Medicaid Funding Is Vital to Meet the Needs of Individuals with Profound Autism

Categories: ASD and DD, Adult-focused; ASD and DD, Child-focused

By Sarah Weddle, Ph.D., BCBA-D, LABA

[This column was published in the West Springfield Republican on July 24, 2025.]

While some autistic individuals live independently, those with profound autism require significant daily assistance to lead safe, full, rich, and meaningful lives. The CDC estimates that about 27% of autistic people have profound needs. According to the National Autism Center (NAC) a profoundly autistic person “requires lifelong 24-hour care, has a significant intellectual disability, and is non-verbal or minimally verbal.” This categorization is not meant to put labels on individuals, but is useful for understanding the depth of comprehensive services needed for a significant proportion of the autism community.

Profoundly autistic people often need ongoing support in areas such as communication, personal care, home management, and safety. These people typically engage in behaviors of concern which put themselves and others at risk. Behaviors can include wandering into traffic or near a body of water; eye gouging or head banging against very hard surfaces; eating dangerous objects like push pins and cleaning supplies; grabbing a hot pan just out of the oven. While the reasons for these behaviors may vary from person to person, there are well-established, research-based interventions provided by employees of licensed and accredited facilities who ensure safety and progress across the lifespan.

Caregivers who support profoundly autistic individuals also play a vital and compassionate role in their lives, ensuring that their days are filled with attentiveness, creativity, and deep understanding. These caregivers anticipate needs, create opportunities for connection and joy, and help ensure the person they support can participate in meaningful daily activities.

Support might look like watching and supporting mealtimes where kitchen hazards are present, and assistance is needed to eat a nutritious meal. It could be carefully styling hair with a favorite clip so the person feels confident and prepared for their day. It might mean running to grab a helmet or pad so the person does not need to be taken away in an ambulance with head trauma. Or the employee, who checks the entire home multiple times per day to ensure there are no dangerous items that could be mistakenly eaten by the person who lives at the home. Sometimes, it’s the caregiver quietly staying awake through the night, ready for a 2 a.m. trip to the bathroom and a cool cup of water.

Employees who support profoundly autistic individuals at community and day services programs require very specialized training to keep people safe, well, and happy. This training helps staff learn how to be vigilant, consistent, and precise in their interactions to support the routines many of us take for granted. Missteps or gaps can have grave consequences.

Funding from Medicaid is used to pay for residential care and day services for millions of people with special needs. With recent passage of the One Big Beautiful Bill Act (OBBBA) into law, millions in funding cuts are slated for Medicaid services. Individuals with disabilities, including the autism and intellectual developmental community, are projected to be directly and indirectly impacted over the next 10 years. Impacts will likely result in less coverage for therapies and programs and added complexity and roadblocks to getting services approved.

It is expected that with the loss of federal dollars there will be a strain on state budgets to supplement what is currently provided. That could mean more out-of-pocket expenses for families, denials, and loss of programs and services. Individual states will have to make difficult decisions about how they will allocate their money.

May Institute and other organizations that provide services to individuals with profound autism and other special needs believe the fate of Medicaid and funding for disability services is not yet decided. There are still actions we can all take to lift autistic and disability voices. These steps could be made by caregivers, guardians, friends, and neighbors. Most importantly, allies of the profound autism community can assist by taking action on behalf of an individual directly impacted by the OBBBA Law. If you want to help, here are some suggestions:

Get the facts on Medicaid in your state: https://thearc.org/resource/medicaid-data-points-by-state/
Identify your state and federal representatives. https://www.congress.gov/members
Contact their offices and let them know how this impacts your life, and how you intend to vote in the next election.
Reach out to your family, friends, and colleagues in other states and urge them to contact their representatives.
Join advocacy groups such as The Arc, https://thearc.org/policy-advocacy/
Post on social media with the facts, your concerns with elected officials’ decisions, and upcoming events sponsored by reputable advocacy groups.
Consider attending town halls and peaceful gatherings to express your position.
Be persistent and consistent: your actions may not result in immediate changes, but keep at it!

May Institute and thousands of organizations across the United States rely on Medicaid funding to provide services to the disability community. This funding allows us to promote greater independence, choice, dignity, and respect for all individuals. Like our colleagues throughout the country, we will continue to amplify the voices of those we serve, be visible and brave, and push though roadblocks wherever they appear. We would appreciate your support!

Sarah Weddle, Ph.D., BCBA-D, LABA, is the Vice President of Clinical Quality and Standards for May Institute.

About May Institute
May Institute is a nonprofit organization that is a national leader in the field of applied behavior analysis and evidence-based interventions, serving autistic individuals and individuals with other developmental disabilities, brain injury, neurobehavioral disorders, and other special needs. Founded 70 years ago, we provide a wide range of exceptional educational and rehabilitative services across the lifespan. For more information, call 800.778.7601 or visit www.mayinstitute.org.