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Parent Caregivers, how organizations are helping children with special needs

Posted at 5:55 PM, Apr 18, 2022
and last updated 2022-04-18 21:19:15-04

COLORADO SPRINGS — Sheila Williams and her husband Jason have six kids, four of them are special needs children.

One of her oldest children, Jordan who is 21 years old has a couple of conditions that lead to more than a dozen other diagnoses. Among his diagnoses, he has a condition known as lissencephaly, which means his brain is smooth.

"When we had Jordan, life just changed, it meant that we had to seriously shift our focus," Williams said. She was serving in the Air Force and ultimately stepped away to care for him.

She learned early on, help was out there for her to be able to take care of her son and now, three other children she's adopted with special needs.

"Life is real (laughs), life is fun life is exciting, life is work, life is challenging," Williams said.

Colorado is one of about a dozen states that allow parents to work as caregivers for their children. Local organization Nursing Therapy Services of Colorado (NTSOC) helps families like Williams navigate the system of insurance and getting them to become Certified Nurse Aides (CNA).

"As a parent I was fragile with all the new responsibility of having a special needs child," Williams said.

For Jen Hanson, a case manager and care coordinator with NTSOC says navigating the system is something that completely changes the course for families.

"It's like winning the lottery," Hanson said, "it's life-changing."

Hanson works as a liaison for families navigating Medicaid waivers, for kids who wouldn't normally qualify to get long-term care.

"It's habilitative instead of rehabilitative," Hanson said.

Typically parents would have to find other care for their children, but as CNA's they can get paid to take care of their children in their home.

For Williams, it's something she says has given her purpose. She's not only worked to help her family but has found ways to pay it forward.

"I would meet other parents and I would share the other information and I was like wow I'm helping other families, and that's where I found purpose," Williams said, "I no longer grieved what I stepped away from, but wholeheartedly embraced being a parent, a mom, an advocate."

As she's found purpose in her life, her hope is that others will understand how special needs families navigate through life.

"Although our needs are different than the typical family, we're a family just the same," Williams said.


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