New Jersey Family Learning Day - A Collaborative Approach to Family Support

1. New Jersey Family Learning Day -A Collaborative Approach to Family Support Malia Corde, Coordinator, New Jersey Statewide Parent to Parent, A Program of the Statewide Parent Advocacy Network Nancy G. Schneider, M.A., CCC-A, FAAA, Audiologist, New Jersey EHDI Program, New Jersey Department of Health & Senior Services Leslie M. Beres-Sochka, M.S., Program Manager, Early Identification and Monitoring, New Jersey Department of Health & Senior Services

2. Faculty Disclosure Information In the past 12 months, I have not had a significant financial interest or other relationship with the manufacturer(s) of the product(s) or provider(s) of the service(s) that will be discussed in my presentation. This presentation will not include discussion of pharmaceuticals or devices that have not been approved by the FDA

3. JCIH 2000 “Provisions for supportive family education, counseling and guidance should be available.”

4. Family Learning Day: Defined • Opportunity for parents/guardians to gather & share unbiased information re: raising & advocating for their children with hearing loss • Collaborative multidisciplinary agency event • Target audience: exclusively limited to parents and/or guardians of children with hearing loss and their siblings • Biennial “family-based” event • Age appropriate activities for all children throughout the day

5. Considerations for a Successful Family Learning Day Experience • Multidisciplinary team collaboration • Selecting a theme • Location, location, location! • Outreach to parents/professionals • Defining the intended audience • Presenters/Exhibitors/Sponsors • Children’s activities • Communication access • Funding & Budget considerations • Refreshments • Conference evaluation

6. A Multidisciplinary Approach • Original concept: • New Jersey Division of the Deaf and Hard of Hearing/New Jersey Department of Human Services • Marie Katzenbach School for the Deaf • New Jersey EHDI Program/New Jersey Department of Health and Senior Services • Agencies added to the Planning Committee • Statewide Parent Advocacy Network – New Jersey Parent to Parent • The College of New Jersey- Special Education, Language and Literacy Department • Special Child Health Services Case Management/New Jersey Department of Health and Senior Services • Participation from a variety of agencies • Allows for input from a variety of resources/expertise • planning & conference participation • Pro bono utilization of agency staff at the conference • Reduced the cost of hosting this event

7. Selecting a Theme 2005 Family Learning Day Theme: “Empowering Parents of Children Who Are Deaf and Hard of Hearing” • Presentations in the following areas: • Advocating for Your Children’s Rights • Transitioning (from EI to Adulthood) • Technological Advancements (HA’s, ALD’s CI’s) • Language Development • Parent Panel (4 parents) • Representing parents of children with varying degrees of hearing loss & communication modalities

8. Geographic/Host Site Considerations • New Jersey • 4th smallest state in US • 70 miles wide/150miles long • Most densely populated state (1,134 persons/square mile) • FLD to be held in 3 different regions of the state on a rotating basis to allow for maximum access for all families • First Family Learning Day held at MKSD, Trenton on 10-29-05 a

9. Geographic/Host Site Considerations (continued…) • Preferably at a school with a designated program for children with hearing loss • Any facility selected should include: • Large conference room • Exhibit area • Breakout session rooms • Breakfast/lunch area • Children’s activity areas • Registration area • ADA accessible • Access to audio/visual technology • Communication access • Easy access to parking

10. Outreach to Parents/Professionals • 1 ½ months <FLD: Registration Brochure mailing • Documents mailed in bulk and/or electronically to the following: • Schools (e.g., educational programs specifically for children with hearing loss and inclusive programs) • Early Intervention Programs • Audiologists and Hearing Aid Dispensers • Special Child Health Services Case Management Units • Family Support Organizations

11. Intended Audience • Parents • Invitation extended to NJ-based parents of children of all ages with any degree of hearing loss • Agenda set up to allow parents to participate in all presentations and exhibit areas without concern for supervision of their children • Multiple opportunities for parent networking • Children • Both children with hearing loss & their siblings invited to attend • Supervised “age appropriate” activities available throughout the day

12. Presenters/Exhibitors/Sponsors • Unbiased & relevant to audience regardless of degree of child’s hearing loss or communication preferences • Presentations: • Professionals representing a variety of agencies & disciplines • Educators, Attorneys, Audiologists, EI Specialists, Speech-Language Pathologists, Civil Rights Investigators, ALD/Alerting Systems Consultants, Parent Support Counselors • Parents • Representing children of various ages, with hearing loss of varying degrees; communication preferences • Exhibitors • Local, State and national agencies providing services to individuals with hearing loss & their families • Well balanced with equal representation • Sponsors • Host school, planning committee agencies, organizations serving individuals with hearing loss

13. Children’s Activities • Activities conducted under the supervision of a Certified Teacher of the Deaf • Utilization of volunteers from: • Local colleges • Host school faculty and high school students • Conference Planning Committee • Local Deaf Clubs/Organizations • Age appropriate activities designed for the following groups • 6 months – 3 years • 4 to 6 years • 7 to 9 years • 10 to 12 years • 13 and up years

14. Communication Access • Utilization of a Communication Access Coordinator to oversee communication access services for: presenters, exhibit areas & for any parent requesting communication services • Registration Form included list of communication access services for: • Sign Language/English interpreters • Tactile Interpreting • CART reporting • Spanish translation services

15. Refreshments • 2005 Family Learning Day • Host school provided breakfast & snacks for all attendees as well as lunch for adult participants, speakers and exhibitors • Prepared in school cafeteria by host site staff • Local fast-food establishments donated “child-friendly” lunches for all the children in attendance • 2005 event included: • Continental breakfast • Boxed lunch • Afternoon snacks/beverages • Registration Form included options for special dietary restriction requests

16. Budget/Funding Considerations • Budget to include: • Host school site or comparable facility • Refreshments • Printing • Mailing costs (e.g., postage) • Speakers fees (transportation, accommodations) • Communication access (for planning meetings & actual event) • Conference bags/books • Ancillary staff (e.g., nurse, technical support) • Audio/visual equipment • Children’s activities • Speaker’s gifts • Funding: • $$ or pro-bono services drawn from: • Planning Committee Agencies • Sponsors

17. Conference Evaluation Form • 1 page evaluation form • Parents completed forms at conclusion of event requesting feedback on: • Presenters/Exhibitors • Suggestions for conference improvement • Quality of child care services • Conference “likes/dislikes” • How had they been notified of conference • Recommendations for future topics

18. Parent Feedback Family Learning Day – 2005 • “Empowering for my daughter and I!” • “I have gained new information today that will help me to better help my son.” • “The “Parent Panel” was interesting and inspiring” • “As a parent of 3 children in good health, today I can see a future with more hope…” • “Very, very informative – I now know more than any doctor ever told me.” • “Great support for the parents…” • “The best thing is that you gathered together parents of children with hearing loss.” • “I thoroughly enjoyed the conference and look forward to next year”

19. What have we learned? • Focus shift from an “agency-driven event for families” to a “family-driven” event with collaboration & support from statewide agencies • Change from an “annual” to a “biennial” event • Expanding intended audience from “parents” to “families” • Offering a sibling support session • Use of “Save the Date” notices (English/Spanish) 3 mo <event • Ensuring diversity of the FLD Planning Committee • Sensitivity to possible conflicts with date of event • Maintaining planning committee minutes & quarterly treasury reports • Inclusion of topics of interest to families of children with all degrees of hearing loss and communication modalities • Availability of Spanish translated materials and interpreters

20. JCIH 2000 “The success of EHDI programs depends on professionals working in partnership with families as a well-coordinated team.”