When your child receives a diagnosis of Autism Spectrum Disorder (ASD) you may feel overwhelmed with exactly what that means for you, your family, and most importantly your child. Consider this a resource to help navigate the path forward from a financial perspective.
There are many resources available to families raising children with ASD and we have highlighted some of the more common programs available. While having an ASD diagnosis does not automatically qualify your family for all of these programs, it certainly indicates the need to explore what may be available.
SSI is a government program for families with few monetary resources
and is available to children with ASD.
How to file for SSI: Certain companies exist to help families with autistic children file for SSI and disability lawyers are likely to be able to help.
Families can also apply directly with the government online. The Social Security Administration also recommends visiting their Child Disability Starter Kit before applying.
There are certain income and asset limits when applying for SSI:
Asset Limits:
Asset limits for adults applying for children are generally $4,000 for individuals and $5,000 for couples – common assets include cash in bank accounts and vehicles – for a list of exceptions see here.
Income Limits:
Income limits can vary by family circumstances but you can
check to see if your family’s income falls below these limits at this link here.
It is the responsibility of the parent(s) to provide medical evidence that their children conform to the Social Security Administration’s definition of “disability.” Children with ASD must meet the following criteria to qualify for SSI:
In addition, children must have documented deficits in at least two of the following(1):
Children who qualify for SSI will have to periodically requalify even if their medical diagnosis is not expected to change.
Families with children who qualify for SSI are automatically qualified and enrolled in Medicaid (2).
Children with ASD may at some point transition to SSDI or DAC. These programs do not have means based testing like SSI does. These programs do however set a maximum on the amount of money that can be earned through employment by the disabled beneficiary.
SSDI is a benefit provided funded through social security taxes on wages. As such it is based on the applicant’s work history. Some children with ASD may go on to work and earn money in which case they will have a work history and may be eligible for SSDI benefits. Others however may never work. In these cases, such applicants may apply for Disabled Adult Child (DAC) benefits which are based on the parent’s earnings record.
If a parent is living, a DAC recipient receives approximately 50 percent of the parents benefit amount and up to 75 percent if the parent is deceased. Depending on the amount of parent’s Social Security retirement or disability benefit, you may be eligible for Supplemental Security Income (SSI) in addition to DAC benefits (3).
This is a program that helps families pay for a variety of services that may be required to care for their child. Such services include:
This program requires that families have been qualified for medicaid and that the child meets certain disability criteria. It should also be mentioned that this program has a waitlist and families are encouraged to apply as soon as they possibly can for services (4).Children who qualify for SSI will have to periodically requalify even if their medical diagnosis is not expected to change.
Families with children who qualify for SSI are automatically qualified and enrolled in Medicaid (2).
Inheritance issues: If qualifying and staying qualified for SSI or other needs based programs is important, it’s important to make sure the beneficiary (i.e. the child with ASD) is not listed as a beneficiary on any accounts or for property passed down through wills.
This will ensure the child is not inadvertently disqualified from the program for exceeding asset or income limits. Typically, families will draft a Special Needs Trust to receive property or funds to be used for the benefit of the child. This will keep the property or funds from disqualifying
the child.
A special needs trust is a trust designed to house property and funds to be used for the benefit of the child ensuring they aren’t disqualified from needs based government programs.
Typically, an estate planning attorney can be used to draft such documents. If keeping a child qualified for needs based programs is not a concern, or if the amount of funds or property to be set aside is not very great, a special needs trust may not be needed.
Achieving a Better Life Experience (ABLE) Accounts are very similar to 529 college savings accounts or HSAs in that they allow for tax deferred contributions (like HSAs), grow tax free (like 529s and HSAs) and can be used tax free for qualified expenses (like 529s and HSAs). Also, just like 529s, most states sponsor their own ABLE account.
Qualifying expenses include almost anything to maintain or improve the quality of life of the beneficiary—education, housing, transportation, assistive technology, employment training, financial management, healthcare—to name just some.
Families can contribute up to $18,000 (2024) per beneficiary. There is also a $450,000 lifetime limit for contributions to an ABLE account. The first $100,000 of funds do not count against an individual for SSI purposes. Amounts over $100,000 will impact SSI qualification.
To qualify for an ABLE account your child must meet the following: Disability was present before the age of 26; and
OR
You must self-certify that your child has one of the following:
OR
AND
