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'It's detrimental': Mother facing lack of care for daughter's disabilities

Laura Johansson and daughter Sydney
Posted at 6:57 PM, Aug 19, 2022
and last updated 2022-08-22 07:37:25-04

COLORADO SPRINGS — Laura Johansson said it has been 869 days since her daughter, Sydney Johansson, was able to receive care from a day program for adults with disabilities.

Sydney was born with Cytomegalovirus (CMV), leading to hearing loss and cerebral palsy. Her mother said she was placed in a day program after she graduated high school, but three weeks later, the pandemic hit sending everyone home.

"We figured, you know, by the next school year, we would get to start up again," Laura said. Now, over two years later, her daughter is still unable to get into a program that fits her needs.

Sydney Johansson
Sydney Johansson was born with CMV, a birth defect leading to her hearing loss and cerebral palsy.

Disability care facilities are facing staffing issues, leading to long wait lists of patients. Ivette Mengle, day program director for Our House, a disability care center, said their two waitlists have a total of 25 people. One of the waitlists is made up of around 10 patients previously at the center who were sent home due to the pandemic and who are wanting to enroll in the program again.

"Staffing is the biggest hurdle for waitlists. I'd bring them all in if I had all the staff," said Mengle. She said their staff increased during April, but is still dealing with the waitlists and communication issues with partnering agencies.

The Resource Exchange (TRE) is an agency that helps connect people with disabilities to care programs. Mengle said connecting on patient referrals with the agency has been rocky.

"They're completely backlogged. I have had meetings this week about other clients that we've had problems with their service plans, and it's a month waiting just to get the revision and get the ones that are in fixed," she said.

TRE confirmed the pandemic has taken a large hit on their services, but denied being backlogged with patients.

Another barrier is the amount of care Sydney and people like her need. She requires around-the-clock care and uses a feeding tube, which only a few centers in the area are trained to care for.

"All of our kids just want to be treated equally and fairly. It shouldn't be a battle every single time," Laura said. "I can't be the only one and she can't be the only one. Our family can't be the only ones, and if we are then that's a whole bigger issue."
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