Importance of Guardianship For Special Needs

 by Kami-Leigh Agard

I can’t believe that my autistic daughter is turning 18 next month. Legally, she will be of the age to vote and make her own medical decisions. However, the reality looks very different for my daughter due to her level of autism. Though blessed with herculean strength and athleticism, she still needs assistance with bathing and grooming, dressing, toileting, preparing her meals and other ADL (activities of daily living) skills. My daughter can’t even independently cross the street. So, though I’m a firm believer that with God, miracles do happen, I have to think about the here and now, which is why securing legal guardianship is imperative.

In New York State, parents lose automatic legal authority to make medical or financial decisions for a special needs child once they turn 18, making an Article 17-A Guardianship the primary legal tool used to retain decision-making power. A parent on Facebook page, New York Alliance for Developmental Disabilities (NYADD), described a situation that poignantly laid out why obtaining parental legal guardianship could be a matter of life and death. She stated: “Why you need guardianship. Yesterday my son, age 28, went to the hospital with a fever. They wanted to put an IV in and he said, ‘No.’ I, the guardian, arrived a few minutes later and explained to him why he needed the IV, and so the nurse put it in. Without it, kidney damage was likely. So, if you don’t have guardianship, you can find yourself in life-or-death situations when your loved one says, ‘No,’ to everything. So often people say, ‘No one ever asked me for it, so I didn’t bother getting guardianship.’ Please get guardianship or health care proxy, or whatever your family situation requires.  And carry it with you always.  When you need it, there may not be enough time to go get it."

In New York State, when a person turns 18 years old, they are assumed to be legally able to make decisions for themselves. As a parent, your rights to make decisions for your child (special needs or otherwise) come to a screeching halt. You no longer have the right to speak or consult with your child’s doctors or other providers; you also cannot handle their financial matters. This will present a problem if the person is intellectually or developmentally disabled and is unable or has difficulty making decisions for themselves.

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 Importance of Guardianship for Special Needs