June 3-9, 2004
VOL 123 NO. 22
Diane Nappa with her children Alex,16, and Lauren,13, in their DeWitt home
By Eileen Jevis/ SUN staff writer
SUN photo(s) Paul Finch
Children are a gift from God, but sometimes that gift arrives with a few wrinkles in the packaging or a few extra bows. When parents welcome a child with disabilities, oftentimes they not only become parents but also nurses, advocates, caretakers, champions and defenders. The level of care a child needs may be constant –– 24 hours a day, 7 days a week. The obstacles the families of disabled children have to overcome can cause marriages to break apart, strain parents’ relationships with other children, and cause extreme economic hardships.
Diane Nappa, executive director of Familycapped, Inc., has a 16-year-old son with multiple disabilities. When talking about her son, Alex, she said, “He’s a joy. I’d do it all over again.” Nappa said that her gift of Alex has changed her priorities and taught her what is important in life and what isn’t. Nappa is a member of Holy Cross Parish in Dewitt and is divorced. Her faith gets her through the round-the-clock care Alex requires that brings multiple people to her house on a daily basis.
Nappa has 12 nurses per week who provide 20-hour a day care for Alex. In addition, Alex is visited by occupational, physical and speech therapists as well as social workers, nursing supervisors and case managers. Nappa said that the biggest adjustment for her to make is having no privacy. “I escape to the bedroom to get a few moments of privacy and to make a phone call,” she said. A recent visit to the Nappa’s found Diane working out the nursing schedule, fine-tuning Alex’s extensive daily schedule and checking the stock of the 26 different medications Alex needs. “Pharmacy runs are a daily thing,” said Nappa. Alex is fed through a gastrointestinal tube, receives respiratory treatments and requires position changes throughout the day and night. His feeding pump and oxygen and heart rates are monitored constantly. While he doesn’t walk, talk or move Alex’s mind is sharp. In fact, with the help of home tutoring, Alex made the honor roll at Jamesville-Dewitt High School last year.
In addition to taking care of Alex and her 13-year-old daughter Lauren, Nappa works tirelessly as the executive director of Familycapped Pediatric Medical Respite Center to bring the first respite service of its kind to Central New York. The project is collaborative with Elmcrest Children’s Center, Central New York Homebuilders Association and various state and county agencies. The new respite center named Casey’s Place is being built on LaFayette Road in Syracuse in memory of Casey Crichton, a child who suffered severe brain damage and lung damage that resulted in her death at the age of seven. The house will provide temporary care to disabled children so that their families can take much needed breaks. Sue Crichton, Casey’s mother, and Nappa formed Familycapped, Inc. as a parents group in 1990 and incorporated four years later. In 1998, the two moms took the idea of a respite center to agencies for the disabled in the Syracuse area and were turned down again and again. “No one wanted to do it,” said Nappa. “It was too expensive, there was no model to go by, and it’s a difficult population of kids to serve,” she said. Finally, the women went to Sen. John D. Francisco who was interested in what they had to say. “We didn’t even know what to ask for,” said Nappa. “Finally, we asked for the most expensive thing on our list –– a respite house.” In 2002, Familycapped received a grant and the real work began.
Sen. DeFrancisco’s backing of the project gave it credibility, explained Nappa. “The state will pay for the operation of the center, Medicaid will pay for nursing, private funding and fundraising efforts paid for the building and the grant sponsored by Sen. DeFranciso paid for the capital construction of the house,” she said. The six-bedroom house will serve eight counties in upstate New York. Currently, 213 children and families in Onondaga County alone would benefit from Casey’s Place.
According to Larry Consenstein, M.D., chairman of the pediatric department at St. Joseph’s Hospital and board member of Familycapped, Casey’s Place will be the only respite care facility in upstate New York. Currently, Catholic Charities of Broome County offers in-home respite care through Child and Youth Services for severely emotionally and mentally disturbed children. “We have 30 part-time human service professionals on call who provide a break to parents and caregivers in need,” said Tonya Brown, division director of youth services at the Broome County agency. Brown said that the program serves children ages 11 to 14 on a short-term basis. “Our goal is to strengthen the family unit,” said Brown. To do that, the program offers hourly respite so that parents can attend parenting classes, receive counseling or spend time with their other children. “There is a very long waiting list,” said Brown. “We offer three to six months of support and then discharge the family so that we can move on to the next family in crisis.” Brown said that before discharging a family, Catholic Charities refers them to other agencies who can provide services to meet the needs of the entire family. While the program customarily offers hourly respite support, in extreme cases, they will provide overnight care to a child or family in crisis.
Consenstein and Nappa talked about the difficulty in finding nursing care for technically dependent children at home. “These kids need minute-to-minute attention and care,” said Consenstein. “Nursing care is difficult to find in Syracuse because there are a limited number of pediatric nurses, especially at night.” Consenstein explained that even if there are nurses available during the day, working parents have to take over at night and thus, go to work the next day with no sleep. “If a nurse calls in sick, the parent is unable to go to work,” he said. “Sleep deprivation is a reality of life,” said Crichton. “You’re not able to function or think. You don’t even know what agencies to call.” Crichton and Nappa said that the support group for parents with children with disabilities meets at Immaculate Conception Church in Fayetteville and offers both emotional and practical support. They help each other network, find outside assistance and share their experiences. They also work with a team of dedicated, caring adults who serve on the board of Familycapped, including Don Lark, anchor of WSTM-TV, Jim and Juli Boeheim, Marianne and Tarky Lombardi, Jr., and many others.
Don Klepper of Klepper Construction Company, the construction manager for Casey’s Place, has been instrumental in getting the six-bedroom center built. “This project is dear to my heart,” said Klepper. He is responsible for the entire project from beginning to end. “What I am doing is getting this place built at cost,” he said. Klepper has approached all of the suppliers he has done business with over the last 20 years and asked them to donate or sell materials at greatly reduced prices. “As a result, we are able to build this fantastic house at a price we can afford,” said Klepper. Celeste Madden, M.D., is the pediatric medical director at St. Joseph’s Hospital and a member of the board of Familycapped. “There is no substitute for respite care,” she said. “Think about never having a vacation, or if you can pull it off, the anxiety it creates for parents who are away from their child,” said Madden. “Having skilled staff taking care of your child will go a long way in making families feel comfortable. It’s long overdue.” Nappa couldn’t agree more. Several years ago, she went on vacation to Mexico. Her vacation was cut short when Alex got sick. After many phone calls to Upstate Medical Center, Nappa and the other couple who also have a disabled child, had to fly home because of their children’s medical emergencies. “Our phone bill from Mexico was $1,800,” she said. Nappa said that while it is possible to have a life, it takes planning. “Make sure you have planned a vacation that you can come back from quickly and easily,’ she said.
Crichton expanded on this. “The hardest thing for me was losing spontaneity in my life,” she said. In addition to not taking vacations, Crichton said it was the little things she missed. “My younger child who wanted me to go out and play in the snow with her was told no because there was no home nurse available,” she said. “That’s what’s exciting about Casey’s Place –– giving people respite.” Crichton said that her faith got her through her seven years of caring for Casey before her death. “God had plans for us by bringing Alex and Casey into our lives,” said Crichton. “It’s a path we’ve journeyed that was out of our hands –– how we met and how it’s evolved into Casey’s Place.” While Nappa admits that she questioned her own faith from time to time, she realized there was a big piece of her missing when she was away from it. “I felt hollow, empty and had nothing to rely on,” said Nappa. “Now, my one hour in church is the most peaceful hour of my week. It’s a very emotional hour.”
Crichton said that while her faith in God never wavered, she found she was praying for the wrong thing. “I was praying for Casey to be healed,” said Crichton. “It was I who needed to be healed. I was the imperfect one. Casey was perfect. She was exactly how she was supposed to be. Crichton said that Casey brought a lot of joy to the people who met her. “God’s hand was definitely in this,” she said. “He wasn’t doing what I prayed for and I became a changed person because of it.” Finally, Nappa introduced Alex and spoke a little about his likes and dislikes. Despite the medical equipment crowded into her son’s room, the room looked like any other 16-year-old’s –– an aquarium bubbled, posters adorned the walls, CDs and DVDs were stacked on the shelves and the television was prominently placed. “He loves music, MTV, fishing, movies, sports, especially basketball and girls,” said Nappa. When Alex was asked if that was true, he smiled a very big smile. “The nurses are humbled by Alex,” she said. “No matter how bad of a day they may be having, they see Alex’s joy and are happy.”
For more information about Casey’s Place, contact Diane Nappa at (315) 449-4815.