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.