Community Centered Health Systems for improved governance and accountability in Health: An Analysis of the COPASAH Symposium- Denis Bukenya (PHM Uganda)

Community Centered Health Systems for improved governance and accountability in Health: An Analysis of the COPASAH Symposium

Denis Bukenya (People’s Health Movement Uganda/HURIC)

The title to the COPASAH Symposium alone set the pace to this Analysis, “Leaving no one behind: Strengthening Community Centred Health Systems for Achieving Sustainable Development Goals”. This title in my mind alludes to a commitment to serve people and humanity through a more democratic approach that allows them to be involved in their own health challenge solving and development. It is important to note that many marginalized people’s lives in the community are in jeopardy the world over hence the need for community ethos and creation of a conversation between grassroots practitioners, policy advocates, research and academia, policy makers and the implementer. The symposium encased a motley of approaches from the grassroots, practitioners, researchers and academia, policy makers and implementers from all over world, uniquely modeled to gainfully engage members of community and their leaders to improve governance and encourage community accountability.

While COPASAH has been run since 2011, this was my first time to attend the event. The practitioners use social accountability approaches to strengthen the linkage between communities and the health systems to provide quality and accountable care. The symposium revolved around five themes emanating from a specific theme anchor of Leaving No One Behind: Strengthening Community Centered Health Systems for Achieving Sustainable Development Goals. This year, the symposium was organized at the India Habitat Center, New Delhi-India. Approximately 500 people were in attendance from diverse political, social and cultural contexts including COPASAH members from Latin America, Southern Central Europe, Sub Saharan Africa, Eastern and Southern Asia along with researchers, donors and policy makers in the field of public health governance.

The five major areas considered included: Community Action; Indigenous and Marginalized Peoples; Sexual & Reproductive Health and Rights; the Private Sector in Health and Health Workers. Alongside plenaries and parallel sessions, the Symposium comprised workshops, dramas, cultural events and film screenings, and a poster exhibition. Dedicated sessions for regional consultations allowed time for in-depth consideration of the draft COPASAH Charter and Call to Action, as well as other geographic-based discussions. Most importantly, the vast majority of participants hailed from the Global South. I should say that the Arab region, North Africa, and the Pakistan perspectives were greatly missed.

Although in this case the outcomes were fairly benign, the structure and content of the Symposium and the discussions were fascinating. Owing from my point of view, combined with my experiences at such Global Health fora, below I outline what I have learned about citizenship, governance and accountability in health considering strengthened community centered health systems.

The need to continuously empower Civil Society as a feat for citizens’ voices

The narrative showed that Development cooperation has been highly characterized and the Civil Society Oorganizations (CSO) are being steered towards certain actions over others depending on the funding curve of the donor. Multinational corporations have tuned development corporation into a weapon to disguise profit in the health sector. So many examples were sited, notably was the issue of medical tourism in India where the doctors will treat all cost regardless of the survival rate of the patients.

Evidence interrogated at the symposium showed that due to these deliberate efforts through aid and other Civil Society Organization partnerships, the focus has turned to treatment rather than prevention. Simply because the multinational corporations will then line their pockets for trade and profits. Truly so, development corporation focusing on prevention is steadily dwindling. The broader challenges that I hailed the symposium for exposing in the SDG era were the numerous partnerships that have widely opened the floodgates to the private sector which stands for profits at the expense of ill health.

Clearly the practitioners in a bid to fast track strategy shared how they have countered this challenge in their various jurisdictions. The most memorable approach was to form coalitions and muster collective responsibility embanked with numerous community voices to their leaders in demand for sanity. I also got to learn that visual art is a tool of advocacy that appeals most to the youth and the young.

 The conflation between treatment and prevention is problematic

Within the Global Health agenda, Universal Health Coverage (UHC) issues are being framed in terms of treatment solutions. Solutions that, for example, propose public private partnerships to accelerate access to pharmaceutical products. Jane Nalunga, the Country Director of SEATINI/Uganda described how reallocation of power in decision-making, funding and provision of health services from the state to private sector actors and donors continues the exclusion of communities from information, decisions and feedback regarding their health care. More evidently so, the UN General Assembly high level meeting, 2019, prevention was hardly mentioned but the justification of the need for private partners. Chris Owalla the Executive Director of Community Initiative Action Group Kenya (CIAGK) based in Kisumu, Kenya at one of the sessions questioned the narrative as to whether we are still in focus of the debate to help a people at the grass-root when we keep discussing how to make a UHC funded by private public partnerships. We ought to have taken more time questioning this assumption. However, the discussions soon turned to circular debates over engaging with “health harming” industries such as food and alcohol. This illustrates the situation at COPASAH, where civil society (the People’s Health Movement and a few other NGOs) felt they had to interrupt the plenary to have their voices heard, to help support the brilliant panelists points. My analysis is that civil society are in “an abusive relationship with industry”, Global Health is an uncomfortable third wheel in this long-term relationship between Public Health and trans-national corporations.

The commercial determinants of health are at the top of everyone’s intellectual agenda – but action is not being funded

The most energized and well attended session at COPASAH was the excellent People’s Health Movement-led session on the commercial determinants of health and political economy of health. Although the atmosphere was one of activism the audience contained a range of delegates, including those from the global governance of health list like the WHO. The discussions did not progress and likely only served to re-enforce pre-existing assumptions on both sides. While the importance of tackling the commercial determinants of health at the community level is widely agreed, as mentioned above this is not reflected in funding flows. This highlights the challenges for Global Health actors to implement research and projects that may displease their donors; donors who are beholden to private capital flows that may well be invested in the products that public health evidence now shows to be so harmful. In other words the political economy of Global Health in action. To my disappointment, the debate turned political and I really felt like my fellow community activists were denied the opportunity to process the information to make it actionable. It is at that point that I made the suggestion as a way forward that there is a need for PHM to continue simplifying the messages in their policy briefs and share the information widely on the pros and cons of the financial determinants of health and the political economy of health making it more actionable for grass-root consumption.

 Global Health and the Neoliberal Global Political Economy

The governance and accountability in health is dominated by the ideology of neo-liberalism, which places the individual and free-market at the centre. It is important to view global health as part of a system that has increased inequality and inequity and strangely so it seems a fantasy to expect the opposite. The appropriation by many actors in the global health economy has distracted the understanding of the political economy within Global Health. There is a fear that by holding a symposium on governance and accountability in health, and self-congratulate ourselves on seeking to address the issues of governance and accountability hence the inequality, a box is ticked and it is business as usual. We need more governance and accountability analysis of Health systems and the community institutions. But who will fund it? Who will publish it?

The aim of COPASAH was to: “identify major bottlenecks, root causes and propose solutions from the grass-roots to the national and global level to accelerate implementation of proper health systems governance and accountability in health. Whilst the foreseeable objectives were fulfilled, it begs the question as why solutions to the root causes were not forthcoming. Further questions coming to mind were: should the symposium have further considered an elite UN dominated Global Health symposium to better interrogate the governance and accountability in health? I am not so sure.

Moving Forward

To conclude, here is my observation and personal analysis to those who attended the symposium and would love to see change in the current status quo in Global Health.

1) The demand for access to information at the grass-roots needs to be demanded even at Global level. We need to interrupt proceeding to refrain from using words like business as usual. We need to demand that Aid through our global leaders is relaxed to serve at the grass-roots. The negotiations should be made public notice for communities to have meaning-full participation: It is important that communities demand collectively for protection from pandemics by the global health leaders, to fight infectious diseases, to find the cure for cancer if possible, an support nations as they work out a formula towards a Universal Health Coverage dully financed by national taxes and also be open to sharing the data generated.

2) There is an ardent need to continuously critique and work with the UN systems at all levels so that its engagement with the member states can periodically get reviewed on their safe-guarding norms and aspiring to global goals with evidence from the communities.

3) In the meantime, let’s use the data Global Health generates more smartly – to show what is not happening as well as what is. And to use more political economy analysis to help show why.

4) Let’s dump down the messages around strengthening community centered health systems, so that members of the public all over the world can understand the issues and causes of injustice. Let’s tell the stories behind numbers in ways that people can understand, communicated in forms they can utilize (clue: not case studies!).

5) Finally, and most importantly, let’s be inspired by people like the volunteers at the COPASAH secretariat in India to be champions, to not give up on what we believe in (for me, social equality, equity and social justice). But let’s also be realistic: Global Health is great for measuring things and improving health security; it is not necessarily the right place for people who want to tackle injustice, and change the world in the many ways it so urgently needs changing.

Denis Bukenya – PHM-Uganda, Human Rights Research Documentation Centre (HURIC),Uganda

COPASAH Global Symposium 2019 on Citizenship Governance Accountability in Health

Leaving No One Behind: Strengthening Community Centred Health Systems for Achieving Sustainable Development Goals

15-18 October, 2019 – India Habitat Centre, New-Delhi, India

Community of Practitioners on Accountability and Social Action in Health (COPASAH) www.copasah.net in collaboration with its alliances for social accountability and human rights for the health, well- being and dignity of the marginalised is organizing a COPASAH Global Symposium (CoPGS) 2019 on Citizenship, Governance and Accountability in Health from October 15-18, 2019 in New-Delhi, India.  COPASAH is a global community of practitioners who came together in 2011 to learn and share from each other on community led practices around accountability and health governance. In the last few years Accountability and Governance is being increasingly seen as essential to the fulfillment of the Universal Health Care and Sustainable Development Goal agenda. Members of COPASAH are among the leading practitioners of social accountability and community action in the field of Health and as a group have contributed significantly to the emerging discussions on community-centred and citizen-led processes in the field of health. The COPGS 2019 aims to

The theme of the COPGS 2019 is Leaving No One Behind: Strengthening Community Centred Health Systems for Achieving Sustainable Development Goals. It aims to strengthen the solidarity within the community of practitioners, facilitate conversations between practitioners and other key actors like researchers and development agencies and overall stimulate learning which is driven from practice in the field. It will bring together 500 practitioners from diverse social – cultural contexts including COPASAH members from Latin America, Eastern Europe, Sub Saharan African, Eastern and Southern Asia.

The co-organisers  for the Symposium are  People’s Health Movement, Azim Premji University – Bengaluru (India), Accountability Research Centre – American University – Washington DC (USA), Institute of Development Studies – Sussex (UK), Global Health Justice and Governance Programme – Mailman School of Public Health, Columbia University New York (USA).

Through the global symposium, COPASAH will deliberate on a set of broad sub-themes which include:

• Community action in governance and accountability for health systems strengthening: Through the themes the Symposium attempts to position communities and civil society at large as central to the governance and accountability of health systems (both public and private). It emphasises on community empowerment and transformation of the iniquitous power relations between the community and health systems.
• Improving access to quality health services for the indigenous, excluded, vulnerable communities and those in fragile contexts: Several indigenous, vulnerable and marginalised communities, and those in fragile contexts such as those affected by conflict, displacement or natural disasters face exclusion and discrimination from the policies, programme and health care services. The modalities of exclusion, non-inclusiveness and discrimination are reflected in the health care programmes and policies that are designed and the kind of health care that is made available.
• Moving forward the agenda for Sexual and Reproductive Health Rights: Sexual and Reproductive health rights are indivisible aspects of human rights, and deeply linked with the fulfilment of all other civil, political, economic, and social rights. Social action for accountability towards sexual and reproductive health rights is gaining momentum; however, it continues to be challenged by marginalisation and repercussions on the basis of gender, caste, disability, and sexuality.
• Setting the framework and agenda for people centred accountability of private and corporate health care sectors: In an environment where private providers are largely unregulated, and hence are unaccountable either to the citizens or to the government, the accountability deficit continues to deepen, creating significant challenges for patient’s access to quality and affordable care, and preventing redressal of grievances from such powerful institutions. There is a growing demand for ensuring social accountability of the private health care sector, and developing accountable regulatory frameworks to achieve this.
• Forging alliances between the community and the health care workers: Frontline health care workers – traditional birth attendants, community health workers (CHW), nurses and midwives the foundational building blocks of the health care systems. More often than not, communities and health care workers are made to relate to each other in hostility and antagonism, instead of solidarity, and such fragmentation cumulatively affects the rights of both the communities and health care workers.

The call for participation cum scholarship for the COPASAH Global Symposium is open till February 15, 2019- 5.00pm IST. The application for participation cum scholarship form is available in five different languages including English, Hindi, French, Spanish and Romani.  For more details and updates on the COPASAH Global Symposium 2019 please visit the Symposium website http://www.copasahglobalsymposium2019.net/index.html

Queries regarding the Symposium can be sent to copasahsymposium2019@gmail.com

Re-thinking Social Accountability through a Power Discourse

Following the path of a good learning organisation, COPASAH undertook a year long journey of reflection on its relevance to the field of accountability and evaluating its own strategic directions and pathways. The process which began in 2016 with the community feedback and strategic directions meeting in Vancouver (November 2017), continued with an external evaluation and a debriefing meeting in Delhi (September 2017). The current issue of COPASAH Communiqué provides the glimpses of this collective introspection, reflection and insights for the future directions.

Such a reflection will be followed up by marshalling the energies to consolidate the central theme of COPASAH, i.e. community centred participatory accountability processes and bottom up knowledge making, through the Global Symposium on social accountability, that will be hosted by COPASAH in February 2019, in New Delhi (India). It will be a unique o p p o r t u n i t y f o r t h e practitioners of social accountability across the global south and supporters of such apraxis from other fields such as academia and research, donor community, global policy bodies and institutions, and human rights based civil society organisations.

The Millennium Development Goals (MDGs) followed by Sustainable Development Goals (SDGs) have rallied the Governments around the world and the civil society to think together and setting collective goals. However, achieving such goals would be highly i m p r o b a b l e , w i t h o u t accountability to such goals and participation of the community. COPASAH firmly believes and would like to reiterate, social accountability is not a ritual or a master-piece that elites and intellectuals can showcase, but is a process of empowerment and reconfiguring power-relations of the community with the structures of power at various levels. We would like to reach out to all friends and associates to be part of the upcoming global symposium to refine and reiterate such a power discourse in social accountability.

ABOUT THE AUTHOR

E. PREMDAS PINTO is the Global Secretariat Coordinator for COPASAH. As an Advocacy and Research Director at Centre for Health and Social Justice (CHSJ), India, he facilitates the thematic area of social accountability with a special focus on processes of community monitoring and accountability in health. He also coordinates the South Asia region for COPASAH. He is a Human Rights advocate and Public Health practitioner- scholar, actively engaged in processes and social justice issues of the the communities of Dalit Women, rural unorganized labourers and other disadvantaged communities for the last 22 years. To know more about the work of CHSJ and COPASAH please visit, http://www.chsj.org and http://www.copasah.net

Social Accountability: A Process Oriented Community Practice

THE accountability discourse is gaining momentum globally. However, the dominant discourse of accountability continues to be instrumentalist in its approach, which sees it as a technical report at the worst or merely as an intervention to improve health sector performance, at best. It is also tagged to efficiency, defined as value for money or getting things done at very low financial inputs. To this end, goals without fundamentally touching the core of accountability are set. The language that couches these goals is largely apolitical in its expression. The goals set in this school of thought range from producing a report or a score card to setting the millennium development (MDG) or sustainable development goals (SDG).

When the time-period set is complete, as it happened in the MDGs, question was not asked as to why these goals were not met or what the processes that achieved some of the goals are. It simply, moved to setting another set of goals, i.e. SDGs. Even at a micro level, CSOs which implement projects on community participation tend to follow such trends by developing score cards or technical reports, over and over again.

However, at the core of accountability practice the thrust is on questioning of inequity, inequitable distribution of resources and the skewed power relations which keep citizens or communities perpetually in a state of frustration. It also aims at changing the iniquitous power relations of the health system with the communities. COPASAH has foregrounded the community centred accountability practice which is process oriented that aims to change the power asymmetry of the community with the health care system. Such processes are aimed at advancing human rights of the marginalized with a broader
framework of realizing equity and social justice.

This COPASAH Communiqué highlights the process oriented community practice of social accountability. For practitioners of accountability, as highlighted in these stories of practice, accountability is not a finished product. It is a continuous iterative process of engagement, mobilization, strengthening community’s power and their ability to question and change things with multiple contextualized methods and tools, as well generating voice and participation.

 

ABOUT THE AUTHOR

E. PREMDAS PINTO is the Global Secretariat Coordinator for COPASAH. As an Advocacy and Research Director at Centre for Health and Social Justice (CHSJ), India, he facilitates the thematic area of social accountability with a special focus on processes of community monitoring and accountability in health. He also coordinates the South Asia region for COPASAH. He is a Human Rights advocate and Public Health practitioner- scholar, actively engaged in processes and social justice issues of the the communities of Dalit Women, rural unorganized labourers and other disadvantaged communities for the last 22 years. To know more about the work of CHSJ and COPASAH please visit, http://www.chsj.org and http://www.copasah.net

ICT FOR SOCIAL ACCOUNTABILITY-COPASAH

COPASAH SOUTH ASIA EXCHANGE AND STRENGTHENING MEET ON SOCIAL ACCOUNTABILITY IN HEALTH IN THE SOUTH ASIA REGION DECEMBER 4-6, 2016; KATHMANDU, NEPAL

INTRODUCTION

COPASAH – Community of Practitioners on Accountability and Social Action in Health – is a global community of practitioners who share a people –centric vision and human rights based approach to health, health care and human dignity ( http://www.copasah.net). COPASAH’S mission is to nurture, strengthen and promote collective knowledge, skills and capacity of communityoriented organisations and health activists primarily in the regional nodes of South Asia, Latin America, East Southern Africa and Central Europe working in the field of accountability and social action in health, for promoting active citizenship to make health systems responsive, equitable and people-centred.

CONTEXT FOR THE MEET AND STRENGTHENING SOCIAL ACCOUNTABILITY IN
SOUTH ASIA

In the COPASAH South Asia regional node of practice, synergy has been enhanced through
different interactions in form of workshops, Facilitated learning exchange visits and through virtual communication on the communication platforms and the COPASAH Communiqué (newsletter).At country level this has deepened but there are very few opportunities for collective deliberations on the social accountability in the region in form of face to face meetings. With a view to understanding various approaches and experiences from a range of health rights organizations and health rights activists in different countries of South Asia (India, Pakistan, Nepal and Bangladesh), COPASAH South Asia envisaged a platform for discussion to contribute to strengthening the field of accountability in health in South Asia and to deepen and expand the regional base further of COPASAH through medium of a COPASAH South Asia strengthening meeting. The objectives of the meet were:

OBJECTIVES:

• To understand the eco-system of social accountability in health in the South Asian
  Countries
• To facilitate mutual sharing of experiences and learning from each other
• To strengthen South Asian solidarity to promote people oriented social accountability
  perspectives and perspectives.
• Explore opportunities for knowledge production from accountability practice in the
  region and its exchange in form of webinars, case studies and other mediums

SESSIONS OF THE MEET

COPASAH South Asia Exchange and Strengthening Meet, was convened in Kathmandu, Nepal from Dec 4 to 6, 2016 on a very participatory note. The meet saw significant participation from countries of Srilanka, Bangladesh, Pakistan and Nepal. The meet was facilitated by COPASAH Steering Committee (SC) member Renu Khanna, with co facilitation support from COPASAH South Asia SC member Gulbaz Ali Khan.

DECEMBER 5, 2016 SESSIONS

SESSION I: MUTUAL INTRODUCTIONS, CONTEXT OF THE MEET AND COMMON
EXPECTATIONS FROM THE MEET

Representing the COPASAH South Asia practice node Surekha Dhaleta set out the tone for the South Asia meet. Through a participatory methodology COPASAH SC member Renu Khanna steered the mutual introductions, wherein the participants shared the context of their work and affiliated organizations. Representing Srilanka Dr. Harishchandra Yakandawala and Asitha Punchihewa from Family Planning Association (FPA) of Srilanka; Tharindu Gunathilaka and Sanath Mahawtihanage from the Sarvodaya Sharmadana Movement of Srilanka, elucidated that Sarvodaya is the biggest Non-Government Organisation in Srilanka and the organisations including FPA and Sarvodaya have been instrumental along with other stakeholders in proposing Health as a Right and Srilanka may soon recognize health as a Right in its Constitution.

Representing Pakistan, Kanwal Iqbal from Community Uplift Programme (CUP) and Gulbaz Ali Khan from Centre for Inclusive Governance (CIG) highlighted that CUP has been amongst the forerunners in carrying out social accountability in Pakistan and both the organizations have experimented with use of community score cards in family planning, citizen report cards in the Khyber Pakhtunkhwa region of the country as well have had experience of experimenting with other strategies like that of budget tracking, Right to Information, Right to Public Services and developing manuals, guidelines etc. for health services providers also. Amongst the Nepal representatives, Narayan Adhikari from the Accountability Lab outlined that the organization is working towards accountability, health and migration in Nepal and is geared towards using Information Communication Technologies (ICTs) extensively with youth in Nepal. Post the April, 2015 earthquake in the country, the Accountability lab has set up citizen help desks to bridge gaps with local people on the ground and the organization has bolstered campaigns such as the Integrity Idol since 2014 to debate around the idea of integrity and demonstrate the importance of honesty and personal responsibility. Kedar Khadka from GoGo foundation in Nepal elaborated that GoGo foundation has been instrumental in conducting public hearings from village, district up to central level, and in developing social audit accountability tools which have been adopted by Ministry of Health education and other sectors also. Two participants from Nepal, Rakshya Paudyal from Beyond Beijing Committee (BBC) in Nepal pointed out the 8 BBC and Kapil Kafle, coordinator Men Engage Alliance South Asia joined the meet later in the day. Representing Bangladesh, Rowshan Ara and Maksuda Khatun from Naripokkho outlined that the organization is women’s activist organisation working for the advancement of women’s rights and entitlements and building resistance against violence, discrimination and injustice. They delineated that Naripokkho was found in 1983 and since then has been involved in numerous activities related to Violence Against Women (VAW) in Bangladesh, which include campaigns, cultural events, training, research, lobbying and advocacy. It has also vast experience in monitoring government health care facilities and in increasing accountability of service providers amongst the key components of work on monitoring, they added.

COMMON EXPECTATIONS FROM THE MEET

Advancing from formal introductions by participants around the context of their work and of their organizations, the schedule was elucidated by Renu Khanna, following which the
participants outlined their common expectations from the meet. The potentials from the meet by the invitee participants were outlined, in terms of taking it as an opportunity to understand health related issue in the South Asian countries, besides exploring it as a platform of experience sharing on challenges and success of accountability practices, and learning from each other on accountability tools, as well taking it a prospective instance to know more about COPASAH, forge cross country alliances with different organisations, networks and strengthen the COPASAH network in the South Asia region.

COPASAH SC member Renu Khanna introducing the schedule of the meet

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Roma Minority and Social Accountability in Macedonia

Roma minority in the countries of the South Eastern European region represents the most marginalized minority of people who live in unfavorable social and economic conditions compared to the general population. Roma people are deprived in many spheres of their lives, including housing, education, employment and health, access to health care and discrimination in health care settings. Social determinants of health have especially negative influence on Roma health, including but not limited to poverty, social exclusion, low level of education, to name a few, thus resulting in poorer health outcomes among Roma in comparison to the rest of the population in the region. For example, estimates are that the life expectancy among Roma in average is 10 years shorter in the region, with infant and maternal mortality rates higher among Roma. There is a an absolute lack of health statistics segregated by ethnicity, as well as absence of relevant research studies conducted and/or developed by competent state institutions. This leads to the fact that the data on the many public health conditions among Roma people are solely based on the research reports conducted by Civil Society and international institutions. Additionally, the lack of data aggravates the health condition since the states do not have comprehensive data as guidance for policy planning and implementation. In order to improve the conditions of Roma minority the countries from the region in 2004 signed the Declaration for the Decade for Roma Inclusion for the period 2005 – 2015 and made a commitment to undertake measures to improve the conditions of the Roma minority. Yet although a decade has ended, there is no significant improvement in the status of Roma minority in the countries of the Region. This is due to the lack of political commitment and funding for the adopted policies aimed to improve the status of the Roma people.

Roma Integration 2020 is a new initiative for improvement of the condition of Roma people, initiated by the European Union.

In Republic of Macedonia, the official census data, which is 14 years old shows that the Roma represents 2.6% 2 to 6% of the population, yet the findings of the civil society organizations shows that this number is much higher and probably reaching 5% to 6% of the population. The situation about Roma minority in South Eastern Europe described previously is also valid for the Roma minority in Macedonia.

Social accountability

Social accountability for the improvement of Roma health was initiated in Macedonia in 2009, by the Association for Emancipation, Solidarity and Equality of Women (ESE). ESE is funded by the Open Society Institute and Foundation Open Society Macedonia,that aims to
improve the health status and immunization of Roma children. In 2011, the Government for the first time allocated funds specifically aimed for Roma in one of the preventive Programs under the Ministry of health. This was the result of the work initiated with the process of applied budget work, advocacy and civil society participation.

The activities included: health education of Roma people, increased number of visits of community (patronage) nurses to Roma women during the period of pregnancy and one year after the delivery of the child, along with measures for active identification and immunization of non-immunized Roma children. In order to strengthen the demand for
health rights and entitlements, civil society organizations (ESE, KHAM, CDRIM, LIL and Roma SOS) started to implement community monitoring work.

Through this work Roma communities where strengthened such that they received the rightful entitlements through the Programs for preventive health care of mothers and children. Later on, community monitoring work was expanded to include examining
the policies for improvement on reproductive health of women, specifically for the Program for cervical cancer screening . Furthermore, the Civil Society Organisations (CSOs) added the social audit methodology into their work.

Parallel budget monitoring work was conducted in order to track the budget allocation and execution for the foreseen measures aimed for Roma. The entire work was followed with
advocacy efforts at the national and local level. The community took an important role especially in the local level advocacy process.

Many challenges were detected that related to the national level implementation of the activities aimed for Roma, including insufficient budget allocation , frequent amendments of the Program(annual budgeted program under the Ministry of Health) during the fiscal year, lack of capacities of the public health institutions to deliver the services, lack of oversight mechanisms as well as  lack of transparency and accountability especially within the Ministry of Health. Community monitoring on local level showed how the problems detected on national level influence on poor service delivery at the local level. The findings from the Roma communities showed that the foreseen activities, like additional visits by patronage nurses in Roma families or educational activities for chilld’s health and immunization are not implemented and does not reach the Roma people. Yet this process empowered Roma people to take ownership of their rights and entitlements and for the first time it enabled them to proactively demand fulfillment of their rights from the health care providers . The majorimpact is seen in the increased immunization coverage rates of Roma children that is a result of the proactive demand from the Roma communities and not a result of the measures foreseen by the Ministry of Health.

Today they are empowered to take a rights based approach to securing their health needs. It is heartening to see that Roma people have started to voice out their dissatisfaction from the services provided, in comparison to the previous time where they felt disenfranchised. Today they demand higher quality of services. Coordinated advocacy at the national and local level has resulted in better functioning of health centers, building infrastructure and equipment, refurbishment and vehicles.

Today, ESE has initiated its work to improve transparency and accountability with the Ministry of health, continuing its work for the demand of the fulfillment of the needed services.

The groups of CSO (ESE, KHAM, CDRIM and RRC) are continuing their social accountability work in order improvement of the health and access to health services for Roma minority in Macedonia.

About the Author
Borjan Pavlovski is the coordinator of the program for public health and women’s health in Association for Emancipation, Solidarity and Equality of women in Macedonia ( ESE). ESE develops and assists the women’s and civic leadership (especially that of Roma community) for development and implementation of human rights and social justice in Macedonia using approaches of monitoring and budget analysis, monitoring of human rights and providing assistance and information.

ESE primarily focuses on meeting the urgent needs of citizens, in particular the vulnerable groups of citizens, and on influencing the creation of long-term changes. ESE also provides legal and paralegal protection, as well as information to different categories of citizens and introduces them with the possibilities for protection of their rights. For more details on ESE
please see: http://www.esem.org.mk/en

The Roma People in Europe : A Story of Marginalization and Exclusion-COPASAH GLOBAL SECRETARIAT

The Roma People and related minority communities constitute Europe’s largest and most vulnerable minority and are present in nearly all member states. There are an estimated 10-12 million Roma in Europe, particularly in Bulgaria (10.33% of total population), Republic of Macedonia (9.59%), Slovakia (9.17 %), Romania (8.32%), Serbia (excluding Kosovo) (8.18%) and Hungary (7.05%). Turkey, Albania, Greece and Spain are other countries where they constitute close to 3 % population of the total. Well over a million Roma live in North and South America today, with the Kalderash clan forming the majority. Of the Romani populations across the world, there is no official, reliable count. Part of the reason for this is their own refusal to register their ethnic identity in official censuses for fear of discrimination, complexity of determining who is a Roma and reluctance on the part of some governments to count Roma People for fear that it will lead to political movements to remediate discrimination against them.

Tracing the early history of the Romas is like unravelling a conundrum of information lying scattered. The Roma are known to have made an appearance in Europe speaking an Indian language, but there is no sure trace of their passage across the Middle East. Their language proves to be the key to the route of their travels as they may have borrowed words from the various peoples they met during their sojourn westward. In fact genetic studies in recent years substantiate this by demonstrating that, despite inter marriages; the ancestral line of most of Europe’s Roma groups can be traced to the Subcontinent.

There have been arguments among scholars about the period and manner in which they left India, but it is generally accepted that they did emigrate from northern India sometime between the 6th and 11^th centuries, then crossed the Middle East and came into Europe. Some groups stayed in the Middle East. The first Roma groups reached Europe from the East in the fourteenth and fifteenth centuries.

Early Romas were horse traders and trainers, basket makers, metal-smiths, woodworkers, singers and musicians. Whatever they did, they mostly traversed land to do it. To understand the Roma problem, it is important to look at this itinerancy, which is characterised by continuous adjustment and adaptation to a changing environment.

By most measures, the Roma are a people or a nation in the strict sense of the term. They have a dominant language, a culture and, above all, a sense of being a people, although they have sought neither a country nor any form of political sovereignty or government structure for their group/community. Roma identity is inherently linked with rootlessness.

The Roma People in Europe are a very diverse group in terms of religion, language, occupation, economic situation and way of living; and although traditionally nomadic, today, a great majority of Roma and related groups are sedentary. Dozens of Romani language dialects are spoken throughout Europe, and a number of groups frequently affiliated or associated with Roma also speak other European minority languages, such as Shelta and Yenish.

Roma, Sinti and Kale are the three main branches. Sinti are found mainly in German-speaking regions, Benelux and certain Scandinavian countries, northern Italy and the south of France (Provence), where they are known as Manush. The Kale (commonly known as “Gypsies”) inhabits the Iberian Peninsula and North Wales. The term “Travellers”, used in France, Switzerland and Belgium, also includes non-Roma groups having an itinerant lifestyle. There may be different communities in the same country: so for example, in Germany and Italy, the communities are referred to as “Roma and Sinti”.During the Byzantine Empire, Roma groups migrated from India to Europe via Persia, Armenia and Asia Minor. The eastern branches of the Roma are still found in the Caucasus, Turkey and the Middle East, where they are referred to as “Lom” or “Dom”.

The variation in Roma reality is also enormous. The historical experience of various groups, their encounters, stopping-places, routes travelled and intersected, and the diversity of their contacts with constantly changing surroundings, have given rise to a great range of cultural and social characteristics within various groups and this continues to evolve. Even so,there seems to exist a feeling of closeness and community; for example, in some groups the saying ‘sem Roma sam’ (‘we are Roma, after all’) is frequently cited to emphasize Roma identity and in praise of cherished group values (hospitality, generosity, friendship), to soothe interfamily tensions or as an expression of a desire to unite in the face of adversity brought about by non-Roma.

Issues of vulnerability and marginalisation

The Roma are at the bottom of the European ethnic heap, under-housed, undereducated, underemployed, underserved, underrepresented and actively discriminated against by landlords, employers, school administrators and governments. Their socio-economic condition differs across different countries but nowhere is their situation good.

The history of European repression against the Roma goes back several hundred years – following the Roma migration from the Indian subcontinent between the 11th and 14th centuries.There are records of enslavement, enforced assimilation, expulsion, internment and mass killings.

One of the first instances of discrimination faced by the Roma People settled in Europe was during the 15th-17th centuries, under the Ottoman Empire in Central Europe. In Western Europe too they were marginalised and persecuted. In the 18th century, which was incidentally the period of the “Enlightenment” in European history, the Roma faced new forms of discrimination: in Spain they were interned, in the Austro-Hungarian Empire, various laws ordered their forced assimilation. In Russia, however, they were considered as equal subjects of the Tsar and were accordingly granted all civil rights. A second wave of migration took place in the 19th century, with Roma groups in central and Eastern Europe leaving for other parts of Europe. Some even crossed the sea. In 1860, Roma slavery was abolished in the Romanian principalities. Nevertheless, at the end of the 19th and beginning of the 20^th century, discrimination became more intense, largely in those regions which had been part of the former Austro- Hungarian Empire.

Discrimination reached its peak during the Second World War, with a genocide orchestrated by the Nazis; nearly 500,000 Roma and Sinti were massacred by the Third Reich. During the Nuremberg Trials, no mention was made of this genocide and no assistance or compensation was given to the Roma who had survived the concentration camps. Migration of Roma from Eastern Europe to Western Europe and then to the United States, Canada and Australia, was initially part of the movement of migrant workers. With the collapse of the Soviet Union and its satellites, and the disintegration of Yugoslavia, this took on much larger proportions. The wars in the Balkans in the 1990s affected the Roma in myriad ways: they were war victims; they were expelled (in particular from the province of Kosovo in 1999) and were granted only “economic refugee” status in the countries of destination. These events must have had spiritual and cultural repercussions on their social fabric.

Human rights violations

The Roma community is the largest ethnic minority in Europe and is a definitely situation of social exclusion and wide-ranging poverty experienced by a significant proportion of them. Over several decades, the analyses presented in reports compiled for numerous international institutions, as well as studies undertaken by various nongovernmental organizations, have all converged and condemned one aspect: the difficult conditions in which Roma families live, or are forced to live.

Examples of direct or indirect discrimination in children are abundant: exclusion from formal schooling is reported in a number of European states and ranges from complete exclusion from mainstream schools to school truancy and abandonment. Roma children are often over-represented among the children placed in out-of-family care, including in institutional, foster care and for residential schools for children with mental challenges. Roma children are in some cases removed from their families on the sole ground that homes are not suitable and stable or that economic and social conditions are unsatisfactory and in some countries, this was a result of communist- era policies where in the state was promoted as superior to parents in raising children. Roma are reportedly trafficked for various purposes including sexual exploitation, labour exploitation, domestic servitude, illegal adoption and begging. Roma women and children are seriously overrepresented as victims in all forms of trafficking.

Discrimination in access to housing often takes forms such as denial of access to public and private rental housing on an equal footing with others, and as refusals to sell housing to the Roma. Many Roma People continue to live in sub-standard conditions in most European countries, without heat, running water or sewerage. Due to lack of adequate recognition of tenure there is always the risk and threat of forced eviction. In some countries, the number of evictions has seen an increase in recent years, often targeting the same migrant Roma families, including children, on several occasions over a short period of time.

Challenges affecting the inclusion of Roma in the labour market are numerous and result in the near complete exclusion of Roma and Travellers from decent work in Europe. Despite positive efforts in some countries towards inclusiveness, levels of unemployment among Roma and Travellers in Europe are invariably higher than among non-Roma. They face discrimination in access to hotels, discotheques, restaurants, bars, public swimming pools and other recreational facilities, as well as in access to services crucial for small business activity, such as bank loans.

One would seldom find a Roma in elected bodies at local, regional, national and supra-national level. Their participation is limited in the European parliaments, with the exception of certain countries in central and southeast Europe. In some countries, the numbers of local representatives including mayors and local councillors appear to have been rising over the past decade but even then the proportion is extremely low by comparison with their representation among the population-at-large.

In the absence of a formal administrative existence, social exclusion only worsens.

Many factors contribute to hindering Roma access to documents and effective citizenship, including armed conflicts and forced migration, breaking down of the former countries (like Yugoslavia), extreme poverty and marginalisation and, above all, the lack of genuine interest on the part of authorities to address and resolve the issues. Restrictive citizenship laws have created additional obstacles with many Romas not being considered as nationals by any state and are frequently denied basic social rights and freedom of movement with the problem particularly acute in the western Balkans.

There is a range of avoidable injustices suffered by the Roma community, particularly with regard to health, and this sprouts from a range of issues – inadequate access to housing, education, employment and other needs, barriers to Roma access to health services. Even in instances where services are available, there is discrimination and a lack of adaptation to efficiently use these services. The precarious health situation among the Romas is not reflected in reliable and up-to-date statistics or data, a fact which further hinders the planning of targeted interventions designed to reduce and ultimately eliminate inequality.

The Roma community is particularly vulnerable to the effects of social conditions on health . Roma populations living in rundown neighbourhoods, sub-standard housing or shanty towns and those with less access to health-care and social services have deficient health habits, high morbidity rate and lower life expectancy vis-a-vis other Romas in the state or Europeans at large. Roma women suffer discrimination at three levels: for being women in a patriarchal society, for belonging to an ethnic minority affected by negative social perception and for belonging to a culture whose gender values have been associated almost exclusively to the function of mother and spouse.

The health inequities faced by the Roma People must be tackled with an understanding that Roma health is not merely to be resolved by national health systems and health professionals but addressed concurrently in all social fields and by all stakeholders. Intersectoral policies in education, training, labour market inclusion, housing and health must be implemented; the Roma population must actively participate in all processes of intervention; health programmes targeting the Roma population must be normalised and strengthened along with adopting a gender perspective and youth empowerment.

More remains to be done in order to achieve respect for the rights of the Roma minority. In many ways Roma demonstrate better adaptation to, both present and to future ones, than other sections of the population: due to their economic flexibility, geographic mobility, in-family education, and communal lifestyle linking the individual into a network of reciprocal security, giving him or a sense of identity. There are possibilities for concerted action. After six centuries in Western Europe, the Roma Population is still waiting for a coherent, respectful policy concerning them to be drawn up and applied.

Roma Organisations and Response of the World Community

The history of Roma organizations goes back a long way, and has passed through a number of stages. In the aftermath of the Second World War, there is hardly a state in Europe in which Roma organizations have not emerged. In conjunction with the profound transformations taking place in the states of Central and Eastern Europe since 1989, there has been a mushrooming of Roma associations there, and these are taking their place in the political arena; the number of associations is on the rise in Western Europe too.

At an international level, the Comité International Tsigane (International Gypsy Committee) was founded in 1967; which organized the first World Gypsy Congress (London, 1971) with delegates from 14 countries and observers from world over. A new international organization, Romano Ekhipe (Romani Union) emerged from the second Congress held in Geneva in 1978 which got full Consultative Status in the UN in 1993. The organization has also set up a cultural foundation, Romani Baxt, with its headquarters in Warsaw, and is gradually establishing branches further afield.

Since the early 19902, the International Romani Union has played an increasingly important role as a pressure group. The Roma political movement is taking shape on other continents as well. The International Roma Federation was founded in 1993 in the United States, with the aim of intensifying cooperation between Roma in the US with those in Europe. There are also organizations in Latin America and Australia.

In May 1989, the member states of the European Union passed a significant resolution that “acknowledges and recognizes that Roma culture has formed part of the European heritage, and this places a duty on the international authorities and governments of the member states to provide this culture and language with the means, not merely to survive, but to develop”.

Public misunderstanding of Roma tends to have a direct impact on policies affecting them. Policies towards Roma often always constitute a negation of the people, their culture and their language, and this can be broadly grouped into three categories: exclusion, containment, and assimilation.

2005-15 was declared as the Decade of Roma Inclusion and the aim was to end discrimination and ensure Roma equal access to education, housing, employment, and health care. An overview of the activities of the past few years shows that European institutions have responded positively and member states are taking an active stance with respect to the Romas. An encouraging sign is that more and more states are endorsing international conventions, particularly those which open up possibilities for combating discrimination on ethnic and racial grounds. Despite the steps takenby governments during the course of the Decade, they were far from sufficient to have any substantial impact, resulting with the lack of progress on the ground. If the Decade is to be judged on its own terms – i.e. its pledge “to close the gap” between Roma and non-Roma within ten years – then clearly it has not been a success. However, all the available information suggests that education is the priority area in which the most progress has been made. Despite a slow start in designing health-related policies, available data suggests there was more progress (albeit slow and uneven progress) made in health than employment or housing.

In 2011 the European Commission adopted in 2011 an EU Framework for National Roma Integration Strategies focussing on four key areas: education, employment, healthcare and housing.Resulting in development of an EU framework for national Roma integration strategies up to 2020. The EU Framework for National Roma Integration strategies up to 2020 brought about a change in the approach to Roma inclusion: for the first time a comprehensive and evidence-based framework clearly linked to the Europe 2020 strategy was developed. The EU Framework is for all Member States but needs to be tailored to each national situation. To reduce the health gap between the Roma and the rest of the population, the EU Framework calls on Member States to provide access to quality healthcare especially for children and women, and to preventive care and social services at a similar level and under the same conditions as the rest of the population. Following the analysis of health measures by 2014, it can be concluded that healthcare and basic social security coverage is not yet extended to all. Promising initiatives should be extended and multiplied to make a real impact on the ground.

Roma organisations

The decade for Roma inclusion contributed to the increased movement of Roma civil society. This led contributed towards formation of new Roma CSOs and building their capacities. In the course of the decade many organizations strengthened their capacities, and through their efforts in practically implementing many decade projects, raised their international profiles and won wider recognition for their achievements. But overall, Roma participation was judged to be more form than substance in terms of outcome and impact. Beyond the Roma elites and organizations, the ambition to involve Roma communities actively in the decade went unrealized, and the reports from all participating countries indicated low levels of awareness and only sporadic community participation. Nevertheless this process enabled Roma civil society to grow and build capacities and currently there are numerous profiled Roma CSO which work on local, national and  international level.

About the Author

This article has been developed by the COPASAH Secretariat which is currently hosted by Centre for Health and Social Justice

(CHSJ) New-Delhi (India) with inputs from Jojo John (India), an expert in social development, environmental governance,right to information, sustainable agriculture and ecological restoration. We acknowledge the inputs from Borjan Pavlovski,

ESE, Macedonia.To know more about COPASAH visit: http://www.copasah.net

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