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Thread: Finding PCA care in other states?

  1. #1

    Question Finding PCA care in other states?

    Simply put, the New England winters are making the quality of my life and ability to work/recreate beyond manageable. I?m looking to move to a warmer climate and open to almost any state that would be able to be similar in PCA? independent management and physicians.

    I?m not sure where to post this. Since my injury I?ve only lived in Massachusetts and so I don?t know the experience outside of traveling and living for a month or two in different states. Long-term Massachusetts Has been my home and where all my connections, doctors, care providers exist.

    I?m looking for experiences of people who have had high levels of spinal cord injury and have lived in states that have a similar healthcare system as Massachusetts or have lived in Massachusetts and have moved away or moved to Massachusetts for specialists.

    Are there advocates that could be hired or specialist that exist that may have a roadmap for people with SCI who want to move? I need to move for a variety of reasons. As a sidenote, psychologically I can no longer handle the trauma of losing family members in the same environment. The loss of my brother and my mother within two years has been significantly psychologically challenging.

    I desperately need a fresh canvas and someone to help guide me to a place where the services will be similar. Any and all thoughts are appreciated.

    Kindly, Chaz

  2. #2
    So are you currently getting your PCAs through a Medicaid waiver program? Or are you on Workers' Comp or other state funded program or private health insurance that covers PCA care? I am assuming you are not private paying for PCA care?

    If you have a great private insurance, or Workers' Comp, you may have a case manager assigned who can help you with this, but if you are Medicare/Medicaid, you will have to navigate this on your own. You can also pay for private case management services, but this is pretty expensive, and out of the range of what most Medicare/Medicaid insured can afford.

    If you can narrow down the places you are interested in relocating, the local Independent Living Center/CIL in those locations may be a good resource for helping you to find out about Medicaid waiver program PCA care in that state, which could help you make a decision.

    You can also find information about Medicaid services in the different states here: https://www.kff.org/medicaid/


    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  3. #3
    Quote Originally Posted by SCI-Nurse View Post
    So are you currently getting your PCAs through a Medicaid waiver program? Or are you on Workers' Comp or other state funded program or private health insurance that covers PCA care? I am assuming you are not private paying for PCA care?

    If you have a great private insurance, or Workers' Comp, you may have a case manager assigned who can help you with this, but if you are Medicare/Medicaid, you will have to navigate this on your own. You can also pay for private case management services, but this is pretty expensive, and out of the range of what most Medicare/Medicaid insured can afford.

    If you can narrow down the places you are interested in relocating, the local Independent Living Center/CIL in those locations may be a good resource for helping you to find out about Medicaid waiver program PCA care in that state, which could help you make a decision.

    You can also find information about Medicaid services in the different states here: https://www.kff.org/medicaid/


    (KLD)
    Unfortunately, my injury happened at a time where I was no longer able to keep my private insurance. So I guess I have to start reaching out to independent living centers. I have not found the Independent living Center in my area to be helpful in anyway ? most the time they are very confrontational And it takes diligence to get anything accomplished. On a good note ? I do have a medical fund set aside for things of this nature and so I could begin looking for a private case manager. If you know of where to start looking or know of people who have had success. Have you listed in learning about their experiences. Thank you for your thoughtful response. Zzz and it takes diligence to get anything accomplished. On a good note ? I do have a medical fund set aside for things of this nature and so I could begin looking for a private case manager. If you know of where to start looking or know of people who have had success. Have you listed in learning about their experiences. Thank you for your thoughtful response.

  4. #4
    I have a colleague who is a private nurse case manager. I have sent her an e-mail to ask about how you might go about finding a private case manager to help you. Stay tuned.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  5. #5
    Chaz19, see your PMs.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  6. #6
    Great. Thank you. Greatly appreciated.

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