Pioneer Parents in Indiana - meet Donna Olsen Gore

By Angela Arlington

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 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.”

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 saw the value that Linda and I saw in developing a centralized information system. IPIN activities were funded by our spouses as well as friends and family who would donate printing or anything else we needed. We used an office in the basement of our home as the IPIN office to house the computer that I had won at the Houston conference.”

At about the same time, the Indiana Governor’s Planning Council provided a training opportunity to learn how to write grants. “In 1989, we wrote our first grant, a federal grant proposal, that was approved but not funded. In the Spring of 1990, IPIN applied for a $25,000 First Steps grant to train parents to be members of the county early intervention councils. We got the grant, which allowed us to set up a separate telephone line and pay for parttime positions. Later that year, we learned that our proposal to the federal office of Maternal and Child Health would be funded at $125,000 a year for three years. It was at that point, that we decided to find an office outside of the home.”

“In 1991, we helped to pass SB 30, which allowed for the waiving of parent income and resources for home and community-based Medicaid waivers. Later that same year, we received a second grant, to fund the training of childcare workers for inclusion of children with special needs in regular childcare programs.” After that, they received state and federal grants to develop the network and provide needed information and supports to both parents and professionals.

Donna served as Executive Director of IPIN from 1987 until 2004. “Soon after, under new leadership, the decision was made to clarify to the community the mission of the organization by using a name that they felt better reflected their mission. I believe that the organization has maintained its commitment to families as a parent/family lead organization.” That was when IPIN became About Special Kids (ASK).

“When I left, I was worried how the organization would fare. I have been very pleased with its growth and its leadership. My hope has always been to make life easier for families with children with special needs by providing them with information in a timely manner, encouraging them during their journey with their children, and ultimately helping children live up to their potential with the help of their parents and the professionals who care for them.”

After leaving IPIN, Donna worked with two physicians at Riley (2005–2009) to start the Center for Youth and Adults with Conditions of Childhood (CYACC), which works with youth, adults and their families to prepare them to transition to adulthood. In 2009, she went to work in the Riley Newborn Intensive Care Unit (NICU) as part of the Family Support Program. “There, I worked primarily in the area of helping families access health benefits and understand their health coverage, commercial coverage or public, as well as employee benefits that can help them meet the needs of their children.” In 2014, she completed her master’s degree in public health (MPH). In October, 2019, Donna Both of Donna’s children are in their forties, have families, work full time, and enjoy relatively good health. They also know a lot about health insurance. “I believe their success is due to the families who I came to know and respect as well as what my children taught me about raising children with special health care needs. I also give a lot of credit to the professionals who were willing to partner with our family in meeting the needs of all of our children.”

Reflecting on her life, “In the early years, it was difficult to get some professionals to see the value of partnering with families either in the care of their child or in the development of health policy. As time went on, I believe that IPIN gained the respect and appreciation of many people in the health and education community for our desire to be good partners but also for our commitment to children and their families. It is also important to remember that nothing important is accomplished alone. Credit should also be given to parents like Linda Hankins who was willing to also take the risks that were needed and had the talent and skills to help bring the dream to a reality. Also important were the parents who had the courage to work for an organization that lived from grant to grant when funding was uncertain. Credit must also be given to the professionals who were willing to support partnerships with parents, families, and organizations in a new way.”

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