Featured resource for January newsletter: talking to your legislator

We will be introducing the health information specialists (HIS) and family leadership specialists (FLS) for the family to family health information center at Family Voices Indiana over the next few newsletters. Their biographies will also be included on our website. Every contractor at our center is a parent of a child(ren) with special healthcare needs and/or disabilities. We have personal experience navigating the systems and services in Indiana. We look forward to learning more about your families as well.

Traci Kurmay is one of our HIS for the Indianapolis area. Traci resides in Avon, IN along with her husband and their two wonderful children, Makenna and Maison.

Traci’s desire to help families navigate the world of special needs comes from her experience with her own two children as well as her personal battle with childhood cancer. Her daughter Makenna was born extremely premature, 3 months early. Makenna weighted only a pound and as a result has several special health care needs. Her son Maison is a vibrant little boy who has Down syndrome. The children keep Traci busy as the family is very involved in their community.

After the birth of Makenna, Traci began volunteering and offering assistance to other families in her community. Upon the arrival of Maison, Traci knew her place was to help other families in need.

Traci has worked as the Parent Support and Education Coordinator for Down Syndrome Indiana as well as her current position as the Family Trainee at the Riley Child Development Center. Traci proudly services on the Speedway United Methodist Special Needs Ministry as well as an active board member for Optimist Miracle Movers. Traci received her bachelors from Indiana University and is currently working on her master’s degree in special education.

Michelle Green is one of the FLS in the Indianapolis area. She feels that advocating for special needs families is her calling and is enthusiastic about serving in this capacity.

She and her husband are the proud parents of four wonderful children. Michelle’s passion to help others stems from her experience working and volunteering in the not-for-profit sector as well as being the mother of two children with special healthcare needs.

She is an active volunteer for the March of Dimes and various nonprofit groups and organizations. She is also a member of her church outreach ministry and volunteers for her local elementary school.

This month’s topic is not are usual program highlight. Instead, we are highlighting the legislative session since it can impact services for children with special health care needs.

You can read FV’s entire guide to the legislative session here:

http://www.fvindiana.blogspot.com/2012/01/guide-to-2012-legislative-session.html

One of the best ways to advocate for your child is to develop a relationship with your legislators. In this section, our HIS, Kerry Bonney, shares her own experience:

It was with trepidation that I stepped into the marble-floored hall of the Indiana Statehouse. As part of a job-related course, I had been given an assignment and was determined to complete it, despite my qualms. I was to meet my state legislators, both representative and senator, and briefly tell my story as a parent of a child with special needs.

A quick check at the desk of the senate area left me feeling relieved, as I found out the state senate was not in session for the day. However, it was clear from the noise and number of people on the other side that the representatives were indeed meeting. I slipped up to the party desk of my representative, and asked the clerk for an audience as a constituent of the legislator’s district. The clerk directed me to a small area where I was to wait until the honorable representative arrived.

My hands were sweaty and my heart was pounding! I had never done anything like this! I had been instructed to introduce myself, to briefly (under 5 minutes) tell my story, and then offer my thanks and leave. I could do this, right?

Fortunately, a family was waiting along with me in the side room, and I stood back, hoping they would take the lead and visit first. Sure enough, they did. This was obviously not their first visit with the legislator, and he greeted the family members warmly and sincerely. Strengthened by this family’s interaction with his honor, I stepped forward and introduced myself. The representative made it easy for me, thanking me for my visit to the statehouse, and asking me how he could be of service. Surprisingly, the words I had practiced came out smoothly! I explained that I was mom to a child of fourteen years, who had multiple medical needs and that my husband and I, being small business owners, could not provide the care our son needed without the support of Medicaid, a program that was currently in danger of budget cuts.

He quickly assured me that he was against any cuts to this program, and actually asked my opinion on a specific area of the issue. After thanking him, I left the statehouse.

Ironically, just a few weeks later, I crossed paths with this legislator at a local function. He asked how things were going, and I laughingly told him “they could be better.” He asked the specific problem, and I explained. He told me he would see what he could do, and I thanked him – not really expecting anything to come of our short visit.

The next day, however, I received a call from a state official with the power to do something about my problem. The official identified herself as having been contacted by the representative that I had spoken with the night before. To make a long story short, my problem was quickly resolved.

Families are often surprised when, as an advocate, I advise them to contact their legislator regarding an issue. The relationship, however, can be a valuable one. Not only can the legislator be a resource for you, but you can be a resource for your legislator. It would be unrealistic to assume a legislator is well-versed on all bills that come across his/her desk, and occasionally he/she has no reason to vote one way or another except upon party lines.

One person I know tells the story of how one letter impacted the way a bill was voted upon. Your voice can make a difference!

The following tips can help make your visit with your legislator effective:

1. Try to schedule a visit your legislator in your hometown when there is no specific issue or crisis. Simply introduce yourself as a constituent and your child, if possible, and briefly share your story. If you can’t take your child, a picture would be helpful.

2. Keep you visit brief, be prepared, and be clear. Practice before you go and stick to the topic.

3. Take time to listen to your legislator and to learn how he/she feels about the issue. If he/she is unclear on the issue, take the initiative and offer to send along resources or more information.

4. Seek ways to keep the relationship going. Send a thank-you note and make it a point to say “hello” when at any shared function, visit the statehouse, and keep in contact by email, mail or phone.

If you need guidance telling your story to others, please contact us at 317 944 8982 or info@fvindiana.org and we’re happy to help!

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