Everything No One Ever Tells You About Living on Social Security Disability

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Here’s a long list of everything that nobody tells you about living on Social Security disability.  Please share this list with anyone else you know who is living on disability. It can save you a lot of time, money and heartache.

AFTER APPROVAL

First six months: If you were approved recently, please take a look here: Everything No One Ever Tells You After You Get Approved

Back pay: If you have not yet spent all your back pay, please take a look at the section on back pay in the link above.

HOMEBOUND

If you are homebound or have difficulty leaving the house, check out many services and ideas here: How to Be Homebound.

YOUR DISABILITY CHECK

Marriage, divorce, separation, kids, relationships, and widows can have a big impact on your Social Security check: How Does My Love Life Affect My Disability Check?

If your life or finances change, you may need to report this to Social Security: What Do I Need to Report to Social Security?

Most people are eligible for at least $735/month (In California it is at least $890). If your disability benefits are lower than this and don’t know why, it may be worth looking into: How Come My Check is So Low?

There are several different forms of disability. Double check you are getting everything you are eligible for: Different forms of disability

DOCTORS

If you are having difficulty finding a doctor, practitioner or medical supplier that takes your insurance, both Medicaid and Medicare have online directories of doctors and medical suppliers.

It’s a good idea to check in with your doc about their retirement or relocation plans. Plan ahead so you will always have a good doctor.

Don’t stop now! It’s incredibly important to keep having Good Doctor Visits That Create Accurate Records. This will help you if you are still disabled when your disability comes up for review.

GETTING HELP

If you are in need of a wheelchair, mobility scooter, walker, or other medical equipment, check out How to Get Medical Equipment

If you need grab bars, wheelchair ramps, larger doorways, other home modifications, check out How to Get Home Modifications

There are many transportation programs that may help you: Medicaid taxis, paratransit, wheelchair services, disability discounts, airline assistance, medical transport, and more. Check out Transportation for Spoonies

If you have an invisible illness that makes walking difficult, don’t be afraid to get a disability parking placard. It can be a big help and is very easy to do. Primrose Get a Disability Parking Placard

AIDES & CAREGIVERS

If you need someone to  help care for you, you may be able eligible for a home aide program. Services including caregivers, nurses, physical therapists, meals delivered, and sometimes home visits from doctors.

If you need assistance with both personal care (bathing, eating, dressing, mobility, etc), and household care (shopping, cooking, cleaning) you may be eligible for a state home care program. Success stories from readers: How I Got Approved for a Home Aide

If your condition is severe and a friend, loved one or family member is providing personal care for you, you may be able to get funding for the person who is caring for you. This program is designed to keep people out of nursing homes. It is designed for people with “nursing home level of need.”

If you have a live-in aide or live-in caregiver, you may be eligible for some of these Extra Special Benefits for People with Live-In Aides.

If you have an aide or caregiver funded through a Medicaid program, check out these: Extra Benefits for People in Medicaid Waiver Programs

WORKING

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 are on SSI, there is also a smartphone ap you can use to report wages. If you ever run into problems, you can use this receipt to prove the problems were not your fault.

There are a bunch of other things you might like to know if you are working or considering working: How to Work Without (Too Much) Trouble

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 getting people to join their programs and go off disability. If you are recovered and would like to go off disability and go back to work, you may want to contact them. They can help.

FINANCIAL SURVIVAL

If you have debt, you may have some options. Learn more about Credit Cards, Medical Bills, Debt Collectors & Disability Checks

You may especially want to take a look at this guide for Social Security regulations and debt: How To Protect Your Social Security Check

If you have student loans, please read this immediately: How To Escape The Crushing Weight of Student Loans

There are special rules for food stamps for people with disabilities. You may be eligible for more food stamps, or qualify for food stamps even if you were turned down in the past. How to Get Enough Food Stamps to Actually Eat

Don’t learn this the hard way. Here’s How To Get a Free Phone That Doesn’t Suck

If you are poor or low-income, there are about a million more things I would like you to know. Please look here: How to Be Poor in America

HOUSING

If you are looking for cheaper rent or better housing options, check out: A Long, Long, Long List of Places You Can Call if You are Seeking Affordable Disability Housing

Section 8 Housing is the key to financial survival and stability for many people people with disabilities. Section 8 Guide for the Plucky and Disabled

If anyone tells you that you can’t get Section 8, or there is no available affordable housing, don’t listen. Be like Dandelion: Dandelion Gets Nice, Affordable Housing QUICKLY

HUD Section 8 has housing dedicated to people who are elderly or disabled. You can apply even if you are young. Quality varies, but some readers here have found housing that is safe, clean, nice, quiet, disability accessible and super affordable this way: How to Find Yourself a Nice, Affordable HUD Apartment (for People with Disabilities)

If you are already in subsidized housing, or you are in the process of applying, check out these: Extra Special Benefits for People with Disabilities. For Section 8, USDA, and some other forms of income-based housing.

ME & CFS

If you have Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, here’s a few tools and services that might really help you out: How To Save Spoons

REVIEWS

Every so often you will receive a medical review to determine if you are still disabled. It will usually happen every 3, 5 or 7 years. How to Be Prepared for a Continuing Disability Review

If you don’t know when your next disability review will be, you can call and ask then to read you what date is listed in the computer. The date listed in the computer may be accurate, but sometimes reviews can be late (by years).

The Social Security regulations are designed so that it is much easier for a person to pass a disability review than it is to get approved in the first place. However, if you are still disabled, it is important to continue to see a doctor and document your condition. Here’s a few Important Social Security Doctor Regs

Most reviews are approved without problem. If your run into problems: How to Appeal a Continuing Disability Review

QUESTIONS

If you don’t know the difference between SSI and SSDI, now would be a good time to learn, so the rest of this page makes sense: How to Understand the Difference Between SSI and SSDI Without Making Your Head Explode

Many people think they know if they are on SSI or SSDI, but it turns out to be wrong. Please double check, it can cause a lot of problems if you are following the wrong regs: How to Tell What You’re On

If you have a Social Security question you cannot get a good answer to, post it below, or check out: How to Escape the Information Black Hole

SSI ONLY

From time to time you will be contacted for an SSI interview or PERC. How to Handle an SSI Interview

If you are on SSI, please please please learn all the SSI regs you need to know. It will save you a world of heartache down the road.

You especially need to know this rule: How Much Rent to Pay on SSI

It is totally possible to survive on SSI. Not easy, but possible. A lot of super important info here: How to Survive on SSI

See all these other folks who did it! “How I Get By On SSI”

If you first became disabled before the age of 22, learn more about Adult Disabled Child Benefits

SSDI ONLY

If you are on SSDI, hopefully you have already done this, but just in case…. You can collect extra benefits for your kids (including kids who don’t live with you) and sometimes for the parents of your kids. Please make sure to sign your kids up. Some people lose many thousands of dollars this way.

If you are on Medicare, you may have a waiting period before the Medicare starts. During this time period, you might be eligible for Medicaid. If that doesn’t work, check out: How to Get to the Doctor When You Can’t Get to the Doctor and How To Be Broke & Medicated

Once your Medicare starts, you may be charged a lot of co-pays for medical visits, plus your disability check will be lowered by about $100 per month to pay Medicare premiums. Don’t worry, you have options. How to Escape Medicare Fees

PLAN AHEAD

Make sure to request and keep copies of all your own medical records. You want full medical records with treatment notes (not what appears online). Doctor’s offices will not keep your records forever and sometimes a practice can move or close or purge old files. Some people lose their records this way. How to Collect Your Records

Ask your doctor her plans for retirement or relocation. This will give you time to plan ahead so you can find a good new doctor and don’t have a gap in treatment (Social Security will look to see that you are in regular treatment).

If you move, it is super important to give Social Security your new address and confirm that it is updated in their system. If you come up for disability review and the paperwork is sent to the wrong address, you could get cut off and it may take months to get your check started again.

TROUBLESHOOTING

If you ever run into a problem with your benefits, always appeal. Appealing is always better than starting a new application. If you are still disabled, you should be able to get this sorted out if you are willing to be patient and persistent. There are at least two appeals you can do: the first time is called “reconsideration hearing” and the second is called “appeal hearing”. The biggest mistake people make is not appealing. Always appeal and keep appealing

If you believe that Social Security is not correctly following a policy, please contact your congressperson.

Sometimes Social Security accidentally gives someone too much money. Then they want some back! This is called overpayment. How To Respond When Social Security Tells You That You Owe Money Back

As you probably have already figured out: Social Security sometimes says weird things on the phone. If you call Social Security and they tell you something that does not sound right, that may be because it is not right. Double check.

Here’s a few sentences you can say that sometimes magically turn a “no” into a “yes” What to Say When Someone Tells You “No” or “Not Possible” or “You Don’t Qualify”

If you have a problem with your disability reviews: How to Appeal a Continuing Disability Review

If you run into some other kind of problem: How to Solve Your Social Security Problems

If you are on SSI and have too many resources: How to Handle If You Are Over the SSI Resource Limit

The National MS Society has an excellent booklet about legal rights for people with disabilities: Know Your Rights.

SOCIAL

Many people who are homebound or have difficulty leaving the house, find support online. Here’s a list of 26 Great Facebook Groups (Plus a Few Other Things)

You don’t have to leave your bed to be a great activist: How to #Resist Without Using All Your Spoons.

Adapt is an amazing group of people with disabilities who organize for social change.

While you are here, why not check out our fantastic Spoonie video festival, where you can immeasurably improve your life just by watching. The Sleepy Girl ME Video Festival

If you are looking to make a big and interesting change in your life, learn more about How to Join an Intentional Community

Some people choose not to tell others that they are on disability, unless it is someone that they know well and really trust. 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.

When you are disabled or homebound, the people in your house matter a LOT. Sometimes those are the only people you see! Here’s How to Find Wonderful Housemates & Caregivers

Many movie theaters, parks, and recreational programs will allow a disability caregiver to accompany you for free. In many cases, all you have to do is ask.

Brilliant tips for getting out and about: Sunflower Goes to a Concert, a Theater, and a Football Game and Sunflower Goes on a Trip

FUNDRAISERS

Many people with chronic illnesses start online fundraising to help pay medical or life expenses. Ironically, this can cause you to lose your Medicaid, Food Stamps, SSI, Medicare Savings Programs, utilities assistance, or subsidized housing. In some cases, there are safe ways to fundraise. Please take a look: How to Fundraise Without Losing Your Benefits

SOMEDAY

Try to remember these two things in case they ever happen to you:

If your spouse (or ex-spouse) dies, you are eligible for Widow’s benefits at age 50. Usually it is age 60. But you get them early! Contact SSA and request this.

If you were first disabled before the age of 22 (no matter what age you are now), when one of your parents dies, retires or becomes disabled, you may become eligible for Adult Disabled Child Benefits. Contact SSA and request this.

If you have children at any point, makes sure to sign them up for dependent’s benefits. (SSDI only). Dependent benefits (including kids who don’t live with you)

SUPPORT ANIMALS

Many people with disabilities find it helpful to have an assistance animal. There are two kinds of assistance animals: service animals and emotional support animals. Service animals are trained and emotional support animals are not trained. Service animals are legally allowed to go places where a support animal may not be allowed. Assistance animals are considered “medical expenses” by some agencies. For example, in some housing programs having an assistance animal will cause your rent to go down. Learn more: Rosemary Gets an Emotional Support Animal


Tell Us More

Got good ideas to add to this list? Please comment below. Also: Please let us know if any links stop working.

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Robin Mead

29 thoughts on “Everything No One Ever Tells You About Living on Social Security Disability”

  1. after 9 years I still have no diagnosis which would enable some sort of disability.. this seems the first step, and I hear 90% of us are undiagnosed like myself. I just was denied the NIH clinical trial for same reason, no concrete diagnosis.. I am now seeking ME docs in CO if anyone knows any.. medicaid doc would be great.. or anyone.

    Like

    1. ME specialists are few and far between.

      If you feel you have ME, you could try bringing info on ME to your regular doc and ask them to review it with you. Some people are diagnosed that way 🙂

      Also, it may be helpful to try checking all your medical records from every doctor you have been to. You may discover they have written down some diagnostic codes you are not aware of.

      Like

    2. Locate this doctor Henderson. He is in Colorado.The publication I cite below was very interesting though only abstract available on pubmed — about youngsters diagnosed for depression who actually had ME/”cfs” and were helped with anti-viral medicine. He should know of others in Colorado such as doctors treating the disease.

      Valacyclovir treatment of chronic fatigue in adolescents.
      Henderson TA.
      Adv Mind Body Med. 2014 Winter;28(1):4-14.
      PMID: 24445302
      Similar articles

      Another paper of his done in 2015, about brain radiology, showed him at the address below. Good luck.
      3The Synaptic Space, Centennial, CO, USA

      Like

  2. He is on ssdi who do I call that can answer questions. Particularly medical insurance. His current part d. Will stop covering his meds in Jan.?

    Like

  3. I have been blind for my adolescent years but my onset date was when I was 20 years old. I was approved for SSI and have been getting SSI ever cents. My mother went on disability for years later after I was a pro diversify. I was not told nor was I move towards the disability adult child benefit. Am I still eligible for the last 13 years?

    Like

    1. Hi Richard,

      I was not sure from your question… are you still on SSI now?

      If you are, then definitely YES. It will depend on your mom’s income, but it is possible you could get a higher check, plus a big backpay check 🙂

      Like

  4. What if you were approved for SSI, and SSD at the same time, then told you weren’t eligible for SSI. Are they required to still pay the SSI approval retroactive, regardless of being disapproved after the fact?

    Like

        1. If your SSDI payment is too high….

          Then any backpay month where you get both SSI and SSDI, you won’t get to keep both. They will subtract the SSI amount before sending you the final check. (If you’ve already gotten the final check, you should be able to keep it unless a mistake was made).

          If there are any months where you qualified for ONLY SSI, then you get to keep the SSI.

          Like

  5. I was approved last April. My disability benefit date stars 4/15. I’m on medicare but denied benefits because they thought I was still getting workcomp. I sent the form back last June proving I haven’t been getting workcomp. It’s been 8 months without benefits. How long do they take to straighten stuff out ? Ugh !

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  6. Right now I live with someone and pay my share of everything. My half of rent is $400. I’m on a waitlist for subsidized housing. From the information I’m finding online, it looks like when I move into subsidized housing (my rent will be 30% of my income- $225), that I will lose my SNAP benefits because my rent will be less. Is this true?

    Like

    1. Hi Deb,

      This sounds correct to me. When your rent goes down, your SNAP goes down.

      You might not lose it completely, but it might go down some (you will still come out ahead) 🙂

      There are some special regulations that may make your rent lower and your snap higher:

      food: https://howtogeton.wordpress.com/2017/01/26/how-to-get-enough-food-stamps-to-actually-eat/

      rent:
      https://howtogeton.wordpress.com/2017/08/14/how-to-calculate-rent-in-hud-section-8-and-usda-housing/

      Like

      1. Thanks for the reply. Unfortunately you confirmed what I figured as far as snap benefits going down. Another unfortunate is that when I move, I’ll have 2 more bills every month that I don’t have now. And if I’ve lost my snap, the money I’d have used for those bills will now have to go for food. ☹️

        Like

  7. Would you happen to know the starting amount of too high SSDI that would eliminate SSI ?

    Does SSDI truly have a max monthly payment regardless of the amount of salary I earned on average prior to becoming disabled?

    Example: if Joe yearly salary average was $105,000 per year for 20 years prior to becoming disabled, will his max SSDI payment only be $2,665 per month? (which the $2,665 is the state of Tennesse max from what I have read but not verified)

    Thank You !

    Like

    1. Hi tony,

      Yes, there is a max benefit for SSDI.

      The cutoff for SSI depends what kind of income and if there is other income in the household. As a general rule, in most states, if SSDI is over $750, the person can’t get SSI.

      It is $900 in California.

      Like

  8. Will I get SSI back pay for the months that I was going through the process when I didn’t have any income coming in ?

    Any ideal what the max SSDI payment is ?

    Like

    1. I believe it is around $2,600.

      In most cases if your SSDI is too high, you will not get SSI backpay, but there is a loophole where sometimes someone gets SSI backpay for five months. It depends when social security sets your onset date so it’s not possible to know ahead of time.

      Like

  9. I just got my fully favourable decision letter on 4/12/18. My onset date is taking me back to when I first filed for disability which was 2/22/2013 was the first time I was turned down. After the 1st time I refiled again on 9/15/2015 which has lead to this fully favourable decision and an onset date all the way back to 6/22/2013. I have not worked since 2/2013 and I was wondering how they will work those work credits so that I will draw. If you could explain this I believe I might be able to stop getting so sick because I am awaiting my award letter (which needs to hurry) but in the mean time i been checking the online My SSA Account and it is stating that I do not have enough work credits…. Any insight on your thought might help me sleep at night until i get this award letter.

    Like

    1. Hi Shannon, If your decision letter says the onset date is 2013, that should be correct 🙂

      From what you wrote, I am not sure if the onset date is before or after your first denial. If it’s before it means the person making the decision decided to reopen your old case – that would mean a lot of backpay.

      My understanding is: It does not matter if you have enough work credits now, just if you had enough at the time of your onset date. If you feel unsure if you had enough credits at that time, you can call Social Security and ask “when is my date last insured?” If you were insured at the time of your onset date, you should be eligible.

      Congrats. Hope this helps.

      Like

  10. In 2010 to 2013 I received ssdi 3 surgeries for herniated disc after a work related injury. After a hearing in front of judge. In 2013 I went back to the same job, I informed ssdi and no longer received payments. In 2015 I went back out due same injury and had a spinal cord stimulator implanted. I also was diagnosed with ptsd because of the original incident. My lawyer applied me for once again ssdi. And have a hearing coming up in front of a different judge. My employer has since retired me on injury ( ny state disability retirement ) my question is does it help my case that I once had ssdi and tried to go back to work?

    Like

    1. Hi Tap,

      I’m not aware of any way that this would make a difference – according to the SSA policies.

      Of course, you never know what happens in the mind of a judge, it could increase your credibility in the judge’s mind.

      If you are able to collect all your documents from your state disability retirement (any doctor’s letters or medical forms), and submit that to SSA, that could certain help.

      I hope it goes great for you. ❤

      Like

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