Print Friendly

On This Page

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.

Leadership

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:

  • Educating your child’s doctor about the needs of your own child and those like her
  • Providing formal or informal emotional support to other parents
  • Advocating for system and policy changes

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:

  1. All children with special health care needs will receive coordinated ongoing comprehensive care within a medical home (there is no medical home without partnership)
  2. Services for children with special health care needs and their families will be organized in ways that families can use them easily
  3. Families of children with special health care needs will partner in decision making at all levels, and will be satisfied with the services they receive.

“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

Learn More About the Issues

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. 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.

Work for Systems Change

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.

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.

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
    Promotes the education, health, self-sufficiency, self-advocacy, inclusion and choices of individuals with developmental disabilities and their families state office and 11 local chapters

Additional Resources