You founded IEC (Institute for Exceptional Care) in 2020. What was the reason behind founding it, and how has the organization changed in the last four years?  

I am the mother to two wonderful young adults – one of whom is autistic. I saw firsthand how a lack of clinician education and poor care coordination led to haphazard treatment. No one told us what to expect at different stages of development, and we had clinicians who gave him the right drug for the wrong reasons at the wrong dose just because they weren’t educated enough. 

My son is mathematically gifted, kind, and highly observant, and it was painful to watch him face increasing struggles over time due to unreliable school and clinical support. We encountered a lot of barriers and problems – and I am a physician!  

IEC was born out of the frustrations and anxieties that too many families face in getting proper medical care for their loved ones with IDD. In founding IEC, we brought together a group of dedicated partners who share expertise in leading national healthcare transformation and the lived experience of trying to navigate a system ill-equipped to care for the complex needs of those with IDD.  

IEC has gained rapid influence for a young organization. Our projects have engaged dozens of self-advocates and family care partners/givers, disability experts, clinicians and healthcare professionals, payers, state and federal regulators, and professional and nonprofit organizations. We are proud to have partnered with key thought leaders in producing important tools to help clinicians and patients, outlining national goals and roadmaps, and setting standards for authentic community engagement.  

Every day, IEC is delivering on its mission of building a movement that gives people with IDD the safe, informed, and high-quality care they deserve across every service and setting and centering their perspectives in the co-creation of solutions. 

What do you see as the biggest challenges for people with intellectual and/or developmental disabilities (IDD) as it relates to healthcare?   

People with IDD too often face unmet healthcare needs, lower quality care, lack of preventive services, and higher rates of chronic conditions and preventable deaths. Accessing high-quality healthcare has been a longstanding challenge – the system is not set up to deal with their often complex needs. Clinicians do not receive the training they need to feel confident and prepared to provide high-quality care and support for people with IDD; services are not designed to take the priorities and needs of individual people with IDD into consideration; and the payment system fails to incentivize tailored, whole-person, coordinated care and services. And the root cause is that the experiences and needs of people with IDD are routinely excluded from healthcare decision-making. 

 IEC is working to transform the system by changing how healthcare is taught, delivered, and paid for, with the voices and experiences of the IDD community at the forefront.   

How does IEC do things differently? How the organization unique in its approach?   

IEC centers the perspectives of people with lived experience of IDD and builds broad coalitions across the healthcare system to co-design solutions that are both practical and transformative.  

 We developed principles of authentic engagement to ensure that the perspectives of people with lived experience remain the primary focus of our work. We fully incorporate self-advocates and family care partners/givers into every project, getting them into rooms with healthcare leaders, removing power differentials, and honoring their expertise equally. 

Authentic engagement that builds trust by turning input into action is critical for designing care models, research, policies, and programs that improve well-being. This work takes significant investment but pays dividends by ensuring we identify the right issues and create inclusive solutions. Our healthcare partners benefit as well by getting first-hand experience working directly with people with IDD. 

What role do you see technology playing in helping make healthcare better and safer for people with IDD?  

 Technology can support improved healthcare in myriad ways, from telemedicine platforms providing access to specialists to devices that accommodate different physicalities, AI-powered tools helping care coordination and diagnostics, and assistive communication devices. 

 Two projects IEC is working on have technology at the core:  

 The Always Uniquely Me app, developed through our SCANS: Seamless Care Alliance Of Nassau & Suffolk project, empowers people with IDD by providing a comprehensive digital snapshot of their healthcare information and personal needs to share with clinicians and first responders in any situation. Currently in beta testing, the app contains quick emergency info, detailed medical history, communication preferences, calming approaches, and more. 

Making IDD Visible is a multi-year project to use artificial intelligence (AI) to better identify people with IDD in healthcare data. Together with partners, including Duke University, Montefiore, Intel, and Epic, we are developing an AI tool that will analyze clinical and billing claims data on over 1,000 patients to help identify children and adults who are likely to have IDD. We believe this tool will empower people with IDD, support more respectful conversations between clinicians and patients, and help reduce inequities in healthcare. 

What is your advice to our readers about how we make healthcare more equitable and accessible? 

The healthcare sector must center the priorities and needs of its patients. When we focus on the perspectives of people with IDD and other medically underserved populations, we build healthcare solutions that can truly benefit all of us. We should all prioritize a system that is flexible and can adapt to individuals’ unique needs. 

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