End of Mission Statement by the United Nations Special Rapporteur on the rights of persons with disabilities, Ms. Catalina Devandas-Aguilar, on her visit to France

French

Paris, 13 October 2017

Members of the press,
Ladies and gentlemen,

In my capacity as United Nations Special Rapporteur on the rights of persons with disabilities, I conclude today my first official visit to France, which took place from 3 to 13 October 2017. I am an independent expert who reports to the United Nations Human Rights Council and the General Assembly, and advises on progress, opportunities and challenges encountered in the implementation of the rights of people with disabilities worldwide.

I would like to begin by warmly thanking the Government of France for their invitation to visit the country and assess, in a spirit of dialogue and cooperation, the level of enjoyment of the rights of persons with disabilities, the opportunities and existing challenges; and for the transparency, openness and excellent cooperation extended to me prior and during the visit. I would like to express my particular appreciation to the Secretary of State to the Prime Minister responsible for persons with disabilities and to the Secretary-General of the Inter-ministerial Committee on Disability (CIH) for coordinating my visit.

I would like to especially thank all the persons with disabilities and their representative organizations with whom I met, including persons with psychosocial disabilities and autistic persons, who shared with me their situation, concerns and desires for change.

During my stay, I had discussions with numerous senior Government representatives, including representatives of departmental and territorial authorities, representatives of Departmental homes for persons with disabilities (MDPH), the independent national human rights institution (CNCDH), the Ombudsman (DDD), other independent administrative institutions (CGLPL, CSA), a wide range of organizations of and for persons with disabilities, and service providers. I visited two hospital centers in Lyon and Avignon with psychiatric and other facilities for persons with disabilities, the psychiatric infirmary of the police prefecture of Paris, a medico-educational institution in Lyon, a junior secondary school with inclusive practices in Paris, and an inclusive housing project in Marseille.

I will now present some of my preliminary observations and recommendations based on information provided by Government officials, which I will elaborate in more detail in a report that I will present at the 40th session of the UN Human Rights Council in Geneva in March 2019. These preliminary observations neither reflect all the issues presented to me, nor all the initiatives undertaken by the Government of France in the area of disability.

Legal and policy framework

At the international level, France has ratified the Convention on the rights of persons with disabilities (CRPD) and its Optional Protocol in 2010, as well as every other international human rights treaty, with the exception of the International Convention on the Protection of the Rights of All Migrant Workers and Members of their Families. I would like to encourage France to ratify this Convention, as well as the “Marrakesh Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired or Otherwise Print Disabled”. I also encourage the Government to consider withdrawing its interpretative declaration on articles 15 and 29 of the CRPD.

In March 2016, France submitted its first State report to the Committee on the Rights of Persons with Disabilities, which the Committee will consider in the near future. France was recently reviewed by the Human Rights Committee (2015) and by the Committee on the Rights of the Child (2016), which made specific recommendations concerning the rights of persons with disabilities. In 2013, the country was also examined as part of the Universal Periodic Review, including on disability issues, and will be reviewed again in January 2018. France has a standing invitation to special procedures of the Human Rights Council and regularly hosts visits by these independent experts.

At the regional level, France has ratified the European Convention on Human Rights and other human rights treaties of the Council of Europe. France is bound by the Disability Strategy 2017-2023 of the Council of Europe, as well as by the European Disability Strategy 2010-2020 of the European Union. According to article 55 of the French Constitution, international conventions, including the CRPD, have a supra legal status and can be directly applied by courts.

The French legislative and normative framework in the field of disability is based on the Law of 11 February 2005 on “Equal rights and opportunities, participation and citizenship of persons with disabilities”. With the adoption of this law, which predates the CRPD, France has taken measures to promote access of persons with disabilities to information and communication, social protection, health, employment and education. However, this legislation is not fully compliant with the CRPD. By way of example, the definition of disability in the 2005 law is not in line with the treaty and should be revised. Moreover, the right to reasonable accommodation is not recognized under this law.
Despite this framework, as I will explain further on, I am concerned about certain provisions that are not in line with article 12 of the CRPD, which recognizes the full legal capacity of persons with disabilities. Examples include the Electoral Code, the Civil Code and mental health legislation. I would like to encourage the relevant legislative authorities to undertake a comprehensive review of their normative framework in order to complete the process of legal harmonization, in accordance with article 4 of the CRPD.

France’s long-standing Welfare State tradition is reflected in its social protection and policy frameworks, for which considerable financial and human resources have been invested. In recent years, the Government has made efforts to address inequalities in access to all human rights by persons with disabilities on an equal basis with others, through the adoption of laws, policies, programs and public initiatives. More recently, President Macron’s administration committed to make the rights of persons with disabilities a priority for his five-year term. This translated, for instance, in the placing the position of Secretary of State responsible for persons with disabilities directly under the Prime Minister, the recent adoption by the Inter-ministerial Committee on Disability of a roadmap on disability with key objectives for the next five years, the beginning of consultations on the 4th plan on autism, and the organizing of a National Disability Conference in 2018. 

While welcoming these positive developments, I would like to encourage the authorities to ensure that all public policies, including disability-specific ones, adopt a human rights-based approach to disability, and aim to remove barriers that impede the effective and full participation of persons with disabilities on an equal basis with others.

Implementation and monitoring of the CRPD

The adoption of a national roadmap on disability is a significant step that should go hand in hand with a comprehensive national disability policy, time-bound benchmarks and effective implementation plans at departmental and territorial levels, along with the necessary budgetary and fiscal measures. Stronger coordination among the relevant ministries tasked to mainstream and implement disability provisions within their institutions should be given priority, including through the prompt nomination of disability and accessibility focal points within each ministry, cabinet and departmental administration. 

The Government has designated the Ombudsman (DDD) as an independent mechanism to monitor the implementation of the Convention, as required by article 33 para 2 of the CRPD, in cooperation with the national human rights institution (CNCDH), civil society and the National Consultative Council of Persons with Disabilities (CNCPH).

Data collection

Generally, I have noted a serious lack of socio-demographic data and statistics disaggregated by disability. For instance, the national census does not include questions on disability, and the latest Disability and Health Survey dates back to 2008. I was also informed that there is little to no data on autistic persons in the country, which makes it very difficult to inform and design adequate rights-based policies and responses.

General considerations on the current disability framework and response

During my visit, a high number of interlocutors in charge of disability issues expressed the view that persons with disabilities should be provided with special separate services, including in residential institutions, in order to provide them with the best care, protect them from any possible harm, stigma and discrimination, and allow them to be safe in the company of their peers with disabilities. In line with this view, current efforts to address the needs of persons with disabilities are highly specialized, segregated and compartmentalized, with a strong focus on addressing the individuals’ impairment rather than on transforming the society and its environment to ensure accessible and inclusive services as well as community-based support.

This type of segregated responses not only perpetuates the wrong depiction of persons with disabilities as “objects of care” instead of “subjects of rights”, but also contributes to their isolation from mainstream society, and prevents and/or delays Government efforts to implement the systematic and profound environmental changes that are necessary in order to remove attitudinal, physical and communication barriers.

In my view, France needs to carefully revise and transform its system to be able to truly provide inclusive responses and solutions for all persons with disabilities, manage and allocate resources more efficiently, and provide specialized services and support in the community on an equal basis with others. To make this shift, France needs to embrace the spirit and principles of the CRPD, and adopt a human rights-based approach to disability. This approach should be integrated into all policies, strategies, programs and responses from the central to the local levels, so as to transform society entirely and make all human rights accessible to and inclusive of persons with disabilities.

During my visit, I have noticed an urgent need to increase the capacity of government officials, civil servants, service providers and civil society to implement the CRPD; and to engage in a wide-scale awareness-raising campaign on the rights-based approach to disability. The majority of public authorities and service providers I met with referred directly to the provisions of Law of 11 February 2005 and were not familiar with the innovations introduced by the CRPD. Moreover, as explained below, it is essential that the voices and opinions of persons with disabilities themselves be taken into account, since they are currently not equally represented in decision-making processes.

Accessibility to the physical environment, information and communication

During my visit, I have observed that public and private infrastructures, as well as public transport systems in France, are still not fully accessible to persons with disabilities, with strong disparities between regions. The adoption of a series of amendments to the Law of 2005 de facto postponed by several years the initial deadline of 2015 for making all infrastructure and transport accessible, and allowed for several exceptions in private settings. I have received many complaints about the daily challenges that persons with disabilities face to move around and access basic services, such as healthcare. The 2024 Olympic and Paralympic Games in Paris are a major opportunity to make the capital city fully accessible to all persons with disabilities. However, efforts in this area should be extended to the entire country, including the overseas territories. I urge the Government to accelerate and complete the process of transformation of the physical environment as soon as possible.   

With regard to access to information and communication, I was pleased to learn about efforts made by the Conseil Supérieur de l’Audiovisuel to introduce the use of closed captioning and audio-description in national television, on both public and private networks. I was also informed that the daily TV news are provided in French sign language several times a day. However, I am concerned that despite this official recognition, the use of French sign language remains very limited in practice, including in basic services.  Moreover, critical awareness-raising campaigns on issues such as prevention of cancer and communicable diseases, public health and reproductive rights, are generally not accessible to all persons with disabilities, particularly the deaf-blind, autistic persons and those with intellectual disabilities. The use of alternative and augmentative technology remains very limited. I was also alarmed to learn that due to the development of information and communication technology, including screen readers, the use and teaching of Braille is less and less common, putting blind people at risk of becoming illiterate.

Social protection

France allocates significant financial and human resources to social protection programs and services for persons with disabilities. Its social protection system covers a wide range of contributory and non-contributory benefits targeting persons with disabilities, including the allocation aux adultes handicapés (AHH) and the prestation de compensation du handicap (PCH). The MDPH is in charge of the disability assessment and determination, the development of the individual compensation and support plan, and the financial support for accessing services.

During my visit, I noticed that the French social protection system is highly complex and fragmented. On the one hand, the existence of so many benefits, services and structures makes it difficult for persons with disabilities to navigate the system. On the other hand, the responses are extremely compartmentalized and often overlap, which prevents a cost-effective use of resources or the provision of adequate solutions to the needs of persons with disabilities. When a gap is identified, the system responds by creating new services rather than integrating the existing supply or expanding its coverage. This makes coordination among stakeholders difficult, despite efforts by the Departmental homes for persons with disabilities (MDPH) to serve as “one-stop shops” for all services. Moreover, almost 90% of institutions and services are run by non-profit organizations with limited governmental planning and guidance, and the majority of them favor residential and institutional solutions instead of community living and inclusion.

While I welcome the increasing social investment and attention given by the French government to persons with disabilities, I would like to recommend simplifying the current social protection system and ensuring access to appropriate community-based services, devices, and other assistance for disability-related needs. Importantly, the French social protection system needs to replace segregated and paternalistic solutions with responses that promote active citizenship, social inclusion and community participation. 

Education

The Law of 11 February 2005 and the Code on Education recognize the right of every child to inclusive education and enabled the implementation of measures to improve access to mainstream education for children with disabilities. According to data from the Ministry of National Education, in 2016 there were some 300,000 children with disabilities enrolled in mainstream primary and secondary schools, out of which some 87,840 benefitted from the support of a localized unit for school inclusion (ULIS), and another 137,600 were assisted by school aides (auxiliaires de vie scolaire or AVS). Others receive support services from non-profit organizations, such as the Service d'éducation spéciale et des soins à domicile (SESSAD). Moreover, an additional 81,000 children were enrolled in specialized medico-social services and institutions (ESMS), which are financed by the Ministry of Solidarity and Health and managed by non-profit organizations. I was also informed about a recent initiative to include autistic children in inclusive kindergartens.

Despite these measures, children with disabilities enrolled in mainstream schools face multiple barriers to access education on an equal basis with others, not only due to the lack of accessible infrastructure, but also because there is no specialized training for regular teachers and school aides (AVS), and no curricular adaptations and accommodation in the classroom. Additionally, there is a proliferation of actors and non-profits providing support to children with disabilities in school, which leads to overlaps and lack of coordination. To overcome these challenges, I encourage the Government to shift from the current individual focus requiring children with disabilities to adapt to the school system, to a global focus aimed at transforming the education system to receive children with disabilities in an inclusive manner.

I am very concerned about the situation of children with disabilities who are placed in segregated residential medico-social institutions, as they do not receive quality education on an equal basis with others, as well as those considered “without solution” who receive no education at all. I am concerned to note that there is no official data on the number of children with disabilities excluded from the school system. Also, once a child is referred to a medico-social institution, his or her progress is no longer tracked by the Ministry of National Education. I would strongly encourage the authorities to transform the existing medico-educational institutions into non-residential resource centers for children with disabilities. Moreover, it would be important that all current financial and human resources be placed under the responsibility of the Ministry of National Education.

I am pleased to note the strong commitment of the Minister of National Education to continue the process of transformation towards inclusive education. I also welcome his initiative to engage with me in a process of dialogue, technical cooperation and follow-up during this transformation.

Living independently in the community

I am extremely concerned about the very high number of persons with disabilities living in institutions across France. Approximately 100,000 children and 200,000 adults with disabilities reside in a broad range of institutionalized settings. The majority of these institutions are financially supported by the State and run by non-profit organizations, including parents’ organizations. Although these institutions differ in size, name and setup, they all segregate and isolate individuals from their communities, deny their choice of and control over living and support arrangements, and significantly restrict their day-to-day decisions.

Despite these figures, I have been informed that the demand for places in residential institutions exceeds the existing supply. As a result, some 6,500 French persons with disabilities, including 1,500 children, are currently receiving residential services in institutions in Belgium, without any kind of monitoring by the French authorities. The ever-increasing demand for residential services arises from France’s inability to provide a sufficient number of quality community support services, as well as from the lack of social awareness of the rights of persons with disabilities to live independently in the community.

I would like to stress that there is no such thing as a "good institution" as they all impose a certain type of living arrangement, which limits the individual’s capability to live a good life on an equal basis with others. Persons with disabilities, including those with high support needs, must have the opportunity to live in their communities, to choose their place of residence and with whom they live. As demonstrated by the pilot program "Un chez-soi d’abord" that I visited in Marseille, it is possible to provide personal housing arrangements coupled with community-based support while ensuring respect for the rights of the individual, a higher level of satisfaction, and a more efficient allocation of public resources. 

In this regard, I urge the Government to adopt a concrete action plan to progressively close all existing institutions and to transform the existing supply market of services for persons with disabilities into community-based services, including adequate housing. The de-institutionalization of children with disabilities should be a political priority, and the Government should consider establishing a moratorium on new admissions.

Legal capacity

In France, a very high number of persons with disabilities have their legal capacity removed or restricted. According to data provided by the Ministry of Justice, in 2015 385,000 persons with disabilities were placed under guardianship (tutelle) and 360,000 under curatorship (curatelle). Individuals under tutelle lose the power to exercise their rights and must be represented by a guardian in order to carry out civil acts; individuals under curatelle retain the power to exercise most of their rights but need to be assisted or authorized by a third party to carry out certain civil acts. While the law states the principles of necessity, subsidiarity and proportionality for the use of these measures, I have been informed that persons with disabilities, particularly autistic persons and those with intellectual and psychosocial disabilities, are systematically placed under tutelle or curatelle, for instance to facilitate procedures for accessing social benefits or being placed in institutions.

It is important to note that the French legal framework for adult protection, reformed by the Law No 2007-308 of 5 March 2007, contemplates other less restrictive measures such as the sauvegarde de justice, the mandat de protection future, the mesure d'accompagnement social personnalisé, and the mesure d'accompagnement judiciaire. Although these measures represent an alternative to the tutelle and curatelle, which supports the exercise of legal capacity by persons with disabilities, I have been informed that they are underused due to poor awareness and training among judges, lawyers, families and the general population. 

I wish to stress that equal recognition for the legal capacity of persons with disabilities is a core obligation under article 12 of the Convention on the Rights of Persons with Disabilities, which covers both the capacity to be a rights-holder and the capacity to act in abidance with the law. In reality, far from being protected, persons placed under guardianship are deprived of their rights, and are at risk of abuse and institutionalization. I strongly urge France to review its legislation to eliminate all regimes of substituted decision-making and to ensure that supported decision-making alternatives are available to all persons with disabilities, regardless of the level of support they may require to take informed decisions.

Deprivation of liberty and involuntary treatment

French law allows the involuntary hospitalization and treatment of persons with psychosocial disabilities. The Code of Public Health, modified by the Law No 2011-803 of 5 July 2011, regulates the conditions and procedures for "psychiatric care without consent", which could be carried out on outpatient basis or take the form of full or partial hospitalization, at the request of a third party or of a State representative. The juge des libertés et de la détention must review any measure of full hospitalization no later than twelve days after admission.

During my visit, I was informed that many persons with psychosocial disabilities and autistic persons are receiving psychiatric care without consent. Moreover, I was told that opportunities to challenge their hospitalization are limited because judges rely heavily on  doctors’ assessments and people are afraid to attend the hearings with the judges as they are not sufficiently informed of their purpose. Consequently, many persons with disabilities remain in psychiatric hospitals for long periods and, due to the lack of community-based services, some are later transferred to long-term residential institutions where they will spend the rest of their lives.

Furthermore, I have received serious allegations of abuse and degrading treatment against persons with disabilities under involuntary psychiatric care. Practices reported include mental and sexual abuse, the use of seclusion and restraints, the practice of "packing" for autistic persons, and threats of involuntary hospitalization made by medical personnel. People under outpatient psychiatric treatment, for example, have reported the imposition of curfews and mobility restrictions under threat of forced hospitalization. Involuntary outpatient treatment, however, is not judicially reviewed.

Against this background, I was pleased to hear about initiatives such as "Un chez-soi d’abord", which provides individual housing and support to persons with psychosocial disabilities, and a respite house for persons with psychosocial disabilities in Marseille. I encourage the Government to increase its support to scale up these and other community-based alternatives that are respectful of the rights and dignity of persons with disabilities in accordance with the CRPD. Additionally, I urge France to review its legal framework regarding involuntary psychiatric care to ensure that all health care interventions are provided on the basis of free and informed consent. 

Employment

According to official data from the Ministry of Labor, the estimated unemployment rate among persons with disabilities is 18%, which is double the national average, and those seeking work are generally less skilled and older than jobseekers without disabilities. While the 6% minimum recruitment quota for workers with disabilities set in the 2005 law is almost met in the public sector (5.17%), it is not in the private sector (3.3%).

In this regard, I welcome the initiatives undertaken by authorities to improve access to jobs for persons with disabilities such as the adoption of multi-stakeholder national agreements and regional plans, and the provision of labor inclusion services.

I was surprised to learn that the concept of reasonable accommodation, referred to in article 2 of the CRPD, is not recognized in the area of employment. More efforts are required to enable the effective inclusion of persons with disabilities in the workplace, including by providing the necessary accommodations to ensure the recruitment and career development of persons with disabilities.

Participation of persons with disabilities

In relation to participation in decision-making processes, the National Consultative Council of Persons with Disabilities (CNCPH) coordinates the consultation process on all disability-related measures. I noted the recent efforts of this body to make consultations more inclusive by including some representative organizations of persons with disabilities, in addition to the traditional consultations with organizations representing the interests of persons with disabilities, such as service providers and parents associations. However, more efforts are required to ensure consultations and the representation of the diversity of persons with disabilities, including in rural areas and in overseas departments and  territories. I hope that the upcoming National Conference on Disability scheduled for May 2018 will be more inclusive.

I would like to encourage the Government to promote and support the establishment of organizations representing all persons with disabilities, including those with intellectual, developmental, psychosocial and multiple impairments, who are currently not represented by existing organizations, as required under article 29 of the CRPD. However, I am concerned that the CNCPH has no operational budget to enable its proper functioning. Moreover, it would be important to take measures to increase the participation of persons with disabilities in public functions. The meaningful participation of women and children with disabilities in all decisions affecting them should also be strengthened.

In relation to political participation, I am particularly concerned that 17% of persons with disabilities under guardianship measures (tutelle) are deprived of their right to vote. The relevant article of the Electoral Code should be revoked (e.g., article L5 on the suspension of the right to vote for specific persons under guardianship). I was also informed that polling stations and electoral campaigns are not accessible to the diversity of persons with disabilities. I encourage the Government to make the entire electoral process accessible and inclusive of persons with disabilities.

International cooperation

In line with article 32 of the CRPD, French Official Development Aid (ODA) should be accessible to and inclusive of persons with disabilities. According to the information received, this is currently not the case.  I would like to encourage the Government to ensure that French ODA includes the rights of persons with disabilities as a cross-cutting conditionality.

Members of the press, Ladies and gentlemen,

France is a country with a strong tradition of republican and democratic values. The French republican project rests on ideals of freedom, equality and fraternity, which should guide the full inclusion of persons with disabilities in all areas of life. Disability policies in France need to embrace these ideals, endowing all people with disabilities with more opportunities to live the lives they choose to live. 

Let me conclude by reiterating that I am very grateful to the Government of France for inviting me to visit this country, enabling me to deepen my understanding of the situation of persons with disabilities. This invitation – and what I have learnt during my visit – indicates a strong high-level commitment and political will to protect and ensure the rights of persons with disabilities in France. I am convinced that the new administration is moving in the right direction but changes must be deeper to ensure that responses are comprehensive and sustainable. I hope that my visit and my report will assist the country in moving forward on this issue, and to make the shift necessary to create a truly inclusive society.