One of the longest standing concerns of the disability rights movement is the misappropriation by others of our rights to make our own decisions. This problem touches every facet of life and is a major factor in the continuing incarceration of older and disabled people in nursing facilities and other institutions for the “crime” of needing help in activities of daily living like dressing, bathing, preparing meals, etc.
Guardianship is the most severe and oppressive means by which our decision making rights can be taken away. The U.S. Senate Committee on Aging recently issued a letter requesting comments on guardianship and alternatives to guardianship and NDY responded on July 19.
NDY’s comments focused on concerns about abuses by guardians, particularly in terms of well documented financial abuse. Far less documented is abuse in the context of healthcare decision making, almost invisible due to patient confidentiality. Yet it should be obvious that many healthcare decision makers are appointed by default under state statutes, and are not necessarily the trusted person the patient would have appointed while considered able to do so. In many cases, default decision makers may have a conflict of interest, for example, if they are an heir or a care giver. Some healthcare providers and allied personnel may be alert to such conflicts of interest, but others are not. Decisions to withhold life-sustaining treatment made by others are a major focus for NDY.
Our recommendations in the public comment point out a number of protections proposed as part of the Uniform Guardianship, Conservatorship and Other Protective Arrangements Act and urge the Committee to work with elder and disability organizations to identify provisions that could be enacted by Congress to establish basic procedural rights to be required in state laws. When needed, supported decision making should be the first approach, while guardianship should never be used except as a last resort. We also urge data gathering and reporting to help better identify abuses and increase accountability.
To review the entire NDY comment, go here.