By Emily Vespa
For more than four months, 32-year-old Jackson Hedgepeth has lived in a small room at Atrium Health Union hospital in Monroe, waiting for help.
Jackson has autism, and he’s nonverbal. He’s been on the waitlist for admission to J. Iverson Riddle, a state-operated center that provides services for people with intellectual or developmental disabilities (often referred to as I/DD) for more than a year.
His mom, Vickie Hedgepeth, said he has outbursts that he can’t control, and when that happens, he often hurts himself or those around him. In recent years, after he was abused by caretakers — one at a day program and another who worked with him at his house — those outbursts have escalated. Sometimes he bites himself or pulls Vickie’s hair.
Afterwards, he always uses sign language to say “I’m sorry.”
After an outburst in September, Vickie was desperate for help. She called NC START, a state crisis program for people with I/DD that has supported Jackson in the past. The next morning, members of the START team met the family at the Atrium Health emergency department.
Since then, Jackson hasn’t left. He’s been on a “social hold” since September 20, confined to a room with one window and a television to watch the Disney channel. He only interacts with people when they bring him food or medicine, Vickie said. Her visits with Jackson are limited to avoid triggering his aggressive behaviors.
In North Carolina, emergency departments have increasingly become the primary crisis option for people in need of mental or behavioral health care. Some wait days or weeks in the emergency department for a bed at one of the state’s psychiatric hospitals. Jackson spent three months in the emergency department before he was moved to a hospital bed upstairs in late December, Vickie said.
Vickie said she’s pleaded with state officials to admit him into Riddle, but they’ve told her there are no beds available. She’s looked out of state, but Jackson didn’t qualify for viable options.
A North Carolina Department of Health and Human Services spokesperson did not make staff available for an interview and said the agency couldn’t comment specifically on an individual due to privacy protections.
Read the entire response from the state Department of Health and Human Services here.
The stress of advocating for Jackson has taken a toll on Vickie’s health. In August, she was admitted to the hospital with stroke-like symptoms. In the end, it wasn’t a stroke, but it was a reminder that she’s aging, said Vickie, 58.
“Is this the hill I want to die on?” Vickie said, teary-eyed. “I love my child and I will sacrifice my life for him, but I almost would rather step out in front of a truck and save him than die at the hands of asking for help and not getting help.”
Waiting for space
For years, people in North Carolina with intellectual and developmental disabilities were housed in adult care homes and other institutional settings without opportunities for community-based care.
That “institutional bias” in how the state provided care became the subject of a U.S. Department of Justice investigation more than a decade ago. After an investigation, the justice officials found the state discriminated against people with disabilities by unnecessarily segregating them in residential facilities, something that violates the landmark 1999 Supreme Court Olmstead decision.
In 2012, North Carolina reached a settlement with the federal justice department, which required the state to expand its community services for people with these disabilities.
There remain three state-operated developmental centers in North Carolina that serve people with disabilities — like Jackson — who have complex behavioral or physical health needs that aren’t being met in community-based care. The state’s regional behavioral health management agencies, known as LME/MCOs, make referrals to the centers.
North Carolina has made efforts to transition people with intellectual and developmental disabilities from institutions into the community. The state developmental centers have hired specialists to help plan transitions to community-based care, North Carolina’s latest Olmstead plan says. The state has also bolstered its crisis teams that work to divert people from residential facilities.
To refer someone to a state developmental center, an LME/MCO has to demonstrate that “all other support options have been explored and are not available to meet the needs of the individual,” Kelly Haight, an NCDHHS spokesperson, said in an email.
Once someone is on the waitlist for a center, NCDHHS requires an LME/MCO to continue exploring alternative care options “to always encourage the utmost adherence to the Olmstead decision by encouraging the identification or development of supports in the community to prevent the need for institutionalization,” Haight said.
But there are still needs and circumstances that can keep people with disabilities in facilities and out of the community. Over 18,000 people across the state are on a waitlist for the NC Innovations Waiver, which funds community- and home-based services for people with I/DD through Medicaid, according to the latest data from September 2024.
The result? Beds in a developmental center for someone like Jackson can take a long time to open up.
North Carolina recently committed to addressing some gaps in care for people with these complex disabilities in another settlement, this time with Disability Rights North Carolina, an advocacy group that led the long-running court fight known as the Samantha R case. The new settlement, reached in April 2024, requires NCDHHS to regularly release progress reports, the first of which was filed this month.
The January report said that in the first quarter of the 2025 fiscal year, 12 people with intellectual or developmental disabilities transitioned from institutions to community-based settings. Eighty-nine more people are in the queue to transition. The top barriers to transitions, as reported by the LME/MCOs, were “lack of services,” “lack of accessible housing” and “guardian objections.”
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Corye Dunn, director of public policy at Disability Rights NC, said staffing shortages and a lack of imagination about what’s possible also act as barriers for supporting people with complex disabilities in the community.
“If people have only seen someone with a particular set of needs living in an institutional setting, it may be difficult for them to imagine what it would look like to support them appropriately in the community,” Dunn said. “That doesn’t mean it’s impossible; it means they haven’t seen it. Almost anyone can be supported in the community, but we have to commit to doing it.”
‘Untenable circumstances’
Vickie said in October 2023, when Jackson was referred to Riddle, she was told it would be roughly a six- to nine-month wait for placement.
Haight said admissions aren’t determined by time on the waitlist. Instead, people are admitted based on their level of clinical need, the “milieu and treatment needs of current residents for a particular unit,” and whether they can demonstrate that they’ve continued to explore community-based support.
While Jackson waits for an opening at a state facility, he and his family have been forced to live in “untenable circumstances,” said Melinda Plue, director of advocacy and chapter development at The Arc of North Carolina, which provides services and advocacy for people with disabilities. Jackson is safe at the hospital, she said, but that’s not where he should be.
“There is nobody, whether they have I/DD or not, who has a meaningful day when it’s in a locked emergency room with a window that has a security guard on the other side of it,” Plue said. “Somebody like Jackson might just be sitting in a bed watching television or staring at a wall all day long, which not only is not a meaningful day, but is likely to cause some regression when they leave.”
Vickie said she meets weekly with a team from Atrium, their local behavioral health management organization and people from the NC START crisis team, but there’s no end in sight. She said though it’s not ideal, Atrium has been wonderful in caring for Jackson in the interim. The family dog, a goldendoodle named Bella, misses sitting in the backyard with him, she said.
“Hope deferred makes the heart sick,” Hedgepeth said, quoting a Bible verse from Proverbs. “My heart is sick, and I don’t want my heart to be sick. I want my heart to be full of life and love, and sometimes love and a hug is not enough. We have given everything that we know to give, and it’s not enough.”
Plue said it feels incumbent on families to advocate for their loved ones with intellectual and developmental disabilities. That takes time and resources, and it’s exhausting, she said.
“There’s a lot of compassion by the state and by the hospital and by the community for the situation, but that probably should come with some action at this point,” Plue said.
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