Joni Krickbaum found out recently that her son, who is 34 and has severe disabilities, will soon get a spot in a state program for people who need round-the-clock help with personal care and supervision.
It only took 20 years.
Krickbaum immediately cried when she got word two weeks ago that her son would soon get to enroll in the program, called a developmental disability waiver. She and her husband, David, are 61 and wondered how many more years they could care for their son, Erik, without more help.
“We’ve spent his entire life searching for options to help him, trying to provide the best life we can,” she said. “There will be a time when we can’t do this. The gratitude, you can’t even imagine. This means so much to me.”
The Krickbaums, who live in Arvada, are among those finally celebrating some good news in Colorado’s long struggle to clear the waiting list for programs for people with intellectual and developmental disabilities.
In 2014, the waitlist averaged 15 years. Then it dropped to eight. Now, thanks to a post-coronavirus budget forecast that was much more favorable than expected, hundreds of Coloradans with severe disabilities finally will get moved off the waitlist and into 24-hour services, either at home, in group homes or in residential facilities.
More than 2,000 others will continue to wait, but this year’s spending is a huge leap closer to fixing a problem that has plagued Colorado for decades.
The legislature’s Joint Budget Committee, which presents the budget to the rest of the general assembly, has tagged $15.5 million to move 667 people from the waitlist into services. That’s 667 people in addition to the typical number of people who become eligible for services, including those who get priority because of aging parents or who have turned 18 and are moving from round-the-clock child services to adult services.
Families and advocates were “blown away” by the move, said Ellen Jensby, senior director of public policy and operations for Alliance Colorado, which has been fighting for years to end the waitlist.
“This will make a pretty big dent,” she said.
Seven years ago, Colorado lawmakers decided 2020 was the deadline — by then, they directed, the waitlist would no longer exist. They ordered the state Department of Health Care Policy and Financing to come up with a plan to eliminate the long waits that led to parents flooding the Capitol each year begging for help.
But there was a major problem with that directive: No funding was attached.
Instead, each year, department officials presented their proposal and asked for the millions of dollars required to buy down the waitlist. And each year, they came up short.
In 2020, more than 4,000 people were still waiting. The average wait time had dropped to eight years from 15 years, but the goal set in 2014 clearly had not been achieved. The reason: it would cost an estimated $315 million to eliminate the waitlist for adult round-the-clock services by 2026, according to a presentation to lawmakers last year.
This year, though, Colorado ended up with a surprise tax-revenue windfall. The state’s economy performed dramatically better than what economists had predicted a year ago when the coronavirus pandemic began. Colorado has $3.8 billion more to spend in the next fiscal year than what was budgeted for this year.
Members of the state budget committee targeted $15.5 million of it to buy down the developmental disabilities waitlist. The move isn’t final until the budget receives full approval from the legislature, but there is overwhelming support among lawmakers.
“End the wait,” said Sen. Bob Rankin, a Republican from Carbondale. “It’s years overdue.”
The plan is solid enough that the Krickbaums already received a call from their Jefferson County provider to fill out the waiver paperwork for their son.
They adopted Erik from Korea when he was 4 months old, not realizing then that he had a condition that would change the course of the rest of their lives. Just before his first birthday, Erik began having seizures, hundreds of them in one week, Joni Krickbaum said.
He had started learning to walk, but then could no longer even sit up.
The Krickbaums enrolled Erik in a school for children with special needs and were able to get services through another state-federal waiver program while they waited the past two decades for a spot in the developmental disabilities program.
Now, Erik can walk and communicate, but can see only out of one eye at a time and still deals with seizures. His diagnosis has evolved over the years, but doctors say he has encephalopathy and suffered from oxygen deprivation in utero.
Erik was meant to join their family, said Joni Krickbaum, who is now on the board for the Developmental Disabilities Resource Center in Jefferson County.
“We’ve worked hard with having him be out in the community and be as normal as possible, just trying to make sure that he is given the chance for the best life that he could ever have,” she said. “That’s the reason we all came together this way.”
For now, Erik will continue living with his parents and receive expanded services at home and through community programs. But his enrollment in the waiver program will mean that when the Krickbaums grow too old to care for him, Erik will have access to residential care.
“As a parent of a child with special needs,” Joni Krickbaum said, “this touches me beyond belief.”
The adult, round-the-clock program, at $516 million per year, is the most expensive of all the Medicaid waiver programs, which are funded through federal and state dollars. 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 in 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.
The adult developmental disability waiver allows people to live in their homes with parents or other caregivers, or in a residential facility or group home. Services include help with bathing, eating, cooking, therapy, gaining employment and using transportation.
Most of the people on the waitlist for that program are on another Medicaid waiver, called the supportive-living services, which provides similar services but only a few hours per day rather than 24/7. The supportive-living program costs on average about $17,000 per person per year, compared with $79,000 for the adult developmental disability waiver. Once a person is enrolled, they can stay on the waiver for the rest of their life.
In 2014, there were five waiver programs in Colorado for people with intellectual disabilities with waiting lists. Now there is only one.
Also, the number of people receiving the adult, round-the-clock waiver has grown by 40% to 6,412 people, according to the latest count. The wait list still has 2,959, however. Other waiver programs have grown by 50%, said Bonnie Silva, director of the Office of Community Living at the Department of Health Care Policy and Financing, which includes the Medicaid program.
“This is more progress than I could have hoped for,” Silva said.
Besides the 667 additional spots in the adult program, Colorado is working on other ways to end the wait and improve services.
Department officials are in talks with Gov. Jared Polis’ office to remove spending caps on the supportive-living services program, which would allow people who need more help — but don’t need residential care — to get additional funding, Silva said.
They’re also working to make sure Coloradans across the whole state — not just metro areas — receive some of the 667 new spots. For this one-time allotment, spots will be distributed on a per-capita basis — not just by selecting the 667 people who have been waiting the longest. This means that every area of the state — which is organized into 20 community centered boards that manage the waiver services — will get to add at least three people to the program, Silva said.
And another bonus beyond the state spending: The federal American Rescue Plan includes one-time money for states to spend on services for the disabilities community. Colorado is awaiting federal guidance, but state officials are making plans to increase reimbursement rates to service providers who offer personal care, job skills and other services.
This would help cut down on what advocates and families call the “invisible waitlist” — the wait time for actually receiving in-home or community services once a person gets into the developmental disability waiver program.
All the changes have energized the community, said Jensby with Alliance Colorado. The days when people were so disenfranchised by the wait time that they didn’t even bother to put their name on the list are ending, she said.
“It’s going to be a big infusion of funding,” she said.