Imagine a life where every part of your day is defined, regimented, controlled by someone other than you. Where even basic decisions, like what to eat, where to go, or who to spend time with are denied you. For people with disabilities living in many residential facilities, this is the reality. Basic choices, from decisions about where to live to the opportunity to be intimate with your partner, are denied people with disabilities across the nation.
Many Americans are aware of these sorts of problems and the resulting loss of freedom faced by people with disabilities who are forced into nursing homes and other types of institutions. To address this, disability rights advocates have worked over the last 50 years to bring people out of institutional settings and into the community, fighting to expand Medicaid-funded home and community-based services, also known as HCBS.
In 2013, after decades of effort by activists and federal policymakers, the percentage of Medicaid funding spent on community-based services finally exceeded that spent on institutional care. Many states have succeeded in serving people with developmental disabilities entirely in the community, no longer relegating people with Down syndrome, intellectual disability, and other similar diagnoses to institutions. Others are working towards similar outcomes.
Unfortunately, the mindset of institutionalization still exists, even in community-based settings. A indicates that, where people with disabilities are clustered together for provider convenience, residents are deprived control over basic choices. To address this, the Obama administration issued a groundbreaking rule in 2014, requiring every state to upgrade its home and community services to ensure that those receiving them had their basic rights respected by 2019.
The HCBS settings rule included requirements that people get a choice of where they live, including the opportunity to pick residences other than group homes and other “disability-specific settings.” It also instructed states to ensure people living in residential facilities were afforded the right to choose what to do during the day, who they invited into their homes, when they ate, and whom they shared a bedroom with. These are the kinds of basic rights that most Americans take for granted — but for people with disabilities, federal intervention was necessary to protect them.
Imagine a life where every part of your day is defined, regimented, controlled by someone other than you.
The settings rule gave every state five years to work with providers and people with disabilities to reach compliance — unfortunately, it looks like that’s not going to happen. This week, President Trump’s Health and Human Services Secretary Tom Price and Center for Medicare and Medicaid Administrator Seema Verma to state governments indicating their intent to delay the rule’s implementation deadline, making the full realization of the rights of people with disabilities a dream deferred.
What’s worse, the letter indicated their intent to rollback federal oversight, deferring to state governments as to whether or not particular providers and settings were respecting the rights of people with disabilities trying to live their lives on their own terms. That’s a problem. Basic freedoms like choice, autonomy, and privacy in one’s own home shouldn’t be subject to the whims of state legislators.
This delay by Secretary Price and Administrator Verma threatens the fundamental rights of people with disabilities. It means that people’s freedom is determined based on what state they live in. In 2011, four states — Kentucky, New Hampshire, Vermont, and New Mexico — more than 90 percent of all people with developmental disabilities receiving community-based residential services in settings of three or fewer people. In the same year, five states — Illinois, Michigan, New Jersey, New York, and South Carolina — supported fewer than 30 percent of their residents in such settings, relying predominantly on more congregate group home models that restrict the freedoms of their residents.
Tom Price and Seema Verma should realize that the right to live in the community – and make basic choices about one’s own body, time, and home – should be available to every American. This week’s letter sends a message that for people with disabilities those rights are conditional. Americans with disabilities have too much experience having our freedom subject to other people’s whims.
We deserve a full and speedy implementation of the HCBS settings rule. Nothing less than our basic civil liberties is at stake.
Ari Ne’eman runs MySupport.com, an online platform connecting people with disabilities to support workers. He previously served as one of President Obama’s appointees to the National Council on Disability and as the President of the Autistic Self Advocacy Network. He currently advises the ACLU on disability policy and Medicaid.
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CaliforniaDec 2024
Disability Rights
Powers v. McDonoughPowers v. McDonough
Every night, thousands of veterans sleep without shelter on the streets of Los Angeles. Meanwhile, the Department of Veterans Affairs owns hundreds of acres of land in prime West Los Angeles—land directly adjacent to a VA medical facility that was once earmarked to house veterans, but today is instead home to private school sports fields and an oil well. In November 2022, a group of unhoused veterans and a non-profit organization filed suit alleging that the Department of Veterans Affairs (“VA”) failed to provide adequate housing and health care to veterans with severe disabilities in Los Angeles. These failures have significantly undermined veterans’ abilities to access the benefits they are entitled to by law, leaving many stranded on the streets after serving our country. The veterans sued the VA under the Rehabilitation Act, a federal statute that prohibits federal agencies from discriminating against people with disabilities. As a remedy, the plaintiffs seek the construction of significant units of permanent supportive housing on the The VA argued that a provision of the Veterans’ Judicial Review Act (“VJRA”)— a federal statute that prohibits federal district courts from second-guessing VA’s individualized benefits determinations—bars federal district courts from hearing the veterans’ Rehabilitation Act claims. Should the court accept this position, it would deprive veterans of a meaningful opportunity to have their rights under the Rehabilitation Act and other generally applicable nondiscrimination statutes enforced. -
News & CommentaryDec 2024
Criminal Law Reform
Disability Rights
Incarceration Should Not be a Death Sentence for Individuals Who Use OpioidsIncarceration Should Not be a Death Sentence for Individuals Who Use Opioids
New litigation centered on increasing access to substance-use disorder treatment in jails and prisons is helping to reduce mortality rates among incarcerated individuals. -
Press ReleaseSep 2024
Disability Rights
Criminal Law Reform
Lawsuit Challenging Armed Police Response to Mental Health Emergencies in Washington, D.C. to ProceedLawsuit Challenging Armed Police Response to Mental Health Emergencies in Washington, D.C. to Proceed
WASHINGTON — A federal judge in Washington, D.C. today rejected the District of Columbia’s motion to dismiss a lawsuit brought by the American Civil Liberties Union, the ACLU of the District of Columbia, and the law firm Sheppard Mullin. The lawsuit contends that the District’s emergency response system discriminates against people with mental health disabilities by deploying armed police officers to address the vast majority of mental health crises while sending trained medical professionals to most other health emergencies. “This ruling moves us one step closer to bringing essential, life-saving emergency mental health care to D.C. communities. Qualified providers are best equipped to handle mental health emergencies with skills and compassion; police with a gun only serve to escalate, handcuff, and arrest,” said Ashika Verriest, senior staff attorney with the ACLU’s Criminal Law Reform Project. “Far too many people are harmed at the hands of police during a mental health crisis, or simply receive ineffective care. This must end.” The plaintiff in the case is Bread for the City, a D.C.-based nonprofit supporting underserved communities. The lawsuit contends that the District’s unequal response to mental health crises violates the Americans with Disabilities Act and the Rehabilitation Act. The ruling will move the case forward, allowing the ACLU to show in court that a fully functioning mental health crisis response system that sends a medical, rather than a law enforcement, response to most mental health crises is legally required. “Relying on mental health professionals, not armed police, to serve people experiencing mental health crises is not just logical, it’s required under the law. Today’s decision made clear that communities can’t single out mental health emergencies for worse services than other health emergencies,” said Michael Perloff, staff attorney with the ACLU of the District of Columbia. The ruling comes on the heels of a recommendation made in a similar case filed against Washington County, Oregon by the ACLU, the ACLU of Oregon, Disability Rights Oregon, and Sheppard Mullin. On August 30, 2024, a federal magistrate judge recognized that sending police, rather than health providers to a mental health crisis, may be discrimination against people with mental health disabilities in violation of federal law. The magistrate judge recommended that the case proceed. More details about the case are accessible here: /cases/bread-for-the-city-v-district-of-columbia -
Press ReleaseSep 2024
Criminal Law Reform
+2 Issues
Judge Orders Supervision System in Washington, D.C. to Accommodate People with DisabilitiesJudge Orders Supervision System in Washington, D.C. to Accommodate People with Disabilities
WASHINGTON – A federal court granted a preliminary injunction yesterday in a case filed on behalf of people with disabilities on parole and supervised release in Washington, D.C., ordering immediate action to address discriminatory conditions faced by the two named plaintiffs. The court also denied the government’s motion to dismiss, allowing the case to proceed. The case, brought by the American Civil Liberties Union, ACLU of D.C., Public Defender Service for the District of Columbia, and Latham & Watkins LLP, challenges the federal government’s post-conviction supervision system in Washington, D.C. for systematically ignoring the needs of people with disabilities, thereby setting them up for failure on supervision and putting them at constant risk of sanctions, including incarceration. As the court held in its decision, such accommodations are likely required under federal disability law, specifically the Rehabilitation Act of 1973. The preliminary injunction requires that the United States Parole Commission and the Court Services and Offender Supervision Agency (CSOSA), the two federal agencies responsible for supervision in D.C., assess what reasonable accommodations the two named plaintiffs require to have an equal opportunity to succeed on supervision, and provide all such required accommodations. “Absent an injunction,” the court’s decision reads, “the Parolees will be forced to participate in the Government’s supervision programs on an unequal footing just because of their disabilities.” People on supervision in D.C. are required to comply with myriad and onerous rules. For people with disabilities, navigating these complex conditions is even more challenging. For example, Plaintiff Mr. Mathis — a 70-year-old military veteran with congestive heart failure that limits his ability to walk — struggles to travel throughout the city to attend frequent supervision meetings that often conflict with necessary medical procedures and hospitalizations. His supervision officer required him to wear an ankle monitor even after his doctor warned the monitor would jeopardize his health due to his heart condition. Plaintiff Mr. Davis, who lives with chronic pain stemming from third-degree burns as well as mental health conditions, also faces disability-related barriers getting to required meetings. Yet failing to meet any of these conditions, even something as simple as missing an appointment, can land a person back in jail or prison, even when no new criminal conduct is alleged. The court agreed that “absent immediate relief, the Parolees will face irreparable harm; namely, obstacles to success on supervision solely because of their disabilities, which expose them to downstream harms like revocation and reincarceration.” The court did not decide whether it will ultimately certify a class that could yield relief for all people on supervision in D.C. who need accommodations. Instead, the court directed the parties to agree on a schedule for further proceedings on that issue. “The undue hardships faced by people with disabilities on federal criminal supervision in the District of Columbia have gone unaddressed for too long,” said Scott Michelman, legal director, ACLU of the District of Columbia. “This decision is a victory for equal treatment and common sense.” “The Court’s opinion emphatically rejects the federal government's ‘do-nothing’ policy for people with disabilities on supervision in Washington, D.C., who have been forced to navigate onerous requirements without accommodations for decades,” said Allison Frankel, staff attorney with the ACLU Criminal Law Reform Project. “This ruling ensures that our named Plaintiffs will have the accommodations they need to have a fair shot at completing parole and remaining in their communities.“ “We are thrilled the Court recognized that the Parole Commission and CSOSA must accommodate our clients’ disabilities so that they have an equal opportunity to succeed on supervision,” said Zoé Friedland, staff attorney with the Public Defender Service for the District of Columbia. “We will keep fighting to make this relief permanent and systemic so that all people on supervision have an equal chance to succeed.” The decision on the preliminary injunction can be found here: /cases/mathis-v-united-states-parole-commission?document=Preliminary-Injunction-Opinion The complaint can be found here: /documents/w-mathis-v-united-states-parole-commission-complaint