UNMET FILM SHOWING

That story from John 5:1-9 has haunted me since March 9, 2023, when I joined an audience of several hundred people in the ACE Theater Complex at the North Carolina School of the Arts for the premiere of “Unmet: North Carolina’s Two Developmental Disability Crises,” a documentary focusing on families of adult children with intellectual or developmental disabilities.

The two crises include:

• That more than 15,000 disabled individuals are on a waiting list for a North Carolina Innovations Waiver that would fund in-home and community services, enabling them to avoid institutionalization.
• That low salary funding makes finding in-home caregivers difficult if not impossible.

Limited funding for the waiver program by the North Carolina Legislature has left some people on the waiting list for upward of 20 years. Further, disabled North Carolinians featured in the film have aged out of other publicly funded programs, and their families cannot afford extensive caregiver assistance.

Bill Leonard with with the film’s producer, photojournalist Robin Rayne.

While one of those individuals received the Innovations Waiver, his male caregiver, who affirms love and admiration for his client, acknowledges personal difficulties in making ends meet given the low hourly wages (set by the Legislature).

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Documentary depicts long waits, short staffs for those seeking disability waivers

A new film documents the long wait that thousands of North Carolinians with disabilities face as they seek a waiver to get services in their homes and communities instead of an institution. Even those who get them are finding it hard to find caretakers to provide the work.

There are more than 15,000 people on the waiting list for a North Carolina Innovations waiver, and the average time it takes to get one is almost 10 years.

The film UNMET: North Carolina’s Two Developmental Disability Crises explores what it’s like for people as they try to get a waiver and the recent workforce shortage that may delay their care.

Disability advocate Bill Donohue’s son Jeremy has Down syndrome. Waiver access is keeping Jeremy from marrying. After eight years on the list, he got a waiver and can get in-home care. His fiancée, waitlisted for more than 14 years, must live in a group home.  

Bill Donohue says many who finally get the waiver still have trouble finding the help they need because the pay is as little as $12 an hour. 

“Both of those issues are under the sole control of the legislature, who fund both salaries and services for people," says Donohue. "And so the film is about an awareness for everybody, but a specific message to the legislators of North Carolina that you need to act now.”

The 25-minute film follows two families with disabilities — a young man with autism and an adult with cerebral palsy.

Donahue says he hopes people will have several takeaways from the documentary.

“At one level, I want them to be outraged,” he says. “I want them to be aware. I want them to be curious. I want them to be motivated to share it with their churches and their Scout groups and their neighbors. I want them to be indignant about the legislature's inactivity. Mostly I want them to be effective citizens and address everybody in our community as full-fledged fully throated fully expressed people in our communities.”

He says people in populous areas like Forsyth County can face the longest backlog on the unmet needs list.

“It’s the urban areas who are most impacted because they tend to be a magnet for services,” he says. “We have 800 waiting in our county alone. And we hadn't gotten a waiver in five years. So those 800 became 820, 830. Every year, the neighboring counties may only have 30 or 40 on the waitlist.”

There is a free screening of the film on Thursday, March 9, at 7 p.m. on the campus of the University of North Carolina School of the Arts.