The respect accorded family decision makers, especially if they are court appointed guardians, provided the political foundation for groundbreaking legislation in New York State concerning decisions to stop life-sustaining treatment for persons with mental retardation.

The "Health Care Decisions Act for Persons with Mental Retardation" (HCDA) was signed last September by Governor Pataki.  The new law gave guardians of individuals with mental retardation, appointed by a court pursuant to Article 17-A of New York's Surrogates Court Procedure Act, the authority, subject to strict protections, to withhold or withdraw life-sustaining treatment to avoid cruel and futile suffering.

The law was enacted after a string of brutal deaths underscored the need for reform.

It was breakthrough legislation for New York State which - along with Missouri - has the nation's most restrictive standard for stopping life-sustaining treatment.  The new law has created an enormous demand by parents and family members for information on how the Act has transformed their duties, powers and responsibilities as guardians.