Children and Youth with Special Health Care Needs
Family Support and Leadership image

Family Support and Leadership

Southern Regional Family Support and Educational Gatherings

Spark!
October 9, 2019 from 6:30pm-8:30pm
Kromrey Middle School, Middleton

What’s Happening in Special Education with Barb Buffington, Director of Student Services. Room 506
Let’s Talk Advocacy Teen Group (13+) 5th grade collaboration space

RSVP at SPARKMiddletonWI@gmail.com   www.SparkMiddletonWI.com

SPARRK (Special Parents Advocating for Rights Resources and Knowledge in SW WI)
October 20, 2019  12:30pm-2:30pm
Hodan Community Services Cafeteria, Mineral Point

Regular Meeting

For more information visit their Facebook page

Spark!
October 26th 9am-10:30am
Coffee and connections
Common Ground 2644 Branch Street in Middleton

Autism Society South Central Wisconsin:  RSVP and more information at ASSCW events page.

October 15, 2019 6:30pm-8:00pm
Parents Night Out in Sauk County
Vintage Brewery Co, Sauk Prairie

October 17, 2019 5:30pm-7:30pm
Autism 101 Workshop
Portage High School, Portage

October 20, 2019 12:30pm doors open
Band Together for Autism 2019 (Benefit)
High Noon Saloon, Madison

Family Support

If you have questions about family to family support, please contact the regional center at 800-532-3321.

  • CaringBridge can help ease the stress many parents have when their child is in the hospital for an extended period. CaringBridge allows families to set up a website about their child where they can post updates and photos. 
  • Family Voices of Wisconsin is a network of Wisconsin families with children or youth with special health care needs and those who work on their behalf. The group focuses on health care access, coverage and community supports. Go to Family Voices of WI Training Calendar.
  • Parent-to-Parent of Wisconsin provides parent support to parents and other caregivers through a one-on-one connection to another parent with a similar experience who knows firsthand about the feelings and realities of having a child with special health care needs. When parents of children with special health care needs are asked who best can support them emotionally, their first choice is other parents who had a similar experience.
  • Support Groups Talking with other parents can be a big help when you are raising a child or youth with a special health care need. Please contact the center at 800-532-3321 for more information on specific support groups within the Southern Region.
  • WisconSibs provides support to siblings of children or youth with special health care needs. The group offers peer support programs, resources, social activities and leadership opportunities.

Family Leadership

Family Leader is someone who has personal experience in using resources or services to strengthen his or her family and speaks and acts from their perspective as a family member. This person might serve as a role model or advocate for other families, sit on an advisory board, belong to a peer review team, testify at public hearings, or lead in other ways. (Parents Anonymous Inc.) By participating in family support and leadership-building activities, families gain knowledge and skills needed to be effective supports for themselves and family members. The voice is critical in the system of care to be the best it can be.

Family to Family Programs

Family Voices of Wisconsin is a network of Wisconsin families with children or youth with special health care needs and those who work on their behalf. They have some information on how to tell your story, opportunities to serve and learn and more.

Parent-to-Parent of Wisconsin provides trains parents to other parents and other caregivers through a one-on-one connection.

Wisconsin Family Ties is a statewide, parent-run organization in Wisconsin working with families that include children with social, emotional or behavioral challenges. They walk beside families to provide emotional support while helping to navigate the complex service and treatment systems with which they are involved.

Wisconsin Family Assistance Center for Education, Training and Support (WI FACETS) mission is to provide and broaden opportunities that enhance the quality of life for children and adults with disabilities and their families, with emphasis on support for underserved families in the community. They offer a number of different training workshops as well as a Parent Leader Program.

Wisconsin Statewide Parent-Educator Initiative (WSPEI) goal is to help families and school districts  find or create the resources that will help them bring positive working relationships that lead to share decision-making and better outcomes for the student. They offer training for parents and a District Family Engagement Liaison Program.

Leadership Development Opportunities

Parents in Partnership (PIP): PIP participants are family members who care for children with disabilities age 6-14. They are held 5 weekends during the year (you must attend all weekends). They learn about the community and statewide resources for children with disabilities; explore issues around health, education, policy making, legislation, inclusion, self-determination, family well-being, and IDEA Special Education Law.

Youth in Partnership with Parents for Empowerment (YiPPE): YiPPE participants are youth (ages 15-20) and their parents (primary caregivers).  They are held 5 weekends during the year (you must attend all weekends). Together families learn about employment, education, inclusion, health care,  adult services and more.

Wisconsin Partners in Policymaking: This program funded by the Board of People with Developmental Disabilities teaches every person who goes through the program, the knowledge, tools, and confidence necessary to make an impact in their community.

Getting informed and involved

The Family Action Network (FAN) is a distributed email list connecting families who have children with special health care needs to issues surrounding special health care needs. Through FAN, parents can learn about advocacy, training, leadership opportunities and become informed about policy and legislative changes that may influence their children and families. To join, send a blank email to join-fan@lists.wisc.edu

The Family Engagement Newsletter is a resource for families, schools, and agencies to go to for family engagement news, success stories, recent research, statewide events, and online resources. To join, please fill out the registration form.

The Southern Regional Center Wisclist provides an opportunity for families in the south and southwestern regions of Wisconsin to stay informed of training and workshops in the area. To join, send a blank email to join-src4family@lists.wisc.edu.

Family Voices of Wisconsin regularly distributes newsletters on a variety of topics that impact families with children with Special Health Care Needs. To sign up, contact Lynn at lynn@fvofwi.org

Siblings

Wisconsibs works to connect siblings with resources for their lifelong journey through peer support programs, education, networking opportunities, leadership development and more.

Sibling Support Project is a national program dedicated to the life-long concerns of millions of brothers and sisters of people with special health, developmental and mental health concerns.

Youth Self-Advocates

Wisconsin Youth First: a website for youth, by youth!

Kids As Self Advocates (KASA): a national project by youth with disabilities for youth.

National Youth Leadership Network (NYLN): a blog for youth leaders

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