Autism Social Security Benefits

The Social Security and Supplemental Security Income (SSI) disability programs are the largest of several Federal programs that provide assistance to people with disabilities. These two programs are different in many ways, and only individuals who have a disability and meet medical criteria may qualify for benefits under either program.

SSI is a program that pays monthly checks to the elderly, the blind and people with disabilities who don't own much or who don't have much income. If you get SSI, you usually get food stamps and Medicaid, too. Medicaid helps pay doctor and hospital bills.

Eligibility for Social Security Disability Insurance (SSDI) is based on a person's prior work history or their parents work history under Social Security, while SSI disability payments are made on the basis of financial need.

Supplemental Security Income (SSI)
payments for children with disabilities

A child may quality for disability benefits from birth to age 18 under the Supplemental Security Income (SSI) program. The SSI program is based on a lower family income allowable limit. Families who are eligible to receive Medicaid and/or Food Stamps may fall within the allowable income limit.

In the SSI program, a child becomes an adult at age 18, and different medical and non-medical rules are used to decide if an adult can get SSI disability payments. For example, the income and resources of family members do not count when deciding whether an adult meets the financial limits for SSI. Only the adult’s income and resources are considered.

If your child is already receiving SSI payments, the child’s medical condition is reviewed when he or she turns age 18. This review is usually made during the one-year period that begins on your child’s 18th birthday. The adult disability rules are used to decide whether your 18-year-old is disabled.

  • If your child was not eligible for SSI before his or her 18th birthday because you and your spouse had too much income or resources, he or she may become eligible for SSI at age 18.

Source: Supplemental Security Income (SSI) (Publication No. 05-11000)

Social Security Disability Insurance (SSDI)
benefits for adults disabled since childhood

An adult disabled before age 22 may be eligible for child's benefits if a parent is deceased or starts receiving retirement or disability benefits. The Social Security Administration considers this a "child's" benefit because it is paid on a parent's Social Security earnings record. It is not necessary that the adult child ever worked because benefits are paid on the parent's earnings record.

An adult child already receiving SSI benefits should still check to see if benefits may be payable on a parent's earnings record. Higher benefits might be payable, and entitlement to Medicare may be possible.

For a disabled adult to become entitled to this “child” benefit, one of his or her parents:

  • Must be receiving Social Security retirement or disability benefits; or
  • Must have died and have worked long enough under Social Security.

These benefits also are payable to an adult who received dependents benefits on a parent’s Social Security earnings record prior to age 18, if he or she is disabled at age 18. We make the disability decision using the disability rules for adults.

Your child does not need to have worked to get these benefits.

Source: SSA Publication No. 05-10026, January 2009, ICN 455360

Applying for SSI payments or SSDI benefits

You can apply for Social Security or SSI payments for your child by calling Social Security toll-free at 1-800-772-1213 or by visiting your local Social Security office.

If you are applying for SSI payments for your child, you should have his or her Social Security number and birth certificate with you when you apply. If you are applying for SSDI benefits for your child, please have your own Social Security number with you in addition to the child’s Social Security number and birth certificate.

Apply for Benefits Online and By Telephone

You may apply for Social Security Benefits online and directly over the telephone by appointment at their toll-free nationwide number: 1-800-772-1213 or 1-800-325-0778 (TTY only) from 7 a.m. to 7 p.m. Monday through Friday.

Call the Social Security Administration (SSA) at 1-800-772-1213 to arrange it. Tell the Representative you are unable to come to the office and would like to schedule an application appointment over the phone. Representatives usually do not ask why, but should someone ask... tell them your child has autism, a behavioral and neurodevelopmental disorder -- enough said.

An appointment date and time may be scheduled during this call, and a written confirmation sent to you in the mail. A Representative from SSA will contact you at the designated time and date to take your application.

Important information you will need to have handy is your family's annual income earnings, all social security numbers, your child's diagnosis and how their disability affects their daily life.

Focus on your child's daily needs and disability whenever applying for services.

During any discussions about diagnosis, be sure to convey how dependent your child is due to deficits in:

  • Self-Care Skills (bathing, grooming, dressing, eating, meal preparation),

  • Severe Behavior Problems (if any, and their frequency),

  • Medical Conditions (i.e. ADHD, seizures, behaviors i.e. tantrums, agression, smearing feces, or pica i.e. craving non-food items). Describe any medical conditions which may or may not require daily individualized attention from health care staff and treatments (i.e. IVIg, or daily injections).

Specify or describe your child's ability in the following areas:

Adaptive behaviors (i.e. communication, some or no expressive or receptive language),

Learning (particularly if IQ 75 or lower),

Mobility Skills (even if ambulatory - if your child needs assistance or training to increase capacity for moving about),

Capacity for Independent Living (i.e. is she completely dependent for all household activities),

Self-Direction (child demonstrates daily, weekly or monthly misbehaviors requiring individualized programming, i.e. home program or special school), and whether your child is dependent on others for management of their personal affairs within their community.

These categories are not specific to only applying for Social Security Disability Benefits, and may be used to establish their level of care for children with any disability.

Think of your child's challenges in these areas (and more if this applies), then write them down. Focus on your child's daily needs whenever applying for Social Security and other services. Once this information is written down, it can be used repeatedly, updating as necessary.

The application appointment may take anywhere from a few minutes to an hour. The Social Security Administration will then send you a letter stating whether your disability claim has been Accepted or Denied.

You may request a Hearing should you disagree with their Decision. Be sure to keep this Denial or Acceptance Letter in a safe, accessible place. Some states may require a Social Security Denial letter during the process of applying for a state Medicaid waiver or HCBS waiver.

Social Security benefits are usually awarded from the date of the first application. In some instances, benefits may also be calculated from the date disability first began. For children with autism disability may begin on their date of birth.

Social Security Publications

Social Security Benefits For Children With Disabilities is written for parents and caregivers of children with disabilities and adults disabled since childhood. It illustrates the kinds of autism SSI benefits a child might be eligible for and explains how disability claims are evaluated for children.

For more information and ideas on planning for your child with autism, visit our Autism Action Plan page.

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