Staff Post:
Joonu Coste, attorney

A missed diagnosis, system failures cause years of suffering

This is the story of Jenny, who as a precious infant was taken away from her birth mother when child welfare workers learned her mother was putting vodka in her baby bottle to get her to sleep. This is also the story of Jenny’s adoptive parents, Sarah and Bill, who quickly took Jenny in and have fiercely loved her as their own ever since.

For more than a decade, Jenny has cycled in and out of psychiatric hospitalizations, failed or non-existent community treatments, and experienced anxiety, trauma, and a significant missed diagnosis of Fetal Alcohol Spectrum Disorder (FASD) that, had it come earlier in Jenny’s life, might have put this family in a different place today.

Now at age 15, Jenny and her parents have been through more trials and tribulations than many families face in a lifetime. Theirs is a story of perseverance, endurance, and survival in the face of suffering. More importantly, it is the story of the fear and shame cruelly caused by North Carolina’s failure to provide effective and appropriate community-based mental health services for children.

Breaking the shame and stigma around mental health disabilities in children

For many years, Sarah and Bill were afraid to share their trials with others. They feared people would not understand, that they would be judged as bad parents – or worse, that Jenny would be judged a “bad kid.” They feared she’d end up criminalized for behaviors she couldn’t control. They feared she would be institutionalized where she could be abused while locked away from their protection. They feared that she would be taken away from them by social services. They feared they would never get the help they needed. They felt the crushing weight of stigma and stayed silent.

But another round of recent hospitalizations and crises changed and mobilized them. Their experience awakened their voices and gave them strength to speak out. As Sarah said recently, “I don’t want any parent going through this, knowing their kiddo needs help and can’t get it.”

There is power in speaking truth. It disarms shame and stigma. It is time to speak truth about the thousands of children in NC with mental health disabilities who we still hide away.

Jenny, Sarah and Bill agreed to share their stories as part of DRNC’s Bring NC Kids Home campaign. A couple of months ago I briefly introduced their story, promising more to come, in a blog entitled, “Let’s Break the Silence.”

This is the rest of their story.

Jenny’s story

As a young child, Sarah and Bill describe, Jenny was beautiful and energetic. But things were difficult early on. She was kicked out of preschool due to behaviors. She had an Individualized Education Program (IEP) by first grade. She struggled with impulse control.

One time, on impulse, Jenny stole a teacher’s mobile phone. They discovered she had the phone when she answered a call made to the teacher. Another time she snipped a lock of hair off her teacher’s head. When asked why, she stated that the hair was so pretty she wanted to put it on her own head. The impulses were never malicious, but they were vexing nonetheless. Jenny did not get enough support from the school. The teachers didn’t know how to work with her. So, the challenging behaviors continued, despite how deeply Sarah and Bill loved and supported her.

As Bill stated, “We thought love could heal her.”

When love is not enough

Jenny had an adoption-competent and trauma-trained therapist who offered post-adoption support services. But over time, Jenny’s impulsivity turned aggressive and violent. It was almost always directed toward Sarah. Eventually, Jenny was diagnosed with reactive attachment disorder (RAD), a condition in which a child doesn’t establish a healthy attachment to her parents.

At this time, no one thought to test Jenny for FASD. This oversight had devastating consequences.

FASD is a disorder characterized by physical, mental health, intellectual and learning disabilities, many of which Jenny was experiencing. FASD occurs when a fetus is exposed to alcohol during pregnancy. Jenny was fed alcohol directly – this was a known part of her social and medical history.

Think about that. Providers knew that Jenny’s developing newborn brain was repeatedly exposed to high levels of alcohol, which leads to significant brain damage in fetuses and infants, and no one suggested that Jenny should get tested for FASD.

There is no cure for FASD. But research shows that early intervention can significantly improve a child’s development. In fact, getting a diagnosis before the age of 6 is considered one of the primary protective factors that greatly reduce the long-term effects of FASDs so the child can reach her full potential. In many states, a diagnosis of FASD automatically qualifies a child for early intervention services.

Jenny never got that chance.

Clinicians focused on Jenny’s behavior through a conduct-disorder lens rather than looking at the whole picture. Because of this serious oversight, Jenny didn’t get the treatment she needed. Instead, Jenny was blamed for behaviors that were the result of her disability.

A decade of treatment missed. A decade of trauma and heartache that was avoidable.

As Jenny grew older, Sarah and Bill no longer felt safe in their own home. Several crisis plans were put in place, but Jenny was increasingly unpredictable. Nothing was helping Jenny.

Managed care organizations in NC and institutionalization

The organization that manages Jenny’s care and pays for it, Vaya Health, has been a significant force in Jenny’s life. Vaya is the gatekeeper to all services. They have the power to approve or deny the help Jenny needs. Vaya gets its funding from the NC Department of Health and Human Services (NC DHHS), which gives Vaya and the state’s six other Local Management Entities/Managed Care Organizations (LME/MCOs) a specific amount of money for each person in the area they serve. Vaya serves 22 counties

Significantly, LME/MCOs in North Carolina get to keep any money they do not spend on services. That is a powerful incentive to cut costs, and they cut costs by denying services. Across the state, these seven LME/MCOs hold hundreds of millions of dollars in reserves, money that could help people like Jenny thrive in their communities. This system makes it hard for kids to obtain the supports and services they need in their own communities and pushes them into institutions.

Earlier this year, Jenny’s long-time therapist wrote Vaya with the recommendation that Jenny be sent to a group home:

Jenny has participated in intensive in-home services, day treatment and short term hospitalizations that have not been successful in improving the situation in the home long term. The family needs the respite support as well as Jenny needs to find a level of care that she can learn from and be reunified with her family with skills and relationship in place to move forward. . . . My professional recommendation in having worked with the family extensively is to address the needs with a level 3 placement as soon as one can be found that is appropriate to meet Jenny’s needs.

It broke Sarah and Bill’s hearts to think of sending Jenny away. They loved their daughter. They wanted her to stay at home. However, with no other effective community-based treatment options available, and no respite providers available to give then a break, Sarah and Bill felt defeated. They had a decade of failed attempts behind them and Vaya gave no other options. And Vaya did not give them an option for a group home, despite the recommendation.

Without an accurate diagnosis or appropriate services to help her, Jenny’s behavior was increasingly dangerous. Eventually Sarah and Bill found themselves sleeping with their dresser in front of their bedroom door at night and hiding or locking up anything they thought Jenny might use to hurt herself or someone else. They put video surveillance cameras throughout their home. Jenny required round-the-clock supervision.

Jenny was turning 15 when Sarah and Bill began contemplating the unthinkable. They had heard of “failed adoptions.” They knew of devastated families who felt they had no choice but to relinquish their children back to the county social services because their families couldn’t meet their needs. Sarah said she and Bill asked themselves, “Are we going to have to give her up in order for her to get help?”

This is the unimaginable position some families are put in because of NC’s failure to provide a necessary array of appropriate community-based mental health services. What parents don’t know is that county social services are not able to access this elusive help either. The lack of appropriate and necessary community-based services confounds local DSS agencies too.

Need for community-based services

But then, unexpectedly, things slowly started to turn around. The work with their in-home team finally began to bear fruit. They finally found a clinician who “got” Jenny. He recognized her “Jennyisms” and was able to connect with her. He was able to help Sarah and Bill reengage with Jenny and each other. The family began to function better.

By June, Jenny had not been hospitalized in seven months. She was making progress in her studies. Her relationship with Sarah was shifting in a positive direction. The reactive aggression and violence diminished. She was beginning to make vital connections between her actions and consequences. She was beginning to accept consequences for her actions.

In July, Vaya decided it was time to transition her to new services.

Despite grave reservations expressed by Sarah, Bill, and Jenny’s primary clinician, Vaya pushed ahead with the transition. The plan, they revealed at the monthly team meeting, was for Jenny to leave the day service program and enroll in public high school at about the same time the in-home clinical team would discharge her. A new group of support specialists and clinicians would be brought on board.

Not surprisingly, this was too much change all at once for Jenny. In her eyes, the reward for her hard-won progress was to have the one clinician who had ever understood her – one of the only people to ever truly see her – taken away along with all her friends and teachers at the day program.

A week later, Jenny was hospitalized. And so began months of trauma and injuries as Jenny was sent from involuntary commitment to a group home without the supports she desperately needed. While there, she was attacked by another resident, leading to head trauma and a visit to the emergency room, the director of the program threatening Jenny’s parents with sending her to a more restrictive residential facility, and Jenny calling home, scared for her safety.

These events took place in a “therapeutic” setting, in a place where Jenny was supposed to receive intensive treatment. Yet, Bill and Sarah felt they had no choice but to bring Jenny home again, even though she had no providers there to support her. Her prior team had been disbanded while she was at the group home.

Sarah said Jenny was uncharacteristically quiet and withdrawn once she got back home. “Jenny is shell-shocked,” she told me. Jenny was direct about her time at the group home:  “I don’t want anyone to live like that there.” (The family did report Jenny’s experience to Vaya, and NC’s licensure and regulatory agency, the Division of Health Service Regulation, substantiated significant failures during Jenny’s brief stay there, such as failing to have appropriately trained staff, failing to report incidents to the state, and failing to conduct criminal and other background checks on staff before hiring them.)

Jenny’s parents begged Vaya for a therapist to help Jenny process the group home trauma, but Vaya told the family there was no one who could help them at that time. After a week home with no mental health support, Jenny was hospitalized again for several days due to threats to harm herself and her parents.

A failed system

This is where the momentum of the system commonly accelerates a child toward placement in expensive, ineffective institutions called Psychiatric Residential Treatment Facilities (PRTFs), where they are often abused, neglected and traumatized. A clinician states that the child is in need of “a higher level of care” and the search is on for institutionalization.

Increased level of care is not the same thing as a more restricted environment.

These so-called therapeutic settings often lead to more trauma. Yet, without community supports, parents and caregivers often have no choice but to send their child to one of these facilities.

Sarah and Bill are not alone in this experience. On any given day in NC, hundreds of families and caregivers try to navigate NC’s complex web of bureaucracy, hoping to keep a beloved child in the community where they are valued and loved and given the services they need to thrive. Some succeed. But many do not. Many kids wind up in PRTFs.

Disability Rights North Carolina (DRNC) staff regularly see these kids. We represent them in PRTFs and in the community, where their caregivers are fighting to keep them at home. We see the brutality of these systems, and despite years of strong legal advocacy at the local and state levels, we have not seen meaningful change.

With an accurate diagnosis, Jenny’s future looks brighter

Stories like Jenny’s shine a light on these failures. We have an obligation to protect these kids and support them in their home communities. Shipping kids off to profit-making facilities where their individual needs are not identified or met is no answer. It is very expensive, and it is not working. We cannot ignore their plight. We cannot continue to look the other way.

Sarah and Bill are determined to keep Jenny at home. With my support, they made the case that she could be accommodated and treated at home. She had been, after all, for seven months. It had not been easy, but it was working.

Thankfully, Jenny was finally diagnosed with FASD at this time.

Jenny’s new plans revolve around services informed by an expert in FASD. NC has very few professionals trained to work with individuals with FASD. I am helping Vaya identify experts who can assist the family. This week, Vaya approved respite services to give Sarah and Bill necessary breaks, as well additional assessments for Jenny.  And Vaya will pay for training in FASD for Jenny’s current treatment team.

Jenny’s family is grateful for this diagnosis and determined to learn as much as they can about FASD. They plan to advocate for legislation for more funding for services and more research, and to educate others about life with RAD and FASD. They are learning to embrace a new context for Jenny and their family based on accommodating the very real physical disability that Jenny has in her brain, as well as supporting her mental health needs.

When LME/MCOs like Vaya function as they are supposed to, there is real opportunity for kids to thrive. Too often, unfortunately, they are reactive rather than proactive.

My hope is that this will become testimony for the importance of screening for FASD and understanding the success that is possible by providing FASD-informed services. In the meantime, Jenny, Sarah and Bill have to recover from the years of turmoil and trauma they experienced. And hundreds of other children and their families and caregivers continue to endure NC’s unacceptable, failed community mental health system.

This must change.

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