Issues to Consider Regarding Guardianship and Supported Decision Making

By VOR's Issues and Oversight Committee on Guardianship Rights

Individuals with intellectual and developmental disabilities (I/DD) and their parents, family members and guardians may have heard about Supported Decision-Making (SDM), an initiative that could affect their decision-making rights. Some see SDM as an alternative to guardianship, while others view it as an attempt to remove the legal instrument that provides a safety net for vulnerable individuals.  

VOR is a national organization that advocates for high quality care and human rights for individuals with I/DD. We understand the valuable role that guardians play in the emotional and physical well-being of their wards. As advocates who appreciate the diversity of the I/DD community and the need for a wide array of supports, we want to ensure that guardians and family members are aware of the issues connected to Supported Decision-Making so that they can make informed decisions about the care of their loved one with disabilities.

Policy favoring deinstitutionalization has had a major adverse effect on many individuals, with a shift in funding priorities from Medicaid Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID) and other specialized facilities, to smaller service options, such as Medicaid Home and Community-Based Services (HCBS) settings.

By Tamie Hopp, VOR Director of Government Relations & Advocacy in Nonprofit Quarterly, July 16, 2014 (and reprinted in the Summer 2014 Nonprofit Quarterly Print edition)

Early reforms were quite properly motivated by the need for a system of care and supports that responded to the very individualized and diverse needs of the entire population of people with I/DD. These reforms, however, also set the stage for decades of ongoing deinstitutionalization, resulting in the elimination of specialized housing, employment and education options for people with I/DD, leaving some to question the price of “progress.”