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    What do people with upper level injuries (quads) do for care??

    What do people with upper level injuries (quads who need help getting dressed and transferring like me) do for care at home??

    Just curious what everyone does... I just had a good benefits advisement from a local independent living center. I have to change a lot b/c living at home (w/ my mother and her long-time fiance/partner) is leaving me depressed and feeling like "a burden"...plus they're getting older.

    Here are the basic options as I know them...

    If you're disabled and receive Medicare and Social Security (as I do) there is no asset or wealth test but you can't make much money at all...only $880 a month. The problem is if you have a disability and need personal care assistance Social Security won't contribute. Your left paying out of pocket or relying on family.

    For Medicaid...though each state's rules vary, in New York if you're disabled and qualify you can have up to $20,000 in assets (money, stocks, etc.) while receiving benefits. The biggest benefit if you're a 'dual eligible' meaning you get both Medicare & Medicaid is your assistance needs like getting dressed and out of bed will be met. There's also a good Medicaid buy-in program where qualifying people with disabilities who work can make up to about $40,000 a year while getting benefits.

    There's people have money and are able to pay for care out-of-pocket...or there's lots of us who get assistance everyday from a spouse, parent, girlfriend/boyfriend or friend.

    ----
    C4/5, 17 years post injury, power chair user, not married but dating.
    40
    I get Medicaid, don't work and have paid help coming to the house.
    30.00%
    12
    I get Medicaid, work, have helpers coming to the house.
    5.00%
    2
    I work, pay out of pocket for help and have help from family/spouse.
    25.00%
    10
    Don't work, have Social Security Disability and get help from family/spouse.
    35.00%
    14
    I'm rich!
    5.00%
    2
    C4/5 incomplete, 17 years since injury

    "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

    "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

    #2
    I'm like you...Quad C4-5 about 5 years post injury.
    Always worked and always paid out of pocket because had money aside that are almost finish, and don't know what to do...in the near future.
    I make net about 35 but gross about 100, so i've been told I can't get medicaid/madicare/ss...
    Also I'm married with kids and the only one working, so i must pay 2k month of health insurance.
    I would gladly talk with someone for advise as I'm going broke!
    -----------------------------------------
    My new life started about five years ago.
    C4-5 incomplete

    Comment


      #3
      I work, pay out of pocket for live-out attendents, and have no help from family or friends. You do not have this option.

      Comment


        #4
        issues with home health care

        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.

        Comment


          #5
          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.
          Why do you need that many hours of help a day? I'm a lower quad/high para and am independent so don't know your needs, but that seems like a lot. What are your needs? In/out bed. Shower. Bathroom. Can you just manage with help for a bit in the am/pm?
          Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash

          Comment


            #6
            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.
            Originally posted by november View Post
            Why do you need that many hours of help a day? I'm a lower quad/high para and am independent so don't know your needs, but that seems like a lot. What are your needs? In/out bed. Shower. Bathroom. Can you just manage with help for a bit in the am/pm?
            I agree, why at C5/6 do you need 24/7 attendants? I know not all injuries are the same, but I too am a C5/6 and get 3 hours a day (2 in the morning, 1 at night) and manage on my own during the day and sleep at night. Are you on Medicaid? Who told you you will "be forced to live in a nursing home"? You are 27 years old, a nursing home should not even be considered! Ask whoever told you that if they are familiar with the Olmstead decision.
            http://about.me/joshuawinkler

            Comment


              #7
              Originally posted by KyleP2112 View Post
              What do people with upper level injuries (quads who need help getting dressed and transferring like me) do for care at home??

              Just curious what everyone does... I just had a good benefits advisement from a local independent living center. I have to change a lot b/c living at home (w/ my mother and her long-time fiance/partner) is leaving me depressed and feeling like "a burden"...plus they're getting older.

              Here are the basic options as I know them...

              If you're disabled and receive Medicare and Social Security (as I do) there is no asset or wealth test but you can't make much money at all...only $880 a month. The problem is if you have a disability and need personal care assistance Social Security won't contribute. Your left paying out of pocket or relying on family.

              For Medicaid...though each state's rules vary, in New York if you're disabled and qualify you can have up to $20,000 in assets (money, stocks, etc.) while receiving benefits. The biggest benefit if you're a 'dual eligible' meaning you get both Medicare & Medicaid is your assistance needs like getting dressed and out of bed will be met. There's also a good Medicaid buy-in program where qualifying people with disabilities who work can make up to about $40,000 a year while getting benefits.

              There's people have money and are able to pay for care out-of-pocket...or there's lots of us who get assistance everyday from a spouse, parent, girlfriend/boyfriend or friend.

              ----
              C4/5, 17 years post injury, power chair user, not married but dating.
              You seem to have a good grasp of your options, you need to figure out what works best for you. I have lived on SSI, used a PASS (currently using a PASS to remain Medicaid eligible), used 1619(b), and hope to use Colorado's Medicaid buy-in next year.

              A couple questions. Are you on SSDI only, no SSI? Are you working or considering working? Do you mean the NY Medicaid asset limit is $2,000? Is Medicare contributing to your home care, most home care falls to Medicaid not Medicare?

              Be ready for bumps in the road, but the feeling of independence is worth the effort!
              http://about.me/joshuawinkler

              Comment


                #8
                I saw this article in th NYTimes called "The Disability Trap" that I thought those of us on SSI (Social Security Supplemental Income). The guy profiled in the article didn't have a spinal cord injury but the issues apply to all of us who have.

                The New York Times, October 20, 2012
                The Disability Trap
                By JULIE TURKEWITZ and JULIET LINDERMAN

                BRAD CRELIA was rushing around the vast media room at an international AIDS conference last summer in Washington, interviewing people for a series of articles on Hivster.com, a Web magazine he founded for people who are H.I.V. positive. The ease with which he moved through the crowd made it clear he’d done this kind of political networking before: he’d worked first as a field organizer for Hillary Rodham Clinton and later as a regional field organizer for President Obama.

                But Mr. Crelia, 27, nearly didn’t make it home from the AIDS conference; without the $17 necessary to buy a bus ticket, he’d had to beg a stranger for a ride back to New York. It was the end of the month, he said. He’d simply run out of money.

                He is one of more than 8.7 million disabled Americans who rely on cash assistance from the government through a program called Supplemental Security Income. The program was created in 1974 to help blind, aged and disabled people meet basic needs for food, clothing and shelter. By 2035, the federal government expects to spend $60.9 billion in payments to 9.9 million people.

                Discussion of Medicare, Medicaid and Social Security programs has been at the forefront of election-year debate. But there has been no discussion of S.S.I. The fact is that expenditures for the S.S.I. program are rising while the economic status of disabled people is on the decline.

                The very program that is supposed to be their safety net is actually the source of the problem, experts say. S.S.I. traps many disabled people by limiting their income to levels just above the poverty line, and taking away their cash benefits if they achieve any level of security.

                At 16, Mr. Crelia was given a diagnosis of porphyria, an incurable hereditary blood disorder. His symptoms — seizures, paralysis, blackouts, nausea and extreme pain — became more and more severe, preventing him from finishing college and landing him in the hospital for days or weeks at a time. In addition, in 2009, he learned he had H.I.V. That has not affected his ability to work. But his porphyria has made maintaining a traditional full-time job nearly impossible.

                So he and others like him need a flexible financial safety net for the periods during which they cannot work. But no such program exists. The only way for Mr. Crelia to qualify for cash assistance was to sign up for S.S.I. — and demonstrate that he was unable to “engage in substantial gainful activity” because of his physical impairment.

                He now receives a monthly check for $506 through the S.S.I. program, and he is allowed to earn $85 more. (He also receives some assistance toward his rent and food expenses.) Once he surpasses the $85, his benefit check will be reduced by $1 for every $2 he earns. And if his income reaches $1,097 a month, he will no longer be eligible for any cash S.S.I. benefits at all. So he must be poor or he must give up all government support. Mr. Crelia is never permitted to have more than $2,000 in the bank, a restriction that places the trappings of a middle-class life — a car, a modest home, a family — far out of reach.

                “I’ve been kept financially sort of in this cage,” Mr. Crelia said. “Just basic things that people rely upon, having a normal life, aren’t things that are really accessible. And won’t be.”

                People like Mr. Crelia — ill, but ambitious, motivated and able to work the majority of the time — don’t fit into a rigid system set up primarily to provide support for those who will never be able to enter the workplace in any capacity. Instead of accounting for a spectrum of ability and administering a benefits package accordingly, the system offers a one-size-fits-all plan: you can either work and not qualify for financial assistance, or you’re sick, and barred from earning any substantial income.

                “Instead of helping people achieve their full potential,” David Stapleton, who directs the Mathematica Center for Studying Disability Policy, testified before Congress last month, “the current disability support system has created a poverty trap.” The employment rate for people with disabilities, he said, is just 21 percent of the rate for people without disabilities, down from 32 percent in 1981. The problems stem from the Social Security Administration’s failure in 1974 to structure a program that motivates work. It is relatively easy to accept cash benefits but very hard to get into the workplace. Mr. Stapleton said that Congress had the power to push to change the structure of the program, but that it had not done so.

                Today, 70 percent of people with disabilities live in poverty. The Affordable Care Act may eventually ease the burden for some individuals with disabilities, namely those who rely on Medicaid through the S.S.I. program, by eliminating exclusions based on pre-existing conditions and annual or lifetime benefits caps. But the impact on the disabled is not yet clear, and experts are calling for additional targeted reforms.

                Richard Burkhauser, a professor at Cornell, and Mary Daly, a government economist, have studied the welfare of people with disabilities for more than three decades, and offer some solutions. They suggest a work-first approach that would help people get job training or employment before they go through the red-tape-ridden path of getting on S.S.I. Now people must go through the lengthy process of proving that they cannot work before they are given access to job training and other programs.

                Instead of enrolling Mr. Crelia in S.S.I., the Social Security Administration could have helped him apply for a loan to finish his bachelor’s degree, increasing his chances of finding a flexible, high-paying job with health insurance.

                Mr. Burkhauser and Ms. Daly borrow another idea from the lessons learned from the 1996 welfare overhaul. Welfare moved from a federal program that did not encourage single mothers to work to a state-run program that offered the incentive of an earned-income tax credit for working mothers. They say S.S.I. should copy this model by allowing people like Mr. Crelia to hold a paying job as often as possible — whether for 20, 25 or 30 hours a week — and having the federal or state government chip in with tax credits to round out his income.

                For now, Mr. Crelia is doing his best to stay busy. He clocks far more than 40 hours most weeks, mostly in unpaid writing. “When I work, I thrive both physically and emotionally,” Mr. Crelia said. “When I am not sick and can control my disease with medication — like now — I want to be able to contribute to society, have a family, grow my business. But not as a volunteer; I want to be paid like everyone else.”

                Freelance journalists who have contributed to The New York Times.
                C4/5 incomplete, 17 years since injury

                "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

                "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

                Comment


                  #9
                  I'm in the same position as you, C-5/6 kind of in the state pays for my help. I get roughly 5 a half hours a day and they base it on how much function you have. I kind of live alone, in the guesthouse on my parents property, but mostly get my own help. You should look into state-funded programs to help you find some care
                  C-5/6, 7-9-2000
                  Scottsdale, AZ

                  Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

                  Comment


                    #10
                    have you tried being more ind. if you funct at c6 its certainly possible to be ind.
                    Bike-on.com rep
                    John@bike-on.com
                    c4/5 inc funtioning c6. 28 yrs post.
                    sponsored handcycle racer

                    Comment


                      #11
                      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.

                      Comment


                        #12
                        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
                        By ROBERT PEAR

                        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.
                        C4/5 incomplete, 17 years since injury

                        "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

                        "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

                        Comment


                          #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!
                          http://about.me/joshuawinkler

                          Comment


                            #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!!!

                            Comment


                              #15
                              reply

                              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.

                              Comment

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