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.

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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

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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.

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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.

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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.

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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

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EEG participates in Webinar on COVID 19 Recovery and the EU Budget

On the 8th July, the European Disability Forum hosted the Webinar “COVID 19 Recovery and the EU Budget: Influencing the process” where Elizabeth Gosme, President of COFACE Families Europe, attended as speaker on behalf of the European Expert Group on the transition from institutional to community-based care (EEG).

The objectives of the Webinar were the following ones:

  1. To understand more clearly what the recent amendments to the proposal for the 2021-2027 Multiannual Financial Framework mean for investing in the social inclusion of persons with disabilities, as well as to understand what role the extra funding from Next Generation and REACT EU can play in the recovery of persons with disabilities from the COVID-19 crisis;
  2. To understand more clearly why EU funding is so important for fostering inclusion among persons with disabilities, and what kind of actions we can foresee through the use of funds (with examples of investment in community-based services, and employment)
  3. To present tips guidance to national and local Organisations of Persons with Disabilities on how they can influence how money is allocated in the Operational Programmes, using the specific examples of Greece and Spain.

The speakers included Ioannis Vardakastanis, President of the European Disability Forum, Maria Tussy-Flores from ONCE Foundation Spain, MEP Katrin Langensiepen Member of the European Parliament and Chair of the Disability Intergroup, and Stefan Tromel from the International Labour Organisation (ILO).

The EEG presentation is available here and opens with reference to the statement issued by the EEG on 24th April about the impact of the COVID-19 pandemic on persons living in institutions. After that, the presentations looks into the 2021-2027 EU Multiannual Financial Framework, currently under trilogue negotiations between the European Commission, Parliament and Council. Elizabeth Gosme mentioned more specifically the horizontal and thematic enabling conditions of the Common Provisions Regulation (CPR), which impose conditionalities on the use of EU funds. These include explicit references to the use of the funds in line with the UN Convention on the Rights of Persons with Disabilities (UNCRPD) through the Horizontal enabling conditions, and to the transition from institutional to community-based care, through thematic enabling conditions. Another strong reference to deinstitutionalisation (DI) is part of Article 6 of the ESF+ regulations, and of the target groups of the Annexes to the ESF+ regulation. She referred to the role of civil society in the EU funds, with the explicit reference in CPR Article 6 to the need to involve civil society and organisations representing persons with disabilities. Finally, she invited civil society organisations and public authorities to use the EU funds checklist developed by the EEG and Hope and Homes for Children, to assess if the policy objectives of the Partnership Agreements are directed at independent living, to assess the target groups covered, to ensure funding of range of services in the community, and, finally, to identify unwelcome measures.

Other speakers mentioned two positive examples from Greece and Spain on the structured dialogue and involvement of civil society organisations in the monitoring committees for the funds, which can serve as inspiration for many countries. MEP Langensiepen provided some insight into the work of the European Parliament on the new REACT EU fund addressing the impact of COVID-19, and how it could serve to support the rights of persons with disabilities. Stefan Tromel mentioned the work of the ILO to ensure that persons with disabilities are included in employment-related initiatives, training, and the need for complementarity between UN and EU initiatives in relating to the employment of persons with disabilities, particular in view of the economic impact of COVID-19.

The meeting closed with a Q&A session with participants, including one question on the extent of progress of DI in Europe and on the barriers that still remain. Elizabeth Gosme referred to the recently published a Report taking stock of the the DI transition in EU27 in the past ten years, indicating the picture was a mix of both positive and negative trends. While there has been progress in some countries, there have been setbacks in others. But the general transition is underway and also thanks to the role played by the EU. We must keep our eyes on the objective, which is the respect of the human rights of children and adults with support needs, as enshrined in the UN Convention on the Right of the Child and of the UNCRPD. As for barriers, they can be overcome through DI strategies, which are still lacking in many EU countries. Another barrier is represented by a persisting institutional culture, which EU and its Member State can contrast by continuing impulsing a general cultural and societal shift towards person-centred and individualised support for all. Here you can more about this in the EEG Joint Statement presenting the Report.

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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

 

 

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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.

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[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

 

 

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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.

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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.

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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:

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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

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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.

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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.

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