Trouble with Social Security & trying to get off disability

[Jessy Pratt]

Hello All-

I've been on disability since 2001. While on disability, I was told I could have a little employment, as long as I did not make over $700 a month. I made sure I didn't, because I relied on Medicare. After returning to work in 2013, I was told the income from 2001 was averaged, and I made over $536 a month. The are considering this to be my "work trial period." They did not notify me back then.

Such a very long and confusing story, so cut to the chase, I did not get my work trial period in 2013 like I counted on and they are saying my Medicare will expire in 2020. They are also demanding repayment of thousands of dollars. Again, there was no notification that I had supposedly gone over my limited amount of income.

I have contacted CF Legal Aid but have not heard back ( I'll call again this week). Has anyone been through this?

I am usually good about keeping papers, but I NEED something in writing from way back 2001 that explains how much money you can make under disability. Is there anyone out there who has something like this?

Working full time while having this hanging over my head is stressing me out so badly that I have severe anxiety.

PLEASE HELP. Thank you, Jessy

 

[amessofphotos]

Here is what I found...

 

[aslong]

Social Security

Hello Jessy

We fight so hard to get it and then cant get out from under it! I would make sure to fill out the back of the notice--- usually on the back of the paperwork there is something where you can request to not pay and give reason.

I had used several TWP (trial work periods)... that should not have counted against me because they were workstudy for school... and they didnot at the time I did them. But, when I started working full time and they were figuring my TWP they ended up counting them and I owed money (thankfully, I was working with an agency that gave me the heads up so I did not spend the money).

I would recommend finding a place to help you- there is the ticket to success here in california. Let me know if you need more information. They are a great agency and they help make sure all your ducks are in a row when you go back to work. They also help if you end of stopping work again... They usually have connections (a contact person) within social security

Wishing you the best
Amy Long 36 wcf ddF508

 

[triples15]

Hi Jessy,

SO sorry to hear you are having trouble with the SSA and disability. I have had my own problems with them (getting kicked off at a review because they said I had "medically improved"-HA and appealing) and I know the stress/worry looming over me honestly made me feel sick. So I totally understand your feelings. Honestly, all the trial work period/how much you can earn etc, goes right over my head. They couldn't make it more confusing if they tried. I have read all the pamphlets, and had it explained to me and still am unsure how it all works. I think they want people to be confused.

I would suggest seeing if this is something Julie with Disability Advocates for Cystic Fibrosis could help you with. She normally helps people get APPROVED for disability, so this would be something a little different. However, she is well versed in the trial work period, and all the ins and outs of SS, so I think she may be able to help. She is also usually up for a battle with SSA. I also tried to contact CF Legal Aid with no response, so I was lucky to find Julie, she has been a lifesaver for me both at my initial application, and when I had to appeal my cessation of benefits recently. We won both times.

Anyway, if you're interested you can shoot her a message at www.dafcf.org

Sorry I can't be of any more help, and I hope you find the support you need and get this issue fixed!

Take CAre,

Autumn 33 w/CF

 

[musclemania70]

this happened to me recently. appeal, appeal, appeal and ask for extentions. they have forms for this.
i had to go back and forth with SSDI for YEARS before they finally just settled the debt for about 20% of what they originally told me i owed. and now i am paying a portion of the debt monthly out of my current ssd checks. you can ask for this monthly payback too.
the only way i got this settlement was becasue i sent a personal letter to the head of the local ss office.
hope that helps a bit with your situation.
you can delay, delay, delay, for as long as you possibly can.

 

[musclemania70]

ps, people at the legal cf hotline never return phone calls - they are horrible at getting back to people so don't hold your breath,
in the meantime file the extentions, ask for TIME to research your problem further.

 

[cflawyer]

Then you are calling the wrong number.
Our number is 1-800-622-0385.

This is Beth Sufian. I am the Director of the CF Legal Information Hotline, an attorney and I am 49 years old and have CF. I have dedicated my entire legal career to representing people with CF. I have helped thousands of people with CF in the past 24 years.

I return every call I receive or another attorney on my staff returns the call. I work 7 days a week returning calls that have been made to the CF Legal Information Hotline and helping people obtain Social Security benefits. Many of you have called me and spoken to me on a Saturday or Sunday. This past Sunday I spoke to 22 people with CF. We have helped obtain SSA benefits for thousands of people with CF.

You must be calling the wrong number. Our phone number is 1-800-622-0385. Or you can contact us at CFLegal@sufianpassamano.com.

I will say my law firm is representing the 4 girls in Arkansas who have been denied coverage for on label Kalydeco by Arkansas Medicaid. Perhaps you read the front page article in the Wall Street Journal about the case. We are representing the girls for free and we have spent 1400 hours on the case in the past 3 months. We have obtained coverage of the drug for 3 of our 4 clients within a 30 day period. Prior to us taking the case the girls waited 2 years for the drug. We are working day and night to obtain coverage for the 4th girl who desperately needs the medicine.

So we are doing our best to return calls to the Hotline this past 3 months within 1-2 days but it may take 3 days. We receive 500 calls a month. Every call is returned. We call 3 times and leave 3 messages. Perhaps your voicemail is not working.

I am shocked that you do not have more respect for all my office does to help people with CF. It hurts me deeply to read your untrue statements. You should call and speak to me directly if you have a problem. People with CF should support each other. I am proud to be a member of the CF community that supports each other and applauds those who work to make the lives of people with CF better.

 

[Jessy Pratt]

Thank you to all for responding. I'm afraid I may had made a mistake though, and sent them a very small check. Does this mean I agree with their decision?

Beth-thank you for your response. I did not mean any offense by my original message; I truly appreciate any help I can get. I DO think cfers should stand by one another. I don't think my message had the intention of complaining or demeaning your efforts or agency. I would very much value your help, and I hope my original message wouldn't skew how you would view my case as I will contact you as soon as I can.

Thank you all!

Jessy

 

[cflawyer]

Sorry, I was actually referring to musclemania's comment. Please email me and we can set up a time to talk today. Always happy to help anyone with CF. It is my passion in life.

 

[aslong]

Beth Sufian and CF Legal Team

The CF Lawyer team is awesome! Beth is great. She helped me get SSi/SSDI years ago. I was denied so many times and I was pregnant at the time. She worked hard and was able to get me approved even though my FEV 1 was high. I reccomend the CF lawyers group/Beth Sufian to everyone... Beth, sorry if you get calls for other disabilities.

The time and dedication that Beth gives to the CF community is priceless.
Thank you Beth for all you and your team does!

My lil girl thanks you too (she is 16).
Amy Long (Guinn) 36 wcf (no longer receiving SSI/SSDI)

 

[musclemania70]

Part of the problem lies in the local cf care centers. Every question i ask my social worker, no matter what the issue: health insurance, work related questions, life insurance questions, patient rights; the answer is always the same "call Beth Sufian".
I believe these questions are being pawned off on someone else by direction of the CF Foundation. They are encouraging the social worker to answer the same way for every question. Either my social worker is passing the buck on simple things she could help with, or cff is simply encouraging them (social workers)to give the standard response since B Sufian is now getting funds (i believe thats how it works) from cff no matter if they have the personnel to support all the inquiries. Hence the LONG delay in getting back to people.

 

[ladybird]

I agree that most social workers for CF are very ignorant of basic legal issues that they could learn if they read a Nolo book on disability. Do not rely on anything a social worker tells you. I have always found them to be pretty useless. People with CF have many legal and financial issues that social workers are simply completely ignorant about. One of the most important things for a working CF adult is to have private disability insurance, for example, so that if you become too sick to work you will be able to collect private disability insurance to supplement the paltry amount offered by SSDI.