I'd like to talk about a reality for people with disabilities who need aides to go places with them. Like me.
Some of us get some aide hours for free or sliding cost but usually not enough hours to meet anything but our most basic needs - if that. And then we have to hire people out of pocket. An agency around here gets about $26 /hour for an aide. And when I try to hire privately, it's not much less due to the shortage of aides. Which makes me really aware of how many hours I can go out for and be somewhere because I'm hiring someone else the whole time I'm out. The shortage of aides also makes it almost impossible to have backup which means that if an aide fails to show to go some place with me, I have no backup and cannot go.
For me, it's become a barrier to participating in society.
Because of this, I've had to give up volunteer work and social invitations, missed important events and some possible business opportunities. Forget going to all day or weekend conferences. I can't afford the additional cost of bringing an aide with me. And going alone just won't work for many reasons. I can go some places alone because I know when I get there people will help me but quite frankly my hands don't work. And going to cities by myself is a safety issue due to the level of my quadriplegia. Taking notes is an issue. Getting myself beverages is an issue. Cutting up food is an issue. And there are other issues I don't even care to discuss which make it inappropriate to rely on just anyone who happens to be around - but you get the gist.
The truth is that when I go over my allotted aide hours, I need to be making money in order to pay the aide I have to bring along. I hate that fact more than anyone else because it stops me not only from doing volunteer work, but really cuts into my social life big time.
In terms of education let me say that many people who use wheelchairs are able to manage without having an aide along. But for those of us whose disabilities require an aide and cannot afford it, it's a barrier to access that we haven't even begun to address.
5 comments:
I have this problem too. The irony is that if people were more aware of it, sometimes they could provide the help we need to be there. I think it's good you're writing about it. It's a hard subject to talk about .
I'm a caregiver sometimes for my brother who is disabled. Sometimes he calls me and asks me unpaid to go with him to places. I'm so tired from working my job that I say no and feel guilty. But should I? The other side of this is why shouldn't you have to pay? I think that my brother if he has famliy that can do it should ask us and we should also be able to say no. If he can't go that's really not my fault or anyone else's.
Shelly
And the effect goes well beyond the personal loss that you feel.
The committees, social events, and other experiences you miss all lose the contribution that your presence, words, and work would have made. There's a huge loss to our society of not receiving diverse contributions from the variety of humankind. And, sadly, we often don't have any idea of what we are missing out on.
Janet
As my MS gets worse this becomes more of an issue. There are places I go with my husband but there are places I would like to go by myself ( he has no interest or time to go with me to some of these things). Sometimes friends help but they are busy too. I always thought we made a comfortable living but the costs outrun our ability to pay. I get depressed because I've lost touch with social groups. It's good to know that other people understand.
I can mange without an aide but I need help around my house for certain things. I've had a rough time finding help just for things like changing lightbulbs. I can't imagine how I'd manage if I had to depend on people to go places. I agree with Janet that it's everyone's loss.
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