Those of us who work for the Center for Family Involvement are often asked what we do. To be honest, it’s difficult to explain because the list is so long. We have our fingers on the pulse of so many things that affect families affected by disability.
Our main purpose is to provide support to families, both informational and emotional, and through that support empower them to navigate the complicated world of disability services on their own. Hopefully they end up with the tools and confidence to help other families one day either on their own or as a volunteer with us. We also teach our communities what it means to truly embrace people of all abilities as their equals.
What makes CFI so special is its diversity. Our staff and volunteers have collectively been through it all, or at the very least know where to find someone who has the knowledge and life experience to help those we match them with.
Our staff’s specialties include intellectual and developmental disabilities, Autism, rare diagnoses, mental health, deaf and hard of hearing, blind and visually impaired, IEP and education experts, health care gurus, and so much more. Some of these staff members also serve as cultural brokers to minority populations, including refugees and immigrants.
This huge range of expertise is important because our circumstances can change in the blink of an eye. Suddenly we’re thrust down an entirely new rabbit hole of doctors, appointments, jargon, and stress. A new diagnosis puts us back into grieving mode. It’s a vicious, cruel cycle.
It’s an experience I was thrust into recently, which I shared on this blog: https://centerforfamilyinvolvementblog.org/2017/04/19/7-ways-to-prioritize-your-childs-health/.
With my son’s new diagnosis of hearing loss, I went from a CFI staff member to a recipient of our services. Two of my colleagues with experience on the topic wrote back within minutes of receiving my email. I arranged times to talk with Dawn Peifer and Irene Schmalz that same day.
Dawn offered advice on how this will change the way I approach my son’s IEP. She wants me to keep her informed of how that process goes and follow up when it’s time to make changes.
Irene handles our deaf and hard of hearing cases. She filled me in on what I should expect, what questions I should be asking doctors, and what the next steps are for our family. She connected me with professionals and informed me of a hearing aid loan bank. She urged me to call her after the next hearing test. That morning in the waiting room she texted me to see how it was going. She’s followed up regularly since then.
What a tremendous comfort during an incredibly difficult time. Because of the information I gathered through the CFI staff and the people they connected me with, I was able to make informed decisions about my son’s health care. I was confident and assured when meeting with the audiologists. I am comfortable with the treatment plan we collaborated on together. Without the support of the CFI, I would have been questioning whether I was doing the right thing.
The CFI has people across Virginia doing the same. When families need help, our staff members are doing whatever they can to support them.
One of the many great things we do is connect families and individuals with other disability organizations. There is no competition. We want to help others tap into the many resources all of these groups have to offer. Most families don’t know what The Arc is or what Community Services Boards do until someone tells them. I sure didn’t. There is a steep learning curve with each diagnosis. It is a wonderful feeling for the CFI staff members to share our knowledge and connect families to everything that is out there for them. We are here to help people learn how to help themselves at every part of their journey; from the beginning during the surprises and throughout this beautiful thing called life.