Questions regarding SSDI

Does anyone in the States have helpful advice for me, for filling for Social Security Disabilty? I have SCA3 and have been working full time in Sales on my feet for 10-12 hour days.I now use a walker & and the "reasonable accommodation " my company made was to give me a desk as far away from the action as possible and park a car in front of the desk ( auto sales) it is not possible for anyone to see me. Between this and the depression I am in over the progress in the lack of my mobility over the past few months, I am not selling or making money. I spend 18-20 hours a week at the gym, PT, counseling, and the nutritionist, chiropractor, accupinture, neurology… Then work 50 hours a week. I knew there would come a time as things became worse that I would not be able to do my job and well it has come. This is extremely hard to do because it is a huge part of my independence. I know many of you have gone through this and I need your encouragement and advice.
I need to file for Social Security Disabilty. Do I take the FMLA at work and pay for health insurance while I await approval- who can afford that? What do I do?what are the 1st steps? I don’t know what to do or how to leave things with work?

Hi Tina

If you need to file for disability you can apply online or in person at your local Social Security office. I hear stories that people get denied their first time and need to hire a lawyer, and my case I was approved the first time. After two years of being on disability you are automatically enrolled into Medicare, the hospital part. You would still need to have to find a plan to cover your doctors visits and such. I was lucky when I retired I was able to get a retirement from my job and also SSD. I think that having an official diagnosis as I did helps in the application process. I would say your first step would be to contact your local office and make an appointment to discuss things and start the process, I hope this helps

Don’t be scared. I was so scared, everyone told me that I would get denied, have to fight for it, get a lawyer. I got approved within about 2 1/2 months. Just be prepared. Have all your doctor records and test results with you. I worked since I was 15 years old, so I could collect. I think it matters how much you have worked previously. Good luck!!

I was approved in less than 30 days. I had the latest office visit note from my doctor with my diagnosis. I also got my employer to write a letter explaining how my synptoms prevented me from doing my job. I applied online and sent the records and letter to the local office. I spoke on the phone to someone a couple of times. It may have helped that i was a teacher and my speech is slurred. You ddon't get paid for 5 months so be sure to tell them your disability started at least 5 months ago

Good luck!!

I am not sure but you may have to be unable to work at your job at all. It is OK I think once you are on disability to find work. I would check on it before I started any paper work.

Every state has it's own rules and timelines for disability. It may cause you anxiety but knowlege is key. Learn your states rules & regulations. Most info is available online or visit a Social Security office in your town. I've known people who have been rejected and have hired lawyers but I also know people like myself who did NOT hire an attorney. Have ALL your doctors names & addresses along with any of the specialists you see. Your state will contact them and get your medical files & notes.

I also have known people who have gotten backpay for all the time they could no longer work--and also I have known some people (like me) who did not qualify for backpay. I'm not an expert but I think the Family Leave Medical Act is only for those who need to be off work temporarily and plan to return to work soon. Check it out, it may not be for you.

In my case, I live in a state that has paid disability for up to a year. Only a few states have this. If you live in one, it can be helpful, as there is a time lag with federal SSDI. All I had to do was document that I was unable to work, what I wss unable to do and why, and include Doctors information. I think you have a more than clear cut case of why you can’t do your job.

Applying for and receiving Federal SSDI was similar. And I was approved right away. Because there is generally some sort of time lag between when you are approved for SSDI and when you begin receiving benefits , you will generally also receive a check for back payments. My understanding is that Cerebellar Ataxia, because of the severity and permanency, is one of a handful of conditions that are approved routinely on the first application.

I think you definitely need FMLA, even if you continue to work for a bit longer, because you need to be able to take time off to go to doctor appointments and Social Security appointments, etc, without incurring penalties at your job. You must definitely quit and submit an application as soon as possible for disability, but you have to have your ducks in a row first. Get all of the documentation together that you can, if there are any medical tests or whatever that you need for proof, please get them done asap. Get all of your doctors/therapists/etc on board and make sure they will go to bat for you if needed. Get copies of charts, medical tests, etc.

Remember that Social Security is ONLY interested in how your functioning is impaired by your condition, so all of the paperwork that you fill out needs to be filled out with functional impairment in mind. Make sure they know exactly how difficult work is for you now! And fill out the questionnaire keeping your WORST day in mind (not your best day or average day). How difficult is it to function on your worst day? Because your worst days are the days that keep you from being able to work... Explain everything as clearly as you can. Don't be shy about telling them how hard it is to get to the bathroom, to take a shower/bath, to get dressed, to cook for yourself. People hate to be out front about things like this because they think it makes them sound pathetic. But this is no time for false pride, SSA needs to know this so that they can accurately assess your application.

Good luck!

Here is what I put on Facebook in regards to a similar question


This will fall on many deaf ears, create controversy and arguments, and probably cause the earth to plummet into eternal darkness.... It makes no difference.
You need a medical team to PROVE YOUR CASE!!!!!
SS Disability has what is called the list of compassionate allowances. These are conditions where once you are approved, the red tape stops, and you are moved to the front of the line.
HOWEVER, the idea that most people have is that these automatically qualify you to file and receive benefits. While this is kind of true, it's a gray area. Some people (including myself), filed and were approved first time, no questions asked. I have been on disability for 16 years, have never been to an SSD doctor, or had to do a review.
Some get denied 3 or 4 times, and are led to believe an attorney is the answer.
It all revolves around the doctor's diagnosis and paperwork submitted. IT MUST BE BULLETPROOF. The smallest hole, crack, or weak spot, will give them something to exploit. You don't need an attorney....You need a smart medical team....attorneys have them, butt you'll pay a couple grand for the 'expertise'. Be smart, vigilant, and persistent. Make sure your doctors get it right!

It. will really help to stop medications before going to interview at ss. You want to be at your worst not at your best.

Your disability amount depends on an average you earned over the last10 years. I however have not seen anyone get more than $1800 per month.. Most get an average of 1000, give or take a couple hundred. You are also allowed to earn about $700 or $800 a month. Stay there or you will raiser red flags. If you go over, you don't just lose the difference, you lose your benefit for the month. Also, states have absolutely nothing to do with it, as Social Security Disability is a FEDERAL program. States have no say.

Some states have SDI state disability insurance for temporary disability that people use before applying I think. It usually is to replace unemployment when temp sick or disabled.

Thank you all so much for your replies! They are all very helpful as I am anxious about starting this process, however I see no other choice. Work and creating income have always equalled independence and freedom to me. But caring for myself right now feels like a full time job. I also want time with family to build lasting memories. I am so exhausted after all the Dr. appointments and work that I just collapse into bed… Only to stare at the ceiling unable to sleep!

Lawyers won't take your case until you you've been denied at least once. You don't need a lawyer just the documentation to back up your claim. A lawyer can't do anything more than what you can do yourself and you have to pay them.

SSDI has a list (check website) that SSDI automatically covers certain diseases as long as you have the documentation. One is neurological and ataxia falls under that. From the time I filed to when I was approved was about 3 months. The biggest thing is you can't be working, collecting unemployment or anything once you file. If you do your claim is null & void. You may want to contact SSDI to find our exactly what they consider income. Once you are approved you can make so much a month without losing any benefits. SSDI can let you know how much you can make.

I'm a single mom and not working was really hard but try to have some money behind you, I found you can't go without paying your bills but most people are willing to work with you. If you let them know once you have filed most have some allowance for people with disabilities. Don't let things get behind and then contact them, do it soon after you file.

Try to have as much done before you file. Once you file you can't earn any income so make sure you have any doctor appointments and anything else you need before you file.

SSDI tends to deny cases that have the POTENTIAL for that person to get better (not that they will). My sister-in-law had to file because she has spinal stenosis and it took her about 2 years to get approved.

My SSDI payments started 6 months from file date. I had something to do with the disability that you get from your employer (didn't matter whether you had it or not everyone had to wait 6 months).

Good luck!

I hate to say this, but you should not try to ddo it yourself. I have had some experience in the administrative processes and they can be time consuming and complicated. You should expect denials and appeals along the way. You should contact a local law firm (or firms) to get an idea about what is involved. You should contact a firm that holds itselk out for expertise in soc. sec. work. The larger the practice , the better. Ask especially about their previous work. Some only want to take appeal work. Your disability may require special allegations that will set up a future appeal, so I would be inclined to go with a firm that will process your claim from the start. Good luck.

It would be helpful to all if you would keep an update diary here.

After you are successful, please update> Better ye, keep a diary here to share the experience.


This most likely will not help you. For various reasons, one day I had a call from the local office of SSID informing me that I was eligible for disability. I had my first check by the end of three months. There was a lot of paper work to submit. Unbelievable. Good luck.

Dear TinaD, I worked as a social worker for 28 years, the last three years after being diagnosedwith my ataxia. Eventually I had to leave my job due to progressive symptoms of my ataxia. I went on long-term disability (offered by my employer) while being on medical leave to see if I'd be approved for a medical retirement. Long-term disability eventually told me I HAD to apply for SSDI. Therefore, a company they used applied for me. Within three months I was approved for my medical retirement and SSDI. It's true, sometimes people are denied the first time they apply, but from what I understand, cerebellar ataxia has a high approval rate the first time. Jonas is correct, you do not need an attorney to apply for SSDI. Just make sure you cross your t's and dot your i's, and that you and your doctor's are dillegent and thorough with all paperwork...,extremely important! Although a company applied for me, my medical records were in pristine order! My best to you...,;o)

for disability u have u be unemloyed for 6 months to reieve first check then they'll move u over to ss. if ur lucky

Talk with your neurologist. Let them know that your intentions are to apply for SSDI. I applied for it on line. I applied for it march 31, 2012 and was awarded benefits in September 2012,

Carol Holbert said:

Talk with your neurologist. Let them know that your intentions are to apply for SSDI. I applied for it on line. I applied for it march 31, 2012 and was awarded benefits in September 2012,

and ask for a handicap parking permit