Highlighted Selections from:

Old Age, Disability and Mental Health: Data Issues for a Post- 2015 Framework

Rodriguez-Takeuchi, Laura K. and Emma Samman. “Old Age, Disability and Mental Health: Data Issues for a Post- 2015 Framework.” Overseas Development Institute (2013): 1–10. Print.

p.1: This Background Note focuses on inequalities associated with old age, disability and mental health. It argues that these should be considered salient sources of group-based difference, given the numbers of people affected, their marginalisation and vulnerability, and their relative neglect in international agreements to date. -- Highlighted apr 5, 2014

p.1: To this end, the paper discusses the available data and their limitations, constraints to better data collection and efforts needed to adjust key international survey instruments -- Highlighted apr 5, 2014

p.1: But they also have close links to vulnerability and a lack of fulfilment of human rights. The discrimination experienced by those who fall into any one of these three groups is important to address in itself and is likely to have constrained progress towards certain MDGs. -- Highlighted apr 5, 2014

p.2: One clear obstacle is the widespread lack of nationally-representative and internationally-comparable data – a challenge arising from definitional or technical issues (what to measure and/or how), operational issues (e.g., resource or capacity constraints), attitudinal issues (relating to stigma) and/or lack of demand from data users. -- Highlighted apr 5, 2014

p.2: The marginalisation of older people and those with disabilities or mental health issues is fuelled by prevailing attitudes, stigma, environmental barriers, difficulties in accessing social services, and lack of voice and participation, all of which combine to render these groups ‘invisible’ (Cain, 2012). They are disadvantaged in many contexts, particularly where relevant policies and safety nets are absent, and their disadvantages tend to overlap in distinct ways, as well as with more often-studied sources of inequality such as gender and place of residence. -- Highlighted apr 5, 2014

p.2: People aged 60 years and above – the international definition of older people used by the UN (UNDESA, 2004) – account for 11% of the global population. This share is expected to double to 22%, or 2 billion people, by 2050 (UNDESA statistics, cited in UNFPA and HelpAge International, 2012). -- Highlighted apr 5, 2014

p.2: And in many countries where children have been orphaned by HIV and AIDS or conflict, or where parents have migrated, older people are taking on a heavy burden of caring for children (Kakwani and Subbarao, 2005). As with other forms of the ‘care economy’, this is not monitored (let alone rewarded) systematically. -- Highlighted apr 5, 2014

p.2: No international convention exists as yet on the rights of older peoples although there are growing calls for such a convention, given the extent and prevalence of age discrimination and a recognised gap in protection. The 2002 Madrid International Plan on Ageing was the first to make explicit connections between ageing, development aims and human rights. It remains the only global agreement that commits governments to integrate issues related to ageing into economic and social development policies and into meeting the MDGs. However, the MDGs ‘completely ignore the ageing of societies and poverty in old age’ (UNFPA and HelpAge International, 2012). -- Highlighted apr 5, 2014

p.2-3: On balance, disability is linked to a higher probability of being poor (Groce et al., 2011). In many settings, people with a disability are less likely to obtain an education – a result of constraints to access, as well as stigma and a lack of support – and face reduced employment opportunities and earnings. Other household members may have to give up their jobs to care for them. Typically, people with disabilities have higher health-care costs, and may also face social and political marginalisation (Groce et al., 2011). -- Highlighted apr 5, 2014

p.3: An analysis of 15 developing countries found that, in the majority, ‘people with disabilities, on average, experience multiple deprivations at higher rates and in higher breadth, depth and severity than people without disabilities’ (Mitra et al., 2013). -- Highlighted apr 5, 2014

p.3: In India, children with disabilities were over five times more likely to be out of school, while employment rates for people with disabilities were some 60% lower, on average (World Bank, 2007). -- Highlighted apr 5, 2014

p.3: At a national level, the relationship between disability and poverty varies greatly according to the availability of health care, nutrition programmes, disability benefits and accessible schooling, highlighting the importance of policy (Mitra et al., 2013). -- Highlighted apr 5, 2014

p.3: Mental health disorders account for 13% of the world’s Global Burden of Disease (WHO, 2008), affecting some 450 million people, or more than six in every 100 people. -- Highlighted apr 5, 2014

p.3: Mental health ‘remains a largely ignored issue in global health, and its complete absence from the MDGs reinforces the position that mental health has little role to play in major development-related health agendas’ (Miranda and Patel, 2005). -- Highlighted apr 5, 2014

p.3: Resources are part of the problem: one-third of the world’s countries do not have any health-budget allocation at all for mental health, while in onefifth of the countries that do, the allocation is less than 1% of the total health budget (Mental Health and Poverty Project, 2010). -- Highlighted apr 5, 2014

p.3: The extent to which these and other sources of inequality overlap and reinforce one another may heighten exclusion and disadvantage. -- Highlighted apr 5, 2014

p.4: A lack of data and monitoring mechanisms means that the situation of older people, people with disabilities and those with mental health issues is often invisible, making it more difficult to document and dismantle entrenched patterns of discrimination. -- Highlighted apr 5, 2014

p.4: The first gap concerns coverage. Here, two adjustments to sampling would increase the ability to obtain a representative picture of society. The first is to extend survey coverage to individuals who do not live in traditional household units. Typical household surveys exclude people living on the streets, in residential-care facilities, long-stay hospitals or orphanages, etc. Extending coverage would provide a more accurate picture of how societies are faring, and is particularly important for our three groups, who are more likely than other groups to be living in institutions, and, in the case of those with disabilities and mental health issues, on the streets. -- Highlighted apr 5, 2014

p.5: Asking for the data directly of the household member concerned (rather than asking a household head or other nominated person to answer on his or her behalf) tends to yield more accurate data. A recent experiment compared answers to household-survey questions on employment obtained from proxy reporting and self-reporting (Bardasi et al., 2010). Response by proxy yielded lower male labour-force participation, lower female working hours and lower employment in agriculture for men – and the evidence suggested information imperfections within the household, especially in relation to a distance in age between respondent and subject. -- Highlighted apr 5, 2014

p.5: Finally, household surveys should address issues that may affect particular groups such as older people (and women) in particular, such as the care economy and domestic violence. Collecting data on care-taking requires time-use surveys that are time-consuming and that require painstaking effort. Questions on domestic violence are not always addressed to women over 50 years old, despite evidence that the problem may be sizeable not only among young women, but also among other groups in the population. -- Highlighted apr 5, 2014

p.5: Inquiring about domestic violence through specially-designed questions is recommended, though these are sensitive issues to raise and require careful enumerator training. But there is little justification for asking such questions only of women in a certain age range. -- Highlighted apr 5, 2014

p.5: The final gap concerns the identification of people who are older, who have disabilities and who have mental health issues. To highlight the circumstances of particular and smaller numbers of people, such as those of advanced old age among older people, it may be necessary to over-sample particular groups to obtain representative data. But a key issue is to ask questions that identify people accurately, particularly those who have a disability or mental health issue. Earlier work on disability and mental health (as well as on older age) has highlighted physical limitations, while more recent models emphasise how physical conditions interact with societal structures to enable or hamper activities, participation and exclusion. -- Highlighted apr 5, 2014

p.5: Such questions are problematic because they rely on perceptions of what constitutes ‘disabling’, which may differ across individuals, and are rooted in a physical model of disability. Such questions yield underestimates of prevalence, particularly where access to health services is low, or where stigma toward disability conditions responses, and are likely to identify only those people with more severe disabilities (Mont, 2007). -- Highlighted apr 5, 2014

p.6: The United Nation’s Washington Group on Statistics (WG) has marked a major step forward in recommending a simple set of internationally-comparable questions to establish the prevalence and severity of disability (Box 1). These focus on the constraints that a person’s physical condition has upon his or her ability to undertake a range of basic activities that are necessary to function in society – namely seeing, hearing, mobility, cognition, self-care, and communication. -- Highlighted apr 5, 2014

p.6: Mental health issues have received short shrift in international survey instruments to date. The DHS core questionnaire does not address mental health at all. Countries are free to omit or add questions on specific topics as deemed necessary, but only the 2002 Uzbekistan survey included a module on mental health using screening questions. Similarly, no MICS addresses mental health issues. Customised for each country, of a total of 96 LSMSs conducted to date, only 17 surveys in seven countries – Albania, Bosnia Herzegovina, India, Jamaica, Kyrgyzstan, Nicaragua and Romania – contain relevant questions. -- Highlighted apr 5, 2014

p.7: Information on mental health is not only important in itself, but would add insights to the information already covered in household surveys. For instance, in LSMS, it would enable identification of those characteristics associated with people who have mental health issues, to see the effects on multiple dimensions of their well-being and to obtain information about their access to treatment. Though the CWIQ is likely too short to identify specific mental health issues, obtaining general information on the presence of a mental health issue would show inequalities faced by these people in access to treatment and other public services. In the DHS, questions on conditions relating to reproductive health, such as sexual dysfunction and postpartum depression, could be particularly apt. And the early onset of many mental health issues (Kessler et al., 2007) suggests that MICS could be a valuable instrument to collect information on risk factors in childhood and adolescence. -- Highlighted apr 5, 2014

p.7: The previous section outlined definitional and technical issues involved in eliciting information on old age, disability and mental health issues in standard internationally-comparable household surveys. However, more inclusive data collection may also require greater resources and/or capacity, as well as political will and efforts to overcome the attitudinal or cultural constraints that preclude households and communities from revealing the existence of, and circumstances facing, people with disabilities or mental health issues. -- Highlighted apr 5, 2014

p.7-8: People in these three groups are often marginalised in political terms. For example, some people with mental health issues are denied the right to vote – the Thai Constitution denies the vote to anyone ‘being of unsound mind or mental infirmity’ (WHO 2009) and a majority of EU states deny the vote to those under guardianship (European Union Agency for Fundamental Rights, 2010). They may also be excluded from family decisions. People with disabilities and older people too may face challenges to full participation. It follows that elected representatives may not heed the needs and preferences of these groups, particularly in the light of a lack of data on their use of public services. The scant attention paid to these issues is evident in relatively small budget allocations in many countries. -- Highlighted apr 5, 2014

p.8: The stigma that surrounds physical or mental health issues impedes the advancement of basic rights and has been identified as a barrier to revealing and seeking treatment for mental health issues in particular (Kessler, 2000) -- Highlighted apr 5, 2014

p.8: A two track approach is proposed. The first track would seek to ‘mainstream’ disability and older age by including these categories as ‘crosscutting’ issues associated with disadvantage, in much the same way as gender has been included in the MDGs. -- Highlighted apr 5, 2014

p.8: A second, complementary, approach would seek to establish particular targets related to these issues. Here numerous possibilities have been proposed.

  • Disability could be included explicitly in targets on employment, education and health.
  • A goal devoted to mental health treatment and awareness-raising could benefit several hundred million people.
  • Age-inclusive goals could include an increase in healthy life-expectancy at birth.
  • Goals aiming at health and income security by extending social protection floors would benefit all people affected by economic aspects of inequality.

-- Highlighted apr 5, 2014