Deafblindness: Identification & Referral Information (name of project) Goals of Training Participants will understand: • What deafblindness or a dual sensory impairment is • The diverse nature of deafblindness • Critical factors influencing the effects of deafblindness • The challenges or impact of dual sensory impairments • Accurate identification practices and outcome • Appropriate referral sources and practices. Faces of Deafblindness • (add the faces of the children from your project) Federal Definition of Deafblindness Deafblindness, or dual sensory impairment, refers to the concomitant hearing and visual impairments, the combination of which causes such severe communication and other developmental and education problems that the individual cannot be accommodated in programs solely for individuals who are deaf or blind. (2004, IDEA) State / Project Definition of Deafblindness • Project and/or State Definition Other Terminology • Deafblindness / Deaf-Blindness • Co-Occurring Sensory Loss • Dual Sensory Impairment / Loss • Combined Vision and Hearing Loss • Multidisabled (with sensory loss) 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. How Might Vision Be Impacted? • Low vision (visual acuity of 20/70 to 20/200) • Legally blind (visual acuity of 20/200 or less or field restriction of 20 degrees or less) • Light perception only • Totally blind Other Concerns • Diagnosed progressive loss or fluctuating vision loss • Suspected vision loss. Types of Vision Loss • History of Untreated Eye Condition(s) • Ocular Visual Impairment • Cortical or Cerebral visual impairment (CVI) • Learning Impacted by Vision – Functional Vision Loss How Might Hearing Be Impacted? Severity of Hearing Loss • Mild loss (26-40 dB loss) • Moderate (41-55 dB loss) • Moderately severe (56-70 dB loss) • Severe (71-90 dB loss) • Profound (91+ dB loss) Other Concerns • Diagnosed progressive loss or fluctuating hearing loss • Suspected hearing loss. Types of Hearing Loss • • • • • • • • Conductive Hearing Loss History of Otitis Media Sensorineural Loss Mixed Hearing Loss Auditory Neuropathy Central Auditory Processing Disorder Unilateral Loss Cochlear Implant Who is Deafblind? • The next series of slides will highlight what degree of vision and hearing loss would likely be combinations that result in deafblindness. Degree of Vision Normal Vision Low Vision (best corrected to 20/70) Blind legally,LP, field loss, totally) Progressive Loss CVI Degree of Hearing Degree of Vision Normal Hearing Hard of Hearing (mild-moderate) Normal Vision Low Vision Blind Progressive Loss CVI Deaf (severe to profound) Progressive Loss Auditory Neuropathy Degree of Hearing Degree of Vision Normal Hearing Normal Vision Normal for both Low Vision Blind Progressive Loss CVI Hard of Hearing (mild-moderate) Deaf (severe to profound) Progressive Loss Auditory Neuropathy Degree of Hearing Degree of Vision Normal Hearing Normal Vision Normal for both Low Vision Blind Progressive Loss CVI Hard of Hearing (mild-moderate) Deaf/Hard of Hearing (DHH) Deaf (severe to profound) Progressive Loss Auditory Neuropathy Degree of Hearing Degree of Vision Normal Hearing Normal Vision Normal for both Low Vision Blind Progressive Loss CVI Hard of Hearing (mild-moderate) Deaf (severe to profound) Deaf/Hard of DHH Hearing (DHH) Progressive Loss Auditory Neuropathy Degree of Hearing Degree of Vision Normal Hearing Normal Vision Normal for both Low Vision Blind Progressive Loss CVI Hard of Hearing (mild-moderate) Deaf (severe to profound) Deaf/Hard of DHH Hearing (DHH) Progressive Loss Depends on degree Auditory Neuropathy Degree of Hearing Degree of Vision Normal Hearing Normal Vision Normal for both Low Vision Blind Progressive Loss CVI Hard of Hearing (mild-moderate) Deaf (severe to profound) Deaf/Hard of DHH Hearing (DHH) Progressive Loss Depends on degree Auditory Neuropathy DHH Degree of Hearing Degree of Vision Normal Hearing Normal Vision Normal for both Low Vision Blind Progressive Loss CVI Hard of Hearing (mild-moderate) Visually Impaired (VI) Deaf (severe to profound) Deaf/Hard of DHH Hearing (DHH) Progressive Loss Depends on degree Auditory Neuropathy DHH Degree of Hearing Degree of Vision Normal Hearing Normal Vision Normal for both Low Vision Visually Impaired (VI) Blind VI Progressive Loss CVI Hard of Hearing (mild-moderate) Deaf/Hard of Hearing (DHH) Deaf (severe to profound) DHH Progressive Loss Auditory Neuropathy Depends on degree DHH Degree of Hearing Degree of Vision Normal Hearing Normal Vision Normal for both Low Vision Visually Impaired (VI) Blind VI (mild-moderate) Progres- Depends on degree sive Loss CVI Hard of Hearing Deaf/Hard of Hearing (DHH) Deaf (severe to profound) DHH Progressive Loss Auditory Neuropathy Depends on degree DHH Degree of Hearing Degree of Vision Normal Hearing Normal Vision Normal for both Low Vision Visually Impaired (VI) Blind VI (mild-moderate) Progres- Depends on degree sive Loss CVI Hard of Hearing VI Deaf/Hard of Hearing (DHH) Deaf (severe to profound) DHH Progressive Loss Auditory Neuropathy Depends on degree DHH Degree of Hearing Degree of Vision Normal Hearing Normal Vision Normal for both Deaf/Hard of Hearing (DHH) Low Vision Visually Impaired (VI) Identified as Deafblind (DB) Blind VI (mild-moderate) Progres- Depends on degree sive Loss CVI Hard of Hearing VI Deaf (severe to profound) DHH Progressive Loss Auditory Neuropathy Depends on degree DHH Degree of Hearing Degree of Vision Normal Hearing Normal Vision Normal for both Deaf/Hard of Hearing (DHH) DHH Low Vision Visually Impaired (VI) Identified as Deafblind (DB) DB Blind VI (mild-moderate) Progres- Depends on degree sive Loss CVI Hard of Hearing VI Deaf (severe to profound) Progressive Loss Auditory Neuropathy Depends on degree DHH Degree of Hearing Degree of Vision Normal Hearing Normal Vision Normal for both Deaf/Hard of Hearing (DHH) Low Vision Visually Impaired (VI) Identified as Deafblind (DB) Blind VI (mild-moderate) Progres- Depends on degree sive Loss CVI Hard of Hearing VI Deaf Progressive Loss Auditory Neuropathy DHH Depends on degree DHH DB DB (severe to profound) Degree of Hearing Degree of Vision Normal Hearing Normal Vision Normal for both Deaf/Hard of Hearing (DHH) Low Vision Visually Impaired (VI) Identified as Deafblind (DB) Blind VI (mild-moderate) Progres- Depends on degree sive Loss CVI Hard of Hearing VI Deaf Progressive Loss Auditory Neuropathy DHH Depends on degree DHH DB DB DB (severe to profound) Degree of Hearing Degree of Vision Normal Hearing Normal Vision Normal for both Deaf/Hard of Hearing (DHH) Low Vision Visually Impaired (VI) Identified as Deafblind (DB) Blind VI DB (mild-moderate) Progres- Depends on degree sive Loss CVI Hard of Hearing VI Deaf Progressive Loss Auditory Neuropathy DHH Depends on degree DHH DB DB DB (severe to profound) Degree of Hearing Degree of Vision Normal Hearing Normal Vision Normal for both Deaf/Hard of Hearing (DHH) Low Vision Visually Impaired (VI) Blind VI Progressive Loss Auditory Neuropathy DHH Depends on degree DHH Identified as Deafblind (DB) DB DB DB DB DB (mildmoderate) Progres- Depends on degree sive Loss CVI Hard of Hearing VI Deaf (severe to profound) Degree of Hearing Degree of Vision Normal Hearing Normal Vision Normal for both Deaf/Hard of Hearing (DHH) Low Vision Visually Impaired (VI) Blind VI Progressive Loss Auditory Neuropathy DHH Depends on degree DHH Identified as Deafblind (DB) DB DB DB DB DB DB (mildmoderate) Progres- Depends on degree sive Loss CVI Hard of Hearing VI Deaf (severe to profound) Degree of Hearing Degree of Vision Normal Hearing Normal Vision Normal for both Deaf/Hard of Hearing (DHH) Low Vision Visually Impaired (VI) Blind VI Progressive Loss Auditory Neuropathy DHH Depends on degree DHH Identified as Deafblind (DB) DB DB DB DB DB DB DB (mildmoderate) Progres- Depends on degree sive Loss CVI Hard of Hearing VI Deaf (severe to profound) Degree of Hearing Degree of Vision Normal Hearing Normal Vision Normal for both Deaf/Hard of Hearing (DHH) Low Vision Visually Impaired (VI) Blind VI Progressive Loss Auditory Neuropathy DHH Depends on degree DHH Identified as Deafblind (DB) DB DB DB DB DB DB DB (mildmoderate) Progres- Depends on degree sive Loss CVI Hard of Hearing VI DB Deaf (severe to profound) Degree of Hearing Degree of Vision Normal Hearing Normal Vision Normal for both Deaf/Hard of Hearing (DHH) Low Vision Visually Impaired (VI) Blind VI Progressive Loss Auditory Neuropathy DHH Depends on degree DHH Identified as Deafblind (DB) DB DB DB DB DB DB DB DB DB (mildmoderate) Progres- Depends on degree sive Loss CVI Hard of Hearing VI Deaf (severe to profound) Degree of Hearing Degree of Vision Normal Hearing Normal Vision Normal for both Deaf/Hard of Hearing (DHH) Low Vision Visually Impaired (VI) Blind VI Progressive Loss Auditory Neuropathy DHH Depends on degree DHH Identified as Deafblind (DB) DB DB DB DB DB DB DB DB DB DB (mildmoderate) Progres- Depends on degree sive Loss CVI Hard of Hearing VI Deaf (severe to profound) Degree of Hearing Degree of Vision Normal Hearing Normal Vision Normal for both Deaf/Hard of Hearing (DHH) Low Vision Visually Impaired (VI) Blind VI Progressive Loss Auditory Neuropathy DHH Depends on degree DHH Identified as Deafblind (DB) DB DB DB DB DB DB DB DB DB DB DB (mildmoderate) Progres- Depends on degree sive Loss CVI Hard of Hearing VI Deaf (severe to profound) Degree of Hearing Degree of Vision Normal Hearing Hard of Hearing Progressive Loss Auditory Neuropathy Normal Vision Normal for both Deaf/Hard of Hearing (DHH) DHH Depends on degree DHH Low Vision Visually Impaired (VI) Identified as Deafblind (DB) DB DB DB Blind VI DB DB DB DB Progres- Depends on degree sive Loss DB DB DB DB CVI DB (mildmoderate) VI Deaf (severe to profound) Degree of Hearing Degree of Vision Normal Hearing Hard of Hearing Progressive Loss Auditory Neuropathy Normal Vision Normal for both Deaf/Hard of Hearing (DHH) DHH Depends on degree DHH Low Vision Visually Impaired (VI) Identified as Deafblind (DB) DB DB DB Blind VI DB DB DB DB Progres- Depends on degree sive Loss DB DB DB DB CVI DB DB (mildmoderate) VI Deaf (severe to profound) Degree of Hearing Degree of Vision Normal Hearing Hard of Hearing Progressive Loss Auditory Neuropathy Normal Vision Normal for both Deaf/Hard of Hearing (DHH) DHH Depends on degree DHH Low Vision Visually Impaired (VI) Identified as Deafblind (DB) DB DB DB Blind VI DB DB DB DB Progres- Depends on degree sive Loss DB DB DB DB CVI DB DB DB (mildmoderate) VI Deaf (severe to profound) Degree of Hearing Degree of Vision Normal Hearing Hard of Hearing Progressive Loss Auditory Neuropathy Normal Vision Normal for both Deaf/Hard of Hearing (DHH) DHH Depends on degree DHH Low Vision Visually Impaired (VI) Identified as Deafblind (DB) DB DB DB Blind VI DB DB DB DB Progres- Depends on degree sive Loss DB DB DB DB CVI DB DB DB DB (mildmoderate) VI Deaf (severe to profound) Degree of Hearing Degree of Vision Normal Hearing Normal Vision Normal for both Hearing impaired Low Vision Visually impaired (VI) Identified as Deafblind (DB) DB DB DB Blind - VI DB DB DB DB DB DB DB DB DB DB DB DB (mild-moderate) Progres- Depends on degree sive Loss CVI Hard of Hearing VI Deaf (severe to profound) Hearing impaired Progressive Loss Depends on degree Auditory Neuropathy Hearing impaired Ask Yourself… 1. Does the learner have enough vision to compensate for his or her lack of hearing? 2. Does the learner have enough hearing to compensate for his or her lack of vision? 3. If the answer is no to either or both questions, the learner can be defined as being deafblind. (Alsop, 2001) Label Distinction • Deafblindness • Multiple Disabilities • When students are identified as having multiple disabilities rather than deafblindness, the impact and needs of the combined vision and hearing loss should be recognized and addressed (NCDB, 2007). Prevalence of Deafblindness National Statistics: • 3 in 100,000 births • Add age data from John K State Demographics • Identified children and youth in (state) • # __ of Girls • • • • • • # ___ of Boys # of infants and toddlers # of preschools # of elementary school age students # of middle school age students # of high school age students # of transition program age students Causes of Deafblindness • • • • • • Hereditary Chromosomal Syndromes or Disorders Prenatal / Congenital Complications Postnatal / Noncongenital Complications of Prematurity Leading National Causes • • • • • • • • • Heredity Prematurity Prenatal Complications (TORCH) Postnatal Complications (meningitis) CHARGE Syndrome Microcephaly Hydrocephaly Usher Syndrome Undetermined Examples of DB-Related Syndromes Aicardi Bardet-Biedl Cri du Chat Fetal Alcohol Hunter Pierre Robin Sturge-Weber Usher( I, II, II) Alport Cockayne Down Goldenhar Marfan Refsum Treacher Collins Alstrom Cogan Edwards Hallgren Mobius Stickler Turner Leading Causes in (State) • (personalize to your state) How is Deafblindness Identified • Eye Care Specialists confirm visual diagnosis, status, treatment options, and prognosis • Audiologists confirm auditory status and listening device options. • School personnel, as appropriate to eligibility, determine functional status of vision and/or hearing. The Challenge of Deafblindness • The challenge faced by people with both hearing loss and vision is much greater than just the sum of the two losses. The problem is not additive, but multiplicative. (-vision) x (-hearing) = (challenge)2 • In many ways, deafblindness is a disability of access to information and communication. “People rely upon information about the world around them, in order to learn, function, and interact with others. Vision and hearing are the major senses through which this information is access. Individuals, who have vision and hearing loss or deafblindness, are unable to access this essential information in a clear and consistent way. Deafblindness is a disability of access – access to visual and auditory information.” (Alsop, Blaha, & Kloos, 2000) Importance of Identification Concomitant vision and hearing loss is likely to impact all facets of development. Early identification helps to ensure: • early possible treatment of sensory loss conditions 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. Critical Factors that Influence the Impact of Deafblindness • Age at onset of loss • Degree, type, and stability of vision and hearing loss • Accompanying disabilities • Support variables Critical Factors that Influence the Impact of Deafblindness • Age at onset of loss – Congenitally deafblind – Adventitiously deafblind – One sense congenitally impaired; other loss acquired Critical Factors that Influence the Impact of Deafblindness • Degree, type, and stability of vision and hearing loss – Low Vision to Blindness – Mild to Severe Hearing Loss – Ocular and/or cortical – Conductive , sensorineural, auditory neuropathy, and/or central auditory processing – Progressive losses Critical Factors that Influence the Impact of Deafblindness •Accompanying disabilities –Cognitive impairments (66%) –Communication / Speech / Language (need data) –Physical impairments (57%) –Complex health care issues (38%) –Behavior challenges (9%) –Other (30%) • It is estimated that more than 90% of children who are deafblind have one or more additional disability or health problem. Support Variables • Family / Community Support • Financial Support • Educational Team Support • Adapted Equipment Support • Specialized Instruction Support 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 Deafblindness affects EVERY aspect of an individual’s life. Collaboration is Critical • Unique demands are placed on families who have a child with a vision and hearing loss • Many professionals will be involved with a child who has a hearing or vision loss • Successful transitions require careful and respectful teamwork • Appropriate monitoring of child progress requires all members to watch carefully (Chen, 1997; Miles, 1995) Impact of Deafblindness: Emotional Attachment • Challenges to emotional attachment and bonding for both caregivers and child. • Much of our early bonding occurs through use of eye contact, reading and responding to body language, facial expressions, and sounds. • A confusing or unpredictable response from infant/child that is difficult to interpret can lead to a weak or unpredictable response from the child. Social & Emotional Development • Bonding and attachment behaviors • Relationships with family, peers, providers, workers • Sense of self and body image • Reinforcement (motivation) • Perception of safety • Isolation Sensory Impact • When one or two senses are compromised or absent, care should be taken to understand the sensory learning profile of the child. • Sensory use is very individualized. • The learner may rely greatly on a sense that has even significant compromise. • The child may be at risk for sensory overload. • Touch may or may not be a dominant learning avenue initially. Communication Impact • Everyone communicates. • Early communication involves reading cues and reinforcing intention. Reading cues is an ongoing communication skill. • Early communication involves movement. • The learner may not understand his or her actions influence those around him or her or caused something to happen. Communication Impact • Limited or reduced opportunities to acquire symbols to represent their communication. • All learners need repetitive, meaningful exposure to incidental use of objects, pictures, sign language, speech. • May have difficulty finding communication partners. • May have difficulty finding common topic. Behavior is Communication • • • • • • • • All behavior is communicative. Everyone communicates needs and wants. Behavior does not have to be intentional to be communicative. Behaviors may be the result of the lack of a viable communication system. Behaviors serve a purpose for the child. Behavior is influenced by events in the setting. Understanding the message behind “problem” behaviors can be difficult. If a learner cannot express wants and needs, behavior issues are likely to develop. Accessing Information Impact • If a child can access information, he or she is in a position to learn. Access is our job. • Vision and hearing are our distance senses • Hearing is our only sense that can “bend around corners.” • Vision takes in more information all at once than any other sense (gestalt and detail). • Even a mild hearing / vision loss can have a serious impact. The Ability to Learn • Learners who are deafblind are not limited by what they can learn but by how and what we teach them using effective strategies 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 Learning Impact • Incidental learning More likely to require formal / deliberate instruction on “topics” others acquire incidentally • Mental imagery Challenging to construct mental images of simple objects • Academics Access to the general education curriculum Accommodation and modifications Access to materials, technology , and equipment Adapted materials / equipment Movement Impact • We learn through our movement and exploration. • Vision loss may impact postural tone. • Poor or absent vestibular and/or proprioceptive function will impact balance and movement. • Vision loss impacts learning and moving through imitation. • Seeing objects and hearing sounds influences motivation to interact with the environment • When vision and hearing is impaired, motivation to move may be diminished. • There may be challenges with concentrating on moving when being asked to communicate (etc.) Activities of Daily Living / Self Help Deafblindness may impact all areas of self care. • Sleeping be on a different schedule. • Feeding may be affected due to a variety of reasons. • Role of incidental learning / imitation. • Further complications due to possible health concerns. • Need for appropriate role models for self care. It Is Important to Remember: • Children who are deafblind- Need to have appropriate pacing. Require thoughtful and unique educational approaches Can participate in any activity Communicate in a variety of ways What if you are working with a learner who is deafblind (within a specified age group per state) and would like assistance? Contact the (name of project and contact info) 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? Why refer to the project? • Project newsletter & other TA documents (e.g., Tip sheets) • Print or video resources • Parent-to-parent network • Family-to-family network and listserv (western states) • • • • Project sponsored trainings Help in finding resources Home and/or school visits Annual parent conference 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 National Resources • National Consortium on Deafblindness (NCDB) • National Family Association for Deaf-Blind (NAFDB) • American Association of the Deaf-Blind (AADB) • Helen Keller National Center (HKNC) Regional Resources • Family to Family Listserv • Family Directory State Resources • Project contact information 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