JANET DESGEORGES DECEMBER 7, 2012 ORLANDO, FL BREAKOUT SESSION II Helpful Tools for Parent Partners

Goals of this Session Tools of the trade  The Art of Story What’s leadership got to do with it?  Go ahead, be the driver of a PDSA Practical tips  Do what you say What happens here, leaves Here  Stay in touch with one another  What’s next for you?

Your Story is Your Power “If a story is not about the hearer he [or she] will not listen. A great lasting story is about everyone or it will not last.” ―John Steinbeck, East of Eden Who is your audience?

I definitely felt my parents paid more attention to my sister. It was really hard in my family, and really hard between Sara and I. I never understood why until later on…I didn’t have the self awareness to understand. There was so much attention paid to how Sara was adjusting and doing in school. It was never acknowledged that this is hard for hearing siblings, we were just supposed to be inspired by our hard of hearing sister. Looking back, it wasn’t my parents’ fault, they were trying to help Sara, but it was the cause of a lot of problems between Sara and I. It did affect us. A lot of good could’ve come from just acknowledging how difficult this was for us as hearing siblings because sometimes I really felt resentment. -- Leah, age 21, sister of Sara

The Art of Story Time yourself Be in context Parse it out Use emotion when needed, use facts when needed Know others’ stories too When NOT to tell your story Don’t preach to professionals

Using Your Story for PDSA Work Is your story common to others? Does your story lend itself to ‘improvement’? Does your story contain a solution that could help others? (change idea)

Are you ready to LEAD?

The things we tell ourselves about “leadership” No Way! Never in a Million years Well, what do you know? I am leading I was Born to Lead! Bring it on From Christine Griffin, WA Hands & Voices

Not just involved, but leading the way… copyright (c) Hands & Voices 2011 A person who guides others in action or opinion; a person of eminent position and influence is a leader Oxford English Dictionary 5th Edition “Bringing people to a place where they wouldn’t go on their own” From Hands & Voices: A parent leader is capable of effectively representing a consigned agenda to impact/improve systems that serve children and families.

Parents as Leaders “Parents have been under-represented at the level where decisions are being made about programs and services for their children. But parents remain the consistent, long-term “case manager” for their child; overseeing the programming and ‘watch- dogging’ its quality.” Wright, 2001

Learning to Lead… Find a mentor Get some training Get connected Consider your strengths/weaknesses Say ‘yes’ to opportunities Do what you say you’ll do Recruit, delegate, and inspire! Recognize your power as a parent copyright (c) Hands & Voices 2007

What’s Driving You? Anger – “I don’t want families to go through what I went through!” Purpose – “I have learned a lot and am willing to share that.” Bias – “I have got to get the word out that ‘my’ method works for all deaf/hard of hearing kids.” Self-Indulgence – “I’m really hoping to find the help I need.” (The “it’s all about me” syndrome.) Altruism – “Someone helped me, and I want to give something back.” © 2009 Hands & Voices

Using your power for good What’s driving your passion? Anger? Bias? Self-indulgence? But what’s going to have more impact? satisfaction of helping other families sharing what you know authentic collaboration with professionals results that change and improve systems Hands & Voices Copyright 2008

“…I know you don’t have time to change your world. But you can take one small step today, add one little tiny thing to your own to do list. It’s not going to be glamorous or glorious, you may never make the newspaper or win an award...but if you don’t step up to make the world a better place, who will? What needs to change? You know what it is….it’s the thing that makes your heart pound when you think about it. Or perhaps you have found yourself on a path due to life circumstances and you realize that others are looking to your experiences and reflections on this experience and are looking to you for leadership. Will you take up the call? Are you ready to lead?” -The Accidental Leader, Page 8 What’s Your Story?

Parents: Tips for Active Participation on your State’s/ Team Learn the ‘Art’ of Story Be on time Be prepared Be committed Respect the experience of professionals Don’t be afraid to speak up Ask for clarification Learn the system (eg, EHDI, QI, “change package,” medical home) Get input from other parents

Before You Walk Through the ‘Parent Partner’ Door… Know your resources Know yourself (strengths, weaknesses, etc.) Know your role Erase your own agenda Know your limits © 2008 Hands & Voices

“I knew I was making a difference on the team when…” “PDSAs I’ve been involved with…” “The members of my team could help my participation by…”

Next Steps… Parent Partners: What are some things you’ve learned that you will take with you onto your next project?

Thank you! Janet DesGeorges, Executive Director PO Box 3093, Boulder, CO toll free