1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
Mark Berry continues his series of articles on the 9th Invest in ME International ME Conference in London, with the emphasis shifting from autoimmunity to pathogens and the gut ...
Discuss the article on the Forums.

End of the Line

Discussion in 'Finances, Work, and Disability' started by jimells, Aug 17, 2011.

  1. jimells

    jimells Senior Member

    Messages:
    377
    Likes:
    481
    northern Maine
    Valentijn, you got it right. Maine has very good laws protecting people from unsecured creditors, not like, say, Texas. They can't take your farming equipment, tools of your trade, or your house if it's worth less than $47,000 and you actually live there. There's a 'homestead exemption' law that reduces the taxable value of the property. Of course, how many residences are worth less than $47,000, outside of Detroit? Mine is right on the edge, and since I only own half of the trailer house, that helps some.

    Last week I saw a therapist from the case management agency. She tried to assure me that if I became homeless I could apply for subsized housing, and being homeless would put me higher on the waiting list. She didn't mention how long is the waiting list. I'm sure it's years and years. There are no homeless shelters for men north of Bangor - just the bush, if one can find a place where one won't be driven out by the cops. And I'm too old and sick and too far north to live in the bush. I lived on the road for almost a year when I was young, healthy, and strong, when it was easy to hitch hike, or work at Manpower for a few days, or find an empty couch. Those days are long gone, for me personally, and for all the young people now leaving home.

    kurt, I have a question about the SSDI review process. Don't they have to show there has been improvement in order to kick you off? The State of Maine is trying to kick me off Medicaid, but their own policy manual clearly states that DHHS has to prove I am no longer impaired enough to qualify for benefits, as stated in Social Security regulations. Check out 20 CFR 416.994(b):

    "... We must determine if there has been any medical improvement in your impairment(s) and, if so, whether this medical improvement is related to your ability to work. ... If medical improvement related to your ability to work has not occurred and no exception applies, your benefits will continue... we must also show that you are currently able to engage in substantial gainful activity before we can find that you are no longer disabled."

    This looks to me like the burden of proof is on them to produce medical evidence that you are no longer impaired. No medical evidence, then pass Go and collect $200!

    jenbooks, those are good thoughts. Thankyou.

    markmc, I think the case management agency will help me navigate the benefits maze. It's so fragmented and chaotic, it's hard to imagine a more irrational and dysfunctional system even if it was designed that way. The social workers at the state "Integrated Access" office were no help. They told me to go to the Salvation Army. It seems state social workers have to get a masters degree so they can enter all your info into a computer. They have no authority to make decisions of any kind. All decisions are made by the computer or the big shots in Augusta. The social workers apparently have no knowledge of any programs, public or private, outside of food stamps, TANF, and Medicaid. Kinda sad, actually, that they are forced to be so limited. I expect most of them would like to help, if they were allowed to.

    Roommates - uggh! I could rent a room, if I could find the right person. And they'd have to be nice to my birds. I've had very poor experiences with roommates in the past.

    I did recover the church letter from the trash. I do need to send a copy to my useless disability lawyer. It seems to me that a letter stating my job performance is unsatifactory could just as easily be used to against me, proof that I'm a welfare bum who refuses to 'pull their own weight'.

    aprilk, sometimes I put a can of tuna on my salad, and about once a week I cook brown rice and add frozen vegetables and a can of shrimp to the pot. It's easy and tastes OK. I also eat a lot of yogurt, eggs, cheese. My gut seems to like those items. Today I got a blood test for B12 and Vitamin D, so I will be watching for the results of those tests.

    I have some good news to close with. The Salvation Army dug deep into their pockets, and said they can buy me 50 gals of fuel oil. As usual in the U.S., it's poor working people helping each other while getting kicked in the head by the overlords: the money will come from the local Army thrift store.

    Thanks for all your support.
  2. alice1

    alice1 Senior Member

    Messages:
    457
    Likes:
    0
    Toronto
    You have an amazing spirit jimells!
  3. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    3,986
    Likes:
    829
    Concord, NH
    Have you heard of Low Dose Naltrexone(LDN)? Some people have good results with this, and it is cheap if you buy it on the internet from a foreign country.

    GG

    PS Hope you get more help and keep your chin up. I used to live in Northern NH, not as rural as Northern, ME, but it's still rugged country!
  4. Mary Poppins

    Mary Poppins PJ Princess

    Messages:
    316
    Likes:
    68
    Get thee to a State funded social worker, pronto. Have them navigate the system for you - its part of their role. You may be eligible for some crisis assistance that only peeps 'in the know' can access.

    Advocacy on your behalf is also part of their role. A financial counselling service referral may come in handy also.

    Dunno if this is right as I'm trying to find services in an unfamiliar location, but http://www.socialwelfareservices.org/Maine/

    Here is the National Association of Social Workers branch in Maine. http://www.naswmaine.org/ Give them a call and ask them to point you in the right direction for a funded social work program.

    good luck- there's always a way, you just gotta know how to find it.

    PS. The therapist you saw from the case management program - what were their qualifications? They gave you an interesting response.

    A Social Worker must be qualified with both a Bachelor and Masters Degree in the US (as far as I'm aware). Many people will say they are a 'Social Worker' when really they've just completed a part time, 6 week long Youth Issues course at the local community centre.

    A hint: when you come across a person who says they're a Social Worker, ask them two things. 1) Are you accredited with the NASW? 2) What theoretical base do you work from?

    If they stumble on either question, they're either lying. Or a fool. Probably both. :D

    Oh, and don't be lulled into thinking that all SWs have your best interests at heart and are kindly souls. Some are an absolute ineffectual joke and couldn't find their way out of a paper bag, let alone navigate tricky service protocols and eligibility policies. That said, some are absolute guns who can be smiling allies/assassins to the right people, and will fight their way through hoops in the pursuit of social justice. You're facing the most elementary need at the moment, and frankly, anyone who turns you away, is displaying professional ineptness and breaching Codes of Ethics and Practice.

    Hopefully some decent human service delivery comes your way very soon, hun. If you seriously luck out with the NASW etc, we'll workshop some more ideas. Take care xo
    ahimsa likes this.
  5. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Carrigon,

    I struggled with proving the same types of things with a condition other than CFS/ME, so I do think there are other diseases besides CFS/Me that are treated this way for disability benefits. However I can very much relate to the frustration with it. I felt the same way, that they basically wanted you one step from death in order to prove disability. I thought disability meant unable to maintain a job because of health issues not that it meant you shouldn't do even the very little that you're able to do here and there because then it will look like you are fine and not disabled! Disability benefits are about inability to work and support yourself because of sickness. It doesn't mean you can't do anything at all. Of course some are sick enough that they can't do anything at all, but there are plenty who aren't that bad off who still aren't able to work because of sickness.
  6. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Neilk,

    I had a similar experience with private disability. They were truly horrible. I was under so much stress because of them and it really affected my ability to deal with my health. It was really traumatic dealing with them and I still have a hard time thinking about it. And since being dropped finances have been absolutely horrible. I know I'm entitled to the money but I don't think I can bear the stress of fighting them, especially with the way stress exacerbates this condition for me.
  7. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Jimells,

    I don't have any tips that haven't already been shared, but just wanted to say I hope some of the tips given here will help and you will soon be finding yourself in a better situation. It's not enough that our health and ability to live so much of live is taken from us with this illness but the financial consequences are so severe too. I'm so sorry you're going through this. I hope some sort of social services can be of help to you.
  8. Nielk

    Nielk

    Messages:
    5,196
    Likes:
    4,986
    Queens, NY
    I am the same way. My husband at the end convinced me to drop it because he saw how sick it was making me but, not one day passes where I don't think about the unfairness of this whole system. We were also relying on this income and now that it has been taken away, I feel bad spending more money on different treatments to help my condition. I wonder how well these "claim examiners" sleep at night.
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,687
    Likes:
    5,525
    Albuquerque
    I knew an anesthesiologist who suddenly got epilepsy. His private disability didn't want to pay. He called the rep and said "Fine, you have confidence that I can function perfectly well in my job? Good, meet me at the hospital at 7 am Monday and I'll give you a general anesthetic. Course I might fall unconscious while you are under. If you are OK with that so am I!"

    He got his disability the next day.

    Sushi
    beaverfury and Ocean like this.
  10. Nielk

    Nielk

    Messages:
    5,196
    Likes:
    4,986
    Queens, NY

    Too bad we are not all Anesthesiologists. I like this story!
    Ocean likes this.
  11. jimells

    jimells Senior Member

    Messages:
    377
    Likes:
    481
    northern Maine
    Mary Poppins,

    Are you talking about private agencies that are state funded, or state agencies? I've been to the state welfare office (DHHS) many times, all they know about are the 3 programs their agency handles directly. About every week or two I receive a notice that Medicaid is about to expire, so I have to go back to DHHS to get it fixed.

    The therapist I saw at the case management agency has an LCSW license. She told me she draws from various methods. I've seen a number of therapists over the years, I was never particularly impressed with any of them. I got a lot more benefit from the various 12 step meetings I used to attend 20 years ago, in northwest Arkansas.

    My Medicaid lawyer wanted me to see a psychologist, but there is a six month waiting list in this area, so I haven't bothered. I did get an assessment from an LCSW. The diagnosis was 'Depressive D/O NOS' and Axis V was 50. I'm told 50 is pretty low functioning.

    I've yet to find anybody who "will fight their way through hoops in the pursuit of social justice." Seems like everyone is so afraid of making waves and losing their job they've forgotten about the clients. Pretty sad way to live.

    I'm proud to say I've never lived that way. Jobs come and go, so what. I've always had enough skills to find some way to make a few bucks, until I got sick...

    I think my regular case worker (He's licensed as MHRT III, I used to know what that is) will be OK. He told me that many of the grant programs he used to draw on have cut their funding - severely. I have to see him 8:30 AM tomorrow for a two hour intake process - some kind of tests, I think. Ugghh. I told them I can barely get out of bed in the morning, but it's the only appointment available. Maybe it will be helpful to have them see me at my worst, if I'm well enough to drive. Maybe the test results will help my disability case.

    Sometimes I feel like my life is being dragged down a black hole, and I'm powerless to stop it. I'm guessing that is typical for folks with these horrible illnesses.

    gg, I saw another thread someplace about LDN. I'll have to try to figure out what it is. Unfortunately I haven't had much luck trying to get the forum search engine to produce useful results. It doesn't seem to know about 'and', 'or', or quoted phrases. Without those features, a text search engine is pretty useless. I couldn't even get a resultset on 'PEM', even though I've seen that phrase in some posts.

    I was born in Plymouth NH and grew up in Derry. As soon as I was old enough to get a license and buy an old beater I spent most weekends backpacking in the White Mountains. As I recall, there are 46 peaks over 4000 feet, and I've been up all of them. Like so many other folks on this forum, I was always very active physcially until struck down by the illness.

    alice1, ocean, everybody else, thanks for your support. Like I always say to my birds when they fuss at each other, "Be nice to your buddy, we're all we got".
  12. Nielk

    Nielk

    Messages:
    5,196
    Likes:
    4,986
    Queens, NY
    Jimels,

    Good luck with your appointment tomorrow. Hopefully the test results will help your case. Be careful though not to overdo it.
    Remember you still need the energy to drive back home.
    Keep us posted.

    Nielk
  13. Mary Poppins

    Mary Poppins PJ Princess

    Messages:
    316
    Likes:
    68
    Take care, Jimels.Yes, I meant a private agency which has some state funding, so is able to see clients who aren't expected to pay. What do they look like in the US? Are there many?

    I'm not in the US so really don't have the knowledge to comment more on a social welfare system I'm unfamiliar with.

    I'm so sorry that you've experience such ambivalent care. Hopefully your other therapeutic relationship proves fruitful for you. Take care.
  14. SSDisability

    SSDisability

    Messages:
    2
    Likes:
    0
    jimells,

    If you applied for SSDI 4 years ago, you are eligible to receive backpay from all those years of waiting in one lump sum once you are approved! I would say your best option at this point would be to hire a specialized SSDI attorney who will ensure that you have all the proper medical documentation, doctor's referrals, and any other paperwork that may be preventing you from receiving benefits. I applied for SSDI 2 years ago, and was denied twice. Then about 6 months ago I went to http://www.socialsecurity-disability.org and found a GREAT attorney in my area. I was awarded benefits just 3 months later and didn't have to pay anything, just a small portion of my first check. Hang in there!
  15. jimells

    jimells Senior Member

    Messages:
    377
    Likes:
    481
    northern Maine
    ss, I signed up with a disability lawyer 18 months ago. As far as I can tell, he has done nothing except to send in the forms to appeal the denials to the next level. Recently I asked his office about helping me find a ME/CFS doctor. I was told 'that would be a conflict of interest', which sounds like total crap to me. I also asked about getting a current copy of the file on CD, twice. The second time I was told that he didn't have any blank CDs. Unbelievable.

    If I could deal with the additional stress, I would try to find out if I can dump him for somebody who will actually do something besides posting pictures of his kid on his website. Winning the disability claim would be such a huge boost to my life, but it just seems like the impossible dream.

    I'm glad to hear you won your case. What did you have for objective medical evidence? Do you have a primary care doc who actually believes you are sick, and maybe knows something about the illness?
  16. jimells

    jimells Senior Member

    Messages:
    377
    Likes:
    481
    northern Maine
    Good news .... The Salvation Army brought me some fuel oil yesterday, so I'll have heat for the next few months. It came just in time, as we might have our first frost tonight. Brrrrr.

    Hope I'm up to working the Christmas kettles for a few hours this year. I don't ring the annoying bell, I play Christmas carols on saxophone. Much more enjoyable for everyone.
  17. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,150
    Likes:
    8,608
    Amersfoort, Netherlands
    Great news, Jim! Yeah, I hate the bells too. Very strident :p
  18. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    I'd love to hear some of those sax Christmas carols. Any chance for a video?

    ETA: And of course, very happy to hear about the fuel.
  19. Nielk

    Nielk

    Messages:
    5,196
    Likes:
    4,986
    Queens, NY
    Glad to hear that some relief came your way. I hope this will be followed by good news with SSDI too.
    We are all rooting for you here.:thumbsup:
  20. jimells

    jimells Senior Member

    Messages:
    377
    Likes:
    481
    northern Maine
    I'll see if I can find someone to record me. The kettles start on the day after Thanksgiving, so it will be a little while yet. If I get a video, where should I post it?

See more popular forum discussions.

Share This Page