ALBANY – Putnam-Westchester State Senator Peter Harckham and his counterpart in the State Assembly, Dana Levenberg, both Democrats, called on Albany lawmakers Monday to support the Shepherd Patterson Notification Act, a bill they introduced that will help improve care and transparency for school-age children with chronic life-threatening illnesses.
The Notification Act will provide parents and guardians with information to help their children while informing teachers, principals, and school staff on the medical needs of their children. It will also set up a secure electronic portal where families can receive prompt and accessible information, empowering them to advocate for life-saving support and proper educational services for their children.
Harckham told an Albany news conference, “With over 480,000 school-age students in New York living with a disability or a life-threatening illness, doctors and physicians need to inform parents and guardians about the free and appropriate educational services that are available to their children. If we do not, too many children may miss out and be denied complete educational experience.”
Levenberg said they dedicated “this important bill to the memory of Dream Ioni Shepherd, a strong and courageous young woman whose legacy continues to promote positive change in the lives of so many young New Yorkers. I also dedicate this work to one of her teachers, Ms. Patterson, who was able to intervene in a medical emergency because of her awareness of Dream’s medical history with Sickle Cell Disease. Thank you to Dream’s mom, Diana Lemon, for bringing this issue to our attention and I encourage my Assembly colleagues to join me in fighting for its passage.”
Diana Lemon, co-founder of the Community Garden of Dream’s Legacy Center addressed the news briefing, saying, “As a young mother of a child living with Sickle Cell Disease, I did everything I knew to do to protect my daughter, but no one informed me that she was entitled to educational accommodations that could support her in school. I learned that through experience. When Dream was in kindergarten, a teacher who understood her baseline recognized that something was wrong and insisted on action. That decision helped save her life at the time.”
Rhonda Ryan, director of Family Support Program at Friends of Karen in North Salem added: “When a child faces a critical illness that could affect their future, a parent should not have to navigate the educational system in the dark. The Shepherd Patterson Notification Act will ensure parents are informed, empowered, and able to advocate for the education their child because access to a good education is not just a right, it is a lifeline.”
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