Families have waited for 15+ years for a disabilities waiver, now they want lawmakers to help

capitol hearing
Posted at 6:18 PM, Jan 27, 2022
and last updated 2022-01-27 20:39:43-05

DENVER — Colorado lawmakers held a hearing Thursday to discuss the waitlist for people who need Intellectual and Developmental Disabilities waivers.

IDD waivers help provide behavioral health, dental, vision, vocational services and more. Those who qualify for it can receive funding, housing, transportation, mentorships and supported employment, among other things.

Their families can also be paid for helping with caregiving.

As of 2014, the average wait for individuals to receive one of those waivers was 15 years or more. Since then, however, the legislature has taken steps to try to alleviate that waitlist.

Last year, the state dedicated an additional $15.5 million to approve 667 more waivers.

“The waiting list time right now for those who don’t meet the emergency criteria is averaging just over six years, so a big difference in improvement in that time period from 20 to 25 plus years to just six years,” said Bonnie Silva, the director of the Office of Community Living under the Colorado Department of Health Care Policy & Financing, during Thursday’s hearing.

Joni Krickbaum’s son, Erik, was one of the 667 recently chosen to receive a waiver. The family had joined the waitlist when Erik turned 18 and graduated high school. He’s now 35 years old.

“It has been an uphill road from the day he was born. We've fought hard to find services for him,” said Krickbaum. “We were thrilled when he got the waiver. But it really has been a long journey.”

Krickbaum is now in the process of working through all of the paperwork and assessments associated with that waiver.

The family is thrilled with the opportunity, saying they weren’t sure this opportunity would ever come. Still, Krickbaum says it’s up to families to relentlessly advocate for their loved ones to ensure that they receive help.

“It's hard. As more people are diagnosed with disabilities, that waitlist continues to grow. There is no rulebook, so people are out there trying to navigate the system alone. It's very difficult,” Krickbaum said.

While her family was lucky, thousands of others are still on that waitlist and many others are waiting their turn to join the waitlist.

Maureen Welch is a mother of three whose youngest son has Down syndrome and autism, and is nonverbal. He was on a waitlist for two years before receiving a Children with Extensive Services waiver.

The waitlist for children has since been eliminated.

However, when Welch’s son turns 18, he will have to join the IDD waitlist and once again wait his turn for services.

“We have families that want to serve their loved ones and be paid through the developmental disability or the DD waiver, and we need that waitlist to be eliminated and the state of Colorado can do it,” Welch said. “When there's a political will, there's a way, but unfortunately, people with disabilities always go to the back of the line.”

She believes the list of people who would like state services is actually much longer that what the official data projects.

“Some people just don't bother to sign up, because they're like the waitlist is 15 years long. Why should I bother?” she said.

Now, Welch and others are calling for state lawmakers to finish what they started and end the waitlist.

Ending that waitlist will not be cheap, however. State estimates project that lawmakers will need to dedicate an additional $155 million from the general fund over the next six years. That money would be matched by federal funds to total $309 million.

Nevertheless, mothers like Welch and Krickbaum say you can’t put a price on their children’s needs, so they are hoping state will find the funding to eliminate the waitlist once and for all.