In this half hour program, we talk with author Eric Garcia about his new book, We’re Not Broken: Changing the Autism Conversation.
Garcia uses his own life as a springboard to discuss the social and policy gaps that exist in supporting those on the spectrum.
David Camilo is about to take a big step toward more independence as he moves into his own house soon.
Camilo, 36, refers to himself as someone with “high-functioning” autism. Right now, he lives in Morrisville with his parents and works for his dad’s entertainment business as a DJ and an MC for weddings, birthdays and other events. He’s also part of the inaugural class of 15 people graduating from the NC Peer Mentor Training Pilot for people with intellectual and developmental disabilities (I/DD).
North Carolina is one of the first few states piloting a program to certify people with I/DD as peer support specialists. Peer support is an emerging trend in the health care world that has been particularly effective in supporting people with mental health and substance use recovery issues.
When facing a challenge or trying something new, people often want to learn from and listen to others who have been through similar experiences, Camilo explained.
“I could just say, ‘I know exactly what you’re going through, I’ve been there, you know, when such and such happened. And it wasn’t easy for me either, but because I did this and that, you know, I’m sure you can accomplish it too if you set your mind to it,’” he explained.
He already has experience as a mentor at a program called Ignite, which offers educational activities and workshops to help people with autism gain social, financial and employment independence. Camilo really enjoys the role and hopes to find employment as a peer mentor for people with I/DD after his upcoming graduation from the pilot program. He said he would prefer to work in a one-on-one mentorship setting.
As the pilot program comes to an end, project director and instructor Kelly Freidlander is hopeful there will be a second class.
“What we are hoping to do is to show it as a promising practice, get some data behind it, hopefully get some success stories or vignettes from people who graduate and get jobs,” she said.
With more evidence, Freidlander would like to present I/DD mentorship as a Medicaid waiver service and something that North Carolina’s behavioral health management companies — known as LME-MCOs — will include as the state transitions the Medicaid program to a managed care model. As part of that transition, the state is working on creating special “tailored plans” for people requiring more complex care, such as people with I/DD, low-income seniors living in care facilities and people with severe and persistent mental illnesses. Those plans are slated to roll out in 2022.
Freidlander sees a place for peer mentors on the care management teams that aim to work holistically with someone receiving behavioral health services.
“[Peer mentors] can make people realize possibilities that weren’t there. I think it can help people reduce their own limitations or reduce their limiting beliefs when they see another person who is successfully living in the community,” she explained.
Seeing a peer mentor who works or lives in the community — instead of with their parents or in an institutional setting — can also be reassuring for loved ones of a person with I/DD, Freidlander said. Family members often want to protect their loved one, but sometimes they can hold a person with I/DD back from things they are capable of, such as living more independently.
“I think it’s also a good check for the other professionals at the table. When you include someone who is similar to the person receiving [behavioral health] services, the dynamics and maybe the way the discussion happens, changes to be more person-centered and maybe a little more thoughtful,” Freidlander said.
Talley Wells, executive director of the NC Council on Developmental Disabilities, said his goal is to see one-on-one peer mentorship take place, but said he’d also like to see more people with I/DD included in important statewide level conversations.
“There’s also just too many critical issues happening that involve people with intellectual and developmental disabilities,” he said. “And one of the ways in which peer mentors can really get involved is through employment through peer mentorship, but also to be at the table when we’re when the state is talking about Medicaid transformation, the tailored plans, Olmstead planning and the 15,500-person waiting list [for Medicaid waiver services].”
Wells said that he hopes LME-MCOs will include peer mentorship as a defined, billable service as they move into Medicaid transformation. The need and desire for formalized peer-mentorship for people with intellectual and developmental disabilities are evident, he added.
“What really blew me away is that we had approximately 100 people apply for this, so there’s a real hunger within the I/DD community,” Wells said. “Whenever I have conversations with providers, LME-MCOs, others involved in the system, there’s just an interest. And what a great thing for North Carolina to lead the way in this.”
Briana Thompson, 27, said she applied to be part of the pilot peer mentorship program because she wants to shape a better future for people with I/DD and mental illness and help dispel the stigma and misunderstanding around these diagnoses.
“I like helping for a cause since this is going to be helping people in the future that have similar experiences that I have living and dealing with a society that discriminates against people who are mentally ill or disabled and not able to do things that other people would normally have a capability of doing,” she said.
As a person who describes herself as having high-functioning autism, Thompson said she doesn’t let people stop her from pursuing her goals and encourages others to do the same. She aspires to have a career in 2D animation and is currently pursuing a fine arts associate degree from Durham Technical Community College.
Thompson said she’s continually impressed by her peers in the mentorship program. She added that a few participants have difficulty forming words, but they still speak out, get their point across and are heard.
In 2004, two weeks after her high school graduation, Brittany Stone was driving to pick up her younger sister from vacation Bible school during a storm. She hit a pothole and lost control of her vehicle. In the accident, she suffered a traumatic brain injury.
Seventeen years later, Stone has landed a place at Whittecar Group Home in Raleigh, where she and five other residents get the help they need to live their lives. For the most part residents at the group home can take care of their basic needs, but Stone, for example, has trouble washing her back and hair because of tremors. She uses a walker to get around, but she does chores around the house. She can’t drive or run to the store independently.
The people who help the six residents live their lives start at a salary of $11.50 an hour. For Lutheran Services Carolina, the agency that runs Whittecar, it has been challenging to hire employees to help those with conditions similar to Stone’s. This year, with the pandemic, has been a particular challenge, especially since there needs to be a staff member at the house 24 hours a day.
Rholanda Artis, the program director for Whittecar, said the low wages turned away some potential employees.
“We had a job fair back in March,” Artis said. She said they had six job candidates. “It went okay, but the pay– they just didn’t want the pay.”
“When we said $11.50, and that was because of their experience, some had no experience, some had experience, and when I went up to $13.00, they said, ‘I just can’t make a living off that,’” Artis said.
Across North Carolina, the average hourly pay of direct care workers is roughly $5 an hour lower than retail jobs at corporations such as Target, Walmart, Starbucks and Costco, according to Karen McLeod, head of Benchmarks, an umbrella advocacy group for organizations that provide care for children and families. With an average pay rate of $10.31/hour for direct care workers, it is challenging to hire and retain staff.
House Bill 665 addresses the staffing crisis impacting care for individuals with disabilities, and House Bill 914 focuses on increasing the pay for long-term care workers. Both bills passed through the House Health committee Tuesday with overwhelming support, which bodes well for facilities like Whittecar.
Rep. Tim Moffitt (R-Hendersonville), the primary sponsor for HB 914, has a personal connection to that bill. Moffitt’s younger brother has severe autism, he told the committee, and Moffitt is the direct caregiver for his brother during homestays for about 60 days each year.
“It’s an important role. It’s a role that I treasure. It’s an appropriate role for an older brother, and we wouldn’t have it any other way,” Moffitt said.
For a long time, Moffitt said he didn’t know how much his brother’s care providers received.
“When I found out what the wages were, candidly, I was embarrassed,” Moffitt said. “These direct care workers are so valued in our lives. We haven’t really appropriately valued them from a compensation standpoint.
“So I’m on a mission. I’m on a mission to make sure that we have enough resources to appropriate to that group of direct care providers to where they can take care of those that are most vulnerable in our society. That’s their role. It’s our role as policymakers to make it happen.”
The Support Our Direct Care Workforce bill, would provide a Medicaid rate increase for the agencies that employ these direct care workers in a variety of settings:
Adam Sholar from the North Carolina Health Care Facilities Association said that about two-thirds of all nursing home residents in the state receive Medicaid reimbursement. He also explained that Medicaid reimburses for care at the lowest rate of any other payer. He argued it’s the main factor contributing to nursing shortages in the state and he said he’d like to see more funding from Medicaid.
Medicaid’s low rate, “really constrains what we’re able to pay in wages,” Sholar said. He said that in the cost report data submitted to federal agencies, he can see that many facilities operated at a net loss in recent years.
Medicaid reimbursement is set by the state, and state dollars pay for a third of costs, with federal matching dollars making up the difference.
“We’re doing as much as we can to increase wages to try to attract more caregivers into the profession,” he said. “It’s the Medicaid piece of that we need to see meaningful movement from. We need increased funding from the Medicaid program.”
McLeod said about 92 organizations have banded together to push for passage of HB 914, ranging from providers of direct care to people with disabilities to mental health agencies to advocacy groups.
“We brought all the industries together,” McLeod said. “What’s been happening prior to this, is each of our industries would go after money specifically for our independent agency. We reached out to all the different industries and said, we’re just robbing Peter to pay Paul, we all share the same workers and will have a much greater voice, and people will understand how important this need is in the crisis we’re in if we do a collective bill.”
With support from the 92 agencies and the movement of the bill to the Senate, some challenges that Artis and others at other residential facilities face will be mitigated.
Reps. Gale Adcock (D-Cary) and Hugh Blackwell (R-Valdese) both expressed concern about how the money in the bill would be appropriated. One mechanism is through putting the measure in its entirety into the state budget, which has yet to be written. Another way to push for the pay increases would be to pass HB 914 and HB 665 as standalone bills.
“I don’t like being even remotely a harbinger of doom, but we lost this last time,” he said, referring to the state budget in 2019 that contained increases for direct care workers. That budget was vetoed by Gov. Roy Cooper in a disagreement with the legislature over Medicaid expansion. “We need to be sure we don’t lose it again, if there’s consensus on this, and we’re going to do it, seems to me the sooner we do it the better.”
“If we tie something that’s critical like this to that budget, we could be tying it to an anchor and dropping it off the boat,” Adcock said after the meeting. “That’s not what we want to do.”
That’s not what they want either.
For Artis and other employees at Whittecar, increasing wages could mean less overtime and more staff and could alleviate stress for their workers who sometimes need to work multiple jobs to make ends meet.
Despite the challenges of the work, Artis said the residents are like family. Her co-worker Shari Webb sat on a couch next to Stone, the two of them giggling as Webb elbowed Stone in the ribs.
“I’ve lived in Greensboro,” Stone said, referring to one of her previous homes. “It’s a lot nicer [here.]”
“We’re here because we love what we do,” Artis said. “That’s what we want to promote here, and that’s what we want to bring in is someone that’s going to treat them the same way that we treat them.”
Though both HB 914 and HB 665 had an easy path through the House committee Tuesday, the future of long-term care facility worker pay and retention remains to be determined by the full House of Representatives and the Senate in the coming weeks.
NC Health News editor Rose Hoban contributed to this story.
Correction: This story originally stated that the Whittecar Group Home was run by Easter Seals UCP of North Carolina and Virginia.
Samuel Robinson, a 9-year-old with autism spoke into the microphone at the legislative building Tuesday morning, calling out greetings, “Hi Tina,” to good-natured laughter from lawmakers and families in the press conference room at the North Carolina General Assembly building.
His father Kyle Robinson choked up when he talked about the fact that in the past Bobby had been non-verbal.
“From a little boy that, as a dad, you don’t know if he’s ever gonna… if he’s ever going to say ‘Hey Da-da, or give you a hug,’” Kyle Robinson said.
He explained that Samuel has been receiving applied behavior analysis therapy since he was 2-years-old. Over recent decades, ABA therapy has emerged as one of the most effective modalities of care for children with autism.
“Now, he talks all the time,” the elder Robinson said to more good-natured laughter as Samuel interrupted him.
What brought the Robinsons and other families to the legislative building this week is the introduction of a bill intended to make it easier for ABA therapists to practice in North Carolina. According to bill sponsor John Bell (R-Goldsboro), the bill will be “hugely beneficial to families across the state.”
“The positive impact [of ABA] has been on families and those with autism cannot be overstated,” he said.
“North Carolina is the only state in the country where behavior analysts who provide highly effective treatment to children with autism are unable to practice independently,” he explained later in the morning to the House Health committee. “Under current state regulations, qualified professionals must operate under the supervision of a licensed psychologist.”
Bell’s bill, House Bill 91 (which has a parallel Senate bill, SB 103) has more than 50 co-sponsors from both sides of the aisle. It would remove that supervision requirement, create a path to independent licensure, establish a licensing board to oversee ABA therapists and allow for the therapists to bill health insurers from commercial plans to government payers, such as Medicaid.
Bell and other co-sponsors say that it will also make the therapy more accessible to families who have children with autism around the state. Whether the bill will make a significant difference, however, is somewhat in doubt.
Since 2015, ABA therapists have been able to be reimbursed for their treatments by insurers in North Carolina, after a long fight. The original bill allowing for the billing was introduced in several prior legislative sessions, and former House speaker Thom Tillis championed the measure.
ABA treatment can be ”intense,” explained Lorri Unumb, a then-representative of the advocacy group Autism Speaks, who led the charge in North Carolina to get the reimbursement bill passed for several years.
The treatment uses positive reinforcement and repetition – sometimes extreme repetition – to help break through the communication difficulties these children have and help them learn basic skills. Specially trained and certified therapists take each skill – from feeding oneself to bathing and dressing, even waving good-bye – and break it down into component parts.
Unumb told NC Health News in 2013 that the therapy works better the younger the children start, but it is usable for older kids too, and even adults.
“So much of learning that children do is based on imitation, but a lot of severely impacted children don’t have that skill,” Unumb said.
That level of one-on-one interaction doesn’t come cheap. It’s time-consuming – requiring as much as 40 hours in a week – and it must be delivered by a therapist who can interpret incremental progress in the child.
But families like the Robinsons say it’s allowed them to have more interaction with their children and helped Bobby move through the world more easily. Other families say they’re grateful for ABA training their children to do things such as toileting and dressing themselves.
Board-certified behavior analysts, or BCBAs, have to complete graduate-level education, pass a board certifying exam and complete as much as 2,000 hours of supervised practice in order to be licensed. Thirty-one states now license the therapists to practice, but according to Bell, no other state has the supervision requirement that North Carolina does.
“There are a total of 62 psychologists in all of North Carolina that are qualified to provide this type of supervision,” said Matt Filer, who runs Mosaic Pediatric Therapy, the largest company in the state providing ABA services. “That’s 62 supervisors for over 65,000 children with autism.”
“This regulation … strangles job growth by discouraging BCBAs from coming to our state, and dissuading young North Carolina professionals from pursuing careers as BCBAs,” Filer said. “To meet the current needs, North Carolina must add 6,000 new board-certified behavior analysts and that is an impossibility under current regulation.”
Loosening up licensure for BCBAs in North Carolina may not provide the relief that parents are looking for anytime soon.
A review of the landscape published in late 2019 found there are just too few BCBAs in the entire U.S. Researchers used national data from the Behavior Analyst Certification Board and found that only Massachusetts had enough practitioners to meet demand. North Carolina had only about one provider per 100 children who needed services when the study authors found that about six providers would be enough to satisfy the unmet need. Florida had the most ABA providers in the Southeast with less than four practitioners per 100 children with autism spectrum disorder.
“Workforce policies are needed to increase the supply of ABA providers if we want to increase access to these services,” said senior author Janet Cummings, from Emory University in a press release on the study. “If there are not enough ABA providers in a community, then efforts to improve early screening and identification will not necessarily lead to an increase in the receipt of ABA among youth in need of these services.”
An investigation by North Carolina Health News done in 2018 also found there were only a few hundred therapists in the state at the time, resulting in long waits for access to services. That number has ticked up to about 650 therapists in the state, plus about 1850 behavior analysis technicians who carry out the bulk of daily treatment.
The supervision requirement creates an additional hurdle, according to Monique Baker, who runs a small company staffed with BCBAs and technicians who provide services to about 50 children.
“Recently, the licensed psychologist supervising all of our BCBAs had to resign effective the end of this month,” she said during Tuesday’s press conference. “I placed ads in agencies across the state, utilized social media, reached out with personal emails and have not been able to locate one single qualified individual to supervise the services that we provide for children with autism.
“This North Carolina-specific barrier creates huge issues with access to care, causes long waitlists and forces higher cost to businesses. It also serves to create situations such as mine.”
BCBAs are not the only health care professionals who are looking to be released from similar supervision requirements, all advanced practice nurses such as certified registered nurse anesthetists and certified nurse midwives have long looked to be released from supervision requirements. The state’s medical societies have pushed back against eliminating supervision requirements for years.
Releasing BCBAs would be a first in the state, and it seems more likely to happen given the state’s psychological association has expressed support for the bill.
“We appreciate the opportunity to help craft language for the bill so that it provides the best licensure bill possible and maintains the integrity and scope of practice of other professions,” wrote North Carolina Psychological Association executive director Martha Turner-Quest in a statement sent to NC Health News.
But the Psychological Association has supported the measure before. An almost identical bill, House Bill 671, was filed in the last long legislative work session in 2019. It also would have created a pathway to licensure for the ABA therapists and a governing board to regulate them. It passed the House of Representatives almost unanimously but died after being sent to the Senate without getting a hearing.
“This bill is a step in the right direction,” said Rep. Gale Adcock (D-Cary), who is a nurse practitioner and has long pushed for removing the so-called scope of practice restrictions. “We, as a legislature, should pursue the removal of all unnecessary regulations for all providers, because citizens deserve the care that they need to be able to get the care they need.”
Adcock explained that there’s some support for removing scope of practice restrictions in the state senate, but noted that some in that chamber have resisted adding new licensing boards.
Nonetheless, she noted that there are some powerful senators who she believed would be in support.
“If it gets through the Senate, and it passes, what this says is we have a legislature that understands that too much regulation can prevent people from getting the care they need,” Adcock said. “It shows an enlightened legislature that’s willing to consider where can you do the most good, to lift this regulation and allow people to get the care they need.”
When Sonia Padial’s grieving son swallowed too many Tylenol, she took him to the hospital for help.
She says her son, Andrew — whose name has been changed to protect his identity — has autism. He struggles to process emotions, especially around loss. He’s an introvert and forms stronger bonds with animals than other people. So when his dog died a week after his 18th birthday last year, Andrew took it harder than most.
The staff at the UNC Hospital Emergency Department in Chapel Hill decided that Andrew needed to be checked into a psychiatric hospital. They began the process to involuntarily commit him, even though Padial said that her son was willing to get treatment and had been cooperative with the medical staff.
Involuntary commitment (IVC) is a legal process in which a layperson or medical professional asks a judge to order mental health or substance use treatment for an individual against their will. It’s supposed to be used when a person is an immediate “danger to themselves or others.” It results in the temporary loss of an individual’s right to make their own health decisions and forces people to have treatment.
Despite pitfalls, counties leave psych patient transport in sheriffs’ hands
When a psychiatric bed became available for Andrew at Holly Hill Hospital in Raleigh, Padial said she and her son were shocked and unprepared for how he would be transported there.
Andrew was put in a sheriff’s vehicle with handcuffs on his wrists and shackles on his ankles. A deputy drove him and two other middle-aged male patients — all in restraints — to Raleigh, while Padial followed behind.
Starting the IVC process triggers a custody order to be sent to local law enforcement who then pick up and transport the patient to the hospital. Padial said she pleaded with hospital staff to allow her and her family to drive Andrew instead, as she had been allowed to do in the past when he needed inpatient psychiatric care.
Hospital staff apologized, but said, “this is the way it’s done,” Padial recalled.
“I told them that this would be traumatic and was going to make it worse,” she said.
And it did. A few weeks after Andrew came home from the hospital, Padial said he was struggling again. This time he displayed signs of PTSD, including flashbacks, nightmares, panic attacks and withdrawal from others.
The handcuffs dredged up memories of childhood trauma and seclusion, which Padial said occurred during a previous encounter with the medical system.
“And what I did not do was take him back to the hospital,” she said. “I was not going to put him through it again.”
“This is not health care,” she added.
In North Carolina, stories like Andrew’s are becoming more and more common. In the last decade, there’s been a 91 percent increase in the use of involuntary commitment (IVC) in the state.
Forced psychiatric treatment is on the rise nationally as well. A recent study found that the rate of involuntary commitment is climbing three times faster than the population growth in 25 states for which IVC data is available.
Everyone interviewed for this story — state health officials, doctors, social workers, policy experts, lawyers and mental health advocates — agreed that involuntary commitment should be used as a very last resort. So why has there been such a huge increase?
It’s complicated. But some common themes emerged when talking with those who work in and around North Carolina’s mental health system.
Because of the waning number of community mental health resources, more behavioral health patients are showing up at their local emergency rooms. And they are showing up sicker.
When Angela Strain, head of emergency psychiatry at UNC Hospital, did her residency in Chapel Hill more than a decade ago, most behavioral health patients could be evaluated and admitted to the hospital for inpatient treatment fairly quickly. Today, Strain said that so many more patients show up to the ER for psychiatric help that UNC cannot treat them all on-site. She has to refer them out to other hospitals.
“Unless you have a very solid family unit that’s going to transport a very willing patient, really the only safe way to get someone from one hospital to another hospital is involuntary commitment with a sheriff’s deputy,” Strain said.
In her experience, patients 12 years and older who leave UNC Hospital with an Orange County Sheriff deputy are cuffed. Strain said she often sees the same two officers, who have experience transporting IVC patients, and they use some discretion in regard to restraints.
Type a county name into the search box to find out what’s happening in your county.
It’s not uncommon for hospital staff to initiate an involuntary commitment because the patient needs safe, reliable transportation to another facility, according to Mark Botts, a University of North Carolina at Chapel Hill School of Government professor who specializes in mental health law.
He’s done IVC training with hospital staff around the state for 25 years. During these sessions, some have told Botts that it’s difficult to arrange transportation for a patient without initiating an involuntary commitment.
“Under the IVC process, law enforcement is obligated to provide the transport,” Botts said. “If it’s voluntary admission, there’s no obligation on any party to transport the patient.”
If you’re in the emergency room due to a heart attack and you need to be transferred to a special cardiac program, an ambulance will likely take you there. So why doesn’t North Carolina use them to transport mental health patients?
“We provide transportation for all manner of other health crises. But when it comes to behavioral health, we act as if it’s this big mystery of how we move people from one place to another. And that’s absurd,” said Disability Rights NC lawyer Corye Dunn.
“We have a ridiculous number of IVCs,” she said referring to the 91 percent increase over the last decade. “And a lot of it is that it’s the default setting for the hospitals.”
Most counties reserve ambulances for patients with acute medical needs who may need fluids or oxygen on the way to the hospital, said Carrie Brown, Chief Medical Officer of behavioral health at the state Department of Health and Human Services. “That’s always going to have to be the priority.”
But using law enforcement for involuntary commitment transfers isn’t unique to North Carolina.
“The entire country has reverted to law enforcement for transportation of IVC, which on principle doesn’t make a lot of sense because there’s no crime being committed,” Brown said. “But it’s a very secure way to get people from one point to another safely.”
Recent changes to North Carolina’s IVC law required behavioral health management organizations (LME-MCOs) to work with the counties they cover to create community crisis plans, which include transportation of IVC patients.
In short, counties are not required to use law enforcement.
In a new IVC training developed by DHHS, Brown said the department has gone on record saying that involuntary commitment should never be used just because someone needs a ride.
“That’s not what involuntary commitment is about,” she added. “Involuntary commitment must be a last resort. And oftentimes, you can accomplish a voluntary admission, it just takes a little more time.”
Another reason voluntary patients are being involuntarily committed is the misconception that the inpatient psychiatric facilities require it.
Last year when a teenage girl in Chapel Hill was having thoughts of suicide, she agreed to go to the UNC Hospital emergency department for help, her father told NC Health News. He recalled doctors telling him and his wife that they could transport their daughter once a psychiatric bed opened up.
“Based on the current evaluation, if receiving facility allows (sic), it would likely be appropriate for parents to transport patient to another hospital given that patient has a good relationship with parents and is seeking help,” the attending psychiatrist wrote in the patient’s records, which the father provided to NC Health News.
The very next line in the patient’s medical chart says that a bed became available and commitment papers were filed. The father felt blindsided when he learned his daughter had been involuntarily committed and that a law enforcement officer was there to drive her an hour and a half drive to the next hospital.
At multiple IVC training sessions throughout the state, Botts has heard hospital workers say that the psychiatric hospital will not take the patient unless the IVC process has been initiated.
Strain, the UNC Hospital psychiatrist, said that the state hospitals — Central Regional, Cherry and Broughton — “won’t accept a patient who is voluntary. Some of the community hospitals would potentially take a patient voluntarily if we had a safe way to transport them there.”
In Mecklenburg County, public defender Bob Ward said he frequently represents clients in involuntary commitment hearings who willingly seek help.
“So I’ve had situations where the doctors don’t like it, the patients don’t like it, and they’re cooperating with treatment, but then they want to go to Broughton to get the help that they need,” he said. “But Broughton will not accept you unless you are committed.”
“You basically have to agree to say, ‘Yes, I’m a danger to myself or others,’ which is pretty discouraging if you think about it,” Ward said.
However, DHHS’s Chief Medical Officer Brown denied this, saying an IVC is not required for admission to the state’s psychiatric hospitals.
In some ways, involuntary commitment is the safest path of least resistance.
“IVC gives them the ability to streamline this process and guarantee no hiccups from the patient side, even if that might not be entirely necessary,” said Botts, of the UNC School of Government.
There’s a concern that if the patient is transported by family, someone may change their mind on the way to the second hospital, he added. And the patient may not arrive or be admitted safely.
IVC is also the path with the lowest risk of liability. There is a common fear that a patient will jump out of a car on the drive from one hospital to another, according to several people interviewed for this article.
Strain said that while there are situations where family members of psychiatric patients from UNC Hospital drive them, it’s not the most common route.
“There’s a lot more liability putting someone in a personal vehicle,” Strain said.
At Disability Rights, Dunn said she often hears from health providers with concerns about a patient’s ability to give “informed consent.”
“Which is troubling,” she said. “That’s because they’re worried about liability. But because they’re worried about liability, our clients can’t get the services they need and want without losing their rights, which is a huge disincentive to seeking treatment.”
Forced treatment under involuntary commitment can deter people from seeking future mental health care.
Young people report feeling more depressed and distrustful of the mental health system after being involuntarily committed, according to a 2019 study out of the University of South Florida. USF behavioral health researchers interviewed 30 teens and young adults about their experiences being treated under IVC.
The majority said that they would be hesitant to get help next time.
“After the first time I was [IVCed], I felt like if I confided in someone that I was upset, that they would — even if I wasn’t suicidal — that they would [hospitalize] me,” one study participant said. “I felt almost like I was being punished for my feelings. You should be able to feel confident in saying that you’re sad without fearing that you’re gonna be locked up.”
And though there are sheriff’s deputies who work with mental health patients who are experienced and trained in de-escalation techniques, that’s not always the case.
Earlier this year, WBTV reported a story with a video of a teenage boy who was tased and beaten by security guards and a Lincoln County sheriff’s deputy after his mother took him to the hospital for psychiatric help. His mother told WBTV that her son had been treated for mental health issues in the past and was already reluctant to go to the hospital that day.
At UNC Hospital, Strain said that the default for transportation has been the sheriff. She added that UNC is currently working on an alternative transportation plan for their mental health patients.
“We don’t want to be criminalizing mental illness,” Strain said. “Nobody likes the idea of putting someone who is in a psychiatrically fragile state into shackles in a police vehicle. We definitely hear about it from parents when kids have to go. And we hear about it from adult patients who have a history of trauma, with police or having been confined.”
Taking someone’s rights away and tying their wrists and ankles together in the course of mental health treatment can be an extremely traumatizing experience.
“And to take somebody who’s experienced powerlessness through trauma, and then to remove their power, through involuntary commitment is like compounding trauma on top of trauma,” said Cherene Allen-Caraco, CEO of Promise Resource Network, a peer-run mental health services agency in Charlotte.
Allen-Caraco speaks from experience as a survivor of complex trauma.
“[Involuntary commitment] for me, personally, would be more excruciating, more harmful than anything that could possibly be helpful that came from it,” she said.
Caring for people with complicated mental health issues requires the time and skills to navigate tough situations and conversations, including those about self-harm and suicide, Allen-Caraco said.
“You can’t go to the default of ‘go to the hospital,’” she said. “To do this kind of work well, you need to establish relationship and trust and be comfortable with uncomfortable situations.”
For Padial’s son Andrew, the trauma evoked by the IVC process was so severe that he moved to live with a family member in another state. He feels better now that he’s far away from the place where it all took place, Padial said.
“Though he did nothing wrong, he felt criminalized and humiliated for having a mental illness,” she said. “That experience changed all of our lives. We have a different kid now.”
Padial is working to complete her social work degree and advocates to change the IVC process in North Carolina. And though the last year was tough for Andrew, Padial said he’s attending community college classes and wants to help people like himself someday.
This article includes sources who North Carolina Health News chose to grant a degree of anonymity. We verified the identities and stories of those whose names were changed through interviews and reviews of video and medical records. We changed Sonia Padial’s son’s name to Andrew to protect his identity and blurred his face in the photos. Andrew agreed to the use of his story and photos under these conditions. NC Health News also granted anonymity to a Chapel Hill father and his teenage child due to the sensitive nature of their story.
Bridget Narsh said she was unhappy that her son, Mason, spent 26 days this summer in a “windowless room” at UNC Hospital’s Emergency Department in Chapel Hill.
Mason is a 15-year-old with autism, ADHD, anxiety and PTSD. The changes and disruptions generated by the coronavirus pandemic have been difficult for him and the whole family, she said. He’s had angry outbursts, ran away from his parents in public and at home, and refused to take his medications.
When things get really bad at home, Narsh said she has no other option than to take Mason to the hospital to be evaluated and admitted to an inpatient psychiatric facility for treatment. Narsh recalled at least eight times she’s taken Mason to the hospital for mental health care over the last few years.
“When I go to UNC, I know it’s just a holding spot for him,” she said.
During his last stay, Narsh said her son was put in restraints multiple times because the staff does not always know how to help him.
Are students with disabilities being left behind? Challenges of virtual learning.
Families Still Pushing for Access to Autism Therapies
For 11-year-old in ER, The Wait for a Psych Bed is 10 Days
“I’m tired of hearing that they are not equipped for Mason,” she said.
Emergency departments were never designed to board behavioral health patients for long periods of time, said Jane Brice, a physician who’s head of UNC Hospital’s emergency medicine service.
“Our behavioral health population is enormous,” she said. “These folks languish in our emergency department for days and weeks and sometimes — unfortunately — months, waiting for a bed to open up or somewhere for them to go.”
“That is so wrong,” Brice said.
But this is how inpatient psychiatric care works in North Carolina. Patients go to the emergency room to be evaluated. Then they wait.
Though the number of mental health patients seeking inpatient psychiatric care dropped immediately after Governor Roy Cooper’s stay-at-home order in March, wait times for admission to the state’s psychiatric hospitals were higher this spring, averaging just over one week.
Over the last fiscal year, a total of 2,646 patients waited an average of six days for admission into one of the state’s three inpatient psychiatric hospitals. Average wait times vary by facility, ranging from three days for admission to Cherry Hospital in Goldsboro to 14 days for admission to Broughton Hospital in Morganton.
Additional pandemic safety measures could be a factor in the increased wait times. At each facility, state hospital officials designated quarantine units for new admissions, as well as units for COVID-19 positive patients and for those with possible exposure to the virus.
While state psychiatric hospitals didn’t close beds, admissions have been delayed as patients are safely admitted through a quarantine unit, N.C. Department of Health and Human Services officials said in an email.
In general, patients were more reluctant to go to the hospital this spring due to fear of contracting coronavirus. And those who delayed care often showed up at the emergency room sicker, including those with mental health issues. Hospital officials across the country reported this phenomenon, one that Brice said held true for UNC as well.
As North Carolinians have learned about the virus and become more comfortable wearing masks and practicing other prevention measures, Brice said her emergency department numbers have returned to normal.
When Brice took charge of UNC Chapel Hill’s emergency department five years ago, she began to see a steady increase in mental health patients. Her counterparts across the country reported similar trends.
“We decreased outpatient resources so people who are struggling don’t get the care they need, and then they get worse,” Brice said.
Despite federal laws passed more than a decade ago calling for mental health to be treated on par with physical health, it’s still difficult to get comprehensive mental health insurance coverage. North Carolina has failed to treat mental illness the same as other illnesses, such as heart attacks or strokes. So patients go to the option that should be their last resort.
“Then it becomes an emergency, and they come seeking emergency psychiatric help because they are really psychiatrically ill,” she added. “And then we don’t have anywhere to place them for inpatient care because we decreased those services too.”
Brice became alarmed as she watched more mental health patients waiting longer and longer in her emergency department.
“We didn’t have a safe environment for those people,” she said. “The patients were injured, our staff were injured. Everyone was distressed on multiple levels, morally, ethically, clinically.
“We all saw it was just wrong.”
The emergency department was not built or intended to board mental health patients, and the regular staff was not equipped for this kind of care, Brice said. So she went to the top and asked UNC leadership for help.
“This is a population that’s often overlooked in our society and many people don’t care,” she said. “I didn’t know what kind of reception I was going to get from UNC leaders, but I was shocked at how much they cared once they understood the magnitude of the problem.”
First Brice was given resources to hire psychiatrists, as well as psychiatric social workers and nurse practitioners to work in the emergency department.
Then last month, UNC opened a new unit in the emergency department to provide more space for behavioral health patients. The new unit is divided into three separate areas with 12 beds each. The 12-bed pods can be further subdivided if needed, Brice said.
This will allow for the grouping of patients so that geriatric patients can be kept together in one area and pediatric patients can be held in another.
“Cohorting patient populations is not only about safety. It’s also therapeutic,” Brice said. “It allows for group therapy with groups of people who have similar problems.”
UNC is fortunate to have the resources to make these changes, and Brice acknowledged that. She said several departments were moved to make space for this new unit at UNC Hospital, and it will not make the hospital any money.
“We lose an enormous amount of money in the care of these patients. Many cannot work due to their illness, or they are uninsured or underinsured, and our state didn’t expand Medicaid,” Brice noted.
Most emergency departments around the state cannot provide this level of care for psychiatric patients, particularly in rural areas. Many rural hospitals run in the red each year due to the large number of uninsured patients they treat in their emergency departments.
In a meeting with the governor last year, the CEO of Northern Hospital in Mount Airy said his emergency department sees between 50 to 60 mental health patients a month who are waiting for a psych bed. The hospital doesn’t get paid for treating these patients, he said, adding that North Carolina needed to expand Medicaid.
In the end, these hospital stays are only a Band-Aid for most patients with a mental illness.
Mason has already been hospitalized twice this year. In the spring, he spent 78 days at Central Region Hospital, one of three state-run psychiatric hospitals, according to his mother, Bridget Narsh.
Earlier this month, state health officials announced $7 million in COVID-19 relief funds to connect people to preventative care and mental health supports, particularly in marginalized communities. By providing more community services, state officials hope to prevent behavioral health patients from ending up in the emergency department.
After watching her son cycle in and out of hospitals, Narsh requested the reserved capacity Innovations Waiver, a North Carolina Medicaid program for people with disabilities who need regular assistance to continue living independently.
But these services are extremely difficult to get. The typical Innovations Waiver has a waitlist that can be up to 10 years long. However, the reserve capacity slots are for emergency situations when there is an “imminent risk of immediate harm,” according to the application.
After 26 days of waiting in the UNC emergency department for a psych bed for the second time this year, Narsh got the call that Mason was approved for the emergency waiver services and she took him home.
“He went from having no services to everything you can imagine for life,” Narsh said. “It’s extremely rare to get this at age 15. Things have to be pretty serious to get something like the reserve capacity.”
She said she was shocked to hear the list of services available to Mason and her family, everything from a therapy dog, to a certified aid for her son, to respite hours for her and her husband.
Just in the first few weeks, Mason is doing much better with a three-person intensive home team that shows up several days each week, and ABA therapy twice a week, she said. The waiver services got off to a rocky start as fewer aides are available right now, but Narsh said she feels as though her son “hit the mental health care jackpot.”
“In the long run, I’m hoping that he’ll never have to go back to the emergency department,” she said.
