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Doggedly advocating on behalf of children

A 5-foot tall, fuzzy blue Cookie Monster leans against the wall near the front door of Mary Cariola Children’s Center Inc. He looks a little lumpy from too many enthusiastic squeezes, but his smile is big as ever.
A little boy with a helmet careens down the hallway on a bike, laughing, while a woman follows, trying to keep up.
A caramel-colored Golden Retriever-a real one, not stuffed like the Cookie Monster-lies in front of the office of Paul Scott, president of the center. Although the dog, one of three Scott brings to work every day, likely has been squeezed as often as Cookie Monster, her coat is smooth and shiny.
The Mary Cariola Children’s Center in the human service complex at Elmwood and South avenues works with more than 500 children, from birth to age 21, who have multiple physical, mental and emotional handicaps. The center offers day-care, education and training at the Elmwood Avenue site and has four group homes in Monroe County. A new residence on Bailey Road in Henrietta is expected to open this month.
The non-profit organization has a budget of more than $18 million a year, with 60 percent coming from school districts, 35 percent from the state and county, and the balance from donations and other sources.
The services are labor-intensive. The center employs some 500 staffers, from classroom aides and occupational therapists to psychologists and social workers.
“If you look at the education world, it’s here,” Scott says, pointing to the middle of a table. “Then there is the special education world here,” he says, pointing a little more to right.
“At Mary Cariola, we are way over here on the edge. We are a very specialized population of special-needs kids.”
Children come to Mary Cariola through referrals, either from the county health department when they are young or through the school districts when they are older. The center works with school-age children the districts cannot handle. It has children from 50 districts.
Scott, 56, has worked at Mary Cariola for 26 years-longer if he counts the summers in high school when he worked at the center’s forerunner, the Day Care Training Center for Handicapped Children, on East Avenue.
“My parents were both involved in developmental disabilities,” he says. “My father was on the board of the ARC. And my mom was a volunteer there. She would work with mentally retarded adults on basic self-help skills-meal preparation and that kind of thing.
“From my dad, I got the sense that this kind of work is important. From my mom, I got the sense that it was fun.”

Growing up here

Scott grew up in the city at the edge of Irondequoit. He and his identical twin, Peter, now the assistant director of operations for the city of Rochester, went to Bishop Kearney High School.
Paul Scott went to Notre Dame University, graduating in 1971 with a degree in liberal arts.
“There were a lot of seminars and discussions. You learned to think great thoughts,” he says with a laugh. “But I had no idea what I wanted to do next. I had no game plan.”
He came back to Rochester after graduation and went to work for the Association for Retarded Citizens of Monroe County, now Arc of Monroe County Inc., running group workshop programs.
He decided to go to Syracuse University for a master’s degree in social work because it sounded like a good idea, he says.
“One day, someone asked me if I was going to get a degree in social work. I said ‘No. Why?’ He said, ‘Because that’s what you’re doing already.’ I thought, ‘Well, I do kind of like it, and it sounds like a nice degree.’ So I went.”
Scott worked at Syracuse Veterans Administration Medical Center while he was in graduate school. He enjoyed the work, he says, but the federal bureaucracy was frustrating.
“The huge structure-nothing could happen unless you got someone in Washington to approve it,” he says.
Then he moved over to the Upstate Medical Center and worked in adult psychiatry. He enjoyed that work, too, he says, but he wanted to get back to working with the developmentally disabled population.
After graduating from Syracuse University in 1974, he moved back to Rochester and went to work at state-owned Monroe Developmental Center. He was coordinator of a team-speech pathologists, social workers, occupational therapists, psychologists-that provided services for clients and families in their homes.
In 1978, a clinic director position opened up at Mary Cariola and Scott applied for it.
“I remember people at MDC saying the job at Cariola looks good, but they wouldn’t apply, because they had been in the state system so long, they felt they were locked in,” Scott says. “That scared me, that someone could be in a job so long they wouldn’t even consider something new.”
Scott initially thought the Mary Cariola Children’s Center was a new agency. He had been away when it had taken the new name and moved to Elmwood Avenue.
“The first week I was here, I was walking around and I saw this painting of a little boy in a wheelchair and I said to somebody, ‘Gee, that must be a famous painting, because I used to work in this other place and they had one just like it.’
“And she said, ‘No, this is the same painting. It’s (Mary Cariola’s) nephew Butchie.’ So I ended up back where I started.”
Mary Cariola was still an active board member when Scott came to the center.
“She was a real presence around here,” he says. “And it has been nice to have had that relationship with the founder.”
Cariola had a nephew who had multiple handicaps, Scott says. The health and education systems at the time had nothing to offer him.
“Mary bounced around, trying to get people to help her sister and her nephew. Everybody had a reason not to welcome him and not to include him,” Scott says. “Finally she said, ‘I’ll just do it myself.'”
In 1949, she pulled together a half-dozen families in similar situations, and the group found a room and started a day-care program.
“Mary and her sister would put on spaghetti dinners-one would make the sauce; one would make the meatballs-to fund the program and that’s how that got going,” Scott says.
Cariola’s drive and sense of family shaped the center’s mission, Scott says.
“I remember coming in for my interview and thinking, this is the way it’s supposed to be,” he says. “The kids come first. Their needs drive everything that happens and that’s what it should be about.
“It shouldn’t be that civil service determines what happens or some legislator in Albany who really doesn’t understand what you’re doing is deciding how people are cared for.”

Changing clients

Since his first day at the center, the numbers of children and staff have quintupled.
“In theory, we really shouldn’t exist. If public schools met the mandate they have that every child, regardless of disability, will have a free and appropriate public education in their school district, then no one would need us,” Scott says.
“And there has been headway made in that area. But it’s a formidable task to come up with a quality individualized program for children who are multiply disabled. They have very complex treatment and educational needs. And that’s what we do very well.”
While the number of children at the center has grown, the kind of disabilities they have has changed since the center first opened, Scott says. Many children who first used the center likely would be in the public school system today. Advances in therapy, training and medicine have allowed many developmentally disabled children to function well in traditional schools, he says.
However, those same advances have added to the population of children with other impairments. Children with disabilities do not die at the rates they once did, thanks to medical advances.
Premature and low birth weight babies who might have died even 10 years ago are surviving. Some suffer neurological problems and other disabilities because of their early birth.
“They are always going to need special care,” Scott says.
A fairly new problem for children is a parent’s drug use during pregnancy. Babies born under the influence of cocaine and heroin suffer numerous developmental problems, Scott says.
“When I first got into the field, we knew about fetal alcohol syndrome but had never heard of a drug syndrome,” he says. “But when Rochester got into the cocaine business, we started hearing more and more day-care providers saying, ‘You’ve got to get this kid out of here. He can’t settle down. He can’t pay attention. He’s either tantruming or curled up in a ball in the corner.”
Scott took the lead in developing a program for these children at the center, says Diane Syta, Mary Cariola chairwoman. She has been on the board for 20 years and says dealing with this new population was one of Scott’s biggest issues when he took the lead at the agency 15 years ago.
“He took the initiative, traveled around to see what was happening elsewhere and then brought it back to Rochester to train Mary Cariola staff,” she says “Now we have people coming to visit us to learn about our program-it’s that good.”
The center is seeing more children with autism, along with other disabilities, he says. Some experts say more children are being born with autism; others say awareness of autism has grown, leading to earlier and more diagnoses.
The pool of children with combinations of problems such as a learning disability combined with autism, or a learning disability and significant behavior problems combined with autism has mushroomed, Scott says.
“It’s not so much their level of retardation that brings them here,” Scott says. “It’s the school district’s difficulty in managing them. They can be disrupting and distracting. They don’t succeed in their special-ed program.
“Those are kids who really stand out and make a teacher’s life difficult. And they each require a specific approach.”
Dealing with new or unique problems is what Cariola staff members do well, Scott says.
“Our classrooms change every time a new child comes into the classroom,” he says. “We don’t have a set entity-this is classroom 12 and this is what it’s like no matter who is in it.”
Each room will have different furnishings, for example, based on the children’s needs. Some will have beanbag chairs. Others (have) wheelchairs or desks and chairs. In some rooms, the staff might use sign language and other cues to help the children who have language problems. Or there could be a quiet corner for children to use when they are feeling over-stimulated.
“So when a new teacher comes here, she might be very skilled and know a lot of things,” Scott says. “But she has to start learning some new things and be creative and respond to the needs of the kids in front of her; not the kids she taught last year or even last week.”

The administrator

Scott became president of the center in 1990. He completed a master’s degree in education administration at SUNY College at Brockport in 1989. He likes administration for the variety it provides, he says.
“The phone is always ringing and people are always showing up at the door with questions,” he says. “It’s really an interesting mix of things that I do.”
Recruiting and working with board members is part of the job Scott says he enjoys.
Board member Michael Osborn describes Scott as a quiet and unassuming man who is actually a strong leader. He is a team builder and looks for consensus.
“Paul has a laid-back style,” Osborn says. “He is unassuming-there is no ego there. His strength is the culture that he sets. At Mary Cariola, whether it’s staff, volunteers, whatever, it’s all about the kids. And Paul lives and breathes it.”
The most complicated part of his job is dealing with funding, he says. The school districts review each child’s performance each year, then decide whether the child should stay at Mary Cariola or go back to the district for the next year.
“Every year, we know we’ll have funding, we know we’ll have a tuition rate, but we don’t know what it will be until halfway through the year,” Scott says. “In public schools, teachers have three-year contracts, and they know what they will make for the next three years.
“But for our teachers, they don’t know what their full salary will be next year because we don’t know what our tuition rate will be next year. So they have to take a leap of faith and stick with us and hope that we come up with what they need.”
The center funds increases from its own coffers, then gets reimbursed by the state, he says. However, the reimbursement structure is complex: It can be two years before the reimbursement comes, and then it is parceled out into 12 monthly payments.
In addition, the state sets limits on reimbursements, based on predetermined regional spending trends, that do not always cover the total expense, he says.
“You have to have a cast-iron stomach,” he says. “You could lay awake at night worrying about paying the bills.”
Finding donors is one way to cover costs and raise funds for new programs, Scott says.
“So we do a lot of friend raising and fund raising,” he says. “I like the friend raising a lot, and the fund raising is important and you have to do it.”
Thanking donors is an important method of developing long-term relationships, Scott says. Every donor receives a letter signed by Scott, noting the donation and what it will be used for.
“Everybody in Rochester has a couple of hundred organizations they can contribute to. When they give to us, I think they deserve to be thanked very individually,” he says.
Hiring high-quality employees and retaining them is a big part of his job, Scott says. He and his management staff spend a good part of their time on developing human resource strategies to find the best people to work with the children.
“We take that very, very seriously,” he says. “We have children, many of them are defenseless and can’t speak for themselves. So we need people here who are responsible and caring and smart and creative and can work as part of a team.”
The center has an open environment. Classroom doors are always open and each room has an observation deck.
“We constantly have people walking in and out of the rooms,” he says. “We want to give a clear message that if you were someone who wasn’t going to treat a child well, this is the last place you would want to work, because you would never have more than a minute alone with a kid.”

Off the job

Scott’s evenings and weekends are spent working on his house near Cobbs Hill Park or helping renovate his daughter Meg’s new house outside of Boston. At 34, Meg is expecting a baby in October.
He takes his three dogs running in the morning and evening, which helps keep them calm when he brings them to the center, he says.
He and his twin still have fun when people mistake one for the other, Scott says.
“Peter is very involved with coordinating snow removal, leaf collection, lighting, things like that for the city,” Scott says. “So every time I go to Wegmans, someone comes up to me and says, ‘Pete, the lights on such and such a street are broken.'”
Once, Peter substituted for Paul at the annual kickoff staff meeting in September.
“My theme for the meeting that year was ‘Things aren’t always what they seem,'” Scott says. “I had my brother come in and give the address, then halfway through, I came in. People screamed; they thought they were losing their minds.”
(rbj@rbj.net / 585-546-8303)

07/01/05 (C) Rochester Business Journal


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