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Thread: Who do I even ask?

  1. #1
    Senior Member Sarafino's Avatar
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    Who do I even ask?

    I need some kind of professional to talk to, but have no idea what kind. I have a degenerative nerve disease and am a full time wheelchair user, and still am able to work a little bit, but that can change at any time. I am married but my spouse is not employed (although he helps me with my business when he feels well enough) and has a ton of health problems. Neither one of us is on disability, I used to do very well with my business but now we are barely getting by. Our ACA health insurance co-op went under and we are trying to figure out our coverage options as my husband needs regular medical care. Even though I am disabled I am in much better health currently than he is so I am going to try to get on my state's Medicaid buy-in program. I have never received a disability status from the SSA, so I am having to get some sort of determination which can take 90 days, and this is totally screwing with his need to find a new plan, since it runs both of us through the application process. Plus there is other totally messed up stuff regarding money in our lives, and we are considering getting legally separated to try to simplify things for the future. I would LOVE to to be able to sit down with some sort of professional to lay this all out on the table and see what I should be doing NOW before I am forced to apply for SSDI, and how to keep my husband's medical bills in check, or at least have some sort of plan for what is going to happen when I can't work. I have been asking around for years and no one seems to know what to tell me, even our local independent living center doesn't know where to direct me since I am not totally poverty stricken, yet.

  2. #2
    Not sure what your degenerative disease is, but you might want to check with the local chapter (if there is one) of the appropriate disease related organization. Some have social workers who can help their members with issues such as this. I know this is true for the MS Society as well as the MD Association. You might also find a referral through your local Aging Services programs, or even a County Mental Health Association (social workers are often members).

    (KLD)

  3. #3
    I'm assuming you do know you can have a certain amount of work earnings and be on SSDI? It might be worthwhile to meet with someone at SS office with specific questions about whether you have sufficient work years to qualify, and how much you can earn from limited work (due to degenerative condition), while on SSDI.
    Also, might your husband qualify for SSDI?
    Just wondering if a stable income stream would give you time to sort things out. Note that 2 years after receiving SSDI, Medicare would kick in.
    I would urge you to look into this. If you get SSDI you can cancel it if you wish to work full time in the future.

  4. #4
    Senior Member Sarafino's Avatar
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    Thanks so much. I live in a rural area and there is no support group. There is an MS group, but I don't have MS. Our ILC has groups for low vision, MS, and brain injury, but not anything I fit into. I go to an excercize class there once a week, usually it is just me and the instructor. This is a very rural area and the disabled community is very very small, I have lived here 14 years and only in the last year have I even begun to get to know any other disabled people. I do ask around, but I think because currently I am still lower middle class, or upper poverty class, they have nothing to offer me. They mostly work with those on SSI. I do qualify for SSDI and have earned plenty of credits, but what I would get from that would be 1/3 rd of what we need because for the last 15 years I have underpaid myself from my business to try to keep my husband's student loans under control, effectively screwing myself. We are still trying to get some sort of diagnosis for my husband, and from reading the SS list of impairments it would be a tough go of it to get him on disability because it would fall under organic mental disorders. I think it would be relatively easy for me to be approved. For now, though, just waitng on the state to accept or deny my determination of disabilty is messing with his need to get new health insurance. All my calls to the county human services office don't get returned. I should have done this years ago but honestly I am typically so stressed out trying to get the last bits of work out with my failing hands that there is very little left of me for other matters. If I am successful and can get on my state's buy in program (not the same as regular Medicaid, this is a buy in for working adults with disabilities) then at least if something happens with me it is covered, even if the care is substandard.

    Just writing this helps, I really have no one to vent to in my real life.

  5. #5
    Vent away....this is the place for it. Sorry to hear of the current situation. Would you be comfortable contacting the MS group and asking if you can join a session to see if this group would have similar issues? I think you said your condition is neurological. MS appears to have active organizations and I'm pretty sure that you would get something out of group membership, even though not diagnosed with MS.
    It must be very difficult to reach out for helpful contacts in a rural community, but hope you wander "outside the box" by checking out any disability group you can. These groups often have a wealth of information and tricks to function successfully. Members discuss what works and what doesn't. I think you would be such an asset in such a group!

  6. #6
    Senior Member Sarafino's Avatar
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    That is a great idea, thanks! I hadn't even thought of that, I should at least ask. I used to live in a more urban area and went to an MS group thing at a local rec center and just lied that I had MS. I was pretty envious of the supportive community they had and wanted to persue some of the other group activities they did but they told me I couldn't when they found out I didn't have MS. There are so few disabled people here that further separating people by specific illnesses seems counter-productive.
    Last edited by Sarafino; 11-07-2015 at 11:23 AM.

  7. #7
    Very poor decision-making on the part of person excluding you. Suggest you tell them upfront of your degenerative neurological condition that doctor does not have a name for. It's not unusual that the medical profession will not state a specific diagnosis for disabling conditions. If you felt a kinship in that group you would have been right to challenge someone who questioned your membership. It's not right that someone would exclude a person like that. And by the way, it's my understanding that MS is one of many, many conditions that are tricky to diagnose. In the past I have donated to MS events and would be happy to see programs available to anyone with neuro conditions.
    In a big city I was a member of a support group consisting of persons with the following conditions: Cerebral Palsy, Spina Bifida, double amputee, Polio, and Spinal Cord Injury. It's amazing how cohesive this group was - all with "mobility impairments" - we could really identify with each other.

  8. #8
    Senior Member Sarafino's Avatar
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    That is something I would like, a support group for physically disabled people. I should start pestering them. Why exclude anyone? Although the brain injury people have been very warm and welcoming, knowing full well I don't have a brain injury, and they extended an open invitation to all of their group gatherings. It was really nice of them, but most of them are not physically disabled, they look completely normal and I don't usually figure it out until they or someone else tells me they have a brain injury.

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