Boston-based Dana-Farber Cancer Institute has launched the Neuro-Inclusive Oncology Care and Empowerment Program, a psychosocial oncology initiative focused on adults with intellectual and/or developmental disabilities (IDD).

The new program, developed by the Institute’s Psychosocial Oncology and Palliative Care Department, serves oncology patients who have IDD, such as autism spectrum disorder, Down syndrome, cerebral palsy, epilepsy and fragile X syndrome.

“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, 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.”

More than 1.3 billion people live with some form of disability. Recent studies report that people with disabilities might not be receiving as adequate treatment for cancer as their non-disabled peers.

As compared to neurotypical patients, those with IDD are diagnosed with cancer at later stages, experience delays in their care and die from cancer at higher proportions. The new Dana-Farber program recognizes the complex barriers that many adults with IDD experience when attempting to access health care. 

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.

The program provides specialized education and care to improve outcomes and reduce the distress often accompanying cancer diagnosis and treatment. The program focuses on:

• Building supportive relationships with patients and caregivers
• Using 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

Patients with disabilities are largely underserved, but they represent a growing need as well as an untapped market for providers. More palliative care and hospice companies are developing programs to meet the specific concerns of these patients to improve access to care.

Almost 40% of people 65 and older had at least one disability from 2008 to 2012, according to a 2014 U.S. Census Bureau report. More than a quarter (25.4%) of disabled seniors were 85 or older, though that age group represented slightly more than 13% of the nation’s aging population, the report found.

The number of seniors who have an intellectual or developmental disability is projected to nearly double, reaching 1.2 million by 2030, up from 641,860 in 2000, according to 2013 research from the University of New Mexico Department of Family and Community Medicine.

“I think that every neurologist needs to be equipped with palliative care skills,” Dr. Claire J. Creutzfeldt, Department of Neurology, Harborview Medical Center, previously told Palliative Care News. “That includes advanced communication skills, addressing nonphysical symptoms, care partners and caregiver burden.”