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. #1
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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.

  2. #2
    Member gigio's Avatar
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    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

  3. #3
    Senior Member NWC4's Avatar
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    I work, pay out of pocket for live-out attendents, and have no help from family or friends. You do not have this option.

  4. #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.

  5. #5
    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.
    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

  6. #6
    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.
    Quote 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.

  7. #7
    Quote 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!

  8. #8
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    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.

  9. #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.

  10. #10
    have you tried being more ind. if you funct at c6 its certainly possible to be ind.

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