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This story was originally written by State Affairs, which publishes the NC Insider.
When Rep. Zach Hawkins first ran for office in 2018, his two sons were diagnosed with autism.
He now co-chairs the General Assembly’s Intellectual and Developmental Disabilities (IDD) Caucus, which is welcoming new members and gearing up for the 2025 long session.
“It gave me a purpose that I didn’t know I needed,” said Hawkins, a fourth-term Democrat from Durham. “I didn’t know that I was going to have this as a platform, as one of the No. 1 things I focus on.”
Early in Hawkins’ tenure as a legislator, the General Assembly passed an expansion bill that gave families outside the Mecklenburg and Raleigh-Durham hubs access to critical IDD resources and services.
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“That crowning achievement was the moment I was like, ‘We have to get this caucus back going again and I’m going to lead it as long as I’m here,’” Hawkins said. “When you are at the Legislature, you have this deep feeling that you are speaking for so many other families who don’t even have the time, resources or know-how to advocate [for those with intellectual disabilities].”
The IDD Caucus hasn’t met yet this year but has already received support from legislators with personal ties to the IDD community. Potential legislative efforts of the caucus could include a push for higher pay for direct care workers, more in-home services for people with IDD and looking at special needs teacher retention.
More than 230,000 people across the state —including children over age 3 and adults — have an intellectual or developmental disability, according to estimates.
Hawkins said the caucus will work on an IDD omnibus bill that captures the goals of various partner organizations and will serve as a road map for legislators.
Every caucus in the Legislature has to reconstitute every biennium. This session, Hawkins; Sen. Michael Lee, R-Wilmington; Sen. Sydney Batch, D-Wake; and Rep. Mitchell Setzer, R-Catawba, co-chair the IDD Caucus.
“I think because the caucus gets together in an informal setting to hear from folks, it is necessarily a little more conducive to a conversation,” Lee said. “It paves the way for a discussion for people who want to learn more.”
There’s plenty of ground to cover: workforce development, the North Carolina Department of Health and Human Services, vocational rehab and the intricacies of where state and federal funding is necessary.
“They should all kind of dovetail together, but they don’t,” Lee said. “That’s where the caucus is a good concept to talk about a lot of these issues.”
Higher pay for professional services
The IDD Caucus plans to tackle numerous legislative priorities this year.
Hawkins said there is a revolving door of direct support professionals working with the IDD community. These employees often make just $8 or $9 an hour and could make more at other jobs requiring a lot less work.
The 2023 budget authorized NC Innovation Waivers for only 250 people with IDD. The waivers are part of the federally funded Medicaid program that provides long-term care and services for individuals in their homes rather than institutions.
Thousands of people have received waivers in the past. But there is a waiting list of 15,000 people, which was the reason for the lower number of approved waivers, Hawkins said.
If pay for professionals who work with people with IDD were increased, it is hoped the number of those on the waiting list would decrease and as many as 750 Innovation Waivers could be added this session, Hawkins said.
“The top priorities are making sure that we receive the resources for direct support professionals and that we increase the innovation waivers,” Hawkins said at a news conference last May in support of House Bill 1003, which did not pass beyond its first reading. He said those legislative wishes will continue into the 2025 session.
Educational achievements
A major success story from the General Assembly and IDD Caucus has been the Access to Achievement pilot program started in 2021 at Brunswick and Catawba Valley community colleges to serve students with intellectual disabilities. The program served 157 students when it was launched; 55 received job offers after completing training.
Since the program’s inception, 13 additional community colleges have joined the effort to maximize access to degrees, credentials and employment opportunities for students with IDD. The General Assembly has allocated nearly $4 million for the expansion.
“Successful programs like this don’t just exist anywhere else in the country,” Lee said. “You really need a coalition of the willing to make something successful. This is not something that you can just set up [and have it be] another programmatic piece of the puzzle.”
Lee’s involvement with the IDD community began 18 years ago with his son’s birth. He said he’s seen what is and isn’t available for families and children across the special needs and IDD community. He also has witnessed some of the failures to meet the needs of what he considers “the most underserved population that is out there.”
A key ingredient of Access to Achievement is creating a school community with same-aged peers, Lee said.
Before the advent of the program, IDD students, who are typically family-dependent, would often “fall off the map” when they aged out of available resources. Financial benefits can provide a safety net, but the sense of purpose from contributing to one’s community — such as through employment — was missing, Lee said. That lack of purpose contributed to mental health issues down the road.
“That would happen to typically developing people who graduate from school and have nowhere to go to work,” Lee said, adding that excluding people with IDD from the workforce is a missed opportunity.
Approximately 1 in 9 working-age adults in North Carolina have a disability.
“If you talk to employers, [people with IDD are] the most dedicated,” Lee said. “They’re not just on time; they’re early. They work very hard and care deeply about the work they’re doing. They’re happy to be working.”
North Carolina is an innovator in funding and supporting a program such as Access to Achievement. Lee said finding a solution isn’t easy when a template from another state isn’t available.
“There’s a lot more that will come from it, not just an expansion of the existing program, but I think there’s a lot more we can do in the future,” Lee said. “We can solve a lot of workforce issues by bringing more people into the workforce that have been overlooked.”
Lisa Estep, chair of the State Board of Community Colleges Finance Committee, was critical to getting the program started alongside Lee. Their efforts earned praise from Tom Looney, chairman of the state board of the North Carolina Community College System, at a meeting in January.
“What we would like to do is continue to grow it to any college that would like to be a part of the program,” Looney said. “We have students out there graduating from high schools with uncertain economic opportunities and we’re trying to provide opportunities, which is what community college is all about. Not only are they getting skills, but there’s a job at the end of it.”
Classroom challenges
North Carolina suspends more students with disabilities than any other state, often because of misunderstood behaviors and vacant positions for teachers with expertise in educating students with IDD.
According to WCNC-TV, more than 2,600 students with disabilities received out-of-school suspensions or expulsions lasting more than 10 days that school year, while nearly 19,000 received 10 days or fewer.
“That is something we have to tackle,” Hawkins said. “We have a teacher vacancy across the state that is growing in the special needs space. You can’t have a substitute — that needs to be someone that is highly trained, so we need to do a better job of recruitment.”
About 1,200 special education teacher positions were vacant in the fall of 2023 and others were filled by unqualified staff, according to the North Carolina Department of Public Instruction.
Beyond the Access to Achievement success, Hawkins also highlighted his work with Rep. Dean Arp, R-Union, and former Rep. Jeffrey Elmore. Together, they secured $3 million in funding for NC State and NC Central University in a workforce development plan for the IDD community.
“Everybody in North Carolina should be able to maximize their given potential,” Hawkins said, adding that IDD Caucus legislators are keeping an eye on many areas.
New advocate for IDD community
Even before he began considering a career as a lawmaker, freshman legislator Rep. Jonathan Almond, R-Cabarrus, already had a source of guidance for his role in office.
Almond’s twin boys, who recently turned 7, are mostly nonverbal. He said it’s been a yearslong journey of understanding how to “unlock that door” and tackle the challenges that follow. During the COVID-19 pandemic, uncertainty surrounding the masking policy and how it would affect his children’s development kick-started Almond’s interest in politics.
“I think that’s one of the biggest reasons that God asked me to run for office — my personal experience with the special needs community,” he said. “I hope to be an advocate like Rep. Hawkins and just try to bring more awareness and support to that community while I’m in Raleigh.”
Almond said he is working with Rep. Paul Scott, R-Cleveland, to reformulate the funding calculation for Exceptional Children’s curriculum. He’s also hopeful he can start to look at what is causing higher rates of childhood diseases and disorders, including autism, and how the Legislature can help families dealing with this reality.
‘Huge wins’
There will be a day in March when members of the IDD community can visit the General Assembly and speak with lawmakers.
“We’ve had huge wins over the last two sessions just because we were an organized caucus,” Hawkins said.
That optimism is spilling over into 2025. He’s encouraged by the presence of two freshman legislators — Reps. Almond and Bryan Cohn, D-Granville — who will bring their personal experience to the IDD Caucus.
“We’re really excited about what the future holds,” Hawkins said. “I didn’t even know we would be bringing in members that had personal experience [to share]. That just lets me know we’re going to be even more powerful going forward.”
