Questions and answers.

First our invited guest organisations, and then our guest MEP reply to our questions.

When did your organisation become aware that COVID was going to be a major challenge, and what was your first reaction?

The European Disability Forum started monitoring closely the pandemic in mid-February, specifically in relation to our internal functioning. We had a board meeting in the very beginning of March, so our director kept an up-to-date daily risk assessment also to ensure it could happen.

We started working on COVID-19 response on the second week of March, as most European governments made moves to lock down. We started by publishing the “Open letter to leaders at the EU and in EU countries: COVID-19 – Disability inclusive response” on 13 March. During that week, we also did an important work of collecting and sharing national responses, as well as helping members in collecting responses to specific questions.

(For information, the main offices of WBU are in Canada).We became aware from beginning of March through mass media, CNIB management (our host organization) and online sources. However by mid-March we became aware that it was going to be a challenge when the government declared a state of emergency and imposed a lockdown and strict safety measures including physical/ social distancing, isolation and self-quarantines. Non-essential businesses and schools were also closed down. For the safety and health of our staff, our office was closed down and we started teleworking from our homes.

In early May, when the travels to several European IAPB activities became questionable. First halted the preparations and then, according to the worsening situation the meeting activities were postponed.

As EUD is an organisation based in Brussels, we became aware of the covid-19 and its containment efforts after the Belgian government officially announced the pans for the lockdown and the quarantine, this was in mid-March.

We reacted calmly as generally our EUD staff is allowed to work from home. Therefore, we decided to fully transform our day-to-day operations into teleworking, continue business as usual, follow the regulations of the Belgian government and adapt accordingly.

What were the sources of information that you considered the most reliable and on which you based your work?

We relied on two main types of sources: official sources such as the World Health Organisation and Belgian government guidance for internal matters.

In terms of policy response, we mostly rely on our national and European members and our network of membership and partners, such as the International Disability Alliance.

Senior management of CNIB, senior government officials including Canada's prime minister and health officials.

WHO, IAPB, AAO, governmental resources, news agencies.

Official Belgian government announcements and regulations on teleworking and general safety.

How did the crisis effect your day to day work; was distance working able to be set up, was the infrastructure adaptable, did your staff and/or members feel both adequately protected and also able to contribute?

In terms of switching to remote work, the European Disability Forum was well prepared for day to day work. Some of our staff were already working remotely before the pandemic, so we had virtual structures we were able to adapt day to day activities. We were also already planning to host webinars, so we had done some previous work of ensuring accessibility, however passing all meeting and activities online proved to be a big challenge, that was very successfully taken on by our colleagues Raquel, Catherine, Loredana and Muriel.

The two main challenges were:

  • As said, switching many of our physical meetings to online meetings: even though we had good knowledge, the lack of physical meeting obliged us to pass almost everything to online, including statutory meetings. This required an important legal and logistical work to ensure that we could have different formats for online meetings and webinars, and that they were still valid.
  • The increased work due to the pandemic: after an initial pause, EU institutions resumed some of their regular activities – this means that we have to manage COVID-19 related work and work related to policy, such as preparing consultations, the Access City Award and so on. This brought a significant increase of work. We are also planning for a very increased workload on the second half of the year: we foresee that EU institutions will not postpone any work for after 2020 and will deal with the impact of this pandemic in their regular work by just increasing output and demands in the second half of the year.

Other than the face-to-face team spirit, our day to day work goes on. Our office infrastructure is well established, tele working is seamless and as staff we remain connected virtually. We feel quite protected, safe, and healthy and are able to contribute efficiently.

All activities are going on-line from home office, the communication is electronic (email, telephone, zoom).

It was relatively easy to adapt, as our work is mostly done on the work laptops that can be brought back home and via emails. We also have a shared Dropbox folder which contains all EUD files that can be necessary while working from home. Sign language interpreters can also easily work through relay video platforms, e.g. skype, zoom, SignLive.

We continue regularly having our weekly team and policy meetings and individual meetings through Zoom or WhatsApp video calls.

The staff members feel safe working from home, as they don’t have to take public transport or meet people that can infect them.

How do you think governments and other international reference organisations reacted generally? Were they ready to listen to the concerns of the disabled community?

No, they were not. We are extremely disappointed with the reactions of most governments: persons with disabilities were left for too long without access to accessible information, fears of deprioritisation in access to healthcare became true, governments imposed lockdown measures that were impossible to follow by many persons with disabilities and, once again, persons in residential institutions were utterly forgotten – worse: governments imposed measures that meant residents were often locked in their rooms, completely isolated without human contact.

We are very disappointed with these reactions that show the de-prioritisation and discrimination that persons are subject to.

There were some small encouraging notes in the last few weeks, however governments need to step up and start to systematically involve organisations of persons with disabilities in taskforces and bodies created for COVID-19 response.

The government of Canada reacted swiftly by taking immediate, significant actions to support Canadians; those in COVID hot zones were evacuated, several emergency relieve programmes and services were implemented including special financial relief benefits to employees who lost jobs, grants to  students and businesses.

Regarding the disability community, the government established a COVID-19 Disability Advisory Group, comprised of experts in disability inclusion. The purpose of the Group is to provide advice on the real-time lived experiences of persons with disabilities during this crisis; disability-specific issues, challenges and systemic gaps; and strategies, measures and steps to be taken. This group focuses on disability areas such as equality of access to health care and supports; access to information and communications, mental health and social isolation; and employment and income supports.

From the onset, the Canadian government seems to ensure that the interests and needs of persons with a disabilities are being taken into consideration, however there are some gaps such as lack of accessible information and resources.

EUD’s priority since the start of the pandemic, was to ensure that deaf persons have an equal access to information through national sign languages. Therefore, EUD has collected information from the National Associations of the Deaf in the European Union, Iceland, Norway, Switzerland and the United Kingdom on the accessibility of information in national sign languages regarding the COVID-19 and its containment efforts.

EUD emphasised that governments on all levels, national and European, are committed under the United Nations Convention on the Rights of Peoples with Disabilities (UN CRPD) to ensure full access to information for all under the UN CRPD Articles 9 and 21.

On EUD website you can now see that the governments of the Member States in the EU as well as in other countries, do respect the commitments under the UN CRPD and put considerable effort in ensuring that the information on COVID-19 containment efforts is provided in national sign languages.

EUD also highlighted that the European Commission should follow the commendable example of the national governments and ensure the same level of accessibility of information provided on the European level on the COVID-10 emergency in International Sign. We are glad to say that the EU Commission listed to our demands and made the video content produced by the EC President von der Leyen available in International Sign.

Only by having information in national sign languages on the national level, and in International Sign on the European level, deaf Europeans can have equal, full and meaningful access to information during this difficult time.

Are there any example of particular good or bad practices that you would like to point out, to help us all learn from this unprecedented experience?

You can see a lot of information on good and bad practices in our resource list.

There are lots of good practices, mostly coming from disability organisations. For example, Spanish organisations established volunteer groups to support persons with disabilities.

When governments’ and crisis response press conferences were broadcasted without sign language interpretation, deaf organisations mobilised and successfully advocated for many governments to provide them.

Organisations of autistic people successfully created media pressure to ease lockdown restrictions.

A disability organisation on the south of France provided a 24/7 helpline to students with disabilities.

Two good practices from governments include Italy, who appointed a person with disabilities to act as disability expert in its taskforce to ease lockdown measures and from Denmark who allocated an important sum to organisations of persons with disabilities so they can enact measures to combat isolation.

However, most of this happened because governments dropped the ball. In that sense, bad practices were widespread: refusing to regulate ethical guidelines on access to treatment, inaccessible communication, locking up persons in residential institutions, failing to provide protective equipment, failing to properly fund disability services. There have been multiple and continuous failures that infringed the rights of persons with disabilities.

Good Practices: a) WBU implemented a COVID-19 advocacy project for inclusive response. This includes: Live social media discussion, call to action urging governments to be inclusive in their mitigation interventions, regular emails updates to our members as well as a detailed survey to help understand the specific needs and challenges of our community. b) Adhering to health officials' recommendations here in Canada seems to slow down the pandemic (social distancing, isolation, wearing PPEs in addition to well-coordinated, sustained government announcements, information and communications. c) regular updates from our management keeps us updated and reassurance of staff safety.

Bad practices: a) Lack of accessible information and some services to our blind community.

We consider the efforts of all the EU governments to make information available in national sign languages as a positive development, as that generally increased the knowledge among the governments about how crucial access in national sign languages is to deaf Europeans.

As the initial period of lockdown starts to end in different countries, what are the challenges with the next step of a phased reopening of certain sectors of society?

We see several challenges in the next few months and they will all depend on how governments impose lockdowns.

The main one is to ensure full involvement of persons with disabilities. Depending on actions taken by governments, there will be practical challenges we will not be able to foresee and only full involvement will help.

For example, we heard that in Leuven, a city in Belgium, the city is enacting “one way streets for pedestrian” to reduce people passing each other. This is done without accessible signalling and will become a nightmare for blind and partially sighted persons. As shops open with physical distancing restrictions we are also afraid of what will mean for persons with disabilities that are not able to safely practice them.

There are other more systemic challenges:

We need to be vigilant and ensure that this period will not create even more segregation of persons with disabilities: governments cannot keep them isolated for longer than the average population.

We also need to advocate for more funding both for organisations of persons with disabilities and support services. COVID-19 and the ensuing economic crisis are a big risk and many organisations and services are at risk of closing.

We need to do a stronger push to end residential institutions and other settings where persons with disabilities are deprived of their liberty. They are essentially death traps during COVID-19. Keeping them open is inhumane.

We need to continue to fight for accessibility of information: the next few months will be full of uncertainty and as we already saw in some countries exit plans are not set in stone and can be rolled back. Persons with disabilities need to have access to this information.

We need to pay special attention to education and employment settings. As students and workers go back to physical spaces, we need to ensure persons with disabilities are not left behind.

Finally, we need to pay very close attention and really advocate for support in the incoming economic crisis. Persons with disabilities already disproportionately live in poverty – the next crisis can cause a real humanitarian crisis for persons with disabilities in Europe.

The upcoming crisis is also worrying in terms of funding for organisations of persons with disabilities and civil society in general. We hope governments won’t cut funding, but this seems to be a likely course of action for some.

Finally, a big challenge is the move of governments to limit human rights, freedom of movement and the right to privacy. Governments are likely to take disproportionate measure that infringe on our rights and limit our freedom and also our work.

a) Uncertainties and fear of another spike. b) Lack of proper and efficient strategies to monitor and sustain the health officials’ recommendations such as social distancing and wearing PPEs while businesses reopen. c) The risk of increased cases of infections and deaths d) Lack of sufficient data e) the unprecedented transition to a "new normal".

We know from our members that the compulsory wear of masks can create challenges for the deaf persons, as it prevents lipreading and hides some of the essential elements of sign languages – face expressions.

What lessons can be learned from the way that this situation was dealt with both within and outside your organisation as we move forward?

It is clear that we are still not systematically included. It is clear that our not being included caused needless deaths, pain and suffering for persons with disabilities.

This situation highlighted the still wide exclusion of persons with disabilities and how it impacts us. Governments need to systematically consult us.

We especially need to be involved in the upcoming months to ensure persons with disabilities and their organisations have their rights upheld and have the necessary resources to do so.

Well-coordinated, rapid inclusive response and efficient Disaster Risk Reduction (DRR) strategies must be in place across the board, at all times. Accessible, inclusive information, resources and DRRs services are critical.

The most valuable lesson for the governments would be that the accessibility of information through national sign languages for deaf persons is the key. It does not only mean that only emergency information must be accessible. This applies to all mainstream information.

Are there tools, methods, networks etc. which could be set up to ensure that any future crises are dealt with in the best possible way?

The full implementation of the UN Convention on the Rights of Persons with Disabilities is essential. That includes, of course, putting persons with disabilities and their organisations at the centre of the response. Committees, taskforce, bodies, need to include us. Funding needs to be given to organisations of persons with disabilities so they can have the necessary resources to be an active part of these bodies.

Separate disability-specific networks dealing with disaster risk reduction already exist. We need to empower them, but most of all we need to ensure they are connected with mainstream groups.

a) Effective DRRs systems and mechanisms to monitor and tackle such pandemics must be implemented. b) Governments must ensure inclusive response to all sorts of crises c) Organizations should develop and implement disaster preparedness policies and strategies d) Special inter-governmental, inter-organizational networks and frameworks must be put in place to address future crises e) continued and inclusive public awareness and information strategies

A constant and meaningful involvement of organisations representing all kinds of disabilities in the decision-making processes is the key!

Any other comments ideas you wish to share with us?

a) Authentic sources of information are critical in times of crises, b) Accessible and inclusive strategies and interventions must be considered at all times c) proper data collection

Educational institutions started online distance teaching as the government closed on-site teaching in all schools, colleges and universities. The transition to online education was a central order issued by the ministry. The central regional educational offices set the main guidelines, and the schools developed their own.

  1. This transition (including teaching/learning and also the examinations) was smooth in the universities and colleges teaching vision rehabilitation based on their good infrastructure.
  2. The schools for blind and low vision children started also online teaching using different methods based on the different possibilities of the children at home: PC, messenger, Viber, Skype, by phone and by post (sending teaching materials). In some small villages the pupils need to go to the local library or mayor’s office if this is the only place where an internet connection is available. More difficult is teaching children with multiple disabilities as the possibilities of online communication with them is very limited. In these cases, the school is trying to support the families.

Some schools rented laptops, optical/ electronical equipment to children where the family asked this. Beside digital online teaching, a school developed a blog offering suggestions for parents on how to help their children at home, and also a library blog.

The vision rehabilitation centres continued vision rehabilitation which had already started for those who are actually residents in the centre. However, rehabilitation of others (at their home or visiting daily a centre) has to be suspended due to safety reasons of the residents and the staff. Some distance online training is still possible e.g. via IT. Some centres phone their clients who are at home.

The national and regional organisations of blind and low vison people organized home office work for the majority of their service staff, but some of them still work in their usual workplace, so the services are unchanged.

They are continuously looking for the changes in legal regulations and working accordingly. They are in direct contact with the ministry and the governmental cabinet. They inform their members by newsletter and on their facebook site.

One NGO adapted to the new COVID situation as follows: They had to stop the vision screening program and started new actions: They provided donations (face masks, medical equipment, food packages, laptops) for hospitals and families in need. They also promoted and organized blood donation.

See our webpage for information on different situations on the national levels

Our questions to MEP Katrin Langensiepen

1. Generally speaking, regardless of disabled persons’ concerns, criticism was often heard at national level that the EU failed to be present with a common response against the COVID-19 pandemic crisis. Do you think this criticism is fair?

It is definitely true that the COVID-19 pandemic showed that the EU was completely unprepared and not yet resilient to this sort of crisis. The first reaction of the Member States was to fall back into national crisis management. National boarders were closed one by one and we missed EU-coordination regarding the economic and social shutdowns.

Very unfortunately solidarity between the Member States was particularly lacking in the initial phase when Italy saw its health system overwhelmed.

Nevertheless the EU regained control in the crisis management. The Commission proposed big financial packages in order to minimise the socio-economic fallouts in the Member States and invest in research on vaccination. EU-Funds like the Fund for European Aid to the Most Deprived (FEAD) were transformed in order to provide more for flexible and un-bureaucratic help on the ground. And some Member States like Poland, Romania and Germany also showed solidarity by exchanging medical equipment and transferring patients from Italy and France to their hospitals.

What the EU has to do now is to learn from this crisis and prepare for the next. As Greens/EFA we developed a recovery and resilience plan, an investment and reform package focusing on a robust, sustainable and fair response to the crisis. Concerning future pandemics we need stronger cooperation, better exchange of data on stocks of medicines, availability of intensive care beds and medical devices, more investments in the EU-productions of medical equipment as well as an EU disaster response plan.

 2. Specifically regarding the needs of persons with disabilities, what do you think of the way the EU and its Member States have handled the crisis so far? What are the main defaults observed, that you are aware of in your capacity as member of the Disability Intergroup?

Persons with disabilities were disproportionally affected by the pandemic. But they were also disproportionally left alone in that crisis. Reports on human rights violations faced by people with disabilities are very worrying. Institutions were left alone without sufficient medical material and help, essential services for persons with disabilities were cut and in some Member States the very right to life was questioned in hospitals when triage rules were set.

For me, the biggest mistake of the Member States was not to include persons with disabilities in the crisis management. If they had done so, things would have taken place differently. As the only female MEP with a visible disability, I know how underrepresented persons with disabilities are in politics and this is definitely a problem.

 Since the lockdown I am working from home in Germany and together with other activists I am very actively fighting for the protection of risk groups, which include persons with pre-existing illnesses and also persons with disabilities. During the webinars I organized, a lot of people with disabilities expressed their concern of being isolated and stigmatized as risk groups. Also, now after the lockdown, risk groups fear being excluded from work and social life. This is why we need specific action plans on how to help them after the lockdown.

Triage is also a topic that people with disabilities were very worried about. In Germany the situation in the hospitals is very good. Nevertheless, professional societies for emergency medicine published their triage recommendations which indirectly discriminate against people with disabilities by counting factors like frailty in their assessment. This is unacceptable and something Member States and the EU shouldn’t close their eyes to.

 3. What lessons can be learned for the future, more or less immediate? And what do you expect from the EU and in particular from the European Parliament?

 What the Parliament and other EU-Institutions need to work on are two things:

Firstly, we need to unveil and pursue all violations that occurred during Covid-19. For example by asking the Commission for a special report on UNCRPD violations during the pandemic.

Secondly, we need to continue our work on the implementation of the UNCRPD.

The pandemic only emphasized the different areas of ongoing discrimination of persons with disabilities: institutionalisation, a lack of accessibility in hospitals, of information services and transports, underfunded care services… All these problems existed before the pandemic and had dreadful consequences in the last month. More than ever we have to fight for the implementation of our rights. For that the Commissions needs to come up with a strong EU Post-2020 Disability Strategy that also covers the experience of the pandemic. The EU needs an EU disaster response plan which automatically includes a crisis adviser team with representatives of persons with disabilities.

We also need to push the Commission to finally bring forward a new anti-discrimination legislation.