The Family Conference: Promoting a Family of Families Patti F. Martin EHDI 2004

The 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 Conference JCIH states that EI should be… family-centered, interdisciplinary, and culturally competent built upon informed choice for families

Family-Centered Care Families are the one constant in the lives of children with special needs Childs functioning maximized by services that enhance effectiveness of family Maximize parents abilities in order to optimize childs

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 (Moeller98) Parent-to-Parent support has major impact on coping and adaptation (Kerr and McIntosh00) Access to information is coping skill and problem-solving strategy (Hopson86/Folkman and Lazarus88)

So Why a Family 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

History …something is missing???? Late 80s/early 90s Family-of-families

Timelines It take 6-12 months! Identify stakeholders--the more the merrier! Determine steering committeenot too many cooks in the kitchen! Funding-???

Committees Budget Logistics Family Selection Speakers/Topics Childcare/Student Supervision Materials Hospitality/Lending Library/Computer Lab Technology-Assistive Devices/AV

Budget Considerations Access EHDI funding for parent outreach, education, etc. Parent groups Agencies Employers Self-Pay

Logistical Considerations Location Families in close proximity Central gathering place Single meeting Room Hospitality Room Resource Room Childcare Area

Logistical Considerations Food Group meals vs individual Child mealtime vs parent mealtime Corralling area Breaks

Family 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 Selection Invitations with referral name 10 day turn around Phone calls to explain Financial Issueswork, food, etc. Personal Letter for Coordinator Bio/advice Logisticsmap/what to bring/child info

Childcare Considerations Primary goal--SAFETY! Secondary goals Parents comfortable leaving kids Exposing all kids to others with HL/sibs Not just funlanguage stim/enrichment Graduate student education Professional collaboration

Childcare 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 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 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

Agenda Not enough time Definitely…not enough sleep Too much to tell Too much to do Definitely…too much to eat

Resources Lending Library Computer Lab Notebooks Way to organize and gather Written back-up Individualized Notebook My Baby and Me (Moog)

Evaluation Individual Sessions Overall Evaluation Comfort and Knowledge Survey

Its a Family Affair