Providing ‘TLC’ for Marion County’s special needs population

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Posted December 3, 2021 | Sadie Fitzpatrick
Columnist

Editor’s Note: Sadie Fitzpatrick uses this space to explore the character and quirks that make Ocala uniquely wonderful and occasionally irksome

It’s impossible not to be charmed by Kyle Carnes.

With his auburn hair, shining eyes and near-constant grin, he immediately captures your attention. He peppers you with questions—What’s your favorite food? What music do you like to listen to? Carnes is genuinely interested in everything you have to say.

Ten years ago, it was uncertain whether Carnes would be able to ask questions again. He suffered a brain aneurysm at age 12, leading to a stroke that caused cognitive and motor disabilities. He is wheelchair-bound but can walk with assistance.

Throughout his many surgeries, rehabilitations and therapies, his family has been by his side. Carnes is the oldest of three children with a younger brother and sister. His mother and father, Vanessa and Robert Carnes, serve as his primary caregivers.

When his parents brought him home from the hospital after his aneurysm, “We didn’t know what to expect going forward. We homeschooled him for sixth grade because we weren’t sure how he would do in a school setting. We wanted him to get back to some sense of normalcy, so he started at Hillcrest for half days to see how he would handle it,” explained Mrs. Carnes.

Carnes thrived and soon went to full time at Hillcrest School, which is operated by the Marion County School Board, where he received speech and physical therapies. He graduated from Hillcrest at age 21 but stayed in the program until he was 22 and “aged out.” Federal law mandates that educational assistance for individuals with special needs ends at age 22.

The Carnes family wanted Kyle to continue attending a program that would allow him to socialize and learn new skills. Through word-of-mouth, they learned of the Transitions Life Center (TLC), which is dedicated “to providing a safe, caring and enriching community for adults with intellectual and developmental disabilities.” Carnes started immediately at TLC and has attended three days a week for the last year.

Transitions Life Center was created for special needs adults who have “aged out” of educational programs for those with intellectual or developmental disabilities. Its founders realized that without continued socializing and learning of important life skills, many of these individuals will regress.

TLC ensures each of its members has an engaging, safe space in which to learn and socialize. The organization’s THRIVE program (Teamwork, Honor, Respect, Independence, Values, Education) provides support, education and opportunities for its members. TLC members range in age from 23 to 65 years old.

At TLC, members are encouraged to take part in a variety of classes and experiences such as gardening, cooking, crafts (they make Christmas ornaments and cards to sell during the holidays), computers and life skills (such as how to load and wash laundry).

“All our members have a purpose, have dreams, want to live an active life. They should get the ability to have choices about what they want to do (what to learn, where to work, where to live). TLC is focused on providing those choices; there’s no need for just one mold. Each member is unique, they should be treated as such and we know that not one set of circumstances is the same,” explained Lucy Johnson, executive director of TLC.

Some funding for individuals with special needs is provided by the state through the Florida Med Waiver Program. This waiver is designed to help adults with permanent disabilities. It provides funds for medically-necessary supports and services.

The current waiting list for this waiver is more than 22,000 people long. Many families spend years on this waiting list before receiving any financial assistance.

The Carnes family has been on the waiting list for more than a year. To apply for this waiver, they were asked to provide detailed medical records regarding Kyle’s condition, what medications he is on, what therapies he receives and what he does at TLC. They also completed a home visit, a school visit, submitted guardianship and emergency plan forms, IRS forms and more.

Mrs. Carnes views these hurdles as just another part of her role as Kyle’s advocate. She believes strongly, however, that there should be more awareness in terms of helping individuals with special needs in Marion County.

“When you see us out with Kyle, it’s okay if you ask what happened, but I want you to treat Kyle like the person he is. Look him in the eye, say hello, ask him questions. It doesn’t faze us and we don’t want sympathy, but we want people to be more aware,” she said.

In addition to better awareness, Johnson and Carnes both noted the urgent need for a central place in Marion County where individuals and families with special needs can access information and resources. This would be one central hub to get connected to services for therapy, for navigating the paperwork for the state and federal assistance programs, workforce connections and materials.

Mrs. Carnes said she only learned about the Medicaid waiver, TLC and other resources because of Google searches or by word-of-mouth.

“There are cancer societies, heart associations and more groups to connect those who need assistance, but nothing like that exists in Marion County for families with individuals with intellectual and developmental disabilities. It’s time we as a county provide that for these families,” Johnson said.

In the meantime, if you see Kyle Carnes around town, stop and talk to him. I promise you’ll come away with new music recommendations, a changed perspective on life and a huge smile on your face.

To learn more about Transitions Life Center, please visit www.tlcocala.org.