A crowd of over 150 Alaskans from across the state gathered on the steps of the Alaska State Capitol on Wednesday to rally and advocate for people with disabilities, their families and support services.
“What’s the key? Community!” the crowd cheered.
The Key Coalition of Alaska organized the rally as part of its 38th annual fly-in advocacy week, the first in person since before the COVID-19 pandemic. The coalition includes people with disabilities, their families, service providers, educators and advocates, said Michele Girault, the group’s president. “So we come to advocate, to tell stories of lived experience, to move public policy to enable people with disabilities to live thriving lives in the communities of their choice,” she said.
Ralliers sang original songs about “the key campaign” and community, and some carried signs reading, “Inclusion for All!”, “We Vote,” and “No more waitlists!”
“I am an advocate for people who experience disabilities like myself,” said Sara Kveum, who uses a wheelchair. She said one of the top priorities is protecting Medicaid benefits, which is jointly funded by the state and federal governments. Medicaid is now being debated by Congress and the Trump administration, amid massive federal budget cuts.
“If they cut Medicaid, not everybody is going to get their needs met. Not everybody’s going to have the correct medical coverage that they need. Not everybody’s going to be able to do the home modifications that they need,” Kveum said. “So that’s why we’re here, and that’s why we’re advocating, so that people with disabilities that are seen and unseen can get services.”
Approximately 1 in 3 working-age adult Alaskans were enrolled in Medicaid, and over half, or 57%, of Alaskan youth, and 14% of seniors, according to state data.
The coalition is also urging the state to shorten waitlist times for Medicaid programs covering home and community-based care for those with significant disabilities, said Kim Champney, executive director of the Alaska Association of Developmental Disabilities, with the ultimate goal of “building a system that doesn’t need a waitlist,” she said.
“The state is doing a Medicaid rate study right now, and that’s really great work. We need that to continue, and there’s some reforms going on in the system that’s going to help,” she said, but in the meantime there is a significant waitlist for meeting people’s needs.
“It’s a Medicaid program for people with significant disabilities so they can have a caregiver come into their home or help them on the job, or help them with transportation around the community,” Champney said. “So if they don’t have that service, they end up in a nursing home or skilled care facility … so it’s really a tenuous situation right now.”
“We are done waiting!” the crowd chanted at the demonstration. Attendees included babies in strollers, all the way up to seniors, singing in groups on the Capitol steps.
Infant learning programs are another top priority of the coalition — in particular, urging the state to expand eligibility for support services for babies and toddlers, from birth to 3 years old, who exhibit signs of development delays. Currently, Alaska has one of the highest thresholds for these ages to receive intervention services, as measured by the percentage of delay in development compared with chronological age.
“Right now, Alaska is one of two states that the eligibility is a 50% delay,” said Girault, the Key Coalition president. “We want to reduce that to 25%, to support more children. And in the end, it saves more money, because if you intervene early, then those kids don’t need special education.”
Advocates are also calling for greater funding and access for public transportation, reforms to the guardianship program, and for the installation of universal changing stations in all public buildings — adult-size changing stations that can accommodate personal care needs, regardless of height, weight or mobility.
More than 1 in 4 adults in the U.S. have some type of disability, including mobility, hearing, vision or cognition, and advocates say it’s about expanding access, care and dignity for all.
“We advocate in general, because anybody can have a disability at any time,” Girault said. “Educating in general about, ‘It’s not just today, it’s tomorrow. So let’s prepare and have services and accessibility for everyone whenever the need occurs,’ rather than having to wait for a service.”
• Corinne Smith started reporting in Alaska in 2020, serving as a radio reporter for several local stations across the state including in Petersburg, Haines, Homer and Dillingham. She spent two summers covering the Bristol Bay fishing season. Originally from Oakland, California, she got her start as a reporter, then morning show producer, at KPFA Radio in Berkeley. This article originally appeared online at alaskabeacon.com. Alaska Beacon, an affiliate of States Newsroom, is an independent, nonpartisan news organization focused on connecting Alaskans to their state government.
