MAINSTREAMING OF DISABILITY
IN REGIONAL AND LOCAL POLICIES
Final Report
February2007
“I congratulate the EDF and the working groups in the eight project countries on their achievements in the mainstream project. Particularly I appreciate the systematic approach applied in the six different steps of moving from more or less nothing to a formal plan for integrating disability measures into a number of important sectors of society.I strongly believe that the human rights approach can be very useful in this context. If you could succeed in making the local planners view the situation of people with disabilities through a human rights lens, they would discover the necessity to integrate disability needs into the general planning process. It would hopefully also be possible for them to discover instances of exclusion and discrimination perhaps stemming from their own earlier lack of consideration for disability matters. This new insight could then serve as a powerful instrument in changing the conditions of life for persons with disabilities”.
Bengt Lindqvist, former United Nations Rapporteur on the Standard Rules
European Conference on “Mainstreaming of disability in Regional and Local Policies”
Committee of Regions, Brussels, 06-07 November 2006
This report is the final product of a two year project supported by the European Commission, Integration of People with Disabilities Unit.
The contents of this publication do not necessarily reflect the opinion or position of the European Commission Directorate-General Employment and Social Affairs. Neither the European Commission nor any person acting on its behalf is responsible for the use which might be made of the information in this publication.
Chapter I - Project’s background
1. The human rights perspective
2. Implementation of Standard Rules through Agenda 22
2.1. Agenda 22 in Sweden
2.2. Agenda 22 in the Netherlands and in Europe
3. Mainstreaming of disability aspects
4. Project description
4.1. Project’s objectives
4.1.1. Main objective
4.1.2. Sub Objectives
4.2. Target groups
4.3. Participating countries / organisations
4.4. Method and rationale
4.4.1. Characteristics of a good plan
4.4.2. Equal partners
4.4.3. From idea to disability policy plan
4.5. The six steps implementation strategy of the mainstreaming project
1. Setting-up working groups
2. Establishing the needs of people with disabilities
3. Informal meetings with local public authorities
4. Formal negotiations
5. Written agreement
6. Implementation and evaluation plan
4.6. Organisation
4.6.1 Core Project Group
4.6.2 Steering Committee
4.6.3 The Agenda 22 experts
4.6.4 Activities undertaken since July 2006
4.7. The project’s results
4. 8 Dissemination of the project outputs and visibility of the project
Chapter II - Eight countries – eight results
Preconditions before the project’s implementation
Step 1: Setting-up working groups
Step 2: establishment of the need of people with disabilities
Step 3: Informal meetings with local public authorities
Step 4: Formal negotiations with local authorities
Step 5: Written agreements
Step 6: Implementation and evaluation plan
Chapter III - Conclusions and Recommendations
1. Conclusions
Main objective
Sub-objectives
2. Recommendations
5. Suggestions for the future
Annex I – Curriculum Vitae Project Assistant
Chapter I - Project’s background
"In all societies of the world there are still obstacles preventing persons with disabilities from exercising their rights and freedoms, and making it difficult for them to participate fully in the activities of their societies." UN Standard Rules on the equalisation of opportunities for people with disabilities.
1. The human rights perspective
Historically, aspects concerning people with disabilities have been looked upon as medical matters. An important shift came with the UN Standard Rules of the Equalization of Opportunities for Persons with Disabilities, adopted by the United Nations General Assembly in 1993 (please see Annex 2). In the introductory part of the document the concept of disability is described as follow:
“The term “disability” summarizes a great number of differentfunctional limitations occurring in any population in any countryof the world. People may be disabled by physical, intellectual or sensory impairments, medical conditions or mental illness.”(UN Standard Rules, Fundamental concepts in disability policy).
The relation between “handicap” and the environment was also established:
The purpose of the term handicap “is to emphasize the focuson the shortcomings in the environment and in many organizedactivities in society, for example, information, communicationand education, which prevent persons with disabilities from participating on equal terms.”(UN Standard Rules, Fundamental concepts in disability policy)
This approach to disability is an important step towards a human rights perspective as it shifts focus from seeing individuals as disabled to describing that disability is a matter of obstacles in the environments.
A further step came when the UN Human Rights Commission (Resolution 2000/51) established that the Standard Rules shall be used as a yardstick for the implementation of the human rights of people with disabilities.
Finally, in December 2006, the General Assembly of the United Nations adopted a Convention on the rights of persons with disabilities, in order ‘to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity’, which is due to be opened for signature and ratification by member States end of March.
The Convention also includes a definition of disability as the interaction between individual impairments and attitudinal, social and physical barriers.
The United Nations Standard Rules on the Equalisation of Opportunities for People with Disabilities have been adopted by the United Nations General Assembly, forty-eighth session, through resolution 48/96, on 20 December 1993[1].
The Standard Rules were agreed after an unfruitful attempt to adopt a human rights convention on the rights for persons with disabilities led first by Italy and then by Sweden at the end of the eighties.
They constitute the follow up of the United Nations Decade of Disabled Persons (1983-1992), and of the World Programme of action concerning disabled persons.
Within that context new concepts such as disability being the result of interaction between a person with impairments and the environment, and persons with disabilities having the right to equal opportunities as any other citizens were developed.
The Rules are not compulsory, but imply a strong moral and political commitment on behalf of States to take action for the equalization of opportunities for persons with disabilities. They give clear guidelines on actions to be taken by public authorities at all levels in different areas of policy (such as education, health and rehabilitation, accessibility, employment, social security, sports, leisure, culture, religion, participation in political life, personal integrity). They do include principles and recommendations for disability policy planning, training and awareness raising. They also can be of inspiration for actions to be led by organisations of persons with disabilities. Key principles are quality of life, full participation, and attention to multiple discrimination, equality, and full partnership of organisations of persons with disabilities. Finally they provide a basis for technical and economic cooperation among States, the United Nations and other international organizations.
2. Implementation of Standard Rules through Agenda 22
The human rights approach in disability policy has been well established on paper. The question now is how to make this approach an effective tool in the struggle for better conditions of life and participation in society on equal terms for persons with disabilities. This is where the mainstreaming approach becomes a necessary vehicle to achieve the goals of people with disabilities.
2.1. Agenda 22 in Sweden
In 1996 the Swedish Disability Federation (HSO) started a project in order to disseminate information on the UN Standard Rules in Sweden. During the time of the project the so called “Agenda 22” was invented as a method for implementation of the UN Standard Rules by drawing up local disability policy plans. The method consists of three main parts:
-Eleven characteristics of a good disability policy plan,
-Equal partnership between local authorities and organisations of people with disabilities when drawing up a plan,
-Method for drawing up a plan.
The Agenda 22-method is documented in the material “Local Authorities – Disability policy planning instructions for local authorities” and is annexed to this report (annex 3).
The ultimate objective of disability policy planning is mainstreaming of disability aspects in all society’s activities.
2.2. Agenda 22 inthe Netherlandsand in Europe
In year 2001 The Swedish Disability Federation organised a European conference to discuss the concept of Agenda 22. Since then there has been an increasing interest in Agenda 22 among the European organisations of people with disabilities. Today the Agenda 22-material is translated into 17 European languages.
Following the Conference in Sweden in 2001 the EDF Executive Board decided to start a Working Group to further promote the actual use of the Agenda 22-method in Europe to implement Standard Rules regionally and locally.
As a result of the Swedish conference, the National Disability Council of the Netherlands started translation and preparing for the Dutch (monitoring) project “Agenda 22, working at basics”. For the translation a contract was drawn with HSO. To date, with the support of the National Association of Municipalities and the National Public Health Institute, all 487 Municipalities in the Netherlands are as acquainted with the Agenda 22-method as are the local, regional and national disability organisations.
Also, on the basis of the decision of EDF Executive Board to start a Working Group, the National Disability Council of the Netherlands took the initiative to organise a meeting of national coordinators of Agenda 22-projects during the European Conference “Networking in Practice” of Rehabilitation International in November 2002. For this meeting the Swedish Disability Federationwas invited to start cooperation. The participants in the conference came to 7 conclusions, the main one being the start of the so-called Agenda 22-Network, to exchange experiences in practice. On the basis of this conclusion, together the two organisations introduced the possibility of starting a European Agenda 22-project to the European Disability Forum (EDF).
During 2003, the European Year of People with Disabilities, the European Parliament of Disabled People was a major event. For this event, the National Disability Council of the Netherlands especially highlighted in the amendments the importance of the work on the ground in Municipalities and Regions and the use of Agenda 22-method to implement this. This was taken up in the Resolution and Manifesto that were adopted by the EPDP
3. Mainstreaming of disability aspects
Mainstreaming means to always integrate disability aspects when planning, implementing, monitoring and evaluating measures that affect the lives of people with disabilities, from the very beginning and through each process on all levels of society, nationally, regionally and on local levels.This means for example, that when a local authority is planning to set up a new school, the disability aspects – the different need of students with disabilities in the school situation – shallbe considered from the very beginning. When fully mainstreamed, all students – with and without disabilities – can attend the school. The importance of mainstreaming is strongly supported by the EU Commission in its European Union Disability Strategy[2]
The great challenge is to make politicians, administrators, engineers, architects, educators, employers, business people and other decision-makers realise that they themselves have a responsibility for accessibility measures.
The mainstreaming project is built on some basic principles:
-human rights, meaning that all people have equal value, same rights and same obligations,
-that disability issues shall be treated as matters of human rights,
-that the best way towards human rights is through mainstreaming of disability aspects,
-that mainstreaming means that disability aspects always shall be included in all planning, implementation, monitoring, evaluation and revision on all levels of society (nationally, regionally and locally),
-that the most effective way towards mainstreaming is by structured planning,
-that the 22 UN Standard Rules give a very good structure for planning as they cover many areas of everyday life that are important to people with disabilities,
-that the Standard Rules can be used as a structure for disability policyplans, by going through rule by rule to see what kind of measures are needed.
4. Project description
In January 2005, EDF started a trans-national project called “Mainstreaming disability in regional and local policy”, with Agenda 22 as the implementation method. The project ended in December 2006.
4.1. Project’s objectives
4.1.1. Main objective
The main objective aimed at increasing mainstreaming of disability in policy making at regional and local level. This mainstreaming shall be based on a human rights approach to disability.
Such mainstreaming cannot happen without the active contribution of those directly concerned by those policies.
“States should recognize the right of the organisations of persons with disabilities to represent persons with disabilities at national, regional and local levels. States should also recognize the advisory role of organisations of persons with disabilities in decision-making on disability matter”.Rule 18 of the United Nation Standard Rules on Equalisation of Opportunities
4.1.2. Sub Objectives
To achieve this overall objective, several sub-objectives needed to be achieved:
- The creation of a cohesive cross-disability movement at regional and local level, which operates in close co-ordination with the national disability movement, which itself forms part of a European network of experts on regional and local disability policy planning.
- An adequate understanding by the disability movement and by public authorities of a human rights based approach to disability.
- Regional and local public authorities open to undertake a structured dialogue with representative organisations of people with disabilitiescovering all relevant policy areas.
- The establishment of a structured dialogue between the relevant regional and local public authorities and the representative local and regional disability organisations.
4.2. Target groups
- Organisations of people with disabilities
The first target groupwere national, regional and local organisations of people with disabilities. They had to include people with all type of impairments such as physical impairment, deaf and hard of hearing people, visually impaired, people with intellectual disabilities, mental health problems or complex and multiple disabilities.
- Regional and local public authorities
The umbrella organisations of these regional and local authorities had a key role.
- Regional and local service providers
The service providers should act in co-operation with the organisations of people with disabilities and respect the leading role of these organisations.
4.3. Participating countries / organisations
Twelve organisations participated in this project: the European Disability Forum(EDF), the Council of European Municipalities and Regions (CEMR),the Swedish Disability Federation (HSO), The National Disability Council of the Netherlands (VGPN), the Belgium Disability Forum (BDF), the Czech National Disability Council (NRZP), the Danish Council of Organisations of Disabled People (DSI), the Estonian Chamber of Disabled People (EPIK), the National Disability Council of Italy (Consiglio Nazionale sulla Disabilità, CND), the Latvian Umbrella Body for Disability (SUSTENTO), the National Council of People with Disabilities in the Slovak Republic (NROZP v SR), and the National Council of Disabled People´s Organisations of Slovenia (NSIOS).
The National Confederation of Disabled People in Greece was initially also partner to the project, but withdrew after the first expert visit (CHECK DATE) due to the impossibility to engage the local Greek disability movement in the project.
The 8 participating countries presented differences among each other in many aspects: very different levels of developmentof organisations of people with disabilities, diverse levels of awareness of disability issues, different degrees of decentralisation of decision making powers.
4.4. Method and rationale
The purpose of the project was not to elaborate a theoretical methodology. The Agenda 22, a methodology prepared by HSO (Sweden) already existed and there was no need to reinvent the wheel. Nonetheless, through dialogue with partner countries, the Agenda 22 was adapted to the specific situations of the eight participating countries.
The advantages of the Agenda 22 methodology are:
-it is very comprehensive as it covers all relevant disability policy areas;
-it is based on a human rights based approach to disability with full respect to the social model of disability;
-it is tailored to regional and local public authorities;
-a key role is given to disability organisations as equal partners in the decision making process;
-The Agenda 22 already exists in 17 EU-25 languages.
Agenda 22 is an instrument for local / regional authorities on how to implement the UN Standard Rules by drawing up disability policy plans. The method consists of three parts.
4.4.1. Characteristics of a good plan
A good disability policy plan shallinter alia:
- be based on the UN Standard Rules
- be drawn up in close co-operation with the organisations of people with disabilities
- show society as a good example
- have clear long-term objectives
- have concrete descriptions of the measures (what is to be done, when, responsible agency and funding)
4.4.2. Equal partners
The organisations of people with disabilities shall be included as equal partners in the entire policy process. This includes the planning, implementation, monitoring and evaluation when drawing up a plan.
4.4.3. From idea to disability policy plan
The planning process shall consist of the following:
- Inventory of how local authorities currently fulfil the Standard Rules.
- Inventory of the public service needs of people with disabilities.
- Compilations, analyses and priorities.
- Adoption of the plan by the supreme policy-making body.
4.5. The six steps implementation strategy of the mainstreaming project
From the beginning of the project until June 2005, the Core group- together with the steering committee - has intensively worked on defining a clear implementation strategy as detailed and concrete as possible. The aim was to provide local coordinators with a useful tool to work with local organisations of people with disabilities and public authorities.Based on the Agenda 22method, a disability policy plan as concrete as possible was to be drawn up in each pilot area. The concreteness was substantial for the project’s sustainability asthe existing working groups might lose their hope and give up if their work would not lead to concrete results.