Advance Care Planning is Advocacy
Advance care planning is not only about end-of-life. It is a tool for advocacy. It supports authority, self-determination, empowerment, and personal decision making for any of us, should it be necessary for someone else to speak for us if we cannot. Advance care planning supports informed decision making and autonomy, and aligns with Supported Decision Making processes.
As people with disabilities live longer and experience the myriad conditions associated with aging, and interact more and more with community based healthcare systems, it is crucial that people, families, providers, and systems understand who can make a healthcare decision for someone, and what the person wants or does not want, if suddenly, the person cannot make their own decision.
Advance care planning is not just about end-of-life plans. It is a planning process for all of us to ensure we have a backup plan in place, should it be necessary for someone else to make decisions for us. During young adulthood, or during the time any one of us is healthy or our health is well managed, we ought to think about “who” can make a decision for us if needed. It’s when someone is critically ill or develops a life-limiting or life-ending illness that we need to get into the details and decisions around the kind of care someone wants.
InLeadS provides training and support for development of policy and practice relative to advance care planning for people with disabilities. This includes policy review and recommendations, and training and coaching of paid staff or non-paid care partners around developing advance directives. “Staff” may include case managers, service coordinators, care managers, and other paid staff actively involved in care planning and facilitation.