Family Feature: The DeSieghardt Family, Part 1

Arcare is excited to release Part 1 of our first Family Feature. Our first profile introduces the DeSieghardt family through an interview with Fred Sr. and Fred Jr.

Fred Sr. is one of the founding members of our organization. Part 1 of the DeSieghardt Family Feature explores the beginnings of Arcare from a family perspective.

“Hi, Freds!”
That was the greeting, followed instantly by laughter and waves, given to Fred Sr. and Fred Jr. at the beginning of our interview. Amanda Fletcher, the Arcare Plan Coordinator for the DeSieghardt family introduced us virtually. As Fred Sr. and Fred Jr. sat side by side, I could feel the deep connection and bond that this father and son shared even though I was not physically with them. After complimenting my Italian surname, Fred Sr. briefly reminisced with me about his time spent in Italy before and after World War II. He then smiled and suggested we “get down to business.” Fred Jr. had gone through some family photos that he was eager to share with me.

Laura Pederzani, Arcare Community Outreach Specialist

The Idea

Fred DeSieghardt Sr. is one of the founding members of Arcare.

Growing up in the 1950s and ’60s, Fred Jr. was actively involved in a Boy Scout troop that included other individuals with disabilities. It was a wonderful opportunity for Fred Jr. to make friends with kids outside of his school who shared some of the same life experiences. In addition, the families of loved ones with disabilities were able to connect with each other and establish an additional network of support. Fred Jr. also was performing well in a special education program at school.

Fred Sr. and his wife realized that when Fred Jr. graduated from the program, he could get a job. They were thrilled at the idea, knowing that Fred Jr. could maintain a level of independence and stay active in the community. However, beyond high school and securing employment for Fred Jr., they began thinking of the day when Fred Jr. would no longer have parents to help him. They wondered, “And then what?” The thought that Fred Jr. might be left to navigate the disability system in the 1970s and ’80s alone with no other support weighed heavily on the family.

Fred Sr. decided to write a letter to the organization now known as The Arc, which promotes supports the full inclusion and participation of people with intellectual and developmental disabilities in the community. In his letter, Fred Sr. explained his situation and his feelings. He surmised that there were other families and individuals with special needs in the community who would be equally affected with such a loss and who could benefit from continuity of oversight.

The Beginning

Fred Sr., left, and Fred Jr., right, celebrated with Fred Jr.’s niece, Aiislen, on her graduation. Fred Jr. is incredibly proud of Aiislen and enjoys visiting her in Delaware.

Fred Sr.’s letter reached Susan Smokowicz, director of The Arc. She met with the DeSieghardts and a committee of parents to discuss their fears, their needs, and what they envisioned for an organization to support their families. The parents were either members of The Arc or families that they knew from the community.

After about two years of discussion, research and guidance, the families were told, “You’ll have to go from here on your own.” The families chartered Arcare in 1982 and began operating as a board. In 1990, the Arcare Board of Directors hired Barb Helm as the organization’s Executive Director, a position she still holds today.

“What we perceived was the mission of Arcare was to oversee individuals with disabilities who were essentially capable of managing much of their lives but could benefit from kind of an umbrella,” Fred Sr. said. “What we didn’t anticipate was that there were a lot of other people who had loved ones in their family with varying levels of disability and who were hungry, in some way, for some anchoring organization who they knew could fill their needs if their family structure broke.”

Fred Sr. explained that family structures break for numerous reasons, such as job transfer, divorce, serious illness in one or more members of the family, or death of a family member. When that happens, “the emphasis is often taken away from the oversight of the individual with special needs.”

Meeting Evolving Needs

“As we went merrily on our way seeking to evolve an organization for individuals like Fred Jr., the inquiries came in — and I mean, they really came in,” Fred Sr. said.

Fred Sr., far right, and Fred Jr. visit Fred Jr.’s niece, Aiislen, and her friend.

Soon, families began to reach out about leaving money for a family member with special needs and asked if Arcare could manage those funds. “Initially, we said no. We can’t help you with that.” But in the mid-1990s, a board member who was an attorney introduced the idea of Arcare developing a Pooled Trust Program. The program would allow Arcare to serve in the capacity of trustee. The Board of Directors contacted United Missouri Bank for help developing a management policy with the objective being protection of principal and preservation of resources for future use, which continues today as part of Arcare’s Trust Program.

“The market came to us. Arcare evolved based on the needs of the people, seeing what people needed often before they knew they needed it,” Fred Sr. said.

Stay tuned for the continuation of the DeSieghardt Family Feature. In Part 2, we will explore some of the “wins” the DeSieghardt family has experienced as Arcare clients and the need for continuing advocacy for the families Arcare serves.