The Sequel: just because it is, doesn’t mean it should be.

This is part of two of my previous blog post (see here for Part 1- http://wp.me/p2DdBD-6f ).  Just a quick review …in the disability system in Western Australia I have experienced many instances of ‘just because it is, doesn’t mean it should be.’ This is part two of my list of things I would like to see changed, improved or addressed:

11. Waiting lists. They are no good and yet they seem to be accepted by the ‘powers that be’ as a part of normal life. It’s not like people are waiting for a new part for their car or for a haircut. These are children and families who often have desperate needs. These are children who really need a developmental screening, an assessment, a diagnosis, and to receive treatment and therapy services. For a ‘system’ to make people wait any more than a month for any of these things is again, just no good. Infact maybe government could legislate that once a request for any of these services has been made, the ‘disability/medical/mental health care system’ has a reasonable time frame (I’d say 30 days) in which to provide them. Recruit and train the people, hire the staff, create a placement and behave in a way that upholds Australia as a humane country that has a heart. One mum put it this way: ‘when a child needs to be seen, they need to be seen that week, not in seven months’ time.’ Ain’t that the truth!

12. Dissemination of information. This is one mighty troublesome aspect of the system that actually motivated me to start blogging. I would often be scratching for a pen and paper in car parks and waiting rooms to pass on information to other mothers who had never heard of or been informed about electricity rebates, Health Care Cards, Carers payments, Medicare entitlements, Companion Cards and the list goes on. Every mother I spoke to was grateful for the information I shared with them. The fact that information is not clearly passed on to families highlights the disjointed and fragmented nature of the system, and the reality that often the left hand does not seem to know what the right hand is doing. Not only is information not being shared with families, but at times it seems that what is passed on is incorrect information. One obvious example of information that could be more adequately passed on to families would be the Carers Adjustment Payment available through Centrelink. Never heard of it? Read this blog post from “It’s The Little Things” to learn about it: http://itsthelittlethingss.blogspot.com.au/2013/02/carers-adjustment-payment-my-tips.html?m=1

With time and age limits on certain services, funding and rebates, an adequate system of passing on information becomes even more critical. Once information is disseminated in a more streamlined, systematic and co-ordinated fashion to families then maybe we can move on to the paperwork issue…

13. The paperwork issue! The number of agencies I access to keep all the balls (and acronyms!) in the air at any one time amounts to a job in itself. There is DSC State funding, Federal Funding (FaHCSIA/Better Start), FLI (and other grant based) funding, Respite funding and services (HACC), Child Care (plus Child Australia and Communicare for an aide in the child care), Centrelink (HCC, Carers Allowance, Carers Payment etc), Medicare and Medicare Safety Nets, school , Private Health, private pay therapists and more. I am good at paperwork, but the sheer volume and amount of repetition required by (often exhausted) families of a child with a disability is enough to bury anyone. The system is fragmented, confusing, exhausting and often disempowering. Information, funding and paperwork could surely work (even ‘flow’) along a clearer, more streamlined, and co-ordinated system where agencies can actually ‘talk’ to each other and (with permission) share information. Case in point-my paperwork ‘bucket’!

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14. Individual Profiles: I raised this point in the last post about a lump sum FaHCSIA payment for autism early intervention…let me expand a little. Complex needs require thoughtful and individualised solutions. It’s about allocating funding appropriate to the level needed for best outcomes, not just a set allocation that is given to everyone who gets a certain diagnosis. Many disabilities run along a spectrum (not just autism), and often children have a different starting point. Also some can respond quickly to treatment and others move slower, and many times a child can have multiple conditions and that needs to be factored in. Some children can also respond better to different therapeutic approaches. It’s time for our system and the professionals in it to really take the time to look at the individual profile and needs of the child and plan and review accordingly. I would like to leave behind the rigid and inflexible ‘one size fits all’ approach currently used, in order for funding to thoughtfully reflect the level of intervention, treatment and services needed for best outcomes for that individual child.

15. The consult model of therapy. I am definitely no expert in service delivery models but I think it’s time to have a good hard look at the consult model of therapy used by many allied health professionals in our current system. I think the tough questions need to be asked: Who does the consult model really serve and who does it benefit? From what I have experienced there is often A LOT of driving to and from appointments. These appointments usually last no more than one hour, and there remains at the conclusion of each appointment a heavy work load and expectation on the parent to have to implement the strategies suggested and ‘make it all work’. Not only is it labour intensive, it can continue for years for the child and the parent, plus it’s a financial burden to the family when multiple specialists are needed, and the hourly rate is expensive. I would love to see a more a multidisciplinary model (with in home and/or centre based services) where the therapists can really implement more of the therapy work themselves. Having more adequately funded ‘one stop shops’ in a State that’s as big as this one would be beneficial not only to the children who thrive on routine, consistency and familiarity, and also in alleviating the workload on families. These ‘one stop shops’ could exists in a variety of formats, such as within the childcare system, as therapy centres or within the education system. So this leads to my next suggestion…

16. Education for 3 to 4 year olds. In WA part time Kindy starts for children at four years of age. With many children diagnosed with a disability under the age of four (including children with autism), there is a definitely a gap in the education market to cater for the learning needs of 3 to 4 year olds. I would love to see the school sectors (State, Catholic and Independent), the Disability Sector and the Universities come together on this and take a collaborative approach to providing early intervention school based services for this age group. Professional and quality early intervention is key to achieving best outcomes in the two settings children spend most of their time-home and school. A year in the life of a young child with special needs is a long time and starting an early intervention school based program that bit earlier could make a world of difference to their future.

Someone else thinking along similar lines (but using a child care model) is Stephen Breen who is the WA Primary School Principals’ Association President. He said in The West Australian newspaper on 11 Feb 2013 that he wanted to call on local, State and Federal governments to cut red tape and allow the Education Department to join private providers to develop child care centres on school sites. He was quoted as saying (and I have highlighted my favourite part!) “Primary school sites are the logical place to build a full wraparound centre that not only caters for child care but enables early intervention strategies to be developed at implemented at a local level. The present system is ‘hit and miss’ and lacks a whole of community coordination.”

17. Inclusion. It seems to be the favoured word on the street when it comes to education and the education system. It’s just I often find myself asking ‘what exactly do you mean by inclusion?’ When the child with the disability or learning difficulty is in a mainstream classroom they have to ‘manage’ being around thirty of so other children. I am all for inclusion but I also think it should mean more than ‘plonking’ a child with a disability in a mainstream class, hoping for compliance, and believing we are being wonderfully progressive by doing this.

The child may or may not have aide support, they also may or may not have a teacher or a aide who is educated about their particular needs. Sending out inclusion specialists from Head Office to train the staff can help, but for some children and the staff it may not go far enough. Real inclusion requires a whole school approach, a commitment from staff and other parents, ongoing and regular training and support. It could mean placing speech therapists and other specialised services in schools, it could mean having smaller class numbers in some mainstream classrooms. Inclusion is where reasonable accommodations are made, staff have the skills and ability to facilitate and scaffold meaningful interactions between the child and his/her peers, behavioural strategies are actually implemented, social skills are taught to ALL the children, and where the class as a whole can adapt to have the extra supports in place (visual, environmental, sensory etc).

18. Other schooling options. The flip side of the inclusion debate for schools relates to those families who decide that mainstream is not a suitable environment for their child. They may decide to home school or send their child to an Education Support School (all special needs children). These parents do not deserve to feel penalised or judged for this decision. Professionals must be able to honestly and openly advise parents of ALL the schooling options available to them and not ‘force’ mainstream, particularly if it will cause undue stress on the child and the family. It is a fine line for sure. No one wants to go back to the bad old days where inclusion was not an option, but in some cases mainstream (as it exists today) may just not be set up or resourced in a way that allows the child (or the family) to be happy and successful.

19. A generalist approach. Here’s a list of areas I have found to be relevant to autism and autism intervention: inclusive early intervention centres, day cares and programs, structured play dates, community outings, sensory integration, PECS, behavioural strategies, developmental approaches, feeding, sleeping, toileting, generalisation of skills, data collection, recording of information, goals setting, therapist accreditation, training and supervision. From my experience with autism it’s not about being a specialist in one thing or in one approach. Autism is pervasive (hence PDD) and the system needs to have people trained to be generalists who can work with and help children and families across a wide range of areas. Specialists can know a lot about their therapy approach, but when they put down other approaches that are not the ones they use and are not open to discussing other approaches with parents …that is just not cool.

20. Some Facebook research: this revealed a few more pressing issues for families. They included a desperate lack of therapy services in rural and remote areas, and even outer-lying metro areas. A lack of services during school holidays, the expense involved in getting an autism diagnosis (some families out of pocket thousands of dollars), the almost non-existent support available for children who have special needs but who did not meet the standards needed for an actual diagnosis, and also the high expense incurred by families in buying mobility equipment (wheelchairs, frames, vehicles, etc).

The final word came via FB from Samantha C (with some help from disability advocate Stella Young) who said: “ I want for people (with a disability) to be given what they need in order to be who they are. (I want) for the uber wastage of band aiding issues and overworked Carers to be abolished in favour of actually properly supporting people with a disability and their families. That can’t happen until there is a change in thinking and a shift in the power balance. We don’t need people to do things to us and for us, we need them to do it with us.”

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Artwork by Kiddo!

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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