Medicaid Waivers and Autism: What Families Need to Know Right Now 

By Lisa Ackerman 

For many families living with autism, Medicaid waivers are not just paperwork or policy discussions — they are a lifeline.  These lifelines are under attack in Maryland, Minnesota, California and are soon to be the state you live in. 

Across the country, parents are hearing alarming headlines about Medicaid, waiver reviews, fraud investigations, budget concerns, and possible changes to services. It is understandable that families are worried, especially those already navigating long waitlists, staffing shortages, financial strain, and the daily realities of caring for a loved one with autism. 

At TACA, we hear these concerns every day. 

For more than 25 years, TACA has worked directly with families across the United States. One message remains consistent: families need more support, not less.  

Autism Prevalence Is Rising — and So Is the Need for Services 

Autism prevalence continues to rise — and with it, the demand for services and supports. 

Let’s be clear: this is not simply about “better diagnosis,” broadened criteria, or the latest narrative of “over diagnosing.” Families and providers across the country are experiencing a very real increase in autism diagnoses and support needs.  

As the number of diagnosed individuals grows, so does the pressure on systems already struggling to keep up. 

Families are currently facing: 

• Long waiver waitlists — often averaging 3 to 5 years, with some autism-specific waivers extending beyond 10 years in certain states  

• Delays accessing necessary services even after diagnosis  

• Limited provider availability and workforce shortages  

• Additional delays caused by administrative hurdles and authorization requirements  

For many families, waiver services provide access to: 

• Behavioral therapy  

• Respite care  

• Communication accessibility  

• In-home support   

• Family support services  

• Transition and employment programs  

• Critical community-based services  

Without these supports, many families would struggle to safely care for their loved ones. 

Two Things Can Be True at the Same Time 

At TACA, we believe families deserve access to services — and we also believe protecting the integrity of these programs matters. 

We can hold two truths at the same time: 

1. Families desperately need waiver services and support  

2. Strong safeguards are necessary to ensure these programs remain sustainable for the future  

Protecting the system helps ensure services remain available not only for families today, but also for those who will need them tomorrow. 

TACA supports meaningful efforts to strengthen program integrity through clear standards, transparency, responsible monitoring, and appropriate enforcement. 

At the same time, these efforts must be thoughtful and balanced. Families who legitimately depend on waiver services should not bear the burden of system failures, excessive administrative hurdles, or poorly designed enforcement actions. Efforts to address fraud and misuse must not unintentionally create additional barriers for individuals and families who truly need care and support. 

Why Families Are Concerned 

Many parents fear that efforts to review Medicaid spending could unintentionally reduce access to services. 

Those fears are understandable. 

ABA therapy, waiver supports, and home-and community-based services are already difficult to obtain in many areas. Nationally, families often face: 

• 12–48 month waitlists for autism diagnosis  

• Additional wait times after diagnosis before services begin  

• Provider shortages that limit care options  

For some children, especially during early developmental years, delays in support can have lasting consequences. 

TACA believes: 

• Access must be protected  

• Families need options that meet the needs of the individual 

• Accountability and access can coexist  

• Families should not bear the burden of system failures  

Oversight Should Focus on Bad Actors — Not Families in Need 

When irregular spending patterns emerge, transparency and review are appropriate. 

For example, reports showing Medicaid hospice expenditures in Los Angeles County exceeding those of entire states like Texas and Florida raise legitimate questions that deserve further examination and accountability. 

But families relying on autism waiver services should not become collateral damage. 

A thoughtful approach starts by reviewing systems, billing practices, and companies engaging in potential misuse — while preserving necessary care for individuals who truly need support. 

In April 2026, Team TACA took action on behalf of families nationwide. TACA sent two formal letters to Diana Diaz-Harrison urging thoughtful action and support for families impacted by Medicaid waiver and ABA service concerns. In these communications, TACA emphasized the urgent need to protect access to critical services for individuals and families who truly rely on them. The letters highlighted growing waitlists, provider shortages, delayed access to care, and the importance of ensuring families are not unintentionally harmed by efforts designed to strengthen accountability and oversight. 

What Families CAN Do Right Now 

While policy discussions continue, families still have a voice. 

1.  Share Your Story 

Contact your state and federal representatives and explain how waiver services impact your family. 

Real family stories matter. Policymakers need to hear how these supports affect safety, caregiving, employment, financial stability, and quality of life. Important note: social media posts share to your circle and rarely get to the individuals who can make policy changes. 

2.  Participate in Federal Autism Efforts 

Families can engage with the federal Interagency Autism Coordinating Committee (IACC). 

You can: 

• Attend meetings virtually or in person  

• Submit public comments  

• Sign up for updates  

• Share concerns and recommendations directly with federal stakeholders  

3.  Stay Informed Through Trusted Sources 

Policy conversations move quickly. Families should follow reliable advocacy and disability organizations for updates and guidance. 

One recent resource discussing concerns around federal waiver funding and in-home supportive services is available here: 

Disability Rights California Resource on Federal Deferral of IHSS Funds 

Final Thoughts 

Families living with autism deserve stability, access to care, and systems they can trust. 

We must continue advocating for: 

• Expanded capacity and reduced waitlists  

• Building pathways toward greater independence 

• Protection of health and community needs-based services  

• Accountability and transparency  

• Thoughtful oversight that targets bad actors without harming families  

Most importantly, we must keep the focus where it belongs: helping individuals with autism reach their fullest potential. 

Resources for finding elected officials: 

USA.gov – Find Elected Officials 
Official federal government resource to locate U.S. Senators, Congressional Representatives, governors, state legislators, and local officials by ZIP code.  

Congress.gov – Find Your Members of Congress 
Allows families to search directly for federal House and Senate representatives by state or ZIP code.