Jump to content

Medical Care For Charity Cases


Recommended Posts

After being sick, off and on, for about six years I'm still trying to get a proper diagnosis. But my illness has left me as poor as the church mouse where I work part time as a custodian. My retirement and savings are long gone, and of course the church doesn't offer insurance, which I couldn't afford in any case.

My partner's Social Security is too high for me to get Medicaid, and I've given up on Social Security Disability after losing several appeals. I'm sick of begging for charity care from every doctor and hospital I go to - why do they always treat us like a bunch of lazy slackers?

Right now I'm trying to get a diagnosis from the UMass Medical School hospital in Worcester Mass, but I live in northern Maine, about 400 miles away. I've seen a neurologist once; she seems to believe there's something wrong besides "you need Therapy and another SSRI".

I was supposed to be there today but I cancelled the trip at the last minute. On Monday, the day before I was supposed to leave for Mass, somebody from the imaging place called and informed me I needed to make 'payment arrangements' with the billing department before they could take any pictures.

Nice to call at the last minute; the appointment was set up two weeks ago. I told them right from the start, over and over again, that I don't have any money, but I guess it just doesn't sink in.

Now that Mass. has their mandatory insurance deal, the hospitals are pretending their charity programs are gone. It's pretty clear they don't want poor people from out of state.

Two years ago I tried some specialist in Bangor Maine but all she told me was, "Yup, you're always tired and you have migraine attacks. Come back in three months and we'll see if you're still sick. Pain pills are evil, so no more pain pills for your migraines. And go talk to this therapist".

There must be a bunch of people on this board in the same situation. Have you managed to get proper care? How and where?

Thanks,

Jim

Littleton Maine

Link to post
Share on other sites

I don't know that I have any answers for you. It sounds like a tough problem. Have you tried calling your state's insurance assistance number (every state has one) and asking them for advice.

I don't understand your statement about your partner's Soc sec being too high for you to get Medicaid. Are you married?

If you are not married then I would think you would be considered "independent" and medicaid eligibility would be based only on YOUR income.

Aside from that, the only thing I know to tell you is to fight for SSDI so that you can get on Medicare.

Have you tried contacting the hospital social worker to see if they know of programs in your area?

Link to post
Share on other sites

Here's my 2 cents, which is all I have either. If I were in your shoes- I would switch jobs pronto. Being a custodian cannot be easy on your POTS. I work FT and if I were a custodian, I would also only be able to work part time. I would be miserable. I don't know how you are doing this!! If you got a desk job, you could work enough to get benefits, I bet. Right now, you are in a crisis and you need to do something differently. I bet you are going without meds too. Here are a few ideas if you want them:

1. Get a Patient Accounts Services job at the hospital. They generally hire this dept with no experience and if you are sane- you get the job. It is easy work, desk based and in a variety of shifts. Then, you would not only have coverage, but the coverage your hospital takes and they would be more willing to work with you because you are an employee.

2. Telemarketing. This is not what it used to be. Most jobs like this now are customer service lines for Nabisco, etc.

3. This is not a desk job, but I heard that you only have to work 21 hours per week to get full and free benefits= Starbucks. Plus, you'll get tips.

4. Colleges and Universities. There are scads of desk jobs and the benefits are usually top notch. They also hire with virtually no experience.

I would be happy to pimp out your resume for you (I'm a hiring manager for a hospital in Utah) and give you sheets of questions they'll likely ask at an interview. Just email me on the POTS email.

Bascially, that job is doing nothing for you. You don't need to work harder, you need now to work smarter. Plus, if you work a desk job you can probably go to work on days that you are feeling bad- because you can get through them.

Kits

Link to post
Share on other sites

Thanks to all for your kind words and suggestions.

No we're not married, we're registered as domestic partners (it's a Maine thing). For Medicaid in Maine (and for most other programs) I have to report household income. As meager as Social Security is, it is *still* over the threshold to get help from the state, although we did get one Food Stamp card for $20 - *that* sure bought a lot of groceries!

I took the job as church custodian because I can set my own hours. I can't work a job with regular hours because I'd be calling in sick all the time. I don't really like the job, but it does force me to get exercise so that I don't become deconditioned.

The suggestion to find a desk job is ironic - I used to earn a living as a computer programmer until I got too sick to do that kind of work on a regular basis. I still have a client that would like me to do more work when I'm able. My illness (whatever it is) affects my concentration and especially my short term memory during the migraine attacks. No concentration - no work gets done.

Calling the hospital social worker - yes, I will do that. Will they act as a case manager, someone to coordinate my schedule and deal with the horrible bureaucracy at these large institutions?

I can't even figure out how to get the neurologist's secretary to call me back so I can get her to return my records. I brought all my medical records with me, but had to leave them so they could copy them. The secretary was supposed to mail them back to me, but she only sent back a portion of them. To contact her, I have to call some useless 'neurology call center' and dictate a message to the operator, which then gets ignored. They won't even patch me to the secretary's voice mail.

Yes, SSDI / Medicare would be a huge help. After a bunch of phone calls and letters, Social Security sent me a CD of my disability claim file. I took it to a local disability lawyer. Even the lawyer turned me down. I guess in the USA, if you have two legs, two arms, and two eyes, you can work.

I do have some geographical challenges. I live in a town so small, there's no post office or police department. The nearest town of 30,000 (Bangor) is 135 miles from here. But don't even think about suggesting I move. I'll never leave my farm, except in a pine box!

Jim

Link to post
Share on other sites

Wait a minute.......I keep hearing this is the best health care system in world, we don't need to change a thing. It's an outrage this goes on in this country. Until the masses stand up and vote these corparate rats out of office it's only going to get worse.

Link to post
Share on other sites

Jim,

I hurt to read your story. I have recently been contacted by a woman in my area with the same problem. She was hospitalized for six months in the small county I live in and they could not help her. One neruo did suggest she might has pots, but there is no doctor here to dx. She does have medicaid and it is of no help to her, doctors here are not taking it. In fact the last time I talked with her no dr would refill her meds, so now she has to go cold turkey, which we all know is not good. I have been calling everywhere to try and get her some help but to no avail. All the places here in fl, Mayo and Cleveland won't take her on. Where is she to go? I can't believe in this country there are people who need expert medical attention and are being told no. I have been doing alot of the leg work for her because she just can't stand to face more rejection, one can only take so much, espcially when you are ill. I know it doesn't seem like much help, but I will be praying for you and all those who so desperately need medical attention.

Maggie

Link to post
Share on other sites

I'm guessing that you're not going to like this suggestion, but when all else fails....Could you change your status on your 'domestic partner' arrangement so that they would only take your earnings into account? That's one of the reasons I haven't married my long-term boyfriend - because they would count our incomes together and I wouldn't receive my benefits. We know we're committed, so not having the legal document is no big deal to us, but the long-term disability, federal disability and Medicare make a huge difference!

Also, I would guess that you would need a 'proper diagnosis' that could be documented by your doctor to receive federal disability. Hopefully a social worker at the hospital can help you find the right doctor to get you and accurate diagnosis and the appropriate meds. Don't give up hope yet! It took me over 2 years to get fed disability, and I had to go to court, but I won.

Best of luck to you,

Jana

Link to post
Share on other sites

Your story is heartbreaking. If you had a professional job, but can't do it due to your health, you SHOULD qualify for social security. Maybe you should talk to another lawyer. It's a long haul, but worth it. I don't know much about it, but others here have gone through the process and eventually gotten SS.

As for jobs, there are flexible ones that you can do online, part time from home - which might be easier for you and maybe even pay you more. Again, you can read through old posts and ask others here on the forum.

I was also thinking the same thing someone else posted about changing your domestic partnership status...or even moving to Massachusetts! :blink:

Link to post
Share on other sites

I live in New England, and I STRONGLY suggest you consider hospitals in ME or NH instead of MA. As you said, because massachusetts has health care reform, they no longer have a good system to deal with patients who have no health insurance and have limited income. They are trying to handle their in-state billing problems and they don't have the time or money right now to deal with out-of-staters.

I had really good luck at Dartmouth/Hitchcock hospital in Lebenon, NH. You might want to consider them. They were able to fully diagnose me and set me up with a reasonable treatment plan, too. I have health insurance, but I also have huge deductibles, and the hospital was willing both to give me a discount AND to set me up with a manageable payment plan.

However, with any hospital, you have to call a social worker or a financial adviser at the hospital FIRST - and fully explain your situation. The receptionist who makes your appointment can't help you, so don't even bother telling him or her that you can't pay.

Also, I know there are still some Catholic hospitals in NH and VT that are prepared to give charitable medical services. They might be a better bet than a regular private or state hospital. I would imagine there are some in ME, too.

Link to post
Share on other sites

Hi all,

Medicaid and other programs don't care about legal relationships or lack thereof. They just want to know what the household income and assets are. They are specifically designed this way because even bureaucrats know that some people live together without a license to avoid being liable for each other's financial troubles.

jump, I think you are correct that I am beating a dead horse trying to get help in Mass. I picked UMass in Worcester because I have friends who just moved from Maine to Mass ('cause there's so little work here) and because it's relatively easy for me to get there by bus. I have been thinking about the Dartmouth/Hitchcock hospital. When I was young I used to go backpacking in the White Mountains every weekend. Travel from here to northern NH is difficult; the only road is that horrible two-lane US 2 or drive all the way to Portland and then turn west.

It's a bit off-topic, but I have driven across huge expanses of the US where one sees nothing but empty landscapes and tiny towns that are very far apart. I guess they must have the same trouble getting medical care.

I can see now that I should have started with the social worker before making an appointment. I thought it was strange that I could get an appointment with a neuro at UMass on a week's notice with no doctor referal or any of that preliminary stuff.

I looked at the Mass 'Health Safety Net' website. They will cover homeless residents and undocumented residents (thank God for that!), but non-residents need not apply. A search on the UMass Medical Center website turned up an interesting newspaper article on how hospitals have cut their charity care expense in half since the new insurance regime took effect. Care to guess where that money is now going?

Link to post
Share on other sites

I've been unemployed for some time but have managed to hang on to my HSA. I chose high deductible insurance so it's not much help overall but does get me group discounts and covers me if a "standard" catastrophe occurs. Mine happens to be with Blue Shield/Cross which in many states is non-profit (though that makes almost no difference to cost and administration policy... like 3 to 5%). Not a big help for chronic stuff but offers some security, some discounting, and costs less than many peoples' cell phone bills! I might actually be better off with zero insurance, since then I'd be a clearer case! Like with welfare prior to reforms, it's tough to "bootstrap" out and reverse incentives abound... sometimes well intentioned offers are more of a trap than a help.

I can relate on the "mental focus" problems especially with computers because they're so "precise". I'm "on" some times and struggling badly at others. Can't be reliable so it's extra tough... especially if someone like a friend tries to help with an offer. Letting down a stranger is bad enough but a friend is worse. Explaining that is a pickle. I get a mild anxiety/phobia now, secondary to my POTS/CFS/whatever... because of the fallout from this dilemma. I'm trying to aim low and dig out of it. It's a chicken 'n' egg thing in a way.

I don't know much about alternate health care options (though I know one chap that volunteered for research as a means of funding expensive and non-standard treatment... clinicaltrials.gov ).

I bumped in to this thing here... it is focused on "assistance technologies" so it is not a good match for your case, but I think some of the same organizations & resources might still apply for you since their charter is wider. Who knows, if nothing else you could bump in to one such organization that would be understanding enough to hire you for computer work knowing your performance would be intermittent! Or some of these places might have some tips even if they can't directly help:

ABLEDATA

http://dinet.ipbhost.com/index.php?showtopic=13484

Link to post
Share on other sites

As recently as 1999 I actually had a 'regular' health insurance plan that cost about $400 /quarter, even as an independent contractor. Then almost all the insurance carriers left the state and I ended up with a useless $5000 deductible plan from Anthem that cost the same as my previous plan. Then I started having some health problems and I had to chose between paying the doctor/pharmacy or the useless insurance.

I've heard that in Maine the vast majority of high-deductible planholders never file a claim (and don't get much healthcare, either). At this point I think folks without much assets are probably better off with no insurance than with inadequate insurance. My partner has Medicare, and she spends a huge part of her monthly income to pay the 20% Medicare doesn't.

Fortunately Maine has pretty good laws to keep creditors from taking everything but the shirt on your back. For instance, if you have a modest home without a mortgage (as I do), it's probably safe. Creditors can't take tools you need to make a living, and stuff like that.

Link to post
Share on other sites

I think it is a miracle you were able to find a job you can do part time in such a small community.

I know many people who are able bodied who can't find a job right now, especially one with benefits. I personally could never do a job where I have to sit. Sitting brings on my POTS symptoms, just like standing. It is a blood pooling thing. Gives me migraines and makes me dizzier. Sitting might be the reason why you can't concentrate on computer work any more.

I think you should try again for SSDI. One problem with that is you don't qualify for medicare for two years after you get it.

The main problem I see with this for you, is you don't have a doctor and a diagnosis. But many attorney's will offer a free consultation and will work for the back payment you will get if they win. You could send your file to a bunch of them, even try some of those who advertise on TV. Maybe one will help you.

It is kind of a catch 22 when you work part time. SSDI may think that means you are able to work.

If you get a hospital to accept you for testing, you may be able to get those bills paid for by medicaid. If your medical bills are higher than your income, or some percentage, you may qualify for that month. So try to get all your medical testing done in one month. You could call your county MA department and ask them how it works. Also, ask them if they have any suggestions for health care.

You could also send a letter to your congress person. You are the poster child for why we need health care reform in this country.

Link to post
Share on other sites
Wait a minute.......I keep hearing this is the best health care system in world, we don't need to change a thing. It's an outrage this goes on in this country. Until the masses stand up and vote these corparate rats out of office it's only going to get worse.

Uh oh. Treading on dangerous territory there, Todd! <_<

Link to post
Share on other sites
You could also send a letter to your congress person. You are the poster child for why we need health care reform in this country.

Don't just send them a letter -- ask them for help! Every member of Congress employs constituent service representatives whose sole job is to help people navigate the federal bureaucracy and receive disability benefits. It's still a slog to qualify, but it's a lot easier with their help. They have better phone numbers than the general public, and know just who to call. My husband used to be one.

Amy

Link to post
Share on other sites

Not dangerous at all Amy, congress has to remember they represent the people, not the lobbiest that funnel millions to them from corporations. If we the people are feed up.........VOTE THEM OUT! Health care is not a privilege! Sorry I'm off my soap box now.

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...