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From the Classroom to the Boardroom: Increasing your
Effectiveness as a Parent Advocate
Hands & Voices NationalJanet DesGeorges Copyright © 2004, Hands & Voices
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
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.
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
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 experienceParents don’t understand ‘systems’We can’t say what we ‘need’ to say in front of parents
Advocacy Strategies :The Cookie MomParents From HellParent, Ph.D (Parent wHo knows Deafness) The Parent as Team Manager Parents from Law SchoolThe Political ParentParent as LobbyistThe 007 Parent
The Cookie MomBelieve and trust in your own intuitionAttracting bees with honeyVolunteering our time and resourcesValidation and positive reinforcementThe non-fear factor
Parents From HellThe part of ‘NO’ we don’t understandTurning up the heatBeing pro-active vs. reactiveDoing what professionals can’t always doBringing the passion and tenacityStanding toe-to-toe with the status quo
Parent, Ph.DBecome the expert you need to beKnow your goals and what it will take to achieve themUnderstanding the measures of successKnow your advocacy in the context of the deaf experienceArticulate your position succinctlyThe Four R’s – Reason, Rationale, Resolution, Remedywww.nclid.unco.edu/Hvoriginals/Advocacy/Popup/popup.html
…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
The Parent as Team Manager
Who’s on your team? MVP’SEnsuring quality controlSetting the bar high: full and effective communicationAddressing academic and social goalsWorking collaborativelyParent as lifelong case manager and expert on the childSeeing the high school graduate in the bassinette
Parents from Law SchoolKnowing the IDEA for Deaf/Hard of HearingKnowing the laws in your stateUnderstanding EHDI systems: State Guidelines, stakeholders, how the system workswww.wrightslaw.comKnowing and understanding your rights
Parent as LobbyistSystemic Change: Deaf Ed. Reform, Hearing Aid Insurance coverage, Deaf Child Bill of Rights, Universal Newborn Hearing SystemsParent Perspective in Systems Building (Parents putting a face on the issue)Unites with others of influence to create change (consumers, professionals etc.)
The 007 ParentHaving a strong arsenalDeep Throat: Developing insider sources Good Cop/Bad CopPlaying two moves aheadCombining tacticsBringing in the “Pros from Dover”
The Political ParentKnow the vocabulary and the culture of the system you are working to changeKnow who’s important - understands and knows their ‘audience’Know your resources. Develop a networkGetting “Inside” the SystemUnderstands the power of compromise
From Individual Advocacy to Systems Advocacy
Who do you represent?Your own family experienceOther families you have met, read about, understand, know, have gotten input fromOther 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
What kind of Role are you filling?
Three Components of Parent ‘Involvement’Parent led, centered, involved, directed – For their own childParent-to-Parent – For each otherParent 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
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
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)
What SHOULD be driving you…
A passion to help other familiesA passion to share what you knowA passion to see deaf and hard of hearing children reach their maximum potentialA motivation to improve the systemA desire to collaborate with other stakeholders (parents, professionals, deaf/hard of hearing adults)An understanding that this will ultimately benefit your own child
An effective Parent Advocate:
Knows their ResourcesWorks towards continuity within the systemConsults other parent consultants--Networking. (creates meaningful relationships)Is confident in their role and understands their function
Before you walk into the room…
Know Yourself (your strengths and weaknesses)Know your ResourcesKnow your RoleErase your own AgendaKnow your LimitsBe confident!Keep your eyes on the prize
The Power of Parents
1 Parent = A fruitcake2 parents = A fruitcake and a friend3 parents = Troublemakers5 parents = “Let’s have a meeting”10 parents = “We’d better listen”25 parents = “Our dear friends”50 parents = A powerful organization
Janet DesGeorges [email protected]
Hands & Voices NationalPO Box 371926Denver, CO 802371-866-422-0422 toll free1-303-300-9763parentadvocate@handsandvoices.orgwww.handsandvoices.orgColorado Parent Guidelines: Go to CO table
