In this issue of Capitol Connection, we highlight key updates on federal and state policies affecting the Autism and disability communities, including advocacy opportunities, research developments, and government actions. We encourage you to stay engaged and visit the Autism Society of America’s Action Center to connect with your legislators on these critical issues. The Action Center includes multiple action alerts on important and timely state legislation. 

 

FDA and Leucovorin 

The Food and Drug Administration (FDA) has approved the use of Leucovorin for children and adults with a rare genetic condition, Cerebral Folate Deficiency (CFD) with a confirmed FOLR1 gene variant, that limits the delivery of folate, a form of vitamin B, to the brain. FDA officials estimate that this ultra-rare condition affects fewer than one in a million people in the United States. 

The announcement clarifies earlier comments from a White House news conference in September, when former President Trump and FDA Commissioner Marty Makary suggested the drug was under review for potential benefits for patients with Autism, some of whom may have a related form of folate deficiency. According to the FDA, there is currently little evidence that Leucovorin provides benefit for people with Autism. 

Read more on PBS NewsHour.  

 

Interagency Autism Coordinating Committee 

The Department of Health and Human Services has announced that the first meeting of the new Interagency Autism Coordinating Committee (IACC), originally scheduled for March 19, has been postponed. No reason for the delay has been provided. The Autism Society remains prepared to engage with the committee and continue its work to advance Autism research, services, and policy. 

 

Autism Society Joins New Independent-Autism Coordinating Committee 

The Autism Society is proud to be a member of the newly formed Independent-Autism Coordinating Committee, launched by the Autism Science Foundation. The committee aims to guide private research funding to address the most pressing needs of the Autism community. 

The first meeting is scheduled for March 19, from 10:00 a.m. to 5:00 p.m. ET, and will be held via Zoom. See more here.  

 

CMS Launches CRUSH Initiative to Address Healthcare Fraud  

The Administration recently announced a new effort to strengthen oversight and address fraud in Medicare and Medicaid. As part of this effort, the Centers for Medicare & Medicaid Services (CMS) introduced the Comprehensive Regulations to Uncover Suspicious Healthcare (CRUSH) initiative. 

CMS has released a request for information (RFI) seeking input from a wide range of stakeholders on how to better detect and prevent fraud. Given that past CMS enforcement actions have included services such as Applied Behavior Analysis (ABA) and Home and Community-Based Services (HCBS), this initiative has important implications for the autism community. 

The Autism Society encourages stakeholders to respond to the RFI and highlight the critical importance of these services, as well as the need to preserve access. There is concern that increased focus on fraud could unintentionally restrict services that are already difficult for many individuals and families to obtain. 

 

GAO Report on Disability Employment 

The Government Accountability Office (GAO) released a new report  outlining how the federal government can strengthen employment outcomes for people with disabilities. The report finds that between 2021 and 2024, more than 500,000 individuals with disabilities were unemployed and actively seeking work each year, highlighting persistent gaps in access and opportunity. 

GAO identified several key areas where the Department of Labor (DOL) can take action to improve outcomes. First, the agency should enhance its data collection by tracking employment information by disability type, allowing for more targeted and effective interventions. Second, GAO recommends that the Secretary of Labor establish a formal, written process to routinely analyze state and local workforce monitoring reports. This would help identify widespread accessibility challenges and ensure timely action to address them. Finally, the report calls on DOL to evaluate how well state and local workforce agencies are using existing guidance and technical assistance, including its promising practices for accessibility, and to strengthen efforts to promote and disseminate these resources where needed. 

These steps would help create a more accessible and equitable workforce system for people with disabilities. 

 

Justice In Aging Webinar on State Medicaid Cuts 

Justice In Aging recently hosted a webinar for advocates on how to respond as states adjust their budgets following federal Medicaid cuts. The session focused on the impact of H.R. 1 funding reductions on programs that older adults and people with disabilities depend on for basic needs. It also provided practical strategies for advocates to engage with state policymakers and work to protect these essential programs. 

 

Virginia Autism Advocacy Day 

  A group of advocates gathering in the Virginia State Capitol for Autism Advocacy Day,

The Virginia Autism Coalition, including the Autism Society of Central Virginia, Northern Virginia, and Tidewater, held its annual advocacy day at the state capitol. More than 120 advocates filled the halls of the Virginia General Assembly and met with over 90 legislative offices to raise awareness and push for action on key issues, including Medicaid, early intervention, employment, and other priorities affecting the Autism community. 

Share: