Hi,

I have been dx'd for 13 years now with M.S. I have been on SSDI most of that time. I have been working under SGA for the last few years. Each year they send me a work report and I fill it out and that seems to be it. I live out of the country during the summer, away from my home in Mississippi where it is crazy hot and humid. I do this because of my illness. My father gets my mail while I am away and told me last night there is a CDR Long Form that needs a response by 14AUG.

I called SSA today, to say they were rude would be an understatement. The girl told me the form has to be in and they can't give me an extension until the end of Sep when I return home. I won't get the form for at least a week in the mail from the USA. I looked online and can see that I can only answer maybe 1/2 the questions, no way of putting dates and even some of the doctor info as I am not home and have no access to my medical records.

My questions are twofold:

1. I have been told no extension, has anyone ever gotten one? I'm quite concerned because I've had MS so long now that I don't see a neuro on a regular basis, or an optho etc. I see a GP a few times a year for various issues, and she doesn't specifically treat my M.S. I'm not sure if she would support me (like my last doc did) and won't be home to speak with her. Any thoughts or ideas?

2. I do have access to a monthly income from a family trust if SSA was to take away my benefits. I'm wondering how likely that is. I have been considering trying to return to more full time work (I work from home) to see if I can make more money. If I was to call SSA now and let them know I'm planning to go back to work would they allow me to with the CDR going on? My biggest concern is my Medicare, I live in a state that will have almost no options on Obamacare and can NOT afford to lose my coverage. I understand if the CDR is done and they decide I'm not disabled enough then I will lose it but if I go back to work I can keep it for over 7 years.

I hope that all makes sense - I've asked around and so far no luck in finding out if I could go back to work through SSA after they have already sent the CDR - or if the two things aren't linked somehow.

Thanks in advance - I know this was long but was hoping to make some sort of sense!

Barri

Had you chosen the Ticket To Work Program prior to getting the CDR, than you wouldn't have had to deal with the CDR, but once it's been sent, I don't think there is any way around it. http://www.ssa.gov/work/overview.html#a0=14

Your state will decide if you qualify as disabled in terms of Medicaid. http://www.ssa.gov/redbook/eng/healthcarehelp.htm#a0=0

If you do lose benefits eventually, you can fight it--even hire an attorney if you choose.

You are required to notify SS if you're going to be away from home for more than 30 days, they especially have an issue if you leave the country for longer than that, btw. If you didn't understand that, contact your local office from your regular home and explain now. Ask for an extension. Ask for a Supervisor if necessary. If you don't retun it as required, I think they send you a second notice? But that might just be for the short form and you've notified them of receipt already, so I wouldn't risk it.

How much are you averaging a month out of curiosity?

Here's a good link regarding CDR's. http://nymakesworkpay.org/docs/Guide_CDR.pdf

Thanks for sharing your situation. I have no knowledge and can not offer any assistance but several people here are very knowledgable on SSDI matters and may be able to offer you some help and answers. I will be keeping up with your thread and hope you do not lose your benefits.

" I'm quite concerned because I've had MS so long now that I don't see a neuro on a regular basis, or an optho etc. I see a GP a few times a year for various issues, and she doesn't specifically treat my M.S."

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Who does treat your MS ?

The SSA looks at it like any condition that is severe enough to be disabling, will require ongoing treatment. Not following through with appropriate medical care is taken as a sign to the SSA that your condition has improved enough to not require ongoing monitoring.

I'd guess the real answer to that is that there is no treatment except for things like muscle relaxes, nerve blocks, etc. My particular MS issues (the worst ones) are fatigue, heat weakness, visual disturbances and hearing problems (a strange one called hyperacusis which means I hear at -10 decibels vs a normal person, so very sensitive hearing). None of these issues have a cure nor really any treatment. So, while my doctors treat various things, some may or may not be MS related. I suffer from pain in various areas that could or could not be MS, but once they run all the tests they usually give up.

I guess I haven't been thinking about the CDR possibility so I haven't been running to the doctor with every symptom, especially the ones that I just learn to deal with. Honestly even on Medicare the 20% co-pay is a lot so I no longer have yearly MRI's and other tests, just can't afford them. I've probably done myself in and that frightens me. I never know when I will wake up legally blind again or not able to get out of bed but it sounds like there isn't much I can do now.

I do really wish that someone knew the answer to what would happen if I called SSA and told them that I was going to try full time work (as I work part time at home now). Would that then allow me to keep my Medicare as I go back to work? I suspect it's too late now that the CDR is in progress but I've asked all around, including on legal answer sites and no one seems to know if that is possible.

Thanks

Call up your local office and ask to,speak to,a,superviser they should give u a little more time to fill it out. Is this your first cdr? If not when was your last one and Did you get lomg form? Also what kind of job do you have do they give u accommodations

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You also might want to look into the ticket to work program. Also the closer you are to sga the more you enter danger zone.

I had a similar experience, they consider it a trial work period. This was before they had the ticket to work program but it works the same way. You work as much as you want and your benefits remain in full force. After a stated period, I think it was 6 mos. you either are considered able to return to work or not.
Basically this all revolves around the SGA. That is the first red flag they look at. I would re establish your medical care with a neurologist asap. This is paramount if you are going to continue to collect ssdi. They will send out another CDR if you didn't get the first one. Document everything, all phone calls and all correspondence. Don't miss any deadlines, this is the easiest way to assure a big headache with the SSA. They really aren't there to deny your benefits, they're just paper pushers so make it easy for them to see things your way.

I don't know that this would help , I don't know what cdr means, but for 3 years, I have seen my neurologist every 3 mo, I am only on SSDI, but my neurologist has know me for a very long time and does not charge me, as I don't receive much money.

I see a second neurologist and I have to pay $50 every 3 mo, but she suggested once every 6 mo. to save money,

I see a psychologist every 6 weeks for $40 and my chiropractor, because I get panic attacks and don't leave my house except for appts, insurance linked to medicare will not pay anything for that, so with him knowing my circumstances said they will do everything to help me and the bills are taken care of...they don't charge me and I go 1-3 times a week....

my question is....do u know your dr's well enough to sit down and talk to them about your money situation?
it might be worth checking it out. it might not help, but it is worth a try, sounds like u really need reg appts.
I really hope u find a way to do that
if this made no sense I am sorry, darn brain aneurysm left me a lot of not so nice gift and one is a cognitive disorder....so sometimes I read things wrong and say thinks wrong becacuse of that....but I just want to see somethings concerning u not being able to afford to go to dr. I hope ssa will look at your situation better.

1. Yes, you can get an extension but they have to be given by somone other than just a rep that you spoke with. You will have to call and make an appointment for a phone interview. That is the only way I know of. There may be another way that I'm not aware of.

They DO NOT like to give them no matter the situation unless it is due to a medical reason such as being in the hospital or not able to travel etc.. but it can be done if you get that phone interview and the person on the other end is in a good mood (99% of it to tell you the truth).



2. Its good that you have access to other money if you was to lose you ssdi. Not many can say that. Your lucky in that way.

I'm glad you are getting better to the point to where you feel you may be able to work full time (or as they call it above SGA). That is very dangerous ground for us disabled people. Treat it as if walking through a field full of hidden explosives because that is what it is like once the TWP starts.

The ssa makes TWP's and the like sound easy. They want us to think it is there for OUR benefit. Dont get me wrong, if a person is indeed able to return to work the TICKET TO WORK or TWP is a wonderful thing but most that do it are not really ready and end up regreting it. I for on was one of them.

NO,.........DO NOT mention anything about going back to work until your CDR is over. Matter of fact I would not even think about starting one until at least a couple of months after the CDR.

If you bring TWP or TICKET up before or during your CDR I PROMISE you it will affect the way the person reviewing you sees you no matter the facts.

BTW, if they find you no longer disabled they do not just stop your benefits right then and there. They give you a few months of checks and even longer with medicare.

Also, not seeing a doctor and or taking meds for long periods of time can and WILL cause you problems during ANY cdr.

Anytime you go for long periods of time without seeing a doc or taking meds you really need to see a therapist during this time. That way it does not look like you just stopped treatment cold turkey and are now considered NOT DISABLED. Seeing a therapist alone can sometimes qualify you approved depending on what you illness is and what the therapist has to say in your file.

Good luck!

Rake