Jim Ross receives the Epilepsy Foundation's 2017 Sara Stubblefield Advocacy Award
In 2011, Jim Ross and his wife Victoria were preparing for their son Emmett to begin riding the bus to school. While most families are concerned about their child riding the bus for the first time, Jim and Victoria had an additional worry: Emmett has epilepsy and he could need access to emergency epilepsy medication on the bus. The school couldn’t provide a nurse who could ride on Emmett’s bus, and so the Ross family started searching for alternatives so Emmett could ride the bus with his peers. This was the beginning of their advocacy journey to allow trained, nonmedical school personnel to administer emergency anti-seizure medications when a nurse is unavailable.
When Jim and Victoria first embarked on this journey in 2011, they knew very little about the legislative process and how to get a bill introduced and passed. But that didn’t stop Jim, and he started reaching out to legislators. Jim convinced his own Representative Steinberg to introduce a bill, and also found a partner in Representative Kim Fawcett who heard his story and wanted to act. Representative Fawcett introduced legislation in 2012 and Jim began working in earnest to get this important bill passed.Eventually, Jim testified before the Connecticut Public Health Committee and encouraged legislators to allow individuals other than nurses to administer emergency medications to those with epilepsy.
This first piece of legislation did not pass, but Jim and his family received great news during the year. The school district agreed to have a nurse ride on Emmett’s bus. Even though their own personal fight was now over, they couldn’t give up and were determined to change the law to help all families in Connecticut who have a school-age child living with epilepsy.
As Jim and Victoria learned more about the legislative process, they began recruiting grassroots volunteers to help them share their message. Most importantly, they began taking slow but steady steps to work with opponents of their bill. The legislation was again reintroduced in 2013 and 2014, and each year the language got stronger and gained more support. To become a better advocate, Jim pursued a year-long course sponsored by the Council on Developmental Disabilities called Partners in Policymaking, which he credits with having taught him how to be an effective advocate and navigate the complexities of the legislative process.
Jim was eventually able to sit down with leadership in the legislature and the Association of School Nurses who had opposed the legislation in the past. They were able to work together to create a bill that both could support and that would allow trained, nonmedical school personnel to administer emergency anti-seizure medications. With this new partnership, the strength of their grassroots network, and support from the Epilepsy Foundation, Jim and his legislative allies reintroduced their legislation in 2015. The bill again stalled, but Jim and Representative Jonathan Steinberg were able to craft an amendment to House Bill 7023 that was adopted. As HB 7023 moved forward, so did the chance that children living with epilepsy and attending school would have better access to emergency medications.
In turned our 2015 was the year, and HB 7023 cleared the legislature and was signed in to law on June 30. Such an achievement wouldn’t have been possible without Jim, Victoria, Emmett, and their daughter Olivia. This was a great grassroots achievement that is due to two determined parents. As Jim remarked, “it started with a little boy…and became a much bigger thing.”