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I spent far too long contemplating how to begin this conversation, and in doing so, I realized that my hesitation stemmed from an overwhelming sense of helplessness. That feeling can quickly spiral into hopelessness, leaving families feeling trapped and unsure of how to navigate their challenges.
Let me start with a question: What do families do when their child has multiple disabilities, including behaviors that lead to violent outbursts? Outbursts that pose safety concerns for everyone living under the same roof? This question remains unanswered for many families, often leaving them stranded in a sea of uncertainty. What happens when you don’t have the answers? The answer is simple: you endure. But enduring such a situation is debilitating, often leading to emotional and physical exhaustion.
Consider one family whose son exhibited challenging behaviors starting at the age of 9. Now 14, their journey has brought more loss than gain. I want to be clear: I do not fault the resources available to support families in crisis. I cannot pinpoint a specific failure in the system that prevents adequate care and treatment for children with complex disabilities. Instead, I can only share their stories.
Typically, families facing these challenges advocate fiercely for their child. They begin by seeking therapy and collaborating with the child’s school to ensure proper support is in place, such as a 504 plan or an Individualized Education Plan (IEP). They request tools to help manage behaviors at home and work to establish a medication regimen to help control their child’s strong urges. Yet, the effectiveness of these approaches often ebbs and flows, making it difficult to sustain progress.
One of the significant challenges families encounter is navigating the legal framework surrounding mental health treatment. Under Washington state law (RCW 71.34.030), children aged 13 and older have the legal right to deny therapy. While this law is aimed at empowering children and ensuring they have a say in their treatment, it can leave parents feeling powerless. For some families, this framework may not fit their unique situation. Many parents are left to wonder: Is it possible for this consent law to be more individualized, allowing for greater flexibility based on a child's specific needs and circumstances?
This legal right can lead to situations where children refuse the very help they need, exacerbating their struggles and placing additional stress on the family. For example, when a child is in crisis, the inability of parents to compel their child to seek treatment can feel like a betrayal of their duty to protect and support them. The emotional toll on families can be immense, as they grapple with feelings of hopelessness and frustration while watching their child spiral further into distress.
One family shared a harrowing experience that exemplifies the systemic failures at play. Their son, struggling with his mental health, ran away from home for the third time in a week, refusing to take his medication. When the police found the child, he was armed with a machete and threatened to kill his mother. The officers informed her that they would bring him home, but she firmly refused, fearing for her safety. Instead, they took him to the hospital, where the family sought mental health support, specifically residential treatment, due to the escalating nature of his behavior.
However, the challenges did not end there. In Washington state, hospitals often lack the capacity to handle acute mental health crises effectively. Many facilities are ill-equipped to provide the specialized care that children in crisis require, leading to inadequate treatment options. When families arrive seeking help, they often find themselves in a system that is overwhelmed and under-resourced.
Finding an appropriate bed for this child proved nearly impossible. Every facility that the mother contacted turned him away due to his violent behavior and the risk of elopement. Moreover, hospitals frequently struggle with staffing shortages and insufficient training in dealing with severe mental health issues, which further hampers their ability to respond effectively to crises. This lack of capacity not only affects the quality of care but also contributes to an environment where families feel dismissed or judged rather than supported.
In a shocking turn, the hospital even called Child Protective Services (CPS) on the mother, accusing her of abandoning her son. To CPS's credit, they recognized the mother’s dedication and advocated for her, as she was actively working with the Division of Children, Youth, and Families (DCYF).
Despite her daily check-ins with the hospital and DCYF and her relentless efforts to find suitable care for her son, the options remained bleak. The hospital staff subjected her to constant scrutiny, often implying that she had failed in her parental duties. Families frequently encounter skepticism from medical professionals, who may not fully understand the complexities of their child’s condition or the depth of the family’s struggle. This dynamic can create additional barriers to care, as families are often left feeling judged rather than supported.
Ultimately, in an act of desperation, the mother decided to send her son out of state to Utah for treatment, paying out of pocket for the care he desperately needed. Ironically, once she made this sacrifice, the hospital declared her a "good mom" who clearly cares for her son.
Now, let’s consider the perspective of the child in this scenario. For him, the world feels chaotic and overwhelming. He may struggle to articulate his feelings, viewing therapy as an intrusion rather than a support. Under the current law, his ability to deny therapy leaves him feeling even more isolated and misunderstood. What does he want? Perhaps he craves connection, understanding, and a sense of agency in his treatment. This yearning is often overshadowed by the spiraling chaos of his behavior and the fear and frustration it brings to his family.
In this context, it’s crucial to acknowledge the tireless work of mental health professionals in Washington State. These dedicated individuals are not the problem; rather, they are often the beacon of hope for families navigating these turbulent waters. Their compassion and commitment to helping children and families in crisis can make all the difference, even when the system itself is lacking. Despite the constraints and challenges they face, their kindness and understanding provide essential support and reassurance to families who feel lost and overwhelmed.
Fortunately, there are existing resources in Washington that could be leveraged to create a more supportive environment for families. Community mental health programs, peer support networks, and family advocacy organizations can provide critical assistance in navigating these challenging waters. How can we better integrate these resources to create a more cohesive support system that acknowledges the complexities of each child’s needs?
As we reflect on these pressing issues, we must ask ourselves: How can we work together to repair what is broken without dismantling the systems that do provide support? How can we ensure that access to mental health services is equitable for all families, regardless of their circumstances? Is it possible to develop a more individualized approach to consent and treatment that respects the rights of children while also addressing the needs of families in crisis?
How many more families must endure this pain before change occurs? What will it take for our system to prioritize the well-being of our most vulnerable children?
These questions linger, demanding our attention and action. It is time to come together, listen to the voices of families and children, and find solutions that bridge the gaps in our current system.
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As a dedicated advocate for families and children with disabilities, Courtney Williams is deeply committed to fostering success and wellbeing within our communities. With a heartfelt mission to unite families and enhance the quality of life for children facing challenges, she strives to create inclusive environments where every child can thrive. As a proud mom of two, she understands the joys and struggles of parenting, which fuels her passion for building supportive networks that empower families.
