Accessing Funding Through State and Federal Programs

Financial Planning Tool Kit

August 24, 2018

This section of the Autism Speaks Special Needs Financial Planning Tool Kit was prepared by Shirley Blaier-Stein, the author of Autism Mom: New Ways of Thinking, an attorney and an autism advocate.

Caring for children with autism can be overwhelming. There are so many needs and life is often chaotic, especially when severe behaviors are involved. I have met many parents who were desperate for help and support, yet were too overwhelmed with day-today life to be able to figure out their child’s rights and their right for support.

There are roughly three avenues of support for our children, and it is our role as parents to advocate these three avenues tirelessly in order for our children to receive the maximum help.

The first avenue is the school program.

Different states and different towns and school districts offer different services, but under federal law, services should be based on a student’s individualized needs. Unfortunately, the services offered are often dictated by the town’s budget rather than the child’s needs. That’s when we parents come in and advocate. The difference that getting involved and advocating can do in getting your child the right program is vast. Do not hesitate to ask around in your community, talk to other parents, collect the most information, and use a professional when needed. It is usually worth the initial investment because your child has many years in school. You may need more help along the road, yet the initial creation of a good program is very important.

The second avenue for services is health-related therapies covered by health insurance.

Services such as speech therapy and occupational therapy are typically covered. In recent years, some states have adopted laws that mandate covering behavioral therapy for children with autism. Such therapy is need-based and must be assessed by a medical professional. Once your child gets approved, he/ she will receive hours of therapy that typically help tremendously.

The third avenue and the one I will focus on here is government entitlements. Sections include: 

  • Medicaid Funding
  • Home and Community-based Services (the "Waiver")
  • State Department of Developmental Disabilities
  • Funding from the Social Security Agency
  • Other Entitlements

Read Shirley's full overview of government entitlements in the Autism Speaks Special Needs Financial Planning Tool Kit.