pioneer parents in indiana By Angela Arlington
was discharged, a doctor asked her, “Where do you want to see him in 20 years?” This gave hope to Donna, especially after her daughter was also diagnosed with CF. CFF did sponsor an annual family education conference. “Eventually, I worked with CFF to plan and organize a family education conference that grew from 150 participants to over 350 during the four years that I worked on the conference. It was a huge success and provided parents, professionals, and patients with an opportunity to learn and share information. It was a great opportunity to learn how to work with professionals and develop programs that partnered with families and patients to develop effective parent education programs.”
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Donna Gore Olsen and Linda K. Hankins
Donna Gore Olsen
Donna Olsen’s oldest son was born in 1975. She and her family moved to Indianapolis in 1979, followed by the birth of her second son who was diagnosed with cystic fibrosis (CF) in June of that year. Her daughter was born two years later and was also diagnosed with CF.
“Our son was hospitalized in the Methodist Hospital Children’s Pavilion where I remember going to the telephone booth at the end of the hall and calling the Cystic Fibrosis Foundation (CFF). I requested that they send me whatever information they had. I still have that packet of information. The lady on the other end of the line was a parent of a child with CF and tried to reassure me at a time when the life expectancy of a child with CF was just fifteen. My brother-in-law who was a resident at the IU Medical School was a terrific resource of information. There were no support groups that I knew. The CFF was primarily for providing information and raising funds, not providing support.” When Jim
38 Special Needs Living • August 2021
After working on the family education conferences, a visiting nurse suggested Donna might be interested in attending a meeting of parents sponsored by the Association for the Care of Children’s Health and the Federal Bureau of Maternal and Child Health. “There were some funds for hotel and flight. The Breath of Life Guild gave me funds to attend the meeting in Houston. There in the mid-1980s, I met parents from all across the United States who were doing what I had only dreamed of doing – starting parent programs, state resource centers, and, changing federal and state laws. There were only about two dozen parents attending the meeting, but what a dynamic group! I came home with the hope of starting a program or connecting with existing programs.” There was one program in Indianapolis, but it became clear that there was turmoil and conflict. Donna decided to try another route and connected with the Indiana State Department of Education who linked her with the Parent Information and Advocacy Task Force of the Preschool Planning Grant. Linda Hankins, the mother of a son with Down syndrome, was chair of the committee. “Timing is everything, you can’t do anything alone.” “We soon realized that regardless of whether a child had a developmental disability or a serious chronic illness, the issues for their families were the same whether financial, emotional, or educational. The biggest issue was access to information in a timely manner. As a result of our involvement on the preschool planning grant, Linda and I worked together to bring a group of parents from all over the state of Indiana to meet with the Governor’s office to discuss the role of parents in the implementation of Public Law 99-457, the federal law that provided money to states to fund early intervention programs. Indiana’s program became known as Indiana First Steps. Eventually, Linda and I became employed by the program or through programs funded by First Steps.” Starting The Indiana Parent Information Network (IPIN) was a struggle at first. “We decided to reluctantly incorporate when we could not find another not-for-profit who was interested in developing an information and support program across disabilities. The final straw was when Indiana could not take advantage of a grant opportunity because none of the current not-for-profits
