Below is 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.
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.
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?
In some situations you might be able to get both SSI and SSDI: Can I Get Both SSI and SSDI?
There are several different forms of disability. Double check you are getting everything you are eligible for: Different forms of disability
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.
READER’S TIPS FOR GREAT DOCTORS VISITS
If going to the doctor exhausts you are worsens your symptoms or feels daunting or impossible: How to Go To The Doctor Without Crashing
Great ideas for planning ahead to help your doctor visits go well: Rebecca’s Amazing System for Organizing Medical Appointments
How other folks on disability handle their doctor’s appointments: How Talking to Your Doctor Can Help (or hurt) Your Disability Case
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
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.
PLAN TO LOSE MEDICAID
Many of our readers are shocked to find that their medicaid gets cut off at some point after they get approved for disability. Start planning now so you can have what you need in place when the time comes.
SSI – Don’t worry. Your Medicaid will continue
Disabled Adult Child Benefits – Your Medicaid should continue. If it doesn’t they have made a mistake. Look here for more details: Adult Disabled Child Benefits
SSDI – It is highly likely that your Medicaid will end. This may happen as soon as you are approved, or it may happen when your Medicare starts. Luckily, there are other Medicaid programs or other programs you may be able to apply for.
Tip: Don’t just contact medicaid and accept whatever they tell you or give you. Do your homework. There may be more programs you can apply for that they will not tell you about. How to Escape Medicare Fees
Please don’t wait til the last minute. It can take several months to apply and be accepted into a new medicaid program.
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
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
Every so often you will receive a medical review to determine if you are still disabled. How to Be Prepared for a Continuing Disability Review
You may be wondering: When Is My Next Social Security Disability Review?
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
SSI VS SSDI
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
You also might be wondering: What’s the Difference Between Medicare and Medicaid?
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
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.
More things that can raise or lower your SSDI Check: Good News and Bad News About Your SSDI Check
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
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.
If you discover problems in your records: How Do I Fix Problems in My Medical Records?
HEALTH INSURANCE THROUGH YOUR PARENTS
If you have complex medical needs not covered by Medicaid, sometimes there is a way to continue coverage under your parent’s health insurance, even when you are an adult.
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
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 or any other government agency is not correctly following a policy, please contact your congressperson.
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
Whatever happens, always remember the golden rule: Never Take No for an Answer Over the Phone
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
The National MS Society has an excellent booklet about legal rights for people with disabilities: Know Your Rights.
If you are considering moving to another state, check out this great article by Alison Hayes How will moving affect my disability benefits?
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)
Facebook groups for people with chronic illness and disabilities looking to find roommates or improve their housing scene. Plus resources for chemical sensitivities: Housing for Spoonies
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
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
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
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)
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 Guide to Emotional Support Animals
More stuff you may or may not what to know:
- How to Understand the Difference Between SSI and SSDI
- Complete Step by Step Disability Application Timeline
- How Will My Love Life Affect My Disability Check?
- Am I Seeing The Right Kind of Doctor?
- How Do Work Credits Work?
- What To Do If You Miss a Social Security Deadline
- Holding Out As a Married Couple (SSI Regulations)
- How to Navigate Disabled Adult Child Benefits
- How to Get Dependent Benefits
- The Social Security Five Step Process
- Can I Get Both SSI and SSDI?
- Am I On SSI or SSDI?
- How to Handle an SSI Interview (PERC)
- How to Stay Out of Hot Water with SSI
- What’s the Difference Between Medicare and Medicaid?
- What’s SGA? How Much Can I Earn While Working?
Tell Us More
Got good ideas to add to this list? Please comment below. Also: Please let us know if any links stop working.