Dana-Farber Cancer Institute launched the Neuro-Inclusive Oncology Care and Empowerment Program, a psychosocial oncology program that is specialized for adults with intellectual and/or developmental disabilities (IDD). The new program, developed by Dana-Farber's Psychosocial Oncology and Palliative Care Department, serves oncology patients who have IDD, such as, but not limited to, autism spectrum disorder, Down syndrome, cerebral palsy, epilepsy, and fragile X syndrome.
The Neuro-Inclusive Oncology Care and Empowerment Program recognizes the complex barriers that many adults with IDD experience when attempting to access healthcare. By collaborating with the many teams involved in a patient's experience at Dana-Farber-from transportation to registration to clinicians-the Neuro-Inclusive Oncology Care and Empowerment Program seeks to make cancer care more equitable and accessible at every step.
As compared to neurotypical patients, patients with IDD are diagnosed with cancer at later stages, experience delays to their care, are given fewer treatment options, and die from cancer at higher proportions.
The Neuro-Inclusive Oncology Care and Empowerment Program provides specialized education and care to improve outcomes and reduce the distress that often accompanies cancer diagnosis and treatment. The program focuses on:
- Building supportive relationships with patients and caregivers
- Utilizing an affirming, neurodevelopmental lens to tailor psycho-social assessment
- Previewing what to expect when attending appointments and treatments
- Developing strategies and visual aids (such as social stories as a supportive visual tool to explore what may occur during treatment)
- Exploring sensory and/or physical accommodations that can be made to the environment
- Providing supportive counseling using evidence-based and inclusive practices
- Educating, consulting, and providing interventions to care teams to promote disability competent care
This program is aligned with Dana-Farber's mission to provide expert, compassionate, and equitable care to children, adults, and their families, while advancing the understanding, diagnosis, treatment, cure, and prevention of cancer and related diseases. Dana-Farber strives to ensure that all people can reach their full potential, and no one is disadvantaged because of who they are.
"The Neuro-Inclusive Oncology Care and Empowerment Program will bring us one step closer to equitable care by supporting people who are neurodivergent as they navigate their cancer diagnosis and treatment," said Melissa Levin, MSW, LICSW, Senior Clinical Social Worker at Dana-Farber. "By making cancer care more accessible and supportive, we hope to improve outcomes and reduce health inequities experienced by people with intellectual and/or developmental disabilities, a group that is disproportionately underserved when facing cancer."
Support to launch the program was provided by the C.J.L. Charitable Foundation. Patients and caregivers may learn more at https://www.dana-farber.org/patient-family/support-services/neuro-inclusive-oncology
