Abstracts

ARTICLE REVISION

Policies for the inclusion of disabled people: limits and possibilities

Política de inclusión del portador de deficiencia: posibilidades y límites

Inacia Sátiro Xavier de França^I; Lorita Marlena Freitag Pagliuca^II; Rosilene Santos Baptista^III

^IPhD, Full Professor of the Nursing Department, Universidade Estadual da Paraíba (UEPB)- Campina Grande (PB), Brazil

^IIPhD, Full Professor of the Nursing Department, Universidade Federal do Ceará (UFC)– Fortaleza (CE), Brazil; Researcher with the Brazilian Scientific and Technological Development Council (CNPq)

^IIIMSc, Full Professor of the Nursing Department, Universidade Estadual da Paraíba (UEPB)- Campina Grande (PB), Brazil

^{Corresponding Author} Corresponding Author: Inacia Sátiro Xavier de França R. Sérgio Rodrigues de Oliveira, 139 Alto Branco - Campina Grande - PB Cep: 58103-074 E-mail: isxf@oi.com.br

ABSTRACT

This study aimed to investigate the impact of the National Policy for the Integration of Disabled People in Brazil and to analyze which aspects of this policy are evidenced in academic publications. Data were collected in indexed databases and academic bibliography. The sample composition criteria permitted the inclusion of texts on social inclusion and public inclusion policies. Data were analyzed according to Thematic Content Analysis. It is concluded that disabled people have conquered a policy that guarantees access to goods and services, but face difficulties to achieve inclusion in education and the job market, due to the lack of education, qualification and resistance strategies by companies that refuse to hire them. The academic discourse highlights social inclusion problems, prioritizing rights to education, jobs and health care, to the detriment of rights related to culture, tourism and leisure.

Keywords: Health public policy; Disabled persons; Handicapped advocacy

RESUMEN

Se busca investigar el impacto de la Política Nacional para la Integración de la Persona Portadora de Deficiencia en Brasil y qué aspectos de esa política están evidentes en el discurso académico. Los datos fueron recolectados en bases indexadas y en bibliografía académica. Los criterios para la composición de la muestra permitieron la inclusión de textos sobre inclusión social y política estatal de inclusión. Los datos fueron analizados según el Análisis de Contenido Temático. Se concluye que los portadores de deficiencia conquistaron una política que les asegura el acceso a bienes y servicios, pero encuentran dificultades de inclusión en los campos de la educación y del mercado laboral debido a la poca instrucción, a la falta de calificación y a las estrategias de resistencia por parte de las empresas, que se omiten de contratar a esa fuerza de trabajo. El discurso académico se encarga de elucidar los bloqueos a la inclusión, priorizando aspectos de educación, mercado de trabajo y asistencia a la salud en detrimento de aspectos relativos a la cultura, turismo y entretenimiento.

Descriptores: Políticas públicas de salud; Personas con discapacidad; Defensa de los minusválidos

INTRODUCTION

Currently, Brazil experiences a rise in social movements that demand the use of rights that have been conquered, but are not always respected, nonetheless. The distortions regarding the non-respect to rights established in specific legislation often occur due to the social practice founded on utilitarianism. The essence of utilitarianism is to ensure what is best for the majority, even if that means than a minority becomes excluded from the benefits of any social actions. This capitalist rationale sustains the process of social exclusion of people placed into poverty. The disabled people are included in this group of people, who, in addition to facing the consequences of a utilitarian ideology, are also exposed to attitudinal barriers.

The mobilization of many social segments due to the demands from people with disabilities has contributed with their human development. This allowed for an advance in the process of politicizing theses social subjects. Thus, the State has assumed the civic responsibility and ethical obligation to develop public social protection policies with a view to meet the demands of this specific social segment.

Thanks to social movements and the legal protection from the National Coordination for the Integration of People with Disabilities (Coordenação Nacional para Integração da Pessoa Portadora de Deficiência), these people conquered the National Policy for the Integration of People with Disabilities (Política Nacional para a Integração da Pessoa Portadora de Deficiência - PNIPPD) in decree number 3.298/99, sanctioned on December 20 1999⁽¹⁾. This legal postulate comprises a series of normative orientation that aim to ensure that these subjects receive their full rights related to health, education, housing, rehabilitation, work, culture, tourism, and leisure.

However, there are reports in literature that people with disabilities complain about the difficulties to actually benefit from the rights ensured by Decree 3298/99; that people with physical disabilities get jobs easier than others, and that both the plural society and the people with disabilities understand social inclusion as "inclusion in work"⁽²⁾.

Authors state that, in order to conquer concrete equality, people with disabilities need their personal development to be ensured just as well in arts and languages, formal and informal sports, leisure, and tourism⁽³⁾.

In terms of health practices, authors agree that the nurses should have an active role in the rehabilitation team, developing health education activities to help rehabilitees to assume self-care and develop a critical transitive consciousness to facilitate social inclusion⁽³⁾. Other authors state the relevance of nursing research to focus on people with disabilities and their relatives as well as on the form that these professionals prepare themselves for delivering scientifically-evidenced health care⁽⁴⁾.

Based on the ideas presented above, it is understood that the public policy of social inclusion of people with disabilities is an instrument with long-term effects, involving many actors in the decision-making process, and requires implementation, execution, and evaluation.

After almost one decade of the sanction of Decree number 3.298⁽¹⁾, due to the current Brazilian situation, one question arises: Did the PNIPPD generate the targeted impact, capable of guaranteeing that these subjects will actually occupy their social position? This inquiry guided the present study, which had the purpose to study the impact of the PNIPPD in this social segment in Brazilian territory as well as to identify what aspects of this policy are evident in the academic discourse.

METHODS

This is a literature review on the object "the policy of social inclusion of people with disabilities". The keywords public policies, social inclusion, disabled, and citizenship were used to search for articles in the LILACS, MEDLINE, COCHRANE, SCIELO databases, in addition to academic literature related to the experiences of people with disabilities. The term citizenship was used considering the concept of making use of the State civil and political rights. Of the articles, 135 addressed public policies, 18 were about social inclusion, 132 about disabled people, and 261 about citizenship.

Inclusion criteria were adopted to select the complete articles that would compose the studied sample. According to the criteria, the texts should be a research article published in a national or international serial, be written by a nurse based on a thesis or dissertations, be disseminated by an institution with the duty of delivering care to people with disabilities, and have been published between 2000 and 2006. The time section is justified because the decree number 3298 was sanctioned on December 20 1999⁽¹⁾.

The critical analysis of the texts took into consideration the fact that the ideas exposed by the authors should answer the following guiding question: Did the PNIPPD generate the targeted impact, capable of guaranteeing that these subjects will actually occupy their social position? Thus, the sample was composed by texts that had as their theme the social inclusion of people with disabilities^(2-17), the specific legislation for the social inclusion of these subjects⁽¹⁾, and health care^(4,15-16). The articles' focus should be on the respect given to the universality and equity of actions in the Single Health System⁽¹⁴⁾. Finally, text that supported the analysis were selected^{(5-6,11-12,18)}. To synthesize the data, thematic Content Analysis was used⁽⁵⁾. The texts were read twice to apprehend and highlight the central ideas. The excerpts were continuously grouped in thematic categories, which were then analyzed by the researchers.

Sociodemographic profile of people with disabilities

In agreement with the Year 2000 Census⁽⁶⁾ and the results from a study recently performed in Brazil⁽²⁾, there are 24.5 million people with some kind of disability. From those, 2.0% are employed and 52% are inactive. Of those who work, 5.6 million are men and 3.4 million are women. As to income, 4.9 million make up to two minimum salaries, 48% are the head of the family, and 29% live in extreme poverty^(6-7).

The urban area houses 19.8 million of these people, and the rural area 4.8 million. It is estimated that, of this social segment, 13,179,712 people are women and 11,420,544 are men. Of all disabled people in the age group of 7 to 14 years, 88.6% are in school. In the group of disabled people with 15 years of age or more, the illiteracy rate is 72%, and 27% have never been in school^(6-7).

Regarding their race, they are white (51.1%), mixed/brown (39.8%), black (7.5%), and indigenous (0.5%). As to their civil status, 35% are single and 21.8% are married. Regarding social security, only 17% are contributors. In terms of religion, the individuals with disabilities reported their beliefs in the following order: catholic (73%), evangelic (17%), spiritualist (1.3%), followers of an oriental religion (0.86%), followers of an Afro-Brazilian belief (0.3%), and 6% do not follow any religion^(6-7).

Regarding the participants' geographic distribution, most live in the Northeast, mostly in the states of Paraiba (18.7%), Rio Grande do Norte (17.6%), Piauí (17.6%), Pernambuco (17.4%), and Ceará (7.3%). The smallest part lives in the Southeast, in the states of São Paulo (11.3%), Roraima (12.5%), Amapá (13.2%), Paraná (13.5%), and Distrito Federal (13.4%)^(6-7).

The citizens disabilities are physical (48%), motor(22.9%), hearing (16.7%), mental (8.3%), and visual (4.1%). The lack of health care during pregnancy is the main cause of disabilities. The precarious health care delivered to pregnant women is responsible for 16.8% of cases, followed by genetic problems, with 16.6%^(6-7).

The academy's voice about the social inclusion of people with disabilities

The movement for the education of people with disabilities first appeared in the 16^th century, when doctors and educators challenged the concepts of that era and developed education activities with individuals institutionalized in asylums and hospices. Education was grounded on tutorial bases, and they were direct teachers to those students. Special classes at regular schools emerged in the 19^th century simultaneous to the evolution of asylums, the social demand for mandatory education, and the incapacity of schools to take responsibility for the learning of every student⁽⁸⁾.

After the World War II, a rehabilitation industry was established to attend mutilated war victims. This movement, together with the ongoing social demand, was responsible for, until the 1970s, the segregated regime for children and youth who needed special education, because of the belief that they would be better off in separate environments⁽⁸⁾.

The proposal of scholar integration gained strength as of the 1960s, with the social movements toward human rights and scientific evolution. These movements produced teaching ways that for long had not even been considered educational and pointed out the benefits of inclusive education, for both the special children and others. This means cost reduction for the public budget due to the growth in the specialized work market, public interest, service suppliers, researchers, parents and people with disabilities toward the integration of people with disabilities in the regular community services^(8-9).

In Brazil, the movement toward integration took place in the 1970s⁽⁹⁾, when the paradigm "normalization" emerged in the worldwide context. This ideology sustained special education in the form of scholar integration until the early 1990s. As of this last year, the discourse also addressed the defense of inclusive education⁽⁸⁾. This new order was given by the constitution and Law of Education Guidelines and Bases, which makes municipalities take responsibility for child education, and federal departments are responsible for establishing the standards of the service^(9-11).

Research results show⁽¹²⁾ that from 1996 to 2003 there was a 242% rise the enrolment of highly skilled gifted children, 210% for students with disabilities, 200% for students with visual impairment, 165% for students with multiple disabilities, 108% for students with intellectual impairment, 82% for students with listening impairment, and 77% for students with syndromes.

However, the access to special education in Brazil is still very small, because most enrollments are concentrated in the private system, more specifically in philanthropic institutions. The few students are not receiving proper education due to the lack of qualified personnel or a generalized lack of resources. Furthermore, there is evidence of a disregard from the government, a tendency of privatization, and a slow evolution in the offers of enrollment, compared to the existing demand⁽⁸⁾.

Regarding inclusion in the work market, people with disabilities face the main consequences of the globalization process, such as a smaller number of job opportunities, unemployment, and a rise in informal work. As far as people with disabilities are concerned, the PNIPPD forces companies to respect the employment quotas for the disables, which is 2% for companies with up to 200 employees, 3% for those with 201 to 500 employees, 4% for those with 501 to 1000 employees, and 5% for companies with over 1000 employees⁽¹⁾.

The employability rate for people with disabilities in companies with up to 100 employees is 2.7%. Those with 201 to 500 employees absorb 2.9%. Companies with 501 to 1000 employees hire 4%, while those with more than 1000 employees hire 3.6% of people with disabilities. Correlating the quotas with the hiring percentages and the number of people with disabilities in the countries, 518 positions are still needed⁽⁷⁾.

The difficulties involved in hiring a person with disabilities are mostly due to education itself, and companies prefer to hire people with listening, physical, or visual impairment because these disabilities have the most resources developed and tested to promote the formal learning for these individuals⁽¹³⁾.

The business work market absorbs, selectively, the work force of people with physical disability to the detriment of people with any other kind of impairment, offering low salaries and restriction to some worker rights. This makes these people struggle constantly for the material conditions to survive⁽²⁾.

Besides the people with disabilities who are on the search for a position in the work market, 52.4% of this population lives with one minimum salary, since the Brazilian legislation ensures this benefit to incapable people from families with a per capita income below R$60.00. Thus, despite the legal protection, people with disabilities are disadvantaged in the work marked because few have the required education and/or qualification. Moreover, those who are employed receive R$100.00 less than the other workers, despite working a similar shift⁽⁷⁾.

In terms of health, the PNIPPD ensures theses people have access to preventive, curative, and rehabilitation actions. Besides treatment, these people are also guaranteed to receive prostheses, collecting bags, and auxiliary material, in addition to any medication that contributes with their clinical and functional stability and help limiting their disability, as well as in their functional reeducation, and in the control of their lesions that generate disabilities, and psychological guidance⁽¹⁾.

The PNIPPD respect the principles of universal access, equitable and comprehensive care, as recommended by the 1988 Federal Constitution, by the Single Health System, and by the Operational Health Care Norm (NOAS SUS 01/2002)⁽¹⁴⁾.

In this context, nursing professionals deliver care for health promotion, protection, and recovery in people with disabilities, and worry about analyzing their physio-pathological conditions, designing technologies to help in their rehabilitation, and build educational tools in the field of sex education⁽¹⁵⁾. Furthermore, they study the possibility of forming skilled human resources to help these people to become socially included⁽³⁾.

Possibilities and limits of the national policy for the integration of people with disabilities

There is no doubt that the PNIPPD is a breakthrough in the history of these subjects' movement. This strategy legitimates both the subjects' demand as well as the practice of administrators and professionals involved in the process of preparing and rehabilitating people with disabilities. Thanks to the sensitization of a significant part of the society, people with disabilities find support in social movements, forums, associations, and non-governmental organizations.

The advances in sciences and technology have made provided significant anatomical-physiological improvements that enhance their quality of life. Health care professionals have been concerned in delivering appropriate care to these individuals since it is understood that acquiring skills and competencies in rehabilitation adds values to the practice of health care and allows for creating projects for health promotion, disease prevention, and rehabilitation⁽¹⁶⁾.

The capitalist ideology moved the concept disabled, which was once understood as being an incapable person, to an understanding of being a limited and disadvantaged person. However, the development of this policy is affected by intervenient factors, since people with disabilities are subjects included in the medical, economic, psychological, and pedagogic discourses, which means the emerging special education subject is likely to recognize the institutional practices.

This representation of people with disabilities is configured in the nomenclature that is receives, according to the type and degree of the disability, thus these people are referred to as capable or incapable, according to economic interests, since that nomenclature meets the requirements of the capital. Hence, it is learned that while 32% of people without disabilities are without jobs, 52% of disabled people are unemployed⁽⁷⁾.

The representation of people with disabilities is also often configured under the aegis of pedagogy and stigmatization, when these individuals are placed in an exclusion/inclusion situation at schools that do not have specialized teachers or the necessary instruments for their educational development. This type of situation trigger their quitting school and contribute to the increase in low-education, or non-education rates. This is observable in the report of a study performed in Brazil - among the 24.5 million people with some kind of disability, 27.61% have no education, against 24.6% of people without disabilities⁽⁷⁾.

CONCLUSION

To think about public policies for the inclusion of people with disabilities implies making a careful reflexive reading of various socio-political-economic and cultural factors that guide and limit the actions of that policy.

This study shows that people with disabilities have achieved relevant benefits after the implementation of the PNIPPD, especially in terms of the inclusion in education and work. There have also been improvements to the social relationships and a reduction in the stigma that is imposed on them.

The access to health services occurs in the same patterns of delivery to the plural society, with an increase in the access to technical help, which corresponds to the acquisition, with no cost, of prostheses and other necessary technologies.

This analysis shows that, according to the various discourses about the inclusion of people with disabilities, it is understood as a process of educating and qualifying for the work market. This situation implies that people with disabilities experience an ambivalence they are neither included nor excluded. This is because to occupy a social position implies having the capacity of self-development. It is also dependent on the dominant modes of production in a specific social formation and on the mechanism of the ideological discourse that is in charge of separating the thought about what needs to be done to establish the subjects' places and positions in the structure of that specific social formation. This justifies why in the corpus of this study none of the texts found addressed the inclusion of these subjects in the fields of culture, tourism, and leisure.

Received article 08/08/2007 and accepted 15/10/2007

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