Before her 18th birthday, my daughter Brigette’s individualized education program (IEP) team gave us a clear, no-exceptions directive: You need to acquire guardianship through the courts to protect her.
Brigette lives with cerebral palsy, and we were told that if something happened to her when we were not with her, and the hospital needed a signature for surgery, that we would not be permitted to sign for her without a guardianship — which could lead to complications, including death.
We now know this was untrue, but back then, this information was terrifying, and my husband and I immediately started the guardianship process because it’s what we thought we needed to do to protect our daughter.
It’s not that the IEP team lied to us 16 years ago. It’s that they did not know any better.
We represented ourselves and hired an attorney for Brigitte at a cost of $275. The attorney came to our home to meet Brigitte, and after just 10 minutes with her, agreed that she was incompetent.
Brigitte is nonverbal. She uses expressions to communicate. She is able to clearly communicate things like “yes,” “no,” “I do or don’t like that” and “I do or don’t want that.” It took my husband and I years to understand this communication, but it took a lawyer only 10 minutes to decide she was incompetent.
Neither Brigitte nor we ever appeared in court. We never appeared in front of a judge. We paid the bill, and Brigitte lost her freedom.
A few years later, I met two advocates who changed my life: Ari Neeman and Jonathan Martinis. I met both of these men during a yearly national conference that I attended. I watched a YouTube video from 2013, where Ari talked about some people who live with disabilities not being considered “real persons.” I also started watching Jonathan Martinis’ videos about supported decision-making. Brigitte was not considered a “real” person because she did not speak in a way that the world understood. Her signature — even though it was a mark she made — did not matter. We wanted Brigitte to have the same opportunities as her five brothers do. So much had been taken away from her at birth by having cerebral palsy, but we wanted her to have as much control over her life as she was able to with the correct support system. Life is all about opportunities and support.
We advocated for years to have Brigitte’s guardianship terminated. It wasn’t needed. No one ever asked to see guardianship papers. I wanted to give her life back to her.
The opportunity finally came when a new rule was added to Delaware’s Rule 180-C: Termination of Guardianship, which says: “If the court finds that guardianship is no longer necessary due to availability of other measures and such measures are in the best interest of the person with the disability, the matter may be administratively closed without prejudice.”
As soon as we found out about this new rule, we terminated Brigitte’s guardianship in favor of surrogate decision-making.
Schools, doctors, hospitals and banks, along with families, need to be educated on every option that is available to their children, so that caregivers don’t make the same mistake we did. We celebrate Nov. 30 every year: That is when Brigitte’s guardianship was terminated. That’s her freedom day.
According to estimates by Buzzfeed News research, there are as many as 200,000 adult guardianship cases filed each year in the U.S. The number of people under guardianship has tripled in recent decades. I am not saying that guardianship is never appropriate, but families need to be given alternatives, and those placed under guardianships need to be given a pathway to more independence, if appropriate. People with disabilities are real people.
Terri Hancharick is an advocate and board president of EPIC Delaware.
