Autism centers are leaving Colorado, landing kids on waitlists

BY JENNIFER BROWN THE COLORADO SUN

Colorado has lost at least nine agencies that provide therapy for children with autism in the past year and a half, leaving hundreds of families without care and lling up waitlists across the state.

erapy providers say the reimbursement rates they receive from the Colorado Medicaid program are too low to keep their doors open, especially after many state residents became eligible for the federal-state insurance program during the pandemic.

At the same time, Colorado is facing a health worker shortage and autism therapy agencies say they are struggling to pay workers enough to keep them. “ e impact has now reached a dire state,” said Ken Winn, president of Colorado Association for Behavioral Analysis, a nonpro t member organization. “Providers are leaving the state in droves.” e small business lost $700,000 in 2021 and $250,000 in 2022, said CEO and founder Brian Lopez, a neurodevelopmental psychologist. e center lost $5 per hour for every client on Medicaid, Lopez said. e state’s reimbursement rates have not kept up with the cost of operations, including salaries and its lease, he said. “As a small-business owner, with my lease up in June 2023, I could not foresee taking out another ve-to-sev- en-year lease and putting $2 million-$3 million in when I knew the numbers weren’t going to work,” Lopez said. ”It felt like it was too much of a personal jeopardy to do it.”

One of the latest to close Colorado operations is JumpStart Autism Center, which shut down in May. e center had more than 40 clients who attended its daylong behavioral health program in Englewood that focused on helping nonverbal children learn to communicate and control aggressive behaviors.

About 70% of JumpStart’s clients were on Medicaid, while 30% had private insurance that reimbursed more for services. ose percentages ipped during the pandemic, when tens of thousands more Coloradans became eligible for Medicaid during the public health emergency.

Lopze started JumpStart in New Mexico and opened a Colorado o ce in 2016. Medicaid reimbursement rates are high enough in New Mexico that the center is able to continue operations there, even with about 75% of its clients on the government insurance program, Lopez said.

New Mexico reimburses the center for training parents, while Colorado does not. Parent training is necessary, therapists said, so children who’ve learned how to communicate with their therapists can use the same methods at home. A child with autism who has a headache might repeatedly hit their head, for example. But with behavioral therapy, they might learn to point to a picture of someone in pain.

Colorado also limits therapists to about two hours to assess a child’s needs before setting up a behavioral therapy road map, though the industry standard is eight, therapists said. New Mexico’s Medicaid program allows eight hours, giving therapists time to gure out how to set up a comprehensive program. A child who is not using the toilet at age 7, for example, would see a urologist to make sure “we aren’t treating medical issues with behavioral interventions,” Lopez said.

A spate of recent closures also included Hopebridge, a national company that had several locations in Colorado, including in Denver, Fort Collins, Greeley and Colorado Springs. Another national company, Kadiant, left last year.

Colorado Medicaid used to fund services for children with autism through a “waiver” program, a comprehensive set of services for speci c groups of people who must qualify and often wait for a spot in the capped program. Colorado has various waiver programs for children and adults with intellectual and developmental disabilities, for example, including some with 24/7 in- home services. ose rates have not been updated since then, although the legislature has approved across-the-board rate increases for Medicaid providers, including 3% this year. e group also plans to recommend that the Medicaid division begin covering additional bene ts, such as parent training. e committee will submit its recommendations to the legislature’s Joint Budget Committee in the fall. Any approved changes would not take e ect until next July. e number of Colorado children receiving those bene ts climbed 200%, to 5,600 children last year from 2,437 children ve years ago. e annual cost per child rose to $3,400 from $1,900. And the total program cost is up 400%, now $126 million compared with $28 million ve years ago.

But the autism waiver program was capped at just 75 people.

In 2017, the federal government ordered Colorado to end the waiver program and instead add bene ts for children with autism to its Medicaid program. e state created a handful of billing codes that allowed providers to get reimbursed for pediatric behavioral health therapy for children with autism.

And the pediatric behavioral therapy rates are under review now.

A state group called the Medicaid Provider Rate Review Advisory Committee, which makes rate change recommendations to the legislature, decided in late July to recommend an increase that would bring Colorado rates in line with 10 comparison states.

A 2022 state law required the committee to review rate changes for each type of provider category every three years instead of the previous requirement of every ve years. e change was part of a greater e ort to adapt more quickly to in ation and workforce shortages, Medicaid o cials said.

In the past ve years, the number of children qualifying for Medicaid’s pediatric behavioral health bene t has jumped dramatically — and so has the cost.

According to the Medicaid division’s analysis, which con icts with autism therapy providers’ data, Colorado’s reimbursement rates are 93% of what other states are paying. Providers accused the department of cherry-picking states for comparison purposes that made Colorado look better.

Medicaid o cials said autism therapists, along with many other medical and mental health providers, are struggling now because of a huge swing in the wage market.

“Health care workers have really been through a tough time over the last several years and we’ve had individuals leave the workforce,” Kim Bimestefer, executive director of the Colorado Department of Health Care Policy and Financing, which includes the Medicaid division, told e Sun. “ e wage rates for health care workers have gone up in an unprecedented way and that’s sometimes putting pressure on organizations who are passionately trying to provide care to their customers, their patients.”

Bimestefer pointed toward $26 million in recent investments by the legislature and Gov. Jared Polis to bolster the health care workforce, including free college and retention programs for industries including nursing, EMTs, and dental and pharmacy technicians. Complaints that Medicaid provider rates are too low are a recurring dialogue in Colorado, extending across various rate categories from primary care to mental health. e Medicaid division also has faced harsh, public criticism in the past year over delays in approving prior authorization requests for children with disabilities.

Bimestefer said concerns about rates grow louder when the rate review committee is about to meet.

“You’ll see the voices of various stakeholders get louder because this is their time to voice their concerns and to in uence policy,” she said.

“ e department is listening. We’re listening to providers. We’re listening to families. We’re looking at other states.”

Autism therapy providers have seen their operational costs increase 42% since 2019, while rates have gone up just 7.4%, according to their analysis.

“ is has forced small, local business owners like myself to cut our own pay or skip our own payroll as well as cut much-needed expenses that impact the quality of services we deliver,” said Rebecca Urbano Powell, executive director of Seven Dimensions Behavioral Health in Evergreen. erapists met with Medicaid ofcials in December 2022 and again in February, seeking to stave o the closures. ey also met with the legislature’s Joint Budget Committee. “Because of how slow this process has been with (the Medicaid department), providers are going further into debt,” Powell said.

Winn, who is also founder of Advanced Behavioral Resources, said his nonpro t is concerned about how the therapy providers who stay open in Colorado will take on the estimated 1,000 children with autism whose autism centers have closed. e state is down to 136 providers billing Medicaid for pediatric behavioral therapy for kids with autism, a number that is dropping, according to the providers’ analysis.

“For years, this issue has been festering,” Winn said. “We have been having conversations with (the Medicaid department) and no one seems to be able to x the issue.

“ ey are hands down the most vulnerable Coloradans, who can’t speak for themselves. ey need a voice.” is story is from e Colorado Sun, a journalist-owned news outlet based in Denver and covering the state. For more, and to support e Colorado Sun, visit coloradosun.com. e Colorado Sun is a partner in the Colorado News Conservancy, owner of Colorado Community Media.