Fostering Health Equity for Persons with Disabilities in the EU

People with disabilities often face a myriad of challenges when realising their right to health; Markaya Henderson from the European Disability Forum tells us why more must be done to promote disability-inclusive healthcare

When we think of healthcare, we might think about a doctor’s office, someone receiving treatment, or a hospital. However, many other places and interactions are part of our experience of healthcare, such as booking appointments, transport, and healthcare decision- making. These aspects can have serious impacts on access to care, on the quality of services provided, and, ultimately, on people’s health and wellbeing. That is why persons with disabilities have significantly higher unmet medical needs, poorer perceptions of their health, poorer access to healthcare, poorer outcomes and higher mortality rates, not only in the EU but across the world.If we want to address this inequity, we need to assess the healthcare experience more comprehensively to barriers faced beyond the treatment room.

Barriers to health equity for persons with disabilities

Persons with disabilities face various accessibility barriers from the very first moment they try to access healthcare. When persons with disabilities try to make appointments, they encounter inaccessible websites, booking systems and inaccessible or inadequate communication with healthcare staff. For example, services that only allow booking through the telephone necessarily exclude deaf persons from accessing them on an equal basis. Similarly, there is seldom readily available information about the accessibility of healthcare facilities and services, leaving persons with disabilities to wonder if they will be able to even enter the building or understand the health and treatment information given to them.

Travelling to and from appointments presents more barriers. The inaccessibility of public transport and the external built environment (such as pavements and accessible road signalling) have a direct impact on accessing healthcare facilities. As a result, persons with disabilities may need to book more expensive private transportation to attend appointments, increasing their financial burden. This may present an insurmountable barrier for many persons with disabilities, who are at a higher risk of poverty than the general population. They will also need more time to travel to and from the appointment, meaning they might need to take half a day or more when someone else would need a couple of hours.

Once they arrive, there is no guarantee that the hospital or facility will be accessible to them or that trained staff will be ready to welcome and assist them.

Then, in the treatment room, accessibility barriers persist with a lack of adapted equipment and inaccessible provider communication. This may be further aggravated by stigma, discrimination and lack of cultural competence with regard to disability on behalf of healthcare providers. Far too few doctors and nurses receive training on disability, either in medical school or in specialised training courses. That leaves many ill-equipped to offer reasonable accommodations, and they may make false assumptions about the health needs of persons with disabilities. There is the common mistaken belief that persons with intellectual disabilities are asexual, for example. This leads doctors to avoid the topic in regular care and refer them less often, depriving them of essential sexual and reproductive health services.

At this stage, persons with disabilities may also come up against barriers to informed consent, either through the lack of accessible information about their diagnosis or treatment options or through legal deprivation of the right to make decisions about one’s own healthcare in favour of substituted decision-making (e.g., guardianship). In its most egregious form, substituted decision-making may result in life-altering medical procedures, including forced sterilisation, and traumatising experiences produced by forced psychiatric treatment and placement.

The future of healthcare must be disability-inclusive

Even a reader must be exhausted after this stroll through the patient journey. It is not difficult, then, to understand why persons with disabilities experience such stark health inequities. This understanding of barriers can help us plan a new journey forward with fewer barriers that are more accessible, less costly, more informed and more inclusive.

Guiding this new journey is the United Nations Convention on the Rights of Persons with Disabilities. This international treaty details various fundamental rights that offer a blueprint for greater health equity. Alignment with the Convention is a surefire way to foster health equity for persons with disabilities.

The EU and Member States must work collaboratively, respecting their shared health competencies and following the principles of the Convention, to promote the health and full inclusion of persons with disabilities. A necessary first step down this path is improved data collection and disaggregation to develop informed and targeted policies and programmes.

Another key action for the EU and Member States is to prohibit discrimination in the field of healthcare. Not all Member States have legislation that prohibits discrimination on the basis of disability, and the EU has no framework in place to ensure non-discrimination outside of employment. The adoption of the Equal Treatment Directive at the EU level would help to provide necessary protections for persons with disabilities, but it must also be complemented by equal recognition of before the law. Persons with intellectual, psychosocial disabilities and mental health problems must be recognised and supported in healthcare decision-making to ensure informed consent, thereby prohibiting forced treatment of all kinds.

Member States should also adopt mandatory training for healthcare providers to foster greater awareness of the rights and healthcare needs of persons with disabilities. This will allow for more accessible communication, which must go together with improved accessibility of healthcare facilities, equipment, and transportation.

This is by no means an exhaustive list of actions needed. The barriers to health and wellbeing extend beyond the site of healthcare service provision and require a concerted effort by policymakers in all sectors. What is most important is to centre the voices and experiences of persons with disabilities, to highlight the barriers they face, and ensure their preferred solutions are in place to create meaningful and lasting change.