The Family Conference:The Family Conference:

Promoting a Promoting a “Family of Families”“Family of Families”

Patti F. MartinPatti F. Martin

EHDI 2004EHDI 2004

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”

The Family ConferenceThe Family Conference

• JCIH states that EI should be…

• “family-centered, interdisciplinary, and culturally competent”

• “built upon informed choice for families”

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

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)

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

HistoryHistory

• …something is missing????

• Late ’80s/early ’90s

• “Family-of-families”

TimelinesTimelines• It take 6-12 months!

• Identify stakeholders--the more the merrier!

• Determine steering committee—not too many cooks in the kitchen!

• Funding-???

CommitteesCommittees• Budget• Logistics• Family Selection• Speakers/Topics• Childcare/Student Supervision• Materials• Hospitality/Lending

Library/Computer Lab• Technology-Assistive Devices/AV

Budget ConsiderationsBudget Considerations• Access EHDI funding for parent

outreach, education, etc.

• Parent groups

• Agencies

• Employers

• Self-Pay

Logistical ConsiderationsLogistical Considerations• Location

• Families in close proximity

• Central gathering place

• Single meeting Room

• Hospitality Room

• Resource Room

• Childcare Area

Logistical ConsiderationsLogistical Considerations• Food

• Group meals vs individual

• Child mealtime vs parent mealtime

• “Corralling” area

• Breaks

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

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

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

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!)

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

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

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

ResourcesResources• Lending Library• Computer Lab• Notebooks

• Way to organize and gather• Written “back-up”• Individualized Notebook• “My Baby and Me” (Moog)

EvaluationEvaluation• Individual Sessions

• Overall Evaluation

• Comfort and Knowledge Survey

It’s a Family AffairIt’s a Family Affair