Last night was the annual Kids Come 1st golf tournament. They've supported our family for the last four years.
This is an unofficial charity which has been growing substantially for over a decade. It began as a way to help one family pay the massive costs of private therapy. Now, a lot of people would have said thank you and counted their blessings. But this family decided to share their good fortune with other Ottawa families struggling with autism.
They decided not to incorporate as an official charity, although that would have given them tax benefits. They wanted to stay flexible and keep the red tape to a minimum. If a family needed help paying the mortgage, they wanted to be able to help with that rather than having to say "that's not an officially sanctioned autism expense." (Trust me, it's a more common issue than you'd think. We get an incontinence grant because neither of the boys are toilet trained. Diapers are approved but not wipes or extra laundry costs. Because apparently we only need diapers.)
Their son has continued to progress but they've recently had to accept that he will likely need long term institutionalization. They began to investigate the options and discovered there is a 12 year waiting list for private group homes. (That's not a typo: twelve years.)
The terrifying unacceptability of that number cannot be fully expressed in words.
They've decided to branch out and will be starting to look at constructing and running group homes for adults with autism. I, quite selfishly, wish them luck. Early intervention is great but there's a real lack of services for adults with autism and families dealing with adults with autism.
I've heard of other families banding together to create unofficial group homes. One family buys a house and serves as the landlord. Then the other families pay rent and everyone takes turns checking up on the occupants (making sure there are groceries, bills are paid, etc.) Some go together and hire a live-in aide to manage day to day work of preparing meals and cleaning.
Placing the financial burden on families throughout their lives is just not okay. The government is supposed to be in the business of providing services which are not hugely profitable but are still necessary. (Like safety, quality health care and garbage pickup.)
I know several families which have already accepted that retirement will simply never be an option. They will always need income to support their children. And that doesn't even begin to go into the terrifying world of what happens when a parent's health fails and there's no one left to privately look after an adult with autism who needs constant support.
I'm glad Kids Come 1st is starting to tackle this area. Maybe we can get lucky and shame the government into helping once a framework is established.