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Your Voice Counts: Families Need to be at the Table

(#3 of 6 in Series)

Reviewed July 2024

Family advocacy has been at the center of improving the programs that serve children with disabilities. In 1982, Julie Beckett’s advocacy to have her daughter cared for at home, instead of the hospital, led to the creation of the Katie Beckett Medicaid program. In Wisconsin, family advocacy changed state laws to require parent notification when seclusion or restraint is used at school. Without family advocates, these changes would not have happened.



Your Voice Matters

As parents and family members, you can use your lived experiences to advocate for your children and others in your community. Let decision-makers know which programs and services are working and which ones need to be improved. Your advocacy can make these programs more effective and helpful for all families who have children with disabilities.

“If we don’t give our view and share our experiences, then do we have the right to complain about how it all turns out?”  ꟷA Family Advocate

Defining Systems Change: Systems change happens when there is a long-lasting change to a policy, a law or a program that affects many people. Systems change can be local or far-reaching. Julie Beckett’s advocacy to care for her daughter at home is far-reaching because it paved the way for many other families to do the same. Local systems change efforts include issues like advocating to have summer recreation programs to be more inclusive or offering your support to a proposal to increase pay for school district paraprofessionals.  



Families Have a Lot to Offer Decision-Makers

      • We live in these systems. Providers, educators and other professionals have expertise in their area of work. Families, on the other hand, understand how school and health care impact their children’s lives and how each fits in the community.
      • We know what works best for our children. Providers and other professionals must follow required rules and policies. But, as families, we know our children best and can decide which programs and services are needed for their continued growth and education.  
      • We have creative ideas to solve problems. The things our children need may be hard to find or may not exist in our communities, but families find ways to fill these needs on a budget! We are skilled at working around barriers, and we have a knack for problem solving. This know-how is valuable for decision-makers and other families facing similar challenges.
      • We see the inconsistencies that professionals may not. Our lived experience means that we see how supports and services work (or don’t work) for our family. This has shown us how to use these existing resources to their fullest and gives us insight into improving them for others.



Why is it Important to be Part of Systems Change?

Families must live with how decision-makers frame the programs our children rely on. This might be a change in school funding or a change to county services. If our families aren’t giving input to decision-makers on these vital programs, how will they understand the impact their choices make on families?



Communicating with Decision-Makers Has a Long-term Impact   

When families get involved, attend meetings, become committee members, and find ways to provide input, we develop relationships with professionals. These relationships are based on professionals accepting families as equal partners. Professional—family partnerships lead to improvements in programs and may lead to invitations to offer your feedback when the professionals or policymakers are faced with future decisions.



Ideas to Start Advocating for Systems Change

Serve on a committee or advisory group: There are opportunities to join committees or groups in your community—At your child’s school, your local hospital or clinic, your public library, or any agency or program where your child is involved. Many state-level committees and boards require that families are represented as members. To learn about these opportunities, go to familyvoiceswi.org/family-leadership and search “serving on committees.”

Speak at Public Meetings: Think about making a statement if your child’s school or your local government agency is talking about a policy change that impacts your family. There are different ways to get your input into the hands of decision-makers, like sending an email or speaking at a public hearing.

Communicate with Your Elected Officials: Get to know your elected officials and connect with them on a regular basis. This is especially important when legislators are making decisions about funding the programs in Wisconsin that affect families. Legislators in the Joint Finance Committee hold public hearings to get input on the state budget every-other-year in late March or early April. See the Wisconsin State Legislature’s website, legis.wisconsin.gov, for more information on this schedule.

Inform Local Media: Share your ideas with your local media. Send a letter to the editor, post information about upcoming meetings on social media, and call your local TV or radio stations with a story idea or the offer of an interview. These media outlets welcome community input.

Need a Mentor or Someone by Your Side?

If you would like support joining a committee, applying for membership on an advisory group, or getting more involved in family leadership in other ways, we are here to assist you! Contact Family Voices of Wisconsin and let us know what you need. Email Danielle@fvofwi.org


Wisconsin Wayfinder: Children’s Resource Network, 877-WiscWay (877-947-2929): Wisconsin Wayfinder offers families one name and phone number to find services for children with special health care needs. Wayfinder connects you to a resource guide at one of the five Children’s Resource Centers in your area.

Family Voices of Wisconsin, 2024©  |  familyvoiceswi.org

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