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Dana-Farber details how their Neuro-Inclusive Oncology Care and Empowerment program was developed to help physicians and other providers treat cancer in patients who have intellectual and/or developmental disabilities.
Our program offers support services to people with intellectual and/or developmental disabilities (IDD) who are receiving treatment at Dana-Farber. Some examples of developmental disabilities include (but are not limited to): autism spectrum disorder, blindness (or low vision), cerebral palsy, deafness (or hard of hearing), Down syndrome, epilepsy, fetal alcohol syndrome, fragile X syndrome, intellectual disability, Prader-Willi syndrome, spina bifida, and Williams syndrome.
If you are a Dana-Farber patient with an IDD – or a caregiver to one of our patients – we can offer assistance throughout your treatment journey. Don’t have a formal IDD diagnosis? Connect with us. We can provide support.
The Neuro-Inclusive Oncology Care and Empowerment program was developed to help Dana-Farber’s physicians and other providers treat cancer in people who have intellectual and/or developmental disabilities. Patients with IDD and their families/caregivers have reported experiencing delays in their care and often have poorer health outcomes as compared to “neurotypical” patients. Through increased education and advocacy, we hope to address these inequities and improve cancer care for all patients with disabilities.
Our team is made up of experienced, licensed social workers and other professionals from our Adult Social Work Program. Psychosocial oncology focuses on helping patients cope with emotional stress throughout all phases of cancer treatment. 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.
Support to launch this program was provided by the C.J.L. Charitable Foundation.
The words we use to describe people with disabilities matter. Using a shared language helps to foster better communication and understanding. Here are some common words we use on this page and in practice when working with patients, caregivers, and providers:
A cancer diagnosis can be stressful for anyone. We understand the unique challenges for someone with a disability who is navigating cancer care. Our compassionate care team will work with you to personalize your treatment plans and appointments to ensure each visit is as accessible and comfortable as possible.
Some ways we do this are by:
After completing a comprehensive assessment of our patient’s psychosocial needs, we can identify and attempt to address any potential barriers to accessing care.
When you register as a patient with Dana-Farber, we want to understand your individual needs right from the start. When scheduling your first appointment, our intake staff will ask questions that help us screen for people who may benefit from support through our program. They can also share details about what to expect during your visit, and you can ask them how to inform us of your personal care needs.
You can also reach out directly to schedule a consultation with our Neuro-Inclusive Oncology Care and Empowerment Program staff by emailing neuro-inclusive@dfci.harvard.edu.
Do you have a disability that doesn’t sound like the ones listed on this webpage? If so, please contact our ADA Coordinator in Disability Services.
During the intake process, you will be asked if you identify as having a disability or disabilities. You will also be asked if there are specific accommodations that could improve your experience at Dana-Farber. It is always your choice to self-disclose or not about your disability status. Learn more about the types of questions you may be asked during registration.
By completing a comprehensive needs assessment, we are better able to identify any potential barriers to care for a patient with an IDD. For example, we could address sensory sensitivities and create a personalized plan for treatment and ongoing care.
We also continue to consult with our health care professionals on neuro-inclusive practices. Through each of these efforts, we aim to increase access and provide you with the kind of support that works best for you.
To help you get ready for your visit, below is a list of questions that patients and their caregivers commonly ask.
If you are not eligible for this program but would like to learn about our other services, please contact our partners in Disability Services.