Disability to the
Rescue?!
Strengthening Human Rights and Health Systems
in Africa.
malcolm.maclachlan@tcd.ie
Centre for Global Health & School of Psychology, Trinity College Dublin
3rd March 2011, University College London
1. Policy – UNCRPD
– EquiFrame
2. Health – MDGs
– APODD
3. Bamako Call
- Disability as a Probe
4. New Guidelines for CBR
– HRH Implications
5. Global Health Research Content/Context/Process
6. Making Aid Work
The Aid Triangle
CENTRE FOR GLOBAL HEALTH
We specialise in
multi-country
comparative
interdisciplinary research
seeking to strengthen health systems &
ensure equitable access, for all.
http://global-health.tcd.ie
Centre for Global Health
addressing two basic Issues
• 1. Who provides health care?
– Coverage + Performance
• 2. Who receives health care?
– Access + Equity
• Both related to inclusion
• Don’t mention the …..
Policy – UNCRPD – EquiFrame
• UNCRPD
– Now international law
– Obligations in International Aid
– UDHR – indivisible
• Provides a legal and moral context for
rights.
– Aspiration
– Contextual challenge
• Disability is not a ‘health problem’
– but health is a universal right!
EquitAble
EquitAble:
Enabling Universal and Equitable Access to Healthcare for
Vulnerable People in Resource Poor Settings in Africa
EU FP7 4 year project
Partners
Afhad University for Women, Sudan
• University of Stellenbosch, South Africa
• University of Malawi
• University of Namibia
• Secretariat of the African Decade for Persons with Disabilities
• SINTEF Health Research, Norway
• Centre for Global Health, Trinity College Dublin
EquitAble
• Aim
• To delineate the interplay between
disability and other factors that
marginalize and exclude people from
mainstream services and society.
• Policy: 70+ using EquiFrame
• Ethnographic: 16 sites
• Household Survey: 8000
EquiFrame
Policy
=
Box
Tool
• Health policy analysis is a critical process used to
explain why certain health issues receive more political
attention than others, as well as identifying the frequently
unintentional consequences of policy decisions, and the
obstacles that are encountered during policy
implementation (Gilson et al., 2008).
• EquiFrame = policy on the books
• NOT process of policy development or implementation
• The purpose of EquiFrame is to outline an
analytical framework for assessing the
degree to which social inclusion and
human rights feature in policy and policyrelated documents.
• It is often supposed that we have good policies, if only we could
implement them. And it is the implementation, rather than the
content, that much contemporary policy analysis addresses.
• Yet if the policies are not so good – if they are better for some than
for others – their implementation may unwittingly exacerbate
inequity and stimulate social exclusion.
• Polices should be written for all, but they should also be sensitive to
different types and different contexts of need:
– Thomas Jefferson
“There is nothing more unequal, than the equal treatment of unequal people”.
•
•
Theoretical identification of 37 Concepts
The Draft Framework was presented at Consultation Country Workshops
–
•
•
•
•
Feedback was incorporated into a revised Framework following further discussion
and removal of some overlapping terms and categories. To produce 21 Concepts
The Framework was then used to assess over 70 health policies, country, regional
and international.
Results presented at Feedback Workshops in countries, and learning incorporated
into revised Framework
Framework used at Practice Workshop for MOH in Malawi, to revise the Malawian
National Health Policy (Munthali et al. 2010)
–
•
Sudan, Malawi, Namibia and South Africa – 100+ participants, all sectors
novice users of the Framework gave feedback suggesting, for instance, simpler labels for
Core Concepts and simpler definitions of those concepts, to enhance user-friendliness.
And, feedback from various presentations where the ethos, approach or results have
been outlined
–
–
–
MacLachlan et al, 2008, at the Global Ministerial Forum on Research for Health, Bamako,
Mali;
Dube et al., 2010, at the African Union Social Welfare Ministers Annual Meeting, Khartoum,
Sudan;
Mannan et al., 2010, at the Health System Strengthening Conference, Montreax,
Switzerland.
• The manual was developed as part of a Work Package led by Ahfad
University for Women, within a larger EU FP7 funded project led by
the Centre for Global Health at Trinity College Dublin, with a
consortium of international partners (see www.equitableproject.org)
• Although we are not able to identify an ideal existing instrument, we
drew on several existing approaches in the area:
– core concepts of disability policy as developed by Turnbull and colleagues
(Reichard, Sacco, & Turnbull, 2004; and Stowe and Turnbull 2001);
– the right to the highest attainable standard of health - and in particular the need
to address health inequalities (Braveman, 2006; Oliver, Healey, & Le Grand,
2002)
– current thinking in health policy analysis more broadly (Gilson, Buse, Murray, &
Dickinson, 2008; Russell & Gilson, 2006).
21 Core Concepts of Human Rights
•
•
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1.
2.
3.
4.
Non-discrimination
•
Individualised Services •
Entitlement
•
Capability Based
•
Services
•
5. Participation
•
6. Coordination of Services •
7. Protection from Harm
•
8. Liberty
•
9. Autonomy
•
10. Privacy
11. Integration
12. Contribution
13. Family Resource
14. Family Support
15. Cultural Responsiveness
16. Accountability
17. Prevention
18. Capacity Building
19. Access
20. Quality
21. Efficiency
12 Vulnerable Groups
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Limited Resources
Increased Relative Risk For Morbidity
Mother Child Mortality
Women Headed Household
Children (With Special Needs)
Aged
Youth
Ethnic Minorities
Displaced Populations
Living Away from Services
Suffering from Chronic Illness
People with disabilities
4 EquiFrame Summary Indices
•
•
•
•
•
•
•
•
Core Concept Coverage: A policy was examined with respect to the
number of Core Concepts mentioned out of the 21 Core Concepts
identified; and this ratio was expressed as a rounded up percentage. In
addition, the actual terminologies used to explain the Core Concepts within
each document were extracted to allow for future qualitative analysis and
cross-checking between raters.
Vulnerable Group Coverage: A policy was examined with respect to the
number of Vulnerable Groups mentioned out of the 12 Vulnerable Groups
identified: and this ratio was expressed as a rounded up percentage. In
addition, the actual terminologies used to describe the Vulnerable Groups
were extracted to allow for qualitative analysis and cross-checking between
raters.
Core Concept Quality: A policy was examined with respect to the number
of Core Concepts within it that were rated as 3 or 4; that is, as either stating
a specific policy action or intension to monitor that action. When several
references to a CC were found to be present, the top quality score received
was recorded as the final quality scoring for the respective CC.
Each document was given an Overall Summary Ranking in terms of it
being of Low, Moderate or High standing according to the following criteria:
(i) High = if the policy achieved ≥50% on all of the three scores above.
(ii) Moderate = if the policy achieved ≥50% on two of the three scores.
(iii) Low = if the policy achieved <50% on two or three of the three scores.
EquiFrame:
A Framework for analysing equity in health policies
•
•
•
•
•
VG% CC%
Quality* Rating
National HIV Policy of Malawi
69% 81%
62
High
Policy on Quality in Health Care for SA
33% 14%
0
Low
•
* either stating a specific policy action or intension to monitor that action.
The relative frequency of mention of different vulnerable groups in health polices across four countries
(expressed as a percentage)
Chronic Illness
Disabled
Living Away from Services
Displaced
Ethnic Minorities
Namibia
Youth
Sudan
Aged
South Africa
Children with Special Needs
Malawi
Maternal and Child Mortality
Increased Risk for Relative
Morbidity
Women Headed Household
Limited Resources
0%
50%
100%
• Mannan , Amin, MacLachlan & the EquitAble
Consortium (2010)
• EquiFrame: A tool for evaluating and
promoting the inclusion of vulnerable groups
and human rights in policy documents.
Dublin: Global Health Press.
Soon available, freely downloadable
http://global-health.tcd.ie
Health – MDGs – APODD
A-PODD
African Policy on Disability & Development
African Policy on Disability and
Development – A-PODD
WWW.A-PODD.org
• Sierra Leone, Uganda, Malawi, Ethiopia
• Stellenbosch University & Africa Decade
• Advocacy
Millennium Development Goals
The Millennium Development Goals
(MDGs) are worldwide targets for
attaining poverty reduction.
Failure of structural adjustment
programmes led to the formation of
PRSPs.
What are PRSPs?

Operational frameworks for achieving the MDGs at a
country level.

Increasingly the most important policy instrument for
development in Africa and other low in-come nations.

Both a process or a mechanism for civil society (e.g.
DPO´s) to participate in policy development.

An instrument to align or harmonize donor activities
and assistance.

A tool for accountability.
What are PRSPs?
PRSPs:
setting a country’s basic development values,
objectives, strategies, and operational rules of the
game about which there is a societal consensus.
Source: (Rosa Alonso I Terme,WBI, 2002)
Fundamental Principles of a
PRSP
Data Collection Methods
Key
Informant
Interviews
(12)
People with
firsthand
knowledge
on the PRSP
process
Focus
Group
Discussion
(2- with a
total of 19)
Attitudes
towards
disability
mainstreami
ng and
inclusion
Critical
Incident
Technique
(6)
Nominal
Group
Technique
(9)
Behaviours
that
facilitate or
hinder
disability
inclusion
Prioritising
Important
ideas for
disability
inclusion
Force
Field
Analysis
(30)
Facilitators
or inhibitors
of important
ideas on
disability
inclusion
Feedback
Workshop
(45)
Sharing
research
findings and
getting
feedback and
comments
• Evidential factors
• Non-evidential factors
• Organisational learning
– vertical and horizontal
• One Voice
•
•
•
•
•
One Voice
Are you the People's Front of Judea?
Fuck Off!!
We’re the Judean People's Front!
. Bamako Call - Disability as a Probe
• MacLachlan, Mannan & McAuliffe (2011) Open Medicine
Disability as a systems probe for evaluating equity in health.
The Bamako Call
•
•
•
•
•
“Inter- Land”
Inter-sectoral
Inter-ministerial
Inter-disciplinary
Inter-sector Communication & CBR:
– The quality of life of persons with disability
cannot be maximised by health services alone
but require efficient inter-sector
communication and planning.
• The idea of a systems ‘probe’ is that
while it assesses a particular aspect of
the system, that aspect is in fact
dependent on may other factors within
the system.
A good probe?
• the results are more ‘systems dependent’
than many other health outcomes.
• most informative if they incorporate a
broad range of health services related
activities.
• By measuring how well the health
needs of people with disabilities are
being addressed, we can get a good
idea of how well the overall system is
functioning.
Some aspects of health service provision that
are particularly salient to persons with disabilities.
• Maternal & Child Care: The incidence of
disability is related to maternal and child care.
• Nutritional Status: The incidence of disability
is related to nutritional status
• Immunization: The incidence of disability is
related to immunization levels in the
population plus low immunization rates
among persons with disabilities is a particular
concern.
• Communicable Diseases: The incidence of
communicable diseases, such as HIV,
malaria and TB, are as high, if not higher, in
people with disabilities.
• Chronic Disease Burden: Disabled people live
with many chronic conditions that require ongoing health professional input
• Rehabilitation and Enabling Technologies:
Some people with disabilities are in on-going
contact with rehabilitation services that provide
and maintain enabling technologies that
enhance people’s 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.
• Service Utilisation: The use which
persons with disabilities make of health
services is an indicator of the services
overall accessibility
New Guidelines for CBR– HRH Implications
CBR and empowerment
GOAL: HUMAN RIGHTS – SOCIO-ECONOMIC DEVELOPMENT – POVERTY ALLEVIATION
COMMUNITY BASED
REHABILITATION
(CBR)
HEALTH
EDUCATION
LIVELIHOODS
SOCIAL
Promotive
Early
Childhood
Skills
Development
Personal
assistance
Preventive
Primary
Self
Employment
Relationship
s & family life
Advocacy
and
communicati
on
Community
mobilization
Medical care
Secondary
and Higher
Wage
Employment
Culture and
Arts
Political
participation
Rehabilitative
Non-formal
Financial
Services
Assistive
Devices
Lifelong
learning
Social
Protection
Sports and
leisure
leisure
Justice
EMPOWERMENT
Self help
groups
Disabled
people’s
organization
s
CBR Matrix and Environment
EMPOWERMENT
ENVIRONMENT
ENVIRONMENT
COMMUNICATIO
N
SOCIAL
MOBILIZATION
PHYSICAL
ENVIRONMENT
INFORMATION &
COMMUNICATION
POLITICAL
PARTICIPATION
REGULATIONS &
SYSTEMS
SELF-HELP
GROUPS
DISABLED
PEOPLE’S
ORGANIZATION
S
PREJUDICES &
ATTITUDES
Who?
• HRH Crisis – especially in Africa.
– Global Health Workforce Alliance (2007) –
Africa needs 1.5m health workers to be
trained to address current shortfalls.
– By 2015 there will be a shortage of 800,000
physicians and nurses in Africa alone.
• Mid-level cadre
– Recent studies provide evidence for clinical
efficacy and economic value (McCord et al 2009)
• Relationship with conventional health
profession.
• Existing professions and the new CBR
• But, nobody is currently trained to work
across these areas- it needs a unique and
new skills set, and possibly a new
‘profession’.
MacLachlan, Mannan& McAuliffe (2010) Lancet
Staff skills not staff types for community based rehabilitation.
• There are alternatives to a new cadre of
generalists.
– Teams working across
• Health – education-livelihoods-social-empowerment
• Groups specialising in specific components of the matrix
• But, ‘the whole of the matrix is greater than the
sum of its parts’
– More holistic work needs to be facilitated by a new
cadre
Developing a new cadre of CBR worker will be
critical for applying the matrix to its fullest
potential.
A new cadre could increase system coverage &
performance, as well as enhancing access &
equity.
2 other issues
• 1. Process, Context, Content.
•
MacLachlan (2009) Rethinking Global Health Research: Towards Integrative Expertise.
Globalization & Health
• 2. Human Dynamics of Development
GOAL: HUMAN RIGHTS – SOCIO-ECONOMIC DEVELOPMENT – POVERTY ALLEVIATION
COMMUNITY BASED
REHABILITATION
(CBR)
In International Aid
Mac MacLachlan
Thanks!
• Thanks to all my collaborators in the
EquitAble, A-PODD and DeliverAble
consortia and to friends and
colleagues in AfriNEAD.
AfriNEAD 2011
African Network for
Evidence-to-Action on Disability
3rd Symposium
28-30th November 2011
Workshops
27th Nov & 1st Dec
Venue
The very beautiful
Elephant Hills Hotel
Victoria Falls
Zimbabwe
www.afrinead.org
Evidence into Action?
Two levers to assist with this:
1. African Policy on Disability and
Development – A-PODD
1. Evidential factors
2. Non-evidential factors
2. African Network on Evidence to Action
in Disability – AfriNEAD
1. Multi-stakeholder network
ADDUP Model 2010