suggestions for housing/low income

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meeshell

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Mar 6, 2014
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Loved one DX
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MN
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Minneapolis
I am helping my 51yr. old brother who is single and currently living in an apartment, 3rd floor, no elevator. His lease is up 6/2014 and has recently started collecting SSDI (1,100.00 mo). I have been researching low income housing for him from many many resources, and feel like I'm facing brick walls left and right. I've been told wait list's of 1-2yrs. for something that would be independent living, but wheelchair accessible. I live in MN. and thus far the county he lives in has been no help. The ALS clinic has told me they only are involved in his medical needs. I feel he will be homeless if I dont find some answers soon. Anyone out there that can advise me if I am missing some kind of assistance with housing ? This would be Hennepin county, Minneapolis, MN
 
Have you contacted the MDA? Minnesota MDA Office may have suggestions. Also local churches may have resources that can help. If he is a veteran, the VA has fantastic (life saving) programs.

Kind regards,

Max
 
I would check with your local ALSA. They might have resources or contacts that could help.
 
Does he have someone to help him as he progresses? he will not be able to live alone for very long at all. could he live with you?
 
yes, living alone is not an option!
 
I've checked w/every organization I can think of, and I am getting the same response. He is living independently now, and does not qualify for the services that he will need in the near future. The wait list for an apartment is not an option.
 
Matthew has 6 siblings~ 3 of which live near, all who are working full time. I am one that can help, but my home is definitely not adapted for his abilities down the road....the reality of it all has made it very difficult to help him w/a place that he would want to be and feel comfortable. I keep wondering if I am missing some kind of help for people w/disabilities. If he didnt have family members close, what would his options be ?
 
He is going to need lots of help and will not be able to live alone as everyone say. His siblings need to pitch in a help when they aren't working. Weekends or when they are off. Do all their spouses work as well. Could they clean the house or make simple meals that could be warmed up. Run some errands. Are there any other relatives, friends, or cousin who would at least sit with him. I don't know how much it would cost him but could he get a medical alert button that he could use to call for help if needed. Could you hold a benfit for him to raise money? Just a few suggestions. Sorry, I'm not better help. Kim
 
His needs will be changing constantly and depending on his speed of progression the assistance will only increase. It is unfortunate that our country does not help with care for most citizens. Now, if he is on Medicaid I think you can get nursing home care covered.

I think all the siblings need to get together and have a come to Jesus meeting--if 6 sibling all pitch in either with care or financially then the burden will not be too great on any one person. ALS is an ugly disease and puts a huge burden on family. We have had a few members over the years without any family--They struggled to hire help and deal with their disease alone and their lives were very hard.
 
Thank you everyone for suggestions. Just to clarify, Matthew has 6 siblings, only 3 of them live close enough to help. I am one of them. All of us are willing to help with his needs no doubt.The problem is housing. He would like to live independently as long as he can. His income will only allow him to afford section8/low income housing~ which I've been told either the wait list's are closed, or 1-2yrs. His age is 51 and that along w/the fact that he is currently able to care for himself....he isnt qualifying for a cadi waver or other income based help. His major issue soon will be the feeding tube that was placed. His ability to swallow is becoming more and more of an issue, therefore the weight loss etc. His dexterity and gripping, will make it really difficult to use the feeding tube on his own. I can help him two days a week, others can help w/certain things in the evening/weekends....but he at this point does not want to burden any of us by living in our homes. I've tried to reassure him he will not be homeless, but this has created such stress along w/everything else having to do w/the changes in his symptoms. His legs are very strong~ it's his upper body, neck strength, swallowing that is the worst. My question has more to do w/the fact that there has not been anyone who has been an advocate for him in regard to what lies ahead, and help with his living situation. He has no spouse, no children.

~thank you for that. I've made so many phone calls/e-mails, the one person I did talk to at the als clinic made it perfectly clear she had nothing to do w/housing and didnt offer any resources either.
 
I think what we are trying to ask is whether you/your sibs would be able to supplement his income to give him more housing options. An example would be living with someone who would serve as his caregiver, in a residence that is wheelchair-friendly, and paying rent/a stipend for that care. Many people in nice homes have lost their jobs, have mortgages that are under water, etc. and could use some financial help. Another option is his renting a place and being the landlord, taking in a student or semi-retiree, on the same basis, trading work for rent/board.

Anyway, the short answer to your first question is that someone totally alone would generally spend down their assets and go on Medicaid for an in-home caregiver or nursing facility placement. In Matthew's case, he may only need periodic help to give him feedings, for now but of course will need more later. In some areas, Medicaid reimburses some good options. In others, it is only a snake pit.

A posting on local portals, including neighborhood centers/schools/newsletters, laying out some options and seeking responses might yield some referrals and/or actual possibilities. I would also check in w/ the social work dept. at local hospital(s), ask to post on the ALSA chapter site, check in MDA, talk with the director at any local visiting nursing agencies, hospices, etc. Assuming he has local friends, I would try to tap his own network -- you never know who knows who. Clergy, teachers, tradesman, anyone w/ community connections might be able to help. A larger question is how much he wants to stay in the area he is now. I would have a long talk with him about what he wants and what he is willing to trade off toward his most important goal.
 
have you looked into a retirement apt type situation? we have a place here that is apartments with security, basic house keeping and a cafeteria and it is connected to nursing home. Many of the residences there live compleately independently, even drive. for an efficeintcey apt it runs around two grand a month....including house keeping, two meals a day and utilities(no phone, got to do that yourself). there is no health care, that would have to be hired in.
anyway, something to look around at and see if something like that exists in your area, might fill the gap of time before he needs full time help.

is he on disability yet? there should be other help out there for him. keep asking at social services, it just takes finally talking to the right person that helps

and all that lgelb said!
 
Dreams of independence die hard. With a feeding tube he will need daily attention, several times a day. A once a day visit will not suffice. Barbie seems to have the only logical answer, looking into nursing home care through disability. By the time he gets set to get into an apartment he will not be able to manage independent living at all. The realities are difficult to accept but inevitable. At least explore the steps to take to achieve this. That way the time you spend with him will be quality emotional support. The very best of luck.
 
I'm not as pessimistic; there are PALS living alone w/ paid (in some form) caregivers in everything from apartments in NYC to acreage. I don't think any PALS' life is easy, and there's a point where you can't compare the price of whatever freedom is left to the benefit (freedom's just another word for nothing left to lose, like Janis said). That calculus is best left to the individual.

The cost for an agency-supplied (preferably not!) FT caregiver on a breakfast-to-dinner shift is very similar to that of most SNFs on a cash pay basis, and you don't have to start with 24/7 care, esp. if friends pitch in. That is why I asked about resources. If each of the sibs contributed, staying in home for the foreseeable future seems possibly doable. Why institutionalize him unless/until it's absolutely necessary? I didn't mention group/assisted living because most will throw him out once he needs lift transfers.

I understand what Pat is saying, but a "dream of independence" sustains PALS through uncountable, unimaginable losses and don't we as caregivers, family, friends support whatever remnant of the dream we can?
 
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