Deafblindness: Defining, Educating & Empowering Children Resources for families

1. Louisiana Deafblind Project Cassondra Glausier Coordinator Deafblindness:Defining, Educating & Empowering ChildrenResources for families

2. Goals of Training • Project Updates • What deafblindness? • Associated terminology • Prevalence of deafblindness • Causes of deafblindness • The challenges dual sensory impairments • Accurate identification practices • Resources for families and parents

3. Louisiana Deafblind Project • Technical Assistance & Dissemination • Transferred To the Human Development Center • Office of Special Education Programs (5year) • Children birth through 21 years old • Both vision & hearing loss present • Services are at no cost & are confidential • A Deafblind Project is located in every state

4. LSU Health Science -NOLA

5. Project Services • Training, Support, and Resources • Information and Referral • IEP & Transition Teams • Technical Assistance to Families & Educators • Statewide Project & Registry • Resource Library • LA Deafblind Project Website • Project Facebook Page

6. Why refer to the project? • Project website & other TA documents • Print or video resources • SPARKLE Project • Family-to-family network and call • Project sponsored trainings • Help in finding resources • Home and/or school visits • Facebook Page Resources

7. Information about the project How do you refer a child? What happens after a child is referred? What assistance can be provided? How does a family or service provider get assistance? Where is assistance provided? Is there a cost? What are the benefits?

8. What happens after referral? Referral packet reviewed Potential phone calls for clarification on some questions Intro binders mailed to parent and service provider: TA request forms, all tip sheets, newsletter & more Introductory phone call and/ or visit

10. Federal Definition of Deafblindness “Concomitant of hearing and visual impairments, the combination of which causes such severe communication, developmental and education problems that the individual cannot be accommodated in programs solely for individuals who are deaf or blind.” (2004, IDEA)

11. The Challenge of Deafblindness • Deafblindness is a disability of ACCESSto information and communication.

12. Project Definition of Deafblindness Children and youth with deafblindness have a combination of hearing AND vision loss that limits access to auditory and visual information, impacts communication, or restricts participation in daily activities and environments. The effects of the combined losses, even if both are mild, create unique challenges for the child, family, & educator.

13. Prevalence of Deafblindness • Affects 10,000 children across USA • 3 in 100,000 births • 91 children in Louisiana • 70 known causes • Louisiana high impact of Usher Syndrome • Any level of the dual sensory loss

14. The Diversity of “Deafblindness” Although “deafblind” implies a total absence of vision and hearing, this is not the case with most individuals who are deafblind. Most children and youth who are deafblind have some useable hearing and/or vision. There is no single profile of a learner who is deafblind.

15. Faces of Deafblindness

16. An individual who is deafblind is not: • A deaf individual who cannot see Or • A blind individual who cannot hear Deafness + Blindness = Deafblindness

17. Other Terminology • Deafblindness / Deaf-Blindness • Co-Occurring Sensory Loss • Dual Sensory Impairment / Loss • Combined Vision and Hearing Loss • Multidisabled (with sensory loss)

18. Primary Causes of Deafblindness • Usher Syndrome • CHARGE • Congenital Rubella • Severe Head Injury • Stroke • Cytomegalovirus • Meningitis • Undetermined • Hydrocephaly • Trisomy 21 • Cornelia de Lange • Fetal Alcohol Syndrome • Maternal drug use • Tumors • Hydrocephaly • Direct Trauma • Prenatal/Congenital • Postnatal/Noncongenital • Microcephaly

19. Critical Factors that Influence the Impact of Deafblindness Age at onset of loss Degree, type, and stability of vision and hearing loss Accompanying disabilities (90%) Support variables

20. Low Incidence Challenges • Children under identified • Children under referred • Under a different category • Community awareness • Understanding of the term deafblind • Accommodations consider both losses

21. Importance of Early Identification • Address sensory loss early to optimize sensory function. • Appropriate intervention of developmental and/or academic challenges. • Access and communication needs are identified and supported through strategies and possible adaptive equipment.

22. Impact of Deafblindness Sensory Social and Emotional / Relationships Communication Receptive Expressive Motor / Movement Limited access to information Cognitive / Learning / Academics Activities of Daily Living / Self Help

23. Learning Impact A great deal of learning comes from observing and imitating of what others are doing. Child may develop unique learning style. Concept development External / internal world confusion. May develop fragmented or distorted concepts due to lack of full experience. Abstract concepts may be more difficult to learn

24. Look for us on Facebook www.facebook.com/lsuladbp

25. Family Resources • Project SPARKLE – www.sparkle.usu.edu • Family Engagement Network

26. www.hdc.lsuhsc.edu/ladbp

27. National Resources • National Consortium of Deafblindness www.nationaldb.org • American Association of Deafblind www.aadb.org • National Association for the Deafblind www.nfadb.org • Helen Keller National Center www.hknc.org • Texas School for the Blind/Visually Impaired www.tsbvi.org • Perkins School for the Blind • www.perkins.org

28. State Resources • Louisiana Deafblind Project www.hdc.lsuhsc.edu/ladbp • Louisiana for the Deaf & Visually Impaired www.lsdvi.org • Federal Quota Funds robin.king@la.gov • Affiliated for the Blind www.Affiliatedblind.org • Lighthouse Louisiana www.lighthouselouisiana.org • Louisiana Rehabilitation Services www.laworks.org • Louisiana Center for the Blind www.lcb-ruston.com

29. If you have a child who has a hearing and vision loss at the same time and would like assistance who do you contact? Louisiana Deafblind Project

30. Contact the Project: Cassondra Glausier 504-556-7585 (Office) cglaus@lsuhsc.edu

31. Credits • Hand in Hand • Remarkable Conversations • Deaf-Blind Perspectives • Deaf-Blind Infants and Children: A Developmental Guide, by J.M. • McInnes and J.A. Treffry, University of Toronto Press, Toronto, Canada, 1997.National Consortium on Deaf-blindness • Thanks to the following projects: NV, NM, UT, NY, MN, CO, WY