Pediatric Cancer Neuropsycholog-ical Needs Assessment Act (NY State S.8750)

The Pediatric Cancer Neuropsychological Needs Assessment Act (NY State S.8750) requires insurers in New York to provide coverage for neuropsychological assessments for children with pediatric cancers that affect brain development or function.

A pediatric cancer diagnosis changes the lives of children and their families forever. This disease throws an unending set of challenges at patients and their support systems. Navigating the school system can be challenging for even the healthiest families, but pediatric cancer families shoulder the additional burden of caring for their sick children.

Pediatric cancer further complicates the need for specialized educational and additional resources. While most children can return to school after their cancer treatments, the impact of toxic surgery, radiation, and/or chemotherapy cause after-effects that hinder their learning abilities. The Pediatric Cancer Neuropsychological Needs Assessment Act (NY State S.8750) will help remove some of the barriers standing between families and accommodations their children need.

Individualized Education Programs (IEPs) are for students who have disabilities and need special help with their education. An IEP falls under the Individuals with Disabilities Education Act (IDEA).  To qualify for an IEP, a student must be diagnosed with a covered disability, and that disability must affect the student’s ability to learn. Cancer is not a covered disability; however, the educational needs of youth with cancer can be significant. Cancer treatment is 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.

The educational system offers psycho-educational evaluations to children who are partaking in the IEP process. However, these evaluations are limited and inadequate for youth treated for cancer. For example, they do not assess attention, memory, language, or executive functioning (e.g., inhibitory control, cognitive flexibility, organization and planning skills) which are commonly affected by cancer and its treatment and are essential for learning. These areas (and more) can be evaluated through neuropsychological evaluations. In fact, regular monitoring of neuropsychological functioning is a Standard of Care for youth treated for cancer.

Unfortunately, neuropsychological evaluations are not always accessible to children due to the significant costs. Some families are forced to pay for the evaluation out-of-pocket. These assessments can cost thousands of dollars to families already struggling to keep up with the financial costs of a cancer diagnosis.

According to a study from the National Children’s Cancer Society, 20% of children diagnosed with cancer are already living in poverty. Another 25% of families reported losing over 40% of their annual income after a diagnosis. An additional study done by the Environmental Protection Agency found that the average cost associated with pediatric cancer was over $800,000.

Adding pediatric cancer to disabilities covered by insurance companies will improve families’ access to specialized educational resources for their children thus reducing health inequity. The Pediatric Cancer Neuropsychological Needs Assessment Act (NY State S.8750) will ensure that any pediatric cancer patient covered by insurance has access to the resources they need to succeed in school and beyond.

A significant statewide advocacy effort is required for this bill to have a chance to pass. 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. If you have any questions about the bill and how you can support it, please email Mike Henry, Pediatric Brain Tumor Foundation’s Director of Advocacy, at [email protected].

Thank you to Senator Shelley B. Mayer and Assembly Member Christopher Burdick for introducing this bill in the New York State Legislature, as well as Making Headway Foundation and the Pediatric Brain Tumor Foundation’s New York State Cancer Plan Group, whose advocacy efforts led to this bill.

Organizations that have signed the letter of support for the Pediatric Cancer Neuropsychological Needs Assessment Act include:

• Band of Parents
• Brain Tumor Network
• Chad Tough
• Children’s Brain Tumor Foundation
• Children’s Cancer Cause
• CompassionNet
• Daniela Conte Foundation
• Dragon Master
• Elle Foundation
• Friends of Karen
• Making Headway Foundation
• Mattie Miracle Foundation
• Memorial Sloan Kettering Cancer Center
• MIB Agents
• Momcology
• Musella Foundation for Brain Tumor Research and Information
• NYP CHONY
• Pediatric Assessment, Learning & Support (PALS)
• Pediatric Brain Tumor Foundation
• Pediatric Cancer Foundation
• Solving Kids Cancer
• Ty Louis Campbell Foundation
• The Andrew McDonough B+ Foundation
• Zoefia Alexandria Foundation

If your organization is interested in supporting this legislation, please email Mike Henry, Pediatric Brain Tumor Foundation’s Director of Advocacy, at [email protected].