HR1 Medicaid Cuts: What Happened and What’s Next

/in , /by Sarah

HR1 Medicaid Cuts: What Happened and What’s Next

On July 4, the President signed into law HR1—“The Big Beautiful Bill Act,” a sweeping budget reconciliation package that makes historic cuts to healthcare, nutrition, and disability services. These revisions represent some of the most impactful and harmful changes to Medicaid and SNAP (food assistance) in recent history. They deeply affect people with disabilities, families, and communities nationwide, jeopardizing decades of progress and advocacy in disability rights.

What Does HR1 Do?

Massive Cuts to Healthcare and Nutrition

  • 17 million people are projected to lose their healthcare coverage by 2034
  • Cuts Medicaid funding to states by 20%
  • Largest cut to SNAP in U.S. history—a 20% reduction in state funding
  • Enacts work requirements for individuals age 19-64, who must work, or volunteer 80 hours a month
  • Requires more frequent eligibility verification- every 6 months rather than every 12 for adults
  • It limits how states can raise money to match their Medicaid responsibilities.

These cuts target core programs that support health, independence, and basic needs for millions of Americans—including people with intellectual and developmental disabilities (IDD).

It Costs Shifts to the States

States will now be responsible for administering these changes without funding to implement them.  They will then be forced to make difficult decisions about where cuts are made.

What Does It Mean for People with Disabilities?

While some work requirement exemptions exist:

  • Individuals on SSI or Medicaid waivers are exempt from work requirements
  • But 35% of Medicaid expansion enrollees have disabilities and do not receive SSI—they may still be subject to work rules

Even more troubling:

  • Medicaid waiver services (such as supported living, employment supports, and personal care) are considered “optional”, making them especially vulnerable under budget pressure.
  • State Legislators could respond by:
    • Narrowing eligibility for services
    • Lowering provider rates
    • Not funding new Waiver slots, which would create waitlists for services
    • Cutting services like Dental, Physical, Occupational, and Speech-language services

 Our Advocacy will be essential during the upcoming legislative session.  Our legislators need to hear from you NOW about protecting DD services!

 

 When Do These Changes Begin?

These changes are consequential, but we will not feel them all at once.  Many of the provisions in HR1 will take effect after the 2026 midterm elections. This means there is still time to raise our voices and advocate for changes before implementation begins.

Change Implementation Date
Federal guidance on HR1 Dec 31, 2025
End of ACA premium tax credits Dec 31, 2025
State compliance deadline Dec 31, 2026
Work requirements for Medicaid Dec 31, 2026
Frequent eligibility checks Dec 31, 2026
Cap on provider taxes Oct 1, 2027
End of retroactive coverage Jan 1, 2027
Reduction in State Directed Payments              2028

SNAP-related changes:

  • Work requirements (age 18–65): Start June 1, 2026
  • Child-dependent restrictions: Effective immediately (child is no longer considered a dependent at age 14 rather than age 18)
  • State cost-sharing & immigration restrictions: Begin after guidance is issued in late 2025

Reconciliation vs. Appropriations: Why This Moment Matters

You may be wondering: What’s the difference between the bill that passed (HR1) and what comes next?

HR1 passed through a special process called budget reconciliation:

  • It required only a simple majority in the Senate (51 votes)
  • It could not be filibustered, so it passed quickly with limited debate
  • It can only make cuts to mandatory services, including  Medicaid and SNAP

We are now entering the Federal Appropriations process for the fiscal year beginning Oct 1, 2025. This is a very different process:

  • Appropriations bills can be filibustered, meaning 60 votes are needed in the Senate
  • It focuses on discretionary services, not mandatory
  • This gives advocates and the public more time and power to influence what gets included—or left out
  • Lawmakers are under pressure to find bipartisan agreement

The President’s “Skinny budget proposed drastic cuts to discretionary services, including essential programs and infrastructure for the developmental disability services. But there is good news! The first drafts coming out of the Senate Appropriations Committees are mostly “flat,” and although there is a need for increases, they do not include big cuts.  Which means our continued advocacy is working—and it’s more important than ever.  The budget process still needs to move through the full Senate, and then the House will need to take up the budget bill.  Your advocacy will be essential every step of the way.

These are the discretionary budget programs we are closely tracking in the 2025–2026 Appropriations process.

 Potential Cuts to:

  • Protection & Advocacy systems (e.g., Disability Rights Washington)
  • Developmental Disabilities Councils (funds advocacy work at The Arc and Advocacy Days)
  • Centers for Independent Living
  • University Centers for Excellence in Developmental Disabilities (UCEDDs)
  • Projects of National Significance
  • Housing & Urban Development: 44% cut and conversion to block grants

Threats to IDEA (Special Education):

Funding Streams would be consolidated into a block grant that could lead to:

  • Reduced preschool programs for children with disabilities
  • Cuts to special education staff, including therapists, counselors, and paraprofessionals
  • Fewer training opportunities for school personnel

Thank You for Making a Difference

We want to extend a heartfelt thank you to every advocate who took action during the HR1 process. Your calls, emails, personal stories, and unwavering advocacy did make a difference. Because of your efforts, harmful provisions were delayed, changed, or softened. Your voice helped protect millions—and it’s needed now more than ever as we enter the appropriations phase.

What Can You Do Now?

Your voice matters. Here’s how to stay involved:

  •  Sign up for Action Alerts from The Arc of Washington and The Arc of the US
  •  Call or email or schedule a visit with your Congressional Delegation -they’re home now!
  •  Schedule a visit with your State Legislators
  •  Write a Letter to the Editor
  •  Tell your story—how has Medicaid helped you or someone you love?
  • Share updates on social media
  • Watch for our Legislative Session overviews starting in December
  • Join us for Advocacy Days starting in January

View the recording of our Medicaid Matters Update here.

The Fight Continues

This moment demands urgent, unified advocacy. The Big Beautiful Bill is a wake-up call: critical services for people with disabilities are on the line. We cannot allow these cuts to quietly reshape the future of healthcare, food access, and disability rights in America.

Stay informed. Speak out. Stand with us.

You’re invited to our Community Input Session on July 17th

/in /by Stacy Dym

On July 17th, we’re inviting our community to participate in The Arc of Washington State’s 5-year Strategic Planning process for 2025-2030. As we approach our 90th year of serving as Washington state’s oldest grassroots advocacy organization fighting for people with intellectual and developmental disabilities (IDD) and their families, we are inviting our members to join us as we look forward and plan our next steps. 

Thursday, July 17th
6:00 – 7:30 PM
zoom link sent after RSVP

This all-member meeting will be facilitated by Tim Corey. Our goal is to gather feedback from our membership about what our strategic goals should be over the next five years as a statewide organization serving people with IDD and their families across Washington state. After the meeting is completed, all input will be incorporated into the new Strategic Plan to be reviewed and approved by the board of the Arc of Washington State at the Annual Membership Meeting on September 20, 2025.

CLICK HERE TO RSVP

 

This event is intended for all members of The Arc of Washington State and our local county chapters. If you are not yet a member, your registration for this event will sign you up as a free member of the state chapter. By signing up, you are joining the ranks of a powerful grassroots movement that is  family-focused. Adding your name ensures that we are accurately representing the number of supporters of this community. Thank you for joining us for this important step in our organization’s journey!

We’ll see you there,

The Arc of Washington State

We hosted the country’s first bipartisan DD legislative symposium last week

/in /by Stacy Dym

Last week was an historic week in Washington. Despite the news swirling around us about the federal government’s proposed catastrophic cuts to Medicaid, our team was proud to gather with dozens of legislators from Washington and across the country, including North Carolina, Iowa, Arizona, Arkansas, Utah, Alaska, West Virginia, Georgia, Nevada, Kansas, Florida, and Idaho. Together, we sat down to start an essential national conversation about what comes next for policy impacting the care and treatment of people with intellectual and developmental disabilities (IDD) and their families.

Representative Jamila Taylor from Federal Way (the 30th legislative district) led the way as the co-host of our three-day gathering. Together, we pulled off the first bipartisan national Developmental Disabilities Legislative Symposium right here in Washington state. Our goal in gathering together was to identify opportunities for states to take responsibility for the IDD community within the context of the federal government’s actions. After two days of legislator discussions and presentations from national experts, Washington elected officials were joined on the third day by a large contingent of IDD community members – including  state agency staff, community leaders from the Community Advocacy Coalition, and local thought-leaders – for a deeper dive into local policy questions and round-table conversations.

“This week we established a national working cohort of legislators who will prioritize people with intellectual and developmental disabilities and their families,” said Representative Jamila Taylor in a press release about the symposium. Representative Taylor was the symposium co-host, is the chair of the bipartisan Developmental Disability (DD) Advocacy Caucus in the Washington state legislature, and is the twin sibling to her brother who has a developmental disability.

“With our national debate about the role of Medicaid and state responsibilities coming to heightened levels, Washington state’s DD Advocacy Caucus is leading the national conversation about how we can collectively call out systemically ableist, arbitrary, and oppressive policies that keep people with IDD and their families from thriving.  I am proud of the work we’ve done and am ready to move this cohort and our country forward from talk into action.”

In the coming weeks, we will have even more to share about the outcomes of our community discussions. In the meantime, I’d like to invite you to take a look at the presentation slides from our presenters and check out the photo gallery at this link.

Check out the Symposium presentations and photo gallery

CLICK HERE

A group of approximately 50 adults gathered for a group photo and smiling at the camera

This kind of gathering of community members and elected officials is an essential part of the democratic process. In order to ensure that we are building solutions that center the humanity of people with IDD, we must first start by sharing our stories and creating space for authentic connection and dialogue. I look forward to working alongside our legislative champions to address the community’s top priority issues in 2026 and beyond.

Thank you for standing alongside us as supporters of The Arc.

In community,

Stacy Dym

A group of approximately 50 adults gathered for a group photo and smiling at the camera

Washington State hosts first bipartisan national Developmental Disabilities Legislative Symposium

/in , /by Stacy Dym

FOR IMMEDIATE RELEASE:

June 18, 2025

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

 

Washington State hosts first bipartisan national Developmental Disabilities Legislative Symposium

SEATTLE, WA – Washington state Representative Jamila Taylor (D-30) convened state legislators from across the country in Seattle June 11-13, for the first bipartisan national Developmental Disabilities Legislative Symposium. Legislators worked together over three days to address critical federal and state-level policies impacting the care and treatment of people with intellectual and developmental disabilities (IDD) and their families across the country. The symposium was coordinated by The Arc of Washington State.

“This week we established a national working cohort of legislators who will prioritize people with intellectual and developmental disabilities and their families,” said Representative Jamila Taylor, symposium co-host, chair of the bipartisan Developmental Disability (DD) Advocacy Caucus in the Washington state legislature, and the twin sibling to her brother who has a developmental disability. “With our national debate about the role of Medicaid and state responsibilities coming to heightened levels, Washington state’s DD Advocacy Caucus is leading the national conversation about how we can collectively call out systemically ableist, arbitrary, and oppressive policies that keep people with IDD and their families from thriving.  I am proud of the work we’ve done and am ready to move this cohort and our country forward from talk into action.”

On Friday, June 13th, the third day of the symposium, members of the Washington IDD community were invited to join legislators for a day of roundtable conversations. Attendees discussed strategies for addressing gaps in services, storytelling for policy change, housing options, technology access, and how to meet the needs of people with IDD from diverse cultural backgrounds.

The symposium was coordinated by The Arc of Washington State, the state’s oldest grassroots advocacy organization representing people with IDD and their families. “This kind of gathering of community members and elected officials is an essential part of the democratic process,” said Stacy Dym, Executive Director of The Arc of Washington State. “In order to ensure that we are building solutions that center the humanity of people with IDD, we must first start by sharing our stories and creating space for authentic connection and dialogue. I look forward to working alongside our legislative champions to address the community’s top priority issues in 2026 and beyond.”

Representative Darya Farivar (D-46), a founding member of the Developmental Disability Advocacy Caucus, supported the logistics of the symposium. “It was a privilege to gather with so many dedicated community members and legislators to discuss issues and strategies to strengthen a responsive, community-based, person-centered system of care,” said Representative Farivar. “This gathering was an opportunity to celebrate the resilience and permanence of disability identities, the influence of cultures, and knowledge systems which have shaped and continue to impact our care systems at large. Now, we must work together to protect the civil rights and essential, life-saving services for people with IDD.”

Although DD Advocacy caucus member Representative Stephanie Barnard (R-8) was unable to attend in person, she welcomed the symposium’s attendees with a short video: “We are finally building a cohort that is dedicated to prioritizing the IDD community,” she told to legislators gathered. “Events like this create transformational change. This issue transcends party lines because we feel this to our core. Our community as a whole will benefit from our collective focus on people with developmental disabilities. Why are inclusive societies so strong? Because we’re better together.”

About The Arc of Washington State

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 has played a pivotal role in changing the public perception of disability and demanding better opportunities for every child’s future. 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 about The Arc of Washington State at arcwa.org.

###

 

Devastating Medicaid cuts revealed

/in , /by Sarah

Devastating Medicaid cuts revealed

On Mother’s Day, in the dead of night, the House of Representatives’ Commerce & Energy Committee released a plan that threatens to impose historic and harmful cuts to Medicaid. After waiting since January for details, we now see the full scope of these proposed reductions — and they are cruel and unacceptable.

The House has already begun “markup” — the review and amendment process — on this bill. The goal is to pass it next week before Memorial Day and send it to the Senate, where they hope to vote on it by July 4th. We must raise our voices now to oppose these harmful and cruel cuts. 

EMAIL Congress Today

If you want to call instead, this link below will direct you to call the Hands Off Medicaid Hotline (866-426-2631) and ask you to enter your zip code before directing you to your representative. When you leave your message, tell them that you oppose cutting Medicaid. If you benefit from Medicaid, you can also share how it would personally impact you.

Click Here to Call

Staggering Impact of the Bill:
The Congressional Budget Office projects that this bill will slash $912 billion over the next decade, with $715 billion coming directly from Medicaid and the Affordable Care Act— more than the initial target of $880 billion. These cuts will cause approximately 8.6 million people to lose their health coverage.

Who Will Be Hurt:
People with disabilities, seniors in nursing homes, and vulnerable populations will bear the brunt of these cuts. The proposed measures make it harder to maintain Medicaid coverage by adding complex administrative requirements. This means individuals who lack the time, ability, or resources to navigate paperwork will be kicked off the rolls, creating false “savings” that only lead to more illness, disability, and hardship.

How Are These Cuts Coming?
The plan increases bureaucratic hurdles that strain state budgets already under pressure from rising Medicaid costs. Washington State would be forced to divert funds to costly new infrastructure and staffing to enforce these rules. As a result, essential but “optional” services — including personal care, dental, pharmacy, therapies, and medical equipment — are at risk of significant reductions, especially for those relying on Home and Community-Based Services.

A Troubling Echo of History:
Past recessions show that Medicaid cuts lead to reduced support for older adults and people with disabilities, often resulting in worse health outcomes and increased institutionalization. For more on this history, see: What happened during the Great Recession.

What Can You Do?

  • Speak Up: Contact your Congressional representatives TODAY. Urge them to “Stop the Cuts to Medicaid!” Explain that these reductions threaten the health, independence, and dignity of millions in our communities.
  • Get Involved: Join us on Wednesday,May 21st at 7 PM for our Medicaid Webinar, where we’ll provide updates and actionable steps to protect Medicaid for those who need it most. Register Here

Together, we can stand against these unjust cuts. Protect Medicaid. Preserve vital services for individuals with disabilities.

– Cathy Murahashi, Public Policy Specialist, The Arc of Washington State

Sine Die: 2025 Legislative Session Wrap-Up

/in , /by Sarah

 

Sine Die: 2025 Legislative Session Wrap-Up

On Sunday afternoon, the gavel fell, and just like that, the 2025 legislative session came to a close. It was a session filled with highs and lows, drama, controversy, and moments so intense they were “better than TV.” In the end, a budget was passed, compromises were made, and everyone went home exhausted—but not without some hard-won victories.

Budget Highlights: Protecting Core Services for People with I/DD

As we unpack the newly passed budget, the most important news for individuals with intellectual and developmental disabilities (I/DD) is this: essential services were protected.

Despite a looming budget shortfall, we can breathe a collective sigh of relief. The legislature:

  •  Did not narrow eligibility for DDA services
  •  Did not change the CARE assessment to reduce personal care hours
  •  Did not limit waiver services
  • Did not cut provider rates

All of these were potential threats on the table—and thanks to your advocacy, they didn’t happen. Every call, email, and conversation mattered. Your work made a difference.

There were even modest investments in services, which is remarkable considering the budget shortfall.

  • A 15% rate increase for Community Respite programs, plus an additional hour of respite per month. This reflects the work done by advocates to educate legislators about the need for “more” social engagement for people with I/DD. Although this in no way addresses the entire problem, it is an acknowledgement of the need.
  • A 2% increase for Community Residential services—not enough to match inflation, but better than nothing

Capital Budget

There was a $50 million allocation from the Housing Trust Fund specifically for housing for people with I/DD—a tenfold increase from typical sessions!

Thanks to strong advocates who, over the past 2 biennia have educated legislators about the need for 37,000 units of housing for people with I/DD in Washington. This housing investment will be one of the lasting legacies of former Speaker Frank Chopp, whose leadership on this issue has been transformative. His absence will be deeply felt.

Legislative Wins: Special Education

This session brought historic changes in special education policy and funding:

  • SB 5263 – The Cap is Gone!
    School districts will now have access to funds under the special education funding formulas for all of the special education students they identify and will not be capped at 16% of their total student population. This is a game-changer, especially for small and rural districts.
  • $350 million in new investments for Special Education, including:
    • A higher funding multiplier for K–12 students
    • Relinking infant/toddler supports to K–12 funding levels
  • SB 5253 – Ending the Birthday Cliff
    Students in Special Education can now stay in school until the end of the academic year in which they turn 22, instead of being forced out on their 22nd birthday.
  • Continued funding for inclusive practices, including new demonstration sites
  • While HB 1795 (Restraint and Isolation) didn’t pass, funding was included in the budget for the “Reducing Restraints and Eliminating Isolation” training initiative for teachers and districts.

Civil Rights Progress

Some key bills passed this year will directly improve the lives of people with disabilities:

  • SB 5680 – Right to Repair Mobility Equipment
    Individuals can now repair their own equipment or use independent shops—cutting down on costly and lengthy delays from dealer-only repairs.
  • SB 5501 – Ending Unnecessary Driver’s License Requirements
    Employers can no longer require a driver’s license unless the job specifically requires driving—ensuring fair access to employment for people who don’t drive.

Other Bills of Interest

  • HB 1130 – Waiver Prioritization- This bill importantly adds “individuals over the age of 45” as a priority population. This should allow more senior families to be able to plan and receive services before they are in crisis.

Disappointments: Rainier and the Road Ahead

One of the most contentious bills of the session, SB 5393, proposed the closure of the Rainier Residential Habilitation Center. Although it technically passed, the final version was significantly weakened—redefining “closure” as simply “no new admissions.”

For many advocates, this was a bitter pill. After months of testifying, educating legislators, and waiting outside chamber doors, the final result felt like a step sideways—not forward.

The debate also revealed deeply troubling attitudes. Harmful and outdated language about people with disabilities resurfaced during testimony and floor debates, underscoring the critical need for continued education and advocacy.

It’s clear: the legislature has not yet fulfilled its promise to support a fully inclusive community. Until serious investments are made in community-based services, RHCs like Rainier will continue to exist—not because they are needed, but because the alternatives have not been adequately funded.

We at The Arc remain committed to advocating for all people with I/DD and for the services that allow every individual to live a good and meaningful life in the community.

 

What’s Next: How You Can Help

Advocacy doesn’t end when the gavel falls. Here’s how you can stay involved:

Thank Your Champions

  • Rep. Darya Farivar – for leading the charge on SB 5393 and HB 1130. She showed tremendous courage and heart in her negotiations and House floor speeches. Let her know you noticed.
  • Rep. Jamila Taylor – as chair of the Legislators’ Developmental Disabilities Caucus, her leadership was vital. Representative Taylor laid the groundwork by educating her colleagues on our issues throughout the year and was a presence in her Caucus and on the House floor whenever a bill impacted the DD Community.  Send her a thank-you note.
  • Rep. Stephanie Barnard, Senator John Braun, and Senator Paul Harris spoke up for RHC closures and ensured that 5393 was ultimately passed. Their advocacy was in opposition to others in their caucus and was notable and commendable. Send them a note thanking them for their conviction.
  • Representative Julio Cortes was also a leader on 5393; a note of encouragement would be appreciated.
  • Representative Gerry Pollet and Jamie Pedersen were champions for Special Education; tell them how much you appreciate their leadership.
  • Other bill sponsors – See our bill tracker to find out who helped and give them your appreciation.

 Educate Your Legislators

Many lawmakers lack firsthand knowledge about the needs of people with I/DD. Let’s change that.

  • Attend a town hall this summer—bring a friend, ask a question, share your story.
  • Set up a meeting with your legislator. Tell them what services mean to you and what’s still needed.
  • Engage your community—the more people who understand DD issues, the stronger our voice becomes.

 

Let’s keep the momentum going.

We did good work—but the work isn’t over.

– Cathy Murahashi

 

Upcoming Events

  • Legislative Session Recap – Wednesday, May 7 at 7 PM
    A deeper dive into the wins, losses, and what’s next.

Register here: https://us02web.zoom.us/meeting/register/ifkWptZ6RwKCCU93x1aXuA

  • Medicaid Update – Wednesday, May 21 at 7 PM
    Learn what is happening at the Federal Level and what you can do

Register here: https://us02web.zoom.us/meeting/register/K316ahZRRFaqBhqzV2BLEg

Letter to legislators from 48 organizations: Close RHCs

/in /by Cathy

The Arc of Washington State is proud to stand alongside 48 members of the Community Advocacy Coalition for Developmental Disabilities and urge legislators to support the consolidation of state-run institutions for people with intellectual and developmental disabilities, also known as Residential Habilitation Centers (RHCs).

Earlier this month, we sent this joint letter to legislators and urged them to pass SB 5393/HB 1472 and further consolidate state-run institutions, give residents the choice to transition safely into community settings as they are able, and create opportunities for investing in the community services that people with disabilities are asking for. As stated in the letter,

“It is critical that adequate services are provided in community settings. Those of us with the most complex needs can and are supported successfully in the community. All relevant research supports the fact that community settings result in improved quality of life in areas such as: integration, social participation, employment, choice-making and self-determination, quality and duration of services, contact with friends and relatives, and other indicators of quality of life.”

As community advocate and leader Shawn Latham said in his guest editorial in The News Tribune this week:

“For those of us at risk of being institutionalized, the closure of these facilities represents Washington’s ongoing commitment to moving away from segregated living and our willingness to invest in care that centers the humanity of people with disabilities.”

We urge the legislature to stand fast with their commitment.

Click here to open the PDF of the letter in a new tab.

CAC_consolidate IDD institutions_0407 2025

Disability Rights: From History to Action

/in , /by Sarah

Disability Rights: From History to Action

I love history—especially learning how movements begin, how ordinary people make extraordinary differences, and how the threads of their work are still woven into our lives today.

Recently, I watched several powerful documentaries about the civil rights movement for people with disabilities. One that stood out was “Change Not Charity,” the incredible story of how, 35 years ago, the Americans with Disabilities Act (ADA) came to be.

Watch the full documentary

Jennifer’s Climb

One of the most defining moments featured is the Capitol Crawl—when activists with disabilities, including 8-year-old Jennifer Keelan, left their wheelchairs and physically crawled up the 83 steps to the U.S. Capitol. That moment captured the urgency and power of the movement and helped push the ADA across the finish line.

Closer to home, I watched “Together We Were Stronger,”  a film that reminded me of Washington State’s own legacy in disability rights. A small group of passionate families and advocates here fought to make education a civil right for all children—regardless of ability. Their efforts helped lay the foundation for what would become the Individuals with Disabilities Education Act (IDEA), ensuring that every child has access to a free and appropriate public education.

What struck me most was this: change didn’t start with politicians. It started with people—individuals and families—telling their stories, organizing, and showing up to demand better.

If you have the time, I encourage you to watch these films. Be inspired by the advocates who came before us—and consider how we can continue their work today.

 Where Are We Now?

Despite decades of progress, many hard-won rights remain under threat—from proposed cuts to Medicaid and the Administration for Community Living, to efforts to dismantle the Department of Education, which protects the civil rights of students with disabilities under IDEA.

State Advocacy in Action

Here in Washington State, disability advocates are still fighting—and winning—important policy changes. During this legislative session, several impactful bills have passed thanks to community organizing and public testimony:

  • SB 5501 – Concerning Employer Requirements for Driving.
    Read the bill summary
    Removes the requirement to have a driver’s license for jobs that don’t involve driving—opening doors to employment for many qualified people who had previously been shut out.
  • SB 5680 – The Right to Repair Mobility Equipment
    Read the bill summary
    Gives individuals the right to repair their own wheelchairs or use independent repair shops, reducing dangerous wait times caused by backlogged dealers.

When the bill was at risk of stalling, dozens of wheelchair users showed up in person at the Executive Committee hearing—and it passed!

Amazing Advocates at the 5680 Executive Session!

Closing Institutions: A Civil Rights Issue

The Arc of Washington supports HB 1472, the bill to close Rainier and Yakima Valley Residential Habilitation Centers (RHCs).

Read the bill summary

This is about more than just policy or fiscal savings—it’s a civil rights issue.

The Arc believes that people with disabilities have the same rights as everyone else: to live, work, and participate fully in their communities. Institutional settings often restrict freedom, isolate people from society, and limit their choices. In contrast, community living empowers individuals with disabilities to make decisions about their lives, build relationships, and thrive.

Federal laws like the ADA and the Supreme Court’s Olmstead decision affirm that unnecessary institutionalization is a form of discrimination. People deserve access to services in the most integrated, least restrictive setting appropriate.

This week, self-advocates Mike Raymond and Shawn Latham were featured in a thoroughly reported article about HB 1472 written by Laurel Demkovich at Cascade PBS. Arzu Forough of Washington Autism Alliance and our own Executive Director Stacy Dym were also interviewed.

Here’s a brief excerpt from the introduction:

“Mike Raymond doesn’t remember a lot about his time at Rainier School, a habilitation center for people with intellectual and developmental disabilities.

But he still thinks about moving heavy bricks all day, serving on a fire line, and being tied to his bed. Raymond, now 78, spent 14 years at the school. He moved out at age 20, when his sister invited him to live with her.

Since then, he’s gotten married, had a child and become a staunch advocate for closing the facility where he spent all those years.

“We’ve been fighting for a long time,” said Raymond. “Shut them down.”

Read the full article here:  WA lawmakers propose closing schools for people with disabilities.

Image from Cascade PBS

Be Part of the Movement

Individuals with disabilities have faced a long struggle to obtain civil rights. Whether it’s IDEA, Section 504, the ADA, or closing institutions, the movement has always been led by strong activists who spoke up, showed up, and made change happen. And that struggle continues today.

The truth is, these inspiring advocates weren’t superheroes—they were ordinary people who wanted to make a difference and took action. By taking small actions, we ALL can make a difference.

With that in mind, will you join us today as a free Member of the Arc? By signing up, you are joining the ranks of a powerful grassroots movement that is family-focused and person-centered.

You’re saying, “Count me in. I’m an advocate for disability rights.’

BECOME A MEMBER

“Never doubt that a small group of thoughtful, committed individuals can change the world. In fact, it’s the only thing that ever has.” — Margaret Mead

-Cathy Murahashi

Exciting possibilities to come from DSHS restructuring

/in /by Stacy Dym

The Washington State Department of Social and Health Services (DSHS) recently announced a series of changes to its organizational structure effective May 1st. Their statements are included in full at the bottom of this blog.

As advocates for people with intellectual and developmental disabilities, we are excited for the possibilities that will emerge from the creation of a new state agency called The Home and Community Living Administration (HCLA), integrating home and community-based services within the Developmental Disabilities Administration (DDA) and the Aging and Long-Term Support Administration (ALTSA).

While there is still much to learn and understand about this restructuring, Washington state must move toward a future that focuses on the design of care around each individual’s needs within their home and community. Changing government systems to encourage innovative thinking, better responsiveness, and less reliance on institutional care and state-run facilities is a first step.

We are hopeful that this integration will allow for a more holistic approach to long-term care and better-focused efforts on strengthening home and community-based services. We know that habilitation services are crucial for individuals with developmental disabilities to achieve their full potential and participate fully in society.

Additionally, we are optimistic that the creation of the Behavioral Health and Habilitation Administration (BHHA) – as a result of merging the Behavioral Health Administration with the Residential Habilitation Centers – will encourage the use of these facilities primarily for crisis response and stabilization in addition to specialized evaluation and intervention rather than long-term residential placements over decades of a person’s life.

People with intellectual and developmental disabilities deserve our very best efforts to ensure they are fully included and supported in their lives in the community and free from isolation and institutional care. We stand ready to support our community of people with developmental disabilities, their families, and disability rights advocates during this hopeful transition. As stated in the announcement below, anyone with questions or input should reach out to DSHS directly at reimagine@dshs.wa.gov.

In community,

Stacy Dym

Executive Director
The Arc of Washington State

“While there is still much to learn and understand about this restructuring, Washington state must move toward a future that focuses on the design of care around each individual’s needs within their home and community. Changing government systems to encourage innovative thinking, better responsiveness, and less reliance on institutional care and state-run facilities is a first step.”

– Stacy Dym, Executive Director, The Arc of Washington State

From: DSHS RE Secretary Messages
Sent: Thursday, April 3, 2025 1:15 PM
Subject: Reimagining DSHS – Stakeholder Message

 

April 3, 2025

Dear DSHS Community Partners and Stakeholders:

I am writing to let you know about our efforts to Reimagine DSHS and best serve the people of Washington state: where we are and where we’d like to go. I would also like to invite you to help us get there. Our paramount goal remains improving access to services by identifying and removing barriers while adapting quickly to public policy shifts and ongoing fiscal uncertainty.

We have started to organize our agency in a way that makes it easier for clients and staff to get what they need, beginning with some shifts in the Office of the Secretary. Most of these are internal and will have little to no impact on our relationships.

Where we want to go

Our efforts to Reimagine DSHS must lead us to improved outcomes, make the best use of limited and rapidly changing resources, break down silos and promote self-direction and person-centered care. Now is the time to begin this work.

Beginning May 1, DSHS will create the Behavioral Health and Habilitation Administration for all DSHS clients who receive residential habilitation and behavioral health services in state-operated facilities where they reside 24 hours a day, seven days a week. This change merges the Behavioral Health Administration with the State Operated Living Alternatives and the Residential Habilitation Centers.

We also will create the Home and Community Living Administration that serves all clients who receive home and community-based services through the state’s contracted network of providers. This brings together the community side of the Developmental Disabilities Administration with the Aging and Long-Term Support Administration.

As part of the efforts to streamline business processes, smaller parts within DSHS, like the Division of Vocational Rehabilitation, will draw upon infrastructure and resources that exist in larger organizations within the department, like the Economic Services Administration.

Within this new structure, we will continue to focus on the people we serve and maintain our commitment to partnering with them, their families and our community partners.

What happens next

As of May 1, you can expect a few things outside of what was outlined above: The basic organizational structure and leadership of some areas of DSHS may be different. Some leaders and managers may have different supervisors, and you may have different points of contact, depending on which parts of DSHS you work with. Everything else will stay largely the same.

Over the next year, we’ll begin more in-depth work to Reimagine DSHS and we will seek your input in a variety of ways. We are also going to engage with tribal governments and staff as well as the people we serve, all of whom will be central to this work because of their lived experiences.

Even though this effort is happening while our state and federal funding are at the top of all our minds, it is not a budget-cutting exercise. We are working to realign and restructure DSHS in a way that measurably improves people’s experiences with our department, and we are striving to be less bureaucratic, and more welcoming of all Washingtonians, as Gov. Ferguson has challenged us to be.

Thank you again for your continued partnership and collaboration. If you have questions and input, please send them to reimagine@dshs.wa.gov. I look forward to hearing from you and sharing more with you again soon.

Fondly,

Cheryl

CHERYL STRANGE / Acting Secretary

Office of the Secretary

Washington State Department of Social and Health Services

 

From: DSHS RE Secretary Messages
Sent: Friday, April 11, 2025

 

April 11, 2025

Dear DSHS Partner and Stakeholder:

As a follow up to the Reimagine DSHS update last week, I wanted let you know who will lead the two restructured administrations, effective May 1.

Kevin Bovenkamp, currently BHA assistant secretary, will lead the Behavioral Health and Habilitation Administration that will serve DSHS clients who receive care in our state operated services and 24/7 facilities. As I noted in my April 3 update, this administration now brings together BHA with the SOLAs and the RHCs.

Bea Rector, currently ALTSA assistant secretary, will head up the Home and Community Living Administration that will serve clients who receive home and community-based services through our network of providers. This administration merges the community side of DDA with ALTSA and includes Adult Protective and Residential Care Services.

Tonik Joseph, currently DDA assistant secretary, will be assuming the role of special assistant in the Home and Community Living Administration and report to Bea. Her work will focus on the continuity of programs, services and initiatives across the two new administrations.

I want to reinforce that the May 1, reorganization is the beginning of a larger effort to enable us to support clients with multiple service needs in a more dynamic way. At this point, we are setting the framework for the future of DSHS and the real work lies ahead with opportunities for stakeholder and client engagement to reduce bureaucracy, silos and put more emphasis on supporting clients. We look forward to engaging with you, obtaining your input and perspectives on how to improve access to services as this process unfolds. Thank you for your continued partnership and support.

Fondly,

Cheryl

CHERYL STRANGE / Acting Secretary

Office of the Secretary

Washington State Department of Social and Health Services

 

Legislative Update: Wait! Just When We Thought We Were Coming to the End!

/in , /by Sarah

Legislative Update: Wait! Just When We Thought We Were Coming to the End!

On March 24th, both the House and Senate released their budgets, and we thought we were on the downhill slope of the legislative session. Then, on the afternoon of April 1st, Governor Ferguson held a press conference stating that he would not sign off on either the House or Senate budgets, citing concerns about sustainability and reliance on tax increases.

What Does This Mean?

Typically, by this stage in session, a small group of legislative leaders move behind closed doors to negotiate a final budget agreement to present to both chambers and the Governor. Now, the House and Senate must go back and adjust their budgets before moving on to the next step of negotiating with the opposite chamber to align with what the Governor will approve. If they don’t reach an agreement, the Governor may call a special session and extend the final deadline for legislators beyond April 27, the scheduled last day of this session.

For us, that means that now is not the time to ease up. Your advocacy is needed to ensure that services for people with intellectual and developmental disabilities are protected in the final budget! We need you to continue reaching out to your legislators about the importance of services for individuals with intellectual and developmental disabilities (I/DD).

Your Voice Has Been Heard—But We Must Keep Pushing!

Both the House and Senate initially protected critical services, including:

  • Maintaining eligibility for Developmental Disabilities (DD) services, ensuring continued access for those in need.
  • Preserving Personal Care hours, maintaining essential support for individuals requiring daily assistance.
  • Keeping Waiver services intact, avoiding reductions in crucial community-based supports.
  • Sustaining provider rates, preventing a decrease that could negatively impact the workforce vital to our community.

These services could now face renewed scrutiny, and we need your advocacy to safeguard them!  Tell your legislators to “Protect Essential Services”.

Small but Meaningful Investments

Despite significant budget constraints, the House and Senate acknowledged the importance of ensuring individuals with I/DD have meaningful activities. Both budgets include a “Day Habilitation” line item that provides:

  • A modest increase in rates for community respite, community engagement, and specialized habilitation (now called “Life Skills”).
  • A slight increase in monthly respite hours (by 1 or 2 hours), which, while small, is a step in the right direction.

If these services are important to you, now is the time to urge legislators to protect this funding in the final budget. If you don’t know who your legislators are, Then, give them a call and tell them which services matter most to you.

The Closure of Rainier RHC

Both the House and Senate budgets include the closure of Rainier Residential Habilitation Center (RHC). The House version also proposes closing Yakima Valley School, while keeping:

  • Overnight planned respite beds
  • Crisis stabilization beds

A big thank you to those who signed in to support SB 5393 and HB 1472! While this is a significant step forward, negotiations are still ongoing. The Arc has an info sheet as well as a resource sheet available for you to share with legislators to ensure informed decision-making.

Concerns Over Residential Services Funding

One area of concern is the lack of parity in Residential Services (Supported Living) funding. The House budget includes a 3% increase in Medicaid provider rates, while the Senate budget provides no increase at all. At a time when we need to strengthen community services, this is a serious oversight. We encourage you to reach out to your Senators and urge them to match the House’s funding level for Supported Living Medicaid provider rates

A Bright Spot: Housing Investments for the I/DD Community

We are excited to see $55 million in the Senate budget and $50 million in the House budget dedicated to developmental disabilities (DD) housing. These investments continue the momentum toward addressing the identified need for 37,000 housing units for individuals with I/DD.

It’s important to note that the Capital Budget is separate from the General Fund, meaning these housing investments are not subject to budget cuts.

The Final Push: Keep Advocating!

While we had hoped to be closer to the finish line, the Governor’s stance means we must keep up the advocacy momentum. Now is the time to make your concerns and support known to your legislators.

Stay informed by following our bill tracker and budget side by side.

At the Federal Level, Medicaid continues to be at risk.  Please continue to reach out to your Congressional Delegation and them “No Cuts to Medicaid”.

Watch our Action Alert Center for updates.

View our Medicaid Resource Page for tools you can use.

Thank you for your continued advocacy. Let’s keep pushing forward!

Save the Dates: 

Legislative Session Wrap Up Webinar

Wednesday, May 7th at 7:00 PM

Come hear how the session ended!

Register here: https://us02web.zoom.us/meeting/register/ifkWptZ6RwKCCU93x1aXuA

 

Federal Advocacy Updates Webinar

Wednesday, May 21st at 7:00 PM

Learn what is happening at the Federal Level and how you can help!

Register here: https://us02web.zoom.us/meeting/register/K316ahZRRFaqBhqzV2BLEg

 

We hope you can join us!

– Cathy Murahashi