The Guide-By-Your-Side Program A Bottom-up Approach to System Enhancement

On Wisconsin! NORTH NORTHERN SEastern WESTERN NORTHEAST NORTHEASTERN Southern 72 counties Total population:5,420,333 Total population: 5,420,333 Live Births: 68,510 SE Region: 2,020,318 N + W Region: 560,788

The Challenge n Early Intervention Providers had little to no experience working with very young children who were deaf or hard of hearing.

History of a Top-down Approach n Regional Forums in 2000 and 2001 –Eligibility –Assessment –Family Impact –Parent-Child Interactions n Annual Electronic Teleconferences n Annual regional Best Practice Training n Needs Assessment Conducted –revealed Birth to 3 providers wanted more information in almost every category assessed.

n Mission: To become consultants who will assist local Birth to 3 Programs prepare to provide best practices services and supports to families of newborns/infants who are deaf or hard of hearing as identified through UNHS process. Birth to 3 Intensive Training

n 5 Regional Teams of 3 people –Birth to 3 Teachers –Audiologists/SLPs –Teachers of D/HH –Parents –Deaf Adults n Fall/Winter ( ) –November – March –40 applicants for 16 positions –CEUs & University Credit

Birth to 3 Training Curriculum n Birth to 3 System n Child Development –Communication –Social Skills n Impact of Hearing Loss on Family n Parent Child Interactions n Intervention Practices n Information and Resources n Deaf Community/ Culture n Deaf and Hard of Hearing n Technology –Amplification Devices –Cochlear Implants n Transition Issues

Consultant Outcomes n Expected Outcomes –Each regional team would put on a well- attended in-service –Would receive a call for on-site consultation each time a county received a referral for a d/hh child n Actual Outcomes –only 3/5 regions had enough participants for an in-service –received calls regarding specific questions or resources –less than 5 requests for on-site consultation over the course of a year

Unexpected Outcomes n Consultants are highly motivated to get involved and have done so in different ways –2 consultants have formed EI Language/Play Groups in two different regions –Some consultants have obtained contracts from different counties to provide direct service to all d/hh children ages 0-3 –Many have been involved in community public awareness campaigns in day cares, service clubs, etc. –Many Parent Guides were referred by WSB Consultants

Why was this outstanding resource under utilized? n Top-down approach requires providers to... –reach out for help –admit that they or their staff may not be experts –understand that deafness is different n Providers dont know what they dont know, if they dont know it. Early Intervention Birth-6 Coordinator WSB Consultants Parents

It is better to be a guide by your side... n Supportive n I understand what your going through. n Unbiased n Family knows what is best for their child n Shoulder to cry on n Paid to listen

...than a sage on the stage n Busy/Scheduled time slot n May have a self interest n I know whats best for you n May be biased n Paid to treat

n Wisconsin Sound Beginnings Program, DHFS n Department of Public Instruction n Wisconsin Educational Services Program D/HH - Outreach n Wisconsin Chapter of Families for Hands and Voices n State Birth to 3 Program Collaboration: the key to success

Impetus: WSB Parent Summit January 17, 2003 n Parent to Parent Network Summit –Invitational conference 3-5 families of children 0-8 years per DHFS region –Provided a forum for families with young deaf and hard of hearing children to make recommendations that has provided the foundation for a statewide parent network plan

Summit Recommendations n Parent Conference –First annual was June 27-29, 2003 –2nd annual conference will be March 5-7, 2004 n Statewide Website/Listserve – –launched on July 9, 2003 n Direct Parent to Parent Support –Guide-By-Your-Side Program n Unbiased information in one place available early after diagnosis –Interactive Notebook for Families

Introducing Guide-By-Your-Side CHL Form initiates simultaneous referrals Guide-By-Your-Side ProgramEarly Intervention Contacts family within 24 hrs Joint visit occurs within one month from the time of referral Contact with family happens within first month

Interview Process n Recruitment by WSB Consultants, professionals and parent groups n Application/Reference Forms submitted n 33 applicants for 17 positions n 3- tier interview process –philosophy –resourcefulness –parent fit

n After our child was diagnosed we went home without a clue as to what to do next... except to wait for our next audiology visit. n I wish I had contact from a parent experienced with d/hh issues early, right after our diagnosis. What Families said...

Parent Guides can help... Parent Guides can help... n Parent Guides will contact the family within 24 hours of receiving the referral. n Parent Guides will meet with the family within 10 days to guide and support the family Photo by Widex Goal 1: provide parents with the opportunity to establish a supportive relationship with an experienced parent of a child who is d/hh soon after they learn of their childs hearing loss.

Parent Guides can help... Parent Guides can help... n Parent Guides will help the families that they meet with learn about the unique needs of d/hh children –through the sharing of personal stories –by providing books and materials that highlight other family stories (i.e. The Silent Garden) –by highlighting the impact of hearing loss on a childs access to communication and demonstrating early communication techniques (i.e. promoting eye contact) Goal 2: provide an understanding of the unique needs of infants who are deaf or hard of hearing.

What Families said... n I wish I had a better understanding of terms and jargon used at first. n I wish that I had known what resources were available for d/hh kids in and out of my town. n I had no idea there were communication camps.

Parent Guides can help... Parent Guides can help... n Parent Guides –use the content in the Parent Notebook –received training in the sharing of communication options, and presentation styles that may indicate bias Goal 3: provide unbiased information regarding communication options.

Parent Guides can help... n Parent Guides have received training –in the art of listening –assessing and addressing the question behind the comment –to be ready to answer some of the first questions families might have –and to know how to find appropriate resources for families Goal 4: Link families to resources available locally,regionally, and statewide

What Families said... n Suddenly our lives were filled with people and professionals we didnt know. n I wish I had been referred to B-3 early on.

Parent Guides can help... n Established rapport eases the introduction of the family to the County Birth to 3 Service Coordinator during the second or third home visit. Goal 5: Ensure that families are linked to their county Birth to 3 Program or local school district

What Families said... n I wish that we had an advocate/resource person who was not directly connected to the funding source at IFSP and IEP meetings.

Parent Guides can help... n 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 Goal 6: Ensure that families are connected to other parent to parent resources

Parent Guides n parents of children of various ages n Received initial training and expected to attend 4 additional training events annually n Paid $13-15 per hour plus mileage n The Guide-By-Your-Side Program strives to serve every family in the state of Wisconsin. n 2-4 Parent Guides in every region of the state n Spanish and ASL Guides available statewide

Bilingual Parent Guides n Guide-By-Your-Side strives to serve all families. n Bilingual Parent Guides are available throughout the state. n Hired 3 Bilingual Parent Guides n At least 1 position still vacant

Bilingual Parent Guides n Special Benefits –unique perspective –clear understanding of culturally based reactions –reduce the risk of lost to follow-up –minimize the effect of language barriers on participation and access to services n Special Considerations –Recruiting and hiring –Accommodations n paperwork –Cost n interpreter costs for training = $2,926 vs cost to support room, meals, and travel for 20 people = $2,000

Parent Guide Training Curriculum n What is your bias? n Sharing your family story n What do I say and When? n Wisconsin Flavor –Program Overview/Protocols –WI Birth - 3 Program –Parent Notebook Activities –Logistics and Confidentiality

Top Down Approach Parents Early Intervention Birth-6 Coordinator WSB Consultants

Guide-By-Your-SideProgram Parents B-3 Consultants Early Intervention Bottoms-up Approach

Quotes from Parents about the Summit n My daughter is eight years old and for the first time I dont feel alone. n I have learned the power that parents can have when they come together. I feel like we have become the collective backbone for our children and together we can make great differences in WI.

Program Contacts n WESP-Outreach Program Birth to 6 Coordinator –Sally-Ann Anderson –Phone: (608) –Fax: (608) n WSB Program Director –Elizabeth Seeliger –Phone: (608) –Fax: (608)

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