Promoting Tailored Decision-Making Support for Persons with Disabilities: A PFW and MCW Partnership

Expanding supported decision-making (SDM) education and clinical services for people with disabilities

Full Project Name:Promoting Tailored Decision-Making Support for Persons with Disabilities: A PFW and MCW PartnershipPrimary Community Organization:People First WisconsinPrimary Academic Partner:Lindsay D Nelson, PhD, NeurosurgeryAward Amount:$50,000

Award Date

January2024

Project Duration:18 months

Project Summary:

People with disabilities are often assigned a surrogate decision-maker to represent them in making decisions surrounding their health and well-being. The newer concept of supported decision-making (SDM) helps people with disabilities to maintain their legal rights and autonomy to make decisions for themselves, with support. In Wisconsin, legislation was recently passed affirming that all adults, including people with disabilities, have the right to make their own health-related decisions, among others related to their personal rights as a legal adult.

This project aims to identify which medical specialties have the greatest need for SMD education and what barriers exist to implementing SDM agreements in healthcare practices. Ultimately, researchers aspire to educate more clinicians and medical students and encourage more understanding, confidence, and compassion for helping people with disabilities and their families.

Outcomes & Lessons Learned:

Designed and distributed 953 surveys, with a response from 125 clinicians, to investigate clinicians' knowledge, practices, and perspectives regarding managing patients with decision-making difficulties and supported decision-making agreements (SDMA) to learn of the knowledge level and awareness healthcare providers possess
Assessed qualitative and quantitative data collection, which illuminated essential knowledge gaps, ethical questions, and practical concerns, which helped to fuel the production of the educational presentations and inform future collaborative work
Developed and disseminated educational presentations for clinicians working in neurology, geriatrics and palliative medicine to shed light on the diverse circumstances and settings related to decision-making capacity