/ Technical Adviser
Accessibility, Town & Disability
Inclusion Unit

PRACTICAL GUIDE

Carrying out a local, participative diagnosis

of a disability situation

and disabled people’s citizen participation.

DRAFT

November 2006Eric Plantier-Royon

INTRODUCTION

L

The Disability and Inclusive Local Development sector works with local disabled people’s organisations and local authorities using a participative and constructive approach requiring these local authorities to be actively engaged in its projects.

In the South, local authorities are seeing an increase in their global action capacities as competencies are being massively decentralised from State to local level.They are becoming key players capable of having a significant and direct impact on the day-to-day lives of people with disabilities.

Our Disability and Inclusive Local Development projects work towards strengthening local organisations and actions. Wherever possible, our projects should be shared with, supported and promoted by the local authorities so that they have the best possible chance of being taken over and becoming sustainable when our own engagement comes to an end.

We use a dual approach in implementing our Disability and Local Development projects :

► A local development approach, which seeks to involve all local stakeholders in the definition and implementation of local projects which are both concerted and appropriate to everybody.

► A rights-based approach, which aims to promote respect for fundamental rights and equal opportunities for access to local services.

Local, participative diagnoses of the situation of people with disabilities are often useful in helping dialogue to emerge.This type of diagnosis, generally developed jointly and concertedly, is a means of raising the awareness of local stakeholders to disability issues.It can also help disabled people to become aware of their own ability to become actors in local development.

The objective of this practical guide is to provide different tools and methods for carrying out a local, participative diagnosis of disabled people’s situation and the extent of their citizen participation.

This kind of diagnosis is half-way between a big, statistical-type study (which provide exhaustive and quantitative knowledge of the different types of disabilities, their causes and consequences), and an empirical appraisal of the local situation “according to the experts”.

This method could well be extended to all Handicap International projects operating at local level.

Another useful document to consult is the methodology guide «POUR UNE VUE PANORAMIQUE SUR L’ACCES AUX DROITS DES PERSONNES HANDICAPEES» (in French only), which is a “simplified diagnosis” tool for planning the improvement of access to disability rights, published by the Disability Rights and Policies Unit in 2004.

CONTENTS

1 THE MAIN OBJECTIVES OF A DIAGNOSIS

1. 1 To improve our knowledge of local associations

1. 2 To improve our knowledge of local stakeholders

1.3 To improve our knowledge of local disability issues

1. 4 To improve our knowledge of the national context

1. 5 To raise awareness and mobilise opinion about the need for change

1. 6 To initiate local consultation

1.7 To raise the profile of DPOs’ resources and help them gain confidence

1.8 To prepare the writing of a good project

2 THE METHODOLOGY FOR CARRYING OUT A DIAGNOSIS

2. 1 Duration of the diagnosis

2. 2 The main stages of the diagnosis

2. 3 The need for a participative diagnosis

2. 4 Contents of the diagnosis, being prioritising the courses of action

2. 5 Who should steer the diagnosis?

3 MAIN DIAGNOSIS TOOLS

3 .1 Individual interviews with stakeholders

3. 2 Focus groups

3. 3 The SWOT method : Strengths, Weaknesses, Obstacles, Triumphs

3. 4 Written Brainstorming

3. 5 Analysing the priority problem – Construction of the causal tree.

3. 6 Prioritising the problems

3. 7 Stakeholders – strategic analyses

3. 8 Life habits/ environmental factors

3. 9 Detailed analysis sheet of an NGO or association’s profile

3.10 Tool for analysing the participation of stakeholders and partners

3. 11 Information sheet on a potential NGO partner

3.12 Information to be gathered during the situation analysis and problem identification phase

1 THE MAIN OBJECTIVES OF A DIAGNOSIS

Local, participative diagnoses of the situation of disabled people and the extent of their citizen participation may be carried out:

  • either prior to the writing of a “Disability and Local Development” project proposal
  • or as an activity in its own right as part of a “ Disability and Local Development” project

The key objectives of this type of diagnosis are :

1. 1 To improve our knowledge of local associations

  • Identify Disabled People’s Organisations (DPOs) operating in the diagnosis zone and their representatives;
  • Analyse the needs, aspirations and potential of these DPOs;
  • Where there are several groups of disabled people, do their needs, aspirations and potential converge ?Is there a leader able to speak for everybody ?Is there an umbrella organisation?Is it representative ?
  • If there are no DPOs, is it possible to form a consultative and representative group of disabled people ?

1. 2 To improve our knowledge of local stakeholders

  • Carry out an inventory of actors in the associative and institutional sectors already engaged in the disability field as well as those who might engage in the future, and analyse the relevance and effectiveness of their contribution.
  • Analyse the ways in which they involve disabled people in their decision-making :
  • Identify existing strengths (RESOURCES AND CAPACITIES), whether or not they are disability- related, and resource persons, and mobilise the key players.
  • Clarify existing decision-making processes and find out how local government is organised ( town, province, region). Find out about the extent of decentralisation of State competencies to local level so as to establish how DPOs can fit into the system.

1.3 To improve our knowledge of local disability issues

  • Be familiar with the main causes and types of disability
  • Establish the main environmental obstacles that create a handicap for people with disabilities
  • Analyse the main obstacles preventing disabled people from accessing their rights, and analyse their demands and needs.

1. 4 To improve our knowledge of the national context

  • Find out about existing national disability strategiesLocal action cannot be disassociated from the national context.

1. 5 To raise awareness and mobilise opinion about the need for change

  • Mobilise stakeholders on priority problemsThe diagnosis must be part of a Research-Action process as the essential goal is to research ways of improving the situation of people with disabilities, who should be direct actors in the process.The diagnosis is a tool for building partnerships and alliances with DPOs and public organisations, and for ensuring that the projects are really accepted and adopted by the local stakeholders.In this respect, the diagnosis validation stage is very important.
  • Support the emergence of project dynamics, identify specific actions to be carried out subsequently by each of the actors involved, and formalise the consultation mechanisms between the different partners in order to improve the management of disability issues in the town, province or region.
  • Monitor and evaluate the projects, with a clear picture of existing conditions in mind.

1. 6 To initiate consultation at a local level

  • Establish and facilitate collaboration between all the different stakeholders who do not know each other so as to begin working participatively and introduce consultation.
  • Raise the awareness of all the stakeholders concerned to disability issues. The diagnosis phase is a particularly good time to sensitise stakeholders and elected representatives in particular to disability problems.The diagnosis is an opportunity for the key players in a project to meet, discuss, get to know each other better, and get used to working together.It is therefore a good time to start a consultation process.

1.7 To raise the profile of DPOs’ resources and help them gain confidence

  • Enable the DPOs to identify and raise the profile of their resources and potential.Carrying out diagnoses helps the actors involved become aware of their capacities.

1.8 To prepare the writing of a good project

  • The diagnosis provides information on what is happening in the geographical area concerned necessary for writing a relevant project.It strengthens the project’s quality approach by strengthening the coherency of any action and improving the chances of a global approach to disability at local level.

2 THE METHODOLOGY FOR CARRYING OUT A DIAGNOSIS

2. 1 Duration of the diagnosis

The diagnosis should be carried out over a relatively short period (1 to 4 months maximum, depending on the size of the territory concerned).

In order to keep it fairly short, the diagnosis will not usually attempt to carry out a precise quantitative study of disability, as this requires a very large team of researchers and a strict procedures based on representative sampling.

“Town & Disability” – type local diagnoses are very different from the sort of statistical diagnosis carried out in Afghanistan and Morocco on a national scale.

2. 2 The main stages of the diagnosis

Stage / Objectives / Realisation method
CHOOSING THE METHODOLOGY / Choose between the three options given below (participative (or oriented) method, steering group and non-participative method), giving priority to the most participative method possible / Internal HI team
Option 2, the steering group, is often a good compromise and can they stay in place during the implementation of the project.
PRE- IDENTIFICATION / Initial documentary research, identification of key contacts, etc. / Internal HI team, after a prior analysis of the local stakeholders’ map
SETTING UP OF A STEERING GROUP / Involve the different stakeholders concerned, especially the local authorities and the DPOs, / Meetings
SETTING UP OF A TECHNICAL WORKING
GROUP / Develop and validate the diagnosis methodology
Develop the tools (interview forms, analysis charts, etc.) / Meetings
PUBLIC MEETING TO LAUNCHTHE DIAGNOSIS / Explain the objectives, expected outcomes and methodology / Meetings
TEAM TRAINING / Explain the working method and the tools to be used
Sensitise the researchers to disability issues (Handicap Creation Process, disability, impairment, etc.) / Training workshops
CARRYING OUT THE DIAGNOSIS / Carry out an inventory of actors in the associative and institutional sectors already engaged in the disability field and those who might engage in the future, and analyse the relevance and effectiveness of their contribution. Identify resource people.
Get a clear picture of the disability situation (causes and types of disability),
Analyse the main obstacles preventing disabled people from accessing their rights; analyse their demands and needs. / Contents described in paragraph 2.4
Tools described in chapter 3
CONSOLIDATION SEMINAR / present the initial outcomes, invalidate or validate certain points, provide additional information, give detail of particular aspects, etc. / Participative workshops
ANALYSIS AND VALIDATION OF THE MAIN PROBLEMS AND THE OBJECTIVES OF THE PROJECT / On the basis of a situation analysis of access to rights by disabled people, draw up an action plan;
Validate and analyse the outcomes of the diagnoses and define a global intervention strategy / Workshops for the working groups, validation by the steering group
WRITING OF THE DIAGNOSIS REPORT / Writing of the diagnosis report / Writing
WRITNG OF A SYNTHESIS OF THE DIAGNOSIS / highlight the main points from the diagnosis in order to be able to communicate on these key aspects / Writing
FINAL VALIDATION / Do all the participants feel that their opinion has been taken into account ?
Do all the participants feel that their environment is accurately represented ? / Meeting and individual interviews, targeted pooling of what come out of these encounters

2. 3 The need for a participative diagnosis

There are several forms of diagnosis with varying “degrees of participation” , each adapted to specific realisation conditions :

-The participative or “oriented” method : this is the most participative method with the local stakeholders determining the direction of the diagnosis completely.The person in charge of running the diagnosis is a facilitator who leads the working groups.This method has the possible disadvantage of taking too long.

-The steering committee : this involves setting up a diagnosis steering committee representing the local stakeholders, or even higher echelons.It meets at least three times : when the study is launched to validate the approach, half-way through and at the end for the pooling of the outcomes. The community is often invited to this final meeting.At the half-way stage, the Committee may be required to reorient the diagnosis in light of the initial outcomes established by the person mandated to carry out the study.Finally, this person presents the committee and community with the final results which then serve as a basis for programming that can be participative.

-Non-participative method : the person or group responsible for carrying out the diagnosis does so alone.There is a greater risk here of choosing an inappropriate course of action.The community is informed of the outcomes via a meeting and/or a final report. The programming stage may then be participative, but as the population, didn’t participate in the diagnosis, it will find it difficult to accept and adopt the outcomes and as a result the project may be less relevant.

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Advantages / Disadvantages / Implementation conditions
Participative method / -the results have the support of all the stakeholders concerned and the diagnosis is an accurate reflection of the local situation as far as they are concerned
-there is a very strong chance that the projects or activities proposed at the end of the diagnosis correspond to the aspirations of the local stakeholders / -We lose the advantage that comes from someone from outside looking at the situation with new eyes
-Many different distortions are possible when the participative tool is not used properly
-Method that takes both time and money / -Freedom of expression, no bars on communication
-Requires a lot of time and people
-Competence in implementing participative methods required
-Either the request for a diagnosis comes from the local stakeholders, or the organisation that requested it is well known and is well respected by local stakeholders
Steering Committee / -The key local stakeholders take an active part in the study and so adopt the results
-Involving the local authorities, an essential partner in “Town & Disability” projects, from the diagnosis stage is a way of ensuring the sustainability of the actions. / -The steering committee will never be completely representative of the local stakeholders
-The results will be dependent on the choice of committee members, so there is a need to be familiar with the local stakeholder scene from the outset. / -Freedom of expression, no bars on communication
-Supposes sound prior knowledge of the local stakeholders to be included on the committee
-The organisation that is to carry out the diagnosis should preferably be known to the local stakeholders
Non-participative / -Requires fewer financial and human resources / -As the DPOs didn’t participate in the diagnosis they, may well not accept the results
-Difficult to assess the extent to which the results reflect the reality of the situation.

2. 4 Contents of the diagnosis, before prioritising the courses of action

PHASE / CONTENT
1) INVENTORY AND ANALYSIS OF DISABLED PEOPLE’S ORGANISATIONS / panoramic view of the situation and of DPOs over the area concerned
identify the resource people and the leaders
analyse how dynamic the DPOs are
analyse relations between DPOs
2) INVENTORY AND ANALYSIS OF LOCAL STAKEHOLDERS / list the actors who already work, or who may in the future work in the disability field (with possibility of producing a guide)
actions implemented in the disability field by the different stakeholders
analysis of relations between stakeholders, the stakeholders’ “map”, existing or potential partnerships.
analysis of the relevance and the effectiveness of these stakeholders
understand the administrative organisation and the extent of the decentralisation of competence and resources from the State to the local authorities
3) ANALYSIS OF THE CONTEXT AND OF NATIONAL LEGAL FRAMEWORK / the legal framework in effect (law, decrees, etc.)
get a clear vision of the national public institutions working with people with disabilities as well as the institutionalised structures for consultation and coordination on disability issues that exist between the public sector and civil society
THE MAIN TYPES OF DISABILITY AND THE ENVIRNMENT OF DISABLED PEOPLE / Get a clear picture of the disability situation (causes and types of disability)
5) ANALYSE OBSTACLES TO DISABILITY RIGHTS AND THE DEMANDS AND NEEDS OF PWD / Analyse the main obstacles preventing disabled people from accessing their rights, and analyse their demands and needs.
highlight the strong/weak points, potential and obstacles
observed by those involved in the fields of access to work, education, sport, vocational training, etc.
Propose methods of intervention
Participative workshops with disabled people and the key players in the disability field on each site
6) ANALYSIS AND VALIDATION OF THE MAIN PROBLEMS AND THE OBJECTIVES OF THE PROJECT / develop intervention proposals for improving disabled people’s access to their rights.

2. 5 Who should steer the diagnosis ?

What profile should the person who is to carry out the diagnosis have ?

He or she should be a generalist, with the following key professional skills :

-An understanding of disability is essential (understanding and knowledge of approaches, setting up of information and guidance channels…),

-Knowledge of basic local development concepts (territory projects, organisation of a participative process ,etc.),

-Sound methodological experience of participative diagnoses and surveys,

-Ability to synthesise and analyse, and good writing skills

-Adaptability and diplomacy with the local teams and partners.

-Good inter-relational skills and listening skills.

-Ability to use project planning, monitoring and evaluation (PME) tools

Facilitation and mediation are needed, as is knowledge of different forms of participation, of how local stakeholders operate and of their strategy (local authorities and DPOs in particular). The ability to run meetings is another essential quality for the post.

A volunteer with generalist training should be capable of the task in most cases.

If the diagnosis is an integral part of the project’s activities, it will of course be the project team that carries out the diagnosis.