Here you will find links to help your child purchase a own home in the
community, or other living options where housing is kept separate from the
support services your child will need.
National Home of Your Own Alliance
Minnesota does not have "National Home of Your Own Alliance" program.
Instead, it has
the Home Choice Program.
Habitat for Humanity
Opening Doors an on-line housing publication for the disability community
HUD's page for people with disabilities
Good Neighbor Policy The U.S.
Department of Housing and Urban Development launched an
initiative to sell thousands of HUD-owned homes for $1 each. Under the "Good Neighbor Policy," single-family homes that are acquired in foreclosure actions will be eligible for sale to local governments around the nation for $1 each whenever the Federal Housing Administration is
unable to sell the homes for six months. Local governments can then sell them to low-income families or groups that provide residential services or job training. A list of available homes is available on-line at this website.
Home Ownership -- Things to Think About
HUD's People with Disabilities - includes HUD Initiatives, New/Noteworthy (news), HUD Resources, General Info and Links
Reference Links & Info on Housing
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People with disabilities and their families look at places to live where natural support is easier to find, such as co-housing (or cooperative or clustered housing).
The Co-Housing Company
The Cohousing Network
National Cooperative Business Association, housing page
Camphill of North America
Co-Housing and Intentional Communities, Carol's links
Intentional Communities in the NW
Resources for Getting Started
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Autism Community Home Page Dedicated to sharing ideas on alternative living arrangements for autistic people
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Home Modifications and Accessibility, at the Family Village site.
NIDRR Center for Universal Design (North Carolina sponsors it)
Idea Center at SUNY
Resources, Inc - Accessible Housing - Housing needs of persons with
disabilities have historically been overlooked and ignored. For instance,
current Medicaid regulations guarantee a person with a disability the right to
live in a nursing home, but do not guarantee the right to live in the
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The following is a journal of my stumbles through the system trying to match the dream Daisy and I have for a home to what the system can provide. I apologize that I don't always seem to have my feet on the ground, but I am dealing with dreams, and I've always had a lot of faith in dreams when they seem to "feel" right, and matching dreams to reality is a funny process. I just hope the following journal helps other families in matching their dreams to whatever their systems provide in their part of the country. I am no expert in "working the system" except that I am persistent in following those dreams, and other people I'm sure could do this much better than me, but I just wanted to share this story because there must be something in here to help someone else.
Other people on the OKA list helped form the dream Daisy and I have now for our house. Also, it came from our hearts. First, Daisy and I want to live near each other. We need to separate but we have been living closely for 25 years and she is really the only family I have. I want to make it easy to see what is going on with her. I want her to be able to knock on my door and stop in for a cup of hot cocoa on the spur of the moment. Yet it is time for me to build my own life, and Daisy, too. She is a social person and has always enjoyed living with others. She has told me in various way that she needs people who are active, who self-determine, and who are verbal. She may want to marry someday.
The physical dream looks like this: A 3 bedroom house. Daisy has a master bedroom with an accessible bathroom. She has a room for a live-in overnight person and one roommate of her choice. The dream is that she can choose who lives in her rooms and may not always need a live-in overnight person at some point. She might want two roommates with disabilities or she might want no roommates who have disabilities. Attached to this home is a small apartment which has a kitchen area, a bedroom, a social area, and a bathroom as well as a separate entrance. The home is within two or three blocks of somewhere Daisy can purchase food, or preferably a small mall where she can meet others and socialize a little, shop if needed.
By now I am sure your eyes are rolling. I agree this dream is large. Sometimes I think it got a little out of hand. But who knows where it will lead.
Our first efforts involved working through Habitat for Humanity to build a home for Daisy. Habitat for Humanity (in the Twin Cities) is restricted by a couple of things: an application process which is difficult to get through if you have unusual situations which are not understood (like counting boarder, waiver income for live-ins used as support persons). They also have a small, standard floor plan which they can make accessible but does not give much room for a large wheelchair in individual rooms.
As I was worrying about these problems, I arrived at the Seattle Self-Determination Conference. I met Jay Klein who advised me to abandon Habitat as they probably are too inflexible. There were other ways to build Daisy a home.
Jay said that 1) the home I am dreaming about sounds possible 2) that I can use boarder income for mortgage eligibility 3) that there are funds to help with accessibility and other ways to do it. He told me to contact him.
When I came back home, I met with Dennis Collins at ARC Minnesota who runs the Home Choice program here. I wanted to get a basic understanding of what he said Minnesota offered before I turned to Jay for help. He told me the following:
1) the home I am dreaming sounds impossible
2) that I cannot use boarder income for mortgage eligibility, although it would count towards income eligibility (making some people ineligible for certain assistance)
3) if I live in the property, Daisy loses the flexible 50% of income allowance for mortgage which Home Choice offers
4) he didn't know how I could prove income from a waiver which could contribute to the live-in's portion of the rent, but told me I could use the GRH (group residential housing amount) which came to only about $200 a month for income to use for mortgage eligibility
Basically, Dennis could not visualize I could build this 3 bedroom home with a mother-in-law apartment attached which I had been dreaming about.
September 3, 2000
I emailed Jay Klein who told me the following:
1) the home I am dreaming about still sounds possible.
2) He referred me to Steve Allen in the Fannie Mae program in Washington, D.C. who told me that boarder income **can** be used. He said they like to "have history of boarder income for a year or two", but without that it still can be done. He is going to talk with Dennis Collins in MN Home Choice tomorrow to tell him how he can do that with Daisy.
Steve also said I could use whatever amount the waiver allows for the live-in as boarder income as well.
3) Jay also referred me to Diane Sprague of the Housing Finance Agency in Minnesota. I spoke with her and she was very knowledgeable about a) programs banks have to help individuals in certain communities, but said that the Home Choice program knows even more about that and that I would be going to classes to learn about those opportunities through the Home Choice program if we go through that; b) there is a new agency, Freddie Mac, which is similar to Fannie Mae and has some really unique programs I may be interested in which may be coming along soon. c) HUD really can do nothing for individuals in our area at this time who want to participate in new home construction in this area. She said there are some experiments going on in limited areas with people who have been long-time Section 8 holders to help them become homeowners, but nothing for people with disabilities and nothing for new applicants for new construction in Minnesota although this has been done in other areas.
4) I emailed my social worker who wrote back that I can count the following for the live-in from Daisy's Community Self-Determination Waiver: If we have 3 people living in the home, then 1/3 of the amount of board and living costs -- so add up the mortgage, the utilities, (can we count an amount put aside for home repairs?), and food and divide it by 3. That is a higher amount than 1/3 of the mortgage.
5) Regarding the 50% of income allowance for figuring Daisy's mortgage eligibility, there is a way to maintain that, Jay said. I can go into it as a silent mortgage partner rather than a co-borrower. If I am a co-borrower, I get approved for what I can afford to pay to a mortgage for one portion of the mortgage. So, it stands to reason that I also could be approved for a mortgage to purchase part of this house without being a co-borrower, exactly. I would take out a mortgage type loan and put that in as a down payment towards the house. I would still have ownership, control over a certain percent of the home. Daisy would not have to pay that portion of the mortgage off unless she sold the house. I could insure it so if something happened to me it would go to her. Yet I would not be a co-borrower. Daisy still could afford to spend 50% of her income on home mortgage through Home Choice, according to Jay Klein.
I could think of that as being responsible for the cost of building my mother-in-law unit.
Daisy's income would consist of:
her SSI + work income + $200 food stamps (I didn't know she could get food stamps? apparently she is eligible -- and could also get them for her live-in, apparently)
That's about $800 at this time
Her boarder income which would consist of from the waiver, for the live-in I think at least $700 for food & mortgage
Plus her roommate income which would be about $300 I guess
One list member from California had reported earlier that his waiver kicked in some more when the need arose. I heard there is also some housing amount the waiver could provide but I still don't know that part. I mean, if she is in a group home, they pay for the house too, and this sounds a little cheaper than that to me.
It might be likely that we could get her ability to pay a mortgage up to about $1000 a month, I'm not sure. I could pay $400 or $500 a month, I guess, but it probably would be towards that silent mortgage, but still reduces the cost of the house just as much.
So just dreaming I'm imagining a mortgage of about $1400 a month. I would think that could build a lot of house if we do it the right way.
Then, with a large down payment from me (could I get a mortgage for $50,000? That is not a large mortgage.) How much would I be paying per month on that? $400 or $500? That sounds about right to me. Anywhere I'd go, unless I rented a room not a separate unit, I think I'd have to pay that much. Maybe I could get some $s off my rent by doing some overnight asleeps next door in my unit to relieve the live-in, if it works for Daisy (and me).
What if the live-in quits suddenly? My god. What if her roommate moves out without notice? It sounds like a lot to coordinate.
I'm almost thinking an agency of some sort should coordinate this. A microboard? Some kind of group trust/insurance things parents get together and do?
Well as you can see we are still on the planning track but there is more hope today.
September 16, 2000
I met Dennis at the ARC conference and talked with him about boarder income, live-in caregiver expenses which could apply to mortgage eligibility, and any other sources of income which could apply to mortgage eligibility. He said we need to be sure that both the boarder income (from a roommate) and the livein income from the waiver can be counted. I said I wanted to be sure there is no other possibility for the consumer directed waiver to pay for some of the mortgage.
September 18, 2000
I spoke with a county representative who assured me that 1/3 of the mortgage cost (for live-in caregiver expenses) is all that can come from the MR/RC waiver in Minnesota and it is very clear that nothing else can be used towards that. SSI is to be used for her food and housing expenses, not the waiver. However, I could speak with HFCA to be sure if I wanted to. He knows that things are getting more flexible all the time and maybe there is something he doesn't know about.
I told him I wished that there were some way to help pay for the house from the consumer directed support grant since the house itself is attracting, providing support (from me, her roommate's support staff, the accessibility, connections to community, etc.). I asked him if he'd read the ARC memo telling about funding authorized for HUD for people with disabilities. I commented that usually these funds go to group living situations through nonprofits, not individual housing, and hoped it wasn't going to be the case this time.
September 19, 2000
I just had the most interesting discussion with Larry Cutler of the National Medicaid Office. I tried to reach Mary Jean Duckett at 410-786-3294 but instead reached a technical assistant, Larry Cutler, at 410-786-5903. Talk about nerve, I go right to the top! But I am getting frustrated. Well, he is too, apparently.
He described to me a Medicaid program which is intended to be a medical program. I said, yes, I know, people with developmental disabilities were being supported by a program essentially medical in nature, that is one of the problems, why they ended up in state hospitals. Then waivers came along to help solve that problem and get them back into the community. It tried to bend the rules for an essentially "medical" program and still provided room and board for those in ICF/MRs (which are intensive care facilities for the mentally retarded).
Well, we seem to be stuck at the bottom rung of the ladder, trying to get off the medical model and get our people into the community. If a person wants to live in an unlicensed, nonmedical facility, they do not get help with room and board. Well, I do understand the reason for that. I'm glad the medical part is being left behind, it never should have been there in the first place.
He said they have had deep discussions with HUD about providing support for that population. There is a huge group of people coming along which will be growing year by year which will need that. I personally hope so, that more people return to the community. But this thing about no room and board sort of plugs everything up, doesn't it?
He said they have talked about HUD doing this for people with disabilities, to help with more home ownership. It happens in some areas now but not all. I told him, yes, HUD does have the Section 811 program but it is only for group and assisted living through nonprofits. Nothing in our area for home ownership.
He said that it will require changes in law and appropriations in Congress and that may be a long, long time. Otherwise HUD cannot do this.
I pointed out to him that it happens like this everytime we move our people. We move them from the state hospital to ICF/MRs and we suddenly need waivers. Then there aren't enough waivers to go around. The government has saved $s on the state hospital closings (after it is finished, not immediately) but there are never enough waivers and they are hard to get. Finally there is a big push by people and more waivers come through but they are never as plentiful as hospital slots.
Now people want to go from ICF/MRs to community homes and home ownership, rental. The GRH is meant to provide for that but means the home must be licensed. Licensing itself means separation from generic supports and community and freedom. You can never get away from the medical model it seems.
He said, yes and we cannot step over that line, either. When it is not medical services we cannot pay for it. We are paying now for supervision, PCA which is not really medical. But we are not designed for that.
I asked if MiCassa would solve the problem. He didn't comment except to say that this legislation was designed by people with disabilities and the president and Donna Shalala has been supportive of it. He said his dept. have sent numerous requests for changes in the longterm care system to Congress, and by the time it gets voted on and comes back to us there are changes and the essential part of the legislation is gone. Then we have to scramble to make those changes in a number of weeks. At this point he sounded truly frustrated.
He said HUD should be providing assistance for these people but that it wouldn't happen unless appropriations are increased and legislation is passed.
What struck me here is that no one sees the people coming out of ICF/MRs, happy to be in the community to buy their own home, and finding that the support they got in the ICF/MRs is dropped and now they are on their own for room and board with just their SSI. Of course, the general population doesn't see the problem as less money being drawn from one account (the medical ICF/MRs and hospitals) and put into less expensive options (rental assistance). If they could see that transfer, if the legislation could be done in one piece, maybe it could gain enough popularity to pass. It might make sense when it does pass.
There is a lot of money going to the ICF/MRs which could be unravelled and used in different ways if only . . . . but then it wouldn't be a medical model .. . . which Medicaid couldn't pay for . . . but not being a medical model would improve things in so many ways.
It's the next step, like the waiver problem, I think.
He said my best hopes were to speak to the state Medicaid office who do pay for things like room and board on occasion although the federal medicaid cannot. They have other things they add into it and would know what those things are.
So he gave me the name of the state medicaid director for Minnesota as state or local governments initiate adding funds for board and room to the medicaid waiver.
The Medicaid Director in Minnesota is Mary B. Kennedy at the MN Dept of Human Services, 612-282-9921.
He also suggested I contact HUD to make sure there is nothing there that can help.
Boy. Hope I don't get in trouble for calling all these people but it sure is fascinating.
September 22, 2000 Part 1
My broken arm is keeping me at home able to pester all the bureaucrats in the country! But I've learned a lot!
I kept repeating that there is a serious problem here with getting people with developmental disabilities back into the community. In state hospitals, money was spent for board and room, in licensed nursing homes it was. When the waiver allowed people to go into group homes, the states added the GRH (group residential housing amount which can be up to about $1000 cap -- I thought it was only $200 but you can request more) and help with the housing could be accessed. However, when people live in their own home in the community, neither medicaid or any other program helps with housing costs except for HUD. We all know how stressed HUD is with all kinds of homeless people. To add the big group of people with developmental disabilities who may be moving from group homes into the community is not a reasonable expectation.
However, I did learn some things. I learned that, for the larger cities (1,000 of them in the U.S.), HUD has programs that each city council's planning department could funnel into home ownership for people with disabilities if the city council cared to. It could be in the form of loans which have a large portion "forgiven" in 5 years or so to assure that people really will live in these homes they are getting. Also the Section 8 program has given permission for Section 8 certificates to be used for home ownership. Each local office has to decide what percentage of certificates will be allowed to use for these home ownership certificates and what conditions should be placed on them.
I would imagine it would be good for our local advocacy organizations to approach each office and ask to let them know the special needs of our population. For instance, our people often need live-ins and having a roommate can provide support, so flexible allowances for people living in the home who are not related to the person should be included in these home ownership certificates for people with disabilities. And some way to count only the portion of the mortgage which goes for that person's mortgage responsibility, because livein caregiver allowances and boarder income probably would be included to help pay the other parts. hopefully. Anyway, a system that coordinates and allows for whatever the system is in that region for that group of people. Maybe a connection between developmental disabilities departments and Section 8 offices, I don't know.
However, maybe HUD is not the agency to be funding this population. It sure would make it complicated, like I described above. Medicaid seems to think so. At any rate, Medicaid cannot do it being a medical model. I personally think MiCassa (with the money following the individual, not the service) would solve the problem, but that's the only solution I've heard. But now I'm straying into the future not reality in the present.(continued)
September 22, Part 2
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