One step forward, two steps back?

The European Expert Group on the transition from institutional to community-based care (hereinafter: the “EEG”) introduces the Report on the Transition from Institutional Care to Community-Based Services in 27 EU Member States (hereinafter: the “Report” or the “Study”). This Study comes to mark 10 years since the publication of a first important report, mandated by EU-Commissioner Vladimir Špidla in view to address the issues linked to institutional care reforms and to find solutions for more humane, person-centred and individualised models of care.

In times of the COVID-19 pandemic and lockdowns, this new Report comes at a critical juncture, where the defining negative aspects of institutionalisation (the congregation of a large number of people in one building and the deprivation of social contacts etc.) are increasingly blatant and only tend to aggravate with exposure to the virus. The way this crisis is affecting those who need daily care and their support systems stems from structural underinvestment in the inclusion and well-being of all, and in the promotion of different models of support in the community. This is also reflected in the findings of this Report. If nothing changes, the consequences of this crisis are likely to be devastating to the most vulnerable, with long-term consequences on their well-being and development. 

Again upon a mandate from the European Commission and in consultation with the members of the EEG, the authors of the present Report, Jan Šiška and Julie Beadle-Brown, inquired how far the transition from institutional to family and community-based care and support has progressed in the past 10 years. This Report offers a broad picture on situations, solutions and trends in deinstitutionalisation (DI) and community-living in the EU for persons with disabilities, with mental health problems, experiencing homeless, children (including children with disabilities and unaccompanied or separated migrant children), and older adults in 27 EU countries[2]. The picture drawn in Europe highlights the following trends:

  • there are still at least 1’438’696 persons living in institutions;
  • the number of people in institutions does not seem to have substantially changed over the past 10 years;
  • the number of children in residential care has slightly decreased, with them moving to live with their families, being fostered, adopted, or reaching majority and therefore leaving residential care for children;
  • in all the 27 EU countries, people are living in residential care, with only a small number of it being primarily small-scale and community-based, e.g. dispersed among ordinary housing in the general community. Small-scale residential services still represent a minority of the care settings in most of the 27 EU countries;
  • in some of the countries, people stayed longer in prison and hospitals than needed because of the lack of accommodation in the community, while in others institutional care was the main form of care provision for children without parental care.
  • in many countries, and especially those who started the process of deinstitutionalisation (or DI) some time ago persons with intellectual disabilities and people with complex support needs are most likely to still live in institutional settings.

Based on these findings, the Report furthermore highlights key concerns and potential solutions that have emerged from its analysis, such as:

  • The importance of person-centred and individualised support for all, including people with complex support needs, is the only way to ensure full inclusion and participation in the community. The way careis being provided, the quality of support, and their outcomes in terms of quality of life are key indicators.
  • Although DI is also about the implementation of Article 19 of the UN Convention on the Rights of Persons with Disabilities, there is very little information available on people’s lived experiences in terms of choice and control, inclusion, and participation. Understanding the impact of policies on the lives of people should be a key target. Clear definitions, shared terminology, and independent research are fundamental elements to achieve this.
  • In almost all countries, the lack of affordable community-based and social housing is one of the primary barriers to scaling up community living, and to combating homelessness; appropriate housing policies, strategies, and practices are crucial to sustaining deinstitutionalisation efforts.
  • Many of the so-called “small-scale” residential care facilities continue to accommodate large groups of people, making individualised attention and inclusion into the community rather difficult and, thereby, perpetuating a segregating culture, instead of promoting community-based alternatives.
  • Responsibility is an issue. In many of the countries where DI is one of the EU priority areas, the transition risks being perceived as an ”EU funded project”, lacking long-term sustainability, and scaling up of results beyond EU funding. Furthermore, there is a widespread transfer of responsibility from the national to the local level, not always accompanied by funding, with potential issues in terms of coordination, consistency, and competence of services. National leadership is essential in making widespread changes with multi-level and cross-sectoral coordination. National strategies on DI need to comprise adequate funding, concrete implementation, and monitoring mechanisms.

Since the European Semester, including Country Specific Recommendations (CSRs), provides the framework for continuous economic, employment, and social policy coordination in the Union, the EEG is pleased to see that this year social protection and social housing are prioritised in several CSRs. However, the EEG regrets that none of the 2020 CSRs addresses the need for DI transition. The most vulnerable population deserves adequate recovery response that would include development of prevention and community-based services.

The EEG welcomes the Commission’s intention of turning this crisis into an opportunity by investing in our future through the proposals of Recovery Plan and updated Multiannual Financial Framework. This investment must put at the centre children and adults in need of care and support, their families, informal carers, and the care and support systems which foster community, person-centred and family support.

The EEG and its members are committed to continue their advocacy efforts and to support the EU, its Member States and other key actors in their deinstitutionalisation efforts and strongly encourages them to ensure that the rights of persons in need of care and support are not to further compromised by the consequences of the COVID-19 pandemic.

Report on the Transition from Institutional Care to Community-Based Services in 27 EU Member States (2020) Jan Šiška and Julie Beadle-Brown

[1] Ad Hoc Expert Group (2009)  Report on Transition from Institutional to Community-based Care.

[2]   Austria, Belgium, Bulgaria, Croatia, Cyprus, Czechia, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherland, Poland, Portugal, Romania, Slovakia, Slovenia, Spain and Sweden.

EEG Logo

The European Expert Group on the Transition from Institutional to Community-based Care (EEG) is a broad coalition gathering stakeholders representing people with care or support needs and their families, including children, people with disabilities, homeless people, and people experiencing mental health problems; as well as service providers, public authorities and UN organisations. The Group has as its mission the promotion of person-centred, quality and empowering models of services and formal and informal care that fully respect the human rights of all people with care or support needs. The Group supports national efforts to implement the necessary reforms, in compliance with the United Nations Convention on the Rights of Persons with Disabilities (in particular with Article 19), the United Nations Convention on the Rights of the Child and the European Charter of Fundamental Rights.

————————————————————–

For more information:

Report on the Transition from Institutional Care to Community-Based Services in 27 EU Member States (2020) Jan Šiška and Julie Beadle-Brown

www.deinstitutionalisation.com

Contacts: coordinator@deinstitutionalisation.com

EEG co-chairs (January-December 2020)

Irene Bertana ibertana@coface-eu.org

Aaron Greenberg agreenberg@unicef.org

Irina Papancheva irina.papancheva@wearelumos.org

Posted in Uncategorized | Leave a comment

COVID-19 crisis: People living in institutions must not be written off

Joint Statement: “COVID-19 crisis: People living in institutions must not be written off”

The European Expert Group on the Transition from Institutional to Community-based Care (EEG) calls on EU leaders to ensure its response to COVID-19 takes into consideration persons living in institutions in Europe as they face increased risks of abuse, neglect, health issues and mental distress. Adequate funding to social and care sector is needed, as well as support to families and carers. This can prevent an increase in institutionalisation and a worsening of the conditions of those who are living in residential segregating settings.

———————————————————————————————————

As the pandemic gathers pace, public authorities are struggling to protect the health and well-being of people in need of care and support and especially of those living in residential institutions.

Whilst governments have focused on addressing the health and economic aspects of the crisis, the social care sector is being left behind, with drastic consequences on service availability. Support services are adapting to respond to new needs; however the lack of flexibility in funding is putting many community-based services at risk of closure. Some services, including homeless shelters, are forced to stay open but lack public support for protective materials, and extra staff to compensate for sick staff and more users. Residential services are often the last receiving hygienic and personal protection equipment. This results in increased vulnerability for already vulnerable groups.

The current crisis also intensifies the problems of institutionalisation: the health risks are enhanced by the concentration of people, and countless are dying in institutions, isolated from their family members. Children, older people, persons experiencing homelessness, persons with disabilities and mental health problems who are segregated in short-term and long-term residential institutions are now more vulnerable to human rights violations than ever and face increased risks of:

  • Infection: overcrowding and sometimes unhygienic conditions, lack of personal protective equipment for residents and staff, and communal life typical of institutions mean that those inside are much more prone to becoming infected;
  • Abuse, neglect, lack of care, and forced placement: there are potential staff shortages, and the isolation and ban on visits aimed at protecting the residents, hinders the supervision by families or support networks and there is also the increased risk of trafficking and exploitation;
  • Forced medication and forced restraint measures: under the pretence of preventive measures, existing safeguards may be circumvented;
  • Mental distress: preventive measures, isolation, lack of clear information, forced confinement leading to a lack of contact with the outside world, albeit necessary, impact severely on mental health of persons living in institutions;
  • Denial of medical treatment, risk of severe and possibly lethal forms of the illness: many persons living in institutions have underlying health conditions with higher risk of health complications; in countries where health services are prioritising the provision of ventilators on the basis of a patient’s expected lifespan, they can be forced to forego life-saving appliances
  • Immediate and underprepared changes to care placements: residents risk being immediately moved to different placements with little preparation, monitoring and support, which can leave them in a more vulnerable position.

Families with members with care or support needs are losing their financial stability, physical and mental health; and increased incidence of domestic and gender-based violence has been reported. When the provision of care and support is interrupted, parents and family carers are left alone to cope with the needs of their family members (personal care, therapy and other) without adequate support, respite and social protection.

There are also families, with children with and without disabilities, who have previously not been in need of social assistance, who are now in need of support. However, as they are not currently supported by any service of EU programme, the system to support families and children is not aware of them. All of these issues may lead to increased family separation and abandonment, and enhanced risk of institutionalisation.

The European Union is based on common values which include equality, respect for human dignity, and human rights. This should not be forgotten in times of crisis. The EU must urgently act, by mobilising and directing funding to ensure the safety and respect of the human rights of persons with care and support needs, of family carers and staff.

We welcome that the EU took action to respond to the crisis coordinated by the European Commission, adapting its common fiscal and mobility rules to the current situation.

We welcome the Coronavirus Response Investment Initiative that will provide resources to face the immediate consequence of this crisis. This budget will help strengthen healthcare systems, support SMEs and short-term employment schemes. We regret, though, that the social care sector, part of the frontline of this emergency, was not explicitly mentioned. We call on the European Commission and Member States to mobilise this budget to guarantee the continuity of care and support and to take the following measures:

  • Provide extra funding to support services and ensure they can meet the increased costs associated with this crisis (medicines, protective materials and staff costs);
  • Ensure services can keep on receiving their funding even in cases of online support forms which are currently not recognised by their contracts;
  • Continue the provision of family support services during the pandemic;
  • Designate providers of support services (including care, support workers and personal assistants) as ‘key workers’ who can safely work and travel to their workplace;
  • Ensure services receive personal protective equipment and other relevant medical material as needed;
  • Avoid new admissions in institutions and forced treatment by ensuring continuous access to community-based support services;
  • Introduce proactive, widespread testing and stricter preventive measures for people living in institutions, staff and support networks;
  • Ensure that persons living in institutions have equal access to treatment and ventilators;
  • Ensure that residents can contact their families and support networks outside the facility in privacy via to accessible means of communication (including for those who use non-verbal forms of communication);
  • Provide information to persons living in institutions on their rights and means to report violations, to avoid coercive measures and prevent abuse;
  • Carry out independent monitoring of the activities of institutional care facilities to ensure that residents are not abandoned or put in danger by staff shortages;
  • Support relevant agencies in developing continuity plans for situations in which the number of available staff may be reduced: reducing bureaucratic recruitment barriers and maintaining protection measures;
  • Include urgent measures to protect people experiencing homelessness living rough and in homeless shelters;
  • Allow all children and persons with care/support needs who can safely return to their families for the duration of the epidemic to do so, while providing the families with the support they need and allow children assessed for family-based care to move to their foster families;
  • Plan measures to identify emerging families at risk and contact them before family separation takes place due to increased risk of poverty, violence, mental health issues, etc.;
  • Apply emergency social security measures to families caring for people with long-term needs;
  • Involve persons in need of care or support, families and their representative organisations in the planning and implementation of emergency measures
  • Activate preventative measures to strengthen families, communities and marginalized groups of society, to avoid increases in institutionalisation.

We welcome that the Solidarity Fund can now be used for major public health emergencies and that it will be mobilized to support the most affected countries. We call on the use of part of this fund for the protection of the social and care sector:

  • To take measures to promote the prioritisation of personal protective equipment for professionals working in social services and residential facilities, in daily contact with Europeans most at risk;
  • To provide countries which lack personal protection kits with the equipment and materials they need to avoid infection, prioritising frontline employees, including staff of the social care sector;
  • To provide emergency housing, so that people are not forced into institutions.

We welcome the proposal for a Council Regulation for temporary Support to mitigate Unemployment Risks in an Emergency (SURE) to help protect jobs and workers affected by the coronavirus pandemic. Part of SURE should go to the social and care sector to keep in employment the staff of the services that had to suspend their activities, and to allow increasing income support, flexibility and take of leaves for family carers.

We welcome the actions from the European Central Bank and of the European Investment Bank to give loans to SMEs hit by the corona crisis. These funds should also be made available to the social care sector to comply with the new needs emerging from this crisis.

We remind the European Union and its Member States that they ratified the United Nations Convention on the Rights of Persons with Disabilities and the United Nations Convention on the Rights of the Child, legal instruments that need to be respected. The report Coronavirus pandemic in the EU – Fundamental Rights Implications, released by the European Union Agency for Fundamental Rights, can be a good starting point for appropriate response to the impact of COVID19 on the most vulnerable people, including people in institutions. These are humanitarian steps to prevent immediate harm of the most vulnerable in society in addressing this health crisis. The EEG calls on the EU to use this crisis to continue its process of transition from institutional to community-based services.

—————————————————————

The European Expert Group on the Transition from Institutional to Community-based Care (EEG) is a broad coalition gathering stakeholders representing people with care or support needs and their families, including children, people with disabilities, homeless people, and people experiencing mental health problems; as well as service providers, public authorities and UN organisations. The Group has as its mission the promotion of person-centred, quality and empowering models of services and formal and informal care that fully respect the human rights of all people with care or support needs. The Group supports national efforts to implement the necessary reforms, in compliance with the United Nations Convention on the Rights of Persons with Disabilities (in particular with Article 19), the United Nations Convention on the Rights of the Child and the European Charter of Fundamental Rights.

————————————————————–

For more information:

 EEG scope www.deinstitutionalisation.com

EEG webpage on COVID 19 https://deinstitutionalisation.com/2020/04/24/eeg-members-are-collecting-resources-about-the-covid-19-health-crisis/   

Joint Statement: “COVID-19 crisis: People living in institutions must not be written off” (

Contacts: coordinator@deinstitutionalisation.com

EEG co-chairs (January-December 2020)

Irene Bertana ibertana@coface-eu.org

Aaron Greenberg agreenberg@unicef.org

Irina Papancheva irina.papancheva@wearelumos.org

Posted in Uncategorized | Leave a comment

EEG members are collecting resources about the COVID-19 health crisis

Here a list of resources from the EEG members about the COVID-19 health crisis.

Autism-Europe: Webpage with COVID-19 Resources

COFACE Families Europe: Resource webpage on COVID 19 implication for families, with a section on disability

Eurochild: Resources Eurochild collected for parents, children, authorities, organisations and professionals –

European Association of Service providers for Persons with Disabilities (EASPD): Webpage the COVID-19 outbreak and Support Service Providers for Persons with Disabilities and facebook Group to share concerns, information and materials

European Disability Forum: Webpage with COVID-19 Resources

European Network on Independent Living (ENIL): Webpage with resources on independent living during COVID-19

Fundamental Rights Agency: Webpage: Coronavirus pandemic in the EU ―fundamental rights implications

Inclusion Europe: Website section with easy-to-read, video, resources and EU updates on COVID-19

Mental Health Europe: Webpage with resources on COVID-19 and mental health

LUMOS: Lumos and COVID-19 – our work continues

UNICEF: Results on COVID-19

 

 

Posted in Uncategorized | 1 Comment

Tragic care home incident in Czechia highlights need for community-based care

Joint Statement

Tragic care home incident in Czechia highlights need for community-based care

European Expert Group on the transition from institutional to community-based care

Brussels, 18 February 2020

The European Expert Group on the transition from institutional to community-based care (EEG) has been shaken by the news of a devastating fire in a care home for persons with disabilities in Vejprty in the Czech Republic, which has claimed the lives of eight people and injured another thirty.

We express our sincere condolences to the families and friends of the victims.

We wish the survivors a swift recovery and hope that they are able to overcome this traumatic experience.

Just two weeks ago the Czech Ombudsman, Anna Šabatová, called on the Ministry for Labour and Social Affairs to support independent living of people with intellectual disabilities after her visit to 9 institutions.

The evidence, including EEG report,[1] has shown that institutions are harmful for both children and adults and illustrates the urgencies to move people out of institutions into family-and community-based care.

EU leadership is critically important for ensuring this transition. It is vital the EU invest in measures that help Member States to change their care policies, procedures and practices to launch or speed up reforms.

At a national level, the focus must be on changing the social protection and welfare systems and creating incentives so that good practices become the norm, not the exception. Reforms must put individuals’ needs at the centre, strengthening social connections, and ensuring those receiving support are fully included and integrated in society.

 We call on the EU to ensure that:

  • EU funds are not spent on institutions;
  • EU resources improve the availability and the quality of family- and community-based support whilst also ensuring that the services can be sustained through domestic resources once EU funding ends;
  • EU funding supports reforms that are designed and implemented with the direct involvement of those concerned and effectively monitors spending;
  • Reforms go hand-in-hand with investment in accessible housing with quality public services which include early child education and care, education, employment, leisure and cultural activities.

 Ending institutionalisation is not only a human rights obligation. For those locked behind the walls of institutions it means having choice; it means life.

—————————————————————

[1] Report of the Ad Hoc Expert Group on the Transition from Institutional to Community-based Care https://deinstitutionalisationdotcom.files.wordpress.com/2017/11/report-fo-the-ad-hoc_2009.pdf


The European Expert Group on the Transition from Institutional to Community-based Care (EEG) is a broad coalition gathering stakeholders representing people with care or support needs and their families, including children, people with disabilities, homeless people, and people experiencing mental health problems; as well as service providers, public authorities and UN organisations. The Group has as its mission the promotion of person-centred, quality and empowering models of services and formal and informal care that fully respect the human rights of all people with care or support needs. The Group supports national efforts to implement the necessary reforms, in compliance with the United Nations Convention on the Rights of Persons with Disabilities (in particular with Article 19), the United Nations Convention on the Rights of the Child and the European Charter of Fundamental Rights.

PDF version of the statement: EEG Statement – Tragic care home incident in Czechia highlights need for community-based care

For more information: www.deinstitutionalisation.com

Contacts: coordinator@deinstitutionalisation.com

 

EEG co-chairs (January-December 2020)

Irene Bertana ibertana@coface-eu.org

Aaron Greenberg agreenberg@unicef.org

Irina Papancheva irina.papancheva@wearelumos.org

 

 

Posted in Uncategorized | Leave a comment

10 Years Towards Inclusion

JOINT STATEMENT:

10 YEARS TOWARDS INCLUSION

European Expert Group on the Transition from Institutional to Community-based care

 

Brussels, 16 January 2020

The “Towards Inclusion” conference celebrates 10 years of coordinated EU action on deinstitutionalisation.  It aims to take stock of past achievements and set a common vision for the future.

The event is organised jointly by the European Commission and the European Expert Group on the Transition from Institutional to Community-based care (EEG), which was set up in 2009, thanks to the initiative of the then EU Commissioner for Employment, Social Affairs and Equal Opportunities, Vladimír Špidla. Since then, the EEG advocates for replacing institutions with family- and community-based support, promoting person-centred, quality and empowering models of services and formal and informal care that fully comply with the human rights of children and adults with care and/or support needs.

Over the last ten years the EU has significantly contributed to moving away from institutionalisation by supporting community- and family-based care and services in its Member States.

EU officials and national governments are now far more aware of the problem of institutionalisation and of how European funds can be used to support the transition. EU funding has been instrumental in improving peoples’ lives by changing the way care and support is provided to children and adults.  Much of this impact can be traced back to the Špidla Report, the EEG Guidelines and Toolkit, the change in the ESIF Regulations and the European Union’s s efforts to facilitate access to expertise and resources.

Looking ahead, there is still a long way to go in order to reach fully inclusive societies. EU policies and funding have not always been aligned and institutionalisation remains a problem in Europe.

Over 1 million people in the EU still live in institutions, which segregate them from society and deny them control over their lives. Many more are at risk of being institutionalised as a result of lack of adequate preventative measures and family- and community-based support.

Additionally, the EU and its Member States continue to finance institutions, including by building new ones under the name of “deinstitutionalisation” reforms contravening their own policy objectives and legal obligations such as the UN Convention on the Rights of Persons with Disabilities.

When reforms are taking place, decisions on their design, financing and implementation are still too ‘top-down’.  Governments fail to adequately involve those responsible for delivering the reforms, and, most importantly, the people with care needs directly affected by the transition.

Finally, EU funding too often supports individual projects or “pilots” that represent exceptions in systems still predominantly reliant on institutions.

The 10th anniversary of the Špidla report, combined with the beginning of a new European cycle and the forthcoming programming period 2021-2027, is a moment for the EU to renew its commitment to the transition from institutional to community- and family-based care and take account of the lessons learnt.

Ending institutionalisation is a human rights obligation and can be achieved with the right mobilisation of expertise and resources.  The EU’s leadership is critically important for the successful completion of this process.

The EU must invest in measures that help Member States to change their rules, procedures and practices to launch or speed up reforms. At national level, the focus must be on changing the social protection and welfare systems and creating incentives so that good practices become the norm, not the exception. Reforms must put individuals’ needs at the centre, strengthening social connections, and ensuring those receiving support are fully included and integrated in society.

To translate the EU’s commitment to social inclusion into practice, it is essential that:

  • There is no further spending on institutions;
  • EU resources improve the availability and the quality of family- and community-based support whilst also ensuring the services can be sustained through domestic resources once EU funding ends;
  • EU funding helps to ensure reforms are designed and implemented with the direct involvement of those concerned and spending is effectively monitored;
  • Reforms go hand-in-hand with investment in an accessible built environment and quality public services including access to housing, early child education and care, education, employment, leisure and cultural activities.

We call on the EU to apply these principles and to support the transition from institutionalisation to family- and community-based support in all of its relevant legislative, policy and funding instruments, including:

  • The EU funding Regulations and their implementation;
  • The European Semester;
  • The European Pillar of Social Rights;
  • The European Child Guarantee;
  • The new European Disability Strategy or any other initiatives linked to the implementation of the UN Convention on the Rights of Persons with Disabilities.

—————————————————————

The European Expert Group on the Transition from Institutional to Community-based Care (EEG) is a broad coalition gathering stakeholders representing people with care or support needs and their families, including children, people with disabilities, homeless people, and people experiencing mental health problems; as well as service providers, public authorities and UN organisations. The Group has as its mission the promotion of person-centred, quality and empowering models of services and formal and informal care that fully respect the human rights of all people with care or support needs. The Group supports national efforts to implement the necessary reforms, in compliance with the United Nations Convention on the Rights of Persons with Disabilities (in particular with Article 19), the United Nations Convention on the Rights of the Child and the European Charter of Fundamental Rights.

————————————————————–

For more information:

10 years towards inclusion joint statement (PDF version) (FR)

www.deinstitutionalisation.com

Contacts: coordinator@deinstitutionalisation.com

EEG co-chairs (January-December 2020)

Irene Bertana ibertana@coface-eu.org

Aaron Greenberg agreenberg@unicef.org

Irina Papancheva irina.papancheva@wearelumos.org

Posted in DI, Uncategorized | 1 Comment

Towards Inclusion conference

The European Expert Group on the Transition from Institutional to Community-based Care (EEG) has co-organised, together with the European Commission, a high-level conference “Towards Inclusion 2020” on 16 January in Brussels to celebrate its tenth anniversary.

EU officials (among whom the Commissioner for Equality),  representatives of civil society, self-advocates and other stakeholders took stock of what the EU has achieved in terms of deinstitutionalisation in the past ten years and plan next steps in order to secure that all children and adults can exercise their right to family care and independent living.

Towards Inclusion conference participants (group photo)

Towards Inclusion conference participants

Vladimir Spidla, the former Commissioner Employment, Social Affairs and Equal Opportunities, who convened the Ad Hoc Expert Group on the Transition from Institutional to Community-based Care (the EEG’s predecessor) for producing the so called Spidla report addressed the conference.

‘DI is not a financial issue and saving money was not the driving force. Supporting people in their emancipation was at the heart of our work. Any people should be able to blossom, be independent, thrive,’ he said.

He also summarised the main challenges in front of the reform as being: the cost for and management of parallel services during the transition period, the building of ‘new institutions’ carrying with them the institutional culture and closing down institutions without offering alternatives.

‘Independent living is a pre-condition for equal treatment, and a cornerstone of our equality agenda. We will make sure that independent living features in all our present and future work. ​Through our European funds, where in our next programming period we have an even better chance to make sure every intended cent is spent on independent living. We share a common vision on independent living. I know it won’t be easy to make this vision a reality. The road is long, and we can only take measured steps. But I am very happy to work with you along the way towards this noble goal: A Europe where people live free and independently, regardless of disability’, said Helena Dalli, Commissioner for Equality.

‘DI is still a very important priority for the ESF in the future’, said Andriana Sukova, Deputy Director General of DG EMPL, ‘What matters most for us is to provide quality services in the community.’

Milan Šveřepa, Director of Inclusion Europe, and Jana Hainsworth, Secretary General of Eurochild, EEG Co-Chairs for 2019, outlined the achievements and the challenges which still remain in front of the reform.

‘The EU can be a catalyst for change.  We need more and better investment in services and support that allow people with care needs to live with families and in the community. EEG members draw enormous strength from campaigning together to fight for care that respects the human dignity and personal choice of every individual.,’ said Jana Hainsworth.

‘We can count a lot of achievements, like the impact on EU policies and legal framework that drove change across Europe, benefitting thousands of people who left institutions. But there is still about a million people living in institutions and thousands in danger of being institutionalised. A lot of money still goes to institutions, and sometimes what is called deinstitutionalisation still does not allow people to reach their full potential in life.’, Milan Šveřepa said.

Looking forward he highlighted the importance of working on creating good practices, pilots and examples which might drive structural change. ‘

Speakers at the conference included:

  • Helena Dalli, Commissioner for Equality (speech in full here);
  • Vladimir Špidla, former Commissioner for employment, European Commission;
  • Adriana Sukova, Deputy Director DG Employment, European Commission;
  • Katarina Ivankovic Knezevic, Director for Social Affairs, DG Employment, European Commission;
  • Jan Šiška, Charles University, Prague, co-author of draft Report on the transition from institutional to community-based care in 27 EU Member States  (see presentation here);
  • Elisabeta Moldovan, self-advocate, Ceva de spus, Romania (see presentation here);
  • Vanesa Cenjor del Rey, Hogar Sí, Spain (see presentation here);
  • Michal Ďorď, Vteřina poté, Czechia;
  • Kirsi Konola, KVSP, Service Foundation for People with an Intellectual Disability, Finland (see presentation here).
  • Full list of speakers

Commissioner Dalli with speakers Elisabeta Moldovan, Michal Dord and a Romania care-leaver at Towards Inclusion conference

Commissioner Dalli with Andreeas Novacovici, from Romania Institutionalized Youth Council and speakers Elisabeta Moldovan and Michal Dord, at Towards Inclusion conference

Some useful resources:

Posted in Seminars | Tagged | Leave a comment

Reflections on the 2019 European Semester: Country Specific Recommendations

On the 5th June, the European Commission published the Country Specific Recommendations (CSRs), tailor-made policy advice to Member States on how to improve the impact of policies and better invest resources. In the last few years, the European Expert Group on the Transition from Institutional to Community-based
Care (EEG) has closely followed and worked on the European Semester process to ensure that policies on the transition from institutional to community-based care would be adequately integrated and monitored in the process.

Earlier this year, the EEG prepared its reflections on the 2019 Country Report, analysing how the state of deinstitutionalisation in various EU Member States was reflected and providing advice to the European Commission in the drafting of the CSRs. Following the CSRs publication, the EEG has prepared its reflections taking into account its recommendations issued following the Country Reports. These reflections also include recommendations on what should be included in the Operational Programmes for the post-2020 funding period and the next investment priorities.

To read the EEGs reflections on the CSRs, please click the link below.

Link: EEG reflections on the 2019 CSRs

Posted in Reports | Tagged | Leave a comment

Progressing Independence: The EU “Start Your Career” Project

Recently the Council showed a glimpse into their “Start your career” project taking place in the Czech Republic. The project aims to prepare people for the labour market, allowing people to regain their independence through work. According to Zuzana Thürlová, a social worker linked to the project, 85% of people within the project who have previously passed through the social services system find paid employment.

For more information and to see the personal story of Jaroslav, who has come from institution to independence through the project, please click this link.

Posted in Uncategorized | Tagged | Leave a comment

The Academic Network of European Disability Experts (ANED) releases thematic Report

In May, ANED released a new thematic report concerning the advances across Europe to   “respect, protect and ensure the rights of persons with disabilities to live independently and to be included in the community”. The report is based on several studies completed by ANED country experts earlier this year across 35 European States.

The report can be found at this link, along with East-to-read versions and country focuses.

Posted in Reports | Tagged , | Leave a comment

EEG meets Members of European Parliament to discuss how next EU budget can support deinstitutionalisation

On Wednesday, 10 October 2018, the European Expert Group on the Transition from Institutional to Community-based Care (EEG) held a technical meeting entitled “Future of the EU funds for the transition from institutional to community-based care”. The event brought together Members of the European Parliament (MEPs) from the REGI and EMPL committees, European Commission officials and civil society to discuss how the 2021-2027 Multiannual Financial Framework (MFF) can support the transition from institutional to community-based care. The meeting was hosted by MEP Brando Benifei on behalf of the European Parliament Intergroup on Child Rights and the Intergroup on Disability Rights.
The meeting started with opening remarks from the event’s host, MEP Brando Benifei and Sabrina Ferraina, co-chair of the EEG. They both mentioned the importance of the topic discussed and acknowledged the existing commitment of the EU towards the transition from institutional to community based care during the 2014 – 2020 funding period.
“During the 2014-2020 funding period, the European Structural and Investment Funds have been a key component in the transition from institutional to community-based care, benefiting children and families, people with disabilities and people with mental health problems,” said Ms Ferraina.  “Yet, more than 1 million children, persons with disabilities, people with mental health problems and homeless people continue to live in the long stay residential institutions, segregated from society in Europe,” she added.
MEP Brando Benifei said that collectively more has to be done to provide community-based care for social inclusion in the EU and that EU funds cannot be allowed to go to institutions or other arrangements not respecting freedom and the UN Convention on the Rights of Persons with Disability (UNCRPD) (source: https://twitter.com/misver/status/1050028053332512769)
When speaking of the European Commission’s proposal on the Common Provision Regulation (CPR) and the significance of EU funds in fostering deinstitutionalisation and supporting the inclusion of persons with disabilities, MEP Helga Stevens (ECR) mentioned that references to non-discrimination and accessibility have been deleted from the proposed regulations, while these principles are included in the article 7 of the current CPR 1303/2013. “The proposed deletion or omission of non-discrimination and accessibility is not acceptable as this goes against CRPD,” MEP Stevens said.
She also noted that accessibility should be applied as a horizontal principle in the use of the Funds that CPR governs. “Accessibility, as well as participation of persons with disabilities, should be part of the criteria when selecting projects eligible for EU funding. Clear and transparent accessibility provisions should be included in the CPR proposal,” she added. “In concrete terms this means that the whole application procedure for EU funding should be transparent and accessible. When a call for projects is launched, this should be widely published so that everyone is aware of it, and so all organisations can have an equal chance of submitting project applications and competing for EU funds. This also means that information about the call for projects should also be provided in sign languages, easy-to-read and braille formats, and compatible with screen-readers,” MEP Stevens concluded.
She continued with demands to insert a specific reference to non-discrimination and accessibility in the Regulation, similar to the way gender equality has been included in Article 67. Furthermore, MEP Stevens stressed that EU funds should not be used to promote or continue institutionalisation or segregation. Proposed projects should be carefully screened to ensure that they actually contribute to inclusion of persons with disabilities in the society. “The best way to find this out is to check whether persons with disabilities themselves are playing an important role in selecting, implementation and monitoring of project proposals,” MEP Stevens said.
Katerina Nanou, EEG member and Policy and Advocacy Officer at Eurochild agreed with MEP Stevens on the importance of re-introducing article 7 on promotion of equality between men and women and non- discrimination. She added that EEG we will continue asking for this reference. She also mentioned that CPR should, indeed, prohibit the use of EU funds for institutionalisation or segregation of people. “The EEG community is glad to see that the ex-ante conditionality 9.1, which played an important role during the 2014-2020 funding period as it prioritised deinstitutionalsiation reforms in 12 Member States, has now been strengthened,” Ms Nanou said. “The EEG community calls on the European Parliament to maintain measures for the transition from institutional to community-based care under enabling condition 4.3 on poverty reduction and social inclusion, which now applies to all EU Member States. In addition, measures indicating participation of civil society and social partners in design and delivery of the national strategies for poverty reduction and social inclusion – which is a great novelty of current enabling condition 4.3 – must be maintained”. With regards to the Partnership Principle, Ms Nanou said that although it is important to have the principle included in the proposed regulations, the European Code of Conduct on Partnership requires further revision, based on the lessons learned in the current funding period.
MEP Brando Benifei (S&D), Vice-President of the Disability Intergroup, Member of the Children’s Rights Intergroup and ESF+ Shadow Rapporteur noted that there is a tendency to insist that the EU remains competitive. “At the same time, we should not forget that ESF+ should be supportive of the social funding for the Member States, especially in terms of the outreach to the most marginalised groups,” he added. He pointed out that one of the challenges he observed in many Member States has been the outreach. “We are not reaching those who are in most need to be reached, those who don’t have other opportunities,” MEP Benifei said. To address this, final provisions for the European Social Funds Plus (ESF+) need to explicitly mention accessibility. Furthermore, explicit mention of deinstitutionalisation, especially for those with multiple and intersectional discrimination, including children, should be included in the Articles 4 and 6 of the ESF+ regulations, according to MEP Benifei.
In addition, MEP Benifei spoke about a brand new specific objective that aims to increase access for persons with disabilities in the ESF+ regulations.  He said that Disabled persons’ organisations (DPOs) need to be provided with space in the multilevel governance principle and the monitoring committees. All documents need to be available in accessible formats with sign language interpreting available at the meetings.
In the innovations strand, guidance on the deinstitutionalisation of services should be developed for the implementation of the European Pillar for Social Rights. He echoed MEP Helga Stevens, saying that funds should not go to institutional settings, which do not allow dignity or freedom of choice.
Marie Anne Paraskevas, Senior Policy Expert at DG EMPL, European Commission mentioned that, in terms of deinstitutionalisation, DG EMPL kept the model of the 2014-2020 programming period by including the Article 6 on equality between men and women. Ms Paraskevas also expressed concern about the deletion of provisions on accessibility from the ESF+ regulations due to simplification. “The European Code of Conduct on Partnership, indeed, should and will be revised,” said Ms Paraskevas. At the same time she noted positive developments in the proposed CPR, such as obligation of the Member States to include all stakeholders with equal voting rights and balanced representation.
Nadia Hadad, EEG member and ENIL board member explained the important role of the ESF+ in promoting the transition from institutional care to family and community-based care, as well as timely and equal access to quality, affordable, non-segregated, sustainable and inclusive education and training and community-based care services. She stated, however, that in the next funding period, Erasmus+ needs to support independent living, as progress until now was slow. Ms Hadad added that it cannot subsidise institutions that segregate persons with disabilities and can’t fund staff costs in institutional care. Ms Hadad added that it is important to ensure that in the next ESF+ there is an adequate amount of funds for social inclusion, as many Member States exceeded the allocation of 20% in the current programming period. This, in turn, will strengthen the contribution of Funds to social inclusion of different groups. For this, “the earmarking for social inclusion should be increased to 30%”, Ms Hadad concluded.
MEP Julie Ward (S&D) from the REGI committee took the floor saying that, as a member of Parliamentary Intergroups on Disability, Poverty, Youth and Child Rights, she has a direct responsibility to ensure that ERDF and CPR regulations prioritise the transition from institutional to family- and community-based care.
Ms Ward shared three key points that institutions should be reminded of. First of all, there is the historic signing of the European Pillar on Social Rights which was adopted one year ago. “It should never just be a signature with a nice picture. It needs to be translated into a real change,” MEP Ward said. Next, Ms Ward highlighted the importance of Child Guarantee which provides children with an opportunity to grow up included in societies, without being at risk of poverty. “We need to fight for this as there is no consensus. We need to shame politicians who sign up for things and don’t follow through,” stated MEP Ward. Finally, she mentioned that resources are very important and that the EU and the Member States should ensure that they continue fund the transition from institutional to community-based care.
MEP Ward raised concerns with regards to the halt of financing from the EU of the European Network on Independent Living and she said that the EU should re-consider its decision. “Such networks as ENIL should be funded as they are the voices of thousands of people across Europe asking for their right to live independently in the community,” MEP Ward concluded.
Speaking on behalf of the European Commission, Andor Urmos, Policy Analyst at DG REGIO, said that simplification in the proposed regulations for the next MFF is done not only to get rid of bureaucracy, but also to simplify access to funding; it is also to make clear that the rule of law applies, he added. “There is no need to repeat things all the times,” Mr Urmos said. “There is plenty of misuse when it comes to EU funding. Interpretations of text change in different countries, especially on what counts as community-based services. When it comes to Partnership Principle, many Member States do not take into account important stakeholders. Sometimes there are politically driven partnerships. This is something that needs to be tackled”. Finally, he mentioned that many stakeholders are either misinterpreting the rules or abusing them. “We need to look at how we ensure enforcement, and this could be an issue of litigation,” Mr Urmos concluded.
Susanne Bosman, EEG member and Programme Associate at UN Human Rights Office (OHCHR) shared the EEG’s concerns about the weakened text of the proposed European Regional Development Fund (ERDF) regulations. She said that although the EEG community understands the rules of simplification, it is important to re-introduce the transition from institutional to community-based care as an investment priority in the proposed ERDF regulations. “Under the Article 6, which stipulates which activities should be excluded from the scope of ERDF and Cohesion Fund, an explicit reference prohibiting the use of funds for building or refurbishing of institutions should be included. We need to ensure that these regulations clearly indicate that no funds can be used for the segregation of people,” Ms Bosman concluded.
Milan Šveřepa, EEG Co-Chair and Director at Inclusion Europe closed the meeting by thanking MEP Brando Benifei for hosting the event and MEPs Helga Stevens and Julie Ward for intervening and sharing their thoughts on how the future MFF should prioritise the transition from institutional to family- and community-based care. He said that EEG is tabling amendments for the proposed regulations on European Regional Development Fund, European Social Funds Plus and the Common Provision Regulations. “I remain confident that the EU will continue championing the rights of people in vulnerable situations who are either at risk of or are being institutionalised,” he concluded.

Posted in Seminars | Tagged , | Leave a comment