Has anyone had any problems/delays in applying for SSD with Spinocerebellar Ataxia?
this is for the US...
you should not have a delay since SCA is on their compassionate list (which means you are entitled to disability right away.
I was totally prepared when I applied. I applied online. A few days later I got a date for a phone interview, in the mail. It was about a 2 week time gap between. During that 2 weeks, I took one day and went to the local SSA office and sat there until my number was called (about 1 1/2 hours). During the discussion with the SSA worker, I presented for the record all my medical records. MRI/MRA reports, Neurologist notes and diagnosis, Physical Therapy evaluation and recommendations...also I included my records back 10 years showing where my symptoms started to show.
They did not give me the 10 years back because they said even though I had it and was "symptomatic", I was still able to work and was working. They will give you, when you can show, the time you stop working up to and after you applied. I was just thankful that my fiance' and I had not gotten married, because his income would have affected my benefits as I would have to claim his income.
Heck, you could have already applied and been approved, but if you haven't I know for me it took 2 1/2 months start to finish until I got the award letter. By the time I got the award letter, the money was already in the bank as I chose the direct deposit option.
Hope this helps.
Sentient SF said:
this is for the US...
you should not have a delay since SCA is on their compassionate list (which means you are entitled to disability right away.
My sister got her's approved in 5 months. I have SCA 6 like her and will eventually go through the same process. She told me that since it's been less than a year or two since my "official" diagnosis, I will want to dig up any dated information that can show onset of the symptoms because they want to see at least a year or two of having the disease. I had severe migranes about 7 or 8 years ago. I began having dizzy spells everytime I worked out (or when I was very physically active) about 4 or 5 years ago. Around that time, my doctor also said I was suffering from tension headaches (which were located right at the cerebellum). And, about a year ago, my doctor thought my dizzy spells were being brought on from low blood pressures. I saw a specialist who confirmed low blood pressures (hypotension) and Syncopee (fainting). She said that the paperwork they sent her was time sensitive and had to be returned to them by a certain date. So, if you filed, hopefully they got everything in time. I hope that was helpful and best of luck!
I was turned down in England the first time .You have to keep fighting.I have had no problems since i let the citizens Advice give me some advice.I didn't even have to go to an appeaal .I got it anyway now.
Marie
I am from Scotland in the UK and I find that there are differences in the USA and the UK in whats genetic 'Spino Cerebellar Ataxia' (SCA) and what is described here as an 'unknown cause of CA'. My Neurologist told me after my first visit that he was unsure if I would be entitled to disability because I don't have a cause for my ataxia. This really annoyed me because regardless of which type of ataxia I have I still have Cerebellar Ataxia as a severe disabilty condition.
I just wanted to say that I agree to America's take on Sca and how they are more compassionate and uderstanding of ataxia as being a disabling condition than the UK's attitude of, 'I don't know whats causing it'. In my case I have Cerebellar Ataxia, so why should a cause of the condition determine whether or not I should be entitled to disability?
In my case Michael I think ignorance came before intelligence. Maybe my Neurologist felt powerless because he couldn't connect my symptoms to the shrinkage of my cerebellum? Who knows?
Thank you all for your replies. I have not filed yet. I am still trying to work full time. I am a bit nervous about filing because I am afraid there will be a long delay and my family cannot afford that. I plan to file in May, however. I am reassured that the US has made sca a Compassionate Allowance situation. Are there certain things you did when filing that you believe worked in your favor?
Jodie,
As I said earlier they are going to look at when you got diagnosis'd, why you kept working, and why you chose May to file. I am just telling you based on the questions that they asked me on the telephone interview. When you file online or in person, it is a process. Make sure you have doctor's name's, dates you saw them, any tests they ordered, etc... They will also want the addresses of said doctor's or hospitals where you see the doctor or had the test performed. Also, any PT evaluations or any other professional evaluation list that too. They want all the meds you take as well as who prescribed them and what they are for.
In your case, since you have continued to work they are going to ask you why more questions than most, about the why now. They are the government, it is their job to be difficult, but really they will give you your SSD. They will also send you a form to fill out that asks you what you can do day to day. Example: Can you cook your meals, do you need help brushing your teeth, etc. , when I answered mine, I said that yes, I still did those things for myself, but I needed someone to drive me to appointments and take me shopping. (which is true) I also told them that some days are better than others. Again, they are going to question that you are still working. If your boss would write a letter on your behalf explaining that for the last (period of time) Jodie has been on light duty or only doing a sit down job, or better yet has had to stop doing her regular job in exchange for a desk job. That they kept you to help you out financially but your health is getting to be too bad for you to be in the workplace anymore. This would go a long way to diffuse their questions.
Have you also considered that since you are married that your husbands income is going to figured into what your total benefit is? I was going to get re-married this summer, but when they told me that I will not be getting married again.
Right now I would be gathering all your medical records so that you can take them, and the letter from your boss to the local SSA office and submit them for the record. That way when they call you for your interview, the interviewer can see all the information. They will tell you that they are going to half to request all your records again, but they won't. I checked. They used what I submitted. Make sure that you get a ICD-9 code (diagnosis code) from your doctor. I called the billing department in neurology and the girl wrote me a really nice letter on the hospital letterhead detailing my diagnosis. I say to contact billing because they are the ones that deal with the codes.
I hope this helps...good luck to you. If you ever want to talk and not in a public forum, you can email me at ■■■■■■■■■■■■■■■■■■■■■■■■■
Also, if you file in May you should have your SSD by August. :)
Cheryl said:
Jodie,
As I said earlier they are going to look at when you got diagnosis'd, why you kept working, and why you chose May to file. I am just telling you based on the questions that they asked me on the telephone interview. When you file online or in person, it is a process. Make sure you have doctor's name's, dates you saw them, any tests they ordered, etc... They will also want the addresses of said doctor's or hospitals where you see the doctor or had the test performed. Also, any PT evaluations or any other professional evaluation list that too. They want all the meds you take as well as who prescribed them and what they are for.
In your case, since you have continued to work they are going to ask you why more questions than most, about the why now. They are the government, it is their job to be difficult, but really they will give you your SSD. They will also send you a form to fill out that asks you what you can do day to day. Example: Can you cook your meals, do you need help brushing your teeth, etc. , when I answered mine, I said that yes, I still did those things for myself, but I needed someone to drive me to appointments and take me shopping. (which is true) I also told them that some days are better than others. Again, they are going to question that you are still working. If your boss would write a letter on your behalf explaining that for the last (period of time) Jodie has been on light duty or only doing a sit down job, or better yet has had to stop doing her regular job in exchange for a desk job. That they kept you to help you out financially but your health is getting to be too bad for you to be in the workplace anymore. This would go a long way to diffuse their questions.
Have you also considered that since you are married that your husbands income is going to figured into what your total benefit is? I was going to get re-married this summer, but when they told me that I will not be getting married again.
Right now I would be gathering all your medical records so that you can take them, and the letter from your boss to the local SSA office and submit them for the record. That way when they call you for your interview, the interviewer can see all the information. They will tell you that they are going to half to request all your records again, but they won't. I checked. They used what I submitted. Make sure that you get a ICD-9 code (diagnosis code) from your doctor. I called the billing department in neurology and the girl wrote me a really nice letter on the hospital letterhead detailing my diagnosis. I say to contact billing because they are the ones that deal with the codes.
I hope this helps...good luck to you. If you ever want to talk and not in a public forum, you can email me at stockdalecheryl@gmail.com
Thank you for the advice Cheryl. I have two excellent doctors that are willing to submit information to help my case. I was thinking that I would just let SSD request all the documentation they needed but it sounds like I need to gather information on my own. Did you have the doctor fill out a Residual Functional Capacity Form?
As far as being married affecting my disability payment, well I guess that can't be helped.
I also don't know why my Cerebellum is shrinking or has shrunk. All I know is I can't speak, move unaided or write.I keep comparing what I could once do with now and that is not good for my mental health.My CA is definetely degenerative.I could once work and drive but now I cannot so I would say it is a degenerative condition.There is no known cause but my stress related oproblems went away as soon as I gave up work so there is that one note of optimism.My mental health has definely improved.I gave up teaching about 4 years ago and feel so much better.I gave up work before my diagnosis .I couldn't cope but I didn't know why.Hows the driving going.
Marie
Iain Stevenson said:
In my case Michael I think ignorance came before intelligence. Maybe my Neurologist felt powerless because he couldn't connect my symptoms to the shrinkage of my cerebellum? Who knows?
Hi Marie hope you are still coping well. I also believe that my CA is degenerative. I'm just trying to be positve by thinking that it may have stopped progressing at the moment. After receiving rehabilitation therapy I found that I was having better control over my movements but I still remain to be very unstable on my feet. The wory for me just now is being told by the health authorities that I am fit for work. A couple of weeks back I had to fill in a medical form asking about my disability and how it affects me. It's quite stressful because it took a long while getting my disability allowance and now they want to know more about my disability. It would be much easier and less stressful if Ataxia was recognised as being an automatic allowance for disability like Americas compassionate allowance for automatic disability.
I'm awaiting conformation from my Neurologist to the DVLA who will determine whether or not I am able to drive Marie.
Marie Turner said:
I also don't know why my Cerebellum is shrinking or has shrunk. All I know is I can't speak, move unaided or write.I keep comparing what I could once do with now and that is not good for my mental health.My CA is definetely degenerative.I could once work and drive but now I cannot so I would say it is a degenerative condition.There is no known cause but my stress related oproblems went away as soon as I gave up work so there is that one note of optimism.My mental health has definely improved.I gave up teaching about 4 years ago and feel so much better.I gave up work before my diagnosis .I couldn't cope but I didn't know why.Hows the driving going.
Marie
Iain Stevenson said:In my case Michael I think ignorance came before intelligence. Maybe my Neurologist felt powerless because he couldn't connect my symptoms to the shrinkage of my cerebellum? Who knows?
My doctor didn't need to fill out any paperwork for me. Everything that I presented was sufficient in their eyes. God knows I prayed it would be...dealing with the government, I was prepared for them saying, "we need one more thing"...LOL
SSD didn't even ask about a Residual Functional Capacity Form. Honestly, throughout this whole process, it is the first time I have heard of the form.
I am glad that you value your marriage and know that your marriage is more important than a benefit payment. I remember having a good marriage. You are so blessed for that! Having that love and support in dealing with this so important.
Have a good day!
Sorry Michael I think I missguided you into thinking I have to return to work. I think its maybe a formality here in the UK for the benefits agency to keep asking if our disabilities have changed. Its the whole process of having to fill out lots of medical forms on regular basis'. In the form they sent me it states that I may have to go for a physical medical examination. With our new Conservative government now in charge of the country they are completely overhauling the benefits system which makes it even more stressful. This is partly because there are many frauds who just don't simply want to work at all. No doubt many fraudsters will still be able to fool the benefit system but genuine people like ourselves have to suffer during the process.
Hope this makes better sense to you Michael. Take care. Iain
Michael Ward said:
IAIN:
Let me see if I understand your situation?
The government wants you to return to work?
I hope they sort it out in your favor!
Kind regards,
michael
Iain Stevenson said:Hi Marie hope you are still coping well. I also believe that my CA is degenerative. I'm just trying to be positve by thinking that it may have stopped progressing at the moment. After receiving rehabilitation therapy I found that I was having better control over my movements but I still remain to be very unstable on my feet. The wory for me just now is being told by the health authorities that I am fit for work. A couple of weeks back I had to fill in a medical form asking about my disability and how it affects me. It's quite stressful because it took a long while getting my disability allowance and now they want to know more about my disability. It would be much easier and less stressful if Ataxia was recognised as being an automatic allowance for disability like Americas compassionate allowance for automatic disability.
I'm awaiting conformation from my Neurologist to the DVLA who will determine whether or not I am able to drive Marie.
Marie Turner said:
I also don't know why my Cerebellum is shrinking or has shrunk. All I know is I can't speak, move unaided or write.I keep comparing what I could once do with now and that is not good for my mental health.My CA is definetely degenerative.I could once work and drive but now I cannot so I would say it is a degenerative condition.There is no known cause but my stress related oproblems went away as soon as I gave up work so there is that one note of optimism.My mental health has definely improved.I gave up teaching about 4 years ago and feel so much better.I gave up work before my diagnosis .I couldn't cope but I didn't know why.Hows the driving going.
Marie
Iain Stevenson said:In my case Michael I think ignorance came before intelligence. Maybe my Neurologist felt powerless because he couldn't connect my symptoms to the shrinkage of my cerebellum? Who knows?