The Medicaid program provides 24/7 care for adults with developmental and intellectual disabilities. The average wait is currently eight years.

ike most people in their 20s, Brennan Froehlke wants to move out of his parents’ house and share a place with friends.

His parents, Margaret and Bob Froehlke, have been meticulously planning for the day for more than 12 years. That’s how long ago they signed up for a developmental and intellectual disabilities program –– called the DD Medicaid waiver –– that would provide 26-year-old Brennan, who has Down syndrome and autism, with 24/7 care and would enable him to live with the support he needs outside the family home.

“We have worked hard to make a plan for Brennan, but we can’t act on it until we get the waiver,” said Margaret Froehlke, Brennan’s mother and primary caregiver. “We can’t set a timeframe or goal. We have no answers, and we don’t know if we are planning for a pipe dream. It’s very frustrating.”

“… I haven’t lost hope. I know a lot of families have, maybe I should, too,” she added. “But I believe that the state is going to come through because it’s the right thing to do.”

Brennan Froehlke shows off his latest artwork, which he made during a day program at the Wellspring Community in Castle Rock. (Moe Clark, The Colorado Sun)

Six years ago, Colorado lawmakers set 2020 as the year the state would clear the waitlists for all Medicaid waiver programs for people with disabilities. That didn’t happen.

In 2014, when lawmakers crafted the plan, analysts predicted it would cost $190 million per year for five years to end the waiting. The legislation, however, did not come with automatic funding. At the time, a combined 10,862 children and adults were waiting for one of six programs, which range from occasional in-home help and transportation to round-the-clock care.

Today, there are still 4,213 people waiting for a waiver –– 2,895 of them for the DD Medicaid waiver, the most intensive program for adults.

The average wait time is now eight years for that waiver –– down from 15 in 2014, when the law was passed. The number of people waiting for the waiver almost doubled in the same period, to 2,895 people from 1,454.

But, in good news, as the waitlist has grown, so has the number of adults enrolled in the program. Today, 6,029 individuals with developmental or intellectual disabilities receive the DD waiver, up from 4,848 six years ago.

“The developmental disabilities waiver, because it is so comprehensive in terms of providing residential support, is especially important in terms of providing families with the security that their loved one will be cared for into the indefinite future,” said Ellen Jensby, public policy director for the disabilities advocacy group Alliance Colorado.

The adult, round-the-clock program is the most expensive of all the waiver programs, with an expected cost of $507 million this fiscal year.

Margaret Froehlke adjusts her son Brennan’s tracking device, which she has used a few times to find him. “Thankfully, he’s been found safe every time,” she said. (Moe Clark, The Colorado Sun)

“The DD waitlist is an issue that’s been a problem for a very long time. It’s the most fundamental service the state should provide for our most vulnerable population,” said Rep. Alec Garnett, D-Denver, who helped draft the bill in 2014.

“The (Joint Budget Committee) has shown a willingness to dig in to put a pact in place to address this issue. I’m hopeful that we will get to a place this year to make it happen.”

It would cost $315 million to eliminate the DD waiver waitlist within six years, by 2026, according to a recent presentation to lawmakers by the Colorado Department of Health Care Policy and Financing. The department’s budget request for next year includes a $35 million increase in program funding, in part so people with the most severe needs can continue to jump to the head of the line.

“This has been a long-standing priority for the disability community in Colorado, going back to 2008, but even earlier than that,” said Josh Rael, executive director of Alliance Colorado. “I hope that this is the year.”

Advocates of the “End the Wait” campaign, which aims to end the DD Medicaid waitlist for individuals with developmental and intellectual disabilities, gathered at the state Capitol on Jan. 22, 2020, to get an update about the program. (Provided by Alliance Colorado.)

Even though more people are getting services, the waitlist is still growing.

Every year, the state Department of Health Care Policy and Financing reports the progress it has made in decreasing the waitlist for the DD Medicaid waiver, which is funded by state and federal dollars.

This year, more than 400 people – almost all wearing blue shirts with the words “End the Wait” printed on the back – packed into a crowded committee room to listen and give testimony about the status of the waitlist.

Brennan Froehlke was one of those who testified, along with his parents. When he started talking, his mother said, people started listening.

“I don’t understand why that doesn’t translate to finding the money to support this. We pay taxes to support the most vulnerable among us,” she said. “We are supposed to look after each other. This shouldn’t be a political problem.”

Since 2014, Colorado has cleared the waitlist for four waiver programs. The two that still have waitlists are the DD waiver and the family supportive services waiver, for parents raising children with disabilities.

The Medicaid waiver programs, part of a national effort beginning in the 1970s and 1980s to serve people with disabilities within the community instead of institutions, are called “waivers” because people are eligible for Medicaid funding to live in a hospital or facility but would rather live in the community.

About 86% of those waiting for the DD waiver are receiving services through one of the other Medicaid programs, most often a program called supportive-living services, which includes personal care, transportation and life skills training, and costs on average about $17,000 per year per person. That compares with $79,500 per year for people in the adult developmental disability program, which includes 24/7 care in a group home or a family home.

Brennan Froehlke and his mom, Margaret, relax on the couch after a busy weekend with family. Brennan recently had surgery on his foot. (Moe Clark, The Colorado Sun)

Brennan Froehlke currently receives the supportive-living services waiver, which helps pay for his day programs at the Wellspring Community in Castle Rock.

“A lot of families have not made plans for their loved ones because of the uncertainty of the DD waiver as a resource,” said Margaret Froehlke. “And it’s hard to think of not having the resources our adult children will need well beyond our lifetime. It’s really hard, and I can’t imagine what it would be like with just one parent.”

One reason the waitlist has grown is because more people have signed up for it after realizing the list has actually been moving, unlike in past years when Coloradans were told the wait was decades long, said Bonnie Silva, director of the Office of Community Living at the Colorado Department of Health Care Policy and Financing, which includes the Medicaid program.

“Families saw, for the first time in decades, that this list is worth getting on,” she said.

Jensby, with Alliance Colorado, says that by having a waitlist to begin with, the state has created a scarcity mentality for people and their families.

“What has historically happened is that as soon as a child is identified as having an intellectual or developmental disability, families are encouraged to put them on the waiting list, so that a decade down the road or however long, they can be closer to the top of the list to get one of the waivers once they reach adulthood,” Jensby said.

Some recent changes to the waitlist aim to make the process more equitable, and meet the needs of the most vulnerable individuals first.

The department used to let new people in the program just once a year. Now, thanks to better budget forecasting, a new person is added when someone in the program dies or moves away. The department also set new rules to allow individuals to skip to the front of the line.

Children who are in the most intense program, with in-home support services, instantly move into the adult program when they turn 18. In the past, those children had to join a waiting list that was years or decades long.

Others who can jump to the front of the line include children with disabilities who age out of the foster care system at 18 and people who otherwise would face homelessness. The department can also authorize immediate enrollment for adults whose parents are growing too old to care for them.

Before the rule changes, Colorado didn’t “have a way to be responsive to this crisis until it was full-blown,” said Silva, with the Medicaid program.

The waitlist of 2,895 does not even include everyone who is eligible. The department keeps what state officials call a “safety-net list,” which now has 4,221 names of those who are eligible for the program but are not yet on the waitlist.

“The 2,895 number is not the entire landscape of people who need those services,” Silva said.

Brennan Froehlke shows a piece of pottery he made during a day program at the Wellspring Community center, which provides educational programming for individuals with developmental and intellectual disabilities. (Moe Clark, The Colorado Sun)

The program needs more money, and more trained providers

Rep. Daneya Esgar, a Democrat from Pueblo who is chair of the Joint Budget Committee, said lawmakers are drafting a bill to address the waitlist. She was not ready to give specifics.

“In 2014, the legislature asked the state to come up with a plan to move people off the waiting list,” Esgar said in an email. “Our bill is following through on that promise.”

She says the bill, which she expects to be introduced in late February or early March, will also look to increase the pay for the service providers who provide in-home care or operate group homes for people with disabilities and are paid by Medicaid. Part of the reason the waitlist is so long is that there aren’t enough providers.

For years, providers have complained about low reimbursement from Medicaid. The state has invested $65 million in the past five years to boost those rates.

Minimum wage increases and inflation have made it harder for Medicaid providers to recruit and retain employees, said Jensby, of Alliance.

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“Our members compete with the same employment pool as fast-food restaurants or other minimum-wage employers, but the job duties of these direct-support professionals are so much more complex and come with a much higher degree of responsibilities. They are literally protecting the health and welfare and life of the person they serve,” Jensby said.

Any plan to eliminate the waiting list should come with pay increases for workers in the disability community, she said.

It’s hard for Margaret Froehlke, 61, to imagine the day when Brennan finally receives the waiver that would allow him to live on his own. She said she feels conflicted. But she knows that she and her husband won’t be alive to take care of their son forever.

“I want to know that Brennan will be in a stable and healthy living situation when we are gone,” she said. “But it’s going to be very hard… to not have him with me. It will be hard, but it will be an absolute relief.”