Twelve years of leadership. That’s the gift a group of volunteers has given Creative Community Living by serving on its board of directors.

   When the Kansas Legislature voted to close Winfield State Hospital & Training Center in the 1990s, parents and guardians of some residents were not satisfied with the community programs available. Sharon Bird, head of that parent group, and others began talking about starting a nonprofit corporation that would meet the needs of their medically fragile children with severe developmental disabilities.

   Realizing they couldn’t do it on their own, the parents met with some city leaders who had shown strong support for keeping the hospital open, knowing the impact its closure would have on families and local communities. That led to the organization now commonly known as CCL in 1996.

   Parents/guardians serving on the board in its early days were Bird, Judy Welch and Marilyn Johnson, all of Winfield; John Foster, Douglass; Ed Szczepanik, Wichita; and Dean Bird, Augusta. Business members were Bill Medley, retired superintendent of the Winfield school district; Nick St. Peter, a Winfield attorney; Dick Vaught, William Newton Hospital’s administrator; Curt Freeland, Arkansas City’s city manager; and Dave Seaton, publisher of Winfield Publishing Co.

   “They started as a working board, some even taking on functions a staff normally performs -- cleaning houses, answering phones, making copies, delivering papers, taking care of public relations and encouraging us -- because we only had three staff members at the time,” said Linda Misasi, hired as associate director of clinic operations and now executive director.

   Since it was a brand new organization, its creators had to lease or build residences and buildings for offices and day centers – after deciding to set up operations in Winfield, Arkansas City and El Dorado. Choosing paint, deciding on furniture, figuring out how many offices would be needed – those were just three of thousands of decisions that had to be made. Page after page of policies and procedures had to be written and approved, and staff members had to be hired.

   In the years since, board members have provided oversight and guidance rather than performing day-to-day tasks. Besides monthly board meetings, there are occasional meetings of the executive board and finance committee. A board Christmas party is held, and many attend CCL’s fall luncheon honoring 5- and 10-year board and staff members.

 “The parent board members are the first to be contacted when important legislation is being considered in Topeka,” Misasi said. “They have been asked to testify, write letters and make phone calls.”

   These same parents and guardians sometimes help with fund-raisers and other special events such as camp and Kids Safe Night Out. Bird, or occasionally another mom, talks to groups of new staff members, sharing what it’s like being a parent of an individual with developmental disabilities.

   From the beginning, 60 percent of board members were parents or guardians and 40 percent were business people. There has been little turnover. Johnson and Szczepanik died, St. Peter left when he became a judge, and Seaton retired after 10 years. Victoria White served for several years before moving to Pittsburg.

   When there is a board vacancy, Bird says she looks for someone “who has a heart. They want to see individuals with disabilities do well and live a quality life.”

   Original board members still on the board are Sharon Bird, Dean Bird, John Foster, Judy Welch, Bill Medley, Dick Vaught and Curt Freeland. Others currently serving are Mark Horning, of Union State Bank; Kim Mercer, a Winfield school social worker; and these parents or guardians: Sarah Foster, Douglass; Betty Eastman and Sarah Langenwalter, both of Winfield; Mary Lou Taylor, El Dorado; and Cindy Church, Wichita.

   Sharon Bird has been president of the board since the beginning. Other officers are Eastman, vice president; Medley, treasurer; and Mercer, secretary. Members of the finance committee are Medley, Horning, Freeland, Vaught and Sharon Bird.

   Having a blend of parents/guardians and business people is of great benefit to CCL, Bird said. Parents have an emotional investment in the decisions being made while those from the community are more focused on facts and figures and how they can make the business work.

“I have a reason to serve on the board – my son,” she said. “But those who don’t have children and give this much time to our program, I think that’s an amazing thing. That’s a gift.”

   “There is a very good balance of strengths, personalities and interests,” Misasi said. “It’s a great working relationship where staff know the expectations of the board, and the board supports the staff.”

    “I’m in awe of the business people who have given us so much of their time,” Bird reiterated. “Their knowledge is priceless. We are so blessed.”

   CCL currently supports approximately 135 men and women with developmental disabilities. In its early days, nearly all clients were medically fragile and severely disabled. Programs have since been expanded to also support people with fewer disabilities.