Civil Society Response to COSP Background paper “Promoting the humanrights of persons with psychosocial and intellectual disabilities”

Promoting the human rights of persons with psychosocial and intellectual disabilities

 

Note by Civil Society Co-ordination Mechanism

 

The present document was prepared by a small working group for the Civil Society Co-ordination Mechanism, on the basis of available information, towards the round-table discussion on the background paper, “Promoting the rights of persons with mental and intellectual disabilities”, to be held at the ninth session of the Conference of States Parties to the Convention on the Rights of Persons with Disabilities, New York.

The members of the Civil Society Co-ordination Mechanism are extremely concerned that the background paper is developed completely within the bio-medical paradigm, and not the social paradigm as framed by the CRPD. The paper, while promoting the global mental health agenda of ‘filling the treatment gap’, remains silent on the topics of forced institutionalization, coercive psychiatry, and the vexatious continued use of inhuman, degrading, cruel treatments amounting to torture, within the mental health systems worldwide. In referring to outmoded documents such as the 1991 MI Principles, and promoting mental health legislations, this document is far from compliant with the UNCRPD, [vide the emerging General comments, Concluding Observations, observations by visiting SRs, thematic studies, research papers and various other developments within the UN system].  Finally, the paper makes no reference to the many good practice examples of community support systems that exist for persons with intellectual and psychosocial disabilities, facilitating their inclusion and full and effective participation in community life.

 

________________________________________________

 

Conference of States Parties to the Convention on

the Rights of Persons with Disabilities

Ninth session

New York, 14-16 June 2016

Item 5 (c) of the provisional agenda*

Matters related to the implementation of the

Convention: round table 2

 

       * CRPD/CSP/2016/1.

 

 

Promoting the rights of persons with mental and intellectual disabilities

Note by the Secretariat

 

The present document was prepared by the Secretariat on the basis of available information to facilitate the round-table discussion on the theme “Promoting the rights of persons with mental and intellectual disabilities”, to be held at the ninth session of the Conference of States Parties to the Convention on the Rights of Persons with Disabilities.

 

Introduction

 

  1. Persons with psycho-social and intellectual disabilities are among the most vulnerable, marginalized and excluded groups in society. They often face various forms of social and cultural stigma and discrimination, as well as barriers to exercising their civil, political, economic, social and cultural rights. The barriers are heightened because of the fast pace of urbanization, depletion of natural resources and the increasing human insecurity, poverty, natural calamities, migration, hunger, malnutrition, violence and conflict, etc. Barriers are posed by discriminatory legislation and practices authorizing deprivation of legal capacity and liberty, and various acts of violence, abuse, cruel, inhuman, degrading treatment and torture on the basis of disability, contra, General Comment No. 1[1] and the Guidelines on Article 14 [2].
  2. The discrimination against persons with psychosocial and intellectual disabilities is widely embedded in legislation, policy, case law and social and customary practices, throughout the world, resulting in systematic violations of human rights and exclusion. Additionally, it prevents access to justice and citizenship rights, locking people out of Development. We recognize that the UNCRPD is the highest applicable standard on the rights of persons with disabilities, to protect and fulfil the human rights of persons with psychosocial and intellectual disabilities. The UNCRPD overrides all other discriminatory instruments such as Principles for the Protection of Persons with Mental Illness and for the Improvement of Mental Health Care (1991, WHO). All existing mental health standards, policies, definitions and data need to be reviewed by Member states, to ensure the enjoyment of human rights and fundamental freedoms of persons with psychosocial and intellectual disabilities on an equal basis with others in line with the UN CRPD.
  3. We recognize that the Right to good quality, accessible and affordable health care and wellbeing services is indivisibly linked to all other human rights and full and effective participation within Development processes, as defined by the SDGs. The SDGs provide a global, universal Development practice for all peoples of the world and a strong commitment made to communities and ecologies by all countries of the world. Poverty and hunger mitigation, ensuring clean water and sanitation, cultivating good health and well being, fostering peace, addressing gender and other inequalities, work, ensuring sustainable cities and communities, climate action, ensuring justice, and building strong institutions will result in better health and wellbeing for persons with disabilities and provide a social environment for highest attainment of all human rights for all[3].
  4. While persons with psychosocial disability and intellectual disability face similar barriers to the realization of their rights and full and effective participation in Development, it is important to acknowledge that psychosocial disability and intellectual disability are distinct from each other.
  5. The present paper addresses the rights of persons with psychosocial, and intellectual disabilities offers guidance to the social and human rights based model of psychosocial and intellectual disabilities, so that the highest attainable standard of health and wellbeing are enjoyed by them, on equal basis with others. Wellbeing is not just the absence of disease. It is the enjoyment of personal freedoms and choices, meaningful occupation, opportunities for learning and growth, having fun and leisure, spiritual and cultural pursuits, being within chosen support systems, being with family, friendships, having peer support systems and circles of care, and having access to good nutrition and being able to access fitness services, on equal basis with others.
  6. While persons with psychosocial and intellectual disabilities may fully enjoy good health and wellbeing on equal basis with others, nowhere in the world should it be allowed that, they are only seen as subjects of medical or / and psychiatric treatment. In this context, recognizing the Concluding Observations of the CRPD Committee in a variety of countries, and consistent observations by SRs, we recognize certain practices in medical treatment of disabilities as cruel, inhuman, degrading treatment, such as forced institutionalization, forced medication, solitary confinement and forced treatment[4], which continue to exist in many parts of the world. We recognize the problem of secondary disability caused by institutionalization, ECT and use of psychiatric drugs, which are closely associated with the high mortality rate of this population; and the significant harm to social and personal wellbeing caused by the trauma of forced psychiatric interventions.
  7. We recognize that the overall general health of populations can be compromised due to a variety of social, structural, economic, geographic, occupational, environmental, climactic and other factors, and confounded greatly due to poverty, gender, ethnicity, age and disability. In low income economies women who face severe occupational hazards, intensive physical labour, domesticity and manual work may be viewed by health providers as imagining their physical symptoms and referred to invasive medical treatment or psychiatry, instead of attempts to provide social protection and / or raise their standard of living to an adequate level (Article 28 of the CRPD). Women and adolescent girls are also referred for forced psychiatric treatment and institutionalization when faced with acute domestic and sexual violence within the household and in society.
  8. Upto 36% of people living in low income countries continue to experience coercive mental health legislations, and countries which do not have them, are making new mental health legislations, based on existing formats. OECD countries are all governed by coercive mental health laws and treatment practices. In most countries of the world, old colonial views of ‘unsound mind’ and ‘lunatic’ continue to be found within law. Further, a finding of ‘incapacity’ may result in forced and life-long institutionalization, creating a legal nexus for deprivation of human rights. As a result of the discriminatory legislation and colonial practices of segregation, citizens with psychosocial disabilities face intensive attitudinal and other barriers and threat to inclusion in community life. The necessary financial and human resources must not be used for perpetrating human rights violations, but be made available for realizing CRPD-compliant support for persons with psychosocial disabilities, including access to mainstream community based supports services and alternatives to the medical model, in compliance with the Article 19 of the UNCRPD , to ensure their being able to live independently and being fully included in communities.
  9. Consequently, states parties shall make all efforts to raise awareness, complying with Article 8 of the UNCRPD, to change the negative and discriminatory stereotypes of persons with disabilities and project them as primary holders of all human rights who can contribute to society in a positive way.
  10. The economy of institutionalization and de-institutionalization must be studied by pilots as described in the World Disability Report[5], Health care Budgets must be analyzed against outcome on the inclusion of persons with intellectual and psychosocial disabilities, their general quality of life, standard of living, and wellbeing. We recognize that in this sector, ‘more money’ does not mean ‘better services’; and that community based psychosocial and wellbeing services for all persons of communities, including persons with disabilities, may be cost effective and inclusive. Towards this end, we propose Member states to pursue economic studies to create good quality evidence base relating to service delivery.

 

International normative framework

 

  1. The Convention on the Rights of Persons with Disabilities includes those with psychosocial and intellectual impairments and addresses the barriers that may hinder their full and effective participation in society on an equal basis with others.[6] This includes persons with psychosocial disabilities, persons with dementia, and autistic persons, as well as well as persons with intellectual disabilities. Persons with psychosocial, and intellectual disabilities are guaranteed equal rights, treatment and opportunity by all provisions of the Convention and other relevant international norms and standards relating to disability.
  2. All Conventions and treatises are relevant to persons with psychosocial and intellectual disabilities, including the CEDAW, ICESCR, CERD, CRC, ICCPR. Jurisprudence is evolving in a number of older instruments with respect to persons with disabilities; UNCRPD jurisprudence is providing guidance, and explication through COs and GCs. Vide this recent knowledge, we recognize that abolishing mental institutions would be a way to end the ill-treatment, violence and torture against persons with intellectual and psychosocial disabilities, who are health care subjects on equal basis with others [7].
  3. Increasing international attention to disability is also reflected in the resolutions adopted by the General Assembly, the Security Council and the Economic and Social Council that mention disability.[8]
  4. The General Assembly also declared March 21 as World Down Syndrome Day,[9] April 2 as World Autism Awareness Day,[10]and December 3 as the International Day of Persons with Disabilities.[11]

Lessons learned and persistent challenges in the inclusion of persons with mental and intellectual disabilities in society and development development.

  1. In the present scenario of UNCRPD and SDGs, we recognize that inclusion of persons with psychosocial and intellectual disabilities in society and development, goes beyond just giving medical treatment and improvement of medical psychiatric personnel and facilities; and that inclusion will happen when all human rights are fulfilled, all stakeholders are involved, where there is a justice environment for all on equal basis, and persons with psychosocial and intellectual disabilities fully participate in all policies and processes that impact them.
  2. Poverty and hunger mitigation, ensuring clean water and sanitation, addressing gender and other inequalities, work, ensuring sustainable cities and communities, climate action, ensuring justice, cultivating community wellbeing, fostering peace, and building strong institutions will result in better inclusion for persons with intellectual and psychosocial disabilities [12].
  1. Access to appropriate voluntary care and support based in the community is extremely limited for many persons with psychosocial, and intellectual disabilities. In most countries, people are still deprived of their liberty and segregated in institutions as a method of medical treatment, despite the fact that voluntary community-based psychosocial and wellbeing services, with an emphasis on fitness, lifestyles, social engagements, family empowerment and various holistic alternatives to the medical model,[13] have been shown to be effective, less costly, reduce the socially disabling features of disability and are better at lessening social exclusion. Such support services must be accessible, address diversity of needs, and be located near the homes and communities where people live, in compliance with the Article 19 of the CRPD.
  2. Human resources for community based psychosocial and inclusion services to support people with psychosocial, and intellectual disabilities are severely lacking in all countries, particularly in OECD countries, where, due to insurance, health policy and legal systems, there is overdependence on medical and institution based care and communities have to be rebuilt. In low income economies, usually, social capital and natural care giving is high, traditional systems of social exchange and community life is still present, and can be resourced in realizing the right to living independently and being included in communities. Mutual exchange between all stakeholders in this diversified global scenario may bring clarity on modalities of building communities around wellbeing, involving different kinds of family and community arrangements, while respecting local experiences of family, culture and community.
  3. Persons with psychosocial and intellectual disabilities disproportionately face barriers to accessing and maintaining life long education. This is due in large part to a lack of understanding of the disability among families of children with psychosocial and intellectual disabilities, teachers and the local communities at large. In many countries, some children and adolescents with psychosocial and intellectual disabilities are institutionalized in facilities that do not offer education or are otherwise unable to access education. Children with psychosocial, and intellectual disabilities who do attend school often face stigma and discrimination by their peers and, sometimes, by their teachers, or leading to dropping out, as well as worsened well-being and quality of life. Inclusion in education establishes lifelong patterns of inclusion. Lack of training and awareness among teachers regarding provisions for inclusive and accessible education for persons with psychosocial, and intellectual disabilities results in inaccessible education facilities and education policies and practices that are discriminatory against children with psychosocial, and intellectual disabilities in many countries.
  4. People with psychosocial and intellectual disabilities experience high rates of unemployment. In some low- and middle-income countries, 90 per cent of persons with psychosocial disabilities are unemployed. Persons with psychosocial, and intellectual disabilities can work if universal design, support systems and reasonable accommodations are available, yet a lack of knowledge on the lived experience of people with psychosocial, and intellectual disabilities and stereotyping and discrimination have led to challenging situations.
  5. Implementation of article 12 of the Convention, relating to equal recognition before the law, has been particularly challenging owing to the general perception that persons with psychosocial and intellectual disabilities have difficulties in decision-making on their own, and due to harmful stereotyping of such persons as dangerous and untrustworthy, leading to anticipatory coercive measures that violate the rights to liberty and security of the person and freedom from torture and ill-treatment, as well as the right to legal capacity. Further efforts are needed to dismantle legal regimes that accord inferior and restricted legal capacity to persons with psychosocial, and intellectual disabilities, and to develop supported decision-making mechanisms that can meet the wide range of diverse needs experienced by persons with psychosocial, and intellectual disabilities in this regard.
  6. In situations of disasters or humanitarian crises, persons with psychosocial, and intellectual disabilities often suffer from the inaccessibility of emergency management and services and are left behind. Persons with psychosocial, and intellectual disabilities often experience high levels of distress due to the stress of emergencies, in addition to inability to access their accustomed support providers. Emergency health and social support services tend to lack services related to psychosocial well-being, and persons with psychosocial, and intellectual disabilities face difficulties in accessing immediate and emergency attention and, health care, social support, information, or even practical support and accessibility measures to enable them to meet basic needs. Overall, during and after disasters and crisis situations, people experience mental and emotional distress, affecting quality of life, resilience and the ability to prepare, recover and reconstruct. These conditions can have long-term consequences physically, psychologically, socially and economically and require both short- and long-term commitments of resources and solidarity as part of recovery and reconstruction as a whole, in ways that are healing and reparative for the individuals and communities concerned.  This means, inter alia, ensuring that support measures are offered a wide range of services and supports and are not automatically channelled into medical model mental health systems or subjected to non-consensual mental health interventions or non-consensual hospitalization. In such situations, persons with psychosocial, and intellectual disabilities are more susceptible to physical and sexual violence.
  7. Over the last 20 years we have witnessed the emergence of a vibrant self-advocacy voice around the world. Yet, this development has been uneven. Much work remains to be done to build self-advocacy in places where the is no tradition of self-advocacy and where persons with intellectual disabilities remain isolated and marginalized. Self-advocacy is about having control in your life and being heard. We know that self-advocacy begins at birth and it begins at home. Families need support to understand self-advocacy and how to nurture and develop it. Self-advocacy is essential for securing the full rights and inclusion of persons with intellectual disabilities.
  8. In low and middle income countries, persons with psychosocial and intellectual disabilities are coming together, forming civil society movements, and engaging in dialogue with policy makers. However, their experiences are not recognized in forming national policies due to attitudinal and other cultural barriers. Full and effective participation of persons with disabilities is the key to the success of efforts on fostering wellbeing and inclusion.

                      The way forward

25. Urgent efforts should be made to advance the rights and inclusion of persons with psychosocial, and intellectual disabilities by taking immediate steps to end harmful practices in violation of their human rights under the CRPD, increasing the accessibility of services fulfilling CRPD human rights standards, and promoting greater understanding of their lived experiences and perspectives.

26. Harmful practices in violation of human rights under the CRPD, including guardianship, substituted decision-making, restriction of legal capacity, compulsory or non-consensual treatment, compulsory or non-consensual hospitalization or institutionalization, and use of restraint or seclusion in mental health or social care facilities, can be meaningfully addressed in the following ways:

a. Reform of all laws and policies in order to prohibit guardianship, substituted decision-making, restriction of legal capacity, compulsory or non-consensual treatment, compulsory or non-consensual hospitalization or institutionalization, and use of restraint or seclusion in mental health or social care facilities, and until States repeal such laws and policies, a moratorium on any new instances of mental health legislations, forced treatment, hospitalization, or institutionalization, or guardianship or substitute decision-making regimes.

b.Immediate legislative, administrative, or judicial measures to ensure that all persons currently under forced treatment, hospitalization, or institutionalization, or guardianship or substitute decision-making regimes, are provided with the right and opportunity to end the regime or convert it to a support regime that respects the individual’s autonomy, will and preferences.

c.Reparative measures for individuals subjected to such regimes, including information, opportunity, and support to withdraw from psychiatric institutions, treatments or medications or reduce their use, in accordance with the individual’s will and preferences; compensatory preference (affirmative action) schemes for education and employment, including reasonable accommodation measures; social healing including apologies and other symbolic recognition, designed with the full and active leadership of people with psychosocial, and intellectual disabilities who have been so harmed; other measures to be designed according to local needs and preferences of those who have been harmed.

27.Services to meet the support needs of persons with psychosocial, and intellectual disabilities can be improved through:

(a)    Development of comprehensive community-based psychosocial and inclusion services with an emphasis on alternatives to the medical model of mental health, and strengthening the knowledge and skills of service providers in human rights-based support that fulfils the requirements of CRPD and respects individual autonomy, integrity, privacy, dignity, and choices

(b)    Developing and updating policies, and updating or repealing laws relating to mental health within all relevant sectors in line with the Convention on the Rights of Persons with Disabilities, in particular by enacting and enforcing clear prohibition of any treatment, hospitalization, intervention, or support without the express free and informed consent of the person concerned, including a full stop of court-ordered guardianship, treatment or placement regimes, including those based on notions of “protection” and “dangerousness caused by psychosocial disabilities”, and by promoting the social and human rights based model of support, and strengthening coordination among key stakeholders at the international, national and community levels, including as primary stakeholders with a leadership role the representative organizations of persons with psychosocial disabilities at every level;

(c)    Increasing skilled human resources for services to meet the support needs of persons with psychosocial, and intellectual disabilities, subject to their being trained in alternatives to the medical model of health and respect for human rights under the CRPD, such as community health workers and specialized mental health professionals, peer support providers with an equal pay scale as other professionals with comparable qualifications, as well as social workers and human rights advocates;

(d)    Utilizing electronic and mobile technologies and outreach subject to respect for the autonomy, will and preferences of the person concerned;

(e)    Accelerating deinstitutionalization and promoting the availability of a wide range of supports and services to meet needs related to the rightto live independently in the community,, based on the prohibition of coercive practices and the obligation to support the choices, autonomy, will and preferences of the person concerned.

28.It is also important to develop support systems for persons with disabilities using support services, so as to maximize their exercise of choice and control with respect to such services, and for families and support providers of persons with disabilities, provided that such systems should be geared to meeting family members’ and support providers’ own support needs and not violating the privacy of those they support or infringing their rights.

29.Education is important to raise awareness about the human rights of persons with psychosocial, and intellectual disabilities as full and equal members of society and of every community. It should be noted that efforts are under way to develop inclusive education systems that are designed to meet the needs of children with psychosocial, and intellectual disabilities on an equal basis with others. In addition, effective individualized support measures need to be provided in environments that maximize life long learning and social development.

30.Particular attention should be paid to strengthening education and training for employers, schoolteachers, human resources staff and supervisors on the rights of persons with psychosocial, and intellectual disabilities and the obligations of accessibility and non-discrimination including reasonable accommodation, to enable accessible and inclusive employment.

31.In the area of promoting preparedness, resilience and effective response for disasters and humanitarian crises, it is critical to include the perspectives and express needs of persons with psychosocial, and intellectual disabilities in all stages of planning and response.

32.We recognize that peaceful and just communities cannot be wrought by medical interventions; and that a wide range of peace building strategies and services towards conflict amelioration and reconciliation, building bridges of trust and nonviolent communication, forgiveness and emotional detachment, restoration of justice and trauma informed counselling services must be made widely available within communities.

33.Promotion of public awareness is imperative in tackling the stereotypes and discrimination faced by persons with psychosocial, and intellectual disabilities. Specific information and communications technologies and other innovations may be adopted to promote accessibility for persons with psychosocial, and intellectual disabilities, as well as sensitivity to the lived experiences and perspectives of persons with psychosocial, and intellectual disabilities as reflecting a full spectrum of human diversity and humanity.. Cultural and artistic means and innovations by persons with psychosocial, and intellectual disabilities can be used to promote awareness and understanding of the capabilities, strengths and achievements such individuals contribute to communities, and combat stereotypes and discrimination against them.

34.In all of these steps, it is essential to closely and actively involve persons with psychosocial and intellectual disabilities as leaders and primary stakeholders in consultations, decision-making, implementation, monitoring and evaluation, as well as follow-up actions. In particular, there is an urgent need to include the voices of organizations of persons with psychosocial, and intellectual disabilities in low-income countries, and to promote the independent development of such organizations where they do not exist.

35.In order to achieve inclusion at that level, the rights and perspectives of persons with psychosocial, and intellectual disabilities, the normative content and state obligations of the CRPD and the General Comments and Guidelines of the Committee on the Rights of Persons with Disabilities, need to be integrated in key considerations and planning for all United Nations work, including those related to peace and security, sustainable development, disaster risk reduction and humanitarian action, and human rights.

36.Technical tools and guidance notes on policies and programmes on the rights of persons with psychosocial, and intellectual disabilities, based on the normative content and state obligations of the CRPD and the General Comments and Guidelines of the Committee on the Rights of Persons with Disabilities, for coordination to develop global, regional and national networks for inclusive development designed to meet the needs of persons with psychosocial, and intellectual disabilities on an equal basis with others, with due regard for the leadership of persons with psychosocial, and intellectual disabilities, will be useful. In this regard, the implementation of the 2030 Agenda should take into consideration the expressed needs and perspectives of those with psychosocial, and intellectual disabilities and their full and equal human rights as guaranteed by the CRPD and interpreted by the Committee on the Rights of Persons with Disabilities.

Questions for consideration

  1. What are the main challenges and gaps in the inclusion of persons with psychosocial, and intellectual disabilities as part of efforts to achieve sustainable development?
  2. What are good practices and lessons learned at the local, national, regional and international levels in integrating the human rights, expressed needs, and perspectives of persons with psychosocial, and intellectual disabilities as a development issue?
  3. What kinds of measures and innovation have been successful or useful in improving accessibility for persons with psychosocial,  and intellectual disabilities?
  4. What concrete measures and actions should be taken by Member States, the United Nations system, civil society and academic institutions to implement the relevant Sustainable Development Goals for the full realization of all civil, political, economic, social, and cultural rights by all persons with psychosocial, and intellectual disabilities?
  5. What indicators should be considered to ensure that the human rights of persons with psychosocial, and intellectual disabilities, as guaranteed under the CRPD and explained by General Comments and Guidelines of the Committee on the Rights of Persons with Disabilities, are given due consideration in the follow-up and review of the implementation of the 2030 Agenda?

 

[1]CRPD/C/GC/1

[2]Committee on the Rights of Persons with Disabilities, “Guidelines on Article 14 of the CRPD, Right to LIberty and Security of persons with disabilities”, Adopted during the Committee’s 14th Session Held in September 2015.

[3]https://sustainabledevelopment.un.org/?menu=1300

[4]GC1, Paragraph 42

[5][5] World disability Report (WHO and World Bank, 2011).

          [6] Article 1 of the Convention.

[7] International Disability Alliance (2012). The Role of the inspectorates in promoting the right to live in the community. IDA: Geneva.

          [8] Numerous references were made to disability and mental well-being in resolutions adopted by the General Assembly, the Security Council and the Economic and Social council during the period 2000-2014. See AtsuroTsutsumi, Takashi Izutsu and Akiko Ito, Mental Health, Well-Being and Disability: A New Global Priority — Key United Nations Resolutions and Documents (University of Tokyo, 2015).

          [9] See General Assembly resolution 66/149.

         [10] See General Assembly resolution 62/139.

         [11] See General Assembly resolution 47/3.

[12] https://sustainabledevelopment.un.org/?menu=1300

[13]See Guidelines on Article 14, paragraph 24.

[14]Inclusion International (2014). Independent, but not alone. A global report on the right to decide. http://inclusion-international.org/wp-content/uploads/2014/06/Independent-But-Not-Alone.pdf

One thought on “Civil Society Response to COSP Background paper “Promoting the humanrights of persons with psychosocial and intellectual disabilities”

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s