Tuesday, December 18, 2012

How many more children have to die?

As a child psychiatrist and parent, I regard the Newtown horrific mass murder of elementary age children as a final wake up call so that we will never again ask, “How many more children have to die?” Nothing can justify this preventable tragedy to the parents and families of their murdered beloved ones. The time has come to halt the unrelentless chipping away of our mental health care services and quality of care for mental illness, to educate the community about severe mental illness, and to implement strict controls on access to firearms.
Dr. Rochelle Caplan, UCLA Professor Emeritus of Psychiatry and past Director the UCLA Pediatric Neuropsychiatry Program 

This is an excerpt from an excellent article in The Oxford University Press's blog Academic Insights for the Thinking World, titled How many more children have to die? and written by my friend and colleague, Dr. Rochelle Caplan (although calling her a colleague is a bit laughable, given how distinguished she is!). In addition to her title above, Dr. Caplan studies thinking and behavior in pediatric neurobehavioral disorders (schizophrenia, epilepsy, attention-deficit hyperactivity disorder, high functioning autism) and related brain structure and function; unmet mental health need in pediatric epilepsy; and pediatric non-epileptic seizures.

I met Dr. Caplan many years ago when I first began working in healthcare as a parent co-chair of a national collaborative that worked to improve the quality of and access to healthcare for children with special healthcare needs, specifically epilepsy. I can still remember the talk that she gave at a plenary session during one of our large collaborative meetings, when nearly a hundred professionals -- neurologists, pediatricians, hospital administrators, family leaders, social workers and community and government officials -- gathered together to solve some of the most intractable problems that children with epilepsy and their families face. During that talk, Rochelle spelled out some grim statistics about the effects of epilepsy on mothers and siblings of children with seizures, statistics that were at once alarming to me and affirming, albeit in a strange way. I remember having to take a break from the subsequent meetings at the conference so I could go upstairs to my hotel room, where I lay on my back staring at the ceiling, absorbing the fact that yes, what I was doing was incredibly difficult and traumatic. I wasn't not coping but rather doing something very, very difficult. That acknowledgement, coupled with the statistics, was enormously helpful to me in countless ways, including psychic, and I was fortunate to become friends with the doctor as we lived not far from one another in Los Angeles.

I recently saw Rochelle again after a period of a few years, and we had the chance to catch up -- both personally and professionally, when I learned that she had just co-authored a book titled "How Many More Questions: Techniques for Clinical Interviews for Young, Medically Ill Children." I so look forward to reading her book but was very impressed by her impassioned plea following the massacre in Connecticut and spelled out in the linked article.

Please feel free to spread this article around, and I look forward to a great discussion here.


  1. Every day of my life I think of you, Elizabeth, and I think of the way you are changing this world.
    You may not think of yourself in this way, but it is how I think of you. And I believe I am right. Your dedication, your devotion, your continual doing of that which is very, very difficult, your ability to speak of all of it in such a straightforward loving way- all of these things send tendrils of a sort of rightness out into the universe.
    I'm sorry. I can't quite put into words how I am feeling. But perhaps you can catch what I mean. I hope so. Because you need to know that what you do is so very, very important.

  2. what ms moon said.

  3. Ms Moon is so right. You have an impact on me and I am so many thousands of miles away. I support you in my thoughts, which is kind of useless but all I can do. If there was anything I could do I would. I cannot do anything directly for you so instead I have learnt to see the children, the parents around me and look past the wheel chair and smile, directly, into their eyes. I have learnt from you that that can change a day, so I do. I hope you see that you are changing the world.

  4. What a fabulous article, Bravo!

    These are important discussions, I believe it is also important, not only to identify the individuals who suffer from mental illness, but to find a supportive place for them as well.

    Right now their only choices are mental institutions or prisons.

    In many of these mass shootings, the killers have been young men in their 20's who are now out of high school where they were most likely bullied and mistreated. The logical next step for most young men is college. But here, most institutions lack the proper support services these men need to be successful. Social difficulties and impulsivity make it difficult for these young men to hold down a job.

    With no where to go, these individuals often remain at home with no job, school or friends and caregivers who are often overwhelmed and struggling with their own mental health issues, furthering the feelings of isolation and resentment in both parent and child.

    We have a long way to go in supporting these individual and the families who care for them.

  5. As someone who used to work for the state mental health division, I can attest to the fact that there is a special set of problems that come with children who are mentally ill. (I worked in the children's division of the mental health services). There is so much potential for helping early on if we allocate the resources and reach out to the families early enough, but it doesn't happen anymore because budgets have been slashed for anything that isn't covered by an insurance company (ie. a doctor's visit). Social workers and caseworkers and casual check-ins with family and teachers who might alert us to small issues are not 'covered' and thus, they don't happen.

    Additionally, there is such a stigma associated with a parent choosing to remove their child from the home, either to a short-term treatment facility or a group home, that many simply suffer in silence until it's too late and the state steps in to do it for them or tragedy strikes or the child runs away.

    Another tragic issue is the strict delineation between funds allocated for "child" versus "adult" services which means that mentally ill teens are ticking time bombs. The child system can't "fix" them before they turn 18 and often choose to spend their limited resources on younger kids they might better serve, and the adult system doesn't want them yet because they're not 18. There is a period of a few years in there that are lost for these kids and, not insignificantly, these are the most difficult years with respect to hormones and relationships and responsibilities for both the kid and the family. I can't tell you how many times I watched helplessly as a kid "aged out" of the kid system only to end up in jail for a petty crime within months of turning 18. We really need to take a hard look at the way we serve people with mental illness in this country.

  6. thank you for being who you are. you open eyes.
    i adore you!!!

  7. Elizabeth, your reflections on your experiences as a mother of a special needs child while maintaining a positive approach to your other children and everything around you in the physical and spiritual world are truly wonderful gifts. Modeling this through your blog is most helpful to other parents as evident from their comments on your blog. Although my post on the Newtown massacre emphasized the lack of mental health care for children with mental illness and their families, the same can be said about the need to address the mental health burden of having any special needs child. In this context, support by parent advocates like you through blogs, support groups, and social media, is an invaluable spark of light.



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