As the candles go out and the cake is reduced to crumbs, some discover that they may be proud parents, but they are no longer welcome at their son’s doctor appointment, can no longer discuss their daughter’s medications with the insurance company or manage their kid’s finances.
While some arrive on that day well-equipped with the proper legal documents to manage the future, attorney Michelle Kenney says she’s seen too many moms and dads who don’t and then struggle to determine their next steps.
That’s why Kenney decided to work with the Florida Justice Technology Center to develop a website that guides parents of children with intellectual and developmental disabilities through their options, which include guardianship, guardian advocacy and estate planning. The goal for Turning18.org is to help parents decide which option is best based on their children’s abilities.
The topic is dear to Kenney who grew up alongside a younger brother with a developmental disability.
“I’ve been in the guardianship community for nearly 20 years,” Kenney said. She worked as a legal assistant and had a nonprofit that was providing guardian training and legal resources to people in Broward and Palm Beach counties.
Then Kenney decided law school was the next logical step. “All the excuses I had colleagues kept shooting down,” says the 48-year-old who earned that degree in 2016.
As a lawyer, Kenney was prohibited by Bar rules from offering those legal resources at the nonprofit so she closed shop and sought somewhere to redirect the money and effort. She said the website concept was born in a brainstorming session with the FJTC, a non-profit aimed at creating online legal tools for the state’s vulnerable populations.
“Parents don’t always appreciate that once (their children) are 18, being mom and dad is no longer good enough,” Kenney said.
The Q&A style of the site is intended to be akin to an interview to make sure parents don’t miss an option or skip a step on the path to helping manage their child’s future, while allowing the young adult to retain as many rights as they can safely wield, Kenney said.
The FJCT modeled the website on another recent effort - a site called Florida Name Change that walked transgender Floridians through the process of changing their names and update their gender markers on legal documents, said Turning18′s developer, Brandon Thomas.
Turning18.org launched in the fall and includes various forms parents can use to proceed.
The challenges parents face as their children become legal adults are not limited to those whose children are disabled.
It is wise for all parents to plan with their teenagers for the day when the parents don’t have the same legal authority over their children’s lives, said Mitchell Kitroser, a local attorney who routinely guides his clients through the process of acquiring power of attorney and the appointment of a health care surrogate.
“It’s just basic emergency planning. Anyone over the age of 18 ought to have it,” said Kitroser, who had not yet visited the Turning18 site.
But for the disabled child who isn’t able to plan larger aspects of life, planning is crucial.
“For some families, what I found is that there’s a lot of either misinformation or well-meaning friends or advisers who say, ‘Just go do this or that,’” Kenney said. “Then someone calls my office: I’m told I need to do a guardianship because my son has autism. I say, ‘Tell me why.’ The diagnosis doesn’t tell me much. Because someone told them to go do this, they aren’t thinking about whether this is what they need or what their options are.”
Kenney hopes the website will prove to be a better, more accurate resource for those parents - and one that gives parents time to talk over the decisions in the privacy of their own home before seeking an attorney.
“Families get to a point where they’re so overwhelmed with day to day care, they’re almost immobilized when someone puts something else on their plate,” she said. “But I’d never want someone to have to do this in a crisis.”
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Guardianship? Website launched for parents of disabled children headed for adulthood
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