Public Policy Update (as of 6/21/24)

FEDERAL

Budget

Congress is holding hearings and writing the appropriations bill as part of the federal process. The federal budget year begins October 1, 2024. The Labor-Health-Human Services-Education and Related Agencies (LHHS), which includes many of the funding streams that impact people with intellectual or other developmental disabilities (I/DD), is scheduled for mark-up on June 27 in the LHHS Subcommittee and scheduled for Appropriations Committee on July 10.

Legislation to Improve Accessibility of Higher Education

On May 21, Senator Casey (D-PA) introduced two bills that will make college more accessible for students with disabilities. The first bill is the Higher Education Grant Flexibility Act (S. 4379), which will let students with disabilities take less classes and still receive the same student loans as students without disabilities. Student loans are money that a person borrows to pay for their education. The second bill is the Expanding Disability Access to Higher Education Act (S. 4280), which will give money to programs that help prepare students with disabilities for college and their careers.

Autism Report

On May 29, the US Department of Health and Human Services (HHS) released the FY 2019-2023 Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Autism Collaboration, Accountability, Research, Education, and Support Act (Autism CARES Act) of 2019. This required report describes autism related activities across federal departments and agencies and includes information on the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs. Read the report here.
The Autism CARES act of 2024 (HR 7213) is in committee in the House. The bill must be reauthorized by September 30.

Final Rules

Section 504 of the Rehabilitation Act of 1973: The Department of Health and Human Services’ Office for Civil Rights finalized a rule that updates, clarifies, and strengthens HHS’ implementing regulation for Section 504 of the Rehabilitation Act of 1973. This is the first major update to HHS’ Section 504 regulations since they were first issued in 1977. Those historic regulations were issued after years of advocacy by disability rights advocates culminating in a 25-day sit-in at the Department of Health, Education, and Welfare regional office in San Francisco.

Some of the critical issues addressed in this rule include accessing medical care; information and communication technology, including web and mobile accessibility; accessible medical diagnostic equipment; and providing services in the most integrated setting appropriate to the person’s needs.

Section 1557 Nondiscrimination in Health Programs and Activities in Affordable Care Act: The Department of Health and Human Services released a final rule to strengthen civil rights protections in health care including accessible telehealth and health services in integrated community settings.

HHS Final Access Rule: On April 22, 2024, the Department of Health and Human Services, through the Centers for Medicare & Medicaid Services, released the Ensuring Access to Medicaid Services final rule (Access Rule) which creates national standards that will allow people enrolled in Medicaid to better access care when they need it and also strengthens home and community-based services (HCBS), which millions of older adults and people with disabilities rely upon to live in the community.

This final rule includes new requirements related to the direct care workforce, access to home and community-based services (HCBS), health and safety protections, quality measures, and more.

New Pediatrics Guidance on Transition to Adulthood

In a policy statement published this month in the Pediatrics, the American Academy of Pediatrics journal is spelling out the steps that physicians should take as children move toward age 18 when they will be legally recognized as adults.

Pediatricians should start discussing the transition to adulthood and what level of assistance children are likely to need between the ages of 12 and 14. They should work together with patients, their caregivers and their teachers, always advocating for the least restrictive decision-making environment, according to the guidance. The guidance notes that pediatricians can familiarize themselves with local and state resources to make referrals, as needed, and they can reevaluate any decision-making arrangements during annual exams “to align with the youth’s desires, needs, and decision-making abilities over time.”

FDA Efforts to Ban Shock Devices

Since Congress clarified that the FDA does have the right to ban shock devices, the FDA acted on its authority and just ended its comment period in May on a proposed regulation that would prohibit use of the electric shock devices. The agency is currently considering more than 8,700 comments it received and deciding whether to finalize the rule.

However, a bill making its way through the U.S. House of Representatives would limit the FDA’s ability to do away with so-called electrical stimulation devices. The rider to the bill known as the Agriculture, Rural Development, Food and Drug Administration and Related Agencies Appropriations Act would prevent the FDA from banning a device that’s used by court order. Since all of the people receiving shock treatment at the Judge Rotenberg Center are doing so by court order, the provision would effectively nullify any FDA effort to ban the devices.

The measure is set to go before the House Appropriations Committee on July 10. The Autistic Self Advocacy Network and other advocacy groups are actively advocating against this bill.

STATE

Legislative Budget

In this short session which is a time to make adjustments to last year’s two year budget, a conference committee was appointed early in hopes that they would develop a budget between the House and Senate that would use the existing $987 million from the April surplus (surprise) to make specific adjustments to the existing fiscal year 2024-2025 budget. The committee was not able to come to an agreement. The key issue was that the House wanted to draw down an additional $1 billion from reserves and the Senate did not want to include this in completing any budget adjustments.

Since a compromise was not reached, the House and Senate went back to their chambers to work on budgets. The House released their budget on June 16 and passed its $31.7 billion budget on a 68-36 vote on June 20. The Senate opened debate on their own proposal on the same day and are scheduled to bring it to a floor vote on Monday June 24.

The House budget includes additional raises for teachers and state employees while the Senate proposal keeps the 3% state employee and teacher raises already approved. Both budgets include increased funding for private school tuition vouchers, and funds to address the large gap related to child-care facilities. Both also include additional funds for Medicaid, with the House budget adding increases in Medicaid provider rates for durable medical equipment ($9 million increase) and rates for Speech Language Audiology Therapy ($4 million increase).

More specific to I/DD, both budgets include funding to adjust budgets for Exceptional Children programs in the school system by allocating funds on a per child basis. Each Local Education Agency (LEA) will receive funds for the lesser of either all children who are identified as children with disabilities or thirteen percent (13%) of its allocated allotted average daily membership in the local school administrative unit for the current school year. This will help systems where more than 13% of students are identified as children with disabilities.

The House budget also included some funds for the Community College system to conduct program planning to build capacity for services for students with I/DD, as well as additional funds for Development Day Centers for children with disabilities.

Neither budget contains funds for the Innovations waiver or direct workforce salary increases.

With July 4th holiday approaching and many legislators having plans through mid-July, it is uncertain when a budget will be agreed upon. If an updated spending plan is not passed during this legislative short session, the budget enacted last year will remain in effect.

HB 237 - Mask bill

This bill initially would have removed language from statutes that would allow people to wear masks for health reasons. After a great amount of feedback and advocacy, the bill went to conference committee and language was amended to include ‘medical or surgical grade mask to prevent the spread of contagious disease.’ While this was an improvement there are continuing concerns about how ‘medical or surgical masks’ are defined, how contagious disease is defined, and the need for some people to wear masks for allergies and other medical conditions that may not be ‘contagious.’ There is also concerning language around the requirement to remove a mask when asked by ‘owner or occupant of public or private property’ for the purpose of identification of the person wearing the mask.

This bill passed the Senate and House and was sent to the Governor for his signature. The Governor vetoed the bill. There will likely be an override of the veto.