Lifelong supports

The autism community relies on lifelong supports

People with autism and the families that support them rely on a range of options throughout their life spans to live, remain safe and participate in their communities. This includes residential and day supports, respite, recreation, transportation and others.

Support for caregivers

Family caregivers frequently play a significant role in providing support for people with autism. These unpaid caregivers require assistance to continue caring for people with autism – both children and adults – living in the community. Family caregivers provide supports for children and adults living with autism across their life span – 80% of adults with autism live at home and receive support from a family caregiver.

Home and community-based services

The majority of these lifelong supports are funded by Medicaid Home and Community-Based Services (HCBS). Different HCBS may be available to people based on their age, where they live and level of functional impairment. Lengthy waiting lists exist around the country and the availability, scope and duration of supports varies widely by state. The result is a patchwork system that struggles to meet the demands of both families and adults with autism living in the community. Without HCBS, families and individuals must provide these supports on their own.

Policy priorities

Autism Speaks believes that lifelong services and supports must be sufficiently funded to ensure that every person with autism and their families receive the individualized services they need, when they need it. Furthermore, these supports must fundamentally respect the dignity and individual needs of each person receiving services. Access to HCBS must be increased, and HCBS providers must be trained and paid adequately to ensure they have the capacity to provide high-quality services. Additionally, residential and day services options as well as affordable housing programs must be increased and improved ensuring that autistic people have access to supports across the spectrum. Finally, more must be done to ensure that families and people with autism have access to the appropriate resources and interventions to ensure their dignity and safety. Access to high-quality community supports must be significantly increased and a permanent financing solution must be created to address the lifelong support needs of individuals with autism and their families wherever they live.

Financial planning

Many children and adults with disabilities, including autism, have significant current or anticipated expenses. Planning for those expenses has often proven difficult.

The lifetime cost of supporting one person with autism can range from $1.4 to $2.4 million.

The Achieving a Better Life Experience (ABLE) Act amended the federal tax code to allow families to set up tax-exempt 529A savings accounts for disability- related expenses. These accounts can be used by people with disabilities to save without losing their eligibility for Medicaid or Social Security.

As of March 2020, $380.8 million in assets had been invested in over 63,743 ABLE accounts. Increasing the number of people who use ABLE accounts will help improve and sustain ABLE accounts overall.

For almost 15 years, Autism Speaks has been developing resources to help support people with autism and their families throughout the lifespan and across the spectrum.