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DISABILITY AND DEVELOPMENT RESEARCH

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Title: DISABILITY AND DEVELOPMENT RESEARCH


1
DISABILITY AND DEVELOPMENT RESEARCH
  • RESEARCH SYMPOSIUM
  • RESEARCH PRIORITIES IN DISABILITY AND
    DEVELOPMENT
  • AMSTERDAM, WORLD DISABILITY DAY, 2008
  • PROFESSOR ARNE H. EIDE
  • SINTEF HEALTH RESEARCH

2
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)

3
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

4
ICF (WHO 2001) AND DISABILITY STATISTICS
  • The model

HEALTH CONDITION
BODY ACTIVITY
PARTICIPATION FUNCTIONS AND STRUCTURE
PERSONAL FACTORS
ENVIRONMENTAL FACTORS
5
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

6
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

7
ESCAP (2006)
8
DISTAT
  • UNITED NATIONS DISABILITY STATISTICS DATABASE
  • (1990--)
  • INFORMATION DRAWN FROM NATIONAL STATISTICAL
    OFFICES
  • MANUAL ON DISABILITY STATISTICS

9
LIVING CONDITIONS AMONG INDIVIDUALS WITH
DISABILITIES IN SOUTHERN AFRICA
10
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

11
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.

12
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.

13
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.

14
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)

15
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).

16
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)

17
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

18
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

19
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)

20
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)

21
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)

22
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)

23
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

24
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.

25
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

26
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

27
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)

28
Lack of Appropriate Wheelchair Design and
Services for Children
29
Wrong fit secondary
conditions
30
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

31
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

32
The EquitAble Access Model

Context And Systems Variables
Equitable Access To Healthcare
Activity Limitations
Personal And Community Variables
33
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

34
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

35
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

36
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