Healthcare for neurodivergent individuals has long been riddled with challenges, from delayed diagnoses to fragmented care systems.
The burden often falls disproportionately on families, particularly caregivers, who navigate waitlists, insurance battles, and limited resources. But as awareness of neurodivergence grows, so does the opportunity to rethink how healthcare is delivered, taught, and financed.
With innovative tools and a shift toward inclusive, patient-centered care, organizations like the Institute for Exceptional Care (IEC) are driving systemic change. As Dr. Mai Pham, founder of IEC, explains, the goal is to create a healthcare system that works for everyone, not just those who fit neatly into its traditional framework.
A Personal Mission Becomes a Systemic Solution
For Pham, the journey to reimagine healthcare began at home. “My second-born, Alex, is 22 and autistic,” she shares. “Our family’s experience with their mental health crisis in high school led to questioning and exploration on my part about how we failed them and how the healthcare system failed us.”
Despite her position as a national healthcare leader, Pham found herself unprepared for the realities of navigating a system ill-equipped to serve families like hers. “I realized families without our resources and healthcare connections would face even worse challenges,” she says.
This realization galvanized Pham to launch IEC, which focuses on preparing clinicians to work with individuals with intellectual and developmental disabilities (IDD), designing systems to meet diverse patient needs, and finding better ways to finance those services. “We need to balance professional expertise with the wisdom of patients’ and caregivers’ lived experiences,” Pham emphasizes. “Healthcare should aim for holistic well-being, not just the absence of disease.”
The Caregiver Burden
The gaps in the healthcare system place an incredible burden on caregivers, often mothers, who are forced to become full-time coordinators of their child’s care. Robin McIntosh, CEO of Avela Health, shares her personal experience: “Many caregivers, myself included, quit their jobs to manage the overwhelming coordination required to access quality healthcare. From navigating waitlists to driving to distant appointments, it’s an exhausting journey.”
Compounding the issue is the lack of diverse care options. Most families are funneled into Applied Behavioral Analysis (ABA), which may not be suitable for every child. “This overreliance on caregivers and the limited spectrum of services make an already challenging journey even more daunting,” McIntosh notes.
Building a Culture of Inclusion
For meaningful change, healthcare systems must embrace inclusivity at every level. IEC is leading the charge by building coalitions that bring healthcare leaders and community members together to co-create solutions.
“Our healthcare partners tell us that the process changes them,” says Pham. “It creates a new appreciation for the value of community input and results in better solutions that are more likely to be effective. It also takes the pressure off healthcare leaders to have all the answers.”
One example of this collaborative approach is the Always Uniquely Me app, developed by IEC in a project on Long Island. The app allows individuals with IDD or their caregivers to upload personal information, such as communication preferences, anxiety triggers, and tips for effective interactions. “It humanizes the person to that clinician and helps reduce stress for everyone involved,” Pham explains.
Pham envisions the app being useful beyond the IDD community. “Wouldn’t that also be incredibly helpful for people with dementia? Or non-English speakers?” she asks. “We’re trying to create the healthcare equivalent of curb cuts—a system designed to be inclusive rather than retrofitted.”
The Role of Technology in Transforming Care
Technology is proving to be a game-changer in improving healthcare for neurodivergent individuals. Telehealth, for example, allows clinicians to observe patients in their home environments, reducing the stress of traveling to medical offices.
“Telehealth offers a clearer window into a patient’s daily life,” says McIntosh. “It’s improving both accessibility and quality of care for autistic individuals.”
AI-powered platforms are another promising innovation. Avela Health uses AI to deliver scalable, personalized care plans grounded in evidence-based methodologies like Naturalistic Developmental Behavioral Interventions (NDBI). “These tools integrate seamlessly into daily routines, offering families practical solutions,” McIntosh says.
Beyond care delivery, technology is also enhancing clinician efficiency. Pham highlights the potential of AI to streamline administrative tasks, such as notetaking, allowing clinicians to focus on patient care. “No one enters this field to take notes,” she says. “Technology can free up time for what truly matters.”
