Pioneer Parents in Indiana- Meet Beth DeHoff

By Angela Arlington

Meet Beth DeHoff

Beth DeHoff’s youngest son Kyle was born in 1999. He had a prenatal diagnosis of Down syndrome. Having two older sons with no health issues, Beth soon found out there were not a lot of disability services on the west side of Indianapolis. When Kyle was 3 years old, he was diagnosed with leukemia. “We were thrust into the disability world without much background in it,” Beth recalled. “We learned what we needed for Kyle in kind of a patchwork way, with medical professionals providing some of the information and other parents we met providing much of the rest.”

Beth’s family was active at Speedway United Methodist Church (SUMC). She became aware that most people with disabilities and their families did not attend church and often did not feel welcome in church. Beth wanted to change that. Her vision was to make the church a place where families could gain information about programs, talk to each other, and find support. “I had the idea, read the book, Unexpected Guests at God’s Banquet by Brett Webb in a week or so, and talked to some church members I thought might be interested,” Beth recalled. “I talked to our pastor, who has a son with autism. So many of them were willing to help, it seemed like it was meant to be, so we got started. Within about three months we had a mission statement and a committee and started planning a special needs fair.”

Beth started Speedway’s Special Needs Ministry in 2005 and it was an instant success. It brought information and services to people with disabilities and their families on the west side of Indianapolis and Hendricks County. It expanded actual services, provided information to families to help them access other services, and offered families a way to find support and information from each other. Since the organization was a church ministry, some of the funding came from the church budget. In 2006, Beth organized Speedway’s first Special Needs Fair with 30 disability organizations. It became a larger annual resource fair with eventually 60 disability organizations, providing information on services and supports for people with disabilities and their families.

“As the special needs fair expanded, we started charging booth fees to for-profit and large nonprofit organizations,” Beth said. “We also offered food for lunch and accepted donations for that. Eventually, the proceeds from the special needs fair provided our entire budget, and we even supported some other ministries ourselves.” Her goal to help other families was beginning. “Parent-to-parent support is invaluable for parents of kids with disabilities,” Beth explained. “When you’re overwhelmed or looking for answers, use those families to find your own support. Parent to parent support is super effective and backed by research.”

“We had speakers come and speak more in-depth about topics several times a year. We had a youth group for youth and young adults with disabilities who spent part of their time with the main youth group and part of the time with each other. We housed social skills groups. Our work led to the location of an ABA clinic on the west side. It also led to a local disability organization sponsoring a summer day camp at our church for several years. The group’s work was recognized by local disability organizations as well as the Indianapolis City Council.” Unfortunately, the organization discontinued after Beth’s family moved out of the area in 2014. “The ministry I started did not continue, but it’s not nearly as needed today as it was then. However, I’ve started a different kind of disability ministry in my new church, and it will always be something I’ll be involved in.”

Creating the Special Needs ministry at SUMC changed Beth’s path. She had been working in the marketing world when Kyle was born. “It literally called me into my life’s work. I loved helping other families of kids with disabilities, and I prayed for some way to make that kind of work my job. This work allowed me to get a fellowship at Riley Child Development Center and then a full-time job supporting NICU families and getting them signed up for programs to help them. I continue in this work, which also led me to get my master’s degree in public health. It also opened a door for advocacy, and I’ve been an active disability advocate ever since. I’ve advocated for and against state and national legislation that affects people with disabilities and their families, and I help other people with disabilities and families make their voices heard.”

Today, Beth works as the financial resource coordinator for the NICU Family Support Program, also known as the “NICU Nest” at Riley Hospital. She also serves on the Governor’s Council for People with Disabilities and on the policy committee of Down Syndrome Indiana. “I have led and participated in disability committees for the state and national United Methodist Church. I often speak on disability issues and on disability ministry, and I’ve trained other churches in disability ministry as well. All of this started with my son, and became possible through my work in the ministry.”

Beth has learned a lot from her own experiences with her son and her work with other families. She firmly believes that the church should welcome all who come. “If you want to find a church home, try some out, find a church that welcomes you, and make your place in it,” she says. She encourages others to use their own experiences to help others. “When you’ve emerged from the fog of parenting a child with disabilities, no matter how long it takes, look for ways to help other families, even in small ways. You have life experience and expertise. Share it. It can literally change your life for the better.”

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.