I have an amazing husband. I want you all to know that.
Sometimes, the spirit reaches me and I become a little, well, spirited in the same vein as my boys and I make impulsive decisions. Usually the action itself is impulsive but there is almost always a lot of thought and, at times, agonizing that leads up to it.
A few weeks ago a friend and mentor made mention of a very important gathering of people who have been working so hard for so many years for people with disabilities to live independent, unencumbered and meaningful lives. This group has done a great deal of advocacy and many of them are parents who have been doing this since their own children were quite young. I and many other parents have this group to thank for many many things.
But after my friend mentioned it I admit I let it slip from my mind. Caught up in every day tasks like laundry and school advocacy (side note: C started staying at school for recess this week! yay). Then it hit me – these people are not always going to be around. There have been some, in my opinion, horrific changes to adult developmental services this year with the creation of DSO’s and making families get Psychological assessments for their adult children to prove beyond a doubt that their child indeed has a developmental disability (why anyone would ever try to fake a disability for the paltry well below poverty rate they pay out is beyond me but whatever). Anyhooooooo
Back to today. I raced around and made arrangements, pre-made lunches and lined up support so that I can go with some fabulous women to this meeting being held all day tomorrow where I will be surrounded by like minded people who have devoted large chunks of their lives to creating equality. We will be making action plans for “what next” as far as advocacy and independent facilitation. This won’t be easy on my kids or husband that I am leaving and so suddenly but it is beyond important. The government is just not going to be there the way our kids need them and families need to band together to rally for the formal supports our kids need and get creative about how to make it all come together.
To learn more about self determination, independent facilitation and individualized funding go visit their site: Individualized Funding Coalition of Ontario. The main pages haven’t been updated for a while (everyone is a volunteer and they have been quite busy) but you will be able to get the essence of what they do. Consider joining – it’s important for young families to get involved and to realize that when our children turn 21 there are very scarce resources with very strict criteria to get any small amount of service or supports.