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

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 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 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 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.”


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 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– [email protected]@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– [email protected]@dhfs.state.wi.u

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The Guide-By-Your-Side The Guide-By-Your-Side Program...Program...

Works for Families!Works for Families!

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

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