Innovations and development: Lessons from around the world

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Innovations and development Lessons from around
the world

• Professor Sally Hartley
• University of East Anglia
• Norwich

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What can we learn from experiences around the
world, that might inform the way we provide
services and support for people with
communication disabilities, here in the UK?

• Needs
• Conceptualizations
• Taxonomy
• Methodologies
• Partnerships

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Majority of SLTS worldwide provide therapy to 20
of the worlds population
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and largely in the Developed World
Sel ,D. Wickenden,M. Hartley.S. Wirz,S. 2001
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Impairment analysis of 1049 children seeking
help from CBR programmes in Uganda
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Communication disability analysis of the same
1049 children
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Communication Disability Model
Communication Disability
Hartley, S. and Wirz,S. (2002) Development of a
Communication Disability Model Social Science
and Medicine. 54. 1543-1557
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The ICF-r An Interactionist model (adapted by
Bartlett et al 2006 from WHOs ICF model 2001)
Function Disability
Body functions structures Impairments
Activities Activity limitations
Participation Participation restrictions
Environmental factors Fixed Modifiable
Personal factors Fixed Modifiable
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• d Domains of Activity participation
• Learning applying knowledge
• General tasks demands
• Communication
• Mobility, 5. Self-care, 6. Domestic life
• Interpersonal interactions and relationships
• Major life areas. 7. Community, social civic
  life

Body Functions mental functions, sensory
functions, voice and speech functions. Etc. Body
structures structures of the nervous system,
eye, ear etc.
Health condition. (ICD 10) e.g. epilepsy,
cerebral palsy, stroke, cleft palate etc.
Health or Disease
Impairment
Activity Limitation
Participation Restriction
Environmental Factors
Personal Factors

• e. Domains of environmental factors
• Products Technology
• Natural environment human made changes to
  environment
• Support relationships
• Attitudes
• Services, systems and policies

Domains of personal factors Gender Race Age,
Other health conditions, Fitness, Lifestyle,
Habits, Upbringing, Coping strategies, Social
background, Education. Profession, Past and
current life events. Overall behaviour pattern ,
Individual psychology
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• Body Functions Structure
• b320 articulation function
• b16710 expression of spoken language
• b16700 reception of spoken language
• b330 fluency and rhythm of speech functions
• b140 attention functions

• Activities and Participation
• d140,d166 learning to read and reading
• d820 school education
• d880 engagement in play
• d920 recreation and leisure

• Modifiable and Fixed Environment
• e585 education and training services
• e553 special education and training services
• e310 immediate family
• e315 extended family
• e320 friends
• e425 individual attitudes
• e410 individual attitudes of family etc.
• e2151 population density
• e580 health services

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Using ICF to compare the assessment of
communication disorders in RCTs. Tengbin Xiong

• 24 RCTs were included (aphasia-15,stuttering- 4,
• voice -1, communication difficulty 3,
  catatonic mutism-1.)
• causes related to brain functioning/ injury
• 18 studies used 24 standardized outcome
• measures
• 11 of the trials used non-standardized OMA
• 13 studies - sample less than 30
• 11 studies - Therapeutic rehabilitation
• 11 studies - Drug related intervention
• 2 studies employed combined interventions.

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• Most of the items in assessments are linked to
  the Body Functions
• Most frequently assessed Body Functions are
• b799 neuro-musculoskeletal movement-related
  functions
• b330 Fluency and rhythm of speech functions
• Patients baseline characteristics mostly
  belonged to the personal factors
• d570 Looking after one's health was the only
  domain in the baseline assessment which belonged
  to Activities and Participation.

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Other international tools

• UN convention on the Rights of Disabled People
  (UN 2007)
• CBR Joint Position Statement (WHO/ILO/UNESCO
  2004)
• UN Standard Rules on the equalization of
  opportunity for persons with disabilities (UN
  1994)
• Salamanca Statement (UNESCO 1994)

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Communication analysis. Albert Mehrabian Los
Angeles 1960s
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Visual Impairment blindness in children
1.2 Supportive attitude nurturing environment
provided by family
2.1 Awareness and realisation of blindness
e3 Support relationship
2.2 Feelings of blind children
Personal factor psychological status
1.3 Abuse faced by children who are blind
4.1, 2, 3 What not to call and local terms
1.1 Negative attitude of the community
e4 Attitudes
d7 Interpersonal interaction and relationship
2.3 Social impact of blindness on children
6.1, 2, 3 Attitude towards wearing spectacle
3.4 School teachers knowledge on causes
d9 Community, social and civic life
1.4 Exclusion faced by children who are blind
2.5 Psychological impact on parents
3.2 Parents knowledge about the cause
2.4 Personhood, self-identity and equal rights
3.3 CBR workers knowledge on causes
10.1, 2, 3,4 CBR
d4 Mobility
5.1, 2, 3 Myths, beliefs and information on
treatment
3.1 Blind childrens knowledge about the cause
d8 Major life areas
d1 learning applying knowledge
e1 Product and technology
7.1, 2, 3, 4, 5, 6, 7 Health care seeking
behaviour for childrens eye health and vision
9.1, 2, 3,4,5,6 Education for blind children
e5 Services, systems and policies
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Action against Disability faced by children who
are blind in Bangladesh

• Providing Medical/individual care
• Early detection and treatment of eye diseases in
  children
• Support positive psycho-social development of
  blind children

1.2 Supportive attitude nurturing environment
provided by family
2.1 Awareness and realisation of blindness
e3 Support relationship
Visual Impairment Blindness in children
2.2 Feeling of blind children
Personal factor psychological status
1.3 Abuse faced by children who are blind
4.1, 2, 3 What not to call and local terms
1.1 Negative attitude of the community
e4 Attitudes

• Supporting the Activity Participation
• Training of children in ADL, OM, Braille and
  other essential trainings.
• Support personhood and role models
• Ensure social participation, inclusive festivals,
  events
• Encourage sighted children to play with blind
  children

• Changing the Attitude of able-bodied persons
• Advocacy, information and communication
  strategies and programmes
• Targeting specific audiences
• Developing specific messages
• Challenging beliefs
• Supporting parents
• Encouraging positive behaviour
• Ensuring Rights

d7 Interpersonal interaction and relationship
2.3 Social impact of blindness on children
6.1, 2, 3 Attitude towards wearing spectacle
3.4 School teachers knowledge on causes
d9 Community, social and civic life
1.4 Exclusion faced by children who are blind
2.5 Psychological impact on parents
3.2 Parents knowledge about the cause
2.4 Personhood, self-identity and equal rights
3.3 CBR workers knowledge on causes
10.1, 2, 3,4 CBR
d4 Mobility

• Developing systems and policies
• Developing CBR
• Ensuring inclusive education
• Accessible eye care for children
• Legislation and policies to support the rights of
  children who are blind

5.1, 2, 3 Myths, beliefs and information on
treatment
3.1 Blind childrens knowledge about the cause
d8 Major life areas
d1 learning applying knowledge
e1 Product and technology
7.1, 2, 3, 4, 5, 6, 7 Health care seeking
behaviour for childrens eye health and vision
9.1, 2, 3,4,5,6 Education for blind children
e5 Services, systems and policies
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Psycho-social aspects relevant to brain disorders
in Europe An EU research bid
Memory Loss
Alacos Cieza- Ludwig-Maximilians University
(with partners from Germany, Poland, Finland,
Spain, Italy, Switzerland, UK and Belgium).
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Communication disorder/social communication
disorder
Elevate one conditionover another
Aphasia the hidden disability
Clinical practice/expertise
Speech and language and communication
Treatment
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Unintended outcomes
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CARD

• Action-based research
• Develop partnerships -disabled people, service
  providers and researchers
• Develop research capacity
• Incorporate new knowledge into on going CBR,
  health and education courses.
• Disseminate research findings.

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Information Sharing in CBR

• Joan visiting CBR programmes in Mbale
• Joan interviewing at UNAB

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Innovative methodologies
Kuipers,P. Wirz,S. Hartley,S. (2008) Systematic
synthesis of community based rehabilitation (CBR)
project evaluation reports for evidence based
policy a proof of concept study. BMC Health and
Human Rights 83 1-17
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Message for practitioners
Basic Language Scheme (BLS)
Spoken Language Assessment Profile (SLAP)
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The World Report on disabilityand rehabilitation

• Link/partnerships between disability
• studies and rehabilitation
• is weak
• Lack of generalists to support the specialists

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Background for Women's Group project in Kilifi
Kenya.

• 10,218 (6-9 yrs) children screened for childhood
  disabilities using Ten Questions Questionnaire
  (TQ)
• 6.3 had moderate to severe impairments
• 3.3 (334 children ) had
• communication disability.
• These children made up
• 52.5 of this NI
• population.

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Womens Project Structure
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• Do you know children who cant communicate well?
• What problems do you think these children and
  their families face?
• What can you do to help?
• What can we do to help you achieve this?

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Changing peoples attitudes
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Learning local sign language
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Playing games
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Making aids
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Comparison of the difference scores between
intervention and non-intervention and pre and
post intervention, according to functional
limitations.
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Comparison of baseline to follow up CDP data by
functional limitation groups
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Decide if communication is our focus or just
speech and language.
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Map of the world
UK is part of the world. Build on International
work
Conceptualize communication and disability
clearly. Know where and how we can respond to
this

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• Nothing about us without us

• They are the ones who know where the shoes
  pinch the most
• Malawian proverb

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To lead or not to lead?
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Partnerships are essential

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Thank you!

• Juliet Goldbart (Manchester)
• Alana Officer (Geneva, WHO)
• Ann van der Gaag (Strathclyde)
• Stephanie Martin (London City)
• Kate Seelman (Pittsburg USA)
• Nina Soleff (Milton Keynes PCT)
• Karen Bunning (UEA)
• Jan McAllister (UEA)
• Simon Horton (UEA)
• Jennie Vitkovitch (UEA)
• Angie Wade (UCL)