Proxy healthcare decision-making for persons with intellectual disability: perspectives of residential-agency directors.

The authors mailed a short survey to directors of group homes for adults with intellectual disability. They asked what factors guide proxy health-care choices when the resident cannot decide alone.

Directors ranked 14 items, such as doctor advice, family wishes, cost, or religious rules.

Doctor recommendations and the resident’s own stated wishes landed at the top of the list. Extra cost to the agency and the resident’s religious group sat at the bottom.

In short, medical opinion and personal voice beat money or faith when directors act as health-proxy.

Capio et al. (2013) extends these results. They interviewed mothers who act as proxy for adults with ID and epilepsy. Those mothers often block treatment changes, and doctors usually go along. The 2009 survey shows agency directors value doctor input, while the 2013 study shows doctors value parent input—two sides of the same coin.

Adams et al. (2024) moves the lens from proxy to supported decision-making. Their focus groups found adults with ID rely on trusted supporters and tech tools. This widens the 2009 picture: instead of someone deciding for the person, the person decides with help.

Hastings et al. (2002) used the same survey style in similar homes. They mapped illness rates, not choices, so the papers pair like puzzle pieces—one shows what residents face, the other shows how choices get made.

If you write behavior plans or attend ISP meetings, push for the client’s own words to be recorded now. A short video clip, picture card, or signed preference gives future proxies the top-ranked factor the study found: the person’s own input. Bring that clip to medical visits so the doctor—the second top factor—hears it too.