Faced with many barriers and less able to maintain social and physical distance, persons with disabilities are at greater risk of contracting COVID-19 and falling severely ill as a result of the disease. However, in the EU they have not been explicitly included in priority groups for vaccination.
National vaccination strategies do not have clear-cut criteria for prioritising persons with disabilities (PWDs) to receive the COVID-19 vaccine, with the exception of those that are institutionalised or at extreme risk of infection due to, for example, organ or stem-cell transplants.
Instead, in many Member States PWDs cannot be certain whether the condition behind their disability will make them eligible to receive the vaccine before people of the same age in the general population.
Loosely defined national rules about which people belong to non-age related priority groups, coupled with the acute shortage of vaccine supplies in Europe and vaccine hesitancy, have led to confusion and chaos on the ground in quite a number of cases, leaving many PWDs at the bottom of the waiting lists for vaccination.
The situation varies not only from country to country, but also from one region to another, according to the findings of the hearing COVID-19 vaccine rollouts and persons with disabilities, held by the European Economic and Social Committee (EESC).
The remote hearing was organised by the EESC's Thematic study group on disability rights with the aim of taking a snapshot of the situation in Member States regarding the vaccination of PWDs in the EU and looking at ways to ensure that they are prioritised.
It brought together EESC members who are disability activists in their own countries as well as representatives from the European Public Health Alliance (EPHA) and the World Health Organisation (WHO). The event was moderated by the director of the European Disability Forum (EDF), Catherine Naughton.
Countries have to understand that PWDs are less able to maintain the required social distance for obvious reasons. This is why we want to stress the importance and urgency of protecting the people who are in a more vulnerable situation health-wise, said Pietro Barbieri, president of the EESC's thematic study group on disability rights, as he opened the hearing.
We hope that the EU will take into account the situation of PWDs and not just leave this up to countries on the basis of certain indicators.
In its guidance on vaccine strategy from October 2020, the European Commission made a generic but explicit reference to certain vulnerable groups that should be prioritised in inoculation campaigns, including people who cannot socially distance and those whose health status puts them particularly at risk, but disability was not specifically mentioned.
In its guidelines, the WHO acknowledges that, for several reasons, PWDs may be at greater risk both of contracting the disease and of experiencing the most severe form of it. The WHO SAGE Roadmap for prioritising the use of COVID-19 vaccines in the context of limited supply places PWDs in a sociodemographic group that is at risk of severe disease or death and recommends that they be vaccinated in Stage II, during which 11-20% of the population receive their shots.
Yet without clear classifications, and once it became clear that vaccines would not be immediately available for everyone, the situation on the ground became chaotic. Giving a brief overview of the state-of-play in their own countries, the EESC members stressed the often pivotal role played by disability organisations across the EU to ensure that PWDs not living in institutions and their carers received the vaccine at the same time as other vulnerable, prioritised groups.
BALTIC AND SCANDINAVIAN COUNTRIES
In Lithuania, following active advocacy by disability groups, the government agreed to include parents caring for children with disabilities as well as other carers in priority groups. This was not the case in the beginning, said the Lithuanian member Dovile Juodkaite, who talked about the situation in her own and other Baltic countries.
Unlike other Scandinavian countries, which classify disability as a risk factor for severe cases of COVID, Denmark now mainly prioritises according to age. This has led to considerable confusion, with poor definitions of those who fall within priority groups. As a result, GPs, hospitals and individuals were confused about who would be vaccinated first, said the EESC's Danish member Sif Holst.
In Denmark the communication of the vaccine programme has been poorly executed. No one is told which category they belong to or when they can expect to be vaccinated, Ms Holst said.
Those not categorised as belonging to a priority group will be vaccinated strictly according to age criteria. This can lead to a 30-year-old person with Down Syndrome or multiple sclerosis waiting their turn alongside people of the same age who do not have a disability.
ROMANIA AND GREECE
EESC member Tudorel Tupilusi, who heads the organisation for blind people in Romania, said the Romanian disability organisations had successfully lobbied the government to prioritise non-institutionalised PWDs during the second phase, so that they can receive their jabs alongside people aged 65 and older.
However, there were
hiccups and bumps at the beginning, as at first PWDs could only get an appointment to receive the vaccine via the local authorities. This would have dragged out the whole process, but the system changed following an intervention by disability groups. As a result of many issues, the number of Romanians with disabilities who were vaccinated by March remained low, with only 3 000 receiving both doses.
In Greece, disability organisations started campaigning for PWDs to be prioritised before the vaccine rollout in December, saidthe EESC's Ioannis Vardakastanis.
Disability organisations had both a strategic and operational role, developing close cooperation with the authorities and securing priority for many PWDs. Now they are trying to secure vaccines for blind and visually impaired people as well as tetraplegics under the age of 60.
SPAIN, ITALY AND FRANCE
The Spanish vaccination strategy has been updated on four occasions. It prioritises PWDs if they are in nursing homes or in sheltered accommodation, if they have assistants and carers and if they receive services in shared spaces, such as day centres. Nevertheless, it does not explicitly prioritise people with physical or bodily disabilities, for example, despite the fact that such disabilities do increase their risk of severe illness.
This group is waiting to see if the illness behind their disability will place them in the priority category – they don’t know their ranking in the vaccination order. This lack of certainty is unacceptable, said the EESC's Miguel Angel Cabra de Luna, adding that while it was perfectly understandable that age should be a factor, other situations that make people vulnerable to COVID should also be considered.
In the absence of standardised criteria, Spanish communities and regions have come up with different rules concerning which conditions enable people to be first in line for a vaccine and which do not.
Such differences between regions are also pronounced in Italy, with people with the same condition being vaccinated in one region but not in another, Mr Barbieri said.
He stressed that PWDs were not prioritised at first, but the authorities tried to rectify this in early January as a result of pressure from disability associations and an article in the media highlighting the fact that the vaccination plan
forgot about PWDs and their families.
Following a change of government and with the onset of vaccine shortages, a new vaccination plan was created which categorised vaccine eligibility. The result was often absurd inequalities as well as total confusion and chaos, Mr Barbieri said.
For example, PWDs in Lombardy will start to receive their first shots on 15 April, whereas due to a weakened healthcare system, Calabria will not take bookings for PWDs before May.
Albert Prevos from the French Council of Disabled People for European Affairs (CFHE) stressed that PWDs not living in residences were also vulnerable and should be prioritised, which has not been the case in France:
People who live alone should not be victims of the shortage of vaccines, yet they are often forgotten about.
EXPERTISE ON THE GROUND AS A GAME CHANGER
Satish Mishra from the WHO said his organisation relied on civil society to ensure that the WHO's recommendations were implemented by governments.
Among other things, we recommend that governments consult with PWDs, their support networks, and representative organisations when developing and implementing national vaccination plans to identify and address barriers to accessing vaccination activities, Mr Mishra said.
According to EPHA's Yannis Natsis, thanks to their expertise on the ground, civil society organisations have an immensely important role as they can help the EU better understand how to define vulnerability. What's more, they can highlight the risks for people with many different kinds of disabilities so that EU countries recognise them as a priority as well.
Mr Natsis also thinks it is
the right time to have the conversation about national vaccine equity in Europe and to look at how we can include and prioritise vulnerable and disadvantaged groups. As for the EU, it is important to elevate the issue of vaccine equity to the political level in Brussels.
Scarcity arguments in the broader sense have always been used against vulnerable groups – this is something of a déjà vu, it was there before COVID. Let's try to make sure it is not there after COVID. Let's seize this opportunity to turn this into a positive, long-term sustainable change for vulnerable populations, Mr Natsis concluded.