It Takes a Village Whos the Chief? Parent Involvement Janet DesGeorges, Parent Consultant

Parents can often do things that professionals cant from a vantage point outside the system. The Power of Parents Copyright 2005 Hands & Voices Influencing with thought leadership Freedom from Bureaucracy Sees the whole picture

Parents 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… 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

Colorados Hearing Advisory The meeting you look forward to…. Spirited Debate Respect Learning from one anothers perspectives Diversity of thought Diversity of Expertise

IS THIS THE RIGHT PLACE? This is not where the parents thought they would be… Should I quit playing my guitar? Stephanie Olson, Consumer Role Model

Welcome to the Village! The 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 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 communitys attachment to the child.

So, who do you see from birth to 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

Theres 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 familys 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. Lets get started! Play your guitar!

It Takes a Village: The Role of the Physician It Takes a Village: The Role of the Physician Albert Mehl, MD Chairman, Colorado Infant Hearing Advisory Committee Albert Mehl, MD Chairman, Colorado Infant Hearing Advisory Committee

The Primary Care Physician as Team Member The Primary Care Physician as Team 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 Family 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 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 Learner The rapid pace of evolving knowledge in the field Combining activism with education Specialty care and continuing medical education

A Collaborative Approach Early Intervention Arelene Stredler Brown, Director of the Colorado Home Intervention Program

Early 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 Childrens Hospital (all communication approaches) –Charter schools – Rocky Mountain Deaf School (bilingual) Non-categorical programs –Part C supported community programs

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 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 Intervention Stabilize programs 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 childs 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

Audiologists Role in the Village

Audiologists Participation in the 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 & Amplification 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 Quality 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 Support 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 Downs Hearing Center Frontiers in Hearing Emerging Practices in Hearing Health July Breckenridge, Colorado

The EHDI Village Vickie Thomson, State EHDI Coordinator Colorado Department of Public Health and Environment

THE EHDI VILLAGE Identify key stakeholders Develop clear, concrete guidance Collaborate with national partners

The 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

Evaluation Monitor hospital outcomes Monitor programmatic outcomes Parent input and feedback at all levels

Data Integration Critical for follow-up Critical for evaluation Critical for efficiencies and positive outcomes

It Takes a Village!