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Thread: How do I find a DME?

  1. #1

    How do I find a DME?

    How do I find a DME?

    I have Hereditary Spastic Paraplegia. It's been coming on slowly for about 25 years. I've been a full time wheelchair user for over two years now. Because it's a slowly degenerative disease, it's not a sudden, like an SCI. So I haven't had any help. I've never been in the hospital for it. My neurologist diagnosed me almost a year ago (after a year of office visits!) and then just sent me home. He's no help at all. He didn't even explain my disease to me, just told me to look it up on the internet. Then again, there's not much point getting a new neurologist -- he's my second one. Most neurologists have never even heard of my disease, it's very rare. It appears that my dr. is the only one in Austin who even knows what HSP is.

    Anyway, I've bought two manual wheelchairs for myself, by myself, from Spinlife.com, out of pocket. My disease is progressing further up my spine and is now weakening my arms. I'm at the point where I can't push my own wheelchair over any terrain, any carpet, medium or long distances, or any kind of slope. I'm definitely losing my independence. I'd like to get some e-motion wheels -- however, the e-motion people want to work with my DME dealer.

    How do I find a DME dealer? I live in Austin, TX. Do I have to go to my neurologist first, for a reference, or can I go straight to one? Any recommendations?

    Also, will I need a letter from my neurologist for the insurance, or just a letter from the DME? I've never used insurance to buy anything so I have no idea what the procedures are.

    Thanks so much for the help. I feel like I've been thrown into the spinal cord injury/disease world only without any doctors or support groups or anything!

  2. #2
    Actually, it's starting to look like I have Hereditary Spastic Quadriplegia, and not Paraplegia.

  3. #3
    Also, does normal insurance cover wheelchair parts? All the websites make it look like everyone has Medicare. I don't have Medicare, I'm only 36 years old.

    Please help.

  4. #4
    Brooke, are you working? Do you have private insurance or are you on Medicaid? Most people with disabilities who are unable to work and are on SSI or SSDI are also on Medicare (you can qualify after 24 months of being on SSDI), regardless of age.

    Medicare requires that if you are getting power mobility that you have an evaluation for chair needs by a RESNA certified therapist, not just a DME. These are usually PTs or OTs. Your physician may be able to refer you to someone who does this, or contact the local large rehabilitation center to see if they offer this service. They also will work with specific DME companies or wheelchair reps.

    The therapist will write the letter of medical justification that your physician must sign to get Medicare to authorize the purchase. Medicare may disallow specific features of the chair even if they authorize the chair itself, so often there is a significant private pay component. If you have Medicaid, they may pay for part of the chair as well.

    If you have private insurance, many companies changing their procedures to mimic those of Medicare, so it would be important to find this out before attempting to just get a chair from a DME.

    Keep in mind that most DMEs are not trained therapists nor do they have any special expertise in matching your disabilities with the right chair. They are sales people, and some only want to sell you the product that will make them the most profit.

    (KLD)

  5. #5
    Thanks for all that advice. The good news is that I don't need a chair -- mine is only 2 years old and it works fine, I'm just looking into power wheels.

    Yes, I have private insurance. United, through my husband's job. We haven't asked for anything so far from insurance, or from the government. Neither group even knows I'm disabled. Also, in our state you can get out of property taxes if you get SSDI, but I can't qualify for that huge exemption, because I don't get SSDI.

    I briefly looked into SSDI a few years ago on the internet, and, if I read it right, it was based on how much you worked in the 10 prior years. However, I had been a mother, and unemployed for exactly 10 years and a few months when I read that. I was highly employed before that, of course, but now I'm a stay at home mother of two great boys. My job is homeschooling them. But I haven't had an income-generating job in almost 11 years now, because I've been home with them.

    Correct me if I'm wrong, but doesn't that mean, since I wasn't employed in the last 10 years, that I don't qualify? Except, now that I think of it, wouldn't that mean that anyone who breaks their necks as a teenager also wouldn't qualify. And I know there are a lot of people who broke their necks as teenagers. Do they get Medicare? And how?

    If I could've had monetary help all this time (I've spent over $9k so far on chairs, lifts, etc.) -- then I'm really mad at my doctor for not telling me that!

    Also, I keep seeing videos of support groups for people like me, but I think they're held at hospitals or something, because I can't find them. I originally hoped my doctor would direct me to one when I was diagnosed. I also want to know if they're for spinal cord injured only, and not spinal cord diseased. I have the same effects, but I just didn't get in a car accident. I wonder, even if I found such a group, would I be unwelcome?

    Ok, so you're saying I need a therapist -- and my doctor should be able to refer me to one.

    Except now I'm wondering if I need a new doctor, since this is yet more information he didn't tell me.

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