legislative advocacy committee
The Illinois Spina Bifida Legislative Advocacy Committee is a dedicated group comprised of parents, caregivers, and individuals living with spina bifida. We are an ambitious group united by a common goal: ensuring that those living with spina bifida have every opportunity to lead successful and fulfilling lives.
Recognizing the need for crucial changes, we actively engage in legislative initiatives to enhance the well-being of our community members.
Join us in our mission to create a more inclusive and supportive environment for families and individuals living with spina bifida.
Committee Goals
Katie Becket Waiver
The Katie Beckett waiver allows children with disabilities to receive Medicaid as a secondary insurance in their homes, regardless of their parents’ income.
Disability Placards
Thanks to our committee, families are now able to request a second disability placard for their vehicles. This will allow two caregivers to have their own placard.
Featured Success Story
Dena Fuller, a vendor at the Beardstown Fall Fun Festival, approves of the latex glove ban.
Chris Krohe, from Beardstown, IL, successfully led the advocacy for a ban on latex gloves. His motivation stemmed from personal experiences of severe latex allergies and despite a few setbacks. Krohe's dedication and collaborative efforts led to the passage of the Latex Glove Ban Act in Illinois.
Read more ISBA success stories here.
Committee members
If you are an Illinois resident interested in joining our Legislative Advocacy Committee, please email Becky Ziegler Rupnick at zieglerbecky@yahoo.com. Applicants will be asked to complete a short workshop with new members being accepted every June. Volunteers may serve on only one committee at a time.