PART 2:
THE CONVENTION ON THE RIGHTS
OF PERSONS WITH DISABILITIES
Chapter 8:
The Right to Health
Convention on the Rights of Persons with DisabilitiesArticle 25, Health
States Parties recognize 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 minimize and prevent further disabilities, including among children and older persons.
(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, 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.Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.
OBJECTIVES
The information contained in this chapter will enable participants to work towards the following objectives:
· Understand what is meant by the right to the “highest attainable standard of health”.
· Define the relationship between health and disability.
· Define the distinction between health care and habilitation/rehabilitation services.
· Understand and explain to others the importance of equal access to health care resources for persons with disabilities.
· Understand the interrelationship between the right to health and other human rights.
· Identify ways in which the right of persons with disabilities to the highest attainable standard of health have been promoted, denied, or misunderstood.
· Understand the provisions on health in the Convention on the Rights of Persons with Disabilities (CRPD).
GETTING STARTED: THINKING ABOUT HEALTH AS A HUMAN RIGHT
What does the right to health include? Is it a right to be healthy? Is it a right to have health care services? Is it something else? We know that with every human right comes a corresponding responsibility for governments and society to ensure that this right is respected, protected, and fulfilled. But no one can guarantee the right to be free from all disease.
However, societies and governments do have great control over many underlying determinants of health, including physical conditions in the environment that affect people’s health, such as public sanitation, the availability of clean water, and environmental pollution levels. In addition, societies have laws, policies, and programmes aimed at promoting and protecting human health. Every country has a health system to provide medical care and public health programmes designed to provide information about health risks, disease prevention, and healthy living. Governments are responsible for the quality and equity of national health systems. Furthermore, health for all people is also directly affected by other human rights, such as access to education, employment, and an adequate standard of living. Poor or uneducated people are far more likely to suffer ill-health than those with economic security and decent living conditions. These examples demonstrate how the right to health is indivisible, interdependent, and interrelated with other human rights.
Violations and Barriers to the Right to Health
Poverty, lack of education, poor living conditions, and other human rights issues that impact human health disproportionately affect persons with disabilities. For instance, in many countries clean water may be publicly available but not accessible to persons with disabilities. Likewise, health care is often not accessible or available to persons with disabilities on an equal basis with others because of factors like inaccessible buildings, lack of communications accommodations in the health care setting, and even denial of treatment based on a disability. Health services and important information about health are often inaccessible to persons with disabilities. For example, some countries broadcast information about HIV/AIDS education over the radio but do not provide that information in a manner that is accessible to persons who are deaf. In addition, many health clinics located in rural areas are not physically accessible to persons who use wheelchairs. Health care providers often do not provide important materials, such as consent forms or information about prescription drugs, in a manner that is accessible to persons who are blind or visually impaired. Persons with psychosocial or intellectual disabilities may be stripped of their right to make decisions related to their own health or may only receive limited information about treatment options.
While governments are not responsible for ensuring good health, they are responsible for addressing factors in the social, economic, legal, and physical environment that impact health. Thus, health as a human rights issue is framed in terms of the “highest attainable standard of health.” In other words, people have a right to the conditions and resources that promote and facilitate a healthy life.
DEFINING HEALTH
In addition to understanding what is meant by the right to health, it is also important to understand what is meant by health. In the Preamble to its Constitution, the World Health Organization (WHO) defines health in the following broad terms:
Health is a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity.
The WHO also affirms the definition and importance of the right to health in the Preamble to its Constitution with the following statement:
The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, political belief, economic or social condition . . . Governments have a responsibility for the health of their peoples which can be fulfilled only by the provision of adequate health and social measures.
Disability and Health
While it is commonly accepted that there are many issues, such as literacy and poverty level that can adversely affect human health, disability has traditionally been viewed as inherently being a health issue. In reality, persons with disabilities experience disease and illness in the same way that other people do. They can be in good health or poor health, just like anyone else. Some persons with disabilities may be more vulnerable to communicable illnesses, such as influenza, and it is certainly true that some disabilities have the potential to create health problems, known as “secondary conditions.” Common examples of secondary conditions include, for example, pressure sores and respiratory distress in persons with mobility impairments. It is also true that some health problems can cause permanent disabilities and/or create temporary disabling conditions. In other words, a disability can be both a cause and an effect of a health problem, or a disability can be present in a completely healthy person.
When disability is classified as a “health problem,” people think of a disability as being the same thing as an illness or disease. Therefore, the medical community is regarded as responsible for “curing” or “treating” disability, rather than it being the responsibility of governments and societies to address disability as part of the social or human rights agenda. The “medical model of disability” focuses on prevention, cure, and symptom management of the disability by the health profession. Unfortunately, this approach does nothing to help eliminate the fundamental problems of discrimination, lack of access, and other social and political issues that create barriers to the right to health for persons with disabilities.
Health and Habilitation/Rehabilitation
Closely related to the perception of disability in narrow terms as a health issue and reinforced by the medical model of disability is the notion that habilitation and rehabilitation are also medical subjects and therefore part of the health context. Habilitation and rehabilitation include a range of measures – physical, vocational, educational, training-related, and others – necessary to empower persons with disabilities to maximize independence and the ability to participate in society, not simply to achieve physical or mental health. For this reason, the right to health and the right to habilitation and rehabilitation are addressed separately in the CRPD. The exception, of course, is that health-related rehabilitation is recognized as part of the right to health. This would include, for example, physical therapy to strengthen muscles that are affected by an injury, illness, or disability.
The Medical Model vs. the Social ModelThe Medical Model of Disability
Perhaps the most significant and widespread myth affecting human rights and disability is the idea that disability is simply a medical problem that needs to be solved or an illness that needs to be “cured.” This notion implies that a person with a disability is somehow “broken” or “sick” and requires fixing or healing. By defining disability as the problem and medical intervention as the solution, individuals, societies, and governments avoid the responsibility of addressing the barriers that exist in the social and physical environment. Instead they place the burden on the health profession to address the “problem” in the person with the disability. Many governments throughout the world have fuelled the medical model by funding extensive medical research that aims to find the “cure” for certain disabilities, while not providing any funding to remove the barriers that create disability in society.
The Social Model of Disability
The social model envisions disability as something that is created by the barriers and attitudes in society, not a trait or characteristic that is inherent in the person. Under the social model, society creates many of the social and physical barriers we consider “disabling,” and this model focuses on eliminating those barriers, not on “fixing” or “curing” disabilities. This includes modifying the built environment, providing information in accessible formats, and making sure that laws and policies support the exercise of full participation and non-discrimination.
WHAT DOES HUMAN RIGHTS LAW SAY ABOUT THE RIGHT TO HEALTH?
The human right to health was first recognized, although indirectly, in Article 25(1) of the Universal Declaration of Human Rights (UDHR):
Everyone has the right to a standard of living adequate for the health and wellbeing of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.
The UDHR focuses on the human rights associated with an adequate standard of living, but it clearly states that the ultimate objective of those rights is to achieve the “health and well-being” of the individual. Thus, the right to health is inextricably linked to other human rights, such as housing, social security, and, of course, medical care itself.
In 1966, the human right to health was defined in Article 12 of the International Covenant on Economic, Social and Cultural Rights (ICESCR):
The States Parties to the present Covenant recognize the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.
This language remains the fundamental expression of the right to health in the context of human rights. However, given the complexity of the subject, the Committee on Economic, Social and Cultural Rights, which monitors implementation of the ICESCR, issued General Comment 14 to articulate more fully the freedoms, entitlements, and substantive obligations associated with the right to the highest attainable standard of health guaranteed by the ICESCR:
The right to health is not to be understood as a right to be healthy. The right to health contains both freedoms and entitlements. The freedoms include the right to control one’s health and body, including sexual and reproductive freedom, and the right to be free from interference, such as the right to be free from torture, non-consensual medical treatment, and experimentation. By contrast, the entitlements include the right to a system of health protection that provides equality of opportunity for people to enjoy the highest attainable level of health.
An important analytical framework used to deepen understanding of the content of the right to health is that health services, goods, and facilities, including the underlying determinants of health, shall be available, accessible, acceptable, and of good quality. This framework applies to mental and physical health care and related support services provided to persons with disabilities.
The AAAQ Framework Applied to Persons with DisabilitiesAvailability: Health care facilities, goods, and services must be available in adequate numbers through a State, including adequate numbers of health care providers trained to provide disability-specific support and mental health-related services.
Accessibility: Includes four overlapping dimensions:
· Non-discrimination: Mental and physical health care services must be available without discrimination on the basis of disability or any other prohibited ground. States must take positive measures to ensure equality of access to persons with disabilities. States must also ensure that persons with disabilities get the same level of medical care within the same systems as others.
· Physical accessibility: Health facilities, goods, and services must be within safe physical reach for persons with disabilities and other vulnerable or marginalized groups, such as ethnic minorities and indigenous populations, women, children, adolescents, older persons, and persons with HIV/AIDS. Accessibility also implies that medical services and underlying determinants of health, such as safe and potable water and adequate sanitation facilities, are accessible, within safe physical reach, including in rural areas. Accessibility further includes adequate access to buildings for persons with disabilities.
· Economic accessibility: Health facilities, goods, and services, including medicines and assistive devices, must be economically accessible (affordable) to consumers with disabilities.
· Information accessibility: Accessibility includes the right to seek, receive, and impart information and ideas concerning health issues. Information relating to health and other matters, including diagnosis and treatment, must be accessible to persons with disabilities. This entitlement is often denied to persons with disabilities because they are wrongly judged to lack the capacity to make or participate in decisions about their treatment and care. However, accessibility of information should not impair the right to have personal health data treated with confidentiality.
Acceptability: Health care facilities, goods, and services provided to persons with disabilities must be culturally acceptable and respectful of medical ethics.
Quality: Health care facilities, goods, and services provided to persons with disabilities must be of good quality, as well as scientifically and medically appropriate. Among other things, this quality requirement mandates skilled medical and other personnel who are provided with disability training, evidence-based interventions, scientifically approved and unexpired drugs, appropriate hospital equipment, safe and potable water, and adequate sanitation.
Source: Adapted from Committee on Economic, Social and Cultural Rights, General Comment 14, The right to the highest attainable standard of health (22nd session, 2000), U.N. Doc. E/C.12/2000/4 (11 August 2000): http://hrlibrary.law.umn.edu/gencomm/escgencom14.htm
General Comment 5 of the ICESCR was developed by the Committee on Economic, Social and Cultural Rights to address disability in the context of the Covenant, including the subject of health. Together, ICESCR General Comments 5 and 14 make it clear that persons with disabilities have the right not only to accessible health care services, but also to equality and non-discrimination in relation to all aspects of the right to health. This includes equal access to available healthcare services and to equality with respect to the resources, conditions, and underlying determinants required for the highest attainable standard of health.
CRPD Article 25, Health, reinforces these previous standards of general equality, non-discrimination, and access issues and expands upon States’ obligations in specific areas, in particular:
· The right to sexual and reproductive health services.
· Access to population-based public health programmes.
· Services provided as close as possible to people’s communities.
· Provision of disability-specific health services, including prevention of further disabilities.
· Autonomy and independence in healthcare decisions, on the basis of free and informed consent.
· Non-discrimination in access to health insurance and life insurance.
· Prohibition against the denial of care, including food and fluids, on the basis of disability.
Article 25 must be read in conjunction with CRPD Article 9, Accessibility, among other cross-cutting provisions. Article 9 addresses the general topic of access, requiring that States Parties take appropriate measures to ensure equal access to facilities and services open or provided to the public, including physical premises, and communications and information systems.
The Duty to Respect, Protect, and Fulfil Obligations Relating to the Right to Health
Taken as a whole, States’ obligations with regard to health include:
1. Obligation to respect: States must refrain from denying or limiting equal access to health care services, as well as to the underlying determinants of health for persons with disabilities.
Example: The State repeals a law that discriminates against persons with disabilities in their access to health care and adopts a law that recognizes that persons with disabilities in public or private institutions, such as hospitals or prisons, may not be denied access to health care and related support services, or water and sanitation.
2. Obligation to protect: States must take all appropriate measures to ensure that third parties, such as health clinic professionals, service provider organizations, or others do not harm the right to health of persons with disabilities.
Example: The State takes measures to ensure that health care providers do not discriminate against persons with disabilities in the provision of health care.
Example: The State adopts specific measures to ensure that persons with disabilities are effectively reached in public health programmes, such as infectious disease prevention education.
Example: The State provides reasonable accommodations to ensure equal access to health services for persons who are deaf in the form of on-call sign language interpreter services at medical facilities.
Example: The State investigates reports of discriminatory treatment of patients with disabilities.
3. Obligation to fulfil: States must be proactive in their adoption and implementation of measures to give effect to the principles of equal access and non-discrimination in health care provisions.
Example: The State provides disability training to health care providers to help them understand how to effectively accommodate consumers with disabilities.
Example: The State provides information on dental services in accessible formats for persons with disabilities, such as plain language for persons with intellectual disabilities.
Example: The State ensures that the right to health of persons with physical and mental disabilities is adequately reflected in their national health strategy, plan of action, and other policies, such as national poverty reduction plans.
In sum, international human rights law strongly supports the right of persons with disabilities to have equal and effective access to health services. The enjoyment of the right to health facilitates the enjoyment of other rights by persons with disabilities.
Health Promotion and Disease Prevention
Persons with disabilities benefit from healthy choices and suffer from illnesses and accidents just like everyone else. However, the incidence of infectious diseases and other preventable conditions among persons with disabilities is often higher than for the rest of the population because public health programmes fail to provide information in accessible formats and do not make an effort to target persons with disabilities. Participation by persons with disabilities and their representative organizations in the design and implementation of public health efforts is essential to ensuring that persons with disabilities are able to benefit from these crucial programmes.
The CRPD specifically recognizes the importance of gender-sensitive health services and the need for equal access to sexual and reproductive health and population-based health programmes. Even though the CRPD makes it clear that all public health programmes must include persons with disabilities on an equal basis with others, these particular subjects are highlighted because they are areas in which persons with disabilities are often assumed to be a-sexual, forgotten, de-prioritized, or simply discriminated against in health care systems and national and international health agendas.
CASE STUDY
Concerning Non-discriminatory Health Care AccessPurohit and Moore v. The Gambia: In a complaint to the African Commission on Human and Peoples’ Rights on behalf of mental health patients detained in a unit, legislation governing mental health, the Lunatics Detention Act of 1917, was challenged. The complaint alleged that the Act contained no guidelines for making a determination and diagnosis of mental disability; included no safeguards required during the diagnosis, certification, or detention of the person; and lacked requirements for consent to treatment, independent examination of hospital conditions, and provision for legal aid or for compensation in the case of a rights violation. The Commission held, among other things, that The Gambia failed to comply with requirements of Articles 16 (best attainable standard of physical and mental health) and 18(4) (right to special measures for disabled persons with regards to moral and physical needs) of the African Charter on Human and Peoples’ Rights. Furthermore, the Commission held that States Parties were required to take concrete and targeted steps to ensure the right to health. Purohit and Moore v. The Gambia, Communication 241/2001 (2003) AHRLR 96 (ACHPR 2003).
Eldridge v. British Columbia: A group of deaf applicants challenged the absence of sign-language interpreters in the publicly funded health care system.The Supreme Court of Canada held that provincial governments had a positive obligation under the Canadian Charter of Rights and Freedoms to address the needs of disadvantaged groups such as persons with disabilities. The Court held that the applicants had a right to publicly funded sign-language interpretation in the provision of health care and that the failure of the authorities to ensure that the applicants benefited equally from the provincial medicare scheme amounted to discrimination. Eldridge v. British Columbia (Attorney General) [1997] 2 S.C.R. 624.
Victor Rosario Congo v. Ecuador: The Inter-American Commission of Human Rights, which monitors the American Convention on Human Rights, held that in the case of persons with mental disabilities, prison settings must also be appropriate for their mental and physical needs. Victor Rosario Congo v. Ecuador, Case 11.427, Report No. 63/99, Inter-Am. C.H.R., OEA/Ser.L/V/II.95 Doc. 7 rev. at 475 (1998).
Keenan v. United Kingdom: The European Court of Human Rights found a violation of the prohibition on inhuman and degrading treatment where a person with a mental disability was detained in squalid, inhumane conditions without receiving appropriate treatment. Although the European Convention for the Protection of Human Rights and Fundamental Freedoms does include the right to health, this case clearly also reflects violations of the right to health due to the potential for significant physical and mental deterioration or even death. Keenan v. United Kingdom, App. No. 27229/95, 33 Eur. H. R. Rep. 913, 964 (2001).
Persons with Disabilities and HIV/AIDS
In 2004, the World Bank, working in partnership with the Yale School of Public Health, conducted a Global Survey on HIV/AIDS and Disability with preliminary findings from this and follow-on research suggesting that persons with disabilities have infection rates comparable to, and quite possibly significantly higher than, rates found in the general public.
Very often, children, adolescents, and adults with disabilities are invisible in HIV/AIDS outreach efforts due to stigma and discrimination, including the common and wholly false assumptions that persons with disabilities are not sexually active, are unlikely to use drugs or alcohol, and/or are at less risk of violence or rape than their non-disabled peers. Persons with disabilities are more vulnerable to infection if they do not have ready access to information, education, and services necessary to ensure sexual and reproductive health and prevention of infection. Poverty exposes women and girls with disabilities to sexual exploitation, and research suggests that a large percentage of persons with disabilities will experience sexual assault or abuse during their lifetime. Vulnerability also decreases the likelihood of being able to negotiate safe sex. Persons with intellectual disabilities and persons with disabilities living in institutional settings also experience elevated risks of sexual violence and abuse. Physical barriers to centres for HIV prevention as well as voluntary counselling and testing (hereafter VCT), treatment, and care limit access for persons with mobility impairments. Likewise, transport may be unavailable or inaccessible to persons with disabilities. Communication barriers limit access of HIV/AIDS messaging, such as radio programming, to persons who are deaf.
For individuals with disabilities who are HIV-infected, poverty and barriers such as lack of transport to medical treatment centres hampers effective access to care and treatment, including antiretroviral and other medications for opportunistic infections. Privacy and confidentiality may be compromised for persons with disabilities in the context of HIV testing and counselling owing to the presence of personal assistants or sign language interpreters. Where access to antiretroviral therapy and post-exposure prophylaxis is limited, persons with disabilities may not be prioritized for treatment on account of disability-related stigma and discrimination.
Participation in Medical Decision-making
Under international human rights law, the population is entitled to participate in health-related policy decision-making at all levels. The right to participate extends to persons with disabilities who, like all persons, have the right to participate in decision-making processes that affect their health and development, as well as in every aspect of service delivery. CRPD Article 25, Health, reinforces the principles in CRPD Article 12, Equal recognition before the law, related to the freedom to make decisions about one’s health care. It specifies that States Parties must 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” and to adopt measures that raise awareness about “human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care.”
Failure to respect the independence, autonomy, and dignity of persons with disabilities in the context of medical decision-making led to horrific human rights abuses against children and adults with disabilities, including forced sterilization, cruel and totally bogus methods to “cure” specific behaviours in persons with psychosocial disabilities, psycho-surgery such as lobotomies, therapeutic, and non-therapeutic biomedical research, and experimentation. The right to be free from torture and other forms of violence is addressed in detail in Part 2, Chapter 6, Freedom from Torture and Other Forms of Abuse.
Finally, persons with disabilities, like all people, are entitled to all treatment and life-sustaining measures available, and they are also entitled to forgo such care as a matter of individual choice. This is a matter of equality, both in terms of the right to life and with respect to the right to personal integrity and decision making regarding one’s own medical treatment.
USEFUL RESOURCES ON THE RIGHT TO HEALTH
· The Center for Universal Design and The North Carolina Office on Disability and Health, Removing Barriers to Health Care: A Guide for Health Professionals: http://www.fpg.unc.edu/~ncodh/rbar
o Provides helpful guidance on making health care accessible.
· Committee on Economic, Social and Cultural Rights, General Comment 14, The right to the highest attainable standard of health (22nd session, 2000), U.N. Doc. E/C.12/2000/4 (11 August 2000): http://hrlibrary.law.umn.edu/gencomm/escgencom14.htm
o General Comment providing detailed analysis of the right to health under the ICESCR.
· Office of the High Commissioner for Human Rights/World Health Organization, The Right to Health, Fact Sheet No. 31: http://www.ohchr.org/Documents/Publications/Factsheet31.pdf
o Comprehensive coverage of the right to health under international human rights law.
· Office of the High Commissioner for Human Rights & UNAIDS, International Guidelines on HIV/AIDS and Human Rights: Consolidated Version (Geneva: OHCHR & UNAIDS) (2006): http://data.unaids.org/Publications/IRC-pub07/jc1252-internguidelines_en.pdf
o Detailed guidelines on health and human rights in the context of HIV/AIDS.
· Nora E. Groce, et al, “HIV/AIDS and Disability: Capturing Hidden Voices” (New Haven, Connecticut: World Bank Group/Yale School of Public Health) (2004): http://globalsurvey.med.yale.edu
o Leading study on HIV/AIDS and disability.
· Janet E. Lord, David Suozzi & Allyn L. Taylor, “Lessons from the Experience of the UN Convention on the Rights of Persons with Disabilities: Addressing the Democratic Deficit in Global Health Governance,” 38 J. Law. Med. & Ethics 564 (2010).
o Assessing the implications of the CRPD for global health governance.
· National Council on Disability, The Right to Health: Fundamental Concepts and The American Disability Experience (2005): http://www.ncd.gov/publications/2005/08022005-Concepts
o Overview of health and disability within the US and international human rights contexts.
· Special Rapporteur on the Right of Everyone to the Enjoyment of the Highest Attainable Standard of Physical and Mental Health: http://www.ohchr.org/english/issues/health/right
o Webpage for the Special Rapporteur on the Right to Health.
· Special Rapporteur on the Right to Health, “Mental Disability and the Right to Health” (11 February 2005): http://daccess-dds-ny.un.org/doc/UNDOC/GEN/G05/108/93/PDF/G0510893.pdf?OpenElement
o Detailed report by the Special Rapporteur on mental disability and health rights.
· Michael Stein, Janet E. Lord & Dorothy Weiss, “Equal Access to Health Care under the UN Disability Rights Convention,” in Medicine and Social Justice: Essays on Distribution and Care (Rosamond Rhodes et al. eds. 2012).
o Discussion of health rights in the context of the CRPD.
· UNAIDS, World Health Organization & Office of the High Commissioner for Human Rights, “Disability and HIV Policy Brief” (2009): http://data.unaids.org/pub/Manual/2009/jc1632_pol_brief_disability_long_en.pdf
o Introducing the intersections between HIV/AIDS and disability.
· United National Population Fund, “Emerging Issues: Sexual and Reproductive Health of Women with Disabilities,”: http://www.unfpa.org/upload/lib_pub_file/741_filename_UNFPA_DisFact_web_sp-1.pdf
o Overview of main issues confronting women with disabilities in the sexual and reproductive health context.
· World Health Organization & World Bank, World Report on Disability (2011): http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf
o First ever world report on disability with comprehensive coverage of health issues.
