A major new report shares important recommendations for how healthcare systems can improve care for people with intellectual and/or developmental disabilities (IDD).
The report is from Phase 3 of IIDDEAL (Individuals with IDD Engaged, Aligned, and Leading), a national effort to figure out what good health looks like for people with IDD and how to measure it. Thirty-eight partners, led by the Institute for Exceptional Care (IEC), reviewed dozens of quality measures to identify which are most important for people with IDD.
What is a quality measure?
A quality measure is a tool that helps track whether patients are getting good care. When a healthcare system tracks these things, it can spot problems and fix them. Without measurement, issues can go unnoticed for years.
Historically, healthcare research has overlooked people with IDD, but this new report wants to change that. Identifying the right quality measures is a major step forward in improving care.
Recommended quality measures
The report recommends 12 quality measures that hospitals, insurers, policymakers, and researchers should start using now. These include measures related to:
- Person-centered care and shared decision making
- Mental health follow-up after hospital or emergency visits
- Transition from pediatric to adult care
- Access to community services
- Contraceptive counseling
- Long-term planning
What healthcare leaders can do
The report calls on healthcare leaders to take three steps:
- Start separating quality measure data for people with IDD from data for people without IDD. Seeing the gaps is the first step toward closing them.
- Make patient surveys and questionnaires more accessible. Written materials should be at a fifth or sixth grade reading level, use visual cues, and allow a trusted support person to assist.
- Include people with IDD in clinical research. Many measures exclude this population partly because the research they are built on did not include them in the first place.
Why this matters
People with IDD face serious challenges in receiving quality healthcare. This report is a meaningful step forward.