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Social Security for Individuals with Autism

The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that provide assistance to people with disabilities. While these two programs are different in many ways, both are administered by the Social Security Administration and only individuals who have a disability and meet medical and financial criteria may qualify for benefits under either program.

Social Security Disability Insurance:
Pays benefits to you and certain members of your family if you are “insured,” meaning that you worked long enough and paid Social Security taxes.

Supplemental Security Income:
Pays benefits based on financial need.

Benefits for Children with Disabilities

Supplemental Security Income

A child younger than age 18 may qualify for Supplemental Security Income (SSI) payments if they have a medical condition or combination of conditions that meets Social Security’s definition of disability and if his or her income and resources fall within the eligibility limits. Social Security will consider the income and resources of the child, as well as family members living in the household. If the income and resources for the household are more than the amount allowed, the application for SSI will be denied.

Providing Information

When you apply for SSI payments for your child, Social Security will ask for detailed information about their medical condition and how it affects their daily activities. They will also look for information from the child’s doctors, teachers, therapists and other professionals who have information about your child’s condition.

SSI Disability Reviews

If your child starts to receive SSI, law requires Social Security to review their medical condition from time to time to verify that they still meet the criteria for disability. This review will happen at least every 3 years for children under the age of 18.

What Happens When Your Child Turns 18

At 18, Social Security considers your child an adult and different rules are used to determine if an adult can get SSI disability payments. Starting at age 18, SSI no longer will consider the income and resources of family members (except for a spouse) when deciding whether an adult meets financial limits. If your child is already receiving SSI, Social Security will review their medical condition when they turn 18. If your child was not eligible for SSI before their 18th birthday because of financial limits, they may become eligible at 18 and should apply again.

Social Security Disability Insurance Program (SSDI)

The SSDI program will pay benefits to adults who have a disability that began before they turned 22 years-old. This is considered a “child’s” benefit because it’s paid on a parent’s Social Security earnings record. To receive this benefit, the child must have a parent who is receiving Social Security retirement or disability benefits, or must have died and worked enough to qualify for Social Security. Children who receive SSDI as a minor will continue to receive benefits as a disabled adult “child” as long as they meed the disability rules for adults.

Benefits for Adults with Disabilities

Supplemental Security Income (SSI)

An adult 18 years or older may qualify for SSI if they have a qualifying disability and meet the financial eligibility requirements. At age 18, Social Security no longer considers parent income and resources when determining financial eligibility, so a child who was previously denied may now qualify based on their income and resources alone. Even if the child resides with their parents or other family members, their income and resources are no longer considered. They will still need to show proof of disability and supporting documentation from doctors, teachers, therapists or other professionals who provide services and supports.

Social Security Disability Insurance (SSDI)

An individual can receive SSDI payments two different ways as an adult. First, if they were disabled before the age of 22, they are able to receive SSDI as a “disabled child” under their parents benefits (see above for more information on qualifying as a disabled child). Second, an individual may qualify for SSDI if they have worked a job and earned enough credits by paying into Social Security. In that case, the individual would be collecting on their own Social Security earnings record instead of a parent’s benefit and their SSDI payment would be calculated based on the individuals earnings.

What You Need to Know When You Get Social Security Disability Benefits

About Your Benefits

When Your Payments Start

Under the law, your payments cannot begin until you have been disabled for at least five full months. Payments usually start with your sixth month of disability.

When Social Security tells you that you will be receiving disability benefit payments, the notice explains how much your disability benefit will be and when your payments start.

Note: If your family members are eligible for benefits based on your work, they will receive a separate notice and booklet.

How Long Payments Continue

Generally, your disability benefits will continue as long as your medical condition has not improved and you cannot work. Benefits will not necessarily continue indefinitely. Because of advances in medical science and rehabilitation techniques, many people with disabilities
recover from serious accidents and illnesses. Social Security will review your case periodically to make sure you still are disabled.

You are responsible for telling them if:

  • There is any change in your ability to work;
  • You return to work; or
  • Your medical condition improves.

If You Disagree with a Decision

If you have any questions about your payment amount or any other information sent to you, please contact Social Security. If you disagree with a decision they make, you have the
right to appeal the decision.

Your request must be in writing and delivered to any Social Security office within 60 days of the date you receive the letter containing the decision.

If you still are not satisfied, there are further steps you can take. Ask for Your Right To Question The Decision Made On Your Claim (Publication No. 05-10058).

You have the right to hire an attorney or anyone else to represent you. This does not mean you must have an attorney or other representative, but Social Security will work with one if you wish. For more information about getting a representative, ask for Your Right To Representation (Publication No. 05-10075).

When and How Your Benefits are Paid

Social Security benefits are paid each month. Generally, the day on which you receive your benefit depends on the birth date of the person on whose work record you receive benefits. For example, if you receive benefits as a retired or disabled worker, your benefit will be determined by your birth date. If you receive benefits as a spouse, your benefit payment date will be determined by your spouse’s birth date.

Electronic Payments

If you apply for benefits on or after May 1, 2011, you must receive your payments electronically. If you did not sign up for electronic payments when you applied, Social Security strongly urges you to do it now.

Direct deposit is a simple, safe and secure way to receive your benefits. Contact your bank to help you sign up. Or you can sign up for direct deposit by contacting Social Security.

Another option is the Direct Express® card program. With Direct Express®, deposits from federal payments are made directly to the card account. It’s quick and easy to sign up for the card. Call the toll-free Treasury Electronic Payment Solution Contact Center at
1-800-333-1795. Or sign up online at www.GoDirect.org. Also, Social Security can help you sign up.

A third option is an Electronic Transfer Account. This low-cost federally insured account lets you enjoy the safety, security and convenience of automatic payments. You can contact Social Security or visit the website at www.eta-find.gov to get information about this program, or to find a bank, savings and loan or credit union near you offering this account.

Returning Benefits Not Due

If you receive a check that you know is not due, take it to any Social Security office or return it to the U.S. Treasury Department at the address on the check envelope. You should write void on the front of the check and enclose a note telling why you are sending the check back. If you have direct deposit and receive a payment you should not have gotten, call or visit your Social Security office. They will tell you how you can return it.

If you knowingly accept payments that are not due you, you may face criminal charges.

Paying Taxes on Your Benefits

Some people who get Social Security have to pay taxes on their benefits. About one-third of  current beneficiaries pay taxes on their benefits. You will be affected only if you have substantial income in addition to your Social Security benefits.

  • If you file a federal tax return as an “individual” and your income is more than $25,000, you have to pay taxes.
  • If you file a joint return, you may have to pay taxes if you and your spouse have a combined income that is more than $32,000.
  • If you are married and file a separate return, you will probably pay taxes on your benefits.

For more information, contact the Internal Revenue Service

For Individuals who are Blind, Deaf or Hard of Hearing

You can choose to receive notices in one of the following ways:

  • Standard print notice by first-class mail;
  • Standard print notice by certified mail;
  • Standard print notice by first-class mail and a follow-up telephone call;
  • Braille notice and a standard print notice by first-class mail;
  • Microsoft Word file on a data compact disc (CD) and a standard print notice by first-class mail;
  • Audio CD and a standard print notice by first-class mail; or
  • Large print (18-point size) notice and a standard print notice by first-class mail.

To select one of these options, please:

If you would like to receive notices in another way, please call 1-800-772-1213 or visit your local Social Security office so they can begin processing your request. If they are unable to approve your request, they will send you the reason in writing and tell you how to appeal
the decision.

If you have a question about a Social Security notice, you may call 1-800-772-1213 to ask for the notice to be read or explained to you.

Cost-of-Living Adjustments

Each January, your benefits will increase automatically if the cost of living has gone up. For example, if the cost of living has increased by 2 percent, your benefits also will increase by 2 percent. If you receive your benefits by direct deposit, they will notify you in advance of your new benefit amount. If you receive your benefits by check, they will include a notice explaining the cost-of-living adjustment with your check.

When You Reach Full Retirement Age

If you are receiving Social Security disability benefits, your disability benefits automatically convert to retirement benefits, but the amount remains the same.

If you also receive a reduced widow(er)’s benefit, be sure to contact Social Security when you reach full retirement age so that they can make any necessary adjustment in your benefits.

Note: For more information about full retirement age, ask for Retirement Benefits (Publication No. 05-10035).

Other Benefits You May be Able to Get

Supplemental Security Income (SSI)

If you have limited income and resources, you may be able to get SSI. SSI is a federal program that provides monthly payments to people age 65 or older and to people who are blind or disabled. If you get SSI, you also may be able to get other benefits, such as Medicaid and food stamps.

For more information about SSI, ask for Supplemental Security Income (SSI) (Publication No. 05-11000).

Medicare

After you receive disability benefits for 24 months, you will be eligible for Medicare. You will get information about Medicare several months before your coverage starts. If you have permanent kidney failure requiring regular dialysis or a transplant or you have amyotrophic
lateral sclerosis (Lou Gehrig’s disease), you may qualify for Medicare almost immediately.

Help for Low-Income Medicare Beneficiaries

If you get Medicare and have low income and few resources, your state may pay your Medicare premiums and, in some cases, other “out-of-pocket” medical expenses such as deductibles and coinsurance. Only your state can decide if you qualify. To find out if you
do, contact your state or local welfare office or Medicaid agency. Also, more information is available from the Centers for Medicare & Medicaid Services by calling the Medicare, toll-free number, 1-800-MEDICARE (1-800-633-4227). If you are deaf or hard of hearing, you may call TTY 1-877-486-2048.

Supplemental Nutrition Assistance Program (food stamps)

You might be able to get help through the Supplemental Nutrition Assistance Program (SNAP), formerly known as food stamps. Visit www.fns.usda.gov/snap to find out how to apply. For more information, ask for Food Stamps And Other Nutrition Programs (Publication No. 05-10100) or Food Stamp Facts (Publication No. 05-10101).

Benefits for Children

If you are receiving benefits on behalf of a child, there are important things you should know about his or her benefits.

When a child reaches age 18

A child’s benefits stop with the month before the child reaches age 18, unless the child is disabled or is a full-time elementary or secondary school student and unmarried. About three months before the child’s 18th birthday, you will get a letter explaining how benefits can continue. They also will send the child a letter and a student form.

If your child’s benefits stopped at age 18, they can start again if he or she becomes disabled before reaching age 22 or becomes a full-time elementary or secondary school student before reaching age 19. The student needs to contact Social Security to reapply for benefits.

If your 18-year-old child is still in school

Your child can receive benefits until age 19 if he or she continues to be a full-time elementary or secondary school student. When your child’s 19th birthday occurs during a school term, benefits usually can continue until completion of the term, or for two months following the 19th birthday, whichever comes first.

You should tell Social Security immediately if your child marries, is convicted of a crime, drops out of school, changes from full-time to part-time attendance, is expelled, suspended or changes schools. You also should tell them if your child has an employer who is paying for your child to attend school.

In general, a student can keep receiving benefits during a vacation period of four months or less if he or she plans to go back to school full time at the end of the vacation.

If your child is disabled

Your child can continue to receive benefits after age 18 if he or she has a disability that begins before age 22. Your child also may qualify for SSI disability benefits.

If you have a stepchild and get divorced

If you have a stepchild who is getting benefits based on your work and you divorce the child’s parent, you must tell Social Security as soon as the divorce becomes final. Your stepchild’s benefit will stop the month after the divorce becomes final.

Reviewing Your Medical Condition

All people receiving disability benefits must have their medical conditions reviewed from time to time. Your benefits will continue unless there is strong proof that your condition has improved medically and that you are able to return to work.

Frequency of reviews

How often your medical condition is reviewed depends on how severe it is and the likelihood it will improve. Your award notice tells you when you can expect your first review.

  • Medical improvement expected—if your condition is expected to improve within a specific time, your first review will be six to 18 months after you started getting disability benefits.
  • Improvement possible—if improvement in your medical condition is possible, your case will be reviewed about every three years.
  • Improvement not expected—if your medical condition is unlikely to improve, your case will be reviewed only about once every five to seven years.

What happens during a review?

You will receive a letter telling you that they are conducting a review. Soon after that, someone from your local Social Security office will contact you to explain the review process and your appeal rights. The Social Security representative will ask you to provide information about your medical treatment and any work that you may have done.

A team consisting of a disability examiner and a doctor will review your file and request your medical reports. You may be asked to have a special examination. Social Security will pay for the examination and some of your transportation costs.

When a decision is made, they will send you a letter. If they decide that you still are disabled, your benefits will continue.

If Social Security decides you no longer are disabled and you disagree, you can file an appeal. If you decide not to appeal the decision, your benefits will stop three months after they decide that your disability ended.

For more information, ask for a copy of Your Right To Question The Decision To Stop Your Disability Benefits (Publication No. 05-10090).

Helping You Return to Work

After you start receiving disability benefits, you may want to try working again. There are special rules called “work incentives” that can help you keep your cash benefits and Medicare while you test your ability to work. For more information about the ways Social Security can help you return to work, ask for Working While Disabled— How We Can Help (Publication No. 05-10095). More detailed information about work incentives can be found in the Red Book (Publication No. 64-030). Also visit the website, www.socialsecurity.gov/work.

Preparing for a Case Review

Keep all of your school records

The Social Security Administration (SSA) needs information from your school when it reviews your case. Keep these papers all together in a safe place.

Visit your doctors and therapists regularly

SSA needs proof that you are still disabled when you turn 18. It is very important that you get treatment from your doctors regularly so that SSA will have the information it needs. If you have depression or anxiety be sure you are getting treatment for it and taking any medication your doctors prescribe.

Talk to your OVR representative

The Office of Vocational Rehabilitation (OVR) can give you training and help you apply for jobs after you graduate from high school. You can also usually keep your SSI benefits until you finish any program you do with OVR. Talk to someone at school about how to get involved with OVR.

Tell SSA if you move

SSA will send you letters when it reviews your case. It is important for them to have your current address so you can respond quickly and avoid missing deadlines.

What You Must Report

Basic Information

Please notify Social Security promptly by phone, mail or in person whenever a change occurs that could affect your benefits. We explain the changes you must report on pages 11-18.

Family members receiving benefits based on your work also should report events that might affect their payments.

Information you give to another government agency may be provided to Social Security by the other agency, but you also must report the change directly to us.

Note: If they find that you gave false information on purpose, your benefits will be stopped. For the first violation, your benefits will be stopped for six months; for the second violation, 12 months; and for the third, 24 months. Also, if you do not report a change, it may result
in your being paid too much. If you are overpaid, you will have to repay the money.

Have your claim number handy when you report a change. If you receive benefits based on your own work, your claim number is the same as your Social Security number followed by the letters “HA.” If you receive benefits on someone else’s work, your claim number will be the other person’s Social Security number followed by a different letter. The award notice you received when your benefits started shows your claim number. You also should be prepared to give the date of the change, and, if different, the name of the person about whom the report is made.

If You Work While Receiving Disability Payments

You should tell Social Security if you take a job or become self-employed, no matter how little you earn. You’ll need to let them know how many hours you expect to work and when your work starts or stops. If you still are disabled, you will be eligible for a trial work period, and you can continue receiving benefits for up to nine months. Also, tell us if you have any special work expenses because of your disability (such as specialized equipment, a wheelchair or even prescription drugs) or if there is any change in the amount of those expenses.

If You Receive Other Disability Benefits

Social Security benefits for you and your family may be reduced if you also are eligible for workers’ compensation (including payments through the black lung program) or for disability benefits from certain federal, state or local government programs. You must
tell them if:

  • You apply for another type of disability benefit;
  • You receive another disability benefit or a lump-sum settlement; or
  • Your benefits change or stop.

If You are Offered Services Under the Ticket to Work Program

Social Security may send you a Ticket that you can use to obtain services to help you go to work or earn more money. You may take the Ticket to your state vocational rehabilitation agency or to an Employment Network of your choice. Employment Networks are private organizations that have agreed to work with Social Security to provide employment services to beneficiaries with disabilities. Your participation in the Ticket Program is voluntary and the services are provided at no cost to you.

If You Move

When you plan to move, tell Social Security your new address and phone number as soon as you know them. Also please let us know the names of any family members who are getting benefits and are moving with you. Even if you receive your benefits by direct deposit, they must have your correct address so they can send letters and other important information to you. Your benefits will be stopped if we are unable to contact you. You can change your address at our website, www.socialsecurity.gov/changeaddress.html.

Be sure you also file a change of address with your post office.

If You Change Direct Deposit Accounts

If you change financial institutions or open a new account, be sure to say that you want to sign up for direct deposit. You also can change your direct deposit online if you have a personal identification number and a password. Or, Social Security can change your direct deposit information over the telephone. Have your new and old bank account numbers handy when you call. They will be printed on your personal checks or account statements. It takes about 30-60 days to change this information. Do not close your old account until after you make sure your Social Security benefits are being deposited into the new account.

If You are Unable to Manage Your Benefits

Sometimes people are unable to manage their money. When this happens, Social Security should be notified. They can arrange to send benefits to a relative or other person who agrees to use the money to take care of the person for whom the benefits are paid. The person who manages someone else’s benefits is called a  “representative payee.” For more information, ask for A Guide For Representative Payees (Publication No. 05-10076).

Note: People who have “power of attorney” for someone do not automatically qualify to be the person’s representative payee.

If You Get a Pension From Work

If you start receiving a pension from a job for which you did not pay Social Security taxes—for example, from the federal civil service system, some state or local pension systems, nonprofit organizations or a foreign government— your Social Security benefit may be reduced. Also, tell Social Security if the amount of your pension changes.

If You Get Married or Divorced

If you get married or divorced, your Social Security benefits may be affected, depending on the kind of benefits you receive.

If your benefits are stopped because of marriage or remarriage, they may be started again if the marriage ends.

If you get your own disability benefits then your benefits will continue.

If you get your spouse’s benefits then your benefits will continue if you get divorced and you are age 62 or over unless you were married less than 10 years.

If you get disabled widow’s or widower’s benefits (including disabled divorced widow’s and widower’s benefits) then your benefits will continue if you remarry when you are age 50 or older.

If you get any other kind of benefits then generally your benefits will stop when you get married. Your benefits may be started again if the marriage ends.

If You Change Your Name

If you change your name—by marriage, divorce or court order—you need to tell Social Security right away. If you do not give this information, your benefits will be issued under your old name and, if you have direct deposit, payments may not reach your account. If you receive checks, you may not be able to cash them if your identification is different from the name on your check.

If You Care for a Child Who Receives Benefits

If you receive benefits because you are caring for a disabled worker’s child who is younger than age 16 or disabled, you should notify Social Security right away if the child leaves your care. You must give the name and address of the person with whom the child is living.

A temporary separation may not affect your benefits if you continue to have parental control over the child, but your benefits will stop if you no longer have responsibility for the child. If the child returns to your care, they can start sending your benefits to you again.

Your benefits usually stop when the youngest, unmarried child in your care reaches age 16, unless the child is disabled.

If you become the parent of a child after entitlement (including an adopted child) let Social Security know so that they may determine if the child qualifies for benefits.

When a child who is receiving benefits is adopted by someone else, let them know his or her new name, the date of the adoption decree, and the adopting parent’s name and address. The adoption will not cause the child’s benefits to stop.

Criminal Activity

If you have an outstanding warrant for your arrest

You must tell them if you have an outstanding arrest warrant for any of the following felony offenses:

  • Flight to avoid prosecution or confinement;
  • Escape from custody; and
  • Flight-escape.

You cannot receive regular disability benefits, or any underpayments you may be due, for any month in which there is an outstanding arrest warrant for any of these felony offenses.

If you are convicted of a crime

Tell Social Security right away if you are convicted of a crime. Regular disability benefits or any underpayments that may be due, are not paid for the months a person is confined for a crime, but any family members who are eligible for benefits based on that person’s work may continue to receive benefits.

Monthly benefits or any underpayments that may be due usually are not paid to someone who commits a crime and is confined to an institution by court order and at public expense. This applies if the person has been found:

  • Not guilty by reason of insanity or similar factors (such as mental disease, mental defect or mental incompetence); or
  • Incompetent to stand trial

If you violate a condition of parole or probation

You must tell Social Security if you are violating a condition of your probation or parole imposed under federal or state law. You cannot receive regular disability benefits or any underpayment that may be due for any month in which you violate a condition of your probation or parole.

Citizenship Issues

If you leave the United States

If you are a U.S. citizen, you can travel to or live in most foreign countries without affecting your Social Security benefits. There are, however, a few countries where they cannot send Social Security payments. These countries are Azerbaijan, Belarus, Cuba, Cambodia, Georgia, Kazakhstan, Kyrgyzstan, Moldova, North Korea, Tajikistan, Turkmenistan, Ukraine, Uzbekistan and Vietnam.

Let Social Security know if you plan to go outside the United States for a trip that lasts 30 days or more. Tell them the name of the country or countries you plan to visit and the date you expect to leave the United States.

They will send you special reporting instructions and tell you how to arrange for your benefits while you are away. Be sure to notify them when you return to the United States.

If you are not a U.S. citizen and you return to live in the United States, you must provide evidence of your non-citizen status in order to continue receiving benefits. If you work outside the United States, different rules apply in determining whether you can get your benefits. For more information, ask any Social Security office for a copy of Your Payments While You Are Outside The United States (Publication No. 05-10137).

If your citizenship status changes

If you are not a U.S. citizen, let Social Security know if you become a U.S. citizen or if your non-citizen status changes. If your immigration status expires, you must give new evidence that shows you continue to be in the United States lawfully.

If a Beneficiary Dies

Let them know if a person receiving Social Security benefits dies. Benefits are not payable for the month of death. That means if the person died any time in July, for example, the check received in August (which is payment for July) must be returned. If direct deposit is used, also notify the financial institution of the death as soon as possible so it can return any payments received after death.

Family members may be eligible for Social Security survivors benefits when a person getting disability benefits dies.

If you are receiving both Social Security and Railroad Retirement benefits based on your spouse’s work and your spouse dies, you must tell Social Security immediately. You no longer will be eligible to receive both benefits. You will be notified which survivor benefit you will receive.

Additional Information and Resources

For general information regarding the Social Security and Supplemental Security Income disability programs visit:

Social Security

To apply for Social Security for both children and adults, access the starter kits here:

Disability Starter Kits

For information on qualifying for Social Security with a diagnosis of autism visit:

Autism and Social Security

For assistance with appealing a decision or legal issues obtaining or keeping Social Security visit:

Community Legal Services

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