Submission
No 18
INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM
DISORDER
Name: Name withheld
Date Received: 19 February 2016
Name
withheld
Submission S018 Received 19/02/2016
Family and Community Development Committee
Submission to the NDIS enquiry 16th February 2016
Dear Sir/Madam,
As parents of a young adult with an Autism Spectrum Disorder diagnosis, we wish to submit our various experiences, our examples of obstacles and where we see possible improvements. Having said that, it is possible that after years of constant battles, we no longer see where the process could be improved and just take it as another challenge to face. So, if an obvious improvement jumps at you when reading our challenges, we hope that will make this submission worth its while.
Brief history: Our son, was diagnosed at 2.5 years-old, in 1992-93, at the Austin Hospital in Melbourne. The diagnosis was very matter of fact and the delivery appalling. After telling us that our son will be disabled and the way he is for the rest of his life with no hope of a cure, we were left to go home in tears. Hopefully things have improved since then.
Primary school: attended the local primary school with an aide. He was not made welcome until the aide was organised. That is appalling in itself but a reality in State ( and private schools) never the less. The application for funding was done by us after weeks of research and deciphering of information. We are well-educated parents, able to ring, argue and make a point repeatedly, if required. In a migrant situation, with less fluency, the process would have been almost impossible. Again, this occurred a while ago and things may have improved since then.
Possible improvements: when a diagnosis is made, this should trigger a chain of events and offers for help so parents are not left to their own devises to re-invent the wheel every time. This could include referrals to health professionals (including occupational therapists, speech pathologists) , Centrelink assistance (carers/disability) school funding, etc.
Secondary school: It became obvious that funding for main stream secondary school was not going to be sufficient to meet needs. We opted for a special school in Ashwood which turned out to be terrific for him. became eligible for Disability Pension at 16. The school alerted us to it and we organised it. The school helped us in the last year of his studies to consider what was on offer for him after school finfishes (“sheltered workshop”, further education, etc). That was helpful even if depressing because it was so limited.
Possible improvements: -More funding for integration in main stream schools for those who would benefit from the main stream system. -Clearer advice on Centrelink eligibility, which should be triggered by Centrelink itself not the school.
Tertiary education: falls in between services. He is not severely disabled (mentally or physically) but he is not able to write and reads at a much lower level. He is physically able, strong and understands
instructions but is slow processing the information and reluctant to talk. This makes it difficult to know if he has understood the instructions. There is very limited emotional response from him.
The courses available for him were very limited: -Centre placement: when a series of activities are offered to occupy and entertain them (eg.Alkira ) These were not suitable to us as they had a feeling a “holiday program” and did not offer a long term improvement option for him. We felt he functioned at a higher level and this would hold him back not push him to improve. -Workshops: where packing and/or catering activities are offered (eg Waverly Industries). Again, we felt he functioned at a higher level and this would hold him back not push him to improve. He did not feel comfortable in this environment and found it boring. -TAFE: with courses such as transition education, Work Education and Horticulture Cert I and II. managed to do all 4 courses over a number of years, because he was able to do it at his own pace, thanks to the Unit format of these courses.
The funding for such courses was a mine field (Future for Young Adults etc…) with some being only available for 3 years (on until they turned 21).It felt overly complex and disjointed.
The number of places in these courses are very limited and funding to the TAFE system got cut back severely so it became a real issue when he reached the level of Cert I & ii in horticulture. Some courses were no longer available and we had to go to Wantirna to do it (1 hour away by public transport), over a number of years because of some classes being cancelled due to lack of funding and students and because was only able to cope with a small number of units at a time. Having said that, was offered a scribe for all courses (as he unable to take notes or write) which was a fantastic service. A lady from a personnel agency was appointed for him and attended all classes with him, took notes and filled in questionnaires and exam papers for him. She was organised by the TAFE college/ student services. It was the first time we did not have to organise it all and it came offered without having to research our rights! Most impressive service. It would have been impossible for him to complete the course otherwise.
What he gained from these courses was some manual skills (horticulture) , some independence (public transport, organising his lunch and equipment), social interaction. It kept him busy for a few years, gave him exercise and brain stimulation.
Possible improvements: For children who are not academically able and are best suited to manual and visual learning, more courses should be available with on-going secure funding. -Attach the funding to the child throughout his potential academic period so parents do not have to keep investigating, applying for funding and working the “maze” of rules and criteria every 2-3 years of their child’s life. Life is complex enough as a parent of child of autism without having to constant search, apply etc…Presently there appears to be a number of funding “buckets” which one has to find and apply for. It is most inefficient and difficult for parents. -For those who need it and are slower at developing , make their academic periods longer than average to reflect their slower maturing process.
Work force: had now reached the end of his education options. Once we had exhausted what the education system had to offer, we looked at work options. Our philosophy is that, if is able to work, he should for the following reasons: -Be less of a burden on Centrelink (as his Allowance gets reduced pro-rata of his income) -Be more productive
-Be more like everyone else by earning his keep and going to work. -Give him a sense of self-worth -Keep him active and social in the community (which will be easier for him to survive when we are gone and no longer able to look after his needs) -All of the above contributing to a better mental and physical health
The following options were open to him: -Supported employment: the closest available was in Lilydale (nursery, more than 1.5 hr each way on public transport) with a pay packet of $8 a day. This was totally unacceptable for a number of reasons: It felt like exploitation, it costed twice as much for public transport, it did not give him any sense of self-worth. -Employment agencies: we discovered, by chance, agencies such as Wise Employment and East works who are specialist agencies to assist disabled people to find employment. They did not find employment for him. We did, through contacts, find him a placement at the local Council’s parks’ and Gardens department as a gardener for one day a week (8 hours). He was assessed by Centrelink as capable of doing more work and we also felt he should work every day if he could.
The problems we encountered were: -The agency were never able to find him more (we tried several agencies, thinking they were not trying hard enough) -We then understood that once a person has been allocated an 8hour position, there is no incentive on the agency to find more as they do not get paid/subsidised by the government to do so. -We later found another position for him at Coles in the Fresh Produce department. This was only made possible through an agency, as Coles wanted the subsidy that went with it. He had 3 successful years there with between 4-20 hours a week casual shifts, until a new manager came in and cancelled casual shifts.
- has since suffered from an unknown/undiagnosed mental or physical illness. We are not sure what triggered it (bullying at work, loss of work?). We have spent the last 2 years going to a number of medical practitioners, specialists, all unable to give a diagnosis. is now unable to work and we will continue to investigate ways to get him better at our own costs. -We have found a disability organisation, (disability Works) in change of all disabled workers for Coles, but their help comes too late for us as in no longer in a position to work. -Working has the negative effect of risking the loss of the Disability Support Pension. Many parents prefer to stop their children from working as they fear the loss of the pension. It is also thought that once it is lost, it will not be reinstated. That’s’ because, from afar and on paper, it looks like one is able to work and therefore not disabled any more. This is not the case at all. What is important to recognise (and is supported by our experience) is that the jobs we have secured for our son are heavily reliant on the good will of the manager at the time. This has been true for us for both the Council and Coles’s positions that held. Once these people moved onto other employments, new managers had different philosophies and lost his jobs. We agree with the loss of Disability pension /assistance whilst he is working but we cannot afford to be in a position where his pension cannot be reinstated. This fear gets worst as we age and ponder about his future without us. It is constant juggle to keep his hours below the threshold. -We hear about possible avenues for assistance through discussions with parents with similar problems. It is very much a “hit and miss” process. -We were advised during such discussions to apply for a case worker with DHS to advocate and offer services where and when required. Despite several phone calls, it appears DHS is unwilling to give a case worker to (it is now been 2 years and no reply- so we take that as a negative reply). We were also advised they do not help with advocacy, accommodation and health issues. Their assistance was limited to receiving a booklet on all available services for respite, recreational and
assisted /centre placement. This was no different to that received from the school some years earlier.
-Normal employment: this relies entirely on the good heart of the owner who may have a sense of social justice. The position available are usually heavily demanded by high school students looking for part-time positions. We have not been able to find something eventhough we constantly keep an eye out for them and have done so for several years.
Possible improvements: (where does one start!) -Encourage disabled people to work as much as possible (to lessen the burden on Centrelink, to improve their chance for better mental and physical health). -Supply the agencies with the funding to do so -Alternatively provide the funding /assistance directly to the person (and cut out the middle man when possible) -Provide easy financial support for companies who wish to employ disabled people. -Enable the Disability Pension to be more flexible so it can be easily reinstated when due -Extend the coverage of services to “Health services” so that mental illness (which is prevalent in young adults with autism) can be tackled and is seen as part of the challenges they face.
General life’s quandary: -Health: Through our 2 years’ journey to restore health, we have come across a number of persons who have indicated that Autism affected people often suffer mental illness , in particular depression when coming to the realisation that life will be different, generally we they hit their 20’s. We have felt so helpless and alone in these last 2 years, unable to get the help we need. We have spent a large amount of money knocking at multiple doors, some useless, some leading to others… Possible Improvements: advise families of specialists in this area, assist with the cost of attending such services. Keep them working and active so this does not happen in the first place.
-Accommodation: We are in our 50’s are reasonably healthy but what will happen to if something was to happen earlier than expected and when we get older. This is a very common worry for parents of children with disabilities. How will care for our children, advocate for them and give the care we feel they need and are entitled to?
There are a number of people out there who have funded, built and organised the long-term accommodation and supervision of their children in purpose–built housing due to the shortage of available government accommodation. It is costly, time consuming and exhausting. Some will manage, many won’t. Possible improvements:- make accommodation provision for all levels of disabilities, available to those who need it. -Provide more funding for supported or “cluster” housing or any other form of housing which meet the needs of Autistic adults.
Research: A number of medical practitioner we encountered now consider Autism Spectrum to be a symptom not a diagnosis and believe that the brain wiring (which is definitively different in Autism Spectrum) can be improved. Some research exists (and we have put our son on some clinical trial list) but more needs to be done. Autism diagnosis has surged over the last few decades. This alone demands research as the burden it will impose on the health system in decades to come cannot be ignored. Possible improvements: Invest in research to better understand the brain function and how it can altered, chemically and/or physically.
NDS Scheme
-We do not understand yet how we can access the services and what it has to offer in the short and long-term. Possible Improvements: -Provide families with information in a personalised manner, such as interview with case worker to guide them through the system and what it has to offer. At the very least provide clear instructions to parents as to eligibility and process. It is currently too unwieldy and complex. -Remove jargon from material (capacity building, framework) and use lay-man terminology.
End of submission