Jennifer Tissot has spent years working with special needs children and adults, and her conversations with parents always come back to one question: What happens to my child when I pass away?
As the therapeutic recreation coordinator with the City of Charleston’s Recreation Department, Tissot develops programs for those with special needs, everything from athletics and gardening to theater and art. But a key program was missing — one that could prepare young adults to live at least somewhat independently and give parents some peace of mind.
“We needed a life skills program,” Tissot said. “(Those with special needs) have great skills and unique abilities. I wanted to provide a program that teaches them life skills they can take with them every day.”
This summer Tissot launched a six-week pilot program called Beyond BASIC (Building Awareness in Supportive Independent Communities), currently a once a week program for six special needs young adults. Participants develop skills in five key areas: social skills, health awareness, independent living skills, increased self-esteem and personal areas of interest. During the course of the program, participants learn about nutrition, how to introduce themselves and shake hands, doing laundry, money management and using public transportation.
Every moment is a learning opportunity and a chance for the participants to hone their problem-solving skills. One day a hole punch fell off the table and little circles of white paper scattered. While most people would instinctively know to pick up the papers or grab a broom, Tissot asked the students to think through what had happened and the next steps.
Children with special needs are often accustomed to everyone stepping in to solve their problems. But Tissot realizes a parent or teacher might not always be there, so they need to learn how to solve problems on their own.
Those skills can then translate into a job setting. Most special needs adults are limited to taking jobs at minimum wage that are often basic and routine. Imagine folding T-shirts all day for minimum wage, Tissot said.
“There’s such a stigma still attached to special needs people that they need so much supervision,” she said. “That’s not the case. If you give them more opportunities, they really shine.”
Finding the right fit
Holly Annibale’s daughter Michelle went through the Beyond BASIC program over the summer. Holly praised the program for its focus on real life skills and problem solving. Those just weren’t part of Michelle’s school curriculum as a special needs student like they needed to be, Annibale said.
Michelle, who will be 25 in December, has Down syndrome and she’s bipolar with autistic behavior traits. Unlike most people with Down syndrome, Michelle doesn’t like to be touched. She is extreme in her preference for routine and order, Annibale said.
Michelle’s journey through the school system and now into adulthood has been complicated and frustrating, her mother said.
She went through a series of schools, trying to find the best fit for her combination of special needs.
“You get so tired of schools, so tired of the fight,” Annibale said. “As a family with disabilities ... It’s unbelievable what you have to fight for.”
When Michelle was in high school, she was placed in a special art program. Of the 10 students in the class, five of them had special needs. Together they all learned the art of batik, a technique of wax-resist dyeing applied to cloth.
Annibale said that program changed Michelle’s life. “People were like, ‘What did you do to Michelle?’ ”
She attributed the dramatic transformation in Michelle’s behavior to the lack of confinement in the art class and the chance to express her humor and outside-of-the-box way of thinking, Annibale said.
“I don’t know if you’d given it to her four year earlier (if) she would have been ready,” Annibale said. “Finally, it was at the right time with the right people.”
No breaks in caregiving
Like all special needs students, Michelle was able to attend school until age 21. After that, the burden falls back on the parents to help their children find employment, specialized programs and to reinforce those life skills that others simply pick up over time.
Michelle works at Delicious Delights, a West Ashley bakery that employs special needs adults through the Disabilities Board of Charleston County. She works four hours a day, making 50 cents an hour.
That leaves Annibale and her husband filling those other hours with activities like Special Olympics and therapeutic horseback riding. And their parenting duties are never-ending.
“If you’re not constantly working on life skills with them, you’re losing it,” Annibale said. “I feel like I criticize Michelle all the time – brush your teeth, shave your legs. It’s very, very wearing. I wouldn’t change it, but it’s extremely wearing.”
Most parents see a light at the end of the constant care tunnel. They know their children will grow to be more independent, eventually going off to college and living on their own. But parents of children with special needs, especially those with more severe challenges, don’t have that. They aren’t just parents forever, but are forever parenting.
“I can’t look forward to that break because there never will be one,” Annibale said.
A drop in support services
From the moment a child is diagnosed with a special needs condition, he or she enters a highly structured environment. From birth to age 3, there’s BabyNet to assist with a variety of therapies. At age 4, the child typically transitions to the public school system where a team of educators works with parents to create a customized, goal-oriented learning program.
While school systems are adding more transitional programs for teenagers with special needs, there’s more work to do. Kathy Kiniry, a consultant who helps public and charter schools launch special education programs, said special needs students need more “soft skills” training.
Parents should start thinking about the future when the child is in eighth grade, Kiniry said. If possible, help them find a summer job. If college is a possibility, start exploring schools with programs for special needs students.
Give them opportunities to practice life skills and be independent. Walmart won’t heat up their lunch for them or separate them from a co-worker they don’t like, Kiniry said.
If parents wait until their child reaches age 21, they’ll be shocked when they realize that the intense level of support to which they’d grown accustomed has disappeared.
Planning for what’s next
That’s why more than 15 years ago Mary and Winn Tutterow co-founded Healing Farms as a way to provide skills and purpose to young adults with special needs as they transitioned out of the school setting.
Their own adult daughter, 23-year-old Mary Addison, has a severe seizure disorder. With both mental and physical limitations, she requires constant care.
“There is an abyss after high school,” Mary Tutterow said. “The system has taught parents that the only option out of high school is work. But many kids can’t work full time, so there are these unrealistic expectations,” said Tutterow, who also wrote a faith-based course called “The Heart of the Caregiver.”
At Healing Farms in West Ashley, participants learn skills in an urban farm setting. The program uses a social enterprise initiative, making and selling salsa. Participants grow many of the salsa ingredients and package the orders for sale and shipping.
Funded by donations and salsa sales, Healing Farms is open only three days week. There are eight participants, but Tron Severe, community life director, is hopeful the program will be able to expand to serve more families. This year, Healing Farms offered a summer camp open to participants ages 17 and older to introduce families to its program and get them thinking about what comes after high school.
A former high school special education teacher, Severe knows that parents of special needs children are so busy simply surviving the day to day, they aren’t looking down the road to what their adult child will do.
“We want parents to start thinking about what’s next,” he said.
Healing Farms also recognizes that everyone, including those with special needs, have their own talents and unique gifts. The program tries to develop those talents and discover how they might translate into a job, Severe said.
“We’re always looking for businesses that will allow us to come in and see what it’s all about,” he said. “What we hope is that while we’re out in the community volunteering or working on life skills, we’ll build those relationships. We want (the community) to start to see our participants in a different light.
“The first thing people see is the disability,” he added. “We want people to look past that to see the things they can do.”
Putting people to work
Rick Magner, executive director of Disabilities Board of Charleston County, said he’s found many local businesses are very open to hiring employees with disabilities. Through the disabilities board, individuals have the opportunity to work with a job coach to review possible positions and learn how to fill out a job application and select proper attire. A staff member accompanies individuals to their jobs, including work at hotels, grocery stores and fast food restaurants.
Magner said companies like the Medical University of South Carolina, The Urban Electric Co. and Cummins Turbo Technologies all work with the disabilities board.
Center-based programs hire workers for assembly, packaging, labeling, bulk mailing and other contract work for local businesses in a supervised environment. These jobs pay less than minimum wage. If individuals with disabilities earn a higher income, they could lose their Medicaid eligibility, Magner noted.
While these can be good options for parents and their adult children, the waiting list is long for programs in Charleston County and around the state. Magner said the statewide waiting list has thousands of people on it. Progress is being made to shorten the wait, he said, noting that Gov. Nikki Haley made an aggressive effort to move South Carolinians with special needs off such waiting lists.
Over the last two years, more than 2,000 people around the state have moved off the waiting list or are about to move off the list, Magner noted.
But more people come on the list every day, so Magner urges parents to put their child on the waiting list as soon as possible. They can be added at any age.
He also suggests parents help their child seek out employment on their own. They don’t have to wait for assistance from the disabilities board.
“Businesses are good about hiring people with disabilities,” he said. “Reach out. If your child is qualified, go and apply and see if somebody will hire them.”
This means, though, that a continued burden falls on parents who have already spent two decades coping with the demands of parenting a child with special needs. For these families, programs like Beyond BASIC at the city’s Recreation Department can be a lifesaver.
Currently $168 for the six-week program, Tissot is planning to expand services next year. She’ll hire a second facilitator and grow beyond just one day a week. She also wants to offer the program for free and is looking for businesses to support program scholarships.
Tissot has made it her personal charge to bring life skills training to people with special needs.
“It’s more than just a job, it’s a way of life,” she said. “I wouldn’t want to do anything else in the world. Once I realized the severity of the issue, it became my mission.”