What is EDF-FEPH? - European Disability Forum

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.

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.

Denmark
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).

France
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.

Greece
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.

Germany
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.

Italy
70 people became infected in an institution for persons with intellectual disabilities. Managers admitted that residents and staff lacked personal protective equipment;

Poland
52 residents (out of 67) and 8 staff (out of 14) became infected in a residential institution in Poland;

Romania
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.

Spain
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.

Our recommendations

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.

Government measures

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.

Czechia
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.

Denmark
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.

France
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.

Greece
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.

Italy
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.

Lithuania
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.

Portugal
Parents of children with disabilities received paid leave and continue receiving the subsidy for assistance (a measure that existed before the pandemic.)

Sweden
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.

Norway
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.

Spain
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.

United Kingdom
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

France
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.

Italy
An association in Milan created an emergency protocol to continue support.

Spain

The ethical guidelines of the Spanish Society of Intensive Care Professionals (Spanish), has an example of what worries:

Page 12, specific recommendations:

“4. Cualquier paciente con deterioro cognitivo, por demencia u otras enfermedades degenerativas, no serían subsidiarios de ventilación mecánica invasiva”

“4. Any patient with cognitive decline, due to dementia and other degenerative disease, will not receive mechanical assisted invasive ventilation.” (roughly translated)

We are very concerned that this excludes a significant population with intellectual disabilities, who have the same chance of survival and the equal right to access healthcare.

Italy

The guidelines of the professionals of anesthesia, resuscitation and intensive therapy (English) are discriminatory:

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 [1] and in a multidisciplinary consensus document released in 2013 for advanced care planning in patients with endstage diseases

United Kingdom

“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.”

While the proposal is still being negotiated, we expect local transport services to be included in it. It doesn’t mean universal access free of charge, as not all countries provide this to persons with disabilities. If free public transport and free parking are advantages that nationals with disabilities receive, this should be the same for Disability Card holders visiting that country.

At the moment, the Card is not being issued.

Furthermore, the proposal only extends to EU nationals or residents who have a disability recognised in a country belonging to the European Union. This means that when the Card is issued, it will only be for persons that are recognised by an EU country has having a disability.

Unfortunately, if you are visiting from outside the EU and are not a citizen of an EU country, you will not be able to get the Card.

If your disability is not recognised by the EU country you are a citizen of, you will also not be able to get the card.

If you are a resident in a European Union country and your disability is recognised there, you will be able to get the Card.

The proposal is still under discussion by the European Institutions, which means the final version of the European Disability Card is still not available. Some countries are still continuing their pilot versions of the European Disability Card, but they cannot be used in all European Union countries, and they have a limited range of benefits.

Read more about the pilot projects:

All delegates will be seated in the Hemicycle. The Visitors Programme will provide a short introduction about the European Parliament, after which the 5^th European Parliament will start. It will include interventions from high-level representative such as the President of the European Parliament, European Commissioners, and representatives from national governments, international organisations and civil society. For each of the three panel discussions, there will be a plenary debate when delegates will be able to intervene from the floor. Additionally, the delegates will adopt a Manifesto for the 2024 European elections. Consult the Draft Agenda for more details.

The European Parliament is accessible to persons in wheelchairs and with reduced mobility. We will provide interpretation in all 24 EU official languages, as well as International sign Interpretation. Human live captioning in English and automated translation of the captioning will be available in all EU languages. An easy read format of the programme and of the manifesto to be voted will be available. Other measures can be available upon request.

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 seventh issue is being prepared, focusing on the employment issues faced by persons with disabilities. We aim to publish the report towards the end of 2022.

Read our previous reports:

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.

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.

A good example is the current consultation on the evaluation of the European Disability Strategy. It is important to reply to tell the EU what we think was good and what was bad with the Strategy so we can ask for a better one.

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!

Why don’t you try it and answer the consultation on the Disability Strategy today?

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)

More information

The operational provisions on the EU Framework’s:

[chairperson]

Individuals cannot become members of the European Disability Forum.

You can join one of our members organisations or follow us on Facebook, Twitter and our newsletter.

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

Most of the children in Ukraine’s residential institutions are not orphans. Whilst they may be placed temporarily outside Ukraine, it is not appropriate for them to be adopted, as they should be guaranteed the opportunity to be safely reunited with their families whenever possible. A focus on adoption might lead children to be forever separated from their families and to be victim of unscrupulous actors making money from the inappropriate international adoption of children.

What many children evacuated from institutions in Ukraine need is temporary care which might implement services for the safeguard of children to address gender-based violence, family tracking and reunion mechanisms.

It is also essential to promote foster family care in receiving countries, for example by planning to place children in family environments with priority for Ukrainian or mixed foster family. Because most of the children from Ukrainian institutions have disabilities, it is important that child protection systems recruit and support foster families who can address all the children’s needs and rights.

If you are interested in fostering Ukrainian refugee children, you should contact your country’s child protection department or your local authority to apply. In some countries, foster care associations may also have relevant information.

The OCHA is coordinating the humanitarian response in Ukraine. The Office is divided into different Clusters which deal with different sectors. As organization, you can get in touch with the respective Cluster and figure out what are the best ways to provide support. Please, find here all 2022 Clusters contact information. DPOs can contact the Protection Cluster as it has a specific Age and Disability Working Group (ADTWG).

It is also possible to receive OCHA Situation Reports and to receive invitation to the General Coordination meetings by signing up to the 2022 contact list.

According to last data, the majority of children in Ukrainian institutions have a disability. However, most of them are not orphans: many children are in institutions because they couldn’t access support services in the community – such as education, healthcare and social protection.

The government and civil society have been working to evacuate as many of these children as possible. Nevertheless, an estimated 10,000 children are not in a position to be safely returned to their own families or placed in foster families.

EDF is working to influence the efforts of the EU, governments and the UN agencies. Our priority is to ensure that all children are accounted for and that the child protection and education systems of receiving countries can provide adequate care, support and inclusion for children with disabilities.

In case of children having high support needs, families have not been able to evacuate with their children and some are not even able to reach the relative safety of bomb-shelters because the situation is dangerous. Local civil society are trying to prioritise the provision of supplies and support to these families, but they are at greater risk of harm than other families.

EDF is currently working to find out as much as possible about adults with disabilities in institutions in Ukraine. In situations of war, children and adults with disabilities often get left behind in institutions. The Ukrainian government is attempting to put in place a plan to prioritise the evacuation of people with the highest support needs. However, resources on the ground are already overstretched. Some personnel working in institutions have resigned so they can evacuate with their own families. This means fewer staff in the institutions, reducing the quality of care and support. As with most Ukrainians, access to food and other essential supplies is interrupted. Local authorities and NGOs are attempting to fill the gaps.

The EU has approved a Temporary Protection Directive, an EU law that grants temporary protection and residence to people fleeing the war from 24th February 2022 on.

The EU and its Member States will provide humanitarian support in and outside of Ukraine, including €120 million in budget support to Ukraine, €1.2 billion euro in emergency loans and €85 million in humanitarian aid.

For more information, consult the website of DG HOME and DG ECHO.

We stay in constant direct contact with EDF member organisations in countries neighbouring Ukraine that are coordinating assistance and providing support.
We are working with donors and EDF members on funding support.
We have regular meetings and exchanges with European organisations and UN agencies at the European level to ensure that their humanitarian work and funding are inclusive of persons with disabilities
We collect and disseminate the most updated information on the immediate needs of persons with disabilities in Ukraine and outside its borders.

EDF members in Ukraine, Latvia, Slovakia, Hungary, Romania and Poland have already started this work, or are making plans to do so. Activities for the short to medium term include:

Identify immediate and urgent needs
Support local organisations to set up accessible transit shelters in Lviv and Uzhhorod
Provide accessible information for receiving organisations/ persons with disabilities and their families (website, helpline, information leaflets)
Deliver hygiene products, medicines and food
Ensure the purchase of the necessary aids, including wheelchairs, crutches, walkers, pressure- relieving mattresses, etc.
Provide accessible vehicles to transport refugees with disabilities
Advocate to governments to welcome adults and children with disabilities arriving from Ukraine and provide them with the right support.
Help link people with disabilities with accessible places to stay, with food, medical support and technical equipment they may need
Advocate for disability inclusion in the wider humanitarian response
Work with the media to ensure the situation of persons with disabilities is adequately represented

EDF is also exploring collaboration with members in other countries, and the overall strategy is designed so that this early response will lead into recovery work that builds members’ capacity also longer-term recovery activities in the longer term. For more information, contact EDF’s international cooperation team: ukraine@edf-feph.org

If you need legal assistance, please check the following websites:

Ukrainian Legal Aid; Online Legal Service; United for Ukraine.

If you and your family need urgent help in Ukraine related to accessible transportation, shelter, assistive devices, legal services and more, contact:

In Lviv, Ukraine: “Dzherelo Centre”. If possible, contact in advance Zoreslava Lulchak (+380678554511)
Uzhhorod, Ukraine (more info to come)
The Latvian Umbrella Body For Disability Organizations SUSTENTO provides helpful information about the possibilities to transport Ukranian civilians with disabilities to Latvia. Please, contact Niiara Chubarova (niiara.chubarova@sustento.lv), +371 20013797
UNICEF Hotline and UNICEF contacts in Hungary, Moldova, Poland, Romania, Slovakia and Ukraine.
UNHCR contacts in Hungary, Moldova, Poland, Romania, Slovakia and Ukraine.

Upon arriving to the EU, you are entitled to immediate assistance and immediate information about your rights. This includes temporary shelter and the fulfilment of your basic needs such as food and medicine.

You should also be identified as a person with a disability if that is the case, and your reception needs, medical and psychosocial support should be assessed.

When you have a personal interview, please make sure to ask in advance (if possible):

For necessary support in terms of sign language interpretation, information in easy to understand language or alternative ways of communicating.
To be accompanied by a support person to facilitate your communication needs and speed up the procedure

It is not the same. You can lose the benefit of temporary protection if you apply for asylum and the situation may depend on the rules in the Member States in which you are.  It is a good idea to have legal advice. Consult also our question about the Temporary Protection Directive.

Please for more information, consult here the EU Commission Information page

The Temporary Protection Directive gives you a residence permit in a EU member state for one to three years. It equally gives you a series of rights, including access to suitable housing, education, employment and self-employment, necessary assistance in terms of social welfare, means of subsistence, disability specific assistance, access to rehabilitation and medical care.

Lack of accessible services, including transport, emergency shelter, food and water, safety and security, assistance programmes for adults and children, and facilities, including accessible housing and sanitation; huge delays in crossing borders
Lack of access to medical care and medicine and basic assistive technologies, and other disability-related services such as sign language interpretation
Lack of accessible information about rights and how to claim these rights
Lack of accessible housing, and lack of access to health, education, social protection and livelihoods
Lack of accessible and safe evacuation for those who wish to leave the country

EDF is working with its partners to support people and children with disabilities in Ukraine or who have left the country. If you wish to donate support our members directly here.