On March 18th, members of Fox Valley Sibling Support Network (FVSSN), the Wisconsin sibling chapter of the SLN, held a Listening Session for siblings and their families to sit down with Congressman Reid Ribble. Siblings and their families shared their stories, their concerns, and their ideas for creating a better future for their loved ones with disabilities. FVSSN has developed a relationship with Congressman Ribble and his staff through previous meetings and discussions.
Harriet Redman, Executive Director of FVSSN, shared the following highlights from the meeting with Congressman Ribble:
“We had a full room of siblings and parents. The hour flew by with great discussions about the ABLE Act, the Family Medical Leave Inclusion Act, the Older Americans Act, the Keeping All Students Safe Act, and other concerns and ideas. Barbara Wentzel told her story about caring for Mary Beth, her 53 year-old sister, and finding appropriate support for her. She emphasized how important it is for siblings (she has another sister in Minnesota who must take off from work to help with care giving/service management) to pass the Family Medical Leave Inclusion Act. She also recognized that doctors told their family that her sister would not live past young adulthood and therefore, her parents didn’t do long-term planning. However, the ABLE Act would be very helpful to families today who are concerned about the long-term care and quality of life of their children and siblings.
Two other siblings also spoke about their experiences. Parents also spoke about the value of being able to save for long-term care expenses, concern about the impact of disability on their other children, employment options for their children with disabilities, and funding for special education and supports.”