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Jack Callaghan used to spend hours watching his beloved New York Mets on television, so losing his eyesight three years ago devastated him. It also devastated his siblings Susan Montella and Terry Callaghan, who oversee his care.
Jack is a 49-year-old mentally retarded man with cerebral palsy, who lives in a group home in Manhattan. But when it comes to medical choices, he’s on his own. Under New York State law, as soon as a developmentally disabled or delayed person reaches the age of 18, he or she is considered capable of making independent decisions.
In Jack’s case, that became a problem a few years ago when he needed an emergency operation and the hospital was reluctant to allow Susan or even her mother to grant permission. Susan decided then and there to apply for guardianship, but had no idea where to start. “Who do you go to?” she wondered. “Is there a special law firm? Do you look in the yellow pages?”
Someone referred her to the Association for the Help of Retarded Children (AHRC), a 54-year-old membership organization that provides free legal representation for families seeking to obtain guardianship. “Most of the people we serve don’t have the resources to hire an attorney,” said executive director Michael Goldfarb. As the only city agency offering this free legal service, which usually costs close to $3000, and with just two attorneys on staff, AHRC now has a waitlist of about 300 families.
Or at least they did. AHRC got some badly needed help November 22 from the international law firm Gibson, Dunn and Crutcher. About 25 families, including Jack’s, were invited to the firm’s midtown office, each greeted by a lawyer and paralegal ready to help them fill out all the necessary paperwork. The lawyers will file the claims in January or February, and then all of the families will come together again in February to process these guardianships in Surrogates Court.
Jack’s siblings worked with Gibson attorney Mark Bini, whose younger brother is also mentally retarded. “My parents were lucky enough to afford lawyers and doctors, but a lot of families may not be,” he said. Bini spearheaded his firm’s pro bono efforts along with his partner, Randy Mastro.
Guardianship of adults with mental retardation has become a more pressing issue in recent years as medical advances now allow more children with disabilities to outlive their parents. Sometimes the mentally retarded adult can sign for him or herself, but when this isn’t possible, legal guardians can assist with medical care, future planning and, as of this past March, end-of-life decisions. Without family members assuming guardianship, Goldfarb said, “The decisions of their lives are made by social service agencies.”
Not everyone agrees, however, that guardianship is the way to go. “Why would a parent want to involve the court or the government in their relationship with their son or daughter?” asked Dohn Hoyle, president of the Association for Community Advocacy in Michigan, who has studied the issue. Hoyle prefers alternatives such as using power of attorney or setting up a trust.
But Laurie Stride, an attorney with AHRC, points out that these arrangements can be time-consuming. She fields daily phone calls from relatives looking to avoid such hurdles through guardianship. One client is trying to get her son cataract surgery; since he’s 18, the hospital won’t let her sign for him. Another has a sister who needed a hysterectomy. Right before administering anesthesia, the hospital realized that no one was authorized to give formal consent and called off the operation.
After Stride gave the training session to Gibson’s staff, she looked over the families sitting around the oak tables with lawyers who typically bill their clients $500 to $600 an hour. She smiled and said, “It would take a year for me to file all these cases.”