Let's Break the Silence

Staff Post:
Joonu Coste
Equal Justice Works Fellow (sponsored by an anonymous donor)

Confronting the stigma around children’s mental health disabilities

After my first year of law school, I interned at Disability Rights North Carolina (DRNC) and worked on a project involving children in residential mental health treatment. I was shocked to find out that children – often poor and/or children of color – are sent away to live for months, even years, in sterile, cold, impersonal and locked institutions called Psychiatric Residential Treatment Facilities (PRTFs). Kids as young as 5 years old. I thought that we, as a society, had stopped doing that. I was wrong.

In American culture, we stigmatize children with mental health disabilities and shame their families. The silence around this issue – in families, in society – signals the shame of that stigma turned inward.

It is time to break that silence.

My story

When my child was three years old, my husband and I had a parenting crisis. We tried everything but no matter what we did, our daughter did not sleep. Ever. She suffered multiple emotional meltdowns daily. She was miserable. She never smiled or laughed. Our household was constant chaos. Our family was breaking. Fortunately, a friend suggested a therapist and urged us to pay her a visit. The day our child was diagnosed with autism, anxiety disorder, and a sleep disorder, my world began to come into focus.

After giving us the diagnoses, the therapist gently asked how my husband and I felt. I felt relief. “I have read every book on parenting out there, tried everything, and nothing has helped,” I replied. I felt I had failed my child. She calmly looked me in the eye and stated, “That is because those books are not written for your child.”

It was the most reassuring statement I had heard in many years. It offered hope that we could find another way. There was nothing wrong. We shifted our expectations. We needed new strategies and we needed community. About six weeks later, my second child was diagnosed with autism, attention deficit hyperactivity disorder (ADHD), anxiety disorder, dysgraphia, and dyspraxia.

My family has been fortunate. We live in the Triangle. We are a 2-parent household. I was full-time at home with the kids at the beginning. We have excellent private health insurance. It was possible to find community-based services to support their diagnoses. The kids were available for appointments during school hours because we homeschooled, allowing us to sidestep extremely long wait lists. We had transportation so I could drive hours every day to providers. I piled the kids into our adolescent-aged minivan and drove hundreds of miles every week, sometimes up to 3 appointments with therapists daily. It took all our resources, but it was worth it. Our children got what they needed. Change came slowly but it came. At age four my daughter slept through the night for the first time. Ever.

What is true for our experience is also true for other families whose children have behavioral health disabilities. Parenting books aren’t written for their children either. They are bewildered and overwhelmed. They too need new strategies and support so that their children can thrive. They too need access to services and community. The huge difference is that – for structural and systemic reasons – the community-based services and supports that became my family’s lifeline are unavailable for these families.

A new understanding of disability

Our culture generally views disability as abnormal and a social burden. This approach leads society to focus on treatment and cure of the individual. Inclusion of people with disabilities then becomes a private responsibility, which justifies limited state intervention.

Additionally, our culture stigmatizes mental health disabilities. While many oppressed groups have made gains toward equality in society over the last few decades, when their identities are tied to a mental health disability, discrimination is cemented.

We can change this.

It begins with understanding disability differently, as being caused by how our society is organized. This understanding leads to a different approach, concerned with how a person is supported, and what systems and factors need to change. We can identify and address obstacles that effectively dis-able people in certain contexts. This approach locates disability outside of an individual. It recognizes disability as difference and holds inclusion as a public responsibility.

Not everyone understands. Not everyone accepts. There are always bullies and naysayers. Still, we all have every right to be here and to take up space; to live unapologetically and unashamedly. What I know to be true is when you live your life in truth you attract others and give them permission to do the same.

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.

The false choice

When I visit PRTFs across the state, I regularly meet children and families who are being traumatized by the State’s failure to ensure necessary and appropriate behavioral health care is available to all of NC’s children who need it, regardless of financial resources. Under the law, these services must be provided in the community if at all possible. Yet these services are difficult to find and, in some places, non-existent. For some NC children and their guardians, the lack of community-based services creates a false choice between no treatment or institutional treatment.

Until there is no choice. Until there is a crisis.

Then children are locked away from their families and communities, where they are vulnerable to abuse, neglect, and exploitation in distant PRTFs – many of which have well-documented histories of such violations. Even more tragic, many children are sent out of state – as far away as Arkansas and beyond. Removed from their loved ones and communities, they are further unprotected from abuse, neglect and exploitation.

Too many children in these circumstances spend their formative years cycling in and out of failed treatment in these institutions, separated from their loved ones and communities, losing hope.

Sadly, stigma shames many survivors, families, and communities into silence about their experiences, creating the false impression that the need for community supports isn’t as great as it truly is.

Let’s break the silence

We can change this. We can break the silence. We can speak truth about what these kids need to thrive. We can speak the truth of our experiences. We can advance an alternate vision where all children, families, and communities have access to the mental health services they need in their own communities. We can demand the State of North Carolina fulfill its obligations under the law and ensure people with disabilities can access the services they need to maximize their quality of life.

We can start today.

In this next section, we share a brief introduction to two families and children who have experienced stigma, shame and extreme obstacles in obtaining the care they need to thrive and remain in their communities. Over the next few weeks, as part of our special series on PRTFs, we will share more detailed information about their experiences – their truths – to help break this silence and confront stigma. We hope their stories will inspire others to come forward, to share their own stories of situations that are impossible, not because of the diagnosis or the child, but because of the state’s failure to prioritize community-based services. We hope you will join us in this effort.

Jenny’s* story

Sarah and Bill Nelson have tried everything they can think of to help their teenage daughter, Jenny, whom they adopted shortly after her birth. Jenny is diagnosed with Fetal Alcohol Spectrum Disorder (a developmental disability) and Reactive Attachment Disorder (a mental health disability), but cannot get the help she needs, forcing her parents to consider an unbearable choice.

Their story began when Sarah met Jenny’s visibly pregnant biological mother, who was begging for money on the side of the road. Sarah helped the mother-to-be that day and left her contact information with her. As she left the woman’s campsite, Sarah told her that she would pray for her and her unborn baby. A few weeks later, the local Department of Social Services called Sarah. There was a newborn girl who needed a home, and the mother had asked the agency to call Sarah.

Sarah and Bill took the baby in and have loved her as their own ever since. Their deep love and financial resources, however, have not been able to help Jenny. As 2021 rolled in, they were confronted with the unthinkable decision – was the best thing for Jenny to dissolve the adoption, give her back to the DSS agency? Would DSS be able to get her the help for her disabilities they could not?

Lilly’s story

Deborah has a master’s degree and has worked as a special education teacher and an investigator for child welfare agencies. She and her husband David have three children. Their oldest, Lilly, has been in and out of institutions and group homes since 2019, after she attempted suicide. This suicide attempt was the culmination of many years of inadequate, unsuccessful therapy and treatment for her volatile mental states.

Lilly has been to nine residential placements across three states in the last three years. She suffered abuse and/or neglect at almost every placement. After the abuse at the last placement, Deborah and David brought her back home and tried to get services in place for her. While waiting for those to begin, Lilly decompensated. Three turbulent years and trauma culminated in a crisis and detachment from reality, sending her to an emergency department, where she now awaits yet another residential placement. Deborah is devastated that given her experience and education, she can’t get the help her daughter desperately needs.

Let’s Break the Silence