The European Disability Forum (EDF) is an umbrella organisations of persons with disabilities NGO that defends the interests of over 100 million persons with disabilities in Europe. We bring together representative organisations of persons with disabilities from across Europe.
Currently, we are working with 102 member organisations from more than 36 countries in Europe. These organizations are divided into four categories:
Full members: National Councils of Persons with Disabilities and European Organisations representing persons with disabilities.
Ordinary members: Organisations for persons with disabilities that are consistent with our aims and objectives.
Observer Members: National organisations of persons with disabilities from countries outside the European Union.
Associate Members: Non-profit organisations or companies that are committed to promoting our aims.
Our office is located in Avenue des Arts 7-8, B-1210 Brussels (Belgium).
You can email us firstname.lastname@example.org or if you prefer you can call us +32 2 329 00 59
We look forward to hearing from you!
Many authorities created apps to support in tracking the infection, with self-diagnosing and with practical tips. Unfortunately, we don’t know any accessible Apps.
Chatbot that indicates what people with symptoms should do – call a doctor, stay at home or other options. It is not fully accessible but can be used by a screen reader user.
We are very concerned by the situation of persons with disabilities living in institutions. The estimated 1 million persons with disabilities that live segregated in residential institutions are now more vulnerable than ever as they face increased risk of infection by COVID-19, physical and psychological abuse due to isolation, neglect, and abandonment.
Reports show this is already happening in several countries
Lack of personal protective equipment for persons with disabilities and staff of institutions leads to higher risk of infection- for both staff and residents. The risk is compounded due to the communal life typical of institutions;
Lack of care and residents left unattended due to staff shortage – staff cannot work as they are infected or under quarantine, or do not work because of fear of becoming infected;
Forced medication and forced restraint measures under the pretence of preventive measures;
Forced confinement leading to lack of contact with outside world – family, friends and others.
Residential institutions and psychiatric wards in hospitals are considered vital functions to be maintained. The service has been adapted to less physical contact and increased focus on hygiene. Clear guidelines have been adopted (after a period of uncertainty) stating that persons with disabilites in institutions can visit/be visit as long as they comply with current guidelines of social isolation (2 metres apart and maximum gathering of 10 people).
In Alsace, the manager of the residential institution “association Marie-Pire” shared with Le Monde discrimination in medical treatment:
A doctor refused to go to the institution to certify a death
On 25 March, the staff called emergency medical services 5 times for 5 different residents. The response they got was to stop calling as the services were over capacity. The medical services didn’t send an ambulance.
The day after the manager had a meeting with the regional health authority. He was told that persons with disabilities would not be received by hospitals. They said they would support the institution with end-of-life care and psychological support for staff.
Psychiatric units are locking persons in their rooms and depriving them of access to mobile phones and the internet. Contact with family or friends is often prohibited or needs to be done through a single phone, which increases the chance of transmission of COVID-19. Psychiatric units are dealing with staff shortages due to many workers not showing up through fear of being contaminated.
Residential institutions face a serious lack of personal protective equipment and of funding to support their preventive measures.
We released a statement calling on authorities to act fast on this.
The United Nations Subcommittee on Prevention of Torture has issued a statement.
70 people became infected in an institution for persons with intellectual disabilities. Managers admitted that residents and staff lacked personal protective equipment;
52 residents (out of 67) and 8 staff (out of 14) became infected in a residential institution in Poland;
242 residents and 59 staff became infected in the psychiatric institution Sasca Mică
68 (out of 154) residents and 35 (out of 103) staff are infected with COVID-19 in another psychiatric institution in Costana. Staff was hospitalized but residents were not.
The press reported several of these cases, including 43 deaths in a retirement home and at least 12 suspected cases in an institution in Granada. There are also reports of support services that are in dire need of masks, gloves and gowns – they are resorting to homemade solutions and are even microwaving equipment in the hope of sterilising them.
Make funding and practical solutions available to ensure that persons with disabilities are not negatively affected by the temporary loss of people from their support networks such as personal assistants, family, and specific professional services through illness or indirect impact of COVID-19.
Designate providers of support services such as care, support workers and personal assistants as ‘key workers’ who should continue to work and be provided with the Personal Protective Equipment (PPE) and instructions on minimising exposure and spread of infection, and be proactively tested for the virus. Workers should be allowed to travel to and from the workplace within organisations or clients’ homes.
Support agencies providing disability support to develop continuity plans for situations in which the number of available caregivers may be reduced. This includes reducing bureaucratic recruitment barriers while maintaining protection measures such as background checks for caregivers.
Some educational systems that remain open for children of key workers (healthcare workers, food shop workers, etc) accept children of parents with disabilities and children with disabilities.
Pupils with disabilities should learn at home (with the help of their parents) according to the assignment made electronicaly by their teachers – like any other pupils.The government has adopted measures for the parents of students with disabilities to stay at home with them to help with their education: this is valid for students under 26 years old.
Law of March 2020 makes it possible to remove, prioritize or reorganize social services temporarily if needed. However, this does not apply to functions such as residential institutions . There are reports of some municipalities or suppliers that have made general decisions, for example, to close relief programs or discharge children living in a residential institution who have been visiting their family at home. Children with disabilitiess still have the possibility of attending a day care center or school if it benefits the child. The municipalities are obliged to offer emergency care for children with disabilities below the age of 9 years old.
Special education units follow distance learning guidance given to all schools. Teachers and education assistants, including for specialized units, continue to work and should provide accessible formats. An exception is made for children with disabilities of healthcare workers: they continued attending school. If persons with disabilities attend day centers, they should remain at home unless their caregivers cannot support them (due to work, or other reasons) – in this case day centers should find a specific solution. If the student with disabilities live in a residential institution, they will stay in the institution and cannot leave (or be visited) until the end of confinement.
All schools and educational centres are closed. A long-distance educational program was designed for all students, both with and without disabilities. We received reports that doubt that this program will be well implemented by special schools and educational centres for children with disabilities, since they requirs additional educational tools and electronic methods, which, in turn, require more time in order to be able to respond effectively to the unique needs of each student.
There is extended leave for parents of children until 12. The age limit is waived in case of children with severe disabilities. The leave is recognised alternately to both parents, for a total of fifteen days per month, and is subject to the condition that there is no other parent in the household who is receiving income support due to a suspension or termination of employment or other unemployed or non-worker parent. No other special measures have been taken.
Leave granted to parents that care for persons with disabilities older than 18 years if these persons were in educational programs in vocational schools and/or day centres.
Parents of children with disabilities received paid leave and continue receiving the subsidy for assistance (a measure that existed before the pandemic.)
Schools and services are not required to close, but shortage of staff is causing problems. Organisations of persons with disabilities are extremely worried with recent demands from local authorities, who requested the central government the ability to prioritise services – there are concerns that this will lead to cuts in the provision of community-based services.
Customized training is still the teachers responsibility. The national “special education” support system isusually helping schools/pupils in individual cases and with guidance on how to help pupils with learning disabilities such as dyslexia, dyscalculia, developmental language disorders (and others). They have now redeployed resources to staff and enhanced an online chat-service available to both parents directly and teachers.
The lockdown of the schools excluded educational support for children with disabilities in their first phase of the response (both special schools and extra support). This has been reversed as the country was especially hit by the pandemic and everything closed.
The Alliance of Inclusive Education provides a complete summary and reaction to the UK’s government decision.
Actions of organisations of persons with disabilities and support services
Federation Nationale “Grandir Ensemble” started a platform to support families with children with disabilities.
UNAPEI (the French association of persons with intellectual disabilities) implemented several actions to support students with disabilities and their families: phone helpline, support at home, delivery of educational materials at home and support with education, close follow-up of young children with autism and children with disabilities and behavioural issues, in case of need for respite and in agreement with the Regional Agency for Health, a very partial reopening of an establishment may be considered.
The regional center for autism in the South of France provides support for children and youth with autism through phone calls, special video programmes and daily counseling. The organisation “Association la Bourguette” provides a 24h phone line for support to the families of their students. This support is given by psychologists and teachers from the organisation.
An association in Milan created an emergency protocol to continue support.
3. An age limit for admission to the ICU may ultimately need to be set. The underlying principle would be to save limited resources which may become extremely scarce for those who have a much greater probability of survival and life expectancy, in order to maximize the benefits for the largest number of people. In the worst-case scenario of complete saturation of ICU resources, keeping a “first come, first served” criterion would ultimately result in withholding ICU care by limiting ICU admission for any subsequently presenting patient.
4. Together with age, the comorbidities and functional status of any critically ill patient presenting in these exceptional circumstances should carefully be evaluated. A longer and, hence, more “resource consuming” clinical course may be anticipated in frail elderly patients with severe comorbidities, as compared to a relatively shorter, and potentially more benign course in healthy young subjects. In Italy, general criteria for ICU admission were explicitly addressed in a 2003 publication  and in a multidisciplinary consensus document released in 2013 for advanced care planning in patients with endstage diseases
“The guidance from the National Institute for Health and Care Excellence (NICE) says that all adult COVID-19 patients should be assessed for “frailty” when admitted to hospital, and that “comorbidities and underlying health conditions” should be taken into account”.
While this was later updated to exclude certain types of disability (including Cerebral Palsy), it still does not go far enough: It is the use of the CFS “frailty” scoring system that causes most alarm, with the guideline suggesting that those with a score as low as five – those seen as “mildly frail”, who often need help with transportation, heavy housework and medication (nine represents someone who is terminally ill) – might not be considered appropriate for critical care and might be steered towards end-of-life care instead if their condition deteriorated.
The clarification provided by NICE didn’t go far enough as it still means that certain persons with disabilities (such as learning disabilities) are still in danger of not receiving care:
Maureen Piggot, a member of EDF’s executive committee, said: “I welcome the clarification of the NICE guidelines, but it does not go far enough. The UK needs to follow the UN Convention on the Rights of Disabilities and explicitly ensure that there is no discrimination against persons with disabilities – this includes healthcare guidelines that provide equal access to life-saving support.”
International guidance regarding non-discrimination in prioritisation of patients with COVID-19 (especially in cases of lack of ventilators and bed):
Our open letter to the World Health Organisation.
Our recommendations on ethical medical guidelines.
UN experts: “Everyone has the right to life saving interventions”
UN Convention on the Rights of Persons with Disabilities (UN CRPD) especially Article 11 – situations of risk and humanitarian emergency
“States Parties shall take, in accordance with their obligations under international law, including international humanitarian law and international human rights law, all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies and the occurrence of natural disasters”
World Medical Association Statement on Medical Ethics in the event of disasters
“In selecting the patients who may be saved, the physician should consider only their medical status and predicted response to the treatment, and should exclude any other consideration based on non-medical criteria.”
Humanitarian charter of The Sphere
“Any such (humanitarian) assistance must be provided according to the principle of impartiality, which requires that it be provided solely on the basis of need and in proportion to need. This reflects the wider principle of non-discrimination: that no one should be discriminated against on any grounds of status, including age, gender, race, colour, ethnicity, sexual orientation, language, religion, disability, health status, political or other opinion, and national or social origin.”
The Spanish bioethics committee produced guidance specifically for COVID-19 stating that disability cannot be a factor in ethical medical guidelines.
The Bioethics Committee of the San Marino Republic produced guidance specifically for COVID-19
“The attribution of priority of treatments to be deliver as well as the victims to be treated cannot fail to take into account the fundamental ethical principles, which materialize in a correct application of triage, trying to optimize the allocation of resources. The only parameter of choice, therefore, is the correct application of triage, respecting every human life, based on the criteria of clinical appropriateness and proportionality of the treatments. Any other selection criteria, such as age, gender, social or ethnic affiliation, disability, is ethically unacceptable, as it would implement a ranking of lives only apparently more or less worthy of being lived, constituting a unacceptable violation of human rights.”
Statements on government measures
Complaint by the Spanish National Disability Council
Statement by Italian disability organisations
Statement by the Belgian National Superior Disability Council
The Council of Europe’s Commissioner for Human Rights states: “It is the foremost duty of all member states to ensure that this does not occur and to reassure people with disabilities that they will not risk discrimination on the basis of disability in accessing health care and that their needs will still be addressed adequately.”
The most current and accurate estimate points at over 100 million persons with disabilities living in the European Union, which includes 99 million persons according to the EU-SILC survey of 2016 and 1 million persons estimated to be segregated in residential institutions and therefore not represented in the survey.
An open consultation is the way asks for the views of citizens and other interested organisations, companies, or networks. They usually concern new EU rules and initiatives but they can also be about existing ones. They can be on any topic from aviation safety to deep-sea fishing or chemical substances. Currently there are 1179 open consultations on-going!
Consultations are part of the law-making procedure and are obligatory to conduct, even though the EU institutions are not forced to act upon the views expressed in the consultations. They are, after all, the opinions of outsiders.However, it is an important tool to express our views “officially” and to be “on the record”. The sheer number of replies on a certain initiative can for example indicate if there is a strong interest or if the initiative is considered less important.
All consultations can be found online but replies can also be given offline in writing to the responsible service. Often, a meeting in person with the key parties that are interested is also organised in Brussels. For important consultations such as the one on the European Disability Strategy, EDF will of course also prepare a reply. For most of the 1178 other consultations we are less concerned even though all are important topics that concern us also as citizens.
So, here are the main points about EU Consultations summarized:
they are an obligatory part of the EU decision-making procedure
they are important because they can influence how tomorrow’s laws and initiative will look like
Besides technical expertise, it is also important to show that many parties are interested
they are not only for organisations, individual citizens can also reply!
Since 2012, the European Union has set up a mechanism to monitor the implementation of the Convention, called the EU monitoring Framework. EDF is a full member, together with the European Ombudsman, the European Agency of Fundamental Rights (FRA) and the European Parliament. The European Commission withdrew itself from the Framework after the publication of the Concluding Observations of the CRPD Committee to the EU.
During the meetings of the Framework since 2013, the role and the functioning of the Chair and the Secretariat were decided and its working methods were adopted.
From May 2013 to October 2015, EDF Chaired the EU Framework and the European Commission performed the role of secretariat.
From October 2015 to September 2017: The role of Chairperson and secretariat of the EU framework was taken over by the FRA at the end of 2015 until September 2017.
From September 2017 to October 2018: EDF chaired the EU Framework, with the FRA as Secretariat.
Since October 2018: the EU Ombudsman took over the chair role, and the European Fundamental Rights Agency remains the secretariat.
The EU Framework complements national monitoring mechanisms in EU Member States and works to enhance synergies with them. Since 2013, the EU Framework organises a yearly meeting with the national monitoring frameworks with the aim to enhance complementarity and synergies in their respective work. The last meeting with the national frameworks took place in May 2018 and focused on political participation.
In 2015, the EU Framework focused on its participation in the EU review process. The Framework presented its functioning and works to the CRPD Committee on 2 April 2015 and contributed to the constructive dialogue on 27 and 28 August 2015 with an opening and closing statement. The Framework members separately met with the Committee before the start of the Constructive Dialogue to give their views on the EU implementation of the CRPD.
More information on the operational provisions, the work programme and the meetings’ agenda and minutes can be found on the [Framework’s webpage.](https://fra.europa.eu/en/theme/people-disabilities/eu-crpd-framework)
Organisations that can become members of the European Disability Forum are:
National Councils of Persons with Disabilities in European countries
European Organisations representing persons with disabilities.
Organisations for persons with disabilities, that are consistent with our aims and objectives.
Non-profit organisations or companies that are committed to promoting our aims
The European Disability Forum is not able to provide assistance nor funding.
For assistance within the EU contact our national members for information on associations near you that may help
In 2016, EDF launched a series of European Human Rights Reports which will be published on a yearly basis. Each of the annual issues will be dedicated to a different theme of great importance for people with disabilities in Europe.
Our first issue was published in December 2016 to mark the 10 years of the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD). The report gives an overview of the state of play on the CRPD in Europe.
A second issue is being prepared focusing on the implementation by the EU of the Agenda 2030 and its Sustainable Developments Goals, and EU’s international cooperation policy. This 2017 report will be finalised soon.
The European Human Rights Report in accessible PDF format
The Easy To Read version of the report
Organisations of persons with disabilities (DPOs) have also the opportunity to participate in the reporting process. At the same time that state parties’ prepare their report to the UN Committee, DPOs can also prepare an alternative report presenting the situation of persons with disabilities and covering gaps of the state parties’ report.
EDF Alternative Report comes to give the view of 80 million Europeans with disabilities on the enjoyment of their political, civil, economic, social and cultural rights. The report is the result of a collective work with EDF’s members, civil society organisations and other stakeholders. Giving a clear view on the situation of persons with disabilities all over Europe would not have been possible without their contribution and expertise. The purpose of EDF’s Alternative Report is to inform the UN Committee about how the UN CRPD has been implemented by the European Union and its institutions, agencies and bodies. The report based its analysis on the gaps in the EU Report on the Implementation of the UN CRPD that the EU submitted to the UN Committee on 5 June 2014 and seeks to complement it where relevant with information received by EDF members and other stakeholders.
EDF AND MEMBERS’ INVOLVEMENT IN THE EU REVIEW
The EU review process in Geneva was a core part of EDFs advocacy work, together with all of our members, throughout 2015. It involved a range of partners, a high level of coordination within EDF, and a range of publications and events.
In addition to the EDF report, the Committee received a range of civil society alternative reports, including from EDF members, who have expertise and mandates to work on specific topics. In order to make the EU review smoother, for the committee to understand main issues and priorities EDF coordinated closely with all our members’ organisations which presented alternative reports.
EDF has also prepared a submission for the List of Issues which was adopted by the EDF Executive Committee. This was sent along with EDF alternative report to the CRPD Committee.
The Committee issued its list of issues to the EU and EDF, then analyzed this, consulted with our members, including during our May General Assembly, developed an EDF response to the List of Issues. This was submitted to the CRPD committee, and also presented in a second briefing for the committee which took place on August 27th in Geneva.
The Constructive dialogue between UN Committee and the EU took place on August 27th and 28th to which EDF also took part together with members. EDF also took this opportunity to meet with the Commission services, led by Mr. Michel Servoz, to directly discuss all of EDFs concerns, which were presented to the Committee during the briefing.
EDF secretariat organized a series of coordination meeting with its European members to discuss the ways we will work together to promote the recommendations of our alternative report during the reporting / review process. All of the Committee briefings were done jointly with our members who also submitted alternative reports, in collaboration with the International Disability Alliance.
Countries that have ratified the CRPD have to submit an initial report on the implementation of the CRPD in their country to the UN Committee two years after the entry into force of the Convention. During a first session of the UN Committee, it will have a first internal discussion on the state report and it will prepare a list of questions to send to the state party for issues that require further clarification.
This list is called “list of issues”. After that, the state party will have to respond to this list of issues. In next session of the UN Committee, it will meet the state party and will thoroughly discuss the report and the answers on the list of issues. This is called “constructive dialogue”. As a result, the UN Committee will give its view on how efficiently the state party has implemented the Convention and will make recommendations for improvement. These are called “concluding observations”.
The EU has prepared and submitted its initial report to the UN Committee in June 2014. In 2015, the UN Committee will review the report and the work the EU has done for its citizens with disabilities.
In April 2015, the UN Committee will have a first internal discussion on the EU report and they will prepare a list of questions to send to the EU for issues that require further clarification. This list is called “list of issues”. After that, the EU will have to respond to this list of issues. In August 2015, the UN Committee will meet the EU and will thoroughly discuss the report and the answers on the list of issues. This is called “constructive dialogue”. As a result, the UN Committee will give its view on how efficiently the EU has implemented the Convention and will make recommendations for improvement. These are called “concluding observations”.
The next report of the EU to the UN CRPD Committee is expected in January 2021. However, the Committee requested the EU to submit within 12 months of the adoption of the CO information in writing on three urgent matters. The EU has to explain what measures it has taken to implement the Committee’s recommendations set out in paragraphs 17, 29 and 77, regarding the declaration of competence, the European Accessibility Act and the monitoring mechanism.
At the international level, the respect of the Convention rights is monitored by the UN Committee on the Rights of Persons with Disabilities. It is a body of eighteen independent experts who have been nominated by the countries that have ratified the Convention. The Committee members are elected for the period of either two or four years and serve on the Committee in their individual capacity.
The principal task of the UN CRPD Committee is the review of the progress in implementation of the Convention. States Parties are obliged to submit to the Committee an initial report on measures taken to implement the Convention two years after the entry into force of the Convention. Thereafter, periodic reports must be submitted every four years. On the basis of the State reports, complemented with information from other sources, including the organizations of disabled people, the Committee assesses the country’s progress and issues concluding observations to the State Party.
As of November 2017, 23 European countries have been reviewed by the CRPD Committee – Spain, Hungary, Austria, Sweden, Denmark, Germany, Belgium, Croatia, Serbia, Czech Republic, Lithuania, Portugal, Slovakia, Italy, Cyprus, Montenegro, Latvia, Luxembourg, UK, Russian Federation, Bulgaria, Slovenia and Bosnia Herzegovina (the latter four’s review will finish in 2018). The European Union was reviewed in 2015. In 2018, Malta, Poland and FYROM will be reviewed. Spain and Hungary will have their constructive dialogue for the second time in August 2018. The remaining European countries pending for review by the UN CRPD Committee are, in the order submission of their reports are Estonia, Greece, Norway, Turkey, Switzerland and France.
The reports of States Parties and the alternative reports of the civil society organisations, along with the schedule of their review by the CRPD Committee are available on the website of the Office of the UN High Commissioner for Human Rights.