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Thread: Being Denied the Equipment I Need to Leave Rehab

  1. #1
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    Being Denied the Equipment I Need to Leave Rehab

    I'm not even sure if this is the right forum to post in or not, but it seems to fit better than the others because it is about equipment (or rather, lack of equipment).

    I've been basically held prisoner in a rehab facility for 144 days now. I have been medically discharged since Sept. 7th, but I still don't have the equipment I need to move on.

    I have had my SCI for 7 yrs now and have used a manual wheelchair as my main chair because I was able to and it made more sense than a power chair. I have used power chairs in the past when my shoulder was hurt and when my everyday chair was being repaired etc.

    I was sent to this rehab to try to get my spasms under control after a hospital stay because I was injured by my spasms. After trying and re-trying everything at the hospital including the Baclofen Challenge (same as the trial) I was sent to rehab where we tried one last drug and re-did Botox.

    My spasms still tip my wheelchair over (anti-tippers don't stop this) so it is unsafe for me to use it. My shoulders are pretty much worn out from the years of abuse (I'm a C6 complete) and all of this combined meant that after the OT and seating specialist went through every wheelchair option we could find a power wheelchair was the only option left.

    We did the measurements for it and talked about different options and everything was decided, but the OT saw a "possible issue" with my guide/service dog working next to a power wheelchair and not a manual wheelchair. I reassured her that it wouldn't be an issue, but she persisted.

    This has turned into me being stuck here with no rehab (PT, OT, RT etc.) for 144 days with absolutely no end date in sight. I spend my days laying in bed because the only other option is to sit in a wheelchair that doesn't fit properly that tilts and is too heavy for me to move at all next to my bed where I can't reach anything or use my bedside table.

    My guide/service dog is staying at my mom's and is not allowed in here (although that's illegal) until I can take care of him, but I can't do that until I get the wheelchair I need.

    Funding is a non-issue because the funding source is ready and waiting for the OT to call them to get a purchase order number. The wheelchair is waiting at the medical supply store that is pretty close to the rehab. It's been sitting there waiting since Oct. 3rd.

    The OT claims she "doesn't have the expertise" to work with someone who is blind and uses a guide dog or a wheelchair of any kind because she doesn't know anything about guide or service dogs or blindness or low vision or adding any kind of wheelchair to that mix. However she is the person who has the power to decide wether I am able to have the wheelchair she agreed that I need to have a life or wether I am just left to exist in a nursing home in a wheelchair I can't move or am sent home with 29 hrs a day of homecare (which they can't get) to exist there with someone having to push me around my apt. and having to retire my guide/service dog either way.

    How can someone who claims not to have the "expertise" know if something is unsafe like she claims it is?! I don;t even get the opportunity to show anyone what I am capable of so they can make a decision based on fact!

    She is claiming that it is "too dangerous" for me to leave my room in any type of wheelchair because I have a guide dog even though I have 29 yrs of experience of being blind, 11 yrs of experience of working with guide/service dogs and 7 yrs of experience of working with guide/service dogs and both power and manual wheelchairs. I have more experience than every other patient combined, yet they are allowed given a wheelchair as soon as they get here and are given free reign to go wherever they want in the building and on the property with no training what-so-ever and I am imprisoned in my bed and not allowed to have the equipment I need or my guide/service dog here because she says it's "too unsafe"...

    All of the guide dog schools that train guide dogs for blind people who use wheelchairs only use power wheelchairs because it is a lot safer than manual wheelchairs. All of the "expertise" they need is right here in the building. I have that expertise, but no one is listening to me.

    After 3 ethics committee meetings and contacting all levels of management here and every level of government nothing has changed. Eastern Health also conveniently has at least one lawyer at every major law firm so there is a conflict of interest and they can't do anything and when we finally found a lawyer who would do something he wanted a $10,000 retainer because they are known to use every dirty delay tactic they can so the people trying to actually get the healthcare they should be getting runs out of money before anything is settled and they don't have to worry about it.

    They didn't even care when we went to the media. The OT also says she is "not discriminating" because she is saying I can't have the equipment she said I need because I have a guide dog and NOT because I'm blind. (Um... I have my guide dog BECAUSE I'm blind...)

    Does this make ANY sense whatsoever to anyone else? Does anyone have any ideas on ways to get my life back? Leaving without the equipment I need is not an option because it is too unsafe and because it's "rehab seating" no one will sell us the wheelchair I need. Even if I bought a used wheelchair that fit it's not allowed into the building and if it was here the nurses are not allowed to get my up into it.

    Frustrated doesn't even come close to describing how I feel anymore!

  2. #2
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    I would go to the media and social media. Try to get some video of a blind person in a power chair and a guide dog on youtube. Get some video of training facilities teaching blind people and service dogs how to work together with a power chair on youtube as well. Start and conclude these videos with your story and an appeal for help. Can you leave if you get your own power chair?
    Don - Grad Student Emeritus
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  3. #3
    WildKat, do you have an advocate?

    I ask because I'm in the US VA system, in which a patient can reach out to an advocate who then looks over your case. Another term is ombudsman, which is a term more commonly used in educational circles. Either way, your advocate should be unrelated to you, but experienced in your type of needs.
    Last edited by chasmengr; 10-29-2011 at 06:08 PM.
    Chas
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    I am a person with mild/moderate hexaparesis (impaired movement in 4 limbs, head, & torso) caused by RRMS w/TM C7&T7 incomplete.

    "I know you think you understand what you thought I said, but what I don't think you realize is that what you heard is not what I meant."
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  4. #4
    Here is link that explains more about the VA's Advocacy program. I'm totally unfamiliar with Canada's healthcare system. I hope they have something like Advocacy.
    Chas
    TiLite TR3
    Dual-Axle TR3 with RioMobility DragonFly
    I am a person with mild/moderate hexaparesis (impaired movement in 4 limbs, head, & torso) caused by RRMS w/TM C7&T7 incomplete.

    "I know you think you understand what you thought I said, but what I don't think you realize is that what you heard is not what I meant."
    <
    UNKNOWN AUTHOR>

  5. #5
    Senior Member DaleB's Avatar
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    Maybe someone in the guide dog community could help advocate for you, or at least provide some backup for you and input for the OT?
    __________________

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  6. #6
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    Ok have you spoken to the nfb yet?

    Check out the blindrollers member's list

    Im a cane using hoh/low vision powerchair chick

  7. #7
    Senior Member lynnifer's Avatar
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    There is a drastic method for stopping the spasms that could solve all this, but it would involve slicing the spinal cord. Is that something you would be prepared to do? Would e-motion wheels help you in your manual?
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  8. #8
    If what you're describing is truly the full story, that facility is stupid. They're losing money by keeping you there.

    1) Find someone to adjust your manual wheelchair's center of gravity as far back as possible. It'll make it way less tippy.

    2) If you're already medically discharged, then leave. You're not a prisoner. Get your mom, a friend, or someone to help you. Go see another doctor, therapist, whoever. Get them to write a letter of medical necessity for the equipment you need, then deal w/ your funding source directly.

  9. #9
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    Quote Originally Posted by Donno View Post
    I would go to the media and social media. Try to get some video of a blind person in a power chair and a guide dog on youtube. Get some video of training facilities teaching blind people and service dogs how to work together with a power chair on youtube as well. Start and conclude these videos with your story and an appeal for help. Can you leave if you get your own power chair?
    We have already gone to the local media, but haven't really tried social media yet (besides having a facebook group). That's not a bad idea and I'll try to get out there more on the Internet.

    As far as how guide dogs and power wheelchair users work together I've found videos, news articles, pictures and even made a list of guide dog programs that are training with power wheelchairs. All of this was completely ignored by the rehab. In fact the OT has been speaking to different guide dog programs and she still won't even let me have a chance to show her or anyone else what I can do because she "doesn't have the expertise". Working with my guide/service dog is my responsibility and her job is to do exactly what she would for any other patient. It shouldn't matter if a person uses their vision, or their guide dog's vision and their other senses to get around. At the end of the day if both people got around obstacle safely, why should it matter how they did it?

    If I had my own power wheelchair I'm still stuck here for a bit. My apt. although it is accessible is in an area with no accessible transportation what-so-ever, so I still have to find a new place to live. I also need the other equipment and at least some homecare set up before I can safely leave here.

    The main issue is because I need rehab seating no suppliers will sell to us without an OT doing the order and the rehab won't let an OT from outside in to do that and I can't get out to go to them.

  10. #10
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    Quote Originally Posted by chasmengr View Post
    WildKat, do you have an advocate?

    I ask because I'm in the US VA system, in which a patient can reach out to an advocate who then looks over your case. Another term is ombudsman, which is a term more commonly used in educational circles. Either way, your advocate should be unrelated to you, but experienced in your type of needs.
    Quote Originally Posted by chasmengr View Post
    Here is link that explains more about the VA's Advocacy program. I'm totally unfamiliar with Canada's healthcare system. I hope they have something like Advocacy.
    The closest thing we seem to have here is the patient care coordinator. I've been working with her the whole time, but she can just suggest things and has no power to make them happen.

    I have contacted the patient advocacy group and they never did a thing (including calling me back) even after numerous phone calls and a push from a government dept.

    There is an ombudsman that deals with a lot of things including healthcare that I have found and will contact tomorrow. Thank you for the link, it did help me narrow things down and find another person to contact.

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