Background

People with disabilities represent about 1.3 billion of the world’s population [1] and include “those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others” [2]. On average, people with disabilities die 14 years earlier, including due to preventable health inequities [1, 3]. In Latin America and the Caribbean (LAC) there are about 85 million people with disabilities (15% of the total population) [4]. Systematic review evidence indicates that they use health services more frequently than the general population and face inequities in terms of coverage, quality, and affordability of healthcare, related to access barriers [5]. A meta-synthesis of qualitative studies conducted in LAC confirms that adults with disabilities face broad-ranging access barriers both in the supply and demand sides of primary healthcare (e.g., poor health worker training and inaccessible information) [6]. This overall situation in LAC is also apparent in Chile, the focus of the current study, where there are about 3 million people with disabilities (18% of the population) [7]. For instance, evidence from Chile shows that people with disabilities are more likely to experience difficulties accessing health centers [8] and are less likely to undergo cancer screening [9, 10]. Moreover, about 77% of primary healthcare workers report a lack of protocols for patients with disabilities, and 59% describe inaccessible health infrastructure [11].

In this context, it is crucial that people with disabilities are meaningfully involved and that their rights are promoted and mainstreamed in the health sector [1, 12]. Hence, to realize disability-inclusive care, health systems should “expect, accept, and connect” people with disabilities to access quality health services that are intentionally designed to include them, on an equal basis as those without disabilities and without incurring additional costs [13, 14]. The Missing Billion Framework identifies core components relevant for achieving disability-inclusive health, operating at the systems level (governance, leadership, financing, data and evidence), demand-side service level (autonomy and awareness, affordability) and supply-side service level (human resources, health facilities, rehabilitation and assistive technology) [14]. Achievement of disability inclusion across these components should improve health outputs for people with disabilities (e.g. service coverage) and therefore reduce inequities in health outcomes (e.g. mortality gaps) [14].

Barriers to accessing healthcare often arise from health system level failures, in particular lack of governance, as health policies are structural determinants of the organization of healthcare and health equity [15]. The policy framework in Chile appears to support the inclusion of people with disabilities in healthcare. In 2008, Chile ratified the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) [16] and in 2010 the National Disability Law was enacted [17]. Furthermore, the last National Health Strategy (2010–2020) included provisions for better access to rehabilitation, education of caregivers, and access to treatment for people with psychosocial disabilities [18]. However, amidst the upcoming review of Chile before the Committee on the Rights of Persons with Disabilities, civil society expressed concerns about implementation gaps in health [19]. For instance, they raised issues about the continuation of forced sterilization of women with disabilities and lack of health worker protocols for attending to patients with disabilities, inaccessible health information, and lack of mental health funding [19]. Moreover, there is evidence that the needs of people with disabilities were not fully addressed in government responses to COVID-19 in South America, including in Chile, where this group remained invisible in data collection for decision-making in public policy [20, 21].

Health policy analyses on disability are critical for understanding the gaps between policy formulation and implementation, the strengths and weaknesses of policy documents, and the level of commitment to disability [22,23,24]. However, health policies have been largely understudied using a disability lens. Previous policy analyses in Chile have focused on disability-specific policies [25, 26] or programs [27, 28]. Therefore, it is necessary to understand the broad health policy framework impacting access of people with disabilities to general healthcare across the Chilean health system. The aim of this study is to assess the inclusion of people with disabilities in Chilean general healthcare policy documents and to explore the perceptions of key national stakeholders regarding the policy context, policy processes, and actors involved.

Methods

Study design and setting

This study consisted of a policy content analysis of 12 policy documents and 15 key informant interviews. The study was conducted in Chile, a geographically diverse high-income country of 20 million inhabitants [29,30,31]. Chile has a two-tiered health system including both public and private insurance schemes and a mixed health service provision [32, 33]. It is led by the Ministry of Health, structured through the under secretariats of Public Health and Healthcare Networks. The National Health System of Healthcare Services includes 29 autonomous health services across 16 regions, overseeing mainly hospitals. Local municipalities manage the provision of decentralized primary healthcare services.

Policy analysis

Selection of policies

Health policy documents were selected that fulfilled the following eligibility criteria: (1) overarching documents (policies, strategies, or plans), (2) issued by official government bodies (e.g. Ministry of Health (MoH)), (3) currently in force (i.e., published within the last 5 to 10 years, or targets not outdated), (4) of national scope, and (5) considered to relate to access to general healthcare for the overall population. Laws, technical guidance and recommendations were excluded. Key stakeholders related to disability policy and health systems in Chile were consulted to refine the selection criteria, including the MoH, the Ministry of Social Development and Family, the Pan American Health Organization and four academic experts. Eligible policies were searched through official websites of the national libraries of the MoH, the Ministry of Social Development and Family, and the National Congress of Chile.

Data extraction and analysis

The EquiFrame framework was used to guide the content analysis of health policy documents [34]. The EquiFrame is a systematic policy analysis framework developed to assess the inclusion of 21 core concepts of human rights and 12 vulnerable groups in health policies, to improve equity in healthcare. Each core concept has a description of its key language and questions, which were adapted to be relevant to people with disabilities and general healthcare (Table 1). For example, the key language for the concept of Non-discrimination was: “Persons with disabilities are not discriminated against based on their distinguishing characteristics”, and the key question: “Does the policy support the rights of persons with disabilities with equal opportunity to receive healthcare?”. Moreover, we searched for the explicit mention of “people with disabilities” within documents and what was defined as disability under each policy.

Table 1 List of EquiFrame adapted core concepts of human rights for people with disabilities
Full size table

Core concepts were then translated into Spanish and the translation was checked by an external assessor (Additional File 1). Support was sought from the authors of the EquiFrame to review and approve the adaptations. Two reviewers (DRG and PGM) independently assessed each policy document for the inclusion of core concepts. Referenced concepts were rated based on their quality of commitment on a continuum from 1 (i.e., only mentioned) to 4 (i.e., intention to monitor) and then extracted and recorded in a Microsoft Excel spreadsheet (Table 2).

Table 2 Scoring of quality of commitment and summary indices
Full size table

The scores were compared and aligned by the reviewers, after resolving any discrepancies. Four summary indices were developed: core concept coverage, core concept quality, core concept reference, and average score (Table 2).

Key informant interviews

Sampling and recruitment

Fifteen key national stakeholders were interviewed to explore the policy context, process and actors involved (Table 3). A stratified purposive sampling was applied to ensure the representation of different views and expertise of sectors related to health policy and disability. We recruited participants through recommendations of governmental officials and academic experts. Potential participants were also identified from policy documents. For example, authors, contributors, technical advisors, and those designated to implement and monitor policies.

Table 3 Participants of key informant interviews (n = 15)
Full size table

Data collection and analysis

Interviews were held in Spanish between October and December 2022. Most interviews were conducted face-to-face at the participant’s workplace or public locations, although some were online through Zoom, due to COVID-19 pandemic public health regulations. Semi-structured interview guides with open-ended questions were used to frame discussions with participants. Interviews lasted between 45 and 60 min and were audio-recorded and transcribed. The Walt and Gilson Policy Analysis Triangle was used to guide the analysis of the key informant interviews [35, 36]. This framework presents a simplified model of the complex interplay between health policy content, systemic factors of the policy context, policy making processes, and the actors involved in a particular issue [35, 36]. Interview transcripts were analysed thematically supported by the NVivo R1 software. Audio recordings were transcribed in Spanish and only selected quotes were translated into English; the quality of the translation was assessed by an external assessor. Transcriptions were coded deductively, with preliminary codes developed based on the interview guide and the emergent topics of the interview. Codes were selected based on frequency, relevance to the research question and level of divergence, and final themes were developed. Codes were revised by co-authors and triangulated with the health policy documents to corroborate information. This study received ethical approval from the Ethics Committees of University of Chile and London School of Hygiene and Tropical Medicine.

Results

Summary indices of the policy content analysis using the EquiFrame

Twelve policy documents were analysed (n = 1 (8%) strategy, n = 4 (33%) policies, and n = 7 (58%) plans) (Table 4, Additional File 2, and Fig. 1) [35,36,37,38,39,40,41,42,43,44,45,46]. Core human rights concepts of people with disabilities were referenced, at least once, in nearly all policies (n = 11, 92%), except for the National Food and Nutrition Policy. The National Mental Health Plan had the highest reference to core concepts (90%), followed by the National Health Strategy (76%) (Table 4). In contrast, the National Plan on Cancer (5%) and Non-Communicable Diseases (10%) had few references to core concepts. However, the high number of references did not reflect the highest strength of policy commitment. For instance, only 1% of concepts referenced in the National Health Strategy described specific policy actions or monitoring of interventions for people with disabilities. The highest quality of commitment was found in the National Mental Health Action Plan (91%), followed by the National Oral Health Plan (83%). Overall, 50% of policies had low (0–3%) quality of commitment.

Table 4 Core concept coverage and quality of health policy documents included (n = 12)
Full size table
Fig. 1
figure 1

Timeline of key legislation, events, and health policies analysed. Legend UNCRPD, United Nations Convention on the Rights of People with Disabilities; NCDs, Non-Communicable Diseases

Full size image

Table 5 shows the aggregated results across policy documents. The concepts of Prevention (17%), Entitlement (12%) and Individualized services (11%) were the top three most frequently mentioned concepts across all policies analysed. The least referenced concept was Privacy (0.3%), although several others were also infrequently mentioned (1%) including Capability-based services, Contribution, Cultural responsiveness, and Efficiency. The highest average quality scores were found in Capacity Building (2.7), and Coordination of Services (2.2). Again, frequency and quality could differ, as with Accountability, which only represented 1% of total references but obtained the highest average score of 3.5. Examples of references scored 3 or 4 are in Additional File 3.

Table 5 References to core concepts and average score across health policy documents (n = 12)
Full size table

Key informant interviews

A fragmented disability movement and health policy

A key issue raised by participants was that fragmentation in the disability movement weakens their influence on the health policy agenda. Interviewees reported that civil society organizations were grouped by impairments or medical diagnoses and advocated for their own health needs, rather than for disability inclusion more holistically.

Fragmentation was also reflected in health policies, which were described as hyper-focalized by health conditions, instead of being formulated more comprehensively for all disabilities. In addition, it was argued that the focus has been on physical and sensory impairments rather than intellectual and psychosocial impairments. This was viewed as inefficient for policy processes. Some participants considered that inclusive health has received some government attention, but mostly focusing on people with autism, thus reinforcing fragmentation.

Participants expressed concerns about parliamentarians supporting causes advocated for by civil society, regardless of rational health prioritizations. They suggested that policy makers should lead policy formulation focusing holistically on the needs of people with disabilities. Ideally, solutions would include a comprehensive and intersectoral disability-inclusive health policy, and mainstreaming of disability in existing health policies.

Role of international agencies in disability perspectives

Two international initiatives were perceived as key to shaping the disability landscape in Chile, by introducing elements of a more social perspective of disability. The World Health Organization (WHO), well recognized as an influential governing body, installed the International Classification of Functioning, Disability and Health (ICF) and biopsychosocial model of disability in Chile. Furthermore, the UNCRPD installed a human rights perspective and was recognized as a relevant legal framework for policy. Nevertheless, some participants reported that the dominant model of disability in Chile remains biomedical.

“Unfortunately, people with disabilities in the health movement are not considered, unless they belong to an organization that obeys a pathologizing or biomedical model […] But these organizations obey the past model, the past! They relate to health in a charitable, rehabilitative way, not in a model of inclusion.” Interview 2, civil society organization.

Disability as low politics in the health policy agenda

Inclusion of all people with disabilities in general healthcare was viewed as a low priority issue for regional or central government. For instance, government officials noted that the accessibility of health services for people with disabilities has remained as a government measure, but without an implementation strategy. Moreover, participants especially argued that there is a lack of policy actions for people with disabilities in the Sexual and Reproductive Health (SRH) Policy, as reaffirmed in this content analysis. Improvement of disability awareness and accessibility mindset among policy makers from the start of policy formulation was seen as fundamental for improving the prioritization of disability, especially in the Ministry of Health.

Ineffective mainstreaming of disability and coordinated action among governing bodies

Government officials consistently noted that disability-related policy is mainly led by the Rehabilitation and Disability Department of the MoH. The Department has an acknowledged role in ensuring disability is mainstreamed across teams, but was criticized for a low interdepartmental work by government officials. However, it was also agreed that it is a general Ministerial challenge to integrate actions across sub-secretaries of health.

Moreover, disability was described as a cross-cutting issue, which should be addressed by several ministries and a complex network of actors, besides the health sector alone. However, government officials and civil society actors noted a lack of coordinated action between ministries. There is a relevant agency - National Disability Agency (NDA; Servicio Nacional de la Discapacidad, SENADIS, for its Spanish abbreviation) of the Ministry of Social Development and Family – whose formal role is to lead disability inclusion in the policy agenda of all governing bodies. However, their effectiveness in fulfilling this role was questioned by participants.

“The NDA is not an institution that is truly a governing body, in terms of putting the issue of disability and inclusion as strongly as it needs to be.” Interview 7, ex-member of parliament.

Civil society’s limited influence in the health policy agenda and engagement in policy formulation

Participants identified four main pathways for influencing the health agenda by civil society, including Organizations of People with Disabilities (OPDs). The first is through advocacy to parliament. The second route includes the participation of people with disabilities in temporary task forces led by the Executive, where issues are recognized. However, civil society and international actors reported that even though task forces were created, policy implementation was uncertain. Third, it is possible for people with disabilities to raise issues at primary care level, when health teams lead participatory assessments of the population’s health needs. Finally, the judicialization of cases and the media has been used by civil society to increase pressure and promote disability inclusion.

However, government officials perceived that OPDs have not managed to influence the health agenda and noted that they still lack capacity for health policy making. A government official also reported that many organizations of civil society lack a structure, are difficult to reach or are not interested in participating in policy processes. One exception highlighted was the autism movement.

“We are recognizing that organizations of civil society are valid actors for needs assessments. This is how is it being done, so when they work on autism, all [autism] organizations participate in the parliament.” Interview 5, government official.

Furthermore, participants reported a limited engagement of civil society in health policy formulation. Their participation is not institutionalized in the MoH, and it depends on the political will of policy makers. Government officials considered that OPDs should be involved in policy design, although their inclusion has been slow. The institutional culture of Government was reported to have acted as a barrier, as technical expert knowledge is prioritized over lived experience of disability.

Gap in implementation of the existing limited policy framework for disability inclusion

Some disability inclusion was reported in the National Health Strategy and the national policies on Mental Health, Elderly, and Childhood and Adolescence, which supports the findings of the document review. The Preferential Care Law for Elderly and People with Disabilities was also regarded as a relevant policy framework for disability inclusion, as it guarantees priority access to appointments, emergencies, medicines, and examinations [37]. However, participants identified a gap between policy formulation and implementation. For example, government officials and health providers reported that the monitoring of the Preferential Care Law revealed a lack of execution, poor preparation of health teams and limited public information on this law.

“The health centers were not implementing this [Preferential Care Law] […] The teams were not prepared. So, while it is true that the spirit of the law is fine, it is often the case that to apply these laws, some kind of resources are needed.” Interview 12, health provider.

Lack of financing, leadership, and human resources affecting policy implementation

Participants identified three main reasons for the policy implementation gap. These included: lack of disability financing, an inconsistent political approach to disability and lack of leadership, and gaps in human resources.

Lack of resources for disability and lack of disability-related pay for performance indicators – the main incentive mechanism for primary care teams [33] – were identified by participants as barriers for policy implementation. For example, the SRH policy did not include resources to improve the accessibility of infrastructure.

“But certainly, one of the problems that we have had in Chile and in many other countries is that action plans are not associated to budget, or budgets are so low that they do not relate to the objectives set for the action plan […] This causes many problems, because it is a dead public policy at the end, without any type of effect”. Interview 15, international actor.

The policy implementation gap was also attributed to changes in government or political authorities and lack of leadership. The political will and perspectives of the government in power and the legislature were recognized as key factors in prioritizing health issues and successful policy implementation (specially from the President and mid-level policy officers). However, regardless of who is in power, the approach to disability appeared inconsistent as policies are either discontinued or restarted from scratch. Moreover, some participants perceived that there was no strong leadership on disability in central government, with diffused responsibilities between the MoH and the NDA. Similarly, at the regional level, health providers considered that disability leadership is fragmented.

“In a way, I am in charge of disability, I see the whole musculoskeletal, neurological rehabilitation program […] It is kind of fragmented, there is no unit that concentrates a strategic and cross-cutting view of disability” Interview 12, health provider.

Different policy solutions were identified to improve leadership on disability inclusion. Government officials and health providers suggested the implementation of dedicated disability units at central and regional levels, while members of parliament proposed a new interministerial governance. Other participants proposed strengthening existing leadership or reinforcing interdepartmental and multisectoral work.

Finally, implementation is perceived to be affected by gaps in human resources. Participants identified a lack of personnel to implement additional services, lack of training among health teams about disability, and high health professional turnover.

Low monitoring of disability inclusion

Government officials, health providers, and civil society actors observed limited monitoring of disability inclusion in general healthcare policies. For example, they reported that the current National Health Strategy includes indicators on health conditions but not on disability. Government officials, health providers, and members of parliament suggested that monitoring could be strengthened through official complaints or consultations with civil society. Finally, international and civil society actors highlighted the need for an independent disability monitoring mechanism in Chile.

Discussion

This health policy analysis on disability in Chile included a content analysis of 12 policy documents on general healthcare and 15 key informant interviews. Disability was mentioned in nearly all health policy documents reviewed (92%). However, 50% of policies had low or no policy commitments to disability. Prevention was the main human rights concept reflected across policies, while Privacy was the least referenced concept. Furthermore, interviews revealed a fragmented disability movement and health policy, related to a dominant biomedical model of disability. It appeared that disability was not prioritized in the health policy agenda due to ineffective mainstreaming of disability from Government and the limited influence and engagement of civil society in policy processes. Moreover, the limited existing policy framework on disability inclusion is not being implemented. Lack of financing, leadership, and human resources were attributed to this implementation gap, coupled with low monitoring of disability inclusion.

Most mainstream Chilean health policies analysed in this study included at least one core human rights concept of people with disabilities. In contrast, previous studies using the EquiFrame found more limited reference to people with disabilities in water, sanitation and hygiene (WASH) policies of Nepal, Bangladesh and Cambodia [22, 23]. Similarly, an international study on WASH policy during the COVID-19 pandemic found gaps in attention to disability [38]. Whilst reference to disability was higher in Chile, the low policy commitment to disability in Chile’s health policies was consistent with previous research on WASH reporting almost non-existent actions for disability [22]. Our findings indicated that policies mainly focused on the prevention of health conditions, although with a stronger emphasis on preventing disability rather than improving access to preventive healthcare among people with disabilities. In contrast, previous analyses highlighted a focus on infrastructure and information accessibility [22, 23, 38].

Our findings showed only an incipient inclusion of disability and human rights perspectives in health policy. This appears not to be exclusive to disability, however, but also more generally. A policy analysis of 171 documents found a lack of human-rights perspective in public policy in Chile [36]. In addition, previous studies in Chile analysing disability-specific policies and programs found varying levels of inclusion of health as a right of people with disabilities [25,26,27,28]. Nevertheless, our findings suggest a continuation of a biomedical framing of disability, which remains engrained in health systems [39]. Health policies were described as hyper-focalized by health conditions or impairment type. Similarly, the disability movement was depicted as fragmented by medical diagnoses. Their influence seemed to be limited to health needs assessments without further involvement in policy processes, even though their participation in policies that concern them is imperative [2, 4]. This has been pointed out as one of the weaknesses of the Chilean Health System, where there is a lack of engagement with other stakeholders of civil society in public health [31].

Our analyses suggested that there was some inclusion of disability in government discourse, but with poor policy implementation strategies and resources. This has been similarly observed in African Union Policies [40] and in the Philippines [41]. Thus, this raises questions about both the quality of health policies but also the actual prioritization of disability in Chile. An analysis of Chilean public policy with a human rights approach found that policy instruments were of low quality, as they lacked structure, budget, and mechanisms for monitoring, accountability and participation [42]. Additionally, disability was regarded as an issue of “low politics”. During the COVID-19 pandemic, Chile prioritized populations within national plans based on their clinical risk, whereas the health systems of the Bahamas, Mexico, and Peru prioritized populations given their vulnerability (e.g. people with disabilities and migrants) [43]. Despite Chile‘s prioritisation of people with certified and severe disabilities for COVID-19 vaccination [44], evidence suggests that the government lacked a comprehensive strategy to fully address the needs of all people with disabilities [20]. Furthermore, questions on disability were excluded from the pandemic version of a national survey, a key instrument used to identify and prioritise groups for public policy [21].

Poor policy commitment to disability in paper is compounded by the lack of policy execution in practice. This issue was well illustrated in the Sexual and Reproductive Health Policy [45], which indicated no strong commitment about disability and poor implementation, also due to a lack of resources. These policy and implementation gaps may help to explain why women with disabilities in Chile have lower coverage of cancer screening services [9, 10] and face critical gaps in SRH services [19, 46]. Challenges with implementation of disability-inclusive policies have been observed in other settings, such as in Uganda for SRH [47], and in relation to COVID-19 responses in South America [20].

Some limitations of this study should be noted. The lack of mainstreaming of disability and coordinated action was reflected in the poor harmonization of disability models and terminology across health policy documents. This issue was evident in the previous 2011–2020 National Health Strategy of Chile, whose disability indicators could not be monitored due to changes in the conceptualization of disability [48], and it has been an issue similarly observed for older people in Chile [49]. Therefore, as we only considered the explicit mention of people with disabilities, some references of groups that could have experienced disability could have been missed (e.g. children with special healthcare needs, elderly with dependency). Furthermore, health policies using universal terms (e.g., “all”, “entire population”, “everybody”) could have implicitly included people with disabilities. However, it has been recognized that not explicitly targeting minorities or vulnerable groups could further perpetuate health inequities [1, 34, 50].

Moreover, participants had different conceptions of health policy, and the type of documents they translated into, which has been previously found [42]. Thus, there was not a complete overlap between our document selection and what participants referred to as health policy. In addition, our identification of documents could have been subject to selection bias and some health policies may have been missed. We also acknowledge the relevance of other social determinants of health; however, these were beyond the scope of this study [15]. Future assessment could be enriched with the analysis of additional multisectoral policies (e.g. housing, transportation, etc.). Despite these limitations, the strengths of this study lie in using a structured tool that allowed a systematic and independent assessment of documents by two reviewers who were native Spanish speakers and familiar with the context. In addition, data could be triangulated with information from key informant interviews.

Conclusion

Improvements are needed in both the development and implementation of disability-inclusive health policies in Chile, to support the achievement of the right to healthcare for people with disabilities, and ensuring that the health system truly “leaves no one behind”.