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Wait list of adults with severe disabilities who need services is growing in Colorado

State eliminated wait list for children and adults who can live on their own, but adults with highest needs are waiting years.

Jenny Butler, right, library staff, joins ...
Kathryn Scott, The Denver Post
Jenny Butler, right, library staff, joins Candy Khukhu as she threads beads into a bracelet. Khukhu and other adults with developmental disabilities gather together for the “Library for All” program at the Golden Public Library on March 30, 2017 in Golden. The Golden library is one of several in Jefferson County to hold one session a month where these adults can experience crafts, games, music and more.
Jennifer Brown of The Denver Post.

It has been four years since the legislature ordered Colorado’s Medicaid department to create a plan to keep people with developmental disabilities from waiting months or even years for services.

Yet the list of adults waiting for that help has only gotten longer, now at 2,915 people compared with 2,081 people in 2015, according to a legislative briefing Thursday.

“We should be reducing the wait list,” Rep. Dave Young, D-Greeley, told state Medicaid director Gretchen Hammer. “Instead, the wait list is growing.”

“I do think the priorities have not been right.”

Hammer responded that it would cost about $200 million annually if lawmakers want to clear the wait list for adult “comprehensive” services, which average more than $70,000 per person and include 24-hour supervision, typically in a group home.

While the wait list for adults with the most severe needs has grown, Colorado has eliminated wait lists for two other long-term services programs for people with developmental and intellectual disabilities.

More than 1,700 children receive services — including help bathing, eating, therapy and other supports — at an average cost of $18,220 per year. And about 4,800 adults receive “supported living services” at a cost of $14,261 per person per year.

Young noted that while the state is “solving problems” for those two programs, it’s losing ground on helping adults who need round-the-clock care.

Hal Wright’s adult daughter Meg, who has Down syndrome, has been on the wait list for 14 years, since December 2003. Believing he and his wife might die before Meg ever reaches the top, the Wrights “decided to try to make something happen on our own,” he told lawmakers.

Wright, a retired financial planner, set Meg up in an apartment with a roommate, whose rent is reduced in exchange for notifying the Wrights if Meg is sick or needs help. The total cost for living expenses and disabilities supports — including a service to make sure she gets home safely — is about $40,000 per year. The Wrights pay the majority, minus what Meg earns working at ARC Thrift Stores and the $16,000 in Medicaid funding she receives.

Wright, testifying before the Joint House and Senate Health and Human Services Committee, said it is frustrating that children receiving services can automatically transition to adult services, jumping ahead of those who have lingered on the list for years.

Executives from Laradon and North Metro Community Services, both of which provide services to people with disabilities, suggested lawmakers move disabled adults whose caregivers are age 75 or older to the top of the wait list.

Young, a member of the Joint Budget Committee, said the proposal, as well as another to raise wages for care workers in the industry, are among those the committee might consider.