Colorado families push for state to protect access to autism services for children: "We feel powerless"

Concerns growing for families who rely on critical autism therapy for children

Colorado families who rely on a critical autism therapy for their children say concern is growing about access, as providers continue to close their doors and leave the state.

According to the Colorado Association for Behavior Analysis, 10 companies have closed, gone bankrupt or left the state in less than 2 years because they say the Medicaid reimbursement rates for services are not sustainable.

Parents like Christopher and Heidi Seth are now fighting to protect the centers that remain and are asking the state to adjust rates now rather than waiting until the next legislative session and putting access at risk.

"Malaki was born at 30 weeks prematurity weighing 2 pounds, 2 ounces," Heidi said.

CBS News Colorado's Karen Morfitt interviews Christopher and Heidi Seth. CBS

Years later, doctors would diagnose Malaki with autism disorder, and immediately the family started applied behavioral analysis, also known as ABA therapy. In a matter of months his development soared.

"He's more open to talking to people when he first meets them, he is more likely to go up to a random kid at the playground and play with them," Heidi said.

"It's been night and day," Christopher said.

In the last 2 years, centers across Colorado have been leaving in droves. The family's center, Hopebridge, closed their doors this month.

"It could take months for him to get comfortable with someone new," Christopher said.

The reason behind the closures is providers say Colorado's Medicaid reimbursement rates are not keeping up with inflation and other costs of business.

They began sounding the alarm just as the state's review committee was set to meet in July. Dr. J.J. Tomash, Director of BehaviorSpan in Aurora, told CBS then that Colorado is approaching a care crisis.

"If we have to wait another year there isn't going to be autism services in Denver anymore," he said.

The state's Joint Budget Committee will ultimately be tasked with approving an increase.

State Rep. Shannon Bird, who sits on that committee, says they are listening to families and providers.

"It matters that they've reached out to us to understand what's happening in real people's lives. And if we know that we're not doing what we need to do to get people the care they need it's a priority for us to fix this," Bird said.

The discussion by the review committee is to raise rates by roughly 20% to reach a 100% of the benchmark, which is an average of rates from 10 other states, adjusted for cost of living. If approved, it wouldn't take effect until next summer.

Bird says they do recognize there's an urgency here when it comes to keeping providers from leaving.

"I know we'll be discussing this and looking at all options, so I wouldn't foreclose the possibility of something else that we can do in tandem with the administration. I'm not sure exactly yet in advance of that meeting what our options are, but I wouldn't foreclose that possibility. We care deeply about this and want to find a solution," Bird said.

Christopher Seth holds his son Malaki. CBS

In the meantime, the Seth family, like hundreds of others in similar positions, will continue to support their child the best they can.

"We just feel absolutely powerless," Christopher said.

Marc Williams, a spokesperson for the Colorado Department of Health Care Policy & Financing, says their analysis showed Colorado at 93% of the benchmark and were looking at an increase around 7% versus the 20% discussed by the committee and that providers believe is more accurate.

While the committee will make a recommendation for 2024-2025 rates, the HCPF can make changes before going to the budget committee in November.

Ahead of that, the HCPF will have a hearing with the Joint Budget Committee on Sept. 20 to discuss the current budget at which time they can make "supplemental budget requests" -- Williams says he is not aware of plans to that at this time.

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