Persons with disabilities are entitled to enjoy the same human and fundamental rights and equal opportunities for a life without discrimination in all its dimensions as everyone else. Nevertheless, they are not recognised as equal citizens with legal and decision-making capacity, they live in an inaccessible environment, cannot move around freely, do not have equal access to education, are more likely to leave school early and without qualifications, and are less likely to progress to higher education. More than 200,000 persons with disabilities in Europe are forced to live in closed institutions deprived of the most fundamental human rights. There are still considerable barriers to accessing health care and habilitation/rehabilitation services. Women and girls with disabilities, people with psycho-social or intellectual disabilities and those with complex or intensive care needs face increased difficulties in accessing adequate care and support. The CoE DAP 2016-2020 should therefore recommend the adoption of legislation, policies and measures that:

ensure that representative organisations of persons with disabilities are given the necessary means, opportunity and support to participate in policy decisions at all levels of governance;
ensure that all persons with disabilities have equal access to vote, to voting materials, procedures and facilities and, if needed, to assistance by a person of their own choice;
abolish legislation, policies and practices that deny the recognition of legal capacity of persons with disabilities and replace guardianship regimes with supported decision-making systems;
protect persons with disabilities from exploitation, violence, abuse, cruel, inhuman or degrading treatment both within and outside the home and in particular in institutional settings, with a particular focus on gender-based violence;
promote the inclusion of persons with disabilities through independent living schemes and access to a range of support services and community–based living options;
adopt a holistic approach to the accessibility of goods and services, the built environment, transport, infrastructure, retail, information and communication;
develop inclusive education systems ensuring equal access to quality education and vocational training in mainstream schools and to life-long education;
enable persons with disabilities to emerge from poverty by supporting their employment in the labour market or in sheltered employment as a transitional means for workers with disabilities to enter the mainstream labour market;

ensure that persons with disabilities have access to the same variety, quality, and standard of free and affordable healthcare as other people, to disability-specific services for identification, diagnosis and intervention, and to a network of appropriate (re)habilitation services and programmes designed to foster independence, inclusion and participation in society;
set up and strengthen social protection systems for persons with disabilities which focus on income support, job opportunities and empowering social services;

in all the above areas of action pay particular attention to identifying, reporting and preventing discrimination against women with disabilities and persons with disabilities who need intensive support from others.

2. Introduction

The European Disability Forum (EDF) is the European umbrella organisation representing the interests of 80 million persons with disabilities in Europe. EDF’s mission is to ensure that people with disabilities have full access to fundamental and human rights through their active involvement in policy development and implementation in Europe. EDF is a member of the International Disability Alliance (IDA).

Persons with disabilities represent at least 15% of the global population,[1] not counting their families. As a first general remark, EDF feels it important to stress that persons with disabilities include persons with a wide range of impairments, regardless of age, gender or the extent of support needed. As defined in Article 1 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD),[2] “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”.

Persons with disabilities are entitled to enjoy the same human and fundamental rights, and equal opportunities for a life without discrimination in all its dimensions, as anyone else, regardless of the nature and the severity of their impairments. The adoption in December 2006 of a Convention on the Rights of Persons with Disabilities by the United Nations represents a major step in the fight for the full enjoyment of human rights by all people with disabilities. The UNCRPD is a landmark piece of international human rights law. It represents the official recognition of disability as a human rights issue on the international stage. Persons with disabilities are no longer to be seen as objects of charity or welfare but are increasingly recognised as active members of society with human and civil rights to be secured on an equal basis with others.

The UNCRPD strengthens the principle of non-discrimination, promotes equal opportunities and confirms a radical shift of approach regarding disability, from a medical/charity model to a human rights/social model. Paragraph e. of the Preamble together with Article 1, evoke the social model, by describing disability as a condition arising from “interaction with various barriers [that] may hinder their full and effective participation in society on an equal basis with others” rather than a condition characterised by inherent limitations. This places the UNCRPD firmly within a social model, which is rights-based as opposed to a medical model of disability, which involves health-oriented legislative instruments.

The UNCRPD embodies a social understanding of disability. This new approach recognises that disability is the result of the dynamic interaction between persons with impairments and the social, physical and attitudinal constraints and barriers that inhibit full participation by, and inclusion of, persons with disabilities in society. It is this understanding that creates the conceptual point of departure for articulating disability rights. The UNCRPD calls for a holistic application of human rights, and accordingly medical models of disability do not afford the conceptual breadth required for full and effective implementation of the Convention. It provides a comprehensive legal framework that ensures an integrated approach to tackling the full inclusion of people with disabilities, as well as a legal, moral and political roadmap for change. The provisions of the UNCRPD prevail over international instruments adopted in the past, because the Convention offers higher protection to persons with disabilities.

3. Overall purpose of the DAP 2016-2020

The Council of Europe has acknowledged the particular need to protect the rights of persons with disabilities in Europe, and undertook to contribute to implementation of their rights through its Disability Action Plan 2006-2015 (DAP). However, despite the efforts of the CoE member states, improvement in the human rights situation of people with disabilities has been slow and the human rights model of disability has not yet been embraced in all policy areas.[3] The DAP 20016-2020 should therefore pursue higher standards of protection of the human rights of persons with disabilities. This means that it should fully comply with the UNCRPD, to which a large majority of the CoE member states are parties.[4]

With regard to definitions of disability at national level, even though some states have conceptualised disability within a social context, this is not the case for the majority. Furthermore, reference to specific types of impairments within certain national definitions may hamper the full protection and inclusion of all persons with disabilities. Too often, persons with disabilities are still seen as ‘vulnerable’ people or as ‘patients’ and they are still discriminated against in many areas of life.

Resistance towards a human rights-based approach to disability policy is also still present at CoE member states level. Persons with disabilities experience a systematic violation of their rights and face many barriers to full participation in society on a daily basis. People with disabilities live in an inaccessible environment, cannot move around freely, and are unable to go to work, restaurants, theatres, cinemas, libraries, go shopping, meet friends, or undertake any other daily activity, due to inaccessible public transport, pavements or buildings. They do not have equal access to education, are more likely to leave school early and without qualifications, and are less likely to progress to higher education. More than 200,000 people with disabilities in Europe are forced to live in closed institutions deprived of the most fundamental human rights. There are still significant barriers to accessing long-term care services, which particularly affect groups of persons with disabilities. People with psycho-social, learning or intellectual disabilities and those with complex or intensive care needs face increased difficulties in accessing adequate care and support.[5] Moreover, people with disabilities can face multiple discrimination, based not only on their disability but also on age, sex, sexual orientation and gender identity, race, ethnic and social origin, religion and other statuses.

Since the financial and economic crisis in Europe, there has been a growing fear that the impact that social protection policies may have on economies will force persons with disabilities further into poverty and social exclusion. Persons with disabilities and their families, who are not responsible for the crisis, have been faced with drastic cuts in social services and benefits, leading to greater unemployment, a return to segregating institutions where persons with disabilities are deprived of their freedom and the right to make decisions regarding their own lives. Millions of persons with disabilities are propelled into poverty and social exclusion, thereby compromising any progress in implementing the UN Convention.

No person with disability should be deprived of a chance to develop his/her own skills and contribute his/her specific talents and capacities to society. The forthcoming CoE DAP 2016-2020 should therefore comply more closely with the principles and obligations enshrined in the UNCRPD, an overarching legal instrument at international level for promoting and protecting the human rights of persons with disabilities. In the CoE DAP 2016-2020, the provisions of this Convention, including the human rights model of disability, should therefore prevail. The concept of disability used in the UNCRPD, focusing on barriers, which may hinder full and effective participation in society on an equal basis with others, and not on individual impairments should be fully reflected in the DAP 2016-2020, and there should be a strong emphasis on removing attitudinal, physical, communication, legal and other barriers as the major obstacle in the realisation of rights for persons with disabilities.

A cross-cutting approach and the mainstreaming of disability issues in all policies should be adopted in the DAP 2016-2020. Mainstreaming disability is the process by which the state and the community ensure that persons with disabilities can fully participate, and be supported in doing so, in any type of structure and service intended for the general public, such as education, health, employment and social services. It presupposes that disability is taken into consideration in legislation and reforms in all sectors. Mainstreaming needs to be accompanied by specific measures to ensure equality of opportunity (such as reasonable accommodation, affirmative actions, and support services among others), so that persons with disabilities can enjoy their rights.

Women with disabilities constitute approximately 16% of the total population of women. Therefore equality between men and women should also be one of the guiding principles of the DAP 2016-2020, which presupposes the mainstreaming of gender equality provisions across all policy areas.

Moreover, the recommended supporting measures should be proportionate to each person’s needs and circumstances, regardless of the nature or severity of disability.

Recommendations

The CoE DAP 2016-2020 should:

promote disability policies in line with the UNCRPD, based on the human rights approach to disability;
adopt a concept of disability which complies with the UNCRPD concept;
reflect the rights-based approach and the social model understanding of disability in its overall guiding principles;
adopt a mainstreaming approach in order to protect and promote the rights of and equality of opportunities for persons with disabilities in all policy areas;
address the issue of discrimination against girls and women with disabilities and against persons with disabilities having intensive support needs in conformity with the UNCRPD (Art. 4.1[6] Article 6[7] and the Preamble letter (j)[8]);
be developed in close consultation with representative organisations of persons with disabilities.

4. Political participation

Political participation denotes the right of all members of society to be heard and to shape policies and decisions affecting their lives, so that their needs can be effectively met. According to the UNCRPD, participation is about having the right, the means, the space and the opportunity, and where necessary the support, to influence and to participate in policy decisions, and to engage in actions and activities which affect the lives of people with disabilities or which are important to them.

One key principle underpinning the participation of persons with disabilities is the active involvement of representative organisations of persons with disabilities in all policy planning and in decision-making processes, at all levels. The international disability movement’s motto ‘Nothing about disabled people without disabled people’ perfectly reflects this key principle. Involving people with disabilities and their representative organisations in a meaningful way and taking into account their views in decision-making processes, in the development and implementation of legislation and policies, and in other decision-making processes concerning issues that affect them will enable people with disabilities to exercise influence and call for improvements in governance and access to health, rehabilitation, education, employment, environment, transport, information, cultural, goods and services which affect the daily lives of persons with disabilities.

Recommendation CM/Rec(2011)14 of the CoE Committee of Ministers on the participation of persons with disabilities in political and public life[9] states that “persons with disabilities and/or their representative organisations should be involved in the whole policy cycle: programming, planning, implementing, monitoring and evaluating policies that affect persons with disabilities”.

In Article 4.3 of the UNCRPD,[10] the involvement of persons with disabilities in decision-making processes through their representative organisations concerning issues relating to them is laid down as an obligation. This obligation presupposes recognition of the right of persons with disabilities and their representative organisations to be actively involved in policy and policy-related processes at national, regional and local level. Article 4.3 UNCRPD places on policy-makers at all levels of governance the obligation to review their systems of participation of persons with disabilities in order to ensure that they are actively involved and have a say in the policies and legislation concerning their interests.

“Actively involved” means that organisations of people with disabilities are not meant to be just viewers of a film. “Actively involved” means structured consultation at all stages of policy-making. “Representative organisations” means that organisations of people with disabilities have to organise themselves in order to be representative and internally democratic. Public authorities therefore have an obligation to deal with those organisations at the level at which they are representative: local, regional, national or international. There is no need for other intermediaries between organisations of people with disabilities and the institutions. The difference made by the UNCRPD between civil society and representative organisations of persons with disabilities has meaningful implications. In Article 4.3, explicit and specific reference is made to representative organisations of persons with disabilities.

In some countries, measures to support the participation of persons with disabilities and their representative organisations in policy-making processes are part of national strategies or programmes on disability. Some countries allocate financial resources to national disability organisations to promote their participation in the activities of relevant government bodies and advisory boards, and have established national councils on disability or similar consultative bodies to provide advice to the government on issues relating to disability.[11]

However, much remains to be done at CoE and its member states level to ensure the effective and significant participation of persons with disabilities in decision-making processes that have an impact on their lives. The CoE and its member states therefore have to review their systems for the participation of persons with disabilities in order to ensure that they are actively involved and have a say in the policies and legislation concerning their interests.

Recommendations

The DAP 2016-2020 should:

1. promote reform of its political structures and functioning to:

adopt a definition of representative organisations according to criteria of inclusiveness of all disabilities, independence from external influence and democratic functioning;
give priority to systematic consultation with the representative organisations of people with disabilities (DPOs) in all the policy-making processes affecting their lives and strengthen their participation, including through formal mechanisms to involve them systematically and through supporting measures;

2. call on member states to:

promote and support the creation of a cohesive cross-disability movement at national level;
encourage and support the political participation of women with disabilities, both in organisations of persons with disabilities and in women’s organisations;
adopt a definition of representative organisation of people with disabilities (DPO) according to criteria of inclusiveness of all disabilities, independence from external influence and democratic functioning,
support their empowerment to participate significantly and effectively in policy-making processes and in decision-making processes at all levels of governance;
give priority to the representative organisations of persons with disabilities in consultations on policy issues concerning them.

5. Right to vote

Persons with disabilities must be included in political life in the same way as any other European citizen, since otherwise their participation in society cannot be full and effective. Voting and standing for election are important aspects of participation and should be understood in the context set out in Article 29 UNCRPD.[12]

In the mid-term review of the DAP 2006-2015, the CoE member states point out that action is generally being taken to ensure that people with disabilities can exercise their franchise whether by postal voting arrangements, home visiting to record votes or by ensuring that polling stations are physically accessible with confidential personal assistance to help with the voting process. However, only in a few CoE countries is there any constitutional protection of the rights of persons with intellectual disabilities and mental health problems to vote and to be elected.

Deprivation of legal capacity affects a large number of Europeans with intellectual and psycho-social disabilities, as well as the ageing population. Few reliable data are available on the political participation of people with disabilities at European level, for many reasons, including the lack of data on the political participation of persons with disabilities, as political participation has rarely been seen as an important area when studying the social participation of persons with disabilities. However, some findings suggest that currently a majority of European countries have capacity-related eligibility criteria for voting and that people with intellectual, psycho-social or severe disabilities are the most excluded among the excluded. Legal-capacity restrictions in some member states are denying people with mental health problems and people with intellectual disabilities the right to take decisions about their lives, including the right to vote.

The denial of the right to vote can be related to the restricted legal capacity of persons with intellectual and mental disabilities, as restrictions on legal capacity may also deprive persons with disabilities of their right to be elected to public office or even to vote. The report by the Fundamental Rights Agency on the political participation of persons with intellectual disabilities and mental health problems[13] shows that a majority of European countries have an automatic or quasi-automatic exclusion provision in their legal systems that link the right to political participation to the legal capacity of the individual. These states deny the right to political participation to all persons under a protective measure, such as a partial or total guardianship, regardless of their actual and/or individual level of functional ability. A minority of countries has lifted all restrictions on political participation, thereby ensuring that persons with mental health problems and persons with intellectual disabilities can enjoy full participation in the electoral process. However, even in countries where no limitation applies to the right to vote of persons with intellectual disabilities or with mental health problems, the principle of private vote does not allow a person with a disability to be accompanied in the voting booth by a personal assistant of their choice. This effectively prevents them from voting.

Recommendation CM/Rec(2011)14 of the CoE Committee of Ministers on the participation of persons with disabilities in political and public life[14] reaffirms that all persons with disabilities have the right to participate in political and public life on an equal basis with others. The revised Venice Declaration on the Code of Good Practice in Electoral Matters on the Participation of People with Disabilities in Elections[15] states that persons with disabilities should be able to exercise their right to vote and participate in political and public life as elected representatives on an equal basis with other citizens, as the participation of all citizens in political and public life and the democratic process is essential for the development of democratic societies. To this end, assistance in decision-making and free choice by persons with disabilities should be ensured, in accordance with CoE Recommendation CM/Rec(2011)14.[16]

Article 29 of the UNCRPD guarantees the right of people with disabilities to vote in elections on a non-discriminatory basis, to stand for election as a candidate for public office, to have equal and effective access to voting procedures and facilities and, if needed, to be assisted by a person of their own choice. Accordingly, States Parties have a duty to provide reasonable accommodation to voters with disabilities to enable them to exercise their right to vote. For example, physical barriers to polling stations and voting booths should be removed; communication should be facilitated; and voting information should be provided in accessible formats. Furthermore, States Parties should also ensure that persons with disabilities are fully able to realise other rights to participate in political and public life, such as to stand for election as candidates for public office, or to be consulted on legislative or policy matters that may affect their lives.

Recommendations

The CoE DAP 2016-2020 should call on member states to:

reform legislation excluding persons with disabilities from the right to vote on the basis of their legal capacity or ability to make informed decisions;
take measures to remove barriers that may hinder the full and effective participation of persons with disabilities in political and public life, including inaccessible voting and registration venues, inaccessible ballots, inaccessible voting information, etc.;
develop civic education programmes relating to elections and voting;
provide disability awareness training for all public servants involved in voting procedures,
provide reasonable accommodation, where needed,
ensure that voting procedures, materials and information are accessible (e.g. programmes of political parties, ballots, etc.) through accessible formats (e.g. Braille, Large Print and Plain-Language);
ensure that persons with disabilities, if necessary, have assistance in voting;
ensure that persons with disabilities have the right to stand for election and perform public functions at all levels of government.

6. Equal recognition before the law

All disabled people, irrespective of the nature and degree of their disability, hold, exercise and benefit from equal and inalienable rights on an equal basis with others. The right to equal recognition before the law means that legal capacity is a universal attribute inherent to all persons by virtue of their humanity and must be upheld for persons with disabilities on an equal basis with others.

Persons with disabilities represent the group whose legal capacity is most commonly denied in legal systems worldwide. The denial of legal capacity to persons with disabilities has, in many cases, led to the deprivation of many fundamental rights, including the right to vote, the right to marry and found a family, reproductive rights, parental rights, the right to give consent for intimate relationships and medical treatment, and the right to liberty. All persons with disabilities, including those with physical, mental, intellectual or sensory impairments, can be affected by the denial of legal capacity and substitute decision-making. However, persons with cognitive or psycho-social disabilities have been, and still are, disproportionately affected by substitute decision-making regimes and the denial of legal capacity. When a person is considered to have impaired decision-making skills, often because of a cognitive or psycho-social disability, his or her legal capacity to make a particular decision is consequently removed. This is decided simply on the basis of the diagnosis of a disability (status approach), where a person makes a decision that is considered to have negative consequences (outcome approach), or where a person’s decision-making skills are considered to be deficient (functional approach). In all these approaches, a person’s disability and/or decision-making skills are taken as legitimate grounds for denying his or her legal capacity and lowering his or her status as a person before the law. Moreover, gender and gender-related aspects are a compounding factor in legal incapacitation processes. For many women and female adolescents with disabilities, legal incapacitation is a means of depriving them of their sexual and reproductive rights.

Legal capacity is indispensable for the exercise of not only political and civil, but also economic, social and cultural rights. It acquires a special significance for persons with disabilities when they have to make fundamental decisions regarding their health, education and work. Moreover, deprivation of legal capacity prevents people with disabilities from expressing their free and informed consent in the context of access to the justice system. Article 12 of the UNCRPD[17] sets forth the principle that legal personhood is therefore a characteristic inherent to all human beings. All disabled people, like other citizens, therefore have the right to have their status and capacity recognised in the legal order. Article 12 enables all persons to hold, exercise and benefit from equal and inalienable rights irrespective of the nature and degree of their disabilities. “Legal capacity” within the meaning of Article 12 of the UNCRPD should be understood as the evolving capacity to be both a holder of rights and an actor under the law. Legal capacity to be a holder of rights entitles the person to full protection of his or her rights by the legal system. Without this right, the individual would no longer be a person in the legal sense and thus be deprived of all other rights. A person’s status as a person with a disability or the existence of an impairment must never be grounds for denying legal capacity or any of the rights provided for in Article 12 of the UNCRPD. The concept of incapacity must therefore be rejected from the outset.

Legal capacity and mental capacity are distinct concepts. Legal capacity is the ability to hold rights and duties (legal standing) and to exercise these rights and duties (legal agency). It is the key to accessing meaningful participation in society. Mental capacity refers to the decision-making skills of a person, which naturally vary from one person to another and may be different for a given person depending on many factors, including environmental and social factors. Under Article 12 of the Convention, perceived or actual deficits in mental capacity must not be used as justification for denying legal capacity. Article 12 does not permit such discriminatory denial of legal capacity, but rather requires that support be provided in the exercise of legal capacity.

No individual in any society is truly independent of the influence of others. Non-disabled and disabled citizens are dependent on others for support in making decisions. Many people take decisions for themselves that are also not in their best interest. Disabled or not, all persons make mistakes. Support measures to exercise legal capacity whenever needed to people with disabilities who need assistance in taking decisions should be provided through a system of supported decision-making.

Supported decision-making starts from the presumption of full and equal legal capacity of all citizens, including those with severe and profound levels of disability. The support provided to exercise legal capacity should be adapted to the individual’s needs and wishes and should be appropriate and proportionate to the degree of disability, and respect the right to self-determination. A system for impartial assessment of the actual need for supported decision-making in exercising legal capacity should be established, carried out with the assistance of recognised independent experts, rigorous determination of the extent of the supporters’ role and power, periodical re-examination of the measures adopted and possible appeal of decisions by disabled persons or their families. The role of the support person (or network of persons) may cover providing day-to-day assistance, support in legal representation or psychological support. The supporters’ tasks would depend entirely on the wishes and the needs of the person with a disability. Again, it must be emphasised that the wishes of the person with a disability must always be the determining factor.

Support might include diverse, non-conventional methods of communication, especially for those people who use non-verbal forms of communication to express their wishes and preferences. The ability of some people with severe and profound disabilities to receive, process and send normal communication signals, through language or gestures for example, may be very limited or virtually absent. Support for these persons with disabilities should also be based on the knowledge of alternative and augmentative communication methods. The way people communicate should not be a reason to question their decision-making ability. Instead, extra due diligence must be applied to acknowledge the wishes and requests of persons with major and global communication impairments or intensive support needs in making decisions. In order to make sure that their views are taken into account in all aspects of life, support mechanisms in decision-making will have to ensure the highest level of support in reaching a decision, while maintaining the full legal capacity of all persons with disabilities, and respect of their equal and inalienable rights must always be a central concern. In the case of a psycho-social disability, guidelines which are individually tailored and agreed in advance with the supported person should be provided to the support person in order to deal appropriately with severe crisis situations where the person with a disability is unable to give consent or take a decision.

Support is a broad term that encompasses both informal and formal support arrangements. Support in everyday life can be informally provided by one or more persons whom the supported person trusts or by circles of care established in the local community, such as peers, friends, family or neighbours. The support persons should be selected by, or with the consent of, the individual concerned. Support should also involve trust-building activities. In cases where the person with a disability does not have any trust relationships, this person should have the opportunity to build trust relationships with support persons. Support arrangements do not necessarily have to be legally regulated, unless there is evidence that the individual is unhappy with the informal arrangement or that abuse or exploitation may be taking place. Formal support arrangements should be legally regulated and should focus on the main decisions of legal relevance that affect the life of a disabled adult: with whom and where they want to live, the choice of their work or day activities, medical decisions, financial issues, establishing possibilities for leisure activities, and the choice of appropriate support services where needed. In order to avoid conflict of interests, in no case should support persons be linked to a psychiatric facility, an organisation of service providers or a governmental authority.

Formal and informal arrangements should include training on decision-making at schools, advocacy and assistance in communication, and informal supporters. Mainstream support services (like debt counselling, consumer protection, etc.) should be made accessible and available to people with disabilities in all life situations.

Safeguard measures must be made available to protect persons with disabilities against exploitation and abuses. These safeguards must also protect the person from exploitation or abuse by supporters. The primary purpose of these safeguards must be to ensure respect of the person’s rights, wishes and preferences. Safeguards must never limit the full and equal enjoyment of all rights and must respect the persons’ autonomy, including the freedom to make one’s own choices. Special attention must be paid to safeguarding the rights of women and girls with disabilities and of people in need of a high level of support in all areas of life, who may be particularly vulnerable to undue influence, to make their own choices and decisions.

Recommendations

The DAP 2016-2020 should call on member states to:

abolish all legislation, policies and practices that in purpose or effect violate Article 12 of the UNCRPD;
ensure that full legal capacity is restored to persons with disabilities on an equal basis with others;
encourage and promote the legal transition from traditional guardianship laws to legislation that provides for a supported decision-making system;
ensure that adequate funding mechanisms are put in place to finance the supported decision-making system;
develop model projects into how supported decision-making can be implemented for all people with disabilities, including those with severe and/or complex needs;
establish criteria and selection processes for suitable support persons;
set up a registration system for these support persons that allows them to be officially recognised as supporters of the disabled individual;
require support persons to demonstrate that they have informed the supported individual about the consequences of any important decision, by all possible appropriate means;
ensure compulsory and regular training for all registered support persons on all aspects necessary for providing adequate support, including on the rules governing supported decision-making and on alternative and augmentative communication, the use of communication technologies and other communication techniques;
promote the creation of informal support networks;
provide support and training for support networks (family members, carers, etc.);
regularly review the functioning of the system of supported decision-making to ensure the accountability, liability and impartiality of the supporter;
provide safeguards to protect the rights and interests of those people with disabilities whose supporter is unable, despite his or her best efforts, to establish communication or understand;
create a mechanism to prevent abuse, including possibilities to request nullification of contracts in cases where the person is intentionally exploited, abused or even injured, while respecting the autonomy, wishes and preferences of the individual receiving support;
make mediation or counselling services accessible to all people with disabilities;
ensure that all existing structures and legal mechanisms for the protection of citizens’ rights in different areas of life are accessible to people with disabilities, accommodate their needs and take their interests into account;
create administrative (out-of-court) procedures that are easily accessible, available, effective and confidential for the supported person in the event of abuse, conflict or any other concern with respect to the functioning of the support;
disseminate information about the existence and work of such systems in an accessible format to all people with disabilities and their peers;
provide accessible information about rights, access to justice, consumer rights, public and disability-specific services, banking information and others which relate to decisions which have legal effect;
inform the population (especially certain target groups e.g. bank staff, doctors, social workers, etc.) about the system of supported decision-making.

7. Liberty, security of person and access to justice

As a categorical norm of international law, the prohibition of torture, cruel, inhuman or degrading treatment or punishment is absolute.[18] The UN Special Rapporteur on Torture[19] stated that the Convention invalidates earlier norms, including those which allow for involuntary placement and treatment, representing forms of violence and abuse inflicted against persons with disabilities. Nevertheless, discriminatory violence against persons with disabilities is an important phenomenon that has increasingly been recognised in a number of OSCE countries’ jurisdictions.[20] There is however a poor understanding of and lack of data on the phenomenon of disability hate crime against persons with disabilities.

People with disabilities in Europe are at higher risk of incidences of torture, violence and abuse in psychiatric hospitals and mental health facilities, general healthcare hospitals, social care institutions, segregated schools, psychiatric judicial hospitals, and prisons.[21] Unequal detention regimes for people with psycho-social disabilities exist as part of the penal system.[22] Furthermore, persons with psycho-social disabilities are too often subject to deprivation of liberty without consent due to involuntary treatment and/or placement. In most European countries, compulsory psychiatric detention and/or treatment is legally permitted on grounds linked to the existence of psycho-social disability. The European Fundamental Rights Agency report on involuntary placement and involuntary treatment of persons with mental health problems explains that the requirement for consent to medical treatment and healthcare is a key aspect for the protection of the integrity of persons with a disability.[23] The largely negative personal experiences described in this report underscore the importance of developing legal frameworks which can minimise such outcomes. [24]

Women and girls with disabilities face additional risks of numerous forms of violence, including forced sterilisation, coerced abortion and sexual abuse, as thoroughly documented,[25] including by the former Council of Europe Commissioner for Human Rights.[26]

Persons with disabilities are more often than not excluded from participation in proceedings due to inaccessible courts and premises and to the failure to provide meaningful and accessible communication and information for all people with disabilities[27] in simple and accessible language, orally or in writing, and to provide appropriate assistance for persons with hearing and speech impediments.[28] In addition, inaccessible victim-support services are a significant barrier for many victims with disabilities, in particular women with disabilities and persons with intellectual disabilities who cannot benefit from these services. Persons with disabilities who are deprived of their legal capacity risk being subjected without their free and informed consent to medical and scientific experimentation.

Persons with disabilities should be provided with individual and public hearings, accessible information regarding their rights, adequate legal representation paid for by the state and supported decision-making mechanisms. Judges and lawyers should be trained on the UNCRPD. Moreover, Article 15 of the UNCRPD[29] extends this protection to cover “medical or scientific experimentation” without consent. It further places an obligation on States Parties to take “all effective legislative, administrative, judicial or other measures” to prevent violations or the restriction of liberty of persons with disabilities in healthcare settings.

Recommendations

The Council of Europe Disability Action Plan 2006-15[30] recommends that member states take a number of actions to assist in the detection and prevention of abuse against people with disabilities, including in institutional settings,[31] where they are exposed to significantly greater risk of torture, ill-treatment, forced medical treatment, violence and abuse.[32] The DAP 2016-2020 should strengthen these recommendations and call on the CoE member states to:

adopt 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, including intrusive medical interventions in places of detention, mental health facilities, segregated schools, hospitals, psychiatric hospitals, judicial psychiatric hospitals and prisons;
adopt policy measures on gender-based violence to protect women and girls with disabilities, both within and outside their home, from exploitation, violence and abuse, and to facilitate their access to justice through community-based assistance and support;
develop research studies into situations of violence, exploitation and abuse experienced by people, in particular women and girls, with disabilities in institutional settings, and to take appropriate measures based on the findings;
include the obligation to provide supported decision-making mechanisms for persons with disabilities to ensure their free and informed consent in line with Article 12 UNCRPD;
develop alternatives to involuntary placement and treatment for people with intellectual and psycho-social disabilities;
ban disability discriminatory detention against the will of people with disabilities in any kind of mental health facility;
move the emphasis from the vulnerable individual with a disability to the procedural and age accommodations needed in legal proceedings to ensure effective participation of all types of persons with disabilities in the justice system;
ensure that persons with disabilities are not discriminated against on the basis of their disability in legal and administrative proceedings on their sexual and reproductive rights, right to a family and legal custody of their children;
review all cases of detention of persons with disabilities, in compliance with Articles 12 and 13[33] of the UNCRPD;
fund appropriate training and capacity building on access to justice for people with disabilities for those working in the field of justice administration, including prison and police staff;
promote training of judicial staff, social services and legal professionals involved in legal and administrative proceedings with regard to a person with disability’s sexual and reproductive rights, right to a family and legal custody of his or her children;
include accessible and meaningful communication and participation for people with disabilities in judicial proceedings through guaranteeing that all information and communication are accessible, including through the use of sign language, easy-to-understand text, augmentative and alternative modes, means and formats of communication;
pay particular attention to identifying, reporting and preventing cases of discriminatory violence against women with disabilities and persons with intellectual disabilities;
develop victim-support services which are accessible to people with disabilities, in particular to women with disabilities;
ensure that people with disabilities who are deprived of their legal capacity receive support in accessing the justice system and in giving their free and informed consent for justice-related decisions;
include among standards on criminal justice ‘bias crime’ and discriminatory violence, where persons are attacked because of the hostility directed at them by virtue of the inherent characteristics they possess.

8. Living in the community

All persons with disabilities have the right to be fully included and participate meaningfully in the everyday life of that community, regardless of the extent of the support needed to achieve full inclusion and meaningful participation. They have the right to be visible in the life of the community (at school, at work, in the neighbourhood, etc.) and to engage in the same activities as everybody else together with everybody else.[34] This means that all persons with disabilities should have the right to live in their local communities or in the community in which they choose to live on the same terms as any other person. In particular, the right of women and girls with disabilities to live in the community with choices equal to others, and their full inclusion and participation in the community should be ensured.

Despite the numerous official endorsements by public authorities concerning the independent living of people with disabilities, large closed residential institutions still exist where people with disabilities are obliged to live excluded from society. According to the European Commission funded report “Deinstitutionalisation and Community Living: Outcomes and Costs”,[35] there are more than one million children and adults with disabilities in Europe who live in institutions. While efforts have been undertaken in several European countries to improve the situation, subsequent reports[36] show that this institutionalisation is still widespread, while alternative living options are not being sufficiently developed, although the situation in the different CoE countries and also within the same country diverges significantly. The persistence of residential segregating facilities depends mainly on the false belief that they are a less expensive solution than community-based services, as well as on a complex vicious circle, in which some families, due to lack of support and of alternative living options, are forced to send their relatives with disabilities to institutions; in such cases, the link with the children/adult with disabilities gradually weakens and the prospect of a return to the family environment is almost non-existent.

The right to independent living must be ensured for all people with disabilities in compliance with Article 19[37] of the UNCRPD. Article 19 is a core right of the UNCRPD. If the exercise of this right is not facilitated, then all other Convention rights cannot be properly enjoyed. Even if this right is recognised in law, the enjoyment of the right to live independently and to be included in the community is often hindered by a number of barriers such as exclusion and poverty, the lack of support services, multiple discrimination, ethnicity, etc.[38] The lack of early intervention and the absence of accessible information, peer support, support services for families and informal networks close to the person with disabilities are obstacles to the enjoyment of the right to live in the community. These barriers facilitate the creation and development of institutions.

The lack of awareness by care and health professionals or judges also leads to institutionalisation for many persons with disabilities. For people with psycho-social or intellectual disabilities it can even lead to their detention and forced treatment. The idea that persons with disabilities, in particular persons with intellectual or psycho-social disabilities cannot be part of the community is a common assumption in our societies.[39] The ‘need to protect’ people with disabilities is not a justification to maintain institutions segregating people with disabilities.[40]

Women with disabilities have less access to employment and education. Without economic independence, they often depend on their family and cannot afford the necessary support to live independently. Mothers with disabilities have additional problems in order to live independently. The lack of support for families and carers leads to the separation of children with disabilities from their families and to institutionalisation. Older persons with disabilities also face difficulties in the enjoyment of the right to live in the community and to contribute meaningfully to society and find themselves often excluded or socially isolated.[41] People with disabilities belonging to ethnic minorities, such as Roma in Central and Eastern Europe or immigrants with disabilities, are often disproportionally sent to institutions compared with the rest of the population.[42]

The economic crisis has further exacerbated this situation with reductions in income and social spending, and with the postponement of reform measures.[43] Moreover, because of the devolution of competences in the provision of social services and cuts in the budgets transferred by central governments to local authorities, one of the main challenges is how to ensure that local authorities can deliver a range of suitably high quality services in the community.

The right to live independently in the community should be guaranteed to all persons with disabilities through independent living schemes, personal assistance, access to a range of support services and to community-based living options, including support at home, shared housing, social housing and small-scale residential services. Individual assessment is one of the key elements to ensure that the services on offer match the specific needs of the person to participate fully in society.

Independent living for persons with disabilities presupposes that:

people with disabilities have the opportunity and the right to decide how, where, with whom and how they want to live,[44] in accordance with their own wishes and preferences,[45] not depending on the availability of the support needed;
persons with disabilities have access to a home of their own, with a private space to develop their identity and relationship with others;[46]
people with disabilities have the opportunity to make real choices between a range of different community-based services, including personal assistance and community-based living options, such as support at home, shared housing, social housing and small-scale residential services, to prevent adults with disabilities from finding themselves in secluded living arrangements against their will, segregated in their own homes or completely dependent on their parents and families;
the range of community-based support services are of the same high level of quality, without hindering the flexibility needed to provide individually-tailored support, designed around the person’s needs, provide opportunities for life-long development of talents and skills, and take the gender perspective into account, both in the built environment and location and in the design of services and fittings;
people with disabilities have the option to have full control over the resources allocated for their support needs;
people with disabilities are not deprived of their liberty, including their freedom to refuse compulsory and unwanted treatment, at home or in an institution, on the basis of their disability (Article 14 UNCRPD),[47]
people with disabilities are free from torture or cruel, inhuman and degrading treatment (Article 15 UNCRPD),[48] and are protected against exploitation, violence and abuse within and outside the home (Article 16 UNCRPD);
women with disabilities have the right to live in the community with choices equal to others;
mothers with disabilities are granted access to community residences with their sons and daughters should they require it, and the necessary resources must be provided for them to perform motherhood;[49]
children and adolescents with disabilities grow up at home in a family and young people grow step-by-step into being independent from parents or care professionals.[50]

It is also essential to combat negative stereotypes in order to abandon once and for all the charitable approach and promote full inclusion in society.

Recommendations

The DAP 2016-2020 should call on member states to promote independent living for persons with disabilities through the following policies and actions:

taking measures to ensure access for persons with disabilities to mainstream community services and facilities, such as education, transport, healthcare and employment, instead of creating “parallel systems”;
providing reasonable accommodations where needed to ensure that persons with disabilities can access mainstream services on an equal basis with others;
developing a range of alternative supported-living options in the community reflecting the diversity of perspectives and different needs;[51]
making affordable and accessible housing options available to all persons with disabilities and their families;[52]
providing financial assistance for residential adaptations or the provision of technical aids to increase the person’s autonomy;
providing and securing in the long term independent living schemes, including personal assistance and comprehensive individually-tailored support within mainstream facilities or community-based services;
securing favourable and fair working conditions for staff of community-based services and for personal assistants to ensure sustainable and long-term solutions;
ensuring the availability of the necessary support to parents and families of persons with disabilities, as well as to parents with disabilities (financial support, community-based services, training to develop and strengthen their potential and to enable children with disabilities to grow up in their families);
paying special attention to satisfying the needs of women and girls with disabilities and of persons in need of intensive support from others;
providing suitable training encompassing a gender perspective to staff employed in services to understand the particular needs of persons with disabilities, and in particular on the specific needs of women and girls with disabilities;
developing and adopting standards on quality of services in compliance with the rights-based approach to disability, in close consultation with people with disabilities and their representative organisations;

developing and adopting protocols for standard working practices in services respecting the inherent dignity, integrity and the fundamental freedoms of the person, to protect people with disabilities, and in particular women and girls, from violence and abuse, including through matching users and staff gender in services;

providing accessible information and communication on the available independent living options;
implementing the shift from institutional care to alternative community-based services through:
- the establishment of a strong infrastructure of community-based services, which should be adequately funded and sufficiently resourced for the provision of the required hours of personal assistance to support the living needs and inclusion of persons with disabilities in all aspects of society;
- the development of transition plans, with clear targets, timetables and resources for replacing institutions with community-based services within a reasonable amount of time;
- the relocation of the residents of segregating institutions into community-based services following an evaluation of individual needs, wishes and circumstances;
- the empowerment of persons with disabilities who have been or are living in institutional settings to make informed choices about alternative community-based living options;[53]
involving users, families and representative organisations of people with disabilities in the design, implementation, evaluation and monitoring of community-based residential services, support services and independent-living schemes.

9. Accessibility

Accessibility is a precondition for the enjoyment of fundamental rights: the accessibility of services, transport, new technologies, built environment, education, etc. is imperative for promoting the full inclusion of people with disabilities. For persons with disabilities, a barrier-free environment is essential for their freedom of choice and it is the key to an autonomous and active social and economic life. Barriers give rise to social exclusion and isolation for people with disabilities.

Persons with disabilities often face accessibility barriers. The accessibility of the built environment constitutes a core principle to enable persons to participate in political and cultural life and sporting activities and to ensure social inclusion. The built environment where persons with disabilities live, work or just pass through abounds with obstacles to movement and orientation, to information and to the use of items and equipment that are part of their environments. These obstacles appear in both everyday lives and emergency situations; they restrict the autonomy, safety, privacy and dignity of persons with disabilities and cause discrimination. Inaccessible buildings compromise the ability of persons with disabilities to function independently and to participate fully in society. In order to exercise the rights of citizenship or to secure services offered by government or the private sector, access to the built environment is essential. Environmental barriers impede mobility on streets, access to buildings and facilities (including transport), and the ability to perceive relevant information from signs, announcements or signals. To be accessible this information must be provided by multiple and alternative means of communication, i.e. visual, tactile, auditory, easy-to-understand, etc. Removal of these barriers opens up opportunities to education and employment and enables people with disabilities to live more independently.

The lack of adequate information available in accessible formats in transport services makes it difficult for persons with disabilities to travel. Mainstream ICTs do not usually take into account the specific e-accessibility requirements of persons with disabilities. Without this accessibility, people with disabilities are unable to perform simple actions which everyone else is capable of. For instance, in the event of an emergency, a person with a hearing impairment will not be able to call the emergency number in the same way as any other citizen if there are no video- and text-relay services.

Barriers such as the accessibility of school buildings, inclusiveness of schools, appropriate curricula, and methods of teaching, including individual support, hinder the access of children and young people with disabilities to mainstream education systems. Persons with disabilities experience numerous barriers to accessing the open labour market. Persons with intellectual and developmental disabilities and persons who require more intensive support are particularly subject to many stereotypes regarding their assumed lack of competence or productivity. Persons with disabilities often have a poorer health status than persons without disabilities because of the barriers they face in accessing healthcare and benefiting from quality health services on equal terms with others.

Such barriers also impede the full and equal participation of persons with disabilities in leisure, sports and cultural activities, as well as their ability to go shopping, to travel, or to surf on the Internet. The lack of access to all these services has a direct impact on the quality of life and the expectations of people with disabilities. The impact of this lack of accessibility is even greater for women with disabilities and mothers than for men because they can experience double discrimination, for example at work. Moreover, persons who require more intensive support often have no access to adequate mainstream support services and therefore have to spend their lives in institutions and are excluded from participating fully in society.

There is a need for a holistic approach to the concept of accessibility; this means that all goods and services should be accessible to everybody, regardless of their disability or ability. All services should benefit from a mainstream approach where the needs of people with disabilities are integrated in order to create a more inclusive society. Experience has shown that the market and society as a whole have a lot to gain from accessibility. We cannot afford to lose out on the competences of qualified persons with disabilities, simply because their needs are not adequately met within the workplace or in education. Furthermore, the number of potential clients will increase substantially if the mainstream market offers accessible products and services. Universal Design or Design for All means quality and comfort for everyone, with or without a disability, as well as more potential users, since it incorporates an understanding of human diversity. Any measure that encourages the development of universally designed goods, services, equipment and facilities will reduce, or avoid, the costs of the subsequent dismantling of physical barriers. Accessibility should therefore be viewed as an investment that will make a positive contribution to the inclusion of persons with disabilities in all aspects of society.

The principle of accessibility requires State Parties to dismantle and prevent barriers resulting from discriminatory attitudes by promoting different forms of accessibility in the public and private spheres, including physical, technological, economic and social accessibility, as well as information and communication accessibility. Accessibility rights in the UNCRPD serve the function of facilitating access in various contexts, including generally in public and private spheres, and

specifically in access to justice and political decision-making contexts. The obligation under Article 9[54] of the UNCRPD to ensure accessibility for persons with disabilities has a very broad scope, including the following areas:

Infrastructure: all infrastructure should be based on designs that take accessibility for persons with disability fully into account. To this end, the use of universal design will be of added value, because accessibility issues will be considered from the outset.

Buildings: accessibility measures such as ramps, lifts, signage in Braille and in easy-to-read, alternative/augmentative communication and audio formats, live assistance and intermediaries should be made available to facilitate access by persons with disabilities to buildings and other facilities open to the public.

Information and Communication Technology (ICT): this issue relates to the way in which information is presented, operated and shared, and is the most challenging accessibility issue for many persons with disabilities. Information and Communication Technologies (including their installation) and services that should be made accessible to persons with disabilities include:
- computers, tablets (hardware, software and applications) and peripheral devices;
- websites: up to now in the EU, only a limited percentage of information on public websites and their services provided online are fully accessible for persons with disabilities, while almost all private websites remain inaccessible;
- telecommunications, including telecommunication devices (landline telephone handsets and mobile handsets), public payphones, answering machines and pagers;
- audio-visual content, television and radio, including both radio and television devices and broadcasting, along with the new means to access the content on demand;
- E-books
- self-service terminals such as ATMs, or ticketing machines

Transport: full accessibility of all modes of transport should be ensured, not only by means of assistance procedures to disabled passengers, but also by making the transport infrastructure and rolling stock/vehicles, websites, information services, and ticketing machines accessible. Persons with disabilities should be able to use all means of transport independently and spontaneously without being discriminated against.

Housing services: accessible housing services for persons with disabilities are a prerequisite in order to live on an equal basis with non-disabled people. For instance, persons with disabilities need to have accessible property rental and acquisition services, social housing services, and housing construction services.

Emergency services: persons with disabilities (including old people) are usually those who use emergency services the most, which is the reason why the sector should be modernised in order to meet the need of this category of the population.

Services in the field of cultural life, recreation, leisure and sport: persons with disabilities should be able to access sites and cultural services delivered in public and private places. The perspective of the artist/performer/producer with disabilities should also be considered. In addition, it is important that toys and recreational equipment are tailored to the needs of children with disabilities and persons with disabilities in general.

Tourism: persons with disabilities and their families are increasingly using mainstream tourism services but they are still confronted with many barriers that prevent their access to those services (e.g. access to tourism sites, hotels and restaurants, tourist information and complaint procedures).

Banking: access to banking services (physical and online) and associated equipment (e.g. ATMs) remains a critical issue for many persons with disabilities and this issue must therefore be addressed.

Insurance: persons with disabilities are generally excluded from health and life insurance preventing them from accessing derived services such as mortgage loans: this constitutes a flagrant human right violation.

Household appliances: domestic furniture and products (for instance, washing machines, microwaves, ovens, etc.), including their installation, must be made as accessible as possible to the widest range of users, and the increasing digitalisation of consumer goods, which creates accessibility problems to many persons with disabilities (including old people), must be addressed. The “Design for All” principle should be used to guarantee the highest level of accessibility for everyone.

Retail: in order to be able to purchase goods in an accessible way, both shops and items for sale must be accessible. Regarding e-commerce, accessibility must be ensured for websites and their content, for the physical and built environment of the warehouses where the goods are picked up after an online order, as well as for delivery procedures.

Legal matters and justice: this can include access to public documents (e.g. identity cards and passports), to government buildings, to political life (e.g. electronic voting machines) and to legal procedures (e.g. the examination of a deaf witness via a sign language interpreter).

Gender issues, which have traditionally been ignored when addressing accessibility, should be considered.

Recommendations

The DAP 2016-2020 should call on the CoE member states to :

adopt a holistic approach to accessibility
develop and adopt plans with clear objectives for achieving accessibility and/or equal access in a reasonable length of time in the field of:
- the built environment of public premises, workplaces, educational environments, home, cultural infrastructure, etc.
- public transportation,
- public information, including on social, healthcare and other services,
- new information and communications technologies (ICTs) and systems such as web and smartphone applications, online services and media services, including through incentives to ICT developers to make such technologies and systems accessible at minimum cost to persons with disabilities,
adopt accessibility standards and guidelines on a European level to support the accessibility of services and facilities open to the public;
encourage the development of universally designed goods, services, equipment and facilities according to the “Design for All” principle; also by procuring only accessible goods and services from public administrations;
adopt compulsory training programmes on accessibility tailored as appropriate to all relevant stakeholders, such as architects, planners, engineers, and implementers of infrastructure projects, transport undertakings, public service providers, teaching staff, web and apps developers, etc.;
adopt a gender perspective for addressing the specific accessibility requirements of women with disabilities;
provide appropriate support services to persons with disabilities when the latter are travelling;
train staff providing these support services specifically in assisting women with due regard for their dignity;
ensure the accessibility of specific services for children (play areas, nappy-changing facilities, breast-feeding rooms etc.);
address the accessibility requirements of persons with disabilities and intensive support needs;
allocate human and material resources to guarantee universal accessibility and equal opportunities for women and girls with disabilities and for persons with disabilities and intensive support needs in situations of risk and emergency, to ensure that they receive the support they specifically need and avoid any intervention which may prove inadequate.

10. Education

For any human being, education is the means to develop those skills needed to achieve a fulfilling and meaningful life in the community. For persons with disabilities, education is that and much more. It is the necessary condition for achieving independence, social inclusion, full participation, equality and well-being in all areas of community life. In a rights-based approach to disability, rules, regulations and provisions must be established in order to secure human and fundamental rights and to meet individual needs. In accordance with this approach and the international legal framework, education must be recognised as a fundamental right which means that persons with disabilities must have the right to receive education of the same quality as any other person, in an environment that takes into account their needs. Moreover, as for society as a whole, education should be inclusive. Furthermore the UNCRPD grants a right to inclusive education at all levels.

Yet persons with disabilities, and in particular students in need of high-level support, are often excluded or do not have adequate access to education services. The concluding observations by the UNCRPD Committee on the EU countries examined so far have shown that this right is far from granted. Data from 2011 show that 19% of youngsters with disabilities are early school leavers, and that 39% of these are pupils with a severe limitation.[55]

The Revised Draft Mid-term Review Report on implementation of the Council of Europe Disability Action Plan 2006-2015[56] shows that in some member states there is evidence that special education is still the predominant system for the education of children with disabilities.

A report by the Academic Network of European Disability Experts (ANED) concerning the inclusive education of pupils and students with disabilities in Europe[57] highlights the very significant challenges and barriers that remain to accommodate disabled students in mainstream education at all levels. In many countries educational provision includes special schools for specific impairments. The option of sending children with disabilities, especially those with cognitive impairments, to special educational facilities is permissible and in most cases promoted. This is a significant challenge to the effective implementation of inclusive education, because as long as the option of sending children with disabilities to special educational facilities remains available, their full and effective integration in an inclusive education system may not be achieved. In some countries, there is no support within the mainstream system; on the contrary, there is strong support for specialised education which means that pupils/students with disabilities are directed towards this type of education. The ANED report also shows that access to mainstream education tends to be easier for children with specific learning difficulties (e.g. dyslexia etc.) or speech impairments than for those with other impairments.

Such education systems will need to develop transition plans to be backed by adequate training and resources. The lack of progress towards inclusion is also due to the fact that there is often a lack of technical and human resources in mainstream education. In addition, there is frequently a failure to understand what reasonable accommodation means, and students’ needs for adjustments are often only partially met. The lack of resources for the provision of individualised support to learners with disabilities in mainstream schools, and the lack of specialised training for teachers in supporting learners with disabilities, are major challenges to the full and effective inclusion of persons with disabilities in the education system.

Being enrolled in a mainstream school does not necessarily mean full inclusion within the school. Many countries tend to ‘include’ disabled students in special classes integrated in mainstream schools. Nevertheless, to put all pupils with different kinds of disabilities in one class segregated from other pupils is tantamount to ignoring the specific needs of different children with different disabilities and a continuation of the distinction between, on the one hand, children generally and, on the other, children with disabilities. Even in mainstream school systems there can be confusion between integration and inclusion. The integration concept involves merely an adaptation of the person to fit in, and not changes to the environment, educational approach and organisation. Integration is a matter of location – the placing of students with disabilities in mainstream schools where they have to adapt to the existing approaches to teaching and learning and the way the school is organised. Inclusion is broader and presupposes a progressive change and adaptation of the education system, so that everybody can have their needs met and thrive. Even though primary schools are gradually improving, there are still important barriers for people with disabilities in secondary and higher education. The education problems become even more problematic when it comes to life-long learning schemes.

It should also be pointed out that discrimination against girls and women with disabilities on multiple grounds in terms of their access to education is widespread in Europe. When we look at the situation of girls and women with disabilities in Europe from a general perspective, we find that they have less access to school; they have higher rates of school dropout, higher illiteracy rates and therefore decreased access to employment. It is therefore necessary to take special measures vis-à-vis girls and women with disabilities in order to fulfil the objectives of inclusive education.

Article 24 of the UNCRPD challenges current policies on the basis of a clear right, and requires a new understanding and a review of current thinking and practices.

Education must be recognised as a fundamental right meaning that persons with disabilities have the right to receive education of the same quality as any other person, in an environment that takes into account their needs. As a fundamental right, the right to education does not allow any exceptions, limitations or hierarchy, and should be based on entitlement, not on privilege. Access to education should not be denied to any child because he/she is considered uneducable on the grounds of disability or any other condition. On the contrary, any human being should be considered to have in himself or herself a never-ending potential, which must be developed through education.

While some persons with disabilities may require specific strategies to be able to learn, there is no reason why these strategies cannot be applied in mainstream settings. On the contrary, in a mainstream educational setting, these strategies represent a resource to maximise the learning potential of other pupils with other difficulties. Moreover, inclusion of pupils and students with disabilities in mainstream schools represents a unique opportunity for the other pupils and students to understand and appreciate diversities from an early age, and to develop a sense of social responsibility. An inclusive approach to education is therefore beneficial to all students, whether or not they are disabled and whether or not they have learning difficulties. In an inclusive approach, it is fundamental that people with disabilities have access to their nearest school, college or university.

The Salamanca Statement,[58] adopted in 1994, provides a good starting point with its acknowledgement that inclusive education means that the school can and must provide a good education to all pupils irrespective of their varying abilities. All children must be treated with respect and guaranteed equal opportunities for learning together.

National legislation and policies have to respect the right of persons with disabilities to be educated in an inclusive education system, one which guarantees a common learning environment for all persons with disabilities alongside those without disabilities. Specialised education should gradually be integrated into the mainstream educational system according to the traditions and cultures in each country, but without compromising in any way the principle of equal opportunities. Good practice and skills in the field of special education should be adapted to be applied in the general education systems, and should inspire new pedagogical tools.

The environment, teaching and learning and organisation of the school and education system must systematically be changed in order to remove barriers to pupils/students with disabilities, so that they can maximise their academic and social achievements. An inclusive approach is beneficial to all students, whether or not they are disabled and whether or not they have learning difficulties. It is essential that policies and practices are personalised and responsive to the specific needs of children, whatever their impairments. The funding of the education system should allow for greater flexibility to cater for the varying support needs of learners with disabilities.

Though educational legislation and policies are generally designed and implemented at national level, local authorities have a role to play in promoting equal opportunities for access to education, training and life-long learning for people with disabilities. In particular local authorities should facilitate local synergies between stakeholders in the education system, including the employment, welfare and health sectors, in order to strengthen inter-institutional complementarities. In addition, they should ensure the accessibility of state schools, transport and learning materials, and the availability of any other resources falling within their competences.

Furthermore, there has to be a revolution in peoples’ minds, including families and organisations of people with disabilities, and in public authorities, school directors, staff, and trade unions. Inclusive education should not be seen just as an obligation, but also as an opportunity to educate all children on human rights and respect for all. In a human-rights perspective, policy-makers, public authorities, the stakeholders concerned and the population as a whole must recognise that the nature or severity of impairments cannot justify the denial of a fundamental right, and financial restrictions cannot be invoked to deny the positive measures that are necessary, including proper support, an accessible educational environment, reasonable accommodations and individually tailored programmes.

Education is to be considered a life-long process, and persons with disabilities should be provided with the same opportunities as non-disabled people to access education or training during all the phases of their life, and according to the situation in which they live. Persons with disabilities must have access to all levels of education including life-long learning. Life-long learning programmes are a key means to ensure the matching of skills and jobs and they are strictly linked to the right to employment, including finding a job, job retention and career development opportunities for persons with disabilities on an equal basis with others. Policies and legislation must therefore address access, not only to schools, and universities, but to all other education opportunities in a life-long learning perspective. Universal access should be applied in any reform of schools or any adaptation of the school environment. In addition, the principle of non-discrimination should be applied in access to both formal and informal education. All appropriate initiatives to eliminate discrimination against women and girls with disabilities should be taken, in order to ensure that they enjoy equal rights and the same conditions as men and boys with disabilities in the field of education, including non-academic and vocational activities, in line with women’s preferences.

To achieve these goals, legislative acts and policies must be developed in close co-operation with organisations of persons with disabilities, of women with disabilities and of parents of children with disabilities, as well as in consultation with other relevant stakeholders, such as teachers’ trade unions, school directors, local authorities, etc.

Recommendations

The DAP 2016-2020 strategy on education and life-long learning should have as one of its priorities the promotion of inclusive education and education for all, including girls and women with disabilities. It should therefore call on the CoE member states to ensure that people with disabilities have equal opportunities and access to the right to inclusive education through the following measures:

1.Legislative measures ensuring free and compulsory basic education to all children and adolescents with disabilities:

an anti-discrimination legislation covering access to education on the ground of disability, as well as the multiple grounds of gender, ethnic origin, race, sexual orientation, age and disability, should be adopted. Such legislation should ensure that failure to accept a disabled pupil/student in a mainstream school is a criminal offence in accordance with anti-discrimination laws;
establishing dissuasive sanctions to perpetrators of discrimination acts;
repealing any existing legislation which defines any group of children with disabilities as ‘uneducable’;
placing the provision of education, including for all children with disabilities, under the responsibility of the Ministry of Education (not of the Ministry of Health or Social Affairs);
explicitly defining the necessary policies, resources and facilities to secure the effective education of pupils and students with disabilities in an inclusive environment;
ensuring the accessibility of school buildings, equipment, materials and communication;
adopting a definition of reasonable accommodation within education, including both human and technical aids;
ensuring accessible transport for children and students with disabilities, under the same conditions as other children;
establishing committees for early identification and assessment of the educational support needs of children with disabilities, enabling them to have access to inclusive education from the earliest possible age;
establishing formal and structured co-ordination and synergies between ministries to meet the diverse needs of pupils and students with disabilities, in particular between the education, social and health systems, to ensure further inclusion of pupils/students with chronic illnesses, in order to avoid separated solutions whenever possible.

2.Policies and positive action to support the implementation in practice of these legislative measures:

developing action plans with concrete targets for the transition from special schools to mainstream schools and the transfer of pupils/students within a reasonable time, with measurable progress and to an extent consistent with the maximum use of available resources;
establishing monitoring mechanisms to disaggregate data on school participation, achievement and social acceptance;
fulfilling the transition to mainstream inclusive schools;
allocating adequate financial resources on a permanent basis for accommodation and support to students with disabilities within the general education budget;
ensuring personalised support in the general educational system to pupils and students with disabilities in their local school alongside their non-disabled peers;
developing individually tailored educational programmes and flexible curricula, including non-academic and vocational activities;
adopting appropriate communication and teaching instruments, such as Braille, alternative script, augmentative and alternative modes, means and formats of communication and orientation, which allow for the participation of all students with disabilities, including those with major communication and learning disabilities;
applying new technologies for teaching processes in mainstream schools to facilitate the participation of children with disabilities, in particular those with intellectual and sensory disabilities;
involving parents and students/pupils in the definition of individual educational plans;
including human rights education, empowerment and respect for diversity in the school curricula;
including human rights issues and equality issues, as well as knowledge about Braille, sign language and other alternative and augmentative communication modes in the general teacher’s training and education studies curricula;

providing teachers and other school staff with pre-service and in-service training on inclusive education, to respond to diversity in mainstream schools and classrooms;
encouraging the training of people with disabilities to become teachers and their recruitment in the mainstream school system;

actively encouraging social interaction and friendships between disabled and non-disabled peers, including through peer support and mentoring, also with the aim of challenging bullying;
establishing in mainstream schools student bodies, such as school councils, which provide a forum which includes pupils and students with disabilities, for expressing their views on matters affecting their schooling, and the opportunity to have their views given due weight in accordance with their age and maturity;
advising parents on how to deal with the education of their daughters and sons;
raising awareness of inclusive education among the relevant stakeholders: teachers, students, parents, organisations of people with disabilities, people working on special needs education, and local authorities;
organising on-site study visits of existing positive experiences of the implementation of inclusive education in Europe;
exchanging best practices in education among different countries, involving the main stakeholders of such processes: teachers, students, parents, organisations of people with disabilities, people working on special needs education, and public authorities;
identifying and combating discrimination against women and girls with disabilities in all these areas and addressing their specific educational needs, including through:
- raising awareness among parents about the importance of providing girls with disabilities with opportunities for high quality education;
- providing information to women, girls with disabilities and their families about available programmes, grants etc.;
- providing women with disabilities vocational guidance and programmes to develop further skills and knowledge later in life;
addressing the educational needs of the migrant community and other groups who might be expected to have limited access to education;
addressing the specific needs of pupils and students with major learning disabilities and/or intensive support needs through adequate support and teaching strategies and means;
developing and adopting life-long learning strategies for disabled people, in particular for people with intellectual disabilities, to ensure retention of knowledge, participation in society and access to employment;
consulting and actively involving persons with disabilities and their representative organisations in designing, implementing and monitoring legislation, policies and measures on inclusive education.

11. Employment

The right to work is a fundamental human right. Work secures a livelihood for the person and her or his family, and it contributes to the person’s development and recognition within the community.

The employment rates for people with disabilities barely reach 50% of the European employment average. 75% of people with severe disabilities do not have the opportunity to participate fully in the European labour market.[59]

Compared with non-disabled persons, people with disabilities are less likely to be in full-time employment, more likely to be unemployed, and significantly more likely to be economically inactive.[60] Moreover:

People with disabilities in employment are more likely to be in jobs for which they are overqualified.[61]
When in employment, workers with disabilities are more likely to be among the working poor, as they are frequently in low-paid jobs with poor career prospects and working conditions or work in poor quality, informal, subsistence jobs.[62]
Some people with disabilities face greater disadvantages than others in terms of obtaining and keeping a decent job:
- People with certain types of disability – such as intellectual and mental health disabilities – face greater difficulties in finding and retaining employment.
- Disabled women are less likely to have a decent job than either non-disabled women or men with disabilities.

In addition to placing persons with disabilities at a higher risk of poverty, these situations combine to bring about significant social and economic losses, estimated at between 3 and 7% of GDP according to an ILO pilot study of ten low and middle-income developing countries.[63] The cost of disability benefits alone amounts to up to 4-5% of GDP in some countries.[64] However, investment in more effective strategies for inclusion can yield returns to society.

The main reasons for such low participation in the labour market (having as a consequence the untapped labour force hidden in this group) are the persistent discrimination in the employment field and the lack of positive action, support services, inadequate transport, etc. One of the biggest barriers for ensuring employment opportunities for people with disabilities is the exclusion of people with disabilities from education, in particular from higher education and vocational training programmes.

Women with disabilities have even less access to employment and education. Without economic independence, they often depend on disability benefits and on their families. Mothers with disabilities have additional problems in obtaining and maintaining a job.

Article 27[65] of the UNCRPD is very clear on the principles that must be followed regarding the employment of people with disabilities. It sets the most recent and detailed standards of access to employment for persons with disabilities, including prohibition of discrimination with regard to all forms of employment; protection of the rights to fair and favourable conditions of work, equal opportunities and equal remuneration, safe and healthy working conditions, and protection from harassment.

The DAP 2016-2020 will have to include those principles to be implemented at the various levels of policy-making. An appropriate strategy should ensure that job retention is at the core of the initiatives. Job retention strategies should combine issues such as vocational rehabilitation, life-long learning, supported employment, etc. All these services should accompany measures in the field of employment for people with disabilities.

The strategies recommended by the CoE DAP 2016-2020 should primarily support the employment of people with disabilities in the mainstream labour market. To this end, workers with disabilities must be provided with sufficient accessible services to enter the labour market and adequate support services to develop their professional career. It is important to give thought to the flexible arrangements needed by workers with disabilities, in terms of reasonable accommodation, working hours and adaptable working methods. It is also important to ensure that the support provided in the field of employment is based on an assessment of the abilities of the disabled worker and not on an assessment of the lack of skills. The latter results in support systems designed to compensate for the disability rather than to enhance the abilities of the disabled person.

Other types of work in “sheltered employment companies”[66] should be supported in view of their social utility as transitional instruments for workers with disabilities to enter the mainstream labour market, providing employment opportunities for those who – because of the extent of the support required – do not have access to the mainstream labour market. The rights of disabled workers in this type of undertaking should be the same as those for any other worker in society, which is not currently the case in some countries where disabled workers in sheltered employment companies are not considered workers, and there continue to be barriers preventing them from moving into the mainstream labour market.

The risks of the benefit trap are considerably higher when active inclusion strategies are designed at the expense of a permanent loss of disability benefits. The system of activation through compulsory and intimidating methods constitutes a disincentive to taking steps towards employment.

Efforts are required to empower those at the margins of the labour market and of society to reduce their lack of economic security, improve their living standards and by implication, those of their families and communities. This can be achieved by addressing the physical, social, economic and cultural barriers that prevent people with disabilities from accessing decent work and from contributing to the development of their economies and societies. These include the lack of access to education, the lack of skills required in the labour market, the lack of access to employment and the lack of social protection, as well as inaccessible built environments, information and public transport and the lack of affirmative action and reasonable accommodation provisions in laws and policies.

Recommendations

The DAP 2016-2020 should help enable people with disabilities to access decent work, and emerge from poverty. To this end, it should call on the CoE member states to adopt active inclusion policies for disabled workers in the mainstream labour market, through the following measures:

access of persons with disabilities to working skills development in education, vocational training and life-long learning;
access of persons with disabilities to public and private sector employment, with the active involvement of employers and the support of trade unions;
development of viable self-employment, social enterprises and co-operatives, including through the availability of related support services and access to credit;
decent work opportunities in the rural and informal economies, where people with disabilities frequently seek their livelihoods;

flexible arrangements for disabled workers, including reasonable accommodation of the working environment and adjustment of working hours;

job retention strategies, including ongoing vocational training, training for employers and colleagues and support in employment for disabled workers;
secure transition from job to job;
work opportunities for women and girls with disabilities;
specific support measures for those facing particular disadvantages, such as women and girls with disabilities, persons with intellectual and psycho-social disabilities and persons with intensive support needs;
suitable measures to support mothers with disabilities or mothers of children with disabilities in their search for employment and efforts to retain employment, such as:
- access to childcare, including through financial support,
- priority access to suitable public childcare systems,
- incentives to companies to set up childcare facilities in their premises and to give priority to women with disabilities and mothers of children with disabilities,
effective consultation of persons with disabilities and their representative organisations in designing and implementing employment programmes, so that relevant issues are appropriately taken into account;
capacity-building programmes for those involved in developing policies and providing services that are inclusive of or targeted at persons with disabilities, in particular those involving vocational guidance, vocational training, placement and the development of employment opportunities for persons with disabilities, to ensure that they are aware of issues relating to disability inclusion and the rights of persons with disabilities;
monitoring progress in the labour market situation and the living standards of persons with disabilities by gathering reliable, comparable data through ongoing labour market surveys, censuses and other data-gathering approaches.

12. Health

Equal access to healthcare is a key issue in securing basic living conditions for people with disabilities so that they can live their lives on an equal basis with others in the community. People with disabilities develop the same health problems that affect the general population, but they may be even more susceptible to developing chronic conditions. Some people with developmental disabilities show signs of premature ageing in their 40s and 50s and they may experience age-related health conditions more frequently. For example, people with Down syndrome have a higher incidence of Alzheimer disease than the general population, while people with intellectual impairments (unrelated to Down syndrome) have higher rates of dementia. The ageing process and associated changes (presbycusis, loss of strength and balance, osteoporosis) may have a greater impact on people with disabilities. People with learning disabilities and people with long-term mental health disorders have a lower life expectancy,[67] because of:

higher and earlier development of chronic health conditions (obesity, heart diseases, respiratory diseases, diabetes, stroke, breast and bowel cancer) than in the general population;
higher risk of unintentional injury from falls, burn-related injuries and injuries from crashes in persons with autism and attention deficit hyperactivity;
greater risk of violence and sexual abuse against people with disabilities, especially for adolescents, women and institutionalised men and women with intellectual disabilities.

In spite of near-universal coverage of national health systems, there are still major health inequalities across countries and regions in meeting the complex and diverse healthcare needs of people with disabilities. Social deprivation and poverty are major contributors to these inequalities. Member states are not obliged to reimburse the extra costs related to treatment, such as accommodation and travel costs. This is likely to have a disproportionately high deterrent effect on those persons who use personal assistance, persons with intensive support needs or children with disabilities who must be assisted by their parents, as well as persons who must pay extra for accessible transport or accommodation.

In addition, persons with disabilities tend to have unequal access to healthcare services and to receive healthcare of lower quality that is not adapted to their needs because of a number of barriers preventing them from fully enjoying their right to health on an equal basis with others as enshrined in Article 25 of the UNCRPD.[68] Even where services do exist, people with disabilities encounter a range of physical, communication, information, and co-ordination barriers when they attempt to access healthcare services: people with disabilities indicate cost (70.5%), lack of services in the area (52.3%), and transportation (20.5%) as the top three barriers to using health facilities.[69]

A 2013 report by the EU Fundamental Rights Agency (FRA) confirms and documents the strong correlation between disability and ill health. This is particularly noticeable for women with disabilities, 23.7% of whom reported ‘very bad health’. In comparison, fewer than 0.1% of women and men without disabilities report the same.[70] Research also shows a higher prevalence of psycho-social disabilities and mental health problems among women, particularly migrant women.[71] The inaccessibility of healthcare facilities and the lack of accessible information about healthcare services and entitlements have been identified as major barriers in accessing healthcare by European patients with disabilities.[72] Physical barriers may be related to the architectural design of healthcare facilities, to medical equipment or transportation. Barriers to facilities include inaccessible parking areas, variable accessibility to buildings (hospitals, health centres), poor signage, narrow doorways, internal steps, inadequate bathrooms and inaccessible medical equipment. Women with disabilities face significant barriers to access gynaecology services. Women with mobility difficulties are often unable to access breast and cervical cancer screening because examination tables are not height-adjustable and mammography equipment only accommodates women who are able to stand.

Information given to persons with disabilities in relation to access to health is of poor quality and is therefore very difficult to use.[73] People with disabilities identify limited access to general practice lists, difficulty negotiating appointment systems, inaccessible information, poor communication, and diagnostic overshadowing as major barriers to access healthcare.

Common barriers include the attitudes, lack of flexibility, knowledge and skills of health-service professionals. Training programmes for healthcare workers and general practitioners rarely address the health needs of people with disabilities, and this has a significant impact on their ability to provide healthcare for people with disabilities. Healthcare providers who lack adequate knowledge and skills on how to effectively manage the healthcare needs of people with disabilities may feel uncomfortable about treating them. Clinical decision-making may be influenced by negative attitudes and assumptions.[74] Limited knowledge and understanding of disability among healthcare providers sometimes leads to inadequate examinations and uncomfortable and unsafe experiences for people with disabilities. People with disabilities are more than twice as likely to report finding healthcare provider skills inadequate to meet their needs, four times more likely to report being treated badly and nearly three times more likely to report being denied care.

Limited access to health promotion, screening and preventive services are also significant barriers. Health promotion activities seldom target people with disabilities, and many experience multiple barriers to participation, though evidence shows that health promotion interventions such as physical activities are beneficial for people with disabilities. The oral health of many people with disabilities is poor, and access to dental care limited. Adolescents and adults with disabilities are more likely to be excluded from sex education programmes. As a consequence they, and particularly women and girls, are more at risk of abuse, undesired pregnancy or lack of access to contraception. Women with disabilities are systematically deprived of their equal right to be mothers in states whose legal systems allow forced sterilisation or forced abortion, or because of prejudices on their capacity to have and take care of, children. As a consequence, they are coerced – either directly or indirectly, because of the lack of necessary support – into being sterilised or having abortions, or they are deprived of the legal custody of their children in separation or divorce proceedings.

There are barriers to accessing long-term care services which particularly affect groups of persons with disabilities. People with mental health conditions, learning or intellectual disabilities and those with complex or severe care needs face increased difficulties in accessing adequate care and support due to the unavailability of care, limited choice and legal barriers. Denying people with disabilities the right to exercise their legal capacity may prevent them from taking an active role in their own health care.[75] Institutionalisation prevents persons with intellectual and psycho-social disabilities from having access to quality healthcare services. As a consequence of unmet healthcare needs, persons with disabilities, and in particular those with intellectual disabilities or with long-lasting mental health problems, have a lower life expectancy compared with the general population.[76]

Guaranteeing access to high-quality health care is a key objective of healthcare and social protection systems. In European countries it represents the second largest social expenditure item after pensions. Article 25 of the UNCRPD sets out an obligation to recognise the right of persons with disabilities to the enjoyment of the highest attainable standard of health and to ensure access for persons with disabilities to the same range, quality and standard of free or affordable healthcare and programmes, designed to meet both the specific needs and the general health needs of persons with disabilities. Ensuring the availability, affordability and accessibility of healthcare services and programmes as well as disabled peoples’ awareness of the services, including in rural and remote communities, is essential to improving their access to healthcare.

A broad range of modifications and adjustments should be implemented to facilitate access to healthcare services, for example changing the physical layout of clinics to provide access for people with mobility difficulties or communicating health information in accessible formats such as Braille and other augmentative/alternative communication modes and means. Information, training and peer support should be provided to empower people with disabilities to maximise their health. Governments can improve healthcare and outcomes for people with disabilities by developing and adopting healthcare standards relating to the care of persons with disabilities, evidence-based guidelines for comprehensive assessments, treatment, and follow-ups to persons with disabilities, enforcement mechanisms and financial incentives to encourage healthcare providers.

Education and training for healthcare workers about disability is an important priority to increase awareness of the healthcare needs of people with disabilities and improve access to services. Education on how to meet the health needs of persons with disabilities should be integrated into undergraduate and continuing education for all healthcare professionals. Healthcare workers should be taught the causes, consequences, and treatment of disabling conditions, the rights-based approach to health-care, positive attitudes, and respect for the inherent dignity of persons with disabilities. Respectful, knowledgeable and supportive responses to people with disabilities from healthcare providers are vital to prevent negative experiences in the health system, including insensitivity or disrespect, which may result in a distrust of health providers and failure to seek care. Community workers should be trained so that they can play a role in preventive healthcare services.

Equal access to a network of specialised services should also be ensured as close as possible to where the person lives, including in rural areas, for the identification of disabilities, diagnosis that is as early as possible and timely appropriate intervention which is tailored to the needs of each person and aimed at preventing further disabilities and at fostering the full development of individual potential.

Recommendations

In conformity with Article 25 of the UNCRPD; the DAP 2016-2020 should call on the CoE member states:

1. to secure for persons with disabilities the same variety, quality, and standard of free and affordable health care as that provided to others by:

mainstreaming disability in their national public health programmes,
making the health care environment and diagnostic devices accessible for persons with reduced mobility,
providing accessible information, including a national map of available services and screening and prevention campaigns;
providing reasonable accommodations in healthcare services, where needed, including through priority access to emergency services, individual support and the use of alternative and augmentative communication means and modes;
including the disability perspective in the curricula of healthcare workers on disability issues, including the rights-based approach to healthcare for people with disabilities and how to detect and recognise symptoms of and to deal with general health problems in people with disabilities;
combating prejudices regarding parenthood for persons with disabilities among healthcare providers;

2.to provide access to detection, diagnosis and intervention for disabilities, including:

early diagnosis and intervention services as close as possible to where people live, including in rural areas;
training on the use of suitable instruments for diagnosis and individual functional assessment and on sound intervention strategies by healthcare professionals working in disability-specific healthcare services;
training on early detection of disabilities among general healthcare professionals, in particular paediatricians and family doctors;

3.to address the specific healthcare needs of women and girls with disabilities, including through:

access to appropriate information and education on sexual and reproductive health;
equal access to gynaecology services with accessible mammography and other medical devices for women with reduced mobility;
including the gender perspective of disability in the curricula of healthcare workers and in the specific training of professionals working in specialised services for disability.

13. Habilitation and re-habilitation

In accordance with the social model of disability, rehabilitation and habilitation should not be understood in the purely medical or narrow sense of rehabilitation, but in the perspective of article 26[77] of the UNCRPD, as “appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain their maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life”. Improving the lives of people with disabilities and ensuring that they are able to achieve a higher level of independence and self-determination should therefore be the ultimate goals of habilitation and re-habilitation. The distinction between habilitation and rehabilitation made by Article 26 of the UNCRPD refers to helping those who are born with or acquire disability early in life to develop maximal functioning, as opposed to assist those who have experienced a loss in function later in life to regain maximal functioning.[78]

There are no data at European level on the need for rehabilitation services, the type and quality of measures provided, and estimates of unmet needs. Data on rehabilitation services are often incomplete and fragmented. When data are available, comparability is hampered by differences in definitions, classifications of measures and personnel, populations under study, measurement methods, indicators, and data sources.[79] A 2005 global survey[80] of the implementation of the UN Standard Rules on the Equalisation of Opportunities for Persons with Disabilities found that:

in 48 (42%) of 114 countries that responded to the survey, rehabilitation policies were not adopted;
in 57 (50%) countries legislation on rehabilitation for people with disabilities was not passed;
in 46 (40%) countries there were no rehabilitation programmes.

As a consequence of prevalent social stereotypes and prejudices assigning lower value to women because they are considered less productive, social roles confining them to the home, housekeeping duties, caring for others and performing tasks which are economically unacknowledged, overprotection by the family and a lack of self-esteem, among other factors, women and girls with disabilities enjoy lower levels of access to habilitation and rehabilitation services and programmes.

Several countries have satisfactory legislation and related policies on rehabilitation, but the implementation of these policies, and the development and delivery of regional and local rehabilitation services, have fallen short. Systemic barriers include:

the lack of strategic planning, resulting in an uneven distribution of service capacity and infrastructure;[81]
a lack of resources and infrastructure, particularly in rural and remote communities, reducing access to rehabilitation and the quality of services;[82]
the lack of agency responsible for administering, co-ordinating, and monitoring services;[83]
inadequate health information systems and communication strategies, resulting in ineffective co-ordination of responsibilities among providers ;
absence of engagement with representative organisations of persons with disabilities in the design, implementation, and evaluation of rehabilitation programmes.[84]

A shortage of appropriate social and habilitation/rehabilitation services and a lack of co-ordination across relevant authorities, agencies and providers can affect the dependency of these people much more than the nature or severity of their impairments. Unmet rehabilitation needs can delay or prevent autonomy and self-determination, limit activities, restrict participation, cause deterioration in health, increase dependency on others for assistance, and decrease quality of life. These negative outcomes can have broad social and financial implications for individuals, families, and communities.[85]

Habilitation and rehabilitation can be defined as a set of measures that assist individuals who experience, or are likely to experience, disability to achieve and maintain optimal functioning in interaction with their environments. The outcomes of rehabilitation for persons with disabilities should match the goals specified by the ten guiding principles of the UNCRPD: challenge discrimination and improve accessibility for equality of opportunity, facilitation and empowerment to secure the inherent dignity, autonomy and independence of the person, and full and effective participation and inclusion in society.

The paradigm shift from a medical model towards a social model of disability does not mean that the health system is exempt from ensuring the right to habilitation or rehabilitation for persons with disabilities. On the contrary, this means that rehabilitation for persons with disabilities should not be aimed at erasing diversity in order to achieve “normality”. This means that habilitation and rehabilitation should help persons with disabilities to achieve their fullest individual potential by alleviating difficulties with which they are confronted, either stemming from society or from their condition. Habilitation and rehabilitation therefore also include making changes to the individual’s environment.

Countries that do not already have them should consider introducing policies and legislation on rehabilitation, especially those countries that are signatories to the UNCRPD, as they are required to align national law with Article 26 of the UNCRPD. Policy responses should emphasise early intervention and the use of rehabilitation to enable people with a broad range of disabilities to improve or maintain their level of functioning, with a specific focus on ensuring participation and inclusion. Rehabilitation professionals must be aware of the role of rehabilitation in fostering and supporting the participation and inclusion of people with disabilities in society. (Re)habilitation services should be provided as close as possible to communities where people live, including in rural areas.

The needs for (re)habilitation depend on the individual circumstances of the person and change over time, according to age and environmental demands. New (re)habilitation service models are therefore needed which allow for flexibility, personalised support and person-centred planning. In all cases rehabilitation should empower a person with a disability and his or her family by developing knowledge and skills for self-help, care, management, and decision-making. Rehabilitation is always voluntary, and some individuals may require support with decision-making about rehabilitation choices. A habilitation and rehabilitation process that begins early produces better functional outcomes for almost all disability conditions. The effectiveness of early intervention is particularly marked for children with, or at risk of, developmental delays.[86]

The (re)habilitation process should therefore:

start as timely as possible after the identification of a disability condition,
be voluntary,
be individually tailored, based on identification of a person’s aspirations, wishes and needs as well as environmental barriers and resources,
define rehabilitation goals and implementation strategies and measures,
involve the full range and co-ordination of interventions needed,
assess on a regular basis the effects in enhancing activity, inclusion and participation across a range of areas, including communication, mobility, self-care, education, employment, and quality of life.

For children and adults with disabilities who are dependent on their caregivers and family, (re)habilitation plans must consider the situation of the family as a whole, including the family’s attitudes and their willingness and ability to participate in the (re)habilitation process. The involvement of parents in the individual assessment and planning process is critical in order to provide information on the child’s strengths and adaptive behaviour in everyday living as well as in translating the assessment results into practical implications for intervention.[87]

A growing number of persons with disabilities need a high level of support and positive measures to achieve independence, social inclusion and participation. These positive measures include rehabilitation or habilitation programmes and services. For some people with disabilities, including in particular those with developmental disabilities, such as autism spectrum disorders, access to social habilitation programmes is an essential precondition in order to overcome their major difficulties, to live their everyday lives in dignity and equality, and to achieve independence, the capacity to assert their own preferences and choices, inclusion and participation in education, in the labour market and in their communities, just as accessibility is an essential precondition for other persons.

For these persons, (re)habilitation is not an option. Denying them appropriate and comprehensive habilitation programmes can result in many people becoming unnecessarily dependent on others. Ensuring persons with disabilities access to timely, proper and continuous (re)habilitation services and programmes should therefore be seen not only as an obligation, but also as an opportunity for society as a whole to secure sustainable development, democracy and social cohesion.

The delivery of (re)habilitation services for people with disabilities is a triangle comprising the user, the service provider and the public authorities (either financing directly or indirectly, through a concession to a private operator or delivering the public service themselves). This requires a special legal framework and quality management measures to ensure effective interaction between the various stakeholders. Public authorities should ensure that habilitation and rehabilitation services fulfil the basic principles of:

good governance,
quality,
safety,
affordability,
universal access,
equal treatment,
comprehensiveness,
continuous learning of staff and users,
partnership with
- the representative organisations of persons with disabilities in designing and monitoring services,
- other stakeholders involved in the implementation of programmes.

The quality criteria of habilitation and rehabilitation services should be person-centred and geared to results for the person in terms of:

respect of the users’ rights, including the right to make decisions and choices, with the independent support of a trusted support person where needed,
achievement of the highest level of independence, inclusion and participation in society of the persons concerned,
participation of the persons concerned in drafting and monitoring their individual plans,
continuous assessment of the quality of life of the persons concerned and of the satisfaction of the persons concerned and their families.

Recommendations

The CoE DAP 2016-2020 should call on the CoE member States to overcome the barriers for persons with disabilities to access habilitation and rehabilitation services and programmes, including through the following measures:

reforming re-habilitation laws, policies, and delivery systems in accordance with the UNCRPD principles and obligations;
developing a national rehabilitation plan;
developing and securing funding mechanisms, including relocating funds from hospital-based to community-based interventions;
providing, expanding or strengthening a network of suitable (re)habitation services and programmes which are:
- aimed at achieving the highest level of individual potential, independence and dignity,
- flexible and individually tailored to the person’s needs, wishes and circumstances,
- based on an individual assessment of needs and strengths,
- gender sensitive, taking into account the specific needs of women and girls with disabilities,
- co-ordinated and multidisciplinary to improve their effectiveness and efficiency;[88]
improving economies of scale in the purchasing and production of assistive devices to enhance the quality/cost ratio;
increasing human resources for rehabilitation, including through training, fair working conditions and retention strategies for rehabilitation personnel;
developing compulsory training on the human rights, dignity and autonomy of persons with disabilities in the curricula of all (re)habilitation professionals;
expanding and decentralising rehabilitation service delivery;
increasing the use and affordability of technology and assistive devices;
developing and adopting good practice guidelines:
- on practices and procedures respecting the inherent dignity and rights of children and adults with disabilities and to prevent abuse,
- on evidence-based or consensus-based habilitation and rehabilitation strategies;
developing person-centred and result-oriented quality management systems;
addressing gender-related inequalities in access to habilitation and rehabilitation services and programmes;
addressing the specific habilitation and rehabilitation needs of women and girls with disabilities;
involving persons with disabilities in drafting and monitoring their individual habilitation and rehabilitation plans;
involving families of children with disabilities and adults who need support to take decisions and choices in drafting, implementing and monitoring individual habilitation and rehabilitation plans,
involving representative organisations of persons with disabilities in designing and monitoring habilitation and rehabilitation services and programmes.

14. Social protection

Economic and social policies must include specific measures to set up and strengthen social protection systems for persons with disabilities. Article 28 of the UNCRPD[89] is fairly clear on the minimum requirements to achieve the objective of an adequate standard of living and social protection.

EDF research in the area of minimum income and its relation to disability benefits show that there are enormous differences across EU countries in terms of the legal basis, eligibility criteria and the amount of benefits provided to disabled persons.[90] While the research calculated an average of the net current minimum income for a single disabled person living alone of around €562, an analysis of the results showed that people with disabilities feel that the minimum income needed to cover the basic needs of a disabled person living alone is €904. This figure is almost twice as much and as a consequence we can conclude that minimum income schemes are failing to take on board the entire range of needs of people with disabilities. It is important to mention that minimum incomes will vary greatly across countries, as does the cost of living. In the UK, research indicates that on average, disabled people of working age face additional costs on top of normal expenditure of more than a quarter above the expenditure for non-disabled people.[91] When the adjusted extra cost of disability is factored in, the real poverty line could be higher for disabled people, with well over half of disabled people in the UK living on less than 60% of the median national income.

From the answers collected, it appears that around 93.6% of disabled people receive inadequate income to cover their needs. The extra costs can range from +10% to over 40%. The areas where people with disabilities face higher costs due to disability are the following:

Home alterations
Home help
Personal assistance
Speech therapy
Insurance (car and home)
Disability aids: wheelchairs, special beds, cushions and shower chair
General living costs: food, clothes, laundry, electricity, heating, phone bills
Home maintenance and holidays
Transport: taxi fares, travel to hospital
Medicines

Even states that support extra costs linked to disability aids and home alterations very seldom cover or cover adequately the extra costs relating to home help, personal assistance, speech therapy, insurance (car and home) food, clothes, laundry, electricity, home maintenance, holidays, transport, heating, phone bills, and medicines (the last one accounting for over 40% of extra costs compared with those for non-disabled people). Also in many cases income schemes fail to take into account the financial strain imposed on families, in particular when one of the members has to leave the labour market in order to care for a disabled person in the household. Household income analysis should include the fact that there is a dependent person in the family and the extra impact this has in terms of the family income required.

Moreover, EDF research shows that a large proportion of disabled people state that they are either in a very poor (27.5%) or poor (50%) situation. The results of the study are also supported by other research findings, which state that a considerable proportion of disabled people are in the lowest tenth of the income distribution. Women with disabilities are more likely to be at risk of relative poverty – defined as having disposable income below 60% of the median in the country in which they live.[92] The juxtaposition of factors such as the lack of competitive vocational training, digital illiteracy, high incidences of inactivity in the labour market, lack of access to the labour market, unpaid work, the salary gap between men and women, barriers caused by work-life imbalance, women’s higher life expectancy and, in general terms, the various forms of discrimination on the grounds of gender and disability, result in women with disabilities being one of the poorest social groups.

The economic crisis and austerity measures have a greater impact on the standard of living of persons with disabilities compared with the general population.[93] Evidence based on EU-SILC statistics supports the contention that people with disabilities face a higher risk of poverty than people without disabilities.[94] In 2011, 31% of persons with disabilities aged 16 and over lived in households at risk of poverty or social exclusion as compared with 21% for persons without disabilities. The risk of falling into poverty is increasing among families where additional costs due to a disability have to be taken into account. Increases in co-payment requirements and the costs of care may put appropriate services and medication beyond the means of many families.[95] The degree of disability is an important factor to consider, as at EU level the percentage of severely disabled people living in households at risk of poverty or social exclusion is 49% compared with 22% for persons without disabilities.[96]

People with disabilities are still receiving inadequate services to ensure their inclusion and full participation in society. There are several problems linked to this issue:

The process of devolving social services. Local authorities have become the main social service providers for people with disabilities. The devolution process is based on the philosophy that the closer the authority is to the person the better this service will be provided. This principle may be fair when sufficient resources are systematically transferred to ensure the capacity of the local authority to provide quality services.
Regional inequalities in access to and provision of services. This means that depending where the persons with disabilities live they will have better or worse standards of living. There is clear discrimination in access to services between urban and rural areas.
In the majority of countries, persons with disabilities cannot choose if they want a certain service or not. They are obliged to take the service provided at national/local level, even if they dislike the provider, conditions or quality.

A coherent strategy for social inclusion should address three main aspects: income support, job or vocational training opportunities and enabling social services. The minimum income for people with disabilities is of utmost importance. One of the objectives of minimum income schemes should be that people with disabilities can live in dignity and fully participate in society. The rationale underlying minimum income schemes should take on board the fact that people with disabilities need compensation for inaccessibility within society and for the discrimination faced in all areas of life. A benefit system should make a distinction between disability benefits and compensation for extra costs. The former should be maintained throughout the life of the person with disabilities regardless of his or her situation (employed, unemployed, inactive, retired, etc.). It is important to bear in mind that the concept of the extra-costs of disability has been defined as “the amount it costs a disabled person to achieve the same standard of living as a non-disabled person”.[97] The extra-costs should therefore be a flexible concept linked to the evolution of the impairment and the personal situation of the disabled person (e.g. if the person begins to work, extra-costs may increase or decrease).

Co-ordination between social security schemes and minimum income schemes should be enhanced at national level in order to ensure that there are no grey areas of needs not covered by any of those schemes. At the same time, flexible schemes should allow people with disabilities to recover their benefits once they can no longer participate in the labour market. Efforts must be made to ensure that families and social networks do not encourage mothers of children or adults with disabilities and women with disabilities to stay at home, in order to have cheap care ensured. All policy measures to combat poverty should include persons with disabilities, consider the gender dimensions and underline the importance of incorporating women with disabilities in the labour market as a key factor in the fight against the poverty and social exclusion they experience.

Social services are important tools for the implementation of public policies in the field of social protection, non-discrimination, the fight against poverty and exclusion. What differs from other service users is that people with disabilities need a social service to enjoy all other services (since these are not generally designed for all, and in particular not for people with disabilities and intensive support needs). They respond to the social needs and social deficits, especially of marginalised individuals and groups. Social services address not only social needs, such as housing, social care for children and the elderly, social security or other types of social protection. In a wider sense they cover a broad and diversified range of services such as education, basic healthcare, vocational training and access to employment, which are intended to improve standards of living and enhance the capacities of individuals for full inclusion and participation in society. Social services are therefore of the utmost importance to ensure fundamental rights for people with disabilities, as without those services people with disabilities would not be in a position to be included in society and to fully participate.

Recommendations

The DAP 2016-2020 should call on member states to develop:

social protection systems that:
- include people with disabilities on an equal basis with others;
- take their specific requirements into account in defining benefits, including schemes or programmes that guarantee income security, social health protection and other mechanisms to ensure universal health coverage, as well as schemes and programmes that facilitate their participation in employment;
programmes for poverty reduction that systematically include persons with disabilities, including in the field of youth employment and rural development;
three different kinds of social services:

General social services (such as those for other vulnerable groups). These services have to be designed for all in order to ensure universal access including people with disabilities (e.g. employment services);
Specific, individually tailored social services for people with disabilities, such as social and vocational habilitation and rehabilitation, etc.
Support services that enable people with disabilities to enjoy other mainstream services (e.g. interpretation for deaf people);

quality assurance of social services for people with disabilities, through the following measures:

the adoption of minimum quality standards;
providing the person with the opportunity and capacity to choose the service delivery according to his/her preferences and needs;
ensuring services have the necessary capacities and financial resources;

structured dialogue with representative organisations of persons with disabilities, including consultation with representative organisations of women with disabilities, on social protection strategies and measures, as well as on the design, delivery and monitoring of social services for persons with disabilities.

15. Reference documents

Academic Network of European Disability experts (ANED): The implementation of EU social inclusion and social protection strategies in European countries with reference to equality for disabled people, 2009

Autism-Europe: The Right to Healthcare and Habilitation for Persons with ASD. A toolkit for parents, self-advocates and advocacy organisations, 2009

Congress of Local and Regional Authorities of the Council of Europe: Report on promoting equal opportunities for people with disabilities and their participation in political and public life, 2014

Council of Europe: Disability Action Plan 2006-2015, Mid-term Review Report, adopted by the European Co-ordination Forum for the Council of Europe Disability Action Plan 2006-2015 (CAHPAH), 2010

European Disability Forum: Draft EDF Alternative Report to the UN Committee on the Rights of Persons with Disabilities, 2014

European Disability Forum: EDF draft general comment on Article 12 CRPD, 2014

European Disability Forum: Living in the Community for all People with Disabilities, 2014

European Disability Forum: Manifesto on the European Elections 2014: The Key Priorities of the Disability Movement, 2014

European Disability Forum: EDF Position Paper Towards a European Accessibility Act, 2013

European Disability Forum: EDF Position on the Proposal for a Directive on the Accessibility of Public Sector Bodies’ Websites (COM (2012) 721 final), 2013

European Disability Forum: 2nd Manifesto on the Rights of Women and Girls with Disabilities in the European Union, 2011

European Disability Forum: Proposal for a European Mobility Card, 2011

European Disability Forum: Freedom Guide: Paving the way towards free movement for persons with disabilities, 2011

European Disability Forum: Equal recognition before the law and equal capacity to act: understanding and implementing Article 12 of the UN Convention on the Rights of Persons with Disabilities, 2009

European Disability Forum: Inclusive education. Moving from words to deeds, 2009

European Disability Forum: Health Inequalities – Policy and research action –

The Role of the EU Framework programme for Research, Health Forum Gastein, 2009

European Disability Forum: EDF Declaration on Women with Disabilities, 2008

European Disability Forum: EDF response to the European Commission communication: “Modernising social protection for greater social justice and economic cohesion: taking forward the active inclusion of people furthest from the labour market”, 2008

European Disability Forum: EDF response to the European Commission communication: “Opportunities, access and solidarity: towards a new social vision for 21st century Europe, 2008

European Disability Forum: EDF observations on the proposal for a Council Directive on implementing the principle of equal treatment between persons irrespective of religion or belief, disability, age or sexual orientation (Article 13 Directive), 2008

European Disability Forum: Toolkit on the national strategy reports on social protection and social inclusion 2008-2010, 2007

European Disability Forum: Achieving equal opportunities for persons with complex dependency needs, 2007

European Disability Forum: Mainstreaming of disability in regional and local policies, 2007

European Union Fundamental Rights Agency: The right to political participation of persons with disabilities, 2014

European Union Fundamental Rights Agency: Legal capacity of persons with intellectual disabilities and persons with mental health problems - Report, 2013

European Union Fundamental Rights Agency: Factsheet – Inequalities and multiple discrimination in access to and quality of healthcare, 2013

European Union Fundamental Rights Agency: Choice and control: the right to independent living, 2012

European Union Fundamental Rights Agency: Involuntary placement and involuntary treatment of persons with mental health problems, 2012

European Union Fundamental Rights Agency: The right to political participation of persons with mental health problems and persons with intellectual disabilities – Report, 2010

International Labour Office: Disability and Development Priority Issues and Recommendations for Disability Inclusion in the Post 2015 Agenda – World of Work, 2014

United Nation Committee on the Rights of Persons with Disabilities: Draft general comment on Article 12 on equal recognition before the law, 2014

[1] WHO/World Bank 2011 World Report on Disability, Geneva

[2] http://www.un.org/disabilities/convention/conventionfull.shtml

[3] Council of Europe Disability Action Plan 2006-2015 (Recommendation Rec(2006)5): Mid-term Review Report, adopted by the European Co-ordination Forum for the Council of Europe Disability Action Plan 2006-2015 (CAHPAH), Strasbourg, 27-29 September 2010

[4] As of September 2014, 41 of the 47 CoE member states are parties to the UNCRPD.

[5] Academic Network of European Disability Experts (ANED): The implementation of EU social inclusion and social protection strategies in European countries with reference to equality for disabled people. Isilda Shima and Ricardo Rodrigues (European Centre for Social Welfare Policy and Research), May 2009

[6]UNCRPD - Article 4 - General obligations

1. States Parties undertake to ensure and promote the full realisation of all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability.

[7] UNCRPD - Article 6 - Women with disabilities

1. States Parties recognise that women and girls with disabilities are subject to multiple discrimination, and in this regard shall take measures to ensure the full and equal enjoyment by them of all human rights and fundamental freedoms.

2. States Parties shall take all appropriate measures to ensure the full development, advancement and empowerment of women, for the purpose of guaranteeing them the exercise and enjoyment of the human rights and fundamental freedoms set out in the present Convention.

[8] UNCRPD – Preamble - (j): Recognising the need to promote and protect the human rights of all persons with disabilities, including those who require more intensive support.

[9] Recommendation CM/Rec(2011)14 of the Committee of Ministers to member states on the participation of persons with disabilities in political and public life (Adopted by the Committee of Ministers on 16 November 2011 at the 1126th meeting of the Ministers’ Deputies)

[10] UNCRPD - Article 4. 3: In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organisations.

[11] Council of Europe Disability Action Plan 2006-2015 (Recommendation Rec(2006)5): Mid-term Review Report.

[12] UNCRPD - Article 29 - Participation in political and public life

States Parties shall guarantee to persons with disabilities political rights and the opportunity to enjoy them on an equal basis with others, and shall undertake:

(a) to ensure that persons with disabilities can effectively and fully participate in political and public life on an equal basis with others, directly or through freely chosen representatives, including the right and opportunity for persons with disabilities to vote and be elected, inter alia, by:

(i) ensuring that voting procedures, facilities and materials are appropriate, accessible and easy to understand and use;

(ii) protecting the right of persons with disabilities to vote by secret ballot in elections and public referendums without intimidation, and to stand for elections, to effectively hold office and perform all public functions at all levels of government, facilitating the use of assistive and new technologies where appropriate;

(iii) guaranteeing the free expression of the will of persons with disabilities as electors and to this end, where necessary, at their request, allowing assistance in voting by a person of their own choice;

(b) to promote actively an environment in which persons with disabilities can effectively and fully participate in the conduct of public affairs, without discrimination and on an equal basis with others, and encourage their participation in public affairs, including:

(i) participation in non-governmental organisations and associations concerned with the public and political life of the country, and in the activities and administration of political parties;

(ii) forming and joining organisations of persons with disabilities to represent persons with disabilities at international, national, regional and local levels.

[13] FRA, Fundamental Rights Agency: The right to political participation of persons with mental health problems and persons with intellectual disabilities, October 2010

[14] Recommendation CM/Rec(2011)14 of the Committee of Ministers to member states on the participation of persons with disabilities in political and public life (adopted by the Committee of Ministers on 16 November 2011 at the 1126th meeting of the Ministers’ Deputies)

[15] Revised Interpretative Declaration to the Code of Good Practice in Electoral Matters on The Participation of People With Disabilities In Elections (adopted by the Council for Democratic Elections at its 39th meeting (Venice, 15 December 2011) and by the Venice Commission at its 89th plenary session (Venice, 16-17 December 2011))

[16] CoE Recommendation CM/Rec(2011)14 “All citizens should be empowered to fully participate in political and public life. As regards persons with disabilities, the recognition of their capacities, knowledge and expertise in making their own decisions and taking part in political and public life is a precondition for increasing their meaningful participation in the life of society […] Where persons with disabilities need assistance in order to vote or express their opinion, member states should ensure that they are allowed to be accompanied by a person of their choice, for example in the voting booth when casting their vote.

[17] UNCRPD – Article 12 – Equal recognition before the law

1. States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law.

2. States Parties shall recognise that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.

3. States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.

4. States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person’s circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the person’s rights and interests.

5. Subject to the provisions of this article, States Parties shall take all appropriate and effective measures to ensure the equal right of persons with disabilities to own or inherit property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit, and shall ensure that persons with disabilities are not arbitrarily deprived of their property.

[18] Human Rights Council, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Juan E. Mendez, A/HRC/22/53,

http://www.ohchr.org/Documents/HRBodies/HRCouncil/RegularSession/Session22/A.HRC.22.53_English.pdf

[19] Report of the UN Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment published A/63/175, 28 July 2008, paragraph 46

http://www.ohchr.org/EN/Issues/Disability/Pages/UNStudiesAndReports.aspx

[20] “Hate Crimes in the OSCE Region – Incidents and Responses”, Annual Report for 2010, Warsaw, November 2011, p 85; “Hidden in sight, inquiry into disability-related harassment, Equality and human rights commission, p. 5-8

[21] EDF Manifesto on the rights of women and girls with disabilities in the European Union, 2011, p.17, available at http://www.edf-feph.org/Page.asp?docid=26614&langue=EN

[22] European Union Fundamental Rights Agency, Report on involuntary placement and treatment of people with mental health problems, 2012, p. 29-31

[23] European Union Fundamental Rights Agency, Involuntary placement and involuntary treatment of persons with mental health problems, 2012, available online at:

http://fra.europa.eu/en/publication/2012/involuntary-placement-and-involuntary-treatment-persons-mental-health-problems (accessed 03.06.2014).

[24] European Union Fundamental Rights Agency, Report on involuntary placement and treatment of people with mental health problems, 2012, p. 41

[25] Common European Guidelines on the Transition from Institutional to Community-based care, European Expert Group on the Transition from Institutional to Community-based care, November 2012, p. 43 (available at

http://deinstitutionalisationguide.eu/)

[26] Council of Europe Commissioner for Human Rights, The right of people with disabilities to live independently and be included in the community, CommDH/IssuePaper (2012) 3, 12 March 2012, available at:

https://wcd.coe.int/ViewDoc.jsp?id=1917847 (accessed: 03.06.2014), p. 37

[27] EDF amendments to the draft report of the Committee on Civil Liberties, Justice and
Home Affairs jointly and the Committee on Women's Rights and Gender Equality <Titre>on the proposal for a directive of the European Parliament and of the Council establishing minimum standards on the rights, support and protection of victims of crime (COM(2011)0275 – C7‑0127/2011 – 2011/0129(COD)), 14 February 2012

[28] Article 2.3 of Directive 2010/64/EU

[29] Article 15 UNCRPD - 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.

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.

[30] Council of Europe Committee of Ministers, Recommendation Rec (2006) 5 on the Council of Europe Action Plan to promote the rights and full participation of people with disabilities in society: improving the quality of life of people with disabilities in Europe 2005-2015, available at:

http://www.coe.int/t/e/social_cohesion/soc-sp/Rec(2006)5%20Disability%20Action%20Plan.doc (accessed: 03.06.2014).

[31] Ibid., paragraph 3.13.vii.

[32] Numerous incidences of abuse, violence and exploitation have been uncovered in Romanian institutions funded by EU Structural Funds. See, for example, allegations of sexual violence, threats and forced labour at Tantava Institution for Integration through Occupational Therapy in Giurgiu, Romania, which received €500,000 in structural funds: Centrul de Resurse Juridice, Raport de Monitorizare: Centrul de Integrare Prin Terapie Ocupationala Tantava, Giurgiu (Romania, 2014), available at:

http://www.crj.ro/userfiles/editor/files/Tantava%20CENTRUL%20DE%20INTEGRARE%20PRIN%20TERAPIE%20OCUPA%C5%A2IONAL%C4%82%20(1).pdf (accessed 03.06.2014).

[33] Article 13 UNCRPD on Access to justice

1. States Parties shall ensure effective access to justice for persons with disabilities on an equal basis with others, including through the provision of procedural and age-appropriate accommodations, in order to facilitate their effective role as direct and indirect participants, including as witnesses, in all legal proceedings, including at investigative and other preliminary stages.

2. In order to help to ensure effective access to justice for persons with disabilities, States Parties shall promote appropriate training for those working in the field of administration of justice, including police and prison staff.

[34] The right of people with disabilities to live independently and be included in the community, p. 9 (Commissioner for Human Rights, Council of Europe, DH/Issue Paper, March 2012)

[35] Mansell J., Knapp M., Beadle-Brown J. and Beecham J. (2007) Deinstitutionalisation and community living – outcomes and costs: report of a European Study. Volume 2: Main Report. Canterbury: Tizard Centre, University of Kent

[36] Mapping exclusion: Institutional and community based services in the mental health field in Europe (Mental Health Europe and the Mental Health Initiative of the Open Society Foundation, November 2013)

[37] Article 19 UNCRPD:- Living independently and being included in the community.

States Parties to the present Convention recognise the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

(a) persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

(b) persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

(c) community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

[38] EDF submission to the UN Committee on the Rights of Persons with Disabilities on Article 9 ‘Accessibility’ UNCRPD (EDF, 15 March 2012); Focus on Article 19 of the UN Convention on the Rights of Persons with Disabilities (European Coalition for Community Living, August 2009)

[39] Inclusive Communities, Stronger Communities: Global report on Article 19, the right to live and be included in the community, p. 8 (Inclusion International, October 2012)

[40] See for example: Office of the High Commissioner for Human Rights (Europe Regional Office), Getting a life – living independently and being included in the community: legal analysis of the current use and future potential of the EU Structural Funds to contribute to the achievement of Article 19 of the UN Convention on the Rights of Persons with Disabilities (April 2012), available at: http://www.europe.ohchr.org/documents/Publications/getting_a_life.pdf (accessed 03.06.2014).

[41] European Year for Active Ageing and Solidarity between Generations 2012: Everyone has a role to play, p. 7 (AGE Platform, 2011); Getting a life: living independently and being included in the community, a legal study of the current use and future potential of the EU Structural Funds to contribute to the achievement of Article 19 of the United Nations Convention on the Rights of Persons with Disabilities, p.14 (Office of the United Nations High Commissioner for Human Rights, Regional Office for Europe, April 2012)

[42] UN Committee on the Rights of Persons with Disabilities, Concluding observations on Hungary, paragraph 42 (CRPD/C/HUN/CO/1); Horvath and Kiss v Hungary, European Court of Human Rights, Application No. 11146/11, 2013; Orsus and Others v Croatia, European Court of Human Rights, Application No. 15766/03, 2010

[43] Assessing the impact of European governments’ austerity plans on the rights of persons with disabilities (European Foundation Centre, 2012)

[44] UN Committee on the Rights of Persons with Disabilities, Concluding observations on Austria, paragraph 37 (CRPD/C/AUT/CO/1)

[45] UN Committee on the Rights of Persons with Disabilities, draft General Comment on Article 12 – Equal Recognition before the Law

[46] Getting a life: living independently and being included in the community, a legal study of the current use and future potential of the EU Structural Funds to contribute to the achievement of Article 19 of the United Nations Convention on the Rights of Persons with Disabilities, p. 26 (Office of the United Nations High Commissioner for Human Rights, Regional Office for Europe, April 2012)

[47] Article 14 UNCRPD - Liberty and security of person

1. States Parties shall ensure that persons with disabilities, on an equal basis with others:

(a) enjoy the right to liberty and security of person;

(b) are not deprived of their liberty unlawfully or arbitrarily, and that any deprivation of liberty is in conformity with the law, and that the existence of a disability shall in no case justify a deprivation of liberty.

2. States Parties shall ensure that if persons with disabilities are deprived of their liberty through any process, they are, on an equal basis with others, entitled to guarantees in accordance with international human rights law and shall be treated in compliance with the objectives and principles of the present Convention, including by provision of reasonable accommodation.

[48] Article 15 UNCRPD - Freedom from torture or cruel, inhuman or degrading treatment or punishment

[49] 2nd Manifesto on the rights of women and girls with disabilities in the European Union, a toolkit for activists and policy makers, p.63-64 (EDF, EWL and CERMI, May 2011)

[50] Statistical annex to the Italian official report on the implementation of the UNCRPD (National Observatory on the Conditions of Persons with Disabilities, 2012); Children and young people with disabilities, pp. 6 and 11 (UNICEF factsheet, May 2013)

[51] UN Committee on the Rights of Persons with Disabilities, Concluding observations on Paraguay, paragraph 50 (CRPD/C/PRY/CO/1)

[52] UNCRPD Committee, Concluding observations on China (CRPD/C/CHN/CO/1)

[53] Getting a life: living independently and being included in the community, a legal study of the current use and future potential of the EU Structural Funds to contribute to the achievement of Article 19 of the United Nations Convention on the Rights of Persons with Disabilities, p. 27 (Office of the United Nations High Commissioner for Human Rights, Regional Office for Europe, April 2012)

[54] Article 9 UNCRPD - Accessibility

1. To enable persons with disabilities to live independently and participate fully in all aspects of life, States Parties shall take appropriate measures to ensure to persons with disabilities access, on an equal basis with others, to the physical environment, to transportation, to information and communications, including information and communications technologies and systems, and to other facilities and services open or provided to the public, both in urban and in rural areas. These measures, which shall include the identification and elimination of obstacles and barriers to accessibility, shall apply to, inter alia:

(a) buildings, roads, transportation and other indoor and outdoor facilities, including schools, housing, medical facilities and workplaces;

(b) information, communications and other services, including electronic services and emergency services.

2. States Parties shall also take appropriate measures:

(a) to develop, promulgate and monitor the implementation of minimum standards and guidelines for the accessibility of facilities and services open or provided to the public;

(b) to ensure that private entities that offer facilities and services which are open or provided to the public take into account all aspects of accessibility for persons with disabilities;

(d) to provide in buildings and other facilities open to the public signage in Braille and in easy to read and understand forms;

(e) to provide forms of live assistance and intermediaries, including guides, readers and professional sign language interpreters, to facilitate accessibility to buildings and other facilities open to the public;

(f) to promote other appropriate forms of assistance and support to persons with disabilities to ensure their access to information;

(g) to promote access for persons with disabilities to new information and communications technologies and systems, including the Internet;

(h) to promote the design, development, production and distribution of accessible information and communications technologies and systems at an early stage, so that these technologies and systems become accessible at minimum cost.

[55] European Union Statistics on Income and Living Conditions (EU-SILC) 2011, available at

http://epp.eurostat.ec.europa.eu/portal/page/portal/microdata/eu_silc

[56] Council of Europe Disability Action Plan (DAP) 2006-2015, Recommendation Rec(2006)5,. Revised Draft Mid-term Review Report, 2010

[57] Academic Network of European Disability Experts (ANED) - VT/2007/005: Inclusive education for young disabled people in Europe: trends, issues and challenges. A synthesis of evidence from ANED country reports and additional sources. Serge Ebersold (National Higher Institute for Training and Research on Special Needs Education, INSHEA) with Marie José Schmitt and Mark Priestley, April 2011

[58]The Salamanca statement and framework for action on special needs education, adopted at the World Conference on special needs education: access and quality, Salamanca, Spain,7- 10June 1994

http://unesdoc.unesco.org/images/0009/000984/098427eo.pdf

[59] Employment of disabled people in Europe 2002: Statistics in Focus Theme 3 – 26/2003 Population and living conditions, Eurostat http://ec.europa.eu/employment_social/health_safety/docs/disabled_%202002_en.pdf

[60] Organisation for Economic Co-operation and Development (OECD): Sickness, disability and work: Breaking the barriers: A synthesis of findings across OECD countries (Paris, OECD Publishing, 2010).

[61] WHO/World Bank 2011 World Report on Disability, Geneva

[62] ILO 2013 Global Employment Trends for Youth 2013: A generation at risk, Geneva

[63] Buckup S., The price of exclusion: The economic consequences of excluding people with disabilities from the world of work, Employment Sector Working Paper No. 43 (Geneva, ILO, 2009).

[64] OECD 2010, op. cit.

[65] Article 27 UNCRPD - Work and employment

1. States Parties recognise the right of persons with disabilities to work, on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities. States Parties shall safeguard and promote the realisation of the right to work, including for those who acquire a disability during the course of employment, by taking appropriate steps, including through legislation, to, inter alia:

(a) prohibit discrimination on the basis of disability with regard to all matters concerning all forms of employment, including conditions of recruitment, hiring and employment, continuance of employment, career advancement and safe and healthy working conditions;

(b) protect the rights of persons with disabilities, on an equal basis with others, to just and favourable conditions of work, including equal opportunities and equal remuneration for work of equal value, safe and healthy working conditions, including protection from harassment, and the redress of grievances;

(c) ensure that persons with disabilities are able to exercise their labour and trade union rights on an equal basis with others;

(d) enable persons with disabilities to have effective access to general technical and vocational guidance programmes, placement services and vocational and continuing training;

(e) promote employment opportunities and career advancement for persons with disabilities in the labour market, as well as assistance in finding, obtaining, maintaining and returning to employment;

(f) promote opportunities for self-employment, entrepreneurship, the development of co-operatives and starting one’s own business;

(g) employ persons with disabilities in the public sector;

(h) promote the employment of persons with disabilities in the private sector through appropriate policies and measures, which may include affirmative action programmes, incentives and other measures;

(i) ensure that reasonable accommodation is provided to persons with disabilities in the workplace;

(j) promote the acquisition by persons with disabilities of work experience in the open labour market;

(k) promote vocational and professional rehabilitation, job retention and return-to-work programmes for persons with disabilities.

2. States Parties shall ensure that persons with disabilities are not held in slavery or in servitude, and are protected, on an equal basis with others, from forced or compulsory labour.

[66] “Sheltered workshops” is an alternative term used in European regulations in the field of public procurement and state aid. EDF prefers to call them “sheltered employment companies” since this reflects more accurately the reality of these undertakings.

[67] Disability Rights Commission in the United Kingdom: report on premature deaths among people with learning disabilities or mental health problems and local reports of unequal access to healthcare between 2004 and 2006.

[68] Article 25 UNCRPD - Health

States Parties recognise that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall:

(a) provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes;

(b) provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimise and prevent further disabilities, including among children and older persons;

(d) require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care;

(e) prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, which shall be provided in a fair and reasonable manner;

(f) prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.

[69] World Health Organisation: World report on disability, 2011

[70] Ibid, p. 25.

[71] Ibid., p. 37.

[72] European Union Fundamental Rights Agency, Inequalities and multiple discrimination in access to and quality of healthcare, 2013, p. 51, available at http://fra.europa.eu/en/publication/2013/inequalities-discrimination-healthcare

[73] Source: Danish Council on Disability

[74] Ibid., p. 55.

[75] World Health Organisation: World report on disability, 2011

[76] Disability Rights Commission, London: Equality treatment: closing the gap: a formal investigation into the physical health inequalities experiences by people with learning disabilities and/or mental health problems. (2006.)

[77] Article 26 UNCRPD - 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 organise, 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:

(a) begin at the earliest possible stage, and are based on the multidisciplinary assessment of individual needs and strengths;

(b) support participation and inclusion in the community and all aspects of society, are voluntary, and are available to persons with disabilities as close as possible to their own communities, including in rural areas.

2. States Parties shall promote the development of initial and continuing training for professionals and staff working in habilitation and rehabilitation services.

3. States Parties shall promote the availability, knowledge and use of assistive devices and technologies, designed for persons with disabilities, as they relate to habilitation and rehabilitation.

[78] Swedish disability policy: services and care for people with functional impairments: habilitation, rehabilitation, and technical aids [Article No. 2006–114–24]. Stockholm, Socialstyrelsen, The National Board of Health and Welfare, 2006.

http://www.socialstyrelsen.se/Lists/Artikelkatalog/Attachments/9548/2006-114-24_200611424.pdf

[79] Kephart G, Asada Y. Need-based resource allocation: different need indicators, different results? BMC Health Services Research, 2009,9:122.

[80] Global survey of government actions on the implementation of the standard rules of the equalisation of opportunities for persons with disabilities. Amman, Office of the UN Special Rapporteur on Disabilities, 2006:141.

[81] Eldar R et al. Rehabilitation medicine in countries of central/eastern Europe. Disability and Rehabilitation, 2008,30:134-141.

[82] Middleton,J. W. et al.: Issues and challenges for the development of a sustainable service model for people with spinal cord injury living in rural regions. Archives of Physical Medicine and Rehabilitation, 2008,89:1941-1947.

[83] Modernising sickness and disability policy: OECD thematic review on sickness, disability and work issues paper and progress report, Paris, Organisation for Economic Co-operation and Development, 2008.

[84] Global survey of government actions on the implementation of the standard rules of the equalisation of opportunities for persons with disabilities., op. cit.

[85] World Health Organisation: World report on disability, 2011.

[86] Overview of Early Intervention. Washington, National Dissemination Center for Children with Disabilities, 2009 (http://www.nichcy.org/babies/overview/Pages/default.aspx ).

[87] World Health Organisation, op. cit.

[88] Turner-Stokes L. Politics, policy and payment – facilitators or barriers to person-centred rehabilitation? Disability and Rehabilitation, 2007,29:1575-1582.

[89] Article 28 UNCRPD - Adequate standard of living and social protection

1. States Parties recognise the right of persons with disabilities to an adequate standard of living for themselves and their families, including adequate food, clothing and housing, and to the continuous improvement of living conditions, and shall take appropriate steps to safeguard and promote the realisation of this right without discrimination on the basis of disability.

2. States Parties recognise the right of persons with disabilities to social protection and to the enjoyment of that right without discrimination on the basis of disability, and shall take appropriate steps to safeguard and promote the realisation of this right, including measures:

a) to ensure equal access by persons with disabilities to clean water services, and to ensure access to appropriate and affordable services, devices and other assistance for disability-related needs;

b) to ensure access by persons with disabilities, in particular women and girls with disabilities and older persons with disabilities, to social protection programmes and poverty reduction programmes;

c) to ensure access by persons with disabilities and their families living in situations of poverty to assistance from the state with disability-related expenses, including adequate training, counselling, financial assistance and respite care;

d) to ensure access by persons with disabilities to public housing programmes;

e) to ensure equal access by persons with disabilities to retirement benefits and programmes.

[90] Project “Disability and social exclusion in the EU”. This took place in 7 countries: Austria, Greece, Italy, Finland, France, Spain and Sweden. Some of the main findings of this research show the need to ensure a consistent framework of minimum income.

[91] Disability Poverty in the UK, Leonard Cheshire Disability, January 2008

[92] European Commission, DG Employment, Social Affairs and Equal Opportunities (2007): Men and Women with Disabilities in the EU: Statistical Analysis of the LFS Ad Hoc Module and the EU-SILC. Final Report.

[93] Assessing the impact of European governments’ austerity plans on the rights of people with disabilities – European report, Hauben, H. et al. (2012), European Foundation Centre, available at

http://www.efc.be/programmes_services/resources/Documents/Austerity2012.PDF

[94] EU-SILC 2011, available at http://epp.eurostat.ec.europa.eu/portal/page/portal/microdata/eu_silc

[95] Ibid.

[96] European comparative data on Europe 2020 and People with disabilities, final report prepared by Stefanos Grammenos from the Centre for European Social and Economic Policy (CESEP ASBL) on behalf of the Academic Network of European Disability Experts (ANED), December 2013, available at http://www.disability-europe.net

[97] “Disability and the cost of living”, National Disability Authority, Ireland