DISABILITY AND DEVELOPMENT RESEARCH

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DISABILITY AND DEVELOPMENT RESEARCH

• RESEARCH SYMPOSIUM
• RESEARCH PRIORITIES IN DISABILITY AND
  DEVELOPMENT
• AMSTERDAM, WORLD DISABILITY DAY, 2008
• PROFESSOR ARNE H. EIDE
• SINTEF HEALTH RESEARCH

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WHY DISABILITY DEVELOPMENT RESEARCH?

• A society which is good for disabled people is a
  better
• society for all (Kauppinen, Copenhagen
  Summit)
• The likelihood of adequately addressing a
  problem when there is inadequate information
  about the problem is small. Despite the emergence
  of international standards to promote the
  inclusion of people with disabilities in
  development, procalmations and in-country
  legislations and policies, integrating people
  with disabilities in mainstream development
  remains a major challenge for most governments in
  the region (Asia Pacific). Disabled people are
  disproportionally undereducated, untrained,
  unemployed and underemployed and generally poor
• (Ilagan V 2004)

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TOPICS

• STATUS WHAT DO WE KNOW?
• RESEARCH GAPS
• DISABILITY STATISTICS
• DISABILITY AND POVERTY
• SERVICE DELIVERY
• DISABILITY AS SYSTEMS PROBLE FOR EVALUATING
  HEALTH, DEVELOPMENT AND EQUITY

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ICF (WHO 2001) AND DISABILITY STATISTICS

• The model

HEALTH CONDITION
BODY ACTIVITY
PARTICIPATION FUNCTIONS AND STRUCTURE
PERSONAL FACTORS
ENVIRONMENTAL FACTORS
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RECENT INITIATIVES

• UNITED NATIONS ECONOMIC AND SOCIAL COMISSION FOR
  ASIA AND THE PACIFIC (ESCAP) (2006)
• UNITED NATIONS STATISTICS DIVISION
• DISTAT
• INTERAMERICAN DEVELOPMENT BANK (IDB)
• Improving Disability Data in the Andean
  Region and the Caribbean
• LIVING CONDITIONS SOUTHERN AFRICA
• WASHINGTON CITY GROUP
• Global co-ordination

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ESCAP (2006) macro approach

• A profile of 28 countries in Asia and the
  Pacific
• Human Development Report Index
• Demography prevalence, disability definitions,
  employment rate, access to education
• Institutional framework national co-ordnination
  mechanism
• Legislative and policy framework
• National efforts to promote an inclusive society
• Committment to regional and international policy
  framework
• Has Government signed the ESCAP Proclamation on
  the Full Participation and Equality of People
  with Disabilities
• Has Government ratified the ILO Vocational
  Rehabilitation Convention
• Financial committment
• Proportion of national disability (social)
  spending to GDP
• Annual budget allocation to co-ordinating
  mechanism

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ESCAP (2006)
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DISTAT

• UNITED NATIONS DISABILITY STATISTICS DATABASE
• (1990--)
• INFORMATION DRAWN FROM NATIONAL STATISTICAL
  OFFICES
• MANUAL ON DISABILITY STATISTICS

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LIVING CONDITIONS AMONG INDIVIDUALS WITH
DISABILITIES IN SOUTHERN AFRICA
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CONTENT

• LIVING CONDITIONS
• HEALTH
• INCOME
• EDUCATION
• INFORMATION
• HOUSING STANDARD
• ACTIVITES PARTICIPATION
• ICF MATRIX
• DISABILITY
• SERVICES
• ASSISTIVE TECHNOLOGY
• EDUCATION
• HEALTH IMPAIRMENTS
• ROLE IN HOUSEHOLD
• PSYCHOSOCIAL FACTORS
• ..

• Reports on these studies
• www.safod.org
• www.sintef.no

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WASHINGTON CITY GROUP

• WASHINGTON GROUP ON DISABILITY STATISTICS
• MANDATE
• That the International Classification of
  Functioning, Disability and Health (ICF) be used
  as the framework for measurement of disability in
  future work.
• That principles and standard forms for global
  indicators to be used in censuses be developed
• That principles for measuring the participation
  and environment components of the ICF be
  developed
• That emphasis be placed on improving the
  comparability of disability data cross-nationally
  while being sensitive to the cultural and
  resource differences encountered among different
  nations.

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WASHINGTON CITY GROUP

• That attention be focused on issues associated
  with measuring disability among special
  populations such as children, elderly,
  institutionalized populations, and others
• That methodological problems including issues of
  self vs. proxy respondents, multipoint scale cut
  points, and negative terminology, be examined
• That additional work be done on survey
  instruments for health surveys and survey
  supplements to be used in surveys that do not
  focus primarily on disability and
• That stakeholder and data users be included in
  these activities and that exchange of information
  and establishment of guidelines for the use of
  data and development of working relationships and
  networks among countries to further cooperation
  on disability data topics be stressed.

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WASHINGTON CITY GROUP

• FIRST PRIORITIES
• To guide the development of a small set(s) of
  general disability measures, suitable for use in
  censuses, sample based national surveys, or other
  statistical formats, which will provide basic
  necessary information on disability throughout
  the world.
• To Recommend one or more extended sets of survey
  items to measure disability or principles for
  their design, to be used as components of
  population surveys or as supplements to specialty
  surveys.  These extended sets of survey items
  will be related to the general measures.
• Measures identified in the above objectives will
  be culturally comparable to the extent possible. 
  The ICF model, a useful framework to assist in
  the development of these measures, will be
  utilized in developing the measures.
• To address the methodological issues associated
  with the measurement of disability considered
  most pressing by the City Group participants.

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Research gaps disability statistics

• THERE IS A LACK OF DATA
• EXISTING DATA LARGELY OF LOW QUALITY
• WEAK THEORETICAL BASIS FOR STATISTICS
• WEAK BASIS FOR COMPARATIVE RESEARCH AND FOR
  APPLIED RESEARCH
• Disability is taboo in development, if measured
  by the quantity of resources committed, or by the
  quality of analysis and information
  (Harris-White)

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Definition - Poverty

• While poverty was previously largely narrowed
  down to economic measures (one dollar a day)
• more recent approaches to poverty underline
  its multidimensionality
• Poverty is now seen as the inability to achieve
  certain standards" - poor people "often lack
  adequate food, shelter, education, and health
  care" - and "they are poorly served by
  institutions of the state and society".
  (Wolfensohn Bourguignon 2004).

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Main causes of poverty

• World Development Report 2000/2001 Attacking
  Poverty
• lists the following main causes of poverty
• Lack of income and assets to attain basic
  necessities food, shelter, clothing and
  acceptable levels of health and education
  (opportunity)
• Sense of voicelessness and powerlessness in the
  situations of state and society (empowerment)
• Vulnerability to adverse shocks, linked to and
  inability to cope with them (security)

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THE DISABILITY/POVERTY CYCLE (Yeo 2003)

• Excluded
  from
• 
  formal/informal education
• 
  and employment
  Fewer skills
• 
  Limited social contacts
• 
  Low expectations from
  Income generating
• Impairment Discrimination community
  and self Low self esteem
  opportunities
• Disability
  Excluded from political/
  further reduced
• 
  legal processes
• 
  Excluded from basic
  Lack of ability to
• 
  health care
  assert rights
• 
  Lowest priority for
• 
  any limited resources
• 
  Lack of support for high
  Poor health
• 
  costs directly associated
  Income
  poverty
• 
  with impairment
• 
  
• Further exclusion
  Chronic poverty

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THE POVERTY/DISABILITY CYCLE (Yeo 2003)

• Limited access to
• 
  education
• 
  and employment
  Forced to accept
• 
  
  hazardous working
• 
  Limited access to
  conditions Higher risk of
• Chronic Exclusion
  land and shelter
  illness, accident
• Poverty
  
  Unhygienic, and
  impairment
• 
  Poor sanitation
  owercrowded
• 
  
  living conditions
• 
  Excluded from political/
  
• 
  legal processes
• 
  
  Lack of ability to
• 
  Limited access to health
  assert rights
• 
  care
• 
  
• Insufficient or
  Malnutrition, poor
• 
  unhealthy food
  health and physically

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Social exclusion

• How then is social inclusion expressed? A major
  concern is that of the absence of research and
  data. There seems to be no internationally
  comparable information on the incidence,
  distribution and trends of disability. In
  addition,
• there is a lack of statistical information
  about the poverty situation of people with
  disabilities (eg. Absence of poverty represented
  disability indicators in censuses and surveys as
  well as lack of analysis of this collected data).
  This lack of information is in itself a symptom
  of exclusion or marginalisation of disabled
  people. (Beverly Beckles 2004)

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STRUCTURAL VIOLENCE

• Economic, political and ideological circumstances
  produces poverty and exclusion
• Poverty as an attack on human rights
• Failure of governments to secure health care and
  proper nutrition to vulnerable groups
• Perception of disability as needs based (vs.
  human rights)

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Poverty within poverty

• The uniqueness of the disability perspective is
  that it has to do with poverty within poverty. In
  low-income countries and areas people with
  disabilities are among the most vulnerable. They
  are often the first to die when sanitary and food
  conditions become critical. They do not get to
  the hospital because transportation cannot be
  paid for. They are the last to get jobs when
  employment is scarce. They are often the last in
  a group of siblings to be sent to school if the
  parents can only afford shoes and school uniforms
  for a limited number of their many children
• (Ingstad Eide 2009)

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POVERTY AND DISABILITY

• There is a strong link between disability and
  poverty
• The research base for this relationship is
  however weak
• Due to lack of data we do not know much about
• Mechanisms behind the evil circle of disability
  and poverty
• How the relationship is manifested in different
  contexts and cultures
• However a number of qualitative studies have
  contributed to the knowledge base (Ingstad
  Grut Yemen, Kenya, South Africa. Muderedzi
  Zimbabwe. Braathen Malawi)

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POVERTY AND DISABILITY

• Political framework for breaking the disability
  poverty circle largely in place Standard Rules,
  International Convention, WHO Resolution, EU
  Resolution, National Policies, MDGs
• Current crucial issue knowledge based
  implementation and service delivery
• We do for instance not know
• Whether and how the reduction in number of poor
  people in emerging economies has benefited
  individuals with disabilities
• Whether and how the economic stagnation in Africa
  has benefited individuals with disabilities
• Whether chosen strategies for community based
  rehabilitation and service delivery has the
  wanted effects

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Research on poverty and disability

• Poverty focused research looks at factors that
  directly inhibits poor people with a disability,
  and produce or reproduce conditions of
  deprivation and inequality. We are today far from
  the ideal goal of seeing disability as a
  cross-cutting theme in all poverty-reduction work
  and research. Roughly, we may say that what
  little research has been done so far on the link
  between poverty and disability has been done
  from two different perspectives
• A macro perspective manly in the form of
  surveys of living conditions
• A grass root perspective giving people a voice
  and bringing forth experience near narratives.

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DISABILITY AND REHABILITATION SERVICES

• Service delivery is particularly problematic in
  low-income contexts
• Estimate 600 million people in poor countries
  have special needs in terms of health care,
  education, rehabilitation, approproate assistive
  devices and social support
• 20 million people who need a wheelchair do not
  have one
• The large majority do not get the services they
  need to function optimally and to participate
  fully in society it is an issue of quantity as
  well as quality
• Lack of services and low quality of services is
  an important element in the poverty within
  poverty circle

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Service gap Southern Africa

• Types of services needed ( of disabled) and
  received ( of those who needed)
• __________________________________________________
  _________________________
• Namibia Zimbabwe Malawi
  Zambia
• Need/Received Need/Received
  Need/Received Need/Received
• Services
• __________________________________________________
  _________________________
• Health services 91/73 94/92
  83/61 77/80
• AT/services 67/17 57/37
  65/18 57/18
• Voc. Training 47/5
  41/23 45/6 35/8
• Medical rehabilitation
  65/26 68/55 60/24
  63/37
• Welfare services
  80/23 76/24 69/5
  63/8
• Educational services
  58/27 43/51 44/20
  47/18
• Counselling (disabled) 65/15
  52/41 53/21
  51/14

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Service quality indicator

• Age of onset of disability/impairment
• __________________________________________________
  _____
• Age of onset Namibia Zimbabwe
  Malawi Zambia
• __________________________________________________
  ______
• From Birth 31 20 23 30
• 1-10 21 24 36 21,4
• 11-20 12 9 11 43,1
• 21-60 32 32 23
• 61 4 15 7
• __________________________________________________
  ________
• Acquired disability between birth and age of 10
  years
• Acquired disability as children or young
  adults (lt 20 years)

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Lack of Appropriate Wheelchair Design and
Services for Children
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Wrong fit secondary
conditions
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Research gaps service delivery

• Baseline data on the situation demand, supply,
  quality and effect on welfare
• Impact assesments quality aspects
• Service delivery what are optimal models for
  weak infra structures?
• AT adaptation to low-income contexts
• CBR need for research to be integrated into the
  concept to enable impact assessment

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EquitAble new research initiative

• Enabling Universal and Equitable Access to
  Healthcare for Vulnerable People in Resource poor
  Settings in Africa
• Funded by EU 7FP (2009 2013)
• Aims at
• Providing policy, qualitative and quantitative
  evidence of health service provision, and
  barriers to it, for persons with disabilities in
  four countries, across different regions, groups
  and contaxts
• Interface with ongoing research on how to get
  evidence-into-action in policy and practice
• Detail how the provision of services to persons
  with disabilities can be used as a probe to
  evaluate broader health system performance
• Two underlying drivers
• Health services cannot hope to be equitable
  unless they are equally accessible to all
• Assessing the health service experience of
  persons with disabilities may be a good way of
  probing the effectiveness of the overall public
  health system

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The EquitAble Access Model

Context And Systems Variables
Equitable Access To Healthcare
Activity Limitations
Personal And Community Variables
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Health systems probe

• A systems probe assesses a particular aspect of
  the system
• Not assumed that such probes offer anything like
  a comprehensive account, but rather that their
  results are simply more systems dependent than
  many other health outcomes
• Such probes are likely to be most informative if
  they incorporate a broad sweep of health services
  related activities, from maternal health and
  child care through to nutrition, rehabilitation
  and continuing support

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DISABILITY AS SYSTEMS PROBE FOR EVALUATING
HEALTH, DEVELOPMENT AND EQUITY

• Health services cannot hope to be equitable
  unless they are equally accessible to all
• Assessing the health service experience of
  persons with disabilities may be a good way of
  probing the effectiveness of the overall public
  health system
• The incidence of disability is related to a
  number of system issues
• Maternal Child Care
• Nutritional Status
• Immunization coverage
• Communicable diseases

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Additional systems aspects of disability as a
health service probe

• Service utilisation The use which persons with
  disabilities make of health services is an
  indicator of the services overall accessibility
• Chronic Disease Burden Disabled people live with
  many chronic conditions that require on-going
  health professional input
• Rehabilitation and Enabling Technologies Some
  disabled people are in on-going contact with
  rehabilitation services that provide and maintain
  enabling technologies that enhance their quality
  of life
• Interacting Vulnerability Factors Disability
  interacts with other factors, such as ethnicity
  and gender, that may marginalise people and
  affect access to healthcare
• Inter-sector Communication The quality of life
  of persons with disability cannot be maximised by
  health services alone but require efficient
  inter-sector communication and planning

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