(Washington, D.C.) – Today, U.S. Senator Patty Murray (D-WA) held a virtual roundtable with disability activists, people with disabilities, and their families—from across Washington state—about the landmark $400 billion investment in home- and community-based services (HCBS) proposed in the American Jobs Plan, which Senator Murray pushed to include. Senator Murray highlighted the importance of building a caregiving infrastructure, to ensure that every person with a disability can access the care they need to lead independent lives in their own communities—and not institutions.
Senator Murray was joined by Stacy Dym, Executive Director of The Arc of Washington state, as well as children and adults with disabilities and their families who depend on HCBS including Whitney Stohr and her son Malachi, Holly Murahashi and her mother Cathy Murahashi, Hannah Langlie, and Julie Clark.
“Every single person with a disability has the right to live an independent life in their community—and for many, that means they need access to home and community based services. These critical services ensure that people with disabilities can get the care they need to stay healthy and live their daily lives. These are the basics, the foundation that everyone needs in order to thrive, but for so many people, getting this care is an uphill battle—and that’s unacceptable,” said Senator Murray. “We need a historic investment in home and community based services and in the critical workers who provide this care and that’s exactly what the American Jobs Plan will do. I’m going to be fighting tooth and nail to get this important bill across the finish line and I’ll be taking your stories with me back to the other Washington—because together, I know we can build a more inclusive, accessible country.”
“I’m the Executive Director of The Arc of Washington State – but I’m also the sibling of someone with a developmental disability… I can say through the lens of my profession and as a family member, this investment through the American Jobs Act – of $400 Billion dollars – is unprecedented and a game changer,” said Stacy Dym, Executive Director of The Arc of Washington state. “We need a well-trained community-based workforce who make enough wages to live on and not have to work 2 or 3 jobs to make ends meet and can care for their own families. Thank you again for your tremendous, insightful understanding. As a nation, we’ve left people with developmental disabilities, their families, and caregivers behind. And we can do better.”
“As it stands in Washington state, insurance and HCBS are still restricted by income. And that leaves middle class families like us with really few options. Either we find a way to impoverish ourselves to qualify our kids for the services they need, or we receive an income waiver. Malachi received one of those waivers which qualifies him for Medicaid and home services…in Washington, there are thousands of eligible individuals waiting for waivers so they can receive those services too,” said Whitney Stohr. “Whether or not someone gets to live in their home, whether or not they have the personal care they need, whether or not their family is able to maintain economic stability, that shouldn’t be a matter of luck. It should be a matter of right.”
“I am 33 years old. I live at home with my mom and dad and brother. I have worked at one of the Microsoft Café for more than 7 years. I work 5 days a week for 4 hours a day. I ride the bus to work. I love my job and my co-workers. My job coach helps me be sure I do my job well. Someday I want to live in an apartment with my friends. I want to have a cat. I would like to have a boyfriend and get married,” said Holly Murahashi.
“Holly’s HCBS waiver has provided job coaching, personal care for her and respite to us to have a break. We won’t always be able to care for her and we need to be assured that she has the services that she needs when she needs them. We don’t want to have to wait for a crisis then have to accept a “slot” in a facility that only takes care of her “health and safety” needs. We want to be able to plan so her hopes, dreams and desires to be as independent as she is able are honored and that she continues to live a meaningful and active life in the community. We are so excited that this investment may help us breathe a bit easier,” said Cathy Murahashi.
“I am in community inclusion, a part of the supportive employment program that allows me to continue to be active in my community now that I am retired. It is still essential for me to be involved in the community. When I was in an institution, I could not do what I now can for the community. I am pleased to be in the community, to set my schedule, and be involved in whatever activities I choose. I have all the freedom that my health will allow, and I am grateful to be an active part of my community,” said Julie Clark.
“Home and community based services enable me to live a free and independent life the way I so choose… because I received home and community services, I am able to live independently in an apartment with the assistance of several caregivers,” said Hannah Langlie. “With supports like those in the American Jobs Plan, our caregivers can continue to receive union benefits and those living wages which they deserve which will prevent high turnover in crisis situations.”
Over four million older adults and people with disabilities currently receive Medicaid home and community-based services, but more than 800,000 Americans languish on wait lists, sometimes for years—making it harder for people with disabilities and older adults to live independently in their communities. The workers who provide this critical care—who are disproportionately women of color—also continue to make poverty level wages and have little to no benefits.
During the roundtable, Senator Murray stressed that we need to build a caregiving infrastructure and make a historic investment in HCBS, as President Biden proposed in the American Jobs Plan. She highlighted that this funding would help make HCBS available to every eligible American—ensuring better care for people with disabilities, better pay and benefits for care workers, and a better quality of life for Washington state families.
Senator Murray has long fought for expanded access to HCBS, and was critical in securing an estimated $12.7 billion in funding for HCBS in the American Rescue Plan, to ensure people with disabilities get the care they need during the pandemic.