Wait List after Wait List after Wait list

OK, with diagnosis “confirmed”, now what? There must be services out there to help him? There has to be something out there to help impacted families?

The provincial government had closed or was in the process of closing all institutions and whatever services they could manage politically for the intellectually handicapped, sending existing residents back to their families and downloading service provision to their communities. The buzz word was “integration”. It was good marketing. The province provided some funding to assist families to integrate their child in the home. Great, so I went on the wait list. It only took about 6 months for our funding to come through and when it did, I felt like somebody kicked me in the head. It was a paltry $2,400 per annum, which I had to fight for every year, completing with all other families for a too small pool of funds. The application itself was a daunting lengthy form that took hours to complete and had to be submitted on or before the deadline, no exceptions.

Ugh!

I knew early intervention was important, and that the prospects of publicly funded early intervention for N were grim. I investigated what services were available publicly AND privately in our community for social skills development and early intervention. Publicly offered programming was scarce, and tended to be oriented toward higher functioning kids. I found a 6 week publicly funded social skills program for very young children with developmental delays, twice per week for 3hours. Great, so we went on the wait list. The other option – a daycare centre would take him to develop social skills, if he had a “resource consultant” who would support the him in a daycare setting with behavior management strategies. The resource consultant was provided by the municipal region. Great, so we went on the wait list.

It was not a long time before we got selected for the preschool social skills program. Sadly we could not get a repeat, as I was told there were others more needy than N. Hmm…..or were we too challenging?. Next attempt – the daycare option. We got a resource consultant in about 6 months, N was 3.5 years old. We put him in the YMCA daycare half days, where he wreaked havoc for almost a year. It was a story a day. The resource consultant was helpful but had too many kids in her case load. When we left for JK I knew they were relieved. At some point during the JK year I thought about returning to work. When I approached the daycare centre about having N in the afternoon, the director lied to my face: “I am sorry, we don’t have any spots available.” I knew another family there, I knew.

There was publicly funded IBI – however we had to go on the, you guessed it, WAIT LIST.

UGH!

We turned to private therapy and IBI. The cost for private IBI ranged from 37K per annum to 65K per annum! After tax dollars. The main reason for the high price tag is that IBI is conducted one-on-one. There also were only a few options available at the time. We decided to try a private school in Ancaster that was at the lower end of the price range to give him the best early intervention that we could not afford. Have house, can mortgage.

N finally got public funding when he was 7. It took 3 years. It lasted 2 years, but that is another post.

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About lifewithautistickid

I am a Chartered Professional Accountant (CPA), with an MBA and BA. I have been fortunate to have had an extraordinary life with an autistic kid. I have learned so much from him about people and life in general. I want to make a difference by sharing my extraordinary experiences. Raising a son with severe autism and developmental disability has made me realize how we who are "normal" do not understand "disability". Instead of trying to "fix" people like my son by burying them in the community, I would like to see a society that respects and honors them for who they are. The potential is endless, in a world that can celebrate with sincerity, the dignity of the individual. Love and blessings to people of all "disability" . That includes you and me!
This entry was posted in Autism Challenges, Coping, sort of, OMG, Totally not coping and tagged , , , , , , , , , . Bookmark the permalink.

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