NCSA Position Statement
At age 18, an individual reaches the age of majority, the legally defined age at which a person is considered an adult. Because many adults with severe autism lack competence to make their own legal, medical and other decisions, states offer guardianship proceedings in which a person or organization is appointed by the court to assume those responsibilities. Guardianship provides severely autistic adults with the legally enforceable and judicially monitored protections they need to ensure their interests are being met. Guardianships vary from state to state; in many they can be narrowly crafted based on the specific incapacities of the disabled individual.
Guardians have an enforceable legal duty to act in their wards’ best interests, including considering their preferences before rendering decisions over medical, psychiatric, behavioral, financial and other aspects of care as authorized by the court.
Alternatives to guardianship are sometimes appropriate for other populations. For example, if an adult has cognitive capacity to delegate particular decisions via power of attorney, that instrument may enable the appointed individual to make sound medical and/or contractual decisions on behalf of the person with a disability.
On the other hand, Supported Decision Making (SDM) is another process that has been suggested as a viable alternative to guardianship. SDM is based on the assumption that all people with I/DD – including those with severe autism – can make their own decisions with support from an informal network of advisors. These advisors do not need to be court-appointed, are subject to no legal supervision, and do not bear any responsibility for ensuring the success of outcomes. Some SDM proponents view the “right to fail” and the “dignity of risk” as important freedoms, regardless of the individual’s ability or vulnerability. But SDM in lieu of guardianship may leave a severely autistic individual without legally enforceable protections and vulnerable to negligence, manipulation, coercion, and abuse.
Of course, if an individual has the cognitive capacity to make her or his own informed decisions, guardianships should not be awarded – or, at the very least, should be strictly limited. And guardianships that are awarded should be properly enforced and monitored, and reviewed over time with the changing needs of the individual.
Guardians provide an invaluable role in maximizing the quality of life of severely autistic individuals, and NCSA supports guardianship as a fundamental protection for this vulnerable population.
Adopted by NCSA Board of Directors December 10, 2018
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