• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Housing for the Disabled

leelaplay

member
Messages
1,576
Liz Willow posted this to co-cure Feb 26 10

IMO it would be amazing for Americans on disability if this kind of shift happened - a package of money and the individual comes up with her/his own plan for independent housing + care. My bolds and spacing throughout.

I've previously fowarded the National Council on Disability (NCD) recent housing report. However, it was in PDF format.

I received this today and found the first link revealed a report with each subsection available through weblinks, making reading relevant information much easier.

And there is some discussion going on! The US Department of Housing is listening.

Also of note are the links to two media reports.

Two of the links to my previous post on NCD's Housing Report do not show up in that post. Here they are:

The housing report itself can be found at http://www.ncd.gov/newsroom/publications/2010/A_Disability_Perspective.html

The Merrill news story can be found at http://news.medill.northwestern.edu/chicago/news.aspx?id=158014

--Liz Willow


From NCD: Housing Report

On February 23, NCD, along with the University of Illinois at Chicago and Access Living, held an event highlighting the release of NCDs housing report, The State of Housing in America in the 21st Century: A Disability Perspective, in Chicago, IL. Chicago Public Radio highlighted the event that morning http://www.chicagopublicradio.org/Content.aspx?audioID=40211 and it was covered by Medill Reports Chicago that evening.

The report offers a comprehensive overview of housing and answers important questions about the current housing options for people with disabilities living in the United States. The NCD report is one of the most comprehensive national studies of housing for people with disabilities. NCDs Chairperson and First Vice Chairperson, Linda Wetters and Pat Pound, met with stakeholders the day before the event to discuss ways to use the report to implement new strategies to open up housing opportunities for people with disabilities. Lynne Grosso, Director of Enforcement, U.S. Department of Housing and Urban Development, responded to NCDs recommendations at Tuesdays events. The publication includes detailed reports in several areas of affordable, accessible and integrated housing.

For more information about the housing report, please contact Joan Durocher at jdurocher@ncd.gov.


For disabled, 'affordable' independent living is the ideal, but often out of reach
by Julia Edwards
Feb 23, 2010

After the unveiling of a 500 page national report on housing opportunities for disabled Americans Tuesday, Harvey Raben stood, leaning on his walker to fight the effects of Multiple Sclerosis, and asked a pointed question.

The heart of the housing question for disabled people is: Will there be more vouchers open so more people can get into decent housing?

Lynn Grosso, of the U.S. Department of Housing and Urban Development, answered: The need far outweighs the availability.

HUD is due to announce funding for additional vouchers next month, which would allow 4,000 non-elderly people with disabilities nationwide to rent in the private market. But according to the panel from the National Council on Disability, the University of Illinois at Chicago and Access Living, the relief may be too little too late.

Raben, who has lived with Multiple Sclerosis for 35 years, said his life changed when he acquired a voucher six years ago after a six-year wait. He now lives in an accessible high-rise apartment on Sheridan Road where his children can visit him. He has more money left after rent to spend on food, transportation and other facets of his newly independent life.

According to the report, Rabens home amongst non-disabled neighbors is optimal overinstitutions like nursing homes, where residents are isolated and lose their independence. But affordability often stands in the way.

While not a substitute for permanently affordable, universally designed and integrated housing, vouchers have the most potential for helping people with disabilities find accessible housing in a livable community, said Janet Smith, from the Vorhees Center for Neighborhood and Community Improvement at UIC that contracted the report. Congress must increase housing choice voucher funding targeted at people with disabilities.

HUD originally proposed the additional 4,000 vouchers in June 2009, but the revision and feedback process has lasted 10 months. Once released, individual housing authorities throughout the country must apply for the vouchers. Waiting for more funding, the Chicago Housing Authority closed its lottery for a spot on the voucher waiting list nearly two years ago.
One thousand of the proposed vouchers are specified for disabled people who want to move out of nursing homes and may require at-home care.

Joy Hammel, a professor in the disability studies program at UIC, said that to optimize a disabled persons independence, housing vouchers should be combined with Medicaid, which funds institutional health costs.

You could create your own plan and the money would follow you. Instead of spending $40,000 on a nursing home a year, you would get a $40,000 package, said Hammel. The two need to happen together for most people with disabilities. Right now they are two completely different policies.

Following the presentation, Grosso encouraged the audience half in wheel chairs, half in seats to attend upcoming public hearings with HUD representatives to voice their concerns and bridge the gap between people and policy.

Segregated housing can no longer be tolerated, said Grosso.


-
 

Dr. Yes

Shame on You
Messages
868
You're right IF, this would be fantastic. I can't understand why they haven't done something like this already. They wouldn't even necessarily have to make the packages equivalent; nursing homes cost insanely more, in many cases, than the cost of living in an expensive city like New York. It would cost a fraction of what many nursing homes charge to house a disabled resident in a much nicer apartment and provide a home attendent! Why make the government (i.e. taxpayers) pay so much more for what is usually sub-par care anyway? For those who are capable of and willing to get out of the nursing home system (and there are MANY), this is the only ethical solution. For everyone else (except the nursing home owners) this is a no-brainer financially speaking. I (and all social workers and other health workers I have spoken to) are baffled - or else very cynical - as to why this sort of plan hasn't already been implemented.
 

Carrigon

Senior Member
Messages
808
Location
PA, USA
I live in a government run apartment for the disabled and elderly. The problem is, they also allow the mentally disabled in and no one but me in here seems to have CFIDS/ME or MCS. So I'm in with a bunch of people who don't understand, and some of the mentally ill people are scary. IMO, the mentally should never be lumped in to live with people who are physically disabled or elderly people.

What I would love to have is an apartment building that is just for CFIDS/ME/MCS/Fibro/Lyme patients. We need to be with people who understand us and what we go through.
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
Sorry that's happening at your apartment Carrigon and thanks for letting us know. You're absolutely right, we need housing for patients like ourselves but this does look somewhat promising.

Dr. Yes, I hope you get an opportunity to be in housing like this soon.
 

creekfeet

Sockfeet
Messages
553
Location
Eastern High Sierra
When seeking housing for myself and kids, and rejected by homeless shelters because of our illness, I came across a bulletin announcing that county's opening of an affordable housing complex for HIV+. No reason we couldn't have same for ME/CFS. I hope, someday.
 

Tammie

Senior Member
Messages
793
Location
Woodridge, IL
I am wondering how we will even find out if this is available, and if it is going to wind up being one of those thigns that is inaccessible simply bc of the physical requirements to apply (ie: for many thigns like food stamps, for instacne, they require you to be at a place that is an hour away from me at 8 in the morning for an appt.....I cannot function in the morning no matter waht I do and I cannot handle riding in a car for an hr, let alone drive myself there...there are a few otehr physcial limitatiosn taht make stuff like this really difficult, if not impossible, for me to take advantage of, too)

.....at this point in my area they do not even take people on the waiting lists for the housing vouchers,and they have not for quite soem time, so how exactly can we get our names down somewhere so that we can take advantage of this if it becomes available? I spent 96% of my income just on rent and electircity for Feb (& I live in the cheapest apartments around and have my heat set at about 65 now - it's freezing in my apt).
 

Carrigon

Senior Member
Messages
808
Location
PA, USA
Tammie, I have the same problems with actually getting to the help. They never take into consideration that some of us cannot go out or we have trouble traveling. They just expect you to act like a healthy person and be able to get there. Even the last time I came up for social security medical review. They forced me to go out of the county to see their doctor. And I told the social security worker that I didn't have a way of going out of the county. He threatened me and said that I better find a way to get there or they would most likely terminate my social security benefits. It was horrible. I was lucky enough to get a friend to take me, but if she hadn't, I would have had to take my grocery money and use a cab and had no money left for that month at all for food. All the programs here for help are either in very unsafe locations or they are impossible to park at. It's very hard for someone who is sick to get to the help.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Thanks Carrigon for posting this. I think that is awful that you are put in with mentally ill patients none other than they are loud, scream, talk to themselves and cause a rukkus!
 

sarahg

Admin Assistant
Messages
276
Location
Pennsylvania
Carrigon, social security is required by law to reimburse you for any transportation costs (gas, bus, taxi) that you incur getting to and from required appointments with social security doctors. (they send a form with the appointment info, I think) So if there is a next time make sure you ask about it if there is no form. They won't pay up front, but at least they pay you back, I'm not sure how long it takes because the only time they asked me to go to "their" doctor, they canceled the appointment like 4 days beforehand and decided they had what they needed already.
 

Carrigon

Senior Member
Messages
808
Location
PA, USA
Oh, they do talk to themselves. I have one neighbor, about a door down from me and across the hall, he hears voices and screams at the voices. He even checked himself into the hospital for a few days and it did no good at all. People like this do not belong with normal people.

The place I am in is a low income public housing apartment building for people who are poor, disabled, and elderly. But they lump mentally disabled in there, too. It's a nice building. The rooms are large and sunny and pretty modern. This place was built in the 70's. The heating system is crap. It barely works. However, they did get a new grant this year and are supposed to be upgrading it in the summer or fall. The air conditioner works. The stove is too small, but works, same with the fridge. Not enough counter or cabinet space. The bathroom is okay, but could also use cabinets. You tend to live cluttered because there is no place to put anything. The bedroom closet is a good size. They just put in new washers and dryers in the basement. Not enough, only five machines for like ninety seven families, which is crazy. But alot of people go out to do it or have their families do it, so it's not nearly as crowded as it could be. No assigned parking. So, if you can't walk alot, that isn't good. I go out in the morning or I look on the security cam and see if there are several available spots and then go out. The building is pretty safe, it's keycarded. There is some form of security guards, but you rarely see them. Sec cams in the laundry room, elevators, lobby and some of the parking lot.

It's not a bad place to live, but the neighbors can get seriously annoying, like with the noise torture. I only hear it in the bedroom at the moment. My neighbor on the other side of me is great. He makes no noise ever. But the ones attached to my bedroom wall never shut up except at night. I am very fortunate that they go to bed usually between nine and eleven and then it's guaranteed quiet till morning.

It's not a bad place to live, if you can stand the neighbors. I had to get on a waiting list to get in. It took from around that sept/oct that I applied all the way through Feb for them to call and tell me they had an available apartment for me. And then it took another month till I could move in. The housing authority does not tell you if or when you will get an apartment. I had no idea if I would, so I couldn't even sell the place I was living in. I was too scared of what would happen.

Rent is a third of your SS check. You cannot get cheaper rent anywhere for something like this. Utilities are included, except for the laundry. Laundry is like six dollars every time I do it. But that usually lasts me a good ten days or so. I try to only do it twice a month.

I feel very blessed to be in this place. Even though I get noise tortured, it's not a bad place to live in at all. They also have a food program here and a visiting nurse program, both for free. But the visiting nurses gave up on me. They found the irregular heartbeat and the low grade fevers. But I think they decided I was a waste to keep visiting since it's chronic and they can't do anything for me.

Each apartment also comes with a pull chain in the rooms, so if something happens to you and you can reach a pull chain, an alarm goes off so they know something is wrong.

They don't let you live dirty here. They do an annual inspection, the one drawback is, they will come on in whether you are home or not. As long as you find a way to make it look neat, it's fine.

The exterminator comes about every four months. The building still has giant mutant roaches the size of my hand, but you rarely see one. That's not an exaggeration. I saw giant roaches the size of my hand march across my apartment the summer before last. They were renovating the upstairs apartment and drove them on down through the walls. Never had it again. But recently saw a giant dead one in the hallway. They are that big. Like I'd hate to see what they mutate into in another ten or fifteen years.

That's about it, every place has drawbacks. The annual inspection nearly kills me because I'm not well enough to do the cleaning. But beyond that, and the neighbor noise, I really do like living here. Do not be afraid to apply at the housing authority. The income limit is alot higher than you would expect, you can qualify.
 

Carrigon

Senior Member
Messages
808
Location
PA, USA
Carrigon, social security is required by law to reimburse you for any transportation costs (gas, bus, taxi) that you incur getting to and from required appointments with social security doctors. (they send a form with the appointment info, I think) So if there is a next time make sure you ask about it if there is no form. They won't pay up front, but at least they pay you back, I'm not sure how long it takes because the only time they asked me to go to "their" doctor, they canceled the appointment like 4 days beforehand and decided they had what they needed already.

That's the problem, they do not pay you up front. What are you supposed to do when you do not have the money to get there? And it takes them over a month to give you that money back. They don't care. And there is no excuse for forcing you out of the county when there are plenty of local clinics five minutes from where you live.