Financial Guide and Resources for Families With Autistic Children

Autism spectrum disorder (ASD) is a neurodevelopmental disorder that affects individuals across all racial, ethnic and socioeconomic groups. Its prevalence has significantly increased over the last few decades, with the Centers for Disease Control and Prevention noting that approximately 1 in 36 children are diagnosed with ASD. The impact of autism extends well beyond the individual — it profoundly influences entire families, affecting emotional, social and financial dynamics.

Federal aid, local programs and other benefits are available to help families manage autism-related expenses. Early and proactive use of financial planning tools can also significantly ease the financial strain, helping families secure a supportive future for their autistic children.

A study by UC Davis health economists published in 2015 projects ASD-related medical, nonmedical and productivity losses in the U.S. to reach $461 billion by 2025. Costs may vary widely depending on several factors, such as the severity of the disorder, the presence of co-occurring conditions and the specifics of insurance coverage. Knowing the direct and indirect expenses involved can help you plan financially for the present and future so you can support your child's needs.

Managing ASD incurs a variety of direct expenses that significantly impact family budgets. These costs range from specialized therapies to medical treatments and support equipment. Here's a detailed breakdown of the most significant direct costs:

Indirect expenses associated with ASD encompass a broad range of costs that are not directly related to medical care but are crucial for supporting the child's developmental and daily needs. Here are some of the most common and important expected indirect costs that you should budget for:

Families navigating the financial complexities of ASD can utilize resources for support. Across the U.S., various federal, state and local programs, alongside nonprofit and charitable distributions, provide necessary financial relief. These resources can substantially reduce families' economic strain by covering costs associated with essential services that are not always fully insured.

Some notable federal programs include Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI) and Medicaid waivers. Families can visit the respective program websites or local social security offices to apply for these programs. When applying, include documentation about your child's impairment diagnosis and its impact on your everyday lives. Expect variable processing times and be prepared to challenge any initial denials.

Supplemental Security Income (SSI) provides a monthly payment to individuals who are aged, blind or disabled, including children with autism. To qualify, families must demonstrate financial need, as SSI targets low-income individuals. As per the current guidelines, the maximum monthly payment is $914 for an individual and $1,371 for a couple. Additionally, in most states, children eligible for SSI automatically qualify for Medicaid. The issue with this avenue is that parental income and assets are “attributed” to the child’s income and assets until they reach the age of 18. This makes most children of middle-class households ineligible.

Social Security Disability Insurance (SSDI) offers benefits based on a parent's Social Security earnings record. If a child with autism becomes an adult and is dependent on their parent's earnings before turning 18 or the parent is receiving Social Security benefits or has passed away, SSDI may apply. Benefits continue as long as the individual remains disabled. Detailed guidance on SSDI can be found in the Benefits for Children With Disabilities booklet available through the Social Security Administration. This is a much more advantageous outcome for parents of children less capable of managing their activities of daily living.

Medicaid waivers, or 1915(c) Home and Community-Based Services, allow individuals with developmental disabilities to receive care in their homes or communities instead of institutional settings. These waivers cover various services, including medical treatments, respite care and in-home support, varying significantly by state. Depending on state-specific regulations, children may qualify for these waivers without meeting traditional Medicaid eligibility criteria.

To access a Medicaid waiver, families must navigate their state's application process, which can differ in requirements and available benefits. Another thing to remember is that the name of a waiver could differ depending on your state. For instance, some states offer what is known as the "Katie Beckett waiver" as an option. Caregivers pursuing this option will also find it difficult to overcome the income and asset test for their autistic child, as parental income and assets are attributed to the child until the child turns 18. Often, caregivers will choose one or the other to give up an income stream to offset overall costs. This complex math should be done with a financial planner and health care professional.

ABLE accounts (529A accounts) allow families to save for disability-related expenses without losing eligibility for government programs. Introduced through the Achieving a Better Life Experience (ABLE) Act of 2014, these accounts have features similar to 529 college savings plans but are designed to meet the needs of individuals with disabilities.

Contributions to ABLE accounts grow tax-deferred, and withdrawals for qualified disability expenses are tax-free. The funds in these accounts are exempt from the $2,000 asset limit for SSI recipients. ABLE account holders can shield up to $100,000 in post-tax dollars from the $2,000 Medicaid asset test. Additionally, the money can be spent on various needs, including education, health care, transportation and housing.

To maximize benefits from an ABLE account, contribute up to the annual limit of $18,000, and if your state offers tax deductions for contributions, take advantage of them to reduce state tax liabilities. It is critical that the contributions made to an ABLE account are made directly to the account and not to the recipient. If such dollars are given directly to the recipient, then they may be kicked off of Medicaid for personally surpassing the asset test. Contributions made directly to an ABLE account are not considered income or assets attributable to the beneficiary of the ABLE account.

Tax benefits are structured to reduce taxable income and directly decrease tax liabilities, ensuring parents have more resources to dedicate to their child's care and well-being.

Parents can claim medical expenses related to autism care on their federal income tax return. Expenses that exceed 7.5% of your adjusted gross income are deductible. For instance, if your adjusted gross income is $60,000, you can deduct medical expenses that surpass $4,500. Eligible medical expenses include medications, doctor's fees, medically necessary foods, travel expenses to and from health care visits and therapy materials.

The Child and Dependent Care Credit is particularly beneficial for parents who incur costs for child care while working or seeking employment. This tax credit is valuable as it directly reduces the amount of tax owed rather than just lowering taxable income. There is no age limit for dependent children with disabilities, making it applicable for families caring for children with autism of any age.

Parents can claim up to $3,000 per dependent for child care, with a maximum of $6,000 for two or more dependents. This credit covers expenses related to child care, after-school programs and day camps. Keep detailed records of all expenditures and consult with a tax professional to ensure you maximize this benefit.

Parents and caregivers can use pre-tax dollars to pay directly for medical expenses for a loved one with autism using a dependent flexible spending account (FSA) or health savings account (HSA). Contributions made to such accounts are based on pre-tax dollars. Therefore, those contributions are not taxed and reduce your overall taxable income. Similarly, the caregiver will see reduced FICA tax and social security contributions as their gross income has been reduced.

Take note that only W-2 employees can open an FSA if they are enrolled in a low-deductible plan through their employer and their employer offers an FSA option. If you have a high-deductible, high-premium plan, both you and your child can enroll in an HSA. This can save you even more money and even serve as an alternative retirement savings vehicle. Keep in mind that HSAs are counted within the asset test for Medicaid.

There are grants and scholarships designed to help manage costs associated with care for children with autism. These highly competitive grants are usually designated for particular expenses and paid directly to the service providers. Before pursuing a grant, consider all available options, as some may offer more comprehensive benefits than others. Here are some notable grants and scholarships you can consider applying for:

Autism Cares Today offers funding to families across the United States, with grants ranging from $100 to $5,000 issued quarterly. This organization prioritizes families with multiple autistic children, military ties and those with incomes under $100,000. The grants cover expenses such as ABA therapy, speech and occupational therapy, biomedical testing, nutritional supplements, assistive technologies, safety equipment and costs associated with social skills groups and disability summer camps. However, they do not cover transportation, hyperbaric oxygen therapy or personal expenses, like rent and utilities.

Every state has a nonprofit dedicated to the needs of people and families with autism. Many of these organizations offer scholarships and stipends. For example, the Autism Society of Iowa provides scholarship money to caregivers, autistic people and autism advocates. Check your state’s autism society and see their available resources. Reach out to the society directly for specific details and information. These organizations also typically offer free group support sessions and networking options for young adults and professionals on the spectrum. Additionally, individuals in these organizations are highly knowledgeable about resources available at the local level.

The Dream Foundation is a 501(c)3 organization specializing in respite care for parents of children with disabilities. The organization’s mission is to preserve spousal and caregiver health by providing trips and vacations for caregivers. All grant recipients receive free dependent care while they are away. This can be extremely beneficial to families that have had to make exceptional sacrifices for their children.

The United Healthcare Children's Foundation provides financial relief to families whose insurance does not fully cover their child's medical needs. The grant amounts vary, and children under 16 who are covered by a commercial health plan are eligible. The foundation specifically aids families whose annual income fits within set thresholds, which depend on family size. Covered expenses include treatments, equipment and services prescribed by medical doctors but exclude social skills therapy, electronic devices and summer camp programs.

The Asperger/Autism Network of New England (AANE) collaborates with the Doug Flutie Jr. Foundation and private donors to provide grants ranging from $50 to $500 to individuals with Asperger's syndrome and low support needs autism in New England. The grants help cover costs such as occupational therapy, adaptive swimming lessons, puzzles and games, respite care, books, sensory integration therapy and music classes. However, AANE does not cover medical or travel expenses.

Joey's Fund | Hope Fund Family Grant Program, part of the Doug Flutie Foundation, typically funds organizations but offers individual grants to families in New England needing financial assistance for autism-related expenses. These grants can be up to $2,000, or $3,000 for families with more than one member with autism, and cover expenses such as respite care, recreational programs, educational evaluations, computer software, communication needs, therapies, camp tuition and safety-related items. They do not cover medical and travel expenses.

Diverse state and local assistance programs exist, offering financial support to families of children with autism, including the following:

HCBS waivers are federally funded but administered at the state level and designed to help cover the cost of services for individuals with various disabilities, including autism. These waivers allow for flexibility in receiving care in home or community settings rather than institutional ones, with availability and specifics varying significantly from state to state. It is important to have these documents reviewed by a specialized professional, such as an attorney or special needs attorney, before submission.

Many states have enacted laws requiring private insurance companies to cover autism services. The scope and depth of coverage are dictated by state regulations, which can greatly affect the accessibility and affordability of autism treatments like therapies and medical care. These rules also typically only apply to state-regulated insurance plans, not ERISA-covered ones. ERISA-covered plans are health plans that are “self-funded” and offered through an employer; the employer is the payer of last resort. Make sure to talk to your HR professional before seeking services.

Families managing autism care can find ways to cover and reduce costs, ensuring immediate financial relief and long-term savings. These involve negotiating medical bills, taking advantage of your insurance coverage and using HSAs.

The costs associated with having a child with autism can be significant. Fortunately, there are steps you can take as a parent to navigate these expenses, including:

Although state mandates have standardized some aspects of autism care coverage, private health insurance plans still vary widely in how they cover autism services. Whether purchased independently or provided through an employer, these plans often have nuanced rules regarding coverage limits, copays and deductibles.

To optimize private health insurance for autism care, be proactive and well-informed about your policy details. Here's a list of strategies to help you maximize your health insurance benefits:

FSAs and HSAs offer valuable tax advantages that can significantly reduce the cost of autism care. These accounts effectively stretch your health care budget by allocating pre-tax income to cover medical expenses.

Here are essential tips to effectively manage your FSAs and HSAs, ensuring you get the most out of these accounts for autism-related expenses.

These resources offer a wealth of localized services and useful insights to supplement your journey navigating autism's financial landscape and connect you with a supportive community:

• Autism Speaks: Provides a comprehensive nationwide directory of services and programs for individuals with autism and their families, helping them find local schools, health care services and therapeutic programs.
• Autism Source Database: Managed by the Autism Society, this extensive database offers reliable information about local and national resources for autism support.
• Wrightslaw: Specializes in special education law and advocacy, providing resources that help families understand the educational rights and services available to children with autism.
• Easterseals: Offers a wide range of resources focusing on assisting individuals with disabilities, including autism, to find local help and support services.
• MyAutismTeam: An online social network where parents of children with autism can connect and share experiences, supported by a community of over 140,000 members.
• Autism Support Network: Provides a resource guide for financial aid and assistance, offering a comprehensive approach to navigating the financial aspects of autism care.