As you may know one of our main advocacy goals here at HDSA is to improve the process for obtaining disability benefits for our HD families under Social Security.

In order to make a more compelling argument to the SSA, we need to summon the voices of our HD community members, particularly those who have had difficulties applying for SSDI within the current framework. If you have experienced such difficulties, or know someone who has to whom you can forward this email, we're looking for responses to the following set of questions:

1. How many times have you applied for SSDI?

2. How many times were you denied SSDI benefits?

3. For what reason(s) were you denied SSDI benefits if so?

4. How long did the decision process take?

5. What were obstacles you encountered during the application process?

6. What recommendations would you give the SSA to improve the process?

Please send any responses to me, Sean Luis, at sluis@hdsa.org before October 15. We appreciate any feedback you can provide, as this will prove immensely beneficial in personalizing any suggestions we offer the SSA.


Sincerely,

Sean Luis
Advocacy & Family Services Manager
Huntington's Disease Society of America
505 Eighth Ave. Suite 902
New York, NY 10018
(212)242-1968 x226
(800)345-HDSA
sluis@hdsa.org
[www.hdsa.org]



Edited 1 time(s). Last edit at 10/04/2007 04:29PM by stevei.

What if you had a positive experience? This may sound shady but should those of us with immediate approval and no hassles respond to this?

I think this is a great idea. unfortunately, I'm not far enough along in the process to be of much help, yet.

I have applied. I filled out the documents available on the SSA site. I've included suggestions on this website, as to information on HD, and an emphasis that it is fatal, incurable, and NOT a candidate for vocational rehabilitation.

I have been asked for additional documentation. I've provided it. I've yet to get approval.

That said - I think that the additional information asked for largely was in regards to providing background to SSA on a couple of name-changes that they needed documentation on. Needless to say - this would not apply to most applicants!]

But maybe I should share it, just in case it might.

It's quite legal to change one's name to whatever one wants without going through the legal process - as long as one is not doing it to evade the law or debtors.

Since my funds were extremely limited at the time, I did that. I changed my name when I divorced - and I informed everyone.

It worked quite well, except for the SSA. The IRS has been accepting my taxes under my new name for 24 years.

The SSA has managed to get my annual statements to me, only under various names. In other words, they recognize the SSN - and have kept record of (and obviously accept) my current address - but have proven utterly intransigent on the issue of my name changes!

Since I changed my name LONG before I changed my address (indeed, I think I've had some 7 address changes since then!) - I'm quite unsure as to how they can claim to be so clueless!

Nevertheless, they are - and that has delayed my claim.

How can they claim not to know who the heck I am, when they have been sending me sensitive documentation with my SSN and my earnings on it???

If SSA is so concerned about security - surely they would not be sending such sensitive information to anyone who's identity they were unsure of!



Edited 3 time(s). Last edit at 10/04/2007 01:29PM by JL.

MRO, how long was it from the time that you first applied until you began receiving payments? Did the dr. play a big part in helping your husband get benefits so easily, do you think?

Hi Rowan,
We applied for benefits Jul 2nd online and because we answered Yes to the question will you die from disability, we were refered to the local office, we saw them on the 3rd or 5th. We were approved before the end of the month. There is a mandatory five month waiting period to start payments, and they pay January benefits in February. So we received our first SSD check the end of Feb.

I think it was a God thing. I would love to say that we did a lot of preparing to makesure we would get a positive result but truthfully my husband had only seen doc a few times. So it was not well documented he is decline. He hasn't even been gene tested so I was worried that the gov was going to say it wasn't even proven that he had the disease. We had no idea if he was even really sick enough to be disabled but because he was going to get fired for poor performance we went disabled. Had he gotten fired he would have lost all of his benefits. Rumor has it that our Dr. fills out forms in a way that helps but I don't know how true that is.

But looking back if I could be better prepared I would have documented more symptoms he was having with dr, I would have had an MRI done at the start, and the neuropsych before applying. Anything I could do to document a decline. I also would have six months of expenses in a savings account just in case, but I guess I didn't learn too much cause that still is not a reality either

My husband was diagnosed last February. We had an MRI done and the blood test. He has been trying to work as a subtitute teacher for the last 2 1/2 years or so. He stayed home before that for 2 years with our yougest until she could go to pre-school. We were turned down and we're sending in the appeal letter this week. His nuerologist said he can't work and doesn't understand why he was denied. I've heard they turn almost everyone down the first time. I'm not sure what to put on the appeal application. We can't live on my income the rest our lives with 4 children.

I found some very helpful suggestions here:


[http://www.hdac.org/features/article.php?p_articleNumber=278]

Brackets excluded, of course.



Edited 1 time(s). Last edit at 10/10/2007 03:12PM by JL.

When my husband applied he was approved on the first try.

I did the paperwork and contacted the HD center we used for information.
The gentleman at the HD center had worked with people applying for SS
before and told me how to word certain answers which evidently helped a
great deal.

My daughter was approved immediately just months after being diagnosed. We didn't do anything special on the application although her neurologist did advocate strongly for her. I think initial success depends on where you live. A state agency makes the initial assessment for social security. After that it becomes "national" and it doesn't matter where you live.

I had to quit work Jan 2006 due to my HD symptoms. I had seen little changes over a 6 yr peroid,but the last year of working was so hard. I am a RN and I was so affraid of making a mistake. I went on LTD at work in July, then applied for SSD in Sept 2006. My problem was I didn't go to the Dr over the years and tell of my symptoms, as I knew there was nothing he could do, but I didn't realize I needed the paper trail for SSD. I didn't see the info Phil put on the Lighthouse until the time I was applying, so I used that to help, but I wish I would have told my Dr over the years. I did go in the hospital for depression in 2004, for the HD, and when I got those records for my lawyer the Psych Dr didn't even chart anything on HD!!!!!!!! He wrote I was depressed from multiple reasons, not even mentioning HD!! So I have found out now that when I go to the Dr I make sure they write something about my symptoms. I thought that admission would be some proof, but you don't know what your Drs write until you get the records.
I have been denied twice now, and now it is going to the Judge.
I did go last week and have my neuro psych testing at a COE, so I am waiting for those results. I was frustrated when I left as I didn't know what to think.
I just wanted to write this so others won't do what I did, documentation is everything..

Now my sister who is 50 was just dx with HD. She had the first test for HD that was available back in 1983 and was negative..my whole family got tested at that time and all were negative, but my sis is the only one that now is positive. She was in the hospital and they were trying to find out what was going on with her and they decided to do the new HD test and sure enough she is positive. So I sent her to the HD Lighthouse to learn how to start the disability process..
nancyin ga

I received notice that I have to appear for an in-person evaluation on Monday, the 22nd.

To assess my qualification for SSDI.

This is what I've dreaded most.......

The paper trail is important. Also your age plays a role too. If you are too young, they tend to not want to grant disability if you have a good work record up to it. (What my wife's disability LAWYER said).

You can get a specialist Lawyer for this if you fail your first evaluation. They take a cut of the check you get for backpay. They are limited by federal law on the amount they can get out of the deal.

Age does play a role. I know of one young man who was turned down despite extensive testing which showed cognitive impairment. The letter read that at 30, he was a decade away from disability (because you know, everyone with the gene gets sick at 39.5 years of age, right?). He won on appeal but it is ridiculous that he wasn't approved the first time.

I've already provided an abundance of paperwork. Including print-outs from the Web, describing HD and its symptoms and repercussions.

I provided access to my neurologist, and she has been cooperative.

I can only think that this will be the dreaded in-person "evaluation" by someone who knows very little about the disease - as to whether I appear "symptomatic" enough to qualify!

My daughter was only 22 when she got approved on the first try. Because she had worked all through high school and college she got a bit more than the minimum (SSI level). After receiving that for a few months, Social Security contacted us and said she had to take $450 more per month because of my earnings and the fact that she was under age 23 when she became disabled. She never asked for it and didn't want it but they said she had to take it. It doesn't matter now as it all goes to the nursing facility except for $50.00 per month. Dealing with the social security people has made me realize that they don't even understand their own rules which are applied in a rather arbitrary fashion. The most ridiculous example was when my daughter received a notice that said her payments were being terminated because she no longer lived in the USA. After a lot of worry and probing it turned out that a SS worker had incorrectly opened a second dummy account for her (which she was never paid from) and sending this letter was the easiest way to stop that account. Also when my daughter was first applying she was asked to see their doctor who I found out was a dermatologist (moonlighting I guess). I called them and said that she would not see him as he would know nothing about HD. I said that they could call her neurologist at MGH if they needed further info. They never made her see another doctor and replaced the dermatologist with her neurologist on the award letter. I have to admit I was a bit of a thorn in their side when she was applying (I made a lot of calls and sent a lot of letters) but I guess this is what a Social Security lawyer would have done anyway. My advice when first applying is to be insistant, make weekly calls to find out the status of the case, and do not be intimidated by the process.

I inadvertently contacted a SSD advocacy law firm.

I erroneously thought that their website was ASSOCIATED with SSA.

Not until I received their documents in the mail did I discover that it was a law firm - and that they would be charging $5300. for their services!

JL, I wouldn't go for a lawyer unless you are turned down the first time. I don't know the ins and outs, just my own thoughts. I was turned down the first time I tried to get SSD, but this was because I had fibromyalgia and it was affecting me so I couldn't work. But fibro isn't or wasn't then a disease that impressed anyone. I was so achy I could hardly walk, but apparently it wasn't real. Then HD came into our lives, and when I appealed I told them I had HD, too, and the HD was the disease that put me into SSD, even though I ached more than I wriggled. I know my cognitive was going down then, too, though. The judge for the appeal was knowledgable. MY brother and I took in lots of HD info and a family tree, and the judge, rather importantly, said he didn't need all that, he knew what HD was, and I was being put on SSD as of the time the neurologist diagnosed the disease, which was about nine months previously. It was a hard process for me. For my brother, who applied after I did, it was easy, and he got help right away.

Alice - I did not INTEND to engage a lawfirm. I thought I was filling out an initial application for SS disability WITH the SSA.

It wasn't until I received a packet from Binder and Binder that I found out I had inadvertently (through a web search) contacted THEM, instead of the SSA.

In my couple of phone conversations with them - I heard "mutter mutter disability advocates". The speaker spoke accented English. I didn't find out until I received the written documents that I wasn't talking to the SSA.

God, it's tomorrow! I'm scared.

It's with a Physchologist - not a Neurologist. I'm afraid that he'll be apt to assume that it can all be cured with a little phychotherapy - and not realize there is no "curing" the underlying cause of the psychological symptoms of HD!

Jl, I went to a psychologist, too, and passed so well in my memory tests that I was sure I wouldn't get Disability. He had me count back from 100 in 7s and made me go back all the way to 0! He was amazed. But I did eventually get SSD. I hope you will, too, soon. I think I did the math well because I have to do the bills and accounts every month and keep my adding and subtracting in practice.