Posted by The Arc of North Carolina

It’s Developmental Disability Awareness Month and we want to highlight some success stories.

Here’s another success story from one of the people receiving services through The Arc of North Carolina! #DDAM2021

When Eliza was 3 years old, she was diagnosed with a benign brain tumor. After the tumor was removed, she began to have cognitive and physical challenges. There was a not a known cause for these issues and by age 4, Eliza began receiving therapies. Eliza’s mom, Kathryn, says that as a young mom, she was not sure how to characterize Eliza’s issues. Eliza was sensitive, she liked rigid routines, and she had anxiety. By the time Eliza was in the 4th grade, Kathryn felt like Eliza’s symptoms resembled those of autism. Eliza began having frequent, emotional outbursts.

Moving forward, Kathryn struggled to find resources. The family did not qualify for in-home assistance or Medicaid. She didn’t know what was available, had a hard time finding help, and started filling out several applications for programs.

One of those applications was for the North Carolina Innovations Waiver. This program allows people with intellectual/developmental disabilities (I/DD) to receive services in their home rather than an institutional setting. There are a limited number of slots available and the demand for a slot is high. Right now, the estimated wait time to receive a slot is 10-12 years. This was the one way a person could qualify for Medicaid without the family income requirement.

Eliza is now 19. During her final year of high school, a psychiatrist specializing in brain disorders did a final evaluation. He felt that her symptoms more closely resembled a traumatic brain injury (TBI). She has a lot of ideas, but has trouble going through the steps to make the idea happen. She likes to stay busy and is very social and active girl.

The process of trying to secure services for Eliza was intense and Kathryn says, “in all honesty, I was not aware that I had applied for an Innovations Waiver slot.” One of Eliza’s therapists happened to see her name on the Innovations Waiver list. The family has just been notified that they have received an Innovations Waiver slot. Kathryn says that “the professionalism and follow up for the waiver program is fantastic.”

Kathryn is incredibly excited about the benefits of the program and the services that will be provided. “I’m thrilled that Eliza can get additional support and needed resources. I can get some relief and my child can have a Community Navigator that will help Eliza explore volunteering and becoming a part of the community. I have the peace of mind that my daughter can do these things safely and become more independent.”
Kathryn makes sure to take the time to educate other parents about the NC Innovations Waiver. “I’ve been scrambling because there aren’t resources available; you keep hitting dead ends. It’s been so frustrating. Public schools still struggle to meet the educational needs of children with I/DD. So, I tell parents about the waiver, give them information and tell them to get their child on the wait list as soon as possible because the wait is long.”