Advisory Committee Opportunity from the CYSHCNet Research Network

We’re interested in hearing from children and youth with special health care needs(CYSHCN) and anyone who supports them.

Whether you’re a young adult with special health care needs, a caregiver, a clinician, or you’re employed in the CYSHCN field, we want to hear from you!  Apply to participate in our Advisory Committee to help our researchers create studies that improve the health caresystem for CYSHCN and their families.

What you need to know:

  • Quarterly Zoom meetings with total time commitment of ~12 hours/year.
  • Lived experience partners (i.e., those who are or care for someone with a special health care need) receive $600/year for participating.
  • Clinicians and those otherwise employed in the CYSHCN field are invited to participate as volunteers.
  • Experience in one of the following areas is helpful but not required: caregiving, dissemination, research, policy work, health care financing, program development, clinical care for CYSHCN, legal skills, public relations, or communications.

Deadline for applications is August 10, 2023.

Learn more

CYSHCNET Advisory Committee Flier

Parent Institute for Engagement (PIE): Leadership and Lifelong Learning Now Recruiting

The Department of Children, Youth, and Families Early Support for Infants and Toddlers (ESIT) program is seeking parents/caregivers from a variety of backgrounds to participate in the State Interagency Coordinating Council (SICC) Parent Institute for Engagement (PIE): Leadership and Lifelong Learning.

PIE is a 12-month training program for parents/caregivers with children who have received early intervention services through the Early Support for Infants and Toddlers (ESIT) and primarily for those who are not currently working in the early intervention field. One spot is designated for a parent/caregiver working in the early intervention field. Our goal is to have a racially and geographically diverse group of participants.

Parents/Caregivers will learn about:
  • Robert’s Rules of Order (a framework commonly used in public meetings)
  • The State Interagency Coordinating Council and its role in advising and assisting ESIT
  • The early intervention system
  • Leadership and advocacy
  • Public speaking and presentation
Throughout this training institute, you may have opportunities to participate on SICC standing committees as parent representative openings become available.

Participants will enhance their leadership skills and have the opportunity to practice those skills to be great candidates for school boards and government bodies.

Application deadline:
August 4, 2023
Cohort 6 announced:
August 11, 2023

Learning to Advocate for All Children

As parents and caregivers, learning to effectively advocate for their children can be a difficult learning curve.  But once this is achieved, family leaders can reach out beyond their own family and advocate on behalf of many children who have special health care needs. While it may be daunting to step into that larger world, family voices are one of the most powerful forces for change in our society. Here are some tools and organizations that can help you step up your advocacy game.

Washington Family Engagement has a Parent Leadership Training Institute which is a free, 12-week online course that teaches parents and those who care for children to understand systems and develop community, school engagement, and public speaking skills. As a graduation requirement, parents develop a project that benefits their schools and communities. The course offers five free elective college credits for those who graduate. The Parent Leadership Training Institute Spring Course will be available in English and Spanish, and will start on February 25th.

Several organizations teach workshops and classes entitled “Telling Your Story with a Purpose.” These workshops are intended to help you refine your thoughts and personal stories to effectively communicate your needs and the needs of your community to legislators and other officials. PAVE, DadsMOVE, and various Parent to Parent groups present these regularly, and upcoming events of this nature can be viewed on the Family to Family calendar.

Getting involved with one of the many family-led organizations that focus on children and youth with special health care needs (CYSHCN), as a volunteer, committee member, or board member can take your advocacy to a whole new level. Here are four statewide CYSHCN that you can be a part of:

Dads M.O.V.E.  is a father-led organization for families who have children and youth with behavioral health issues.

PAVE supports children and youth with special needs, with an emphasis on those with intellectual and developmental disabilities.

Washington State Community Connectors centers on behavioral health challenges of children and youth, focusing on community-based solutions.

Washington State Parent to Parent (P2P) has county level offices, where parents of children youth with special health care needs can aid one another and advocate for children with special needs.

Pediatric Shared Decision-Making: Creating Better Communication for Your Child’s Care

Shared decision-making (SDM) is a set of processes where health care decisions are made through respectful collaboration between doctors, patients, and their parents or guardians. The American Academy of Pediatrics (AAP) and many other medical care groups see SDM as a key part of family-centered care. However, SDM may not be used as often as it should be. There are many reasons for this, such as:

  • Doctors have not learned how to do SDM.
  • There is not enough time.
  • There can be an imbalance of power between the medical care team and the family.
  • There is an existing lack of understanding of what SDM is and how to participate in SDM.

In this month’s Pediatrics, “Pediatric Shared Decision-Making for Simple and Complex Decisions: Findings from a Delphi Panel”, Eaton et al (10.1542/peds.2022-057978) explore the SDM process to look at what SDM is and how it is best implemented.

What did the authors find in the study?
The processes of SDM refer to the activities, in the short and long term, involved in making decisions. For example, an initial process could be to:

  • Establish a relationship with the family
  • Discuss research treatment options
  • Ask if the family understands the clinical issue and the decision that needs to be made.

The main findings of the study show the need to personalize this decision-making process to each family’s unique situation and preferences. Examples of ways to personalize the process can include:

  • Determine information preferences- such as language, amount, type, method and with whom the information is to be shared. For example, how can the information be given in a way that is accessible, useful, and meaningful to the family?
  • Discuss the role of the child and parent/guardian in the SDM process. For example, does the child want to be a part of the process? Are they old enough? Are they mature enough?
  • Explore family values and what matters most to them. For example, is a family willing to discuss these topics with the rest of the care team and/or with the child?
  • Discuss guidance from the medical team about the child’s care. For example, what type of information does the family want from the doctors and nurses providing the care?

The authors introduce a framework that suggests different ways to help with the SDM process. Developed based on learnings from the study, the framework aims to provide a range of strategies to help personalize the process to unique needs of the child, family and clinical situation. The framework provides guidance to be used in all types of decisions, as well as additional guidance for more complex decisions.

The study also highlights areas where the panel did not agree. For example, the panel did not agree on topics such as:

  • Should “personalized” or another word replace “shared” in this process?
  • How do you decide what the child’s role in the process should be?
  • Should a family be asked if they want a recommendation before a doctor gives one?

The full article is available from the American Academy of Pediatrics.

Enrollment Open for Spring 2022 Online Parent Leadership Training Institute – English and Spanish

The Parent Leadership Training Institute (PLTI) is a free, 12 week, 6 hours per week leadership course for parents, guardians, grandparents, community members and anyone working with families. The goal of the PLTI is to increase community engagement in civic matters, public education and youth development. It is held at Everett Community College in the spring and fall of every calendar year, but is currently offered only online during the COVID-19 pandemic.

The PLTI is led by credentialed facilitators who are certified by the National Parent Leadership Institute (NPLI) after completing intensive training. Facilitators are required to:

  • understand civics and the democratic process;
  • have knowledge about state and community policy issues;
  • embrace diversity;
  • understand the need for parent engagement in the community;
  • see parents/guardians/community members as community assets;
  • be inspiring!

They are accompanied by guest presenters such as business leaders, elected officials, service/health providers, school district officials and guided by a Civic Design Team formed by school and community leaders.

The Children’s Leadership Training Institute (CLTI), a free leadership course for children ages 6 – 12, is offered to the children of those enrolled in the PLTI.

PLTI Curriculum

The PLTI curriculum is an in-depth program centered on the belief that democracy is the bridge linking communities, families, diverse cultures and races. The curriculum is broken down into two sessions which paves a path to a greater understanding of our role in the community and the systems that are in place. It is a catalyst for self-reflection, awareness, analysis and transformation. We believe that everyone can be empowered to improve their lives and the lives of others.

Learn more and Sign Up Here!