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Been working for 2+ months...need SSI & Medicaid advice

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    Been working for 2+ months...need SSI & Medicaid advice

    Hi all.

    I am a C-5 quad under SSI/Medicaid. I am an engineer and have been working for a goverment agency since the end of February. Since I began work I stopped using a home-care agency for fear that they might come back and billl me for that. My cousin is living with me and helps me with all my getting out of bed, showering, dressing and all that stuff that someone with my type of disability needs just to get ready mornings/nights. She is leaving in August and I haven't figured out how I am going to manage. I moved away from my family & friends to take this great job which I love. My income is right at $50,000 and am still recieving checks from SSI. I have not cashed the last 2 but I really need that money because right now I'm paying my cousin $550/month plus groceries and all utilities/rent for both and $50,000 after taxes doesn't go very far.

    What should I do? Should I continue cashing my checks until I offially loose my SSI/Medicaid benefits? What are my options after my cousin leaves. I'm really scared that I am going to have no choice but to quit my job and move back home 'cause I can't afford an aid/CNA with my salary. I have goverment plan insurance but they don't cover home health care and the deductables for my medicine and supplies takes another bite out of my check.
    Any comments, advice, or suggestions would be greatly appreciated!


    Working for the government and not telling them you are working? If you are caught you will be in big trouble. So fess up now. You are entitled to a trial work period, so I doubt you will lose your SSI and definitely won't lose your medicaid for 3 years. You can deduct the costs of things you need to work- like an aide- and that brings down your income. You can do a PASS - save up for something you need to work - like a new vehicle - and that brings down your income level too.


      Originally posted by Xuxan

      Working for the government and not telling them you are working? If you are caught you will be in big trouble. So fess up now. You are entitled to a trial work period, so I doubt you will lose your SSI and definitely won't lose your medicaid for 3 years. You can deduct the costs of things you need to work- like an aide- and that brings down your income. You can do a PASS - save up for something you need to work - like a new vehicle - and that brings down your income level too.
      You're making it sound as if I am being deliberately deceptive.
      A. I didn't know I was suppose to contact SSI and tell them I was working. I thought once they saw that I was receiving a paycheck & paying taxes, I'd be disqualified...
      B. I have not cashed ANY SSI checks since I received my 1st paycheck & have not used any Medicaid related services.
      C. I have gotten so many different takes on what happens & what I should do that I just stopped...leaving alone for the 1st time as a C-5 quad in a place where you have 0 family & friends is draining as is...and I'm not making excuses, I am just trying to do the right thing, hence why I posted.


        Social Security will eventually catch up with you as they do spot checks on your reported income with the IRS. It can take them a while though, and they consider you working without reporting it to them as fraud, whether you intended to defraud them or not. You will have to pay back any checks you cash, and may also have a $$ penalty. Just not cashing the checks does not get you off the hook.

        I am curious about why you did not investigate all of this before you took your job?

        Right now, I would recommend getting together ASAP with the benefits counselor from a good ILC and see if they can help you with a PASS, Ticket to Work or other programs, either through SSI or the state. Once you have a plan roughed out, then have them help you contact SS and arrange to return any checks to which you are not entitled.

        You can deduct the costs of your medical supplies and attendant care once you have exceeded the 2% of your adjusted gross income, but if you are working and not on a PASS or Ticket to work, you indeed may have to private pay for attendant care. I would definitely recommend NOT depending on an agency for PCA care, as you will have to pay through the nose. You migh want to consider finding someone who will take room and board in lieu of some of their pay, and rent a large enough apt. or house to be able to accomodate this. Get your care organized so that you need the minimum number of actual hours possible.

        Good luck!

        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


          Working for the United States Government

          Salemero you started a government job this past February with a government agency? Great! Wonderful employer! Employer of choice! The best is this great Nation!

          You have a nine month trail work period where you can work full-time and collect Social Security Disability. Just give Social Security a call and inform them you started work in February.

          About your situation? I have been for a Federal agency for fifteen years and served on the Disability Awareness Advisory Group and issues like yours to do come to the group. One thing you can do is talk to your branch chief or first level manager. Basically explain your situation. Today working for the federal government they should be aware that you need time to get ready for work. Another thing you can ask for a First 40 work schedule. Some days you work six hours and others days you can work 10 hours if you feel like it but you must put in forty hours of work within the seven day period. Your first forty hours of work is your work week. The US Department of Labor Office of Disability Employment Policy calls that customized employment.

          For your insurance? When I first started with the federal government they had MetLife medical insurance. After five years or so they dropped them and I was forced to choose another medical insurance. I chose one that covered durable medical equipment and supplies which was Aetna. All my chairs, standing frame, cost for a ramp, urological supplies and any other DME you need are covered 100%. You may want to choose another medical insurance company during opening season which is usually November of each year that covers DME and home health care. Generally all government agencies use the same medical insurance companies except the United States Postal Service.

          Another option that the federal government encourages is telework program. Telework is where you work at home. I have been teleworking at home for my third year now. Yes you can have telework and First 40 too. The federal government is very flexible with people with disabilities. They strongly encourage people with disabilities to work for the government. Believe me, just explain your situation to your supervisor or an EEO person and they will find ways and means to help you. The government will work with you to keep your employment. Look into what benefits your agency gives employees with disabilities.

          "We must overcome difficulties rather than being overcome by difficulties."



            When you get your letter each year about how much your check is going to be you get all the rules you are to follow. Like notifiying the government if your income changes. They told you what you had to do - you just didn't read it.

            Believe me, the government has no idea if you have cashed your check or not. It has been issued and unless you tell them otherwise- they assume you cashed it. These checks expire. Check the date- you might not be able to cash your March check.

            The government wants you to work and wants you to get off benefits. Only 3% of the people in the US on SSI work. They government is bending over backward to make work opportunities for people with disabilities work.

            But they can't help you if you are silent.

            Yes, the information is confusing. Yes, there are multiple programs out there. Yes, it is hard to figure out what the best thing to do is. But collecting a check while you are employed without reporting it is not something they are going to excuse - it's illegal - a few months that I am sure you were entitled to it anyway is not a problem.

            What can happen, is if they find out, rather than you telling them, they will investigate. And while they investigate your checks stop. If you should have gotten them, you will get them in a lump sum. But what do you do in the mean time?

            I know this because it has happened to more than one friend of mine.



              1. notify social security and tell them you have sustained gainful income from a job you have just started. get a copy of your SF-50's from your Human Resources department so you can provide copies, if they ask for record of employment. For us FEDS, SF-50 is the form that shows our latest Notification of Personnel Action, anytime your rate of pay changes.

              2. Since you are on SSI you may be eligible for a program called 1619b through Social Security. It is a program that some SSI recipients are eligible for who can retain certain services, such as their Medicaid. It would be good to know if you can take advantage of this benifit. If not, well at least you investigated it, so be sure to ask the Social Security Office about it when you call.

              3. Try to keep copies of any notice you get from Social Security. You probably wont hear from them for a while if you don't contact them because you can have income for a little while in a trial work period before they notice, or they may see the income once you file taxes.

              4. Florida has whats called a "Medicaid buy-in" program where you may be able to buy into keeping your medicaid while working. call your case manager for your counties Medicaid program to tell them you've started working, and if your eligible for this. (maybe your on it now, I don't know)

              5. If you can, try to cash your SSI checks and put them somewhere. I wouldn't put them in a bank account but try to save that money, so in case you need to pay back Social Security you will have that money available. I think for me, it took about a year for everything to get finalized with Social Security after I started working. After my trial period, I owed like $1200. They will work with you on payment options if you need to, but try to make sure you get everything taken care of up front.

              6. There may be a program you can take advantage of through your Independent Living Center that will help defray the cost of some of your pca expenses. I'm not sure where your living in Florida but you should be "ok" w a 50K income, but you must budget wisely. All of your co-pays, pca income you pay, medical expenses are deductible on your yearly taxes.

              7. You can do it, just try to remember that! The first year is so confusing, but you will be a pro soon!. A lot of us here on CC do it. I am a c5/6 and I don't have any family support. I do have an assistance dog, it is a great help, esp living alone. I dont know if I've covered everything, prolly not, but a start. I wish you luck!


                Blue Cross/Blue Shield is one of the better options to look at during open season. I'm not currently working but the spouse and every we know who hasn't pulled early retirement from gun jobs do. Some agencies are large enough to have a RN and/or docs on board at all times to actively help disabled employees during working hours. Hey, I hear the CIA does caths for their valued techs and analysts with security clearences. Check your agency for options like that also. Uncle Sam has been actively recruiting at colleges and Abilities Expos for years and specifically the disabled. If you also have that clearence you have it made. But if you do deal with the SSI people soon or talk to human resources on how to de-mess this up before it causes problems. Congrats on being back in the $$$.
                Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.


                  Congrats on a good job Salamero.

                  Do you have Medicaid or Medicare - or both?

                  Medicaid is income based - so you'll lose that because of your income. Are you getting SSDI and Medicare? If so, you'll be able to collect SSDI for 12 months after starting work. You can keep your Medicare as long as you're disabled, if you have it.

                  I think if you're getting SSI (not SSDI) the same 12 month back to work program applies.

                  I returned to work long ago and didn't say anything for almost a year. Then I reported it to SS, and everything was cool.

                  Good luck in your employment.

                  - explains it all.
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