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Thread: Home care

  1. #1

    Home care

    Hi everyone, I'm doing research for a documentary about a group of quadriplegics and wanted to find out more about home care. Can anyone tell me how one goes about getting home care? Are there agencies that provide at home care services? Alternatively, is this something that is provided for by hospitals or rehab centers?

    Thank you very much. I am able-bodied, so if this sounds like a naive question please be patient.

  2. #2
    Member cowboyquad's Avatar
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    OK, being able-bodied doesn't make you naive for asking a question. After all are are all just people. In Montana there are two options for home personal care attendants (PCA's) paid for by Medicaid. First there is Agency Based Services where an agency hires, trains, and manages PCA's and then when a client signs up for services the agency chooses which PCA's will work with the client. The second option also requires that the client sign up with an agency but the only reason the agency is there is to bill Medicaid and pay your PCA's. This is called the Self-Directed Personal Assistant Service. After signing with an agency, the client is then responsible for finding, hiring, and managing their own PCA's.

  3. #3

    Home care

    This varies all over the board. Most insurance do NOT cover the type of homecare that most people with SCI require (bowel and bladder care, assistance with activities of daily living, transfers, etc. etc.). Such care is considered by the insurance community "maintenance, unskilled" care (of course we do not agree!!!).

    Some people who have large legal settlements or worker's comp, or who are independently wealthy pay for this themselves. Christopher Reeve would be an example, but this is pretty rare.

    For people who are low income with a disability, depending on where they live, they may be eligible for state/county funding for personal care assistants (PCAs). It varies how many hours you can get (you do not decide this...the program does, and often on a very arbitrary basis), and the program also decides who you can use as your PCA. Some require home care agency staff, while others let you hire whoever you want, including family members. The pay is very low...in most cases it is only minimum wage. High turnover, theft, and even abuse/neglect are not uncommon. Unfortunately this program is not available for people with more than poverty income, so may require spouses to quit jobs, people to even get divorced or to live together unmarried in order to maintain eligiblity. This problem is a major disincentive for people with major disabilities to return to work, as most often the work income cannot compensate for the benefits for PCA care (or health insurance) lost.

    Medicare will pay for this type of care under only very restrictive rules that include being totally homebound. There is a major effort to overturn these regulations/laws on-going at this time. David Jaynes, who has ALS has organized a group to combat this, and was named the Disabled Person of the Year by New Mobility magazine for 2002 for his efforts:

    http://www.amendhomeboundpolicy.homestead.com/

    In the USA, certain eligible military veterans may get an additional amount added to their VA pension for attendant care. This is called Aide & Attendance money. It rarely covers all the cost for the care needed. Some veterans may also be eligible for what is called "fee-basis" partial funding of care for bowel and bladder care needs only.

    You may want to also post this on the Caregiver's forum here, and also post at some other forums such as www.newmobility.com

    You can also get a lot more information about PCAs at these sites:

    http://www.adapt.org

    http://www.wa-ilsc.org/toc2ack.html

    I am sure others will be able to add a lot to my comments.

    (KLD)

  4. #4
    thank you very much for your extremely thorough and helpful reply.
    i was wondering if you knew of any homecare service providers in the new york or tri-state area (or if not, elsewhere in the US) that provide service for the types of individuals like christopher reeve or others who can afford them?

    thanks again!

    [QUOTE]Originally posted by SCI-Nurse:

    This varies all over the board. Most insurance do NOT cover the type of homecare that most people with SCI require (bowel and bladder care, assistance with activities of daily living, transfers, etc. etc.). Such care is considered by the insurance community "maintenance, unskilled" care (of course we do not agree!!!).

    Some people who have large legal settlements or worker's comp, or who are independently wealthy pay for this themselves. Christopher Reeve would be an example, but this is pretty rare.

    For people who are low income with a disability, depending on where they live, they may be eligible for state/county funding for personal care assistants (PCAs). It varies how many hours you can get (you do not decide this...the program does, and often on a very arbitrary basis), and the program also decides who you can use as your PCA. Some require home care agency staff, while others let you hire whoever you want, including family members. The pay is very low...in most cases it is only minimum wage. High turnover, theft, and even abuse/neglect are not uncommon. Unfortunately this program is not available for people with more than poverty income, so may require spouses to quit jobs, people to even get divorced or to live together unmarried in order to maintain eligiblity. This problem is a major disincentive for people with major disabilities to return to work, as most often the work income cannot compensate for the benefits for PCA care (or health insurance) lost.

    Medicare will pay for this type of care under only very restrictive rules that include being totally homebound. There is a major effort to overturn these regulations/laws on-going at this time. David Jaynes, who has ALS has organized a group to combat this, and was named the Disabled Person of the Year by New Mobility magazine for 2002 for his efforts:

    http://www.amendhomeboundpolicy.homestead.com/

    In the USA, certain eligible military veterans may get an additional amount added to their VA pension for attendant care. This is called Aide & Attendance money. It rarely covers all the cost for the care needed. Some veterans may also be eligible for what is called "fee-basis" partial funding of care for bowel and bladder care needs only.

    You may want to also post this on the Caregiver's forum here, and also post at some other forums such as http://www.newmobility.com

    You can also get a lot more information about PCAs at these sites:

    http://www.adapt.org

    http://www.wa-ilsc.org/toc2ack.html

    I am sure others will be able to add a lot to my comments.

    (KLD)[/QUOTE

  5. #5

    home care

    thanks to those who responded to my question for your extremely thorough and helpful reply.i was wondering if anyone knew of any homecare service providers in the new york or tri-state area (or if not, elsewhere in the US) that provide service for individuals who can afford them (either due to settlements, personal means, etc.)?

    thanks again!

  6. #6
    In my experience there are virtually no home care agencies who have nursing staff (RNs, LVN/LPNs or aides) who know anything about SCI...in fact they often know so little that it works better to get your PCA care "off the street" and train them yourself. As a nurse, I am ashamed to say that MOST licensed or trained nurses resent taking direction from a patient who clearly knows more than they do. Even if your insurance pays for agency home care, you still will have to do all the training yourself, including even high tech care such as ventilator use.

  7. #7
    Wow. That sounds awfully dispiriting.
    Do you know of any agencies that I could try getting in touch with in and around New York? You had mentioned that, for example, that individuals like Christopher Reeve receive homecare. Do you know of any agencies that someone in that situation would call?

    Thanks again!

  8. #8
    Check with the Centers for Independent Living in NY, Nassau and Suffolk.

  9. #9
    There are many home-care agencies in a large metropolitan area such as NYC. Just look in the phone book under "Home Care" or "Home Nursing". Most of them will have experience with complex patients in a home setting, although that certainly does not assure that they have any SCI experience.

    You could also contact some of the larger SCI Centers in the area and see who they refer their clients who need home care to. I would recommend calling the social work dept. at the Bronx VA SCI Center, as well as the discharge planners at Mt. Sinai Rehabilitation Center in NYC as well as Kessler Rehabilitation Center in NJ. I know nothing about the NYC area myself (I live on the "left" coast!)

    (KLD)

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