Capitol Connection: March 28, 2024 | Autism Society

In this issue of Capitol Connection, see details on the final FY2024 appropriations, the President’s FY25 Budget, updates on legislation moving through Congress, and a notice of proposed rulemaking on electric shock treatment, among other updates. Use the Autism Society’s Action Center to educate your Members of Congress on legislative issues important to you and your family. To easily keep up to date on your opportunities to take action, text AUTISM to 50457 to receive our alerts. 

 

Final Fiscal Year 2024 Final Appropriations 

Congress passed and the President signed a bill with the final six funding bills to close out the fiscal year 2024 appropriations cycle that began on October 1st, 2023. The package included the Labor, HHS, and Education bill that contains most programs supporting people with Autism and other disabilities. The negotiators had to write the bills under a strict cap on discretionary funding that was included in the Fiscal Responsibility passed last year. This final bill provides mostly flat funding for disability funding and some small wins in early childhood programs, special education, mental health programs, and mainstream housing vouchers. 

More specifically, the Administration for Children and Families would see $34 billion, a $915 million increase largely focused on early childhood programs. That figure includes $8.7 billion for the Child Care and Development Block Grant and $12.3 billion for Head Start.  

Funding for the Centers for Disease Control and Prevention would increase to $9.2 billion, a $4.5 million bump. This funding includes Autism surveillance, early detection programs, and drowning and suicide prevention programs, among other initiatives important to the Autism community. 

The Substance Abuse and Mental Health Services Administration received $7.4 billion, including $520 million for the 988 Suicide and Crisis Lifeline, an $18 million increase from fiscal 2023.  

The Administration for Community Living (ACL), where many developmental disability programs reside, received $2.5 billion, a $5 million decrease. As readers can see in the chart below, the DD Councils, protection and advocacy systems, and the University Center for Excellence all received flat funding. 

The bill provides $44.7 billion for K-12 education, including the Individuals with Disabilities Education Act programs. That figure represents a $131 million decrease from fiscal 2023. This includes $18.4 billion for Title I grants, an increase of $20 million above fiscal 2023, and $15.5 billion for special education, an increase of $14 million above fiscal 2023.   

Within the Housing and Urban Development funding bill, the package provides enough funding for the Housing Choice Voucher program to avoid significant cuts to the number of households currently receiving federal rental assistance. It also increases Project-Based Rental Assistance, public housing, homelessness assistance grants, and Native American housing programs. 

For more information on other line items closely monitored by the Autism Society, see the chart below comparing funding in the final bill to last year’s final numbers and with the President’s recently released FY 2025 budget proposal. 

President’s FY25 Budget 

Before the FY24 appropriations process was completed, the President released the Administration’s FY25 Budget proposal on March 11th, 2025. One of the highlights of the President’s Budget is the proposal to invest $150 billion over ten years for Medicaid home and community-based Services (HCBS). Due to the budget caps on discretionary funding, most programs that support people with disabilities are level-funded or provided with small increases.  See the table below with all of the details regarding discretionary program funding comparing FY 24 and FY 23 and the President’s FY25 request. 

 

Table Comparing Appropriations for FY 23 to FY 24 for Programs within the L-HHS-ED and DOJ bills (in millions)
	Final FY23 Enacted	President FY 2024 Request	Final FY 2024	Difference between FY 23 and FY 24	President FY 2025 Request
Labor, Health and Human Services, Education, and Related Agencies
Health Resources and Services Administration (HRSA)
Maternal and Child Health Block Grant	816.0	937.0	814.0	-2.0	937.0
Autism and other DD (Includes LEND)	56.0	57.0	56.0	0	57.0
Administration for Community Living (ACL)
Protection and Advocacy	45.0	60.0	45.0	0	45.0
DD Councils	81.0	82.0	81.0	0	81.0
University Centers	43.0	46.0	43.0	0	43.0
Projects of National Significance	12.0	16.0	12.0	0	15.0
Lifespan Respite	10.0	14.0	10.0	0	10.0
Centers for Disease Control and Prevention (CDC)
Center on Birth Defects and DD (NCBDDD)	206.0	223.0	206.0	0	206.0
Injury Prevention and Control	761.3	1,352.0	761.3	0	943.0
—Vaccines for Children	5,609.0	6,002.0	5,815.0	+206.0	8,040.0
Drowning Prevention	2.0	2.0	2.0	0	2.0
Suicide Prevention	28.0	49.0	30.0	+2.0	68.0
Substance Abuse and Mental Health Services Administration
988 Behavioral Health Hotline	502.0	836.0	520.0	+18.0	602.0
National Institutes of Health
NICHD	1,749.0	1,749.0	1,759.0	+10.0
NIMH	2,113.0	1,949.0	2,188.0	+75.0
IDEA Part B & C
IDEA Part B	14,194.0	16,259.0	14,214.0	+20.0	14,394.0
Part C Early Intervention	540.0	932.0	540.0	0	545.0
Preschool Grants	420.0	502.5	420.0	0	425.0
IDEA Part D Program
State Personnel Development	38.6	d53.6	38.6	0	38.6
Technical Assistance	45.0	55.5	39.0	-6.0	45.0
Personnel Preparation	115.0	250.0	115.0	0	125.0
Parent Information Centers	33.0	49.0	33.0	0	33.0
Education technology	31.4	41.5	31.4	0	31.4
Postsecondary Program for ID	13.8	15.0	13.8	0	13.8
Supported Employment	22.5	22.5	22.5	0	22.5
Department of Justice
Kevin and Avonte’s Law	3.0	3.0	3.0	0	3.0

 

Legislation Updates  

DSP Bill Passed Senate 

We are pleased to report that the Recognizing the Role of Direct Support Professionals Act (H.R. 2941 / S. 1332) was unanimously passed by the Senate on March 21st. This bill allows the Office of Management and Budget to establish a separate category within the Standard Occupational Classification (SOC) system for DSPs. A unique SOC for DSPs would help states and the federal government collect data on demographics and turnover rates. This, in turn, will help inform policies to address the workforce shortage. A DSP SOC will also help states more accurately set rates, which could positively impact DSP wages. Please use our action alert to educate your Representatives about this bill.  

 

Lifespan Respite Reauthorization  

Legislation to reauthorize the Lifespan Respite Care Program (H.R. 6160) passed the House Energy and Commerce Committee. This bill, led by Representatives Molinaro (R-NY) and Cardenas (D-CA), reauthorizes the program for the next four years. This law provides state grants to support their ability to create, coordinate, or expand, respite programs to support family caregivers.  The Committee voted unanimously in support of the bill. It will next move to the House floor. There is currently no Senate companion bill. The Autism Society will work to move this bill through Congress.  

 

Health Equity Act 

Last month, Representatives Payne (D-NJ-10) and Fitzpatrick (R-PA-1) introduced the Health Equity for People with Disabilities Act (H.R. 7503). The bill ensures community health centers serve people with disabilities as medically underserved groups and medically underserved areas. The bill also provides community health centers with quality improvement grants to reduce barriers to healthcare for people with disabilities by improving staff skills and ensuring accessibility of medical equipment. The House bill is identical to the Senate bill introduced by Senator Casey (D-PA) (S. 1219) on March 19th. 

 

Credit for Caring Letter and One Pager 

The Autism Society signed a letter led by AARP thanking Senators Bennet (D-CO) and Capito (R-WV) and Representatives Carey (R-OH) and Sánchez (D-CA) for introducing the bipartisan Credit for Caring Act (S. 3702/H.R. 7165). This bill would create a new, non-refundable federal tax credit of up to 5000 dollars for eligible working family caregivers to help address the financial challenges of caregiving. In addition, AARP created a one-pager outlining the highlights of the bill. The Autism Society supports this legislation.  

 

Resources  

Waiting List Report 

A new report from ANCOR and UCP shows that approximately 80% of those on waiting lists in 2023 lived in just five states — Texas, South Carolina, Florida, Illinois, and North Carolina. Texas alone accounted for nearly two-thirds of people with disabilities on such lists nationwide. These states can use this data to advocate for services. 

 

Justice Corner  

Electric Shocks 

The Food and Drug Administration reissued a proposal to ban shock devices used to modify behavior after Congress passed legislation clarifying the agency’s authority to do so. The devices are used at the Judge Rottenberg Center in Massachusetts, the only institution known to continue to do so.  Comments are due May 28th, 2024. The Autism Society will be submitting comments and encourages affiliates and other allies to do the same.  

 

DOJ Settlement with Pasco County School District  

Assistant Attorney General Kristen Clarke of the Civil Rights Division at the U.S. Department of Justice, announced a settlement agreement with the Pasco County School District in Florida to resolve the department’s investigation into alleged discrimination against students with disabilities in school discipline, threat assessment practices, and referrals of students to law enforcement. The department conducted its investigation under Title II of the Americans with Disabilities Act (ADA). This agreement is part of our ongoing efforts across the country to combat practices that push students out of the classroom. 

 

Complaints against Medicaid Programs in DC and Texas, Violations of the ADA 

Lawsuits were filed led by the National Health Law Program, Disability Rights DC, and Disability Rights Texas with the U.S. Department of Justice and the U.S. Department of Health and Human Services Office for Civil Rights for violating the Americans with Disabilities Act. In DC, people with disabilities have either lost coverage or have lengthy renewal periods because of the case management system that relies on contractors who have failed to complete renewals in a timely manner causing both delays and procedural denials.  In Texas, call centers are providing inaccurate re-enrollment information to people with disabilities and the renewal process requires re-submitting administrative information that was previously documented. 

 

USDOJ Meeting
The Autism Society of America participated in a national meeting of disability advocates and Kristen Clarke, the Assistant Attorney General for Civil Rights at the U.S. Dept. of Justice. Advocates raised concerns on several issues including voting rights, housing, and artificial intelligence (AI).  Carlean Ponder, director of the Autism Justice Center, asked for more departmental investigations into solitary confinement practices in jails and prisons, and the lack of reasonable accommodations for Autistic people who are incarcerated.  The Civil Rights Division of DOJ has met with disability advocates on a regular basis to gather community input on their investigations and areas of focus.  This has resulted in the DOJ taking on new issues that impact the disability community, such as filing a statement of interest on behalf of a lawsuit that targets the overuse of police in response to mental health calls. 

 

Police Shooting 

On the fateful day of March 9th, a desperate call for assistance was made to 911 by the family of a 15-year-old Black Autistic boy, Ryan Gainer, who was in the throes of a mental health crisis. The incident, however, took a tragic turn when it culminated in the fatal police shooting of young Ryan. 

In the aftermath of this heartrending event, the Autism Society of Inland Empire in California stepped forward, expressing their deep condolences. They highlighted the urgent need to mend the fractured Autism Safety Crisis Net system. In a determined effort to bring about a paradigm shift in the local response to Autism, mental health, and behavioral health crises, they have initiated a new campaign. 

Echoing these sentiments on a national level, the Autism Society of America underscored the critical importance of deploying a mental health response to a mental health crisis. Through its Autism Justice Center and the Safety on the Spectrum™ program, the society has pledged its unwavering commitment to advocate for systemic changes. Their goal is to ensure that responses to mental and behavioral health crises are appropriate and effective, so that no other family has to suffer the anguish of such a preventable loss. This tragic incident serves as a stark reminder of the urgent need for reform in our approach to mental health crises, particularly those involving individuals on the Autism spectrum.