Primary Care

Understanding the needs of patients with intellectual or developmental disability

The Maine Developmental Disabilities Council recently partnered with the Maine Primary Care Association (MePCA) to improve care for adults with intellectual or developmental disability (IDD). The Council had observed that many people with IDD seem to avoid going to primary care physicians when they needed care. Quoted in a case study by the Agency for Healthcare Research and Quality (AHRQ), Nancy Cronin, executive director of the Council, explained, ““Urgent care and emergency care are the most common care settings for people with IDD, so their conditions aren’t being managed well. Primary care doctors just don’t have the training to care for this population.”

Photo by Zuzana Ruttkayova from Pexels

AHRQ recognized the collaborative effort as an “Impact Case Study” in a series that highlights successful projectsthat use AHRQ-funded products and tools—in this cast, Patient Safety Organizations (PSOs) and TeamSTEPPS.

For the project, MePCA’s PSO partnered with national PSOs run by ECRI and the Institute for Safe Medication Practices to collect and analyze data to better understand the experience and possible patient safety issues of patients with IDD. In particular, the collaboration focused on events and situations that led patients to avoid interacting with primary care. TeamSTEPPS was used to perform an initial assessment and develop strategy for the project.

In addition to data analysis and conversations with patients and clinicians, MePCA hosted a “Safe Table” event, a technique for bringing people together to openly discuss safety and quality improvement experiences. Primary care physicians at the event expressed a need and desire for information to help them better serve patients with IDD, according to the AHRQ case study. MePCA reported that it received positive feedback from participants at a later clinical meeting. Comments included:

  • ““This was a very necessary discussion.”
  • “The topic was very uncomfortable. However, it was not so uncomfortable as to make me shut down, rather it made me interested in learning more.”
  • “We need to learn a lot more about IDDD. We could really use guidance on how to interact with these patients—we never received any training in this.”

The project resulted in a new Physician Practice Readiness Form published by ECRI called “Caring for adult patients with intellectual or developmental disability.” The two-page form lists specific considerations for preparation and planning under four aspects of practice, offered below with a single consideration as an example:


  • Attempt to schedule appointment with the same staff & MD; familiarity and relationships are important.

Office/Exam Rooms

  • Dim the lights when possible/consider using only natural light if that is sufficient.

Care provision

  • Always speak to the patient first and not individual accompanying them, unless necessary.

Staff Preparation

  • Avoid the use of figures of speech, use concrete terms.

In preparing the Readiness Form, MePCA also consulted with pediatric specialists experienced at working with patients with IDD.


Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

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