Indigenous Children - Their Human Rights, Mortality, and the Millennium Development Goals

The first effective attempt to promote children's rights was the Declaration of the Rights of the Child, drafted by Eglantyne Jebb in 1923 and adopted by the League of Nations in 1924.1 On 20 November 1959, the United Nations General Assembly adopted a much expanded version as its own Declaration of the Rights of the Child, with ten principles in place of the original five.2 The United Nations Convention on the Rights of the Child (UNCRC) was the first legally binding international instrument to incorporate the full range of human rights, describing child-specific needs and rights.3 These human rights included civil, cultural, economic, political, and social rights, as well as aspects of humanitarian law.3 The UNCRC was signed in 1989, and entered into force in 1990. As of May 2010, it had 193 parties which had ratified, accepted, or acceded with stated reservations or interpretations, including every member of the United Nations except Somalia and the United States, which have only signed.3
Nations that ratify this international convention are bound to it by international law. While all the rights contained in the Convention apply to all children, whether indigenous or not, the Convention on the Rights of the Child was the first core human rights treaty to include specific references to indigenous children in a number of provisions (namely, articles 17, 29, and 30). Despite an increased awareness of the rights of indigenous people within the international forum, indigenous children remain amongst the most marginalized groups within our society.4 Further, in Australia, Canada, New Zealand, and the United States, the indigenous to non-indigenous infant mortality ratios range from 1.6 to 4.0.5
In 2000, the United Nations Millennium Declaration was adopted by the General Assembly.6 Eight Millennium Development Goals (MDGs) were developed with each of the Goals having specific measurable indicators. Four of the MDGs concern reducing extreme poverty, reducing child mortality rates, fighting disease epidemics such as HIV/AIDS, and developing a global partnership for development. All 192 members of the United Nations and at least 23 international organizations have agreed to achieve these goals by 2015. MDG 4 aims to reduce child mortality, and the specific target is to reduce by two-thirds, between 1990 and 2015, the under-five mortality rate. The indicators for MDG 4 are under-five and infant mortality rates, and the proportion of one-year-old children immunized against measles.7
In this article I will consider the role (and limitations) of health statistics in monitoring the progress towards achieving the targets in reducing mortality rates in children under five and in infants (MDGs 4.1 and 4.2)among indigenous populations, and I will argue that in order to monitor and measure the impact of initiatives, strategies, policies, or practices aimed at achieving the targets, the human right to be counted must be universally exercised. The barriers to obtaining accurate and complete identification of indigenous persons in vital statistics and administrative data will be considered.
Human rights have been described by the United Nations Children's Fund (UNICEF) as "those rights which are essential to live as human beings -- basic standards without which people cannot survive and develop dignity: everyone, everywhere has the same rights as a result of our common humanity."8 Human rights discourse argues that "governments have an international obligation to take proactive steps to improve the health and wellbeing of minority, disadvantaged and marginalized population groups".9 These principles are expressed as a universal right to the opportunity to lead a healthy life, including equal access to quality care and the underlying social determinants of health. 9, 10, 11, 12 This "right" should not to be interpreted as an explicit right to good health, but rather as a right to the highest attainable standard of health.13
If we are to have an accurate understanding as to whether these principles have been upheld for indigenous infants and children worldwide, then we must be able to acknowledge the existence of indigenous people in population statistics and measure changing health status over time. We must not deny people the right to define themselves.14 It is indeed a human right to be counted in population statistics in an accurate and timely manner and indigenous children should not be "invisible" in national and international statistics.15
Further, as infant and early childhood mortality statistics are important indicators of a population's health, an accurate picture of mortality informs a moral society of its social progress on a national and/or community level. This is particularly valid given that causes of infant and childhood mortality, such as infections, are potentially preventable. Others, such as low birth weight or preterm birth can be partially prevented with good health care and antenatal interventions.16 Studies of the trends in mortality and related statistics demonstrate the changing health status of the population.
Measuring and monitoring indigenous rates and causes of morbidity and mortality as well as access to care is made possible through the identification of indigenous status (or ethnicity) in datasets, such as birth, hospital and death collections and registries, health surveys, and population censuces. These data are disaggregated by indigenous status to enable reporting on indigenous and non-indigenous populations and comparisons between the two. Health data disaggregated by indigenous status also provide an evidence base for the development of health policy and programmes, evaluating services and interventions, and monitoring public expenditure.17, 18, 19 At a local level, these data enable assessment of the cultural appropriateness and responsiveness of health services to the needs of their clients. These data can be a valuable tool for communities in advocating for policy change and monitoring political accountability.19 Internationally, these data are used to monitor and report on indigenous health in an international context, applying an additional degree of political accountability.19
Analysis of expenditure per capita, disaggregated by indigenous status also provides a baseline on which to assess the human right to an equal opportunity to good health.19
However, a statistical approach to measuring a population-level enjoyment of the right to health has its limitations due to issues of accuracy and completeness of identification of indigenous status.14,17,19 Issues are generally due to a combination of differential classification of indigenous persons, the changing propensity to identify one's indigenous status, and/or inconsistencies in the routine asking of the question by census staff.17, 18,19

Identifying indigenous peoples globally is also confounded by differences in classification across borders and according to use.14 There are legal definitions, anthropological perspectives, and criteria used to identify persons in health records. In different circumstances, identification can rely on self-identification, require legal proof of identify, and/or proof from the community.14

In order to achieve the targets identified under MDG 4, we must be able to describe and monitor indigenous child health outcomes. This requires complete, accurate, reliable, and valid ethnicity data. However, despite wide acknowledgments of the significant disparities in the provision of healthcare and resulting health inequalities between indigenous and non-indigenous children, specific data describing indigenous children is lacking.4
Under-registration of indigenous births and deaths, and in some cases of entire groups of indigenous peoples, have been reported; they are being excluded from indigenous datasets.20 Remoteness and accessibility issues for many indigenous communities, the role of self-identification and classification of "indigenousness", and the history of institutionalized discrimination against indigenous peoples by settler populations result in disjointed and incomplete data.19 In Canada there are no infant mortality rates for non-status Indians and Métis despite the fact that when combined these two populations represent almost half of the Aboriginal-identified population in Canada.20
In Australia, it is estimated that only 59 per cent of Aboriginal and Torres Strait Islander children (0-14 years) are included in national infant and childhood mortality statistics due to incomplete and inaccurate identification in some states and territories.21, 22 This being the case, the ability to measure progress in achieving improvements in indigenous infant and child mortality is significantly compromised at best, and at worst, completely impossible. One of the barriers to determining accurate indigenous infant mortality rates in Canada is the absence of a consistent identifier in provincial and territorial infant birth and death registrations that is inclusive of all major Aboriginal groups.23 All too often in the past we have seen the effect of policies that reflect the principle of "no data, no problem, no change".
There is no doubt that attitudes are changing with regards to a genuine commitment of many federal and jurisdictional governments worldwide to reduce the unacceptably high inequalities in infant and child mortality being observed in indigenous populations and to improve the accuracy and coverage of indigenous identification. The accompanying policies, interventions, and health promotion education programmes are to be applauded.
The "Close the Gap" catch cry about indigenous infant and child mortality is being proclaimed in many indigenous communities, along the corridors of industry, and in the offices of federal and jurisdictional governments worldwide, and it is reflected in the intent of the MDGs. The transition from talking about "closing the gap" to action in achieving such closure will occur through the implementation of well-devised, evidence-based initiatives developed in close consultation with indigenous communities and those with specialist health knowledge and expertise.
However, we will also need to know how much impact such initiatives and policies have had on addressing the disparities in infant and child mortality and the social determinants of health that underpin these disparities. Thus, we need to be sure of the accuracy of the baseline from which we measure the changes in the current status. Improving the accuracy of indigenous identification in data collections must be achieved at the point of collection, through educating those who collect the information and those about whom the data are being collected as to the importance of collecting accurate information about indigenous status. Such education would include how these data are used to better inform policies, practices, and strategies. Assurances must be given and adhered to so that the data collected will not be used to discriminate against indigenous groups, and it becomes the responsibility of services to provide an environment where it is safe to identify one's cultural/ethnic origins without fear of discrimination.
The exclusion of indigenous persons or communities from basic public health surveillance based on their chosen place of residence, ethnic identity, or the use of government defined indigenous categories over indigenous determinations of identity and membership clearly violates the UN Declaration on the Rights of Indigenous Peoples.
Without accurate identification of indigenous persons in health datasets, we cannot accurately describe and monitor indigenous births, deaths, and child health outcomes. We cannot answer the questions: Who are our indigenous peoples? What is their current standard of health and how does it compare to other members of the population? Why is their health so poor and how can opportunities for better health care and health outcomes be supported and increased?
Accurate and complete indigenous status data will provide the evidence to answer such questions as: Are we there yet? Have we achieved the MDG 4 target to reduce child mortality? Has progress been made to ensure that the rights of the child are being promoted and that the opportunity for good health for indigenous and non-indigenous children is equal?

The author acknowledges Bree Heffernan, Research Assistant, Centre for Health and Society, University of Melbourne, in the preparation of this paper.

Notes

1 History of UNICEF: http://en.wikipedia.org/wiki/Declaration_of_the_Rights_of_the_Child
2 United Nations Declaration on the Rights of the Child: http://daccess-dds-ny.un.org/doc/RESOLUTION/GEN/NR0/142/09/IMG/NR014209....
3 United Nations Convention on the Rights of the Child: http://www.un.org/documents/ga/res/44/a44r025.htm
4 S. Woolley, "The rights of indigenous children around the world-still far from a reality", Arch Dis Child. Vol. 94, Issue: 5, (2009): p397-400.
5 J. Smylie, J. Freemantle, D. McAullay, M. Taualii, S. Crengle, K. McShane, P. Adomako, G. Gilbert, "Health of Indigenous Children: Health Assessment in action", Health Canada (2009).
6 United Nations Millennium Declaration on 8 September 2000: http://www.un.org/millennium/declaration/ares552e.pdf
7 United Nations Development Program, Millennium Development Goals: http://www.undp.org/mdg/basics.shtml
8 UNICEF Convention on the Rights of the Child: http://www.unicef.org/crc/index_framework.html
9 N. Gray, "Can human rights discourse improve the health of Indigenous Australians?" Australian and New Zealand Journal of Public Health, Oct 2006, Vol.30 i5, p448 (5).
10 A. Hendriks, "Ethnic and Cultural Diversity: Challenges and Opportunities for Health Law", European Journal of Health Law, 15 (2008) p285-295.
11 United Nations Committee on Economic, Social and Cultural Rights, General comment 14 (2000): The right to the highest attainable standard of health (article 12 of the International Covenant on Economic, Social and Cultural Rights), UN Doc E/C.12/2000/4, 11 August 2000.
12 T. Evans, "A human right to health?" Third World Quarterly, Vol. 23, No. 2 (2002), Global Health and Governance: HIV/AIDS (Apr 2002), p197-215.
13 International Covenant on Economic, Social and Cultural Rights: http://www2.ohchr.org/english/law/pdf/cescr.pdf
14 J. G. Bartlett, l. Madariaga-Vignudo, J.D. O'Neil, H.V. Kuhnlein, "Identifying indigenous peoples for health research in a global context: a review of perspectives and challenges", International journal of circumpolar health, Vol.66 (4) (2008) p287-307.
15 C.J. Freemantle, "Indicators of infant and childhood mortality for Indigenous and non-Indigenous infants and children born in Western Australia from 1980 to 1997 inclusive" [Doctor of Philosophy]. (Perth: University of Western Australia; 2003).
16 C.J. Freemantle, A.W. Read, N.H. de Klerk, D.McAullay, I.P. S.Anderson, F.J. Stanley, "Infant mortality among Australian Aboriginals", The Lancet 368, Issue 9539 (2006): p916-917.
17 B. Heffernan, S. Sheridan, J. Freemantle, An Overview of Statutory and Administrative Datasets: Describing the Health of Victoria's Aboriginal Infants, Children and Young People, (Melbourne: Onemda VicHealth Koori Health Unit, The University of Melbourne, 2009). http://www.vacms.net.au/files/
vacms/VACMS%20Report.pdf
18 Human Rights and Equal Opportunity Commission, Social Justice Report 2005.
19 I. Barnsley, "The Right to Health of Indigenous Peoples in the Industrialized World: A Research Agenda", Health and Human Rights, Vol. 9, No. 1 (2006), p43-54.
20 J. Smylie, D. Fell, A. Ohlsson, Joint Working Group on First Nations, Indian, Inuit, and Métis Infant Mortality of the Canadian Perinatal Surveillance System, "A Review of Aboriginal infant mortality rates in Canada-Striking and persistent Aboriginal/non-Aboriginal Inequities", Canadian Journal of Public Health (in press)
21 Australian Institute of Health and Welfare, Health and wellbeing of Indigenous children in A picture of Australia's children. (Canberra: Australian Institute of Health and Welfare, 2009). http://www.aihw.gov.au/publications/phe/phe-112-10704/phe-112-10704-c09.pdf
22 National Indigenous Health Equity Council, Data sources and data quality (Australian Government Department of Health and Aging). http://www.nihec.gov.au/internet/nihec/publishing.nsf/Content/datasource...
23 J. Smylie, S. Crengle, J. Freemantle, M. Taualii, "Indigenous Birth Outcomes In Australia, Canada, New Zealand and The United States-An Overview", Open Journal of Women's Health, (Accepted for publication May 2010).