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.
Compared with patients who are neurotypical, those with intellectual or developmental disabilities (IDD) are more likely to be diagnosed with cancer at later stages, encounter delays in care, be offered fewer treatment options, and die of cancer.
The neuro-inclusive oncology care and empowerment program acknowledges these barriers and engages multidisciplinary teams at Dana-Farber to improve the equity and accessibility of care throughout a patient’s cancer trajectory.
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.
“People who have cancer often experience compounded physical, cognitive, and emotional stressors as they navigate their diagnosis, prognosis, and treatment,” Melissa Levin, MSW, LICSW, Senior Clinical Social Worker at Dana-Farber. “When a person who is facing cancer is also neurodivergent, these stressors are often amplified. The health care system is not naturally set up to provide proactive and ongoing tailored support that can make the difference in whether a person with IDD is truly provided with accessible and comprehensive care.”
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.
How did this program come about?
Levin: The program is embedded within the department of social work, psychosocial oncology, and palliative care at Dana-Farber. As social workers, we focus on the needs of underserved populations and seek to empower our patients by collaboratively addressing barriers to care. We found a similarly focused and passionate partner in the C.J.L. Foundation, which also recognized the unique challenges faced by people with IDD who are navigating cancer. This shared focus and recognition of the challenges faced by patients with IDD led to our program’s creation.
Patient family advisory council members, local disability self-advocates and the caregivers of patients with cancer who have disabilities provided instrumental feedback throughout our needs assessment, programmatic development and implementation, and they will continue to provide ongoing evaluation as our program grows.
Why is a specialized program like this needed?
Levin: People with IDD have unique health care needs stemming from the interactions between their disabilities and the environment. For example, fast-paced, highly stimulating medical environments can be inaccessible or cause sensory overload.
We must recognize the impact of the health care system’s processes and environments to truly support patient who are neurodivergent. Often, people with disabilities are given feedback about what they should do differently to adjust to a situation or barrier. At Dana-Farber, we recognize that to make oncology care accessible for patients with IDD, the onus is not solely on the patient. Rather, we must work to identify and address systemic barriers, like utilizing accessible medical equipment, improving patient-provider communication and developing health-literate materials. Simultaneously, specialized psychosocial assessment and supportive counseling can be tailored to each person’s individual strengths, communication preferences and neuro-developmental profile.
What does it offer and how does it help these patients?
Levin: The program provides specialized education and care aimed at improving health care outcomes and reducing the distress that often accompanies a cancer diagnosis and treatment for oncology patients who have IDD.
Our compassionate inclusive aims of care include
- building supportive relationships with patients and caregivers,
- utilizing an affirming, neuro-developmental 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 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.
Can you describe the program’s scope?
Levin: The experiences of patients with IDD have been under-recognized for years, in part because disability has not been captured in the same way that other demographic identifiers are captured in electronic health records. Dana-Farber systematically screens incoming patients about their disability identities and accommodations. We serve patients directly in the form of tailored assessment, individual counseling, and creating therapeutic materials. We also support patients in a more peripheral manner by consulting with their providers and providing neuro-inclusive health care trainings. As awareness of our disability-affirming practice grows, we expect to serve a greater number of patients.
What impact do you think this will have on treatment outcomes and/or quality of life?
Levin: We predict that our supportive services will decrease the distress experienced by patients with IDD and their caregivers. We hope that when people have comprehensive access to care and their stressors are holistically supported, they will experience improved communication of their needs, engagement with their treatment teams, and, as a result, better quality of life throughout their care.
Will the program evolve or expand over time?
Levin: From the beginning, we recognized that this program would grow in size and scope as we connect with more patients and medical teams and learn more intricately about patients’ needs and barriers to care. As awareness grows, we anticipate serving a greater volume of patients. We will shape our care and expand our team accordingly.
Representation and the full participation of people with IDD in decision-making about their lives matters to us. We will continue to involve people with disabilities, and their caregivers, at every stage of development. They are the experts who can educate us about what they need, what their experiences have been, and where improvements are needed.
Could this program serve as a model for other institutions? If so, what advice would you give to others who want to implement a similar program?
Levin: We aim to serve as a model from which other institutions and providers can learn and, hopefully, replicate in a way that is most feasible for their setting. We are passionate about advancing the cause to improve the quality of care and advance health equity for all people with disabilities.
How We Help Oncology Patients with Disabilities
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:
- Helping to prepare you for what to expect during appointments and treatments
- Developing strategies and visual aids to reduce any anxiety about visits
- Exploring sensory and/or physical accommodations to our environment
- Providing support through individual counseling sessions
- Cultivating supportive relationships between you, your caregivers, and your care team
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.
To help you get ready for your visit, below is a list of questions that patients and their caregivers commonly ask.
Questions you might ask your intake coordinator, oncology nurse navigator, or other administrative staff members:
- What is an oncologist?
- Who is in my care team and what are their roles?
- Can I bring a support person to appointments? Do they need to be cleared/approved?
- Can I bring a service dog to my appointment?
- How do I let my provider know what I need in terms of access and accommodations?
- What accommodations are available to support me and my specific needs?
- What if I haven’t actually been diagnosed with an IDD but this sounds like me?
- What will support look like if I’m feeling anxious?
- What resources will help me understand all the information I’ll get during my treatments?
- How much should I share about my disability, and who is the best person to talk to about my disability/disabilities?
- How will I get from place to place? Can someone help me navigate the hospital?
Questions you might ask your doctor:
- Have you ever provided care to people with developmental disabilities?
- What can we do if I get uncomfortable during my appointment?
- If I am a nonverbal communicator, how can we communicate with each other? In writing? Through Patient Gateway?
Questions that family members and/or legal guardians might ask our staff:
- How do you collaborate with family members and/or legal guardians to support patients?
- How do you support a patient when their family members and/or legal guardian live out of state? What does communication look like with the family members and/or legal guardian?
- If a patient lives in a group home and a family member or other representative acts as their legal guardian, how do you make sure that all perspectives are considered?
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.
After completing a comprehensive assessment of our patient’s psychosocial needs, we can identify and attempt to address any potential barriers to accessing care.
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.
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, neuro-developmental 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. “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 www.dana-farber.org/patient-family/support-services/neuro-inclusive-oncology.
For more information:
Melissa Levin, MSW, LICSW
[email protected].
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