Developing and Providing Unbiased Information

CENTe-RRosalyn Proctor, Ph.D and Anne McNally, M.A.

2nd Annual National Early Hearing and Detection & Intervention Meeting

Atlanta, GA Feb 2003

Session Goals

Recognize family perspectives

Discuss material development

Review delivering info

Identify success strategies

Collaborate and share

Where to start•From a parent:

“I truly feel that beyond the sense of passion to help, an early intervention professional must be able to provide support to the family...

The biggest pain in my heart was the feeling of helplessness and lack of direction in the first days/weeks of discovering Baby Jack’s hearing loss.”

CENTe-R Mission• Support graduate level professionals through:

– Web-based training– Transdisciplinary materials– Connections among ongoing learners

We honor:

–Knowledge of deaf’/hh individuals

–Potential of children

–Strength of families

CENTe-R is collaborating with talented individuals across the nation. rev 12/02

Partners= Module Experts = Standards Experts=

Perspectives Sought• Families• Practitioners• Early Intervention Services• Community Associations• School Programs• Institutions of Higher Ed• Parent Groups• State Agencies• National Organizations• Members of Deaf Community

Experts Outline Modules

Modules Developed

Partners React to Modules

Modules Revised

Reviewers Critique Modules

Modules Finalized

Modules Available on Web

IHE Pilot Modules Nationwide

Early Early InterventionIntervention

DeafnessDeafnessStandards Identified & Validated

Standards Promote Unbiased Perspectives

• Strengthening Professionals

– Expanding knowledge base

• Improving Services

– Encouraging collaborative approaches

• Celebrating Children and Families

– Recognizing family expertise

Parent Perspectives:

“When parents first find out their child has special needs, they may have many questions such as ‘how did this happen and will my child have a normal life?’

Having all options available for parents to choose from is essential and having an extensive knowledge about all the options is important.”

Wish for choices

• Unbiased information– about communication options

• Information for families– to make well informed decisions

• Respect family choices• Let parent make the final decision

• Hands and Voices, retrieved 2003, www.handsandvoices.org

Power of Delivery

Parents strongly influenced by

information received immediately after diagnosis

– Balanced information with detail on all available options – OR– Limited information with the expectation families would

follow it without considering other options

» Eleweke and Rodda, 2000

Principles/Practices

• Creating and using family materials:

– Use family friendly language– Present information in context of early intervention– Use a variety of media in multiple languages– Enhance appeal of materials and readability– Involve diverse cadre of

• Informed service providers• Experienced parents• Community representatives

NEC*TAS 1996

Professional BiasAssumptions/approach influenced by:

• Personal comfort

• Professional exposure

• Decision making style

• Historical experience of approach

• Prediction of child/family potential

• Ability to collaborate

Parent feedback

From a family:

“Sometimes one way is presented more as an answer,

but having all options available whether they’re versed in cochlear implants or sign or oral.”

Connecting families to infoComponents of quality material:

• Defines communication choice clearly• Gives examples of use• Outlines learning process• Summarizes pros and cons• Uses positive descriptors• Explains where to get more material• Carefully developed and well presented

Linking families to peopleComponents of quality material:

•Recommends family’s exploring options

•Supports parent to parent networking

•Identifies local sites using targeted approach

•Offers national contacts

•Recognizes Deaf community

•Developed/approved by diverse group

Factors in Decision Making

• Parent Preference

• Child’s Development

• Family Support

• Community Services

• Interventionists’ Expertise

Factors in Decision Making

• Family– Experience with medical field– Comfort level with professionals– Success in educational settings– Cultural view of time, disabilities– Familiarity with individuals who are deaf/hh

Family factors cont’d

– Age and conditions at identification– Availability of time, money, support– Locale and transportation access– Communication style within family– Coping process preferred

Financial Considerations• Time Involved

• Training Needed

• Travel Required

• Testing Suggested

• Technology Costs

• Terms of Insurance

• Transitions Expected

Factors in Decision Making

• Child– Hearing ability– Overall Health– Rate of Development– State of Attachments– Communication Style– Family Situation

Factors in Decision Making

Community Support

• Extended family involvement

• Access to role models

• Availability of information/equipment

• Opportunity to be just child/family

• Parent to parent network

Factors in Decision Making

Interventionist Expertise

• Team effectiveness

• Clarity of roles

• Mentor/teacher/instructor

• Ongoing assessment

• Length of connection

Cultural Perspectives

• Latino families may prefer natural healers over traditional medical doctors– Bruder, Anderson, Schultz, and Caldera 1991

• Asian families may see a disability as honor, blessing or fate, not to be interfered with or changed in any way.

• Anderson, 1989

Deaf Culture• Rich language (ASL) and long history

• Deaf is a linguistic minority

• Hearing loss is not broken hearing

• There is no need to be “fixed”

• Deaf community is independent/competent

• Deaf adults are wonderful role models

Collaborative Relationships

Key Ingredients of Effective Collaboration:

Mutual interests and needs

Respect for perspectives

Shared authority

Frequent clear communication

Patience and persistence

Time

Parent Suggestions

From a parent:

“Put families first…

Communication is the key…

Work with the other professionals the family is dealing with…

(everyone on the same page)”

Real Choices

• Available/obtainable in the community

• Applicable/accessible for the family

• Actual services for infants/toddlers

• Family support and empowerment

• Formal and informal resource utilization

Decisions • Native language• Spoken English• American Sign Language• Total Communication• Signed systems• Cued Speech• With/without technology• Amount of family and professional collaboration

Advice FOR professionals

“In early intervention the parents choose the destination and how to get there. They may choose the scenic back roads or the interstate. EI services should be like AAA. They should give information on how to get to their destination, as much or as little information, maps, or guidebooks as the family wants.

Advice Cont’d

Families may change their minds about where to go or how to get there. They may choose not to drive at all but to hire a chauffeur or to take the train.

If we tell how to go, too insistently, they may tell us where to go.”

• Marnie Campbell, Kansas

Process

• Draft• Feedback• Review • Field test • Revise • Share• Re-evaluate

Colorado• CO Home Intervention Program(CHIP)

principles:– Making the program fit the family– Providing emotional support to the family– Helping the family navigate the system– Making facilitator accessible to families– Putting quality first, quantity second– Being flexible and sensitive to the family– Measuring the effectiveness of the interventions

• Partnering with Families, Clinical Training Manual 1993

Carolinas

TIPS IN DECISION MAKING: • Do you know what your options are

for communication?• Do you understand these options? • Have you examined them in person? • Do you understand all test results? • How much time do you have to devote

to learning the methodology?

– Beginnings, retrieved, 2002 www.beginnings.org

Connecticut

• Communication tips:

– Respond to your baby– Talk to your baby– Use facial expressions with your baby– Play with your baby– Read to your baby

– UNHS in CT

Recipe for Resources

• Listening to family experiences• Looking at professional information• Collecting examples of quality material• Collaborating on multi-media development• Learning from feedback of diverse groups• Creating combination of home grown and

nationally used resources

Diverse Advisors• Parents/families

• Therapists/educators

• Deaf /hard of hearing adults

• Administrators/service providers

• Cultural brokers/community members

• Composers/collaborators

Guiding Principles• Family centered philosophy• Multiple perspectives of deaf/hh• Multidisciplinary approaches• Multicultural sensitivity• Multiple skills levels• Multiple professionals roles• Multi-modalities of learning• Multiple settings

Quick ChecklistIs information:

1. developed and approved by a diverse group of users?2. clear, concise and appropriately comprehensive?3. parent friendly and professionally polished?4. supportive of parent’s rights and family expertise?5. presented in context of early intervention and teams?6. respectful of deaf persons and the Deaf community?7. available in alternative formats and multi-media for

different learning styles/ languages?8. easily available to families and professionals?9. inclusive of contacts for local and national information?10. Add an essential guideline