Lack Of Resources To Address Severe Behaviors Leaves Families With Few Options
RALEIGH, N.C. — It had been less than five days since Greg Cockrell dropped off his son, Sam, who has autism, at a treatment center when staff informed him the 19-year-old was in jail.
“Didn’t anyone tell you about the incident?” a staff member asked.
The Ranch, a private mental health treatment center hundreds of miles away in Tennessee, was not the family’s first choice for their son’s psychiatric treatment.
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They had tried to get him admitted at North Carolina’s foremost hospitals, but his aggression was “too severe to be safely managed,” according to documents from UNC’s flagship hospital, reviewed by The News & Observer.
The three state-run facilities that specialize in treating people with complex developmental disabilities, like Sam, had waitlists that stretched on for months or years.
A private facility in Asheville agreed to help Sam — but they did not take the family’s insurance and needed a $37,500 deposit to begin treatment.
The Cockrells, like many families affected by autism in the state, came to a realization: “There is nowhere in North Carolina to get help.”
Their only option, they decided, was to go out of state.
After a three-hour intake process at the Ranch in late November — during which staff noted in Sam’s records that he would “break things and will become violent when he gets mad” — they reassured the Cockrells they could help their son.
A few days later, they called the police after Sam became violent with another man in the program and broke items in the cabin. A sergeant from the county sheriff’s office took him to Hickman County jail in handcuffs, according to court records.
“Our hearts immediately dropped,” Cockrell said. “He’s 19 years old physically but mentally, he’s about 7 or 8. The thing that they said they could help us with was the thing that they kicked him out for.”
By the time Cockrell arrived in Tennessee to bail him out, Sam had been in a cell and unmedicated for more than 17 hours.
In North Carolina, there is already a shortage of resources for people who need urgent mental health treatment. For people with autism, who often require more specialized care, access to treatment in a crisis is even scarcer.
Left with few options, Cockrell said he and other families are often forced to go outside North Carolina’s system to find help, which may mean putting their trust in facilities hundreds of miles away or risking their own safety to handle crises at home.
The Cockrells blame the Ranch for allowing their son to go jail. But they also don’t believe he should have been in Tennessee for treatment in the first place.
“Our story does include the Ranch, but I think if you look at the big picture, it’s mostly about North Carolina and how the mental health system has just failed us repeatedly,” Cockrell said.
The Ranch did not return requests for comment.
‘There’s nowhere to take him‘
When Tiffanie Brinson sees her 16-year-old son with autism twitching his leg, she knows there’s only a matter of minutes before he slips into an outburst of violence.
“Hey Google, ‘Stay,'” she tells her smart speaker, which broadcasts the codeword around the house, directing her daughter to stay in her room and lock the door.
She administers a dose of antipsychotic medication to her son, who also has bipolar disorder.
Brinson and her husband, Robert, rush to get him upstairs to his bedroom, which has been cleared of hard, throwable objects and outfitted with calming activities like soft-cover books, a plastic drum and a weighted blanket.
They watch from a camera mounted on his ceiling as the medications slowly take effect.
Tiffanie and Robert are often able to get him upstairs before anyone is hurt — but not always. In early January, Brinson was hit so hard in the face that it left bruises along her jaw.
Her 19-year-old daughter begged her parents to take him to the hospital.
Brinson also once thought a hospital would be the answer to her son’s periodic psychiatric crises (Brinson asked that her son’s name not be used in this story). Surely, she thought, if she could get him to the professionals, they would adjust his medications and bring him under control.
She said she can request an outpatient appointment with her son’s psychiatrist, but because the doctor’s services are in such high demand, they usually cannot schedule an emergency appointment.
And she has given up on hospitals as a refuge.
In September alone, Brinson said, two hospitals sent her son away because they were not equipped to deal with his autism and bipolar disorder. A third hospital discharged him after 24 hours, she said.
After spending hours in emergency rooms and thousands of dollars on medical bills, the Brinsons ended up back at home time and time again.
“It’s a ton of time, resources and money and the outcome is the same,” she said. “There’s nowhere to take him.”
‘A state of crisis that’s never-ending’
Dr. Jim Bedford, the director of the UNC Program on Neurodevelopmental Psychiatry, said his patients and their caregivers are often left feeling desperate by the scarcity of resources for people with developmental disabilities.
“Families try their absolute best to get services and find what their loved one needs,” Bedford said. “When that service doesn’t exist or has such a long waiting list that it may as well not exist, they’re really in a state of desperation and crisis that’s never-ending.”
The state’s recent, significant investments in the mental health system — $835 million in the current budget — are cause for optimism, said Kelly Crosbie, the director of mental developmental disabilities and substance use services for the North Carolina Department of Health and Human Services.
Some of that money will go toward building out UNC Health’s new youth behavioral health hospital in Butner, which will soon open a unit specifically for children and teens with developmental disabilities, like Sam and Brinson’s son.
The North Carolina General Assembly also provided “limited funding” to improve staff retention and attraction at the state-run facilities for people with developmental disabilities; like most health care systems, staffing shortages have limited the number of patients they can admit, Crosbie said.
However, in a statement to The News & Observer, DHHS spokespeople cautioned that “significant, additional investments” are still needed to make their facilities competitive with other health care employers.
The 10-year waiting list
In North Carolina, beds in state-run psychiatric facilities for people with complex developmental disabilities are scarce partly by design.
As the state moved away from the idea that people with developmental disabilities should be institutionalized, it downsized the facilities in the hopes that community programs could provide treatment while keeping them at home.
But advocates and families say the network of community resources that were supposed to replace institutions has been underfunded and inaccessible, leaving families to manage psychiatric crises on their own.
One of the clearest examples of this shortcoming is the North Carolina Innovations Waiver, said Jennifer Mahan, the director of public policy for the Autism Society of North Carolina.
For North Carolinians with developmental disabilities, the waiver provides access to a wide range of services — they might qualify to have an aide help provide care at their home or get access to crisis services that private insurance might not cover.
With those resources, program participants are about 30% less likely to end up at an emergency department, according to a recent study from Duke researchers.
But it’s common for North Carolinians with developmental disabilities to wait years before getting access to the resources they qualify for.
The state’s wait list has more than 17,000 names, which translates to an average wait of seven to 10 years, according to the same study. The national average is three years.
Brinson put her son’s name on the waiver wait list when he was an energetic 8-year-old. About eight years later, she said, her 16-year-old son still has not made it to the front of the line.
Sam Cockrell was on the waitlist for seven years before getting services.
Part of the problem is that new slots in the program have not been added to meet the recent rise in people diagnosed with autism, Mahan said.
The number of North Carolinians with autism has substantially increased in the last two decades, according to data from the Centers for Disease Control and Prevention.
About 1 in 150 children were diagnosed with autism in 2000, according to the CDC. That number had jumped to 1 in 35 by 2020, which is in line with a national increase that researchers can’t fully explain yet.
North Carolina’s General Assembly decides how many waiver slots are added each year, Crosbie said.
“Some years we get 100 slots,” she said. “Some years we get no slots.”
Even though Crosbie was pleased that the program was granted 350 additional slots this year — to make a total of 14,736 slots — she said there will likely be hundreds more people who add their names to the waiting list.
“We desperately need more slots,” she said. “It’s too many years and it’s very discouraging and hard for families.”
Punished for seeking help
Since Tennessee, the Cockrells have cycled through hospitals again and again, still searching for treatment.
“We’re reliving the same day over and over,” said Crystal Cockrell, Sam’s mother.
The only difference now is that they have a new, added challenge: criminal charges against their son.
Because of Sam’s altercation at the Ranch, he now faces an assault charge in Tennessee.
The Cockrells fear that because they sought help for their son’s behavioral challenges, Sam will have a criminal history for the rest of his life, which Greg Cockrell fears will make it even more challenging for Sam to one day find a job.
“We are trying to get him the best help that we can get him but there’s just nothing,” Crystal Cockrell said. “We’re helpless. We’re absolutely helpless to provide anything for him.”
Sam’s court date is set for March.
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