VOR on Guardianship and Supported Decision Making
By Hugo Dwyer and VOR's Issues and Oversight Committee
Guardianship is the legal process whereby the courts appoint a person “to have the care and custody of a minor or of an adult who has been legally determined to be incapacitated.” (www.mo.bar.org) Guardianships are awarded to protect the individual from abuse, neglect, and exploitation and guardians are expected to act in the best interests of the individual concerning their residential, medical, psychiatric, behavioral, and financial needs. Legal guardianship is both a responsibility and a privilege.
VOR maintains that strong, well-monitored guardianships are essential to the protection and well-being of individuals with Intellectual and Developmental Disabilities (I/DD) who cannot make decisions for themselves. Our membership consists primarily of people who have family members with severe and profound intellectual and developmental disabilities, many of whom have multiple disabilities that may include chronic medical conditions, seizure disorders, visual or hearing impairments, mental illness, and/or extreme behavioral challenges. Many of these individuals function at an infant or toddler’s level although fully grown and need substantial support in every aspect of life. In most cases, our disabled family members have been adjudicated incompetent and a legal guardian has been appointed for them, most often a parent, a sibling or other close relative, or a family friend.
Last week, Congress passed the 2016 Spending Bill. Several VOR members have been working with the Labor Health & Human Services (LHHS) Appropriations Subcommittee to try to get protective language written into the bill that would favor VOR's positions on choice and the rights of the I/DD population. While we succeeded in the House, the Senate LHHS Subcommittee did not agree and the House language was changed.
While we did not achieve the language we wanted, we did achieve some language which will hopefully be a step forward in bringing pressure on the Administration to address our grievances with federal policies which allow federal funds to support law suits brought in the name of individuals with cognitive deficits without their legal guardians’ approval.
You may read or download the text of the bill here
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.”