The Forgotten Patients: Bold New Plan Aims to Fix a Shocking Gap in Healthcare
For millions of people living with intellectual and developmental disabilities (IDD), healthcare is too often inaccessible, inadequate, or dangerously misinformed. Now, a new initiative led by Yale University is aiming to transform how this marginalized population is treated across the entire medical system.
In partnership with national advocacy groups, healthcare professionals, and academic researchers, the initiative will focus on building a new model of care designed around the complex, lifelong needs of individuals with IDD. This includes those living with conditions such as autism, Down syndrome, and cerebral palsy, many of whom face barriers to routine care, specialist services, and even respectful communication in clinical settings.
“It’s not just a matter of convenience, it’s a matter of life and death,” says Dr. Brita Roy, a health equity researcher at Yale School of Medicine. “We’re seeing disproportionately worse outcomes across nearly every major health metric for people with IDD.”
Despite advances in inclusive policy and civil rights, the healthcare system continues to leave this population behind. Providers often lack the training to communicate with or understand the needs of patients with IDD, leading to underdiagnosis, misdiagnosis, or outright neglect. Yale’s initiative aims to change that by creating a nationwide framework of best practices, education modules for providers, and inclusive care delivery models tailored to patients with IDD and their families.
At the heart of the plan is a new Center for Healthcare Innovation for Individuals with IDD, which will collaborate with hospitals, schools, and community organizations. The center will work to train doctors and nurses in disability-competent care, collect national data on health disparities, and advocate for policy reform at both state and federal levels.
The timing is urgent. Studies show that people with IDD face higher rates of preventable illness, lower life expectancy, and significant mental health challenges, yet receive fewer diagnostic services and screenings. The COVID-19 pandemic only widened this gap.
“This isn’t just a health issue, it’s a moral one,” says Dr. Roy. “We have to build a system that treats people with disabilities as full human beings, not afterthoughts.”
As Yale’s initiative gains momentum, it sends a clear message: equity in healthcare must include everyone, regardless of cognitive ability.