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Introduction to intellectual disability

Who is Michael Bartels?

  • Former Chair of NSW CID Council for Intellectual Disability
  • I have an Intellectual Disability (ID)
  • I’ve played indoor cricket for the past 11 years for NSW & represented Australia!
  • Karaoke
  • Employed by the RTA – “lollypop man”

Why am I here today?

  • Educate on ID (Intellectual disability)
  • My story
  • Myths (and facts)
  • “Do”s and “Don’t”s

Educate on ID

  • Create awareness (1-3% of population)
  • Respect
  • Human Beings
  • Best judge of our own needs
  • People with ID learn differently – need simple and structured information

My story – challenges and achievements

  • Born 1967 – mum had complications at birth
  • Bullied badly at school and tipped head first into swimming pool (cause of his disability)
  • Was only just passing exams at school – sent to SSP (Special Studies Program) school
  • Prefect at school for senior years
  • Certificate of attainment
  • Assessed for employment & sent to rehabilitation centre
  • “Not suitable for open employment”
  • Sheltered workshop/business service BORING!!!!!!! (terrible pay too - worked 8-3 each day and got $35-40 per day)
  • Natural advocate/unionist
  • Hospital ancillary course/employment agency
  • After 47 interviews got a job at RPA Hospital
  • 2 roles & received “Employer of the month” award
  • Workplace problems – left after 10 years
  • Pleasure and pride with achievements in cricket – acceptance and respect
  • Joined CID in 2004 (best 7 yrs of life!)
  • Ambassador for “Don’t DIS my ABILITY” campaign since 2007
  • New job! (a lot of responsibility)
  • Better pay – competitive open employment rates
  • Anyone know someone (besides me) with an ID?

Myths (and Facts)

  • ID is not the same as mental illness. They are two different things
  • Relationships? Yes.
  • Drive a car? Some do, some don't.
  • Live alone? Some do, some don't.
  • Become parents? Yes.
  • Not eternally childlike!

“Do's and “Don’t”s

  • Do use warm greetings
  • Sloppy/fishy handshake are a “don’t”
  • Use normal rate of speech (don't talk very slowly)
  • Use normal volume (don't shout)
  • Let the person make their own choices! (Or liaise with advocate or support person)
    • Don't just pretend that he isn't in the room
  • Eg – Mike in hospital

Intellectual Disability in Medical Practice

What is an Intellectual Disability?

  • Below average intelligence
    • Measured as IQ
    • <70, ie at least 2 standard deviations below mean
  • PLUS deficits inadaptive behaviours
  • AND onset before the age of 18

Intelligence/intellectual ability

  • Refers to general capacity to engage in cognitive functions such as learning, reasoning, manipulating information, identifying patterns and relationships, problem solving, recall, planning etc
  • Is complex and multifaceted
  • Is assessed using one of several standardised tests for which the average population score (IQ) is 100

Adaptive Behaviour or Adaptive Skills

  • Refers to age-appropriate behaviours necessary for people to live independently and to function safely and appropriately in daily life
  • “Skills of daily living”
  • Is assessed using one of several standardised tests

What Are Adaptive Behaviours?

  • Conceptual skills: language and literacy; money, time, and number concepts; and self-direction.
  • Social skills: interpersonal skills, social responsibility, self- esteem, gullibility, naïveté, social problem solving, ability to follow rules or obey laws and to avoid being victimized.
  • Practical skills: personal care, housekeeping, occupational skills, healthcare, travel & transportation, schedules/routines, safety, use of money, use of the telephone.

American Association on Intellectual and Developmental Disabilities (AAIDD) http://www.aaidd.org/content_100.cfm?navID=21

Other Terminology

Don't use nasty words, or any of the following:

  • Intellectual Disability
  • Intellectual Handicap
  • Mental Retardation
  • Learning Disability (this is a different term that is specific to dyslexia for example)
  • Developmental Disability (encompasses some problems e.g. autism that aren't related to intellectual ability)
  • Intellectual AND Developmental Disability
  • A Person With an Intellectual Disability

Prevalence of ID

  • Difficult to ascertain exact numbers in Australian population
  • Population Prevalence of ID about 1.8%; range 0.4% –3.0% (AIHW, 2003)

http://www.aihw.gov.au/publications/index.cfm/title/9671

Classification

Mild:

  • Travel - possible with specific training
  • Planning and organising their lives
  • Managing money, personal care and hygiene
  • Important enduring relationships
  • Increased importance of visual aids in communication

Severe:

  • Continuous, intensive assistance
    • Communication, personal care, accessing services and facilities
    • Continuous supportive care
    • ....

Causes of intellectual disability

  • There are very many
  • There are very different stories for people with ID - may have started at conception or as late as 17 in a motor vehicle accident

Impact of intellectual disability

  • Communication, behaviour
  • Family, social
  • Health, mental health

This is all impacted on by how society views disabilities. We've gone from a very medical model through to a universal model.

Theories of disability

Copy diagram

  • It is an ambitious but a necessary aim to have a person-centred approach in medical practice

Communication

  • Many patients are unable to speak - people are able to communicate non-verbally
    • Obviously it is easier if he can speak with someone (and report symptoms), but if they can't he needs to manage that

Impact of ID

Behaviour

  • Higher rates of behavioural problems (both child and adult)
  • Relationship to communication difficulties
    • Behaviour as communication
      • Medical (e.g. pain affects behaviour)
      • Psychiatric (disorder causes behaviour change)
      • Instrumental (“learned” through reinforcement) (certain behaviours get me what I want e.g. tantrum to get a drink)
  • Behavioural phenotypes
  • “Challenging behaviour”

Family and social

  • Many people with ID have goals and want to gain their developmental stages. We have a person at the centre and we need to seek to encourage them to give maximum opportunities to engage.

Health

  • Lower life expectancy
    • Decreases with increasing disability
    • From 10 years, to 20 years lower for those with severe ID
  • Higher morbidity (due to many diseases)
  • Lower rate of detection and treatment

General health challenges

  • Dental disease (7x)
  • Vision impairment and eye disorders (7-20x)
  • Hearing impairment
  • Thyroid problems
  • Epilepsy
  • GERD
  • Osteoporosis
  • Hospitalisation (2x)
  • Serious injury (2x)
  • Mobility problems
  • Multiple chronic complex disorders
  • Polypharmacy
  • Lifestyle related
    • Overweight and obesity
    • Constipation
    • Reduced physical fitness

Health challenges in Down Syndrome

  • Visual impairment, cataracts
  • Hearing impairment
  • Hypothyroidism
  • Epilepsy
  • Congenital heart defects (40-50%)
  • Atlantoaxial instability
  • Skin disorders, alopecia, eczema
  • Depression
  • Alzheimer’s disease
  • Sleep apnoea
  • Increased susceptibility to infections
  • Coeliac disease
  • Blood dyscrasias
  • Childhood leukaemia

Health challenges in Tuberous sclerosis

  • Retinal tumours
  • Sleep problems
  • Epilepsy
  • Cerebral astrocytomas
  • Rhabdomyomas
    • Eye
    • Bone
    • Liver
  • Hypertension
  • Kidney and lung hamartomas
  • Polycystic kidneys
  • Dental abnormalities
  • Skin lesions

Health challenges in Fragile X syndrome

  • Visual impairment
  • Hearing impairment
    • Recurrent ear infections
  • Epilepsy
  • Aortic dilation, mitral valve prolapse
  • Connective tissue dysplasia
  • Scoliosis
  • Congenital hip dislocation
  • Hernias
  • Attention deficit/hyperactivity

Health challenges in Neurofibromatosis

  • Hearing impairment (auditory nerve gliomas)
  • Endocrine abnormalities
  • CNS problems
    • Dependent on tumour site
  • Skeletal abnormalities
    • Especially kyphoscoliosis
  • Various clinical phenomena dependent on neurofibroma site
    • Tumours susceptible to malignant change
    • Other varieties of tumour

Mental health

  • People with ID experience:
    • the full range of mental disorders seen in adults without ID
    • higher rates of mental disorder (~40% v ~20%)
    • increased prevalence of mental disorder with increasing disability
    • psychopathology that varies with level of disability

Prevalence: ID vs non-ID

Profile of mental disorders varies with severity of ID

  • Mild-moderate ID: full spectrum o fmental disorders
  • Moderate-severe ID: different symptom profile, discrete Sx difficult to identify
    • Behavioural analysis and 3rd party reports rather than self-reported Sx
    • Severe mental illness can sometimes be identified
    • 15-50% stereotyped behaviours
    • 10-20% self injurious behaviours

Things that affect mental health

  • Mildly-affected people (e.g. Michael) experience a common story of bullying, being treated a certain way, etc, but are otherwise quite functional.

ID and Health

  • People with ID experience higher prevalence of and increased vulnerability to both mental disorder and many other health conditions

YET

  • Detection and treatment are lower
    • Mental health – 10% accessed treatment in 10 years v 35% in 1 year
    • Physical health – 42% of conditions undiagnosed, and 51% not adequately managed

Why?

  • Less likely to complain/seek help
    • insight
    • communication
  • Reliant on third party report, third party may not recognise problem
  • Atypical presentation
  • Signs of health condition or mental disorder are confused with a feature of ID or a behavioural problem
  • No specialised services for people with ID
  • Doctors need skills and confidence in
    • communication
    • assessment
    • maintaining continuity of care
    • understanding intellectual disability

Approaches to diagnosis

  • Presentation(general health and mental health)
    • may be more complex or atypical – requiring careful enquiry
    • the importance of investigating behaviour
  • Adults with mild ID and/or reasonable verbal skills: similar presentation to adults without ID
  • Adults with moderate-severeID, ID & autism, or limited verbal skills: increased changes in behaviour, including disturbed or regressed behaviour

Presentation – ambiguities

Changes that seem to indicate a medical/mental disorder may have other causes, eg

  • medication side-effects, pain, or physical illness/disorder
  • bizarre behaviour in response to a stressor, or disorganised speech, giggling and silliness may be an idiosyncratic feature of the disability rather than signs of psychosis
  • Etc

Changes due to a medical/mental disorder may be incorrectly perceived as normal in the context of the ID, eg

  • manic grandiosity may be mundane, such as imitating a staff member
  • head banging due to an acute earache may be misattributed as attention-seeking or anger/other emotional expression
  • food refusal due to severe reflux might be inappropriately labelled as stubborn behaviour

Approaches to diagnosis 2

  • Principles of Dx same as for non-ID
    • however due to ambiguities extra care is required
  • Adapting communication
    • Rapport, respect and involving the individual
    • Seeking information from a variety of sources
  • Longer consultations may be necessary
    • Medicare schedules
  • Hierarchy of causes
    • Medical
    • Psychiatric
    • Behavioural

Approaches to Treatment

  • Principles of prescribing and Tx generally the same (applies to medical and mental disorders)

HOWEVER

  • Possible atypical response to medication
  • Higher risk of polypharmacy
  • May require active monitoring of side-effects
  • May require support to manage compliance
    • Involving carers
    • Simplifying instructions and interventions
    • Etc – depends on individual circumstance

Theories of disability

Historical changes and impacts

  • Benefits of deinstitutionalisation
    • Social inclusion
    • Enhanced opportunities
  • Other impacts of deinstitutionalisation
    • Historical separation of health and disability services
    • Erosion of expertise within health sector
    • Loss of educational and professional focus
  • Subsequentservicedevelopment
    • Enhanced behavioural support within ADHC
    • Limited development of health services and policy

Principles guiding approach to health services

  • UN Convention on the Rights of Persons with Disabilities
    • Adopted by the UN on 13 December 2006
    • Australia: signed 30 March 2007; ratified 17 July 2008
  • Equity of access to (mental) health care
  • Article 25:
    • the same range, quality & standard of free or affordable (mental) health care
    • (mental) health services needed specifically because of the disability
    • services to prevent secondary disabilities
    • services as close as possible to own community, including rural areas
    • (mental) health professionals who:
      • provide the same of quality (mental) health care, including on the basis of free and
      • raise awareness of human rights, dignity, autonomy and needs of persons with disabilities
      • provide training and promulgation of ethical standards for public and private (mental) health care
    • a system which:
      • prohibits discrimination in provision of insurance
      • prevents discriminatory denial of (mental) health care, services, foods/fluids

ID services and resources

  • The NSW Office of the Public Guardian
  • Ageing Disability & Homecare, Department of Family & Community Services NSW
    • For people with ID
      • Early intervention for children and young people
      • Learning new skills for work or leisure
      • Everyday living support, including therapy, case management and behaviour support o Somewhere to live
      • Advocacy and information services
    • For carers
      • Respite and support for carers
      • Training for parents of children with an intellectual disability
    • Help in managing challenging behaviour
      • Advocacy and information services
      • Support groups and networks.
  • NGOs
    • Eg House with No Steps
    • Syndrome specific services: eg Autism Spectrum Australia, Australasian Tuberous Sclerosis Society, Fragile X Syndrome Association of Australia, etc
    • Family Planning NSW – resources on sexual health and sexuality for people with ID
    • Intellectual Disability Rights Service – lawyers who work exclusively with those with ID
    • Abuse and Neglect hotline – to report suspected or actual instances of abuse or neglect
    • Advocacy & Consumer Services – NSW & National CID, PWD, MDAA

Conclusions

  • The implications of having an intellectual disability result from the complex interaction of social, family, interpersonal and intrapersonal factors and are shaped by the socio-cultural environment
  • People with intellectual disability experience significantly poorer health and mental-health relative to non-ID peers
    • higher morbidity and mortality
    • lower rates of detection and treatment
  • Providing appropriate medical care to a person with an intellectual disability means
    • adjusting communication and consultation time as required
    • being aware, open, sensitive and vigilant

Story of a woman with children who have lissencephaly

  • More about this disease: wikipedia:Lissencephaly
  • Please acknowledge these children as real people, and talk to them even though they might not be able to respond
    • This is not only important to the patient, but also their parents/family
  • In any society, justice can be measured by the amount of resources devoted to helping the underprivileged
    • Our society has an unhealthy focus on perfection and sometimes disregards those who do not fit traditional norms