"Supported Decision Making" (SDM) is an idea that seems both obvious and benign. Who could be against a person with a disability being assisted by friends, family, and knowledgeable acquaintances in making important decisions in their lives? We all do this routinely, whether it is in anticipation of buying a car, moving to a new job in a new community, or weighing the benefits and risks of recommended medical treatments.
But what happens when SDM is proposed as a replacement for the protections of a court-ordered guardianship for a person who is incapable of making some or all decisions on his or her own behalf? Who will be making the decisions for the person? Guardians, 75% of whom are family members or close friends of the individual, are accountable to the person and the court. Without a guardian and the ability to make or communicate decisions, how is the individual protected from abuse, neglect, and exploitation?
VOR has posed this question in the following:
VOR on Guardianship and Supported Decision Making
By Hugo Dwyer and the VOR Issues/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.” 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.
As in every other branch of our legal system, there are incidents of malfeasance and abuse in guardianship: over-burdened or mismanaged court systems, probate attorneys whose primary interest is to collect fees, corporate or state guardianship systems that fail to adequately protect vulnerable individuals, isolation 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 advocate 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. They have launched a campaign called “The Jenny Hatch Justice Project”, named after a young woman with Down Syndrome who challenged her parents’ request for guardianship in favor of SDM principles.
It appears that 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 is deeply concerned about any effort to weaken the protections of Guardianship.
We believe that guardians for individuals with severe intellectual disabilities already include a network of informed persons when making decisions for their wards. This usually includes the guardian, other family members, direct care staff and medical personnel. The more an individual is able to express his or her wishes and play an informed, responsible role in their own decision-making process, the more their participation should be included. But we believe it is irresponsible to remove the individual 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 he or she relies upon. VOR will do its best to keep you informed. Our vulnerable family members deserve nothing less than the protections that family guardians can provide.
For more information on guardianship, visit us at our website.