Community Conversation with the Jeremiah Tree Foundation

Participants began the conversation by sharing their experiences in knowing how it feels to be a parent of a child with either a new diagnosis or a first experience navigating a system — like health care or public education. They initially feared not knowing anyone, anything, or whom to contact. They shared stories of self-learning and times of trial and error.

For many disability diagnoses in our state, there are no support groups. Considering the wide variety of ways that a condition or syndrome can affect a child and family, people don’t readily share these experiences unless they know their audience can empathize, having shared similar experiences.

We heard from a mom who refused to have her son discharged from the hospital to ensure he received services. As a response, a member of the hospital staff told her that her son’s behavior was due, in part, to the family “not going to church enough.” The family experienced similar challenges with the school system. While their child didn’t have an intellectual disability, he did have a developmental disability. He qualified for advanced placement courses, but the school system accused him of “disrupting” AP classes and wanted him in “normal” classes instead. Struggling with major depression, mood dysregulation disorder, and chronic urticaria already made school difficult for him; the lack of support from the system impeded his progress. Still, he graduated because his family was willing to advocate for him. There are many families that, for several reasons, don’t.

A lack of resources always has beleaguered families of special needs children in our state. It can worsen a bad situation — whether it be accessing health care, public education, or social support.

But when it comes to advocating, perspective means everything. People are ready to advocate collectively if everyone shares a similar situation — like the lack of spots on the IDD Waiver list. But when it’s advocating for the group rather than just your child, it can be different. We should all want what’s best for each other’s kids and “stand shoulder to shoulder” with one another, but other parents come at these situations not wanting to “rock the boat.”

When advocating for something as complex as medical equipment not covered by Medicaid, it’s an issue that takes strategy, time, resources, and advocates from both the parent and medical professional perspectives. While we collectively know of a handful of parents and professionals interested in taking on this issue, there are not enough people who care to create the critical mass to take on the WV Bureau for Medical Services.

The group discussed how in previous years, lawyers and groups such as Mountain State Justice would fight for the rights of children and families in court. But many of these advocates have retired and moved away.

Similarly, parents had “champions” in the school system and at WVDHHR. While it should never be a “whom you know” network of supporters, there were at least people that families could rely on for help. Many parents are “clueless” about federal and state laws and how to hold school staff accountable. Someone who could help families navigate this system would be beneficial. Kanawha County is currently working on building a parent-led support group. Perhaps there’s much we can learn from them once it’s in operation.

The group agreed that having a diverse group of advocates— self-advocates, parent advocates, organizational advocates — and foundational support from invested professionals would be the optimal network of stakeholders who could collectively move the needle. Everyone would need to leverage their respective networks.

An excellent place to start would be when children are young, and professionals work directly with families — like with the Birth to Three Program. It’s where many relationships begin between providers and families.

Another place is the school system. Schools are required to have academic specialists on staff; what if they had designated liaisons for the special education population? An advocate would need to be someone who doesn’t work for the school system or is protected from consequences if parents report a lack of compliance with the law, intimidation, etc., on the part of the school system.

The Jeremiah Tree Foundation is the only organization in West Virginia that advocates for children with disabilities or chronic illnesses. It does not focus on a singular diagnosis. It welcomes parents, providers, and stakeholders under its umbrella.

It sees significant value in centralizing information on resources available to families and is willing to serve as the conduit to make this plan a reality.

The organization recognizes that some of the programs/services listed are already outdated by the time a resource guide is published. And yet, organizations still publish them. And so, a priority of theirs is to create a centralized resource for information. In doing so, they are in a key position to build bridges between agencies and families.

Their goal is to have a full-time director. This is an essential step for the organization; many disability advocates assume that their work should be 100% volunteer and not a paid position. This makes their work very limited, as they can only do it aside from their “day job.”

The group identified the Healthy Grandfamilies program as an important partner in this work and organizations advocating for more mental health care. The Exceptional Families Facebook page has been archived with a wealth of information, albeit sometimes dated, as well as the WV Waiver Families Facebook page.

Perhaps an additional next step could be a group meeting with representatives from the “big hospitals,” i.e., the state’s children’s hospitals and some of the out-of-state hospitals where families take their children — like Nationwide Children’s Hospital, Cincinnati Children’s Hospital Medical Center, and the Children’s Hospital of Pittsburgh.

Above all, we use our collective power to amplify our voices and improve health care and public education policy for the sake of children’s health. To do this, we must find a single organization to take the lead.

We thank the Jeremiah Tree Foundation for its time and for sharing its expertise with us.