Resources I have used
MONEY
We received the Child Disability Allowance, which became the Carer's Allowance. That was from diagnosis to 16. From 16 to 18, there is the Disability Pension (which becomes a full one at 18). No rental assistance for either boy as the rental assistance part of what we get charged for their accomodation isn't enough, though the housekeeping component of their bills are hefty. (sigh) Pity that Centrelink won't assess them on the TOTAL bill for the month.
Will also receives a $66 per fortnight Mobility Allowance for his program, under the Futures Scheme for over 18s in this state.
Now, permanent accomodation isn't cheap......Will's Yooralla bill was nearly $500 per month so it took a huge chunk out of his disability pension and his DHS bill for each month is about $458.
Andrew's DHS bill is subsidised till he reaches 18 - about $60 per month.
There is also a travesty with the Carer Allowance. If you exceed (?) 45 days per year with your child in respite care, they can cut it out completely. And you will find to your horror that there is nothing, if your child needs placement before they turn 16 when they qualify for a pension from Centrelink. It seriously sucks. I went all the way to the Minister, and internally through Centrelink/government tribunals and also with our case being raised in Parliament to try to have this anomaly corrected.
So Andrew, who went into accomodation at a young age, had BIG bills and NO funding.
NAPPIES
You can get help through the Continence Foundation in your state....under 16s don't get much financial assistance here. We toilet trained Will quite easily when he was three.....Andrew was 14 - but that is relative to how intellectually disabled he was too. If you need night nappies, there are brilliant ones that are imported from the UK. I was lucky to get funding for these from the Making A Difference grants. I made great plastic pants (from waterproof showercurtain material that I found in Spotlight using his bought plastic pants as a template) as the commercial ones fell apart. Once you get over a size 2, this is the path you take. There are some auties like Andrew, who take years to toilet train.
RECREATION
In Victorian, we had Interchange with Will spending a weekend per month in a host family's house. Not much demand for auties though as they tend to have behaviour problems. But Interchange also have programs....in different age group ranges. There must be an equivalent in each state as they used federal funding. Will had a great social group, Young Ragers, which did all sorts of activities.....plus he even made solid friends.
AFSA, our family autistic association, funds a carer for members' autie children so they can access holiday programs for school aged children. And Noah's Ark runs disability camps. Yooralla, in Melbourne give funding for recreation and respite. Ring the autism body in your state to see what is available.
Make A Difference program fund all sorts of things too.....needs-based.
RESPITE
We accessed an autistic-specific respite house for a weekend night per month for Andrew - the government one was better (for gastrostomy feeds) and we were able to put both boys in for a weekend per month until they were placed. This was through Human Services, or as it was known, Community Services. Cost about $14 per night.
Every local council around Australia receives HACC funding which funds carers in the home to help families with disabled kids. Because we were a high needs family, we had one carer per child, per weeknight after school (3 hours each child).
Also you can access home help (I had a wonderful lady, who I count as a friend now, who came weekly to do my vacuuming, mopping and bathrooms - when they were living at home. My life was so full-on and I was constantly exhausted.) There are some funding grants that pay for a carer so that you can go out shopping.
SPECIALISTS
Both boys were on the HS or CS books from the age of 2 or 3 and had case managers, which is important if you want to get into the system and access resources. They had big files which grew bigger and that information consolidated their case when they were placed.
From time to time, we needed the involvement of psychologists or the BIST team for behaviour.
I have needed to see our professor here in Melbourne, a fantastic autism specialist, as they needed strategies and also medication. I have been with him from Will's diagnosis at age 3...and see him every month or 6 weeks, sometimes more frequently in crisis. You need to access someone who can help you with behaviour as these kids go through different stages, right through to adulthood....or distinctive phases, like pre-puberty, which is very difficult.
Also, we were very lucky - they went through Irabina, an autism school...then good special schools after 7 years with Irabina. Will was partially integrated till Grade 6.
MEDICATION
Both boys really needed these as they were just so anxious and impossible - they went onto Haloperidol which calmed them down enough so that they could learn. (I learnt that anxiety in autism impedes learning.) They have never been 'bombed' or chemically restrained either. Also, the more anxious they were, the worse the behaviour. Their medications were stable for a few years but everything changed with pre-puberty - especially with the eldest. And even now, we have changes still. Andrew has responded well to Risperdal and is less anxious and more manageable. But for Will, Risperdal didn't work. One side effect with it is that auties on it have huge weight gains because it causes binge eating. Will already was prone to this but Andrew is tube-fed and so it didn't pose a problem. And guess what!!! Andrew is now eating some food! The dieticians have now reduced his Resource Plus feeds from 10 per day to 6.5 a day! He'll always need his PEG, but eating some food has meant that he is getting some fresh vitamins, etc....and it has built up his immunity. He hasn't been half as sick as usual.
SCHOOLS
Here in Victoria we have several fantastic autistic-only schools. The special schools are divided into two streams.....Special Schools are for IQs of 70 and down to 50 (I think!) Special Developmental Schools (SDSs) are for a lower range than the Special Schools, and really good for consolidating basic living skills and community access. My boys have been in both systems and I couldn't praise them highly enough! The teachers are incredible...the programs are brilliant. Some special schools have dropped the word special....like Heatherwood where Will's last years were at. Talk about an incredible program - they PUSH these kids to achieve their maximum potential and independence. Heatherwood has a great reputation for this. And his previous special school, Ashwood, was great too. Will was also able to access a TAFE course (Swinburne University) with an IT course modified for people with an intellectual disability, through Heatherwood.
DISABLED PERMITS
I was on the state body for the Disabled Persons Parking Scheme as a result of lobbying Vicroads....they tried to exclude intellectually disabled people from the scheme and I was going to invoke the Anti Discrimination Act. I managed to get the scheme changed, which was great. Now, in my state, and I'm sure others.....if you have an intellectually disabled person who is a danger to themselves and others in traffic and you need a disabled parking permit, you can get one - but the form here has to be filled in by a psychologist or psychiatrist....not a GP.
From time to time, you may get challenged by ignorant members of the public because I'm sure that your son, like ours, is deceptively normal looking. Just stand your ground. If your son runs into traffic like mine did repeatedly....then you should be quite justified in getting one. I also needed one with the wheelchair as I was also pushing a pram with Holly! One day, I went to a sale and bought a new ironing board, somehow got it to the disabled spot pushing the wheelchair, Holly's pusher and the new ironing board....simultaneously!
AIDS
Now, there are quite a few programs, run through hospitals (PADP), especially childrens' ones, that have wheelchairs (Andrew's was a really trendy electric-blue colour Remploy Stowaway that snap-folded like a pusher - see underneath) or Maclarens FREE OF CHARGE....the Royal Children's Hospital here runs a Wheelchair Clinic. If you have a real problem getting from A to B with escapes or 'dead drop' tantrums, these are fantastic and orthotists will create brilliant restraint systems. Andrew, about seven years ago, was one of six auties in wheelchairs from the RCH. You get used to seeing auties occasionally in Maclarens or Convey Cruisers, when they've outgrown pushers.
© Debs 2003