Autism & Human RightsAutism & Human RightsUnderstanding & Understanding &

Safeguarding the Rights of Safeguarding the Rights of People with AutismPeople with Autism

Evelyne FriedelEvelyne FriedelAutism EuropeAutism Europe

Autism & ASDAutism & ASD

• Autism is a significant, Autism is a significant, lifelong disabilitylifelong disability, affecting , affecting all forms of communication and social interaction all forms of communication and social interaction with other people and with the worldwith other people and with the world

• The prevalence of autism is 1 case in 110-150 The prevalence of autism is 1 case in 110-150 people, i.e. around people, i.e. around 6 millions persons with 6 millions persons with autism in Europeautism in Europe

• The degree of autism varies along a dimension of The degree of autism varies along a dimension of severe to mild, although its effect on personal severe to mild, although its effect on personal functioning in daily life is always seriousfunctioning in daily life is always serious

• The majority of persons with Autism or another The majority of persons with Autism or another Autism Spectrum Disorder (ASD) have learning Autism Spectrum Disorder (ASD) have learning disabilities and challenging behaviordisabilities and challenging behavior

People with autism are rights People with autism are rights holdersholders• Because of the Because of the complexity of their needscomplexity of their needs, people , people

with autism represent a with autism represent a particularly excluded particularly excluded populationpopulation, even among disabled populations , even among disabled populations themselves themselves

• Some people with autism may have high or complex Some people with autism may have high or complex dependency needs:dependency needs:

• Assistance in the activities of daily livingAssistance in the activities of daily living

• Need for a high level of supportNeed for a high level of support

• Intensive educationIntensive education

• Continuing assistance for safety purposeContinuing assistance for safety purpose

• As a general rule, aside of the fact that people with As a general rule, aside of the fact that people with autism must benefit from the same human rights, they autism must benefit from the same human rights, they may need a may need a right to compensation of their disability of their disability

Mainstreaming & Positive Mainstreaming & Positive measuresmeasures

• For people with high or complex dependency needs, For people with high or complex dependency needs, the mainstreaming approach may be either an the mainstreaming approach may be either an inadequate response or only a partial response to inadequate response or only a partial response to cover their needscover their needs

• The fundamental rights of these people are rarely The fundamental rights of these people are rarely effective if positive measures are not adopted, if effective if positive measures are not adopted, if compensation is not effectively granted and put in compensation is not effectively granted and put in placeplace

Effectiveness of rightsEffectiveness of rights

• Definition of the Definition of the individualindividual project of life, adapted, project of life, adapted, flexible, flexible, evaluatedevaluated all life long, taking into all life long, taking into account the account the needsneeds and and desiresdesires of the person of the person

• Definition of this project under the so called rights Definition of this project under the so called rights based approach, i.e. compensation based on each based approach, i.e. compensation based on each of the fundamental rightsof the fundamental rights

• QualityQuality of life, all life long under a global approach of life, all life long under a global approach for the person, not for the societyfor the person, not for the society

• Needs are not standard – Situations are complex Needs are not standard – Situations are complex and diverseand diverse

Right to early diagnosisRight to early diagnosis

• Early and systematic identification permits Early and systematic identification permits

• not only an early and accurate diagnosis not only an early and accurate diagnosis

• but also, the introduction of early but also, the introduction of early interventionintervention

• to reduce the degree of disability and to reduce the degree of disability and prevent the aggravation of the disabilityprevent the aggravation of the disability

• Right to have a diagnosis based on international Right to have a diagnosis based on international classifications (ICD 10)classifications (ICD 10)

Right to receive adapted careRight to receive adapted careall life longall life long

• People with autism must have access to appropriate People with autism must have access to appropriate care and treatmentcare and treatment

• not only for their mental health, not only for their mental health,

• but also for their physical healthbut also for their physical health

• Ordinary and common treatment must be performedOrdinary and common treatment must be performed

• Right to benefit from disease control and prevention Right to benefit from disease control and prevention programsprograms

Treatment limited to needsTreatment limited to needs

• Right not to receive any inappropriate and/or Right not to receive any inappropriate and/or excessive medication excessive medication

• No permanent treatment or medical care, unless No permanent treatment or medical care, unless indispensableindispensable

• No abusive or inappropriate recourse to irreversible No abusive or inappropriate recourse to irreversible means of contraceptionmeans of contraception

Right to Life Long EducationRight to Life Long Education

• States must guarantee an effective exercise of their States must guarantee an effective exercise of their right to educationright to education

• in mainstream schools in mainstream schools

• in special schools in special schools only ifonly if inclusion in mainstream inclusion in mainstream schools is not possible schools is not possible andand if this decision is agreed if this decision is agreed with the parentswith the parents

• Special schools must be linked with mainstream Special schools must be linked with mainstream schoolsschools

• transition between mainstream and special schools transition between mainstream and special schools must be encouraged because the child’s situation must be encouraged because the child’s situation may require bothmay require both

Adapted education Adapted education • Apart from teaching academic skills, education of Apart from teaching academic skills, education of

people with autism must includepeople with autism must include

• preparation for an independent lifepreparation for an independent life

• adaptive behaviors and social skillsadaptive behaviors and social skills

• Adaptive skills are critical factors in determining the Adaptive skills are critical factors in determining the supports the person requires for success in school, supports the person requires for success in school, work, community, and home environmentswork, community, and home environments

Education of adultsEducation of adults

• Adult education should provide the maximum Adult education should provide the maximum range of opportunities and include range of opportunities and include

• not only special education or participation in not only special education or participation in mainstream adult educational programs mainstream adult educational programs

• but also training in basic skills, self-but also training in basic skills, self-management, living skills, at all ages (no management, living skills, at all ages (no retirement)retirement)

Right to workRight to work

• Adjusting the working conditions to the needs of Adjusting the working conditions to the needs of the disabled person in the ordinary working the disabled person in the ordinary working environmentenvironment

• Where this is not possible by reason of the Where this is not possible by reason of the disability: arranging for or creating sheltered disability: arranging for or creating sheltered employment according to the level of disabilityemployment according to the level of disability

• In certain cases, such measures may require In certain cases, such measures may require recourse to specialized support services recourse to specialized support services

• Principle: possibility of a true career with flexible Principle: possibility of a true career with flexible transitions to and from the ordinary environmenttransitions to and from the ordinary environment

Access to private housing Access to private housing & to private life & to private life

• Full integration and participation in the social life of those Full integration and participation in the social life of those who are the most dependent and disabled requirewho are the most dependent and disabled require

• Closing large institutions Closing large institutions

• Living at home as independently as possible with Living at home as independently as possible with home services or, living in small, quality structures home services or, living in small, quality structures as an alternative to living in an institution.as an alternative to living in an institution.

• Providing a broad range of community-based Providing a broad range of community-based services with all safety measures, including services with all safety measures, including transport - Need for qualified personneltransport - Need for qualified personnel

• Appropriate guardianship systemsAppropriate guardianship systems

Suitable personnel Suitable personnel to achieve these goalsto achieve these goals

• Competent general practitioners & specialistsCompetent general practitioners & specialists

• Qualification of the personnel in charge of education, Qualification of the personnel in charge of education, of training, of job-coachingof training, of job-coaching

• Adequate education and trainingAdequate education and training

• Interdisciplinary teamsInterdisciplinary teams

Financing the individual projectFinancing the individual project• Positive measures have a cost but for the majority of Positive measures have a cost but for the majority of

our countries, the answer is possibleour countries, the answer is possible

• The person and his/her needs must be at the heart of The person and his/her needs must be at the heart of the project, not the supposed financial constraintsthe project, not the supposed financial constraints

• No choice for the State – Effective rights for all oblige No choice for the State – Effective rights for all oblige to positive measuresto positive measures

• National responsibility – same rights on the whole National responsibility – same rights on the whole territoryterritory

• The financing must not influence the choice of the The financing must not influence the choice of the disabled persondisabled person

Role of the society as a wholeRole of the society as a whole

• Reaffirming the dignity and worth of Reaffirming the dignity and worth of every every personperson with autism with autism

• States must implement effective tools to end States must implement effective tools to end the injustice, discrimination and violation of the injustice, discrimination and violation of rights that confront most persons with autismrights that confront most persons with autism

• At the international level, two important tools At the international level, two important tools are the UN Convention on the Rights of are the UN Convention on the Rights of Persons with Disabilities, and the European Persons with Disabilities, and the European Social CharterSocial Charter

Violation of the European Social Charter

• Natural complement of the European Convention on Human Rights (civil and political human rights)

• Second treaty of the Council of Europe (social and economic human rights)

Fundamental Rights of People with Disabilties

• Right to diagnosis and health care

• Right to education

• Right to employment

• Right to social integration

• Principle of non-discrimination

Filing a Complaint with the Committee of Social Rights

• Collective complaints of violations of the European Social Charter may be lodged with the Committee of Social Rights

– International organisations with participatory status are entitled to lodge a complaint

– Recent, direct and efficient procedure

– Collective scope

– Committee issues a judicial decision

– Committee of Ministers issues a policy statement

Role of the Committee of Social Rights

• The Committee ensures compliance of legislation and full implementation of the European Social Charter

– The Committee examines whether the European Social Charter is satisfactorily complied with

– On the basis of reports submitted by Member States

– On the basis of collective complaints

• The Committee reviews the policy of Member States on people with disabilities

Ratification of the Protocol

• The State must have ratified the Additional Protocol to the European Social Charter providing for a system of collective complaints

– 14 States : Belgium, Bulgaria, Croatia, Cyprus, Finland, France, Greece, Ireland, Italy, Netherlands, Norway, Portugal, Slovenia, Sweden

Acceptance of the Provisions of the Social Charter

• The State must be bound by the provisions of the Charter that have been violated

– European Social Charter of 1961

– Revised European Social Charter of 1996

– http://www.coe.int/T/E/Human_Rights/Esc

Organisations Entitled to Submit Collective Complaints

• International non-governmental organisations with participatory status

– List established by the Governmental Committee

• National organisations in case of declaration by the State (Finland)

• Submission of complaints only in respect of matters regarding which the organisation has particular competence

Collective Complaint Autism Europe v. France

• Action greeted with interest by the Council of Europe

• First collective action for the defence of the fundamental rights of disabled people in Europe

• The complaint alleged serious deficiencies in the provision of education to people with autism in France

Efficient Procedure

• May 2002 - Decision of the board of Autism Europe

• July 2002 - Submission of the complaint

• December 2002 - The complaint is declared admissible

• February - April 2003 - Exchange of briefs between the parties

• September 2003 - Hearings in Strasbourg

• November 2003 - March 2004 - Final decision

Obligations of France

• France must guarantee to disabled children and adults the effective exercise of their right to education (Article 15)

– in mainstream institutions whenever possible

– in specialised institutions only if inclusion in mainstream institutions is not possible

• For this purpose, France must (Article 17)

– create a sufficient number of institutions

– take all measures necessary to ensure that these institutions are suitably adapted

Quantitative Deficiencies Dramatic Shortage of Institutions

• No more than 5% of children with autism attend regular schools

• No more than 10% of children and adults with autism are in specialised institutions

Qualitative Deficiencies

• Late diagnosis impedes early treatment and pre-school education

• Professional staff is poorly trained

• Day hospital replaces school

• Psychiatric hospital deprives adults of education and social integration

Discrimination

• Serious violation of law

– Failure to provide the fundamental right to education

• Violation is outrageous in fact

– France finances the education of 15 million children and adults

– By comparison, needs for people with autism run only in the thousands

– The most vulnerable people are first to suffer budgetary restrictions

Decisions of the CSR and of the Committee of Ministers

• The CSR has concluded that the situation in France constitutes a violation of Articles 15 and 17 of the Social Charter

• The Committee of Ministers has stressed the main provisions of the CSR decision and will monitor France's respect of the decision

Need for Positive Discrimination

• The Charter prohibits direct discrimination and all forms of indirect discrimination

• Indirect discrimination may arise by failing to take due and positive account of all relevant differences

• Indirect discrimination may arise by failing to take adequate steps to ensure that the rights that are open to all are genuinely accessible by all

Resolution of the Committee of Ministers

• The Committee stresses that

– notwithstanding a national debate going back more than twenty years, France has failed to achieve sufficient progress

– France still adopts a more restrictive definition of autism than that adopted by the World Heath Organisation

– the proportion of children with autism being educated is much lower than in the case of other children, including other disabled children

– there is a chronic shortage of care and support facilities for autistic adults

Impact of the Collective Complaint

• Legal and political impact of the decision

– The decision constitutes an important piece of case law and its scope goes well beyond the situation experienced in France, by people with autism

– France has defined two specific plans since November 2004; these plans remain insufficient to cover the needs but they constitute a start

– The Committee of Social Rights of the Council of Europe regularly reviews compliance by France with its decision and the Social Charter