Tuesday, August 14, 2018
Education

For families of special needs students, graduation brings a fresh set of concerns

PINELLAS PARK — Sweet, artistic, determined. These are the words Helen Heaney uses to describe her daughter, Kelly.

At 22, Kelly struggles to form words, so she relies on a Magna Doodle drawing board to communicate. She can't stand the feel of anything dense or rough in her mouth, so all of her food must be pureed. She's sensitive to light, so trips to the grocery store often end in meltdowns.

But during the long months when her father was recovering from back surgery, and more recently from throat cancer, Kelly sat patiently by his bedside. She draws in pen and ink. She rides horses on Saturday mornings at Horses for Handicapped Pinellas, and attends a weekly Bible study.

Life for Heaney and her husband, Ken Krohel, has seesawed between challenge and joy since Kelly was diagnosed with autism at age 2, although even before the diagnosis, they knew something was different. Kelly rarely made eye contact. She didn't smile or show signs of joy. She remained unusually quiet.

When it was time for her to go to school, they hoped she would thrive in a general education setting but realized by the time she was 10 that she needed more services. They enrolled her at Nina Harris Exceptional Student Education Center, a school in Pinellas Park for students 3 to 22 years old with physical and intellectual disabilities and those on the autism spectrum. After 11 years there, Kelly graduated on May 23.

Now, as Kelly stands at the threshold of life after high school, her parents are facing brand new challenges. They know that unlike other graduates, Kelly will never be able to live on her own. She'll never drive a car. She may never have a job.

But they refuse to dwell on what won't happen for their daughter.

"You just don't know," Heaney said. "You never give up hope."

• • •

The odds are not in Kelly's favor, though they've improved a bit in recent years.

None of the 26 graduates in Nina Harris' Class of 2017 have jobs. Some will be attending adult day care centers. Others will stay at home with their families, in some cases requiring a parent to leave a job to become a full-time caregiver.

Statistics from the Florida Department of Education indicate that this scenario is the norm for many families of special needs students following high school graduation.

Of the disabled youth who left Florida public schools in 2013-14, the most recent year for which data is available, the DOE found only 19 percent attending college six months later. Another 15 percent were competitively employed.

All told, 56 percent either were enrolled in college or some other postsecondary education or training program or were employed in any capacity, competitive or not. That was a 6 percentage-point increase over the previous two years.

Jane Golding, director of exceptional student education for Pinellas County Schools, said the district watches those figures closely and is encouraged by what it sees as an upward trend.

Much of that success, Golding said, is the result of careful, collaborative planning by the Pinellas school district and the family. It begins when the student turns 14, to ensure the best post-graduation outcome — and to find ways to pay for those outcomes after the public school system no longer is financially responsible.

"All parents of students leaving high school take a deep breath at that moment, but the breath that parents of disabled students take is very different," Golding said.

"It's a hard journey they'll be on for the rest of their lives."

• • •

Three years ago, Heaney and Krohel began planning for Kelly's next step. Their first priority was to find a safe adult day care center that might spark her interest in art. They settled on PARC in St. Petersburg, which offers a program called Inspired Artists Studio.

Kelly's attendance at PARC five days a week, combined with her speech therapy and personal care expenses, will total about $120,000 a year. The cost would be prohibitive without a Medicaid waiver, said Heaney, who works as an exceptional student education assistant at Nina Harris.

She and Krohel are grateful that Kelly is on track to receive state funding at a time when 20,536 Floridians are on the waiting list for a waiver, 440 of whom are young people with disabilities who have aged out of the public school system. But they have other worries.

Like many people with autism, Kelly becomes agitated when her routine changes. Krohel says they have tried to prepare her for life beyond the protective cocoon of Nina Harris, but they don't know what will happen when they drop her off at PARC for the first time later this month.

"It's hard to say if she understands what's happening," he said. "She's used to being out of school for the summer, but I don't think she realizes she won't be going back in the fall."

Heaney has other worries. What if someone in Kelly's program doesn't like her? What if someone doesn't treat her with the respect she deserves?

And this: What if the state were to cut back on services to the disabled?

• • •

Susan Kabot, chairwoman of the Florida Developmental Disabilities Council, worries about that as well. Proposed changes to health care could have dire consequences for people with intellectual and developmental disabilities who rely on Medicaid, not only for health care but for services and support that allow them to remain in their homes and communities, she said.

Waiting lists could become longer, and those already approved for a waiver could find out that their services have been cut, Kabot said. For example, a family could suddenly learn that the adult day care it depends on is being reduced from five days a week to three.

The only challenge more daunting than funding, Kabot said, is figuring out what services are available and how to get them.

The difficulty is greater for those with more needs, such as students leaving Florida public schools who don't fall within the 56 percent capable of continuing their education or landing a job.

"That 44 percent will look very different," Kabot said. "In that group are the more severely disabled individuals, as well as those who could do more if their families had the knowledge and the ability to advocate for them."

• • •

Graduation at Nina Harris was emotional this year. It always is.

Young people with moderate to severe disabilities, clad in royal blue gowns, occupied the first two rows in the space normally used as the school cafeteria. Some smiled for family photos. Others needed an aide to help them remain upright.

A high point of the evening: the traditional slide show showing each student's journey through the school.

Heaney brushed away a tear, gazing at larger-than-life images of Kelly as a child standing in a pumpkin patch, as a teenager on a sunlit beach, as a young woman intensely focused on a pen-and-ink drawing. Krohel sat as tall as he could in his electric scooter, straining to see over the people in front of him.

When the ceremony was over, the two surged forward with the other families, all of them eager to congratulate their graduates. Reaching Kelly, they touched her gently, enclosed her in their arms, and exhaled.

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