Opinion: Thousands painstakingly wait for disability services in NC. Will this be the year they’re seen?

Governor Josh Stein recently released his proposed state budget, and for thousands of North Carolina families caring for a loved one with an intellectual or developmental disability (IDD), it represents a step forward. His proposal balances fiscal responsibility and meaningful investment in vulnerable communities, all without raising taxes. 

The budget includes more than $37 million to expand access to the Innovations Waiver, a Medicaid program that helps people with an IDD live at home or in community settings with the services they need to thrive. That funding translates to roughly 200 new waiver slots—a step in the right direction, especially in a tight budget year. 

Governor Stein is in a tough position, working within the limitations created by North Carolina’s ongoing corporate tax cuts and the rapid expansion of taxpayer-funded private school vouchers, which divert critical resources away from public systems and services that benefit many in favor of those that serve only a few. 

But the reality is this: nearly 19,000 North Carolinians remain on the waiting list, many for years. To make a meaningful impact, we need to fund at least 1,000 new waiver slots this year. 

This proposal builds on recent progress. Over the past four years, the General Assembly has made historic investments in IDD services—funding 1,350 new waiver slots and committing $60 million in recurring funds to increase Medicaid reimbursement rates and boost wages for Direct Support Professionals (DSPs). I’ve been proud to champion those investments alongside my colleagues. 

Still, significant gaps remain—especially in the DSP workforce. These professionals are the system’s backbone, helping individuals with disabilities live safely and independently. But many workers earn just $12 to $14 an hour—not even a living wage. To truly stabilize this workforce, we need at least $30 million more in recurring funding to raise wages to $18 an hour. 

That’s why investments in workforce development are so critical. The budget includes important support for education and workforce programs, and we need more when it comes to direct support for DSPs—especially compared to recent years. 

At TLC, a nonprofit in Raleigh that provides residential and therapeutic services for children and adults with disabilities, we launched a Career Pathways program to help recruit and train new Direct Support Professionals. Participants completed their coursework in December and graduated this March. It’s one example of what’s possible, but broader solutions are urgently needed. 

We’ve also seen the impact of combining state support with local leadership. In February, TLC opened the Austin Collard Residence and Community Center—our first major expansion in 30 years. This new residence provides permanent, supportive housing for adults with intellectual or developmental disabilities, built with independence and dignity in mind. Similar housing is needed across the state. 

By 2040, North Carolina’s disabled population is expected to grow by nearly 40%, while many family caregivers are aging out of their roles. Without a long-term plan, we risk leaving thousands without the care they deserve. 

We’ve already seen the heartbreaking reality of what happens when no plan exists. Joey, a young man with IDD, lost his primary caregiver—his mother—in a tragic car accident. In an extraordinary act of compassion, his Direct Support Professional stepped in, took him into her home, and became his legal guardian. But stories like Joey’s are becoming more common, as families increasingly ask: “What will happen to my child when I’m gone?” 

This is exactly why places like TLC exist—to provide families with peace of mind, knowing their loved ones will continue to receive lifelong, high-quality care in a supportive, dignified environment. Without a long-term plan, we risk leaving thousands without the care they deserve. To truly meet this growing need, our state must prioritize sustained investments in waiver expansion, workforce development, and supportive infrastructure tailored specifically for individuals with disabilitiesIDDs. 

Ensuring their access to quality care and independence will require ongoing collaboration and commitment from policymakers, local leaders, service providers, and community members alike. Together, we can build a North Carolina where individuals with disabilities are fully supported, visible, and valued.