Albany, NY – New York State Senator Pete Harckham and Assemblymember Dana Levenberg, along with parent advocate Diana Lemon and other advocates, called today for support of the Shepherd Patterson Notification Act, a bill they introduced that will help improve care and transparency for school-age children with life-threatening illnesses.

Parents and guardians of children with life-threatening medical conditions may be unaware of educational accommodations available to their children and the possible life-saving benefit of sharing medical information with school staff. 

The Shepherd Patterson Notification Act (S.4903A / A.10421) 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 establish a secure electronic portal where families can receive timely and accessible information, empowering them to advocate for life-saving support and appropriate educational services for their children.

To see a video of the press conference, click here. 

“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,” said Harckham. “Otherwise, we are putting too many children at risk of being short-changed and deprived of a full educational experience. I thank Diana Lemon for her untiring advocacy of this legislation, which was initiated by her experiences with her daughter Dream, and also thank Assemblymember Levenberg for her partnership. We cannot let this gap continue to exist between what doctors know about a child and what educators should know about a child.”

“I am proud to sponsor the Shepherd Patterson Notification Act, which will help students with medical needs, their families, and educators have the information they need to ensure these children flourish,” said Levenberg. “We have 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.  It is also dedicated 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 Ossining Community Garden of Dream’s Legacy Center (OCGDLC), said, “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 in that moment.”

Assemblymember Jo Anne Simon, Chair of the Assembly Mental Health Committee, said, “We’re talking about the need to inform parents about their rights and what might be available to their children after they’re diagnosed with an illness or disorder. By having this notification bill become law, then it will make sure everybody has consistent information, some of which the schools may not even know, about the education supports that children might be entitled to.”

Assemblymember Steve Otis, Member of the Assembly Education Committee, said, “This is such an important piece of legislation because if we believe that every child is important, we have to understand that parents need information when different things occur, and we also need our schools to be sensitive to the differences that occur in a child’s lifeand be able to provide the right kind of attention and information. The real crime is not what we know, it’s what we don’t know and what we don’t share with others. That’s what this bill seeks to address.”

With this bill, parents and guardians will be immediately informed of their rights to education services for children with disabilities; it also provides parents the information and rights to navigate the educational system for their child’s needs while providing vital information to teachers, principals and school staff on the medical needs of these children. 

Lauren Green, Executive Director and Resident Master Healing Practitioner at OCGDLC, said, “Early information is care. Families should not have to discover their rights by accident. In my work, I see how deeply a child’s medical needs can impact not only their own nervous system, but the nervous system of the entire family. When families are informed, supported, and guided early, it changes everything.”

Donna Drumm, Esq., Disability Rights Advocate, Drumm Advocacy, said, “Parents and caregivers have a right to know the educational supports available to help their children with disabilities thrive in K–12. Act with kindness and please support the Shepherd Patterson Notification Act!”

Lonice Eversley, Master Teacher in the New York City Public Schools, said, “The Dream Patterson Notification Act provides important opportunities to ensure that our children are safe while in the care of New York’s educators, school-based staff members, and administrators. This legislation reflects New York’s strong commitment to prioritizing the well-being of the state’s most important assets: our children.”

Lisa Rudley, Former Ossining School Board President and Founding Member of New York State Allies for Public Education (NYSAPE), said, “Information is equity. The Shepherd Patterson Notification Act ensures that a medical diagnosis comes with the educational roadmap families deserve. As a former Ossining School Board President, I know that closing this information gap is vital. It is time to mandate 504 Plan notifications that our children’s lives and education depend on.”

Rhonda Ryan, LCSW, Director of Family Support Program at Friends of Karen, said, “When a child faces a critical illness that could impact 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 is entitled to. Access to a good education is not just a right, it is a lifeline.”