Guardianship is something all parents of children with disabilities must face as their child approaches 18 years of age. Guardianship is the legal process for adults who have a clinically diagnosed medical condition and are unable to make or communicate effective choices about their everyday necessities including health, financial, and safety.
In contrast to guardianship many countries and several states are adopting a new concept to support adults with disabilities. Supported Decision Making (SDM) was developed through the UN Convention on the Rights of Persons with Disabilities. Its concept is simple, it is intended to demonstrate and persuade legislators, that all people have a right to make their own decisions with support from people they choose.
The SDM policy has been ratified by over 170 countries around the world and is currently active in Massachusetts, Texas, and has just begun in New York.
A Fundamental Principle of Human Rights: Dignity
Whereas recognition of the inherent dignity and the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world…
– Universal Declaration of Human Rights, (UDHR), Preface (1948)
SDM acknowledges that all people regardless of their disability have the right to make decisions for themselves. It acknowledges that independence and the decision making process require support from those closest to us. It takes into account things such as power of attorney and health care proxy. Most importantly, it does not take away the rights of individuals with disabilities, it provides a support structure that will provide the assistance and expertise to help individuals make critical life decisions.
The process includes developing lists of people who the individual will choose to help them make decisions and documenting what topics the supporters will help with. This is done in the presence of a notary who can then officiate the document.
Critics argue that guardianship as opposed to SDM leads to the exclusion and marginalization of a segment of society, specifically those with disabilities. In addition, once a court appoints a guardian, that guardian has virtually unlimited control over that person as well as their decisions, actions, and property. There are no measures for conduct accountability. But perhaps the most important criticism is that guardianship does not address the real need for support for those with a disability. A guardian passes on the oversight of the individual and does not develop individualized support or service for those who need it most.
Finally, what are the psychological benefits for those who develop a SDM plan. Knowing that one has the rights and means of making decisions will certainly develop self-esteem, a sense of power, and pride that one can accomplish goals with the appropriate support. SDM is gaining well deserved attention. For more info visit sdmny.org.