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The The “Guide-By-Your-Side”“Guide-By-Your-Side”
ProgramProgram
A Bottom-up Approach to A Bottom-up Approach to System EnhancementSystem Enhancement
““On Wisconsin!”On Wisconsin!” NORTHNORTHERN
SEasternSEastern
WESTERNWESTERN NORTHEASTNORTHEASTERN
SouthernSouthern
72 counties 72 counties
Total population:Total population: 5,420,3335,420,333
Live Births: 68,510Live Births: 68,510
SE Region: 2,020,318SE Region: 2,020,318
N + W Region: 560,788N + W Region: 560,788
The ChallengeThe Challenge
Early Intervention Early Intervention Providers had Providers had little to no little to no experience experience working with very working with very young children young children who were deaf or who were deaf or hard of hearing.hard of hearing.
History of a History of a Top-down ApproachTop-down Approach
Regional Forums in 2000 and 2001Regional Forums in 2000 and 2001– EligibilityEligibility– AssessmentAssessment– Family ImpactFamily Impact– Parent-Child InteractionsParent-Child Interactions
Annual Electronic TeleconferencesAnnual Electronic Teleconferences Annual regional Best Practice Annual regional Best Practice
Training Training Needs Assessment Conducted Needs Assessment Conducted
– revealed Birth to 3 providers wanted more information in revealed Birth to 3 providers wanted more information in almost every category assessed.almost every category assessed.
Mission: Mission: To become consultants To become consultants who will assist local Birth to 3 who will assist local Birth to 3 Programs prepare to provide “best Programs prepare to provide “best practices” services and supports to practices” services and supports to families of newborns/infants who families of newborns/infants who are deaf or hard of hearing as are deaf or hard of hearing as identified through UNHS process.identified through UNHS process.
Birth to 3 Birth to 3 Intensive TrainingIntensive Training
Birth to 3 Birth to 3 Intensive TrainingIntensive Training
5 Regional Teams 5 Regional Teams of 3 peopleof 3 people– Birth to 3 TeachersBirth to 3 Teachers– Audiologists/SLPsAudiologists/SLPs– Teachers of D/HHTeachers of D/HH– ParentsParents– Deaf AdultsDeaf Adults
Fall/Winter (2001-Fall/Winter (2001-2002)2002)– November – MarchNovember – March– 40 applicants for 16 40 applicants for 16
positionspositions– CEUs & University CEUs & University
CreditCredit
Birth to 3Birth to 3 Training Curriculum Training Curriculum
Birth to 3 SystemBirth to 3 System Child DevelopmentChild Development
– CommunicationCommunication– Social SkillsSocial Skills
Impact of Hearing Impact of Hearing Loss on FamilyLoss on Family
Parent Child Parent Child InteractionsInteractions
Intervention Intervention PracticesPractices
Information and Information and Resources Resources
Deaf Community/ Deaf Community/ CultureCulture
Deaf and Hard of Deaf and Hard of HearingHearing
TechnologyTechnology– Amplification DevicesAmplification Devices– Cochlear ImplantsCochlear Implants
Transition IssuesTransition Issues
Consultant Consultant OutcomesOutcomes
Expected OutcomesExpected Outcomes– Each regional team Each regional team
would put on a well-would put on a well-attended in-serviceattended in-service
– Would receive a call Would receive a call for on-site for on-site consultation each consultation each time a county time a county received a referral received a referral for a d/hh childfor a d/hh child
Actual OutcomesActual Outcomes– only 3/5 regions had only 3/5 regions had
enough participants enough participants for an in-servicefor an in-service
– received calls received calls regarding specific regarding specific questions or resourcesquestions or resources
– less than 5 requests less than 5 requests for on-site for on-site consultation over the consultation over the course of a yearcourse of a year
Unexpected OutcomesUnexpected Outcomes
Consultants are highly motivated to get involved Consultants are highly motivated to get involved and have done so in different waysand have done so in different ways– 2 consultants have formed EI Language/Play Groups 2 consultants have formed EI Language/Play Groups
in two different regionsin two different regions– Some consultants have obtained contracts from Some consultants have obtained contracts from
different counties to provide direct service to all d/hh different counties to provide direct service to all d/hh children ages 0-3children ages 0-3
– Many have been involved in community public Many have been involved in community public awareness campaigns in day cares, service clubs, etc.awareness campaigns in day cares, service clubs, etc.
– Many Parent Guides were referred by WSB Many Parent Guides were referred by WSB ConsultantsConsultants
Why was this Why was this outstanding resource outstanding resource
under utilized?under utilized? Top-down approach Top-down approach
requires providers to...requires providers to...– reach out for helpreach out for help– admit that they or their staff admit that they or their staff
may not be experts may not be experts – understand that deafness is understand that deafness is
differentdifferent Providers don’t know what Providers don’t know what
they don’t know, if they they don’t know, if they don’t know it.don’t know it.
Early Intervention
Birth-6 Coordinator
WSB Consultants
Parents
““It is better to be a It is better to be a guide by your side...guide by your side...
SupportiveSupportive ““I understand what I understand what
your going through.”your going through.” UnbiasedUnbiased Family knows what Family knows what
is best for their child is best for their child Shoulder to cry onShoulder to cry on Paid to listenPaid to listen
...than a sage on the ...than a sage on the stage”stage”
Busy/Scheduled Busy/Scheduled time slottime slot
May have a self May have a self interestinterest
I know what’s I know what’s best for youbest for you
May be biasedMay be biased Paid to treat Paid to treat
Wisconsin Sound Wisconsin Sound Beginnings Program, DHFSBeginnings Program, DHFS
Department of Public Department of Public InstructionInstruction
Wisconsin Educational Wisconsin Educational Services Program D/HH - Services Program D/HH - OutreachOutreach
Wisconsin Chapter of Wisconsin Chapter of Families for Hands and Families for Hands and VoicesVoices
State Birth to 3 ProgramState Birth to 3 Program
Collaboration: Collaboration: the key to successthe key to success
Impetus: WSB Parent Impetus: WSB Parent SummitSummit
January 17, 2003January 17, 2003
Parent to Parent Network SummitParent to Parent Network Summit– Invitational conference 3-5 families Invitational conference 3-5 families
of children 0-8 years per DHFS of children 0-8 years per DHFS regionregion
– Provided a forum for families with Provided a forum for families with young deaf and hard of hearing young deaf and hard of hearing children to make recommendations children to make recommendations that has provided the foundation for that has provided the foundation for a statewide parent network plana statewide parent network plan
Summit Summit RecommendationsRecommendations
Parent ConferenceParent Conference– First annual was June 27-29, 2003First annual was June 27-29, 2003– 2nd annual conference will be March 5-7, 20042nd annual conference will be March 5-7, 2004
Statewide Website/ListserveStatewide Website/Listserve– – launched on July 9, 2003launched on July 9, 2003
Direct Parent to Parent SupportDirect Parent to Parent Support– Guide-By-Your-Side ProgramGuide-By-Your-Side Program
Unbiased information in one place available Unbiased information in one place available early after diagnosisearly after diagnosis– Interactive Notebook for FamiliesInteractive Notebook for Families
http://groups.yahoo.com/group/http://groups.yahoo.com/group/DeafHHChildParentNetworkWI/DeafHHChildParentNetworkWI/
Introducing Introducing Guide-By-Your-SideGuide-By-Your-Side
CHL Form initiates simultaneous referrals
Guide-By-Your-Side Program Early 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 ProcessInterview Process
Recruitment by WSB Consultants, Recruitment by WSB Consultants, professionals and parent groupsprofessionals and parent groups
Application/Reference Forms Application/Reference Forms submittedsubmitted
33 applicants for 17 positions33 applicants for 17 positions 3- tier interview process 3- tier interview process
– philosophyphilosophy– resourcefulnessresourcefulness– parent fitparent fit
““After our child was After our child was diagnosed we went diagnosed we went home without a clue as home without a clue as to what to do next... to what to do next... except to wait for our except to wait for our next audiology visit.”next audiology visit.”
““I wish I had contact I wish I had contact from a parent from a parent experienced with d/hh experienced with d/hh issues early, right after issues early, right after our diagnosis.”our diagnosis.”
What Families What Families said...said...
Parent Guides can Parent Guides can help...help...
Parent Guides will contact Parent Guides will contact the family within 24 hours of the family within 24 hours of receiving the referral.receiving the referral.
Parent Guides will meet with Parent Guides will meet with the family within 10 days to the family within 10 days to guide and support the familyguide 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 child’s hearing loss.
Parent Guides can Parent Guides can help...help...
Parent Guides will help the families that they Parent Guides will help the families that they meet with learn about the unique needs of meet with learn about the unique needs of d/hh children d/hh children – through the sharing of personal storiesthrough the sharing of personal stories– by providing books and materials that highlight by providing books and materials that highlight
other family stories (i.e. other family stories (i.e. The Silent GardenThe Silent Garden) ) – by highlighting the impact of hearing loss on a by highlighting the impact of hearing loss on a
child’s access to communication and demonstrating child’s access to communication and demonstrating early communication techniques (i.e. promoting eye early communication techniques (i.e. promoting eye contact)contact)
Goal 2: provide an understanding of the unique needs of infants who are deaf or hard of hearing.
What Families What Families said...said...
I wish I had a better I wish I had a better understanding of terms understanding of terms and jargon used at first.and jargon used at first.
I wish that I had known I wish that I had known what resources were what resources were available for d/hh kids in available for d/hh kids in and out of my town.and out of my town.
I had no idea there were I had no idea there were “communication camps”.“communication camps”.
Parent Guides can Parent Guides can help...help...
Parent Guides Parent Guides – use the content in the use the content in the
Parent Notebook Parent Notebook – received training in the received training in the
sharing of sharing of communication options, communication options, and presentation styles and presentation styles that may indicate biasthat may indicate bias
Goal 3: provide unbiased information regarding communication options.
Parent Guides can Parent Guides can help...help...
Parent Guides have received training Parent Guides have received training – in the art of listeningin the art of listening– assessing and addressing the question assessing and addressing the question
behind the commentbehind the comment– to be ready to answer some of the first to be ready to answer some of the first
questions families might have questions families might have – and to know how to find appropriate and to know how to find appropriate
resources for familiesresources for families
Goal 4: Link families to resources available locally,regionally, and statewide
What Families said...What Families said...
““Suddenly our lives Suddenly our lives were filled with were filled with people and people and professionals we professionals we didn’t know.”didn’t know.”
““I wish I had been I wish I had been referred to B-3 referred to B-3 early on.”early on.”
Parent Guides can Parent Guides can help...help...
Established rapport Established rapport eases the introduction of eases the introduction of the family to the County the family to the County Birth to 3 Service Birth to 3 Service Coordinator during the Coordinator during the second or third home second or third home visit.visit.
Goal 5: Ensure that families are linked to their county Birth to 3 Program or local school district
What Families said...What Families said...
“ “ I wish that we had I wish that we had an an advocate/resource advocate/resource person who was not person who was not directly connected directly connected to the funding to the funding source at IFSP and source at IFSP and IEP meetings.”IEP meetings.”
Parent Guides can Parent Guides can help...help...
Parent guides are NOT Parent guides are NOT advocates. Parent advocates. Parent Guides can connect Guides can connect families with the WI families with the WI Chapter of Families for Chapter of Families for Hands and Voices for Hands and Voices for advocacy or on-going advocacy or on-going parent to parent supportparent to parent support
Goal 6: Ensure that families are connected to other parent to parent resources
Parent GuidesParent Guides parents of children of various ages parents of children of various ages
Received initial training and expected to Received initial training and expected to attend 4 additional training events annually attend 4 additional training events annually
Paid $13-15 per hour plus mileagePaid $13-15 per hour plus mileage
The Guide-By-Your-Side Program strives to The Guide-By-Your-Side Program strives to serve serve everyevery family in the state of Wisconsin. family in the state of Wisconsin.
2-4 Parent Guides in every region of the state2-4 Parent Guides in every region of the state Spanish and ASL Guides available statewideSpanish and ASL Guides available statewide
Bilingual Parent Bilingual Parent GuidesGuides
Guide-By-Your-Side Guide-By-Your-Side strives to serve all strives to serve all families.families.
Bilingual Parent Bilingual Parent Guides are available Guides are available throughout the state. throughout the state.
Hired 3 Bilingual Hired 3 Bilingual Parent GuidesParent Guides
At least 1 position At least 1 position still vacantstill vacant
Bilingual Parent Bilingual Parent GuidesGuides
Special BenefitsSpecial Benefits– unique perspectiveunique perspective– clear understanding clear understanding
of culturally based of culturally based reactionsreactions
– reduce the risk of reduce the risk of lost to follow-uplost to follow-up
– minimize the effect minimize the effect of language barriers of language barriers on participation and on participation and access to servicesaccess to services
Special Special ConsiderationsConsiderations– Recruiting and hiringRecruiting and hiring– AccommodationsAccommodations
paperworkpaperwork
– Cost Cost interpreter costs for interpreter costs for
training = $2,926 vs training = $2,926 vs cost to support room, cost to support room, meals, and travel for meals, and travel for 20 people = $2,00020 people = $2,000
Parent Guide Parent Guide Training Training
CurriculumCurriculum
What is your bias?What is your bias? Sharing your family storySharing your family story What do I say and When?What do I say and When? Wisconsin FlavorWisconsin Flavor
– Program Overview/ProtocolsProgram Overview/Protocols– WI Birth - 3 Program WI Birth - 3 Program – Parent Notebook ActivitiesParent Notebook Activities– Logistics and ConfidentialityLogistics and Confidentiality
Top Down Top Down ApproachApproach
ParentsParents
Early Intervention
Birth-6 Coordinator
WSB Consultants
Guide-By-Your-Side Guide-By-Your-Side ProgramProgram
Parents
B-3 Consultants
Early Intervention
Bottom’s-up Bottom’s-up ApproachApproach
Quotes from Parents Quotes from Parents about the Summit about the Summit -2003-2003
““My daughter is eight years old and for My daughter is eight years old and for the first time I don’t feel alone.”the first time I don’t feel alone.”
““I have learned the power that parents I have learned the power that parents can have when they come together. I can have when they come together. I feel like we have become the feel like we have become the collective backbone for our children collective backbone for our children and together we can make great and together we can make great differences in WI.”differences in WI.”
Program ContactsProgram Contacts
WESP-Outreach WESP-Outreach ProgramProgram
Birth to 6 CoordinatorBirth to 6 Coordinator– Sally-Ann AndersonSally-Ann Anderson– Phone: (608) 266-7032Phone: (608) 266-7032– Fax: (608) 267-3746Fax: (608) 267-3746– sally-ann.anderson@wesp-dhh-sally-ann.anderson@wesp-dhh-
wi.govwi.gov
WSB Program DirectorWSB Program Director– Elizabeth SeeligerElizabeth Seeliger– Phone: (608) 267-9191Phone: (608) 267-9191– Fax: (608) 267-3824Fax: (608) 267-3824– seeliel@dhfs.state.wi.useeliel@dhfs.state.wi.u
ss
The Guide-By-Your-Side The Guide-By-Your-Side Program...Program...
Works for Families!Works for Families!
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