NC’s behavioral health system puts children with complex needs – and their parents – in impossible situations

Jaiden Wakem’s story illustrates the failures of NC’s service system for children with developmental disabilities. Image: AdobeStock

Earlier this month, a North Carolina father contemplated an unthinkable decision: should he bring his 12-year-old son home from his group home without the services necessary to keep his son and the rest of his family safe, or abandon his son by not picking him up at discharge?

In considering giving up his child, this father risks judgments and assumptions, though none of them would be accurate. The reality? He loves his son unequivocally. It is because he loves his son that he is pondering this horrific choice.

Jaiden’s story

Peter and Mandy Wakem’s son, Jaiden, has Fetal Alcohol Syndrome (FAS). FAS is a developmental disorder with physical, mental health, and intellectual disabilities caused by exposure to alcohol before birth.

Jaiden has intellectual disabilities, very slow processing and a history of trauma. Through no fault of his own, he cannot regulate his emotions. He gets extremely upset when things move too fast or he can’t figure out what is going on. When he gets upset, he can become violent.

Several years ago, Peter and Mandy adopted Jaiden and his younger brother, who also has a trauma history and symptoms of Fetal Alcohol Spectrum Disorder (FASD), though he hasn’t been tested yet. They were looking for children to love and share their lives with and turned to adoption when they couldn’t have children of their own.

Jaiden’s parents have done everything they can to care for their son. They want more than anything to bring Jaiden home. But he is not a little boy anymore. In his father’s words, he is “190 lbs. of raw power with 4-year-old cognitive processing.”

What do you do when your adult-sized, developmentally disabled child has powerful and intense frustrations they can’t understand or control, and it leads to violence? There should be help – qualified, compassionate care providers and doctors to advise families, and consistent neuro-diverse community-based services to help manage and improve the behaviors at home. Preventative care can keep things from escalating into crisis and keep children home with their families where they belong.

However, there is no such help available for Jaiden. And inexcusably, Jaiden and his family are not alone.

Every day, North Carolina’s abysmal behavioral health system puts families and children with complex behavioral needs in impossible situations, forcing them unnecessarily into crisis. Loving parents are frustrated and worn out in their unsuccessful efforts to get their kids the help they need, until they find themselves considering an unthinkable choice.

NC fails our children with disabilities

In North Carolina, the state Department of Health and Human Services (DHHS) contracts with Local Management Entities/Managed Care Organizations (LME/MCOs) to manage the care for kids and adults with intellectual disabilities and complex behavioral health needs like Jaiden’s. Vaya Health, the organization that manages and pays for Jaiden’s services, is one of six LME/MCOs in North Carolina. Each LME/MCO gets a specific amount of money for each person in their geographic area. Vaya serves 31 counties.

MCOs are DHHS’s gatekeepers, with the power to approve or deny the services each person gets. They are obligated by their contracts with DHHS and federal law to make sure that people with disabilities get services and supports in the least restrictive environment – their legal right.

However, there is a huge conflict of interest. Specifically, these gatekeepers are financially incentivized not to give people what they need to stay in their communities, heal, and thrive. Because this is a managed care system, LME/MCOs can cut costs by denying services. Across the state, LME/MCOs sit on hundreds of millions of dollars while they deny kids like Jaiden the supports and services they need to have integrated lives in their communities. By reducing costs, LME/MCOs can appear to be saving the state money, but the long-term consequences of denying kids services they need will cost much more.

The impact on disabled children and their families is devastating. Vaya Health approved traditional mental health services for Jaiden but refused to provide services that accounted for his FAS. Kids with developmental disabilities like FAS do not respond to traditional mental health treatment. For treatment to be effective, Jaiden needs a qualified mental health provider with experience in intellectual and developmental disabilities (I/DD).

Without needed supports and developmentally appropriate treatments, Jaiden’s behaviors escalated. Vaya again denied the community services he needed and sent him instead to an out-of-state psychiatric residential treatment facility (PRTF) – an expensive, locked institution paid to focus on mental health, but lacking expertise in developmental disabilities like FAS. There is little evidence that these facilities provide clinical benefits at all. He was far from home and without oversight.

This was in 2019. Jaiden hasn’t lived with his family since.

What healing and progress could Jaiden have experienced if the developmentally appropriate solutions had been given to him when and where he first needed them?

When LME/MCOs don’t do the part of their job that requires them to ensure a wide array of community services are available to people with disabilities, it sets up kids and adults for failure. And these situations can readily escalate into crisis. Then LME/MCOs scramble to find a bed in an institution, and in this case, a locked institution that wasn’t equipped to meet Jaiden’s needs.

DHHS could and should hold LME/MCOs accountable for this breakdown, but it doesn’t. Instead, it continues to give them millions upon millions of public dollars without requiring them to do their job.

This is a failed system. The question is, how many lives are expendable? What will it take to make DHHS finally do something about this problem?

A father’s appeal

And so, Jaiden’s dad contemplates the unthinkable. The night before he was supposed to pick Jaiden up, Mr. Wakem emailed an appeal to state officials at the DHHS, Vaya Health and advocates, including Disability Rights NC. This is what he sent (minor edits made for clarity):

Due to the missteps, inadequacies, and failure to respond with any urgency of Vaya, [t]omorrow at 10:00, [m]y son who suffers from brain damage, a highly traumatized 12- year-old with low cognitive abilities is going to be discharged. If an appropriate placement is not found for my son, I am responsible for picking up Jaiden and bringing him back into the home. A home with his younger brother who is highly traumatized by the violence around him and inflicted upon him.

My wife, Mandy, has also been attacked and the only person that was able to handle the situation was me, but this is when he was 9 years old and 79 lbs. Now at 190 lbs. of raw power with 4-year-old cognitive processing, I will not be able to stop him. I cannot keep Jaiden safe from himself and I cannot keep the rest of the family safe from Jaiden.

My only option is to not take possession of Jaiden. What I understand this is called child abandonment, and my only move would be to relinquish my rights as a father.

How this may help get appropriate service for my son Jaiden –

I may be able to get a chance to stand in front of a judge and show the mounds of paperwork, binders full of meticulous records of missteps, misdiagnoses, ball drops, unanswered emails, investigations, therapists and doctors that have not helped, multiple rounds of inappropriate therapies, countless hours of focused parenting, multiple IVCs [involuntary commitments], and hospital commitments, along all tiers of care, some of which have traumatized him further.

Jaiden requires complex care to support his symptoms. He requires a developmentally appropriate treatment facility. We will not stop fighting for his best care. Even if it is devastating for us as parents.

Vaya is directly responsible for the continued trauma by their failure to provide the appropriate assessments and care.

If we had the support we needed from the mandated provider, from the beginning, we might not be here, However, we will be villainized for what we are forced to do. Let it be known, [w]e begged and pleaded for help, and here we are.

If tomorrow results in us facing abandonment or neglect charges, Vaya should face the same charges.

What would you do in this situation? How far would you go to keep your child safe, to keep the rest of your family safe? Would you be willing to give up your child, or would you bring him home? I thought through these questions as I read Mr. Wakem’s email, my heart breaking for his son who hasn’t been able to live at home since 2019.

If this was cancer, or diabetes, or a broken leg, would anyone second-guess a parent’s request for treatment? Jaiden’s condition warrants the same kind of empathy as other medical conditions. His behaviors are not his fault. He desperately needs treatment, therapy, and a chance to experience love and belonging at home with his family. Why do we think that treatment is optional for conditions that cause behavior challenges?

Mr. Wakem’s email was a desperate attempt to call attention to a system that refuses to provide the help Jaiden needs to live at home. For now, he doesn’t have to make a decision. At the last minute, Jaiden’s discharge was postponed because Vaya finally scheduled him for a thorough assessment to qualify him for additional services. The assessment will take place later this month. Until then, the group home has agreed to let him remain there.

But what will happen after that? There is currently no viable placement to give him the developmentally appropriate care he needs to be well enough to come home. And even if there were and he did get well enough to return home, would Vaya pay for community supports and services to make his transition back into his family and community successful?

A shocking contrast

I received Mr. Wakem’s email the same day as reports of Cardinal Innovations Healthcare’s (another LME/MCO) half-million-dollar settlement with former CEO, Richard Topping, and the contrast in these two situations struck hard. According to media reports, Cardinal fired Topping in 2017 after a damning audit revealed that Cardinal paid him millions while denying services to people who needed them. Reports at the time said that Cardinal used Medicaid dollars to expand its business portfolio, buy cars, hold lavish parties, travel, and give huge bonuses to top executives totaling $4.3 million over two years. While CEOs of LME/MCO’s are supposed to make a maximum of $204,195 annually, Topping’s salary was reportedly over $600,000 a year.

No one required Topping to pay back the money. Instead, he left Cardinal with a $1.7 million severance package. Cardinal later filed a lawsuit against Topping to recover the funds and Topping counter-sued for defamation. This ongoing litigation ended when a settlement agreement was reached earlier this month, Cardinal offering half a million dollars to the ousted CEO. The settlement came on the day Cardinal closed its doors, following years of high-profile reports detailing Cardinal’s notorious failure to provide for the children with disabilities it was supposed to serve.

DHHS must hold LME/MCOs accountable

While it is coincidental that Mr. Wakem’s email and the news of Topping’s payout appeared the same day, the contrast is a gut-punch. The state makes it easy for Cardinal to pay out millions of dollars of public funds and easy for Vaya to refuse to use public funds for their allocated purpose: to provide a disabled child with medically necessary care.

Meanwhile, the Wakems and other families must continue to endure their daily nightmares of watching their children suffer, truly suffer, without treatment while knowing that these legally mandated services could be provided if DHHS made LME/MCOs live up to their contracts, and do the urgent, important work they exist to perform.

Mr. Wakem hopes that his family’s story will raise awareness and serve as a wake-up call.

MCOs must be accountable to the state for the millions of dollars of public funds they manage. No parent should have to consider giving up their child to get a response to their cries for help. It is time for all of us to demand that DHHS hold LME/MCOs like Vaya accountable for making services available. North Carolina has a responsibility to its children with disabilities. Their very lives hang in the balance.

Jill Sirko is the Communications Coordinator for Disability Rights NC.