Defining Outcomes That Matter for People With IDD

September 12, 2024 · Becky Kolinski

People with intellectual and/or developmental disabilities (IDD) are often overlooked by the health care system, and can experience health disparities because clinicians are not adequately trained or comfortable providing appropriate care.

• One in 20 Americans has an IDD.
• A person with an IDD is 4 times more likely to be inadequately or inappropriately treated by health care professionals than a person without one.
• 30% of people with IDD experience adverse events during hospital visits.

Accessing high-quality health care that aligns with their unique needs and preferences has been a long-standing challenge for people with IDD—but the U.S. does not have a standard process for setting health priorities and measuring quality for this population.

To build consensus on what people with IDD consider their highest-priority health and life outcomes, and to identify corresponding quality measures, IEC (Institute for Exceptional Care) launched IIDDEAL (Individuals with IDD Engaged, Aligned, and Leading): Outcomes That Matter. NCQA is proud to support this foundational work by participating in its National Consensus Workgroup and by partnering with IEC to identify quality measures that matter.

Defining National Goals for IDD Health Outcomes

The IIDDEAL project convened more than 180 contributors—people with IDD, families and caregivers, clinicians, researchers, payers and regulators—to discover what health and life outcomes should be prioritized, and how health care leaders can support those outcomes.

The result is a consensus framework that defines 43 national goals, 9 health outcome domains and 29 priority elements representing the perspectives of the IDD community. Findings were recently published as Advancing Health Policy and Outcomes for People With Intellectual or Developmental Disabilities: A Community-Led Agenda in the Journal of the American Medical Association (JAMA).

Julie Seibert, AVP of Behavioral Health at NCQA, participated in the IIDDEAL National Consensus Workgroup. “This project has brought a clear focus on what is needed to support the health and well-being of people with IDD, based on their lived experience and what matters most to them,” says Seibert. “The JAMA article presents a roadmap and a vision for the future, and NCQA is excited to be a part of it.”

Identifying Quality Measures for People With IDD

IEC was awarded a grant from the Robert Wood Johnson Foundation to identify quality measures that will support IDD health outcomes standards. NCQA will be a partner on the project.

Funding will allow NCQA to perform an environmental scan to understand:

• Which publicly available quality measures align with the priority elements identified by people with IDD, their families and stakeholders.
• Measures currently being developed.
• Where there are gaps that require new measures.

“The ultimate goal is to gain consensus on a bundle of metrics that can be applied across the lifespan of people with IDD,” says Seibert. “The measures we identify will be reviewed by stakeholders with lived experience, including people with IDD, to determine an appropriate fit.”

How This Work Impacts the IDD Community

An exciting and unique element of this project is the inclusion of people with lived experience as decision makers. IEC recognizes that people with IDD, and their families and caregivers/partners, are uniquely qualified to define the health outcomes important to them.

“It is truly inspiring to see how hard IEC works to include and elevate the perspectives of people with lived experience in this process, and ensure they have a sense of belonging and value,” says Seibert.

Understanding which health outcomes matter most is the first step toward creating a more effective, accountable care delivery model for people with IDD.

Your Next Steps

• Read the JAMA article here.
• Provide feedback on the national goals by September 30.
• Learn more about IEC.