Abstract

This study describes findings from a case study conducted on access to healthcare for people with disabilities based on the perspective of primary care unit professionals and managers in three Brazilian municipalities, considering the dimensions of Availability and Accommodation and Appropriateness. A total of 16 primary care unit healthcare providers and managers were interviewed in Brasília - Federal District, Arcoverde - Pernambuco, and Santos - São Paulo. The Availability and Accommodation dimension showed architectural and urban barriers, lack of healthcare services, geographical concentration of infrastructure, and difficulty coordinating care. The Appropriateness dimension evinced a lack of healthcare provider training, which contributes to communication barriers between healthcare providers and people with disabilities. Interviewees also pointed to a fragile link between the health services that make up the care network. On the other hand, participants deemed professionals’ attitude and the bond built with people with disabilities as facilitators to accessing care. It was expected that the more developed areas within Brazil would have less barriers to access. However, this study showed challenges to accessing health in all settings, including the richest region of Brazil, its poorest region (the Northeast), and its capital.

Keywords:
Disabled Persons; Health Services Accessibility; Primary Health Care

Introduction

The preface to the World Report on Disability, published by the World Health Organization in 2011, found that more than one billion people lived with some kind of disability, of which 200 million showed considerable functional difficulties (WHO, 2011OMS - ORGANIZAÇÃO MUNDIAL DA SAÚDE. Relatório mundial sobre a deficiência. São Paulo: Secretaria de Estado dos Direitos da Pessoa com Deficiência, 2011.). Data from the latest National Health Survey, conducted by the Brazilian Institute of Geography and Statistics, found that 8.4% of its population in 2019 had a disability related to at least one of their functions (IBGE, 2021IBGE - INSTITUTO BRASILEIRO DE GEOGRAFIA E ESTATÍSTICA. Pesquisa Nacional de Saúde: 2019 - Ciclos de vida, Brasil. Rio de Janeiro: IBGE, 2021.).

Historical moments, political scenarios, and theoretical disputes have always influenced the understanding of what configures disability. Historically, the biomedical and social models have prevailed (Borges, 2018BORGES, J. A. S. Política da pessoa com deficiência no Brasil: percorrendo o labirinto. 2018. Tese (Doutorado em Políticas Públicas) - Universidade do Rio Grande do Sul, Porto Alegre, 2018.). According to Diniz (2007DINIZ, D. O que é deficiência. São Paulo: Brasiliense, 2007.), the biomedical concept deems disability as exclusively related to disease. Pereira and Barbosa (2016PEREIRA, É. L.; BARBOSA, L. Índice de Funcionalidade Brasileiro: percepções de profissionais e pessoas com deficiência no contexto da LC 142/2013. Ciência & Saúde Coletiva , Rio de Janeiro, v. 21, n. 10, p. 3017-3026, 2016. DOI: 10.1590/1413-812320152110.18352016
https://doi.org/10.1590/1413-81232015211... ) state that the social model-adopted in this study-deems disability as a socio-historical product, the result of interactions between a diverse body and a society that is unprepared for diversity.

For Shakespeare and Watson (2001SHAKESPEARE, T.; WATSON, N. The Social Model of Disability: An Outdated Ideology? In: BARNARTT, S. N.; ALTMAN, B. M. Exploring Theories and Expanding Methodologies: Where We Are and Where We Need to Go. Bingley: Emerald Group Publishing, 2001. p. 9-28., p. 19), disability constitutes a complex and variable postmodern concept situated at the intersection of biology and society, agency and structure. “Disability cannot be reduced to a singular identity: it is a multiplicity, a plurality.” (Shakespeare; Watson, 2001SHAKESPEARE, T.; WATSON, N. The Social Model of Disability: An Outdated Ideology? In: BARNARTT, S. N.; ALTMAN, B. M. Exploring Theories and Expanding Methodologies: Where We Are and Where We Need to Go. Bingley: Emerald Group Publishing, 2001. p. 9-28., p. 19).

These concepts strongly influence the way in which the state responds to the diverse health needs of people with disabilities. According to Othero and Ayres (2012OTHERO, M. B.; AYRES, J. R. D. C. M. Necessidades de saúde da pessoa com deficiência: a perspectiva dos sujeitos por meio de histórias de vida. Interface , Botucatu, v. 16, n. 40, p. 219-234, 2012. DOI: 10.1590/S1414-32832012005000010
https://doi.org/10.1590/S1414-3283201200... ), such needs have nuclei that are specifically related to health as well as other nuclei consisting of rights, citizenship, education, transportation, and leisure, which require intersectoral interventions.

In public health, aid to people with disabilities was limited to specific preventions and rehabilitations attributed to philanthropy and charity (Othero; Dalmaso, 2009OTHERO, M. B.; DALMASO, A. S. W. Pessoas com deficiência na atenção primária: discurso e prática de profissionais em um centro de saúde-escola. Interface , Botucatu, v. 13, n. 28, p. 177-188, 2009. DOI: 10.1590/S1414-32832009000100015
https://doi.org/10.1590/S1414-3283200900... ). It neglected the health of people with disabilities and had no connection with the principles of the Brazilian Unified Health System (Campos; Souza; Mendes, 2015CAMPOS, M. F.; SOUZA, L. A. DE P.; MENDES, V. L. F. A rede de cuidados do Sistema Único de Saúde à saúde das pessoas com deficiência. Interface, Botucatu, v. 19, n. 52, p. 207-210, 2015.). Militant movements and the influence of international norms on the rights of people with disabilities managed to insert the needs of these individuals into the Brazilian legal framework as an object of public health policies (Dubow; Garcia; Krug, 2018DUBOW, C.; GARCIA, E. L.; KRUG, S. B. F. Percepções sobre a rede de cuidados à pessoa com deficiência em uma região de saúde. Saúde em Debate, Rio de Janeiro, v. 42, n. 117, p. 455-467, 2018. DOI: 10.1590/0103-1104201811709
https://doi.org/10.1590/0103-11042018117... ).

The presidency of the republic launched the Viver Sem Limite: Plano Nacional de Direitos da Pessoa com Deficiência (Living Without Limits: National Plan on the Rights of Persons with Disabilities) as a government priority in 2011. It involved over 15 ministerial portfolios and had planned investments, up to 2014, of around R$ 14 billion in actions divided into priority axes. In 2012, Brazil created the Rede de Cuidados à Saúde da Pessoa com Deficiência (Health Care Network for People with Disabilities) as a priority health network (Campos; Souza; Mendes, 2015CAMPOS, M. F.; SOUZA, L. A. DE P.; MENDES, V. L. F. A rede de cuidados do Sistema Único de Saúde à saúde das pessoas com deficiência. Interface, Botucatu, v. 19, n. 52, p. 207-210, 2015.), instituting the Plano Nacional dos Direitos da Pessoa com Deficiência - Novo Viver sem Limite (National Plan on the Rights of Persons with Disabilities - New Living without Limits) in November 2023.

Strong evidence worldwide suggests that people with disabilities face difficulties accessing health services (as does the scarce data regarding Brazil). For example, the Brazilian National Health Survey found people with disabilities have poor access to rehabilitation services (IBGE, 2014IBGE - INSTITUTO BRASILEIRO DE GEOGRAFIA E ESTATÍSTICA. Pesquisa Nacional de Saúde 2013: percepção do estado de saúde, estilos de vida e doenças crônicas - Brasil, Grandes Regiões e Unidades da Federação. Rio de Janeiro: IBGE , 2014.). The potential challenges they face in accessing health care include discrimination, physical inaccessibility, and information inaccessibility and unavailability (WHO, 2011OMS - ORGANIZAÇÃO MUNDIAL DA SAÚDE. Relatório mundial sobre a deficiência. São Paulo: Secretaria de Estado dos Direitos da Pessoa com Deficiência, 2011.).

Cunha et al. (2022CUNHA, M. A. O. DA et al. Health Care for People with Disabilities in the Unified Health System in Brazil: A Scoping Review. International Journal of Environmental Research and Public Health, Basel, v. 19, n. 3, p. 1472, 2022. DOI: 10.3390/ijerph19031472
https://doi.org/10.3390/ijerph19031472... ) showed that the political framework in Brazil supports the inclusion of people with disabilities in health but fails to ensure this right. For the authors, the health system and factors such as poverty, behavior, and transportation determine access to these health actions and services.

Access to healthcare constitutes a polysemic concept. According to Travassos and Martins (2004TRAVASSOS, C.; MARTINS, M. Uma revisão sobre os conceitos de acesso e utilização de serviços de saúde. Cadernos de Saúde Pública, Rio de Janeiro, v. 20, supl. 2, p. 190-198, 2004. DOI: 10.1590/S0102-311X2004000800014
https://doi.org/10.1590/S0102-311X200400... ), despite lacking a consensus on its definition, the literature shows the distinct and similar aspects between understandings. Still, most concepts refer to the provision of health services, relate to the impact produced on the health of the population, and depend on the adequacy of the provided services.

The concept of access this study adopted follows Levesque, Harris, and Russell (2013LEVESQUE, J. F.; HARRIS, M. F.; RUSSELL, G. Patient-Centred Access to Health Care: Conceptualising Access at the Interface of Health Systems and Populations. International Journal for Equity in Health, London, v. 12, n. 18, 2013. DOI: 10.1186/1475-9276-12-18
https://doi.org/10.1186/1475-9276-12-18... ) and includes the entire path people take to obtain health care, from the perception of care must the intensity of the received services. This study analyzed this concept based on five dimensions related to services (approachability, acceptability, availability and accommodation, affordability, and appropriateness) and five capacities related to individuals (to perceive, to seek, to reach, to pay, and to engage).

This study addresses the access of people with disabilities to health actions and services based on the perspective of primary care unit professionals and managers in three municipalities in the country, considering the dimensions “Availability and accommodation” and “Appropriateness.” It is based on the assumption that, although the Care Network for People with Disabilities has been implemented since 2012, its implementation is still fragile, with primary care facing barriers related to the structure, supply, and adequacy of services, regardless of location.

Methodology

An exploratory, qualitative case study was carried out to analyze the factors that promote or hinder the access of people with disabilities to health services based on the perception of primary care unit professionals and managers in three Brazilian municipalities.

A case study can be used when the object of study refers to a contemporary phenomenon in a natural context, a strategy to broaden the understanding of complex social phenomena (Yin, 2005YIN, R. K. Estudo de caso: planejamento e métodos. 3a ed. Porto Alegre: Bookman, 2005).

The analysis of the perception of healthcare providers constitutes an important tool to better understand the practice and outcome of the care provided to the various populations that seek care in the Brazilian Unified Health System. Knowledge on how professionals perceive disability, care needs, and diversity of this group importantly highlights communication and the information issues and barriers in access for people with disabilities that can affect or promote disparities in the way people with disabilities experience health services (Iezzoni et. al., 2021IEZZONI, L. I. et al. Physicians’ Perceptions of People with Disability and Their Health Care. Health Affairs, Millwood, v. 40, n. 2, p. 297-306, 2021.). The understanding of care providers regarding disability is a key element for access and quality of the offered service (Duckworth, 1988DUCKWORTH, S. C. The Effect of Medical Education on the Attitudes of Medical Students Towards Disabled People. Medical Education, Oxford, v. 22, n. 6, p. 501-505, 1988. DOI: 10.1111/j.1365-2923.1988.tb00793.x
https://doi.org/10.1111/j.1365-2923.1988... ). Thus, to guarantee access we must address the representations of providers that generally tend to reflect the structural ableism within our society (Antonak; Livneh, 2000ANTONAK, R.; LIVNEH, H. Measurement of attitudes towards persons with disabilities. Disability and Rehabilitation, London, v. 22, n. 5, p. 211-224, 2000. DOI: 10.1080/096382800296782
https://doi.org/10.1080/096382800296782... ).

Semi-structured interviews were conducted addressing the capacities of the health system in being close and accessible to users and offering the necessary care in a flexible and appropriate way according to the types and natures of needs (including barriers and facilitators) and perspectives on disability, the health needs of people with disabilities, and the regular functioning of services.

An intentional and heterogeneous sample was carried out with 16 primary health care unit professionals and managers in Brasília (Federal District), Arcoverde (state of Pernambuco), and Santos (state of São Paulo). In July 2022, Brasília had 3,094,325 inhabitants and a 60.95% primary care coverage, with 596 family health teams, Arcoverde had 75,295 inhabitants and 25 family health teams, serving all its population, and Santos had 37 family health teams, serving only 30.76% of its 433,991 inhabitants (Brasil, 2023BRASIL. Ministério da Saúde. Cobertura da Atenção Básica. Brasília, DF: Ministério da Saúde, 2023. Disponível em: Disponível em: https://egestorab.saude.gov.br/paginas/acessoPublico/relatorios/relHistoricoCoberturaAB.xhtml . Acesso em: 20 jul. 2023.
https://egestorab.saude.gov.br/paginas/a... ).

We opted for a comparative analysis between different primary health care (PHC) contexts to verify to what extent the similarities and differences in the context would affect the perception of professionals. At the time of the research, the territories had a minimally constituted care network, including basic health units and family health support centers.

The interviews, conducted from May to November 2021, were recorded and transcribed, lasting an average of 40 to 60 minutes. Some were held in-person, obeying all safety protocols required due to the COVID-19 pandemic. Other interviews were conducted virtually on Google Meet. Authorization for them were obtained from subjects by an informed consent form.

The content of the interviews was analyzed by meaning condensation (Kvale, 1996KVALE, S. InterViews: An Introduction to Qualitative Research Interview. California: SAGE Publications, 1996.), i.e., reading the transcripts, finding natural units, defining central themes and, finally, organizing theme descriptions according to the analyzed dimensions.

In total, two of Levesque, Harris, and Russell’s (2013LEVESQUE, J. F.; HARRIS, M. F.; RUSSELL, G. Patient-Centred Access to Health Care: Conceptualising Access at the Interface of Health Systems and Populations. International Journal for Equity in Health, London, v. 12, n. 18, 2013. DOI: 10.1186/1475-9276-12-18
https://doi.org/10.1186/1475-9276-12-18... ) access dimensions were defined as categories of analysis: “Availability and Accommodation” and “Appropriateness.” The first one is related to the physical existence of health resources with sufficient capacity to produce services and the second, to what services are provided and how they are provided to evaluate their integrated and continuous nature.

This study belongs to the research “Fortalecendo a inclusão de pessoas com deficiência no Sistema de Saúde no Brasil: explorando o acesso das pessoas com deficiência aos serviços de saúde em Pernambuco” (Strengthening the inclusion of people with disabilities in the Health System in Brazil: exploring the access of people with disabilities to health services in Pernambuco), developed by Instituto Aggeu Magalhães - Fundação Fiocruz/Pernambuco, Universidade Federal de Pernambuco (UFPE), Fiocruz Brasília, Universidade de São Paulo, and the London School of Hygiene and Tropical Medicine, with funding from the Medical Research Council, submitted and approved by the Human Research Ethics Committees of Recife, Brasília, Federal District, and São Paulo (CAAE 25888219.3.0000.5190, 26432619.5.1001.8027, and 26306519.4.0000.0065, respectively).

Results and discussion

This study describes the agreements and disagreements in the interviewees’ narratives based on two analytical dimensions: Availability and Accommodation and Appropriateness.

Availability and accommodation

Levesque, Harris and Russel (2013LEVESQUE, J. F.; HARRIS, M. F.; RUSSELL, G. Patient-Centred Access to Health Care: Conceptualising Access at the Interface of Health Systems and Populations. International Journal for Equity in Health, London, v. 12, n. 18, 2013. DOI: 10.1186/1475-9276-12-18
https://doi.org/10.1186/1475-9276-12-18... ) consider that the Availability and Accommodation dimension is related to the physical existence of health resources, the most important aspects of which include their material presence and their capacity to produce services. The dimension involves aspects such as the characteristics of facilities (geographical accessibility) and urban (decentralization and transport system) and individual contexts (working hour flexibility and length).

Most interviewees agree on the need for organizing access to health units to adapt their physical structure, pointing out that only the recently built units ensure access to people with disabilities. They also reported the lack of investment in urban structures that ensure this access, a barrier that reduces the ability of users to reach health units.

Although the Family Health Strategy has been promoted as a tool to reorient the care model in country and as a main space to materialize primary health care, the structure of many units still faces challenges regarding accessibility and their capacity of offering comprehensive care without barriers, which compromise first access by interfering with the role units play as a preferential gateway to health services people with disabilities must access to meet their needs.

Nicolau, Schraiber, and Ayres (2013NICOLAU, S. M.; SCHRAIBER, L. B.; AYRES, J. R. D. C. M. Mulheres com deficiência e sua dupla vulnerabilidade: contribuições para a construção da integralidade em saúde. Ciência & Saúde Coletiva , Rio de Janeiro, v.18, n. 3, p. 863-872, 2013. DOI: 10.1590/S1413-81232013000300032
https://doi.org/10.1590/S1413-8123201300... ) found that physical street access, transportation, and the structure of primary care units represent important barriers to the access of people with disabilities to health actions and services. Castro et al. (2022) point to the need to direct efforts toward improving the accessibility of primary health care facilities. Addressing these architectural and urbanistic barriers represents the possibility of offering effective access to people with disabilities.

An adequate structure to meet health needs must also sufficiently supply actions and services, the scarcity of which results in a barrier to access. Its insufficiency is expressed in longer waiting for health care.

It is necessary to assess the needs and program a supply with sufficient installed capacity to meet the diverse and complex demands of people with disabilities requiring continuous care. Souza et al (2014SOUZA, F. DE O. S. et al. Do normativo à realidade do Sistema Único de Saúde: revelando barreiras de acesso na rede de cuidados assistenciais. Ciência & Saúde Coletiva , Rio de Janeiro, v. 19, n. 4, p. 1283-1293, 2014. DOI: 10.1590/1413-81232014194.01702013
https://doi.org/10.1590/1413-81232014194... ) found, among the obstacles health system users face, the insufficient provision of specialized consultations and exams, the long interval for specialized care, and the absence of communication between services at different levels of care. Clemente et al. (2022CLEMENTE, K. A. P. et al. Barreiras ao acesso das pessoas com deficiência aos serviços de saúde: uma revisão de escopo. Revista de Saúde Pública, São Paulo, v. 56, n. 64, 2022. DOI: 10.11606/s1518-8787.2022056003893
https://doi.org/10.11606/s1518-8787.2022... ) also showed that the barriers to access for people with disabilities include the scarce supply of services.

This offer must consider the singularities that permeate the health needs of people with disabilities; equity must be included when planning the services offered. Studying the implementation and constraints of the Care Network for People with Disabilities in a health region in the state of São Paulo, Mota and Bousquat (2023MOTA, P. H. DOS S.; BOUSQUAT, A. Desafios para a implementação da Rede de Cuidados à Pessoa com Deficiência em uma região de saúde: um olhar a partir das dimensões política, organização e estrutura. Saúde e Sociedade, São Paulo, v. 32, n. 2, e220608pt, 2023. DOI: 10.1590/S0104-12902023220608pt
https://doi.org/10.1590/S0104-1290202322... ) found that health needs failed to guide the organization of the structure of rehabilitation services, except for its specialized rehabilitation center. The authors pointed out important challenges to ensure the right to health, recognizing that these barriers crystallize the inequalities experienced by people with disabilities.

All studied municipalities evinced the difficulty of access to specialized services either due to the low supply (with longer waiting times) or the geographic location (concentration in a certain geographic area), implying a greater need for financial expenses with transportation and longer travel time.

The continuous need for specialized services sometimes consists of the main loci of care for people with disabilities due to their multiple and complex demands, which can compromise the principle of equity, especially under the absence of actions and services for more vulnerable populations that need it most. Castro et al. (2021CASTRO, A. M. M. DE. et al. Barreiras ao acesso a serviços de saúde à pessoa com deficiência no Brasil: uma revisão integrativa. Práticas e Cuidado: Revista de Saúde Coletiva, Salvador, v. 2, e11351, 2021.) found that the insufficient supply of actions and services materializes itself in long waiting lines in the daily life of the health system, representing an important barrier to access to care.

To improve access to and quality of care, interviewees believe that primary care should make professionals available to ensure timely care, reporting that PHC has no governance over the scheduling system, evincing difficulties scheduling specialized care beyond primary care units, which ultimately lies under users’ responsibility.

Communication between health services and integration between the subjects involved in care coordinates care, contributing to continuous, supportive, and timely care. Under unavailable offer and bureaucratic regulation, health teams feel unable to coordinate patients’ care and monitor their therapeutic path within the health system.

According to Castro et al. (2021CASTRO, A. M. M. DE. et al. Barreiras ao acesso a serviços de saúde à pessoa com deficiência no Brasil: uma revisão integrativa. Práticas e Cuidado: Revista de Saúde Coletiva, Salvador, v. 2, e11351, 2021., p. 11) when regulation constitutes a bureaucratic element, materialized in “complex, disconnected, and confusing flows,” people with disabilities have to access “different services to reach the point in the network that meets their health needs.” These barriers (traveled distances and long waiting times) can keep people with disabilities away from services and increase waiting lines, “characterizing a lack of care, especially in specialized care services, generating an increase in waiting time for care and absenteeism” (Castro et al., 2021CASTRO, A. M. M. DE. et al. Barreiras ao acesso a serviços de saúde à pessoa com deficiência no Brasil: uma revisão integrativa. Práticas e Cuidado: Revista de Saúde Coletiva, Salvador, v. 2, e11351, 2021., p. 11; free translation).

An interviewee in Santos stresses that, in addition to supply availability, the difficulty of access to specialized services is worsened under social vulnerability or the geographic concentration of services.

Fineman (2010FINEMAN, M. A. The Vulnerable Subject and the Responsive State. Emory Law Journal, Atlanta, v. 60, n. 10-130, 2010. Disponível em: Disponível em: https://ssrn.com/abstract=1694740 . Acesso em: 22 jul 2023.
https://ssrn.com/abstract=1694740... , p. 1) finds that vulnerability can be considered a result of the interaction of institutional and economic aspects based on the quality and quantity of actions and services available to individuals. For the author, vulnerability “suggests a relationship of responsibility between state and individual.” In the case of people with disabilities, this relationship is weakened and intensifies an already present vulnerability that makes access to their rights unfeasible.

Clemente et al. (2022CLEMENTE, K. A. P. et al. Barreiras ao acesso das pessoas com deficiência aos serviços de saúde: uma revisão de escopo. Revista de Saúde Pública, São Paulo, v. 56, n. 64, 2022. DOI: 10.11606/s1518-8787.2022056003893
https://doi.org/10.11606/s1518-8787.2022... , p. 12) reinforce the need to direct efforts to reduce barriers, making access to health actions and services equitable. According to the authors, aspects related to access for more vulnerable populations amplify the difficulties to access for people with disabilities, “who often experience poverty more than any minority or ethnic group” (Clemente et al., 2022CLEMENTE, K. A. P. et al. Barreiras ao acesso das pessoas com deficiência aos serviços de saúde: uma revisão de escopo. Revista de Saúde Pública, São Paulo, v. 56, n. 64, 2022. DOI: 10.11606/s1518-8787.2022056003893
https://doi.org/10.11606/s1518-8787.2022... , p. 12; free translation).

Appropriateness

Appropriateness refers to which services are provided and how they are provided, relating to aspects such as technical and interpersonal quality and care coordination and continuity. As a skill corresponding to the population, it refers to users’ ability to engage and empower themselves (Levesque; Harris; Russell, 2013LEVESQUE, J. F.; HARRIS, M. F.; RUSSELL, G. Patient-Centred Access to Health Care: Conceptualising Access at the Interface of Health Systems and Populations. International Journal for Equity in Health, London, v. 12, n. 18, 2013. DOI: 10.1186/1475-9276-12-18
https://doi.org/10.1186/1475-9276-12-18... ).

Regarding technical and interprofessional quality the interviewees highlight the weak institutional offer of professional training toward aiding people with disabilities since their training mostly result from personal initiatives and their own investment. When existent, the offer of institutional training fails to focus on the care of people with disabilities.

In an integrative review on the ways in which people with disabilities access primary health care services in Brazil, Bezerra, Silva, and Maia (2015BEZERRA, T. V.; SILVA, M. A. DA; MAIA, E. R. Acesso da pessoa com deficiência à atenção primária no Brasil: limites e possibilidades. Cadernos de Cultura e Ciência, Crato, v. 14, n. 2, p. 65-74, 2015. DOI: 10.14295/cad.cult.cienc.v14i2.985
https://doi.org/10.14295/cad.cult.cienc.... ) found, that despite the achievements related to the right to health, access to PHC still faces difficulties due to failures in physical accessibility and in the skills of professionals in caring for people with disabilities. The authors highlight the need to invest in the physical structure and professional training to ensure comprehensive care. Dubow, Garcia, and Krug (2018DUBOW, C.; GARCIA, E. L.; KRUG, S. B. F. Percepções sobre a rede de cuidados à pessoa com deficiência em uma região de saúde. Saúde em Debate, Rio de Janeiro, v. 42, n. 117, p. 455-467, 2018. DOI: 10.1590/0103-1104201811709
https://doi.org/10.1590/0103-11042018117... ) also identified the shortcomings of continuous education as one of the difficulties in building and ensuring effective and comprehensive health practices for people with disabilities.

Possibly as a result of insufficient training, all interviewees perceive a difficulty communicating with people with disabilities and point it as a barrier to access to health actions and services.

The difficulty of communication, more than limiting access, makes it impossible to build the bond between subjects and health teams, who are unable to accommodate demands and meet needs. Wieganda and Meirelles (2019WIEGANDA, B. B.; MEIRELLES, J. M. L. DE. Saúde das pessoas com deficiência no Brasil: uma revisão integrativa na perspectiva bioética. Revista Latinoamericana de Bioética, Bogotá, v. 37, n. 2, p. 29-44, 2019. DOI: 10.18359/rlbi.3900
https://doi.org/10.18359/rlbi.3900... ) observe that many elements bar accessibility for people with disabilities, including communication.

Othero and Ayres (2012OTHERO, M. B.; AYRES, J. R. D. C. M. Necessidades de saúde da pessoa com deficiência: a perspectiva dos sujeitos por meio de histórias de vida. Interface , Botucatu, v. 16, n. 40, p. 219-234, 2012. DOI: 10.1590/S1414-32832012005000010
https://doi.org/10.1590/S1414-3283201200... , p. 228), in their life-history study on the identification of the health needs of people with disabilities, report that a participant has the “non-construction of an (a)effective relationship with doctors and healthcare providers who care for them” in “their great difficulty in communication due to their hearing impairment” (free translation).

Still from the perspective of communication, but now in the relationship between the services, the participants highlighted the fragility in this area and point out the important role of community health agents in the follow-up of cases, especially due to the incipient counter-referral mechanisms.

Communication between healthcare providers and services is essential to consolidate the care network and to ensure continuity of care. Clemente et al. (2022CLEMENTE, K. A. P. et al. Barreiras ao acesso das pessoas com deficiência aos serviços de saúde: uma revisão de escopo. Revista de Saúde Pública, São Paulo, v. 56, n. 64, 2022. DOI: 10.11606/s1518-8787.2022056003893
https://doi.org/10.11606/s1518-8787.2022... ) claim that the absence of this communication offers an element that inhibits access to the health system and represents a weakness in the health care network.

Effective communication between the elements that make up this network, recognized here as subjects, teams, services, and territories, must happen harmoniously to ensure supportive and efficient therapeutic itineraries. A flow failing to occur weakens the coordination of care and is compromises another important attribute of primary care, longitudinality.

Notably, the main barriers related to accessibility in primary care are associated with architectural issues and the physical structure of health units. Santos et al. (2020SANTOS, M. L. DE M. DOS et al. Barreiras arquitetônicas e de comunicação no acesso à atenção básica em saúde no Brasil: uma análise a partir do primeiro Censo Nacional das Unidades Básicas de saúde, 2012. Epidemiologia e Serviços de Saúde, Brasília, DF, v. 29, n. 2, e2018258, 2020. DOI: 10.5123/S1679-49742020000200022
https://doi.org/10.5123/S1679-4974202000... ) analyzed the National Census of basic health units and found worrying architectural and communication barriers in Primary Care throughout Brazil. Their findings showed a lack of accessibility throughout the national territory, weakening the role of primary care, which, as a coordinator, compromises access, care, and problem-solving capacity of the provided care.

The interviewees reinforce that PHC has no governance over the availability of the regulated supply, compromising care coordination. Answers reported the frail relationship between PHC and the specialized network and scarce supply.

Dubow, Garcia, and Krug (2018DUBOW, C.; GARCIA, E. L.; KRUG, S. B. F. Percepções sobre a rede de cuidados à pessoa com deficiência em uma região de saúde. Saúde em Debate, Rio de Janeiro, v. 42, n. 117, p. 455-467, 2018. DOI: 10.1590/0103-1104201811709
https://doi.org/10.1590/0103-11042018117... ) found that the difficulty of access and long waiting lists for specialized services feature among the elements that restrict the health care of people with disabilities. To them, the therapeutic trajectory of people with disabilities in the health network is influenced by what is offered, rather than by their health needs, fragmenting care and compromising the coordination of comprehensive care.

Farias et al. (2023FARIAS, T. M. O. et al. O estreito acesso das pessoas com deficiência aos serviços de saúde em uma capital nordestina. Ciência & Saúde Coletiva, Rio de Janeiro, v. 28, n. 5, p. 1539-1548, 2023. DOI: 10.1590/1413-81232023285.15172022
https://doi.org/10.1590/1413-81232023285... ) found that the constitution of the care network for people with disabilities in the capital of the state of Pernambuco lacks a configuration that favors the functioning of network services. For them, the insufficient services in the care network impairs the continuity of care and hinders the regulation of vacancies. Thus, a weakened regulation and support system interfere with the appropriateness of the provided service.

In fact, an interviewee from Santos reinforces the difficulty of communicating with other health services and social facilities that hinders the collective and efficient construction of access to health actions and services and other intersectoral public policies.

Due to the complex specificities of people with disabilities, according to Othero and Ayres (2012OTHERO, M. B.; AYRES, J. R. D. C. M. Necessidades de saúde da pessoa com deficiência: a perspectiva dos sujeitos por meio de histórias de vida. Interface , Botucatu, v. 16, n. 40, p. 219-234, 2012. DOI: 10.1590/S1414-32832012005000010
https://doi.org/10.1590/S1414-3283201200... , p. 221), their needs exceed the field of health, requiring intersectoral actions to ensure comprehensive care for them. For the authors, “the needs are not limited to the disease; prevention and care must be articulated, the problems are complex and involve the sociocultural context, the user is a subject (with history, values, desires)” (free translation).

On the other hand, we observed that, in all participating municipalities, access was facilitated because of the attitude of professionals who seek to overcome architectural barriers and institute work processes with the objective of ensuring access to care actions in health unit.

For Othero and Ayres (2012OTHERO, M. B.; AYRES, J. R. D. C. M. Necessidades de saúde da pessoa com deficiência: a perspectiva dos sujeitos por meio de histórias de vida. Interface , Botucatu, v. 16, n. 40, p. 219-234, 2012. DOI: 10.1590/S1414-32832012005000010
https://doi.org/10.1590/S1414-3283201200... , p. 227), observing the need for care of people with disabilities, “the social and cultural imaginary permeated by prejudices and stereotypes contributes to the health care of this population becoming even more complex” (free translation). The encounter between persons with disability and professionals must take place in a scenario of respect for differences since health care in this case falls into a “context in which the devaluation and stigma of the person with disabilities predominates” (Othero; Ayres, 2012OTHERO, M. B.; AYRES, J. R. D. C. M. Necessidades de saúde da pessoa com deficiência: a perspectiva dos sujeitos por meio de histórias de vida. Interface , Botucatu, v. 16, n. 40, p. 219-234, 2012. DOI: 10.1590/S1414-32832012005000010
https://doi.org/10.1590/S1414-3283201200... , p. 227; free translation).

The bond between professionals, families, users, and communities is an essential for care in the face of adversity.

The bond and trust established in the daily routine of health services are essential elements to ensure access to the health system. The relationships that are formed, the respect for singularities, and the diversity and complexity of health needs strengthen the bond and help longitudinal follow-ups, which are necessary for the care of people with disabilities.

Castro et al. (2021CASTRO, A. M. M. DE. et al. Barreiras ao acesso a serviços de saúde à pessoa com deficiência no Brasil: uma revisão integrativa. Práticas e Cuidado: Revista de Saúde Coletiva, Salvador, v. 2, e11351, 2021., p. 17) recognize that bonding is located as a relationship technology that contributes to the production of more effective care for people with disabilities and to “the production of greater autonomy for health and life” (free translation).

Final considerations

Results indicate important challenges for people with disabilities to access health actions and services. The Availability and Accommodation challenges refer to architectural and urban barriers, service supply, the geographical concentration of social facilities, and the difficulty coordinating care. The social vulnerabilities that mark the lives of this population enhanced these shortcomings.

The second studied dimension, Appropriateness, showed the institutional absence of qualification that contributes to communication difficulties between healthcare providers and people with disabilities. Interviewees also pointed to the fragility in the communication between the health services that make up the care network and in the implementation of intersectoral actions that encompass the breadth of health needs.

On the other hand, the attitude of the professionals and the bond they build with people with disabilities facilitated access. The establishment of a work process that encompasses the singularities of people with disabilities and ensures the construction of supportive care aim to overcome the barriers that hinder access.

This study has some limitations, one of which refers to the need to incorporate people with disabilities and/or professionals from other services in the care network as interviewees. Therefore, other studies may consider the importance of a more comprehensive analysis to overcome access barriers.

Health facilities must have an adequate physical structure and municipalities must be accessible. Health teams, in turn, must be complete and have access to a broad education that can encompass the breadth of care for people with disabilities. Healthcare services must communicate, reducing waiting times and ensuring continuity of care. Solid foundations must strengthen the bond, commitment, and communication between subjects, whether those who care or those who are cared for.

Access to health care for people with disabilities is an achievement of a social movement that has historically occupied spaces and fights to guarantee fundamental rights. Brazil resumes this path and shows the need to face the barriers that are imposed on their daily lives based on the institution of the Novo Viver Sem Limites (New Living Without Limits).

It was expected that the more developed spaces would offer more possibilities of access but, whether in its capital, its richest region, or in its northeastern hinterland, Brazil still faces a struggle that requires resistance. The Brazilian state has a duty to guide the formulation of public policies aimed at people with disabilities based on their right to health, ways of living, and dignity.

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