ellen_lawton
Ellen Lawton
National Center for Medical-Legal Partnership, Department of Health Policy, George Washington University
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Child Advocacy: Mental Health

There is a universal recognition that all parents need to advocate for their children, and that families of special needs children need to advocate in spades. Some parents are better prepared than others—emotionally, professionally, spiritually—to advocate for their kids. Yet many of us find the complex work of advocacy overwhelming, whether because we are disabled ourselves, or poor, or can’t speak English, or lack skills needed to secure the right supports and services. Such families frequently end up at the mercy of healthcare and educational and government systems. Even with a plethora of helpers in the form of case workers, nurses, social workers, attorneys—you name it—the parent of a child in a mental health crisis resides in a deeply lonely place.

As an attorney with experience in the field of child advocacy, I understand well the dire need for parents to understand and navigate the complex bureaucracies and systems that govern services for children and families. I spent a decade in a pediatric legal program serving low-income families, many of whom had children with special healthcare needs. I felt pretty attuned to the challenges faced by my clients—and routinely counseled clients on how to be more effective advocates. I also coached them on the basics: (1) keep copies of all documents; (2) always communicate in writing;  (3) keep track of each person you speak with, including their title and contact information; (4) and pay attention to deadlines and appointments. I counseled clients to have patience with the process but to use firm, polite, regular inquiries regarding the status of a report, an evaluation, or a decision—and to follow up with firm, polite emails requesting action.

As the mother of a son with special needs, I understand just how taxing advocacy can feel for parents. But when my son’s severe ADHD morphed into a mood disorder, I found myself catapulted into the depths of the mental health system—and got a whole new perspective on what parent advocacy takes. Making matters more complex was the lack of clarity around my son’s condition. Diagnosed with a mood disorder “NOS,” meaning “not otherwise specified” (or “we just don’t know”) in the medical world, my son was handed an ambiguous card. And our family faced the challenge of carving out a supportive path.

Between my professional experience as an attorney, and my journey with my son, I’ve learned a lot about mental health services in the U.S.. For one, pediatric mental health facilities are a unique, non-intuitive ecosystem within the healthcare landscape. The scarcity and uneven quality of the resources demand insider knowledge at almost every turn, regular leaps of faith despite contrary indicators and a wholesale release of expectations regarding how the universe—and the healthcare system—should respond to a mentally-ill 9-year-old. From this soul-changing experience, I grabbed on to a few core truths and hung on for dear life:

(1)   Hold conference calls for all providers. Your most important task as a parent-advocate is to get all parties to speak together regularly. Why? Because the key players likely work at different institutions (hospital, outpatient facility, school, community mental health program), perform different roles (psychiatrist, therapist, teacher, social worker), have different opinions and use different terminology to describe problems, behaviors and therapeutic approaches. Yet all of their perspectives are essential to setting the path forward for your child.

Setting the expectation of a joint conference call to discuss your child’s diagnosis, prognosis and treatment should be a basic care coordination strategy. Sadly, however, conference calls and other readily available technologies are under-utilized. Some states, like Massachusetts, incorporate these types of expectations into their care coordination guidelines. But ultimately it’s the parent-advocate who makes this happen—or not.

(2)   Talk to the insurance provider. All healthcare facilities battle with insurance companies seeking coverage for recommended care and treatment. However, some facilities, certain providers and some case managers are better at it than others—and have ninja strategies honed over time to get coverage for critical services. Find the good ones and collect them like precious gems.

Generally, hearing directly from an articulate parent can put a human face on an otherwise bureaucratic decision. Persistence beats resistance. And while these conversations are not for the faint of heart, they are a key strategy to keep in mind.

(3)   Protect against the isolation. Studies have long confirmed that peer support for parents of children with special needs can lower anxiety, boost stress tolerance and increase overall parenting confidence. And just as parents of children with food allergies benefit from strong support systems, parents of children with mental health problems—especially aggressive children who are ostracized by their peers—can benefit from connecting with others who can share tips, keep a watchful eye and simply empathize and relate.

And yet, as many of us know, connecting with other parents of mentally-ill children carries its own challenges, including comparisons (“your child is doing “better” than mine”) and judgments (“we don’t believe in using that kind of medication/treatment/strategy”). I was devastated the day a close friend said sympathetically, “If your son had cancer, people would bring you casseroles, but because it’s mental illness, they stop calling.”

The truth is, with some exceptions, my friend was right. Maintaining compassion for my challenging child—and fostering compassion in others—was a Jedi mind trick I learned over time, that was helped along when I began to see my son’s mental illness as an emotional wheelchair. We lived a reality we could not control—and came to realize it deserved accommodation, compassion and flexibility not just from family but also from our healthcare team, school and community. My son needs a robust, flexible and compassionate support system to succeed and thrive.

In the end, my legal skills help me navigate the complexities of our healthcare system and secure services for my son. Ultimately, though, my secret weapon is gratitude—and my belief that however challenging my family situation, there is always a bright side to be found.

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Learn More 

“Families of Children with Medically Complex Conditions Hit Capitol Hill to Address Medicaid’s Role in Child Health,” (press release), Speak Now Kids Family Advocacy Day, 2013

“Strategies to Support the Integration of Mental Health into Pediatric Primary Care,” National Institute for Health Care Management, 2009

“Curing the Healthcare Crisis: Empowering the Patients and Caregivers,” John C. Goodman, Ph.D., Psychology Today, 2013

“When a Child Has a Mental Illness,” Lisa Belkin, Motherlode (The New York Times), 2009

“To Parents of Children with Special Needs: Take Care of Yourself, Too,” Judy Winter, EduGuide

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