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Everything You Need To Know After You Get On Disability



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What You Need to Know When You Get Your Award Letter
  • If you have just received your award letter, you can expect your backpay and first monthly check to start in 30-90 days.
  • If you are homeless or becoming homeless, don't wait. Contact Your Congressperson right away. They may be able to get your check released much more quickly.
  • You may get a letter which says you are "medical improvement expected" or "medical improvement possible" or "medical improvement not expected." Don't freak out if they write this. It is standard practice and everyone is put in one of these categories. The categories are used to determine how often your case is reviewed (see section below for what you need to know to pass a review).
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What You Need to Know When Scheduling an SSI Interview
  • After your award letter, you may be contacted to set up an SSI Interview. This interview will be questions about your finances and living situation. They will not ask you about your health or disability.
  • You may request to have the SSI interview over the phone if this is easier for you.
  • Some people decline their SSI interview, to save time and hassle. Unfortunately, sometimes this is the wrong choice and people wind up not realizing they are throwing money away! The SSI regs are very complex and do not work the way most people think they work. Here's what you need to know:
  • If you are poor: You should probably go to your SSI interview, even if you think you are not eligible. You would need to research and really understand the regs around established onset dates, five month waiting periods, and backpay and how this affects both SSI and SSDI. If you have not done this, you should go, or you may be throwing money away.
  • If you are not poor: If you have money in the bank or you are married to someone with good income, then you may wish to decline this interview, since you will not be eligible for SSI money. This may or may not make your process faster.
  • When I say "poor" I mean less than $2,000 in the bank plus income of less than $753/month. If you are married, I mean less than $3,000 in the bank plus your spouse has little income. (The marriage regs are very complex, so I can't give you an exact number)
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What You Need to Know When You Get Your First Check
  • If you are poor and not married, in most cases, you should be eligible for at least $733/month. If you are getting less than this, there may be a way to correct the problem. It's important to look into this as soon as possible. Once it has been more than 12 months since your approval, it may be hard to correct this problem. Feel free to contact me if you'd like help sorting this out. Or you can Learn more here.
  • If you are married and your spouse and you are both poor, you will usually be eligible for at least $733/month. See above.
  • When I say "poor" I mean less than $2,000 in the bank plus income of less than $753/month. If you are married, I mean less than $3,000 in the bank plus your spouse has little income. (The marriage regs are very complex, so I can't give you an exact number)
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What You Need to Know When You Get Your Backpay

  • Some people get so excited when they get their backpay they want to rush out and buy everything they have been missing. I've seen this lead to regrets. I hope you will take some time to think about what your life may be like in ten or twenty years. If you are permanently disabled, this backpay may be the last time in your life you have money in the bank. I hope you spend it wisely and I hope you spend it well. Living on disability is hard. Being poor and disabled is hard. Someday you will be glad you made good choices today.
  • If you have debt, creditors can freeze your bank account and then you won't be able to get any of your backpay money! Luckily, the laws allow you to protect your Social Security money.
  • If you receive a large backpay check, there are ways to lower your taxes on this money. There are special deductions you can claim, and ways to declare the income over several years. The rules are complex. You can research this online or consult a tax advisor. If Social Security is your only source of income, you probably will not need to file or pay taxes. If you are on SSI you almost certainly will not need to file taxes.
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What You Need to Know When You Read The Rest of This List

  • SSI and SSDI are two different programs. They sound the same but they are different. Social Security has done this deliberately to confuse you. Some people are on SSI and some people are on SSDI and some people are on both.
  • If you are not certain what you are on, you are not alone! It is confusing! You can check your the letters Social Security has sent you or you can call and ask. If you have just recently been approved, it may not be decided yet. I have attempted to put together a little chart that will help you figure out: What Am I On?
  • Medicaid and Medicare are also two different programs. They also sound the same, but they are also different! They did this just in case you weren't already confused enough. Some people are on Medicaid and some people are on Medicare and some people are on both.
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What You Need to Know If You Have Kids

  • For SSDI: You should be able to collect extra money! Go down to your local Social Security office and ask to add your children to your SSDI claim. This will not happen automatically, you must enroll them if you wish to get this money. The funds will usually go to the parent with custody, but for joint custody it can be a bit more first-come-first-serve. Try to do this as soon as possible.
  • For SSI: You cannot get extra money for your children. However, you will often be eligible for more snap food stamps if you are disabled. Ask your food stamps caseworker to use the special disability regulations to calculate your case, and be sure to give them copies of any medical bills or expenses. Your children should be able to get free medical care through your local Social Services or Family Services department. In most states you can also get inexpensive internet and computers - contact internet providers in your area and ask for low income programs.
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What You Need to Know About Backpay & Time Limits

  • SSI only: If you get a big SSI backpay check, Social Security asks you to spend it within nine months. Social Security will allow you to spend your backpay in any way you wish, as long as you don't give it away and you do not own more than one house, one car, or other items of high value. After nine months, social security will start looking at your bank accounts and other money. If you ever have more than $2,000, Social Security may ask for some of it's money back. Your backpay may also cause you to lose your food stamps if you do not spend it quickly.
  • SSDI Only: There are no time limits or restrictions from Social Security. Spend or save as much money as you wish in any way you wish. However, saving your backpay can cause problems for other programs and services. For example, it can cause you to lose your food stamps, lose utility assistance, and it can keep you from getting in a Medicare Savings Program or from continuing Medicaid while you are waiting for Medicare.
  • Both SSI and SSDI: If you have debt, your backpay may only be protected for two months. Learn more here
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What You Need to Know About Health Insurance

  • For SSDI only: You will get Medicare. Social Security should write to you and tell you when your Medicare will begin. It will be 29 months after your established onset date.
  • For SSI only: Your will get Medicaid. It will begin immediately. In most states this will happen automatically for you, but in some places you may need to enroll.
  • For SSI & SSDI: If you are in both programs, you get both Medicare and Medicaid!
  • If you have outstanding medical bills, in some cases you may be able to have them retroactively bill Medicaid or Medicare, depending on when the bill occurred and when your coverage began.
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What You Need to Know When You Get On Medicare

  • This is Medicare only. If you are on Medicaid, ignore this part.
  • If you are low income and getting Medicare, sign up for a Medicare savings program. This can save you more than $100 every month! There are four different Medicare Savings Programs. Please take a look at each of them. As a very loose guideline, if your income is less than $1,350/month and you may qualify for one of these Medicare Savings Programs. You are allowed to own one house and one car.
  • Medicare Savings will not happen automatically. You must enroll, or they will start taking Medicare money out of your check every month! Here's the contact info in your state.
  • If you get turned down for a Medicare Savings Program, there may be a solution. Some people are turned down because they have money in the bank or they just received a large backpay check. If this happens to you, you are allowed to spend your money and then apply for Medicare Savings. You can spend it in any way you wish as long as you do not give it away or own more than one house, one car, or other items of high value. As soon as your bank account is below the limit, you can reapply for Medicare Savings.
  • If you have questions about Medicare, or need help selecting a plan, I have heard that The Ship Program can be very helpful. Don't worry if the program says it is for seniors. Call them anyway and they can help you.
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What You Need to Know When You Get on Medicaid
  • This is Medicaid only. If you are on Medicare, ignore this part.
  • It is very important that your bank account always be under $2,000 by the end of the month ($3,000 if married). If it is ever over this amount for one month, make sure to spend it down before the end of the next month. The longer it stays this way the worse the problem gets.
  • If you think you will receive an inheritance or money at any point in your life, look into setting up a Special Needs Trust ahead of time. This will allow you to receive money without losing your SSI or Medicaid.
  • If you are on Medicaid you can get free Medicaid taxi rides to all your doctor appointments.
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What You Need to Know At Anytime You Need Care or Help
  • If you need someone to help care for you, you may be able to get care in your home through a waiver program. Someone can assist with personal care (bathing, dressing, eating) as well as household help (shopping, cooking, cleaning). Learn more here: How To Get Free Help In Your Home
  • If a friend, loved one or family member is already providing this kind of personal care for you, you may be able to get that person paid. Learn more.
  • If you are homebound, you may be able to get nurses, doctors or physical therapists to visit you in your home. Learn more (scroll to the bottom)
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What You Need to Know To Prepare for Disability Reviews
  • Social Security will send you a Continuing Disability Review to review your health condition from time to time. I promise you this: These reviews will be much (much!) easier than whatever you just went through to get approved. Approximately 99% of reviews are approved in the end, though some require appeals. If you follow the steps below, you won't have to appeal and in most cases all you will have to do is fill out one form!
  • Your reviews will generally be set for a 3, 5 or 7 year cycle. Social security usually tells you your review cycle in your award letter. They often do not hit the 3, 5 or 7 year mark exactly, and are sometimes several years late.
  • Social Security likes it when you continue to see a doctor. When you are reviewed, they will often collect records for the past twelve months of your medical care. It is helpful to continue to see your doctor regularly, particularly in the twelve months before your review is expected. Try to see your doctor every several months, or whatever schedule your doctor recommends.
  • It's a good idea to check to make sure your doctor supports you. Don't wait for review time. It's better to find out now, while you still have time to make changes. Try telling your doctor you are on disability and discuss your limitations. Ask your doctor if she believes you still have a severe condition. If needed, check your medical records and see what your doctor is writing about you. Many people switch doctors before they find one that understands their condition.
  • Social Security also likes it if you continue to follow treatment. They like to see that you have continued to fill prescriptions and take your medications. They will not drug test you, but they will note if your doctor writes that you have refused treatment. If you are unable to continue medications because of side effects, it is helpful if you can explain to your doctor that this is the reason and ask that this be noted in your records.
  • Social Security really likes it when you are seeing a specific kind of doctor. Here’s how you can tell if your doctor is The Right Kind of Doctor. If your doctor is not the right kind of doctor, you should still be able to pass reviews as long as you are still disabled and your condition has not improved, but you may have to go through some extra steps.
What Else You Need to Know
  • If you are disabled, you may be able to get more food stamps. Make sure to tell your SNAP caseworker that you have a disability and ask her to apply the disability policies to your case. Also, if you live with other adults, you may be able to get much higher food stamps by keeping your food separate - purchasing, storing and preparing your food separately from other adults. This will work for any adult except your spouse. Again, you must tell your caseworker you are doing this.
  • If you applied for SNAP food stamps and got turned down, please try the two things listed above. You may be able to qualify now! However, if you are on SSDI, you may need to wait until you have spent your backpay.
  • If you ever begin working, it is important to notify Social Security. Notify them in writing and keep a copy of your notification. Send it by certified mail and keep the receipt or bring it to the office and get a receipt. If you ever run into problems, you can use this receipt to prove the problems were not your fault.
  • You may receive letters or phone calls from Ticket to Work or back-to-work programs. Don't be freaked out if this happens. They are not targeting you. These are sales calls. These agencies make money by signing people up for their programs. If you have recovered and your goal is to work your way towards going back to work full-time and getting off disability, some of these programs can be really helpful and can get you all kinds of extra benefits. On the other hand, if you are still disabled and need to stay on disability, proceed with care and caution, these programs may not be as good as they sound.
  • Sometimes Social Security accidentally gives someone too much money. This most often happens when someone starts working, or changes their living situation. Many months (or years) later Social Security figures out their mistake and asks for some money back. If you are ever sent an overpayment notice and Social Security wants some money back, you don't have to just accept it. You have two options: One: You can appeal. Two: You can request an overpayment waiver. If neither option works, you can continue to appeal more. Please look online to learn more about both options. Feel free to message me if you want to talk it through.
  • Some people choose not to tell others that they are on disability, unless it is someone that they know well and really trust. People are afraid that someone might file a false report on them, especially if they have an invisible illness and don't "look disabled". Many people also choose to be careful with what they post on facebook, twitter and social media. This is a personal decision. Do what you feel is best.
  • If you ever run into a problem with your benefits, always appeal. As long as you are still disabled, you should be able to get this sorted out if you are willing to be patient and persistent. You should always appeal at least twice: the first time is called "reconsideration hearing" and the second is called "appeal hearing". The big mistake people make is not appealing. Always appeal! You will be able to get it figured out eventually. Feel free to message me if you want to talk it through.
  • As mentioned above, if you are poor, in most cases, you should be eligible for at least $733/month. If you are getting less than this, there may be a way to correct the problem. Feel free to contact me if you'd like help sorting this out. Or you can Learn more here.
Special Notes for People on SSI and Medicaid

Your check may go up or down if your living situation or income changes. It is really helpful to know What Can Make Your Check Go Up or Down

From time to time, Social Security may contact you to do an SSI update interview. In some states they do this every few years, and in some states, it seems like they never do it! Please see the sections above about SSI interviews.

If you are receiving full SSI, then Social Security requires that you always pay your own rent, utilities and food. If you are staying with a friend or family member, you can pay rent for the room you are staying in and you can pay your share of the utilities. This is very important, or you could wind up owing money back.

You can accept gifts, but not money. Someone can give you a present or they can pay for something like your phone or medical bills. However, they cannot give you money, and cannot pay for your food, rent, or utilities.

It is very important that your bank account always be under $2,000 by the end of the month ($3,000 if married). If it is ever over this amount for one month, make sure to spend it down before the end of the next month. The longer it stays this way the worse the problem gets.

If you think you will receive an inheritance or money at any point in your life, look into setting up a Special Needs Trust ahead of time. This will allow you to receive money without losing your SSI or Medicaid.

If you became disabled before the age of 26, there is a new kind of trust called an ABLE trust that should be available soon. It is intended to be less expensive and easier to set up than a regular Special Needs Trust.

If you ever receive money, try to either put it in a special needs trust, buy a house, or spend it all in the month it was received. You may lose your benefits for one month, but as long as you spend it all and have less than $2,000 in the bank by the end of the month, your benefits will return next month. This will work for SSI and for medicaid healthcare. The rules are different for long-term care medicaid, medicaid nursing homes, or medicaid homecare waivers.

If you became disabled before the age of 22... Remember what I am about to tell you. You may need to remember this for a really long time. Write it down somewhere and look at it every year. Some day you will be able to make your check go up. You can do this when one of your parents dies, retires, or becomes disabled. As soon as this happens, call social security and tell them you want to start collecting benefits for "Adults Disabled Before Age 22". For many people, this will make their check go up a LOT. It will not happen it automatically, you must request it. If you get married then this will not work.


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Comments

what is the difference between Medicare & Medicaid? Is one better than the other? i.e., is there one that more doctors prefer?
Do you have to apply to SSI & SSDI separately? which is more difficult to get?
thanks for writing this up.
 
thank you for writing!

blog comments don't seem to allow tagging.... so I am posting are response here:

http://forums.phoenixrising.me/index.php?threads/everything-no-one-every-told-me-when-i-got-on-disability-ssi-ssdi.45544/
 

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