Why I Participate: Andrea M. Williams, Executive Director, Children's Sickle Cell Foundation

September 24, 2014

Andrea Williams and her son Jonathan
Andrea Williams and her son Jonathan
Through NICHQ’s Working to Improve Sickle Cell Healthcare (WISCH) learning collaborative, teams across the U.S. focus on improving screening and follow-up for those who have tested positive for sickle cell disease and trait, and on improving care across the lifespan for individuals with sickle cell disease. Andrea Williams, who founded and leads the Children’s Sickle Cell Foundation in Pittsburgh, PA, is a parent representative and site lead in the project. NICHQ invited Williams to share her experience in educational advocacy for her child with sickle cell disease.

My youngest son, Jonathan, was diagnosed at birth with sickle cell disease (SCD) through the universal National Newborn Screening Program. My son’s diagnosis spurred me to start the Children’s Sickle Cell Foundation (CSCF) in Pittsburgh. I envisioned an organization that would specifically serve the needs of children with SCD and their families and that would help fund research for a cure.  At the time, I didn’t envision what is now very clear to me: that this support needs to include the education system.

Back to school time can be tough for parents, especially when you have a child with special needs. I have four children who received their education in the Pittsburgh Public School District. With my older children, I was involved in their education in the usual ways – through the parent teacher organizations and various activities. Jonathan’s special needs presented unique challenges that changed my involvement from helping out at school events to focusing on educational advocacy for my son, and for children like him.   

Looking back now, I realize that I hadn’t considered how Jonathan’s numerous hospitalizations would affect his education. The school absences due to sickle cell disease had caused him to silently miss critical building blocks in his learning that, by the third grade, manifested in a significant reading deficiency. Jonathan was reading at two levels below his grade level. The first time I heard those words during a parent teacher conference, my heart broke. I felt like the worst parent for not picking up on it.

Jonathan wasn’t failing any classes, but his reading skills left him frustrated and significantly unprepared for the rigors of fourth grade. We were faced with a crucial decision that could affect his course of learning throughout his educational years and beyond. We decided to have Jonathan repeat the third grade and found him a fantastic tutoring firm that worked with Jonathan twice a week, for a total of 11 weeks. By the end of his sessions, Jonathan had jumped two reading levels! And, he used the strategies that he learned for the rest of that school year and began reading proficiently at the fourth grade level. 

Taking educational advocacy beyond the personal
Until that point, educational advocacy for me had been about making sure that my child had what he needed to succeed. I felt it was up to parents to advocate for their own children, but the situation with Jonathan made me realize that what happened in my family could be happening in other families as well. The same steps I took to support my son needed to be discussed at a systems level so that many other children and families would benefit.    

Sickle Cell Disease

Sickle cell disease is a genetic disease affecting the red blood cells’ physical shape, changing from the normal round and flexible shape to a crescent moon or “sickle” shape. When this happens, the affected red blood cells become rigid and sticky, which inhibits their ability to move through the body easily and provide the body with necessary oxygen. This results in acute episodes of sickle cell “crisis,” which is accompanied by excruciating pain. These unpredictable, episodes of pain lead to chronic disease manifestations caused by the prolonged absence of oxygen and subsequent damage to tissues and organs.

At around the same time, I was learning a lot as a parent partner and site lead for the Sickle Cell Disease Treatment Demonstration Project, a component of NICHQ’s WISCH initiative. That was my first experience with using quality improvement methods to improve existing systems, and I chose to participate because of the potential for making real changes in the care and treatment of people with sickle cell disease.

Then I saw a unique opportunity to use QI methods to address educational advocacy by looking at expanding an existing CSCF program called the Educational Support Program. Through a joint collaboration between CSCF, Children’s Hospital of Pittsburgh of UPMC Sickle Cell Program, Pittsburgh Public Schools and other school districts throughout Allegheny County, that program provided educational liaisons to assist with school work retrieval and loaner laptops for children who are away from the classroom due to sickle cell disease-related illness or hospitalization.

We decided to expand this program to provide professional home tutoring services for children with sickle cell disease who had significant challenges in school. Using NICHQ’s quality improvement framework, we measured success by tracking outcomes such as school performance, attitudes towards learning and engagement.

What were our results?
Every child that received professional tutoring services showed significant improvement in their reading and/or math skills (depending on their target area) and earned higher grades. Parents reported an increase in student confidence, engagement and willingness to complete homework and assignments. This fall, we’re looking forward to the results of standardized testing. 

Educational advocacy can be accomplished on a personal level as we as parents advocate for our children. Systems-level educational advocacy, however, is best accomplished by multisystem collaboration that engages the family as partners in their child’s academic success. Children will succeed in school when we give them the tools, supports and encouragement to do so.

For further perspective from Andrea Williams, visit her sickle cell disease advocacy blog at www.scdadvocacy365.com.