Projects & Activities

Projects

Wisconsin Family to Family Health Information and Education Network: In the Fall of 2003, Family Voices of Wisconsin was awarded a grant from the Centers for Medicare & Medicaid Services to plan and create a Family-to-Family Health Care Information and Education Center. Currently, Family Voices has a grant from the Maternal and Child Health Bureau, US Department of Health and Human Services, to continue work as Wisconsin’s Family to Family Health Information and Education Network. This funding allows us to provide trainings, educational materials development and distribution, advocacy and leadership opportunities, as well as other activities to work directly with parents and family members who have children and youth with special health care needs and/or disabilities , along with the providers who serve these children and families.
Cultural Consultants - Working with Diverse Populations: Through our work with families around Wisconsin, we have learned that many individuals from underrepresented groups prefer to learn and acquire new information from trusted members of their communities. Since Family Voices has a commitment to getting information to members of diverse communities, we have enlisted the assistance of three Cultural Liaisons. These consultants are working with Family Voices to help families better understand the way services for children and youth with special health care needs are organized in Wisconsin and how best to access and maximize benefits offered through these supports. To date, we have held listening sessions, adapted the “Did You Know? Now You Know!” training curriculum to be culturally relevant and understandable, translated this curriculum, and have presented trainings to family members from these diverse populations. Our work is currently centered in Milwaukee, working with African American and Latino populations, and on the Red Cliff Reservation in northern Wisconsin.

Activities

Advocacy and Public Policy: Family Voices of Wisconsin is a leader in working with state policy makers to improve access to health care and community-based services for children and youth with special health care needs and/or disabilities. We develop policy briefs and other materials on issues important to children with special health care needs. One area of focus during the last four years has been ending waiting lists for children’s long term support services. As a result of our advocacy, in partnership with other organizations, the 2009-2011 Wisconsin state budget contains funding to increase the number of children's long-term support waiver slots by 1000 over the next 4 years, which decreases waiting lists.

We assist in bringing the voice of families to organizations and policy makers by holding listening sessions and focus groups. In addition, Family Voices regularly surveys families to determine the barriers they face to receiving services and supports for their children. We communicate with state and national policy makers and bring these issues to their attention.
Trainings: Family Voices of Wisconsin provides training on a variety of topics related to health care and community supports for children and youth with special health care needs. Our trainings range from 30- minute sessions on parent advocacy to two- day intensive trainings on leadership development.

“Did You Know? Now You Know!” Trainings: Since 2005, Family Voices has presented 64 “Did You Know” trainings in communities throughout Wisconsin , reaching more than 650 individuals. These trainings are presented by Parent Trainers, who are parents of children with special health care needs. Increasingly, providers have been attending as much as parents and grandparents. To meet the increasing demand for providers and other professionals who want to receive our training, Family Voices prepared a three-hour webcast of a modified “Did You Know” training. This training is archived on the Department of Health Services website and can be accessed most easily from the Family Voices of Wisconsin website.
Parent Leadership: Family Voices of Wisconsin provides leadership opportunities for parents and family members. One example was our 2009 Advocacy for Change Parent Leadership event.

In late March 2009, 26 parents/grandparents of children with special health care needs and/or disabilities gathered in Madison for two intensive days of advocacy training hosted by Family Voices of Wisconsin, in collaboration with the Survival Coalition, Wisconsin Board for People with Developmental Disabilities, Wisconsin FACETS, Wisconsin Family Ties, and Disability Rights Wisconsin. Advocacy for Change: A Parent Leadership Institute provided a unique opportunity for these parents/grandparents to learn about effective communication with policy makers, about the state budget process and about the importance of starting and maintaining on-going relationships with state legislators in order to impact critical policy decisions related to CYSHCN. After practicing their message with each other, Family Voices staff escorted Institute participants to the State Capitol and each parent met with their State Senator and their State Representative. Participants connected with 21 State Senators and 20 Assembly Representatives.

For most participants, the Institute was their first experience meeting one-on-one with state legislators. Many commented that the advocacy training made them feel more confident and empowered and less nervous about meeting with their policy makers. It took away the intimidation factor. Participants appreciated learning from guest facilitator Nancy Amidei and then having time to clarify their message, think about their priorities and talk to other parents/grandparents who had similar experiences being a parent of a child with a disability. When interviewed several weeks after the Institute, the majority of participants stated that they had already used their new advocacy and communication skills. Several testified at Joint Finance hearings, many had been in contact with their State Legislators, two parents had been in contact with school officials and one contacted her county to volunteer as a county parent liaison. As part of the Institute, Family Voices of Wisconsin provided a binder of background information, including “Issue Briefs” on various legislative issues. Most participants noted that the binder was extremely helpful and they had or planned to share the materials with other families in their community and with colleagues.
Publications: Family Voices of Wisconsin publishes a newsletter 3 times per year and it is mailed to approximately 1200 families, professionals and policy makers around Wisconsin. For an electronic version of the newsletter and to view archived newsletters, go to “Publications.” Information on other publications, handout and fact sheets developed by Family Voices can be accessed by going to Resource Materials.
Consultation Services to Organizations/Agencies: Family Voices of Wisconsin staff is available to work as consultants with agencies and organizations. We can develop trainings, create and/or review educational materials, conduct listening sessions and focus groups or work one-on-one with policy makers. For more information go to “Our Services.”