Caller: I am the mother of a five-year-old child with physical disability. I need help. My child cannot even get onto the playground at school where everyone else in the class goes. Yes, it is a rural county, and even if there was a ramp from the sidewalk down to that enclosed playground area, the playground surface consists of rocks and the wheelchair cannot be pushed through it. I need an advocate to help me with his IEP. It is so complex…
Karen Mevis, Patfhinder’s Information & Referral Coordinator:
That was me about 20 years ago. I reached out for help dealing with needed accommodations at my child’s school. I barely knew the difference between DD and ID (developmental disabilities and intellectual disabilities) at that point. After my early IEP meetings, my knees seemed to get weak just thinking about the next one; other times I got anxious or angry before, during and/or after meetings. It wasn’t easy to find an advocate back then. And I wasn’t happy about the answer I started getting. You may have heard the same thing yourself: “You are the best advocate your child will ever have.” I heard that from multiple voices, and it wasn’t what I wanted to hear. I wanted the issues to be worked on and solved by someone else — someone with the school perhaps, or with the state Board of Education, or with Disability Rights Tennessee…. But in any case, I wanted help from someone who knew more than me about how to do what needed to be done.
Eventually, after my first Tennessee Disability Megaconference by The Arc Tennessee, and after meeting other parents and some professionals there, another parent and friend who worked for a disability organization referred me to the Partners in Policymaking Program under the Tennessee Council on Developmental Disabilities. She said she had been in that program and, “It was the best thing I’ve ever done.” Along with becoming a mom and quitting smoking, Partners in Policymaking was definitely among my best things too.
It was in that program that I gained a broader view of what life is like in Tennessee for other families of children with disabilities and for adults with different disabilities. What steps have been made in the past, and what still needs to be done? We discussed these questions and many other things in the once-a-month sessions. That’s where I began to share my story, and I also began to wonder: How can I help persons with disabilities? I haven’t stopped learning how.
For me the path that led to working in the disability field and may also lead you in the same direction was about advocating and helping my own family member and friends who have disability. But please don’t forget to ask them if and how you can help!
By the way, “Nothing about us without us!” is the popular disability movement slogan used for this year’s Disability Day on the Hill theme “Nothing Without Us!” It may seem simple or easy, but I can tell you it is not. It can be quite challenging.
My path to my current position as Pathfinder’s information and referral coordinator, took me first to an advocacy nonprofit organization for persons with disabilities. I was a supports broker, and I assisted families who were self-directing services with their budgets, helped them work the program and find resources. It was quite a turn from my original career path in print journalism and photography.
Over the years since, it has been my honor to listen to and talk with thousands — in-person and on the phone — all related in some way to disability. Some of the parents and self-advocates wanted to learn more about advocacy and how to help themselves, family members and others. They wanted to make bad or inadequate things better. Those are some of the callers I referred to the Partners in Policymaking Program.
Almost 10 years ago, not long after I joined the Pathfinder team, I had the idea to write this column for our monthly newsletter The Compass. We called it “Call Pathfinder” and made the question-and-answer format similar to actual calls to Pathfinder. Any information people give on the phone is always confidential and protected by the HIPPA regulations. Still, we could base a column on resource needs people have and call about without revealing anyone’s details. That first column ran in the July, 2014 newsletter. It was about the United Cerebral Palsy Home Access ramp program. Between then and now I’ve written 109 of these columns. Today you are reading the last one from me because I’m retiring and signing off.
Resource needs and questions will keep coming up we know. Pathfinder is growing and will keep helping people get the resources they seek, if they exist. Remember to Call Pathfinder! For folks who also seek to give back and be part of a solution, I want to encourage you to persevere!
I have learned that it is true: ‘You are the best advocate that your child will ever have.’ So please …
Get Informed. Get Active and Engage!