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Alisa18047 karma

In my state (WA), at minimum, there's maybe one assisted living facility for disabled who aren't seniors or have 'severe' developmental disorders. Its where I currently live, and despite having autism, I didn't qualify for other facilities because I'm literally too smart. The only other place we could go is possibly a group home, which wouldn't afford the same dignity.

IMO, us 'low care' mentally disabled who aren't seniors are an under-served, under-acknowledged demographic. We can't live on our own, or hold a job, but are too, ahem, 'high-functioning' and young to qualify for anywhere else. I suspect many like us are homeless in the streets, even.

Can I get your opinion on this?

Alisa18015 karma

I'm a bit more 'high-functioning' then your sister, to the point I handle all my own paperwork and affairs, including financial. I received little support from my own parents, and drove them nuts with how I struggled to do simple chores until I moved out.

WA state bureaucracy is manageable for me, but I stress, no bragging, I'm extremely intelligent, which gives me a huge leg up in comprehending and navigating these things.

My support comes from a variety of programs. If your sister's disability payment is low enough, she might qualify for a Community First Choice program. That's the program I'm under to afford my place, and another Medicaid program that covers all my Medicare subsidies.

All I pay really is a predetermined rent each month, with a given amount left over for... Whatever. If your sister was disabled before she was 26, another important thing to look into is the ABLE program. Long story short, an ABLE account will allow her to have assets without losing benefits.

Please hang in there! I know its hard, but I promise, its just as hard on your sister! Above all else, be gentle with her. We often are painfully aware of how incapable we are, and criticism (as opposed to acknowledgment) is not helpful.

Alisa1807 karma

Its extremely dissappointing, but not unexpected.

The kicker is, more facilities like ours would nor only be helpful for people like us, it would be great for caregivers as well. Because we're low-maintenance, the caregivers have plenty of time to sit and breathe in between med passes. Its pretty common to see them gossiping or watching videos in the med/break room, and I don't mean that as a criticism.

The call light goes off once in a blue moon. Some of us have tempers, even volcanic ones, but never violence. Death is so rare, its a devastating event when it does happen. The place is very lively, with coming and goings of visitors, friends and family, and residents alike.

Our staff turnover, unsurprisingly, is quite low. More places like ours would be fantastic for caregivers who burn out elsewhere. Its a win-win.

Alisa1801 karma

TY for the book recommendation, but honestly, I mentioned my autism because 1) Its immediately recognizable, and 2) Its technically what I was approved for disability... But in actuality it was very severe Generalized Anxiety Disorder. And that was before I was officially diagnosed with the gigantic pain in the butt called Idiopathic Hypersomnia (look it up 'cause its a long story).

In short, autism ranks so low on my list of problems that its almost not one, though I still have my moments. People have difficulty believing I'm autistic until they observe my habits... Or see my chain of logic break on occasion, which either leaves me confused or frustrated.

Overall I'm very comfortable with myself, and in one of the best possible positions. But I'm also aware that I'm one of the lucky ones, and even then, I've been through hell to get to this point. My smarts and resourcefulness, combined with resilience, were my saving graces, but not many who are mentally disabled are that capable, nor should they be expected to be.

Alisa1801 karma

It is very nice. Though I need to stress the IH diagnosis came after my SSDI approval... Which tells you how bad the anxiety was/is. _;; I'm fine with 'bigger picture' things like finances, paperwork, appointments, etc. but when it comes to cooking, shopping for food, cleaning, etc... Yeah...

Our meds are managed, but we can request them to go whenever we go out, and people go out all the time. Mealtimes are only an hour and probably not at the ideal hours, but there are ways around that. We have a 7-11 up the block, and a Safeway across the street for snack runs.

Our rooms are quite large, more akin to studio apartments. Many of us are gamers because we have trouble getting out, and we need something to pass the time (and its a good coping mechanism). Housekeeping does each room once a week, and handles laundry, though there is a resident laundry for those who prefer to do it themselves.

If you aren't on disability yet, apply and GET A LAWYER. They work for free upfront, and only get paid if you win, and only a small fraction of your backpay.

Of course, that assumes you can find a place that can take you... Hence the problem. But I think someone like you would be able to figure it out.