Op-Ed: Families are waiting 13 years for disability services. That’s unacceptable.

Imagine waiting over a decade for something as basic as the services that allow you—or your loved one—to live with dignity. It sounds unimaginable, yet this is the stark reality for more than 17,900 North Carolinians stuck on the Innovations Waiver waitlist. This state program provides life-changing support to individuals with intellectual and developmental disabilities (IDD). But for families waiting more than 13 years to access it, life can feel like a series of closed doors.

I’ve seen this firsthand. Over 50 years ago, my mother, Betty Moore, found herself in the same position as many parents today—fighting for her son, Jimmy, to have a meaningful life. At the time, there were no IDD services available in North Carolina. Parents like Betty and others had to create them from scratch. Their determination led to the founding of The Tammy Lynn Center, now known as TLC, which provides educational, residential, and family support services to individuals with IDD.

But despite decades of progress, the system remains broken. Families are still waiting—waiting for services, waiting for answers, waiting for hope.

At TLC, we see the toll this takes every day. Parents and caregivers come to us overwhelmed, exhausted, and out of options. They’ve spent years navigating a system that feels impossible to crack, only to learn that their loved ones might have to wait over a decade for help.

Imagine living with a severe or profound disability. The need for support is urgent, not something that can be postponed for 13 years. Disability doesn’t wait, nor should the services that make living with dignity possible.

What’s particularly frustrating is seeing our state legislature prioritize other funding initiatives while ignoring families in crisis. Twice now, the legislature has expanded funding for private school vouchers—money that could have entirely eliminated the Innovations Waiver waitlist. It’s hard to watch opportunities for meaningful change slip through our fingers, especially when we know the difference it could make for families across North Carolina.

But this story isn’t just about what isn’t working—it’s about what’s possible.

TLC has been fighting for families for more than five decades. My mother, once known in legislative halls as “that Moore woman,” fought tirelessly to make IDD services a reality for her son and so many others. Today, that fight continues.

In 2024, TLC secured funding for a new initiative to improve and expand access to IDD services. Despite the barriers, we’ve continued to grow, partnering with donors, community leaders, and dedicated staff to meet the needs of families. We’ve also taken steps to address staffing challenges, implementing career pathways and core values that have reduced our vacancy rate by 138%, and improved retention to pre-pandemic levels.

But we can’t do this alone.

Direct care workers, who are the heart of IDD services, remain underpaid and overworked. The median wage for these essential workers in North Carolina is just $13.62 an hour. Without them, there are no services. While the state allocated $176 million to address this wage gap, progress has been slow, and we continue to lose qualified staff to other industries. Families feel the impact of these shortages every day.

The legislature has the power to change this. In 2025, lawmakers can prioritize investments in the Innovations Waiver, direct care worker wages, and affordable, inclusive housing. North Carolina has the resources to fix this system. What’s missing is the will to act.

Families with loved ones who have intellectual and developmental disabilities deserve better. They deserve to know their children, siblings, and relatives can live meaningful lives—not in 13 years, but today. My mother believed that the chance to thrive, regardless of ability, is a basic human right.

At TLC, we’re still fighting for that right alongside and for families across our state. The question is: Will North Carolina’s leaders finally join us in this fight?