s not so much about the questionnaires…what I really would love to see is greater avenues available for real advocacy and for grass roots feedback and change in relation to services and funding in the areas of disability and autism.

When I talk about these issues I might seems like a just another mama ‘ranting’…so combat that vibe with imagining it is Nicole Kidman or Hugh Jackman who was saying all these things to you in a sexy voice … and think how great that would be… and then stay tuned for the release of the sequel!

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7 thoughts on “Just because it is, doesn’t mean it should be.

  1. Yes! Yes! We are very thankful for the Assessment team who said ‘Nope let’s get started’ with our son rather than the wait and see approach. He has come so far and my heart breaks when I hear of families struggling because of costs or wait lists or paperwork or the “wait and see approach.” Especially when I see the difference the Dx and services have had not only on our boy but on our whole immediate family of which there are 5. So 5 people instead of sinking into a hole of hopelessness and inexperience feel a bit more equipped to face each day and the world with a child and brother with autism. But it doesn’t seem that everyone can access this same level of help and that is more than disappointing! Great post Karen.

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