Ben is a nonverbal man in his early 20s who spent six grueling weeks in a psychiatric ward sedated with medication because a doctor misinterpreted his movements, which were due to pain from an undiagnosed hernia. He needed surgery, not chemical restraints. Ben is not alone.
According to researchers and the Centers for Disease Control and Prevention, there are 16 million Americans with disabilities such as Down Syndrome, autism, cerebral palsy and intellectual disability (low IQ). That is almost equal to the number of new cancer cases each year.
Many people with intellectual and developmental disabilities (IDD) receive substandard and even harmful healthcare. Tragically, they die preventable, premature deaths, including from extraordinarily high rates of suicide and accidents. A recent study in the New England Journal of Medicine found that intellectual disability was the strongest predictor of COVID mortality other than age. One-third of Americans with these disabilities are Black, Brown and/or poor. They get diagnosed later, receive fewer services and have poorer health.
Total economic costs reach hundreds of billions of dollars annually (1% to 2% of gross domestic product) according to a 2014 study. This reflects not just medical and other services but also work absenteeism or unemployment when adults with IDD who otherwise could work can't, or caregivers have to take time to care for family members.
Given the scope of these problems, why isn't IDD care a higher priority in healthcare? Fundamentally, most clinicians lack appropriate training and clinical confidence. And doctors don't reliably code IDD cases, so insurers don't "see" the true size of the population in their data. "All too often in my practice, I have seen adults with IDD suffering because they didn't get the right care as kids," says Dr. Jay Bhatt, a primary-care physician and medical director at the Medical Home Network in Chicago. "We can and must do better."
Second, the system is fragmented. Clinical and support services are not integrated to meet each person's needs, leaving families to struggle in the maze of agencies and rules.
Finally, our health systems don't invest well in the care coordination and wraparound services that people with IDD (and indeed the rest of us) need. They don't pay sufficiently for holistic support to help people with IDD stay healthy and thrive. Minority, poor and rural communities receive even fewer resources.
As Americans with IDD live longer, our healthcare system must act. We already have pockets of innovation, well-integrated models like Utah's Neurobehavior Home program or the care delivery model advocated by groups such as the International Rett Syndrome Foundation. But programs offering comprehensive, tailored and coordinated community care are rare.
So how do we create a truly "neurodiverse-friendly" healthcare system?
It starts with better and safer care delivered by an interprofessional workforce trained in basic competencies and who see those of us with IDD as whole people. There are many groups with deep expertise ready to provide technical assistance to health and social services professionals so they can reliably deliver high value, equitable care.
Next are stronger connections, which means fostering strong relationships between people with IDD and their clinicians. Clinicians also need to formalize processes, like data sharing, to coordinate with one another in a "health neighborhood" offering seamless, integrated care. Healthcare systems must reliably partner with educational and social service sectors to ensure that people with IDD get the supports they need.
Last, we need smarter coverage. This means expecting all insurers–including Medicare, Medicaid and private payers–to identify people with IDD, set standards of care and care coordination in their networks, track outcomes and pay clinicians in a way that reflects the true value of this care.
The high prevalence of intellectual and developmental disabilities means most of us are but one or two degrees of separation from these issues through people we know, care for and love. We can and must do better for Ben and millions of people like him. Changing their experience will require transforming healthcare in many ways and ensuring we all see this population not as some vulnerable "them," but as an integral part of "us."
