People with Disabilities and the Development of Community Strategies To Promote Participation in the Labor Market

ABSTRACT:

This paper is about a retrospective study on community strategies for inclusion of People with Disabilities (PwD) at work, carried out by a university extension project in partnership with the Basic Health Unit between 2012 and 2016. The documentary research identified the profile of those served and the actions included support in group (34 encounters) and individual/family (172 assistance meetings/20 visits to the workplace). There was investment in the constitution of a community support network with public and private actors. Among the 22 participants, 10 started paid work, 6 were unemployed and 6 did not start paid work or had previous experience; the average age was 29 years and, mostly, had intellectual disability, little schooling or work experience. The group made it possible to meet the needs of the participants, to address collective issues and share information. Individual support was essential to address unique needs, considering the lack of a policy to support the permanence of PwD in companies. The creation of a network among those involved allowed the interlocution between services to deal with the issues. There was dialogue with the proposal of Supported Employment and Community Based Rehabilitation. These aspects facilitated personalized processes, demonstrating the importance and feasibility of community initiatives that may indicate public policies of access to rights.

KEYWORDS:
Education; People with Disability; Occupational therapy; Social participation; Right to work

RESUMO:

Este artigo trata de um estudo retrospectivo sobre estratégias comunitárias para inclusão de Pessoas com Deficiência (PcD) no trabalho, realizadas por projeto de extensão universitária em parceria com a Unidade Básica de Saúde, entre 2012 e 2016. A pesquisa documental identificou o perfil dos atendidos e as ações compreenderam o apoio em grupo (34 encontros) e individual/familiar (172 atendimentos/20 visitas ao local de trabalho). Houve investimento na constituição de rede comunitária de suporte com atores públicos e privados. Dentre os 22 participantes, 10 iniciaram atividade remunerada, 6 estavam desempregados e 6 não iniciaram atividade remunerada nem tinham experiência prévia; tinham em média 29 anos e, majoritariamente, apresentavam deficiência intelectual, pouca escolaridade ou experiência de trabalho. O grupo possibilitou conhecer as necessidades dos participantes, abordar questões coletivas sobre o tema e compartilhar informações. Os apoios individuais foram essenciais para tratar necessidades singulares, considerando a inexistência de política de apoio à permanência de PcD nas empresas. A criação de rede entre os envolvidos possibilitou interlocução entre serviços para enfrentamento das questões. Houve diálogo com a proposta do Emprego Apoiado e Reabilitação Baseada na Comunidade. Esses aspectos facilitaram processos personalizados, demonstrando a importância e a viabilidade de iniciativas comunitárias que poderiam indicar políticas públicas de acesso a direitos.

PALAVRAS-CHAVE:
Especial; Pessoa com Deficiência; Terapia ocupacional; Participação social; Direito ao trabalho

1 Introduction

The importance of work in everyday life and the role of worker in the constitution of identity is practically consensus. Working arouses pleasures and displeasures, being a privileged space for the establishment of a diversity of interpersonal relations, particularly in relation to groups, that transcend the family relations and configure the arrival to adulthood.

The work available in capitalism implies the recognition of alienation and exploitation as constitutive of this form of work (Oliver, 1990; Tomasini, 1995), but still being able to participate in the world of work is part of the process of social inclusion. To Ghirardi (2004), to be included in our society means to deal with the potential of production and consumption that each individual demonstrates and participates in relation to the collective, so that this production results in socially recognized values of exchange and guarantees or amplifies the participation in social contracts.

People with disabilities (PwD) have historically claimed spaces for social participation, mainly through access to education and work. These demands are part of the broader social struggles that took place in Brazilian society during the period of redemocratization, with the Constitution of 1988 being its mark of formalization.

Although formalized, the right to education, health and rehabilitation, leisure, culture, work and social protection, are still far from the daily life of the PwD, being numerous the physical and attitudinal barriers for its realization. These barriers can be understood when considering the coexistence of different models of understanding of the disability, especially the biomedical model, in which the disability is an organic or mental problem of the subject that must be cured and repaired, and the social model, which comprehends disability as a social construction in which the inequalities experienced by the PwD are only manifested in a society that is not sensitive to the diversity of lifestyles (Diniz, 2013).

The PwD constitute one of the groups whose life trajectory is marked a priori by conditions of segregation, illiteracy and unemployment (Brogna, 2006), being thus predisposed to processes of marginalization, vulnerability to disaffiliation, in which the fragility of labor relations and relational support gains relevance (Castel, 1994). Adults with disabilities experience situations of non-attachment to work or precarious work, often with social relationships that do not exist or are restricted to the family environment.

Unemployment or underemployment among PwD should be understood from a number of factors, such as history, education, transport, work environment, access, ideology and culture (Barnes, 2016). To the author, the disadvantage of PwD in relation to paid work is related to the social organization of work in the capitalist world, and public policies will have a limited impact on the inclusion of workers with disabilities. In addition, the distribution of labor and employment in the global market, as well as the conditions of dignity for its exercise, are extremely unequal in different parts of the world.

Since 2008, the United Nations Convention on the Rights of Persons with Disabilities has been incorporated into Brazilian legislation, and is a legal framework to guarantee the rights of this population (Secretaria Nacional de Promoção dos Direitos da Pessoa com Deficiência, 2012) and, in 2015, the Brazilian Law on the Inclusion of Persons with Disabilities (Lei nº 13.146, 2015) highlighted the right to professional qualification, guarantee of conditions of access and permanence in work, incentive to entrepreneurship and self-employment, including cooperatives.

Prior to the Brazilian Law on the Inclusion of Persons with Disabilities, Law No. 8.123/1991 of employment quotas for PwD (Lei nº 8.213, 1991) was first regulated in 1999 after years of clashes between the PwD movements and the employer sectors. In effect for 17 years, it has timidly served its purposes, since not all companies comply with it, because they affirm that the PwD do not have enough professional qualification to carry out activities and services that fulfill their criteria of qualification and productivity (Ribeiro & Carneiro, 2009; Neves-Silva, Prais, & Silveira, 2015; Pereira & Passerino, 2012).

This training has historically been in charge of the specialized institutions that, in general, do not respond to the real demand for the work, since many only develop protected workshops of work, without connection with the competitive formal market (Araujo & Schmidt, 2006; Jurdi & Lima, 2014).

Among the alternatives to qualify the PwD for work in Brazil is the Learning Law (Decreto nº 5.598, 2005), which determines that young people with disabilities, from the age of 14 and with no age limit, can work as apprentices in companies while attending institution for up to two years. Under these circumstances, the PwD can accumulate the Continuous Assistance Benefit with the salary (Santos, 2011). It is expected that success in the apprenticeship experience will lead to the formal hiring of the PwD by the companies.

The Continuous Assistance Benefit, granted to PwD unable to work and living in extreme poverty, is currently subject to temporary suspension, no longer cancellation, in the event of a possible entry into the labor market (Ministério do Desenvolvimento Social e Combate à Fome, 2011). Although it is an important social achievement for youngsters and adults with more severe disabilities, and the temporary suspension restate the relationship beneficiary and worker with the PwD, in some situations it may be another factor discouraging inclusion in the world of work, considering their uncertainties and difficulties (Pereira & Passerino, 2012; Neves-Silva et al., 2015).

Although the legal frameworks for access of PwD to work exist, Brazilian social policies lack programs that respond to their specificities in relation to actual stay and access to career plans, factors that would guarantee more lasting work experiences. In this sense, what has happened is the transfer of facing the barriers to professional qualification, accessibility, awareness of companies and society in general to the people with disabilities and their families.

Considering the aspects presented, in particular the gap between the rights of the PwD to training and work guaranteed by law and their actual experimentation in everyday life, we believe that the analysis of a project of assistance, developed over a period of four years in a community context, could reveal qualitative and procedural aspects that contributed or not to the achievement of this objective, in order to broaden the debate from the perspective of actions that may subsidize programs and public policies that guarantee beyond inclusion, permanence at work.

2 Method

This is a retrospective, descriptive and analytical case study (Yin, 2005) anchored in a qualitative approach that sought to identify and analyze 'how' and 'why' certain actions and strategies implemented by a project of assistance and education, carried out in the period from 2012 to 2016, were developed. This project was the result of a partnership between professionals of the Laboratory of Rehabilitation with Emphasis in the Territory of the Occupational Therapy course of the University of São Paulo and a Basic Health Unit (known as UBS) of the Municipal Health Secretariat of São Paulo in response to an earlier study, which pointed out the desire to work and be socially recognized as one of the main needs of the PwD of this territory (Aoki, 2009).

Data collection took place in 2017, through documentary research of all the printed and virtual records made throughout the project, starting from the premise that they would reveal the implemented strategies and their theoretical-practical foundation. These documents included reports presented to the Culture and Extension Program of the University, minutes and memoirs of meetings held by the scholarship students and occupational therapists supporting the project, questionnaires applied to the PwD upon admission, records of participation in activities, individual and group sessions, contacts with professionals working in the region and institutional visits.

The data were collected from two sets of variables: the first one referred to the participating PwD and the personal or situational characteristics that are considered as usual prerequisites or influence the entrance to work, such as schooling and reading and writing condition, previous work experiences and professional courses, type of limitation to carry out activities and participation in social life, access to social and labor benefits, linkage to socio-cultural activities, social interactions and the condition of moving around the neighborhood and city; the second set of variables referred to the individual and collective follow-up actions of the participants, the group contents related to the work world and the identification of the paths made to access services and professionals that composed a territorial network to support the inclusion of the PwD at work.

The treatment of the data was carried out through thematic units of analysis related to the types of support (whether individual or group), its range (personal, family, community) and its contents (demands, doubts, desires and difficulties) dimensioned by the paths of the PwD. Subsequently, they were interpreted through a critical investigative approach that indicated the underlying conceptions of disability and social participation and called for the analysis to be approached with the assumptions of Community Based Rehabilitation and Supported Employment.

The data were processed and analyzed by the authors, two of whom had participated directly in the implemented actions, and two focused exclusively on the documentary records. Possible differences and consensus on the analysis were discussed and elaborated in a meeting.

The project was approved by the Ethics and Research Committees of the Municipal Health Secretariat of the City of São Paulo (Opinion No 1.714.722) and the Medical School of the University of São Paulo (Opinion No. 1.675.973).

3 Results and discussion

The project development stages recognized by the documentary analysis initially involved the identification of 61 young and adults unemployed and of economically active age among the approximately 500 people with some type of limitation, living in the territory attached to the Basic Health Unit and the invitation to the PwD and their families to participate in a discussion group on the world of work (Grupo de Apoio à Inclusão no Trabalho - GAIT - Support group for workplace inclusion), as process triggers; the stages of closer contact between public and private services, as well as professionals in support of the PwD in the territory, according to the personalized inclusion projects and, finally, the expansion of these contacts for the inclusion of possible employers, resulting in a thematic forum on inclusion in the work to discuss proposals in the region.

Among the 61 invited people, the assiduous participation of 22 people was identified over the 4 years, and the needs expressed by them and/or perceived by the professionals were the guiding thread of the actions, revealing strategic support centers. Among them, there were 12 women and 10 men, with a mean age of 29 years. As for schooling, 12 had completed High School, although they had little or no reading and writing skills. Everyone had autonomy to perform daily activities and mainly independence to commute from home to work. More than half of the participants (15) presented mild or moderate Intellectual Disability. Among the 16 people who entered the job market during the project, one had physical disability and the other had mild intellectual disabilities, 10 remained employed at the end of the experiment and 6 had been removed from the job or resigned from their activities. People with multiple limitations, moderate intellectual disability, and those who needed a higher degree of support for daily activities were in the group of people who did not engage in work activities throughout the process, although 3 of them had previous work experience.

Ten of the participants had previous work experiences that required intense physical exertion in activities considered 'operational' as a cleaning assistant, cafeteria helper, retail store operator (support to fitting room), and twelve participants had no previous work experience. For most participants, social coexistence was restricted to the family environment, with limited opportunities for expansion of social relations.

The reports related to the support actions carried out indicated 34 meetings of the Support Group for Workplace Inclusion (GAIT), conducted between 2012 and 2016 and coordinated by the executive team, composed of occupational therapists and students of occupational therapy.

There were also 20 visits to support services for professional training and inclusion and 172 follow-ups, which included assistance to participants and their families, visits to workplaces and follow-up in vocational courses in the region. It is important to point out that the process of identification and visit to the institutions was accompanied by the PwD as a way of appropriating the conditions of the territory resources, from the Community Based Rehabilitation perspective.

Individual and group supports were developed concomitantly, according to the demands of the participants. Participation of people in GAIT occurred before, during and after labor market inclusion, as well as in situations of termination of employment contracts, when applicable.

The contents expressed in the period of awareness of the participants and their families to the theme, done at the beginning of the work, and throughout the processes of follow-up in training resources and professional placement, as well as daily work/employment, were about the desire to work, need for income, doubts about laws and documents, little information about training processes and job vacancy (existing courses, such as initiating contact with companies, curricula, etc.) concerns about the real work capacity, salary value and job instability when compared to the Continuous Assistance Benefit, and for those who entered the job, difficulty in daily relation with the execution of the tasks and with the work colleagues (disagreements, conflict resolution and occurrence of bullying).

The identification and invitation to the PwD was possible by the previous existence of a registry of PwD of the territory assigned to the Basic Health Unit, indicating, in this case, a responsibility of Primary Care with these users, normally perceived by the health system only in other more specialized levels of attention. We believe that this fact is due to the dialogue between Primary Care and the Community Based Rehabilitation in this territory, in order to mobilize local resources for expanded health perspectives.

The criterion for invitation and participation in the group was exclusively the fact of being of age to work according to the current legislation and to be unemployed. The steps following the presence in GAIT were given as answers to the collective and individual needs expressed by the subjects and perceived by the professionals. These aspects indicate the approximation with the social model of disability, insofar as it does not establish exclusions from the functional parameters of the 'employable disabilities', but an opening for the construction of paths that encourage reflection among the people on the forces that compete for their exclusion from work. The experimentation of real situations in search of access to resources of capacity and professional placement of the community was proposed to all those who wanted to become workers.

It was identified that the steps unfolded from an initial nucleation strategy of the PwD localized that were initially dispersed. This strategy, which triggered the project itself, was maintained throughout the execution period in the form of systematic group meetings and workshops, considering the potential for identification of common demands, collective elaboration of coping strategies and response to the practical needs of the training process and litigation of vacancies, in addition to the fight against social isolation present in the lives of these young people.

In the initial group meetings, the desire to work was confirmed as urgent, both by the need to generate income and to be socially recognized for work. The choice for grouping seems to have been due to the possibilities that this approach poses, such as the exchange of experiences that favor new representations and meanings about individual needs and desires, participatory insertion in the family, in the community and in social groups. From this initial effort, other alternatives, including individual and family, were developed to respond to the singularities of the paths of each participant.

The dynamic relationship between the various support instances along the individual paths required the identification and analysis of the support centers implemented, as follows:

1. Support for People with Disabilities: by encouraging participation in collective activities, such as the Support Group for Workplace Inclusion (GAIT), as well as in individual assistance, in addition to assistance at admission and participation in a vocational school, discussion with the Family Health Teams about problems experienced by the participants, direct support to the initial contacts between worker and company (job interview, access to requested documentation, mainly medical report) and monitoring in the work environment, when possible.

2. Family Support: family assistance to resolve doubts about the world of work, to re-signify the expectations regarding the PwD and concrete support to the situations experienced by the family that arise from this theme.

3. Activation of community resources: identification of actors involved with the PwD of the project and those with the potential to offer support in different sectors of society, and fostering the creation of a network of services around a thematic forum, covering different sectors involved.

The approach that starts with the subject and includes his/her family nucleus from a community reality, for planning and implementing actions, is coherent with the foundations of the Community Based Rehabilitation.

3.1 Support to PwD

3.1.1 Strengthening of GAIT

Initial support to PwD was for the encouragement to the constitution of a support group through a broad approach that comprised the family nucleus as the focus of action, expressed by the invitation to individuals and their families to participate in the GAIT.

The very option for grouping supposes that this type of space stimulates the exchange between the participants. Throughout life, human beings participate in different social groups, which contributes to the formulation and expansion of their interpersonal relationships (Ballarin, 2007). For participation in the world of work, previous experience of group sociability may be fundamental.

As for the circulating contents, the expression of fears, expectations, needs and elaboration of proposals, resonated individually and collectively, contributing to the construction of a sense for the experience. Fears and doubts were shared regarding the possible job interview, the lack of basic computer knowledge, the lack of knowledge of the legislation, and the lack of personal documents and medical reports required for hiring according to the Quota Law.

To deal with some of these issues, thematic workshops were organized on Saturdays (from March to April 2013), at the local Escola Técnica do Estado (ETEC) - Technical School of the State. The topics covered by the workshop, such as the basic skills required for working (personal presentation, job interview, behavior, interpersonal relationship, coping with difficult situations in the workplace) were chosen in order to answer the collective questions, using didactic alternatives, such as dramatizations, presentation and discussion of cases, testimonies, resulting in significant participation, interaction and exchange.

The search for collective answers required the involvement of public agents, such as the Program for Support to Persons with Disabilities in the State of São Paulo (known as Padef), which has a database with a registry of candidates with disabilities and employers offering vacancies. Padef's support made it possible to reach out to some companies interested in hiring PwD. Four of them attended the workshops and presented the vacancies available. The result was that two of them hired PwD.

Workshops were also held to train and use computer resources, such as the creation and use of electronic mail, access to social networks, company sites and the creation of curricula. Most of the participants reported that they did not have access to Information and Communication Technologies (ICT) and showed difficulties in reading and writing, which seems to back up the digital exclusion experienced by this population, making it difficult to access information about the world of work. After these workshops, GAIT was held every two weeks with the attendance of about 10 people, totaling 34 meetings.

Another need identified by the group was the recognition of the resources of the territory related to the world of work, which motivated visits to vocational schools in the region, solidarity economy projects and public placement services in the labor market.

The group meetings were also important moments in support of the maintenance of the work experiences, with debates about anxiety-generating situations, such as difficulties in performing work tasks, absences and delays, administration and handling of bank accounts, fear of dismissal, all of these completely new situations for most participants. These challenges interact with the experiences of PwD in the work presented in the literature, which indicate physical and emotional exhaustion, lack of professional recognition, interpersonal difficulties, extensive working hours and mechanization of work, as situations that cause suffering (Pereira, Del Prette, & Del Prette, 2008) and often overlap with those aspects that generate pleasure, being crucial the resignification of the conceptions about disability and the processes of management and organization of work (Leão & Silva, 2012).

The records of the contents of the group indicate the development and strengthening of the affective bond between participants and coordinators, leading to the construction of relationships of trust and the possibility of sharing experiences related to work, to address anxieties and family conflicts, suggesting a welcoming environment and solidarity among the participants, which was considered fundamental for the maintenance of work experiences. The group was constituted as part of the social support network of the participants, being the health service and its professionals important allies in the process of social participation and access to information, as opposed to the situation of isolation in the home environment.

Concomitant to the group, as a powerful space for the exchange and strengthening of PwD on the theme, it was observed the need for more individualized designs that contemplated personal projects of work inclusion.

3.1.2 Implementation of individual support

Personal projects and unique needs required individual follow-up of 16 of the 22 participants, making 172 assistance meetings held at the local Basic Health Unit and, when possible, in the workplace.

During the group and individual meetings, there was identification of the vocational profile of the subjects, with recognition of potentialities and difficulties, many of them related to basic social skills. In these cases, rather than identifying the difficulties, the experience developed offered personalized interventions and support, such as follow-up interviews and the use of public transportation, allowing the recognition of journeys and commuting to those with little experience of mobility.

This support offered has a connection with the perspective of the Supported Employment regarding the identification and strengthening of the vocational profile through the localization of resources and equipment of education and improvement, as well as the concrete support for its use.

The support activities after the professional placement were done in a partial way, through support to the subjects in the groups and in the individual and family assistance. From the individual demands, the group debated and suggested strategies for managing stressful situations at work, such as the possibility of seeking help from co-workers, requesting a change of hours and other ways of coping with specific difficulties in interpersonal relationships.

In some cases, it was possible to monitor the inclusion of PwD through telephone contacts with Human Resources (HR) professionals. However, it was not possible to monitor the individual processes in person within the companies, and support was provided through participation in the group, individual and home visits. Thus, the other stages of Supported Employment usually developed in the workplace, such as the analysis of function and adaptation of activities, were not performed due to restrictions presented by the companies.

Although the vocational profile of the subjects has emerged throughout the process, it seems that the search for an opportunity was more influenced by the availability of vacancies than by the compatibility between personal interests and the vacancy in question, which in some way reproduces a broader labor market condition and the pressing need to generate income for the majority of the population, whether they are people with disability or not.

Given this condition, individual follow-ups were a permanent strengthening approach. Issues related to the process of adaptation and permanence at work, such as discontent, physical overload, interpersonal conflicts in the professional environment and the need for help to understand the working guidelines were treated. In the face of situations of dismissal, experienced by four people throughout the project, it was necessary to support the person and the family to deal with such a situation.

On-site systematic support, although a premise of Supported Employment and suggested by the executing team in the customized projects, was only possible for three of the participants and only in the first days of adaptation to employment, after negotiation with the contracting company. During the visits to the workplaces, there were attempts to adapt some activities to the condition of the worker, made impossible by the pre-established work routines with little flexibility according to the worker's rhythm. It was also sought to identify support from supervisors and colleagues and thus to sensitize them and inform them about the condition of the worker, addressing the potentialities and limitations of each young person and discussing alternative ways to accomplish the tasks. In this sense, the dialogue with the Supported Employment was again observed, especially with regard to the provision of support within the work environment, so that the support of the professional could be gradually replaced by that of other workers.

In general, there seems to have been a low degree of involvement of the companies beyond hiring, without the establishment of an effective partnership between company and the project of assistance. Concerned about responding to the Quotas Law, companies want to include PwD ready for work (Ribeiro & Carneiro, 2009), which seems to explain the hiring only of youngsters and adults with mild intellectual disabilities, who did not need structural changes in the workplace. There is no support program for the permanence of these workers in the companies. Thus the perception of the disability prevails as an attribute of the subject and not a contextualized construction by the social environment, which has not been modified to receive them.

In this sense, the challenges experienced by the participants in the workplace, resulting in the dismissals of four of them, indicate the expression of several gaps arising from the lack of access to the spaces of education and social participation throughout life, as well as the lack of sensitivity on the part of the companies, the resistance to adaptations in working conditions and traditional HR practices that employ PwD according to labor market rules such as schooling, productivity and competitiveness, ignoring the socially produced shortcomings already mentioned (Veltrone & Almeida, 2010).

In a study on educational institutions for PwD and companies in Curitiba (Paraná - Brazil), Araújo and Schmidt (2006) point out the lack of interest on the part of companies to seek support from specialized institutions and that they also do not have systematic programs for training and monitoring people at work, such as the Supported Employment. In spite of the discussion and legal prerogatives on the rights of PwD, this reality expresses and reinforces the distance between the PwD and the world of work and the belief that they would be incapacitated for work, forming a segregated collective from the whole society, homogenized by their insufficiency and disability and their reduced social value in comparison to the population with no disabilities (Ferreira, 2008).

Among the challenges faced was the supply of jobs seen by the participants as uncreative, with repetitive tasks and requiring predominantly physical efforts. The employees' requests for dismissal indicated that the work was not very pleasant.

The difficulty of building institutional partnerships with the companies seems to have been an important barrier for the project to fully achieve its objectives. The support team could have acted more effectively in the mediation of problems faced by workers in real working situations and relationships with colleagues. Given this impossibility, the alternative developed was the monitoring and strengthening of the participants in the group and individual assistance, which seems to have been one of the essential factors for the adaptation and permanence of the people who continued to work.

3.2 Family support

The sensitization and monitoring of families were also essential, informing them about resources and job vacancies in the region, as well as assisting them in accessing the necessary documents to benefit from such services and opportunities. We observed that the ten people who were included in work had family support. Among the unemployed young people and those who could not enter the job market (12 participants), five did not have this support. In general, feelings such as the fear that their children suffer prejudice and harassment, doubts about the ability to adapt to work, lack of transportation and preference for certainty of access to the Continuous Assistance Benefit, because some families live in extreme poverty and also need the financial support of the family member with disability.

The analysis of these follow-ups indicated that, despite the constant investment of the team, the presence of families in the discussions of the themes and the construction of the customized projects for their children fell short of what was expected. The understanding of this situation cannot be separated from the socioeconomic conditions of this territory and the real availability of families, considering the incidence of single-parent families and in a situation of poverty. Pantano (2014), when analyzing how contextual factors operate for the construction of disability in poor neighborhoods of Buenos Aires, Argentina, concluded that the situation of poverty

(...) may affect more negatively than disability itself as it affects issues sensitive to the dignity of persons and that, in general, these families do not experience disability as a complex situation in itself, since they live in situations which they consider to be more complex such as the lack of employment, housing, or access to education (Pantano, 2014, p. 153).

Although there are few studies on the role of the family in the process of inclusion in the work, all affirm that a family involved is a facilitator of the inclusion process (Neves-Silva et al., 2015; Riano-Galán, Rodríguez-Martín, García-Ruiz, & Álvarez-Arregui, 2014). As noted in the present study, the participants who were working relied on the help and positive recognition of family members. It was also observed that the families followed lived situations of social isolation with fragility in the networks of sociability. These data indicate the need for systematic articulation with family-centered territorial services, such as the Reference Centers for Social Assistance, which the project has attempted but with no real repercussions.

3.3 Community support

In view of the needs of the participating PwD and their families, and considering that the assistance experience addressed here has been developed within the framework of the Community Based Rehabilitation, a look at the territory and its potentialities seems to have been an important point.

The identification of actors related to the thematic of the PwD, with initial emphasis in the Health sector, by the very vocation of Primary Care, resulted in a partnership between professionals of the project and the local Basic Health Unit, as a reference in supporting families in relation to health care, understood as responses to the needs of social reproduction, which includes the dimensions of work, housing, consumption, ways of living and social relationships, and also determine the process of people's illness when considered their living conditions, income and social class (Campos & Bataiero, 2007).

During the project, the other Basic Health Unit professionals became aware of the importance of work for PwD and the fact that, although this is not a direct health-related demand, it is possible, in a network and in an interdisciplinary way, to develop actions related to this need.

The centrality of actions based on the needs of PwD and the provision of internal and external support, continuous and/or intermittent, again brings this experience closer to the Supported Employment methodology, which, adapted to the reality of each territory, could be an alternative to work access for people with more significant limitations.

An example of territorial and community basis would be the proposal of Urríes and Verdugo (2013). The authors, when presenting the alternatives for employment of the PwD in Spain, proposed the action of a job placement professional, a community employment specialist, someone who talks about the work needs of the PwD of a given territory, but also the needs of the companies. This professional would work on the basis of Supported Employment, defined as

(...) integrated community-based employment within common companies, for persons with disabilities who have traditionally had no possibility of access to the labor market, by providing the necessary support in and outside the workplace throughout their working life, and in conditions of employment as similar as the work and salary conditions of the other workers without disability in equivalent positions in the same company (Urriés & Verdugo, 2013, p. 393).

Supported Employment is carried out through the development of some phases, such as Commitment to the customer', 'Elaboration of Vocational Profile', 'Job search', 'Commitment to the entrepreneur' and 'Assignment of support inside and outside the work environment' and each of these phases comprises several activities. This proposal can also be extended to other groups in a situation of social disadvantage and that present difficulties in accessing the labor market (Urriés & Verdugo, 2013).

The discussion of Supported Employment in this context makes sense when it is articulated with the principles and guidelines of the Community Based Rehabilitation, which, since the 1990s, have stated that the PwD must have respected opportunities and rights, and consider the participation in the world of work as a key aspect for poverty reduction (World Health Organization [WHO], 2012). The 'Subsistence' component, which is part of the Community Based Rehabilitation conceptual matrix, is inseparable from the other components, expressing the interrelationship between health, education, access to work, the possibility of social participation and empowerment in a community.

3.3.1 Support network for inclusion of PwD in the world of work

The complexity of the needs identified by the project of assistance, in the individual and family level, and the territory itself, required the promotion of interlocution between different existing services, resulting in the creation of a Regional Forum to Inclusion Support in the World of Work, composed of three professional training institutions, two of which are for PwD, two public services to support the placement of PwD in the labor market, four companies, Basic Health Unit professionals from the region, the municipal and state education network, the Municipal Secretariat of the Person with Disabilities and Reduced Mobility, the Technical Health Supervision of the region covered by the Basic Health Unit, the Center for Training and Monitoring of Inclusion of the Municipal Secretariat of Education and the university. This forum started activities in 2013 and held semi-annual meetings until the end of 2016.

Networking had strong points and other less powerful ones, with vocational schools as the starting point for the inclusion of participants. However, most of the professional courses presented as criteria for admission, completion or attendance in High School, besides the accomplishment of knowledge test, requirements not compatible with the condition of the majority of the participants. Two young people started a vocational course in the community and were supported by the project during their stay, which was not enough for them to be able to complete it, given that the content could not be adapted nor it was possible to deal daily with the interpersonal dynamics. The fact that there are no specific training policies for work puts on the PwD the need to adapt at all times, at work and during training.

In 2014, a professional qualification program of the Federation of Industries of the State of São Paulo (known as FIESP) was presented to the Forum with the proposal to develop courses to favor the recruitment of PwD through the Apprentice Law (Decreto nº 5.598, 2005). Nine users accompanied by the project were indicated, and, although the program presentation publicly stated that the communities of PwD would be prioritized and that their vocational profiles would be met, only one participant with mild intellectual disabilities was called to begin the course. That is, even in this proposal there was no relaxation of criteria that could accommodate young people with more important limitations. The follow up of the only young person who participated in the program indicated that this had been a positive alternative for those who did not have professional qualifications and work experience. According to Santos (2011), the Apprentice Law shows that it is possible a State intervention in the processes of participation of the PwD in the world of work and that the partnership with companies and vocational schools should be expanded, especially for those with intellectual disabilities.

An example of the strength of the support network was the one offered by the Support Center for Workers in the city of São Paulo, which mediates job vacancies and companies interested in hiring PwD. Through the partnership with the Support Center for Workers, participants benefited from the services provided by the center, which resulted in hiring.

In the composition of this support network for the PwD and their families, the active presence of public institutions, representatives of the follow-up of PwD, such as the Municipal Secretariat of the Person with Disabilities and Reduced Mobility, of the health sector, such as the Technical Health Supervision; of inclusive education, such as the Center for Training and Monitoring of Inclusion of the Municipal Secretariat of Education and work, such as the Program for Support to Persons with Disabilities and Support Center for Workers and university, demonstrated that intersectoral dialogue is possible and necessary to deal with such a complex issue. The creation of local support networks for the inclusion of PwD at work has still been underdeveloped and studied, but it is a suggestion in the Community Based Rehabilitation program guidelines, to seek out information on the demands of the local labor market and to support people in the job search in this context (WHO, 2012).

The experience developed by the International Labour Organization (ILO) and the Government of Costa Rica (International Labour Organization [ILO], 2015) has resulted in guidelines for services in employment mediation for PwD, based on territorially localized networking. In this proposal, networks should be spaces for integration and articulation between local services in support of inclusion in work, vocational schools and universities, which promote the qualification of the youth in articulation also with Centers of Attention to PwD and other community groups.

In Brazil, there are few community projects and programs to support the social inclusion of PwD. Araújo, Escobal and Goyos (2006) described and discussed a community support program to the work of adults with intellectual disabilities, which is similar to this project in relation to the attempt to integrate different community services to plan, develop and evaluate actions to support the training of PwD for work, highlighting the challenge of maintaining integration between these services.

The analysis of the developed assistance project indicates that building networks from the common goal of supporting the inclusion of PwD in the world of work is fundamental. In this sense, according to Junqueira (2000, p. 39):

In networks, goals, collectively defined, articulate people and institutions that commit themselves to overcoming social problems in an integrated way. These networks are built between autonomous social beings, who share goals that guide their action, respecting the autonomy and differences of each member.

In general, this is not an institutionalized proposal in the different services, which still operate in a sectoral, compartmentalized and vertical logic. Thus, one of the strengths of the network created was the exchange of information between services, PwD and family, in order to stimulate cooperation and reciprocity among members. The fundamental elements of the network, such as values and shared goals and cooperation among members, were built, albeit in an incipient way.

Although the purpose of the network was to think and support proposals to promote the inclusion of PwD at work, there were distinct perceptions about disability and social participation, with the prevailing idea that the limitation is still the responsibility of the PwD. Therefore, there were few possibilities in the companies to promote changes and adaptations in learning and work processes, as well as in the vocational school, where two youngsters could not finish their course.

We also realize that it is also essential to discuss values such as non-discrimination, equal opportunities and the promotion of equity among the partner services, considering that people with more important limitations did not have the opportunity to participate in qualification courses, remaining out of work.

The cooperation between the participants of the network was due to the effort of both the inclusion project and the mentioned services, and during the Forum meetings there were collective actions with information circulation, event organization and mediation between services to direct people to work opportunities and qualification.

In this sense, it reaffirms the importance of the existence of a community project to support inclusion in the world of work to trigger processes and induce the creation of support networks, bringing together services and professionals. The Forum was positively recognized by the Municipal Secretariat of the Person with Disabilities and Reduced Mobility, being the only forum on the subject in the municipality.

4 Final considerations

Considering the centrality of work in the process of social inclusion and the existence of several legal frameworks that ensure the right of PwD to work, the existence of a gap between the right and the fact has been perpetuating historically in this and other fields, such as access to health and education.

Public policies to stimulate the work of the PwD, such as the Quota Law and the Apprentice Law, still respond timidly to their purposes, partly because of the lack of consideration of the various gaps in the previous educational and vocational training processes of the PwD, especially those living in peripheral regions of the city, in territories that lack access to goods and services.

Inclusion at work, rather than mere hiring, requires confronting the physical, attitudinal, economic and cultural barriers that keep PwD at a situation of disadvantage, in order to construct paths to elaborate the social place of worker in an excluding labor market by definition.

The experience on which this study has focused indicates actions at different levels: individual, collective, family and community, proposing personalized projects and procedural supports that transcend the simple job placement, contributing to the recognition of the worker role and dialoguing strongly with the methodology of Supported Employment and Community Based Rehabilitation.

The support group was an important strategy to nurture participants, provide learning experiences, and share information about the world of work. It also contributed to breaking the situation of social isolation, to make social and affective exchanges and to recognize the services of the territory, which became part of the support network for people and their families. As well as the individual assistance, the group seems to have been a fundamental support for the maintenance of the PwD at work, in a process of promoting autonomy and personal strengthening of the participants.

Individual and family support was also essential for maintaining work experience. It was possible to observe the potency that the individual support promoted to the participants, initially little knowledgeable about subjects related to the world of work. However, it should be pointed out the low degree of corporate responsibility in the process of insertion in the work that, allied with the lack of effective intersectoral policies of support, reaffirm the place of the disability as an individual issue, and it is up to the individual and his/her relatives to make efforts so that the process of labor inclusion is successful.

The creation of a network of support sought to make possible the mutual recognition of the services, professionals of the territory, families, that is to say, of the network itself, and as such, this dialogue presented strengths such as the public services of professional placement and points to be strengthened, such as the vocational schools, which were still unprepared to receive PwD. These aspects indicate ways for the operationalization of policies based on quite singular and procedural constructions that call for multisectoral arrangements.

The study was limited to analyzing the approach built from the singularities present in the territory of a Basic Health Unit. We believe that this analysis contributes to the understanding of the complexity of the factors that affect the possibilities of inclusion in the world of work, in which no element, whether individual, family or collective, per se explains the contracting and the permanence or not of the job.

We recognize the need for other approaches that contemplate the perception of the PwD and their families about the process developed, as well as different social and cultural realities, from other social assemblages. We also indicate the importance of follow-up studies that can evaluate the long-term impact for the participants, whether or not they are employed.

While the challenges are many, the support provided to PwD and their families presented here have resulted in successful individual and collective experiences that indicate the possibilities of community and network intervention to deal with the issue in order to produce sensitive, complex and concrete attention to encourage the social participation of PwD and access to work.

• This work received support from the University of São Paulo - USP, through grants from the Programa Unificado de Bolsas de Estudos (Unified Scholarship Program) for undergraduate students. We thank the scholarship students Aline Yukari Oda Fugimoto, Ana Luiza Palhares Sergio, Ana Paula Nishino Machado, Caroline Ferreira Jorge, Edeli Lima, Lorena Schmitt Pássaro, Priscila Florentino, Sara Soares, Talita D. Tangerino, Tatiane Ambar and Yurika Nakano, for the commitment and dedication.

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Publication Dates

• Publication in this collection
  Oct-Dec 2018

History

• Received
  15 Feb 2018
• Reviewed
  30 Mar 2018
• Accepted
  16 May 2018