Interoperability and IDD Care: How Health Information Exchange Can Improve Whole-Person Coordination

Individuals with intellectual and developmental disabilities (IDD) often rely on complex networks of care that include primary care providers, hospitals, support coordinators, and community-based organizations. Yet these systems frequently operate in isolation, creating communication gaps and limiting access to person-centered care plans.

Kemper Tell, CEO of the Lewis and Clark Information Exchange (LACIE), in a Q&A with Infection Control Today^® (ICT^®) says improving interoperability between clinical and community systems is essential to addressing these challenges. Through the implementation of the national electronic Long-Term Services and Supports (eLTSS) standard, LACIE is working to connect providers and community organizations to share person-centered service plans, reduce fragmented care, and support healthier outcomes for individuals with IDD.

ICT: What challenges do individuals with Intellectual and Developmental Disabilities (IDD) face today when it comes to accessing coordinated, person-centered care?

Kemper Tell: Patients with IDD often navigate fragmented networks of care involving support coordinators, primary care physicians, hospitals, and community-based organizations (CBOs). In Missouri alone, there are an estimated 150,000 patients with IDD, but providers often lack real-time access to the person-centered care plans essential for delivering informed, coordinated care. This can result in inefficiencies, duplicative services, increased health care costs, and reduced quality of life for individuals with IDD who already experience disproportionate rates of chronic disease, emergency room visits, and health disparities.

This is true everywhere—not just in Missouri.

Through a trusted connection, Lewis and Clark Information Exchange (LACIE) is helping close these gaps. We’re successfully connecting healthcare providers and CBOs by implementing FHIR’s electronic Long-Term Services and Supports (eLTSS) standard. The first-of-its-kind implementation in the nation enables the exchange of person-centered service plans (PCSPs) across previously siloed systems.

Through this initiative, LACIE is helping lay the groundwork for a scalable, secure, and extensible person-centered data ecosystem in Missouri to better support individuals with IDD in living healthier. This foundation creates future opportunities to further develop other use cases for digital exchange, including deeper integration with case management, billing, quality measurement, and analytics.

ICT: Whole-person interoperability sounds aspirational. Where do systems break down when families, community organizations, and state agencies all share responsibility?

KT: The gap today is less about the absence of data exchange standards and more about inconsistent adoption by technology vendors, shared data governance, and limited integration across clinical and nonclinical settings. The success of whole-person interoperability hinges on collaboration (or lack thereof), but the system is full of competing incentives and goals, which complicate the launch of a scalable, policy-aligned program. When stakeholders are working towards different outcomes, the data meant to connect providers, public health, and the communities they serve is too often siloed.

Based on LACIE’s experience onboarding participants—many of them community-based organizations that have historically been left out of health information exchange—the challenges are less about the underlying technology and more about organizational readiness, workflow integration, shared governance, and supporting providers whose systems were not designed with interoperability or this patient population in mind.

Our rollout meets facilities where they are, supporting both providers with FHIR-enabled systems and those using other connection methods, while providing education, training, and ongoing support to help them effectively use digital PCSP data in their day-to-day workflows.

ICT: If this model works, should payers require it? Or does scalability fall apart once reimbursement pressures increase?

KT: Reimbursement and payment are what make these types of models sustainable. Once you align payment with outcomes for people with complex needs, that creates more predictability for plans, providers, and community-based organizations. If reimbursement doesn’t recognize and reflect the work, that’s when you’ll run into scalability problems.

For payers, there is an opportunity here to incorporate this into alternative payment models and value-based contracts. Non-clinical and social care services are critical to keeping this and other complex populations stable. This would reallocate spending from avoidable high-cost utilization to support proactive, whole-person care.

ICT: At HIMSS 2026, where equity and data access will be major themes, what makes your IDD coordination model more than a niche program and instead of a replicable national framework?

KT: This effort is focused on IDD populations for now, but the challenges it addresses (fragmented systems, limited data access, lack of shared governance, and inconsistent technology adoption and coordination) are universal across the country. Built on the national eLTSS standard with widely accepted interoperability frameworks and a scalable technical architecture, this model acts as a blueprint for care coordination across clinical services, state agencies, and local community providers. Because the underlying infrastructure is designed to support complex patients, the framework can be applied to other high-need populations like older adults who need long-term services and support, those struggling with behavioral health or a substance use disorder, or people juggling multiple chronic conditions.

ICT: Do you have anything else you would like to add?

KT: I would add that connecting health care and community-based services is increasingly important as providers and governments expand their focus on whole-person health. But from a data and technology standpoint, these conversations often get stuck on closed-loop referral platforms or community information exchanges. While these are an important piece of the puzzle, they’re only the starting point for effective connectivity across sectors. Soon, we’ll be seeing outcomes data from onboarded facilities, and by proving what’s possible, we’re creating a scalable model that any state could replicate to improve whole-person care.