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.”
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On July 11th, Mary Lazare, Principal Deputy Administrator and Acting Commissioner on Disabilities at the Administration for Community Living (ACL) spoke at the Autism Society's 2018 Convention in Washington, D.C. During her keynote speech, Ms. Lazare expressed recognition for Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID) as part of the full system of care. While no recording of the speech exists, third hand accounts of Ms. Lazare's comments have spread throughout social media. "Community Only" advocates were outraged, and have raised their voices demanding retraction of her comments and calling for her resignation.