January 2021

Parents must make important decisions when their child with an intellectual and/or developmental disability (I/DD) turns 18 and legally becomes an adult. Should parents apply for guardianship or consider less restrictive measures such as Supported Decision-Making (SDM) and/or have the young adult execute advance directives such as power of attorney and a health care proxy?
Guardianship in New York under Article 17-A
The New York State guardianship statute relating to individuals with I/DD, Surrogate’s Court Procedure Act Article 17-A, passed in 1966, provides for full guardianship for people with I/DD who lack capacity to make significant financial and health care decisions. Article 17-A has no provision for “tailoring” the guardianship, meaning limiting the guardian’s powers to only those circumstances in which the person has been proven to lack capacity. In this plenary, meaning unqualified, guardianship, the guardian of the person with I/DD assumes all rights to enter into any life decision or contracts (including financial, educational, residential, employment and marriage) and make all health care decisions on behalf of the person, even if they go against the person’s wishes – a decision that can only be reversed through petition to the court.
Why Consider Supportive Decision-Making?
Parents who believe their 18-year-old needs a guardian may find that the courts will apply a more rigorous standard than they did in the past, particularly when the young person opposes it. The legal landscape in the US and in New York is changing in response to a worldwide civil rights movement sparked by the UN Convention on Rights of Persons with Disabilities (CRPD). In 2014, the CRPD explicitly endorsed the right to legal agency for people with I/DD (including the right to marry) and demanded that governments develop less restrictive alternatives to guardianship to allow individuals to access needed support while retaining some or all the rights that guardianship removes. In response, nations including Australia and Israel, and ten states and the District of Columbia, have enacted Supported Decision-Making statutes.  

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