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Aims

The aims of this session relating to Intellectual disability are to:

  • Help students to understand the context of normal childhood development and factors that may impact on childhood development;
  • Introduce the concept of growing up with an intellectual disability and the socio-cultural impact of this.

The aims of this session relating to Audiometry are to:

  • Understand the concepts of a conductive and sensorineural hearing loss and the features of each;
  • Learn about the different types of otitis media and the signs, symptoms and treatment of each;
  • Understand why children are particularly prone to middle ear infection;
  • Understand the basic concept of an audiogram and the difference between air conduction and bone conduction.

Key concepts

  • Intellectual disability: education, social and health support for families with a child with an intellectual disability.
  • Audiology presentations: conductive hearing loss, sensorineural hearing loss, otitis media, glue ear, audiograms, air conduction, bone conduction.

Resources

Bring your student guides and audiology group presentation PPTs.

Key references

Article 25 of the UN Convention on the Rights of Persons with Disabilities

http://www.un.org/esa/socdev/enable/rights/ahc8adart.htm#art25

Group 1 presentation

  • a. What is a conductive hearing loss? Describe some common examples of conductive hearing loss.
    • Conductive hearing loss is anything that blocks or interrupts sound’s passage through the external and middle ear
    • Examples:
      • Hardened earwax
      • a foreign object
      • abnormal bone growth
      • middle ear infection
  • b. What is a sensorineural hearing loss? Describe some common examples of a sensorineural hearing loss.
    • Sensorineural hearing loss is where sound reaches the inner ear, but a problem in the inner ear, cochlear nerve or the brain itself, prevents hearing
    • Examples:
      • Age – presbycusis
      • Repeated noise exposure
      • Ototoxic drugs
      • Congenital disorders
  • c. What is a mixed hearing loss?
    • A combination of the two
    • Eg: malformation of the outer and inner ear

Group 2 presentation

Sweet presentation for this: File:SGS6_Otitis_media_PP.pptx‎

  • d. Why may hearing be affected by a cold or congestion due to a cold/flu? Look at diagram of the ear.
    • Mucus build up during a cold can block the Eustachian tube and fill the middle ear
    • The tube is important because it lets airflow through the ear to maintain health and drain infected fluid
  • e. What is otitis media?
  • Otitis media is inflammation of the middle ear
    • 3 types: acute, chronic and otitis media with effusion (OME)
    • OME
      • Children between 6 months and 2 years most vulnerable
      • Infection causes local inflammation of the Eustachian tube causing blockage and fluid build up in the middle ear with possible infection
  • Fluid surrounds the middle ear and prevents vibration of the tympanic membrane
  • Symptoms
    • Asymptomatic
    • Hearing loss
      • Can lead to impaired speech and development
    • Pressure, pain in ear
    • May be irritable and have problems sleeping
    • May have problems with balance
    • Fever, malaise (symptoms specific to type of infection)
    • Vomiting, diarrheae
  • Treatment:
    • Pain-killers, antibiotics, ear drops
    • If repeated attacks – insert a grommet
      • Tube to allow draining of the ear
  • Signs
    • Tympanic membrane bulging
    • Redness, inflammation
  • Children get otitis media more often than adults because:
    • Eustachian tube is more horizontal, narrower and shorter
    • Adenoids are larger, may block pharyngeal opening of the auditory tube
    • Immune system is not fully developed until age 7
    • Muscles holding auditory tube open

Group 3: audiograms

  • An audiogram is a chart that shows hearing in relation to the normal range
    • Hearing within the normal range is normally defined as > 25dB HTL (decibels hearing threshold level)
    • Chart measures frequency in Hz on the x-axis and intensity of sound on the y-axis
      • Thus, test is performed for a specific frequency, the intensity at which a patient can identify the sound 50% of the time is recorded and graphed
    • Can be used to test air and bone conduction and thus used to diagnose air and bone conduction problems
  • Air conduction is conduction of sound involving the external pathway, ie from the external ear to the middle ear, then to the internal ear
  • Bone conduction is conduction of sound that bypasses the external ear and middle ear and directly stimulates the inner ear
  • Doesn't assess quality of the sound - sometimes people can hear the sound but can't make out words
  • Tests:
    • Weber test
      • Normal hearing: equal on both sides
      • Sensorineural loss: louder on side unaffected
      • Conductive loss: louder on affected side (less ambient noise, can hear bone conduction better)
    • Rinne test
      • Normal hearing: air conduction louder than bone conduction
      • Sensorineural loss: air conduction louder than bone conduction, but hearing worse than normal range
      • Conductive loss: bone conduction louder than air conduction because conductive pathway blocked

Audiogram analysis

For more, see wikipedia:Deafness. If you're interested, look at wikipedia:Tinnitus

  • Sensorineural
  • Equal reduction in air and bone conduction
  • Conductive hearing loss
    • Not equal conductive loss in bone and air conduction (greater loss in air conduction)
    • Eg: otitis media
  • Mixed
    • Both bone and conductive loss abnormal, conductive more abnormal than bone

Society and intellectual disabilities

Read this http://www2.ohchr.org/english/law/disabilities-convention.htm


TheoriesOnDisability.png


  • What issues are going to affect William compared to Alex in the next few years?
    • Different rate of meeting milestones
  • 3 models that you can use to frame your perspective. Which would you choose and why?
  • Copy photographs
  • Which of the definitions (developmental delay, developmental disability and intellectual disability) defines Down syndrome?

Definitions:

Developmental delay - a functional term denoting a situation where specific developmental milestones have not been met within the period considered to be normal. Makes no casual attribution or prognostic interference.

Developmental disability - a diagnostic term denoting a specific disability (functional impairment) which is permanent and usually occurs early in life, but can occur any time before 18 years of age

Intellectual disability - a diagnostic term denoting a pattern of disability characterised by an IQ of less than 2 standard deviations below average, a significant impairment in adaptive functioning which occurs before 18 years of age and is permanent; Note that intellectual disability is a developmental disability; but a developmental disability does not necessarily include an intellectual disability, e.g. asperger syndrome


ARTICLE 25 – HEALTH

States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender sensitive, including health-related rehabilitation. In particular, States Parties shall:

(a) Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided other persons, including in the area of sexual and reproductive health and population-based public health programmes;

(b) Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and the elderly;

(c) Provide these health services as close as possible to people’s own communities, including in rural areas;

(d) Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care;

(e) Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, which shall be provided in a fair and reasonable manner;

(f) Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.

Group work

  • Psychosocial Aspects of Intellectual Disability: Small Group Questions (15 mins)
  • Life Phase: Baby/child – adolescent (0-12 years)
  • Consider William’s life between the ages of 0 to 12 years. Also consider the general issues associated with living with an intellectual disability at this age.
  • Below are selected health and developmental considerations relevant to developmental disabilities as starting points for your consideration:
  • Health
    • Syndrome-specific health issues
    • Health issues related to genetic disorder, cerebral palsy, other neurological or organ damage
    • High rate of sensory impairments and physical disabilities
  • Developmental
    • slower to reach milestones of physical development
      • motor control; walking; bowel and bladder control o hyper- or hypo-activity
    • Greater supports required to reach various developmental milestones
    • Reduced cognitive capacity
    • Reduced communication ability (expressive and receptive can vary) and the use of alternatives e.g. non-verbal communication
  • Adaptive functioning
    • varies greatly depending on the severity of intellectual disability
    • may be able to reach certain developmental milestones (or reach then at a later stage) with extra supports, depending on level of disability. Areas of adaptive functioning that may be affected include:
      • continence; eating/feeding self; washing and cleaning self; dressing self; preparing food and drinks In your small group, discuss the following questions. Nominate a spokesperson who will give a small report to the whole group at the end. You should all make notes, as this will help with your own learning, and your spokesperson may forget to mention something you think is important.

You have 15 minutes to complete this activity.

  • Question 1
    • When would William’s Down syndrome have been discovered? Depends on prenatal testing, but might have gotten an idea from Nuchal translucency, then might have had amniocentesis or CVS (chromosomal analysis: trisomy 21 or stuck to chromsome 14/15). Without testing, the doctor may be able to note Epicanthal fold, Simian crease, space between toes, cyanosis, etc
    • List some of the possible expectations that William’s parents may have had that have been affected by his diagnoses of DS and consider the influence of social or cultural factors on these? Expectations: may have been concerned about future health (higher risk of various diseases), expectations about schooling/university, ability to go to work afterwards, need of a full time carer, financial costs (more treatment, care, time).
  • Question 2
    • What must the family consider in order to help them to adjust and manage their needs and the needs of their child? How might these things be difficult? Need support from family/friends, would have an impact on parents' mental health, need help from carers, need teachers to help, make sure siblings get enough attention, bullying, financial support
    • What are some of the positives that could emerge for the family? Strengthen relationships (due to extra care, increase communication, bring family together), bring happiness (new child, satisfaction of caring for someone), appreciation of small achievements for their child
  • Question 3
    • William’s speech is delayed. Why? Why might this be of concern to William’s mother, and how would you respond to William’s mother’s concerns? Physical difficulty in talking (protruding tongue, jaw smaller), also has mental/developmental delay in speech, hearing difficulties. Concern - child can't communicate especially since other children of the same age are ahead. Reiterate that DS has different developmental milestones - don't compare herself to other parents, be patients, still practice speech with William - he's still learning even though he's learning more slowly
    • Would you expect that William can achieve toilet training? How might his achievement differ from other children? Yes. He will achieve it, but it will be slower, started later, more intensive, must be repeated over and over.
    • Why is it important to assess William’s development early, and which areas of William’s development should be assessed? Monitor mental development, giving you an idea of how severe the effect of DS is on him. Get an idea of physical risk factors and screening for these. Brain plasticity - if you provide a better environment when young, they will be less effected.
  • Question 4
    • What are possible reasons for problem behaviour? How would you investigate William’s recent behavioural problems? Why is it important to investigate the behaviour? Behaviour is often used when they can't communicate verbally. If they're having problems communicating, they may throw tantrums to try to get what they want (learn from behaviour - if you give them a drink when they tantrum, they'll keep doing it to keep getting a drink) Underlying pain/medical problems.

Life Phase: Adolescent – young adult (12-20 years)

In this section we want you to think about how William’s or another person with intellectual disability’s experience of adolescence will be the same or different to that of someone without an intellectual disability. For most people, going through puberty is a time of:

  • vulnerability to mental disorders – a time of high risk for their emergence o possible escalation of behavioural problems
  • developing a sense of identity – who am I, what do I believe, what am I interested in, what am I capable of, how do I fit into the world?
    • gradually joining the world of adults – one of power, autonomy, choice, freedom, and responsibility
    • getting a drivers licence
    • registering to vote
      • leaving school and getting a job
      • reaching sexual maturity
    • growing interest in sexuality and relating to another person sexually
    • learning how to relate romantically/sexually, how to have a close relationship with someone
    • learning about appropriate public versus private situations
    • learning about appropriate menstrual care

Consider William’s life between the ages of 12 to 20 years. Also consider the general issues associated with living with an intellectual disability at this age. In your small group, discuss the following questions. Nominate a spokesperson who will give a small report to the whole group at the end. You should all make notes, as this will help with your own learning, and your spokesperson may forget to mention something you think is important.

You have 15 minutes to complete this activity.

  • Question 1
    • Would someone with Down syndrome or another intellectual disability go to high school? What factors might influence this?
      • Yes.
      1. The degree of intellectual disability/level of functioning/independence
      2. Availability of supportive care and special needs at school
  • Question 2
    • How would William’s experience of adolescence be similar/different to his non-disabled peers? As William goes through puberty and later reaches the end of adolescence, what are some of the triggers for frustration he may feel?
    • Can someone with ID drive/get a driver’s licence? Why/why not? If you think it is possible, what factors would affect the situation? Can someone with ID register to vote? Can someone with ID vote? Why/why not?
      • Similarities: Hormones/sexual development/need education about their changing feelings
      • Frustrations: developing a sense of identity, Possible problems with self-image due to their distinct physical features. lack of independence, seeing non DS friends getting jobs etc, hormonal frustrations
      • Yes they can drive if they're not colour blind and if the degree of ID is not too severe
      • Yes they can register to vote because they have the same political rights (under the UN article 29 of Convention on the Rights of Persons with Disabilities)
  • Question 3
    • Would a young person with Down syndrome or an intellectual disability become interested in relating to someone else sexually? Is someone with an intellectual disability able to have a romantic relationship? Have you ever seen someone with Down syndrome or an intellectual disability portrayed as having a sexual or romantic relationship in the media? If not, why do you think this might be the case?
    • Do young people with DS or ID need information about sex, relationships, birth control and STIs? What kind of information and support might they need? **What are some of the potential sources of frustration for a young person with ID/DS who wants to relate sexually to another person?
      • Yes they would. Yes, Forrest Gump got it on with Jenny. However, in general, society is very perfectionist and so doesn't tend to portray these people in mainstream media.
      • Yes they need information about sex etc. They need the same information as everyone else except perhaps in more simple-to-understand forms.
      • Frustration: normal frustrations others face, communication, access to information they can understand and relate to
  • Question 4
    • Consider the increased risk of mental disorder people with intellectual disabilities, and adolescence as a time of especially increased risk. Aside from biological and neurological risk factors, what social and psychological factors could contribute to this risk?
    • Frustrations at not fitting in, feeling isolated, bullying, peer pressure, people manipulating them/exploiting their ID, medical patronisation/paternalism, lack of independence and feeling helpless/underpowered.

Life phase: Adulthood (20-40 years)

Consider William’s life between the ages of 20 to 40 years. Also consider the general issues associated with living with an intellectual disability at this age. Below are some of the relevant health and medical considerations:

  • Higher incidence of
    • Sensory impairments
    • Limitations to mobility & physical exercise o Pain
    • Continence and Constipation
    • GI disorders
    • Poor oral health, diet & obesity
    • Mental disorders
  • Under detection and under treatment of health problems

In your small group, discuss the following questions. Nominate a spokesperson who will give a small report to the whole group at the end. You should all make notes, as this will help with your own learning, and your spokesperson may forget to mention something you think is important. You have 15 minutes to complete this activity.

  • Question 1
    • Make a list of common choices and decisions people may make during these years. How might having an intellectual disability influence capacity to be involved in and make such choices? What are the wider implications for quality of life?
      • Moving out, independence, deeper relationships, marriage, career options, employment
      • Depends on the level of ID, necessity for a carer, may have careers limited by their condition
      • Quality of life:
  • Question 2
    • Consider the poorer health status of people with intellectual disabilities. What are the possible reasons? Why are people with intellectual disabilities less likely to make healthy lifestyle choices and more likely to suffer from poor health?
      • Might not have access to simple information regarding diet, need appropriate education/access to information to make the correct decisions
  • Question 3
    • Imagine William is experiencing abdominal symptoms, and his GP has referred him to a gastroenterologist. The gastroenterologist believes a colonoscopy is required to investigate the problem. How should the doctor proceed – does he need to gain consent before he conducts the procedure?
    • William is unwilling to have the procedure. The doctor is confident that the recommended course of action is in William’s best interests. Can the doctor perform the procedure anyway? What should the doctor consider in this situation?
      • He needs to gain consent. The Dr should inform all guardians and make sure they can communicate in simple terms, inform William about the procedure, risk factors, how it will be carried out.
      • The doctor can't perform the procedure without consent (this is assault).
      • Doctor needs to discuss with William and his guardians the advantages/disadvantages of the procedure.
      • If people don't have the mental capacity to understand what is happening, you may be able to shift guardianship
  • Question 4
    • Mental health problems are more common in people with intellectual disabilities than they are in the non- disabled population.
    • Consider what might happen if someone with an intellectual disability develops a mental illness – what factors might complicate their seeking help, diagnosis, care at home and medical management?
      • Might not know how to seek help, or recognise symptoms. Might not be aware of the signs/symptoms. Might be too self-conscious, not want to seek help, not want to cause problems for their carers. Might be hard to diagnose their conditions (distinguish between DS and mental disorder)
      • Depends whether they have a supportive environment to discuss mental health with those around them
      • If on multiple medications, it might be hard to safely medicate them for psychiatric disorders

Life phase: Older adulthood (40+ years)

  • Consider William’s life when he is older than 40. Also consider the general issues associated with living with an intellectual disability at this age. Below are some of the relevant health and medical considerations:
  • Disorder/syndrome specific health issues:
    • Down Syndrome: dementia, cataracts, thyroid disorders, seizures, coeliac disease, cardiovascular disease
  • General age-related issues
    • Sensory
    • Mobility & physical exercise
    • Pain
    • Falls & accidents
    • Continence and Constipation
    • GI disorders
    • Poor oral health, diet & obesity

In your small group, discuss the following questions. Nominate a spokesperson who will give a small report to the whole group at the end. You should all make notes, as this will help with your own learning, and your spokesperson may forget to mention something you think is important. You have 15 minutes to complete this activity.

  • Question 1
    • Why do people with ID experience higher mortality than their non-disabled peers? Consider: life-expectancy, general age-related issues, disorder/ syndrome specific issues, and socio-economic issues.
      • More susceptible to other conditions (mental disorders, CVD, cataracts, celiac disease etc), less able to look after themselves (more susceptible to lifestyle diseases i.e. poorer nutrition, less knowledge about exercise ), poor oral health, financial aspect, few social support, less able to make decisions and actions that prioritise their actions
  • Question 2
    • Consider William at 45 years of age. He has been living at home, cared for by his mother who and step father, who are now in their 70s and 80s. What are the challenges the family may be facing at this stage?
      • Parents are elderly, not as competent as before (reduced mobility), won't receive the same level as care as before, limited social interaction, William is also likely to have mental disorders (like dementia) making it more difficult for the family
      • Financial issues (parents are old, not much chance they have money saved up for when they're dead)
      • Future of his care??? When they're dead
    • A social worker has been meeting with the family and making preparations for alternative accommodation for William. What are possible reasons why the family is making this change? Consider the magnitude of this situation for William. Describe the challenges he is facing, and the consequences for him. How could he be supported through this transition?
      • They're making arrangements now rather than later so he is provided for when his parents do pass away. Good to do it when his parents are still alive, to make the transition easier. Consistent social worker - same person in his life to make the transition easier and introducing the social worker eariler.
      • Wouldn't get as much attention in an institution compared to parents
      • Might have developed a specific method of communication with parents that might not be understood by new carers
  • Question 3
    • In our society, adults without intellectual disabilities are very well informed about the health issues associated with ageing. List some of these.

Now consider how the experience of the health issues associated with ageing may be different for someone with an intellectual disability.

      • Normal population - Sensory issues, motility, physical exercise, pain, GIT disorders, poor oral health, diet, obesity, osteoporosis, dementia, hearing problems, Parkinson disease, menopause and prostate changes
      • ID - more susceptible to health issues and more complicated health issues (lifestyle disorders e.g. diabetes, CVD)
      • ID - may not understand condition well (might not be able to present to someone and present/realise/communicate problem)
  • Question 4
    • William has now been living in a group home for five years. He has been receiving monthly visits from his parents, who have limited mobility due to their health problems. Even after five years, William has had difficulty adjusting to his new living environment. This may in part be due to his dementia, which was diagnosed two years after his move. His step-father has recently died and staff at the facility are concerned that learning of his death will cause William distress and further reduce his functioning.
    • Comment.
      • Pros and cons of informing W of the death of his stepfather
        • Pros: right to know, dementia - tell him before he forgets the information
        • Cons: might make his condition worse, cause emotional distress, scare him

Large group closing discussion (10 mins)

TheoriesOnDisability.png

  • Discuss 1: What do people with ID want from you as a doctor?
    • Respect
    • Valuing as a person
    • Provide support when needed - medicolegal, medical psychological
    • Advice - medical plus healthy living
    • Advice on relationships: family, friends, work, romantic, sexual
    • Universalism
  • Discuss 2: How can medical practitioners incorporate a human rights framework in their practice with patients with an intellectual disability?
    • Provide same quality of care
    • Free and informed consent
    • Human rights, dignity, autonomy, needs
    • Respect and accommodate the special communication/support needs
    • Be aware of and practice in accordance with ethical standards
    • Prevent secondary disabilities

Preparation for SGS 7

  • Audiology cases: In the next SG we will look at some examples of cases with their audiograms and discuss these. Bring along your lecture notes and notes from today’s SGS.
  • Alternate case 2: Investigating group should bring along their presentation (5 mins with 5 mins Q and A) for the first question.
  • “Grow Strong”:
    • View the “Grow Strong” video on UNSWTV (26 mins).
    • Students should each post two comments – one on each of the questions below and a reply to one other post for each. Facilitator can take part and should take a look on Monday / Tuesday morning prior to SGS to see how the discussion and check that everyone is taking part.
      • What are some key elements of approaches that have proven successful at improving the health of Indigenous children, with respect to the following areas AND WHY do you think these have worked?:
  • Indigenous community participation and/or control
  • Coordinated approach between different government and community services/agencies
  • Address barriers preventing Indigenous people accessing health care
  • Focus on preventive health care
  • Other
    • You are employed in a position where the federal health minister has asked you to design a health program to improve childhood health outcomes in a semi-isolated rural area with residents who are mostly living within a low socio-economic band and of whom, 75% identify as Aboriginal. List the elements of intervention/ health care that you would include in your design. Bring this to SGS 7 for discussion.