POSTED: 1:30 a.m. HST, Dec 15, 2010
LAST UPDATED: 8:50 a.m. HST, Dec 15, 2010
The special-needs student whose name is synonymous with a monumental chapter of change for special education in Hawaii turned 37 this year: Jennifer Felix is middle-aged.
And her troubled transition from high school to adulthood, her years in mainland institutions and hospitals, her difficult road to independence -- studded with pitfalls -- illustrate, say advocates, that the needs of individuals with disabilities don't end at 18.
Her story also shows that with the right help, special-needs people can overcome incredible obstacles: Felix struggled after high school, but her story has a good ending.
Today, Felix is living on Maui, in a home owned by her parents, where she has three full-time aides with her 24 hours a day. She is stable, has friends and enjoys a busy social life.
Her mother, Frankie Servetti-Coleman, said she still can't believe how far Felix has come. "We would never have thought that Jenny would be in the condition she is today," she said. "It's a miracle that she can have parties, go shopping, go to the beach.
"It is a miracle that she's happy."
Felix was born in California in 1973, the second of three children.
As an infant, she was stricken with a virus that left her suffering from seizures and severely developmentally delayed. In school and for much of her adult life, she exhibited erratic, sometimes violent behavior. Her mother said Felix would run away for no reason, would hit herself repeatedly against walls or floor, would violently push and hit people.
On Maui, there was a dearth of services available for Felix.
After years of trying to get more help, the family sued.
In 1993, her attorneys went on to file a class-action lawsuit for special-education children in Hawaii. A year later, the state agreed to a consent decree that would spur the biggest reforms ever for special education in Hawaii and cost the state $1 billion.
Those improvements came too late for Felix. And her family never saw any settlement money. Instead, the Department of Education agreed to send Felix to the mainland, because services for her weren't available in Hawaii. After she aged out of school, Medicaid began covering her treatment, which included placement in several institutions.
Her mother said Felix continued to degrade in those facilities.
For years, Felix and her family were in a state of limbo.
Then in 2005, her family, with the help of their attorney Eric Seitz (who filed the original Felix case), fought for the state to send Felix to a "last chance" program at the Kennedy Krieger Institute's neurobehavioral unit in Baltimore, meant for individuals with developmental disabilities who are self-injurious or display other severe behaviors. Felix was there for 18 months.
She lost three teeth and developed boxer's ear from banging her head on the floor. When she returned to Maui, things were better -- for a while.
Then, Felix started reverting to her aggressive behaviors. She destroyed her house, ripping off closet doors and defecating in rooms. It wasn't until a consultant came in and duplicated the Krieger program at Felix's Maui home that she started improving.
She has been stable for two years.
Servetti-Coleman said she does feel very fortunate her daughter is so much better, appears to be happy, is healthy and is getting the most out of life. "She goes to the pool every day. She has yoga on Thursdays, out to lunch on Fridays," Servetti-Coleman said.
But the dedicated mom is also worried -- as she faces an inevitably that parents of children with severe disabilities all grapple with: What will happen to her daughter when she's gone? Felix, she said, will "need services for all her life. It's cradle to grave."