After losing all respite services from the York CCAC almost a year ago (Because they made the insane and completely illogical decision that respite is "for the child" and not for the family - How out of touch can you be?), we've decided to go on a quest to find out what our government or community agencies are willing to do for families of severely and multiply-handicapped children.
I thought I would post a journal here of the quest for services for Liam, to show others what we've done, as well as what works and what (or who) doesn't.
So, here we go:
November 13, 2001: Called The United Way of Toronto; They gave me the numbers of:
Called Circle of Care, and spoke to a lady there, who said that they offer respite services at rates of $8.00 an hour (subsidized) to $15.00 an hour, and all rates in between (I guess the subsidy depends on your income level). Since they deal more with northern Toronto, she suggested I call West Toronto Support Services (416-653-3535), just to see if they offer closer services (She's still looking into whether or not they have workers in our area). I called WTSS but they said they were for senior citizens only.
August 29,2003: It's been such a long time for updates to our quest for respite care, 'cuz this is literally how long it took to see anything :)
In May, of 2003, we moved from the metropolis of Toronto, Ontario to the village of Beachburg, Ontario: To make a long story short, life here is sooooo much better than in a big city! People within the health care and social services actually care about the handicapped! We now have over 13 hours a week - a WEEK in respite! Renfrew County is a _good_ place to be for families - both with and without handicapped family members!
Update: June, 2005: It's been two years now since we've been living in Beachburg and life is still very good to us and our family. Our respite situation has changed so that we receive a total of $5,000 a year for respite, which we may use as we see fit (for respite, that is). We have been blessed in having a respite worker, Jean, who was the grandmother of another Angelman Syndrome child several years ago (Sara, sadly, passed away when she was sixteen years old). Between Jean and her daughter (Sara's mom, Maureen), we have learned more about the realities of living with Angelman Syndrome than you could imagine. These two people (Jean and Maureen) are guaranteed places in heaven.
Update: March, 2009: We're still here in Beachburg with no plans to leave (Though a bigger house and lot would be nice) - Respite has continued uninterrupted and while Jean is still Liam's primary respite worker/second grandma, we've been blessed by finding a second lady, Carol, who also adores Liam and his brother and sister like one of her own.
© 2003-2011 Internalysis / Marc Bissonnette, Beachburg, Ontario. All rights reserved.