When people with intellectual and developmental disabilities graduate high school, many families are left wondering what job, education and social opportunities will be available as their loved ones transition into adulthood.

In Washington, options are limited. This can leave people with disabilities isolated at home, and caregivers without any relief.

Advocates are turning to the Legislature with the hope of changing this.

“What we’re looking for is for the state to provide these services and make them more broadly available for people in the state who may not be in a position to pay for them privately,” Jim Wellman, a parent advocate with a daughter with intellectual and developmental disabilities, told a legislative committee earlier this month. 

The state offers some day programs covered by Medicaid. These include work, education and volunteer opportunities, as well as respite services, which allow people with disabilities to stay in a staffed residential setting to give their usual caregivers a break.

But only 38% of the Developmental Disabilities Administration’s clients over the age of 21 use these services, said Stacy Dym, at the Arc of Washington State, a nonprofit organization that advocates for people with intellectual and developmental disabilities.

Dym explained that limited hours, a lack of providers, and difficulties families face finding services are all barriers to people accessing this type of support.

She said Washington’s Developmental Disabilities Administration needs to create more adult day programs with additional hours – ideally providing at least 20 hours a week of programming for each eligible person.

Moving in this direction could require the state to add new covered services under waivers it has from the federal government for how it uses funding from Medicaid, the program that provides health coverage to people who are poor or disabled.

“These opportunities are missing from every element of design in Washington’s waiver system,” Dym added.

Wellman said providers of these services do exist in Washington, but they are often funded through charitable donations or by families paying out of pocket.

Providers also often lack proper funding and staff, which can lead to long waitlists.

Jodi Richey, executive director of Bridge of Promise, an organization in King County that offers day services, said running their program is expensive and the current respite care reimbursement paid out by the state only covers so much of the cost. She added that the program has to raise about $500,000 a year to cover the remaining gap. This has made it impossible for Bridge of Promise to expand services.

She said her group has a waitlist of about 100 people, and families of those who do get access often have to pay for part of the program out of pocket.

Bridge of Promise provides a wider variety of day habilitation services than what’s offered by the Developmental Disabilities Administration. Advocates want the Legislature to pass a bill that would allow these additional services to be added under the state’s Medicaid waivers. The legislation would also require covering 20 hours a week of programming for each participant.

These expanded services are already offered under Medicaid in 39 other states and the District of Columbia, Wellman said.

The day services the state offers now are limited in their hours and many families pay for part of them out of pocket because Medicaid doesn’t cover the full cost.

Two of the Developmental Disabilities Administration’s big funding requests for the 2024 legislative session, set to begin Jan. 8, are for more case resource managers and for rate increases for providers of the types of day services advocates are pushing to expand.

State Sen. Emily Randall, D-Bremerton, has firsthand experience trying to access these programs for her sister, who had complex disabilities. She said the Legislature should look at solutions like using the federal funding they get differently, going after more federal dollars and making it easier for people in the private sector to set up programs.

“We all move about the world and get to enjoy a variety of different activities,” she said. “Our neighbors with disabilities should be able to experience all of those things too.”

by Laurel Demkovich, Washington State Standard

Washington State Standard is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Washington State Standard maintains editorial independence. Contact Editor Bill Lucia for questions: info@washingtonstatestandard.com. Follow Washington State Standard on Facebook and Twitter.