“Conference on Roma Women and Access to Public Health Care: Ensuring Effective Access”

Final Report

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Palais de l’Europe, Room 1, Strasbourg

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11-12 September 2003

Opening Remarks

Ms. Maud de Boer - Buquicchio, the Deputy Secretary General of the Council of Europe, opened the conference by asking what are the challenges facing Roma women, the actions undertaken, and why. According to Ms. De Boer, Roma women have been confined in silence as guardians of Roma tradition, and torn between their role in the community and the evolving status of women in majority society. This confinement must end and Roma women’s roles must be conceived by themselves and majority society more broadly than as a link to majority society. She called on authorities to associate Roma women wit the implementation of policies concerning Roma.

Beate Winkler, director of the EUMC, recognized a concrete achievement of the Roma women and health project as giving a voice to Roma women to claim their position as a player on the international scene. She noted that the follow up to this conference, however, depended on the participants. As representatives of majority society, participants are all failing on moral, political, and economic grounds. if, in our fight against racism we do not support people in our own communities in the fight against racism. Roma must be supported. Roma must also learn to use conferences such as this to have impact beyond the event itself. As an example, Ms. Winkler cited that only 1/3 of the EU member states had so far implemented the EU Race Directive. Data collection was mentioned as a specific area requiring cooperation to develop common standards on collection, use, and storage.

John Packer , Director of the OSCE Office of the High Commissioner on National Minorities acknowledged that a subset of the HCNM's mandate is to study, follow and recommend in the field of racism. To date, neither access to health nor Roma women have been given much attention in the context of racism. There is a public interest in addressing these issues, especially for those who assert that the New Europe is a society of broad equality and justice. He acknowledged the strong cooperation at the intergovernmental level to produce this report, as well as the Foreign Commonwealth Office of the United Kingdom for its support of the project.

Ms. Simone Weil, Former State Minister-France and former President of the European Parliament, Member of the Constitutional Council, expressed her solidarity with Roma and Gypsies and commitment to their equality and non-discrimination. Recognizing the complex problems facing marginalized communities of Roma, Ms. Weil recognized the work of NGOs in providing health care and other necessary services to Roma where government did not fulfill its responsibilities. Ms. Weil called on the need for policies based on Roma’s needs and aspirations. She found the report “Breaking the Barriers: Romani Women and Access to Public Health Care” very useful for moving ahead on these issues because of its combination of field research, principles, and recommendations for concrete actions.

Soraya Post, President of the International Roma Women’s Network, recognized the report as confirming a health crisis of life and death proportions among Roma. According to Ms. Post, there is a need for greater enforcement of laws protecting access to care, and a need for Roma women to work together to make this happen. She also called for an international conference to Address the issue of forced sterilization of Roma women.

Session 1: Accessing Health Care: Issues of discrimination and exclusion

Mr. Peter Moore, EU Committee of the Regions, and Former Leader of the Sheffield City Council, highlighted the role of local officials in perpetuating or combating discrimination. The concept of institutional racism -- a not necessarily conscious set of attitudes and behaviors that reflect bias and impact on the victims' experiences – was mentioned briefly as an underlying factor that must be addressed. Health practitioners might benefit from awareness-raising about discrimination, including specific training on the situation of Roma, Gypsies, and Travellers. Local politicians and civil servants should be targeted as well. All training should include examples of test strategies and good practices.

Government funding of local NGOs should be encouraged despite downturns in the economy, with attention to any conflicts of interest this might create.

Ms. Caroline Mullen from the NGO Pavee Point in Dublin, Ireland, spoke about the gap in health between Travellers and the majority communžity in Ireland, and the challenge to provide culturally appropriate care. Officials and health systems must be flexible in their approach in the interest of providing effective access and reducing health problems in the longer term. The concept of "Traveller-proofing" any and all health policies was suggested as away to monitor ethnic equality.

Prerequisites for Ireland's Traveller health strategy and perhaps elsewhere include acknowledgment of Travellers' right to travel and in the importance of equality of outcomes.

Ms. Josephine Verspaget, former Chairperson of the Council of Europe’s Specialist Group on Roma, Gypsies and Travellers, recommended a special session of the Congress of Local and Regional Authorities and the Committee of Regions of the Council of Europe on the issue of access to health for Roma.

In the discussion, Ms. Ina Zoon noted a vacuum of information among Roma about data protection and about ethics in research. Roma NGOs might partner with government groups to intervene in the community on these issues.

Emphasis was again made on the importance of a deeper examination of the issue of sterilization of Roma women without their consent.

Session II: Roma Women’s Health: Some Particular Concerns

Dr. Corinne Packer, Visiting Fellow at the Francois-Xavier Bagnoud Center for Health and Human Rights at the Harvard School of Public Health, discussed the concept and reality of reproductive health and rights. In the context of advocating for the health rights of Roma women, it is important to know that the definition of reproductive health, elaborated in Cairo in 1994, includes sexual health. Further, the term reproductive rights refers to a spectrum of rights which Dr. Packer elucidated. The control of reproduction is a key element of living a decent life. Not only the State, but NGOs and other bodies have a role to play in promoting, protecting and fulfilling the range of reproductive rights.

Ms. Anne Vauthier, Coordinator of the PAG-ASA (Centre d’accueil pour les victims de la traite and Member of the Council of Europe ad hoc Committee on action against trafficking in human rights) spoke about the tremendous legal, political, and social consequences for victims of sexual and economic exploitation. More data is required in order to address the roots of the problem.

The weakness of civil society to protect victims of trafficking was acknowledged. A seminar was proposed to examine new approaches to the problem of trafficking as it affects Roma communities, and which would move beyond that taken by governments, police, and intergovernmental organizations to include NGOs and donors in anti-trafficking efforts.

In Belgium, practices and procedures exist to assist victims of trafficking, including a temporary residence permit and opportunity to collaborate with authorities in an effort to identify perpetrators.

The issue of trafficking is not widely discussed among Roma. Roma victims of trafficking and their communities should help authorities to determine their needs.

The plight of the over 20 thousand institutionalized children in Romania was mentioned – this group has a heightened chance of becoming victims of prostitution and trafficking.

Participants raised concern about authorities’ intimidation of victims of trafficking. Intimidation by authorities was also raised in the context of forced sterilisation of Roma women. A call was made for a serious and transparent investigation of the issue.

A representative of the Office of the Directorate General of Human Rights at the Council of Europe said that the Office often addresses trafficking and related issues in country reports. There is little attention to root causes, to mechanisms upon return to the victim’s home country to protect against falling in the hands of traffickers again. A representative stated that the Office would follow-up on allegations of forced sterilisation in Slovakia and would send persons to Slovakia to discuss the matter.

The International Roma Women’s Network stated its commitment to monitoring the developments on the sterilization claims in Slovakia, and to ask for compensation.

III. Session Three: Social Determinants in Access to Health Care: The Relationship of Health to Housing, Education, and Social Benefits

The third session recognized the links between health, housing, education, and employment. Not all Roma are aware that they have economic and social rights; awareness must be raised and access greatly improved.

Dr. Eva Orsos Hegyesi, Former Deputy State Secretary at the Ministry of Health, Social and Family Affairs in Hungary pointed out that, to date, assumptions about the realization of economic and social rights for Roma have substituted for real data. Local authorities tend to have the greatest influence and ultimate responsibility to implement government programs, but unwillingness, prejudice and corruption are most strong at local levels. At the same time, concrete actions at the local level are not just a question of good will but of available resources. High rates of morbidity and mortality among Roma are difficult to combat because local authorities in regions with greater social problems often lack sufficient resources. There is a lack of social assistance in areas where a high percentage of Roma live. Various measures are required to address this state of affairs, including anti-poverty efforts, extra support for Roma to strengthen their own community, and measures against discrimination and prejudice.

Where negative assumptions and biases against Roma lead to recommendations such as the need to educate the Roma on hygiene, these should be condemned and the problematic assumptions underlying them, exposed.

Participants noted that on October 15, a meeting in Rome of the Congress of Local and Regional Authorities would take place, where issues affecting Roma would be among the topics addressed. Also, in December of 2003 the Committee on Social Rights of the European Social Charter will meet. Participants suggested that this Committee should address the situation of Roma in its replies to country reports. To date, Roma issues have been absent.

Ms. Birte Scholz, Project Coordinator for the Women and Housing Rights Program at the Centre on Housing Rights and Evictions, discussed the rights to adequate housing in international human rights law and its relationship to living conditions and the rights of women. Secure housing has benefits beyond health to overall well being. In contrast, poor living conditions can bring about ill health.

With respect to terminology, the term “accommodation” might be preferable to “housing” since “accommodation” better encompasses caravans and other types of living situations that Roma, Gypsies, and Travellers may prefer to inhabit.

There is a direct correlation between domestic violence and the right to housing. The occurrence or persistence of domestic violence indicates a lack of protection of the right to secure housing. A lack of respect for the right to housing renders a woman more vulnerable to domestic violence.

A brief film about a Roma settlement in Belgrade was shown to demonstrate the “Third World” living conditions in which some Roma find themselves in Europe. There is clearly a need to address numerous housing rights violations committed against Roma such as poor living conditions, lack of secure tenure, and forced evictions. More efforts are needed to combat discrimination in housing.

Upon viewing the film, the importance of prioritizing housing issues was acknowledged by many participants. Many agreed that plans to improve health cannot succeed unless housing is addressed: many other benefits and improvements in social conditions follow from better housing.

Since Roma living in informal settlements do not have residence permits, they usually lack identification necessary to access health care and other public services. Often, Roma are unaware of property rights within marriage and upon divorce.

A representative from the OSCE office in Bosnia informed participants that it will conduct a survey of heads of households, as well as the Roma Council, to determine housing needs. Curiously, municipalities in Roma hands have not taken on the urgent issue of legalising Roma housing.

Participants noted that Roma from Kosovo are often treated adversely or differently compared to other refugees in places like Bosnia. This differential treatment includes the denial of work permits.

The OSCE Action Plan on Roma is currently being developed and the input of participants is sought.

There was an appeal to the sponsors of this seminar to provide the tools and means by which Roma women could continue to advocate on the many housing and related issues discussed by themselves. Concern was raised that few government representatives were in attendance. How will the Council of Europe request that the recommendations are adopted?

Ms. Scholz encouraged NGOs to consider litigation as a powerful tool for change in housing and other issues. The possibility of collective complaints to the European Court of Human Rights as well as other bodies was mentioned.

(Day II) Session IV: Roma Participation and Health Policy Development

Ms. Miranda Vuolasranta, a Council of Europe Administrator seconded by the Finnish Government, introduced “The Roma and health care services: A Guide for the health care professionals.” The Guide introduces the origin of Roma and elements of their culture and character, from an inside perspective. Intended to draw attention to various barriers that make it difficult for Roma to access public services, the Guide proposes ways to reduce conflict and find solutions to improve access for Roma. It is already in use by health care institutions and schools, and could provide a model for other countries and institutions interested in such an effort. The book falls within broader efforts in Finland to promote knowledge of different ethnic and language groups as a prerequisite to fostering respect, appreciation and integration.

The Council of Europe agreed to translate the Guide into the Council of Europe languages.

Ms. Hannah Dobronauteanu, Counselor of the Minister, Department of Health in Romania, introduced the health mediator program in Romania -- a collaboration between the Ministry of Health and the NGO Romani CRISS. The program seeks to address Roma’s problems in access to general practitioners, preventive care, and to social support and health education. Details about the health mediator program in Romania include the following: the health mediators are women, they are generally paid by the Ministry and primarily target women and children in communities of 500-175 people.

According to Ms. Dobronauteanu the successful collaboration between the Ministry and NGO is predicated upon a clear division of responsibilities and continuous monitoring. The program promotes teamwork and blurs distinctions among participants. In these and other ways it is beneficial not just to Roma but the entire society.

Romani CRISS has published a Guide of Sanitary Mediator that presents the history, requirements and benefits of the program. Mariana Buceanu from Romani CRISS expressed an eagerness to expand this program in other countries.

In the discussion, it was noted that while various rights pertaining to health are elaborated in the Romani CRISS guide, neither the Ministry of Health nor the NGO emphasised a rights approach. Greater attention might be given to the rights component of access to health care by the health mediators and by the ministry.

A representative from Croatia called attention to programs in cooperation between county public health offices and Roma.

Session V: Strategies to Improve the Health Situation of Roma Women

Mrs. Sarah Corlett, Health Strategy Adviser to the Commission for Racial Equality in the UK, discussed the role of equality bodies in breaking down barriers to health.

In the UK, there is longstanding discrimination against Roma, Gypsies and Travellers. The negative impact of the Criminal Justice and Public Order Act of 1994 includes a decreased responsibility on the part of local authorities for halting site maintenance. This is linked to decreased access of Roma and Gypsies to education, health care, and social benefits.

Some indirect policies to improve their situation include the 1999 Health Act which obliges local and health authorities to secure continuous improvement in health.

In 2000, the Race Relations Act was amended to impose upon organizations an obligation to prove they do not engage in discrimination and to promote equality. This requirement was brought about in large part by the Inquiry into the death of Stephen Lawrence, which addressed institutional racism in public institutions.

The Commission on Racial Equality (CRE) is a non-departmental public body that has a duty to promote racial equality and good relations. It works in partnership with the public sector by giving advice, monitoring and promoting good practices. The CRE also has legal powers to issue formal compliance notices regarding the Act and to bring complaints to a Court about a public body that is in breach of the Act.

The CRE also has a new health and social care strategy to work with primary care providers and local authorities on outcomes and evaluations concerning anti-discrimination and equality measures. It is also developing a strategy to ensure all nomadic people in the UK are recognized legally and statistically as distinct racial and ethnic groups.

Some participants suggested that the CRE had not made efforts to have a good relationships with Gypsy organizations. This impression was acknowledged with a view towards improving communication.

Mr. Martin Kestell, Department of Health and Children, Ireland, spoke about the National Traveller Health Strategy and the Traveller Health Policy Unit in Ireland’s Ministry of Health. This unit develops policy, monitors implementation, and supports the Traveller Health Advisory Committee representatives from various NGOs to contribute to policy development.

The Traveller Health Strategy contains 122 points intended to positively impact Traveller health. They include training for health care personnel on Traveller culture and societal attitudes thereto. A key component of the points is that primary health care projects will be developed in conjunction with Travellers. More generally, health policies developed by the Ministry of Health will be “Traveller-proofed” to make certain they do not negatively impact on Travellers.

Roma have not been on the agenda of the Council of Europe’s Health Committee. Its efforts concerning the health of marginalized groups should address Roma specifically. They should also be on the agenda of the Health ministers’ conference in Oslo in June of 2004.

Closing Comments

The OSCE Office of the High Commissioner on National Minorities highlighted the importance of widely disseminating god practices to address this urgent issue of access to services. Calling for short, medium and long term priorities, the HCNM suggested that all European countries sign the EU Race directive and address housing and standard of living issues immediately. In the medium term, policy strategies and public health measures should be developed, and long term efforts should include changing public perceptions of Roma and increasing Roma trust in public institutions.

Roma women and men as well as health care personnel require greater awareness of their rights related to health care. The right to self determination in relation to health decisions should be a priority, and realized in part through the participation of Roma in all decisions affecting them. One model is the partnership approach taken by Ireland’s Ministry of Health. Greater government support of NGOs as well as intergovernmental cooperation are required to achieve better and more consistent Roma participation in policymaking.

The EUMC emphasised the pragmatism of inclusion efforts to promote coexistence and avoid polarization. A goal should be the participation of Roma in all areas of social life. The ideas and suggestions discussed here are applicable to all institutions, especially those at the local level.

The Council of Europe would pursue including a Gender Adviser in all work of the MGS-Rom division. Support would be given to IRWN and to enhancing Roma women’s participation in the democratic process. A draft convention against trafficking currently underway would benefit from the input of Roma women. The Council of Europe would consider a conference on sterilisation. Mental health and the needs of the disabled would be included in Council of Europe assessments of the social determinants of health. The Council of Europe would prioritize attention to housing issues and would explore further initiatives with the Council of Europe Devlopment Bank where four housing-related projects are already underway. The Roma dimension should be mainstreamed into the activities of other divisions of the Council of Europe; work with the Congress of local and regional authorities and with the Public Health Committee would be priorities. More attention would go to informing Roma of the benefits of data collection and the kinds of protections and safeguards available.