Brazil’s Unified Health System (Sistema Único de Saúde [SUS]) was created in 1990, establishing the principles of universal access, equity, integrality and social participation. SUS is based on decentralization, municipal administration of health services and citizen participation in health councils at different levels, following the principle “that all people have the right and duty to participate individually and collectively in the planning and implementation of their health care” (WHO, 1978, p. 1). However, there was no specific provision for Indigenous Peoples, and it took another decade for the establishment of the Indigenous Health Subsystem (Subsistema de Atenção à Saúde Indígena [SASI]), in an attempt to rectify historic inequities and inequalities. Based on the concept of “differentiated attention” for its Indigenous Peoples, Brazil’s National Policy for Health Care of Indigenous Peoples guarantees universal access, respect and validation of traditional practices, and community participation in the planning, execution and evaluation of its health programs (Brasil, 2002a). Differentiated attention not only refers to SASI specifically as a structure separate from—but still part of—SUS, but also to the principle of “interculturality”, defined as articulation and mutual respect in different sociocultural settings (Brasil, 2002a; Coelho & Shankland, 2011).
Specific strategies and roles were introduced to guarantee political participation and governance through the creation of new spaces of action and communication at the national, regional and local levels (Cornwall, 2004). This article analyzes the potential of independent participation and governance in three spheres of interaction: (1) primary care services, with the presence of Indigenous health agents (Agentes Indígenas de Saúde [AIS]); (2) representation in local and district health councils; and (3) relationships between the government and Indigenous non-governmental organizations (NGOs) as outsourced providers of primary care. There is limited English-language literature in this field. We draw from three decades of research and participation in the development of health services and policy for Indigenous Peoples, and we focus, albeit without limiting our analysis, on our own research experience in the state of Santa Catarina in southern Brazil. This long-term experience compared with data from other parts of Brazil permits an analysis of the impact of the Subsystem for the exercise of Indigenous rights and participation in health services. Establishing intercultural health systems has been a trend in Latin America since the 1990s, but the bureaucratic dynamics, the medicalization of health systems, the entry of other third parties in the provision of services or in insurance, among others aspects, have limited the exercise of Indigenous citizenship in terms of their roles in health systems.
The concepts of social participation and border space are central to our analysis of Indigenous autonomy in local health service contexts (Diehl & Langdon, 2015). According to Francisco Machado (1986), social participation is characterized as a mechanism by which organized groups intervene in the “formulation, administration and evaluation of public policy in the health sector” (p. 299). Border space is understood as a communicational relational field that attempts to “account simultaneously for the nature of what is constructed in this contact zone, as well as for the fluidity and constitutional character of the relationships that develop between different social agents in contact” (Boccara, 2007, p. 60). The new spaces of action and participation, also called “practices of borderization” (Briones & Del Cairo, 2015), are based upon democratic assumptions that differ from Indigenous modes of social and political organization (Garnelo & Sampaio, 2003; Shankland, 2014).
Research experience and methodology
Our reflection is based on our own experience attending forums of social participation with Indigenous and governmental representation as well as on bibliographic and ethnographic research among the Kaingang and Xokleng in the state of Santa Catarina in southern Brazil. Both authors participated in various forums of social governance and served as university representatives on Indigenous health councils at the district (2002–2006) and national (1993–1998; 2000–2004) levels. The authors and their research team have conducted ethnographic research in Indigenous Areas during several periods since 1994, using participant observation, semi-structured interviews, focus groups and document analysis. The ethnographic studies have sought to contribute to public policy in Indigenous health by focusing on a diversity of themes (Langdon, 2017), among them the role of AIS (Diehl & Follmann, 2014; Langdon et al., 2014), practices of self-care and medication, Indigenous participation in social forums (Langdon & Diehl, 2007) and the administration and practice of health services by Indigenous organizations (Diehl & Langdon, 2015). The projects received financial support from national and state funding agencies, and all were submitted to local ethics committees, to Brazil’s National Commission on Research Ethics, as well as to the National Indian Foundation (Fundação Nacional do Índio [FUNAI]), the national agency in charge of Indigenous affairs.
Indigenous Peoples in southern Brazil are in a situation of political, spatial and economic marginality, as is the case in most of the country. In Santa Catarina, the Indigenous population of 16,041 (IBGE, 2010a) comprises approximately 0.3% of the state’s total population and is represented by three Indigenous groups: Kaingang, Xokleng and Guarani. Approximately half of this population lives in legally recognized “Indigenous Areas” (Terra Indígena) or reservations. Little is known about the individuals residing in urban areas who identified themselves as Indigenous in the last census (Portela Garcia, 2015).
Research among the Kaingang has been conducted primarily in Xapecó, their largest Indigenous Area with 3,935 inhabitants. The Xokleng Indigenous Area has 1,071 inhabitants (IBGE, 2010b). Both areas are surrounded by farmers of German or Italian descent with a history of ethnic intolerance and prejudice against their Indigenous neighbors. Also, many of these farmers’ ancestors were trackers (bugreiros) who “hunted Indians” in the beginning of the 20th century (Penny, 2003; Santos, 1997a). Because of intensive contact with the surrounding society, the daily lives of the Kaingang and Xokleng resemble that of their colonist neighbors. Both belong to the Macro-Ge linguistic group. The majority is fluent in Portuguese and not all speak their native language. Their architecture, food habits and dress lack diacritical signs of Indigenous identity, and this apparent lack of distinctiveness has resulted in the perception by health teams, as well as many of the regional residents, that they are no longer authentic Indigenous People who deserve differentiated actions and services.
Both the Kaingang and Xokleng have historically exhibited strong factional tendencies led by strong leaders, often in dispute with individualized interests (Santos, 1997b). As a consequence, they have organized manifestations to protest and demand autonomy and rights since the 1980s, but their struggles have not been unified under a more visible ethnic or regional Indigenous activist organization. This is in contrast to Amazonia, where several Indigenous organizations emerged in the 1990s, such as the Federation of Indigenous Organizations of Rio Negro (FOIRN), the Indigenous Council of Roraima (CIR), and others.
Indigenous health policy
For most of the 20th century, Indigenous health in Brazil was not part of governmental agendas. In 1986, the First National Indigenous Health Conference was held in order to discuss a policy for Indigenous health services and their relationship to the proposed Unified Health System. Attended by health professionals, anthropologists, members of NGOs and governmental employees, the first conference had significant Indigenous participation. Their inclusion was indicative of the growth of the political force of Indigenous organizations in Brazil and important for the success of the conference. Among the concluding resolutions, three are important for understanding subsequent Indigenous health policies and organization of services designed to guarantee the universal right to health: (1) the establishment of a specific subsystem with the creation of an agency linked directly to the Ministry of Health; (2) a model of differentiated attention that respects the cultural particularities and traditional practices of each group; and (3) inclusion of community members in the planning, organization, execution and evaluation of health services. In 1988, the National Constitutional Assembly incorporated these principles and guaranteed the right to full and differentiated health care for Indigenous Peoples. However, it took another ten years for legislative approval of SASI.
In 1993, the Second National Conference of Indigenous Health called for a model of differentiated attention through the creation of health districts, an organizational concept based on the principle of community participation through the creation of health councils at the local and district levels (Mendes, 1995). Without approval of this model during the 1990s, Indigenous health services suffered from poorly defined responsibilities distributed between federal and municipal governmental agencies, NGOs and university providers. The Yanomami Health District was the only one established during the 1990s, and most Indigenous communities remained without regular health services. Lack of definition of the roles of the different actors as well as inadequate financing characterized the entire decade until approval of SASI in 1999 and creation of Special Indigenous Health Districts (Distrito Sanitário Especial Indígena [DSEI]).
Also until SASI’s approval, a network of health councils with democratically elected Indigenous representatives failed to be established. The Intersectoral Commission of Indigenous Health (Comissão Intersetorial de Saúde Indígena [CISI]) was created in 1991 as technical advisor to the National Health Council. Comprised of representatives from Indigenous and non-Indigenous NGOs and governmental organizations responsible for Indigenous Peoples, CISI was designed to be a forum of social control. However, lack of communication with Indigenous communities and of Indigenous representation on the National Health Council limited CISI’s political force and role as advisor. The few Indigenous health councils established at the local level during this decade failed to function effectively for a variety of reasons. A system of councils at the district and local levels did not become a reality until the full implementation of the Indigenous Health Subsystem.
Another demand for participation that received support during this same time period was the inclusion of Indigenous workers on primary care teams. NGOs and universities providing health services started training Indigenous health agents in selective locations in the 1980s (see Langdon et al., 2014, for a more exhaustive review). Their responsibilities and activities, as well as remuneration, varied depending on the context and the service provider. The Second National Conference of Indigenous Health of 1993 recommended professional recognition and regulation of the role. It called for an increase in the number of agents per community and per medical team, basic and continuing education, pedagogical/technical and administrative accompaniment and legally binding contracts. However, lack of organizational and financial conditions during the 1990s prohibited an ample and efficient program for training and hiring AIS, and the presence of Indigenous health professionals in community health services was limited (Langdon, 2010).
After a decade of political struggle for the establishment of an effective and participative health services organization based on the district model, SASI was approved in 1999. The National Foundation of Health (Fundação Nacional de Saúde [FUNASA]) was initially responsible for its management and was replaced in 2011 by the Special Department of Indigenous Health (Secretaria Especial de Saúde Indígena [SESAI]). SASI is organized into 34 districts, independent of state and municipal divisions and varying significantly in size and ethnic composition. Each district manages primary care by outsourcing services with NGOs and municipalities or by directly paying municipal coffers that have Indigenous Areas within their territorial limits (Diehl et al., 2003). SASI and SUS should operate in coordination with municipal and state health services through specific contracts for the provision of specialized and more complex health care. In contrast to the 1990s, SASI has received a significant injection of financial resources, starting with 96 million dollars in 1999 (Garnelo, 2012) and increasing gradually to approximately 386 million dollars in 2015 (MS, 2016).
Kaingang and Xokleng Indigenous Areas belong to the DSEI Inland South that extends from southeastern São Paulo, passing through Paraná, Santa Catarina, to northeastern Rio Grande do Sul. The Health District serves a population of 46,563 individuals in 169 villages and has six base units (polo base) (MS, 2013). The administrative headquarters of the district is located in Florianópolis, some 500–600 kilometers from Kaingang Indigenous Areas and 250 from that of the Xokleng. This DSEI has had many coordinators since its creation, none of them Indigenous.
Indigenous health agents and participation
The National Policy of Health Care for Indigenous Peoples (Brasil, 2002a) institutionalized the role of AIS in order to develop forms of mediation between medical traditions, increase Indigenous participation in health services and contribute to the quality of services. A position of Indigenous sanitation agent (AISan) was created in 2004 for similar reasons. As a member of the health team, AIS should belong to the community, be ideally elected by the same, and participate in primary attention activities and health promotion and prevention. More importantly, the role is understood as the link between traditional and biomedical knowledge as well as between the community and the health team. In sum, AIS are perceived as key participants in the practice of differentiated attention. For successful performance of this role as mediator, training and supervision are seen as fundamental:
The training and qualification of Indians as health agents is a strategy that aims to favor the appropriation, by Indigenous Peoples, of the knowledge and technical resources of western medicine, not as a substitution, but as a supplement to their patrimony of therapies and other cultural practices, traditional or not.(Brasil, 2002a, p. 16)
Although specific data on the number of individuals hired as AIS are difficult to find, an increase has occurred, without question. There were an estimated 2,284 Indigenous health agents in 2000 (FUNASA, 2002) and 4,257 in 2011 (Shankland et al., 2012, p. 5). An employee of the DSEI Inland South informed us that there were 155 AIS in January 2014 and 214 in January 2016 contracted in the states of Santa Catarina and Rio Grande do Sul. Although community health workers were regulated and recognized as professionals in 2002 (Brasil, 2002b), the same has not occurred for AIS. The lack of recognition is coupled with role ambiguity and distant relationships with the rest of the health team members hierarchically ranked by specialty. In addition, adequate training and supervision have not become a reality (Pontes et al., 2012) and high turnover of these workers has been noted due to various social and political factors (Langdon et al., 2014), though not in all cases (Scopel et al., 2015).
Research shows that the degree of participation of AIS as mediators between different medical traditions and between the community and the health team is limited by several factors. Success as a mediator varies according to specific contexts, but most studies indicate that the hegemony of biomedical knowledge as well as the hierarchical organization of health teams reduces the importance of AIS’ mediation role as envisioned in the national policy (Langdon et al., 2014). In addition, manuals developed for training courses concentrate almost exclusively on mastering biomedical techniques, with no orientation regarding interaction with traditional practices.
The continual presence of health team professionals apparently reduces the autonomy and prominence of AIS. In Santa Catarina, for instance, recognized professionals are always present in the reservation’s health clinics, and primary care activities are delegated to the nurse assistant or nurse technician. AIS are forbidden to perform even minimal tasks, such as taking temperature or blood pressure readings or giving injections. They may, however, recommend herbal treatments or homemade physiological serums taught in courses offered by Health Pastoral, a national Catholic organization. Responsibilities for certain tasks are ambiguous. The monthly monitoring of height and weight for children and pregnant women is listed as part of their activities, but in practice it is delegated to the nurse’s aide. The AIS rank as the lowest members of a hierarchical team that is organized according to knowledge and responsibilities. Paradoxically, community members tend to expect the AIS to perform as highly trained professionals. Both the Kaingang and Xokleng AIS expressed role conflict between the communities’ expectations of them as medical doctors and the restrictions placed by the health teams’ hierarchy of delegated practices.
In addition, there is tension between Indigenous social norms, based on specific forms of sociality, kinship and political relations, and the performance of tasks defined by the bureaucratic objectives of the health team that demand that AIS operate independently of these local processes. Local social and political factors influence the selection of community members for the role, contrary to the perceived democratic process of representation. As community workers, they are enmeshed in local networks of obligations and favors that influence their daily rounds, distribution of medications, and other activities they are expected to carry out. Our research, as well as that of others, has observed that activities and objects associated with health services are appropriated and circulated according to the logic of local social networks and not that of rational bureaucratic organization or medical logic (Erthal, 2003; Garnelo & Wright, 2001; Langdon, et al., 2006; Mendonça, 2005; Rech, 2008; C. Rocha, 2005; E. Rocha, 2007; C.D.C. Silva, 2010; Wawzyniak, 2008).
AIS are required to regularly record their activities and work routines through the completion of various forms. We observed that the monthly meetings between the supervisors and AIS were spent completing the forms, preventing time for discussion or dialogue. Such forms generate frustration for AIS and are interpreted as a strategy to regiment and track their activities by a team that ranks them as inferior and ignores their knowledge and opinions. AIS’ perception as inferior members is not helped by the fact that they recognize their salaries (generally minimum wage) are far lower than those of the highest-ranking team members who are not present full time. This bureaucratization of their activities, which curbs their autonomy, has been pointed out for other regions and contexts (Erthal, 2003; C.D.C. Silva, 2010; Wawzyniak, 2008).
In practice, the role of AIS is one of ambiguity, reflecting the tensions between professionally recognized health team members and AIS as poorly trained Indigenous assistants with poorly defined qualifications. The ambiguities of their role emerge in part from the tensions between the hierarchical bureaucratic management of the teams’ work processes and the social and political practices that orient community processes. However, the hegemonic biomedical model fails to value seriously Indigenous knowledge or the dynamics of their practices, contradicting the policy of mutual respect. Brazilian Indigenous health policy expresses an ideology that assigns to AIS the central role of mediating between the health team and the community and among the different forms of knowledge and practices; however, in practice, there have been no advances or innovation in the bureaucratic or biomedical logic that organizes primary health care.
Despite the ambiguity and tensions in this border space of negotiations, our studies and others point out that AIS are important protagonists in a space permeated by negotiations between political subjects endowed with social agency (Diehl et al., 2012; Pontes et al., 2015; Scopel et al., 2015). In spite of the hierarchical nature and limited autonomy of the Kaingang and Xokleng AIS, we found them exceptionally motivated by their experience and several were furthering their careers by studying to become nurses or laboratory technicians (Langdon et al., 2006). In the absence of the permanent presence of other health professionals, Munduruku AIS (Scopel et al., 2015) have more space for innovation and interaction with all available therapeutic options. In the Alto Rio Negro region of Brazil, Pontes et al. (2015) observed AIS to be central protagonists in collaboration between native and biomedical therapeutic models. However, these investigations also show that agency and dynamic interaction of medical practices are ignored, negated or refused by the non-Indigenous health professionals whose strong adherence to biomedical principles and structural relationships impedes them from perceiving the breadth and value of self-care practices present in the villages and the ability of the Indigenous health agents to interact with them.
Representation on local and district health councils
Within the Unified Health System, the health council has a permanent and deliberative character and is charged with the formulation and control of health policy management, including financial and economic aspects. Its members are representatives from the government and civil society, service providers and health professionals. The creation of these councils from the local to the national level is seen as important in a process of institutionalizing citizen participation (Coelho, 2004). Cohn (2003) affirms that they are “new spaces of the construction of social identities and rights, (…) notably, the establishment and dynamics of new political spaces, other than those that are traditionally recognized” (p. 10). She also argues that this new phenomenon should be part of the social science research agenda in order to identify and understand these new spaces.
With the introduction of the SASI, local and district health councils for the 34 Special Health Districts were implemented as an important space for Indigenous participation and governance in the decision-making process related to the planning, evaluation and financial control of health programs in their communities. The local councils are comprised of community members, while membership in district councils (Conselhos Distritais de Saúde Indígena [CONDISI]) follows the logic of parity that guides the Municipal, State and National Health Councils of SUS. Representation is shared between local council representatives and health providers and administrators. Our evaluation of the participatory processes and autonomy exercised in these councils draws upon our experience as members of the CONDISI of DSEI Inland South between 2002 and 2006, analysis of the minutes of its meetings during the same period, and also as members of CISI from 1993 to 1998 and 2000 to 2004.
In 2006, the District Health Council of DSEI Inland South (CONDISI Insul) had approximately 40 members, half representing Indigenous users and the other half divided between representatives of FUNASA, FUNAI, contracted service providers and the Federal University of Santa Catarina. District councils are expected to maintain an annual meeting schedule for the approval and evaluation of health programs, expenditures and proposed activities. However, CONDISI Insul failed to maintain this regularity due to organizational, financial and other types of difficulties. From 2000 to 2006, a total of nine meetings were held (one in each year of 2000, 2003, 2004, 2005, 2006; both 2001 and 2002 had three each). This irregular pattern has continued since 2006 and has been reported as a problem in other districts (Shankland & Athias, 2007).
Indigenous representation on the District Council generated conflict of roles and interests, given that a number of representatives were also employees of the service provider, FUNAI or FUNASA. In a debate about parity at one meeting, a Kaingang employed as a driver asked, “Who do I represent? I work for FUNAI and I am Indian.” These representatives often felt conflicted between voicing demands of their communities and facing possible disapproval or repression by the institutions that employed them. We observed this to be particularly the case with AIS who were on the district council.
Throughout Brazil, several studies have shown that AIS are commonly selected as health councilors at both the local and district levels. For example, 19% of the Indigenous health agents of the DSEI Xingu were health councilors in 2007 (Rech, 2008). The emergence of AIS as important political actors in these intercultural spaces is, to a certain extent, a reflex of their privileged access to biomedical knowledge and their position as members of the health team (Novo, 2010a, 2010b; G. Silva, 2007). Georgia Silva reports that Atikum AIS of Pernambuco (PE) participated actively as local health councilors, pointing out difficulties in delivery of health services under the responsibility of the DSEI-PE (G. Silva, 2007, p. 47). These included lack of medications and transportation problems, two issues that persistently plague most DSEIs. Among the Munduruku, AIS serving as district councilors exercise “political leadership within the space of social control fostered by the health service, as well as outside of it,” participating in negotiations aimed to direct financial resources in accordance with their priorities (Scopel et al., 2015, p. 2565).
Non-Indigenous membership on district councils should be divided evenly between representatives of administrators and service providers and those of professional health workers. This was not the case for CONDISI Insul, in which those representing health workers were also involved with administration and provision of services. From 2002 to 2006, non-Indigenous representation was compromised. Two of the three representatives of health workers held top administrative posts in FUNAI and FUNASA. They were overseers of themselves, a situation that raises questions as to the efficacy of social participation as it is idealized in Brazil.
The democratic model of the district councils is not compatible with the political and social reality of the Indigenous Peoples. As Luiza Garnelo and colleagues observe (2003), there is “incongruence between the notion of generic representativeness required by the health system and traditional modes of legitimization and representation of Indigenous leaders” (p. 80). Similar to the process of the selection of AIS, the choice of Indigenous councilors also references local organization and political processes. The democratic model, intended to generate a multiplicity of representative community voices, ends up voicing particular interests. Frequently Indigenous representatives questioned the legitimacy of the opinions of councilors from their own reservation, denouncing their demands as unfounded or not reflecting the reality of the community. It should be added that the Guarani, a minority ethnic group present in many Indigenous Areas of the DSEI, lacked a representative on CONDISI Insul.
CONDISI Insul meetings, as an interactional space, favored the bureaucratic-administrative dimension in detriment to the political: questions discussed were primarily operational, with voicing of individualized accusations and demands. Because of this, the central role of administrative concerns in the meetings provided little space for negotiation of divergent interests or development of full participation and social control processes expected of such councils that were to oversee planning, administration, operation and evaluation.
Another aspect that emphasized centralization was the lack of communication between CONDISI Insul and the local councils, a problem recognized by Indigenous as well as non-Indigenous members. Indigenous representatives suggested visits by district councilors to reservations and consultation with community leaders in order to better understand the realities, reduce decentralization of power and contribute to the role of the district council in social control. However, these suggestions were not heeded.
Besides the lack of interaction between the local and the district councils, there was no provision for communication with CISI and, consequently, the National Health Council (Conselho Nacional de Saúde [CNS]). Although CISI was charged with the analysis of the demands and strategies of health actions in order to subsidize the deliberations of CNS, the communication structure did not consider a direct relationship between the deliberations of the district councils with CISI or vice versa (see Garnelo et al., 2003, p. 79).
A persistent problem since CONDISI Insul’s founding is preparing Indigenous councilors for their duties. The system of representation and the political role of representative are not well understood, particularly the ideas of democratic representation, selection and responsibilities. Our research indicates that many of the councilors interpreted their role as one of voicing complaints and demands rather than the exercise of influence on the formulation, management and evaluation of health programs and policies (Diehl et al., 2012).1
The administrator of FUNASA (and subsequently SESAI) is responsible not only for defining the councilors’ duties and activities but also for providing the training. Training programs have not been a priority in district health plans and are not present in the budgets. Consequently, districts lack the finances to organize courses (this can also be said for the AIS training). Up until 2006, few courses were offered and most were financed by institutions other than FUNASA. Lack of preparation is compounded by the high turnover of councilors. While rotation of representatives is part of the democratic exercise, in the case of Indigenous health councilors it contributed to the continuing lack of familiarity with the workings of the bureaucratic-administrative culture and health policy. The turnover occurred without adequate preparation of the councilors.
In 2014, a Work Group for Councilor Training was created for CONDISI Insul. Although they organized one course that year, there was no continuation of their activities in 2015 and the problems remained, such as structural questions of the DSEI, lack of financial resources for effective fulfillment of social control and lack of support of Indigenous leaders for the councilors.
In addition, the course formats developed for training councilors lack content relevant to Indigenous needs and forms of traditional political organization. Contents developed for training courses range from the history of health policy in Brazil and councilors duties to the elaboration of projects and planning. The centralizing role of the FUNASA/SESAI administrator, by defining the councilors’ profile, defining the content of the courses, and managing the training, leaves little room for autonomy of Indigenous participation and social control.
Indigenous leadership has long recognized the administrator’s dominance in the process of social control by offering inadequate preparation that concentrates on the bureaucratic processes of health policy. In 2005 Wilson Jesus de Souza, an Indigenous representative of CISI, expressed this very clearly during the IV Workshop in Indigenous Health organized by the authors as part of the III Brazilian Conference on Social and Human Sciences in Health in Florianópolis, SC. He emphasized the need for the participation of the Indigenous movement in order to achieve true social control:
Social control is the basis of Indigenous participation, but there is an apparent contradiction between institutionalization of social control and its freedom of action, a fact that results in less power of Indigenous control in health management. What training is offered for the local councilors? On what basis are necessities defined? How do they teach empowerment, given that empowerment is a political dispute that is left out of training? Currently they teach how to deal with bureaucracy, but not to question it. As long as the Indigenous movement does not itself assume the responsibility for training councilors, there will not be social control.(Cardoso & Souza 2005, p. 2)
At the time of workshop, the Forum of Presidents of CONDISI had been created and it was hoped by the Indigenous leaders that it would represent greater Indigenous social control. Composed of presidents of the 34 district councils, the majority of them Indigenous, the forum’s responsibilities overlap with those of the local and district councils, indicating a possible dislocation of the process of participation and community social control to this central organization above the district level. However, contrary to the expressed desire of Wilson de Souza and other leaders, this Forum has not developed into an autonomous Indigenous institution and remains directly linked to the national administrator (FUNASA and subsequently SESAI), indicating governmental hegemony over it and the process of participatory governance (Morais, 2016; Shankland & Athias, 2007; Teixeira, Simas & Costa, 2013).
Indigenous organizations as health service providers
Since the inception of SASI, primary care services in Indigenous areas have been provided through contracts established with NGOs or municipalities. This policy has created new opportunities of action for Indigenous organizations. Between 1999 and 2004, a total of 26 Amazonian Indigenous associations signed contracts with FUNASA as health providers (Garnelo, 2012, p. 47). In 2004, policy for outsourced service management reversed as centralization by FUNASA headquarters in Brasília increased and the resources and responsibilities for Indigenous organizations were curtailed (Garnelo, 2012). This was part of a movement to favor municipalities as providers for health services.
Toward the end of the period favoring Indigenous organizations as outsourced providers and in the midst of accusations of mismanagement and corruption against the Amazonian Indigenous organizations, a Kaingang organization was created in 2003 and hired to manage primary care services on the Indigenous Area of Xapecó. Different from the 250 Amazonian Indigenous organizations created in the 1990s for defense of territory and political activism (Albert, 2001), it was founded as a private non-profit entity specifically to substitute the municipality as provider of primary care on the reservation. In an interview, one of its presidents affirmed that FUNASA had encouraged the creation of the NGO with the expectation that it would become a model of Indigenous management for other reservations. The Indigenous founders wanted to assume the responsibility of health services that were in the hands of the municipality, which they believed to be diverting designated resources to non-Indigenous services. In an interview, the president of the NGO stated that they wished “to have power and the autonomy to begin to assume our own direction”. According to him, health was not its only concern, and the organization was
created for a greater purpose, the question of agriculture, of education, housing. Today we have not only a contract with health, but also agriculture, with the state of Santa Catarina….[T]oday we advise voluntarily all the associations within the reservation, such as the mothers’ club. Besides health, the association performs voluntary work to help the community. It was created in order to manage the contract, to handle a moment of crisis.(Interview conducted by the authors in January 2007)
During the 58 months of its activity as health provider between 2003 and 2008, the NGO received approximately $1,106,000.00 (MTF-CGU, 2016). The Kaingang NGO attempted to diversify its actions in search of greater autonomy for management of its financial resources. However, this autonomy was just for show given that health resources could only be applied to actions predefined by FUNASA. It is important to remember that this NGO was created during the period in which FUNASA was terminating its contracts with Amazonian Indigenous NGOs, and its limited autonomy in the execution of routine actions reflects the new process of centralization. Also, the NGO’s capacity to execute the health plans and the local organization of services were weakened because of the administrative-bureaucratic flow centralizing management in the District Coordination Office, located some 500 kilometers away in Florianópolis, and inconsistent support by FUNASA. According to the NGO president, constant changes of district coordination and failure to transfer financial resources to the organization as scheduled disrupted the provision of health services. In addition, the community blamed the NGO for the disruptions of health services that were caused by FUNASA’s delays in the transfer of financial resources (Diehl & Langdon, 2015).
FUNASA’s control was reflected in the NGO’s relationship with the health team, causing it to become task oriented in order to fulfill bureaucratic demands. The health team expressed difficulties in aligning the community’s need with the demands and resources stipulated in the agreement between FUNASA and the NGO. Besides the disconnection between the two, the lack of a formalized local coordinator in the health clinics, discontinuity in work conditions (interruptions in transportation, telephone, medications or other supplies) and high overturn of health professionals jeopardized the activities and produced indignation among the team members. Inter-institutional and interpersonal conflicts plagued the provision of health services until 2008, when the contract was terminated (Diehl & Langdon, 2015).
The contracting of Indigenous organizations as outsourced providers for primary care was totally abandoned when SESAI substituted FUNASA as national administrator in 2011. The strategy of hiring outsourced providers has been maintained, although the number of participating organizations has been drastically reduced and none are Indigenous.
The role of Indigenous NGOs as health providers was seen as an opportunity for participation in the governance of health services and a strategy to support Indigenous forms of organization, creating a space for expression and strengthening of identity as well as for empowerment (Shankland & Athias, 2007). However, the responsibility of managing primary care shifted the role of Indigenous organizations from that of political activism to that of professional management (Albert, 2001), converting them into reproducers of the dominant system. As evident from the Kaingang experience, priorities, planning and execution of health assistance became defined by external sources and limited Indigenous decisions and autonomy.
Similar to other Latin American countries (Boccara, 2015), research in Brazil shows that the opportunities for greater Indigenous involvement in the exercise of their rights and increased agency in the border spaces created by the State for negotiation are full of ambiguities and paradoxes (Albert, 2001; Garnelo & Sampaio, 2003, 2005; Magalhães, 2001; Shankland & Athias, 2007). The Indigenous Health Care Subsystem created new roles and border spaces for Indigenous participation in three spheres of action and communication: in health teams, in forums of participation and social control, and as health providers. However, Brazil’s model of bureaucratic centralization and managerial organization in Indigenous health, similar to the general management model of SUS (Franco & Martínez Hernaez, 2013), limits social participation and quality of health care that pretends to meet and respect the pluri-cultural composition of the population.
The Indigenous health agent suffers from ambiguous responsibilities and limited autonomy as mediators between actors and systems of knowledge. In contexts where other health professionals are continually present, the role of the AIS is that of a subordinate, without recognition as a specialized role. In such contexts, the AIS are submitted to a series of bureaucratic tasks that reduce the possibility of autonomy or contribution to health care that aims to respect and articulate with traditional medical practices.
The democratic processes of participation and social control envisioned in the election of Indigenous representatives for local and district councils also has been a contradictory process with problems of representativeness, lack of collective consensus, turnover of councilors and little preparation or understanding of the role. In the case of the district council of DSEI Inland South, for example, the individualized demands raised by the Indigenous representatives, many of them employed by the institutions responsible for health services, in general did not reflect collective interests.
Finally, with respect to Indigenous NGOs’ role as outsourced service managers, the potential of autonomy and agency is limited due to the contradictions observed in this border space of negotiation with the State. Problems originating from the centralized model and provider responsibilities merge in the perspective of the Indigenous community. The Indigenous service provider faces the demands of both employer and users. The community blames the NGO for delays in financial resources that cause problems in the maintenance and employment of personnel, accessibility of medications and other disruptions in health services. Simultaneously, contractual agreements determine work routines and rhythms, forcing the Indigenous organizations to follow planning, goals, deadlines and budgets that are determined externally. As Bruce Albert (2001) observed, the role of professional management converts Indigenous organizations into reproducers of the dominant system whose activities are shaped by priorities defined in spaces external to the ethnic groups. The increase of financial resources for assistance activities, particularly those of health, assumes priority over the defense of Indigenous rights.
Latin American governments have established diverse strategies in health policies to guarantee Indigenous Peoples access to services, defining these as intercultural spaces where there is encounter among different cultural traditions. As Guillaume Boccara has argued with regard to Chile (2015), the notion of “intercultural” has been appropriated by the State and has lost its critical potential. Its political potential with respect to the demands of activist Indigenous organizations also has been lost. As we have seen in the case of Brazil, the State continues to place limitations on the right of its Indigenous Peoples to participate fully in health programs as promoted by the National Policy of Health Care for Indigenous Peoples.
Seventeen years after the creation of the Indigenous Health Care Subsystem, the political and administrative contexts reflect local processes of bureaucratization that hinder work relations and the dynamics of service provision. Establishing health services and activities of social participation, as practices unaligned with local realities, imposes obstacles to the viability of the basic principles and directives of SASI. Political policy and programs guided by principles of inclusion and participation of all citizens are always in construction, juxtaposing and straining different visions replete with contradictions and characterized by “new struggles of power and of classifications between new State or para-State social agents” (Boccara, 2015, pp. 196–197), producing spaces of ethnic identification and reification of culture (Boccara, 2007). As pointed out by analyses of the indigenization process in Latin American, the asymmetries of power between Indigenous Peoples and national governments continue in the ideologies and praxis of indigeneity (C.T. Silva, 2012, p. 28).
We would like to thank our research group colleagues and the Kaingang and Xo-kleng who have made possible the research and reflections reported in this article. We also would like to thank several institutions for their financial support for numerous project and research grants: FAPESC, CAPES, CNPq, MS-SCTIE-DECIT and IBP.
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Participación indígena en servicios de atención primaria en Brasil: ¿Autonomía o burocratización?
Eliana Elisabeth Diehl and Esther Jean Langdon
Resumen: En 1990, el Sistema Único de Salud institucionalizó nuevas relaciones entre el gobierno y la sociedad, estableciendo en 1999 el Subsistema de Salud Indígena. Se crearon nuevos roles para el ejercicio democrático de la participación indígena con prominencia en tres espacios de frontera: agentes indígenas de salud como miembros de los equipos de salud; representantes indígenas en los consejos de salud; y organizaciones indígenas como proveedores de atención primaria. Este artículo explora estos espacios basado en investigación etnográfica del sur de Brasil. Se concluye que los roles creados para la participación y gobernanza indígena son ambiguos y contradictorios. Cuando se participa en nuevas oportunidades creadas por el gobierno, los actores indígenas son sometidos a un sistema que ofrece poca posibilidad de tomar decisiones autónomas o actuar.
Palabras clave: gobernanza, organizaciones indígenas, participación social, pueblos indígenas sudamericanos, servicios indígenas de salud, trabajadores comunitarios de salud
Participation indigène dans le système de soins au Brésil: autonomie ou bureaucratisation ?
Eliana Elisabeth Diehl and Esther Jean Langdon
Résumé: En 1990 le système unique de santé brésilien, le SUS (Sistema Único de Saúde) institutionnalisait de nouvelles relations entre le gouvernement et la société en donnant aux usagers un rôle central et en leur attribuant une large participation dans tous les secteurs des soins. En reconnaissance des inégalités et iniquités historiques infligées aux peuples indigènes, le sous-système de soin indigène fut établi en 1999. De nouveaux rôles furent créés pour l’exercice démocratique de la participation indigène et sa reconnaissance dans trois zones d’action et de communication délimitées. Cet article explore ces espaces sur la base de recherches ethnographiques réalisées au Sud du Brésil et conclut que les rôles créés pour la participation indigène et la notion associée de gouvernance sont souvent ambigus et contradictoires.
Mots clés: communauté, gouvernance, organisations indigènes, participation sociale, peuples indigènes d’Amérique du Sud, services de soins indigènes, travailleurs de la santé