One thing I observe so often in my role as CEO of JFCS is just how challenging life is for everyone. I am routinely contacted by members of the community asking for resources or guidance about a family member facing challenges, perhaps aging and losing vital functioning, struggling with mental illness, or dealing with a physical or intellectual disability. They are reaching out to me for help, but during the course of the conversation they frequently relay aspects of their stories that involve frustrations they have had about getting the services they need.
I am always struck by how alone individuals feel in trying to obtain the best resources and care for their loved ones. In some ways, it makes sense because each person in need of assistance is a unique individual with specific needs that exist for their particular challenges. So when facing the “system” of care in their community, which by nature is somewhat standardized and therefore not always able to meet specific needs, family caregivers can feel overwhelmed and helpless when trying to find the best and most appropriate care for their loved ones.
Countless times I’ve spoken with people caring for those with intellectual or mental disabilities who cannot find the right resources in one place. This leads them to create their own care plan by piecing together aspects of services from various organizations in the community, forming a blend of care that most closely resembles what their loved one needs. I recently spoke with a woman whose daughter is intellectually and physically disabled. She told me about her daughter, as well as a friend with a son who has autism. Both adult children, good friends, are extremely active, vital members of the community, but their mothers still did not feel comfortable arranging for their kids to live in the same type of residential care model because their needs were so different. Each went on to pursue a plan for what was most needed for their individual adult child.
When I speak to people in my role as leader of JFCS, I am acutely aware that our organization is part of the overall system, supplying some services, perhaps a piece of the pie, but certainly not the whole. I often convey that our funding enables us to provide socialization opportunities and life skills education for those with intellectual disabilities, knowing that we don’t have the resources to offer these programs on a daily basis (including weekends). We, as I often say, are a part of a “village” of services and work together with other organizations to try and meet our community’s needs.
I am privileged to be a trusted person to so many who reach out to me to share their struggles, and I am left deeply concerned by these conversations, knowing that those who are advocating for their family members, although quite resilient, have been through and will likely continue to experience a lifetime of challenge.
The good news is that most of the people I speak with are strong. They’re learners and connectors, and they drive positive change forward due to their life experiences, wanting to make the system better not only for their family members but for all dealing with the challenges of caring for loved ones.
I will never lose sight of how much I learn from community members who call for guidance. Because they have let me into their struggles, I have become a better leader and can honor and pursue funding for resources and programs that can help them in a more thoughtful and prescriptive way for the future.