The earlier your child's autism therapy begins, the better. Treatment can help your child build critical skills that may lead to an independent life.
Insurance often helps to pay for treatment. But what can you do when you don't have coverage?
If your child is younger than 3 years old, state programs may step in to cover the cost of assessment and treatment. If your child is older than 3, your child's school may offer some forms of autism treatment.
Insurance coverage is preferable. Families use benefits to pay for treatments that may be unavailable through free programs.
But if you don't have insurance coverage, there are other options available.
What Treatment Options Are Available?
Many forms of autism spectrum disorder (ASD) treatment exist. Unfortunately, they can be expensive. Families also face income loss due to autism treatment appointments.
The Agency for Healthcare Research and Quality says ASD treatments can be sorted into four categories:
- Behavior programs: Applied behavior analysis (ABA) therapy, cognitive behavioral therapy, and social skills programs fall into this group.
- Education and learning programs: Treatments given in schools are in this category. They help kids focus on learning and reasoning.
- Medications: Antipsychotics, selective serotonin reuptake inhibitors, stimulants, and more fall into this group.
- Other therapies: Acupuncture, massage, music therapy, neurofeedback, and more are part of this treatment group.
ABA therapy is considered the gold standard of treatment for people with autism. But your child may need other therapies in addition to ABA. Costs can mount.
In 2012, Autism Speaks announced that the annual cost of autism to society reached $126 billion. It's likely the cost has increased since then. Researchers included the cost of school interventions, government programs, and health care in their calculations.
Families face their own financial challenges. A child with ASD might need special education programs, tools like iPads, sensory-reduction tools, and more.
Parents also miss work as they shuttle their children to appointments. Researchers say families lose close to $30,000 per year on missed work alone.
Tight budgets mean tough choices. Sometimes, families can't pay for care. Researchers looked into this issue in 2019. Of families they interviewed, close to 45% said "no coverage" or "waiting lists" kept them from care.
Will Your State Help?
Most states have protections for children younger than 3 years old. Some have programs for older kids too.
Every state looks at ASD a little bit differently, and there's no national umbrella to force them into choosing one program over another. If you live in a state with generous benefits, you could get the help you need.
Generous states include:
- Nevada. The Autism Treatment Assistance Program (ATAP) provides funding for autism care for people younger than 20. Funds are delivered monthly.
- While the funds may not cover the entire cost of care, it may give families significant relief. ABA is covered under this plan.
- New Mexico. The Developmental Disabilities Supports Division offers a variety of services. ABA is not covered by this program, but respite and family services are covered.
Children younger than 3 years old are typically covered by state programs. Administrators want children diagnosed early, so they can get help before they slip behind in educational goals.
The Early Childhood Technical Assistance Center connects families with their state offices. Families can call, email, or visit the center in their state to find out how the programs work.
You may not know about the benefits in your state, and thinking about the research may exhaust you. Talk with your child's doctor about programs in the state. If that's not possible, reach out to your child's school counselor or administrator. These local resources have likely helped other families just like yours in the past.
Will Your Child's School Help?
Every child in the United States is entitled to a fair and equitable education. As a result, kids with ASD may get some forms of autism treatment while they're sitting in class each day. But often, the help they get isn't as robust as a family might like.
Autism Speaks says parents of kids with autism may access special education services. But to get them, parents may need to jump through some hoops. Your child might need to complete:
- Diagnostic play sessions.
- Developmental evaluations.
- Speech-language assessments.
- Behavior evaluations.
In some school districts, staffers conduct these tests. But they may have many kids to see, and that leads to long wait times.
In other school districts, parents must both schedule and pay for these tests. Some families just don't have the funds.
Reach out to other parents in your child's school. Connect with peers dealing with ASD, and ask them how they completed the district's requirements. If your child has a special education teacher, ask for tips on enrolling in the program.
These conversations connect you with others dealing with the same issues. They can also give you tangible answers.
Even with paperwork complete and enrollment well underway, your child may not get the therapy you hoped for. Experts explain that laws protect very young children. Doctors must identify those with disabilities and prepare them for school. But once a child ages out of these programs, coverage can be spotty.
Your child may spend individual time in a classroom with a skilled professional employing ABA techniques. But your child may only get a few sessions per week or none at all.
Be an advocate for your child. Speak up in school board meetings and talk about what your child needs. Spend time in the classroom when you can and take notes about what you see. Keep pressing until you see the changes you want.
Autism can put such a financial strain on your family that you qualify for state-run Medicaid programs. Enroll, and you could get coverage for your child's therapy.
Medicaid rules vary significantly from state to state. The U.S. Department of Health and Human Services (HHS) offers an online directory of state Medicaid websites. You can use this tool to find out more about coverage and eligibility in your state.
You can also apply for coverage through the health insurance marketplace. You provide information about your family's income and expenses. The system determines your eligibility for programs like Medicaid, HHS says. If you qualify, the state agency is notified and contacts you.
There's no shame in using these programs to pay for your child's care. If you're eligible, this could be the best way to ensure your family gets the help you need.
Other Funding Options
If you’ve exhausted these possibilities, you still have options.
Some treatment providers offer services on a sliding scale basis. Prices are set based on family income levels, making care more affordable to families in need.
Other providers may offer payment plans, so you can get the treatment your child needs now and then gradually pay off the bill over a longer period of time. Oftentimes, these payment plans are offered at a low interest rate, so the overall bill remains manageable even with a longer payment timeline.
Talk to potential providers about your options. ABA providers want to help as many families as possible. You may find they are willing to work with your financial situation, so your child can get therapy when it matters most.
Scholarships and grants are also worth exploring. Autism Speaks offers a robust listing of grants that are available to families dealing with autism.
Many grant programs are specific, offering funds to cover a particular need. Some programs cater to a specific demographic within the autism community, such as active-duty military families.
If your family doesn’t fit into any of these demographics, look for more general grants. For example, the CARE Grant Program offers grants to cover the cost of various autism treatments, including ABA therapy.
Work With Your Provider
Your ABA therapy provider can point you toward additional resources that can offset the cost of treatment.
Lack of insurance isn’t a dead end. You still have options that can help you cover the cost of therapy, so your child can get the help they need.
- Therapies for Children With Autism Spectrum Disorder. (September 2014). Agency for Healthcare Research and Quality.
- New Research Finds Annual Cost of Autism More Than Tripled to $126 Billion in the U.S. (March 2012). Autism Speaks.
- The Cost of Autism Spectrum Disorders. (2014). PLOS ONE.
- Treatment Patterns in Children With Autism in the United States. (March 2019). Autism Research.
- Disability Services: Autism Treatment Assistance Program. Nevada Department of Health and Human Services.
- Autism. New Mexico Department of Health.
- Part C Coordinators. (April 2020). Early Childhood Technical Assistance Center.
- Your Child's Rights: Autism and School. Autism Speaks.
- Why Model Autism Programs Are Rare in Public Schools. (July 2017). Spectrum.
- Who Is Eligible for Medicaid? U.S. Department of Health and Human Services.
- Autism Grants for Families. Autism Speaks.
- Family Funds. California Autism Resource and Evaluation Foundation.