Public Policy Update (as of 4/22/24)

FEDERAL UPDATE

Budget

Current Budget: Halfway through the federal fiscal year, and after a series of continuing resolutions to keep government programs running, a funding package was signed by the President on March 23. A $1.2 trillion deal to fund the federal government through September includes more money for special education and employment for people with disabilties, but many other programs benefiting people with disabilities did not see an increase. Notably, the spending plan features $14.2 billion in funding for state grants under the Individuals with Disabilities Education Act (IDEA), a $20 million increase over last year. And, vocational rehabilitation will see a $304 million boost, bringing the program to $4.25 billion.

However, home and community-based supportive (HCBS) services, state developmental disabilities councils, protection and advocacy agencies and many other programs that people with disabilities rely on will see level funding. While level funding does not account for inflation, and advocates hoped for increases, it was a relief for many that there were no cuts in these areas. Work on next year’s budget is already underway and these will be areas of advocacy.

Next Year Budget: President Biden used his State of the Union address in March to urge Congress to add funding for Medicaid HCBS. The president followed up by including $150 billion over 10 years “to strengthen and expand Medicaid home and community-based services” in his budget request for the 2025 fiscal year, which begins in October.

Beyond requesting more investment in HCBS, Biden’s budget includes a $200 million increase in spending on special education services, $10 million more to train special educators and early intervention providers as well as funding to improve customer service at the Social Security Administration.

This budget request highlights the president’s priorities but is only the first step in the federal budget process. It is now up to Congress to determine what will ultimately be included in the federal budget for the upcoming year.

Recognizing the Role of Direct Support Professionals Act

This bill (S. 1332) was introduced by Senator Collins (R-ME) and Senator Hassan (D-NH) in April 2023 and passed by the Senate in March 2024. It will help address the need for more Direct Support Professionals in the workforce by ensuring that the government collects more data on the people who help people with disabilities every day. This bill has been sent to the House, where there was a similar bill introduced last April, for consideration.

Supplemental Security Income (SSI) Updates

In a rule published in March, the Social Security Administration said it will stop considering food expenses in calculations of in-kind support and maintenance as of September 30. The agency said that starting this fall it will no longer factor food when determining what’s known as “in-kind support and maintenance.”

The change will limit the amount of information that SSI beneficiaries must report, ensure that rules are easier for everyone to understand and reduce variability in SSI payments from one month to the next.

The agency will continue to factor shelter expenses meaning that SSI benefits can be docked if a beneficiary does not contribute to rent, mortgage or utility costs for their residence. However, some changes to the rental subsidy policy also occurred.

On April 11, the Social Security Administration published a final rule, “Expansion of the Rental Subsidy Policy for Supplemental Security Income (SSI) Applicants and Recipients.” Under the final rule, beginning September 30, 2024, the agency will expand its SSI rental subsidy policy, which due to judicial decisions is currently only in place for SSI applicants and recipients residing in seven States (Connecticut, Illinois, Indiana, New York, Texas, Vermont, and Wisconsin). In those states, rental assistance, such as renting at a discounted rate, was less likely to affect a person’s SSI eligibility or payment amount. This new rule extends the same advantageous policy to all SSI applicants and recipients nationwide. This may increase the benefit amount some people are eligible to receive and will allow more people to qualify for critical SSI payments.

Proposed Rule to Ban Electrical Stimulation Devices

In an advocacy effort we have been following for a few years, the Food and Drug Administration (FDA) announced a proposed regulation that would ban the use of electrical stimulation devices that are used to treat self-injurious or aggressive behaviors. Currently, it is legal to use these devices on children and adults to "modify their behavior.” At this time, the FDA has information that indicates only one facility is using these devices in the United States, the Judge Rotenberg Educational Center (JRC) in Canton, Massachusetts, and estimates between 45 and 50 individuals are currently being exposed to the device.

The FDA tried to ban these devices in 2020 but their decision was challenged in court where the court determined that the FDA did not have the authority to ban them. Since that decision, changes to the Federal Food, Drug, and Cosmetic Act made it clear that the FDA does have authority to issue this ban.

The proposed rule is available online at www.regulations.gov for public comment through May 28.

Autism Acceptance

For the first time, President Joe Biden used a proclamation on April 2nd to designate World Autism Acceptance Day. In previous years, the date had been called World Autism Awareness Day.

The language change is the result of advocacy. The movement toward autism “acceptance” first emerged as a grassroots effort in 2011 spearheaded by Paula Durbin-Westby, a self-advocate who created a Facebook event titled Autism Acceptance Day.

STATE

Legislative

Legislative short session will begin April 24, 2024. The short session is designed primarily for review and adjustments to the two-year budget that was approved last session. With the elections coming up, the expectation is that this session will be quick. One critical area of focus for I/DD advocates is to increase the funding allocated last session for direct support professional wage increases. As a reminder, $60 million was included in the budget which fell short of the $90 million needed to achieve the targeted increases. Continuing education and advocacy around the waitlist, housing, transportation and other areas of need are critical. Even if there is limited opportunity for action this session, information and education will help set the stage for further work in the long session.

Tailored Plan

After completing readiness reviews with the four Local Management Entities (LMEs) – Alliance Health, Partners Health Management, Trillium Health Resources and Vaya Health moving with Tailored Plan – the Department of Health and Human Services (DHHS) determined that they are ready to move ahead with implementation of the Tailored Plans beginning on July 1, 2024. As a reminder, these plans will cover doctor visits, prescription drugs and services for mental health, substance use, I/DD and traumatic brain injury in one plan.

Letters were mailed in mid-April to anyone moving to a Tailored Plan. Tailored Plan beneficiaries will be able to choose a primary care provider (PCP) between April 15 and May 15. If a person does not choose a PCP by May 15, the Tailored Plan will assign one to the person. People can change their PCP through Jan 31, 2025. Member ID Cards and welcome packets will be sent at the end of May.

While the goal is to have very little to no disruption in primary care providers, the readiness reviews indicated that between 5% and 9% of people enrolled in the Tailored Plan will not be able to keep their current PCP. There also continues to be concern about access to specialty care providers.