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/

“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

—

screenshot of CAC letter to the Washinton State Legislature

Advocates urge Governor Ferguson and elected officials to reject DOJ memo threatening decades of protections for people with IDD

/in , , /by Katie Gustainis

FOR IMMEDIATE RELEASE:

August 12, 2026

CONTACT: Stacy Dym, media@arcwa.org, Executive Director of The Arc of Washington State

Advocates urge Governor Ferguson and elected officials across Washington to reject Justice Department memo threatening decades of protections for people with disabilities

OLYMPIA, WA – Advocates for the rights of people with disabilities are calling on Governor Ferguson, Attorney General Brown, the Washington State Legislature, and the Washington State Congressional Delegation to reaffirm Washington’s commitment to community integration and reject the Department of Justice opinion that seeks to narrow decades of disability civil rights protections.

On Tuesday, August 11, thirty-five Washington organizations represented by the Community Advocacy Coalition for Developmental Disabilities (CAC) sent joint letters to Washington leaders detailing their strong disagreement with the June 18 opinion issued by the U.S. Department of Justice Office of Legal Counsel. Each letter also includes the CAC’s specific requests for Washington state to respond accordingly.

Click each link below to read each letter:

CAC Letter to Gov. Ferguson and Attorney General Brown

CAC Letter to Washington Legislature

CAC Letter to Washington Congressional Delegation

The DOJ opinion blatantly attempts to subvert decades of established law in the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, and the Supreme Court’s decision in Olmstead v. L.C. The Department of Justice has argued that these federal laws did not impose an integration mandate on states and that Olmstead did not require services in the most integrated setting appropriate to a person’s needs. Although this opinion does not change law, it gives the opportunity to federal and state officials not to enforce protections found in the ADA that guarantee individuals’ with disabilities rights to community-based services.

Washington advocates are calling on Governor Ferguson and Washington’s elected officials to publicly affirm that unnecessary institutionalization is discrimination and that Washington remains committed to the principles established in Olmstead v. L.C. They are also seeking bipartisan support for legislation codifying the right of people with disabilities to live in the most integrated setting appropriate to their individual needs, modeled after Colorado’s House Bill 25-1017.

“Washington State has been a leader in disability rights for decades, and now is the time to codify our values. People with disabilities are entitled to live and thrive in their communities, alongside their families, and with the services and supports that enable them to do so with dignity,” said Representative Darya Farivar, a Democrat representing the 46th legislative district in the northeast corner of Seattle. “If the federal government is going to threaten the civil rights of our people, then it’s our job to step up and defend them. I am ready to work my colleagues in the house and across the state government to re-affirm Washington’s commitment to community integration for people with disabilities.”

In addition to the historic federal cuts to Medicaid in 2025, Washington State faces a looming $4 billion shortfall that is already threatening state services for families with disabilities. Advocates are concerned that any further reductions to the essential Home and Community-Based Services that enable people with developmental disabilities to live in their communities will increase risk of unnecessary or involuntary institutionalization.

“It unfortunately was not that long ago that people with disabilities had zero choice in how, where and with whom they’d like to live their lives. We have been fighting for decades to ensure that people with IDD are treated as fully human by our laws and our systems,” said Stacy Dym, the Executive Director of The Arc of Washington State, a founding organizational member of the Community Advocacy Coalition. “Home and Community-Based Services are more than supports; they are the reason that people with disabilities can become valued members of their communities, not people to be hidden away.”

 

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.

About the Community Advocacy Coalition for Developmental Disabilities (CAC)

The Community Advocacy Coalition for Developmental Disabilities (CAC) is a statewide alliance representing self-advocates, families, and service providers for people with intellectual and development disabilities (IDD) across Washington State. The CAC is committed to ensuring that people with IDD can live safely, participate meaningfully, and thrive in their communities. The CAC is comprised of over 50 different community-based organizations including nonprofits, private businesses, chapters of statewide nonprofit organizations, and governmental associations, councils, coalitions, boards or commissions that have a primary focus to support, serve and advocate for people with developmental disabilities.

 

###

Tell the Governor to direct DSHS: We Cannot Cut Parent to Parent

/in , /by Cathy

[Español abajo]

We need your help now. We just received unexpected news that Washington’s statewide Parent to Parent (P2P) program is at risk of losing its contract as soon as 30 days from now after 45 years of successful operation. This program is a vital resource and we cannot lose it, especially now.

If P2P is cut, families of children and adults with intellectual and developmental disabilities in all 39 Washington counties will lose their lifeline of peer support and system navigation. This cut is happening with no public announcement, no legislative vote, and no chance for families to weigh in before it’s gone.

 

It’s not the legislative session; can they make cuts?

The Governor has directed DSHS to look at all their programs and consider cuts they can make now without legislative directive because the budget outlook for the state is very grim.  Parent to Parent has been targeted for scrutiny.

 

Why Parent to Parent matters:

  • Peer support from experienced parents (“been there, done that”) provides immediate emotional relief and practical guidance at diagnosis and throughout the life course.
  • P2P helps families navigate complex systems (education, health, social services), preventing crisis and reducing long-term public costs.
  • It’s a high-impact, low-cost program that reaches families statewide — exactly the kind of investment the state should protect.

Last year’s Parent to Parent impact in Washington:

  • 92,858 calls, emails, and connections with families
  • 5,879 contacts provided in languages other than English
  • 1,056 trained parent volunteers; 622 parent support matches facilitated
  • Mailing lists reached 64,536 parents and professionals; 50+ coordinators covering every county
  • 14 dedicated multicultural support programs (including Latino and African American outreach)

This is a cut, even without a headline. Letting a contract lapse produces the same result as a budget cut — but skips the transparency and public process a formal cut would require.

 

P2P is grounded in state law and has been part of Washington’s core family support infrastructure since 1980. Ending the contract without legislative or public input undermines that statutory commitment.  This especially hurts rural families and families experiencing crisis.

 

Families are the long-term care support for individuals with developmental disabilities – tell the Governor families need to be supported. 

 

What to do — Tell the Governor to direct DSHS: “We cannot cut Parent to Parent. We must continue the statewide contract so families can keep vital peer support and navigation services.”

Take Action Now

  • First, click to use our email tool to send a message directly to the Governor and your legislators.
  • You can also call the Legislative Hotline to leave the Governor and your 3 legislators  a message at 1-800-562-6000
  • If you have time, you can also leave a message for Washington State DSHS Secretary Angela Ramirez by calling Constituent Services at (800) 737-0617 or by sending an email to askdshs@dshs.wa.gov.

Cathy, please act now, or we may see P2P services ending before the summer is over.

Thank you for your advocacy, we couldn’t do it without you.

Cathy Murahashi

Public Policy Specialist

Pídale al Gobernador que instruya al DSHS:
¡No podemos recortar a Parent to Parent!

 

Necesitamos su ayuda ahora. Acabamos de recibir una noticia inesperada: el programa estatal Padre a Padre (Parent to Parent  o P2P) de Washington corre el riesgo de perder su contrato en tan solo 30 días, después de 45 años de operación exitos. Este programa es un recurso vital para las familias y no podemos permitir que desaparezca, especialmente en este momento.

 

Si se elimina Padre a Padre, las familias de niños, jóvenes y adultos con discapacidades intelectuales y del desarrollo en los 39 condados del estado de Washington perderán una fuente esencial de apoyo entre padres y orientación para navegar los sistemas de servicios. Esta reducción está ocurriendo sin un anuncio público, sin una votación legislativa y sin la oportunidad de que las familias expresen su opinión antes de que el programa desaparezca.

 

¿No estamos fuera de la sesión legislativa? ¿Aun así pueden hacer recortes?

El Gobernador ha instruido al DSHS (Departamento de Servicios Sociales y de Salud) a revisar todos sus programas y considerar recortes que puedan realizarse sin una directiva legislativa, debido a que las perspectivas presupuestarias del estado son muy preocupantes. Padre a Padre ha sido identificado para revisión y posible eliminación.

 

¿Por qué es importante el Programa de Padre a Padre (Parent to Parent)?

  • El apoyo entre padres con experiencia (“ya hemos pasado por esto”) brinda alivio emocional inmediato y orientación práctica desde el momento del diagnóstico y a lo largo de todas las etapas de la vida.
  • Padre a Padre ayuda a las familias a navegar sistemas complejos (educación, salud y servicios), previniendo crisis y reduciendo costos públicos a largo plazo.
  • Es un programa de gran impacto y bajo costo que llega a familias en todo el estado, exactamente el tipo de inversión que el estado debería proteger.

Este fue el Impacto del Programa Padre a Padre en Washington durante el último año

  • 92,858 llamadas, correos electrónicos y conexiones con familias.
  • 5,879 apoyos brindados en idiomas distintos al inglés.
  • 1,056 padres voluntarios capacitados; se facilitaron 622 conexiones de apoyo entre padres.
  • Las listas de distribución llegaron a 64,536 padres, familiares y profesionales.
  • Más de 50 coordinadores brindando cobertura en todos los condados del estado.
  • 14 programas multiculturales dedicados al apoyo familiar, incluyendo alcance a las comunidades latinas y afroamericanas.

Esto es un recorte, aunque no aparezca en los titulares. Permitir que un contrato expire produce el mismo resultado que un recorte presupuestario, pero evita la transparencia y el proceso público que requeriría una reducción formal.

 

Padre a Padre está respaldado por la ley estatal y ha sido parte fundamental de la infraestructura de apoyo para las familias en Washington desde 1980. Terminar el contrato sin participación legislativa ni consulta pública debilita ese compromiso legal. Esto afectará especialmente a las familias rurales y a las familias que están atravesando situaciones de crisis.

Las familias son el principal apoyo a largo plazo para las personas con discapacidades del desarrollo. Dígale al Gobernador que las familias necesitan y merecen apoyo.

Qué hacer:

Pídale al Gobernador que instruya al DSHS: “No podemos eliminar a Padre a Padre (Parent to Parent). Debemos mantener el contrato estatal para que las familias continúen recibiendo servicios vitales de apoyo entre padres y orientación para navegar los sistemas.”

Muchas gracias,

Cathy Murahashi

Public Policy Specialist

Looking Back at Our History: 90 years of The Arc

/in , , /by Sarah

The first steps that built the Arc of Washington State

As part of our 90th anniversary, we are sharing some of the historical documents and artifacts that tell the story of how The Arc of Washington State began. These materials were originally collected and curated by former board member, the late Larry Jones, offering a glimpse into the people who came together to build the foundation of an organization that has now served Washington families for 90 years.

The language in these documents reflects the time in which they were written and does not reflect the language we use today. What hasn’t changed is the need for connection, advocacy, and community.

Beginning October 21, 1935, a group of parents gathered in Seattle to discuss forming an organization for families whose children lived at the State Custodial School, now know as Lakeland Village Residential Habilitation Center. This newspaper notice helped spread the word and brought together families who often felt alone in their experiences.

At the first meeting, James F. Oakley shared what inspired him to act after his own family’s experience. He spoke about wanting to help find ways to make life better for individuals living at the institution. His words reflect an idea that still resonates today: families are stronger when they support one another.

On June 4, 1936, the Children’s Benevolent League of Washington was officially incorporated by the State of Washington. That organization would later become The Arc of Washington State.

In July 1939, another set of meeting notes shows the grassroots work that followed the creation of the organization. Parents came together, made decisions, and built an organization one meeting at a time. These handwritten notes remind us of the lasting changes that often begin with people willing to show up and work together.

Ninety years later, The Arc of Washington State continues that work alongside people with intellectual and developmental disabilities, their families, and communities across the state.

Thank you for joining us in reflecting on these important moments in our history. As we continue to celebrate our 90th anniversary, we are reminded of our commitment to inclusion, advocacy, and belonging.

KING5 Story: Community services are essential

/in , , /by Katie Gustainis

“I can guarantee that our family members are here caring for our loved ones…We’re not fraudsters.”

Sandi Gruberg and her daughter Marina are speaking up and out against the claims from HHS Secretary Kennedy that all caregivers receiving Medicaid payments are abusing the system. His comments set a dangerous precedent for threats to home and community-based services that are lifelines for thousands of families and their loved ones with disabilities.

Watch or read the whole KING 5 story and share with your community: https://www.king5.com/article/news/health/parents-of-adults-with-disabilities-fear-medicaid-cuts-after-rfk-jr-comments/281-af0d144e-7b62-47ea-b989-3b0b81b0f82a

Home and community-based services are under threat, especially in light of the latest memo from the Department of Justice that contradicts almost thirty years of established law stating that community services should always be the default, preferred option over institutional settings.

The Arc of the United States has published a helpful statement to clarify what is and isn’t changing and answering some important questions for those in Washington state who want to know more: https://thearc.org/blog/doj-opinion-on-olmstead-threatens-the-right-of-people-with-disabilities-to-live-in-the-community/ 

From The Arc of the United States:

“…the U.S. Department of Justice issued a legal opinion that threatens one of the most important civil rights protections for people with disabilities: the right to live and receive services in the community, not be unnecessarily confined to institutions.

The opinion targets Olmstead v. L.C., the 1999 U.S. Supreme Court decision that recognized institutional isolation of people with disabilities as discrimination under the Americans with Disabilities Act (ADA). For more than 25 years, Olmstead has helped people with disabilities fight for the supports they need to live at home and in their communities.

This opinion isn’t a court decision. It doesn’t erase Olmstead or change Supreme Court precedent. It also doesn’t take away the ADA, Section 504, or the regulations that protect community living.

But it’s dangerous because rights mean less when the federal government refuses to enforce them. This opinion seeks to undermine one of the strongest protections people with disabilities have from being pushed into institutions when they can and want to live in the community. The DOJ itself acknowledges that this opinion is “out of step” with how federal courts have understood Olmstead.”

Read more: https://thearc.org/blog/doj-opinion-on-olmstead-threatens-the-right-of-people-with-disabilities-to-live-in-the-community/ 

2026 Election Information for Voters

/in , /by Cathy

The outcomes of the 2026 elections will play a significant role in shaping the future of our state and our nation. The Arc of Washington State is committed to helping voters make informed decisions by providing information about candidates and their positions on issues that matter to people with intellectual and developmental disabilities (I/DD) and their families.

Voter Information

To support informed voting, The Arc of Washington State has sent a questionnaire to all candidates for the Washington State Legislature  and the U.S. Congress who provided an email address. The questionnaire asks candidates to share their priorities and perspectives on issues that are important to individuals with I/DD and their families.

Candidate responses will be posted on this web page as they are received, giving voters an opportunity to learn where candidates stand before casting their ballots.

We encourage you to review the responses and use this information as one of the resources you consider when choosing the candidates who will best represent you, your family, and your community.

In this newsletter: the latest news about disability advocacy in Washington State

/in , , /by Cathy

We’re about a month out from the legislative session, but that doesn’t mean things are quiet. Here’s what’s happening and what to watch that matters for people with IDD and loved ones.

Responding to Harmful Language

Thank you to Senator Claire Wilson, Shawn Latham (SAIL), and Kendra Wolf (People First) for publishing an important op-ed in the Seattle Times responding to Representative Leonard Christian’s use of the “R” word on the House floor — and why the problem is deeper than a single offensive word. Read it here.

Budgets, bills, and two key vetoes

 

Good news! The Governor signed all our priority bills that passed the legislature, and he approved the budget.  There were two vetoes in the budget that affect developmental disability services (DDCS/DDA) specifically.

VETO: Dental services at RHCs proviso
A budget proviso directed DSHS to pilot the use of dental capacity at Residential Habilitation Centers (RHCs) for people with IDD living in the community. The Governor vetoed that proviso but made two remarkable acknowledgements:

“Two of the four residential habilitation centers are expected to close once the census reaches a certain threshold, making this only a temporary solution to a long-term barrier to community services.” 

The Governor also recognized the extraordinary barriers to receiving dental services for people with IDD and the need for long-term solutions. He then directed the Department of Social and Health Services and the Health Care Authority, in partnership with representatives from the dentistry profession, “to continue to develop a plan to expand access to dental services for individuals with developmental disabilities in the community. This plan must align with the state’s commitment to community-based living by exploring sustainable solutions for providers in the same communities in which these clients reside.” That planning directive offers hope for real and sustainable solutions.

VETO: DSHS Re-organization
The Governor also vetoed budget language authorizing the Department of Social and Health Services (DSHS) “re-imagine” reorganization project because the Legislature did not pass implementing legislation or provide funding for it. So what does that mean? Everything old is new again.

Just when you think you have the new acronym down, the Developmental Disabilities Community Services DDCS is now back to being an administration, and the name has reverted to The Developmental Disabilities Administration (DDA).

The Rollback: DDA is back

DSHS is increasingly concerned about unnecessary scrutiny from Federal agencies (Centers for Medicare and Medicaid Services), and that the changes, especially without direction from the legislature, may make them a target that could put their federal matching dollars at risk. So, the DDA rollback is an effort to simplify and avoid complicating things too much.

Leadership  update 

Dana Phelps is the new DDA Assistant Secretary. She previously led the Division of Vocational Rehabilitation and has 35 year at DSHS in roles including juvenile justice, child welfare and legislative leadership.  You can read Dana’s introductory note here.

Reimagine DSHS: Frequently Asked Questions | DSHS

What can we expect?

Beyond the name change, you should not see differences- your service providers or your case manager will remain the same.  We heard from leadership that they will continue to work together as a team, and their commitment to the principles around re-imagine for better coordination and easier access has not changed.

Bea Rector, Assistant Secretary of HCLA had this to say:“The takeaway from this message is that while we are making this necessary change, please know that our commitment to you, and the people we serve, remains the same.”

Why the 10-year strategic plan matters

With these organizational changes underway, the 10-year strategic plan for developmental disabilities is more important now than ever. We were able to secure funding this past session to make this plan happen, and now we have is an opportunity to shape the future of our services and determine the best path forward to ensure that our community services are robust. The hope is that in 10 years, we will look back and see that true progress has been made toward accessible services that provide inclusion and a full life for individuals with IDD.

Federal concerns: family caregivers and Medicaid

At the Federal level, there have been serious concerns about comments made by Health and Human Services (HHS) Secretary, Robert F. Kennedy Jr., and the Center for Medicare and Medicaid (CMS) Secretary, Mehmet Oz, regarding family caregivers taht characterize paying them as wasteful, fraudulent, or abusive and suggest families should provide care for free.  The pushback has been swift from both disability advocacy organizations and families.

Family caregivers are the backbone of our care system, especially as we face a national workforce crisis.  Their work isn’t just a service; it is what prevents our loved ones from being forced into costly, restrictive institutions. When individuals have the right to choose their own providers—including their own family—it gives them the opportunity to be independent and have access to the community they deserve.  Family providers are a vital win-win for both families and the system.

Washington families sue the state

Family caregivers are in the spotlight closer to home. Families of children with IDD are suing Washington state, alleging the state fails to ensure that Medicaid-eligible children receive the nursing and care services they qualify for. The outcome desired is that parents of minor children who receive personal care or nursing hours could be paid for caring for their loved one.

Read more about the lawsuit here.

The next few months will be important- for federal issues, the reorganization of DDA and the beginning of the 10-year strategic planning that will shape services for years to come. Stay engages: watch for alerts, reach out to legislators, and stay connected to ensure community-based, quality servvices for people with IDD remain the priority.

 

In Community,

Cathy Murahashi

Public Policy Specialist

The Arc of Washington State

The Arc of Washington State responds to Kennedy’s comments about family caregivers

/in , /by Katie Gustainis

Statement by Stacy Dym, Executive Director of The Arc of Washington State, regarding Kennedy’s comments about community-based services and family caregivers

“The recent statements by HHS Secretary Robert F. Kennedy Jr. and CMS Administrator Mehmet Oz are a gross misrepresentation of the essential support provided by family caregivers in our country. In Washington state, seventy-eight percent of people with intellectual and developmental disabilities (IDD) live with and receive care from a parent or a relative. The systems we have to provide the most basic services for people with intellectual and developmental disabilities are barely sufficient to meet family’s needs. For the parents and family members who provide life-giving care to their loved ones with IDD, financial compensation through Medicaid is often the only reliable option for caregiving.

The value of family caregivers is immeasurable. Kennedy’s claims of widespread fraud by family members are unsupported at best and harmful at worst.

Despite the harmful national rhetoric, Washington state has rightly prioritized investments in community-based services as we continue our decades-long transition away from isolating and outdated institutional care. The Arc of Washington State stands with family caregivers and we urge the federal government to refrain from misrepresenting the invaluable care they provide every day.”

For questions, please contact our team at media@arcwa.org.