Frontline Initiative: Advocacy and Voting
The Voices of Ordinary Citizens Make Change Happen
Laurie Spezzano
I’m sharing my memories of how a group of families in my state worked together to get an Autism Training Center established and funded. We hope our story may inspire other families to accomplish goals they may believe are beyond their reach.
We were amateurs
If you look around and realize no one in your group is a political consultant, paid advocate, head of an agency that serves people with disabilities, or politician, don’t let that slow you down.
You can borrow expertise.
Many of us have been told by professionals, “You are the expert on your child.” That is true.
Nobody knows your loved one better than you, and no one is more passionate about meeting their needs. Now you need to extend the reach of that knowledge and passion by enlisting the help of those who know “the system” and how to get it to work for you.
I once attended a customer service training, where we learned a magic phrase: “Maybe you can help me out.”
I once attended a customer service training, where we learned a magic phrase: “Maybe you can help me out.”
We were told that most people are flattered and motivated when you sincerely ask them for help. It means you think they know more than you, and that you trust them to give you advice or help you solve a problem. I have found this to be true in many facets of life, beyond customer service.
Don’t be afraid to copy others
A few of the parents in our autism support group went to a national Autism Society of America conference. It was educational and fun, and we all came back with new ideas and new resources to use. But one small interaction would have a huge impact on our state. We just didn’t know it yet.
My friend Beth attended a presentation by the families and board of the West Virginia Autism Training Center. She was so inspired by their story and had a conversation with their first Director. She came home with a copy of the bill that was written to create and fund the center. The Kentucky Autism Training Center (KATC) is a program with a legislative mandate to enhance outcomes for all Kentuckians with ASD. KATC supports individuals with autism spectrum disorder (ASD) by providing hands-on training for educators in the classroom, hosting workshops for families, and professional development training for the systems of support for individuals with ASD in education, early childhood, mental health, employment, first responders, and recreation. KATC’s outreach through the development and dissemination of resource materials, a YouTube channel and other evidence-based information makes the community more welcoming for people with autism.
A few months later, some of us attended the “legislative breakfast” that is held before the legislative session in Frankfort, which is the state capital of Kentucky. We had been encouraged by other special needs groups to do this because you sit with your representatives in a casual setting where they get to know their constituents and you can have personal conversations about your hopes and needs. Beth spoke with her legislator, Bob Heleringer, about West Virginia’s autism center, and our hopes to get one for Kentucky. He politely said he’d like to see their bill sometime. Beth pulled a copy out of her pocket and handed it to him. Be prepared!
Within a few weeks, Beth received a call from Bob’s office telling her to bring a group to Frankfort because he was going to introduce our bill. He had given her copy to the Legislative Research Commission, which helps draft bills for the legislators, and it was quickly written up. What we thought would take months or years to possibly happen was happening now!
We learned that if you can “fly under the radar” by asking for something that’s NOT the big agenda item, legislators are eager to look good and do good by passing laws that meet the needs of the citizens.
Your state legislators and agencies really do want to serve you
Although we hear a lot about the “hot topics” in each legislative session, your representatives do know that you elected them, and they represent you and your family. We learned that if you can “fly under the radar” by asking for something that’s NOT the big agenda item, legislators are eager to look good and do good by passing laws that meet the needs of the citizens. Many commonsense issues are truly bipartisan and serve a real purpose beyond just trying to win an election. They make up most of the work done by state government.
Who can give you the inside scoop?
Our main goal was to benefit people with autism, their loved ones, and the professionals who work with them. Our interests overlapped with others in the state: Groups advocating for mental health, intellectual disabilities, the elderly, and others had succeeded or were working on similar issues. I remember one high-profile advocate who repeatedly emphasized that we should support one another, rather than be competitive. He said it is important to resist being pushed to “fight over crumbs” in the state budget. It helped to network with other groups by attending their events or meeting with members to exchange ideas and be supportive.
Some tips we got were that the phone messages (pink slips) we left on the Legislative Message Line were much more effective than emails or letters. Our representatives counted them every day. Representatives are usually willing to meet briefly in their office with a few constituents if you make an appointment. Requests for advice works better than threats not to vote for them. In Kentucky at least, if you can get the bill voted out of committee, it will often be passed unanimously, so reach out to find contacts in the committee controlling your bill. Someone already knows which representatives are receptive to your issues. It may be they have a family member with the same needs. Those staffers can shepherd you through the process. Work your contacts as if you were on a job search.
Things take time
Once our bill was introduced, we were told we needed to continue advocating to get it through the committee and get it passed. Different families made follow up visits to representatives to encourage them to vote for it. A couple of staffers stayed on top to let us know when the bill would be read again or someone needed to testify about our issues, as sometimes the legislative session made sudden schedule changes. We took turns to see who could get off work and run down to Frankfort on short notice.
We learned to not rely only on sympathy for our “poor children,” as representatives are inundated with similar appeals. Some of us talked about practical considerations, like how the center would save money for the state in the long run.
My favorite approach took advantage of the egos and pride of our reps. Kentucky is often near the bottom in key ratings among the states, like poverty and education, competing with states like Mississippi and West Virginia in comparisons. “Even West Virginia has an autism center” became an effective talking point.
Stay in the game, and support other leaders to help carry on.
Once the bill became law, our work was not finished. Advocacy was needed to get and keep funding each budget year, and to influence writing regulations. We learned a little more than I liked to know about state and university politics, which often came into play.
As time went on, more members of our Autism Society chapter and others around the state became involved in the mission of maintaining and improving the Kentucky Autism Training Center, including serving on its advisory board, which was included in the law. The newer parents have made major contributions over the years, allowing the “original Moms” to move to the sidelines.
The work we have done has been worth the effort
Direct support professionals partner with the families to provide a better quality of life for our loved ones. Especially as our “kids” get older, they rely on DSPs for stability while expanding their lives beyond living at home and relying only on mom and dad to meet their needs. We are often challenged in efforts to find and keep quality DSPs.
I hope DSPs will be inspired to speak up for their needs, so they can afford to continue to work with our loved ones. Let your representatives know how low wages and lack of recognition for your professionalism make it difficult to continue serving our families and the community. Tell your story to friends and neighbors. Ask them to reach out, along with the people you support, to get your government to make the needed changes.
Your voice counts and teaming up with the families of those you support can benefit us all.