breaking the stigma around asistive living for younger people with disabilities

I know I’ve blogged about this a time or two because it’s a subject I’m very passionate about.

Asistive living, a setup where seniors can have their basic needs need, have the security of staff that get their issues, but the flexibility to thrive in their own lives, is such a common place concept. There are assistive living places everywhere you go and everyone competing to be the best and have people move there. No one tells someone of that age or with issues common to the elderly that they “should” be remaining in their homes if that’s not what they or their family feel is best. There isn’t some kind of yardstick at least I don’t know of one, that dictates that one needs to be at a certain functioning level to qualify (in society’s eyes) for this kind of care. In fact assistive living programs for the elderly are so varied that they have living situations for all kinds of levels of need.

And seniors have choices as far as I’ve read and know about. There’s been a trend lately talking about seniors remaining in their homes and agencies that help with this. This, and the factor of family/ friend support, and what’s available for residential support gives a gamit of options.

So why is it so vastly different for people under sixty five with a significant disability or illness?

First of all I feel like there’s this whole concept of, trying to put it into the best words, like there’s a judgment that someone above a certain “level of functioning” doesn’t “need” this type of care. At all.Most of the group homes and shared living options) are for those with developmental disabilities. You know Down’s syndrome, autism that kind of thing. I think that’s great. I’m confused about the high proportion of these services compared to so little for other disabilities. I don’t think it should be a competition where it’s assumed that a certain disability/ group of disabilities “needs” such a service more than other groups. It doesn’t take into account individual needs, or even give the chance for those with any long term issue to have the choice of something like this. Where those with developmental disabilities, as with seniors have that gamit of options where they can use the services or not.

This level of functioning thing really gets to me here’s why. First of all most people who talk about it, who have told me I’m “too high functioning” to be living in an “institution” and “it’s such a shame” aren’t professionals. They’re people who don’t really no the situation at all. Or even friends dealing with similar issues, but who choose and are quite firm about the fact that they would never choose such an option. I try not to get into a debate with them about which option is best because there are obvious pros and cons to both and I think it depends on what you’re willing to trade off. Someone who lives where I live can’t cook their own food. In fact doesn’t have any kind of choice about what’s on the menu. For someone who lives to cook this is torture! People who live independently even with support coming in, firstly the person might not even show up, secondly it’s more up to the individual to be sure daily things get taken care of and to adapt to if they don’t then they don’t. Things like cleaning food shopping money management, if the person due to their illness/ disability values living alone so much, they might have to be ok with things not getting done consistently or at all at some point. Not that they’re like oh it’s ok my house isn’t clean I’m fine with running out of food etc. But if someone asked them would you rather be doing this or living in residential where you’d be garunteed food/ clean living space ETC, they’d say no I’d rather live alone. Just like if someone said to me well you can choose your food everyday, not have staff or peers you don’t like hanging around ETC, but you’d have to manage everything on your own I’d say no.

See what I’m saying? It’s about trading and compromising and choice.

But I think people are really afraid of what they don’t know and have steriotypes about things that are hard to shake off. Like in spite of it being 2015 when someone hears about someone living in any kind of residential setting, a group home, nursing home, asistive living they call it “an institution.” When I can say at least from where I live they never would call themselves that. They never would want the residents to feel that way. They too are all about choices. For people that move here and need six months to a year to stabilize and move out that’s fine. Outside agencies have this moving on program where it seems every few months someone is knocking on our door asking if we want to move out and they support this. They want us envolved outside the building doing things. They work really hard to make things fun and safe for us here. And here at Albany specifically I think they do a really good job.

So when someone calls this an institution it really hurts my feelings. And it shows they’re really missing the boat when it comes to the purpose of such places which is not to lock people up or put them down, but to give them that option of having certain daily needs taken care of, having support staff around ETC if they need it.

I found this stereotype to be true not just about here for mental illness, but also when I lived at Friedman Place for the blind. I got quite chewed out by a I guess well meaning group of blind people for daring to advertise a “custodial institution” to them and saying I loved living there. Go figure.

So there isn’t that variety of options at all for someone who doesn’t fit the mold. It’s like well ok you’re articulate and intelligent and competent what’s your problem? Why in the world would you want t this thing and you obviously don’t need it.

That’s what I get from the majority of people I talk to, until they really get to know my story. And I’ve got it from some that I’ve told my story too.

The message from the professionals/ general services provided is the same thing but implied as the services just aren’t there. Even for people with mental illness now there’s this huge turn around to avoid “institualization” so they’re closing down anything residential related and putting everything toward”community living.” Meaning you live in your own apartment and a caseworker comes by once a week to see how you’re doing. You’r encouraged to see your psychiatrist therapy ETC and that’s kind of it. As far as I know. And as far as I know the services provided are less than ideal for all the money they put into it. I think it’s because the population of those with mental illness is so huge that no matter how many agencies they have, and they try for big agencies, the overflow and staff turn over is too much.

I’ve seen it work out with it’s pros and cons. Again it’s about trade offs. But even in the best situation I’ve heard of I see huge gaps in the support someone who’s struggling just to get by is getting. But then I try not to judge because I ask the same of others.

The group homes that are open have a clear purpose of “stabilization” giving life skills and people moving out as soon as possible within a year or two. Why? I mean I know why and I think a huge number of people want that and wouldn’t give it a second thought. But why is it like the norm to say you have to be “on your own” really with as little assistance as possible. That’s just not workable for many people. It’s a personal preference but also like concretely it doesn’t work. If someone when left to their own devices basically is so depressed they sit at home for years not doing much of anything, not being able to manage money get proper nutrition meds ETC. But then they move to Albany and get all that stuff. They get staff believing in them peers behind them and it might take a couple years but they slowly but surely get a life for themselves and they want to continue there and feel they need this personal formula that works for them why deny that? It’s just like saying everyone with mental illness has to go live at a residential place or go to the state hospital. I think that in their horror at the abuse that went on back then, advocates lawmakers ETC swung way in the extreme of the other direction.

I know there’s a middle ground. For people like myself and a friend of mine, and so many others, if all you’re offered is different variations of basically having to somehow make it on your own, and you know you need more then you don’t have a choice. One day I’d like to move from IL to the new England area. But there are literally no places like Albany cfare or friedman place or anything at all back there. What they have as I said is meant to be temporary. Or for those with developmental disabilities. Again it leaves us with few choices. Well one choice is to go down the road that is sort of prescribed/ offered/ expected and try to fit the mold. But she and I have done that for too many years. It plain doesn’t work for us. So for now we’re here. We’re not by any means stuck here. We could go plop at my parent’s house and they’d take us. But that’s not a choice we’d be willing to make either.

I am for choice. I think people who provide funding, advocates ETC need to think more about the concept of assistive living for those under sixty five. It might include those who are blind/ deaf, paralyzed have CP, and those with chronic illness. As well as those with mental illness. People who their life isn’t working in any other situation but with the right mix of support and flexibility, of the security of caring staff and support of peers day to day could really thrive. Community is the social atmosphere that surrounds a person. I don’t understand why living in a building with people going through what you’re going through and staff providing basic needs so you can heal be stable and pursu your passions safely is any different than living “out there.”

I was looking this weekend at a place in vermont. That at first glance seemed like it might take younger than sixty five but now I’m not sure. I wrote them. But their tag line on the site was “on our own together.” And I think that’s what it’s really about. And I think if we can see it through the lense of choice and people’s needs through their own awareness, and not some one size fits all approach we can provide a variety of options that will serve people in a more individual way.

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2 thoughts on “breaking the stigma around asistive living for younger people with disabilities

    • I totally agree. It’s really sad actually that there’s so little out there. With a lot of people who are trying to live on their own with services there’s so much hospitalization and things and I just see the services even for that lacking. I guess there’s just not enough money so people try to come up with some kind of solution but it’s just a band aid.

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