To the Phenomenal Sickle Cell Community:
Before I write anything else, I want to first remind every warrior, caregiver, provider, and champion that we are a strong, resilient, unbreakable community. These are strange times, yet YOU ARE NOT ALONE. We are living through the first global pandemic in any of our lifetimes and every aspect of our lives has changed. As we wait in our individual homes, separated by state lines and national borders, you are not alone. This community learned long ago that we are bonded by blood and united in passion. This is a new time, with new challenges, requiring a new way of living and interacting with the world. Everything has changed, but one thing remains the same, we are stronger together. The Sickle Cell Consortium’s network of patient/caregiver leaders, community-based organizations, research and medical advisors, and community support partners, are here and ready to support our community in every way that we can.
In 2014 the Sickle Cell Consortium was created to identify the problems, needs, and gaps in the sickle cell community and then develop solutions to address these patient/caregiver-identified concerns. Usually, this occurs during the annual Leadership Summit & General Assembly of Patients, Caregivers, and CBOs held every March. In recognition of the challenges that we now face, this meeting has been postponed and re-envisioned as a Digital Summit, June 11-13, 2020. Instead, over the course of the past month, we’ve held a series of community assessment meetings to define the needs of the sickle cell community. We met with patients, parents, the mental health initiative, educators, and community-based organizations, and collectively, these groups have identified a specific set of resources and support needed to continue to thrive past COVID-19.
Specifically, four major categories of need were identified: social services, mental health support, education support, and access to care. We have spent the last several weeks creating projects and programs to address these needs.
Sickle cell families directly identified specific needs and support services to help navigate the education of young warriors and caregivers. A new Board of Educators and Longterm Homeschoolers was developed after an exhaustive series of assessment and advisory meetings with educators, administrators, warrior parents, and parents raising warriors. This Board recommends that families focus on ensuring that school-age children focus on meeting education benchmarks for their advancing grade level. Working in partnership with HOPE for SCD and Cleverly Changing, we’ve developed a platform to provide education support and resources to ensure that our warriors and young caregivers are prepared to advance to the next grade level in the fall. We’ve compiled a database of existing resources and developed a protocol to provide education assistance. The Board recommends Scholastic Learn-At-Home as an easy-to-follow, digital platform to help children to meet their educational benchmarks for each grade level. The Scholastic platform makes it easy to make adjustments for children with IEP/504 disability plans. Each family is also invited to complete a voluntary Needs Assessment to help identify other ways in which we can help. In addition to subject matter tutorials, the Consortium has also acquired a subscription to BrainPOP, BrainPOP Jr, BrainPOP Spanish, and BrainPOP ELL as part of Warrior University. All participating students are welcome to login to utilize this platform. For more information, to connect with the Parent-to-Parent network, sign-up for tutoring help, or find daily lowtech activities with HOPE for SCD, visit https://sicklecellconsortium.org/education-support/.
MENTAL HEALTH SUPPORT
The Consortium Mental Health Initiative team has organized a series of webinars and community chats to discuss numerous mental health topics, from “Anxiety & Fear” to “PTSD in Isolation”. The schedule for the first 6 weeks are posted online along with a list of online mental health resources and references. To decrease feelings of isolation, we also developed a series of Warrior Games & Challenges, designed to promote community engagement and interactivity.
The Sickle Cell Mental Health Initiative of the Sickle Cell Community Consortium is committed to working with the patients, caregivers, and community-based organizations (CBOs) of the sickle cell community to provide MENTAL HEALTH SUPPORT amid COVID-19.
Check-in with mental health experts to learn more about the mental health concerns facing the sickle cell community, participate in Community Conversations with warrior and caregiver panelists as we share our daily mental health experiences, sign-up for small community chats with mental health counselors, and chase away boredom and feelings of isolation by competing in a various array of Warrior Games!
We are eager to work with mental health professionals interested in helping our patient and caregiver community during this time.
Social services are, of course, a major identified need. We recognize that patients and families may need assistance obtaining cleaning supplies, food, water, basic medical supplies, and other services. We have compiled a list of existing resources and are daily searching for more to add. Visit the resource map, click on your state to be taken to resources in your state. Links for national resources are added weekly. The Consortium network of CBO partners and leaders are preparing to address community needs and have organized a process to do this efficiently. The community’s greatest need in this category is simply access to resources. The Consortium and our partners are working diligently to identify resources to address these needs.
The patients, caregivers, and CBO partners of the Sickle Cell Consortium are eager to connect with any individual or entity able to provide assistance or resources in any of these areas as we work to address the growing needs of the sickle cell community. Please address ideas, thoughts, or concerns to Dr. Lakiea Bailey (firstname.lastname@example.org) or Sharonda Hudson-Sikes (email@example.com).