I Fought for My Daughter to Live at Home, And Congress Wants to Take That Away From People With Disabilities
Being a mother has been one of the most gratifying roles of my life. As many parents will attest, there sometimes comes a moment in parenting where you discover strength you didn’t know you had — all because your child needs you.
For me, that moment began 39 years ago when my daughter Katie contracted viral encephalitis, an inflammation of the brain at just four months old. It compromised her tiny immune system and did irreversible damage to her body, requiring her to use a ventilator to breathe and leaving her partially paralyzed. Because of Medicaid rules at the time, we could not take Katie home to manage her care, as we wished, but instead, we were forced to keep her hospitalized for three years as we fought the system.
Our family reached out to everyone until eventually word of Katie’s plight reached President Ronald Reagan himself, who created the Katie Beckett Waiver in an act of compassionate conservatism. The creation of a new federal program allowed people with disabilities to use Medicaid dollars to get health care while living in the community. Ultimately, the Katie Beckett Waiver took effect and Katie came home.
Under the waiver, Katie and so many other children like her could qualify for federal support to get the care they need to thrive and live at home. Katie was able to do this for 34 years — she passed in 2012 — more than three times the age doctors said she would reach. She received home health care that allowed her to attend college, get a job, help advocate for others with special health care needs, and, most of all, live a healthy, happy, and independent life.
The Katie Beckett Waiver also saved health care costs for taxpayers. Katie alone saved federal government hundreds of thousands of dollars in Medicaid funds for the first 10 years of her life since she was home instead of in a hospital. This was because it was less costly and better for her health to have her with us, getting the one-on-one therapy and assistance she needed to be able to live independently. This waiver meant so much for us and for Katie that I proudly display “waiver mom” in my email address to this day.
Unfortunately, Congress is now considering major cuts to federal Medicaid funding that would put the future of people like Katie at risk. Bills in the House and Senate each propose to slash billions of dollars from Medicaid over the next 10 years. What most people don’t realize is that states can limit how many people receive home and community-based services, forcing people with disabilities to wait years before they can access them. And since Medicaid law prohibits states from running a waiting list for care in an institution, this means that these Medicaid cuts will fall mainly on in-home care. This would force people with disabilities to accept institutionalization to get vital, life-saving supports. Families would once again have to visit their loved ones in institutions and hospitals instead of living with them at home.
It’s unacceptable to Katie’s memory and to people with disabilities across the country that the services I fought so hard for are now being threatened by Republican members of Congress. We cannot anticipate future needs, which is why it is so important to preserve the Medicaid program. It needs to continue to be there when people need it the most. All people who receive care from the traditional Medicaid program and those who access home care through Medicaid waivers will be hurt by the changes being debated in the Senate right now.
I urge our elected officials to help protect my daughter’s legacy and people with disabilities’ future by preserving Medicaid. The Senate is voting tomorrow on a motion to proceed that would allow them to begin the process of repealing the ACA and gutting Medicaid. We must stop this bill. Please call, email, visit, join a rally. A parent’s strength is a powerful thing, and it’s time for all parents to come together to tell Congress to save Medicaid for people with disabilities.
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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