Family Feature: The DeSieghardt Family, Part 3

Arcare’s first Family Feature introduces the DeSieghardt family. We hope you’ve enjoyed the previous installments:

In the conclusion of this series, the DeSieghardt family reflects on how the Life Care Plan Program has helped their family, the connection they have with Arcare staff and their advice for other families facing similar challenges.

The Life Care Plan

The Life Care Plan provides individualized planning services for families whose lives are affected by disability. The plan seeks to answer important questions about the future, and Fred Sr. says each plan is very customized. “The relationship you have with an organization like Arcare is as detailed as it can be to maintain the lifestyle of the family,” he said. The DeSieghardts update their plan annually, including any changes or new hopes and desires for Fred Jr. that have developed throughout the previous year.

Fred Sr. shared a few examples of specifics in the family’s Life Care Plan. After Fred Jr. retired from his full-time job, the family made sure to include Fred Jr.’s desire to continue volunteering at the hospital because helping others is important to him. Not only does volunteering give him something to look forward to, his passion for giving back to his community gives him an irreplaceable sense of fulfillment. Fred Jr. also has a strong connection with his nieces, and the family would like him to be able to travel and visit them as much as possible in the future.

Knowing the wishes of Fred Jr. and his family, the Arcare staff can assist with making arrangements for safe travel, volunteering and any other passion he develops to help him live the highest quality of life as possible, even after his father is gone.

A main goal of the Life Care Plan is to ensure clients feel confident knowing their loved one will be cared for and protected even when they’re no longer able to provide the direct services and support he or she needs. By developing a detailed and customized plan for each client family, staff can ensure that their loved one continues to experience life in a caring environment, surrounded by a circle of support.

The Arcare Experience

“The Arcare staff are very professional,” Fred Sr. said. “Barb Helm has done a good job seeing what the organization could be.”

He reflected on how Barb and the staff attend trainings and conferences with similar organizations from across the country to discuss legislative updates and new training resources. Together, they are developing a network of organizations with the same goal: to provide caring support for families and individuals with special needs. Arcare staff attends conferences including the National Guardianship Association conference and The National Conference on Special Needs Planning and Special Needs Trusts, as well as local, state and regional events.

Respect for the individual and family is taken very seriously by the Life Care Plan staff. While interviewing the DeSieghardts, the connection between Amanda Fletcher, the Life Care Plan Coordinator, and the family was very apparent. The family was comfortable with Amanda, and it was very clear that she cares deeply about the family. The personal rapport developed between Fred Jr. and Amanda was built on mutual respect and understanding. Recently, Fred Jr. had a birthday, so Amanda and some of the staff members called him using Zoom to sing happy birthday to him. 

Amanda reflected on the inspiration she gets from the family. She explained that Fred Sr. was a strong advocate for his son, even before becoming an Arcare client. As a founding member of Arcare, Fred Sr. wrote a letter to the organization now known as The ARC, which voiced his concern about the need families had for an organization to assist with long-term planning and oversight for their loved ones with disability.

Amanda said, “When I first started at Arcare years ago, I remember reading that letter for the first time. It was very profound to me. To see a father and mother wanting Fred (Jr.) to be as independent as possible and live his life — he was just such a phenomenal advocate, and that still resonates with me today.”

Seeing the growth and changes and knowing that the families served by Arcare have a plan for their loved one’s future fuels the passion of the Arcare staff to continue filling this abundant need in the community.

Advice to Families

Nearly 40 years after Arcare’s founding, Fred Sr. says people are still surprised when they learn that such an organization exists.

“What I want other families to know is that Arcare is there for them. The fact is, it is very personal, and it is professional — especially with confidential matters,” he shared. One of the most important functions Arcare provides families, Fred Sr. said, is that “Arcare helps parents continue to be parents.”

He described how knowing that Arcare staff could help Fred Jr. manage his medical appointments, home and community-based services, and even finances alleviated the stress he felt as an older parent. The time he spends with Fred Jr. can simply be focused on being together and experiencing life together without worry or hesitation. He is also relieved knowing that Arcare will make life transitions easier for Fred Jr. when he is no longer with him.

Arcare was founded to meet a need that existed for families in the community to make certain that their loved ones with a disability would receive caring, planned, professional support throughout their lives. In addition to the Life Care Plan, Arcare offers Special Needs Trusts and payee services to help individuals with disabilities maintain independence. If your family needs help developing a long-term plan for your loved one with a disability, please contact us today. We can help.

Family Feature: The DeSieghardt Family, Part 2

Arcare’s first Family Feature introduces the DeSieghardt family. Part 1 explores how Fred Sr., a founding board member, joined with other families to create Arcare. Part 2 focuses on Fred Jr., some of his accomplishments, and Arcare’s continued advocacy and support of the family in years to come.

A Kind Soul

Anyone asked to describe Fred Jr. can do so in one word: kind. He celebrates many successes and accomplishments in his life, including receiving the prestigious Kindest Kansas Citian Award in 1998. He retired from Shawnee Mission Hospital (now Advent Health) in 2018 after a 41-year career. In his retirement, he returned to the hospital as a volunteer, where he was recently recognized for accumulating over 500 hours of volunteer service with the organization. Before the coronavirus pandemic, he also volunteered with Heart to Heart and Crosslines.

Fred Jr.’s parents always focused on his strengths, skills and abilities. His father shared the story of when Fred Jr. learned to drive:

In 1980, his younger brother was about to get his driver’s license. Every Sunday, his little brother would get in the car and we would drive over to the parking lot of the community college. We would practice various driving exercises there and whatnot. At the end of one of those lessons, Fred Jr. said, “Well, what about me?” from the backseat. So I said, “Okay, get up here (in the driver’s seat).” Fred was very motivated to learn to drive and learn the answers to the written driver’s test. He passed the driving test on the first go-round and the written test on the second go-round. That meant Fred could drive to the movies, to the grocery store, to the doctor’s office — he could go all kinds of places! His life could be more fulfilling than if he had to wait for me to take him.

At the conclusion of his story, Fred Sr. asked, “Now, carry that along a number of years, and guess who is driving 95-year-old me around?”

“I am!” Fred Jr. exclaimed to his father with a smile.

Advocacy and Support: Past, Present and Future

Much has changed in the disability community since Fred Jr. was born in 1953. But what has remained constant is the overwhelming necessity for advocacy and support for individuals with disabilities and their families.

When Fred Jr. was growing up, he worked in job sample assignments at Shawnee Mission West High School. He had good reports on performance, and his parents felt he could do well in a job after high school. His father helped solicit several possible employers; however, he found that most of them had no interest in hiring Fred Jr. Eventually, Fred Jr. got a part-time job at a cafeteria in Prairie Village. After four years working there, he told Fred Sr., “Dad, I want a harder job.” They then started the search all over again. Shortly after, he was offered employment by Shawnee Mission Hospital, where he had a long and successful career in a full-time, competitive employment position.

When asked how he envisioned the future role of Arcare in Fred Jr.’s life, Fred Sr. recalled another family that is actively served by Arcare’s Life Plan Program. He met the family through Boy Scouts, and they had multiple children with special needs. When their parents passed away, Arcare assisted the adult children with selling the house and purchasing a more suitable home for them to live in. He explained that Arcare continues to be involved with that family, assisting with critical and essential tasks like balancing checkbooks and scheduling regular home maintenance. Although the DeSieghardts are not in that position yet, they soon will be, Fred Sr. said. When it becomes necessary, Fred Jr.’s Life Care Plan coordinator, Amanda Fletcher, will help make that transition less stressful. Fred Sr. said he hopes that with Amanda’s guidance, Fred Jr. will continue to remain independent in the community. In addition, Amanda will know Fred Jr.’s strengths in order to advocate for him and push him to continue learning and experiencing an independent life. Amanda voiced her deep respect for Fred Jr.: “Fred is such an amazing, loving, caring man .… What Fred puts his mind to, he does,” she said.

The DeSieghardt Family Feature series isn’t over: Stay tuned for Part 3, highlighting the family’s advice to others who may be facing some of the same challenges.

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.