Meet new Nursing Program Coordinator Bridget Ciliberto
Veteran nurse and classroom instructor Bridget Ciliberto found her calling at SWBOCES and has been named Practical Nursing Program Coordinator.
For many years, agencies, lawyers and schools have advised parents of children with intellectual and developmental disabilities to seek guardianship through New York Surrogate’s Court when their sons and daughters come of age.
As guardians, parents and relatives obtain broad decision-making authority for disabled adults, including over their financial and health-care choices.
However, guardianship may not be right for everyone, the Arc of Westchester’s Nancy Succoso told a group of parents who attended a November SWBOCES SEPTA meeting. Advocates and agencies that serve people with intellectual and developmental disabilities are promoting alternative solutions that are more tailored to individuals’ needs and take into account that they can make certain decisions themselves.
“We want to get the message out that yes, guardianship is a viable option when it’s needed, but it’s not the only option as it had been in years past,” said Ms. Succoso, an advocate, educator and administrator with the organization. “We want to educate families, judges, law clerks, attorneys, family members and educators so they know that there are other, least-restrictive alternatives to guardianship.”
Under New York law, people 18 and older are presumed to have the capacity to make their own decisions on finances, health care, contracts and other areas. For someone who doesn’t have the capability, the courts can appoint a guardian. Families file a petition with Surrogate’s Court for guardianship and submit reports that confirm the individual’s eligibility based on IQ and functional deficits.
Other alternatives for families of children with intellectual and developmental disabilities include a health-care proxy, power of attorney and guardianship through the state Supreme Court system. Guardianship through Supreme Court is for people who lack mental capacity – often the elderly – and is tailored to an individual’s needs. The process is more involved than obtaining guardianship through Surrogate’s Court.
Supported decision-making is “presumed competency” with supports, Ms. Succoso said. “It recognizes that we all get help in making decisions, making choices and in exercising our rights.”
The Arc of Westchester is a partner in Supported Decision-Making New York, an educational campaign that promotes supported decision-making agreements, which are tailored to the wants and needs of individuals with intellectual and developmental disabilities. The coalition received a five-year grant from the state Developmental Disabilities Planning Council.
“We think having a team of supporters is almost better than having one guardian because it really prepares you going forward for a fuller life,” Ms. Succoso said. “We need to put something in place that allows the individual to continue to manage their life when we’re no longer here.”
Tremendous changes have taken place since New York’s initial guardianship legislation took effect in 1969, said Lawrence Faulkner, general counsel for the Arc of Westchester. At that time, individuals with intellectual and developmental disabilities were considered children for life under the law. The state essentially created an “all or nothing” guardianship system that no longer meets everyone’s needs and abilities, he said.
As for supported decision-making, young adults with intellectual and developmental disabilities may already have a network of helpers and supporters, Mr. Faulkner said. It would just be a matter of formalizing that “so that when that individual says ‘I want that car,’ or ‘I don’t want that operation,’ that decision will be respected.”
Supported Decision-Making New York wants the state to require third-parties to accept the agreements developed with the adults with disabilities. The group believes legislation and regulations will be forthcoming.
“We are looking to really transform that current system,” she said. “We believe that supported decision-making promotes autonomy, and it helps you become more self-determined. It allows your choices to be heard and acknowledged.”
Another goal of the campaign is to restore rights to adults who have guardians and who have the capacity to make certain decisions on their own.
Mary Grace Stefanchik, whose son Thomas is in the SWBOCES program at St. Matthew’s, said her main reason for attending the workshop was to find out if he will need a guardian when he turns 18. He is high-functioning and his IQ is on the borderline for having a disability.
Supported decision-making may be a good option for Thomas, even though the agreement is not a legally recognized document yet, Ms. Stefanchik said. It’s good to know there are alternatives to guardianship.
“There’s got to be a system in place which is not as restrictive as the old system; where there’s some flexibility,” she said. “We want him to be independent as much as possible.”
The workshop was helpful to SEPTA parents and families who are facing important decisions about their children’s future. “A special thank you to the Arc of Westchester for information regarding legal and ethical challenges with guardianship and information about supported decision-making,” said Tappan Hill School Principal Phyllis Rizzi. “We look forward to future Arc workshops designed to assist our families.”