My mom is dying.

By Shawn Biggers of Gresham, Oregon. Shawn attends Portland Community College and is co-chair of the Multnomah Youth Commission.

My mom is dying. She currently has a temperature of 101 degrees Fahrenheit. Everyday, when I come home from school, I expect to find her dead.

She has asthma, diabetes, poor circulation, insomnia, she gets pneumonia most winters -- and, not surprisingly, she has clinical depression. None of these ailments are new, either. She's had them all for years.

Because of her chronic illnesses, she's legally disabled. She can't hold a job, because she gets sick too often. Ironically, she can't get health care when she doesn't have a job. The illogic is astounding:

- She's too sick to work.
- Because she can't work, she can't pay health care on her own.
- Because she doesn't work, the State tells her she doesn't qualify for health coverage.

She can barely take three steps without gasping. She has perpetual headaches. She spends her nights vomiting more often than not. Her eye glasses prescription is old, and she can't even enjoy reading. She cries miserably everyday, yet she receives no help.

My mother is disabled, and can't afford rent, food, or utilities -- so why is she told she makes too much money for prescription benefits? How is it that we live in the richest nation in the world, and cases like my mom's are allowed to exist?

THIS LETTER IS A CALL FOR HELP, ANSWERS, AND AWARENESS. I've already contacted every government department, insurance agency, and hospital. They have no answers, but perhaps you will.

If you have an answer (it better be good), please get back to me. Thank you.

Comments

  • auggie (unverified)
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    Have you tried contacting the Oregon Advocacy Center - www.oradvocacy.org - which works exclusively on issues relating to individuals with disabilities?

  • Liz Trojan (unverified)
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    Three words - Universal single-payer healthcare! You are right. The U.S. is the wealthiest nation on the face of this planet and the only industrialized nation that does not provide healthcare for it's citizen's. Why? One word - money. Here in the U.S. a third of every dollar spent on healthcare doesn't actually go for healthcare. It goes for administrative costs, marketing, advertising and shareholders. We outspend every other nation on healthcare and yet we get so little for our money. Our mortality rates are on par with third world nations such as Cuba. Insurance and drug companies are HUGE political donors. Their political influence makes for great profits but poor public policy. None of this does much to alleviate your mother's suffering but it is helpful to know the source of your mother's pain and suffering. Many groups have been pushing for universal healthcare plans. It's safe to say that with the current administration we will be lucky to hang on to existing social spending programs such as Social Security, Medicare, and Medicaid. Several states are working on constitutional amendments making healthcare a right. Others are working on "pay or play" initiatives requiring large employers to provide healthcare for their employees. Today 609,000 Oregonians are uninsured and that number increases each year. For the past couple years we've seen double digit increased in healthcare costs. At some point we may reach a tipping point but for the time being it appears that things will have to get worse before we decide to change our system of healthcare here in the U.S. Here is my favorite quote on the subject.

    "Of all the forms of inequity, injustice in healthcare is the most shocking and most inhumane." Martin Luther King, Jr. 1966

  • Steve Bucknum (unverified)
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    Shawn,

    I know your pain, having lost both parents and one grandparent to the slow death of cancer. It is not easy, in fact, it is the worst thing that can happen, perhaps except the death of a child.

    In your post you said some things that are beyond my understanding. Mind you, I spent 20 years in line and administrative levels of social service programs, including a couple years dealing with homeless populations. What I don't understand at the core is how your mother can't work, but has too much income. If she is unemployed and without income, she should be eligible for a host of services - although I know well how cutback they are under "compassionate conservatism" (compassion = die quicker?) If she has too many assets then she should liquidate them, that's how poor folk are forced to play the game. Perhaps you should inherit early - although there are limitations on that.

    You need an informed advocate. Disabled services, senior services, non-profits, etc. could help; but you say you have exhausted these resources. Really? Do you have power of attorney for you mom? Can you go look for services without her? Is there an underlying problem that makes your mom somehow unattractive to social services programs (drug use, prior fraud, agency burnout?). If there is something like that going on, you'll have to resolve it first, before you can get to the services you need.

    Shawn, you have a tough road ahead, and I wish I could offer you a sense of hope. But that is not to be. We live in the cruelest times in history - the "richest" nation that hates the poor. That neo-con's laugh at us "bleeding heart liberals" is just another level of hate in America.

    I think we all wish we could do something, but we don't have anything to offer, hence this is only the third response, and I doubt there will be many more.

    Hang in there.

  • (Show?)

    Having lost my own mother to cancer almost 8 years ago (can it really be that long ago? wow), I empathize. I'm sorry you are going through this. There's nothing that I can say to make it easier, so... :-(

    But I might be able to offer some help. Not much, but some - it all depends on her individual situation.

    If your mother is officially disabled and is receiving SSI Disability, she qualifies for Medicare. If she qualifies for Medicare - and if her income is low enough, she may be what's called a Qualified Medicare Beneficiary (QMB) and the state will pay her Medicare part B premium ($78.50). AFS should be able to help you out - they're not called AFS anymore, though, are they? Wherever one would get foodstamps and on the Oregon Health Plan - those folks, they can help with that part.

    There are a ton of variables, but if she's been disabled and on Medicare for a while but has part A and NOT part B, unfortunately the last day to remedy that was today - until the next Part B open enrollment next year (1/1 - 3/31). Of course with the expediency that state agencies work, it may take that long to get her QMB status approved. Once she signs up for Part B, she's in open enrollment for a Medicare Supplement or Medicare Advantage (HMO) plan for six months following the Part B effective date. Though I would never advise someone to sell their rights to Medicare to an HMO, if her income is so low that she can't afford a standardized supplement, something is better than nothing. Once all that is in place, she qualifies to get help from other agencies with her diabetic testing supplies (like Wilfred Brimley's Liberty Medical). She can probably even get one of those little scooters they advertise on TV.

    OK - now that's done - depending on which medications she takes, she may qualify to get her meds directly from the drug company at a discounted rate. My grandmother's income was too high for state/federal aid, but she was able to get her drugs directly through the companies for $20 copays. It takes a little work to get this stuff done, but... it's worth it when all ducks are properly in their rows. Unfortunately, insulin is not a drug so if she's insulin dependant, most diabetics are SOL on help with that. They can get help with the lancets, etc. etc. etc., though.

    Now, going back to whether or not she's on SSI Disability... if she's not yet on it (why not?), then she may qualify for assistance for insurance assistance through FEHAP - they pay 95% of insurance premiums for qualified low income folks. Now she's probably not insurable through anything BUT the Oregon Medical Insurance Pool (which has rates at 25% higher than average and has a 6 month pre-existing condition clause) - but considering where she's at, it's still cheaper to pay more for insurance than it is to pay the bills themselves. I don't have any contact info for FEHAP handy, but... I'll see if I can find something. I'm not too terribly familiar with it because I don't work with it at all, and I'm not even sure I have the acronym right, but it may be an avenue you could pursue.

    Whew. OK - got all that? hehe. If you have any questions about any of this, I'm actually an insurance agent who deals in Medicare issues allllllllllllll dayyyyyyyyy lonnnnnnnnng. E-mail me and I'll be happy to help. Once I know the exact situation, I can point you in the right direction(s). Free of charge, of course. :-)

  • Anne Dufay (unverified)
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    That was a good, comprehensive, response, cc. I wondered about the SSI -- it was the first thing that sprung to mind. Because of that I'm still wondering about some of the charges/questions in this post.

    Re the income limits on SSI. My sister is on SSI. (She has MS) She owns her house, and between SSI, a part-time job, and child-support payments has an income that keeps her head above water.

    And her quite substantial drug costs are paid (well, sort of, we can talk about the medicare prescription stuff another time) by medicare.

    The time she was having the most trouble with drug coverage was when she was too sick to work full time anymore, but was not yet "officially" qualified as disabled. There were a couple of bad years there, but she was lucky (or, I don't know, you could look at it in other ways -- most MS patients are made to wait much longer to qualify for disability. But, she was just sicker.)

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