1. From the Classroom to the Boardroom: Increasing your Effectiveness as a Parent Advocate Hands & Voices National Janet DesGeorges Copyright © 2004, Hands & Voices

2. EHDI SYSTEMS Where are we going? How are we going to get there? What is the measure of success? - Statistics? Bureaucratic system in place? How will we know we’ve ‘gotten there’? “There is no ‘there’ there….” -Gertrude Stein Copyright © 2004, Hands & Voices

3. Success: How you know you’ve gotten there The diverse experiences from the family’s point of view are reflected in the system. Parent Participation in system’s development is effective, appropriate, and sophisticated. Support for families in the system is relevant, on-going and implemented from screening to detection/diagnosis through intervention.

4. Today’s Session Intuitive Strategies of parents – “I thought I was just being me” …So now it’s time to Change the World Guidelines for Parent Involvement

5. Debunking the Mythsabout Parent Advocacy Only squeaky wheels get greased (parents from Hell, The “angry” parent) Relegated roles i.e., “the cookie mom” Parents can only represent their own experience Parents don’t understand ‘systems’ We can’t say what we ‘need’ to say in front of parents

6. Advocacy Strategies : The Cookie Mom Parents From Hell Parent, Ph.D (Parent wHo knows Deafness) The Parent as Team Manager Parents from Law School The Political Parent Parent as Lobbyist The 007 Parent

7. The Cookie Mom Believe and trust in your own intuition Attracting bees with honey Volunteering our time and resources Validation and positive reinforcement The non-fear factor

8. Parents From Hell The part of ‘NO’ we don’t understand Turning up the heat Being pro-active vs. reactive Doing what professionals can’t always do Bringing the passion and tenacity Standing toe-to-toe with the status quo

9. Parent, Ph.D Become the expert you need to be Know your goals and what it will take to achieve them Understanding the measures of success Know your advocacy in the context of the deaf experience Articulate your position succinctly The Four R’s – Reason, Rationale, Resolution, Remedy www.nclid.unco.edu/Hvoriginals/Advocacy/Popup/popup.html

10. …cont. Ph.D. (Parent wHo knows Deafness) Sensory difference vs. Disability (i.e. Part C Generic services) Get a ‘deaf’ perspective…talk to deaf/hh people. Understand communication issues and access for deaf/hh children. What is your CQ? (Communication Quotient) “Deafness is a sensory difference. It only becomes a disability when systems fail the children and their families.” – Christie Yoshinaga Itano

11. The Parent as Team Manager Who’s on your team? MVP’S Ensuring quality control Setting the bar high: full and effective communication Addressing academic and social goals Working collaboratively Parent as lifelong case manager and expert on the child Seeing the high school graduate in the bassinette

12. Parents from Law School Knowing the IDEA for Deaf/Hard of Hearing Knowing the laws in your state Understanding EHDI systems: State Guidelines, stakeholders, how the system works www.wrightslaw.com Knowing and understanding your rights

13. Parent as Lobbyist Systemic Change: Deaf Ed. Reform, Hearing Aid Insurance coverage, Deaf Child Bill of Rights, Universal Newborn Hearing Systems Parent Perspective in Systems Building (Parents putting a face on the issue) Unites with others of influence to create change (consumers, professionals etc.)

14. The 007 Parent Having a strong arsenal Deep Throat: Developing insider sources Good Cop/Bad Cop Playing two moves ahead Combining tactics Bringing in the “Pros from Dover”

15. The Political Parent Know the vocabulary and the culture of the system you are working to change Know who’s important - understands and knows their ‘audience’ Know your resources. Develop a network Getting “Inside” the System Understands the power of compromise

16. From Individual Advocacy to Systems Advocacy Who do you represent? Your own family experience Other families you have met, read about, understand, know, have gotten input from Other families’ realities: Kids with mild, moderate, severe, profound, unilateral, conductive, auditory neuropathy, congenital, acquired, or age progressive--Kids who speak, kids who sign, kids who do both, kids who cue, kids who are aided or not aided, or who have cochlear implants

17. What kind of Role are you filling? Three Components of Parent ‘Involvement’ Parent led, centered, involved, directed – For their own child Parent-to-Parent – For each other Parent participation through advocacy– In the System Are you a professional or a parent? How will the parent’s that you serve ‘perceive’ your role? How will the system that you work in ‘perceive’ your role? Copyright © 2004, Hands & Voices

18. The challenge of the ‘parent as professional’ What you hold on to: Using the strength of being a parent is what sets you apart There is nothing else like the parent perspective What you have to let go of: You give up some of the luxury of being ‘just a parent’ You must now take into account: responsibility, confidentiality, accountability, representing the system “I struggle with those two roles all the time, but it’s part of the territory and needs to be acknowledged” -Words of Advice, IFFCC Copyright © 2004, Hands & Voices

19. What is driving your passion to participate? Anger – “I don’t want families to go through what I went through” Bias – “I have got to get the word out that ‘my’ method works for all deaf kids.” Self-Indulgence – I’m really hoping to find the help I need (The ‘it’s all about me’ syndrome)

20. What SHOULD be driving you… A passion to help other families A passion to share what you know A passion to see deaf and hard of hearing children reach their maximum potential A motivation to improve the system A desire to collaborate with other stakeholders (parents, professionals, deaf/hard of hearing adults) An understanding that this will ultimately benefit your own child

21. An effective Parent Advocate: Knows their Resources Works towards continuity within the system Consults other parent consultants-- Networking. (creates meaningful relationships) Is confident in their role and understands their function

22. Before you walk into the room… Know Yourself (your strengths and weaknesses) Know your Resources Know your Role Erase your own Agenda Know your Limits Be confident! Keep your eyes on the prize

23. The Power of Parents 1 Parent = A fruitcake 2 parents = A fruitcake and a friend 3 parents = Troublemakers 5 parents = “Let’s have a meeting” 10 parents = “We’d better listen” 25 parents = “Our dear friends” 50 parents = A powerful organization

24. Janet DesGeorges mdnc@colorado.edu 303-492-6283 Hands & Voices National PO Box 371926 Denver, CO 80237 1-866-422-0422 toll free 1-303-300-9763 parentadvocate@handsandvoices.org www.handsandvoices.org Colorado Parent Guidelines: Go to CO table