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For blind babies, future in flux
By DAN DeWITT
© St. Petersburg Times, BROOKSVILLE -- Alex Boudreau's parents and teacher huddled over the drama taking place on the light table. Alex, who is 21 months old, gazed through his glasses at a green toy train that glowed with the light from the table. He wanted very much to touch it, but couldn't quite get his hands to move where his eyes directed them. "He's definitely working on it," his teacher, Becky Barber, said to Alex's father, Steven Boudreau of New Port Richey, who was sitting near his son Friday in a therapy room at the Lighthouse for the Visually Impaired and Blind. "He's got his hands out of his mouth and on the table." Barber added a couple of translucent red bricks to the top of the train and crashed it against some brightly colored shapes on the table. Alex smiled broadly, then suddenly reached out and gave the engine a shove. "It moved! Good job. Good job," Barber said, hugging Alex while he squealed with satisfaction. Such responses are reason to celebrate, Barber said. To push the train, Alex, who is legally blind and has cerebral palsy, had to focus on it, she said. He had to coordinate movement with vision. When it rolled across the table, he learned that his actions can have pleasing results. If these lessons can be repeated frequently at a young age, Barber said, children can advance to eating, dressing and operating a computer. If they are not, she said, the result is often lifelong dependence. "I don't want them to be 'done to' kids," Barber said. "A lot of our adults just sit, and things are done to them. They don't dress themselves. They don't feed themselves. They think eating is just opening their mouths and a magic fairy puts the food in." Barber, who serves children in Pasco, Hernando, Citrus and Sumter counties, is paid through the state Blind Babies Program. Though the value of the program at Lighthouse is obvious to her, to parents of visually impaired children and to political supporters -- including state Rep. David Russell, R-Brooksville -- it is in danger of being cut from next year's state budget. The state Office of Program Policy Analysis and Government Accountability has blasted the program and its use of its $1-million annual budget. A recent report from the office, which studies the effectiveness of legislative initiatives, said implementation of Blind Babies was erratic and slow. Accountability was almost nonexistent, the report stated. And Blind Babies actually served fewer children statewide in the 2000-01 fiscal year -- its first as a permanent, fully funded program -- than in the previous year, when it was a trial initiative. "Because of these failures, we cannot recommend that the Legislature continue funding the program," the report said. Russell, who sponsored the House bill to fund Blind Babies long-term, said he will fight to save the program. Some of the points in the accountability report are valid, he acknowledged. But the problems can all be corrected, he said, and they do not justify scrapping a program that gives a valuable service to one of the most vulnerable groups in the state. "We are not going to let this program fail," he said. That point was echoed by state Education Commissioner Charlie Crist in a letter to the accountability office. In it, Crist did not quibble with most of its findings. "The report on the Blind Babies Program is generally accurate," he wrote. But many problems can be explained by a bureaucratic shift, he said. In February of this year, Crist stated, the state Division of Blind Services, which supervises the program, moved from the Department of Labor and Employment Security to the Department of Education. That meant many of the administrators most familiar with Blind Babies were no longer running it, Crist said. Also, he and others said, no other programs like Blind Babies exist in the country, so there was no model for implementing it on a statewide level. One other obstacle was a lack of private organizations available to teach children. Lighthouse and other well-established agencies for adults easily adapted to serving younger clients, said Chip Kenny, of the Division of Blind Services. "But in a lot of other parts of the state, we didn't have those in place. That's one of the reasons this program has been slow in getting going," he said. That is also one reason the program served relatively few children -- 185 statewide -- he said. Groups cobbled together to perform the functions required by the Blind Babies bill often did not have contacts in the community to recruit potential clients. That is not a problem with Lighthouse, which was one of four providers that have been teaching children since 1996, the year Blind Babies was established as a pilot program. Lighthouse executive director Roxann Mayros was one of its original backers. She realized the need, she said, because so many parents called her agency asking for instruction for their blind toddlers -- assistance that is generally not available until children reach school age. During the first four years of the program, the four agencies across the state, sharing $124,000 annually, served more than 100 children, the accountability report said. Thanks partly to the backing of Russell and state Sen. Ginny Brown-Waite, R-Brooksville, funding increased to $470,000 in the 1999-2000 fiscal year, and the program was expanded to six providers. Though $1-million was made available the following year, Kenny said, only $535,038 was paid to agencies because they are only reimbursed for time children receive therapy -- at a rate of $50 per hour. If that sounds like extravagant pay for an educator, Mayros said, it is not. Every hour of therapy comes along with other time-consuming duties: preparing for lessons, writing progress reports and traveling through the four-county service area. "(Barber) is paid very minimally for a woman with her experience and a master's degree, about ($25,000). She does this because she loves to," Mayros said. Barber, who formerly taught high school English, said she can afford to work at her current job because her husband has a good job with benefits. "What's important to me at this point in my life is to do a job where I make a difference," she said. "And I think I make a difference here." Treating young clients is essential, she said, not only because they may be forming lifetime behavior patterns, but because that is when pathways in the nervous system are established. How children process vision and coordinate it with movement is largely determined at a very young age, said Barber, who conducts about 20 sessions with children each week. "Parents ask me if there's a waiting list. I don't do waiting lists. If you have a baby who is blind, you need help tomorrow," she said. The effect on Alex is obvious from the moment he is carried into the toy-filled children's wing at Lighthouse by his mother, VaCelia Boudreau, who quit her job as a licensed mental health counselor partly because she takes her son to 11 therapy sessions each week. Most are designed to give him the stimulation that more mobile children get naturally from playing. "Alex is like an athlete in training," his father said. Barber carries Alex into a darkened chamber, where calypso music plays not only through a speaker but through a padded mat. When Alex stretches out on it, he immediately begins moving in time to the music. Later, he sits at a computer, which is programmed to tell him a story when he hits the large red disk that Barber has placed in his lap. And then he punches at a model of a traffic signal that is almost as tall as he is. The red, yellow and green lights flash as they are touched. In the middle of this session, the door to the parking lot opens, and 3-year-old Zachary Urban strolls in as an example of where all the therapy is leading. Zachary's vision is nearly normal, said his mother, Julie, of Brooksville. But, Zachary, who also has cerebral palsy, had no ability to process sight until he began coming to Barber as an 8-month-old. He now confidently plays with the toy stove, works the computer and navigates the crowded toy room with his walker. Much of this progress, Julie Urban said, is due to Barber's instruction and encouragement. "If you don't have hope, what do you have?" she said to Alex's mother. "And this is hope -- that they can learn, and develop and progress."
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