Guidance offered for parents of teens with special needs
AT A CLINIC ORGANIZED BY JACKSONVILLE AREA LEGAL AID , clients Dekeisha Murray and her son, Keoki, talk with pro bono attorneys Angela Viltro, Lisa DiFranza, and Stacie Morales about the legal options to prepare Keoki for turning 18. JALA introduced the Murrays and other families to www.Turning18.org , a resource developed by the Florida Justice Technology Center for families of teenagers with intellectual and developmental disabilities.
Turning 18 is a milestone many teenagers and their parents look forward to, but for parents of children who can’t function as fully independent adults, it can be a frightening time as they face losing the legal right to make important decisions for their adult children.
That’s why attorney Michelle Kenney and her firm, GAPS Legal, PLLC, partnered with the Florida Justice Technology Center (FJTC) to create an online guide, www.Turning18.org, to provide families with information about their legal options as their children with autism, cerebral palsy, Down syndrome, and other intellectual and developmental disabilities reach the legal age of adulthood. FJTC is funded by The Florida Bar Foundation in partnership with The Florida Bar
Each year, nearly 58,000 Florida children with developmental disabilities turn 18, at which point their parents can no longer legally make medical, educational, and other life decisions for them.
“What happens in the community is that sometimes a friend of a friend just says, ‘Go do this,’ but I wanted to make sure families clearly understood that there is more than one option,” Kenney said. “I wanted them to make an educated decision on the best option for their child, for their circumstances, not a one-size-fits-all.”
Kenney, past president of the Center for Guardianship Certification and the Florida State Guardianship Association, previously served as the executive director and a professional guardian for a nonprofit corporate guardianship program where she administered more than 100 guardianships and monitored agency operations to ensure quality care for her clients and their families.
She’s seen many cases of families choosing guardianship, the most restrictive of the legal options available, because of a lack of understanding of the two other primary options: guardian advocacy and estate planning.
Guardian advocacy is an option for those adults with developmental disabilities who do not need decision-making help in all areas of their lives, while estate planning is appropriate for adults with developmental disabilities who are capable of making an informed decision to sign estate planning documents and grant certain decision-making rights.
“Turning18.org walks users through their legal options step-by-step so they can identify the option best suited to their soon-to-be adult child,” said Brandon Thomas, FJTC’s website developer on the project. “We designed it to be similar to a guided, in-person interview.”
The site then directs users to resources including the local Clerk of Court and the , where they can find local legal aid organizations, The Florida Bar’s Lawyer Referral Service, and other legal services options.
Michelle Fonseca, a Central Florida mother of a teenage daughter with autism, recently completed the guardian advocacy process for her daughter.
“It’s scary. When you have a child with a disability you look at certain milestones and think, ‘What am I going to do when this happens?’” Fonseca said. “Having a website like this makes it so simple and helps you understand the process: Do I do A, or do I do B? I wish I’d had this resource.”
Kenney, who is also a member of the FJTC board, said that whether or not the parent intends to hire an attorney, the important thing is for them to go into the process being as informed as possible, and that they determine the best path by the time their child is 17 and a half.
“The fourth option, which is one that plenty of families choose, is to do nothing,” Kenney said. “They choose to bury their heads in the sand, and they don’t act until someone tells them ‘no.’ That ‘no’ could come when they switch doctors or change insurance. Something triggers it, and then they’re having to scramble in crisis-mode. It’s much better to be proactive and plan ahead. And that’s exactly what we are trying to enable with Turning18.org.”
To reach more families who can benefit from Turning18.org, FJTC invites social services agencies, educational institutions, and civil legal aid, health-care and other nonprofit organizations to partner on outreach efforts. Agencies can share the Turning18.org link on their online resource pages and in informational sessions and other communications, as well as co-host training sessions for staff and volunteers.