In this issue of Capitol Connection, we celebrate the passage of the Autism CARES Act and the Lifespan Respite Care Reauthorization Act in the House. The Justice Center and Autism Society Texas Affiliate have partnered with the Innocence Project to urge clemency for Robert Roberson, an Autistic man facing execution. Also, see several actions taken by the administration pushing states to provide more and better services.  Please use the Action Center to write to Members of Congress to thank them for their vote. Use the election center to prepare for Election Day on November 5, 2024. 

Autism CARES Act 

The Autism Society is pleased to report that the House of Representatives passed the Autism CARES Act of 2024 (H.R. 7213) on Wednesday, September 18. The bill was passed under suspension of the rules on a vote of 402-13 in the House after House and Senate leaders negotiated the minor differences between the two bills. The Autism CARES Act of 2024 addresses key areas such as research on Autism and aging, services for those with more complex needs, communication challenges, and the shortage of developmental pediatricians.  The bill also increases the authorization for appropriations. The next step is for the Senate to take up the bill. See the Autism Society’s press statement and letter to Congress. Take action here to urge Senators to pass the bill. 

Lifespan Respite Care Act 

The Autism Society also supported another bill passed under suspension yesterday, the Lifespan Respite Reauthorization Act (HR 6160). The next step is for the Senate to take up its bill to reauthorize the law (S. 4325).  The Senate bill is slightly different in that it expands eligibility to young caregivers under the age of 18. Many young caregivers provide significant caregiving support to siblings and parents with disabilities. All should be entitled to respite. For this reason, the Autism Society urged Congress to recede to the Senate version when reconciling the two. Stay tuned. 

FY 2025 Appropriations 

The House failed on a vote of 202-220 to pass a continuing resolution (CR) to keep government programs operating while it works out final spending for the 12 annual appropriations bills. The new fiscal year begins on October 1. If Congress cannot come to an agreement on the CR, it could lead to a partial government shutdown. Major disagreements are whether to include a controversial bill (HR 8281) that would require those registering to vote to show proof of citizenship and the amount of time to extend program funding – six months versus two or three. The Autism Society is urging Congress to work in a bipartisan, bicameral process to pass a clean short-term CR and work to finalize all annual funding bills as soon as possible. 

Think Differently Database Act 

The Autism Society signed on to a CCD letter in support of the Think Differently Database Act (H.R. 670) that was included in a package of bills passed by the House Energy and Commerce Committee on September 18. The legislation, championed by Rep. Molinaro (R-NY), would help increase awareness about caregiving options for people with disabilities by requiring the U.S. Department of Health and Human Services (HHS) to establish (and periodically update) a web page with information (i.e., eligibility, available services, wait times) on state caregiving services, including Medicaid HCBS waiver and buy-in programs. A companion bill was introduced by Senator Schmitt (R-NE) in April.  

State Advocacy 

New HCBS Medicaid Eligibility Guidance  

The Centers for Medicare & Medicaid Services released new guidance for states to ensure continuity of coverage for individuals with disabilities who receive home and community-based services (HCBS). This comes after 25 million lost Medicaid eligibility after the end of the public health emergency and states had to start reevaluating coverage. The guidance stresses that for people who receive HCBS, losing eligibility is devasting and can result in being unnecessarily institutionalized. Therefore, states must do all they can to ensure continuous coverage. This guide can be used to advocate for those in your communities to prevent the loss of coverage. 

DOJ Maine ADA Lawsuit 

The Civil Rights Division at the U.S. Department of Justice sued the State of Maine for unnecessarily segregating children with behavioral health disabilities. The lawsuit states that Maine keeps children with behavioral health disabilities in hospitals, residential treatment facilities, or even juvenile detention facilities instead of offering community-based treatment. According to data provided by the State, children sent to in-state residential treatment facilities stayed there for an average of 246 days in Fiscal Year (FY) 2020 even though the State describes residential treatment as intended to last one to four months. Data from Maine’s Department of Corrections reported that about 84% of youth arrive at the juvenile detention facility with three or more mental health diagnoses and that 73% of children detained longer than 30 days were awaiting placement in the community or in a different setting, and approximately 53% were detained so the State could “provide care. The letter identified steps that Maine should take to remedy the violations. The Autism Society of Maine is involved in the discussion on how to resolve these injustices. 

Department of Education Illinois Resolution 

The United States Department of Education’s Office for Civil Rights (OCR) entered into an agreement with Four Rivers Special Education District in Illinois. OCR found that the district’s disciplinary practices denied students with disabilities a free appropriate public education (FAPE) and did not comply with civil rights obligations to students under Section 504. The district has agreed to take steps to ensure students who have missed instructional time due to excess use of crisis rooms or law enforcement receive compensatory education, among other steps. See more in the press release.  

Justice Corner  

 Robert Roberson  

 The Autism Justice Center and the Autism Society of Texas participated in a press conference at the Texas State Capitol to urge Gov. Greg Abbott and the Texas Board of Pardons and Paroles to grant clemency to Robert Roberson.  Mr. Roberson is scheduled for execution on October 17, 2024.  He was diagnosed later as Autistic and mounting evidence has shown that misconceptions about his lack of emotion and odd demeanor played a role in his conviction.  Watch this powerful conversation between Mr. Roberson and the lead detective in the case, who now regrets his involvement. See more in our Press Release.  

Medicaid Legal Challenge Victory 

On August 26, 2024, a federal court handed down a major victory for Medicaid enrollees in Tennessee, including people with disabilities, in the case A.M.C. v. Smith. The case was brought by the Tennessee Justice Center, National Health Law Program, National Center for Law and Economic Justice, and pro bono firm Selendy Gay, PLLC. 

The detailed decision describes pervasive flaws in Tennessee’s Medicaid program, called TennCare, that harm access to health care for low-income Tennesseans. These flaws included significant issues with the State’s Deloitte-operated automated eligibility system (Tennessee Eligibility Determination System or TEDS), the notices it generates, and barriers to legally required hearings for people wrongfully terminated. As the federal court explained, “When an enrollee is entitled to state-administered Medicaid, it should not require luck, perseverance, and zealous lawyering for him or her to receive that healthcare coverage.” But that is exactly what Medicaid enrollees in Tennessee have needed to maintain access to vital health coverage. 

Learn more about the case here.