Implementation of the United Nations Convention on the Rights of Persons with Disabilities (CRPD): Concepts and indicators for inclusive Policies? "ICF and the monitoring of the CRPD Paris, November 7, 2012 Jerome Bickenbach Schweizer Paraplegiker Forschung

Challenges of CRPD Monitoring The combined effect of Articles 31 & 33: Obstacles: to require states to develop human rights indicators and appropriate data streams to monitor CRPD implementation. I. Indicators that balance CRPD-relevance and feasibility II. Availablity of data for CRPD-relevant indicators

Article 31 Statistics and data collection 1. States Parties undertake to collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention. The process of collecting and maintaining this information shall: Comply with legally established safeguards, including legislation on data protection, to ensure confidentiality and respect for the privacy of persons with disabilities; Comply with internationally accepted norms to protect human rights and fundamental freedoms and ethical principles in the collection and use of statistics. 2. The information collected in accordance with this article shall be disaggregated, as appropriate, and used to help assess the implementation of States Parties obligations under the present Convention and to identify and address the barriers faced by persons with disabilities in exercising their rights.

Article 33 National Implementation and Monitoring 1. States Parties, in accordance with their system of organization, shall designate one or more focal points within government for matters relating to the implementation of the present Convention, and shall 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. States Parties shall, in accordance with their legal and administrative systems, 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. Civil society, in particular persons with disabilities and their representative organizations, shall be involved and participate fully in the monitoring process.

33 (1) 33 (3) FOCAL POINT Coordination Mechanism Persons with disabilities Implementation Monitoring Mechanism 33 (2) 31 DATA

Implementation Monitoring Mechanism 33 (2) 31 DATA

Standard Monitoring Scheme Rights Targets Indicators Data sources Rights Targets operationalise Rights Indicators are measurements of Targets Data sources provide data for Indicators

MDG s: Monitoring in terms of Goals and Targets

Indicators: Pour Les Nuls RIGHT Attributes of the RIGHT INDICATORS are tools for measuring the existence or extent of a State s Commitment Effort Result in the realization of each attribute of a RIGHT Structural Indicators capture the acceptance and commitment of a State to undertake measures to realize a right Process indicators assess a State s efforts to transform commitments into results Outcome indicators assess the results of the state s efforts in furthering the right enjoyment of human rights

Indicators: Pour Les Nuls Identifying Attributes of a RIGHT: Article 15 - Freedom from torture or cruel, inhuman or degrading treatment or punishment 1. No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment. In particular, no one shall be subjected without his or her free consent to medical or scientific experimentation.

Indicators: Pour Les Nuls RIGHT TO PARTICIPATE IN PUBLIC AFFAIRS (Article 21 of the Universal Declaration of Human Rights) (1) Everyone has the right to take part in the government of his country, directly or through freely chosen representatives. (2) Everyone has the right of equal access to public service in his country. (3) The will of the people shall be the basis of the authority of government; this will shall be expressed in periodic and genuine elections which shall be by universal and equal suffrage and shall be held by secret vote or by equivalent free voting procedures. STRUCTURAL INDICATOR: Ratification of International human rights treaties, relevant to the right PROCESS INDICATORS: Proportion of received complaints on the right to participate in public affairs investigated and adjudicated by the national human rights institution Proportion of vacancies in (selected) public authorities at national and subnational level filled through selection of women and candidates from target population groups OUTCOME INDICATORS: Proportion of seats in parliament, elected and appointed bodies at subnational and local level held by women and target groups Reported cases of denial of access to public service or position on account of discrimination

Indicators: Pour Les Nuls Article 15 - Freedom from torture or cruel, inhuman or degrading treatment or punishment 2. States Parties shall take all effective legislative, administrative, judicial or other measures to prevent persons with disabilities, on an equal basis with others, from being subjected to torture or cruel, inhuman or degrading treatment or punishment. Structural Indicator: Existence of legal provisions in statutory law regarding the establishment of independent authorities responsible to monitor disability programmes and facilities (YES/NO) Process indicator: Number of facilities and programmes these authorities have inspected by geographic region and type in the last 2 years. Outcome indicator: Number of institutions and programmes that comply with human rights and other quality standards as defined by these authorities.

Indicators: Pour Les Nuls Varieties of State action respecting human rights: RESPECT: States must not interfere with the exercise and enjoyment of the rights of persons with disabilities. PROTECT: States must prevent violations by non-state actors, such as individuals, businesses, institutions, or other private organizations. FULFILL: States must take positive action to ensure that everyone, including persons with disabilities, can exercise their human rights.

Right to participate in cultural life and sport (CRPD Article 30) RESPECT PROTECT FULFILL The State repeals discriminatory regulations regarding fire safety restricting access of persons using wheelchairs to theaters. The State requires sign language interpretation to be provided for a cultural event open to the public in a private museum. The State adopts a national action plan addressing a comprehensive strategy to make sporting arenas accessible to persons with disabilities as participants and as spectators.

Indicators: Pour Les Nuls STRUCTURE PROCESS OUTCOME RESPECT PROTECT FULFILL for each Attribute?

CRPD INDICATORS Obstacle: Indicators that balance CRPD-relevance and feasibility

Indicators that balance CRPD-relevance and feasibility To be CRPD-relevant, the indicator must take into account the variety and detail of CRPD rights and attributes E.g. General Values and Principles

Indicators that balance CRPD-relevance and feasibility Legal qualifications e.g. reasonable efforts appropriate steps, measures that are necessary

Attribute DETAIL Indicators that balance CRPD-relevance and feasibility

Indicators that balance CRPD-relevance and feasibility Standard Socio-economic Indicator EMPLOYMENT RATE does not capture the detail of Article 27 BUT: indicators that would capture the detail are not feasible, since we do not collect these data

European Survey on Disability and Social Integration Module (EDSIM)

CRPD INDICATORS Obstacle: Availablity of data for CRPD-relevant indicators

DATA: some simple truths Data about people is Hard to get Expensive to get Hard to interpret Open to challenges of Validity Reliability

DATA: some simple truths Sources of disability data: Censuses Thematic population surveys (health, economic & social, employment, etc) Administrative records (disability pensions, workers compensation) Research findings Event-based documentation of specific human rights violations

DATA: some simple truths PROBLEM 1 with most disability data: Impairment focus

Are you: Pakistan 1981 Census Disability Question 1. Blind 2. Deaf and dumb 3. Crippled 4. Mentally retarded 5. Insane 6. Other?

Australian Bureau of Statistics, Australia Census 2009 MAIN DISABLING CONDITIONS People may have a variety of health conditions or diseases during their lives. For some people, a long-term physical or mental health condition culminates in a disability, which makes it difficult for them to carry out certain activities. Diseases of the musculoskeletal system and connective tissue Diseases of the circulatory system Endocrine, nutritional and metabolic disorders Diseases of the respiratory system Mental and behavioural disorders

Irish Census Questions

IRISH National Disability Survey, 2006 A3 Are there any of the following aids, specialised equipment or services for persons who have a seeing disability or are blind that you NEED but do not have? Show / read list. Mark Yes to all that apply. Yes A2 Yes A3 Magnifiers [e1251] 1 1 Braille reading materials [e1251] 2 2 Large print reading materials [e1251] 3 3 Talking books [e1251] 4 4 Recording equipment or portable note-takers 5 5 Closed circuit devices, e.g. CCTV s [e1251] 6 6 A computer with Braille, large print or speech access [e1251] 7 7 A white cane [e1201] 8 8 A guide dog [e350] 9 9 Personal assistant [e340] 10 10 Carer [e340] 11 11 A home help [e340] 12 12 Other [e120] 13 13

DATA: some simple truths PROBLEM 2 with most disability data: What is measured is what is easy to measure

DATA: some simple truths PROBLEM 2 with most disability data: Collected for different purposes and not comparable

DATA: some simple truths PROBLEM 2 with most disability data: Collected for different purposes and not comparable Most countries have a variety of survey data, for different subject-matters Health surveys Social and Economic surveys Labour surveys Education surveys Administrative records Household surveys NOT COMPARABLE DATA!

The CRPD Data Challenge: To develop a true disability survey that captures the CRPD sense of disability that can link existing data from available national surveys

CRPD Article 1 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.

Article 1 physical, mental, intellectual or sensory IMPAIRMENT INTERACTION Environmental BARRIERS hinder FULL AND EFFECTIVE PARTICIPATION in society

Disability is the outcome of complex interactions between the person s impairments and the complete physical, human-built, social and attitudinal environment.

CRPD the Rights 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 ICF Participation Domains

The Role of ICF in UN Convention Implementation Monitoring Convention GOAL Article 26 Habilitation and rehabilitation 1. States Parties shall take effective and appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life. To that end, States Parties shall organize, strengthen and extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services, in such a way that these services and programmes. TARGET INDICATORS ICF code Provide comprehensive habilitation and rehabilitation services and programmes (health, employment, education and social services), to persons with disabilities that based on standards of multidisciplinary assessment of individual needs and strengths based on standards of participation and community inclusion voluntary available and communitybased Proportion of persons with disability in need of rehabilitation services, who are receiving them. Proportion of population of persons with disability in rural areas receiving necessary rehabilitation services. Data Source Household and facility surveys Administrative records