Conversation with the Down Syndrome Network of WV

We wondered: What will it take to engage parents and caregivers across the state to build the necessary social capital to create positive change for kids?

So we asked them. Here’s the recap of three community conversations where our facilitator asked the same five questions. All attendees were either parents/caregivers of children with developmental disabilities or providers who care for them.

Five Questions:

1. Do you have challenges accessing health care for your child or children with developmental disabilities?

2. Do you think there’s an interest in building social capital/community building to give voice to and address these challenges? 3. How would you recommend building bridges between disability communities to work towards this common cause? 4. Who should be at the planning table? 5. What insight or advice do you have to share as we move forward?

For people with Down syndrome, some common health issues and severe medical conditions are more likely to occur, resulting in individuals needing routine primary and sometimes specialty care. Finding quality health care in rural West Virginia, regardless of where you live but especially in more isolated areas, can lead to a myriad of challenges for families. Simply finding a cardiologist, endocrinologist, dermatologist, etc., as needed in rural West Virginia is difficult. Finding a physician that takes Medicaid, for example, is even harder.

Because there isn’t a trusted source of centralized information for parents to access, many parents/ caregivers rely on “word of mouth” information from other parents. “It’s just easier to ask another parent,” attendees said. While some parents/caregivers know what comorbidities are via a provider, googling, or from other parents, some parents do not know what health issues or medical conditions to anticipate or discuss with health care providers.

This is why it’s critical for general practitioners to be compassionate and willing to research or educate themselves on the syndrome. For example, tonsillectomies and adenoidectomies were once recommended for children with Down syndrome. However, recent research suggests that children may risk developing respiratory, infectious, and allergic conditions later in life. If parents don’t stay up-to-date on this research, can they rely on medical providers to do so? Parent advocates don’t expect providers to have all the answers but to educate themselves on their kids’ conditions. For new parents or those who haven’t been trained to advocate for their child, it can sometimes be intimidating to challenge a provider on a treatment method.

Giving parents medical information — like continuing education units — could have benefits and help build trust between the provider community and the families they serve.

And so, it’s natural to coalesce around the needs of this demographic of families. Parents rarely reach out to others — policymakers, providers, other parents — until there’s an issue.

And there aren’t enough people in West Virginia with Down syndrome to build a “critical mass” or social capital to drive significant change. The families that want to advocate are pressed for time. Those in attendance referenced the number of people who couldn’t attend this meeting due to sickness in their families. Childcare is a challenge, as well as time. Many moms are out doing “pro-bono” work to support families without financial compensation.

Together, these are significant factors that impede progress.

But still, despite not having a critical mass, pressing challenges need to be addressed. Kids with Down syndrome need access to comprehensive mental health care, just like their peers, and the services aren’t available. We know that there are around 20 individuals in William R. Sharpe, Jr. Hospital with intellectual disabilities because no other services are available. This worst-case scenario concerns parents: What will happen to my child when we die or can no longer care for them? Parents are desperate to keep their children out of group homes, but services in our state are limited. There are the IDDW program, the Aged and Disabled Waiver (ADW) program, some personal and respite care services, family support services, the Children with Disabilities Community Service program, and that’s it.

A medical procedure like open heart surgery that is common for children with Down syndrome can potentially bankrupt a family. And so, the idea of

financially saving enough to prepare for health challenges once parents no longer work isn’t a realistic solution for many families. It’s a continual source of stress on caregivers; parents want their kids to be safe when they’re gone.

Several other states have more services with less strict criteria to qualify. Specific populations fall through West Virginia’s safety net because they’re perceived as “able.” For example, a higher-functioning child with autism with an IQ of around 95 who exhibits difficulty crossing the street alone doesn’t qualify for available services.

Attendees suggested more work around “topic-specific” issues rather than “disability-specific” ones to build more social support. Many children with developmental disabilities have shared health conditions. Work could also coalesce around age demographics, like challenges facing adolescents.

But the group strongly believed that groundwork needed to be laid to find common needs between advocacy organizations like the DSN-WV. They articulated a desire to find “neutral” ground where organizations can collaborate in an inclusive, equitable way. They suggested a panel or collective group working with a “point organization,” which could be outside the disability community.

The group discussed continuing rifts between academia and organizations working in this space and the animosity that beleaguers the movement. When a pressing issue — like eliminating the waitlist for the IDD Waiver — presents itself, people are willing to work toward a common goal. But it can be challenging when working to build a network of support.

Galvanizing issues, creating a neutral, equitable space, and finding an organization to take up this work were the key takeaways from this meaningful dialogue. We thank DSN-WV for its time and for sharing its expertise with us.