Wednesday, September 14, 2016

VOR Position Paper on Guardianship and Supported Decision-Making

This document is by Hugo Dwyer, the Executive Director of VOR, and the VOR Issues/Oversight Committee. As a member of the VOR Issues/Oversight Committee, I participated in writing this position paper.   JRB

Guardianship is the legal process whereby a state court appoints a person or organization to have the care and custody of an adult or child who has been determined to be legally incapacitated. Parents are the assumed legal guardians of their minor children, but a guardian may be appointed for a child if the parents are not able to fulfill that role. An incapacitated adult is one who has been determined by a court to lack capacity to make some or all personal and/or financial decisions and for whom a guardian has been appointed.

Guardianships are awarded to protect the “ward”, the individual with a disability, from abuse, neglect, and exploitation. Guardians are expected to act in the best interests of the individual and to make decisions over medical, psychiatric, behavioral, and all other aspects of the person’s care that are authorized by the court based on the degree to which the individual is incapacitated. Legal guardianship is both a responsibility and a privilege.

As in every other aspect of providing protection, care, and services to people with IDD, the guardianship system is not problem-free: There are documented incidents of malfeasance, including over-burdened and mismanaged court systems; probate attorneys and professional guardians whose primary interest is to collect fees rather than protect individuals under guardianship; state guardianship systems that fail to adequately protect vulnerable individuals; unjustified isolation by guardians of wards from family or friends; and other forms of exploitation for the personal gain of guardians or guardianship agencies.

Partly as a response to these problems, new initiatives have emerged with the goal of altering, weakening, and even eliminating existing guardianship laws. Supported Decision-Making (SDM) is one initiative that has been promoted by many disability rights advocates. Proponents of this system, notably the Burton Blatt Project at Syracuse University and the Quality Trust for Individuals with Disability, generally appear to be advocating on behalf of individuals with less severe levels of intellectual disability, who are usually better able to interact with their environment and can often express their own desires and articulate their needs.

The Supported Decision-Making movement would change guardianship laws to address the status of those who need guardianship the least, if at all. In the process, these changes could weaken protections for those who are the most vulnerable, the very people for whom guardianship laws were originally written.

VOR maintains that problems with guardianship can be avoided through strong enforcement and monitoring and better access to information on guardianship, especially for family members and friends who make up the vast majority of guardians for people with intellectual and developmental disabilities (IDD). To eliminate guardianship or make it more difficult for family members and friends to pursue will leave people with IDD more vulnerable to the abuse, exploitation, and neglect that guardianship is designed to prevent.

VOR is deeply concerned about any effort to weaken the protections of guardianship. Attempts to replace guardianship with Supported Decision-Making affect not only those with severe intellectual disabilities but also people with IDD who are vulnerable to manipulation and coercion by others as well as individuals who lack awareness of the consequences of their own actions that may cause harm to themselves or others.

Guardians of people with IDD usually have an existing network of informed persons to assist them in making decisions for their wards, including other family members, direct care providers, and medical personnel. This is just what SDM claims to promote, but without the formalities and protection of court-ordered guardianship. The more individuals are able to express their wishes and play an informed, responsible role in their own decision-making process, the more their participation should be included. But it is irresponsible to remove an individual who lacks the capacity to make his or her own decisions from the protection of the court and ongoing evaluation. Most individuals with intellectual disabilities change over time, their needs change accordingly, and their ability to make their own decisions in an informed and responsible manner should be examined at regular intervals, to make sure that they are receiving appropriate care and that all of their needs are being properly addressed.

Changes to guardianship laws in many states have already been proposed. Families should keep abreast of these changes, and advocate for their loved-one if the changes could weaken the protections upon which he or she relies. VOR will do its best to keep you informed. Our vulnerable family members deserve nothing less than the protections that family guardians can provide.


VOR is a national organization that advocates for high quality care and human rights for people with intellectual and developmental disabilities. VOR advocates for a full range of services to address the full range of intellectual and developmental disabilities.

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