The “Guide-By-Your-Side” Program -One Year in Review- March 3-5, 2005 National EHDI Conference

Wisconsin 23rd Largest State 72 counties Live Births: 68,510 Total Population:5,427,299 Live Births: 68,510 SE Region: 2,020,318 N + W Region: 560,788 NORTHERN WESTERN NORTHEASTERN Southern SEastern

The Need Many Early Intervention Providers have little or no experience working with very young children who are deaf or hard of hearing and their families. Parents want immediate contact with another parent.

Bottom’s-up Approach B-3 Consultants Early Intervention Parents Empowered parents Both Guides and New families Guides model and mentor B-3 service coordinators Families are more prepared to ask for what their child needs When a B-3 program has a clear understanding of what the child and family needs then they can better analyze whether or not their program is prepared to provide it. In other words they will begin to understand what they don’t know and will be inspired to ask for help. When they realize that they could use some help they can call on the B-6 consultants or contract for direct services from the WSB B-3 consultants. The entirety of the experience will change the system in a positive direction for the next family who comes through. Guide-By-Your-Side Program

Introducing Guide-By-Your-Side CHL Form initiates simultaneous referrals Guide-By-Your-Side Program Early Intervention Contacts family within 24 -48 hrs Contact with family happens within first month Talk through paper vs electronic referral process Joint visit occurs whenever possible

Program Fundamentals Core Fundamentals Unbiased Support and Information Cultural Sensitivity Direct Communication Flexibility Links to Resources

Parent Guides can help... Goal 1: Provide parents with the opportunity to establish a supportive relationship with an experienced parent of a child who is deaf /hard of hearing soon after they learn of their child’s hearing loss.

Parent Guides can help... Goal 2: Provide an understanding of the unique needs of infants who are deaf or hard of hearing. Goal 3: Provide unbiased information regarding communication options. Goal 4: Link families to resources available locally,regionally, and statewide.

Parent Guides can help... Goal 5: Ensure that families are linked to their county Birth to 3 Program or local school district. Goal 6: Ensure that families are connected to other parent to parent resources. - Parent guides are NOT advocates. Parent Guides can connect families with the WI Chapter of Families for Hands and Voices for advocacy or on-going parent to parent support.

Program Statistics 2004 30 referrals 16 active cases 10 closed cases 4 “lost” cases

Program Successes Guide Perspective: -trainings and case conferences -new families know GBYS -high level of comfort -ability to provide emotional support -ability to link families to resources -ability to impact the system

Program Successes Family Perspective: -Guide is a parent, not another professional -flexibility, i.e. meeting in family’s home in the evening or over the weekend -high level of comfort -information and insights always very helpful -Guides return with more information -Guides provide a “light at the end of the tunnel”

Program Challenges Guide Perspective: -timeline -WE-TRAC delays -lack of statewide resource knowledge -phone cards / payment for phone calls -payment for travel -limited to six hours

We would like on-going visits with our Guides! Program Challenges Family Perspective: We would like on-going visits with our Guides!

Future Directions Continued recruitment and retainment On-going training for Parent Guides Develop GBYS policies and procedures manual Continue to challenge systems and boundaries Provide technical assistance to other states

What families say… “As soon as she walked through the door and we saw her understanding smile we felt immediately at ease.” “Our Guide is like a light at the end of the tunnel…a promise that everything will be alright.”

Program Contacts WSB Program Director WESP-Outreach Program Elizabeth Seeliger Phone: (608) 267-9191 Fax: (608) 267-3824 seeliel@dhfs.state.wi.us WESP-Outreach Program Birth-6 Services Coordinator / GBYS Program Coordinator Sally-Ann Anderson Phone: (608) 266-7032 Fax: (608) 267-3746 sally-ann.anderson@wesp-dhh.wi.gov

The Guide-By-Your-Side Program... Works for Families!