The health system in Chile, with respect to disability-inclusive health, obtained an overall low average score of 49% (Figure 2).
System-level components
1. Governance
1.1 UNCRPD (Score=1)
Chile ratified the UNCRPD in 2008 and subsequently adopted specific measures for action (e.g. it created the national disability law Nº20.422, restructured the National Disability Agency (SENADIS) of the Ministry of Social Development and Family, and expanded the Rehabilitation Program) [22, 23].
1.2 National Law (Score=1)
Law No. 20.422 "Establishing Rules on Equal Opportunities and Social Inclusion of Persons with Disabilities" prohibits discrimination in health and demands the implementation of reasonable accommodations for people with disabilities [24]. Additional disability-related laws exist, which protect access to healthcare for people with disabilities. For instance:
- Law Nº 20.584, Regulates the rights and duties of individuals in relation to actions related to their healthcare [25].
- Law Nº21.331, On the recognition and protection of the rights of persons in mental healthcare [26].
- Law Nº21.545, Establishes the promotion of inclusion, comprehensive care, and the protection of the rights of persons with autism spectrum disorder in the social, health and educational spheres [27].
1.3 National Health Policy or Decree (Score=1)
Currently, there is no national policy on inclusive health for people with disabilities. However, National Supreme Decree Nº2 approves the regulations governing the right to preferential care [28]. It guarantees priority access for people with disabilities to appointments for primary care, specialists, emergencies, medicines, and examinations, and establishes measures for its implementation.
1.4 National Health Sector Plan(s) (Score=0.2)
The National Health Strategy 2030 includes objectives for functioning and disability [29]. It prioritizes specific health conditions, including childhood developmental disorders, rare diseases, musculoskeletal disorders, autism spectrum disorders, rheumatoid arthritis, and severe dependency. However, it does not include actions and targets for general healthcare and specialist services for all people with disabilities. It also does not include basic statistics about people with disabilities and health.
1.5 National Disease Plans (Score=0)
National plans exist for certain diseases (e.g. HIV/AIDS, cancer, silicosis, etc.), and although these plans are described as universal, in some cases, certain groups are prioritized. For instance, the National Plan for the Prevention and Control of HIV/AIDS, targets only migrants and indigenous peoples [30]. However, the plan does not explicitly mention people with disabilities to ensure their access to testing, treatment, and information programs.
1.6 Cross ministry governance (Score=1)
Law Nº20.530 established the Interministerial Committee on Social Development and Family. It is chaired by the Ministry of Social Development and Family and includes the participation of the MoH [31]. The committee advises on the government's social policy and facilitates coordination, guidance, information, and agreement among its members, including on disability issues. There is collaboration between the MoH and SENADIS in the certification and qualification of disability, provision of AT, and implementation of Law Nº21.545 on people with Autism Spectrum Disorder [23]. However, this collaboration does not occur for inclusive health for all people with disabilities. Furthermore, there is no technical counterpart in SENADIS with an exclusive role in healthcare access.
2. Leadership
2.1 MoH Leadership (Score=1)
Leadership on disability inclusion is diffused and different teams address disability-related issues within the MoH. The Department of Rehabilitation and Disability of the Subsecretariat of Public Health was considered as the lead on disability inclusion by interviewees. The department endorses disability inclusion, although its stated role focusses on disability prevention and habilitation and rehabilitation strategies, not on general healthcare for people with disabilities [32]. This department has historically addressed only the needs of people with physical and sensory disabilities, while the Department of Mental Health has addressed the needs of persons with psychosocial disabilities [33]. Additional teams that address disability-related issues include the National Commission of Preventive Medicine and Disability (COMPIN) and the rehabilitation officers of the Division of Healthcare Network Management and the Division of Primary Care.
2.2 National health sector coordination (Score=0)
There is no national health sector coordination with formal representation of people with disabilities at the highest level. Current temporary participation occurs for certain health conditions and mental health services, but not on overarching disability-related issues. For example, the ENLACE task team includes representatives of the MoH and organizations of people with autism to implement the new law on autism. As another example, some people with psychosocial disabilities participate in the Mental Health Advisory Council 2022-2024 [34] and in the National Commission for the Protection of the Rights of Persons with Mental Illness [35].
2.3 Pandemic preparedness structures (Score=0)
The National Pandemic Response Commission COVID-19 is made up of external scientific advisors, technical teams from the MoH and an inter-ministerial committee [36, 37]. Although civil society could participate, no formal representation of people with disabilities exists. However, SENADIS led a temporary Intersectoral Taskforce on Disability and COVID-19 with representation of people with disabilities [38]. The taskforce developed recommendations for the care of people with disabilities in health services during the COVID-19 pandemic [39].
3. Health Financing
3.1 Disability inclusion budget (Score=1)
The Department of Rehabilitation and Disability of the MoH receives USD 18 668 per year for governance in rehabilitation, disability prevention, and inclusion. However, the budget is considered by interviewees to be insufficient to implement public policies on inclusive health. Currently, the Subsecretariat of Healthcare Networks has no budget for the implementation of the law on preferential care for people with disabilities [40].
3.2 Reimbursement adjustments (Score=0)
There are no health insurance reimbursements or adjusted capitation rates for people with disabilities in FONASA or ISAPRES. However, all beneficiaries of FONASA, including people with disabilities, can apply for reimbursement of expenses associated with the purchase of prostheses and orthoses, or travel associated with the purchase through the public system [41]. It reimburses hip prostheses, cane or tripod, orthopaedic insoles, optical lenses, hearing aids, crutch, rubber heel pad, and spinal orthosis.
3.3 Rehabilitation/AT budget (Score=1)
In 2023, the Subsecretariat of Healthcare Networks of the MoH had an annual budget of about USD 15 941 million for the Comprehensive Rehabilitation Program in Primary Healthcare. It also had a 2022 annual budget of USD 38 976 million for the financing of AT, through the Explicit Health Guarantees (GES) scheme and the Ricarte Soto scheme, which establishes a system of financial protection for high-cost diagnosis and treatment regardless of health insurance type [42, 43]. In addition, SENADIS had an annual 2023 budget for its AT Program of USD 6540 million.
4. Data and Evidence
4.1 Maturity of disability and health data collection method (Score=0.33)
The main data collection on disability and health is through population-based surveys [7], including the national disability survey from 2022. Census 2024 will incorporate questions on disability [44]. There is a National Register of Disability, where in June 2023 only 23% of the population with disabilities (n=625 848) were included [45]. Currently, the register facilitates access to social benefits, but it does not keep integrated statistics with health information of people with disabilities. Furthermore, health information records collect data on disability status in public and private health facilities [46]. This data is mandatory and requires the Community Assessment of Performance Evaluation (IVADEC-CIF) by health professionals to determine the origin and extent of disability of the person. However, data collected from health facilities do not include health indicators of people with disabilities [47].
4.2 Quality of disability and health data collection method (Score=1)
The disability national survey from 2022, is based on the Model Disability Survey, a tool recommended and validated by the World Health Organization, is nationally representative and disaggregates results by six types of disabilities [7].
4.3 Maturity of disability and health data usage (Score=0.5)
Data on disability and health collected through national surveys are analysed and published [7]. The data are used to define targets in the national health strategy and for budget allocation. However, only findings related to rehabilitation and AT have been used to guide policy changes, in contrast to general healthcare of people with disabilities [43, 48]. Available statistics on disability and health are currently not harmonized. Consequently, there is a lack of robust figures on the total population with disabilities and their needs at regional/community level.
4.4 Quality of disability and health data usage method (Score=1)
Data collected on disability and health are analysed and published in public repositories within one to two years of collection [7, 49]. The reports describe the methods of data analysis, maintain analyses at national and regional level, and full databases are shared for different statistical software.
Service delivery components
5. Autonomy and Awareness
5.1 Organizations of People with Disabilities advocacy (Score=1)
Some people with disabilities and OPDs have advised the MoH. For instance, through the current ENLACE task team for the implementation of Law No. 21.545 for people with autism or the Mental Health Advisory Council [27, 34].
5.2 Autonomy and awareness (Score=0)
There is a lack of data on autonomy and awareness of healthcare access for people with disabilities from within the last ten years from population-based surveys and qualitative data.
5.3 Accessibility of health information (Score=0)
The Ministry of Health’s website and its partner websites, which are the main sources of online health information, have few accessible formats available [16, 50]. For example, they feature accessibility tools (e.g. text-to-speech function), and some videos include sign language interpretation. However, no accessible formats such as easy-to-read, sign language interpretation on all videos, Braille, or information for caregivers are observed. Nor do links exist to request the delivery of health information in alternative formats.
6. Affordability
6.1 Health coverage (Score=0.5)
Coverage associated with disability: There are stipulations that guarantee financial coverage for people with certified disabilities. For instance, free healthcare is provided in the public network to people with severe or profound disabilities, under 18 years of age, affiliated to FONASA, and belonging to the 60% lowest socio-economic levels, through the disability subsidy [51, 52]. There is also an adjustment of coverage for people with disabilities affiliated to FONASA for rehabilitation services (physio, occupational, and speech therapy) received outside the public network [53]. This benefit does not modify service fees but eliminates the annual care cap and also applies to ISAPRES beneficiaries.
Coverage associated with medical diagnoses: The GES scheme guarantees financial protection for 87 health conditions, some that could lead to disability, including depression, schizophrenia, bipolar disorder, arthritis, Parkinson's disease, epilepsy, multiple sclerosis, bilateral hypoacusis, refractive errors, Systemic Lupus Erythematosus, and retinopathies [54]. GES also covers orthoses and AT, cataract surgery, and COVID-19 rehabilitation. Similarly, the Ricarte Soto scheme covers the diagnosis (in some cases) and treatment of 27 health conditions, some of them possibly associated with disability, such as multiple sclerosis, rheumatoid arthritis, bilateral sensorineural hearing loss, Systemic Lupus Erythematosus, among others [42]. Finally, FONASA launched a Diagnosis Associated Payment voucher for the diagnosis and treatment of people with autism up to 18 years of age outside the public network with fixed service fees [15].
Universal coverage: The entire population affiliated to FONASA receives free medical care in the public network [55]. As a result, people with disabilities would have access to free healthcare because they are covered by FONASA and not because they have a disability. However, 12% of people with disabilities are not affiliated to FONASA and so will not have free access to medical care through this route [7]. Moreover, health coverage is not free if people with certified disabilities choose to receive healthcare outside the public network, either because of access, timeliness or quality of care. Furthermore, only certain pharmacological treatments are covered by FONASA.
6.2 Transport subsidy (Score=0)
There is currently no national transport subsidy for people with disabilities in Chile [56]. Some local subsidies exist at regional or municipal level, where vehicles are available for the transport of patients with disabilities, although they typically focus on people with physical impairments.
6.3 Disability allowance (Score=0.5)
There is a disability subsidy for people under 18 with severe or profound disabilities, of any impairment type, who are among the 60% lowest socio-economic levels of the population [51]. This group receives a monthly monetary benefit of USD 112 (as of November 2023). This subsidy includes free medical coverage in the public network for FONASA affiliates. Adults with certified disabilities could receive a disability pension (USD 225), if they belong to the 80% lowest socio-economic groups [57]. However, there is no disability allowance for all people with disabilities in Chile.
6.4 Co-payments (Score=0)
FONASA beneficiaries, including people with disabilities, have zero co-payments when receiving medical care in the public network [55]. However, this benefit does not apply to care received by private healthcare providers. In addition, 12% of people with disabilities who do not belong to FONASA are exempted from receiving this benefit.
7. Human Resources
7.1 Training of medical doctors (Score=0)
There is no mandatory national training standard on disability for medical schools, including medical and non-medical aspects. Each medical school determines the curriculum for its students, although the Single National Medical Knowledge Test (EUNACOM) would influence the standard of undergraduate training [58]. At present, EUNACOM does not include an exclusive component on disability as such, only health conditions that could result in disability (e.g. mental health disorders, hearing loss, low vision, etc.).
7.2 Training of nurses (Score=0)
There is no national curriculum for nursing schools; each school determines their own curriculum. However, there is a voluntary National Nursing Examination (ENENF) that could influence the standard of training [59]. The ENENF includes questions on health conditions (e.g. children and adolescents with special healthcare needs) but there is no exclusive content on disability.
7.3 Training of Community Health Workers (CHWs) (Score=0.33)
The training manual for CHWs of the Primary Healthcare Division of the MoH includes some elements regarding legal regulations and rights of people with disabilities, use of language around disability, and OPDs [60]. However, this training is not mandatory.
7.4 Representation of people with disabilities in health workforce (Score=0)
There are no official records of the number of health workers with disabilities. However, it is estimated that between 0.05 to 3.5% of health workers in hospitals (Coyhaique Regional Hospital, La Florida Dra. Eloísa Díaz Hospital, and Peñaflor Hospital) have disabilities, which is lower than expected for the working age population with disabilities (at least 4% for high-income countries, such as Chile) [61].
7.5 Satisfaction (Score=0)
There are no surveys on user satisfaction or quality of treatment in health facilities that disaggregate data by disability and allow comparison with the population without disabilities, or qualitative studies in this area.
8. Health Facilities
8.1 National accessibility standards (Score=1)
There are national accessibility standards for the infrastructure of all public spaces, including both public and private health facilities [62–64]. For example, health facilities must have toilets for people with disabilities, ramps, handrails, etc. There are also universal accessibility standards for web systems and websites of state administration bodies [65]. However, there are no mandatory technical national standards for health communication and information, except for the mandatory provision of sign language interpretation and closed captioning [24].
8.2 Accessibility audit (Score=0.33)
In the last ten years, the MoH has neither conducted nor commissioned nationally representative accessibility audits of healthcare facilities. However, an independent evaluation in the northern Atacama region of 18 primary healthcare facilities found low levels of accessibility to information and participation [66].
9. Rehabilitation Services and Assistive Technology
9.1 National assessments of rehabilitation or AT (Score=0)
There is no national assessment of rehabilitation or AT. However, an inter-ministerial taskforce was recently established to design the National System of Assistive Technology with a unified catalogue and register of AT [67].
9.2 Cross-ministry coordination for rehabilitation services and AT (Score=1)
Currently, there is an inter-ministerial taskforce for the development of a national system of AT in which several ministries participate, including the MoH [67].
9.3 Trained workforce available to provide rehabilitation services and AT (Score=1)
There are about 19.8 physiotherapists per 10,000 inhabitants in Chile, meeting the standard expected for high-income countries [68]. In addition, there are 6.7 occupational therapists, 9.9 speech therapists, and 40.3 psychologists per 10,000 inhabitants.
Recommendation and priority actions
A total of 14 recommendations were considered (Table 4) and three priorities were defined and agreed on to progress disability-inclusive health in Chile in terms of governance, leadership, and human resources:
- Formulate a National Policy on Inclusive Health for People with Disabilities. It was considered important that this policy is both comprehensive and specific to the diverse health needs, has a budget for implementation, adopts an inclusive approach in all health programs, and is led by staff with disabilities and/or with the permanent and binding participation of OPDs in the design, monitoring, and evaluation of its implementation.
- Ensure formal representation of people with disabilities, including through their OPDs, in the highest-level health sector coordination structure and in pandemic preparedness structures, avoiding silos, and duplication of existing participatory bodies. For example, through a permanent advisory committee on disability and all health matters.
- Establish a mandatory training program on disability, with a human rights perspective and including both medical and non-medical aspects, for health workers (professional, technical, and administrative staff) in both public and private health facilities.
Additional, but not prioritized recommendations, would be incorporated into the prioritized actions (Table 4). For example, the national policy on inclusive health should include the development of a healthcare protocol for people with disabilities, inclusion of disability targets in the National Health Strategy 2040, and of people with disabilities in national disease plans. Likewise, the training program should include the development and communication of health information in accessible formats (e.g. in web pages, prescriptions, leaflets, educational materials, etc.).