A new bill introduced in the New York State Legislature by Senator Shelley B. Mayer and Assembly Member Christopher Burdick will help remove some of the barriers standing between children with cancer and the learning accommodations they need to succeed in school. The Pediatric Cancer Neuropsychological Needs Assessment Act (NY State S.8750) would require insurers to provide coverage for neuropsychological assessments for children diagnosed with cancer that affects brain development or function.
While most children with cancer can return to school after treatment, many struggle with the impact surgery, radiation, and chemotherapy have had on their learning abilities. An Individualized Education Program or Plan (IEP) offers a way for students who have disabilities that affect learning to receive special help with their education.
Unfortunately for pediatric cancer patients and survivors, cancer is not a covered disability even though treatments are associated with cognitive and academic impairment, emotional difficulties such as anxiety and depression, problems with eyesight or hearing, bone and joint problems, and mobility issues, all significantly impacting a child’s ability to learn. Additionally, while psycho-educational evaluations are part of the IEP process, these evaluations do not assess attention, memory, language, or executive functioning, which are commonly affected by cancer and essential for learning.
Neuropsychological evaluations are a more thorough assessment than psycho-educational evaluations and considered a Standard of Care for childhood cancer patients and survivors. However, these evaluations are not always accessible to children due to significant costs. Some families are forced to pay for the evaluation out-of-pocket, which can cost thousands of dollars to families already struggling to keep up with the financial impact of their child’s cancer diagnosis.
Through the Pediatric Cancer Neuropsychological Needs Assessment Act, adding pediatric cancer to disabilities covered by insurance companies will improve families’ access to specialized educational resources for their children, helping to reduce health inequity.
New Bill the Result of PBTF’s New York State Cancer Plan Working Group
After hearing from members of the Pediatric Brain Tumor Foundation’s New York State Cancer Plan Working Group about the challenges children with cancer and their families face, Senator Mayer, the chair of the State Senate’s Education Committee, was inspired to draft and introduce the Pediatric Cancer Neuropsychological Needs Assessment Act. Assembly Member Burdick joined the effort as lead sponsor of the Assembly’s version of the legislation.
Comprised of patient families, survivors, patient advocacy organizations, and healthcare professionals, the New York State Cancer Plan Working Group has been working over the past two years to ensure the unique needs of children with brain tumors and other cancers are represented in the state’s cancer plan.
Since state cancer plans serve as a blueprint for how cancer research and resources are funded and distributed in each state, the language in these policies is extremely important – and very few address pediatric patients. In 2022, the Pediatric Brain Tumor Foundation launched an initiative to get language and funding specific to childhood cancer and pediatric brain tumors incorporated in every state cancer plan. Advocates in New York were the first to organize a working group.
Statewide Advocacy Effort Needed to Pass Bill: How to Take Action
Following the Pediatric Cancer Neuropsychological Needs Assessment Act’s introduction in New York’s State Senate, the Pediatric Brain Tumor Foundation is calling on residents from across the state to join these advocates in getting the bill passed.
If you live in New York, fill out the form below and we will send you information on contacting your New York Senator and Assembly Member, including call and email scripts you can use. Additionally, the Pediatric Brain Tumor Foundation and Making Headway Foundation are looking for advocates who can join us for a day of action in Albany on May 13th. Come meet with legislators and their staff to talk about this important piece of legislation and ask them for their support. (If you don’t live in New York but are interested in making a difference in your state, sign up for advocacy updates here.)
