A monitoring mechanism for the implementation of any set of rules or prescriptions for change (such as those found in a human rights instrument) should be clearly distinguished from the components of the monitoring process. The mechanism may be voluntary or mandatory, it may use the services of a Special Rapporteur or rely on a committee of experts, its products may be reports that are critical of a countries efforts or, in the extreme, involve enforcement sanctions for failure to meet specific goals. Whatever the mechanism, however, there are five key elements of the process of monitoring: rights, goals, targets, indicators, and data sources [
9,
10].
Goals
From the monitoring perspective, however, what is important about rights – why they can serve as a moral compass – is that they determine policy goals. If, as sometimes happens, statements of human rights are so vague or abstract that they do not determine any goals (e.g. ’Everyone has the right to proper treatment by the state’ or ‘Everyone has the right to be treated correctly’), or do not clearly determine specific goals (e.g. ’People have the right to dignity’), then statements of rights are not operationalizable into goals and, political rhetoric aside, they are of little use to people. In a recent international human rights document, the rights are implicit and unstated, so that the document itself speaks entirely in terms of goals. The Millennium Development Goals (MDGs) are eight general, international, social objectives that respond to what has been agreed to be the world's primary development challenges, in light of the values and principles stated in the Millennium Declaration adopted in 2000 [
11]. To illustrate, the first goal of the MDGs (poverty eradication) is set out in Table
2.
Table 2
Goal 1 of the Millennium Development Goals
Goal 1: Eradicate extreme poverty and hunger
|
Target 1: Halve, between 1990 and 2015, the proportion of people whose income is less than one dollar a day | 1. Proportion of population below $1 (PPP) per day 2. Poverty gap ratio [incidence x depth of poverty] 3. Share of poorest quintile in national consumption |
Target 2: Halve, between 1990 and 2015, the proportion of people who suffer from hunger | 4.Prevalence of underweight children under five years of age 5.Proportion of population below minimum level of dietary energy consumption |
In the case of the CRPD, like the 1966 International Covenant on Economic, Social and Cultural Rights (ICESCR) [
12] before it, the CRPD goals and sub-goals often need to be drawn out of the wording of each Article. This inevitably leads to interpretative issues and the importance of being faithful to the text of the CRPD. The alternative of explicitly stating the goals of the CRPD -- as the MDG does -- would have, arguably, limited the impact of the CRPD.
Targets
Targets are qualitative or quantitative operationalizations of goals; they provide a concrete description of the content of the goal and specify details about the precise social commitment the goal creates. It is quite possible that a single goal generates several targets that may overlap in practice. But the essential feature of targets is that they specify the kind, degree or extent of achievement of a goal, which, optimally, is expressed quantitatively. Table
2, once again, shows the quantitatively-expressed and highly specific targets associated with MDG Goal 1: “Halve, between 1990 and 2015, the proportion of people whose income is less than one dollar a day“.
Targets are, after the rights themselves, the most important components of the monitoring process, and the most challenging to develop as they involve a delicate balance: targets must be both forward-looking and progressive, they must move us in the direction that the rights proclaim and the goals point us to. At the same time, they cannot be utopian or realistically unachievable. One tactic to secure this balance between progressive and realistic is to make targets time-limited (“Halve, between 1990 and 2015…“) in order to facilitate coordinated action and mobilize both political and economic resources, while at the same time keeping awareness of the issue prominently on the political agenda in order to create a sense of urgency. Targets, if well crafted, should walk a tightrope: challenging yet feasible, immediate yet not so demanding as to generate skepticism or fatalism in policy makers or advocates, and progressively idealistic without being utopian.
Targets may be absolute (e.g. the MDG target for material mortality ratio states: “Reduce by three-quarters, between 1990 and 2015, the maternal mortality ratio”), in which an explicit, measurable target is specified using a measurement metric that is scientifically acceptable and politically understandable. Targets may also be relative, in the sense that they set a target in terms of the level of progressive achievement of those countries which have achieved the most: “Achieve the maternal mortality ratio that is within the top 10 countries of the world.” Both kinds of targets have their virtues and problems. An absolute target is scientifically measurable; a relative target is too easy to politically manipulate. In the CRPD, no targets as such are given. It might not be inappropriate for the World Health Organization or some other United Nations agency, under the rubric of a monitoring exercise, to specify targets for its Member States; it is perfectly appropriate for it to specify its own targets for its own. Article 32 - International cooperation implies that the UN specialty agencies (WHO, ILO, and UNESCO) may be called upon to provide technical assistance in the development of the components of a monitor mechanism.
Indicators
These are variables, in the statistical sense, that can be used to identify or measure change over time (once again, Table
2 shows the indicators recommended for the MDG targets under Goal 1). For obvious reasons, it is best that these indicators be standardized and international [
13]. Indicators often follow nearly automatically from the wording of a target. For example, MDG Target 5 is: ”Reduce by two-thirds, between 1990 and 2015, the under-five mortality rate, the obvious indicator is under-five mortality rate” – obviously the indicator is mortality, measured by rate of incidence of death [
14]. The bulk of recent work on human rights indicators has been pursuant to ICESCR [
15], in which indicators are developed directly from the higher level goals. Although this procedure and the ICESCR generally are good models for the development of CRPD indicators, there is a danger in pursuing this tactic since, in effect, the indicator selected would imply that the hoped for outcome is not a single, explicit target but rather a range or spectrum of potential targets, which might diffuse the political will to achieve the result specified by the goal, or background right [
15].
Challenges of monitoring the CRPD
Despite its policy potential and the breadth of its coverage, the CRPD creates considerable challenges to the State, which is required by ratifying the convention to create an implementation monitoring mechanism. These challenges are both political and scientific. Even an enthusiastic political acceptance of rights and goals may not be easily translated into an equally enthusiastic acceptance of targets.
Compared to the political challenges, the scientific challenges may seem almost technical and unimportant, but that is far from being so, as the experience of the ICESCR has suggested [
16,
17]. This in turn requires a bridge to be built between the science of indicator development and data generation, and the values inherent in the goals and rights of the CRPD. At the end of the day, only those targets that can be politically endorsed will form part of a State’s monitoring mechanism. Given the substantial range of rights and underlying goals expressed or implied in the CRPD, it is a challenge merely to devise a collection of targets that span the full scope of the CRPD. Recalling the selection of substantive provisions set out in Table
1, targets need to be established for a range of policy areas. At the same time and in addition, each of these targets has to be feasible, yet progressive, achievable but not trivial, and finally, measurable. A daunting challenge indeed.
The potential role of ICF in convention monitoring
I would like to suggest that the ICF can play two very important ‘bridging’ roles in the monitoring process, one scientifically technical, the other more political but, from the standpoint of the future of the realization of rights for persons with disabilities, essential.
Technically, the ICF is the only world standard, proven to be valid and reliable, that is available for disability data collection and management. Indeed, the ICF offers a classification scheme based on a hierarchically arranged coding structure. In part as well, the ICF provides an informational model of functioning and disability (see Figure
1 above) that is true to the complex character of disability phenomena.
Prima facie, then, where monitoring requires data collection by means of a survey, questionnaire, administrative record or some other mechanism, ICF offers the prospect of coordinating internationally comparable disability data relevant to the CRPD monitoring process.
This remark is, of course, purely conceptual and there is much work ahead to ground this conjecture empirically. But the conjuncture is plausible. It is a relatively easy exercise to crosswalk the subject matter of the rights set out in the CRPD with ICF participation domains, at least at the Chapter level (see Table
3).
Table 3
CRPD rights and ICF categories compared
Article 19 Living independently and being included in the community | Chapter 5 Self-care Chapter 9 Community, social and civil life |
Article 20 Personal mobility | Chapter 4 Mobility |
Article 21 Freedom of expression and opinion, and access to information | Chapter 3 Communication |
Article 23 Respect for home and the family | Chapter 7 Interpersonal interactions and relationships: Particular interpersonal relationships |
Article 24 Education | Chapter 8 Major life areas: Education |
Article 25 Health | Chapter 6 Domestic life |
Article 26 Habilitation and rehabilitation | Chapter 6 Domestic life |
Article 27 Work and employment | Chapter 8 Major life areas: Work and employment |
Article 28 Adequate standard of living and social protection | Chapter 8 Major life areas: Economic life |
Article 29 Participation in political and public life | Chapter 9 Community, social and civil life |
Article 30 Participation in cultural life, recreation, leisure and sport | Chapter 9 Community, social and civil life |
But, more particularly, in many instances there are more granular links possible. As an example, consider the rights under Article 26 of CRPD with respect to the provision of habilitation and rehabilitation services.
Like many of the Articles in CRPD, Article 26 is structured in a way to highlight both the underlying rights (“…to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life”) and goals (“…shall organize, strengthen and extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services, in such a way that these services and programmes”) as well as sub-goals (“Begin at the earliest possible stage, and are based on the multidisciplinary assessment of individual needs and strengths”). Targets, however, for reasons already mentioned, are not provided.
Goals and specific targets relevant to these goals lend themselves naturally to a data collection instrument such as a questionnaire or household survey, in which respondents are asked, for example, "Do you receive the rehabilitation services you feel you require?". The data collected from this questionnaire would need to be compared and collated with other related data from a variety of sources, clinical and administrative records, population health surveys among others. To compare these data, however, it is essential that the relevant monitoring category (‘rehabilitation services’ in this instance) be related across data sources. And this is precisely what ICF provides the basic mechanism for doing so in its classifications and coding system (in this instance, the relevant ICF code is e5800).
This application of the ICF is more significant than it might at first appear. Unless it is possible to compare data across data collection instruments and modalities, it will not be possible to construct a summary measure relevant to the target, whether absolute or relative, associated with these CRPD rights. More importantly for the CRPD monitoring exercise, without data comparability, the summary measures generated by different countries would not themselves be comparable, and no sensible judgment about the extent or degree of relative implementation of Article 26 could be made. Thus, in this simple way, the ICF deals with one of the most significant scientific challenges to an evidence-based monitoring process – whatever mechanism chosen.
The broader application of the ICF would need to involve the full range of targets, indicators and data sources. As a trial run and proof of concept, consider the matrix in Table
4. In this example, the targets have been invented for illustration; in the actual case they would be the result of a political debate at the national level. The indicators here are also suggestions for illustration. That said, it is fairly clear what the minimal role of the ICF could be in this process: that of bridging in operational terms the indicators and the existing data sources available at the country level. In this manner, it would be possible to determine not only how best to use existing data, but also where data gaps relevant to the selected indicators exist. These gaps would be expressed as ICF categories of disability for which no appropriate national level data exists. Were the whole process to be implemented – and all of the cells in the matrix filled – then not only it would get the country be able to quantitatively assess its level and rate of implementation over time, but, at any particular time, it would be able to compare its progress with other countries which operated in terms of the same matrix, irrespective of the targets they select (as long as these targets are themselves comparable).
Table 4
A CRPD monitoring matrix
Article 26 Habilitation and rehabilitation | | | | |
1. States Parties shall take effective and appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life. To that end, States Parties shall organize, strengthen and extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services, in such a way that these services and programmes. | Provide comprehensive habilitation and rehabilitation services and programmes (health, employment, education and social services), to persons with disabilities that is: • based on standards of multidisciplinary assessment of individual needs and strengths • based on standards of participation and community inclusion • voluntary • available and community-based | Proportion of persons with disability in need of rehabilitation services, who are receiving them. | ↔ |
Household and facility surveys
|
| | Proportion of population of persons with disability in rural areas receiving necessary rehabilitation services. | ↔ |
Administrative records
|