A beacon of hope to parents
By ALAN SCHER ZAGIER, Staff Writer HILLSBOROUGH -- Maybe it was the time three years ago that Alex, now 7, stuck his head through the stair railing at Christmas dinner, launching his uncle on a frantic search for a hacksaw. Or the persistent squalls of sister Adrianne, 5, in place of understandable speech. Or the fear that 3-year-old Christopher would follow in the older ones' path. Some Triangle transplants come for better jobs, or perhaps for a dream house in the country. The Tullys came in search of salvation. Ten months ago they said goodbye to suburban Birmingham, Ala., Steve and Angie's birthplace. They didn't know a soul in North Carolina. But they knew that help awaited. Just as the Triangle attracts hundreds of new residents each week, families with developmentally disabled children are relocating to a region with a growing reputation for cutting-edge research and treatment of mental retardation, autism and other disabilities -- intervention that starts in a child's first days.
After the psychiatrist's warning, Steve and Angie went to the Internet for more information. Two months later, they visited TEACCH classrooms in Chapel Hill and Cabarrus County. Before long, they were settling into an $850-a-month apartment in northern Orange County. "We looked at each other and said, 'We have got to move,' " Angie recalled. Like most young couples, Steve and Angie, both 29 and married for eight years, didn't even consider the possibility of rearing disabled children. Alex, the first child, was in trouble from the start. At birth he contracted a strep infection and spent his first two days of life on a respirator to restore his low oxygen levels. At 2 1/2, a playground virus turned out to be encephalitis, an inflammation of the brain. Complications followed: He was diagnosed with cerebral palsy on his left side; Pervasive Development Disorder, a less severe form of autism; hyperactivity, and mild to moderate mental retardation. While Adrianne's birth was normal, it was soon determined that she had hearing trouble. At 18 months, tests indicated demyelination of the brain, a condition that erodes the protective sheaths insulating nerves. She also was diagnosed as having a seizure disorder, PDD and mild mental retardation. Christopher is still too young for a conclusive diagnosis, but tests suggest significant delays in his speech, language and motor skills. The children's growing needs and their unpredictable behavior caused Angie to quit working. But that meant becoming a near-prisoner of her home. "In Birmingham, we didn't even get to the grocery store," she said. "For their safety, we had to stay in the house."
An Arc worker visited the Tullys the day after their arrival, pointing them to the regional mental health center, family support groups and other resources. Adrianne and Christopher enrolled in the Children's Learning Center, a Hillsborough preschool operated by the Orange-Person-Chatham Area Program, one of the state's 40 regional mental health centers. The centers coordinate mental health services and administer programs for the mentally retarded and drug and alcohol addicts. The preschool serves a combination of disabled and "typical" children -- the preferred term, rather than "normal," used by advocates for people with disabilities. Both children have struggled. Angie and Steve say they are not happy with the attention Christopher is getting. They withdrew Adrianne from the school several months ago when her self-injurious behavior -- slapping her face, pulling her hair -- increased. Alex, meanwhile, attends a special class for autistic children at Grady Brown Elementary School in Hillsborough. The class uses TEACCH methods not only to develop basic skills but also to instill structure -- a vital need in the insular world of change-resistant autistic children. Picture cards guide Alex and his four classmates. There's an illustrated card for washing hands, another for outdoor play, another for lunchtime. The color-coded cards -- Alex's are blue -- fit neatly into a pocket "schedule" kept by each student.
Angie and Steve rave about Alex's school, and they plan to have Adrianne join him there in the fall. They hope to send Christopher to a TEACCH preschool in Chapel Hill. But it's the help at home that has made the biggest difference for the Tullys. Every weekday, an aide spends six to eight hours working one-on-one with Adrianne. Another aide picks up Alex from school and provides six to eight hours of home care. On weekends, Arc respite workers assist with child care. A "family trainer" helps with such mundane matters as meals, grocery shopping, and baths. "My job is to bring order to chaos," said Erica Sharp, who works for Annas Consulting Inc., a Chapel Hill private contractor. Sharp's salary and those of the other two aides are paid by the Community Alternatives Program, a form of Medicaid available to disabled children and adults at risk of institutionalization. It is administered by the regional mental health centers. Alex and Adrianne are eligible to draw $68,000 each annually, the maximum amount allowed. In addition to salaries, the money can go toward orthopedic equipment, diapers, specialized computer software and other needs. Because the services are so expensive, the income-eligibility standards of traditional Medicaid don't apply to CAP. Though the cost may seem high, CAP services are actually less expensive than the alternative, state officials say. In fiscal 1998, an average of $33,668 was spent per recipient, compared with $75,302 for those living in group homes with 24-hour supervision or receiving other institutionalized care.
"It's the prize, the one that everybody is after," he said. About 1,800 families in North Carolina are on the CAP waiting list. But for the Tullys, the severity of the older children's disabilities meant a short wait, Wilson said. Dr. John Baggett, director of the state Division of Mental Health, Developmental Disabilities and Substance Abuse Services, acknowledged that newcomers such as the Tullys can put a squeeze on state and local human-services agencies. But Baggett said he believes the Tullys represent a trickle, not a flood. "It is not a problem that we perceive as widespread. But it's something to keep an eye on." Even so, he said, "It is a major public policy issue," adding that in some states, legislators hesitate to improve services for fear that it could lead to a "rush to their borders." An interstate Medicaid agreement requires states to initially pay the CAP costs of recipients who move elsewhere, but Baggett said the wide range of program quality across the 50 states suggests a need for more stringent federal guidelines. The additional strain on services, though, has been tempered by increased state support. The number of people awarded CAP funding has increased from 3,236 to 5,127 over the past four years, with the total CAP budget growing from $20 million to $134 million. State spending for institutionalized care, by comparison, was $366 million in the most recent fiscal year. The CAP program requires state set-asides: The federal government later reimburses 63 percent of the cost, with the state responsible for 32 percent and local governments covering the rest.
On an average day, more than 40,000 people with developmental disabilities receive some type of state-supported service. While acknowledging that it puts a burden on taxpayers, Baggett said he thinks the state's emergence as a destination for families with certain specialized needs is worth embracing. "I'm proud if North Carolina has the kind of services that people find out about and say, 'That's what we want for our family,' " he said. Financial strainMoney is still tight for the Tullys, even with Medicaid. Steve, a supervisor with a security-alarm company, earns about $35,000 annually, with Social Security kicking in an additional $300 monthly per child.It's enough to make ends meet, but unexpected expenses cause problems. On a recent trip back to Alabama, the Tullys had to rent towing equipment with money set aside for the phone bill; their phone was disconnected until Steve's next payday. With all the outside help, the Tullys' apartment sometimes resembles a crowded bus station. Even when the visitors leave, Adrianne and Christopher's sleep disorders rule out any chance of quiet. When they do sleep, it's often on the couch with Angie, or, in Christopher's case, under the couch. Yet for all the uproar, home is truly a sanctuary. It's a place free of stares, of impatient adults and cruel children whose taunts glance off their targets but stick like swollen ticks to Steve and Angie. Angie rattles off the encounters. The nurses at a pediatrician's office who politely asked the Tullys to wait outside until called (they wound up switching doctors). Or the Durham supermarket that would not allow Christopher and Adrianne into its complimentary baby-sitting area.
Even in the Triangle, with all its resources and generally progressive attitudes about inclusion, many people remain uneasy and uninformed about children with disabilities, Angie says. "We can't seclude the kids," she says. "Can we not take them to the grocery store because they'll throw a tantrum? Other people are just going to have to stare." Sometimes, the people who think they understand are just as bad, Steve says. "They look so normal, it's hard for people sometimes to realize our kids have disabilities," he says. "We've had some parents tell us about Alex, 'Oh, he just needs a spanking.' For awhile, people just said Adrianne will grow out of it. It's not something they're going to grow out of." Just regular kids, sometimesParents know there are certain universal truths to raising kids, disabled or not. Siblings get on one another's nerves. Sweets always taste better just before bedtime. And sometimes children just do and say the darnedest things.So it is with the Tullys. Alex and Adrianne sometimes fight like cats and dogs. They both dote on their little brother. And Steve and Angie celebrate the developmental milestones -- regardless of where they occur. At the Museum of Life and Science in Durham last year, Steve took Alex to the bathroom. To his father's amazement, Alex went to the bathroom for the first time while standing up. It was cause for celebration. "He starts down every row of urinals telling everybody, 'Good job. Give me a hug. Give me a hug,' " Steve recalled. "I've never been so embarrassed." Embarrassed, yes. But proud, too.
"I used to hold her in my lap every night after dinner, for the past three or four years, get up in her face for an hour and say 'Mama,' " Angie said. "That is such a reward. It's huge. You just don't know." In Alabama, word of the resources available in North Carolina is spreading among the Tullys' friends. One, a single mother with two disabled children under 5, has moved to Graham, a 20-minute drive from the Tullys. Another friend contemplating a move recently visited. As the kids get older, Steve and Angie start thinking more about the future. Not about college, or grandchildren or retirement. More like survival. Their own and their children's. "The scary thing is, what if something happens to us?" Angie asks. "Who's going to want three disabled kids?" Alan Scher Zagier can be reached at 932-2012 or azagier@nando.com |
