Raising the Voice of Ohio's Families

November 21, 2016

Advocacy isn’t always easy to explain. It isn’t a product like a bicycle helmet or a service like home visiting. Advocacy is about connecting the dots; it’s about looking at how process impacts results; it’s about raising the voices of families and sharing their stories with the right people and the right systems to identify trends and make changes that will benefit the whole community.

 

Amber, a young mother of three, came home one day last April to find her son, Torian, lying on the couch—which was unusual for the energetic 11-year-old. Torian’s chest was tight and he was struggling to breathe. That morning, he had gone to the school nurse who told him he was fine and should return to class. But, Torian was clearly not fine. Diagnosed with Asthma at age five, Torian takes four daily medications to keep his asthma at bay. But, sometimes he suffers an attack that requires an emergency inhaler. Otherwise, his symptoms worsen exponentially, which is exactly what happened. Amber rushed him to Nationwide Children’s Hospital, where he stayed for the next five days.

 

Amber searched for answers. She thought she had done everything right: she provided Torian’s school with an epi-pen, emergency inhaler, and multiple ways to contact her. The problem, however, was bigger than Amber and her son. At the time, more than 75 percent of Ohio families whose child was diagnosed with asthma had not supplied their schools with inhalers. Some parents couldn’t afford a spare brand-name albuterol inhaler (there are no generics) to give over to the school and others didn’t even know this was the protocol. In addition, school nurses—whose availability can vary—were the only staff members allowed to administer an inhaler and only if it was specifically prescribed to the child. So, schools were in the habit of assuming there would be no inhaler available and gauged an asthma attack based on whether or not it seemed like an emergency necessitating EMS. Kids waited and suffered through their attacks, classes were interrupted, EMS were diverted from other emergencies, and school personnel stood by helpless.

 

The problem was growing and last year, it caught the attention of the Ohio General Assembly. When the Voices Team met Amber and heard her story, we introduced her to House Bill 39, a policy that would allow schools to stock inhalers for emergencies and provide guidelines for their use. Amber wanted to testify. She had never done anything like that. So, we walked her through the process, showed her sample testimonies, and connected her with the bill’s sponsor. She testified before a Senate Health and Human Services Committee in September 2015, eliciting understanding and concern among committee members that there was “more to do.” The bill was signed into law on November 2nd.  

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