Disability Benefits: Options for Adults with Autism

government benefits govt and community benefits transition transition planning Jun 04, 2024
Supplemental Security Income (SSI) for Adults with Autism and Developmental Disabilities

There are a variety of disability benefits for adults with autism spectrum disorder.  From financial help to housing opportunities to health insurance, there are different ways for autistic people to get the funding and support they need.  

 

Whether you are an adult with autism, a parent or family member of an autistic adult, or an educator looking to increase your awareness of disability benefits for your teen and young adult students, this blog post will give you an overview of available autism benefits,  eligibility for those benefits, and how an autistic adult might use the benefit.   

 

This blog post will cover possible autism benefits available to adults living in the United States. Most benefits require applicants to have a Social Security Number.  

 

My experience is specific to Illinois, as I supported families in understanding and accessing benefits for their young adults with autism. For guidance on the best sequence to pursue benefits when an individual turns 18 (or is older or younger) in Illinois, check out my free 18th Birthday Benefit Blueprint.  

 

 

 

General Eligibility Criteria for Benefits

An adult with autism must meet eligibility requirements to access a benefit. These requirements are typically quite specific, leaving little room for the 'benefit of the doubt.'  

 

When an individual decides to pursue the benefits available through a disability program, they must provide medical documentation and/or testing scores and results as proof of disability.  

 

To be clear, an autistic adult is anyone who is 18 years of age or older and has a formal autism diagnosis by a medical professional or psychologist.  While autism spectrum disorder falls under the developmental disability category,  it is a spectrum diagnosis, and individuals may not meet all the eligibility criteria of a program to be approved with just an autism diagnosis.   

 

Specifically, an individual may need to have an intellectual disability in addition to an autism diagnosis or show a high level of need in specific skill areas.  An intellectual disability is a Full Scale Intelligence Quotient (FSIQ) of 70 or lower.  Eligible individuals may also need to demonstrate or have documentation of needed support or assistance in specific activities of daily living (i.e., personal hygiene) or significant needs in multiple areas (i.e., emotional regulation, personal safety, and communication).  

 

If the individual received special education services while in school, reviewing the paperwork to locate the FSIQ may help confirm an intellectual disability.  A disabled adult without recent IQ testing can have their IQ tested as part of the application process for benefits described below (i.e., SSI).  

 

 

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Let's review disability benefits and autism spectrum disorder (ASD) definitions in general.  

 

 

Autism Spectrum Disorder Definition

The Diagnostics and Statistics Manual or DSM 5-TR, released in 2022, is a highly reputable testing manual and is often used by medical professionals, psychologists, social workers, and psychiatrists to diagnose autism.  The DSM categorizes Autism under developmental disability neurodevelopmental disorders and outlines the different ways it can present.  

Autism is defined as experiencing "persistent challenges with social communication and social interaction, specifically deficits in social-emotional reciprocity, nonverbal communication, and developing, maintaining, and understanding relationships, restricted and repetitive patterns of behaviors, interests, or activities such as stereotype or repetitive motor movements, use of objects, or speech, insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior, highly restricted, fixated interests that are abnormal in intensity or focus, hyper or hyporeactivity to sensory input or unusual interest in sensory aspect of the environment, and be present since early childhood and significantly impairs social, occupational, or other important areas of current functioning."  (American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed., Text Revision, American Psychiatric Publishing, 2022, p.56-57)

The DSM 5 also saw the removal of the Asperger syndrome term and identifies Autism Spectrum Disorders, or ASD, as an all-encompassing term.  

 

IDEA Definition of Autism

While most adults no longer receive services under IDEA disabilities act (which is the law Special Education services follows in public education), an individual MAY still receive some services through transition programming through age 22 years old (or a little older for some states).  

 

IDEA is the Individuals with Disabilities Education Act.  The following is IDEA's definition of autism:

(I) "Autism means a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.

(ii) Autism does not apply if a child’s educational performance is adversely affected primarily because the child has an emotional disturbance, as defined in paragraph (c)(4) of this section.

(iii) A child who manifests the characteristics of autism after age three could be identified as having autism if the criteria in paragraph (c)(1)(i) of this section are satisfied."

 

(Source, Individuals with Disabilities Act US Government Website, 2024)

 

It can be helpful to see how different IDEA defines autism versus how Social Security defines autism that qualifies for benefits...so keep reading.  

 

Social Security Definition of Autism

Social Security Administration has clear eligibility criteria for accessing Supplemental Security Income or SSI benefits.  One part of the eligibility requirements is the specific disability and the severity of that disability on a person's ability to complete activities of daily living and earn a living wage from a competitive job.  This POMS manual, also known as the SSA's blue book, has a Listing of Impairments.  While there are 14 different medical condition categories, from Cancer to Skin Disorders to physical impairments like Musculoskeletal Disorders and more, Autism is listed under Category 12: Mental Disorders.  

 

To be eligible for Social Security Disability Benefits, autistic individuals would need to "provide medical documentation that proves the following:

  • Qualitative deficits in verbal communication, nonverbal communication, and social interaction; and

  • Significantly restricted, repetitive patterns of behavior, interests, or activities.

        AND

  • Extreme limitation of one, or marked limitation of two, of the following areas of mental functioning (see 12.00F):

  • Understand, remember, or apply information (see 12.00E1).

  • Interact with others (see 12.00E2).

  • Concentrate, persist, or maintain pace (see 12.00E3).

  • Adapt or manage oneself (see 12.00E4)."

(Source- Social Security Administration, 2024)

 

Mental impairments that also fall under Category 12 include anxiety, intellectual disability, OCD, schizophrenia, and eating disorders, among others.  

 

 

Now that the different definitions have been outlined let's review the disability benefits available to adults with autism.  

 

Benefits for Adults with Autism

What is a Disability Benefit?

A disability benefit is money/funding, services, and supports that directly or indirectly improve or enhance a disabled person's life.  Money/funding includes monthly cash payments and funding from waiver programs to cover common daily expenses.  Services include health insurance, help with job training, and other cash payments.  Supports decision-making protection like the power of attorney/guardianship/supported decision making; caregiver help with daily activities like respite, and living options outside the home like housing, among others.  

 

 

1. Supplemental Security Income 

Supplemental Security Income, also known as SSI or Social Security Benefits, is a federal government financial assistance needs-based program that provides monthly cash payments to individuals who are unable to participate in 'substantial gainful activity.'  Substantial gainful activity can be generally described as the inability to obtain and maintain enough competitive employment to cover the cost of living due to a disability.  

The Social Security Administration manages the SSI program. 

 

Program Eligibility:

Those interested in applying should check the medical requirements in the POMS (aka the blue book) listing of impairments to confirm that their disability meets the eligibility requirements before going through the application process.   Even if the individual has a qualifying disability, like autism, expect to provide proof of their high level of need and required support.  It may be helpful to preview of the Adult Disability Report used by SSA to make the call about whether an individual's disability meets eligibility criteria.    

Speaking in very, very, very general terms, the application process for Social Security benefits, like SSI, looks like:

  1. Gather all necessary documentation (LINK)
  2. Complete application
  3. Wait will SSA's eligibility determinations staff review documentation, review the application, reach out and confirm the information that was shared with appropriate people, and make a determination.  
  4. Receive communication about whether the person applying was approved or denied
  5. Appeal denial, if appropriate

 

Necessary Documentation:

When applying for disability, the person who is applying will need to share medical documentation of their developmental disability with their local Social Security Office.   Gathering medical records, such as doctor's reports and testing results, and school records, such as special education documents and school psychologist reports and scores, with all the detailed information about the individual's autism diagnosis, is a key part of the application process.  Keep in mind that the more documentation that is shared with the application, the more information the SSA has to determine if the individual meets the criteria for disability benefits.  

The SSA determination department will take all information provided by the applicant and determine if their symptoms of autism meet the six bullet points of criteria listed above (LINK).  Therefore, the more information that can be provided, the better!   

Unfortunately, the denial rate for SSI disability benefit is very high.  After someone is denied a benefit, the appeals process may include requesting more medical evidence or testing the individual.  This testing is set-up and paid for by the Social Security Administration using 3rd party medical professionals, so their opinion is neutral.  

For SSI applications, if the individual is still in school or graduated recently, then school staff will be sent paperwork to complete from the SSA.  Staff most familiar with the individual will be able to share their professional perspective about their nonverbal communication and verbal communication skills, academic level, basic needs, social emotional needs, necessary support to complete activities of daily living, and more.  

Tip:  Can't locate the individual's special education reports and records?  If they are still in school or graduated semi-recently, contact the school for a copy of records.  They may still have physical copies of documents available for pick-up.  

An individual can contact their local Social Security Office for assistance with applying.  SSA office staff can also share what they consider acceptable documentation for proof of disability, such as medical evidence, age of onset, and supporting documentation.  SSA does provide this handy checklist as a reference.  

 Applying for SSI disability benefits changes when an individual turns 18 years old because the Social Security Administration will only consider the work history and income of the individual, not the household income (aka the income of parents or heads of household).  Specific to work history, if an individual has a strong competitive employment work history, meaning they have held a variety of well-paying jobs for long periods of time, this may show they can 'obtain and maintain employment' and may be denied based on their proof of capability.  A strong work record shouldn't deter someone from applying for benefits through the SSI program because SSA staff will do their due diligence to determine if the work record meets their standards for substantial gainful activity.  

 Since this benefit is also available to low-income families, if the adult with autism previously received SSI due to financial need, they may need to go through the application process to receive monthly payments on their adult profile.

 

 

Ways to Use This Benefit

The money from the financial support is sent via a monthly payment and must be spent on current needs.  The SSA can ask for receipts for purchases made with the money, so it is best to have a system for records.  A Representative Payee is someone who can assist in managing the monthly payments for a disabled adult.  

 

How Much is a Disability Check?

For 2024,  monthly SSI payments for one person can range from $608-$943, based on the individual's level of need, living situation, and a few other things.  Keep in mind that earned income, or money that the person earns from a paid job, would also make the payment smaller.  For example, if the person was eligible for the full $943 and earned $200 a month from a paid job, SSA would subtract $100 (which is half the amount of earned income from the job, the standard) from the SSI payment amount.  The person would then receive $843 SSI payment + $200 of earned income for a total of $1,043 in money for the month.  See how earning income from a paid job still allows the person to earn SSI benefits (and actually works in their favor)?  How does SSA know how much is earned from the paid job?  The person will need to report their income (and should, because it's the law) and will see slight fluctuations in their monthly benefits based on their reported income.  

 

Learn more about the SSI program $2,000 asset limit and how that impacts both the approval process, read the What You Need to Know When Applying for SSI blog post.  

 

 

Additional Information:

Be aware that SSI is notorious for having a high denial rate for initial applications for a variety of reasons.  Because of this, consider the appeals process as just a step in the application process.  

 

Different states (California, Hawaii, Michigan, Montana, Nevada, New Jersey, and Vermont) offer their own SSI benefits for residents in addition to the monthly payments they receive as part of the federal program. 

 

An individual can work and still receive SSI benefits.  Those interested in competitive employment should plan to report earned income to SSA on a monthly basis and keep all receipts for purchases made that support them being able to work, like special transportation fare receipts and medicine.  These costs, referred to as Impairment Related Word Expenses or IRWE, could help keep more of the SSI monthly payment while the individual works.  

 

If an individual is approved for SSI, they are automatically approved for Medicaid.  Some states automatically enroll individuals in Medicaid, and others require individuals to enroll manually.    

 

Money budgeted to pay for SSI benefits is tagged in the federal budget completely separately from Social Security taxes (what is taken out of our paychecks).   The Social Security Administration explains the difference between Social Security payroll taxes and SSI funds in the FAQ ‘HOW IS SSI DIFFERENT FROM SOCIAL SECURITY BENEFITS?’ 

 

For more information about SSI, read my 5 Things You Should Know When Applying for SSI blog post.  

 

 

  

 

2. Disabled Adult Child Benefit

Disabled Adult Child Benefit, or DAC, is another financial assistance option for disabled adults whose family members, parents, or primary caregivers retire or pass away and worked at a job where part of their paycheck went to Social Security.  

 

While SSI is the most well-known of the Social Security disability benefits, this is a financial assistance option parents of children with developmental disabilities may want to know about as they plan for the future. 

 

SSI is considered a 'payor of last resort' which means that other benefits that could pay someone who is eligible should be accessed first.  In the case of DAC, SSI would be a 'lower rank' benefit, and therefore, the individual should call their local SSA office to inquire about DAC benefits when a parent or primary caregiver passes or retires.  

 

 

Program Eligibility:

The autistic adult must be the disabled child (or grandchild or stepchild) of an adult who has worked and earned enough credits to qualify for Social Security benefits.  The child, although they are adult age, must be disabled before 22 years old, according to the Social Security Administration's listing of medical conditions.  The individual does not need to receive SSI to qualify, but if they are receiving SSI monthly payments, then DAC benefits may increase their payment amount.  The adult child must also be unmarried.  

 

There is no 'asset test' or limit to the bank account balance/property/etc the individual can have in their name to access this benefit.  

 

More information can be found on the Social Security Administration website.   

 

 

Ways to Use This Benefit

DAC benefits come with Medicare health insurance, which is often perceived as 'better' than Medicaid; however, Medicaid could serve as secondary insurance.  

 

The money received through DAC benefits can be used to cover any living expense, which is also different from SSI.  

 

 

Additional Information:

Accessing this benefit will not reduce the 'parents' benefit payment.  

 

 

 

 

3. Medicaid Health Insurance

Medicaid is health insurance for medical expenses for individuals with disabilities or who are considered to have low income.  If an autistic adult is approved for SSI, they are automatically approved for Medicaid because SSI recipients are considered a Mandatory Eligibility Group.  Mediciaid programs are managed by individual state governments based on requirements set by the federal government.  

 

 

Program Eligibility:

One way to seek Medicaid health insurance is to prove financial need; the other is to be approved for SSI.  This chart (updated for 2024) provides information on income limits by state.   A Google search of "(State)+Medicaid Income Limit" can also provide insight into the income limits specific to your state.  

 

Some states, Connecticut, Hawaii, Illinois, Indiana, Minnesota, Missouri, New Hampshire, North Dakota, Ohio, Oklahoma, and Virginia, require individuals to enroll in Medicaid as a separate step and may have more restrictive criteria. Specifically, Illinois automatically approves those who are approved for SSI but requires them to apply and enroll as a separate step.  

 

 

Ways to Use This Benefit

This benefit provides health insurance coverage for eligible individuals.   Medicaid can serve as a secondary insurance option for individuals who have another form of private insurance.  

 

For individuals who want to work and earn income but fear losing their Medicaid coverage, the SSA has created a Section 1619B to protect their Medicaid eligibility.  

 

For autistic individuals with very high needs, Medicaid waivers may cover some residential housing options.  

 

 

Additional Information:

The application for Medicaid may include other benefits, including food assistance (aka food stamps) and cash assistance. For example, in Illinois, the application for Medicaid is the same as for food assistance (SNAP benefits) and cash assistance (Temporary Assistance for Needy Families), so an autistic adult with enough need may be able to apply for more than one benefit when accessing Medicaid.

 

 

 

 

4. Social Security Disability Insurance Program & Medicare

Social Security Disability Insurance Program, or SSDI benefits, is a program for individuals who earn 'credits' through competitive employment.  Contrary to what the name suggests, SSDI is not a health insurance program but rather a program that offers monthly payments if an individual has a work history and earned enough income and credits through a competitive job.  The income received from a competitive job helps an individual to earn credits.  With enough credits, an individual is considered 'insured.' 

 

 

Program Eligibility:

A 'credit' is accrued by earning a specific amount of money from a competitive job.  An individual can earn four (4) credits per year.  Once an individual has enough credits, they qualify for SSDI.  The amount of credits they need to qualify for SSDI benefits is based on their age, and the older the individual is, the more credits they will need.  A chart for the number of credits by age can be found on the SSA website.  

 

 

Ways to Use This Benefit

Unlike SSI, purchases with SSDI money do not need to be tracked.    

 

An individual may qualify to receive both SSI and SSDI monthly payments.  

 

After 24 months (2 years) of receiving SSDI, the individual is eligible for Medicare coverage.  

 

 

Additional Information:

For adults who are considered a Disabled Adult Child (see section above) through retirement or death of family members, the benefits provided through DAC fall under SSDI.  

 

 

 

 

5. Home and Community-Based Services Medicaid Waiver Programs

The Home and Community Based Services Waiver (HCBS) provides funding to individuals to help cover the cost of support services associated with daily life.  

 

 

Program Eligibility:

Each state runs its HCBS program differently and uses different names to describe this benefit. Unfortunately, most have lengthy, years-long waitlists. Therefore, the earlier, the better when enrolling in the program (or waitlist) because time will pass regardless.  

 

  

Ways to Use This Benefit

Funding from the HCBS waiver may cover the cost of day programs, therapies (like speech therapy), respite services, recreational programming, housing assistance, home modification, among others.  

 

Depending on the state, HCBS waivers may allow the individual to remain in their family home while receiving different services and supports or may provide housing options in the community (outside the family home).  

 

 

Additional Information:

While this waiver is the most well-known housing support for individuals with autism disorder, there are other housing options, including Supportive Housing and residential housing covered by Medicaid.  

 

For autistic adults who don't qualify or take advantage of housing supports like the ones mentioned above due to ineligibility or limited options and who have limited income, there may be utility assistance programs to help cover the monthly utility bills, like electricity and heat.  While this isn't a benefit specifically for individuals with autism, an individual's disability may limit their workable hours and contribute to low wages, thus qualifying them for this option.  

 

 

 

 

6. ABLE Account

An ABLE Account (Achieve a Better Life Experience) is a bank account where money is kept when applying for benefits like SSI.    ABLE accounts are different than other checking/savings/investing accounts because they are approved as a 'safe zone' by the Social Security Administration.  

 

 

Program Eligibility:

Since SSI applicants want less than $2,000 in their name, having a safe zone to keep additional funds can help with eligibility.  

 

A map of individual ABLE account information by state can be found on the ABLE National Resource Center.  Use the Best Fit tool to find the best plan for the individual.  

 

While ABLE accounts are not offered in every state, you do not need to live in some states to open an account there.  For example, if you live in Illinois and like the terms of the Ohio ABLE accounts (ABLE account terms differ slightly by state), then you can open an account in that state because Ohio welcomes account holders who live outside of Ohio.  Kentucky, on the other hand, does not welcome non-Ketucky residents, so an Illinois resident could not open an ABLE account in Kentucky.  

 

An individual would need to meet the criteria for disability, according to the Social Security Administration, to open an account.  Meaning if an individual were approved for SSI, then they would be eligible to open an ABLE account.  However, the individual would need to be disabled before 26 years old.  While an individual can open an ABLE account after they turn 26 years old, they would need to have been disabled prior to turning 26.  If someone receives an autism diagnosis after the age of 26 and meets all the other criteria for being disabled, according to the Social Security Administration, then they would be eligible to open an ABLE account (because autism is not a disability that can occur due to age or accident, an individual is born with the disability, meaning they had autism prior to turning 26 years old).  

 

 

Ways to Use This Benefit

This is a benefit because it's a safe zone for keeping money that exceeds the $2,000 SSI limits that SSA imposes when someone begins receiving SSI monthly payments.  

 

Money being spent from an ABLE account must fall under the list of 'qualified disability-related expenses.'  Thankfully, the criteria are quite broad, as there is so much that can contribute to one's quality of life.

 

Depending on how the ABLE account is set up, it may be used as a checking account (with a debit card), savings account, investment account, or a mix of the three.  

 

Some state's ABLE accounts accept financial donations and monetary gifts, making this an easy and great way for loved ones to contribute to someone's ABLE account to celebrate a birthday, holiday, or big life event.  

 

 

Additional Information:

Families of autistic individuals can use an ABLE account as another option to save and invest money to reduce the financial burden of costs associated with daily care.  

 

For more information about this benefit option, visit the ABLE National Resource Center.  

 

 

 

7. Respite Care Vouchers

Respite is a break for primary caregivers from caring for an individual with a disability.   

 

 

Program Eligibility:

State and local organizations that offer respite vouchers and respite funding will have their own eligibility criteria, application process, and funding system.  

 

 

Ways to Use This Benefit

Respite can be provided in the home or community setting and cover just a few hours a month, multiple times a week, or overnight while caregivers are away.  Respite services can be customized to meet the unique schedule and needs of the individual and their family.  

 

Respite services can be used to provide care for an individual during those times when primary caregivers are either unable to be with the adult, like when they are at work, or when the caregiver needs a break to take care of personal things like doctor appointments or to spend time with others.  

 

Respite can also be used to expand an autistic adult's personal circle of support.  For example, they can engage in the same activities they do with their primary caregiver, like visiting their favorite restaurant or watching the movies.  A respite provider can also serve as a job coach who may assist the adult with a volunteer or paid employment shift.  

 

 

Additional Information:

While there are likely respite funding and respite voucher options for caregivers for adults with autism within each state, here is a map of states who receive Lifespan Respite Vouchers.

 

Families may need to post a job, interview, hire, and train respite providers to provide the care, as the respite voucher will only help offset the overall cost through upfront funding or reimbursement.  

 


 

 

Intellectual Disability vs Autism: The Difference Between

Jun 19, 2024

Understanding the Different Types of Special Needs Trusts

Jun 12, 2024

Disability Benefits: Options for Adults with Autism

Jun 04, 2024

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