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A disabled teen on a long waiting list said lawmakers need to recast FL’s legislative priorities

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A disabled teen on a long waiting list said lawmakers need to recast FL’s legislative priorities

Sep 12, 2023 | 7:03 pm ET
By Mitch Perry
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A disabled teen on a long waiting list said lawmakers need to recast FL’s legislative priorities
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Alison Holmes and her son, JJ, at the Hillsborough County Legislative delegation meeting in Tampa on Sept. 12, 2023 (photo credit: Mitch Perry)

At a legislative meeting in Tampa on Tuesday, state lawmakers were called upon by several members of the public to do more in the field of health care access. That included 19-year-old JJ Holmes, who has cerebral palsy.

Speaking through a keyboard that he controls by using his nose to type, JJ informed the group of state lawmakers that he has been on a waiting list in the state’s home-and community-based Medicaid waiver program for people with intellectual and developmental disabilities for over 16 years now.

“Back when Jeb Bush was governor, he fully funded the waiver,” JJ said. “He actually cared about what happened to people like me. But nowadays, Florida has forgotten about us.” (Bush was governor from Jan. 5, 1999 to Jan. 2, 2007.)

There are more than 22,000 individuals waiting for such waiver services in Florida, according to the Agency for Persons with Disabilities.

JJ then said that the Florida Legislature’s priorities are out of order, in part because of Gov. Ron DeSantis’ decision last December to provide toll road relief to frequent commuters. “The program provides frequent commuters with 35 or more toll transactions per month with a 50% credit to their account. This program is expected to save the average commuter nearly $480 over the year and save Florida families a total of $500 million,” according to the governor’s office.

“That money could have cleared the waiting list for people with disabilities,” JJ said. “I come here today to ask you: why did you decide toll road users needed your help, more than someone like me?”

The discussion on Tuesday came as the Florida House of Representatives is poised to kick off their first legislative committee week ahead of next year’s 2024 session which convenes in Tallahassee on January 9. Legislative delegation meetings have been taking place across the state in September and the Hillsborough County legislative delegation meeting was in Tampa on Tuesday.

JJ’s mother, Alison, also addressed the group of lawmakers. She serves as JJ’s full-time caretaker and said that it was challenging to address the lawmakers because she had a lot to say and (like all of the other public speakers) had only 90 seconds to make her point.

“I have 90 seconds to implore you not to force my severely disabled son, JJ into a state-run institution,” she said. “Ninety seconds to try to convince you that Florida should fund disability services for the thousands and thousands of disabled Floridians — including JJ – who are on the Medicaid waiver waitlist. Ninety seconds to tell you that no one should be made to wait almost 17 years for disability services, but JJ has. And that length of time is not unusual.”

Alison has gone before members of the Legislature for years, calling on them to increase funding for the state’s Medicaid waiver program for disabled people. Medicaid waivers are for people with disabilities and chronic health conditions.

“I really don’t know what I can say to you in 90 seconds to try to change your minds, and maybe try to touch your hearts as well. But I do know if it was your child, or your spouse, or your parent, you wouldn’t want them to be treated in this way,” she added.

After she concluded her remarks, Hillsborough and Pinellas County-based House Democrat Michele Rayner thanked both mother and child for their continued advocacy efforts.

“Even when I was just a representative-elect, you reached out to me, and I see you come to Tallahassee year-after-year, committee week after committee week, and your pleas fall on deaf ears,” Rayner said.

“But I can assure you there are people in this delegation that your pleas have not been falling on deaf ears…hopefully we can have folks with political will to make sure that you and JJ and so many others have what they need because once again, it’s a human right. But I just want to thank you so much for just your consistency and your advocacy, and just never giving up, even when people tell you look at you in your face and tell you no.”