Supported Decision Making During the COVID-19 Pandemic
By Catherine Oakleaf, Regional Director of Advocacy & Community Engagement, Inclusion Alberta
You may be surprised to learn that almost half, 43%, of adults receiving supports through the PDD (Persons with Developmental Disabilities) Program are independent adults, meaning that they do not have a legal guardian. Independent adults have many important freedoms, like deciding where to live, which educational opportunities, employment options and relationships to pursue, how to manage finances and how to navigate the healthcare system.
Like all adults, independent adults with developmental disabilities often rely on informal supports to make important decisions. Whether it’s asking friends for recommendations before buying a car, calling a parent when we aren’t sure how to get a stain out of the carpet or talking through a medical decision with a loved one, we all depend on the people around us to help us make everyday decisions. This need to consult with our loved ones about important decisions does not go away when we turn 18, regardless of whether we have formal guardianship in place. This raises some specific challenges in the COVID-19 era.
As we have seen over the past 11 months, COVID-19 is a serious illness that sometimes leaves adults incapacitated in hospital. In addition, some adults with developmental disabilities are at increased risk of serious illness from COVID-19. This has the potential to leave adults with developmental disabilities who are capable of making their own medical decisions vulnerable when they require informal supports to understand what’s happening in hospital and/or communicate with hospital staff.
During these challenging times, one tool that some families choose to use is Supported Decision Making. This is a document that is intended for adults capable of making decisions but who would like some support in making specific decisions, including medical decisions. The identified supporter can help to communicate the adult’s questions, concerns and decisions by talking to service providers including doctors, pharmacists, and care centres. The supporter has legal authority to access the adult’s personal information including medical records and help the adult think through decisions.
Supported Decision Making involves simply filling out an online form, designating a support person, establishing a clear start and end date for the supported decision making, and ensuring that the signed paperwork remains on file. This document does not jeopardize the adult’s independence, does not require a legal ruling and can be completed at any time. In the event that the adult does fall ill and require hospitalization, this document may be helpful to ensure that your loved one has the support that she or he requires.
Learn more about the individual and family advocacy that is offered by Inclusion Alberta.