it takes a village whos the chief? parent involvement janet desgeorges, parent consultant

It Takes a It Takes a VillageVillage

Who’s the Chief?Who’s the Chief?Parent InvolvementParent Involvement

Janet DesGeorges, Parent ConsultantJanet DesGeorges, Parent Consultant

Parents can often

do things that professionals

can’t from a vantage point

outside the system.

The Power of Parents The Power of Parents

Copyright 2005 Hands & Voices

•Influencing with thought leadership•Freedom from Bureaucracy•Sees the whole picture

Parents Impacting SystemsParents Impacting Systems

Assuring parent input…• Built/budgeted into the system• Includes both individuals & organizations

– parent members and parent guests– revolutionary idea: Have more than 1

• Support for training & development

Copyright 2005 Hands & Voices

In order to run the village…In order to run the village…• A Good Parent Rep.

– Understands the system– Is treated as an equal– Looks beyond their own personal

experiences to represent other family stories/experiences

– See recommended Guidelines for Parent Leadership in Early Hearing Detection and Intervention (EHDI) Systems at www.cdphe.state.co.us/ps/hcp/hcphom.asp

Colorado’s Hearing AdvisoryColorado’s Hearing Advisory• The meeting you look forward to….

• Spirited Debate

• Respect

• Learning from one another’s perspectives

• Diversity of thought

• Diversity of Expertise

IS THIS THE RIGHT IS THIS THE RIGHT PLACE?PLACE?

This is not where the parents thought they This is not where the parents thought they would be…would be…

““Should I quit playing my guitar?”Should I quit playing my guitar?”Stephanie Olson, Consumer Role ModelStephanie Olson, Consumer Role Model

Welcome to the Village!Welcome to the Village!The Colorado Infant Hearing ProgramThe Colorado Infant Hearing Program

• Reassure the parents that they are not alone by building relationships with the parents and child.

• Connect them to the resources of the village• Assist the parents as they become advocates for

their child.• Provide unbiased information regarding

communication and program options.

As the child reaches out to the As the child reaches out to the world, the village reaches back.world, the village reaches back.

• Babies communicate with everything they have available.

• Parents appreciate support while working with the systems available to them.

• Have hope, it builds the entire community’s attachment to the child.

So, who do you see from birth to So, who do you see from birth to three? three?

• CHIP Colorado Home Intervention Program (family facilitators)• Deaf/hard of hearing role models• Sign Language Instructors• Signed reading program• Oral communication consultant• Hands and Voices• Consumer Advisor• Family Assessments/research at CU• Consultants in related disciplines

The village must be both exemplary in expertise and interpersonal skills

There’s No Place Like HomeThere’s No Place Like Home

• The parent is truly the best facilitator for the child.• Home based program.• Family centered.• Individualized program that fits the needs of the child

and family.• Honor the family’s communication choice for their child.• Strength based! Follow the child and families energy

and ability.• The great news is, your child has the ability to

communicate. Let’s get started!• Play your guitar!

      It Takes a Village:  The Role of the It Takes a Village:  The Role of the

PhysicianPhysician

    Albert Mehl,  MD Albert Mehl,  MD Chairman, Colorado Infant Hearing Advisory Chairman, Colorado Infant Hearing Advisory

Committee Committee

  The Primary Care Physician as Team The Primary Care Physician as Team Member Member

• Assuring follow-up for infants who fail screening

• Assuring compliance with amplification, early intervention

• Coordinating specialty care evaluations The concept of the medical home

The Primary Care Physician as Patient and The Primary Care Physician as Patient and

Family AdvocateFamily Advocate

• Advocacy for families dealing with insurance / payor issues

• Legislative advocacy:  The power of two letters

• Advancing diagnosis / intervention to mirror metabolic screening

The Physician as Systems ConsultantThe Physician as Systems Consultant

• Physician representation on state infant hearing advisory board

• Ongoing communications with physicians who care for newborns

• Outreach to family physicians by pediatricians and specialists

• Assisting in the design of "just-in-time" learning modules

The Physician as LearnerThe Physician as Learner

• The rapid pace of evolving knowledge in the field

• Combining activism with education

• Specialty care and continuing medical education

A Collaborative ApproachA Collaborative Approach

Early InterventionEarly Intervention

Arelene Stredler Brown, Director of the Arelene Stredler Brown, Director of the Colorado Home Intervention ProgramColorado Home Intervention Program

Early Intervention Program OptionsEarly Intervention Program Options

• Specifically for D/HH– Public program – Colorado School for the Deaf & the

Blind (all communication approaches)– Private programs – The Listen Foundation (AVT)– Clinic programs – The Children’s Hospital (all

communication approaches)– Charter schools – Rocky Mountain Deaf School

(bilingual)

• Non-categorical programs– Part C supported community programs

Agencies & Services Collaborate..Agencies & Services Collaborate..

• Part C– Referral from point-of-entry to local Part C– Shared service coordination– Generously funds direct services– Exploring integrated data management of EHDI stats

and Part C data

• Clinical audiologists– Quick referral from (suspicion of) diagnosis to early

intervention– Early interventionist attends hearing evaluations, CI

evaluations

State Agencies CollaborateState Agencies Collaborate

• Families for Hands & Voices– Parents deliver information, support, leadership– Contracted by early intervention program

• Deaf/Hard of Hearing Connections– Role models attend group events, make home visits – Operated through state agency and available to all

families• Programs collaborate on specific initiatives

– Oral Communication Consultant (CSDB & Listen Foundation)

– Talk Around the Clock (CHIP & TCH)– Toddler Group (CHIP & RMDS)

Strategic Planning for Early Strategic Planning for Early InterventionIntervention

• Stabilize program’s position within the State School for the Deaf

• Increase time for the 10 Regional Hearing Resource Coordinators (CO-Hear Coordinators)– Peer mentoring for early interventionists– Support to families during transition to preschool– Assure statewide assessment practices are implemented during

preschool years– Peer mentoring to preschool teachers– Potential to provide family-centered practices during child’s

preschool years• Hire early interventionists as FTE• Secure dependable funds for direct services

– Funding is a “patchwork quilt” - county-specific, mujltiple funding sources, cost to management to identify funding

Audiologist’s Role Audiologist’s Role in the Villagein the Village

Audiologist’s Participation in Audiologist’s Participation in the Colorado State Systemthe Colorado State System• Representation on the DPH Infant

Hearing Advisory• Task Force on Assessment &

Amplification• Pediatric Hearing Aid Coalition • Continuing Educational Opportunities • Materials development • Obligation to report results of

assessment to DPH & PCP• Obligation to refer to CO-Hear

Coordinator

Task Force on Assessment & Task Force on Assessment & Amplification ResponsibilitiesAmplification Responsibilities

• Write & revise assessment & amplification guidelines

• Provide input to other parts of guidelines• Identify CE needs of audiologists• Assist in planning & implementation of CE

opportunities• Provide input to Parent Resource Guide• Disseminate information to audiology

community through CAA

System for Assuring System for Assuring Quality OutcomesQuality Outcomes

• Tracking from screening to assessment– Hospitals– Health Department

• Published audiologic assessment & Amplification guidelines

• Referral network to educated audiologists• Complete and accurate information for families• Importance of data management to audiologist,

center, birthing hospital, DPH

Marion Downs Hearing Center Marion Downs Hearing Center Support for the “Global VillageSupport for the “Global Village””

• Providing expertise & resources to national organizations and state systems

• CDC Cooperative Center

• Hearing International Cooperative Center

• Continuing Educational Opportunities

• Web Site resource

Marion Marion Downs Downs Hearing Hearing CenterCenter Frontiers in HearingFrontiers in Hearing

Emerging Practices in Emerging Practices in Hearing Health Hearing Health

July 28-30July 28-30Breckenridge, Colorado Breckenridge, Colorado

www.mariondownshearingcenter.org www.mariondownshearingcenter.org

The EHDI VillageThe EHDI Village

Vickie Thomson, State EHDI Vickie Thomson, State EHDI CoordinatorCoordinator

Colorado Department of Public Health Colorado Department of Public Health and Environmentand Environment

THE EHDI VILLAGETHE EHDI VILLAGE

• Identify key stakeholders

• Develop clear, concrete guidance

• Collaborate with national partners

The EHDI VillageThe EHDI Village

• Develop a statewide strategic plan

• Identify goals and objectives to meet the National goals and objectives for EHDI

• Implement the plan

• Evaluate the plan

EvaluationEvaluation

• Monitor hospital outcomes

• Monitor programmatic outcomes

• Parent input and feedback at all levels

Data IntegrationData Integration

• Critical for follow-up

• Critical for evaluation

• Critical for efficiencies and positive outcomes

It Takes a Village!It Takes a Village!