Friday, October 12, 2012

An aging parent's plea for support

11:05 AM 7 comments

7 comments:

Have any hard hitting changes resulted from this yet?

It's a big problem here in the US as well. The fact of the matter is that very few people want to care for those that need a lot of support unless they are paid well for it, which they are not in our system. Not enough people want to pay for the kind of support that is considered humane and adequate.

That is a reason many people do not want a disabled child. The care is very expensive, hard to come by, and often to difficult to do by one's self even if you are willing to give your personal time to do so. We see it with the elderly as well. It's easier to place them in an institution as long as it doesn't cost the family too much to do so.

I am hopeful that the internet and more positive information has led to families keeping their own at home and joining those like this mother in insisting on more focus on this situation. How much of a change has occurred in this area, I don't know. Do you? Are more families "keeping" their children, siblings, parents who have not been able to become independent rather than "putting them away"?

I disagree with commenter #1's dichotomy of "keep" vs "putting away" family members who need a great deal of care. Often, placing in a facility means improved customized care for the person (whether it's a senior with Alzheimer's or a developmentally disabled young adult). And in most of the cases, the family must monitor their care, visit them, include them in their lives a whole lot. This is far from the 'warehouse and forget' pattern implied by the comment. A place where a loved one is safe, has enjoyable activities, and other family members can earn, look after other members, and do whatever else they need to do without worry is not "putting away". It is appropriate care.

Interesting article in The Toronto Star yesterday about the Ontario funding and aging parents:

http://www.thestar.com/living/article/1269213--disability-support-families-fear-ontario-s-funding-changes-leave-them-unable-to-cope

When young developmentally disabled adults go to live in nursing homes because they do not have the funds to remain living at home with their parents, supported living, etc., then there is injustice. Too many disabled adults are ending up in facilities only because the family has lost provincial funding, has been cut back, told to wait to be re-assessed, or have been put on a wait list. They are placed in an enviable position to accept whatever there is, for better or worst. It is abhorrent. It should be wrong. The same happens in our public school system. The automatic default is supposed to be a regular class placement yet many families feel compelled to accept a special education placement because they have been told their child will receive no services or supports in a regular class. These systems feed on the fear of families. Families feel backed into a corner. It is wrong ethically, morally and legally.

This parent in the video should not have to plea for support. It brings tears to my eyes. It should bring tears to anyone who watches it. Maybe Louise could send it to the Premier and the Ministers involved if enough readers express outrage.

And this story:

http://www.thestar.com/news/canada/politics/article/1270716--disabled-daughter-21-surrendered-by-family-likely-bound-for-nursing-home

I meant unenviable. Sorry for the typo.

It's a problem nearly everyone will face eventually so it's so foolish that an infrastructure to deal with these situations well is not being developed. My neighbor's parent died a few months ago and the other parent cannot care for their adult son who has DS alone, and the care resources have not worked out. The siblings are not willing to take him into their lives full time, so he will be placed somewhere after more than 40 years of living with parents. From what I've been told, the choices are not so great as the there are waitlists for the better options and the placement is to occur soon.

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