Today the Senate introduced a modified version of the bill to repeal Obamacare and gut Medicaid. The new version still severely impacts people with disabilities’ independence and quality of life. Here is one story.
When I'm not telecommuting, I work in the San Francisco Financial District in human resources. I am also politically active and enjoy hiking. I am totally the friend who is always trying to recruit you into something, whether it's a double date, to do something on your bucket list, or to go to a protest.
I am 30 years old and have a significant disability. I rely on attendants and nursing care for at least 16 hours a day. I have a tracheostomy and come with my own “Barbie accessories”: wheelchair, ventilator at night, and other devices. Attendants come to my home or workplace throughout the day to help me with all activities of daily living. These part-time workers assist me with personal care, medical care, cooking, housekeeping, and driving me different places in my car.
I am able to receive these services through a Medicaid waiver, a program that provides nursing home-level services to people with disabilities who need them while living at home in their community. Though I work and have robust insurance coverage through my company, private insurance does not cover the services I need. I am able to access these services by purchasing Medicaid through a California program for working people with disabilities.
Historically, people who needed attendant and nursing care would need to have this care provided solely by their family, a group home, or an institution. Community-based services became available because advocates argued that people with disabilities should not have to live in an institution to receive services that could be provided at home or in other community-based settings. They argued that we had a civil right to receive services in a less restrictive environment –.
The programs themselves are not perfect. Most Medicaid waivers have a waiting list that is years long. And in many states, like California where I live, the reimbursement rates have not been updated in decades. It is very challenging to find and retain home nurses. At the same time, these programs are imperative for many people with disabilities like me. These services make it possible for me to live independently, work, and have the same basic quality of life everyone deserves.
Right now, Medicaid is under attack through legislation that would repeal the Affordable Care Act and cap and cut federal Medicaid funding. According to the nonpartisan Congressional Budget Office, the Senate bill that is now under consideration would slash $772 billion from Medicaid over the next 10 years. I know what the impact of these changes will be.
I lived for 24 years in North Carolina, where I received a lot less government support for services. I had to live at home with my family, and I relied on them for full-time help. They made sure I had everything and were absolutely loving in their care for me. At the same time, when your family is tired from providing constant support, that has a big impact on your life. And because I had a job that let me work from home, I ended up living most of my life online through a computer.
I started to stay home more and more, to the point where I realized I was very depressed. Outside of occasional doctor’s appointments, I hadn't really left the house in almost three months. A friend with a similar disability who lived in Berkeley invited me to visit her.
That trip changed my life.
I saw my friend do things that I didn't really get to do a lot back home. Things like shop in a grocery shop, cook, garden, go to art openings, or go for ice cream. I wanted to do these things, too. Seeing her live on her own with the support Medicaid offered in the state of California made me want to move to the Bay Area instantly.
Most people won't be able to move to states with more generous programs, and no state will be left unscathed by the proposed changes to Medicaid. In fact, one out of two people with disabilities live in poverty. The quality of life for people with disabilities greatly decreases when our only options are to rely on support from our families and friends or to go into an institution like a nursing home. People with disabilities are already vulnerable, frequently subject to domestic violence from family members and others. It is terrifying to think about what is going to happen with these cuts.
I want to encourage everyone to call your members of Congress and tell them you won’t stand for cuts to Medicaid. As a society, we have made so much progress over the last 20years for people with disabilities. I don't want to imagine me and my friends confined to live in nursing homes.
is a human resources professional at a major bank and a long time disability rights activist. She lives and works in the San Francisco Bay Area.
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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
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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