Although much of my patient advocacy work is with CF on behalf of Bennett, this particular forum was focused on mental health and, so my work focused more on Oliver's part of our CF journey.
Along with several other parents who shared their children's stories of mental health, I helped open the symposium by sharing with a room full 50+ various pediatric mental health experts Oliver's young struggles with anxiety as a sibling of a person with cystic fibrosis. The goal of our two-day work was to develop action items and recommendations for improving the training of the future workforce in child mental health care.
I found the conference to be really fascinating and couldn't help but think of many other families like mine would have loved to have been there listening to the current state of the pediatric mental health care system and ways currently being suggested to improve the system for all children.
My goal in sharing both boys' story, but especially Oliver's, in this forum was to bring a human element to a room of brilliant minds (pediatricians, psychologists, researchers, innovators, policy-makers, etc.) working on behalf of kids.
|Oliver, age 2|
After I shared Oliver's story, I implored the group that sat before me to remember "the Olivers"...all of the siblings of children in the system. I implored the group to recognize that anxiety and depression is high in chronic disease communities, like CF, for those with chronic disease, but rates are even higher for siblings...and even higher still for caregivers. And I implored the group to remember that "one more thing" for a family is never just "one more thing." One more referral or medication refill or follow-up appointment or treatment...is one more system to be created, one more barrier to overcome. I asked the experts before me to be thoughtful, that when improving the system, to not to continue to overburden the families at the center of needing mental health care.
The meeting was very stimulating as one expert after another came up to the podium to share for about 5-6 minutes about what they are doing in the mental health space that is working successfully and offer recommendations of what needs to be done to improve the pediatric mental health care system.
It's hard to fully capture and share in a meaningful way all of the good insights provided (although I will link to the online recording of the meeting once it's online). So, I thought it might be best for me to just share some of my favorite favorite quotes or one-line insights from the conference:
- Mental health: get a "check up from your neck up."
- Mental health disorders typically develop in childhood. 1 in 5 children develop a mental health disorder.
- Mental health care is the greatest example of how fragmented our health care system is. (Dr. Benjamin F. Miller, Farley Health Policy Center at the University of Colorado)
- 35% of kids who received outpatient mental health care saw only their primary care provider. (Dr. Benjamin F. Miller, Farley Health Policy Center at the University of Colorado)
- [In mental health], we need to create a culture of whole health. (Dr. Benjamin F. Miller, Farley Health Policy Center at the University of Colorado)
- Schools are becoming the defacto mental health system. (Elizabeth Connors, University of Maryland School of Medicine)
- What if we had an IEP for behavior and mental disorders? What if children had a right to appropriate mental health resources? (Christoper Bellonci @ Tufts Medical Center)
- my personal translation: Why do we, as a society, value all children getting access to education but we don't value all children having access to mental health care? Why are families often left to fiend for themselves in this area?
- We need to better support our "front line providers" who are working with children with mental and behavioral disorders
- Regarding the need to provide better mental health care for our children: "Moral outrage my be our greatest leverage if we chose to use it." (Christopher Bellonci, Tufts Medical Center)
- my personal translation: We cannot sit back and ignore that the children in our country deserve better."
- We need a culture of "shared vision" - where children are considered "everybody's child."
- The last thing we need is another program. We need system transformation. (Dr. Benjamin Miller, The Farley Center in Colorado)
- [We must] Change the question from 'What is good enough?' to "How good can we get?'
- my personal translation: we must refuse to be complacent in what we do in mental health care
- "Whoever has the data...has the influence."
- my personal translation: it is critical to demonstrate through data the effectiveness of whatever you do in health care
Then, I thought about Oliver. What would Oliver say? What would I want tell Oliver, if he could understand, about what I just did and about the discussions that had just been had?
In that moment, I remembered what the child psychologist told me at Oliver's psycho-educational assessment this past February. Eight year-old Oliver was still in the midst of having significant anxiety issues. The psychologist had asked him to draw a picture of his immediate family and each of our roles in the family.
I shared with the room what the psychologist revealed to me, what Oliver had drawn in his family portrait. Oliver had drawn a space ship with most of us family members inside. But, most interestingly to the psychologist, he had drawn himself outside of the space ship, sitting on top as the look out - ever vigilant (anxiety) of the danger that lurked around him.
I shared this with the room. Then looked directly into the eyes of the men and women who sat in front of me and said, "What will I tell Oliver about this conference? I will tell Oliver that he does not sit alone on top of that space ship. He has all of you guys there up with him, looking out and working to protect him from the dangers that lurked."
That's exactly what I am going home feeling - grateful to know some of the work that is already being done in the pediatric mental health space to give better care to families who need it and grateful to be more aware of the work that is still yet to be done.
I'd love to jump 20 years ahead and see where the mental health care culture will be in the future. Here is what I hope to see:
parents will have more resources at their fingertips...
parents will be more welcomed as a part of their care team...
experts from different disciplines (education, pediatricians, psychologists, etc) will be more holistically trained, better aligned and working more fluidly together...
mental health care will be less patient-focused and more family-focused, less patient-centered and more family-driven...
and, most of all, mental health will no longer be something people are ashamed to talk about but something that is embraced as part of whole health wellness.
That change is happening already.