Parents Sought for Ongoing Feedback
The Northern Regional Children and Youth with Special Health Care Needs (CYSHCN) Center is wanting to provide parents/caregivers with opportunities to network with other parent leaders to improve the lives of children with disabilities/ special health care needs. We also want parents to let us know what is working and what is not. We would appreciate suggestions on additional training and programs. Additionally, these meetings will be an avenue for staff to provide updates on projects that we are developing and receive feedback.
We are looking for:
- Parents/ primary caregivers of children with special health care needs and/or disabilities under age 22
- Live in the 15 counties that are a part of the Northern Regional Center services area. 3 separate networks will be set up so that travel will be minimized once we start meeting in person. A Zoom option will always be available as well.
- Are willing to provide feedback and suggestions on CYSHCN supports and services
We will hold these meetings 2-3 times a year. If in-person, dinner will be provided and parents can receive a gas card for mileage reimbursement if needed.
If you are interested in participating or want more information, contact Allison Lourash at 715-261-1933 or via email at Allison.firstname.lastname@example.org.
Family Leadership and Advocacy
Our partner, Family Voices of Wisconsin, has information on their website on how to advocate including attending Advocacy for Change at the capital and becoming a part of the Family Action Network: familyvoiceswi.org/family_leadership/
Join the Family Action Network Listserv – New members can join by sending an email to email@example.com. The Family Action Network is a group that connects families who have children with disabilities and special health care needs to issues of interest. Learn about advocacy, training and leadership opportunities and become informed about policy and legislative changes that could impact children and families. FAN is a collaboration between Family Voices of Wisconsin – Waisman Center – University Center for Developmental Disabilities, Disability Rights Wisconsin, and the Wisconsin Board for People with Developmental Disabilities.
Have you ever thought about joining a committee or board to make a difference for children?
- Becoming a Family Leader
- Serving on Groups that Make Decisions: ServingOnGroups.org
- Family Voices has a list of state-Level Committees and Councils that Include Families and Focus on Children and Families, Disabilities, and/or Long Term Support here: familyvoiceswi.org/family_leadership/
Other Ways to Advocate as well as learn about legislation and policy
- The Wisconsin Board for People with Development Disabilities BPDD Partners in Policymaking Training: a six-session advocacy and systems change training program designed to develop a group of future leaders across the state, who are able to work with legislators and communities on policies and initiatives that will support the full participation and inclusion of people with developmental disabilities in all aspects of life. Partners in Policymaking is designed for adults with developmental disabilities and family members of children and youth with developmental disabilities ages birth to 21. wi-bpdd.org/index.php/partners-in-policymaking/
- The Genetic Alliance “engages individuals, families, and communities to transform health”. Their Advocacy Atlas includes information on legislation and policy here.
- Advocacy for Change: an opportunity to connect with legislators in Madison along with other families. Occurs every spring.
- Survival Coalition: The Survival Coalition of Wisconsin Disability Organizations is a cross-disability coalition of more than 40 state and local organizations and groups. For more than 20 years, Survival has been focused on changing and improving policies and practices that support people with disabilities of all ages to be full participants in community life. You can sign up for their email alerts on their website.
- Connecting with your local Center for Independent Living. Wisconsin ILCs are community-based, consumer-directed, not for profit organizations, Independent Living Centers are nonresidential organizations serving persons of any age with any disabilities in all 72 counties. Unique in the world of human services, ILCs are governed and operated by board and staff composed of a majority of people with disabilities. All ILCs provide five core services, which include: Information and Referral, Peer Support, Individual and Systems Advocacy, Integration to Community life for people with significant disabilities. A list of the 8 centers in Wisconsin are listed here: www.dhs.wisconsin.gov/disabilities/physical/ilcs-contact.htm
- The Arc of Wisconsin also hosts webinars and call-in meetings to provide up to date information for families on current policy changes: arcwi.org/public-policy/.
Your Input is Valuable- please fill out our survey regarding Family, Youth, and Community Engagement here.