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Article
25 - Health
Background Documents | Article
25 Background
Seventh Session | Sixth Session | Fourth
Session | Third Session
Working Group | References
Seventh Session
Governments
United States of America
UN System Organizations
National Human Rights Institutions
Non-governmental organizations
Federation of and for People with Disabilities (Kenya)
International Disability Caucus
Mental Disability Rights International
Special Rapporteurs
Special Rapporteur on Right to Health
Comments, proposals and amendments submitted electronically
Governments
Article 6
Part I WOMEN
b) bis) develop and disseminate policies and programs in fields such as family-planning and parenthood, pregnancy, childbirth and the post-natal period, that are inclusive of women with disabilities and protect them against any form of coercive treatment, including sterilization. ensure them to retain their fertility on an equal basis with other women and to the extent that these are permitted by national laws of general application.
Note: The amendment is to be consistent with Article 23.
European Union
Article 25
States Parties recognise that persons with disabilities have the right to the enjoyment of the highest attainable standard of physical and mental 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, including health-related rehabilitation. In particular, States Parties shall:
(a) provide persons with disabilities with the same range and standard of affordable health services as provided other persons, [including sexual and reproductive health services] and population-based public health programmes;
EU Proposal (a): The EU supports the inclusion of the text in square brackets.
(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 amongst children and the elderly;
(c) provide these health services as close as possible to people's own communities, including in rural areas;
(d) require health professionals to provide care of the same quality to persons with disabilities as to others and on the basis of free and informed consent by, where necessary, 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 healthcare;
(e) prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where permitted by national law, which shall be provided in a fair and reasonable manner.
Amendments to art 25 Health
States Parties recognise that persons with disabilities have the right to the enjoyment of the highest attainable standard of physical and mental 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, including health-related rehabilitation. In particular, States Parties shall:
DELETE THE SQUARE BRACETS IN SUB-PARAGRAPH (A)
(a) provide persons with disabilities with the same range, and standard AND QUALITY of affordable health services as provided other persons, [including sexual and reproductive health services] 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 amongst children and the elderly;
(c) provide these health services as close as possible to people's own communities, including in rural areas;
(d) require health professionals to provide care of the same quality to persons with disabilities as to others and on the basis of free and informed consent by, where necessary, 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 healthcare;
(e) prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where permitted by national law, which shall be provided in a fair and reasonable manner.
EU Proposal (a): The EU supports the inclusion of the text in square brackets.
EU Position on “Women” and “Children” in response to the joint facilitator’s proposal, 31 January 2006
States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standards of physical and mental 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 which are gender sensitive, including health related rehabilitation. In particular States Parties shall:
b) bis) ensure that policies and programs in fields such as family-planning and parenthood, pregnancy, childbirth and the post-natal period are inclusive of persons with disabilities and protect them against forced sterilization.
Article 25
Proposals on articles relating to Women and Children with disabilities and other relevant articles
(iv) We feel that paragraph (b) bis of article 25 should use the language of CEDAW
Article 25
States Parties recognise that persons with disabilities have the right to the enjoyment of the highest attainable standard of physical and mental 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, including health-related rehabilitation. In particular, States Parties shall:
(a) provide persons with disabilities with the same range and standard of affordable health services as provided other persons, (including sexual and reproductive health services) and population-based public health programmes;
(b) provide ensure the provision of 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 amongst children and the elderly, at affordable cost or free of charge;
(c) provide these health services as close as possible to people's own communities, including in rural areas;
(d) require health professionals to provide care of the same quality to persons with disabilities as to others and on the basis of free and informed consent by, where necessary, 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 healthcare;
(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) undertake and encourage the development of sufficient numbers of health professionals versed in disability related health issues, including persons who have disabilities.
Article 25
States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of physical and mental 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, including health-related rehabilitation. In particular, States Parties shall:
(a) Provide and guarantee to persons with disabilities with the same range and standard of affordable health services as provided other persons, [including sexual and reproductive health services1 ] including and population-based public health programmes;
(b) Provide and guarantee those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and the elderly including health related rehabilitation;
(b) bis Provide and guarantee services designed to minimize and prevent further disabilities, including among children and the elderly;
(c) Provide and guarantee these health services as close as possible to people’s own communities, including in rural areas;
(d) Require health professionals to provide care of the same quality to persons with disabilities as to others and on the basis of free and informed consent by, where necessary, 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;
(d) bis Provide training to health professionals in order to raise awareness of the human rights, dignity, autonomy and needs of persons with disabilities;
(d) ter Promulgate 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 permitted by national law under the terms of national legislation, which shall be provided in a fair and reasonable manner.
Footnotes:
1 Mexico believes that health services should be seen as an integral and comprehensive concept to be provided to persons with disabilities on an equal basis with others.
Article 25
SUGGESTED MODIFICATIONS TO ARTICLE 25 (“HEALTH”)
States Parties recognise that persons with disabilities have the right to the enjoyment of the progressive realization of the highest attainable standard of physical and mental 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, including health-related rehabilitation in an accessible environment on an equal basis with others. In particular, States Parties shall:
(a) provide persons with disabilities with the same [range and] standard and quality of affordable health care services as provided other persons, [including sexual and reproductive health services], 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 amongst children and the elderly;
(c) provide these health services as close as possible to people’s own communities, including in rural areas;
(d) require health professionals to provide care of the same quality to persons with disabilities as to others and on the basis of free and informed consent and parents’ involvement in health decisions regarding their minor children by, inter alia where necessary, 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 healthcare;
(new e) require that prior, free, informed and express consent be obtained for the collection of genetic data from persons with disabilities or their legal representative, that such consent also be obtained for subsequent processing, use and storage of genetic samples, whether carried out by public or private institutions except as provided for in specific procedures for waiver of consent set forth in domestic law, regulation, or policy, or in regional conventions, consistent with the principles of this Convention;
(old e, new f) prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where permitted by national law, which shall be provided in a fair and reasonable manner;
(new g) States Parties shall encourage research and the development, dissemination and application of new knowledge and technologies that benefit persons with disabilities that are compatible with the respect for human rights and the protection of human life.
UN System Organizations
PAN AMERICAN HEALTH ORGANIZATION
Contributions for Article 256 (Health), Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities
PAHO - Area of Technology and Health Services Delivery (THS) and Area of Legal Affairs (LEG)
Article 25 - Health
States Parties recognise that persons with disabilities have the right to the enjoyment of the highest attainable standard of physical and mental health without discrimination on the basis of a disability. States Parties shall take all appropriate measures to ensure access fior persons with disabilities to health facilities, services, care, treatments and goods and health related rehabilitation services. In particular, States Parties shall:
1) Comment: the accessibility should refer to other aspects related with health services such as facilities, care, treatments and goods in order to clarify to Member States which health interventions are needed. The language is consistent with General Comment 14 of the UN Committee on Economic, Social and Cultural Rights.
(a) ensure that national policies, laws and programs provide persons with disabilities, with the same level of health facilities, services, care, treatment and goods as provided other persons, including sexual and reproductive health services and population-based public health programmes; within the same sysmte as other members of society.
2) Comment: The current language in paragraph (a) is not clear about which public health instruments are going to enshire the provisions on implementation of health facilities, services, care, treatments and goods for persons with disabilities. It is important to underline that at least the national policiesm, laws and programs should make a reference to these services, goods, etc.
(b) Initiate programmes run by multidisciplinary teams of health personnel for early detection of disabilities and early intervention, to prevent and reduce avoidable disability, and at the same time and to extend comprehensive rehabilitiation services to enhance abilities. This needs to have strong linkages with the education and employment sectors; (and) to be done with
Proposal Article 25
States Parties recognise that persons with disabilities have the right to the enjoyment of the highest attainable standard of physical and mental health without discrimination on the basis of a disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health, and health related rehabilitation services. In particular, States Parties shall:
(a) ensure that persons with disabilities, are provided with the same level of health services as provided to other persons, including sexual and reproductive health services and population-based public health programmes; within the same system as other members of society.
(b) initiate programmes run by multidisciplinary teams of health personnel for early detection of disabilities and early intervention, to prevent and reduce avoidable disability in all age groups, and at the same time extend comprehensive rehabilitation services to enhance abilities.
These programmes need to have strong linkages with the education and employment sectors and be done with full participation of persons with disabilities, their families, and the organizations of persons with disabilities
(c) provide these health services as close as possible to people's own communities, making use of local resources when possible. These services also need to have good standards of accessibility including in rural areas and have a strong and easy linkage with the referral or specialized services.
(d) require health professionals to provide the same quality of care to persons with disabilities as to others on the basis of free and informed consent.
Where necessary, State Parties shall raise 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 healthcare;
(e) ensure that all health care personnel have access to adequate methods and technologies, be adequately trained and equipped to provide good medical and health care to persons with disabilities with an aim to preserve or improve their level of functioning.
(f) provide an equal focus on all levels of care, primary, secondary and tertiary, which includes corrective or reconstructive methods, assistive devices, and other measures, to optimize abilities.
(g) ensure that health related rehabilitation services also promote equal participation, enhancement of quality of life, and reduction of physical, social and attitudinal barriers.
(h) ensure the provision at affordable price, of commonly needed assistive devices; prostheses and orthoses, and equipment such as wheelchairs, hearing aids, canes and those required by persons with intellectual/cognitive disabilities; and to support the development, production, distribution and servicing of these devices as important measures to achieve the equalization of opportunities.
(i) prohibit discrimination against persons with disabilities in all aspects of social life, including the provision of health and life insurances, where permitted by national law, and assure that these are provided in a fair and reasonable manner.
National Human Rights Institutions
NATIONAL HUMAN RIGHTS INSTITUTIONS
NHRI Intervention on Article 25 (Health).
Chair,
National Human Rights Institutions have two brief observations on the draft text.
First, National Human Rights Institutions believe that the text proposed by you would be further strengthened with the addition suggested by US in a new para (e) with respect to the conditions under which genetic information can be obtained and used. We remind delegates that this matter already arose in the Working Group. Footnote 78 of the Working Group text stated:
Some members of the Working Group suggested there should be a specific mention of the fields of (bio)medical, genetic, and scientific research, and its applications, and its use to advance the human rights of persons with disabilities.
We are naturally delighted to see the United States move these ideas forward with its draft textual proposals for a new para (e). There is ample precedent in, for example, Article 11 of the Council of Europe Biomedicine Convention. And we are of course mindful of the UNESCO Universal Declaration on the Human Genome and Human Rights – especially Articles 6 and 7. We view the US proposals in this regard as fully in keeping with the norms and principles contained in these instruments and a welcome step forward in the disability context. We therefore urge delegations to take the ideas contained in the US proposal seriously as the draft text moves forward.
Secondly, we recognize that the ideas contained in Para D and new E and G proposed by the US in Article 25 and para 3 of article 17 are interconnected and premised on the principles of equality and autonomy. Indeed, they are throughout consistent in their intent.
However, the ideas contained in Para 4 of article 17 seem to make a slight deviation and may amount to inconsistency. Our intent is not to reopen the debate on involuntary intervention but to simply to highlight a possible drafting inconsistency. In that respect – and for the sake of drafting consistency - it may be a good idea to revisit the congruence between Article 17 and Article 25.
Non-governmental organizations
FEDERATION OF AND FOR PEOPLE WITH DISABILITIES (KENYA)
January 24, 2006
Article 25 Health
We cannot have an article that does not take into account extreme poverty and economic deprivation among persons with disabilities, particularly from developing countries.
FPD suggests that paragraph (b) should be redrafted as follows:-
Provide those heath services needed by persons with disabilities specifically because of their disabilities including early identification and intervention as appropriate and services designed to minimize and prevent further disabilities including amongst children and the elderly free of charge.
It would be expecting too much to ask a person with disability living at US one dollar per day to fund an operation to correct his/her disability which may cost, for example, US dollars 1,000 to be carried out. Failure to carry out this operation may mean that the person with disability (his degree of disability may worsen) may not be able to enjoy his human rights as he/she could have enjoyed if the operation had been done.
It does not look proper for the State parties to claim to have no resources, since failure to act on early identification and to take appropriate action may result to a person with a disability requiring to be provided with more State resources for life which may not have been the case if action had been taken early.
INTERNATIONAL DISABILITY CAUCUS
Chairman’s text as amended by the IDC
Article 25
States Parties recognise that persons with disabilities have the right to the enjoyment of the highest attainable standard of (DELETE: “physical and mental”) 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, including health-related rehabilitation. In particular, States Parties shall:
(JUSTIFICATION: The IDC does not want to differentiate “physical and mental” health, so delete this distinction.)
(a) provide persons with disabilities with the same range and standard of affordable health services as provided other persons, (DELETE SQUARE BRACKETS) [including sexual and reproductive health services] and population-based public health programmes (ADD: “in an accessible environment”);
(JUSTIFICATION: the Chair has bracketed: “[including sexual and reproductive health services]”. This text is important for persons with disabilities and the brackets must be deleted. We must also make sure that health service is accessible)
(b) (REPLACE: “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 amongst children and the elderly;” BY “provide all required health services and services which are disability specific including provision of support to persons with disabilities of all ages”)
(c) provide these health services as close as possible to people's own communities, (DELETE: “including in rural areas”) (ADD: “in accordance with an individual’s informed consent”);
(JUSTIFICATION: The IDC suggests the inclusion of “…in accordance with an individual’s informed consent”.” The possibility of choice must be included both for the reason of access to professionalism or as a choice for persons with disabilities persons with disabilities themselves.)
(d) require health professionals to provide care of the same quality to persons with disabilities as to others and on the basis of free and informed consent by, (REPLACE “where necessary” BY “inter alia”), raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities (ADD: “including gender, life-cycle and age requirements”) through training and the promulgation of ethical standards for public and private healthcare;
(JUSTIFICATION: “Where necessary” would allow for interpretation on what it means with “necessary” so must be deleted. "Where necessary" suggests that not even awareness-raising or promulgation of ethics codes will be required, so there is no real obligation at all. But we have to add "inter alia" so that they cannot say that just because they did awareness-raising they complied with their obligations to ensure free and informed consent. They could do awareness-raising but if PWD have no legal right to informed consent, then there is no remedy and awareness-raising is just a “feel-good” exercise that means nothing.)
(NEW (d) bis “ensure that choices among different treatment options are available for persons with disabilities, including but not limited to paramedic, alternative health services, second opinions, counselling, therapies, peer support, including health service provided by organizations of persons with disabilities”)
(JUSTIFICATION: IDC wants to see reference to peer support and access to alternative choices)
(NEW (d) ter “informed consent of persons with disabilities, is required prior to and during course of medicinal, surgical, therapeutic, or other interventions and modalities; informed consent requires disclosure of the experimental nature of any intervention and all other available information about the nature, adverse effects and benefits of the intervention. No child shall be sterilised or undergo any forced correcting surgery or medication on the ground of disability;
(JUSTIFICATION: This text has been drafted to ensure that among other things persons with disabilities are not subject to forced sterilisation or interventions of any “mental corrections”. The current text does not adequately protect children with disabilities from decisions by parents or other adults with parental rights from giving consent to sterilisation of children. The amendment seeks to protect children with disabilities from having sterilisation imposed before they are recognised in law as having the capacity to give informed consent.)
(NEW (d) quater “ensure that persons with disabilities have access to their unedited health and medical records, and are entitled to give or withhold consent to disclosure of this information to third parties;”)
(e) prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance (DELETE: “where permitted by national law”), which shall be provided in a fair and reasonable manner.
IDC proposal for Article 25
States Parties recognise that persons with disabilities have the right to the enjoyment of the highest attainable standard of (DELETE: “physical and mental”) health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to ADD: “gender sensitive” health services, including health-related rehabilitation. In particular, States Parties shall:
(JUSTIFICATION: The IDC does not want to differentiate “physical and mental” health, so delete this distinction.)
(a) provide persons with disabilities with the same range and standard of affordable health services as provided other persons, (DELETE SQUARE BRACKETS) [including sexual and reproductive health services] and population-based public health programmes (ADD: “in an accessible environment”);
(JUSTIFICATION: the Chair has bracketed: “[including sexual and reproductive health services]”. This text is important for persons with disabilities and the brackets must be deleted. We must also make sure that health service is accessible)
(b) (REPLACE: “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 amongst
children and the elderly;”
BY “provide all required health services and services which are disability specific including provision of support to persons with disabilities of all ages”)
(c) provide these health services as close as possible to people's own communities, (DELETE: “including in rural areas”) (ADD: “in accordance with an individual’s informed consent”);
(JUSTIFICATION: The IDC suggests the inclusion of “…in accordance with an individual’s informed consent”.” The possibility of choice must be included both for the reason of access to professionalism or as a choice for persons with disabilities persons with disabilities themselves.)
NEW: (c) develop and disseminate health policies and programs in fields such as family planning and parenthood, pregnancy, childbirth and the postnatal period that are inclusive to women with disabilities. and protections aggains any forms of coercive treatement to ensure that women with disabilities are enabled to decide freely and responsible of the number and spacing of their children, without discrimination
(d) require health professionals to provide care of the same quality to persons with disabilities as to others (ADD taking into account the specific needs of women with disabilities) and on the basis of free and informed consent by, (REPLACE “where necessary” BY “inter alia”), raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities (ADD: “including gender, life-cycle and age requirements”) through training and the promulgation of ethical standards for public and private healthcare;
(JUSTIFICATION: “Where necessary” would allow for interpretation on what it means with “necessary” so must be deleted. "Where necessary" suggests that not even awareness-raising or promulgation of ethics codes will be required, so there is no real obligation at all. But we have to add "inter alia" so that they cannot say that just because they did awareness-raising they complied with their obligations to ensure free and informed consent. They could do awareness-raising but if PWD have no legal right to informed consent, then there is no remedy and awareness-raising is just a “feel-good” exercise that means nothing.)
(NEW (d) bis “ensure that choices among different treatment options are available for persons with disabilities, including but not limited to paramedic, alternative health services, second opinions, counselling, therapies, peer support, including health service provided by organizations of persons with disabilities”)
(JUSTIFICATION: IDC wants to see reference to peer support and access to alternative choices)
Informal support
(NEW (d) ter “informed consent of persons with disabilities, is required prior to and during course of medicinal, surgical, therapeutic, or other interventions and modalities; informed consent requires disclosure of the experimental nature of any intervention and all other available information about the nature, adverse effects and benefits of the intervention. No child shall be sterilised on the ground of disability;
(JUSTIFICATION: This text has been drafted to ensure that among other things persons with disabilities are not subject to forced sterilisation or interventions of any “mental corrections”. The current text does not adequately protect children with disabilities from decisions by parents or other adults with parental rights from giving consent to sterilisation of children. The amendment seeks to protect children with disabilities from having sterilisation imposed before they are recognised in law as having the capacity to give informed consent.)
(NEW (d) quater “ensure that persons with disabilities have access to their unedited health and medical records, and are entitled to give or withhold consent to disclosure of this information to third parties;”)
(e) prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance (DELETE: “where permitted by national law”), which shall be provided in a fair and reasonable manner.
Final Statement
IDC Statement on Article 25 Health
January 25, 2006
On behalf of the International Disability Caucus (IDC), we would like to make some additional comments with regard to Article 25.
We thank you, Chair, for the opportunity to raise these important issues for us.
Women’s IDC
Proposals on inclusion of gender aspects in a specific article
23.01.2006
States Parties recognise that persons with disabilities have the right to the enjoyment of the highest attainable standard of physical and mental health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to gender-sensitive health services, including health-related rehabilitation. In particular, States Parties shall:
(a) provide persons with disabilities with the same range and standard of affordable health services as provided other persons, [including sexual and reproductive health services] 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 amongst children and the elderly;
(c) provide these acceptable health services to persons with disabilities, as close as possible to people's own communities, including in rural and remote areas;
(c bis) develop and disseminate health policies and programs in fields such as family-planning and parenthood, pregnancy, childbirth and the post-natal period that are inclusive to women with disabilities and protect them against any form of coercive treatment to ensure that disabled women are enabled to decide freely and responsibly on the number and spacing of their children, without discrimination based on disability; 1
(d) require health professionals to provide care of the same quality to persons with disabilities as to others, taking into account the specific needs on the basis of the combined element of disability and sex and on the basis of free and informed consent by, where necessary, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through information, training, and the promulgation of ethical standards for public and private healthcare;
(e) prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where permitted by national law, which shall be provided in a fair and reasonable manner.
JUSTIFICATION:
Disabled women are not included in the mainstream health care programs, particularly maternal and gynaecological issues. There is a lack of knowledge of the interactive effects of disability and sex in the medical community. And testing equipments are not meeting the particular needs of women with disabilities. Furthermore, they are often sent to poorly equipped rehabilitation-focused facilities. Additionally they face stereotypes concerning their sexuality and parenting ability. Thus, the additional paragraph (c bis) is necessary to enable women with disabilities to enjoy their reproductive rights.
IDC response to the facilitator’s proposal on children
JAN 22nd 2006.
The IDC proposes an additional para
IDC proposed text
‘States Parties shall protect children from sterilisation on the basis of disability’
Rationale
In many countries in the world, parents arrange for girls with disabilities to be sterilised in order to avoid the risk of pregnancy and even to avoid the inconvenience of dealing with menstruation. Sterilisation of girls with disabilities represents a fundamental violation of their physical integrity. It exposes them to major medical intervention for no clinical benefit. It denies them the right to found a family. It is an intervention, in most instances, serving the interests of the parents rather than the child.
The principle of protection from forced interventions is insufficient to protect children with disabilities. The concept of ‘forced’ does not arise because, in most jurisdictions, the parents have the right to give consent while a child is a minor. ‘Force’ only arises if consent is over-ridden. And in these cases, the parent is giving consent. This amendment is essential if the practice of imposing sterilisations on children with disabilities is to be ended.
Women’s IDC
Response to the facilitator’s text on Women
Facilitator:
States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of physical and mental health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to gender sensitive health services, including health-related rehabilitation. In particular, States Parties shall:
(…)
b) bis) develop and disseminate policies and programs in fields such as family-planning and parenthood, pregnancy, childbirth and the post-natal period, that are inclusive of women with disabilities and protect them against any form of coercive treatment, including sterilization.
Women’s IDC
(…)
b) bis) develop and disseminate policies and programs in fields such as family-planning and parenthood, pregnancy, childbirth and the post-natal period, that are inclusive of women with disabilities and protect them against any form of coercive treatment, including (ADD: forced) sterilization (ADD: and abortion).
(…)
(d) require health professionals to provide care of the same quality to persons with disabilities as to others (ADD: and to enhance their knowledge and understanding of the combined element of disability and sex) and on the basis of free and informed consent by, (ADD: inter alia,) where necessary, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities, through (ADD: information,) training, and the promulgation of ethical standards for public and private healthcare;
Rationale:
Women’s IDC welcomes the Facilitator’s proposal. Disabled women are not included in the mainstream health care programs, particularly maternal and gynaecological issues. “Forced” sterilisation and “abortion” have to be added to clarify that women with disabilities are not “protected” from their equal rights concerning sterilisation and abortion. Furthermore, regarding the immense lack of knowledge of the interactive effects of disability and sex in the medical community, the Women’s IDC regards the proposed amendments in subparagraph (d) as essential.
Footnotes:
1. cp. Second facilitator’s text, August 2005, for Art. 23 or 25
Article 25
Revision:
In Paragraph (b), delete “including amongst children and the elderly”.
Comments:
In Paragraph (a), we support the term “including sexual and reproductive health services.”
MENTAL DISABILITY RIGHTS INTERNATIONAL
Draft Article 25
(Right to Health)
Thank you, Mr. Chairman.
MDRI is very concerned about several aspects of this Article. In particular we are concerned about its limitation of the concept of the right to health to “health services,” rather than to “health facilities, goods and services” as is recognized by the U.N. Committee on ESCR. We are even more concerned about the U.S. proposal to further limit this Article to “health care.” Both of these narrow terms (“services” and “care”) unnecessarily and prejudicially limit the concept of the right to the highest attainable standard of physical and mental health, as is recognized in international law.
It is important to mention that the U.N. Committee on Economic, Social and Cultural Rights has interpreted the “right to the highest attainable standard of physical and mental health”—which is recognized in those terms in article 12 of the ICESCR, as well as in the Inter-American and African regional instruments—in a broad way, to go well beyond “health services.” Thus, in ¶11 of its General Comment No. 14 it has stated:
“11. The Committee interprets the right to health, as defined in article 12.1, as an inclusive right extending not only to timely and appropriate health care but also to the underlying determinants of health, such as access to safe and potable water and adequate sanitation, an adequate supply of safe food, nutrition and housing, healthy occupational and environmental conditions, and access to health-related education and information, including on sexual and reproductive health. A further important aspect is the participation of the population in all health-related decision-making at the community, national and international levels.”
The Committee interprets Art. 12(2)(d) of the ICESCR as referring not only to “medical services” but to health facilities, goods and services, as well as the underlying determinants of health, and it refers to health in those terms. Thus, MDRI strongly supports the important proposal of South Africa, supported by Jordan, to broaden “health services” to “health facilities, goods, and services,” as is recognized by the U.N. Committee that monitors the ICESCR. We need to make sure that this Convention does not limit the right to health of PWD to a standard lower than that provided to other persons. We are in substantial risk of doing this by limiting health to “health services” in this Article. The referenced change should be made wherever “health services” arises in this Article, i.e., in the chapeau and in subparagraphs a), b) and c).
We are in even further danger of creating a lower standard for PWD if the Committee adopts the proposal of the United States to change “health services” to “health care.” Although “health services” is unduly narrow in not addressing facilities, goods, and the underlying determinants of health, “health services” is at least broader than “health care” in that it includes things that are not just care, but also financial support where necessary, transportation to and from clinics, and any other form of social assistance. The right to the highest attainable standard of physical and mental health means little without these essential aspects, which are already recognized in international law. As Senegal has stated, “health is everything.”
We underscore that political considerations can not enter into this Convention if we are serious about providing effective protection for the millions of persons with disabilities around our world that suffer daily human rights abuses with respect to their health—as highlighted by PAHO this morning. “Services” does not relate to abortion, it has nothing to do with it—as referenced by the EU, Uruguay and Costa Rica. Let us not let these political issues infect this Convention. Let us ensure that all PWD receive the same range and quality of health facilities, goods and services that all other persons receive. As emphasized by Canada, this article attempts to do nothing more. If it continues to be a concern, let it be reflected in the record.
Two very brief additional comments. First, the United States proposed changing “range and standard” of affordable health services” to “standard and quality.” MDRI strongly supports the addition of the word “quality”—a critical addition—but the replacement of “range” with standard does not make sense and in fact limits the usefulness of the term “quality.” Indeed, it omits the critical reference that persons with disabilities are entitled to the same “range”—meaning the full gamut—of health services, goods and facilities that are available to others, but it also makes “quality” seem synonymous with “standard.” This puts the provision in a “quality of care” framework, the typical health policy way of looking at things as opposed to human rights framework. This is not appropriate in this Convention, particularly as we seek a paradigm shift away from a medical model of disability.
Finally, and very briefly, this Article does not currently reference sufficiently the elements of availability, accessibility, acceptability and quality highlighted by the U.N. Committee on ESCR. In this regard, MDRI proposes changing the reference in the chapeau to “ensure access for PWD” to “ensure the availability and accessibility for PWD.”
In sum, we must ensure that this provision does not provide lower standards than currently exist in other international human rights instruments of universal application. It must reflect that the “right to health” is the right to health goods, services and facilities PLUS healthy conditions, that is, the underlying determinants of health—as made clear by the various U.N. Committees monitoring the other core international human rights instruments and by PAHO in its statement this morning, which MDRI strongly supports. MDRI also supports the inclusion of the right to free and informed consent—splitting subparagraph d) into two or three separate subparagraphs, as proposed by Mexico yesterday, to make this principle effective.
Thank you, Mr. Chairman.
PEOPLE WITH DISABILITY AUSTRALIA
Intervention
(Australian) National Association of Community Legal Centres
Mr Chairperson:
This intervention is made on behalf of People with Disability Australia and the Australian National Association of Community Legal Centres. Thank you for the opportunity to address the Ad Hoc Committee.
We intervene briefly to express our concern about the United States delegation’s proposal to delete the word “range” from paragraph “a” and insert the word “quality” in its place, which has been supported by a number of other delegations.
This amendment would remove from this paragraph the horizontal dimension connoted by the word “range”, which will assist in ensuring that persons with disability have access to the full breadth of health services, including for example child, women’s and indigenous health.
While there is nothing objectionable about the insertion of the word “quality” it does the same work in this paragraph as the word “standard”, both of which bring in a qualitative dimension. Only one of these words, “quality” or “standard”, is necessary to bring a qualitative dimension to the article and neither word adequately ensures access for persons with disability to the full range of health services.
For similar reasons, we are concerned about the United States delegation’s proposal to delete from paragraph “a” the reference to “health services” and insert in its place a reference to “healthcare.” The concept of “healthcare” is narrower than the words “health services” and might not include, for example, primary health programs and services. In our view this convention must mandate access for persons with disability to all health programs and services.
Thank you for the opportunity to address the Ad Hoc Committee.
PWDA
Report on National Consultations
Article 25
There was general support for the article and no amendments or revisions to the Chair’s Text are proposed.
SOCIETY OF CATHOLIC SOCIAL SCIENTISTS
January 25, 2006
Delivered by Andrea Vrchota
Thank you Mr. Chair for the opportunity to address the distinguished assembly.
On behalf of the Society of Catholic Social Scientists and as a disabled young woman, I would like to commend this convention and yourself for addressing so many pressing needs of disabled persons, especially young disabled women.
I hope to one day have and raise a family and I am supportive of the notion of comprehensive health care for women, but I have reservations concerning the narrow interpretation of women’s health care needs, by use of the terms “sexual and reproductive health care services”. I believe this term, therefore, is problematic, as the delegate of the Holy See has stated.
As a young Catholic woman with a disability, I am also troubled by the lack of equal health care to persons with disabilities, when their life hangs in the balance. Therefore, I would urge delegates to support Qatar’s language guaranteeing food and water to disabled persons whenever it would help to keep them alive.
As Ami in last night’s documentary proved, quality of life cannot be defined by a person’s disability or the medical profession’s opinions. My own doctors stated that I would not live past the first week of my birth. Therefore, no one should be denied food and water because their life is deemed to be less valuable to others.
On behalf of the Society of Catholic Social Scientists, again thank you, Mr. Chair.
Special Rapporteurs
INTERVENTION OF THE SPECIAL RAPPORTEUR ON RIGHT TO HEALTH
A Note on article 25 (health)
submitted to:
The Ad Hoc Committee on a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities
by
Paul Hunt, United Nations Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health
Introduction
1. I warmly congratulate the Ad Hoc Committee on the progress it has made towards finalising a text on the human rights of persons with disabilities.
2. While I have followed the development of the Committee’s work with great interest, unfortunately limited resources have made it very difficult for me to make specific substantive contributions to its deliberations. I hope, however, that some of my reports to the General Assembly and Commission on Human Rights have assisted the Committee’s task, such as the report on mental disability that I submitted to the Commission on Human Rights last year.
3. As the Committee considers article 25 on health, this Note makes a few brief remarks on that provision. If the Committee would welcome any additional comments, either on article 25, or other draft provisions, or particular issues such as informed consent, I am at the Committee’s disposal.
4. Part I of this short Note provides a few introductory remarks about the work I have already undertaken on disability, especially in relation to psychiatric and intellectual disability.
5. Part II makes some brief remarks about a selection of issues arising from article 25. I am not commenting on all of the important issues arising from article 25 – only a selection of them. Moreover, the remarks on the selected issues are very brief. The Conclusion makes two general remarks about article 25.
6. In this Note, I use ‘the right to health’ or ‘the right to the highest attainable standard of health’ as a convenient short hand for the longer formulation ie ‘the right to the enjoyment of the highest attainable standard of physical and mental health’.
Part I
7. Within the context of my work as United Nations Special Rapporteur, I have given particular focus to the right of health of persons with psychiatric and intellectual disabilities.
8. During country missions undertaken to Peru and Romania in 2004, I met with government officials and civil society organisations working on the right to health of persons with psychiatric and intellectual disabilities. I also had the opportunity to visit psychiatric institutions in both countries.
9. My annual report to the Commission on Human Rights in 2005 focuses on mental disability. The report, which draws on international human rights treaties and specialised international instruments, seeks to clarify the right to health as it relates to persons with mental disabilities. The report outlines a common analytical framework for the right to health which ‘unpacks’ this fundamental human right in terms of freedoms, entitlements, non-discrimination and equality, participation, international assistance and cooperation, monitoring and accountability, and so on. This framework was first developed in General Comment 14 of the Committee on Economic, Social and Cultural Rights. In my report, I elaborate and apply the framework in the context of the right to health of persons with mental disabilities.
Part II
10. Affordable: article 25(a). I welcome the reference to ‘affordable’. As the Chairman’s commentary remarks, this resonates with the approach taken by the UN Committee on Economic, Social and Cultural Rights. Moreover, this approach is increasingly followed in the right to health literature. For my part, I use the concept of ‘affordability’ in all my relevant reports.
11. Access to personal health records. Article 22 addresses the issue of privacy of medical and health records. Indeed, privacy is very important from the human rights perspective. However, an individual’s access to his or her own health records is also very important from the human rights perspective. In practice, such access is sometimes obstructed or denied. Apart from reflecting and respecting an individual’s autonomy, access to personal health records is also instrumental in enhancing accountability. How can a duty-bearer be held to account if the rights-holder has incomplete access to his or her relevant personal health information? Accordingly, I respectfully suggest that consideration is given to including an individual’s access to his or her personal health records in article 25 (or elsewhere in the text).
12. Training of health professionals: article 25(d). Human rights education for health professionals is an essential starting point for empowering health professions to respect and promote human rights in health care contexts. However, as Special Rapporteur, I have learnt that human rights are often not integrated into professional education and training programmes for health professionals. I therefore very much welcome the focus of article 25(e) on the responsibility of States to raise awareness of human rights among health professionals through training and promulgating ethical standards, with a particular focus on the rights and needs of people with disabilities.
13. I refer the Committee to my report of 2005 to the General Assembly, which includes a short chapter on human rights education for health professionals.
14. Sexual and reproductive health services: article 25(a). In 2003, the UN Commission on Human Rights confirmed: “sexual and reproductive health are integral elements of the right of everyone to the enjoyment of the highest attainable standard of physical and mental health”. The Commission re-affirmed this position in 2004. In this way, the Commission reflected the internationally understood meaning of the right to health, as enshrined in the International Bill of Rights, as well as other international instruments.
15. Moreover, it is also widely recognised that achieving the health-related Millennium Development Goals, such as those on maternal health and HIV/AIDS, will not be possible without widespread and equitable access to sexual and reproductive health services.
16. Unfortunately, notwithstanding international human rights law and the Millennium Development Goals, the record shows that persons with disabilities are often denied sexual and reproductive health services. Such policies and practices are discriminatory, in breach of the right to health, and lead to avoidable suffering. Further, they treat persons with disabilities as though they do not possess some of the attributes of being human: a sexual and reproductive capacity.
17. Because of the history of neglect surrounding this important issue, I respectfully suggest that there is a strong case for removing the brackets around the words “including sexual and reproductive health services” in article 25(a), as well as around the word “sexuality” in article 8(2)(a)(ii).
Conclusion
18. In conclusion I would like to raise two general points about article 25.
19. First, the chapeau rightly includes the formulation of the right to health that is referred to in the International Covenant on Economic, Social and Cultural Rights (ICESCR), the Convention on the Rights of the Child (CRC), and other key international instruments ie “the right to the enjoyment of the highest attainable standard of physical and mental health”. It is widely accepted that this formulation includes access to health care services, as well as access to those services relating to the underlying determinants of health, such as adequate sanitation and safe drinking water. Indeed, the detailed provisions of ICESCR and CRC explicitly include both health care services and the underlying determinants of health. For example, article 24(2)(b) of CRC refers to “the provision of necessary medical assistance and health care”, while article 24(2)(c) refers to “clean drinking water”.
20. While the chapeau of article 25 uses the wide inclusive formulation of the right to health, thereafter all references in article 25 would appear to be to health care services, rather than the underlying determinants of health, with the exception of the last words of article 25(a) “population-based public health programmes”.
21. In these circumstances, I respectfully suggest that further consideration is given to ensuring that article 25 is clearly understood to cover, not only health care services, but also the underlying determinants of health that constitute such a vital part of the right to the highest attainable standard of health.
22. Second, while researching my report of 2005 on mental disabilities I gained the firm impression that persons with intellectual disabilities remain among the most neglected – the most ‘invisible’ – members of our communities. Their neglect is reflected in society at large, among the health professions, and in the human rights community.
23. I see the important work of the Committee as providing a unique opportunity to address this historic, systemic neglect of all those with disabilities, not least those with intellectual disabilities.
Paul Hunt, 24 January 2006