Advocacy has been at the core of Gillette Children’s from its start in 1897. Arthur Gillette, MD, and Jessie Haskins went to the Minnesota legislature and advocated for the creation of the nation’s first hospital dedicated to care for children with disabilities. 125 years later, Gillette Children’s continues to be a beacon of light for children with complex brain, bone and movement conditions.
Gillette Children’s has an advocacy team whose mission is to make sure children, especially children with disabilities, are not overlooked as state and national lawmakers create the legislation that shapes our lives.
It Begins with An Idea
“Families can give us ideas for bills because they are the ones who are personally impacted. They help us identify problems and then we try to identify policy solutions” said Marnie Falk, JD, Director of Public Policy at Gillette Children’s.
Gillette Children’s advocacy team consists of three people: Marnie Falk, JD, Director of Public Policy; Jessica Tabbutt, MPA, Public Policy Coordinator; and Andrea Stoesz, MPH, Director of External Affairs.
During Minnesota’s 2022 legislative session the advocacy team worked on three bills aimed at tackling some of the problems facing families of children who need complex medical care, including HF 3199/SF 2772, a bill that would increase the number of paid personal care assistant (PCA) hours parents can provide for their children. The current 40-hour limit does not consider the number of parents providing care in the household, the number of people needing services in the household or the type of services the individual receiving care is eligible for.
“A social worker told us about the parents of two children who need 24-hour care. They were having trouble finding PCA workers, and the two parents were only paid for a combined 40-hours for providing medical care around the clock,” said Jessica Tabbutt, Public Policy Coordinator for Gillette Children’s.
The social worker recognized the 40-hour cap puts some families in a tight spot because the demands of the child’s medical care can keep parents or guardians from working outside of the house. Gillette Children’s advocacy team conceptualized ways to help this family and recognized that increasing the limit would be helpful in filling that care gap for many families across the state. From there, the team began coalition building.
“We like to build a coalition and start brainstorming how to translate this into language that we can move forward to a bill. Next, we reach out to find an elected official, who really believes in Gillette Children’s and our mission to help improve lives, to author the bill," said Falk.
Gillette Children’s has formal and informal partnerships with numerous organizations locally and nationally. The team worked with more than six other groups for HF 626/SF 464, the bill which would allow families to seek treatment for the diagnosis and treatment of rare diseases without financial penalties for going out-of-network. The bill did not pass during the 2022 legislative session, but thanks to the coalition building, it has bipartisan support, and the chief author remains committed and plans to
bring it back next year.
“There was a lot of work done on that bill to shape it to a way that was comfortable for both Democrats and Republicans,” said Tabbutt. “Hopefully, we’ll have the same support next year, and we’ll keep chipping away to get this passed.”
Fueled By Stories
The involvement of families in sharing their lived experiences is crucial to the advocacy team. In May, the advocacy team hosted Gillette Children’s Virtual Day at the Capitol to celebrate 125 years of Gillette, and to give lawmakers a look at the community who will benefit from the work they do every day to make this state better. Three families shared their stories for that event.
The Holley and Clausnitzer families are joining the team for Family Advocacy Week, a national campaign designed around elevating public awareness about the work of children’s hospitals and policy issues impacting America's children.
“I love bringing families to meetings with me to really explain the real-life impact that a bill is going to have on them. That is always when we are most successful. said Andrea Stoesz, Director of External Affairs. “If lawmakers and their staff hear it from people with lived experience, it is more likely to make a difference because they’re really understanding how their vote or support is going to impact someone’s life.”
When families become champions for an idea or a piece of legislation, their help is invaluable. Some people share their stories on handouts that the advocacy team distributes to lawmakers. Others have participated in virtual roundtable discussions with Minnesota’s governor and lieutenant governor.
“I really encourage people to reach out to us, even if they have an issue, they think only impacts them. It is rare that an issue is limited to just one patient or family,“ said Stoesz.
Life Outside the Hospital
In addition to making sure lawmakers know about the medical needs of our community, our advocacy team works alongside families to make sure their children are not excluded from simple joys such as playing at a playground. During the 2022 legislative session our team joined a coalition supporting state bonding requests for inclusive playgrounds in Apple Valley (HF 3348/SF 3039) and Fridley (HF 4202/SF 3927).
“We want to see more inclusive playgrounds across our state that accommodate physical disabilities as well as the unique needs of children with intellectual or developmental disabilities,” said Falk.
Among other things, inclusive parks would include things that would be helpful for all children such as fencing, separation from water hazards and physical barriers on busy streets to keep children safe.
“I know that Gillette makes a difference, and I want to make a difference, too, for the patients and families,” said Falk.
Advocacy is part of Gillette Children’s care model. As the medical teams work to help each patient reach their possible, the advocacy team is working to make sure their rights and needs are respected.