Rose Hoban
Just like in Marvel comics when superheroes assemble their team by shouting, “Avengers assemble!”, a member of the national disability rights organization ADAPT made the call and supporters across the country rallied to respond.
Last week, people with disabilities from Minnesota, Texas, Pennsylvania, Massachusetts, Kansas and other states loaded up their wheelchairs and assistive devices, hired aides and traveled to Raleigh to advocate for better housing and services for people with disabilities in North Carolina.
“The sister of one of our members lives in North Carolina and asked us to come to her state,” said Shauna Akin, who came from Pennsylvania. “She sees so many of her brothers and sisters in facilities.”
The group made waves in Raleigh throughout the week, arriving at state Department of Health and Human Services headquarters Monday afternoon, the State Capitol on Tuesday and making its way down Jones Street into the State House building on Wednesday to visit with lawmakers.
They say North Carolina is unwilling to provide housing for people with disabilities and that there is a “disproportionate” focus on institutional placements — lawsuits born out of more than a decade of frustration that continue even after the state settled with the U.S. Department of Justice in 2012 and with Disability Rights North Carolina this spring.
There is also a lawsuit pending in court over the high number of foster children living in psychiatric institutions, which could also impact housing choices.
State officials say they have big plans to relocate people with disabilities into communities, but people with disabilities say they are tired of waiting for change.
Robin Hoffpauer came from Texas to help North Carolina residents with disabilities who need extra help. Her hat reads, “I want to stay in my own home, not a nursing home.” Photo by Rose Hoban
ADAPT activists walked and wheelchaired through the neighborhoods surrounding the Capitol on Tuesday. Photo by Rose Hoban
Rick Macias, Kansas Photo by Rose Hoban
Most disability activists had this sticker on their clothing. Photo by Rose Hoban
Chris Botero came from Austin, Texas, to support friends in North Carolina who are advocating for more funding for services and personal care professionals. “Caregivers need to be paid a lot more because right now they’re making $10.60 an hour, and that’s just not acceptable,” Botero said. “If I was a caregiver today and I had a disabled person that I was caring for, would I be able to survive on that?” Photo by Rose Hoban
Danny Saenz (center, wearing a tie-dye shirt) meets with a legislative aide for Rep. Frank Eyler (R-Shallotte). Saenz was one of the activists who walked up the steps of the U.S. Capitol in 1990 to lobby for the passage of the Americans with Disabilities Act. He came from Texas to the North Carolina Legislature to advocate for better services for people with disabilities in the state. When asked why he came to North Carolina, he said, “I know the situation. We’re in a different state, but we have the same problems.” “We can’t find housing that’s accessible, affordable, and integrated. We can’t find enough aides because we’re not being paid enough. Durable medical equipment always takes a long time to repair, to order, to fix, to get approved.” Photo by Rose Hoban
Activists from the disability rights group ADAPT met inside the Capitol in Raleigh to strategize which lawmakers to visit.
Nikki Voight, a Greensboro resident, called on her colleagues from ADAPT, a national disability rights group, to come to Raleigh to advocate for more funding and services. Photo by Rose Hoban North Carolina has too few services
The woman who brought ADAPT’s national members together in North Carolina is Nikki Voight, a Greensboro resident who moved to the state from Texas two years ago. Voight, who has cerebral palsy, said she did some research before moving and thought North Carolina would be a good place for people with disabilities.
“It looks great on paper. You have the Olmsted Plan, other states don’t have it,” she said.
But after arriving, Voight found it harder than she expected. She said she felt isolated by the lack of people with disabilities in the area. Her housing development is not wheelchair accessible, and the showers are too small for her to fit in.
Eventually she met Madeline Jaeckle, who invited her to live on her property in Greensboro.
“We’re able to have our daughter live in a house right behind ours, and because the landlord is a private citizen, they’ve agreed to put in a ramp, so it’s a lot more accessible,” Jakle says. “There’s a bus stop and other ways for her to get around town.”
Though his living situation improved, Voight remained frustrated by the limited services available to him in North Carolina, where he received fewer hours of personal care per week than he received in Texas.
“I’m kidding myself about needing more than 40 hours,” Voight said, “When I was in Austin, I only had 68 hours a week. I needed assistance to move around, bathe, shower, get dressed. But once I get all that done, or have assistance, I’m a productive member of society. Once I get into an independent wheelchair, I can do the rest on my own.”
She has been raising her 21-year-old son in Texas and continuing to work, but has found it more difficult to accomplish all those activities in North Carolina.
So she turned to ADAPT, a grassroots organization that has been active since the 1980s. Originally formed to advocate for improved public transportation, ADAPT has evolved into a group that advocates for more and improved services for people with disabilities across the country. ADAPT members famously walked the steps of the U.S. Congress in 1990 to lobby for the passage of the Americans with Disabilities Act, and many of their members are Also In 2017, he appeared before the U.S. Senate to protest plans to repeal Obamacare, which would have meant major cuts to Medicaid.
ADAPT members have a long history of activism, including crawling up the steps of the U.S. Capitol to lobby for the passage of the Americans with Disabilities Act in 1990. Credit: Netflix/ YouTube Blockades and parades
On Monday, ADAPT protesters showed up at the state Department of Health and Human Services headquarters on the Dorothea Dix Park campus in Raleigh, where Voight said they demanded to speak with Health and Human Services Secretary Cody Kinsley, who was unavailable.
The protesters were not deterred. They blocked the doors of the building and some protesters blocked the road. One member of the group was arrested.
NCDHHS released a statement saying Kinsley was no longer in office. “NCDHHS welcomes feedback from the people we serve and their right to peaceful assembly,” the statement said. “The Department offered attendees the opportunity to sit down with senior leadership away from the heat and discuss their concerns, but this offer was not accepted,” the statement continued. “NCDHHS is not aware of any requests from this group to meet or speak prior to Monday.”
On Tuesday, they surrounded the Legislative Building complex and drove through downtown streets with police in tow, chanting, “Integrated housing. Affordable. Accessible.”
About 60 people — about 40 in wheelchairs and 15 to 20 with caregivers — packed into the Capitol on Wednesday as lawmakers were busy wrapping up this year’s work session. They split into groups of three or four and began going door-to-door to lawmakers’ offices with lists in hand, pleading for more housing options.
“We’re here to draw attention to the fact that people with disabilities can live in their own homes and communities, that they don’t need to be segregated or isolated, and that services don’t need to be attached to the housing we live in,” said Akin, the Pennsylvania activist. “We should be able to be integrated into the community and allow people to choose the services they want.”
Credit: Rose Hoban Matching services to needs
Akin, who has cerebral palsy and uses a wheelchair, stressed that she has lived independently for 35 years and is now raising two children, and has been a homeowner for 19 years, paying off her mortgage every year.
“I’m getting the care I need to get by,” she said, noting that the state provides support for caregivers.
“I can keep my job, I can work and I can pay my own bills. That’s the whole idea here. If services meet people’s functional needs, not only will they be more productive members of society, but they’ll also be taxpayers to a much larger extent.”
This remains out of reach for many people with disabilities in North Carolina, where the stock of suitable housing options has only slowly improved.
Over the past decade, North Carolina has removed thousands of people from nursing homes, adult care homes, developmental centers and other institutions, but thousands more remain in housing where their civil rights continue to be violated, advocacy groups said.
“This year marks the 25th anniversary of the Olmstead decision,” said Robin Hoffpauer from Pennsylvania, “which guaranteed the rights of people with disabilities, any disability, everyone, to live in the community of their choice and not be forced into a nursing home.”
State officials say they are developing a plan that will include the Olmsted Plan, which outlines how North Carolina will provide services to people with disabilities. The state also received federal approval last year to make changes to the state’s Medicaid plan that will allow 3,800 people who were waiting for slots in the state’s Innovation Waiver to get more services starting July 1.
“These are waiver services because they are home- and community-based services, but a waiver is not required,” said Kelly Crosby, director of the state’s Department of Mental Health, Developmental Disabilities and Substance Use Services. “These are home- and community-based services. These are assisted community living. These are respite care. This is competitive employment. These are waiver services for people who don’t have a waiver.”
But there are more than 15,000 people on the innovation waiver waiting list. Even if those 3,800 people are removed from the list, thousands more would still be waiting for services. And Congress has funded just 350 additional slots in the current biennium budget.
And now that lawmakers are done drafting this year’s budget, it’s clear no more money will be added.
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