View Poll Results: What do people with upper level injuries (quads) do for care??

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  • I get Medicaid, don't work and have paid help coming to the house.

    12 30.00%
  • I get Medicaid, work, have helpers coming to the house.

    2 5.00%
  • I work, pay out of pocket for help and have help from family/spouse.

    10 25.00%
  • Don't work, have Social Security Disability and get help from family/spouse.

    14 35.00%
  • I'm rich!

    2 5.00%
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Thread: What do people with upper level injuries (quads) do for care??

  1. #11
    Quote Originally Posted by epredum View Post
    i need to know my options....
    i'm 27, c5/6 and 5 yrs post injury. i have a 9yro and 3 yro boys. i get $850/month ss and about $300 child support. i live in my house w/ my boyfriend and get 10 hrs/day of home health aides.
    i was just told that if i break up with my bf and i'm living by myself then i'll be forced to live in a nursing home b4 being able to receive round the clock home health. so, now i feel like i need to stay w/ him or else and that's extremely unfair...considering i want to break up and live on my own with my boys.
    the rules that control my life are starting to overwhelm and smother me to no end. my home health company doesn't allow me to leave anywhere with my aides. i'm expected to use public transport, even though i have my own vehicle.
    i'm 27 with 2 boys, healthy as can be and on ZERO meds but i'm being treated totally different.

    Please consider contacting one of the Independent Living centers in your state and discuss your options. Someone is misinforming you.

  2. #12
    Senior Member
    Join Date
    Jun 2008
    Look at this article... This change in Medicare rules by the Obama Admin. is big for people with higher level spinal cord injuries needing care (who also have Medicare. In my situation, my mother is getting older and at some point won't be able to help me w/ everything...esp transfers. Maybe I'll meet some hot chica on a dating site... ;-)

    The New York Times, October 22, 2012
    Settlement Eases Rules for Some Medicare Patients

    WASHINGTON — Tens of thousands of people with chronic conditions and disabilities may find it easier to qualify for Medicare coverage of potentially costly home health care, skilled nursing home stays and outpatient therapy under policy changes planned by the Obama administration.

    In a proposed settlement of a nationwide class-action lawsuit, the administration has agreed to scrap a decades-old practice that required many beneficiaries to show a likelihood of medical or functional improvement before Medicare would pay for skilled nursing and therapy services.

    Under the agreement, which amounts to a significant change in Medicare coverage rules, Medicare will pay for such services if they are needed to “maintain the patient’s current condition or prevent or slow further deterioration,” regardless of whether the patient’s condition is expected to improve.

    Federal officials agreed to rewrite the Medicare manual to make clear that Medicare coverage of nursing and therapy services “does not turn on the presence or absence of an individual’s potential for improvement,” but is based on the beneficiary’s need for skilled care.

    Judith A. Stein, director of the nonprofit Center for Medicare Advocacy and a lawyer for the beneficiaries, said the proposed settlement could help people with chronic conditions like Alzheimer’s disease, multiple sclerosis, Parkinson’s disease, stroke, spinal cord injuries and traumatic brain injury. It could also provide relief for families and caregivers who often find themselves stretched financially and personally by the need to provide care.

    “As the population ages and people live longer with chronic and long-term conditions,” Ms. Stein said, “the government’s insistence on evidence of medical improvement threatened an ever-increasing number of older and disabled people.”

    In many cases, she said, the denial of coverage led to a denial of care because most people cannot afford to pay for these services on their own.

    Neither she nor Medicare officials could say how much the settlement might cost the government, but the price of expanding such coverage could be substantial.

    Dr. Lynn Gerber, director of the Center for Study of Chronic Illness and Disability at George Mason University in Virginia, called the settlement “a landmark decision for Medicare recipients with chronic illness and especially those with disability.”

    “Disability frequently accompanies many chronic conditions,” Dr. Gerber said, “and we often have no cures, so people are likely to experience progressive disability. Rehabilitation, physical and occupational therapy and skilled care are incredibly important in maintaining a person’s functional ability, performance and quality of life.”

    The lead plaintiff, Glenda R. Jimmo, 76, of Bristol, Vt., has been blind since childhood. Her right leg was amputated below the knee because of blood circulation problems related to diabetes, and she is in a wheelchair. She received visits from nurses and home health aides who provided wound care and other treatment, but Medicare denied coverage for those services, saying her condition was unlikely to improve.

    Another plaintiff, Rosalie J. Berkowitz, 81, of Stamford, Conn., has multiple sclerosis, but Medicare denied coverage for home health visits and physical therapy, on the ground that her condition was not improving. Her family said she would have to go into a nursing home if Medicare did not cover the services.

    The proposed settlement, negotiated with lawyers from the Justice Department and the Department of Health and Human Services, was submitted last week to Christina C. Reiss, the chief judge of the Federal District Court in Vermont. If she approves it, as expected, she would have authority to enforce it for up to four years.

    Asked about the proposed settlement, Robert D. Reischauer, a public trustee of the Medicare program, said: “Unquestionably that would increase costs. How much, I can’t say.” Other independent experts expressed similar views.

    While the settlement is likely to generate additional costs for the government, it might save some money too. For example, physical therapy and home health care might allow some people to avoid more expensive care in hospitals and nursing homes.

    Charles S. Miller, a Justice Department spokesman, and Erin Shields Britt, a spokeswoman for the Health and Human Services Department, said government lawyers had no comment.

    The changes will apply to the traditional Medicare program and to private Medicare Advantage plans. They apply to people 65 and older, as well as to people under 65 who qualify for Medicare because of disabilities.

    The Obama administration initially urged the judge to dismiss the lawsuit. Medicare officials denied that they had a formal policy requiring beneficiaries to show their conditions would improve.

    However, in a separate lawsuit in Pennsylvania, Medicare officials argued the reverse. In order for Medicare to cover skilled nursing care, they said in a legal brief, “there must be an expectation that the beneficiary’s condition will improve materially in a reasonable and generally predictable period of time.”

    The same standard, in nearly identical language, is found in guidelines used by some Medicare contractors, which review and pay claims on behalf of the government. In a typical case, Medicare terminated coverage of skilled nursing care and physical therapy for an 81-year-old woman because she had “exhibited a decline in functional status.”

    Under the settlement, the federal court in Vermont will certify a nationwide class of more than 10,000 Medicare beneficiaries whose claims for skilled nursing and therapy services were denied before Jan. 18, 2011, when the lawsuit was filed. Many of them will have an opportunity to have their claims re-examined under the revised standards.

    Plaintiffs in the case include the National Multiple Sclerosis Society, the Parkinson’s Action Network, Paralyzed Veterans of America and the National Committee to Preserve Social Security and Medicare, an advocacy group.

    Neither the Medicare law nor regulations require beneficiaries to show a likelihood of improvement. But some provisions of the Medicare manual and guidelines used by Medicare contractors establish more restrictive standards, which suggest coverage should be denied or terminated if a patient reaches a plateau or is not improving or is stable. In most cases, the contractors’ decisions denying coverage become the final decisions of the federal government.

  3. #13
    Interesting article Kyle. The initial concern I have is that this decision is around "skilled care", much of the care needed by those with permanent disabilities fall under "un-skilled" care and therefore appear to still be excluded. We are in the middle of some substantial discussions around Personal Care (un-skilled) in Colorado, our Medicaid program only provides these services in waivers and coverage varies between waivers.

    Medicaid continues to provide a much greater level of long-term care, in most states at least, than Medicare. Both programs need improved, but I think we are starting down the right path!

  4. #14
    I have a combination of paid outside help and my mother-in-law lives with us now. She's been just amazing helping around the house and with my kids. Then the caregivers help with my business. Takes a huge amount of stress of her shoulders. Thanks MOM!!!

  5. #15


    I'm 34 c3 quad, vent free, living in a nursing home. hate it but have no other choice. get medicaid and that is it. sucks that higher individuals don't get other options.

  6. #16
    Quote Originally Posted by bert View Post
    I'm 34 c3 quad, vent free, living in a nursing home. hate it but have no other choice. get medicaid and that is it. sucks that higher individuals don't get other options.
    What state are you in? If you are on Medicaid you should have the choice to live in the community, the Supreme Court said so in their 1999 Olmstead decision.

  7. #17
    My wife C5/6 (chest down) works 4 days a week. We get our benefits from her job at the hospital. We get NOTHING in assistance and pay for all her care out of pocket. I work full time.

  8. #18
    Senior Member Cowboys_Place's Avatar
    Join Date
    Dec 2005
    Northern California
    C 4/5 Don't work get SSD and a some money from a workmans comp settlement but not enough to pay for care and live on so the burden of taking care of me falls onto my 76 year old mother.. It stresses me out add that to problems with pain and there are mornings I wish I didn't wake up!!
    Courage is being scared to death but saddling up anyway. .(John Wayne)

  9. #19
    Senior Member
    Join Date
    Sep 2001
    middle georgia
    c6c7 61yrs work ssdi too pay my care giver 6 hrs a week. i am getting to point where getting out of bed in am is so hard so stiff it takes 5 to 10 minutes just to get up and put shoes on

  10. #20
    Senior Member Tim C.'s Avatar
    Join Date
    Oct 2002
    New Jersey
    Blog Entries

    I can't work, and have to pay out of pocket.

    I'm screwed, I would lose disability even if I could work, or did Medicaid. I must pay thousands each month. I'm sure not wealthy. Need to add category.

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