Rallying call for disability rights in NC draws national response

By Rose Hoban | North Carolina Health News

Published June 30, 2024 at 5:01 AM EDT

Just as in Marvel comics, when a superhero summons the team with the  “Avengers assemble!” rallying cry, one member of the national disability rights group ADAPT put out a call — and advocates from across the country responded with collective force. 

This past week, people with disabilities from Minnesota, Texas, Pennsylvania, Massachusetts, Kansas and other states loaded up their wheelchairs and assistive devices, recruited personal assistants and made their way to Raleigh to push for better housing and more services for people with disabilities in North Carolina.

“Our sister, one of our members, lives in North Carolina, and she called upon us to come to her state,” said Shona Akin, who traveled from Pennsylvania. “She sees way too many of her brothers and sisters in institutions.” 

The group made waves in Raleigh throughout the week — arriving at the headquarters of the state Department of Health and Human Services on Monday afternoon, the capitol complex on Tuesday and rolling down Jones Street before entering the General Assembly building on Wednesday to visit lawmakers. 

Their argument: North Carolina has dragged its feet on providing housing options for people with disabilities and holds a “bias” toward institutional placement. Those allegations come even after the state reached a settlement with the U.S. Justice Department in 2012 and another settlement with Disability Rights North Carolina this spring in lawsuits born of more than a decade of frustrations. 

There also is a lawsuit making its way through the courts over the large number of foster children living in psychiatric facilities. That could also have an impact on housing choices. 

Despite state officials saying they’re making extensive plans to move people into the community, people with disabilities say they’re tired of waiting for change. 

Too few services in NC

The woman who summoned national ADAPT members to congregate in North Carolina is Greensboro resident Nicky Boyte, who moved to the state from Texas two years ago. Boyte, who has cerebral palsy, said she did her research ahead of moving and thought North Carolina would be a good place for someone with a disability. 

“On paper it looks awesome. You’ve got an Olmstead plan, other states don’t have that,” she said. 

But when she got here, Boyte found things were tougher than she’d anticipated. She described feeling isolated, not seeing many people with disabilities moving about in the community. Her housing complex had poor accessibility for her wheelchair, and her shower stall was too small to accommodate her.

Eventually she met Madeline Jaekle, who invited her to live on her property in Greensboro. 

“I’m able to have her in a house that’s right behind me. It’s a private landlord, so they’re able to, you know, agree to have a ramp. It’s much higher accessibility,” Jaekle said. “There’s also bus stops and ways for her to get around town.”

Even though her living situation improved, Boyte remained frustrated at the limited services she was eligible for in North Carolina. Here, she was eligible for fewer weekly personal care hours than she received in Texas. 

“If you need more than 40 hours, that’s a joke,” Boyte said. “When I was in Austin, I had 68 hours a week. I need help transferring, bathing, showering, dressing. But once I’ve done all that, or had help, I’m a productive part of the society. Once I’m in my independent wheelchair, I’m on my own.”

She raised a 21-year-old son in Texas and has held down jobs, but has found all of these activities to be tougher to accomplish in North Carolina. 

That’s why she called on ADAPT, a grassroots organization that’s been around since the 1980s. Originally a group formed to press for more accessible public transit, ADAPT has evolved into a group pushing for more and better disabilities services around the country. Famously, ADAPT members crawled up the steps of the U.S. Capitol in 1990 to advocate for passage of the Americans with Disabilities Act, and many ADAPT members again showed up to the U.S. Senate in 2017 to protest plans to overturn the Affordable Care Act, which would have meant deep cuts to Medicaid.

Blockades and parades

On Monday, the ADAPT protesters showed up at the headquarters of the state Department of Health and Human Services on the campus of Dorothea Dix Park in Raleigh. There, Boyte said they demanded to speak to DHHS Sec. Kody Kinsley, who was unavailable.

The protesters would not be dissuaded. They blocked the doors of the building, and some protesters blocked the roads. One of the group was arrested. 

The NCDHHS issued a statement noting that Kinsley was out of the office. “NCDHHS welcomes the feedback of those that we serve and the right of peaceful assembly,” the statement read. “The Department offered to those in attendance the opportunity to sit down with senior executives, out of the heat, and discuss their concerns, but that offer was not responded to,” the statement continued. “NCDHHS is not aware of any requests from this group to meet or talk prior to Monday.”

On Tuesday, they circled the legislative complex, rolling through downtown streets with the police in tow, chanting: “Integrated housing. Affordable. Accessible.”

On Wednesday, about 60 people — about 40 in wheelchairs and another 15 or 20 assistants — rolled into the legislative building, where lawmakers were busy wrapping up this year’s work session. The crowd broke up into groups of three and four and, with lists in hand, set off to go door to door at legislators’ offices to advocate for more housing options. 

“We’re here to draw attention to the fact that people with disabilities can live in their homes and communities, and we don’t need to be segregated and siloed, and we don’t need to have services attached to the housing that we live in,” said Akin, the advocate from Pennsylvania. “We need to be able to be integrated in the community, so that people can make the choice as to what services they want.”

Matching services to needs

As someone with cerebral palsy who uses a wheelchair, Akin made the point that she has lived independently for 35 years and raised two children who are now young adults. She’s also been a homeowner for 19 years, paying a mortgage the whole time.

“I have the attendant care I need to function,” she said, noting that her state has supported her caregiver. 

“I’m able to keep a job and work a job and pay my own way. That’s the whole idea here. If the services match the functional needs of people, they’ll not only be more productive members of society, but they’ll become taxpayers in a much greater way.”

That’s a situation that remains out of reach for many people with disabilities in North Carolina, which has made only slow improvements to its stock of appropriate housing options. 

Over the past decade, North Carolina has gotten thousands of people out of facilities such as nursing homes, adult care homes and developmental centers, but thousands more remain in housing that continues to violate their civil rights, the advocates said.

“This is the 25th anniversary of the Olmstead decision,” said Robin Hoffpauir, who traveled from Pennsylvania. “It guaranteed the rights of people with disabilities, all disabilities … everybody, the right to live in the community of their choice and not be forced into nursing homes.”

State officials say they’ve been making plans, including an Olmstead plan, which lays out how North Carolina is to provide services for people with disabilities. In the past year, the state also received approval from the federal government to implement a change to the state’s Medicaid plan that will allow 3,800 people who have been waiting for a slot in the state’s Innovations Waiver plan to get more services as of July 1.

“These are home- and community-based services, so they’re waiver services, but you don’t need a waiver,” said Kelly Crosbie, head of the state’s Division of Mental Health, Developmental Disabilities and Substance Use Services. “These are home- and community-based services. These are community living supports. These are respite. This is competitive employment. These are waiver services to people not on the waiver.”

But there are more than 15,000 people on the Innovations Waiver waitlist. So even as 3,800 move off that list, there are still thousands of others waiting for services — and the legislature has funded only 350 additional slots over this current budget biennium. 

And with lawmakers wrapping up their work on this year’s budget, it’s clear that more won’t be added.

This article first appeared on North Carolina Health News.