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The Family Conference:The Family Conference:
Promoting a Promoting a “Family of Families”“Family of Families”
Patti F. MartinPatti F. Martin
EHDI 2004EHDI 2004
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The Family ConferenceThe Family Conference• General Premise of EHDI
• MORE than just screening, diagnosis and entry into EI
• Early involvement and education of parents is critical “next step”
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The Family ConferenceThe Family Conference
• JCIH states that EI should be…
• “family-centered, interdisciplinary, and culturally competent”
• “built upon informed choice for families”
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Family-Centered CareFamily-Centered Care• Families are the one constant in the
lives of children with special needs
• Child’s functioning maximized by services that enhance effectiveness of family
• Maximize parents’ abilities in order to optimize child’s
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What do we know?What do we know?
• “Most” kids with special needs are born into “normal” families (Miles et al, ’99)
• Parent must also becomes advocate and consumer (Moeller’98)
Parent-to-Parent support has major impact on coping and adaptation
(Kerr and McIntosh’00)
• Access to information is coping skill and problem-solving strategy (Hopson’86/Folkman and Lazarus’88)
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So Why a Family So Why a Family Conference?Conference?
• Promote acceptance and coping through the provision of info
• Optimize parental involvement in development of communication
• “Similar others” is a special kind of support that support experiential learning
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HistoryHistory
• …something is missing????
• Late ’80s/early ’90s
• “Family-of-families”
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TimelinesTimelines• It take 6-12 months!
• Identify stakeholders--the more the merrier!
• Determine steering committee—not too many cooks in the kitchen!
• Funding-???
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CommitteesCommittees• Budget• Logistics• Family Selection• Speakers/Topics• Childcare/Student Supervision• Materials• Hospitality/Lending
Library/Computer Lab• Technology-Assistive Devices/AV
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Budget ConsiderationsBudget Considerations• Access EHDI funding for parent
outreach, education, etc.
• Parent groups
• Agencies
• Employers
• Self-Pay
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Logistical ConsiderationsLogistical Considerations• Location
• Families in close proximity
• Central gathering place
• Single meeting Room
• Hospitality Room
• Resource Room
• Childcare Area
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Logistical ConsiderationsLogistical Considerations• Food
• Group meals vs individual
• Child mealtime vs parent mealtime
• “Corralling” area
• Breaks
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Family SelectionFamily Selection
• MOST DIFFICULT TASK!• Identified through UNHS• <18 months of age• Recommendation from professional• Sought diversity• Broad definition of families• Limited to 15 families
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Family SelectionFamily Selection• Invitations with “referral” name• 10 day turn around• Phone calls to explain• Financial Issues—work, food, etc.• Personal Letter for Coordinator
• Bio/advice• Logistics—map/what to bring/child
info
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Childcare ConsiderationsChildcare Considerations
• Primary goal--SAFETY!• Secondary goals
• Parents “comfortable” leaving kids• Exposing all kids to others with
HL/sibs• Not just “fun”—language
stim/enrichment• Graduate student education• Professional collaboration
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Childcare ConsiderationsChildcare Considerations
• Childcare available for all sessions
• Pick-up at lunchtime• Divide by age/by family
• Names on doors• Child info sheets/labels• Familiar faces
• (Ask me about diapers!)
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Childcare ConsiderationsChildcare Considerations• Supervised by SLP
• 2 University grad program students
• Designed dev. appropriate activities
• Informal play evaluations
• Supplies: baby wipes, snacks, naptime mats, blankets, hand sanitizer, glover, hearing aid supplies
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Content—Content—what topics to cover?what topics to cover?
• Selection Guides•To provide training in normal child
development—language, cognition, motor skills, pragmatics and pre-literacy
•To help parents understand hearing/ hearing loss and specifics about child
•To inform about resources, materials, equipment, options, etc.
•To form a peer network
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AgendaAgenda• Not enough time
• Not enough time
• Not enough time
• Definitely…not enough sleep
• Too much to tell
• Too much to do
• Definitely…too much to eat
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ResourcesResources• Lending Library• Computer Lab• Notebooks
• Way to organize and gather• Written “back-up”• Individualized Notebook• “My Baby and Me” (Moog)
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EvaluationEvaluation• Individual Sessions
• Overall Evaluation
• Comfort and Knowledge Survey
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It’s a Family AffairIt’s a Family Affair