Sometimes when mapping out things to do that could make the future better for the community, it can be helpful to pause and reflect on the path to today.
That was what happened a week ago for North Carolina public health officials and people living with disabilities took time to celebrate the 35th anniversary of the landmark Americans with Disabilities Act, or ADA.
The legislation, signed into law on the White House lawn by George H.W. Bush in the blazing summer sun on July 26, 1990, bans discrimination against tens of millions of people living with a disability in the U.S. by guaranteeing them “reasonable accommodation” in employment, education, transportation and other community settings.
Bush described the act as “the world’s first comprehensive declaration of e quality for people with disabilities.”
The 1999 U.S. Supreme Court Olmstead ruling further reaffirmed the right of people with disabilities, especially those with developmental disabilities and mental illness, to live in the community instead of being unjustly segregated in institutions.
Last week, Chris Egan, assistant secretary for employment and community access, transportation at the state Department of Health and Human Services, told NC Health News the law was a driver of a paradigm shift over the past three and a half decades.
“Disability is natural. It is not a character flaw. It isn’t someone’s fault,” Egan said. “The ADA, really for the first time, globally focused on the possibility of the American dream — meaning each unique individual’s opportunities and gifts and talents could be put that way. It’s about respect and really thinking about this as not how we define someone. A disability is a part of your life, but it isn’t how you’re defined.”
Personal impact
Gov. Josh Stein marked the historic day with a proclamation, saying the ADA “has expanded opportunities for Americans with disabilities by reducing barriers, changing perceptions, and increasing opportunities for full participation and inclusion in community life.”
Egan helped lead a discussion about the ADA at a conference room at the Hilton Raleigh North Hills last week. The legislation occurred, he told the audience and panel members who spoke at the event, through the tireless grassroots efforts of people with disabilities advocating for themselves, as well as their families, friends and allies looking to build a more inclusive and equitable society.
Kenneth Kelty, a motivational speaker at the Carolina Institute for Developmental Disabilities, a host of The Waiting Room podcast, a platform for telling the stories of people who live with disabilities and their caretakers, was among the speakers that day who shared their personal stories.
So was Lydia Williams, a hairstylist, singer, songwriter and musician who said she struggled with a learning disability and ADHD. Eventually she learned about the state DHHS’ Employment and Independence for People with Disabilities program and received training that helped her lean more toward her creative side and find meaningful work through that avenue. The singer-songwriter told the audience about how she gained confidence through that training, which has helped her in the workforce. That nurturing also gave her the courage to sing and play guitar at the anniversary celebration as she shared an original song she called “Abilities.”
“I am not what they planned,” she sang, “for I’d fallen short of the world’s views of who I really am. I didn’t plan the tragedies that led to my incapacity, but I know God still has great plans for me.”
Deb Goda, who directs the state’s Olmstead/Health Equity portfolio, found that moment to be one of the more moving at the celebration. “To just hear, ‘I was told that I was slow and just couldn’t keep up,’ and now she’s a hairstylist and a singer-songwriter, has done graphic design, and is so much more than anyone ever told her that she could be,” Goda said. “If there’s any takeaway we need to stop assuming we know how much somebody can achieve and stop telling them how they will never get somewhere and just give them as much encouragement as we would want and see how far we go.”
“And have high expectations,” Egan added. “If we have high expectations, people will achieve.”
Bumps in the road
Dev Sangvai, DHHS secretary since the start of the year, said of the anniversary: “People with disabilities bring so much value and talent to our communities. The ADA’s commitment to creating opportunity and increasing access remains critical to our goal of improving the well-being of all North Carolinians.”
While there is much to celebrate, there have been many bumps in the road. And there are obstacles still ahead.
Disability Rights of North Carolina took DHHS to court in 2017 in a lawsuit more widely known as the “Samantha R” case. It was named for Samantha Rhoney, whose family contended she was not getting the kinds of community services required under the Olmstead Plan.
The Supreme Court’s Olmstead decision found that uncalled-for segregation of people with disabilities without opportunities for work or play in their communities was unlawful discrimination. Since then, the state has developed some long-term plans to ensure that doesn’t happen.
Disability Rights of North Carolina settled the Samantha R. case in 2024 after nearly a decade of legal wrangling. As part of that settlement agreement, clear goals were established to move people out of institutional settings and into communities where they could get services closer to home.
Part of that plan included increasing the number of people who receive help through an Innovation Waiver, which covers a wide range of services available through Medicaid to people with disabilities.
But the General Assembly has chronically underfunded the program. As of Monday, there were 18,950 people on the waitlist for such services, according to a DHHS dashboard. Goda told NC Health News that some 40 percent of those people were getting some services as they waited.
Medicaid expansion bolstered ADA
Since North Carolina expanded Medicaid in late 2023, more than 670,000 people have benefited from the state and federally funded health insurance plan. But now that program is in jeopardy because of the recently passed federal One Big Beautiful Bill Act, which upends the funding model upon which state lawmakers based their approval of expansion.
Since North Carolina became one of the 40 states and Washington D.C. that now have expanded Medicaid , some people with disabilities have been able to access health services through the program that they could not use before because their income was considered too high.
“It’s meant so much for not only the 670,000 people on Medicaid expansion but their families,” Goda told NC Health News. “If you’re getting health care in a preventative manner, think about how much better an outcome that is for you as an individual and also just, frankly, for a cost standpoint for all of us and our communities.”
When people put off care because they don’t have health insurance, Goda added, their outcomes are likely to be worse than if they had taken preventative measures. “You have to be served in that hospital or that health care setting.”
Medicaid expansion has been a well-received program among many in rural North Carolina and elsewhere. State lawmakers have not revealed how they will fill the funding void created by the recent federal budget decisions.
Technology widens job access
Still, Goda and Egan spoke with optimism about moving forward while not giving short shrift to the challenges.
“If everyone going into the health care facility can pay their bills, they don’t have to charge more to cover the people that can’t,” Goda said. “There are jobs that are associated with it: People who are well can work and want to work and contribute. And it just makes a better community for all of us.”
Egan sees opportunity for more strides with technology and advances that can help people with hearing and sight impairments better communicate. He also sees possibilities for better access to transportation.
“Transportation is such a huge barrier when it comes to someone who doesn’t have access to a vehicle, or they may not be in an area that has really robust and efficient public transportation,” Egan said. “We’re seeing a lot of forward progress with that. We’re not there yet. But those are the kinds of things I’m really hopeful about as we look not that far down the road that could tackle major system issues.”
Egan also would like to see more employment opportunities for people with disabilities.
“That’s one of the things as we think about where we were 35 years ago and where we are today,” he said.
Egan also pointed out that under former Gov. Roy Cooper, North Carolina became an “employment first” state under an executive order signed in 2019. With that, the state made a commitment to becoming a model employer for people with disabilities.
But it’s a struggle to rethink how to do business under the policy.
“How do you even structure an interview in some cases? How does that person actually make it into the queue in order to make it to the next interview?” Egan asked. “We know that can happen, but if we look at the overall rates of … employment for people with disabilities, it’s still too low.”
Depending on the nature of the barrier, he said, 60 percent to 80 percent of people with disabilities are unemployed.
“We’re making progress, but we have a long way to go,” Egan said.
This article first appeared on North Carolina Health News and is republished here under a Creative Commons Attribution-NoDerivatives 4.0 International License.