Creating Partnerships from Apples and Oranges 2006 National

Creating Partnerships from Apples and Oranges 2006 National Early Hearing Detection and Intervention Conference, Washington, DC Beth S. Benedict, Ph. D. , Gallaudet University Barbara Raimondo, J. D. , Parent/Child Advocate Marilyn Sass-Lehrer, Ph. D. Gallaudet University Washington, DC

Faculty Disclosure Information ¡ ¡ In the past 12 months, we have not had a significant financial interest or other relationship with the manufacturer(s) of the product(s) or provider(s) of the service(s) that will be discussed in our presentation. This presentation will (not) include discussion of pharmaceuticals or devices that have not been approved by the FDA or if you will be discussing unapproved or “off-label” uses of pharmaceuticals or devices.

Understand EHDI Goals for Collaboration Learner Outcomes 1. 2. 3. 4. Appreciate Expertise of Hard of Hearing and Deaf Adults Be Aware of Potential Barriers to Full Participation Identify Strategies to Support Partnerships

About Us and Why We Think This is Important Introductions ¡ Barbara’s experience ¡ ¡ ¡ Marilyn’s experience ¡ ¡ Parent/Parent Advocate Teacher Educator/Researcher/ Advocate Beth’s experience ¡ Consumer/Collaborator/Researcher/ Advocate

Barbara’s Perspective ¡ ¡ ¡ Adaptation to child who is different than expected Sense of diversity of people with hearing loss - Seeing child as an individual Knowing life experiences of deaf individuals – How that helps parents Learning to communicate Deaf/HH individuals are part of the “village” Enrichment of own lives

Marilyn’s Experiences As a teacher educator ¡ As a researcher ¡ As a professional participating in ¡ l l l ¡ Professional Organizations Conferences Meetings and other Activities As a collaborator l Teaching, Research, Professional Activities

Beth’s View: Still a Long Way to Go Role Model ¡ Collaboration with hearing parents of a deaf child ¡ Misconceptions about deaf people ¡ Deaf people as human beings ¡ Experiences, Rights, Survival, Struggles and Successes ¡

Basic Human Rights ¡ States should involve organizations of persons with disabilities in all decision-making relating to plans and programmes concerning persons with disabilities or affecting their economic and social status. l ¡ United Nations Standard Rules on the Equalization of Opportunities for Persons with Disabilities, Rule 14 States should recognize the right of the organizations of persons with disabilities to represent persons with disabilities at national, regional and local levels. States should also recognize the advisory role of organizations of persons with disabilities in decision-making on disability matters. . . l United Nations Standard Rules on the Equalization of Opportunities for Persons with Disabilities, Rule 18

Rationale for Deaf/HH Involvement Children's Health Act of 2000 ¡ . . . Early intervention includes referral to. . . community, consumer, and parent-based agencies and organization. . ¡ In carrying out programs under this section, the Administrator of the Health Resources and Services Administration, the Director of the Centers for Disease Control and Prevention, and the Director of the National Institutes of Health shall collaborate and consult with. . . consumer groups of and that serve individuals who are deaf and hard-of-hearing and their families. . . persons who are deaf and hard-of-hearing and their families. . . other qualified professional personnel who are proficient in deaf or hard-of-hearing children's language and who possess the specialized knowledge, skills, and attributes needed to serve deaf and hard-of-hearing newborns, infants, toddlers, children, and their families. . .

Children’s Health Act (cont. ) ¡ ¡ . . . The Administrator of the Health Resources and Services Administration, the Director of the Centers for Disease Control and Prevention, and the Director of the National Institutes of Health shall coordinate and collaborate on recommendations for policy development at the Federal and State levels and with the private sector, including consumer. . . and education professional-based organizations. . . Referral options should include linkage to. . . national and local consumer, self-help, parent, and education organizations. . .

Joint Committee on Infant Hearing (2000) ¡ ¡ ¡ . . . To achieve informed decision-making, families should have access to professional, educational, and consumer organizations; and they should have opportunities to interact with adults and children who are hard of hearing and deaf. . . Early interventionists should ensure access to peer and language models. Peer models might include families with normal hearing children as well as children or adults who are hard of hearing and deaf as appropriate to the needs of the infant with hearing loss. . . [Professional education programs in] universities should also introduce training in. . . deaf culture.

National Consensus Conference (2005) ¡ ¡ Parents must have opportunities to meet and interact with children and adults who are deaf or hard of hearing. . . There should be support services to assist families. . . includ[ing]. . . deaf/hard of hearing community participation. State Advisory Boards should include representatives from the deaf and hard of hearing communities as well as professionals who are deaf and hard of hearing. The advocate/coordinator for the family. . . should provide. . . contact with adults who are deaf and hard of hearing. . .

What About the Research? Families who have regular contact with deaf adults obtain significant benefits including: – Social Support – Improved Communication – Acceptance and Understanding Meadow-Orlans, Mertens & Sass-Lehrer, 2003; Watkins, Pittman, & Walden, 1998; Hintermair, 2000

What About the Research? ¡ English language performance better with experiences with Deaf Mentors l ¡ Social-emotional development supported by opportunities for interactions with Deaf adults/children l ¡ Watkins, Pittman, Walden, 1998; See Calderon & Greenberg, 2003 Children/families in “Shared Reading Program” more frequent book sharing l Delk & Weidekamp, 2001

Yes, but…… ¡ Will deaf children today be different from the deaf children in the past? l Early identification and technology has changed the outcomes for deaf children ¡ ¡ Many programs are unable to demonstrate outcomes that indicate that children are performing similarly to children without hearing loss Programs that have excellent outcomes still show gaps in language (Stredler Brown, 2005)

Yes, but…. ¡ Are Deaf adults today different from today’s deaf children? l l l Lack of early identification and intervention Lack of access today’s technology (visual/auditory) Lack of opportunities to participate in all aspects of life (ADA) ¡ Diversity among deaf people l ¡ Common pursuit of full access to communication l l ¡ Experiences, levels of hearing loss, outlooks on life, etc. Audition, vision Difference – how this feels Strategies to obtain information

Yes, but…. ¡ Will deaf children be more like hearing children than “deaf” children? ¡ ¡ Deaf children may actually be more like today’s “hard of hearing” children Hard of Hearing children and/or those with unilateral hearing loss are not performing as well as hearing children l Bess, 2004; Stredler Brown, 2005

Experiences and Lessons Learned ¡ Participation in Professional Activities l l - Attendance vs Participation and Involvement Access to Communication - Requesting Interpreters – Who are they for? - FM System – Working? Everyone Uses? - Conversation Control – Use of Visuals Burden of representing all Deaf/HH people - One versus Several

Strategies for Involvement and Leadership Finding skilled/experienced Deaf/HH people ¡ Ensuring Communication Access ¡ l ¡ Representing the Diversity of the Community l ¡ No interpreters? What to Do? Hearing level, communication approaches, race, ethnicity, etc. Encouraging/supporting Deaf/HH Leadership

Examples of How to Involve Deaf/HH ¡ ¡ ¡ ¡ State Advisory Boards and Councils Professional Committees and Policy Boards Conference Planning and Plenary Presenters Early Intervention Professionals Parent to Parent Programs Pay Deaf/HH Mentors Professional Development and Training for Deaf and Hearing Other

Checking In…. Monitoring the Effectiveness ¡ ¡ ¡ How did the meeting go? What can we do to ensure full and meaningful participation by everyone? What can we do to ensure that everyone has full access to all the information? How do we demonstrate our value for Deaf/HH and Hearing partnerships? How can we ensure the continued involvement of the Deaf/HH communities? Other?

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