By Teresa Anderson, Public Policy Director, The Arc/UCP California Collaboration
Sweet Darby Jean was born in August 2017, diagnosed with Trisomy 13 in the womb, there were not high expectations that she would be able to breath on her own when she was born. Little Darby surprised everyone by breathing on her own when she was born and continued to teach lessons of love, hope, compassion, and strength for the short 15 months that Darby got to spend with her family. She also taught us that we need to do better when it comes to supporting families who have infants or toddlers who are medically fragile. When Darby was born her parents were told that their daughter’s condition was “incompatible with life” which was not only excruciatingly painful for her parents to hear, but also put a label on Darby that created barriers to life-improving services that she and her family would have benefited from.
The long (and at the same time ever so short) journey of navigating all the systems of care left Darby’s family exhausted and feeling deeply saddened that they had to spend so much of their precious time with her fighting for services that should have been in place the day Darby came home. Three words “incompatible with life” and several siloed systems resulted in the family struggling for 15 months to get respite care, in-home nursing services, and critical durable medical equipment that included breathing equipment. It was this experience that led Darby’s family, her mom Cindy, to come to the Interagency Coordinating Council (ICC) for Early Start to tell her very painful and personal story to a bunch of people she had never met before in hopes that this type of experience would never happen to another family. Through her mom, Darby touched all of our lives that day as we all sat and listened to the message being delivered which in part is that words matter! The label given to Darby “condition is incompatible with life” meant that systems of care didn’t consider or provide opportunities for Darby and her family to be supported and thrive… to live the best life possible… for the time she had, and the time they had with her. Darby and her family remind us that supporting families is critical, systems need to coordinate, and family-centered care is the foundation for creating successful partnerships between families and systems of care.
Darby’s Legacy is a beautiful gift to families who have children with complex medical needs, medical providers, regional center service coordinators, early start providers, and anyone else who supports infants and toddlers with complex medical needs. It is a best practices document designed to serve as a step-by-step guide for families and professionals that explains the whole system of existing resources and how to link to the services, with an emphasis on family-centered care. It is the hope and dream of Darby’s family that Darby’s Legacy, Best Practices When Services Families With Infants and Toddlers Who Are Medically Fragile will be distributed far and wide, that every Neonatal Intensive Care Unit will give to families, that every Regional Center will use it as a resource for families, and that it becomes a go to families and anyone else who needs the vital information in the guide. Please read Darby’s Legacy here: ICC-Darbys-Legacy_FV