Pioneer Parents in Indiana-Linda Hankins

By Angela Arlington

In February of 1981, Linda Hankins gave birth to her son David. He was beautiful and adored by his family. “When he was diagnosed with Down syndrome it was a shock, and left us full of questions,” Linda recalled. “Even though my husband and I were both teachers and already had 2 kids, we had no training on how to raise a child with a disability.”

It was an overwhelming time for Linda. “We read everything we could get our hands on, made dozens of phone calls-- remember there was no internet at the time--and learned that we should start our son in physical and occupational therapy.” But where? Insurance would not cover services and the Hankinses could not take him to the hospital as an outpatient.

“There were no services in Hendricks County for infants with disabilities. It was so frustrating,” Linda said. “We kept calling as many places as we could and eventually were put in contact with other families raising children with Down syndrome. They did not have all the answers, but at least we knew we were not alone.”

Linda eventually reached the early childhood director at Noble Center (now Noble of Indiana) in Indianapolis. “After I explained our situation, he said the magic words-’We have an opening in our program and there is no waiting list. We will enroll your son.’” So on November 11, 1981, after nine months of seeking answers, David started therapy and early intervention services for 3 days a week. Linda had to handle transportation, but there were no charges for the services.

“What a Godsend for our family,” she recalled. “I cried as I left him that day, but I also felt relief that he was finally getting the therapies he needed.”

During that time, David was diagnosed with a congenital heart defect and had open-heart surgery when he was 2 ½ years old. While in the hospital, Linda met another family whose son had Down syndrome and was having heart surgery too.

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Then Linda discovered that they had the same pediatrician. “We had no idea the other family existed. I remember thinking this was not right, so I made a phone call right from the waiting room lounge, and gave the pediatrician an earful! From that time on, whenever a family of a child with Down syndrome came to him, he would give them my name and phone number to call if they wished. We connected with several families that way.”

David was at Noble Center for 3 years. During that time, both he and Linda progressed through therapies and developed many friendships. “The early childhood director urged me to get involved with Indiana’s Task Force on Early Childhood Intervention that he chaired. The members of the task force were professionals from around the state that were meeting to propose mandating early intervention services for infants and toddlers with disabilities to the Indiana Legislature. It was just the opportunity that I was seeking. I was determined that no more families should have to go through what we did to get services for their child.”

At the task force, she was introduced to Donna Olsen, who had 2 children with cystic fibrosis. That meeting led to Linda and Donna becoming lifelong friends and ultimately, the formation of Indiana Parent Information Network (IPIN.)

“Every parent needed ready access to a phone number to call where they could talk to another parent about available community resources,” Linda said. “Our co-conspirators, Gary Collings, Director of Special Education for Washington Township, and Lana Thompson, a social worker for the Child Development Center at Riley Hospital, felt as strongly as we did that parents and professionals needed one place to call to get answers about resources for families.”

The time from 1981-1987 was a blur of activity for Linda. “My husband and I were so busy, she said. “He continued teaching and started a lawn grading business to make extra money, since I had to quit my job. I was busy transporting David to doctor’s appointments and Noble Center, visiting legislators, and trying to keep a semblance of order at home. I found out years later that all my daughters remembered of that time was that I was never home--that was heartbreaking to learn.”

A member of the task force, who was a special education director from northern Indiana, took Linda to visit the State House for the first time. “It was a real eye-opener. From that time until the passage of the First Steps legislation in 1987, I was a regular visitor at the State House, talking to anyone who would listen about the importance of early intervention services for children with disabilities. On the day the First Steps legislation was enacted, David sat on Governor Evan Bayh’s lap as he signed the legislation into law.”

IPIN’s first “office” was in Donna’s basement. “The kitchen table was the conference room,” Donna laughed. “It was great, we could fold clothes while we talked, and feed the kids as we worked.”

Linda was actively involved with IPIN/ ASK from 1987-2007. She served in many leadership roles on the board, including president and treasurer.

In 1988, Linda was hired by Riley Hospital for Children as the first parent liaison in the NICU, taking the IPIN model into the healthcare setting. As coordinator for the Preschool Assistance Project in Developmental Pediatrics at Riley Hospital, she created training materials and educational resources to support her efforts to assist school systems working with preschoolers with special needs. She and others from Riley Hospital traveled throughout the state teaching school district personnel how to serve preschoolers with special needs. She also developed the Special Care Sitter program at Riley.

Linda completed her tenure at Riley Hospital as a member of the pediatric teaching faculty. In this position, she helped develop a rotation series focused on children with special healthcare needs and/or disabilities. That rotation is now a requirement for all pediatric and general medicine resident physicians. Linda also served as the legislative liaison for the hospital. In that role

she frequently traveled to Washington DC with the National Association of Children’s Hospitals to work on legislative issues concerning children with special healthcare needs. She retired from Riley Hospital for Children in 2006.

Linda and Donna both received awards from the Indiana Chapter of the American Academy of Pediatrics for outstanding contributions to the welfare of Hoosier children in 1994. Linda also received the 2004 Glenn R Irwin Experience Excellence Award from Indiana University- Purdue University at Indianapolis. In 2006, she was awarded the Roberta West Nicholson Child Advocacy Award

from the Children’s Bureau of Indiana. In 2012, she received the Distinguished Leadership Award from The Indiana Governor’s Council for People with Disabilities.

After retirement, Linda shifted her advocacy efforts toward adults with disabilities to more closely follow the needs of her now-adult son, who had developed a very rare and severe form of obsessive-compulsive disorder called obsessional slowness. Her son lives with 2 roommates in the community. He can no longer work because of the complexities of his OCD, but he volunteers for the Danville American Legion. Her daughters are now married and both have successful careers and families.

Linda currently serves on the Sycamore Services board of directors. She credits her ability to do all that she does to her husband, Hank, and her family.

If you would like to be a part of this Pioneer Parent section or to nominate someone else to be in an upcoming issue of Special Needs Living, Email us at SpecialNeedsLivingIndy@n2pub.com

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