Opinion: My NC son has cerebral palsy. He’s waited 15 years for care from an underfunded Medicaid program.

Today, nearly 19,000 North Carolinians are on the waitlist for the Innovations Waiver, a Medicaid program in NC that helps fund care for people with intellectual and developmental disabilities. The average wait time is 12 to 15 years.

Imagine being put on hold—not for 15 minutes, but for 15 years. That’s how long my son has been on North Carolina’s Registry of Unmet Needs, also called the Innovations Waiver waitlist.

The Innovations Waiver is a Medicaid program designed to provide critical services for people with intellectual and developmental disabilities (I/DD), allowing them to live and participate in their communities instead of being placed in institutional settings. These services include personal care, job coaching, transportation, and respite care for families.

All the North Carolina news, in one award-winning, free newsletter. Sign up for Cardinal & Pine’s daily email here. 

Yet, despite its purpose, the program remains inaccessible to thousands due to an underfunded and overburdened system.

My son, Matt, was born ten weeks premature. Before he turned two, doctors diagnosed him with spastic quadriplegia cerebral palsy, warning that he might never walk and could face cognitive challenges. That moment set me on a lifelong journey of education and advocacy—one that continues today at 74 years old.

I’m far from finished. There is still so much work to do to ensure that individuals like my son receive the support they need to reach their full potential and lead meaningful lives.

Today, nearly 19,000 North Carolinians remain on the waitlist, waiting for services through the Innovations Waiver. And the list keeps growing because the average wait time is 12 to 15 years.

Matt’s work as a self-advocate began early. By the time he graduated high school, he had already spoken in Washington, D.C., addressing hundreds about the barriers faced by people with disabilities. Over the years, he has spoken to groups across North Carolina, as well as in California and Chicago. Now 38, his advocacy is more critical than ever. With Medicaid funding in jeopardy and service waitlists expanding, I know that more voices—louder voices—are needed to push for solutions.

A life is a terrible thing to waste. Every day, I see lives being wasted—not for lack of ambition or ability, but because the support they need simply isn’t there.

I have spent years worrying, just like so many other parents and caregivers. When Matt was younger, I wondered if he would fall so far behind in missed opportunities that he might never catch up. Would he ever reach his potential? Now, as an aging parent of a 38-year-old son, I ask myself if his worth will ever be fully recognized. Will he ever have the chance to live as independently as possible? And even if a waiver slot becomes available, will there be workers to provide the essential care he needs? A severe workforce shortage, driven by low wages and a lack of benefits, means that even those who qualify for services may not have access to the support they require to get out of bed, use the bathroom, get dressed, eat, and go to work.

Eight years ago, Matt briefly gained a taste of independence through a transportation initiative run by his managed care organization. A wheelchair-accessible cab picked him up and took him to the library.

I stood in the driveway and cried. At 31, for the first time in his life, he was able to access the community without me behind the wheel. But the funding lasted only a month. I’m back to driving him—while I still can.

A life is a terrible thing to waste. Every day, I see lives being wasted—not for lack of ambition or ability, but because the support they need simply isn’t there. Families like mine face enormous uncertainty as we try to provide care without the resources we desperately need.

On March 26, nearly 300 advocates gathered at the North Carolina General Assembly to share their stories and help lawmakers better understand the challenges faced by those with I/DD.

These conversations are an important step toward finding solutions that ensure individuals on the waitlist can access the care and services they need. Addressing the workforce shortage and expanding funding for the Innovations Waiver will help more people lead independent, fulfilling lives. I hope we can work together to create a system that supports individuals with I/DD and their families—so that others will not have to wait 15 years for the opportunity to fully participate in their community.