Keep Talking, They’ll Listen

Cindy Chamberlin, WV To the Moon and Back

Where are we going and how did we get here?

Over the last 10 years, as someone working in the trenches as a physical therapist here in West Virginia, I have seen the number of children born substance-exposed increase, struggles for families grow, and transition to school at times, be a disaster. It has been part passion and part profession for me– talking about the innocent victims of the drug crisis and my concerns about their development as they grow.  While many in the trenches share my concerns, those with the power to create change have been focused on other things.  I believe in part that it is because West Virginia is ground zero for the drug crisis, and so much effort has been focused on helping those adults struggling with substance use disorder, that we have forgotten about the children impacted. That is, until very recently.  

In my community, I am a “connector”: one who links others together. I am all about utilizing my resources and sharing them with others.  When I have the opportunity to go to a conference, I’m that person who talks to the people sitting next to me, exchanges business cards, and talks to the presenters about their experiences (ok, I also work with kids all day long so I am all about adult conversation, too).  I know how we must connect community resources and collaborate to start putting supports in place to help these families!

I firmly believe that Frankie Tack and WVU researcher’s recent study about teachers working with children in homes with drugs has helped bring these children’s unique needs to the forefront.  For me, it was a confirmation of what we have been seeing and saying for at least 5 years. For others, it was an eye opener that maybe we need to be doing more to support these children. 

This fall, I received a scholarship to attend the West Virginia Rural Health Conference and watched Maggie Elehwany from the National Rural Health Association present. Afterward, I approached her and asked about next steps for children with neonatal abstinence syndrome (NAS)?  I told her that while good things were happening on a small scale, too many children were slipping through the cracks and not receiving services.  Surprisingly, she asked if I would be interested in presenting at the policy institute in 2020. 

Of course, I said “yes!” Honestly, I wasn’t sure I would hear from her again, but I did– with an invitation to speak at the National Rural Health Policy Institute!

Cindy, NRHAIt’s been two weeks since the conference, and I am still speechless at the amazing opportunity and experience I had!  Not only did I have the opportunity to present with Anne Hazlett, we had a room of 300 leaders from across the country asking questions about what we can do to help these children.  The opportunity allowed me to raise awareness, make connections in West Virginia and Washington DC, and talk about not only the challenges but steps towards solutions. The presentation resulted in an invitation from Anne to meet with several of her coworkers at the Office of National Drug Control Policy the following day.  We spent an hour together talking about observations “from the trenches,” including strengths to build on and additional supports needed as these children grow.  It was an amazing opportunity to “plant seeds” and also one of the first times I felt like I was truly being “heard” from people in a position to impact the change that so desperately needs to happen for these families.

It really renews your energy when you feel “heard” and know that decision-makers are willing to listen. As a person who has worked in the trenches for more than 2 decades, I am an expert about what I am seeing and my voice (and others like me) needs to be at the table when we are looking at change. Leaders depend on us to share the “real world” experiences, so they can create the policies needed.  So, remember to keep showing up and sharing your thoughts and concerns, especially on those days when you feel like no one is hearing you!  You can be the change that is needed.

Cindy with Senator Manchin

Last January, a group of us expanded the To the Moon and Back organization into West Virginia.  This organization is a 501(c)(3) dedicated to children born with in utero substance exposure and their families.  Since 2017 we have been the leader in providing support, education, and advocacy for the littlest victims of the opioid epidemic. I do this work as a “hobby,” as I’m a full-time physical therapist. Many of us lend our time and share experiences in the hopes of helping the kids we feel are being forgotten. To those of you who do this work, thank you! Remember this: If you keep at it, when you least expect it, someone will listen.