Interventions for Children with Vision and Hearing Loss

1. Interventions for Children with Vision and Hearing Loss 32nd Annual KDEC Conference February 27, 2014 Presenters: Megan Cote & Rebecca Obold-Geary Co-Directors of the Kansas Deaf-Blind Project roboldgeary@kssdb.org mcote@kssdb.org kansasdeafblind.kssdb.org

2. The Kansas Deaf-Blind Project • A Federally Funded 5 Year Grant • (we are currently in year 1) • Based at the Kansas State School • for the Blind in KC, KS Our Mission: To identify and serve learners with Deaf-Blindness and their families in the state of Kansas.

3. Intro to Deaf-Blindness: DEAF-BLINDNESS does NOT imply that an individual sees or hears absolutely nothing DEAF-BLINDNESS simply means that the individual experiences both a vision and a hearing loss, to some degree.

4. Key Questions: Two key questions to ask, when assessing whether a learner has DB: 1. Does she have enough vision to compensate for her lack of hearing? 2. Does she have enough hearing to compensate for her lack of vision? (John McInnes)

5. Deaf-Blindness is a disability… • about INFORMATION GATHERING • which LIMITS ACCESS • which is EXPONENTIALLY MORE than a hearing loss plus a vision loss

6. Deaf-blindness… • affects two of a learner’s three DISTANCE SENSES and • necessitates that she use IMPACT SENSES (i.e., taste, touch, kinesthetic) to gather information

7. Types of “Information Gathering” (i.e., LEARNING) • Direct learning • Secondary learning • Incidental learning

8. Here are some stats… In the United States, over 10,000 children and youth (birth - 22 years) experience deaf-blindness. • Of this 10,000, approximately 5% experience total deafness and total blindness • But approximately 91% of these 11,000 children and youth also experience additional disabilities

9. ETIOLOGIES of DB In general, children might be at risk for having combined vision and hearing losses , due to a: • hereditary syndrome or disorder • pre-natal condition • post-natal condition • family history • head injury or direct trauma to ear / eye • prematurity

10. CATEGORIZING DB 1. by time(s) of onset of sensory loss 2. by degrees / types of sensory loss 3. BOTH—by time(s) of onset and degrees of sensory loss By far, the best predictor of an individual learner’s needs / skills is the #3 model of categorization.

11. Deaf-blind Simulation How did you feel during the simulation? What is the object? What were the properties of the object that helped you identify the object? What are the concepts related to the object?

12. Sensory Perspectives • Sensory Perspectives DVD A set of interactive simulations of a variety of conditions related to deafness, blindness and deaf-blindness. https://hopepubl.com

13. GENERAL CHARACTERISTICS Learners with DB often demonstrate: • inconsistent responses to sounds or visual images (i.e., use of remaining skills) • a distorted perception of the world, due to lack of non-distorted information from the distance senses • balance problems • delays in motor development • tactile sensitivity or defensiveness • an overactive startle response

14. GENERAL CHARACTERISTICS (con’t.) • difficulty interacting with things in the environment in a meaningful way • difficulty in communicating with people in a meaningful way • difficulty in establishing / maintaining inter-personal relationships • difficulty in generalizing information • light gazing • stereotypy (fear, confusion, sensory deprivation)

15. CHARACTERISTICS RELEVANT TO LEARNING It is important to remember that learners who have DB often: • lack the ability to anticipate events • are deprived of many of the most basic extrinsic motivations (i.e., curiosity); sensory info is so distorted it is ineffective as a source of motivation to explore and interact with people and the environment • will not benefit from being left alone, for long periods of time, with toys / materials

16. CHARACTERISTICS RELEVANT TO LEARNING (con’t.) • cannot benefit from incidental or secondary learning, but must be taught through direct instruction • cannot independently learn from mistakes, because she is unable to correctly understand the results of her actions • may not benefit from group instruction, alone, because she cannot learn from watching and listening to others • The best way to informally gauge cognitive skills is by observing the way she “remembers”

17. LEARNERS WITH DB Almost always experience… • feelings of vulnerability • more security / safety in a seated position • lengthier periods of time, learning to trust others / the world • challenges counteracting boredom

18. LEARNERS WITH DB (con’t.) And… • perceive time very differently • respond positively to enhanced textures • find it difficult to interpret movement • fatigue more rapidly than same-aged peers • demonstrate increased tactile sensitivity, particularly around the face

19. LEARNER NEEDS A learner who has deaf-blindness needs to… • understand CONCEPTS through MORE THAN ONE sensory /communicative mode • have the opportunity to learn and interact in an ENHANCED CONTEXT, in order to know what is going on around her

20. LEARNER NEEDS Deaf-blindness requires a learner’s partners to take time to… • plan how a learner will RECEIVE information in every activity • plan what a learner will DO in every activity • consider the IMMEDIATE physical, visual, and auditory ENVIRONMENTAL CONTEXTS of every activity

21. LEARNER NEEDS When you meet a person who has DB… • treat her as you would anyone else • address her directly, not through an interpreter, intervener, or anyone else • let her know who you are, and when you enter / leave the room • use the words, “see,”“hear,” and so on naturally • describe things that are happening, or are about to happen • remember that behaviors affect attitudes!

22. LEARNER NEEDS When communicating with a person who has DB… • be in close proximity to her (yet respectful) • alert her that a communicative interaction is about to begin or end • use multi-modal communication • wait for her to respond • provide choices, in order to allow her some control

23. Interventions Communication Environmental Social/Emotional Concept development

24. Communication • Multi-modial communication • Objects • Coactive signs • Signals and cues • Calendar systems • Wait time • Watch entire child http://library.tsbvi.edu/Play/83

25. Resources for Communication • Communication Matrix by Charity Rowland www.communicationmatrix.org The Communication Matrix is designed to assess the expressive communication for learners who use very early stages of communication and progress slowly. Pre-intentional through beginning language are addressed in relation to refusing, obtaining, social interactions and seeking information.

26. Resources for Communication • Communication Map by Kathleen Stremel http://www.oregondb.org/Assess.html • Kansas Deaf-Blind Project Learning Modules: Communication Mapping training.distancementorship.org The Communication Map is designed to assess expressive and receptive communicative intents and forms. The visual profile provides information for short and long term programming.

27. Resources for Communication • Watkins, S. & Clark, T.C. (1991). A coactive sign system for children who are dual-sensory impaired. American Annuals of the Deaf, 136, (4), 321-324. • Project Salute • www.projectsalute.net • http://www.projectsalute.net/Learned/Learnedhtml/Coactive.html

28. Environmental Considerations • Vision • Contrast • Size • Lighting • Hearing • Noise to sound ration • AcousticsTactile/touch • Olfactory • Tactile/touch • Taste • Proprioceptive and Vestibular

29. Resources for Environmental Considerations • National Center on Deaf-Blindness https://nationaldb.org/library Environmental Consideration Checklist by Dr. Mary Morse • Perkins Webcasts: Adapting Environments for Individuals with Vision Loss by Darrick Wright http://www.perkins.org/resources/ • 10 Issues to Always Consider When Intervening for Students with Deafblindness by David Wiley http://www.tsbvi.edu/resources/3114-10-issues-to-always-consider-when-intervening-for-students-with-deafblindness

30. Social Emotional • Encouraging Relationships and Bonding • Fostering Trust • Stress • Intervener Support

31. Resources for Social Emotional • SPARKLE www.sparkle.usu.edu • Interveners www.intervener.org

32. Concept Development • Concepts vs. Skill • Concepts • Concrete concepts (i.e. chair) • Semi Concrete concepts (i.e jumping) • Abstract Concepts (i.e. nervousness)

33. Six areas of concept development affected by DB • Objects exist • Objects have permanence • Objects differ • Objects have names or labels • Objects have characteristics • Objects have functions or use

34. Resources for Concept Development • Perkins. Strategies for Early Cognitive Skills/Concept Development http://www.perkinselearning.org/ Cause and Effect Object Functions Object Permanence Taking Turns • SPARKLE http://www.sparkle.usu.edu/Topics/concept_development/index.asp • What a Concept by Jim Durkel at the Texas School for the Blind https://www.tsbvi.edu/seehear/spring00/concept.htm • Teaching Strategies and Content Modifications for the Child with Deaf-Blindness by Kate Moss at the Texas School for the Blind https://www.tsbvi.edu/seehear/archive/strategies.html

35. If I suspect that I have a learner with Deaf-Blindness, what do I do? • Go to kansasdeafblind.kssdb.org • Download the application and instructions. • Mail the application and supporting documents to: Kansas Deaf-Blind Project Rebecca Obold-Geary 1100 State Ave. Kansas City, KS 66102 • Questions: contact Rebecca Obold-Geary roboldgeary@kssdb.org or 913-305-3087

37. Kansas Deaf-Blind FUND If a child is on the Deaf-Blind Registry, the educational team can apply for materials to support the learner- up to $3,000 annually. This is done through Joan Houghton at KSDE or her assistant, Cynthia Penrod. Applications are submitted in the Spring.

38. Kansas Deaf-Blind PROJECTvs.Deaf-Blind FUND Project: Federally Funded Based at Kansas State School for the Blind Fund: State Funded Based at KSDE under Joan Houghton One of only 2 states in the country to have such an allocation.

39. How does the Kansas Deaf-Blind Project provide support? • Provide free TA in the school & in the home. • Provide parent scholarships for training- to attend conference(s), Project SPARKLE. • Provide state-wide trainings & district trainings • Intervener training scholarships @ USU. • Family weekends. • Partner with Families Together to offer trainings. • Facebook page. • Parent-to-Parent Mentorship. • Distance Mentorship. • Access to free on-line training modules related to Deaf-Blindness.

40. The Kansas Deaf-Blind Project kansasdeafblind.kssdb.org KS DB Family Specialist: Dinell Smith breesmother@gmail.com KS DB Project Directors: Megan Cote- mcote@kssdb.org Rebecca Obold-Geary- roboldgeary@kssdb.org

41. Kansas Deaf-Blind Project Learning Modules Twelve modules developed by Dr. Susan Bashinski: training.distancementorship.org 1. Interactions with Touch 2. Interactions with Objects 3. Calendar Systems 4. Communication Mapping 5. Development of Communicative Intentionality

42. Kansas Deaf-Blind Project Learning Modules 6.Gestural Development 7. Hand under hand strategies 8. Piaget and the symbolization continuum 9. Utilizing Routines 10. Introduction to Vision Loss 11. Introduction to Hearing Loss 12. Introduction to Learners with Deaf-Blindness To receive a user name and password email mcote@kssdb.org

43. On-line Module RESOURCES Kansas Deaf-Blind Project Learning Modules East Carolina University deaf-blind modules mast.ecu.edu/picker.php Select Students with Deafblindness (left column): Modules: Introduction, Developmental Impact, Educational Implications East Carolina University Mini Modules http://www.ecu.edu/cs-educ/ci/sped/dbproject/Mini-Modules.cfm

44. Intervener training opportunities Credential Program: • Utah State University www.usu.edu • www.intervener.org Other Training • Open Hands Open Access: Deaf-Blind Intervener Learning Modules nationaldb.org • East Carolina University http://www.ecu.edu/cs-educ/ci/sped/dbproject/DB-Intervener-Certificate.cfm

45. Additional Resources • National Center on Deaf-Blindness nationaldb.org literacy.nationaldb.org • Home Talk http://documents.nationaldb.org//HomeTalk.pdf • Tips for Home and School from Nevada Deaf-Blind Project http://www.unr.edu/ndsip/

46. Additional Resources continued • Washington Sensory Disabilities Services: Deaf-Blind www.wsdsonline.org • Perkins School for the Blind: Webcasts www.perkins.org look for Teaching Resources • KS DB Library loans for teams working with a learner on the Kansas Deaf-Blind registry kansasdeafblind.kssdb.org

47. ***REMEMBER*** • Learners who have deaf-blindness are an incredibly heterogeneous group • Deaf-blindness is a disability about information gathering! • Partnering with a learner with deaf-blindness involves INVITING THE CHILD “OUT” to join the work and to build levels of connection with her • A learner with deaf-blindness is NOT a “deaf” child who cannot see or a “blind” child who cannot hear. Deaf-blindness is unique and complex disability.

48. SUMMARY A child with deaf-blindness is NOT • a “deaf child” who cannot see or • a “blind child” who cannot hear Deaf-blindness is a unique and complex disability!