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Thread: Economics of Medicare & SSI, &living independently

  1. #1
    Junior Member Heatherlev's Avatar
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    Economics of Medicare & SSI, &living independently

    Hi all,
    My brother's still in the hospital now recovering from his surgery (due to stenosis, a congential spinal deformity). He's probably about a c4 incomplete or so; can use his hands but has very little dexterity or strength, and can walk with a walker but slowly & not very far.
    It's likely he'll eventually move back in with my parents. But we all agree everyone would be happier and more sane if he could live on his own. He gets about $1000 per month from SSI, and can get about 10-15 hours/week of help (without paying for it himself) through a community agency. But I think he needs more help than that. How can he afford an apartment, plus extra assistance? Any suggestions? How do people live independently? Does everyone have a job, or do you live on SSI? How's it work?

  2. #2
    Senior Member Clipper's Avatar
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    I would think that since your brother has an incomplete injury, it will be "easier" for him to become gainfully employed and either live independently or with minimal assistance. His goal right now should be to maximize his abilities.

  3. #3
    Many people do initially live with a family member until they get their finances straightened out or can get back to work. It is important to look at this being a temporary arrangement, and still try to maintain as much independence as possible.

    One option is to get a place with a roommate, and pay for part of the roommate's rent in return for them doing things like cooking, housework, etc. 10-15 hours weekly is not unusual for attendant care. It is important to group those things he needs into that time as much as possible...getting very organized helps. Does he need help with bowel and bladder management? Dressing? Bathing? Undressing? Does he have a choice of how this is set up (ie, does it have to be 1-2 hours daily at the same time or can he do 1 hour AM and 1 hour PM?

    Obviously NYC is not the cheapest place to live. Was he working or going to school before? Can he go back to this? Has he been working with a VR counselor or DVR?

    Is he still in rehab? Is it a good rehab center experienced in SCI rehab? If so, the social worker, case manager, and/or vocational rehab counselor there should be helping him and your family look at all the options and get him hooked into community resources to help him reach his goal of living alone eventually.

    (KLD)

  4. #4
    Junior Member Heatherlev's Avatar
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    Just wondering, and maybe this is a dumb or ignorant question, but how do people get by who cannot work, they need some hours of help daily, and have no family to live with? Do they end up in a nursing home as a Medicaid patient? Can someone live in their own (i.e. in their own apartment) on just SSI and the few hours of assistance they can get from a social service agency, or is it economically impossible?

  5. #5
    Purplegirl, a lot of this depends on what state/community you live in. In my area, housing is so outrageously expensive, and the waiting list for Section 8 (subsidized low income housing) is so long, that few people who live on just SSI can afford their own place, and certainly not by themselves. With roommates it may be do-able. In my area I find many newly injured folks are moving out of the area, or living with family (at least temporarily), either here or in other states immediately after they complete their inpatient rehab.

    In some communities there are attendant care services paid for by the county or state for those with low income, but the availability of attendants may vary, esp. in areas with higher costs of living than when these programs will pay.

    Unfortunately for most, acquiring a disability means becoming poor unless the person is able to work at a fairly high paying job. The disincentives for working at lower paying jobs often are too high to justify working at all. Loss of attendant care and health care coverage under Medicaid are probably the two most important disincentives to working with a disability.

    (KLD)

  6. #6
    definately have him get a job, u dont want him living in the projects/ sect 8 housing.

  7. #7
    Originally posted by SCI-Nurse:

    Unfortunately for most, acquiring a disability means becoming poor unless the person is able to work at a fairly high paying job. The disincentives for working at lower paying jobs often are too high to justify working at all. Loss of attendant care and health care coverage under Medicaid are probably the two most important disincentives to working with a disability.
    (KLD)
    *sigh* Unfortunately for most my butt. I don't have an extremely high paying job and I am nowhere close to being poor. What an awful thing to imply. To an newbie reading this thread: DO NOT TAKE THAT ADVICE TO HEART!! True, I am a para and I don't have aides, but I know some quads who are doing fine and nowhere near poor. Many many many SCIs have jobs, and while not making a 6-figure salary, they are financially doing just fine. Also, not every SCI is on freaking Medicaid.

    Originally posted by fuentejps:
    definately have him get a job, u dont want him living in the projects/ sect 8 housing.
    I am inclined to agree with you fuente. He sounds like once he regains his strength he lost from his surgery, he will be able to work just fine.

  8. #8
    Originally posted by SCI-Nurse:

    Unfortunately for most, acquiring a disability means becoming poor unless the person is able to work at a fairly high paying job. The disincentives for working at lower paying jobs often are too high to justify working at all. Loss of attendant care and health care coverage under Medicaid are probably the two most important disincentives to working with a disability.
    (KLD)
    EXACTLY! it's a catch 22! I would have loved to have gone to work way before I did, doing ANYTHING. but, with my health, being without insurance was not an option. I needed my Medicaid and Medicare to survive. It was a long time before I was able to get a job. If he does not have the education or skills right now (and I'm not saying he DOESN'T, he may) to get a good paying job with really good health insurance as a benefit, he'd do best to use this time to get an education so he can get that job. he can probably get help from Voc rehab. they helped me quite a bit.

    i agree with fuentejps...I don't think he's gonna be happy in section 8 housing...it's an unfortunate reality for some, but most section 8 housing i've seen is less than desirable.

    good luck

  9. #9
    Originally posted by Blundy:

    Originally posted by SCI-Nurse:
    Unfortunately for most, acquiring a disability means becoming poor unless the person is able to work at a fairly high paying job. The disincentives for working at lower paying jobs often are too high to justify working at all. Loss of attendant care and health care coverage under Medicaid are probably the two most important disincentives to working with a disability.
    (KLD)
    EXACTLY! it's a catch 22! I would have loved to have gone to work way before I did, doing ANYTHING. but, with my health, being without insurance was not an option. I needed my Medicaid and Medicare to survive. It was a long time before I was able to get a job. If he does not have the education or skills right now (and I'm not saying he DOESN'T, he may) to get a good paying job with really good health insurance as a benefit, he'd do best to use this time to get an education so he can get that job. he can probably get help from Voc rehab. they helped me quite a bit.

    i agree with fuentejps...I don't think he's gonna be happy in section 8 housing...it's an unfortunate reality for some, but most section 8 housing i've seen is less than desirable.

    good luck
    i wouldnt put my dog in sect 8 housing, and ive never been in them, just drove by.
    as for being ok on a low paying job, i think if you dont need much, supply wise youd be fine.
    personally i think money helps, im fortunate as a c4-5 inc i dont need help, its nice to know you have money if u need it.

  10. #10
    Originally posted by purplegirl:

    Just wondering, and maybe this is a dumb or ignorant question, but how do people get by who cannot work, they need some hours of help daily, and have no family to live with? Do they end up in a nursing home as a Medicaid patient? Can someone live in their own (i.e. in their own apartment) on just SSI and the few hours of assistance they can get from a social service agency, or is it economically impossible?
    Seems your brother may not require too much assistance, especially after coming home from hospital and gaining strength and increased function. NY can be expensive to live, but his SSI @ 1000 per month, seems pretty good and the approx 10-15 hrs PCA week het gets (currently, living at home w/parents?) might change after his living situation changes, requiring increased need for PCA hours, which he might qualify for, since he won't have others at home to assist.
    There is his SSI, plus he should be eligible for food stamps (applied through PA office or Soc security office) that can help supplement his expenses.
    Subsidized housing is extremely difficult to get, waiting lists taking up to 5 years or more (and more to just to get ON the waiting list itself!). There is Section 8, a voucher program, as well as subsidized housing that doesn't require voucher (NOT sect8). Most disabled qualify and depends on the property participating, one can go directly an inquire (there is as long waiting list here also as sect8). Sect8 is voucher that travels with you and you find property that is willing to accept it. There are big differences in types of housing you might find - public housing "projects" to upscale high rise buildings, to mixed income condos, etc.

    Is he planning to attend school? This may help him with another resource to assist him with housing, living costs, Care assistance, transportation, etc.

    There are many with SCI who are independent and financially secure. However, there are many more who are not. Given that over 70% of disabled are unemployed, there are relatively very few who are financially independent. Understand your needs and utilize whatever resources are available to help enable your independence as much as possible.

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