In this issue of Capitol Connection, find updates on the continuing resolution passed to avoid a government shut-down, a tax bill extending the Child Tax Credit expansion, new legislation supporting disability-run small businesses, comments on early childhood rules, and other resources to help state advocates. 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. 

Disability Policy Seminar Registration 

Registration for the Disability Policy Seminar is open! This is a three-day policy event taking place from April 8th through the 10th  in Washington, D.C. that brings together self-advocates and professionals in the disability field to learn all about current legislative issues. The first two days will feature sessions on various topics such as the Autism CARES Act, education and employment policy, criminal legal issues, and disability funding. On the third day, participants take all the knowledge gained from the sessions to advocate for policies with their Members of Congress at Capitol Hill. This event is a great opportunity to learn and network with colleagues throughout your state and the country. Affiliates are encouraged to send at least one representative to participate in this important event. 

Continuing Resolution 

On January 18th, Congress approved a short-term funding bill (continuing resolution) to keep the government open for six weeks and avert a partial shutdown. The new continuing resolution (CR) funds parts of the government through March 1st and the rest through March 8th. There will be intense pressure to pass an appropriations package that covers the rest of Fiscal Year (FY) 2024 (through September 30th) and avoid another CR. Under last year’s Fiscal Responsibility Act (FRA), if any part-year CR remains in effect past April 30th, revised FY2024 spending caps will kick in that could lead to cuts important to people with Autism. Thank you to those who wrote to Members of Congress using our Action Center to educate them about the need to pass adequate funding for programs that support people with Autism and their families.  

Fiscal Commission 

The House Budget Committee advanced legislation that would create a fiscal commission to devise action steps to deal with the nation’s debt. Disability advocates are concerned that the commission will only look at cuts to mandatory and discretionary programs, not revenues. Previous budget proposals introduced by the House Budget Committee Chairman Arrington have included deep cuts to programs that support people with disabilities without raising any revenues. The Center on Budget and Policy Priorities published a blog outlining five reasons why a debt commission is the wrong way to tackle debt. The Center points out that rather than setting up a commission that will likely fail, policymakers should focus on the coming expiration of the individual provisions of the 2017 tax cuts and take steps to ensure that, at a minimum, they are not extended in ways that worsen our fiscal challenges. 

Tax Bill and Child Tax Credit 

On Friday, the House Ways and Means Committee passed a bipartisan $78 billion tax package. The bill includes an expansion of child tax credits that shrank after a pandemic-era expansion, reinstatement of lapsed business tax deductions, and expanded incentives for affordable housing development and disaster victims. It is unclear when the Senate will take up the package. The Autism Society supports the expansion of the child tax credit that supports lower-income families caring for children at home. See more from a blog created by the Center on Budget and Policy Priorities. 

Employment 

Senators Jeane Shaheen (D-NH) and Mike Braun (R-IN) introduced the bipartisan Supporting Disabled Entrepreneurs Act (S. 3528). This bill would establish the position of Coordinator for Disabled Small Business Concerns within the Small Business Administration (SBA). The coordinator would enhance support for small businesses owned by people with disabilities across capital, counseling, and contracting programs. The bill would also collect data on disability-run small businesses and report recommendations to Congress. The bill was referred to the Senate Small Business Committee chaired by Shaheen. 

Long Covid Hearing 

On Thursday, January 18th, the Senate Health, Education, and Labor Committee held a hearing addressing long COVID.”  Long COVID is broadly defined as signs, symptoms, and conditions that continue or develop after acute COVID-19 infection. Several testified that symptoms of long COVID are equal to a chronic disability, affecting the ability of people to work, go to school, go about daily tasks, and provide for themselves. Additionally, the hearing highlighted the disproportionate impact of long COVID on people of color, with women of color being the least likely group to be diagnosed and appropriately treated. Economic repercussions were emphasized, with 4 million Americans out of work, costing around $170 billion annually. Recommendations included medical screening devices, increased awareness of pediatric long COVID, telemedicine options, and holding health plans accountable. Challenges in diagnosis and treatment were discussed, underscoring the need for research, demographic representation in clinical trials, and interdisciplinary clinics. The hearing is archived and can be viewed on the Committee website. 

Education 

The Autism Society signed on to CCD comments to the U.S. Department of Health and Human Services (HHS) in response to a Notice of Proposed Rulemaking regarding the Head Start Program Performance Standards. The proposed rule recognizes the barriers that children with disabilities face when accessing and fully participating in early childhood programs and strengthens procedures to be more inclusive and ensure high expectations for all students, including those with disabilities. 

New Proposed Rule from DOJ 

The Department of Justice (DOJ) released a new Notice of Proposed Rulemaking (NPRM) on January 12th to update Title II of the Americans with Disabilities Act (ADA). The proposed rule would improve access to medical diagnostic equipment for people with disabilities. It proposes technical standards for public entities and all of the medical care services public entities provide. For a high-level summary of the NPRM and information on how to submit comments, read the fact sheet. The Department has also issued a press release. Members of the public can submit comments on the NPRM online by February 12th, 2024. 

Dental Benefit Letter 

The Autism Society of America signed onto a Consortium for Constituents with Disabilities (CCD) letter supporting proposed changes by HHS and CMS that would allow states to add dental benefits to their Essential Health Benefits (EHB) for Marketplace coverage without having to cover the cost of the coverage. This would become a benefit that states can take on under the Affordable Care Act. This could also extend as a Medicaid benefit option in packages of states that have expanded Medicaid. Of course, it would still be an optional benefit that states could add to their packages, but it would be a great step to have some states provide dental services as an essential health benefit.  

Resources 

Direct Support Workforce 

The Bipartisan Policy Center published a report entitled “Addressing the Direct Care WorforceWorkforce Shortage: A Bipartisan Call to Action.” The report outlines recommendations for the Administration and Congress to address the shortage, including addressing wages and reimbursements, assistance to states to recruit and retain workers, providing a caregiver tax credit, and enacting targeted immigration reforms to fill labor shortages. These bipartisan recommendations can be used by federal and state advocates to make policy changes to address this severe shortage. 

Assistive Technology and Education Guidance 

IDEA, the federal special education law, requires schools to provide assistive technology devices (including communication devices) as part of a students’ individualized education plan (IEP). However, there are many misunderstandings about the law and its requirements. The U.S. Department of Education on Monday released a Myths Versus Fact Surrounding Assistive Technology Devices and Services  geared toward students, parents, teachers, therapists, and administrators to better understand these requirements. This is an important guide for families to help ensure students are getting the services they need to succeed in school. 

New Report on Housing for People with Disabilities 

The Technical Assistance Collaborative and the Consortium for Constituents with Disabilities (CCD) released their annual report entitled Priced Out: the Affordable Housing Crisis for People with Disabilities in 2024. The report found that the 4.1 million people with disabilities ages 18 to 64 who receive SSI cannot afford an apartment in any housing market in the United States without additional support. The report highlights new statistics on the housing shortage, homelessness, incarceration, and institutionalization. Overall, the report stresses that SSI is not enough for anyone to live in America.  

Family Support Issue Brief 

The National Health Law Program (NHELP) developed an issue brief outlining the options states can take to pay family caregivers. It discusses some limitations and policy considerations. Paying family caregivers for Medicaid home and community-based services (HCBS) has risen in popularity over the past several years due to provider shortages and increased use during the COVID-19 public health emergency (PHE). While many families and individuals may want this option, not all states are as eager to authorize it. This resource discusses the Medicaid options for paying family caregivers and some of the policy considerations that can help protect individual choice, support caregivers, and overall increase the pool of available supports. 

Justice Corner  

Letter on Electric Shock Devices 

In January, the Autism Society joined the Autistic Self Advocacy Network and other disability groups in a letter to the head of Health and Human Services, Secretary Xavier Becerra, urging the agency to release a proposed ban on electric skin shock devices used to treat self-injurious or aggressive behavior.  The effort to ban these devices has persisted for many years despite the FDA declaring it dangerous in 2020.  The ban was overruled by a federal court the next year. Since then, Congress has affirmed the FDA’s authority to ban the devices.  The letter urges the FDA to re-issue a ban without further delay. Most notably, the Judge Rotenberg Center in Massachusetts continues to use the devices to discipline students with behavioral health challenges.  Over the years, investigations have been conducted into the use of the practices at the Judge Rotenberg Center due to reported deaths and injuries.  Read more here: “Prisoners of the Apparatus”: The Judge Rotenberg Center – Autistic Self Advocacy Network (autisticadvocacy.org)