Texas v Kennedy: What it means for community services for people with disabilities

/in /by Katie Gustainis

The Arc of Washington state agrees with the below statement from leading national disability organizations on the recent settlement of Texas v. Kennedy:

National Disability Organizations Condemn the Federal Government’s Abandonment of Its Commitment to Community Integration for People with Disabilities, as Approved by the Court in Texas v. Kennedy

“Yesterday, the U.S. District Court for the Northern District of Texas granted an order implementing a settlement between the federal government, Texas, and four other states. The court order vacates provisions referencing the longstanding right to community integration for people with disabilities in the U.S. Department of Health and Human Services (HHS) regulations implementing Section 504 of the Rehabilitation Act of 1973. Section 504 prohibits discrimination on the basis of disability in federally funded programs. The federal government’s Section 504 regulations have included integration provisions since 1977. The court’s order in Texas v. Kennedy accepting the parties’ agreement breaks with decades of caselaw recognizing and upholding the right of people with disabilities to live, learn, and work in their communities.

We strongly and unequivocally condemn the federal government’s abandonment of its duty to enforce the right of people with disabilities to live in their own homes and communities.

The court’s order does not impact other portions of the 2024 HHS Section 504 Rule or any other agency’s disability rights regulations. Nor does it change the statutory requirements in Section 504 of the Rehabilitation Act. Longstanding legal precedent across the country makes clear that federal law requires state and local governments to provide services in the most integrated setting appropriate and prohibit the unnecessary institutionalization and segregation of people with disabilities.

We will not go back.”

This statement was created by The Arc of the United States, Bazelon Center for Mental Health Law, Center for Public Representation, Disability Rights Education & Defense Fund, Justice in Aging, the National Health Law Program, and American Civil Liberties Union, with contributions by Alison Barkoff, Hirsh Health Law and Policy Associate Professor, George Washington University.

Dignity for every child: Our statement on the actions of hospital staff towards the Yeremeyev family

/in , /by Katie Gustainis

The Arc of Washington State is heartbroken and outraged by the account reported this week by The Seattle Times.

In September 2024, Aleksandr and Nataliya Yeremeyev were visiting Salem, Oregon, when their 8-month-old son became acutely ill. He was born with Down syndrome and other significant health conditions, and had already spent most of his short life in a hospital. He died at Salem Health.

According to the family’s lawsuit, what followed was unthinkable. They allege that hospital staff kept them from their son while they waited for a medical examiner who never came, told them a funeral home would be “too expensive,” and then directed them to lay their baby’s body across the back seat of their car and drive four hours home to Seattle. They left with a handwritten note on a prescription pad as the only record of his death. Washington’s Department of Health notes that transporting remains into the state without a burial-transit permit is against state law.

Salem Health has said it followed the family’s wishes, hospital policy, and Oregon law. The court will weigh the facts. But the core question the family’s attorneys have asked is one our community cannot ignore: why were these particular parents treated this way?

People with intellectual and developmental disabilities, and their families, know too well what it means to have a life treated as worth less. We see it in denied treatments, in “do not resuscitate” pressures, and in the quiet assumptions that shape decisions about care. Whether or not disability bias played a role here, this family deserved compassion, clear guidance, and basic dignity. By their account, they received none of it.

We are calling for answers from Salem Health about the policies and decisions that led to this family’s experience, including whether their son’s disability influenced how he and his family were treated.  Oregon health authorities must review its hospital procedures when a patient from out of state dies, so no family is ever again left to transport a loved one on their own.  This should lead to a  commitment from every hospital to treat people with disabilities, and their families, with equal dignity at every stage of care, including at the end of life.

To the Yeremeyev family: we are so sorry. Your son mattered. We stand with you.

Seattle Times article:  https://www.seattletimes.com/seattle-news/law-justice/hospital-staff-made-seattle-family-drive-dead-son-home-lawsuit-says/

Tell the Governor & Legislators to Reject Proposed Eligibility Cuts for People with Developmental Disabilities

/in /by Cathy

 

The legislative session doesn’t begin until January, but the fight over the 2027–2029 budget has already started, and we need your voice now.

State agencies have submitted their budget decision packages to the Governor, who will decide in the coming weeks which to include in his budget proposal. One of those proposals would be devastating for people with intellectual and developmental disabilities (IDD).

THE PROPOSAL

Beginning in 2029, the state would restrict eligibility for long-term care services, including Home and Community-Based Services waivers and Personal Care. It is framed as a cost-saving measure. In reality, it would strip services from thousands of Washingtonians and cost the state more in the long run.

WHO WOULD LOSE SERVICES

An estimated 2,655 people would no longer qualify. Because many receive more than one service, the impacts overlap:

  • 195 adults and children in Community Residential Services or State Operated Community Residential (SOCR) settings
  • 471 people receiving Personal Care services
  • 874 people on the Individual & Family Services Waiver, living at home with family
  • 1,170 people receiving Supported Employment and/or Community Inclusion services
  • 325 people receiving respite (non-waiver, out-of-home, or in an Adult Family Home) or licensed staff residential services

Still unknown: how many DDA clients in Adult Family Homes would lose services, and how many adults and children would lose Medicaid coverage altogether when they lose their waiver.

WHY THIS MATTERS

Because the new criteria would apply to both DDA and Long-Term Care services, people living in residential settings would have nowhere else to turn. Many no longer have family able to care for them. Where are they supposed to go?

We know how this ends: people lose their homes, their supports, and their stability. The state then pays more, through emergency rooms, hospitals, jails, and crisis systems, than it ever saved. The human cost is higher still.

Our state has a moral obligation to care for this population. Cutting people from the services that keep them housed and safe is not a budget solution. It is abandonment.

THESE CUTS ARE NOT FINAL. The Governor has not yet released his budget, and the Legislature has not voted. With your help, we can stop them.

Read more about the proposed cuts here.

WHAT YOU CAN DO TODAY

Contact the Governor and your legislators. Tell them:

“Do NOT change eligibility for people with developmental disabilities. People depend on these services to live, work, and participate in their communities. Please reject any decision package that restricts long-term care or DDA eligibility.”

If you or a family member would be affected, say so. Personal stories are the most powerful tool we have.

  • EMAIL: click to use our email tool to send a message directly to the Governor.
  • PHONE: You can also call the Legislative Hotline to leave the Governor and your 3 legislators a message at 1-800-562-6000. Tell them to support legislation that would ensure Washington residents have the right to community-based care.

“Catastrophic impacts.” | Statement on DSHS Agency Budget Requests

/in , , /by Katie Gustainis

Date: September 16, 2025

Contact: Katie Gustainis, media@arcwa.org, 940-390-3039

The following statement in response to the DSHS budget requests released on September 14, 2026 may be attributed to Stacy Dym, Executive Director of The Arc of Washington State, the state’s oldest grassroots organization advocating for the rights and inclusion of people with intellectual and developmental disabilities (IDD) and their families since 1936:

“The Department of Social and Services (DSHS) is proposing to change the eligibility requirements to narrow the number of people who qualify for disability services – unfortunately, they are clear-eyed about the catastrophic impacts these changes will have for the 2,655 identified individuals with disabilities who would no longer qualify for support.

The implication that these cuts will save the state money is deeply misleading. The Developmental Disabilities Administration (DDA) explicitly calls out the expected impacts in their budget request:

‘The most serious consequence falls on clients residing in residential facilities because their housing is contingent upon their eligibility. For clients who have no home to return to, no available family or informal caregiver, and insufficient income to maintain housing, loss of eligibility may result in housing insecurity.’

Although similar eligibility changes were proposed last year, the legislature refused to accept them despite facing yet another difficult budget debate. It is incredibly frustrating to see DSHS bring this proposal back to the table.

Individuals with intellectual and developmental disabilities (IDD) rely on essential services from a network of state and federal agencies in order to live in their community free from isolation and institutional care. Unfortunately, cutting community services will end up costing the state and taxpayers more. A reduction in the number of people with disabilities who can receive Home and Community Based Services (HCBS) will simply shift and multiply those costs as thousands of individuals are pushed into crisis and end up in hospitals, more expensive congregate settings, or unfit environments for their care.

Changes to eligibility like this proposal call into question Washington state’s commitment to serving our most vulnerable residents in the most integrated setting appropriate to their individual needs. It was just two weeks ago that Governor Ferguson publicly condemned the federal government’s actions that are risking the return of involuntary institutionalization for people with disabilities. And as his office warns people about the impending Medicaid cuts, these state eligibility changes will actually cause the loss of Medicaid eligibility for hundreds of families, adding salt to the wound.

Unfortunately, the proposed agency requests did not include any proposed savings by transitioning the residents of the increasingly expensive Residential Habilitaiton Centers (RHCs) to more affordable and appropriate care in their communities – an option that reduces costs and ensures no one loses services. This proposal puts thousands of individuals at risk of institutionalization and demonstrates how desperately Washington needs to enshrine the right to community-based care into law before the federal government completely erodes it.”

 

For reference:

Developmental Disability Administration (DDA) Decision Package: https://drive.google.com/file/d/1i6Z-40vaHhOu6FFNHwDvaEazFAKunYB6/view

According to the DDA Decision Package, 2655 distinct individuals would no longer qualify for services

  • 195 adults/children currently receiving Community Residential Services or a State Operated Community Residential
  • 471 individuals receiving personal care
  • 874 individuals receiving Individual & Family Services Waiver (living with families)
  • 1170 receiving Supported Employment and/or Community Inclusion Services
  • 325 individuals receiving non-waiver respite, out-of-home respite, respite in an AFH, or Licensed staff residential

Unknown at this time:

  • The number of  DDA individuals in Adult Family Homes that would lose services
  • The number of DDA individuals who would lose access to Medicaid with loss of the waiver.

 

Home and Community Living Administration (HCLA) Decision Package: https://drive.google.com/file/d/1RZzHycQwP-x4hXIc9JCWIbmb7LUhYMPx/view

 

About The Arc of Washington State

The Arc of Washington State is the state’s oldest grassroots organization advocating for the rights and inclusion of people with intellectual and developmental disabilities (IDD) and their families for over 90 years.

In 1936, The Arc of Washington State was formed by parents of institutionalized children with intellectual/developmental disabilities (IDD) who believed their children deserved more – to be included in their communities and to pursue fulfillment and happiness just like everyone else. The Arc’s mission is to promote and protect the human rights of people with intellectual and developmental disabilities and actively support their full inclusion and participation in the community throughout their lifetimes. Learn more at arcwa.org .

Contact: Katie Gustainis, media@arcwa.org, 940-390-3039

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