D-LoT E-Learning Course

MODULE IV
COMMUNICATION, NETWORKING,
STAKEHOLDER COOPERATION AND
INFORMATION SYSTEM
Contents
LEARNING OUTCOMES: .............................................................................................................. 2
KEY MESSAGES OF THE MODULE ............................................................................................... 3
IV.1 The role of cooperation in service provision ...................................................................... 3
IV.1.1 The need for cooperation............................................................................................. 3
IV.1.2 A short history of human rights ................................................................................... 6
IV.1.3 Benefits of cooperation ................................................................................................ 7
IV.1.4 Areas of cooperation .................................................................................................... 7
IV.1.5 Key factors for successful cooperation ........................................................................ 8
IV.1.6 Key factors of a successful cooperation process.......................................................... 9
IV.1.7 Forms of cooperation ................................................................................................. 10
IV.2 Networking and stakeholder cooperation mechanisms ................................................... 10
IV.2.1 Development of networks .......................................................................................... 10
IV.2.2 Fundamental choices ................................................................................................. 10
IV.2.3 Instruments ................................................................................................................ 11
IV.2.4 Lessons learned .......................................................................................................... 11
IV.2.5 Actions when developing a stakeholder approach .................................................... 11
IV.2.6 Examples for European Networks (1/7) ..................................................................... 12
IV.3 The information system in the field of social services for persons with disabilities ........ 14
IV.3.1 Information persons with disabilities need................................................................ 15
IV.3.2 Success factors for an integrated information system .............................................. 15
IV.3.3 Accessible formats...................................................................................................... 16
IV.4 Data collection, information flow and feedback mechanisms ......................................... 16
IV.4.1 Why collect data about disability? ............................................................................. 16
IV.4.2 Disability measurement ............................................................................................. 17
IV.4.3 CRPD monitoring and implementation ...................................................................... 18
IV.4.4 a standard monitoring scheme .................................................................................. 19
IV.4.5 human rights indicators ............................................................................................. 19
IV.4.6 Improvements of disability data or statistics ............................................................. 21
BIBLIOGRAPHY/RECOMMENDED TEXTS .................................................................................. 23

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AUTHOR:
Franz Wolfmayr, president of EASPD

LEARNING OUTCOMES:
A. (Knowledge) By the end of the course, participants will be able to recall:
a. Positive effects of cooperation and networking in the field of social services
b. Key factors for success in cooperation and networking
c. Positive examples of networks of social services in Europe and in the member
states
d. The typology of partners and stakeholders
e. Which information is needed to be able to provide services for individuals as
well as to provide service systems for regional needs
f. The approaches of data collection and their advantages and shortages
g. The responsibilities in data collection and statistics of the UNCRPD
B. (Skills) By the end of the course, students will be able to:
a. Organise cooperation between social service providers and stakeholders
b. Start networks in the field of social services
c. Build a strong, sustainable and trustful cooperation with each partner and
stakeholder
d. Develop a data collection system for the own services providing organisation
e. Provide information about the services available in the own region
f. Use human rights indicators when developing a comprehensive and
integrated information system
C. (Attitudes) By the end of the course, students will:
a. Value cooperation and networking in service provision and be willing to invest
b. Know, that investing time in cooperation and networking is good invested,
even if the outcomes are not always visible in the short-term
c. Know, that cooperation in service provision is necessary because clients’
needs are complex and co-production is a concept of the future when
organizing social services
d. Value the important role of an integrated system of information when
providing services for persons with disabilities as a tool for improved decision
making, control and better quality of services for persons with disabilities.
e. Challenge the statistic and information system in the country to enable
persons with disabilities to realize their right to participate in society

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KEY MESSAGES OF THE MODULE
As service providers we strive to deliver high-quality services promoting the full
participation and inclusion in society of all persons with disabilities. We believe that support
services play a key role in enabling people to enjoy their human rights on an equal basis,
beyond disability or any other factor. Believing that, cooperation and networking in the field
of social service provision are necessary.

There are political reasons: to represent the sector, to stand for transparent and sustainable
legal frameworks and to influence society positively for living in the community.

And there are quality reasons: to provide services according to the needs of persons with
disabilities and to stand for users’ rights cooperation of different service providers is
indispensable. We have to create a network of support around individual clients.

To be able to improve decision making, control and the quality of services for persons with
disabilities organizations need an integrated system of information. Also the UNCRPD obliges
state parties to implement such systems. The way in which the information about users,
services and decision makers is structured and organized represents therefore a key
regulatory mechanism for the services system itself.

IV.1 The role of cooperation in service provision

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IV.1.1 The need for cooperation
Modernisation of services and stakeholders cooperation
Services are changing from institutional settings to services provided in the community, from
standardized types of services to individually and co-produced types of services.

“In the disability field, co-production is an inclusive working practice between experts by
experience (users), organisations being of support, public authorities and, if relevant,
families and other stakeholders. The ultimate goal is the delivery of a service, policy or
activity that is responsive to the user’s needs and preferences in line with the principles of
the UN Convention of the Rights of Persons with Disabilities. Through co-production all
stakeholders are empowered and are empowering as they are continuously involved in the
design, development and delivery of the service, policy or activity. Co-production allows

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See also handout of handicap international regional expertise program in the field of social services for people
with disabilities / South Eastern Europe 2007 – 2009; introduction to module 6 „stakeholder`s cooperation and
Information Systems in the field of services for persons with disabilities“. Link to handout

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users to be in control of their lives, while taking ownership and expressing choice through
active and meaningful partnerships”.

EASPD proposes three main elements for co-production in the disability field:
1. Co-production promotes the idea of shifting the balance of power and responsibility
solely from professional support services and authorities. It also establishes that all
stakeholders are integral to the policy, service or activity, developed in equal
partnership with persons with support needs as the drivers.
2. Coproduction recognises that every individual with support needs should be fully,
structurally, meaningfully and in an ongoing manner involved at all stages in the
design, development and delivery of the relevant service, policy or activity. It
requires all stakeholders to acknowledge and recognise the expertise, desires, will
and preferences of the person with support needs.
3. Co-production is an innovative working practice ensuring that all stakeholders
actively rethink and reassess how they are currently operating. Shared dialogue,
jointly agreed outcomes, fully inclusive environments and reasonable
accommodation must become an essential part of their work structures.

To modernize the services and the legal frameworks there is a need to develop co-
production, reinforcing the cooperation between all involved stakeholders.

The role of civil society actors in policy development

The EU and their member states should consider the role of civil society organisations as
crucial to have modern and democratic societies. To make that happen, the social sector as a
whole has to organise itself to be able to take an active role in policy-shaping and decision-
making. “Policies will be more successful if they are based on consensus, and work in the
general interest. This helps the wider public to understand and engage with decisions, and
therefore to implement them more effectively.”

The socio-political context

The way social service providers co-operate, the content and form of co-operation depend
to a great extent on the social-political framework, in which they are embedded.
Nevertheless one common organizational scheme of social services is the so called triangle
between state, client and service providers.

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 STATE

USERS PROVIDER

 The users of social services : in our case, persons with disabilities (and eventually
their families or legal representatives);
 The social service providers, both public and private;
 The State, which usually plays a regulatory role.

Along with these three categories, many other stakeholders participate to the process:
media, donors, civil society groups and organisations, professional groups, universities,
schools and training providers etc. However, from the point of view of the organisation of
service provision (and regulatory mechanisms), these three categories of stakeholders and
the relationship between them are essential.

Who are usually these stakeholders?

 When we speak about the State, we usually refer to:
o National authorities (ministries, national commissions, national inter-sectorial
committees etc.);
o Local and regional authorities (either decentralised bodies of the ministries –
like school inspectorates, Centres for Social Work, Local Directorates for
Health etc. – or local and regional elected authorities);
 When we speak about the social service providers, we usually refer to 5 different
categories:
o Public providers (those who are entirely paid from the state budgets);
o Not-for profit organisations providing social services (charities, NGOs, etc.);
o Individual persons being hired as personal assistants on the basis of direct
contracts with persons with disabilities;
o For-profit companies providing services;
o “Informal” providers (like families or volunteers).

The last four categories mentioned above can be grouped under the label of “private
providers”.

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The co-existence of a plurality of providers in one country became an acknowledged feature
of modernisation of the social sector and it is described with the term “welfare mix”.

 When we speak about the users of social services, in the disability sector, we usually
refer to:
o Persons with disabilities (children, young adults or adults);
o Persons with disabilities who are facing multiple vulnerable or at-risk
conditions (poverty, gender or ethnic-related discrimination, people affected
by HIV and AIDS, people who are exploited or abused etc.);
o Families or legal representatives of persons with disabilities;
o Communities at large, when services are addressing as well changes of
attitudes, perspectives or practices related to disabled persons and their daily
life.

IV.1.2 A short history of human rights

With European society struggling to balance social rights with budget cuts in the face of the
lingering economic crisis, the disability sector finds itself at a crossroad. The coming years
will be decisive in shaping the social support services sector of the future, and no
organization can do it alone. Cooperation and networking have to be developed at all levels
to pave the way for an inclusive society where persons with disabilities can fully enjoy all
their rights, and if needed, be supported by community-based services.

The European Union and almost all Member States have signed and ratified the UN
Convention on the Rights of Persons with Disabilities. This decision opens new pathways to
inclusion and should make our societies more cohesive.

Disability in this convention is no longer seen as an attribute of a single person but should
rather be understood as the responsibility of society as a whole, in every area of life.
Frameworks which guarantee the participation of each person in every aspect of life are the
social challenges which all governments now have to take up-work on.

Many social service providers for persons with disabilities are specialized and have a vast
experience in designing appropriate frameworks. One of the objectives for them is now to
promote and expand on these best practices and experiences with society as a whole.

As an example: EASPD developed and is implementing a new strategic orientation -

"Reaching out strategy – to build an inclusive society"2. It introduces a new approach

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Link to Reaching out strategy – to build an inclusive society

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designed to focus on further reaching out towards persons with disabilities, members and
allies as well as towards other stakeholders such as the European institutions. The strategic
decisions and measures decided to implement are converted into concrete actions in the
annual action plans for 2014 to [Link] this document, EASPD has once again
positioned social service providers as enablers of human rights for persons with disabilities.

IV.1.3 Benefits of cooperation

To share Knowledge
There are many areas of knowledge which are important for service provision:
 Special needs of clients
 Funding opportunities
 Legal frameworks
 Organization of services and enterprises
 Human resources management
 Other...

Funding regulations
 Strong funding regulations for the whole sector and not only for single service
providers
 Such regulations are transparent, more sustainable and mostly on the basis of a
general contract

Human Resources Management (HRM)

 general regulations about staff education and staff training in the sector
 better and cheaper programs for staff training for the sector
 development of adaptation strategies in times of crisis

Representation
 Certain types of services (Supported Employment, Work Integrating Social
Enterprises (WISE), early intervention, housing, education, …)
 The sector of social services

Process: tailor made services

 Persons with disabilities have individual needs. Therefore, service providers should
provide individual support services in cooperation with other organizations

IV.1.4 Areas of cooperation

 Gathering and keeping knowledge and provide it for members (knowledge transfer)

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  Becoming a political representative of the social services sector (lobby work) to
negotiate legal frameworks, funding systems, staff education and training, public
relations and raise awareness among society, …

IV.1.5 Key factors for successful cooperation

 Leadership
 Political climate
 Common understanding among stakeholders
 Communication (internal and external) - knowledge transfer
 Sustainability
 Resources
 Participation
 Evaluation, monitoring and continuous improvement of the collaborative work and a
history of successful performance

Leadership
There is a need for leaders who encourage, facilitate and maintain collaboration; they are
committed to the common goals and values; they value diversity and they enhance the
individual, group and organizational strengths. They give the focus and direction for
cooperation. A particular role is the one of catalysts – they are the ones who enhance (or
begin) the collaboration as a consequence of the existence of the problem(s).

Political climate
There is a positive environment and history of power and decision-making, which underlines
the importance of the role of each stakeholder. The existence of policies / laws / regulations
that can sustain and clarify the means of cooperation – this is equally important. If they do
not exist, their creation represents a priority for the disability sector.

Understanding the stakeholders

The understanding of the various interests and specificities of actors, cultures, values and
habits

Communication
Clear and open, with established procedures and clear chains of decision making and
exchange of information.

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Sustainability
There is a plan for the conservation of participation and resources throughout projects,
including guidelines for replacement of members within various collaborative bodies and
multi-stakeholders agencies.

Resources
For a successful collaboration among actors, there is a need for resources (time of actors, as
well as resources for communication and collaborative decision making, for exchanging
information and tools, etc.).

Participation
Actors have to be pro-active and participate in this collaborative process. There are always
different patterns of participation visible within a group, and these patterns (or profiles)
need to be rapidly acknowledged and used in the best direction possible for the common
interest of the process or the group work.

Evaluation, monitoring and continuous improvement of the collaborative work

An assessment of needs is made, the objectives are clear, and there are measures in place to
collect information and investigate these goals.

History of successful performances

The collaborative work is always motivated by success and good practice examples. Their
promotion and dissemination could stimulate further cooperation, and also provide lessons
learnt and levers for improvement.

 Using the factors described above may reduce the fragmentation within the different
interests group and might support the move from debate to dialogue. It also helps
with the understanding of the issues and problems in a holistic manner.

IV.1.6 Key factors of a successful cooperation process

Successful cooperation means to have common agreements about the action.

There are three main areas for such agreements:

1. Goals: Common agreed goals on a short, medium and long term

2. Planning: coordination of the plans - how to achieve the goals
3. Value orientation: the values behind.

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This concept of cooperation is valid for cooperation between organisations as well as for
cooperation between persons (also with clients in service provision) in a co-produced
process.

IV.1.7 Forms of cooperation

 Cooperation with decision makers and regulators - (Public-private partnership,
public procurement … )
 Cooperation with other service providers - Different modalities of cooperation
between service providers for ensuring the continuity of services: European, national
“providers’ forum”, regional and local cooperation.
 Cooperation with other sectors of society - (fields of intervention)
Employers, Education sector, housing…
 Cooperation with persons with disabilities (users) and their families -
Users’ involvement in the development, provision, monitoring and evaluation of
services,
 Cooperation between service providers and international agencies -
to ensure a continuous modernization of services for persons with disabilities.

IV.2 Networking and stakeholder cooperation mechanisms

1. Development of networks
2. Fundamental choices
3. Instruments
4. Lessons learned
5. Actions when developing a stakeholder approach
6. Examples of European networks

IV.2.1 Development of networks

In network developments we can identify phases:
1. From ‘competition’ to partnership
2. From person driven towards mission oriented
3. From abstract values towards concrete objectives to
4. From board level towards first line staff

IV.2.2 Fundamental choices

From the beginning, each network has to decide about:
 Support on the core business
 Knowledge & know-how delivery
 Economy of scale

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  Shared values
 The role in Social Economy

Potential members need to know about the added value being a member of the network.

IV.2.3 Instruments
 Mission statement
 Strategic objectives
 Concrete aims
 Action plan / annual report
 Mandate
 Protocols

IV.2.4 Lessons learned

Structural dimension:
 Be there
 Secure consensus
 Keep rhythm and direction
 Need is the mother of invention

Conceptual dimension:
 Be absent
 Make difference explicit
 Hop skip jump: exploring, elaborating, concluding
 “united in diversity”
 Adopt the culture
 Represent Social Economy

Operational dimension:
 Mandate!
 Let figures talk
 Words motivate, examples activate
 Recognize and ignore territories
 Follow the procedure

IV.2.5 Actions when developing a stakeholder approach

Stakeholder management: bring into balance the different perspectives of the different
stakeholders

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  Map the expectations of the various stakeholders (aims & objectives)
 Select a dialogue technique (letters, telephone contact, hearing, structural contact…)
 Organise feedback: do people agree with what you identified as needs and the
dialogue method?
 Implementation of outcomes (of the dialogue and feedback)/ weight of the input,
value of the opinion/ advice/ decision/ co-decision of a stakeholder
 Develop indicators to measure in what way the outcomes were implemented

IV.2.6 Examples for European Networks (1/7)

At European level, there are several “umbrella” (federations of associations) non-
governmental organisations (NGOs) that have an important role – a say. 3 examples:
 Inclusion Europe
 European Disability Forum
 Mental Health Europe

Inclusion Europe – The European Association of Persons with Intellectual Disabilities &
their families
- Formally established as a non-governmental organisations in May 1988
- Committed to advancing the human rights and defending the interests of people with
intellectual disabilities and their families in Europe/
Structure of the organisation
- Part of Inclusion International and counts 31 members and networks in 30 countries
- Inclusion International was founded in 1960 and fights for human rights and social
justice for people with intellectual disability and their families- close partner of the
United Nations and its agencies
Main objectives:
- Enhance the opportunities for people with an intellectual disability and their families
to live as true European citizens - right to equal opportunities and participation in
economic and social development
- Encourage collaboration & exchange of information between member societies
across Europe
- Co-operate with like-minded organisations in the fight for social justice and to
improve human rights.
Activities:
- A wide range of activities in both the EU MS & Central & Eastern European countries
conferences
- Working groups, training sessions, and other information on relevant topics

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 - Compares legislation & services throughout Europe and encourages best practice to
improve the lives of all people with an intellectual disability & their families

More information available on Inclusion Europe website

European Disability Forum

EDF-represents the interests of 37 million disabled people

Mission:
To advance disabled people’s human rights and promote equal opportunities in EU
policies in accordance with the principle of non-discrimination

Structure of the organisation:

- 68 organisations working at European level
- 29 National Councils representing the national disability movement from each
European Economic Area (EEA)

Main objectives:
- To promote disabled people’s human rights and equal opportunities
- To combat discrimination and social exclusion in all EU policies in accordance with
the principle of mainstreaming and a social model of disability
- To increase the visibility of the 10% of the population with different types of
impairment
- To encourage the participation of disabled people’s representative organisations in
civil dialogue-at all levels-in particular with EU institutions & other international org.

Activities:
- EDF campaigns for policy change & plays a key role in information exchange with
European disability movement
- Strengthening non-discrimination legislation, in employment and other areas of
Community competence –according to the principle of mainstreaming: transport,
information society, social protection...
- Equal opportunities for disabled people in employment & education...

More information available on EDF website

Mental Health Europe

MHE-SME, as an advocacy and educational E-NGO, promotes the mental health of people in
all its aspects: social, education, medical and biological

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Structure of the organisation:
Members are organisations and individuals from all over Europe with different kinds of
mental health interests, experiences, expertise and responsibilities who form an equal
partnership.

- The membership includes user organisations, volunteers and professional

organisations working at the regional, national and European level.
- MHE currently has about 73 member organisations in 30 European countries.

Main objectives:
- The promotion of positive mental health;
- The prevention of mental distress;
- The protection of human rights of mental health services, patients of psychiatric
hospitals, their families, and carers;
- To develop policy positions on mental health issues in consultation with its
membership;
- To lobby and influence key decision making on European mental health issues.

Activities:
- Promotes and supports its member organisations through information and
consultation
- Develops and formulates policies and strategies on mental health issues
- Initiates co-operation and communication between stakeholders in mental health
- Identifies and disseminates good practices in mental health
- Provides information on eu matters in mental health
- Increases awareness for mental health and campaigns on important issues
- Organises meetings, seminars, conferences and workshops
- Negotiates on mental health with all relevant European bodies

More information available at Mental Health website

IV.3 The information system in the field of social services for persons
with disabilities
An Information system refers to a set of methods and mechanisms to monitor, collect,
create, store, process, and distribute information. This process is used to monitor the overall
regulatory framework, influencing the decision making and adaptability of the system to the
changing needs of actors in the process.

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All stakeholders involved in the provision of social services (service providers, users,
authorities and gate keepers etc.) should contribute to the correct maintenance of the
information system. The biggest challenge of the system’s creation is the acceptance and use
of information technology in the social sector.

IV.3.1 Information persons with disabilities need

 Information about policies and legal frameworks, in relation with service provision,
entitlements, accredited providers, disability classifications etc.;
 Information about users: coordinates, socio-economic data, expressed needs for
services and disability-related support etc.;
 Information about service providers: localization, offer, quality control, structure of
the staff, internal statistics (unit costs, number of customers, measurable results
etc.);
 Information about gate-keepers and/or local “focal points” in the field of service
provision;
 Information about the entitlements and available support services, at local and
national level;
 Waiting lists per categories of services and the situation of available places in the
system;
 Other relevant information that helps local and national agencies to improve the
provision and coordination of services for persons with disabilities.

The way in which information systems are available and structured can contribute to
improved decision making, control and better quality of services for persons with disabilities.
Comprehensive and integrated systems contain all the relevant information listed above.

IV.3.2 Success factors for an integrated information system

At political level: Sharing a common vision on interoperability and considering it as a motor
for growth, development and innovation;

At the level of the concrete design of the information system:

 Choice of concepts and semantic blocks that will ensure interoperability among
different actors like providers, gate-keepers, regulators, users;
 Transparency and traceability of the information;
 Clear guidelines for all actors whom are in charge of fueling the system with
information;
 Privacy rules;

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  User-friendly interfaces and programs that allow easy-to-use procedures for all
actors involved in alimenting the system with data, and using this data.
 Use accessible formats such as easy to read texts and sign language interpreters for
persons with special communication needs

At the level of the management of the information system:

 The concrete design of the agency in charge of the information system;
 The strategy behind this agency, with coordination role (common goals for all
members of the network, tools for information exchange, monitoring and
improvement of the system, accountability etc.);
 The concrete design of the portal for public information;
 The concrete modalities and responsibilities for the maintenance of the information
system.

IV.3.3 Accessible formats

Easy to Read
 To be able to use the available information it has to be written in an understandable
way for all users, including persons with intellectual disabilities. When preparing easy
to read information you have to answer some questions in advance, like who is the
audience you want to reach.
 The texts are combined with symbols and pictures.
 Web, print and environmental accessibility

There are a lot of useful handbooks available. You find the link to several handbooks at the
end of the handout in the bibliography.

IV.4 Data collection, information flow and feedback mechanisms

1. Why collect data about disability?
2. Disability measurement
3. CRPD monitoring and implementation
4. a standard monitoring scheme
5. human rights indicators
6. Improvements of disability data or statistics

IV.4.1 Why collect data about disability?

1. The big number: up to 15% of European population live with a disability
2. For epidemiological and demographic use like censuses and population surveys
3. For the use of health systems and Public Health like population health survey,
administrative data, disability surveys, research

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 4. For the use of social systems: social protection, education, employment,
transportation, housing, communications, and so on… like social and socioeconomic
surveys, research
5. For the monitoring of human rights like CRPD monitoring and the preparation of the
national reports to the UN committee (check the reports of your country on the
website of the UN!). Since EU has also signed and ratified the CRPD this is also a duty
of EC
6. Without data, information and qualitative evidence
 no way to identify and assess needs, restrictions and limitations associated with
disability
 no idea of the extent of the problem, the resources required
 no social justification for resource allocation
 no systematic social response to needs or restrictions
 No implementation of human rights!

IV.4.2 Disability measurement

Main types of data collection:
1. Population Census: advantage of providing complete population coverage but
difficult to collect accurate information about disability in a census because of time
constraints.
2. Sample surveys: opportunity to ask more detailed questions about a population; may
be an independent survey focusing entirely on disability
3. Administrative collections and registers: part of the normal operation of services or
programs; i.e. information found on a client intake form. Provides useful information
on the characteristics of people accessing disability services as well as details about
the services provided; cannot give an accurate measure of disability prevalence and
tend to incorporate double counting. Quality of data is closely related to the quality
of the administrative system, especially how closely the concepts align with the
disability concepts of interest.

Approaches to disability measurement:

1. Impairment approach: relies entirely on the Body Functions and Structures;
components concerned with health related problems; it is very common,
straightforward and on naive and purely medical conceptions of disability. As
questions about impairment strike respondents about their medical condition rather
than their day – to – day lives, there is a tendency for impairments to be under-
reported.

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 2. Environmental factors approach: environmental factors can hinder or facilitate
functioning; can give information on the effect of participation; are less common
than other kinds of questions. No information about prevalence of disability but can
give useful information about the experiences of persons with disabilities; most
questions relate to need for and receipt of assistance, including elements from the
Products and Technology, support and Relationships and Services, Systems and
Policies.
3. Comprehensive approach3: as each of the other approaches is unable to provide
data needed for a valid measurement of disability prevalence. Valid disability
prevalence data must arise from information on actual restrictions on an individual`s
performance of actions, tasks and social roles in the actual physical, social and
attitudinal environment in which that person lives. On the other hand also
information on impairments and limitations in a person’s capacity are needed. To
explain disability in an individual case and to explain disability prevalence in a
population, these data are essential. Therefore we need a comprehensive approach
which is multidimensional and covers the full range of disability experience.

IV.4.3 CRPD monitoring and implementation

In article 33 of the CRPD state parties are obliged
1. In accordance with their system of organization to designate one or more focal
points within government for matters relating to the implementation of the present
Convention, and to give due consideration to the establishment or designation of a
coordination mechanism within government to facilitate related action in different
sectors and at different levels.
2. In accordance with their legal and administrative systems to maintain, strengthen,
designate or establish within the State Party, a framework, including one or more
independent mechanisms, as appropriate, to promote, protect and monitor
implementation of the present Convention. When designating or establishing such a
mechanism, States Parties shall take into account the principles relating to the status
and functioning of national institutions for protection and promotion of human
rights.

3
The Ethiopian Disability Action Network developed « Guidelines for Disability Data
Collection Tools and Measurement », which is a comprehensive study on Data collection in
the field. You find the link in the bibliography at the end of the handout.

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 3. To involve civil society, in particular persons with disabilities and their representative
organizations to participate fully in the monitoring process.

IV.4.4 a standard monitoring scheme

The purpose of the CRPD is (described in article 1) 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.

Persons with disabilities include those who have long-term physical, mental, intellectual or
sensory impairments which in interaction with various barriers may hinder their full and
effective participation in society on an equal basis with others.

From words to implement the CRPD states need to implement a standard monitoring
scheme including
 the rights to determine the goals
 the goals
 the targets to operationalise the goals
 the indicators for measuring the structural, process and outcome targets and
 data sources to provide measurement data

IV.4.5 human rights indicators

“A human rights indicator is an indicator of what to measure in order to determine the
extent to which a human right is being fulfilled or implemented in a given context”

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Problems:
 Most data on disability is collected with the focus on impairment or medical
condition
 with the social model of disability data on impairments and medical condition do not
answer the question of individual disability and support needs
 data are not comparable across Europe

The Rights covered by the UNCRPD

 Article 9: Accessibility
 Article 11: Situations of risk and humanitarian emergencies
 Article 12: Equal recognition before the law
 Article 13: Access to justice
 Article 15: Freedom from torture, cruel…degrading treatment or punishment
 Article 16: Freedom from exploitation, violence and abuse
 Article 17: Protecting the integrity of the person
 Article 18: Liberty of movement and nationality
 Article 19: Living independently and being included in the community
 Article 20: Personal mobility
 Article 21: Freedom of expression and opinion, and access to information
 Article 22: Respect for privacy
 Article 23: Respect for home and the family
 Article 24: Education
 Article 25: Health
 Article 26: Habilitation and rehabilitation
 Article 27: Work and employment
 Article 28: Adequate standard of living and social protection
 Article 29: Participation in political and public life
 Article 30: Participation in cultural life, recreation, leisure and sport

There are special challenges with human rights indicators:

 We need qualitative indicators for example to measure the big value of “dignity”.

“When you are with others do you believe that you are being treated with respect and
dignity?”
 We need proxy indicators for example to measure article 12 “equal recognition
before the law”. “Processes in place for a person to perform representative legal
actions (e.g. bring a complaint, enter a contract) on the equal basis of others who
have full legal capacity.”

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  We need indicators to measure progressive processes.

Example of human rights indicators: ANED, the European network of European Disability
Experts
Indicators of disability equality 2009:
1. Disability rates / Demographics
2. Personal and family life
3. Choice and control
4. Access to goods and services
5. Education and lifelong learning
6. Work and employment
7. Income and poverty

Choice and control

1. Proportion of disabled women and men who live in private households
2. Proportion of disabled people living in residential institutions
3. Expenditure on social support for disabled people to live at home
4. Expenditure on residential institutional provision for disabled people
5. Enough help with personal care and household activities
6. Home care services for disabled people
7. Number of people receiving personal or individual budgets for independent living
(Administrative data)
8. Voting participation in general elections compared to general population
9. Active political participation
10. Proportion of disabled Parliamentarians

IV.4.6 Improvements of disability data or statistics

The Conference of States Parties to the Convention on the Rights of Persons with
Disabilities in her eighth session came up with a comprehensive list of recommendations to
improve the use of data and the collection of data.

As way forward the conference proposes i.e.:

 It is crucial to determine the types of interventions required.
 Disability measurement at the national level could be further improved through the use of
a common set of concepts, definitions, standards and methods, such as those being
developed and tested by the Washington group, UNICEF and who/world bank. Significant
efforts are required to implement and incorporate these methodologies into ongoing data
collection activities.

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 Focal points at the country level, responsible for coordinating and disseminating efforts to
improve disability data collection will contribute to strengthening global and regional
capacity-building activities.
 Qualitative information should also be sought, collected, analysed and used to
complement quantitative data. This will help to provide a fuller understanding of disability
and human functioning.
 Additional data collection tools should also be pursued over the medium term to obtain
information on perceptions and attitudes. The collection of information on structural
characteristics, for example on the characteristics of school facilities or roads as they relate
to persons with disabilities, should be encouraged.
 For a longer-term goal, states parties may consider establishing an integrated data system
comprising disability/functioning data in administrative and census and population survey
collections (including the new methodologies, such as the model disability survey in regular
five-year cycles.
 Persons with disabilities and their organizations should be included in ongoing and future
efforts to improve national statistics and research data; on the establishment of any data
collection/monitoring framework; ensuring that dissemination of data is provided in
accessible formats; and consultation with persons with disabilities in the analysis and
reporting of research data.

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BIBLIOGRAPHY/RECOMMENDED TEXTS
 AccessAbility. A practical handbook on accessible Graphic Design
 Andreas Riege, Nicholas Lindsay, (2006) "Knowledge management in the public
sector: stakeholder partnerships in the public policy development", Journal of
Knowledge Management, Vol. 10 Iss: 3, pp.24 - 39.
 Borden and Perkins; Assessing Your Collaboration: A Self Evaluation Tool; 1999.
 Conference of state parties on the Rights of Persons with Disabilities, 8th. Session;
Improvement of disability data and statistics: objectives and challenges
 Documents related to the UNCRPD of the EC
 EASPD “Reaching Out” Strategy
 Guidelines for Disability Data Collection tools and Measurement
 Handicap International; The role of an integrated system of information in the
process of service provision, Document developed in the training program, 2009
 Hogue, T., Perkins, D., Clark, R., Bergstrum, A., Slinski, M., & Associates Collaboration
framework: Addressing community capacity. Columbus, OH: National Network for
Collaboration; 1995.
 Indicators for monitoring the CRPD – side event during the 13th. session of the
committee on the rights of persons with disabilities
 Make it easy – a guide to preparing easy to read information
 Report on the Implementation of the UNCRPD by the European Union
 Reports of the state parties to the UN
 The role of civil society in policy development
 UN CRPD (article 8 “awareness raising” + article 32 “International cooperation” and
article 9 “accessibility” – access to information)
 United Nations Expert Group Meeting on Disability Data and Statistics, Monitoring
and Evaluation: The Way Forward, a Disability Inclusive Development Agenda
towards 2015 and Beyond. UNESCO Headquarters, Paris (8-10 July 2014)
 Web Content Accessibility Guidelines (WCAG)

END OF HANDOUT

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