A day in the life of a teenager who is part of an invisible population
Kelly Brown/Elly Photography
On a school day, Madison Turner’s parents wake her up at 6 a.m. Nearing the end of her sophomore year at Memorial High School, Madison loves school. Waking up and putting on her school uniform, however, Madison loves less.
Her father, Michael Turner, talks about his family’s morning routine with the same head-shaking and exhausted smile of all parents of teenagers. “It’s crazy,” he says over his second cup of coffee. “The mornings only work if we stay within routine.”
After a smoothie breakfast, Madison and her 12-year-old sister Megan are driven to school by their mother Lisa Turner, who works at Mental Health Association Oklahoma. As she heads into Ms. Jenny Joy’s classroom Madison is greeted by her fellow classmates.
In 2001, Michael and Lisa were expecting their first daughter. Thirty-one weeks into an otherwise uneventful pregnancy, Lisa had extreme back pain. Madison was born nine weeks early with her umbilical cord wrapped around her neck. She was not breathing. Michael and Lisa waited a few agonizing minutes before hearing a “soft, faint squeak” and seeing Madison rushed to the Neonatal Intensive Care Unit. It was four weeks before they could take their daughter home.
Over the next several months, they recognized Madison was not meeting growth and development markers. In early 2002, when Madison was 9 months old, she was diagnosed with cerebral palsy resulting from her traumatic birth. Michael says the diagnosis “sucked the air out of our lungs.”
The Mayo Clinic defines cerebral palsy as “a disorder of movement, muscle tone or posture that is caused by damage to the immature, developing brain, most often before birth.” The condition manifests on a wide-ranging scale. For some, a cerebral palsy diagnosis is not associated with intellectual disabilities. But others, like Madison, suffer from related cognitive impairments.
By the time Madison was 6 years old, her parents had received additional diagnoses of autism, epilepsy, intellectual disabilities and a speech communication disorder. Thanks to guidance from their physical therapist, Julie Wilson, the Turners applied for the In-Home Support Waiver through the Developmental Disabilities Services Division of the Oklahoma Department of Human Services (DHS) when Madison was a baby.
When a person is selected from the waiting list, they receive financial support to help pay for supplies related to an intellectual disability diagnosis, such as diapers, formula and adaptive equipment. These services are funded through Medicaid Home and Community Based Services, waivers and state funds. Services provide for assistance for individuals to live safely at home rather than being placed in a nursing home.
At the time the Turners initially applied, Michael says a family would typically wait seven or eight years to receive support through the Developmental Disabilities Services Division (DDSD) of Oklahoma DHS. As of December 2016, DDSD was reviewing applications dated from 2006. In March 2017, 7,501 Oklahomans were waiting to receive this financial support. If a person applied to the waiting list today, they would likely wait at least 10 years.
Eventually, Madison was approved to receive support that provided significant relief to the Turner family budget. But then Michael was offered a job in Texas, and the family relocated.
“We got our services in Texas in a snap,” Michael remembers. But being so far away from the support of extended family, including Michael’s mother, who is a retired speech pathologist and has worked with Madison since her birth, became too great a burden on the family of four. The Turners returned to Oklahoma but were refused the services they had received before relocating. They signed up again, at the bottom of the waiting list.
At the time, Michael and Lisa both worked in education. Money was tight. They reached out to their State House Representative Jeannie McDaniel for help. “(Rep. McDaniel) was very in-touch with our needs,” Lisa says. “She believed that adequately funding the waiting list needed to be a priority.”
McDaniel has since termed out of office, but one of her last acts in the Oklahoma House was to sponsor a bill that financed disability expenses and provided tax-sheltered savings options for parents of children with disabilities. House Bill 2821 was signed into law in 2016.
The Turners call this support a blessing, but they still face the costs of adaptive equipment, nutritional supplements, and necessary safety and accessibility modifications to their house.
They are still on the waiting list.
At 16 years old, Madison is tall, with thick brown hair and an enviably clear complexion for a teenager. She usually says only one word at a time from her modest vocabulary. Most often, she repeats one of her favorite words, “happy.” She alternates between walking and sitting in her adaptive wheelchair. She generally wants to participate in whatever her sister is doing.
Megan calls Madison a “greeter.” She thrives when she’s around people (unique for someone on the autism scale), likes for other people to shake hands or hug each other, and laughs when she hears a sneeze.
When Madison was a toddler, the Turners were told she would never be able to walk. They attribute her ability to overcome that particular diagnosis to Bit By Bit, a therapeutic horse riding center for people with special needs in Oologah. Michael says the core strength and psychological courage she gained from horseback riding have carried her to new heights. She continues to ride every week and lights up around horses.
Like many parents of teenagers, the Turners look toward high school graduation with some anxiety. Students like Madison can stay in school until their 21st birthday. But after her students graduate, Ms. Joy says many of them end up staying at home. Michael says this is “due to lack of financial resources and very few opportunities for employment, recreation or opportunity to live with peers.”
The ripple effect of an adult child with disabilities living permanently at home, with few prospects for outside interaction, is predictably trying for caregivers. The Turners worry that for many parents, high school graduation means the “beginning of a downward spiral when a caregiver is required to remain at home, leading to isolation, mental and physical health challenges, limited financial options and burnout.”
Since Madison’s diagnosis, this fear of the unknown has become a common element of the Turners’ lives. A few years ago, they founded Project Special Courage, a nonprofit to educate others and advocate for families like theirs.
Michael, a veteran of the U.S. Marines and a former administrator in higher education, spends his days in a small downtown office on Greenwood Avenue. As the executive director of Project Special Courage, he helps families navigate the support systems available to people with intellectual disabilities, acquire adaptive equipment and provide recreational opportunities like disability-friendly kayaking, swimming and hiking. He also works toward long-term systems change at the state level.
Meanwhile, in order to address the need of child care for individuals with special needs during the summer, Lisa works with Ms. Joy, Tulsa Public Schools and the Center for Individuals with Physical Challenges to organize transportation and facilities for an extended summer program for the students in Madison’s class.
All of these additional responsibilities take a toll on the marriages, other children, finances and physical wellbeing of caregivers. “Until you experience life under our roof,” Lisa says, “it’s hard to understand how consuming it can be.”
Meanwhile, in Ms. Joy’s classroom, Madison is holding hands with her peer tutor. It’s mid-morning, and the 11 special-needs students, one teacher, four para-professionals and two peer tutors form a circle for an innovation of Ms. Joy’s: Joy Chi. The modified tai chi exercises allow students to focus on intentional movement and breathing — a pause from their busy day of life skills-centered learning.
After school, Madison goes home. She eats a snack, watches TV, plays with her sister and her dog, Linus, and loves to eat dinner on the couch. Sometimes, Linus stays with Madison on her bed until she falls asleep.
Michael describes life as a roller coaster for parents of children with disabilities. “Except on this ride, you can’t see what’s coming,” he says. “Sometimes, when you hit the bottom, it’s like everything stops. There’s no operator. You are strapped in. You don’t know what to do.”
One of the Turners’ goals in founding Project Special Courage was to shed light on their own personal roller coaster.
“Our population is often invisible,” he says. “If you don’t know someone with an intellectual disability, you don’t think about it. So they disappear. And their parents disappear.”
And that handicaps all of us.
How to be an advocate
• Volunteer through Project Special Courage: specialcourage.org
• Apply for the “Partners in Policymaking” nine-month course through Oklahoma Developmental Disabilities Council: okddc.ok.gov/partners_in_policymaking.html
• Contact your state representative to express support for adequate funding of the Waiver Request Waiting List.