Fibro Fay

Discussion in 'Fibromyalgia Main Forum' started by AuntTammie, Dec 7, 2009.

  1. AuntTammie

    AuntTammie New Member

    You posted on another thread, "I cannot do my heavy cleaning, and for the past year and a half I've had to have someone come in and do it for me. If you are on Medicare/Medicaid you should qualify to have someone come in and clean without your having to pay for it. Maybe help you with meals too."

    I have been trying to find somethign like this for quite awhile with no luck, and I am on both Medicare and Medicaid. All that I have found thru them re in-home help is assistance with medical needs and things like getting dressed, etc. I don't need that kind of care. So, I am wondering how you are getting this & how I can get it, too. Is it directly thru Medicare/Medicaid or thru another program that uses Medicare/Medicaid status to qualify people or somethign else?
  2. FibroFay

    FibroFay New Member

    I'm not yet on Medicare/Medicaid. I still have private insurance provided by my ex per a court order. My daughter and granddaughter have been doing my cleaning for me.

    I live in low income housing, and several of my neighbors are on Medicare/Medicaid. Here's how they are getting help at home. We have an area Office of Aging. You need to be 55yrs. old to use their services. These folks call the Office of Aging and ask for their help. Office of Aging assigns a case worker to come in and assess their needs. The case worker sends in the help and Office of Aging pays for it through their allotment, which may be state funds(I'm thinking it may not be federal funds). To qualify people must be at least 55 yrs., and on Medicare/Medicaid. Also, the doctor has to sign away his/her life swearing the patient needs the help.

    Do you have an area agency on aging? If you are to young for this, then do you have a United Disibilities Service? They can help you too. As a last resort I'd say call the United Way office nearest you and ask for help. They will direct you to the resource in your area.

    I'm worried about the healthcare reform congress is working on. They are cutting Medicare to smitherines as far as home care goes. Frightening!

    I know there is so much red tape to getting any kind of help. It's exhausting. Sometimes it feels like chasing rainbows. It helps if you have an advocate. I mostly have to do all my calling, etc. myself.

    Please let me know how you are doing with this. Any other questions I can answer. I don't know if I've helped you any. Those two agencies are the key, unless someone else knows of another one.

    Good luck.


    P.S. Also, the Office of Aging has volunteers who are able to grocery shop or run errands for you. I believe they will also drive you to doctor's appointments. The case worker can assign these.

    I'm editing to say that gapsych has a thread on the ChitChat Board entitled "Housecleaning for the disabled". You might find it helpful.
    [This Message was Edited on 12/08/2009]
  3. AuntTammie

    AuntTammie New Member

    thanks for your reply.....unfortunately I am way too young for the office of aging - this is sadly typical - people who are young and chronically ill seem to get left out of everything (discounts, assistance, life, etc)....I will look into the United Disabilities Service - I cannot remember if they are one I have looked for before, or not

    I will also have to look at gap's thread later....have to get off the computer rt now

    oh and I know what you mean about the healthcare reform - I have been opposed to much of it all along, for this and other reasons
  4. butterflydream

    butterflydream New Member

    i am not near 55 either, so that knocks me out of that.

    i definately need help with the deep cleaning and would be wonderful if their were assistance for this. I'll check out the chit chat board also for that posting.

    Any new info for this anyone please post. Thank you

  5. AuntTammie

    AuntTammie New Member

    well no luck with the United Disabilities Service or chat....UDS does not seem to be located in IL - the only thing that comes up is something for developmentally disabled....I actually emailed the UDS in another state to see if they could refer me to something similar in my state - no luck there either - the response pretty much said something about elderly and then she also suggested calling local churches

    I have not called churches yet, but have over the yrs attended several (either as a visitor or a member) and have never heard of anything like this (lots of short term help, but nothing like what I need).....I am currently attending one of the largest churches in my area (I'm not actually fond of big churches in general, but this one is quite good, and is one of the few that has evening services)...anyway, they do not have anything like this either - I am actually in the very slow process of trying to get a chronic illness/chronic pain ministry started there and would like it to eventually include somethign like this (but that is way down the road and is not my main motivation behind getting this going), anyway, I don't think that churches are going to be the answer, either
  6. butterflydream

    butterflydream New Member

    You did alot of search AuntTammie
    Thanks for all you did do.
    i know i appreciate this.

  7. FibroFay

    FibroFay New Member

    AuntTammie, I don't know how old you are. Is help ONLY available for the elderly? What are younger people supposed to do when they need help?

    I don't know of any churches that have people who would do housekeeping/cleaning on a regular basis. However, in my church a couple of the ladies have cleaned for someone one or two times when the person was recuperating from a hospital stay. Not on an ongoing basis.

    Maybe there's no other way but to hire someone. What if you had someone come in once a month to clean thoroughly and then you'd just try and do what you can until the next month? Or maybe get someone to "houseclean" twice a year. I know it's expensive, but is there any way you could do that? Maybe ask your family to give you a housecleaning gift certificate for Christmas. I don't know.

    The only other thing I can think of is this. Occupational therapists have a wealth of information on what's available to meet our needs. Do you know anyone in that field? I wonder if your Medicare would pay for one or two visits with an occupational therapist so you could figure out what to do to meet your need. Is it worth checking into?

    This is so sad. There has to be help for you guys. In another year I'll be on Medicare (if we still have Medicare). Then I can use the Office of Aging supports.

    I'm out of ideas.

  8. AuntTammie

    AuntTammie New Member

    you are welcome....and if I ever do find anything that could help, i will certainly let you know

    I love your name, btw
  9. AuntTammie

    AuntTammie New Member

    I am 37, and yeah, so far everything I have found is geared towards the elderly or in a very few cases towards other types of disabilities (esp developmental disabilities)....and your question, "what are younger people supposed to do?" is exactly what I have been trying to figure out (with really no luck so far)....there are several others on this board in similar situations to mine and they have reported that they haven't had any luck finding help either

    There is really no way I can hire someone when I am not getting enough from SSDI to even cover the basics.

    Medicare might cover part of the expense of seeing an OT, but I can't even afford the coinsurance.

    I do appreciate your suggestions, though, and it's nice that you are trying to help. The way that people who are young (well younger than retirement age) and disabled by chronic illnesses get completely ignored/forgotten about/left out is one of the hardest things about this....and it does not just relate to getting help with things like cleaning, grocery shopping, etc either....It is pervasive. When there actually is assistance available (like food stamps, for instance), you still have to be healthy enough to get to an appt first (and often they expect you to be there in the morning, which is impossible for me physically). When there are discounts available for things like movies, museums, etc, they are never available for young and disabled people (not that I can actually go to those places anymore anyway, but I think you get the point). Even drivers license renewals are considerably cheaper for older drivers and first time drivers, but not for those on disability.

    Sorry, I don't like to complain, but I am getting discouraged by this stuff, esp the need for help with grocery shopping and cleaning.
  10. FibroFay

    FibroFay New Member

    It is discouraging.

    Why isn't there an advocacy group for people in your situation?

    I wish I had an answer.