The Arc Expresses Support for H.R. 2941, Recognizing the Role of Direct Support Professionals Act

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The Arc of the United States submitted a letter of support for H.R. 2941, Recognizing the Role of Direct Support Professionals Act. The legislation would urge the Office of Management and Budget (OMB) to consider including a code for direct support professionals (DSPs) in its revision of the Standard Occupational Classification (SOC) manual. The omission of a DSP SOC code leads to a lack of data on the DSP workforce, the devaluation of the profession, and likely lower reimbursement rates as a result.

The Arc Sends Letter Encouraging Swift Passage of Autism CARES Act

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The Arc expressed its strong support for the Autism CARES Act, which is critical legislation for research and training programs. The proposed bill reauthorizes the programs for another five years. The Arc encouraged the bill to pass quickly to ensure the current bill does not expire.

The Arc Responds to FDA’s Proposed Rule to Ban Electro-Stimulation Devices for Aggressive or Self-Injurious Behavior

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The Arc submitted comments to a proposed rule by the FDA to ban electrical stimulation devices for aggressive or self-injurious behavior. These devices are used by only one institution in Massachusetts, and The Arc has been fighting for decades to protect its residents from this abuse.

The Arc Sends Letter to Energy and Commerce Subcommittee Regarding the Hearing, Legislative Proposals to Increase Medicaid Access and Improve Program Integrity

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The Arc expressed its support for several bills being reviewed by the House Energy and Commerce Subcommittee on Health at a hearing on expanding access to Medicaid. The legislation reviewed included making Money Follows the Person permanent, portability of Medicaid benefits for dependents of military families, and modifications to the Medicaid buy-in program for older working adults.

The Arc Sends Letter on the Long-Term Care Workforce Support Act

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The Long-Term Care Workforce Support Act would provide major investments and protections for workers across the long-term care settings. The Arc applauded Senator Casey (D-PA) for developing legislation to address this pressing issue.

City of Grants Pass, Oregon v. Johnson

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Filed: April 3, 2024

Court: U.S. Supreme Court

Overview: Amicus brief arguing that the Eighth Amendment ban on cruel and unusual punishment prohibits cities from criminalizing conduct associated with being unhoused.

Excerpt: “People with disabilities face unique challenges and deep-rooted stigmas that increase their risk for homelessness. Less than 5% of housing in the United States is accessible for moderate mobility disabilities, and less than 1% is accessible for wheelchair use. Housing costs are prohibitive for many disabled people who rely on public assistance for basic costs of living—the average cost of a one-bedroom apartment in the United States exceeds the maximum monthly Supplemental Security Income a person can receive. Moreover, widespread housing discrimination on the basis of disability further compounds the risk of homelessness. The Ordinances’ impact on homeless people with disabilities highlights how grossly out of proportion the punishments they impose are to the severity of the offense. Simply put, criminalizing the involuntary conduct of being a homeless person without a place to sleep—in a city with no public shelters—is anathema to the decency standards of any civilized society.”

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Robertson v. District of Columbia

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Filed: 2024

Court: U.S. District Court for the District of Columbia

Plaintiffs: Parents and guardians of students with disabilities in the District and The Arc

Counsel: The Arc, Washington Lawyers’ Committee for Civil Rights and Urban Affairs, Children’s Law Center, McDermott Will & Emery

Overview: Parents and guardians of children with disabilities living in D.C., along with The Arc of the United States, filed a class action lawsuit against D.C.’s Office of the State Superintendent for Education for failing to provide safe, reliable and effective transportation to and from schools for children with disabilities, thereby denying students equal access to their education and unnecessarily segregating them from their peers.

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Food and Drug Administration v. Alliance for Hippocratic Medicine

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Filed: January 30, 2024

Court: U.S. Supreme Court

Overview: Amicus brief arguing that it is not the role of courts to substitute their evaluation of drug safety and effectiveness in place of the FDA’s expert determinations.

Excerpt: “The Fifth Circuit’s substituting its evaluation of drug safety and effectiveness for FDA’s expert determinations affects far more than the modifications to the conditions of use for the single drug at issue here. Patients and their providers depend on FDA’s determinations about safety and effectiveness and expect drugs to be available according to the terms of the FDA approval, including supplemental approval. Providers rely on FDA’s expertise-based approval of drug uses in making treatment plans, and patients depend on being able to take the drugs as prescribed by their providers. The Fifth Circuit’s ruling broadly jeopardizes the reliability of FDA’s original approvals of drugs, and the agency’s approvals of modifications to the conditions of their use. It is effectively a roadmap for other litigants seeking to overturn drug approvals or conditions of use they disfavor—whether those changes expand (as was the case here) or restrict how the drug can be used. If approved drugs or modifications to conditions of use can be so readily enjoined despite FDA’s scientific assessments, the resulting uncertainty would jeopardize patient access to drugs, particularly in cases where FDA has expanded the approved uses of a drug to cover new diseases or conditions. It could also threaten patient safety, as FDA approves modifications to conditions of use where it determines they are needed to protect patients from risks of harm. Finally, the Fifth Circuit’s decision would impair the development of new treatments, as uncertainty disincentivizes pharmaceutical manufacturers, clinicians, and patients from undertaking time-and resource-intensive clinical trials to study new drugs and new indications for approved drugs.”

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FDA v. Alliance for Hippocratic Medicine Amicus Brief

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Storytelling Toolkit for People With Disabilities and Advocates

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Your life and experiences are powerful and valuable. Sharing your story can change people’s hearts and minds.

This toolkit will help you create and share your stories to raise awareness about an issue, encourage elected officials to change laws or policies, ask people to support changes you want to make in your life, and share about what your life is like.

Download the resources below to get started!