You may be scanning posts on my blog and wondering what the information about community living for those with disabilities is about.
Basically there are people with disabilities who are being housed in institutions, such as nursing homes, against their will. Disability rights advocates, including groups like ADAPT, are working hard to change this situation with new laws and advocacy efforts.
The US Catholic Bishops have agreed to support new legislation entitled MiCASSA, the Medicaid Community Attendant Services and Supports Act, recently renamed the "Community Choice Act". This bill would let Medicaid recipients use their long-term care funds to live at home and avoid institutional treatment.
Our Church has always supported the sacred worth of every human being. If you scroll down you will see more posts about testimony given by disabled people who have been institutionalized .
This article "No Nursing Homes on Wheels" from 2002 explains the history and background- click above to read.
4 comments:
I was in a nursing home for three months a couple of years ago, and that was enough for my whole life. I didn't have a choice, I had had surgery on my tush and needed a dressing change with every bowel movement, and my insurance wouldn't pay for 24-hour nurse to wait around my house for when I'd go to the bathroom.
I was at one of the "better" homes in the city --- there was actual physical therapy, it didn't reek, etc --- but it was still a miserable total control institution. No privacy at all, not even in my room with a roommate who wasn't at all pleased I was there. Sometimes I'd put the calllight on to have my dressings removed to toilet and wait 30 minutes to an hour; and then wait another half-hour or more on the toilet waiting for the nurse to bandage me back up again. It took three weeks of campaigning to get the daily shower the wound care doctor had ordered, over a week to make the dietary understand that I was supposed to eat fresh fruit and vegetables. Everything I did was documented, they even took attendance at Mass and at rosary service. And they hovered every afternoon I decided to elevate my swollen feet and read in my room, as though I was depressed preferring Dostoyevski to another pokeno game or tambourine-banging music session. I got out and back home at the first medically possible moment, thankful I could. There were other people there who were lifers; they could have lived very well in an apartment or an assisted living, but couldn't get out since title 19 doesn't pay for assisted living and garnished their social security and pension so they could never get together first and last month rent and security deposit for an apartment.
One of my biggest fears is that I'll eventually end up a lifer in an institution, since I'm single and not independently wealthy.
Thank you for leaving your comment, Karen Marie. My heart goes out to you for having to go through that. I have a number of friends who had to go into nursing homes over the years. Some, like you, were able to get out and continued their lives in the community but others either never get out or, if they did, were forever changed either physically, mentally or both. Sadly, as you point out, it is a financial issue as well as dependent on if others are willing to care for you and in today's society it's hard enough to get someone to come over to do a few dishes and change a lightbulb - much less get care for personal needs. And how is one to afford paying for such care? RIght now my aide is traveilng and I could not get backup -even for a few days. So we need to fight for the right legislation to fill the gaps - or else face futures in institutions. When I speak and mention that is(was) a possibility for me, people look as if they don't believe me -but we are all a step away from that.
Yep. Right now my biggest problem is laundry. I used to have a tenant in my spare room who took mine to the laundromat when she took hers, but around Memorial Day she found a new boyfriend and greener pastures in another city..... so I've got two months of dirty laundry piled up waiting for one of my other friends to get some free time to help out. It's the little things that snag me!
Karen - Two months of laundry isn't a little thing! I hope you find someone to help you out. I had no idea that it was so hard to find people to help but I don't have a disability so I guess I take things for granted.
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