#71 - Political Advocacy: Yes You Can!
The Little Lobbyists are families of children with complex medical needs and disabilities who seek to educate legislators about our community by showing up in-person with our children (and their trachs, ventilators, oxygen tanks, feeding tubes, wheelchairs, all the stuff) so they can see first-hand who is impacted by laws and programs. Most importantly, they want legislatures to see our kids are just KIDS; who go to school, love to play, and deserve access to the health care, education, and community inclusion they need to grow up to live their best lives. The Llittle Lobbyists also seek to educate families with complex medical needs about legislation that impacts us, and to empower us to be strong advocates.
In this episode, Laura gives us a pep talk to encourage and equip us to be voices for the disability community.
Mentioned in This Episode:
Laura’s background is one of creative consultant, adjunct professor, and mother but not professional lobbyist. Yet she and mothers like her form the leadership team of The Little Lobbyists, an advocacy group largely responsible for legislation in Washington moving in favor of those with disabilities.
Laura’s son, Simon, had a stroke in utero and fluid on the brain which required surgery shortly after birth. As he got older more diagnosis were added along with medical care needs and associated costs. One of her first motherhood memories was negotiating payment with a neurosurgeon so he would agree to preform a necessary brain surgery on her son.
The early years continued to be filled with financial worry as medical bills piled up along with a fear the lifetime cap would be met. When the Affordable Care Act passed all of these worries were elevated and allowed Laura to focus on Simon rather than if the next medical crisis would be the one to bankrupt the family. However, the peace was short lived as the leadership change in Washington brought a movement to repeal and dismantle the affordable care act.
For Laura and other families financially caring for a loved one with disabilities it was hard to again stress about medical care for their loved one and also to see legislators celebrating policies that moved toward repealing and replacing protections that gave families peace. For Laura, it felt like they were celebrating her future bankruptcy.
The Little Lobbyist were formed with a belief policy makers need to see there are real families and real children impacted by the policies they support. The approach is to bring their children (and their gtubes, trachs, ventilators, oxygen tanks, wheelchairs, etc) to meet the policy makers.
What is now a large advocacy group, simply started with a group of moms reaching out to legislatures and showing up at their offices.
Laura emphasizes that as a constituent, you have every right to meet with your legislature. It can be as easy as showing up and/or calling to make an appointment. It’s that simple! There is no need to feel intimidated.
Little Lobbyists keeps advocacy fun by doing activities such as trick or treating door to door at the offices of Senators. The kids have come to enjoy and are excited to see “their friends” on The Hill. Likewise, policy makers are able to see these are real kids who enjoy the same things as all kids and deserve the same access to a full life.
The kids are learning they have a voice and can speak up on the law making process. Visiting policy makers has become a natural part of their life and their confidence in the ability to express what they need is being cultivated. Self advocacy becomes a lifestyle for them.
The Little Lobbyists work hard behind the scenes to get to the heart of issues. They focus on what is impacting decisions rather than on personal opinions. Complicated issues are broken down and shared so families are equipped with information for effective advocacy.
Important to the advocacy style of The Little Lobbyists is staying family friendly. Importance is placed on listening, being polite, and staying nonpartisan even when it may be tempting to be confrontational. Relationships are important to The Little Lobbyist mission. Because of this, they are known as being an organization that can be trusted and where meaningful conversations take place.
Laura points out it is okay to be tired and take a break. At the same time, permanently disengaging from what is going on with policy is not a good option. Rather, just approach advocacy as another a thing we do. Make it a part of your regular routine to keep up with what disability organizations are sharing on social media and their newsletters.
Recognize your voice really does matter and there are a lot of ways to make it heard. Call, email, and foster relationships with local legislatures like school boards, city council, or state senators who are very accessible and want to hear from you.
Another easy entry into advocacy is to join organized events put on by disability groups. Most states have developmental disability days where participation is as simple as signing up and showing up.
The Little Lobbyists has a notebook filled with stories of families they share with state law makers. Often, legislatures will directly contact families in this notebook with questions about new legislation. To add your family story to the notebook fill out this form. To stay looped in with policy impacting the disability community visit the Little Lobbyist website, and follow them on your favorite social media platform.
#70 - Do This Not That: Lessons From a Self Advocate with Angela West
#69 - Self Determination with Complex Communication Needs with Dr. Karrie Shogren
#68 - The Need for Adult Sized Changing Tables with Changing Spaces
#67 - HCBS Waiver Settings Rule with Together for Choice
#61 & #62 - Inclusive Housing and Social Change with The Kelsey
Listen to Kim’s conversation about being a Reluctant Advocate on the Mama Bear Podcast from the January 14, 2019 episode. She shares 5 things she has learned over the years on how to be an advocate without loosing her soul.