The Neuro-Inclusive Oncology Care and Empowerment Program at Dana-Farber Cancer Institute provides specialized education and services aimed at improving healthcare outcomes and reducing distress for oncology patients who have intellectual and/or developmental disabilities (IDD).

Historically, patients with IDD and their families/caregivers report delays in care, and patients with IDD often have poorer health outcomes compared to “neurotypical” patients. The Neuro-Inclusive Oncology Care and Empowerment Program was developed to help physicians, and other clinicians at Dana-Farber, care for people who have IDD. Through increased education and advocacy, we address inequities and improve cancer care for patients with disabilities.

Our team is made up of experienced, licensed social workers and other professionals from Dana-Farber’s Adult Social Work Program. This unique psychosocial oncology program provides specialized care to adults with IDD, offers Neuro-Inclusive training to staff and providers, and promotes system improvements to make treatment as accessible as possible.

A cancer diagnosis can be stressful for anyone. Dana-Farber understands the unique challenges for someone with IDD who is navigating cancer care. Our compassionate care team works with patients and their families to personalize treatment plans and appointments, ensuring each visit is as accessible and comfortable as possible.

Some ways we do this are by:

• Exploring communication, learning, and sensory preferences and barriers
• Addressing sensory and/or physical accommodations that can improve patient experience and treatment success
• Developing visual aids (medical stories, first/then boards) to support comprehension and preview what to expect
• Creating plain-language materials that are understandable and actionable for patients
• Providing supportive counseling using evidenced-based and inclusive practices
• Providing consultation to Dana-Farber care teams to promote disability-competent care
• Providing consultation to other medical centers who are looking to strengthen their neurodiversity-affirming approach to provide the best care possible to their cancer patients

After completing a comprehensive assessment of our patient’s psychosocial needs, we identify and address any potential barriers to accessing care.

The following programmatic feedback has been provided by patients who receive Neuro-Inclusive supports, and medical providers who receive consultation:

• Having a clear plan and knowing what to expect helps reduce patient anxiety.

• When the care team is aware of a developmental disability, then accommodations—such as supports addressing sensory sensitivities—are more likely to be ready at the appointment.
• Patients can make informed choices when information is provided in ways that are accessible, understandable, and actionable.

Our next step is to study the impact of the Neuro-Inclusive program on cancer treatment delays and disruptions for people with IDD. For more information, please contact The Neuro-Inclusive Oncology Care and Empowerment Program at neuro-inclusive@dfci.harvard.edu

The program is primarily funded by the C.J.L. Charitable Foundation with additional support from the Nancy Lurie Marks Family Foundation, which has enabled the creation of a research arm as well.

Melissa Levin
2025
neuro-inclusive@dfci.harvard.edu