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This page was last modified on : 09/07/2011 |
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Family and Youth Leadership
Introduction This page provides information and links for families and youth with special health care needs who would like to join with others to improve services for children, youth and families in Washington State.
There are many opportunities to use what you have learned from your own experience to make things easier for other families. Whether you already feel comfortable taking a leadership role or are just starting to think about getting involved, you can make a difference. There are many ways to you can improve services, including:
You are the expert on your own child and family and the constant in your child's life. Together with other families and service providers you can make the health care and community service systems more responsive to families with special health care needs. In fact, three of the national and state goals for children and youth with special health care needs require family leadership and input to be successful:
"Family members, including those representative of the culturally diverse communities served, must have a meaningful, enduring, and leading role in the development of systems at all levels of policy, programs, and practice. Family voices must be heard and families should be at each table in which decision making occurs. Thus, the involvement of families is a key indicator of systems development. "--US Maternal and Child Health Bureau Talk to other parents and families, join a parent group or electronic listserv, and ask your doctors and other health care providers what the issues are for them. Read Exceptional Parent magazine, sign up for a free e-newsletter, and consider attending conferences or trainings to learn more about health care for your child. Partner with Your Child's Health Care Providers Share information with your child's doctor about your experiences with medical specialists, early intervention programs, school services etc. so they learn what sorts of services are available in the community, the benefits to families as well as the experience their patients have with particular providers or services. The brochure Building Early Intervention Partnerships With Your Child's Doctor (available in Spanish and other languages) has tips for building a strong relationship with your child's doctor as well as how to educate doctors and others about the benefits of early intervention for your family and others. Some doctor's offices and clinics are starting Family Advisory Groups to help the practice improve their services for patients. For example, Skagit Pediatrics in Mt. Vernon has a Family Advisory Group composed of both families who have children with special health care needs and those who are typically developing. Some hospitals and early intervention centers also have Family and/or Community Advisory Groups. For example, Seattle Children's Hospital in Seattle has a Family Advisory Council made up of parents who serve in an advisory role for the hospital. Parents provide feedback on proposed policy, programmatic and organizational changes that impact the family experience at Children’s. Ask how you can be involved. If you have learned a lot about a particular area that you think other families would benefit from, you can tell your child's doctor or other service providers that you are willing to be a resource for other families to talk to informally. For example, you might have a lot of experience and comfort now with assistive communication devices for your child who is nonverbal, or knowledge about where to find safe food products for your child with multiple life threatening food allergies. Become a Helping Parent in a Support Group Consider becoming a Helping Parent for other parents with a new diagnosis who are just beginning their journey with special health care needs. Support groups, such as Parent to Parent and the Fathers Network, offer training for experienced parents who would like to provide support to other families. Read or listen to an interview with Beverley Johnson, President of the Institute for Family Centered Care about the importance of family-centered care and her thoughts on how to get there. From the Institute for Healthcare Improvement, "Profiles in Improvement: Beverley Johnson, Institute for Family-Centered Care." There are many ways you as a family member can improve medical homes as an advocate for change at the community or state level. Here are some examples: Washington State Medical Home Leadership Network Many counties in Washington State have a Medical Home Leadership Network team of parents and health care providers working together to improve medical homes locally. To see if your county has a team, check the team list; to see what types of activities teams are involved with, check the Community Activities page. For information about starting a new team, contact Kate Orville at medhome.org or 206-685-1279. Family Voices The Washington State Chapter of Family Voices has contact information for the state Family Voices coordinators and resources. Visit their website. The national Family Voices organization has many resources for family leaders on their website. They also have a free weekly e-newsletter called Friday's Child which contains information for existing and emerging family leaders on topics such as leadership, mentoring, partnering and team building.
Washington Family to Family Network Washington Family to Family Network (WFFN) is a network of family organizations and family-focused agencies working together with the Dept. of Health-Children with Special Health Care Needs Program. Members include: family leaders from the WISE grant, Parent to Parent, the Fathers Network, Family Voices, PAVE, the Infant Toddler Early Intervention Program, cultural competency expert Ginger Kwan, the Medical Home Leadership Network, and the Center for Children with Special Health Care Needs. WFFN has sponsored Leadership Conferences for new and emerging family leaders. For more information, contact the Family Consultant for the Washington State Department of Health Children with Special Health Care Needs Program at cshcn.support@doh.wa.gov or 360-236-3571. Practical Tips: Involving Family Consultants in Program and Policy Development
Disability Advocacy/Community Advisory Groups Get involved with advocacy groups or planning groups for children or people with special needs locally: The ARC of Washington
County Interagency Coordinating Councils (CICCs)
Additional Resources
Youth Leadership Opportunities Washington State Youth Leadership Forum for Students with Disabilities
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