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Section 4.2 - Writing a Holistic Monitoring Report

1. Getting Ready to Write the Report

Here are steps in preparing a report on ‘holistic’ monitoring:

  • Pull together the information from different monitoring focus areas (individual experiences, systemic, societal attitudes) to be integrated in the analysis
  • Review and discuss any challenges faced by the monitoring report teams that might affect the quality of the information collected.
  • Collect the contact numbers and e-mails of people who might be useful to the monitors preparing the final report

There are several steps in bringing the information from difference sources (persons with disabilities, laws/policies/programs and media) together into one report. The diagram below shows these steps.

Multi-step Approach to Holistic Reporting

  1. Identify the ‘hot issues’
  2. See how the ‘hot issues’ relate to the rights guarantees set out in human rights treaties
  3. Identify the questions about systemic issues and societal attitudes hidden or embedded in the individual stories
  4. Find the patters of the denial of rights
  5. Find the gaps in the protection and practice of disability rights

2. Holistic Reporting – Step-by-Step

Step 1 - Identify the ‘hot issues’ – that is, the issues from the individual experiences interviews that were the most important

Here are some examples of ‘hot issues’ raised by persons with disabilities who were interviewed in DRPI monitoring projects:

  • Not allowed to choose or access needed aids and devices
  • Denied education and subsequently a job because of limited education
  • Can’t move around because of lack of transportation
  • Lack of access to good health care or health care at all
  • Living in poverty
  • Unable to get things that brothers and sisters have

DRPI’s holistic approach makes the human rights situation experienced by persons with disabilities in their daily lives the starting point for analysis. The first step in the holistic process is to identify the ‘hot issues’. These issues come from the analysis of personal stories collected by individual experiences Monitors (see Module 2). They are the barriers that were talked about most often by those interviewed. They were identified as key reasons why people felt they were not experiencing their rights. A ‘hot issue’ usually covers a range of personal stories, not only one story. These stories tell us about ways that a ‘hot’ issue is experienced by people in their daily lives.

Here is an example of one woman’s story. This story would not be so very different from the many stories that would be collected in the individual experiences monitoring. You can see that even in a short segment like this many issues are raised.

This is my personal, life experience, as I am blind, and the blindness is actually the consequence of long term diabetes. Beside all these problems imposed by the blindness as such, it is also closely related to all complications and things connected with the same, basic disease - such as giving insulin, hypoglycemic comas, glycemic variations, and in fact everything that affects me to function normally in everyday life. I think that my life is to a great extent affected by my disease, and by the disease I mean diabetes - not the blindness. I will in particular highlight some basic things of which I am deprived of, first of all because I am a diabetic, and second because I am blind diabetic and that is that I have injured dignity, and that since I became blind, I am no longer welcome in the daily hospital for diabetics, where people without visual impairment go. Another thing is availability, possibility to be independent to control my basic disease, and that is the blood glucose meter with speech module, increased number of strips, needles and everything else, concerning that beside visual impairment there are other complications. Then, insensibility to provide an assistant, some kind of support, given that I live alone and that the worst period of my life is during the night, when I struggle for it and when the possibility to wake up is 50:50 %. When I don’t feel well, will I wake up or not? And all those small things, such as pen-injectors (applicators) which are not adapted in any segment for blind persons. Sometimes I stab myself and realize that I don’t have insulin in the pen-injectors anymore, so I have to start all over again, and those are just some small thing which I wouldn’t even mention if there were no other things previously mentioned. I will say in this context that I think that in this part of my life all mentioned segments are violated – dignity, independence, participation in life, and that I am discriminated against diabetics who don’t have such complications I am facing. Now I have been that no one wants to offer me a life insurance, no way. With regards to this, I will say that we rely too much on the law which provides the right for orthopedic and other aids, i.e. on the regulation which is based on the law, but which does not perform any categorization on the base of real and individual needs of every person. There is no such approach to get what you really need instead of what you don’t need. The regulation states that you have the right on that, so take it, because you are eligible, it doesn’t matter whether you actually need it or not, while the things you need more – things which will improve the quality of your life are not available for you. (Croatia)

Key issues covered by this story are the ability to access health services and the impact on personal safety and security. These issues become a ‘hot issue’ if they repeatedly come up within many people’s interviews. When this repetition or ‘hot’ issue is identified, it tells us that this is a prevalent area in which the rights of people are being denied.

Issues raised by this particular story with systemic implications are:

  1. A need for health services that are necessary for persons with disabilities because of their disability, including proper early detection and intervention, as well as services aimed at decreasing and preventing further disability, including disabilities of children and older persons.
  2. A need to provide these health services as near as possible to the communities where persons with disabilities live, including rural areas.
  3. A need to ensure that health care workers provide the same quality services for people with disabilities as for others based on free and informed consent.
  4. A need to ensure that people are not going to bed at night frightened that they won’t live until the morning because they don’t have medical care
  5. A need to raise awareness about human rights, dignity, independence and needs of persons with disabilities through training as well as through the promotion of ethical standards in public and private health sector.
  6. A need to prohibit discrimination against persons with disabilities in providing health and life insurance that will be enacted in a fair and reasonable manner.
  7. A need to prevent discriminatory denial of health care services on the basis of a particular disability or multiple disabilities.

For the rest of this module on creating a holistic report, we will use this one story as a ‘hot issue’. However, we would like to reiterate that, in reality, a ‘hot issue’ is made of several stories that bring together a range of perspectives and contexts as they come out of personal experiences.

Step 2 – See how the ‘hot issues’ relate to the rights guarantees set out in human rights treaties

Once the ‘hot issues’ are identified, the next step is to identify the rights provided in international human rights treaties that are connected to the ‘hot issue’ and understand what these rights provisions mean and what they include. The individual stories show us the broader denial of rights as well as the barriers faced by those who tell their stories.

The team compiling the report can start with the provisions in the UN but should also consider the relevant provisions in other international and regional human rights treaties that apply to persons with disabilities.

Note that Column 1 of the DRPI Law and Policy template includes references to the articles in the UN and other regional and international human rights conventions that relate to different subjects. This can assist monitors in identifying the relevant human rights guarantees].

This step makes it possible to link the personal experiences gathered through interviews with the information collected by systemic monitoring report teams. Using the DRPI Law and Policy template (see Module 3) as well as the review of media reports by societal attitudes monitoring report teams, a fuller picture emerges.

Using our example, monitors want to identify the provisions set out in the UN and other international human rights treaties that provide rights guarantees in relation to the ‘hot issues’ discussed in the story – namely the right to access health services as well as the right to safety and security.

UN - Article 25 - Health

Member States recognize the right of the persons with disabilities to exercise the highest standards of health without discrimination on the basis of disability. Member states shall also undertake all necessary measures in order to provide persons with disabilities access to the health services, which take into account their gender or rehabilitation. Member states will in particular ensure that people with disabilities have the same range, quality and standard of free services provided to all others, including those in the area of sexual and reproductive health and health programs covering the entire population.

International Covenant on Social, Economic and Cultural Rights (ICESCR) - Article 12

The enjoyment of the highest attainable standard of health. Right to health is the right to enjoy goods, services and conditions necessary for the realization of the highest attainable level of health

World Health Organization – definition of health

A state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity

UN Special Rapporteur on Health

The right not to be discriminated against generally includes protection against discrimination in health care and underlying determinants of health and includes special attention to Vulnerable Groups.

Convention on the Elimination of Discrimination Against Women (CEDAW)

Articles 12 and 24 have general recommendations on women and health.

Step 3 – Identify the questions about systemic issues and societal attitudes hidden or embedded in the individual stories

The next step is to decide what questions need to be answered so that we can identify whether the individual story reflects a broader pattern of discrimination including identified barriers as well as the denial of rights and services. This involves pulling together and analyzing the information collected in the different focus areas (individual experiences, systemic, societal attitudes).

First, decide on a broad, overall question that needs to be answered. Then, identify specific questions that can be answered in each of three types of monitoring focus areas.

Here is an example of an overall question and follow-up specific questions. These questions could be used to explore the issue of accessing appropriate medical care in a non-discriminatory environment that also ensures personal safety, security, dignity and choice.

  • Overall question: Do persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability?
  • Specific questions – Related to Monitoring Focus Areas

    • Individual Experiences

      • What did persons with disabilities say about their ability to access health services?
      • What situations do persons with disabilities face when they access health services that are normally available for the general population? What are their experiences when they look for services adapted to their disabilities?
    • Systemic

      • Are there laws, policies and programs that support the right of persons with disabilities to appropriate health services?
      • What perspectives do these laws, policies and programs suggest? Are there provisions that ensure access of persons with disabilities to health services available for the general population without discrimination?
    • Societal Attitudes

      • Does media reporting about disability and persons with disabilities address the right of persons with disabilities to access appropriate health services?
      • Does the media present stories about people with disabilities that makes it clear that access to disability-adapted health services is an entitlement?

Step 4 – Find the patterns of the denial of rights: Organize the monitoring information available around the ‘hot issues’

Once the monitoring questions are developed, the next step is to identify the information from the individual experiences interviews, DRPI Law and Policy Template, as well as media monitoring that relate to the ‘hot issues’. This requires coordination of the various pieces. It is useful, at this stage, to have regular communication between the monitoring report teams who have been involved in collecting and analyzing these different sources of information. The team compiling the holistic report should make sure that they:

  • Work with the ‘individual experiences’ monitoring report team to find the information from interviews that relates to ‘hot issues’ that have been identified.
  • Work with the ‘systemic’ and ‘societal attitudes’ monitoring report teams to find information from the DRPI Law and Policy Template as well as from the review of media reports that relates to the ‘hot issues’
  • Carefully save all of the information in a secure location. Be sure to create a backup copy of the information.
  • Review the challenges that were faced by the individual experiences, systemic and societal attitudes monitoring report teams that might affect the quality of the information collected.

In the example, monitors move on to identify information from the DRPI Law and Policy Template that address the ‘hot issue’ raised by the personal story we are using as an example.

Monitoring information related to the ‘hot issue’ access to health services and the implications for personal safety and security (from Croatia).

Constitution of Croatia, Article 14

Prohibits discrimination against persons with disabilities in all areas of social life. It proscribes: Everyone in the Republic of Croatia shall enjoy rights and freedoms, regardless of race, colour, gender, language, religion, political or other belief, national or social origin, property, birth, education, social status or other characteristics.

It is an open-ended non-discrimination clause. That means it covers a prohibition to discriminate on the ground of disability in all areas of social life although disability as a ground for discrimination is not expressly mentioned in the clause. According to Art. 57 (2) of the Constitution, the State shall devote special care to the protection of disabled persons and their integration into social life.

Croatia’s programmatic activities are guided by the Croatian Government National Strategic Development Framework 2006-2013.

The Croatian Law About Health

The Mandatory Health Insurance Act (Official Gazette No 85/06, 105/06, 118/06) provides persons with disabilities the same range, quality and standard of free health care. There are services designated and designed for persons with disabilities – such as a polyclinic for rehabilitation of hearing and speaking.

Step 5 – Find the gaps in the protection and practice of disability rights: Put together and analyze the monitoring information from the different focus areas

The last step is to put all the pieces of the puzzle together – that is, the team does an integrated analysis of the information.

Taking each ‘hot issue’ at a time, the team compiles the report looking at:

  • How persons with disabilities understand or frame the ‘hot issue’ when they talk about it in the individual experiences interviews – what does it mean to them?
  • What specific rights guarantees in international and regional human rights instruments are engaged by this ‘hot issue’?
  • How are the general human rights principles (dignity; autonomy; participation, inclusion & accessibility; non-discrimination & equality; respect for difference) respected or denied in the experiences related to these ‘hot issues’?
  • Are current laws, policies and programs in the country that are supposed to protect, promote and fulfill that right?
  • Do these laws, policies and programs work in practice?
  • Do the laws, policies and programs advance the human rights principles?
  • Do societal attitudes about the ‘hot issue’, as reflected in the media monitoring information, affect the enjoyment of this right by persons with disabilities?

Through this analysis, the Monitoring Report Team can identify both best practices and gaps in the way that people are exercising and enjoying their rights.

The example below looks at how monitoring information can identify and analyze ‘hot issues’ such as access to health care services. This specific monitoring information was collected in Croatia.

How are human rights principles reflected in personal stories?

In our example, the woman who tells her story links her experiences with the principles of autonomy, dignity, and participation and accessibility. Because of the lack of diabetes services adapted to her disability, she is unable to make choices to manage her disease and live a life she can control.

…Then, insensibility to provide an assistant, some kind of support, given that I live alone and that the worst period of my life is during the night, when I struggle for it and when the possibility to wake up is 50:50 %. When I don’t feel well, will I wake up or not? …I will say in this context that I think that in this part of my life all mentioned segments are violated – dignity, independence, participation in life, and that I am discriminated against by diabetics who don’t have such complications I am facing.

Are the human rights principles advanced in practice?

In practice, the programs designed to facilitate equal access to health care are not responsive to the needs of people with various types of disabilities. As a consequence, a lot of people depending on these services live in isolation and often have to depend on others.

Fitting the pieces together

This is a good example of how a ‘hot issue’ identifies that there are systemic issues hidden within the personal stories of the people interviewed through our individual experience monitoring. It is through their personal stories that we learn that there is something in the law, policy or practice that acts as a barrier to being able to exercise one’s rights. If we just heard the individual story, it is possible to think that it is an isolated example. If we only reviewed the laws, policies and programs, we might think that there was adequate opportunity to exercise rights. When we put the two together, it is evident that there are important barriers that must be addressed but cannot be tackled by an individual alone. That is the power of good monitoring and of writing a solid and valid holistic report.

What does the holistic monitoring report provide? – Filling the gaps

Comprehensive reporting on the human rights situation of people with disabilities makes an important contribution to understanding their lives and daily situations. It identifies gaps within promises made by governments, service providers and others as well as providing greater understanding of what life in everyday circumstances is like for people with disabilities. It identifies the difference between policy and practice, promise and reality. To get a clear understanding of where human rights are effective and practiced, monitoring needs to look at the holistic picture. The voice of people with disabilities is key to understanding the realization of rights.

The monitoring report gives voice to the way persons with disabilities live and the way in which they are able to enjoy their rights. It links rights that governments and policy makers say people have with the everyday experiences of persons with disabilities. It examines the impact that social attitudes, as reflected by the media, have on the exercise and realization of rights. It provides the information needed to start the conversation between government representatives and members of the disability community to develop laws, policies and programs that are responsive to the human rights violations faced by persons with disabilities.

Exercise

Assume the personal story below happened in your country. Use it to practice the holistic monitoring approach.

I would like to continue with my story and have to emphasize the issue of persons with multiple disabilities. I think that even the Convention does not pay enough attention to this issue, and the legislation in Serbia also has failed to adequately address the issue of people with multiple disabilities. Practical problems are really numerous, not only in health, but in education and everyday life as well. I for example have a problem of blindness and damage to a hand, and I am a diabetic for years as well. And then the problems multiply, since there is an issue how to solve them in practice. Here is an example: when I wanted to come to this seminar, there were couple of options – to go with different people, with assistants… but at the end I was almost forced to decide to go with my wife, because she is the only one who can give me the insulin. The assistant who helps me in Belgrade doesn’t know how to do that, he has not learned. For that reasons I have decided to go with my wife, although she has reduced immobility. When I find out three years ago that I have to receive insulin, I posed a question - can I, as a blind person and with the hand impairments learn to give myself insulin and measure blood glucose level? The aids intended for blind persons have not been helpful to me, so I had to rely on the others – spouse or other persons who are familiar with giving insulin or measuring blood glucose level. There was simply no way in my situation, or I could not find the way to solve the problem. I even posed a question, since I had to receive the insulin, whether to leave the job in the Organization of Blind, as that was a new situation and new problem. After some thinking, I have decided to stay and work, because my wife was giving me the insulin in the mornings and evenings, and personal assistants helped me in going to work and in resolving of other life important issues. What is also important, and what is connected with the personal assistance is that Serbia has recently adopted law on social protection where such service is foreseen; however it is necessary to adopt some by-laws to specify such service and such right. The problem is that it is not completely clear who and how will provide the funds for the organization and functioning of such service. It was also not regulated who will have the right to personal assistance, whether it should be provided only for people with physical disabilities, blind persons… and what will be the content of the service, what is happening with people with multiple disabilities and many other issues related to personal assistance which are not resolved. In practice, the state has provide very little personal assistance, there are some in Belgrade, and some are provided through projects by organizations of persons with disabilities, but those project last for short period of time – six months, nine months and after that the personal assistance is no longer available. Such kind of support for people with the most severe types of disabilities and combined disabilities is necessary, but in practice it has not been provided. Regardless of this law on social security and law on anti-discrimination, which recognizes the right for inclusion, I know that when we, in the Organization of Blind organize some event, for example literary evening, or have organized going to the theatre, I ask some why they didn’t appear, their answer is simple – I didn’t have personal assistant. The same goes for persons with physical disabilities.

The following issues from the story should be addressed:

  • Marriage privacy
  • Access to personal Assistance/devices
  • Inclusion

Here’s what you have covered in this module:

  • How to create a holistic report
  • How to identify the gaps between individual and systemic monitoring
  • How to write a holistic monitoring report
  • How to identify ‘hot issues’ and relate them to international rights treaties and legislation
  • How to create overall and specific lines of questioning to determine areas in which rights are being denied as well gaps in rights protection

After completing this module, you now have the tools to create a holistic report based upon what you’ve uncovered throughout the personal interviews you’ve conducted. Creating a solid and thorough report will be critical in addressing systemic barriers for people with disabilities and will help advance the realization of protected rights.

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