The challenges in achieving the right to health
Simon Drees and Rebecca Forman
One billion people live with disabilities - roughly 15 percent of the world’s population. This includes those born with disabilities and persons who acquire disabilities in their lifetime. The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2006 defined persons with disabilities as “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.” Health is one area in which these obstacles often interact, leading to particular inequities for persons living with disability. What are the general challenges persons with disabilities face, and how should they be addressed by health policy?
The UNCRPD specifically mentions the right to health without discrimination on the basis of disability, as well as the need for states to ensure access to health services and rehabilitation for disabled persons. One key goal in ensuring good health and wellbeing is Universal Health Coverage (UHC). Fundamentally, it is about who can access services (population coverage), what is covered (service coverage), and how this healthcare is financed (financial coverage). While some states have achieved UHC, significant inequities within those systems often remain, which led to particular injustices for persons with disabilities.
Many healthcare structures and programs are not designed to be accessible to those with long-term physical or mental impairments, highlighting key issues surrounding accessibility. For example, diagnostic devices might not be built to accommodate someone using a wheelchair, thus impeding their use. Persons living with a disability are also more likely to need assistance with transportation and assistive devices than those without disability. These mechanisms are not just costly for the individuals who require them but are not always feasible in certain contexts. For example, in a study from Ghana on challenges women with disability face in accessing and using maternal healthcare services, unaffordable public transportation was mentioned as a barrier to accessing healthcare services.
Studies also show that when people with disabilities do seek healthcare, they often face issues with quality of care. One example might be that healthcare professionals have trouble communicating with a patient with a hearing impairment, which could lead to a wrong diagnoses or low therapeutic compliance. Furthermore, attitudes of prejudice still exist even among health professionals, and medical staff are often not trained to properly accommodate the special needs of those with disabilities.
In terms of financing, disabled persons are also more likely to face higher health costs and face catastrophic health expenditure. In a US-based study, individuals with cognitive limitations had average healthcare costs of $11,427 annually, while individuals with physical disabilities had average healthcare costs of $10,288 annually, and individuals without disabilities had average healthcare costs of $2,375 each year.
These injustices are highly problematic. Evidence shows that persons with disabilities have greater demand for healthcare than those without disabilities: they are more likely to be unemployed, have an unhealthy diet and suffer from substance abuse than persons without disabilities. Additionally, persons with disability are at a higher risk of being victims of violence than persons without disabilities, with women and children being disproportionately affected. All of these factors are linked to a decline of mental and physical health.
In addition to structural issues mentioned above, this also means that persons with disabilities are particularly affected by gaps and issues within these systems: the UN Flagship Report on Disability and Development in 2018 outlined that “42% of persons with disabilities versus 6% of persons without disabilities perceive their health as poor.” Furthermore, those with disabilities “are more than three times as likely to be unable to get health care when they need it.”
Because of the magnitude of these challenges, some argue that the SDGs and more specifically UHC can’t be achieved if the needs of disabled persons are not addressed more prominently. The Convention on the Rights of Persons with Disabilities together with an increasing number of reports, such as the UN Flagship Report on Disability and Development, has directed more attention to disability rights. There has also been an increased research interest in disability: PubMed, the dominant search engine for research in life sciences and biomedical topics, listed about 6000 scientific articles mentioning the word disability in 2006, while in 2018 that number was more than 13,000. All of this points to a paradigm change, where disability rights and health are finally discussed more prominently, and more evidence is available to shape policy.
On the other hand, quantitative data on health outcomes, which would provide a strong argument for legislative action, is still lacking. Improving research and monitoring is thus explicitly mentioned in the UNCRPD. The document also outlines other various ways to realise the right to health and improve access, such as the identification and elimination of barriers to access. Simple changes which could have great impacts on the health and wellness of people with disabilities include provider training programs (and checklists for providers), in which health personnel learn about various disabling conditions, the adjustments to medical procedures that disabilities may require, and the experience of patients living with disability and how best to care for and accommodate them.
Sometimes a small intervention, such as providing someone with an assistive technology like glasses, can change their whole life, ultimately allowing them to study, work, and participate in hobbies they would not have otherwise been able to become involved in.
Getting to the root of the problems outlined here will be a difficult but necessary endeavour, in order to break a vicious cycle, one where disability is often both a risk factor and a result of disease. The UNCRPD constitutes a powerful normative legal basis for promoting the rights of disabled persons. Explicitly including goals in other key documents, such as the follow-up to the Sustainable Development Goals, will be needed to further raise awareness and increase accountability. Overall, continued advocacy to keep disability rights on the forefront of the human rights agenda is vital to achieving the right to health for all persons with disability.
This article was first published as part of LSESU Amnesty International Society’s annual human rights journal ‘A Climate of Change’.