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Employment

Disability Benefits and MS

  • By Kelly

  • I have been sick with multiple sclerosis for over 6 years now including an entire year that I didn’t walk. I am now not able to work anymore. It literally ran me into the ground as I continued to work through all of these years. I have had a terrible time getting any kind of help, and I don’t have any income coming in and I am single and have no family members to help me physically or financially . I live in Florida now and there just isn’t any help …how am I supposed to survive and continue to live on nothing ?? Someone please explain to me what am I supposed to do ? Thank you for your time
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  • By Kim Dolce Moderator

    Hi Kelly,

    When I could no longer work, I filed a claim for Social Security Disability. To get the process started, go to the SSA.gov site and fill out a short preliminary claim form online and submit it. You will get a call from them within about a week. Inform your neurologist that you are filing a claim and s/he will prepare an evaluation of your disabilities and submit it using the appropriate forms.

    You might hear horror stories about people having their claims denied and having to hire lawyers. I never did, I won my claim and began receiving SSDI five months after I filed.

    Also fill out an application from your county health and human services department for Medicaid and food stamps, cash and emergency assistance, housing if needed. Your local HHS should also have a list of private charity organizations that might help as well. The county should have a free clinic, and there are usually other private non-profit charity clinics where specialists donate their time. I took advantage of such charity clinics, as well as a Care for the Poor program at a local Catholic hospital where I received free MRIs and blood tests.

    You may also contact the National Multiple Sclerosis Society at 1-800-344-4867 for info on financial assistance. If you need a neurologist in your new area, the local Florida chapter of the NMSS can provide a list of MS specialists.

    Hope this helps. It can take a while to find charity resources in your region since they aren’t advertised, but a phone call to the NMSS and your county HHS should get the ball rolling.

    Good luck.

    Kim

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  • By DarlaKaye

    I stopped working when I had my son 4 1/2 years ago. I had an extremely responsible, high-pressure job with an unreal workload and I was really starting to struggle to keep up. I had an amazing assistant that was able to handle an incredible amount of work and I threw everything her way that I could. I was a master delegator. My daughter was born in 2009 and I continued to work for 2 1/2 years until my son was born and I just couldn’t do it anymore. We didn’t know that I had MS at the time but I was really struggling. I was finally diagnosed with MS in early 2014 but my neurologist thinks, based on my account, looking back, of MS-type symptoms, that I had likely had MS for 15 or 20 years by the time I was finally diagnosed. At the end of 2014, my husband encountered a man whose wife had been diagnosed 15 years before with MS and had the same symptoms as me and was on the same drug (Avonex) as me and she had applied for Social Security Disability right away and had been receiving SSD payments ever since. My husband told me about it and thought I should look in to it. I’d always planned to go back to work once the kids were in school but it became increasingly clear that my cognitive issues and fatigue would prevent me from doing that. Drugs can stop the progression but they can’t reverse damage, unfortunately. Not yet anyway. So, I talked to the social worker in my neurologist’s office and she encouraged me to apply for SSD right away because you have to have a work history for 5 of the last 10 years and I had already been out of work for over 3 years by then. She said that if I applied – even if I was denied the first time and had to appeal, they would look back at my original application date for work history eligibility.

    So, I applied. I jumped through all the hoops – even went in for cognitive testing paid for and set up by the Social Security Department. But, I was denied. I DID appeal the decision and my appeal went to the same SSD office but I had a different case worker (they have to assign it to someone different). I decided to pay for a more comprehensive cognitive testing session through my neurologist’s office to hopefully help my application. And I got this great case worker who was so nice – she answered the phone every time I called and she said I could call any time I wanted to know the status of my application even though she couldn’t tell me much in the way of details about what was happening. My application was ultimately approved on the first appeal which I understand is very unusual.

    I submitted my first application in February of 2015 and was approved in August of 2015.

    And THEN, I found out that my kids also receive benefits because they are minor children living in the same home with me. So, the kids get smaller disability payments each month which is just such a huge help.

    So, MS is one of those disabilities on the Social Security list of qualified disabilities. You don’t have to be in a wheelchair or unable to drive to receive benefits but you DO have to have a good medical history that they can see when they request your medical records. You have to tell your doctor every time you get a new symptom. I was told that even though people with MS don’t like to be complainers, we really need to complain to Social Security when applying for benefits and we need to complain about our symptoms to our doctors so there’s a medical record. But don’t wait if you aren’t working any longer – if you go 5 years or more without working, you won’t qualify for benefits because your work history will be too old. So, I encourage you to apply now for SSD benefits, even if you are still able to walk, drive, etc. And don’t get discouraged if you are denied. Even if you are denied a second time, there’s another appeal process. In the end, it’s worth it.

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  • By Landy

    I worked at a manufacturing company for 17years, I was the supervisor of one of the departments, and one day the production manager called me and told me that he is going to let me go, because my employees on my supervision are complaining of my mood swings. I think that my manager use this to get ride of me do to the MS. I found another job doing the same thing, but only worked for three weeks, they notice that I was limping, balance issued, getting weak ect…….. I applied for SSDI, but been denied twice, got a lawyer for the hearing case. Now I have to wait for 12 to 17 month for the hearing date. What are my possibility to get it? Is it hard to prove the case to the judge?

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  • By DarlaKaye

    Landy,

    I did a ton of reading after my initial denial. I understand that the first appeal is usually denied because the appeal goes back to the same office that issued the initial denial. In my case, my appeal went to a case worker that probably knew a little more about MS and the challenges we face so she worked hard to advocate for me and to get my application approved. But in my research, before my appeal reversed the initial denial, I found that your chances of getting approved if it gets to the Administrative Law Judge is greatly increased. I can’t remember the exact numbers but I think it was something like 85% of initial appeals are denied but the reverse is true of Administrative Law Judge appeals – it’s like 80% or something like that are approved in the end. It’s worth hiring an attorney to take up your case and argue it before the Judge. They’ll help gather the necessary documentation from your doctor, etc. and let you know if you need to go in for further testing or get more medical proof of disability. I went in for cognitive testing with a neuro-psychologist to help prove my disability and that was also instrumental in my application finally being accepted. My neuro-psychologist said that people with MS don’t like to complain but when applying for SSDI, you need to really complain to them and not try to sugar-coat your deficits. You also need to complain to your doctor about every little problem you think might be MS-related so it gets in your medical record – you don’t have to treat every symptom or go in for an office visit every time you have a minor issue. But you should call the nurse at your doctor’s office to discuss every little issue because they type that up and put it in your medical record.

    I really hope you have success at your hearing. Do you have a date set yet?

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