Community-based rehabilitation (CBR)
Origins, outlines, futures
Ros Madden
Centre for Disability Research and Policy
WHO Collaborating Centre for Health Workforce Development in
Rehabilitation and Long Term Care
1. CBR origins
Talking about:
› From a narrow view of health to a broader (whole person) view
- Embracing major areas of life and many areas of services
- Not just diagnosis and disease, but well-being and functioning
› Disability in developing contexts?
› Path to the CBR Guidelines
- Early discussion and motivation
- Key documents along the way
2
Context: some big ideas
Health as a global notion
Health = Absence of disease
Health = Complete physical, psychological, spiritual and social well being
WHO Constitution http://www.who.int/about/mission/en/
3
How to describe ‘health’?
› With this global notion of health, it’s not just about disease and diagnosis
› Think about a child with cerebral palsy:
- What do we know if we know only the diagnosis?
- Many areas of life and activity could be affected, depending on the nature of the
condition and the environment.
4
So how do we describe ‘well being’?
› We can make a good start with ‘functioning’
› The ICF is the standard global framework for - and
Classification of Functioning, Disability and Health
› The ICF enables us to describe physical and psychological
functioning, as well as participation in society
5
ICF: Interaction of concepts
Health Condition
(disorder/disease)
Body functions &
structures
(Impairment)
Activities
(Limitation)
Environmental
Factors
Participation
(Restriction)
Personal
Factors
6
Biopsychosocial model
› personal problem
and
social problem
› medical therapy
and
social integration
› individual treatment
and
social action
› professional help
and
group responsibility
› personal changes
and
environmental changes
› behaviour
and
attitude, culture
› care
and
human rights
› health policies
and
politics
› individual adaptation
and
societal change
7
Disability in different contexts
Environmental factors: a comparison of
Environmental factors: Australia and Cameroon
a comparison of Australia and Cameroon
› How does the lived experience of disability vary according
to the environment?
› For people with
- Paraplegia
- Epilepsy
› A study using qualitative and quantitative analysis
Reidpath et al 2001
8
Cameroon
9
Australia
Disability in different contexts: very briefly
Epilepsy
› Cameroon
- Discrimination, low income, lack of services, relationship formation, injury
(burns)…
› Australia
- Discrimination, stigma, medication side effects (headaches, drowsiness,
dizziness, forgetfulness)…
Paraplegia
› Cameroon
- Discrimination, sanitation and hygiene, social isolation, economic deprivation,
mobility, lack of wheelchairs and accessible environments, shortened life span
(expectation two years - pressure sores life threatening)…
› Australia
- Discrimination, problems accessing services, managing incontinence, pain…
11
Disability in different contexts
Source: Allotey et al 2003
12
Disability in different contexts
› Based on subjective quality of life scores:
- People in Australia with paraplegia were ‘better off’ than
those with epilepsy
- People in Cameroon with epilepsy were ‘better off’ than
those with paraplegia
› Conclusion: Applying global ‘severity weights’ for disease
across the world is not valid
› In ICF terms, the interaction between health condition and
environment varies from place to place
13
Disability in different contexts
Cambodia and Lao PDR
14
Faustina in Moshi, Tanzania
https://www.youtube.com/watch?v=w5QXcFk4kvA
The path to the CBR Guidelines
› 1947: WHO formed, and provides a global definition of health
› 1978: Alma-Ata declaration : primary health care as a strategy for
achieving WHO goal of ‘health for all’
› WHO establishes Community-based rehabilitation (CBR): to bring primary
health care and rehabilitation services to people with disabilities,
particularly in low-income countries
› 1989: Manual on Training in the community for people with disabilities –
signals the role of stakeholders in program planning and management
› 1990s: Widening views on disability, widening views of stakeholders
locally and internationally on the role of CBR
› 2001: Publication of the ICF
› 2004: CBR Joint Position Paper published by ILO, UNESCO, WHO
› 2006: The UN Convention on the Rights of Persons with Disabilities
16
CBR Joint Position Paper
The fully developed concept of CBR
Community based rehabilitation (CBR):
› ‘‘a strategy within general community development for the rehabilitation,
poverty reduction, equalization of opportunities and social inclusion of all
people with disabilities.
› CBR is implemented through the combined efforts of people with
disabilities themselves, their families and communities, and the relevant
governmental and non-governmental health, education, vocational, social
and other services’’.
WHO/ILO/UNESCO 2004, p. 2.
Later also in the CBR Guidelines (2010) page 24
17
What have we seen about the origins of CBR?
› The growth of the CBR ideas alongside the growth of ideas about health,
disability, disability rights, and community development
› And the development of other key instruments including
- The UN Convention on the Rights of Persons with Disabilities
- The ICF
› The challenges of disability in low resource settings
18
Feliza in Sucre, Bolivia
https://www.youtube.com/watch?v=wu-f1FEFNMY
2. CBR outlines
Talking about:
› CBR Guidelines – overview of contents and what the guidelines actually
are
› Connections between CBR, UN Convention, ICF
› How are we going? Findings of the World report on disability about
disability prevalence, status of people with disability in higher and lower
income countries, health workforce distribution worldwide, CBR potential
and evidence for efficacy
20
The CBR Guidelines
WHO/UNESCO/ILO/IDDC (2010)
21
What the CBR Guidelines do
› Provide guidance on how to develop and strengthen CBR
programmes
› Promote CBR as a strategy for community-based
development involving people with disabilities
› Support stakeholders to meet the basic needs and enhance
the quality of life of people with disabilities and their families
› Encourage the empowerment of people with disabilities and
their families.
http://www.who.int/disabilities/cbr/guidelines/en/
22
CBR Matrix
Contents of the CBR Guidelines
› Introduction including ‘management’
› Then one volume for each component of the matrix:
- Health
- Education
- Livelihood
- Social
- Empowerment
› Supplementary booklet
- CBR and mental health
- CBR and HIV/AIDS
- CBR and leprosy
- CBR and humanitarian crises
24
UN Convention
Purpose: ‘to promote, protect and ensure the full and equal
enjoyment of all human rights and fundamental freedoms by all
persons with disabilities …’
Principles:
 Respect for inherent dignity, individual autonomy …
 Non-discrimination
 Full and effective participation and inclusion in society
 Respect for difference and acceptance of persons with disabilities
as part of human diversity and humanity
 Equality of opportunity
 Accessibility
 Equality between men and women
 Respect for the evolving capacities of children and…identities
25
CBR and UN Convention
The same principles as the UN Convention, plus
› Empowerment including self-advocacy
› Sustainability
The CBR matrix, providing a common framework of
components for programs: health, education, livelihood, social,
empowerment
26
Links and differences
UN Convention on the Rights of
Persons with Disabilities
- Normative legal and moral framework for
policy
CBR Guidelines
- Principled services with defined goals
ICF
- Framework, language and building blocks
for information, consistent with rightsbased concepts of disability
27
UN Convention (Art.19), ICF, CBR
Article 19: Living independently and being included in the community
ICF Participation: Involvement in 9 broad life areas
ICF Environmental factors : physical, social and attitudinal
Mainstream services: Education, Health, Housing, Income support,
Transport
CBR: Provides support in any area of activities and participation;
intervenes in environment including with mainstream services
28
CBR: Community-based
Inclusive Development
Development
Inclusive
Approach
Inclusive
Development
Community
Based
Approach
CBR guidelines
CommunityBased
Inclusive
Development
Sustainable
development/
Society
For
All
27 October, 2010
29
CBR: Comprehensive model
Medical
Medical
%
Social
Social
%
CBR guidelines
Human
Rights
Human
Rights
%
27 October, 2010
CBR: Twin-track approach
Inclusive
Health
Inclusive
Education
Inclusive
Livelihood
Inclusive
Social
action
CBR
Empowerment
1. Facilitate key development
sectors to be inclusive
2. Assist people with disabilities to access
services from the key development
sectors on an equal basis as others
Livelihood and Empowerment
Women’s self help group - Microfinance
Livelihood
33
Health & rehabilitation
Assistive devices
35
Education
36
Mia in Beirut, Lebanon
https://www.youtube.com/watch?v=E_2ZEwhh9WQ&feature=youtu.be
World Report on Disability
› UN Convention as
framework - a broad
view of disability
› ICF as technical
standard and
statistical framework
38
Estimating prevalence
› Disability multidimensional
experience. Interactive & varies with
the environment
› Disability on a continuum: The need
to set thresholds
› More than a billion people with
disability (15% of world’s
population) experience significant
difficulties in their everyday lives
› Some 110 to 190 million people
(1-2%) encounter very significant
difficulties in their daily lives.
WHO & World Bank: World Report on
Disability
39
Findings
- Higher prevalence
- Shifting trends in health
conditions and risk factors
- Affects the most vulnerable
- Outcomes for people with
disabilities are worse
- Need and unmet need
- Increased costs
WHO & World Bank: World Report on Disability
Risks to general health for people with disability
› Higher risk of developing secondary conditions (e.g. pain, depression, osteoporosis)
› Risk of developing co-morbid conditions (e.g. influenza, pneumonia, poor fitness due to
inactivity)
› Greater vulnerability to age-related conditions (ageing may begin earlier e.g..
Alzheimer's with Down Syndrome)
› Increased rates of health risk behaviours (overweight, smoking, low levels of activity)
› Greater risk of being exposed to violence (physical, sexual)
› Higher risk of unintentional injury (e.g. road crashes, burns, falls)
› Higher risk of premature death
› Needs and unmet needs
- For health promotion, prevention and treatment (e.g.. reproductive health, dental care, mental
health services)
- People with disabilities more likely to report unmet needs for care than others; and in low income
countries they have higher rates of not receiving care than similar people in high income
countries
World Report on Disability 2011 (pages 58-60)
Scope of World Report
The chapters cover:
1. Understanding disability
2. Disability – a global picture
3. General health care
4. Rehabilitation
5. Assistance and support
6. Enabling environments
7. Education
8. Work and employment
9. The way forward:
recommendations
The disabling barriers are:
› Inadequate policies and
standards
› Negative attitudes
› Lack of provision of services
› Problems with service delivery
› Inadequate funding
› Lack of accessibility
› Lack of consultation and
involvement
› Lack of data
World Report in Disability pages 262-3
What is rehabilitation?
The World Report on Disability defines rehabilitation as
‘a set of measures that assist individuals who experience, or
are likely to experience, disability to achieve and maintain
optimal functioning in interaction with their environments’
Used in the Report to include ‘habilitation’ which ‘aims to help
those who acquire disabilities congenitally or early in life to
develop maximal functioning’
Workforce: PT
44
Workforce: OT
45
Lack of rehabilitation workforce
‘Many countries, developing and developed, report inadequate, unstable, or
nonexistent supplies, and unequal geographic distribution of, rehabilitation
professionals. Developed countries such as Australia, Canada, and the
United States report shortages of rehabilitation personnel in rural and
remote areas.’
(World report in disability page 108)
Rachael in London, England
https://www.youtube.com/watch?v=nwBzb7m2n64
The promise of CBR
› ‘Community-based workers – a third level of training – shows promise in
addressing geographical access. They can work across traditional health
and social services boundaries to provide basic rehabilitation in the
community while referring patients to more specialized services as
needed. CBR workers generally have minimal training, and rely on
established medical and rehabilitation services for specialist treatment and
referral.’
World report page 111
CBR in more than 90 countries
World report on disability
48
Lack of evidence: a barrier to wider rollout?
‘Importantly, the World Report on Disability also recognised the substantial
gaps in the research in CBR. Many authors have identified the need for a
stronger CBR research base and observed that the existing body of
evidence on the effectiveness and efficacy of CBR is weak.’
Lukersmith et al 2013
49
What have we learnt about CBR as it is now?
› CBR now has clear guidelines, linked to the UN Convention
› It is a rational direction for services in view of widespread workforce
shortages in many countries
› It is at the stage where the lack of evidence of its efficacy will start to be a
barrier to expansion
50
3. CBR expectations and futures
Talking about:
› Global Disability Action Plan Action
› CBR spread
- Countries in our region are looking at it
- Country CBR Networks
- CBR Global Network
› Building evidence on CBR – ‘from the ground up’
51
Global Disability Action Plan 2014-21:
Better health for all people with disabilities
The Action Plan has three objectives:
1.
to remove barriers and improve access to health services and
programmes;
2.
to strengthen and extend rehabilitation, habilitation, assistive
technology, assistance and support services, and community-based
rehabilitation;
3.
to strengthen collection of relevant and internationally comparable data
on disability and support research on disability and related services.
CBR in the DAP
› Para 37. Community-based rehabilitation programmes can provide
rehabilitation, assistive technologies and support services in countries with
limited resources and empower persons with disabilities and their families.
› Action 2.4 Expand and strengthen rehabilitation and habilitation services
ensuring integration, along the continuum of care, into primary (including
community), secondary and tertiary levels of the health care system, and
equitable access, including timely early intervention services for children
with disability
- Use CBR as a strategy to complement and strengthen existing rehabilitation and
service provision particularly in countries where few services are available
› Para 47: Priority areas for research include ‘cost–effectiveness of
rehabilitation measures, including community-based rehabilitation
programmes’
53
Action in our region
› Better connections needed between institutional rehabilitation and CBR
› ‘The study found that there is a significant shortage of rehabilitation health
workers in the Pacific region… One clear theme that emerged… was that
there was little contact between community level services and those
services offered in hospital settings for people with disabilities. Key
informants … described difficulties with the referral pathways, from health
services to the rehabilitation services, that are available within health care
systems and in the community, such as those provided by an NGO or a
DPO’. (Madden et al 2014)
› First Peoples Disability Network, Australia
› ‘There is a growing body of evidence that suggests the Community Based
Rehabilitation (CBR) model has relevance to providing services in rural
and remote Australia’. FPDN 2011
54
Action in Africa : CAN
Information on:
- 41 countries
- 377 CBR programmes
www.afri-can.org
24/07/2016
Global CBR Network
› The 1st CBR World Congress
Over 1,000 delegates of representatives from disabled people’s
organisations, policy makers, rehabilitation experts, local and international
non-governmental organisations, government officials and other
stakeholders from around the globe attended the first Community Based
Rehabilitation (CBR) World Congress in Agra, India during 26-28
November 2012.
› CBR Global Network was officially launched at the Community-based
Rehabilitation (CBR) World Congress in Agra, India on 26-28 November
2012 . It was formed based on the partnership with the CBR regional
networks and other key international stakeholders
http://www.cbrglobal.org/
56
Building evidence: Why monitoring?
Our approach
1. Monitoring is part of local
management and enables:
- Reflection and adjustment as you go
- Local management of information
2. Must work from ‘local level and up’
and ‘top level and down’, to achieve
- Local relevance, control and flexibility
- Consistency and comparability across
regions and countries
3. Generalise the principles not the
content, to achieve
- Local specificity
- Ability to generalise
57
Why the CBR MM&M?
› Community-based rehabilitation (CBR) is a valued community
development approach but there is a lack of evidence of its efficacy
(World Report on Disability 2011, Global Disability Action Plan 2014).
› To build evidence about CBR, consistent with the philosophy of CBR,
monitoring should be the starting point: locally controlled and
empowering stakeholders with information.
Aim of the CBR MM&M:
The development of a monitoring toolkit to assist CBR program
managers and stakeholders to record locally meaningful information and
data, based where possible on international standards.
58
Method: Overview
1. Literature review and analysis (36 M&E articles and reports)
Need for more rigorous and compatible monitoring and evaluation practices.
ICF a relevant and potentially useful classification for CBR monitoring: analysis of
information items in literature.
2. Collaborative work with CBR stakeholders
2011: Working sessions with CBR stakeholders from Vietnam, Lao PDR and the
Philippines. Participants’ information needs, then first draft of organised lists of
information items.
2013: CBR stakeholders from PNG, Timor Leste, Solomon Islands and Fiji in 2013,
Similar process, resulting in first draft Manual and Menu.
3. Synthesis, consultation and review
Synthesised information items from all previous stages via thematic analysis.
Mapped to relevant frameworks (e.g. CBR Matrix) and data standards (including
ICF).
Further consultation with collaborators to refine the Manual and Menu.
Review by Advisory Group and external reviewers.
Information design: basic questions
The basis of collaborative work - and then Manual
Considering …
Who?
Why?
Fit with organization's goals and roles
Information needs of all stakeholders
All people needing, using or
affected by your data
What?
- Turn high level information needs into
precise ‘information outputs’ …
- Then into data item ‘inputs’
- Consider ‘standard tools’ incl. ICF
Check the statement of
outputs with all
stakeholders’ information
needs
How?
- How is information recorded? And
transmitted?
- Forms, questions, assessments
- Definitions, use of tools (ICF),
documentation
-How is information stored, protected,
extracted?
-How is information disseminated
Who records? When in the
process?
Who else is involved e.g. in
measuring?
Who has access to
information?
Formats and media for
dissemination?
60
Planning and monitoring
Questions for each CBR matrix component:
› What services/activities exist already?
› Do people with disability have access to these services/activities?
› Would it help them if they did?
› What can we do to make the access to these better/more relevant?
› What extra (special) action would assist people with disabilities and their
families need?
› How does each ‘box’ relate to other CBR ‘boxes’?
The results
62
The results
› The Manual, with its step-by-step process for collaborative work
information needs, designing monitoring activities and developing a
monitoring plan to meet local information needs and priorities, using items
from the Menu.
› The Menu, containing evidence-based information items, based on
recognised standards and knowledge and experience of collaborators, for
use in monitoring CBR and other disability inclusive development
programs.
63
Steps explained in the Manual
Before you begin
1
Prepare for collaboration
2
Design information
Exercise 1: Why is information needed? How will it be
used?
Exercise 2: What items of information are needed?
Exercise 3: How will we collect and record the information?
Exercise 4: When and where will information be collected,
who will collect it, and how will it be stored?
Exercise 5: Who will use the information and how?
3
Develop the monitoring plan
4
Undertake monitoring activities
5
Analyse and use information
6
Review monitoring activities & the monitoring plan
64
Menu of information items: Headings
P1 Person—Personal profile
& history
P2 Person—Functioning
and disability
P2.1 Body functions
P2.2 Activities and
Participation
P3 Person – Environmental
factors
P4 Person – Outcomes
O1 Organisation – Purpose, structure,
strategy
O2 Organisation – Resources
O3 Organisation – Environment
O4 Organisation – Outcomes
A1 Activities – What is done
A2 Activities – Outcomes
W1 Workforce – Personal profile of staff
W2 Workforce – Knowledge and skills
W3 Workforce – Responsibilities and
tasks
W4 Workforce – Training undertaken
W5 Workforce – Quality of performance
65
In the Menu
Each information topic or item has short sections on:
› Definition: a proposed definition of the item.
› Significance and use: an explanation of the significance of
the item and an illustration of its possible use in monitoring.
› Recording guide: suggestions for recording or coding the
information, where possible in ways that enable statistics to
be compiled (and related to international standards where
they exist).
- These suggestions or examples can be used or modified to suit local
needs.
66
Outcomes of the project (so far)
› Freely available guidance for CBR and other disability inclusive
development programs to plan locally controlled monitoring activities
which empower stakeholders with information
› Deeper understanding of the diverse information needs and priorities
of CBR stakeholders from Asia and the Pacific region, and of data
standards that are relevant and useful for CBR monitoring
› A strong and vibrant network of CBR stakeholders in the Asia Pacific
region, underpinned by shared commitment to CRPD, CBR guidelines
and matrix, and the ICF.
› A desire among collaborators and CBR network to test and improve
the Manual and Menu…
67
CBR: promise and challenges
CBR is the main way in which people with disabilities in most of
the world have any chance of accessing rehabilitation services.
(Hartley, Finkenflugel, Kuipers The Lancet 2009)
Need to build evidence
to enable growth,
resources and
sustainability
Disability Action Plan
68
Some references and links
Allotey P, Reidpath DR, Kouame A, Cummins RA 2003. The DALY, context and the determinants of the severity of disease:
an exploratory comparison of paraplegia in Australia and Cameroon. Social Science and medicine 57 (2003) 949-958
Centre for Disability Research and Policy 2014. Monitoring Menu and Manual (MM&M) for CBR and other community-based
disability inclusive development programs. University of Sydney Faculty of Health Sciences:
http://sydney.edu.au/health-sciences/cdrp/projects/cbr-monitoring.shtml
First Peoples Disability Network. Inclusive Community Development: Community Based Rehabilitation and its potential
application in Aboriginal and Torres Strait Islander communities. 2011. http://fpdn.org.au/publications
Lukersmith S, Hartley S, Kuipers P, Madden RH, Llewellyn G, Dune T. Community-based rehabilitation (CBR) monitoring and
evaluation methods and tools: a literature review. Disabil Rehabil 2013, Vol. 35, No. 23 , Pages 1941-1953
Ros Madden, Charlotte Scarf, Sainimili Tawake, et al. Collaboration, communication and information: Keys to success with
the Disability Action Plan in the Pacific. Commonwealth Health Partnerships 2014. Commonwealth Secretariat, London, UK.
http://www.commonwealthhealth.org/wp-content/uploads/2014/05/6-Disability-Action-Plan.pdf
Reidpath DR, Allotey P, Kouame A, Cummins RA. 2001. Social, cultural and environmental contexts and the measurement of
the burden of disease: An exploratory comparison in the developed and developing world. Global Forum for Health
Research, University of Melbourne
UN Convention on the Rights of Persons with Disabilities http://www.un.org/disabilities/convention/about.shtml
WHO 2001: International Classification of Functioning, Disability and Health
http://apps.who.int/classifications/icfbrowser/
http://www.aihw.gov.au/disability/icf/index.cfm
World Health Organization (2010). Community-based rehabilitation: CBR guidelines. Geneva: WHO
http://www.who.int/disabilities/cbr/guidelines/en/
World Health Organization and World Bank 2011. World Report on Disability. Geneva: WHO
http://www.who.int/disabilities/world_report/2011/report/en/
WHO (World Health Organization) Executive Board, 2014. Draft WHO Global Disability Action Plan 2014–21: Better health for
all people with disabilities. EB134/16.
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