Communication Decisions and Services Online Presentation for Deaf Education - Parent Infant Michigan State University Marilyn Sass-Lehrer, Ph.D. Gallaudet University

Goals What Decisions? Roles and Responsibilities Identify the decisions families face; Understand the challenges Roles and Responsibilities Understand the professional’s role using “Informed Choice” Understand how child and family characteristics influence decisions ASL and English Bilingual Approach Describe what it is Identify features of an Effective Program Identify FAQs about a Bilingual Approach Information and Resources Identify strategies for promoting decision making Identify the “evidence base” and resources

Decisions, Decisions, Decisions Technology Services Communication Hearing Aids

Decision Making: A Difficult Process Perceived Urgency Strong Opinions Professional Bias Not all Options Presented Resources Not Available Insufficient Information

Misinformation All children with hearing loss should sign If children sign then they won’t talk Children who are deaf cannot learn to talk You have to choose signing or talking Depends on the extent of the hearing loss All children should try speech first ASL is not a “real” language Children who speak don’t need signs Children with cochlear implants should not sign

Questions to Consider: What is bias? Should professionals be “neutral”? What does informed choice mean? Can/Should families make decisions? What do families need to make decisions? Do all families want to decide for themselves? How can professionals be most helpful?

What is Bias? A bias is a prejudice in a general or specific sense, usually in the sense for having a preference to one particular point of view or ideological perspective. However, one is generally only said to be biased if one's powers of judgment are influenced by the biases one holds, to the extent that one's views could not be taken as being neutral or objective, but instead as subjective. wikipedia.org/wiki/Bias

In the Words of the 14th Dalai Lama A biased mind never sees the complete picture, and any action that results will not be in tune with reality…I often say that while one can adhere to the principle of “one truth, one religion” at the level of one’s personal faith, we should embrace at the same time the principle of “many truths, many religions” in the context of wider society. (The Washington Post, Oct. 21, 2007).

What is the Evidence?

Is one Technology, Communication Approach, or Program More Effective than Another? Research Methodology Difficulties: Quality and quantity of studies; Size of samples, Generalizability; Diversity of population; Lack of long term outcomes; Lack of studies with children who were identified early

What is the research suggesting on CI? Younger is better for ease in typical progression of spoken language development No age limit for “some” benefit (older children, teens, senior citizens) Children with implants have diverse spoken language outcomes related to a variety of factors. Children with additional special needs can benefit Importance of early language in any modality for improved spoken language outcomes with implant Sub dividing 2 and under Cochlear Implant Education Center, Gallaudet University

What is the Research Suggesting about Communication Approaches? No evidence that one communication approach is best for all Language growth is the critical measure of effectiveness Services must support Communication Approach Exposure to dual communication modes does not impede progress across developmental domains Individual child characteristics and overall development inform decisions Multi-sensory communication options should be based on individual characteristics and environmental conditions Bilingualism (ASL and English) does not impede language growth and may provide a supportive benefit to both languages

What is the research suggesting regarding Programming? Programs should be comprehensive Family-Centered Relationship-Based Emphasizing Family Involvement/Parent-Child Communication How much, when, where has little impact on outcomes hours per week public vs private home vs center Evidence suggests that “specialists” make a difference

Receptive Communication Continuum Fully Visual Communicator Mostly Auditory V VA Av A Continuum concept: Bettie Waddy-Smith Laurent Clerc National Deaf Education Center

Receptive Communication V Depends on visual information ASL/Signs VA Depends on ASL/signs; obtains some benefit from auditory information VA Equally depends on and able to use ASL/signs and auditory information via Spoken English Av Depends on Spoken English, sometimes needs Sign to clarify Spoken English A Depends on auditory information via Spoken English

Expressive Communication Continuum Fully Sign Communicator Mostly Oral S SO Os O Continuum concept: Bettie Waddy-Smith Laurent Clerc National Deaf Education Center

Expressive Communication S Uses Signs/ASL Only So Uses Signs/ASL; some oral communication SO Equally able to use sign and oral communication Os Uses oral communication; signs for clarification O Uses oral communication only

Cochlear Implant Education Center, Gallaudet University Where a child fits on the continuum depends on the coming together of many impacting factors (and may change over time) Cochlear Implant Education Center, Gallaudet University

ASL English Bilingual Approach Philosophy: Deaf and hard of hearing children should acquire, learn and use two languages (their native sign language and the spoken language(s) of their country) Goal: Children to become academically and linguistically competent in both ASL and English

Principles Based on principles of 2nd language acquisition Supports language and literacy development as well as cognitive and social development “Best of both worlds” Language acquired through meaningful interactions with fluent users of the languages ASL is foundation (and/or bridge) to English Both languages continue to develop

Acquisition Watching/Attending Signing Fingerspelling Fingerreading Writing/Typing Lipreading Speaking & Listening

Educational Implications ASL and English are languages of instruction and interaction Children have full access to both languages Visually rich environment Which language? Codeswitching Rules for when and where to use which language Communication and Language Plan Bilingual Approach – ASL is dominant language with early exposure to English English as 2nd Language – ASL first – then English

ASL Programs for Families Sign Language Programs Needs/Interests of Parents Times, Places Convenient Visual Communication Strategies (Mohay, 2000) FAQs (See ASDC website)

Informed Choice and Information Comprehensive, meaningful, relevant, un-biased Accurate, up to date, evidence-based Evaluative information is essential (risks and benefits) Convey unpredictability or range of outcomes Information should promote involvement Promote knowledge and understanding Young, Carr, Hunt, Skipp, Tattersall, 2006

Assessment-Based Process F.A.M.I.L.Y. Assessment Approach Auditory Skills Language and Communication Skills Play Skills Motor Skills Family Needs Stredler-Brown (2003). www.csdb.org/chip/build blocks.html

What Professionals Should Tell Families Communication is not always “either/or” Decisions take time and may change over time No evidence that signs impede speech Evidence that signs facilitate language acquisition Better Language means better speech Focus must be language access and use – not form Language delays are difficult to overcome

Language is the “Holy Grail”

High Expectations: Benchmarks EI by 6 months Maintain language commensurate with hearing peers One year’s growth in one year time Adapted from Stredler-Brown, 2005

How Families Make Decisions Families use a variety of strategies to gain information Families give a lot of thought to decisions Decisions made are frequently changed Level of hearing loss influences approach selected Deaf/HH adults and families influence decisions Families want knoweldgable professionals Perceptions of what professionals should do varies Wainscott & Sass-Lehrer (In preparation)

Decision Making Model Professional Decision Professional is responsible for making decisions for child Guided Decision Professional guides and directs families to the “right” decisions Collaborative Decision Professionals and family are partners in making decisions Informed Decision Families have the information they need to make the right decisions Wainscott, In Preparation

What Families Want: Advice for Professionals Comprehensive, accurate, up to date, evidence-based Information Honesty, Patience Open-Minded Flexible Cultural Sensitivity Resources (Families/Deaf-HH Adults) Monitoring Progress Support Families’ decisions Meadow-Orlans, Mertens& Sass-Lehrer, 2003; Wainscott, Croyle & Sass-Lehrer, 2006; Young, et al.; 2006

Additional References McLaughlin, L., Small, A., Spink-Mitchell, C. Cripps, J. (2004). A Parent Guidebook: ASL and Early Literacy. Mississaugua, Ontrario: Ontario Society for the Deaf. Meadow-Orlans, K.P., Mertens, D., Sass-Lehrer, M. (2003). Parents and their deaf children: The early years. Washington, DC: Gallaudet University Press. Schwartz, S. (2007) Second Ed. Choices in Deafness. Bethesda, MD: Woodbine. Young, A., Carr, G., Hunt, R., McCracken, W., Skipp, A., Tattersall, H. Informed choice and deaf children: Underpinnings, concepts and enduring challenges. Journal of Deaf Studies and Deaf Education 2006: 11: 322-336

So….. What did you learn or find interesting in this session? How could you connect something you learned with your work with children and families