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Caregiver Connection

This has been a tough year, for many reasons that are unique to each of us. However, each day we get up and take care of business all over again with no one really knowing the truth about our situation or what it is like to walk in our shoes. I heard this past weekend that leadership is “making tough decisions when no one else has the entire picture that led to those decisions.” In our world at the Board of DD, that also relates to the topic of this blog.

In late 2021, we gathered with a group of families to talk with them about their needs and concerns as it relates to their loved ones with developmental disabilities. None of us completely understand what it is like to walk in their shoes or the decisions they have to make each day. The group is primarily made up of parents who are caring for an adult son or daughter with a developmental disability or a chronic medical condition. The workforce issues our field is facing is placing an incredible burden on these families particularly. Many are struggling to find quality, caring people to help them with their loved one. They provide what their child needs 24/7, 365. No matter the level of need, as these parent’s approach 70 and 80+ years of age, the past 2-3 years has been very tough.

We have heard families say…

“We have not had a break in two years.”

“We can’t even use the hours we have available because we do not have a provider.”

“We can’t go to church together as one of us has to stay home.”

“Vacations are impossible until we have someone to check in on our child.”

One issue is the workforce; however, the other is distance to family support and the mobility of families today. Many older caregivers no longer live near their own siblings or their other children. This is a perfect storm. They need the support, and they need to trust the people supporting them. There aren’t many paid providers any longer willing to provide even 2-3 hours of support a week for payment. It is a scary time.

That initial meeting led to a yearlong support group called Caregiver Connection. The parents named it as that is what they do- connect. They get to listen to each other and we get to take time to see if there is a creative way that we can help. I have learned so much this year from them. Truly, 32 years as a social worker and I might have learned more this year than any other year (Well, that might have been 2016, my first year as Superintendent!) However, this year is a close second. There have been so many challenges and lessons this year, I cannot even recount them all. Even still, there is joy each morning, and the families that have been meeting each month have truly helped with my perspective.

The Caregiver Connection meets the 4th Thursday of every month at 1:00pm. About 8-14 people attend each time. We have guests speak on selected topics. Both burdens and laughs are shared in this supportive group. It is open to any caregiver or future caregiver (maybe you have a sister that one day you will be caring for), so please consider checking it out. Some families that attend also support their child living in a residential home, and therefore they bring a unique perspective. Every month these amazing parents remind us how truly blessed we are in Allen County to have families doing all they can for those they love.

The topic of this blog was not to promote the support group, although I just did, but to share one such lesson from the book, The Complete Guide to Creating a Special Needs Life Plan. Mark & Lana Hoops shared this with the group and lent me his copy. Wow! I was sitting in a waiting room, writing notes for this blog on any paper I could find- a business card, the back of my checkbook (Yes, I am old enough to carry a check book yet!) This book was inspiring and practical. The author has a child with a developmental disability and he gives his unique thoughts on future planning. He says the parents who need to read this book truly have unique planning to do- and each family is so different, even though they share a common bond. These parents have spent 30-40 years navigating life through a much different lens than they likely planned for and have worked through accepting that their child may not go to college, or marry, or have a home of their own, or might need lifelong help, but they want what all other parents want for their children.

The author says when asked about the future for his daughter, “after her special needs are met, we want her to have friends, a job, a home and to have what she wants for herself. We want her to be safe and happy when we are not here to protect and support her. This is what special need planning is all about” (pg. 16). This book, published in 2013, is written as if he is talking to you about your child and has an amazing grasp on language, labeling and person centered planning. It works each issue through 4 case studies on individuals with differing vocational, financial, social and familial situations. A quote on one case study was especially impactful to me. In discussing a girl named Noelle and her parents struggle with an educational choice he says, “This is but one example of the cruel dilemma so often faced by special needs parents. They must choose a path for their child without being able to predict or control the outcome, and without knowing where their own hopes stop, and their child’s life begins.”

That defines how I have heard the parents this year in our group: wanting to know the future to plan for, and to be able protect their child after they are no longer able to do that. They are losing hope in a system that has supported them, as that system cannot support everyone’s needs right now due to the workforce issues. It literally brings tears to my eyes as I think about all that is at stake in their world. Thank you to the parents who have been attending. Thank you for sharing. Thank you for the book suggestions. Most importantly, thank you for always teaching us more.


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