Method: A statewide survey of residential agencies to characterize caregivers' experiences with proxy healthcare decision making, degree and circumstances under which individuals with (I/ DD) participate, and key variables used by agency directors was completed using Dillman’s Tailored Design Method.

 Study Findings: Of 262 surveys mailed, 158 useable forms (60%) were returned. Respondents were middle-aged (mean, 49 years), white (95%), female (54%), and experienced making surrogate health care decisions (mean, 9 years; 95% CI: 8-10). Qualitative content analysis of 102 surveys responding to 3 open-ended questions was performed. Participants reported decisions involving medical and surgical procedures, including cancer care, end of life, and residential placement issues. Common concerns among agency caregivers focused on access, legal issues, terminal care, general misunderstanding related to I/DD, and negative attitudes on the part of physicians, hospitals and staff.

Discussion: Two common themes emerged in the analysis. First, given their diminished autonomy, it can be difficult to include those with I/DD in the decision making process.  Respondents noted that clients with I/DD usually do not make the best decisions for their health, so someone else needs to do so for them. Second, there was concern that outsiders commonly presumed that persons with I/DD have a poor quality of life, when many do not, impacting treatment options and access to care  Contentious experiences with family members in the decision making process were also described

Conclusion: Proxy decision-making is a complex task, and residential agency caregivers face difficult ethical and social issues.