Tuesday, January 21, 2020

Tuesday, January 21, 2020 -- Mattie died 538 weeks ago today. 

Tonight's picture was taken in June of 2009. This was what Mattie looked like after his third surgery, which was for a sternotomy. Mattie's chest had to be opened up so that 9 lung tumors could be removed. Whether I post this photo or not, this vision of Mattie after each surgery is permanently etched into my mind. Not to mention the sounds of pain, frustration, and hopelessness. You don't forget this as a parent, and I carry each and every experience we had with Mattie into my advocacy work.  





Quote of the day: Though 11 million American children have special health care needs, few meet Supplemental Security Income's (SSI, through the Social Security Administration) strict eligibility standards - either because their disabling conditions aren't severe enough or because their families' income and savings exceed the program's low limits. Indeed, just 1.7 percent of all children receive SSI benefits. To qualify for SSI, a child must have a very serious condition that is backed up by medical evidence. ~ Kathleen Romig (https://www.cbpp.org/research/social-security/ssi-a-lifeline-for-children-with-disabilities)

We spent the day with the Committee on Childhood Cancers and Disability at the National Academies of Sciences, testifying on the functional impairments of childhood cancer, and providing input to the Social Security Administration. We are helping to shape policy!

Peter and I attended the entire committee meeting today from 9:30am to 4:30pm. It was a great experience for us, as we got to hear speakers from Dana Farber, Children's National Medical Center, St. Jude, and Children's Hospital Los Angeles. 

The committee asked me to serve on a panel, to give voice to a child and family's experience with cancer. Particularly focusing on how childhood cancer produces impairments (physical and psychosocial) in children and how these impairments affect overall functioning and qualify of life. 

How did the committee find out about me? Well three authors of the Psychosocial Standards of Care serve on this committee. This is Barbara Jones. Barbara is the Associate Dean for Health Affairs at the University of Texas at Austin in the School of Social Work. We have known Barbara since 2013, when we held the first think tank on the Psychosocial Standards at a national conference. Barbara served as the panel moderator today. 

Me with Megan Elam (Director of School Services at Cincinnati Children's Medical Center) and Stacia Wagner (President of the Children's Brain Tumor Foundation). All three of us presented along with Dr. Greg Aune (who called into the meeting). Greg is a childhood cancer survivor and a pediatric oncologist. He has a very powerful story about the long term physical and psychosocial consequences of cancer. 

I will highlight some of the lessons learned from today's meeting in future blogs. As we found some of the cutting edge research presented quite impactful. 

Below are my slides. I was asked to talk 7 minutes total. So I had to be brief. In that time, I had to illustrate who Mattie was, his impairments, and the long term consequences on him and us. 

After we all presented, the committee of 16 people got to ask me and the panelists questions. I honestly did not think medical doctors (who comprised much of the group), would ask me questions. However, not only did they ask questions, their questions were substantive and very thought provoking. As I can see they grapple with how to tell families about psychosocial issues, about discussing long term disabilities, and other life altering conversations. Mind you, the system sets up these clinician for failure, because there isn't enough time allotted for them to spend with each patient. 

My first slide told them a little bit about Mattie and his experience. Highlighting that Mattie did not have these mental health issues prior to cancer and that after three months into treatment Mattie NEVER walked again. So as parents were were faced with childhood cancer and profound disabilities. 

This slide focused on the physical impairments and their impact. I specifically wanted to show photos to get my message across. 

But for Mattie, I would say that the psychosocial impairments almost outweighed the physical ones. They were also very intertwined because Mattie's physical disabilities impacted his mood and how he felt about himself. 

Briefly talked about the Foundation and the important role psychosocial providers play in assessing and treating functional impairments. 

Naturally I couldn't end my talk without mentioning the Psychosocial Standards of Care. My hope is that the Standards are specifically addressed in this report to the Social Security Administration. 

Needless to say, as I sat on the panel, my initial though was..... what am I going to share with these professionals and researchers? After all my story isn't about the data, it is personal and on-going. Yet I found the committee was listening and truly interested in our lived experience. Any time, I can share Mattie's journey and potentially change the way care and support are provided, I view it as a good day.