Persistent health inequalities are a huge factor behind the twofold higher mortality rate of people with disabilities, who on average die 10 to 20 years earlier than people without a disability. At the top of the list of barriers creating such inequalities are exorbitant treatment costs, inaccessible transport and health facilities, and stigma – but also a healthcare workforce that lacks proper training on disability issues
Although substantial progress has been made on disability rights in many countries in recent years, persons with disabilities (PWDs) still experience serious discrimination in getting appropriate healthcare services in the EU and globally: this was the message at a hearing held by the European Economic and Social Committee (EESC).
The level of unmet medical needs is two and a half times higher for PWDs than for the overall population, which suggests that every year millions of people in the EU have to forego healthcare as a result of their disability. They have poorer health outcomes and a poorer quality of life; they die earlier, with a life expectancy gap of 10 to 20 years; and they are also more affected by health emergencies. These differences are even starker in low- and middle-income countries outside the EU.
The hearing Towards a European Health Union and European Global Health Strategy fully inclusive of Persons with Disabilities brought together EESC members, representatives of disability organisations and EU institutions, activists and government officials. They took a closer look at what can be done to advance the health rights of PWDs under the European Health Union, and globally, through the recently launched EU Global Health Strategy and other guiding policies and initiatives.
“Discrimination in access to healthcare services is present all over Europe and all over the world. We want to make a point of this,” said Pietro Barbieri, president of the EESC Permanent Group on Disability Rights which organised the hearing.
According to research presented at the hearing by Hana Kuper, professor of epidemiology at the London School of Hygiene and the lead researcher for the Mission Billion Initiative, people with disabilities are three times more likely to have diabetes, twice as likely to be malnourished as a child or to have HIV or AIDS, and 10 times more likely to be seriously ill in childhood. They are also 50% more likely to face catastrophic health expenditure. Health system failures are the reason for their low life expectancy in about 40% of cases.
“To make health systems more inclusive, it is essential to build them with people with disabilities in mind,” said Ms Cooper. This requires providing appropriate health financing, in particular to ensure the accessibility of health infrastructure and raise awareness about PWDs’ rights and needs in this field, among both PWDs and health professionals.
The EU has been a party to the UN Convention on the Rights of Persons with Disabilities (UNCRPD) since 2011. However, Christine Redecker from the European Commission explained that the Convention’s implementation objectives have been only partially achieved, with access to healthcare for PWDs singled out as not being sufficiently prioritised in national policies.
According to Guadalupe Morales from NGO Mental Health Europe, commitments made by the EU under the UNCRPD often remain a dead letter when it comes to discrimination against PWDs, including those with mental disabilities. PWDs continue to experience stigma, as well as coercion, forced treatment and involuntary placement, and forced sterilisation, “which all remain practices in use across Europe”. Moreover, deprivation of legal capacity and substitute decision-making schemes are still considered to be a viable resort in virtually all EU Member States.
“Mental health care should be provided in the community. And service provision must be based on free and informed consent. Institutionalisation, coercion, forced treatment, suffering, and placement are human rights violations. Please don’t forget that,” Ms Morales told the hearing.
She expressed hope that the upcoming EU initiative on mental health would have the potential to address the barriers faced by PWDs in healthcare. To do this, it will have to take an integrated and comprehensive approach to mental health.
To fill in the gaps in the UNCRPD’s implementation, the EU has launched a Strategy for the Rights of Persons with Disabilities 2021-2030, which offers support to national, regional and local authorities in their efforts to deinstitutionalise PWDs and make it easier to live independently. A soon to be launched action under the EU4Health programme will develop guidelines on access to healthcare for PWDs.
“We call on Member States to close country-specific gaps and improve their health systems through the European Semester,” said Ms Redecker. “Member States can use funds, including the Recovery and Resilience Facility and cohesion funds, to modernise their health systems and improve access to healthcare by addressing specific gaps and problems.”
Pirkko Mahlamäki of the European Disability Forum stressed the importance of involving PWDs with different types of disabilities in the design, implementation and monitoring of health policies, including in the training of healthcare professionals.
“Stigma and discrimination perpetrated by healthcare providers could be avoided through better and more specific training,” said Ms Mahlamäki. “If, in their formative years, healthcare professionals have the opportunity to meet and interact with persons with different disabilities and in different life situations, they will be able to see them not as a diagnosis but as persons with many facets.”
Although some differences in health outcomes can be explained to a certain extent by the underlying health condition or impairment associated with disability, a very significant proportion are largely due to unjust factors that are avoidable and can be eliminated.
Measures benefitting PWDs will also benefit many other segments of the population – a point stressed by Sarah Collinson from the International Disability Development Consortium (IDDC). She also put particular emphasis on the importance of collecting data on health systems and possible forms of discrimination faced by PWDs. This is particularly important in the context of monitoring the implementation of national disability strategies and ensuring accountability.
TOGETHER FOR BETTER GLOBAL HEALTHCARE
An estimated 1.3 billion people globally, or one in six persons, experience disability, 80% of whom live in low- and middle-income countries. With this figure rising due to the ageing of the population and escalation of poverty, it will be crucial to make healthcare more inclusive.
Over the last few years, several guiding policies and activities have been launched addressing the health equity and rights of persons with disabilities at global level.
As presented by Marten Kivi of the European Commission, the EU global health strategy, launched last November, positions global health as an essential pillar of EU external policy and represents the external dimension of the European Health Union. It relies heavily on the Team Europe approach, meaning that the Commission will work closely together with Member States, government agencies and European financial institutions.
“The Strategy seeks to achieve universal health coverage, strengthen primary healthcare, and take action on the social determinants of health in accordance with the 2030 Sustainable Development Goals,” said Mr Kivi.
This will involve a much needed reinforcement of the role of the World Health Organization in global health governance.
Satish Mishra, from the World Health Organization (WHO), presented the WHO’s European framework for action on higher sustainable standards for health of PWDs, which identifies the specific national actions needed to achieve disability-inclusive health systems.
“Our framework takes an ambitious launching point that by 2030 PWDs are to be fully included in all healthcare planning, delivery and leadership across the European region,” said Mr Mishra. “It is important to say that government alone cannot achieve the full inclusion of PWDs and that the cooperation of all of society is important.”
The framework has four objectives – to ensure equitable access to services, to promote health and well-being, to develop disability-inclusive policies and programmes, and to build an evidence base on disability and health. It comes with a detailed implementation plan and a monitoring evaluation framework with 14 targets to aim for and 51 indicators of progress and success, which should help countries achieve the objectives.
Jesús María Martín Blanco, from the Spanish Ministry for Social Affairs, presented the Spanish national health strategy. Focused on preventive healthcare and health promotion for people with disabilities, the plan has a budget of almost EUR 140 million.
“Spain is committed to health policies based on universal and free provision of public services, human rights, a person-centred approach, a gender perspective and independent living, said Mr Martín Blanco. “The plan aims to enable people with disabilities to live independently and be included in the community through accessible and community-based housing and services.”
He added that special attention had been given to the sexual and reproductive rights of women and girls with disabilities: “We have adopted legal safeguards and declared sterilisations and coercive abortions to be violence against women.”