Kim Hodge Advisory Teacher for DB/MSI Children and Young People in Suffolk

1. Kim HodgeAdvisory Teacher for DB/MSI Children and Young People in Suffolk

2. Defining Deafblindness • Persons are regarded as deafblind if they have a severe degree of combined visual and auditory impairment resulting in • Problems with communication • Problems with receiving and giving information • Problems with mobility • This group includes those deafblind from birth (congenital) • Those who develop dual impairment in later life (acquired)

3. Relatively few people are profoundly deaf and totally blind, the term dual sensory impairment covers all categories of combined visual and hearing impairment

4. Remember • Issues around Communication Accessing and Gaining Information Mobility

5. Low incidence • Until recently very few surveys into numbers of deafblind individuals • 1993 estimated 23,000 deafblind people in the UK • Later studies confirm it is reasonable to assume 40 people per 100,000 • Incidence is much higher in those aged over 75 • Possibly 1in 6 in this group • Half of all 80 year olds with a visual impairment also have a hearing impairment • Although a low incidence most professionals have little if any experience of the complex nature and issues of deafblindness

6. A Hidden Impairment • Inadequate support to meet difficulties in communication and mobility has meant many are unable to access their community • Most time is therefore spent in the home or in a residential service • Until recently distinctive difficulties associated with dual sensory impairment have not been recognised • Deafblindness can mask considerable unrealised abilities, potential is hidden due to poor opportunities for learning and low expectations • Labelling - explain

7. Crucial impact of the age of onset of Deafblindness There is a fundamental difference between someone who has never seen or heard clearly and someone who loses the ability after sharing an understanding of the world and the ability to communicate. • Loss of independence • Loss of independent communication • Loss of access to information • A gradual loss may drag out the process of adjustment • Psychological effects • Emotional consequences • Impact on family friends and colleagues previously accessed independently

8. Continued • A distorted perception of the world • Withdrawing, becoming isolated The implication for those suffering sudden loss • Loss of confidence • Emotional stress and upheaval • Loss of motivation • Loss of independence and having to develop unique learning styles For further information see handout

9. Practical Exercise Simulation of Deafblindness Exercise

10. Deafblindness– Common Causes (1 of 2) • Congenital Rubella Syndrome • CHARGE • Usher I,2,3 • Down Syndrome • Prematurity and/or cerebral palsy • Toxoplasmosis

11. This is x Diagnosis of Usher Syndrome Type one A Profound Bilateral Hearing loss Bilaterally Cochlea Implanted at fourteen months Is using Speech and British Sign Language Is Registered Severely Sight Impaired

12. Photo – with permission

13. Pupil Information • Pupil aged 22 months • Nursery setting one day per week • Intervenor service in nursery and in the home an additional 1 day per week • Family support worker from my team trained in visual and hearing loss ( deaf herself ) works with family on programme devised to stimulate vision and language with xand follows up my work weekly, also supports xin activities in the visual stimulation room at a local special school • Weekly QT - MSI support and VI support • Speech and language support • BSL user developing speech since cochlea implantation

14. X visual summary • Has had numerous clinical tests and ERGs performed locally at Addenbrookes and Moorefields. • Hospital has used Cardiff cards, functional tests MRI, CT scans etc • Has a significant rod, cone dysfunction • Functionally sees best when holds objects at about 5-10 cms • Can fix and follow well with her eyes • Marked right convergent squint • Developing some right Amblyopia - patching ( occulsion therapy) daily for half an hour • Retinal dysfunction has been assessed as probably causing significant deterioration in her visual function including night blindness ( RP ) in the near future

15. Is registered Severely Sight Impaired • Has been Genetically tested • Has undergone all tests enthusiastically and willingly apart from visual field tests ( perimetry) - thus discussion on this assessment procedure • Due to the former statement xhas been part of trials for a newly devised test – to be known as KidZeyeZ • Understanding her visual deteriation is vital as she has reduced ability to use audiological means and maximising vision is essential prior to loss – for example she is using sign language rapidly with useful vision we can teach her these skills which can be converted to on body signs as additional clues in the future if necessary

16. Power point photo with permission

17. Deafblindness – Common Causes (2 of 2) • Age related • Accident / Trauma • Brain tumour • Stroke • Infections e.g. encephalitis

18. Communication • Communication is the exchange of information by any means possible • Successful communication relies upon the person sending their message being able to convey meaning to another in a way that is understood • This implies both receptive and expressive communication is used and understood

19. Communication • Most people are brought up with one communication system • If a person become deafblind their system may no longer be possible e.g. sign language ( e.g.) • Reduction in information may effect the persons ability to make informed decisions • Not only does the deafblind person have to adapt but also family and friends

20. Communication tactics • Gain attention – approach from front • Allow time for the person to become aware of your presence • Gently touch arm if necessary • Introduce yourself • With speech • Finger spelling • Signifier • Through touch ( explain )

21. Development of CommunicationDevelopment of Social Interaction through imitation • Be available • Interaction is led by the deafblind person • Being responsive • Imitation in the person’s language • Development of turn-taking • Development of trust • Extend the activity • Understanding of the ability to affect change

22. Creating a Communicative environment • Communication with a familiar and trusted person • Involvement in everyday and motivating activities • Use appropriate methods of communication • Allow for time to process information • Development of routines To encourage • Repetition development • Consistency of approach of anticipation • Provide a reason to communicate

23. Typical Child Development • Through interaction with parents/carers • Imitation • Eye contact • Vocalising • Turn taking • Audio-visual clues • Language/conversation • Incidental learning • Distance/exploration • Control over carer

24. Context of Typical Language Development • Interaction: • With people • With objects • Daily Routines: • Eating • Bathing • Dressing • Playing • A Secure Environment: • A safe environment • A high level of attention from carers

25. Typical Language Development • From birth: • Bonding between carer and child, eye contact, close contact. • Carer responds to baby’s noises and movements, eg crying, gurgling, body movements

26. Typical Language Development • First Year: • Babies learn they can have some control over the environment • The adult begins to interpret the child’s communication and attach meaning to it • The adult begins to use more complex language • Second Year: • Child begins to use gesture, objects, first words and simple phrases • Thereafter, more complex language develops

27. MIS Child Development • Limited eye contact • Limited hearing • Difficulty processing information • Problems with responding to carers’ communication signals • Isolation • Passive/aggressive behaviour may result from a distorted perception

28. The Impact of Congenital Deafblindness on Language Development • Bonding may be inhibited due to: • Medical intervention • Physical disability • Physical disability • Inability to make eye contact or respond to voice • Inability to understand the world around • Initial inability to develop two-way communication

29. Socialisation may be inhibited due to: • Reduced opportunities to interact with people and objects • Withdrawal from social contact • Demotivation and isolation • Inappropriate behaviour • Learned helplessness/passivity • Limited repertoire of communicative behaviours and responses, eg stilling, startling instead of holding hands, vocalising

30. Access to information is restricted due to: • Limited access to people, objects and events • Limited ability to learn through touch • Information is distorted leading to problems of processing • Shared attention

31. Practical Exercise Getting your message across !!!!! Give it a go You may not talk !!!!

32. Ways in which to Communicate with a Deafblind person List ideas and known methods – flip chart

33. Communication with Deafblind People • Speech • Sign language • Deafblind manual • Hand on Hand • Hand under hand • Body signs • Gesture • Objects of reference • Symbols / pictures/photos • Written word • Block • Braille • Moon • Communication aids

34. Summary of key factors influencing communication • The age or onset of Deafblindness • Degree of deafblindness and use of residual skills • The lack of knowledge about the Deafblind person • Additional disabilities • Experience • Personal space issues / embarrassment/ • Life experiences • Communication method prior to DB

35. Communication • Practice deafblind manual in pairs • Practice block in pairs • Discuss Haptic Perception

36. Communication tactics • Gain attention – approach from front • Allow time for the person to become aware of your presence • Gently touch arm if necessary • Introduce yourself • With speech • Finger spelling • Signifier • Through touch ( explain )

37. Creating a communicative environment • Communication with a trusted and familiar person • Involvement in everyday activities • Use of appropriate methods of communication • Allow TIME t PROCESS information • Development of routines, repetition and consistency of approach • PROVIDE a reason to communicate

38. Practical Exercise Practical exercise to simulate as best possible

39. Section Seven Assessment Section seven guidance under the 2002 health act and updated in 2009 states…. i.e. it is not guidance it is a legal requirement says Authorities have to • Identify, make contact with and keep a record of deafblind people in their catchment area including those with multiple disabilities including dual sensory impairment • Carry out assessments by trained person, in particular to access the needs for one to one human contact , assistive technology and rehabilitation • Ensure they are able to access specifically trained one to one support workers for those people they assess as requiring one.

40. Making Sense of the World • Our exploration of, understanding of and interactions with: people, relationships, places, journeys, events or objects, are experienced as a result of the complex processing of a range of information gathered from the available senses. • As the breadth of information is received, it is evaluated; the evaluation acted upon and the results monitored. • However, whilst key, response triggering information may be received through only one of the senses – the smell of gas, the sound of a scream or an approaching lorry, the sight of a falling object – very little of our understanding of, and response to, the world is based merely on single sensory perception.

41. The following table gives us a reminder of the breadth of sensory information sources that might contribute to our understanding of, and response to, the world

42. The Anatomy and Function of Touch • Information about touch is received through sensory receptors in the skin, and in joints, muscles and tendons • In the inner layer of skin – the ‘dermis’ – there are at least five different types of nerve endings which respond to pressure on the skin, to pain, to the movement of hair and to changes in temperature.

43. In very basic terms, the tactile/tactual sensory signals are transmitted to the spinal cord and then to the cortex of the brain via two major pathways: • The MLS (medial lemniscal system) which conveys signals about limb, position, pressure and vibration • The ALS (anterolateral system) which relays signals about possible ‘threats’ to the body, including deep pressure, temperature and pain.

44. The language used to describe touch is diverse. Touch is a series of sensations which can be described as being either ‘Tactual’ (that is, touches given and received through human/animal contact), or ‘Tactile’ (that is, touch cues from inanimate surfaces that provide direction, activity and confirmation). • Information concerning size, shape, texture, temperature and movement can be accessed through touch. As has been suggested, deafblind people may have a highly developed sense of touch and there may be some crude parallels which can be drawn with a sighted person’s use of vision.

45. Some people have very little heat or tactile sensitivity. For others, this sensitivity can be extreme to the point of pain. • Some children and adults don’t like clothing; others will pinch and scratch their skin. • Touch differs from vision in that the tactile equivalent of a visual impression cannot be achieved in the tactile equivalent of a quick ‘glance’.

46. Taste (Gustatory Sense) • The use of the sense of taste may be overlooked as an important information gathering sense. • The sense of taste is intricately connection to the sense of touch and awareness of temperature (and other characteristics such as texture) means that the mouth provides a multitude of sensory information from a single experience. • Imagine eating freezer cold chocolate chip cookie ice-cream. The single experience involves flavour, consistency, texture and temperature. • Bearing this in mind, it is noted here that difficulties around eating are common in congenitally deafblind children. The development of oral skills may include toleration, acceptance, discrimination, recognition and perhaps sensory desensitisation.

47. Smell (Olfactory Sense) • The use of smell as a sensory source of environmental information is often overlooked. • Smell can be useful in three areas: • Firstly, where the smell of objects, people or events are motivating to the person. • Secondly, where the smell can be powerful in prompting information for locating. • Thirdly, it can be used in association with other sensory information to help distinguish or confirm information.

48. Smell is a sense, which is often used alongside the sense of taste, for example in the identification of food. However, smell can be used in other ways. • Particular scents can be associated with an environment, a particular room or with the identification of both people and things. • As with the other senses, smell can be a powerful stimulant of memory and is therefore emotionally significant. • Smell is also a distance sense bringing us information about our environment in a way that is different to the other senses.

49. Vestibular Sense • The Vestibular system refers to the structures of the inner ear that detect movement and changes in the position of the head. For example, the vestibular system tells you when your head is upright or tilted. If this function in the inner ear isn’t working correctly, a person may be apprehensive about changing surfaces, height or coping with climbing or descending. For some people it may result in them actively seeking intense sensory experiences, such as self stimulatory behaviour.

50. Proprioception • The proprioceptive system refers to the components of muscles, joints and tendons that provide a person with subconscious awareness of body position. When this position is functioning well it is responsible for providing the body with signals to allow us to do things such as sit properly in a chair, judge the weight of an object we are lifting, step off the curb smoothly, use a spoon or button a shift.