Perceptions of Health and Healthcare of People With Intellectual and Developmental Disabilities in Medicaid Managed Care.

Eussen et al. (2016) asked adults with intellectual and developmental disabilities what ‘good health’ and ‘good healthcare’ mean to them.

The team ran focus groups inside Medicaid managed-care plans.

They kept the questions open-ended so people could speak in their own words.

Good health equals no pain, being able to bathe and dress, and doing fun stuff like seeing friends.

Good healthcare means you can get in the door, the doctor listens, you understand the forms, and staff treat you like a person.

These simple definitions came straight from the participants, not from textbooks.

Faso et al. (2016) asked a similar question the same year and got the same themes: health is happiness and freedom, not just diet and weight.

Jin et al. (2020) looked at numbers instead of words. They found weight and inactivity predict poor health, while ID severity does not. The two studies seem to clash, but they measure different things—feelings versus body stats—so both can be true.

Torelli et al. (2023) later showed that the Affordable Care Act cut skipped care for adults with ID, proving that access matters as much as the doctor’s attitude.

Use the client’s own words when you set health goals. If ‘good health’ to them is walking to the store pain-free, write that in the plan. Check for pain at every visit, teach staff to explain forms in plain language, and treat small talk as a medical intervention. When clients feel heard, they come back—and that keeps them healthier.