It Takes a It Takes a Village Village Who’s the Chief? Who’s the Chief? Parent Involvement Parent Involvement Janet DesGeorges, Parent Janet DesGeorges, Parent Consultant Consultant
Mar 27, 2015
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!