Abstract

The present study aims to elucidate the main aspects of recent data production regarding people with disabilities in Brazil. In its first section, a documentary and a bibliographic search is employed to unveil the influence of debates surrounding conceptions of disability concerning statistical information surveys. Subsequently, parameters for the identification of individuals with disabilities are presented in the 2019 National Health Survey (NHS), the 2022 Continuous National Household Sample Survey (Continuous PNAD), and the 2022 Demographic Census. Although these surveys are conducted by the Brazilian Institute of Geography and Statistics (IBGE) and adhere to the recommendations of the Washington Group on Disability Statistics (WG), they employ distinct questionnaires, requiring careful attention from the users of this data. In the third section, sociodemographic indicators generated from the microdata of the 2019 NHS and the 2022 Continuous PNAD are analyzed in order to elucidate differences between them and contemplate the adoption of a cutoff point to define people with disabilities. It is observed that individuals with more severe difficulties are the ones facing greater challenges in accessing education and the labor market.

Key words:
People with disabilities; Health services research; Demographic surveys; Censuses

Introduction

Statistical data about people with disabilities offers underlying information for a variety of public policies; consequently, changes in their methodology consistently generate doubts and intense discussions. The present study aims to contribute to elucidate the main aspects of the recent trajectory of data production about people with disabilities in Brazil, facilitating the understanding and use of this information by academics, administrators, and the public in general. There is a growing demand for this kind of data in the national scenario, reinforced by international mechanisms and instruments, like the 2030 Agenda for Sustainable Development.

In the first section, this article provides the records of the first meetings of the International Statistics Congress, revealing pioneering recommendations for data collection on people with disabilities. Moreover, this section shows the influence of debates regarding the definition of disability, upon this statistical production, with emphasis on official Brazilian organizations.

Next, the article presents the main aspects of the identification of people with disabilities and their living conditions published in the three most recent surveys conducted by the Brazilian Institute of Geography and Statistics (Instituto Brasileiro de Geografia e Estatística - IBGE): The National Health Survey (NHS) from 2019, the National Continuous Household Sampling Survey (Pesquisa Nacional por Amostra de Domicílios Contínua - Continuous PNAD) from 2022, and the 2022 Demographic Census.

Taking into consideration that data from the 2022 Demographic Census about people with disabilities has not yet been released, the third section focuses on clarifying the differences between the results of the 2019 NHS and the 2022 Continuous PNAD. For that purpose, resorting to the microdata, we produced population indicators by age, sex, skin color or race, and the level of difficulty to perform tasks. At this point, we also included the suggestion of having a cutoff line for people with disabilities, since the people with more severe difficulties are those who face more restrictions in access to education and to the job market. Finally, we sought to present potentials, limitations, and gaps in the analyses produced concerning the aforementioned surveys.

Conceptions regarding disabilities and their influence on statistical production

In September 1853, in Belgium, the first meeting of the International Statistics Congress took place, with the purpose of harmonizing, between countries, the methods of data collection and publication of information, making statistics comparable¹1 Levi L. Resume of the Statistical Congress, held at Brussels, September 11th, 1853, for the Purpose of Introducing Unity in the Statistical Documents of all Countries. J Stat Soc London 1854; 17(1):1-14.. In that opportunity, when populational data was discussed, there was the recognition of a need to investigate the presence of people with disabilities in households. The first meeting of the Congress was attended mainly by authorities from European countries, with the additional presence of the United States and Egypt. From the second meeting on, representatives of Latin-American countries began to participate in the Congress¹1 Levi L. Resume of the Statistical Congress, held at Brussels, September 11th, 1853, for the Purpose of Introducing Unity in the Statistical Documents of all Countries. J Stat Soc London 1854; 17(1):1-14.^,22 Levi L. Resume of the Second Session of the International Statistical Congress Held at Paris, September, 1855. J Stat Soc London 1856; 19(1):1-11..

It is possible to identify, in records of sessions of the Congress, that recommendations regarding the production of information about people with disabilities differed significantly from current discussions on the theme. For instance, the current article uses the expression “people with disabilities”, however, the documents of those meetings used terminology that was accepted at their time. People discussed how to discover the causes of mental disabilities in order to estimate the possibilities of cure²2 Levi L. Resume of the Second Session of the International Statistical Congress Held at Paris, September, 1855. J Stat Soc London 1856; 19(1):1-11.. There also was a sense of the need to account for people who constituted a burden for the wealth of the countries and for work productivity³3 Brown S. Report on the International Statistical Congress, Held at Vienna, September, 1857. J Stat Soc London, 1858; 21(1):1-17.. Two centuries have passed, and not surprisingly, differences are noticeable.

The conceptions regarding disabilities have changed over time in the production of statistics. In terms of public policies, artistic representations and other forms of culture and knowledge production reflect that trajectory. A brief approach to such conceptions, also known as “models of disability” helps, therefore, to understand the evolution of population surveys.

Those who study disabilities - delving only into European history, we should say - identify a moral model that considers disabilities from the point of view of religious beliefs. According to this view, disability is a sign of sin, of divine punishment; it is a reason for shame and, at most, for acceptance⁴4 Goodley D. Disability studies. An interdisciplinary introduction. Los Angeles, London, New Delhi, Singapura, Washington DC.: SAGE; 2011.. Although the moral model is considered the oldest, there are actually people who defend it publicly even today. This is something important to acknowledge, without giving the impression that the advent of new models implies supremacy over previous models.

The development of humanist philosophy and progress in science and medicine favored the diffusion of a medical model of disability, moving away from mystical and supernatural beliefs. In the view of the physician, disability is understood as a strictly biological phenomenon, a pathological deviation from the standard body, which guides interventions geared toward cure and normalization⁴4 Goodley D. Disability studies. An interdisciplinary introduction. Los Angeles, London, New Delhi, Singapura, Washington DC.: SAGE; 2011..

The context in which the first meetings of the International Statistics Congress took place would not be complete without mentioning the transition to industrial capitalism. The existence of people with disabilities was understood, in religious or medical terms, as something negative, a tragedy at both the family and individual levels. Nonetheless, in the pre-industrial period, the disabled were inserted in the midst of rural work and domestic production. Industrialization, however, moved work to the cities and brought new parameters of speed and productivity in environments that were physically hostile, making the participation of people with disabilities unfeasible in the productive process⁵5 Finkelstein V. Disability and the helper/helped relationship [Internet]. 1981. [cited 2024 jan 22]. Available from: https://disability-studies.leeds.ac.uk/wp -content/uploads/sites/40/library/finkelstein-Helper- Helped-Relationship.pdf
https://disability-studies.leeds.ac.uk/w... ^,66 Gleeson BJ. Disability studies: a historical materialist view. Disabil Soc 1997; 12(2):179-202..

Such guidelines, aligned with the debates held at the International Statistics Congress, materialized into the production of statistics in the nineteenth century and the first half of the twentieth. People are counted as disabled only by the characteristics of the body - as an individual and biological problem - and with the purpose of registering their existence, rather than evaluating their living conditions and social participation.

In Brazil, that phase began in 1872, with the first General Census of the Empire, and continued until the 1940 Demographic Census. In that period, the changes in the ways of identifying people with disabilities in the population were restricted to a larger or smaller number of investigated body characteristics, to the terminology and to methodological matters related to the application of data collection questionnaires⁷7 Botelho L, organizador. Censo 2021. Experiências na América do Sul. Rio de Janeiro: Sindicato Nacional dos Trabalhadores do IBGE - ASSIBGE Núcleo Chile; 2020.^,88 Botelho L, Porciuncula K. Os desafios para a produção de indicadores sobre pessoas com deficiência: ontem, hoje e amanhã. In: Simões A, Athias L, Botelho L, organizadores. Panorama nacional e internacional da produção de indicadores sociais. Grupos populacionais específicos e uso do tempo. Rio de Janeiro: IBGE; 2018. p. 116-169.. Blindness and deafness were the only characteristics present in all of the surveys from the period, and expressions like “retarded”, “physical defect”, and “crippled” were often used. After the 1940 Census, the IBGE only went back to gathering information regarding people with disabilities in the 1980s.

In the second half of the twentieth century, activists with disabilities in the United Kingdom created the social model of disability. Its purpose was to define disability as a social phenomenon of collective responsibility. Disability, therefore, would be a situation resulting from the imposition of barriers that restrict the participation of people with bodies that are not consonant with standards (or impairments) in the various dimensions of social life⁹9 UPIAS. Disability Alliance. Fundamental Principles of Disability [Internet]. 1975. [cited 2020 set 9]. Available from: https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/UPIAS-fundamentalprinciples.pdf
https://disability-studies.leeds.ac.uk/w... .

Since then, the social model has influenced not only studies about disabilities, but also international normative instruments, such as the International Classification of Functioning, Disability, and Health and the International Convention on the Rights of Persons with Disabilities¹⁰10 Degener T. A human rights model of disability. In: Blanck P, Flynn E, editors. Routledge Handbook of Disability Law and Human Rights. London: Routledge; 2016. p. 31-49.. Laws and public policies began to define and propose mechanisms to evaluate disabilities in consonance with the concept proposed by this model, although they incorporated additions and criticisms in the decades that followed. This model is clearly not generalized, uniform, and harmonic. In the same country, there might be norms and practices inspired by different models of disability.

Statistical production kept up with such trends. More emphatically, international recommendations to the statistics institutes, developed mainly in the realm of the United Nations (UN) , began to define disability as a phenomenon not only restricted to the body, but also related to the place where one lives⁷7 Botelho L, organizador. Censo 2021. Experiências na América do Sul. Rio de Janeiro: Sindicato Nacional dos Trabalhadores do IBGE - ASSIBGE Núcleo Chile; 2020.^,88 Botelho L, Porciuncula K. Os desafios para a produção de indicadores sobre pessoas com deficiência: ontem, hoje e amanhã. In: Simões A, Athias L, Botelho L, organizadores. Panorama nacional e internacional da produção de indicadores sociais. Grupos populacionais específicos e uso do tempo. Rio de Janeiro: IBGE; 2018. p. 116-169.. Hence, identification of people with disabilities should be crossed with information related to education and work, among other areas, with the possibility of revealing the conditions and limitations of social participation. The efforts to improve international comparability of statistics resulted in the foundation of the Washington Group on Disability Statistics (WG). The WG has developed instruments for data collection in household surveys, used by countries all around the world.

Therefore, disabilities ceased to be investigated only in respect to pathologies or missing limbs, and the issue began to consider what an individual is capable of doing or not, given the assistive devices that they have. At the same time, difficulties in performing tasks and activities began to be assessed in terms of intensity and frequency, rather than with binary answers like “yes” and “no”.

In Brazil, the censuses of 2000 and 2010, conducted by the IBGE, were the first surveys that were inspired, to a great extent, by these new recommendations. On the other hand, the National Household Sampling Survey from 1981, the 1991 Demographic Census and the NHS from 2013 used questionnaires based on the medical model of disability.

The analysis of data regarding people with disabilities must be based, therefore, on the understanding of the dimensions investigated by the survey that is to be used. In other words, by asking a question such as “How does Survey ‘X’ identify people with disabilities?” Later in the article, such questions will be answered for the case of the most recent surveys: the NHS from 2019, the 2022 Demographic Census, and the 2022 Continuous PNAD.

Methodology to identify people with disabilities in recent Brazilian statistical production

To identify people with disabilities, the 2019 NHS, the 2022 Continuous PNAD, and the 2022 Demographic Census had their questionnaires built based on the short list of questions about disabilities¹¹11 Washington Group on Disability Statistics. The Washington Group short set on functioning - enhanced (WG-SS Enhanced) Brazilian Portuguese translation [Internet]. 2020. [cited 2023 jun 11]. Available from: https://www.washingtongroup-disability.com/fileadmin/uploads/wg/Documents/WGShort-Set-Enhanced-Brazilian-Portuguese-translation-v2020-June-23.pdf
https://www.washingtongroup-disability.c... from the WG¹²12 Instituto Brasileiro de Geografia e Estatística (IBGE). Pesquisa Nacional de Saúde de 2019 (PNS) - ciclos de vida. Rio de Janeiro: IBGE; 2021.^,1313 Instituto Brasileiro de Geografia e Estatística (IBGE). Pessoas com deficiência. Pesquisa Nacional por Amostra de Domicílios Contínua de 2022 (PNADc). Rio de Janeiro: IBGE; 2023.. This instrument suggests questions regarding the difficulty to see, to hear, to walk, or to climb stairs; to memorize and concentrate; to perform self-care, at a scale of difficulty that ranges from “no difficulty at all” to “not able at all”. However, such factors as the objectives of the surveys, budget availability⁷7 Botelho L, organizador. Censo 2021. Experiências na América do Sul. Rio de Janeiro: Sindicato Nacional dos Trabalhadores do IBGE - ASSIBGE Núcleo Chile; 2020., among others, influenced their production, hence the differences between the respective questionnaires, mainly in terms of the functions investigated, as we will describe later in this section.

In the 2019 NHS, conducted by the IBGE, in cooperation with the Ministry of Health, disabilities were investigated in Module G of its single questionnaire. Besides questions from the Short list of questions about disabilities for hearing, sight, and mobility, there were also categories from the Expanded set of questions about functionality¹⁴14 Washington Group on Disability Statistics. The Washington Group Extended Set on Functioning (WG-ES) [Internet]. 2020. [cited 2023 jun 11]. Available from: https://www.washingtongroup-disability.com/fileadmin/uploads/wg/Documents/Questions/Portuguese__Brazil_.pdf
https://www.washingtongroup-disability.c... , also produced by the WG, which cover difficulties in the use of the upper limbs (strength and coordination) and the use of assistive devices, prior to inquiry concerning difficulties to perform functions. For instance, before asking about vision difficulties, the study checked whether the person regularly wore specific devices, such as glasses or lenses, or used canes or guide-dogs to manage permanent vision problems. Regardless of the answer being positive or negative, the questionnaire followed the flow for the question about difficulties.

The 2019 NHS identified people with limitations in mental/intellectual functions as well. This category, however, was approached in a manner different from the other, emphasizing the causal relationship between mental/intellectual limitations and consequent difficulties in areas such as communication, self-care, work, and education. The inclusion of this question was motivated by the intention of maintaining some comparability with previous surveys, such as the 2010 Demographic Census, which pursued a similar approach.

In the 2019 NHS, a cutoff of two years of age was established, and the questionnaire was adapted for children aged 2 to 4 years, following the parameters of the Module on Child Functioning¹⁵15 Washington Group on Disability Statistics/UNICEF. Child Functioning Module (CFM) - Ages 5-17 years [Internet]. 2020. [cited 2023 out 13]. Available from: https://www.washingtongroup-disability.com/fileadmin/uploads/wg/Documents/Washington_Group_Questionnaire__5_-_WG-UNICEF_Child_Functioning_Module__ages_5-17_.pdf
https://www.washingtongroup-disability.c... elaborated by the WG with the United Nations Children Fund (UNICEF). Thus, for the first time in Brazilian surveys on disabilities, questions were adjusted according to the level of child development expected for that age bracket, allowing for more precise identification of disabilities in children.

Another novelty was the inclusion of the theme of communication in Brazilian Sign Language (Língua Brasileira de Sinais - Libras), regardless of being people with auditory deficiency. The category was adapted from the Expanded set of questions about functionality. The question in it was: “Do you use sign language?”, whereas in the NHS, it was: “Do you know how to use Brazilian Sign Language (Libras)?”.

The data obtained by the 2019 NHS was published in 2021, closing a gap in information regarding people with disabilities since the 2013 NHS. Focusing on health, it is possible to cross-reference the data about disabilities with information about the access to rehabilitation services and to assistive devices obtained through the Unified Health System (SUS), among others. At the same time, the survey provides analyses regarding socioeconomic aspects, like education and work.

The inclusion of the issue of disabilities in the 2022 Continuous PNAD was the result of cooperation between the IBGE and the National Secretary of the Rights of Persons with Disabilities. This was the first time that disabilities were studied in this survey, as part of a specific module, applied only in the third semester of 2022. In addition to identifying people with disabilities, the study also sought to advance towards the goals of the 2030 Agenda for Sustainable Development, which recommends the production of data about the job market and other life aspects related to this population. The applied questionnaire had more adherence to the short list of questions about disabilities from the WG, addressing difficulties to see, to hear, to walk, or to climb stairs; to memorize and to concentrate; to perform self-care and to communicate, with the addition of two questions regarding difficulties in the use of the upper limbs. The cutoff at two years of age was maintained, as were the adaptations for children under 5 years of age.

Notably, the question about limitations in mental/intellectual functions was removed. This reflects the lack of consensus about how to define what was previously categorized as “mental and/or intellectual deficiency”. In fact, the WG has not developed a specific syntax for identifying people with mental, intellectual, or psychosocial disabilities, nor for any kind of current disability. To infer about the individuals in the sample that may have intellectual disabilities, for instance, one needs to decide what the most relevant domains are and create a composed measure (proxy) that reflects this kind of disability.

However, the focus is on ensuring the inclusion of people with disabilities in the statistics, according to characteristics that may guide public policies, rather than merely categorize them by types of disability. Countries considered to be references in the production of statistics about people with disabilities, such as Australia, publish information with emphasis on functions, levels of difficulty to perform them, and the consequent need for assistive devices, with less concern placed on labeling individuals⁷7 Botelho L, organizador. Censo 2021. Experiências na América do Sul. Rio de Janeiro: Sindicato Nacional dos Trabalhadores do IBGE - ASSIBGE Núcleo Chile; 2020.^,88 Botelho L, Porciuncula K. Os desafios para a produção de indicadores sobre pessoas com deficiência: ontem, hoje e amanhã. In: Simões A, Athias L, Botelho L, organizadores. Panorama nacional e internacional da produção de indicadores sociais. Grupos populacionais específicos e uso do tempo. Rio de Janeiro: IBGE; 2018. p. 116-169..

Data from the 2022 Continuous PNAD concerning disabilities was published in July 2023, and provided highly relevant information on the educational and working characteristics of people with disabilities¹⁶16 Instituto Brasileiro de Geografia e Estatística (IBGE). Pela primeira vez, PNAD contínua reúne e disponibiliza dados sobre pessoas com deficiência [Internet]. 2023. [acessado 2024 fev 11]. Disponível em: https://www.gov.br/secom/pt-br/assuntos/noticias/2023/07/pela-primeira-vez-pnad-continua-reune-e-disponibiliza-dados-sobre-pessoas-com-deficiencia
https://www.gov.br/secom/pt-br/assuntos/... . This was particularly significant, since Brazil was in need of information about people with disabilities in the country. The data collection by the Continuous PNAD coincided with part of the period of data collection carried out by the Demographic Census due to successive delays of census activities caused by the COVID-19 pandemic. However, given its dimensions, the data from the Census required more time to be published. The 2022 Demographic Census, as well as the previous ones, was based on two kinds of questionnaires: a basic questionnaire applied in all of the households, and an extended one, applied in a selected sample of households. The theme of people with disabilities belongs to the sample questionnaire, in accordance with the 2019 NHS and the 2022 Continuous PNAD and different from other prior censuses, it directed investigation towards people, aged 2 years and over. Participants who did not want to provide information during the census agent’s visit had the option of doing so via Internet.

The planning process of the 2022 Census was extremely disrupted, even before the pandemic period. The Ministry of Economy, created in 2019, was working on reducing the budget for questionnaires in the census, which caused an intense campaign in defense of the integrality of the census, which became known as “Everyone Pro-Census”⁷7 Botelho L, organizador. Censo 2021. Experiências na América do Sul. Rio de Janeiro: Sindicato Nacional dos Trabalhadores do IBGE - ASSIBGE Núcleo Chile; 2020.. In that context, the 2022 Census is the most concise of the three surveys that investigated disabilities, with questions about difficulties in seeing, listening, and mobility, and only one question about the upper limbs.

The approach to mental disabilities was also maintained with a style similar to that of the 2019 NHS. To that respect, it is important to mention that, although the periods of data collection of the 2022 Census and the 2022 Continuous PNAD partially overlapped, the production of the 2022 Continuous PNAD questionnaire took place later than that of the Census, and during that opportunity, there was a decision to remove the category.

Even though it was not in the section with questions about disabilities, one question was included about autism in the questionnaire of the sample Census, after it became mandatory by Law no. 13,861, from July 18, 2019. Therefore, the category did not pass through the same phases of the other parts of the Census questionnaires. The structure of the question differs from the others, requiring the person to have a diagnosis of autism by a health professional; additionally, there is no age cutoff. The answer options are binary (yes/no) and do not differentiate degrees of severity of autism in each individual.

In the 2019 NHS, the 2022 Continuous PNAD, and likely in the 2022 Census, the criteria adopted to denominate people with disabilities in the process of formulating the indicators applies a cutoff line recommended by the WG. Thus, people are considered to have a disability when they are reported to have severe difficulties or are not able to perform at least one of the tasks being investigated, regardless of the use of assistive devices or not. However, it is possible to restrict or expand this conceptual limitation in order to address other demands, for instance, by including people who reported “having some difficulty”. To reach this objective, one must use microdata and create new indicators, as mentioned in the following section of this article.

Although the IBGE is engaged in international comparability in its production of data, that effort is compromised by methodological changes that happen in each survey, as well as by the differences in the number of evaluated functional domains. Moreover, the lack of a comparable historical series, be that because of different surveys, be that in different editions of the same survey, compromise longitudinal analysis regarding people with disabilities¹⁷17 Lenzi M. Os dados sobre Deficiência nos Censos Demográficos Brasileiros. In: XVIII Encontro Nacional de Estudos Populacionais. Águas de Lindóia; 2012..

Nonetheless, diligence in adjusting and maintaining the issue updated is shown by the interactive revision of the questionnaires. At the same time, the more domains are covered in the survey, the greater the refinement, and consequently, the number of people with disabilities that are identified. To date, intense discussions persist regarding the methodology for measuring disabilities for statistical purposes, be that in terms of sampling or in terms of a census.

Public statistics on disabilities in the 2019 NHS and the 2022 Continuous PNAD

Considering the differences discussed in the previous section, the construction of a historical series of surveys, and consequently, systematic comparability of the prevalence of disabilities, were compromised. However, this section will present some exercises with the 2019 NHS and the 2022 Continuous PNAD, bearing in mind that the results of the Census have not yet been published.

Since the 2022 Continuous PNAD verified more functional domains, it is not surprising that it found a higher prevalence of disabilities among the population (8.9%) in comparison to the 2019 NHS (8.4%). Moreover, considering the time lapse of three years between surveys, and considering population aging during the period, it is natural to observe an increase in the absolute number of people with disabilities, since the two phenomena are correlated¹⁸18 Pereira C, Fonseca C, Escova A, Lopes M. Contributo para a classificação da funcionalidade na população com mais de 65 anos, segundo a Classificação Internacional de Funcionalidade. Rev Port Saude Publica; 2011; 29(1):53-63.. In fact, there were 17.3 million people with disabilities in Brazil according to the 2019 NHS, and 18.6 million according to the 2022 Continuous PNAD.

In Graph 1, when comparing the prevalence of disabilities among sexes and age groups, there is a predominance of women with disabilities, especially in the older age groups, in the 2019 NHS, and in the 2022 Continuous PNAD. Such a predominance was expected, considering the increase in life expectancy, especially among women, and the advanced stage in which Brazil is in the process of demographic transition¹⁹19 Alves JED. A transição demográfica e a janela de oportunidade. São Paulo: Instituto Fernand Braudel de Economia Mundial; 2008..

However, it is important to mention that disabilities appear as a more female phenomenon, in the age group of 40 to 49 years, in both surveys. In the literature, the possible explanations for the gender inequalities in access to health services are given by the facts that women are subjected to poorer working conditions and suffer the consequences of violence against women²⁰20 Lee J, Meijer E, Phillips D, Hu P. Disability incidence rates for men and women in 23 countries: evidence on health effects of gender inequality. J Gerontol 2020; 76(2):328-338..

The 2022 Continuous PNAD registered more people with disabilities in younger age groups, in comparison to the 2019 NHS. That structural change may be related to the inclusion of the investigation of communication and learning difficulties, substituting the category which associated limitations in mental/intellectual functions to the difficulties in playing or studying.

Comparability between the two surveys can be done in a more consistent manner when based on the kinds of difficulties, in other words, the characteristics that they both share: vision, hearing, and motor functions of the upper and lower limbs. In this manner, a similar prevalence of disabilities can be verified in the two surveys. Regarding the domains in which comparisons were not possible, what is noticeable is the presence of a relevant percentage that may contribute to the increase in the number of people with disabilities in younger age groups (Table 1).

According to the codification by the WG, to have the cutoff line for people who are considered to be disabled based only on those who answer “have a lot of difficulties” or “cannot do it at all”, excludes people who answered that they “have some difficulty”, as well as people who have no difficulty at all. This adjusts better to international dimensions and to the changes in the concept of disabilities. People with less severe difficulties would thus have less probability of restrictions in terms of participating in social life.

The Graph 2 shows how the use of the cutoff line significantly reduces the prevalence of people with disabilities. In the 2019 NHS, when the cutoff line is removed, the total percentage of people with disabilities in Brazil reaches 52.7 million people, or 25.8% of the population aged 2 years and older. This contingent represents more than triple the population identified when applying the cutoff line. Likewise, this re-reading of the data also impacts the findings of the 2022 Continuous PNAD: without the cutoff line, there are 57.1 million people with disabilities, or 27.3% of the population aged 2 years and older. This pattern can also be seen when the information is disaggregated by sex or by race/skin color.

This dilemma is similar to that faced by programs of care offered to people in a situation of poverty, such as the Family Grant (Bolsa Família): Is it preferable to make an “exclusion error” and leave poor people excluded from the program? Or is it preferable to make an “inclusion error”, and thus contemplate in the policy those who do not fit in the target population? The option for the cutoff line based on age would, therefore, be in consonance with the first reasoning, being more restrictive in the definition of who are the people with disabilities, at least with regard to statistics.

To reflect on the adoption of a cutoff line in the Brazilian scenario, there are some indicators which address access to education and participation in the job market, thus dividing the population into three groups:

Access to education, in childhood and adolescence, measured by school attendance of people aged 4 to 17 years was almost universally guaranteed to people with no difficulties and to people with some difficulties, with rates above 97% for both groups in 2022. On the other hand, among children and adolescents with disabilities, school attendance was 92.4%. In the 2019 survey, people with disabilities were also at a greater disadvantage. The difference between people with no difficulties at all and people with some difficulties was not statistically significant in the two years (Graph 3).

The barriers in access to education are also present in the trajectories of young individuals, aged 18 to 29 years. While among people without difficulties, 71.4% had at least completed High School in 2022, among people with disabilities, only a little more than half (51.1%) had concluded this level of education. Again, the situation of people with some difficulties shifts away from what is found for people with disabilities and becomes closer to that of people without limitations in the functions examined by the survey: 67.5% had completed High School. The same situation was found by the 2019 NHS. For this indicator, the differences between the group without difficulties and with some difficulties are statistically significant (Graph 4).

Educational inequalities are reflected, and add up to other factors, in relation to insertion in the job market. The level of occupation of people without difficulties was 79.7% in the third quarter of 2022. The same indicator revealed that 70.6% of the people with some difficulties were employed; however, among those with disabilities, only 50.5% were employed during the same period. Data from the 2019 NHS revealed inequalities at the same level, which suggests that it is not a conjunctural phenomenon related to the effects of the COVID-19 pandemic or any other seasonal or episodic event (Graph 5).

This group of indicators reveals the pertinence of adopting a cutoff line for defining people with disabilities in the Brazilian scenario. People with more severe difficulties need more support to access basic rights, as they are more commonly excluded in terms of work, key mechanisms of socialization, access to income, and development in modern society. This does not mean that people with some difficulties should be neglected, but rather, that each public policy must correctly identify its priority targets.

Conclusion

The production of statistics about people with disabilities in Brazil has improved in the last two decades, with the consolidation of the identification of this category in the Demographic Census and in the NHS. This theme has also been introduced in the Continuous PNAD, with the expansion of the list of investigated functions, in consonance with the social model of disability. However, relevant gaps still persist and constitute an obstacle to understanding the living conditions of this population, thus compromising the production of public policies.

The absence of the characteristics of disabilities as a permanent theme in the Continuous PNAD makes it impossible to follow, for example, how conjunctural factors affect the insertion of the group in the job market, or the crossing of information of the modules that are applied in intervals or sporadically in the service, such as child labor, access to Internet, victimization, among many others. A similar problem is caused by the absence of the investigation of disabilities in other surveys conducted by the IBGE, such as the Household Income Survey and the National Demographic and Health Survey.

A solution for this missing information would be the inclusion of categories that enable the identification of disabilities in the set of characteristics of the residents, present in every questionnaire used by household surveys conducted by the IBGE, and by so doing, ensure the same status of other demographic characteristics, such as sex, skin color and race. It has been widely demonstrated in literature that the disability experience pervades the lives of individuals in a manner that is at least as important as other characteristics. Such measures would ultimately enable the formulation of a consistent and regular historical series for data regarding people with disabilities.

The present study has also shown that many options made by the IBGE are justified in terms of good practices and international comparability. However, it is important that Brazilian reality not be underestimated. What are the other functions that should be investigated in order to harmonize the data from the IBGE surveys with the criteria of eligibility for public policies, of people with disabilities? That is the question that should be the core agenda. As is carried out, for instance, in the case of vaccination plans, the results of the surveys can be used as a parameter by administrators to create policies, having people with disabilities as their primary target.

References

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