The Pediatric Cancer Neuropsychological Needs Assessment Act (NY State S.8750) would require insurers in New York to provide coverage for neuropsychological assessments for children with pediatric cancers that affect brain development or function. A significant statewide advocacy effort is required for this bill to have a chance to pass.

If you live in New York, we encourage you to contact your State Senator and Assembly Member:

• Search the Senate directory using your current address or call the Senate Switchboard at 518-455-2800.
• Search the Assembly directory using your current address or call the Assembly Switchboard at 518-455-4100.
• The Senate’s and Assembly’s Insurance Committees are also important to the passing of this bill. Learn more about the committees’ current members here and here.

Outreach Scripts

The following call and email scripts have been provided to help you with your outreach. If you have questions or need additional support, please email Mike Henry, the Pediatric Brain Tumor Foundation’s Director of Advocacy, at [email protected]. You can learn more about the bill by reading our policy overview here.

Call Script

Hello, My name is __________ and I am a __________ (caregiver, patient, clinician, medical professional, etc.) in your district. I am calling in support of the Pediatric Cancer Neuropsychological Needs Assessment Act, Senate Bill 8750.

This bill would help families gain better access to special education accommodations by requiring insurance companies to cover expensive neuropsychological assessments for pediatric cancer patients. Cancer and its treatment can have a significant impact on the well-being of a child, including 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.

This bill would ensure children with cancer are given the opportunity to succeed academically and socially. I urge the Senator/Assembly Member to support the pediatric cancer community in our district by co-sponsoring the Pediatric Cancer Neuropsychological Needs Assessment Act.

Thank you for your time. I will follow up with your office by sending a one-page summary of the bill.

Email Script

Dear Senator/Assembly Member __________,

My name is ________ and I am your constituent. I am writing you in support of the Pediatric Cancer Neuropsychological Needs Assessment Act.

Pediatric cancer further complicates the need for specialized educational and additional resources. While most children can return to school after their cancer treatments, toxic surgery, radiation, and/or chemotherapy cause after-effects that hinder children’s learning abilities. This bill 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. 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 psychoeducational 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.

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 will ensure that any pediatric cancer patient covered by insurance has access to the resources they need to succeed in school and beyond.

We thank you for listening to the concerns of pediatric cancer families and urge you to co-sponsor this important piece of legislation.

Sincerely,

__________