Joint statement of the EEG-DI. Brussels, 2 May 2024

Call for stronger prevention of child institutionalisation:

Time to step up monitoring and evaluation of early childhood intervention and family support in the European Child Guarantee

The European Expert Group on the transition from institutional to community-based care (EEG) welcomes the initiative of the Belgian Presidency of the Council of the European Union to host the knowledge-sharing Conference “European Child Guarantee: from engagement to reality” on 2 and 3 May 2024. The EEG welcomes that many National Action Plans (NAPs) include measures in the area of deinstitutionalisation (DI) for children but calls for increased emphasis on prevention and early intervention, including Early Childhood Intervention (ECI) and support to parents and carers, to be monitored at national and EU level and addressed in the updated versions of NAPs.

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Enacted in June 2021, the European Child Guarantee represents a crucial step towards combating social exclusion by facilitating access to essential services and has catalysed momentum for the deinstitutionalisation of children. It identified children with disabilities and children living in alternative care among its target groups and invited Member States to enhance social protection, prevent children from being placed in institutional care, and ensure their transition to quality community-based and family-based care. Importantly, it also encouraged them to facilitate the early identification of developmental issues and health needs, and to provide habilitation and rehabilitation services for children with disabilities.

Overall, the Child Guarantee tackles many drivers of child institutionalisation, including poverty and lack of access to services, especially for children with disabilities. This is in line with the commitment of the EU to ensure the transition from institutional to family and community based care in its most important policies^[1] and funding regulations.^[2] These also include the 2024 Commission Recommendation on developing and strengthening integrated child protection systems in the best interests of the child,^[3] encouraging investment in non-residential services, including accessible housing for children with disabilities, and calling for the promotion of national deinstitutionalisation strategies for deinstitutionalisation, ensuring adequate support for foster families and comprehensive support programmes for young people with care experience.

Importantly, as a party to the UN Convention on the Rights of Persons with Disabilities, the European Union is required to ensure full enjoyment of all rights by children with disabilities “on an equal basis with other children.” This includes deinstitutionalisation, including the requirement not to invest any public or private funding into institutions for children.

This role of the Child Guarantee in implementing deinstitutionalisation has also been reiterated in The European Parliament’s Resolution Children first – strengthening the Child Guarantee, two years on from its adoption (2023/2811(RPS)) stressing the need for ‘’Time-bound targets for bringing children out of institutions and into family and community settings’’. Further, it adheres to the European Parliament’s Report ‘’Reducing inequalities and promoting social inclusion in times of crisis for children and their families’ (2023/2066(INI)), highlighting that “child protection measures, including deinstitutionalisation, are also essential for children to achieve their rights and reach their full potential’’, and recommending that ‘’Member States develop proactive social policies to tackle the root causes of child institutionalisation, ensuring that it is not because of poverty and exclusion that children are institutionalised’’.

Nevertheless, almost three years after its adoption, across Europe hundreds of thousands of children still live in institutions, isolated from their families, their peers and local communities. An institution is any residential care facility where residents are isolated from the broader community, do not have enough control over their lives or decisions affecting them, and which is characterised by features such as depersonalisation, lack of individualised support, or limited contact with birth families or caregivers. “Family-like” institutions, including large or small group homes, also fall within the definition of an institution and should not be considered as a substitute for a child’s right to grow up with a family.^[4]

Growing up in an institution can severely damage children’s cognitive, social, and emotional development as well as autonomy. Children do not learn basic life skills or how to manage their own lives while they are kept in institutions, and are thus unprepared for life in the outside world.^[5] Child institutionalisation has devastating consequences not only on the affected children and their families, but on society as a whole, by exacerbating stigma and social isolation, and feeding the intergenerational cycle of disadvantage.

Deinstitutionalisation requires a structural transformation of the social-care and child-protection systems. This includes preventative measures addressing children and families, to avoid children being placed in institutions in the first place, through access to mainstream services, healthcare, education, and welfare systems, as well as parents’ financial support, and programmes to foster kinship and foster care.^[6] It further requires that children, including children with disabilities, are involved in decisions made about them and that their opinions are given due weight in accordance with their age and maturity.^[7]

The EEG welcomes that several countries included measures to support children in alternative care and/or advance reforms linked to deinstitutionalisation in their National Action Plans (NAPs).^[8] However, we noticed that in some cases, these measures are limited and not part of a comprehensive framework, are not accompanied by the right type of support for local authorities to put them in place, and their implementation can be rather slow.^[9]

Prevention and early intervention should lead the development of alternative care programmes for all children, which should always be implemented with the best interest of the child as their guiding principle. For children with disabilities, overrepresented in institutions, family-centred Early Childhood Intervention (ECI) services are key in preventing institutionalisation as they empower children and families, and foster inclusion in education. ECI services provide individualised and intensive support to families with infants and young children with or at risk of experiencing developmental delays, or disabilities and support primary caregivers to improve their interactions with the child and build their capacities.^[10]

The EEG regrets that actions towards the strengthening of Early Childhood Intervention (ECI) systems and support to family and carers are present only in a minority of countries, and mainly focusing on the early identification of developmental delays and disabilities, rather than in the provision of support to families and children.^[11] It is clear that policies tackling the barriers for children with disabilities can only be efficient if accompanied by social protection and financial support to their families and carers, however, such measures are rarely found in the NAPs.^[12]

Gathering evidence and monitoring progress are crucial components of child rights policies. We thus embrace the adoption of the European Monitoring and Evaluation Framework in December 2023, that will guide the biennial reporting by Member States. It is a great achievement that one of the six main indicators focuses on the number of children in alternative care, broken down by care type; and share of children in residential care. This is a key milestone to monitor the progress on deinstitutionalisation and to provide comparative data for the EU, which should be complemented by national indicators and data collection efforts to improve the understanding of the demographics and needs of children in alternative care.

The EEG calls on Member States to:

1. Place measures towards deinstitutionalisation at the heart of their NAPs  starting from prevention,  through the development of community-based and family-based services, including systems of family-centred Early Childhood Intervention, financial support to families, and of foster care programmes.
2. Put the necessary measures in place to ensure that social welfare, social protection, and social services prioritise the strengthening of families and communities, taking proactive measures to prevent unnecessary separation of children from their families.
3. Advocate for the social and human rights model of disability, focusing on dismantling barriers faced by children or caregivers with disabilities when accessing services, and ensuring that children with disabilities receive adequate support within their family environments and to ensure they can access their right to inclusive education.
4. Support safe family reunification and transition to independent living based on individual needs and circumstances. Provide ongoing support for families and care leavers to facilitate their full inclusion into the community, as well as for young people with personal experience of care. This includes access to personal assistance for children and young people with disabilities in need of such support.
5. Ensure meaningful participation of children, caregivers, parents, persons with disabilities, and civil society organisations, including organisations of persons with disabilities, in the implementation, revision and monitoring of the NAPs.
6. Address and combat stigma and discrimination within the system, including challenging ableism, gender norms and discriminatory social attitudes towards marginalised communities that could lead to child institutionalisation.
7. Implement a systematic approach to disaggregating data across all sectors, including housing, parental or child disabilities, living arrangements, and social protection programmes. This approach should enable regular assessments of progress in transitioning to community-based support services.
8. Align national monitoring and evaluation frameworks, including the indicators, with the EU Monitoring and Evaluation framework on children in alternative care. Improve data collection of children and families at risk, on the one hand, and of the available services, on the other hand.

The EU holds significant sway over national policy development, which can be achieved by:

1. Fostering exchange between Member States on effective measures in the area of deinstitutionalisation for children and developing a study on EU-level effective deinstitutionalisation and ECI policies and practices.
2. Formulating EU Guidelines on DI for children including prevention, and guidance on how to establish and improve national Early Childhood Intervention services and systems.
3. Increasing the use of EU financial tools for DI for children and measures to tackle the drivers of child institutionalisation, through prevention and early intervention programmes with the child’s best interest at heart, including ECI system development and better coordination with general measures targeting families such as access to income, quality ECEC services and work-life balance, and piloting personal assistance for children and young people with disabilities.
4. Ensuring effective implementation of the UN CRPD at EU level, including through improved intersectional and intersectoral coordination at the European, regional, national and local levels, and with full participation of persons with disabilities and their representative organisations.
5. Implementing the measures linked to deinstitutionalisation included in the  2024 Commission Recommendation on developing and strengthening integrated child protection systems in the best interests of the child.

We hope that this Presidency event will be used as an opportunity for Member States to plan coordinated efforts towards the inclusion of all children and ensure that children receive care in a family and community-based environment.

For further information: https://deinstitutionalisation.com/

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^[1] The recent guarantees towards child protection enshrined in EU policy frameworks and initiatives include the Strategy on the Rights of the Child (2021), The Strategy on the Rights of Persons with Disabilities (2021-2030), the European Child Guarantee (2021) and the EU Action Plan on Human Rights and Democracy (2020-2024).

^[2] These EU Funding instruments include the Common Provisions Regulation (2021), the European Regional Development Fund and Cohesion Fund (ERDF/CF), the European Social Fund Plus (ESF+) Regulation (2021) The Neighbourhood, Development and International Cooperation Instrument (2021-2017) and the third Instrument for Pre-Accession Assistance (2021-2027).

^[3] Commission Recommendation of 23.4.2024 on developing and strengthening integrated child protection systems in the best interests of the child

^[4] General comment No. 5 (2017) on living independently and being included in the community, CRPD/C/GC/5, paragraph 16(c)

^[5] Opening Doors for Europe’s Children, (2017). Deinstitutionalisation of Europe’s Children, Question and answers https://www.eurochild.org/uploads/2021/02/Opening-Doors-QA.pdf

^[6] European Expert Group on the transition from institutional to community-based care (2022), EU Guidance on Independent living and inclusion in the community https://deinstitutionalisation.com/wp-content/uploads/2022/12/eu-guidance-on-independent-living-and-inclusion-in-the-community-2-1.pdf

^[7] UN Convention on the Rights of Persons with Disabilities, Article 7 (Children with disabilities)

^[8] These measures were included  for 16 NAPs – BE, BG, HR, CY, CZ, FI, FR, EL, IT, LX, MT, PL, PT, RO, ES, and SE in March 2023. Children in alternative care in the Child Guarantee National Action Plans. A summative analysis, (2023) United Nations Children’s Fund (UNICEF) and Eurochild https://eurochild.org/uploads/2023/05/Children-in-alternative-care-in-the-Child-Guarantee-NAPs_DataCare-analysis.pdf

^[9] Children in alternative care in the Child Guarantee National Action Plans. A summative analysis, (2023) United Nations Children’s Fund (UNICEF) and Eurochild https://eurochild.org/uploads/2023/05/Children-in-alternative-care-in-the-Child-Guarantee-NAPs_DataCare-analysis.pdf

^[10] EASPD (2022). Family-centred Early Childhood Intervention:The best start in life. Position paper. https://easpd.eu/fileadmin/user_upload/Publications/Family-Centred_ECI_PP_EASPD_The_best_start_in_life.pdf

^[11] EASPD (2023). What place for young children with disabilities in the Child Guarantee National Action Plans? https://easpd.eu/fileadmin/user_upload/Publications/EU_Child_Guarantee_National_Action_Plans.pdf

^[12] COFACE. (June 2023). Child Guarantee Assessment. https://coface-eu.org/wpcontent/uploads/2023/06/COFACE_CGAssessment_June2023.pdf

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Media release. Brussels, 4^th December 2023.

UN International Day of Persons with Disabilities

Persons with disabilities have the right to live independently, included in the community, and to family life. To mark the 2023 UN International Day of Persons with Disabilities, the COFACE Disability Platform places the spotlight on family carers. Their crucial role can significantly boost the fulfillment of the rights outlined in the UN Convention on the Rights of Persons with Disabilities, provided they receive adequate support. A COFACE Disability “Thematic Note” was developed to contribute to policy discussions and help find constructive solutions.

As the formal Long Term Care sector is facing dramatic shortages in services and staff that has consequences on the entire society[1], the pressure on family carers is increasing. With the implementation of the European Strategy on the Rights of Persons with Disabilities and the European Care Strategy, the COFACE Disability Platform, while keeping the human rights of all as guiding objective, wants to stress the need to urgently address the needs of all family carers beyond measures to support access to the labour market. The impact on their physical and mental health related to the provision of care and support is real, especially as they are advancing in age.

Chantal Bruno, Co-president of the COFACE Disability Platform said : If the EU is serious about transforming long-term care systems in a human rights-centered manner, it should not consider care only as an economic good but as an enabler of rights and dignity for all.”

Since the proclamation of the European Pillar of Social Rights and the COVID-19 crisis, family carers have entered the political discourse. After being neglected and forgotten and after years of advocacy from COFACE Disability Platform, the European Union and the EU Member States seem to have finally recognised that care and support is not a private matter only but a public and political one and should be addressed as such. However, to respond to the needs and challenges in an appropriate manner, family carers must first be identified.

Annemie Drieskens, COFACE President said: It is crucial during the transformation process of the care system to identify the role and responsibility daily taken by millions of family carers across Europe. Caring is timeless, family carers of all ages should be recognized for their valuable role in caregiving and receive targeted support adapted to their situation.”

In the newly released Thematic Note, the COFACE Disability Platform offers reflections on the life course perspective adopted in the 2022 Council Recommendation on access to affordable high-quality long-term care, to explore how family carers of different ages face different challenges and how to support them in accessing resources, time and services.

On the 2023 International Day, COFACE Families Europe calls on the European Commission and to EU Member States to swiftly implement measures under the European Strategy of the Rights of Persons with Disabilities and the European Care Strategy that ensure a global reform of the care and support system based in the community and aiming to promote the human rights of all.

Read the thematic note here.

ENDS//

Note to editor

• Joint statement: Building up European care capital – sustainable investments, not burdensome costs, (COFACE, 2023)
• Family Organisations welcome the European Care Strategy and call for swift adoption by EU Social Affairs Ministers (COFACE, 2022)
• EU Work-life Balance Directive transposition in action: A mixed picture (COFACE, 2022)
• From Words to Actions: Shedding light on the S.H.I.F.T. towards meaningful inclusion in Europe (COFACE 2021)
• S.H.I.F.T. A guide to shift towards meaningful inclusion of persons with disabilities and their families (COFACE 2019)
• EUROPEAN CHARTER FOR FAMILY CARERS, (COFACE, 2017)

For more information, please contact Bettina Guigui: bguigui@coface-eu.org

[1] October 2023 Joint Statement of 17 European and international NGOs

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Media release, International Day of Persons with Disabilities 2022 – Brussels, 2^nd December 2022

In the run-up to the 2022 International Day of Persons with Disabilities, the COFACE Disability Platform for the rights of persons with disabilities and their families is launching a policy brief looking at how children with disabilities are represented in recent EU Social Policy Frameworks. With this brief COFACE Disability wants to launch a reflection on the intersection between disability and age and how to integrate it into policies and programmes. For this EU Year of Youth COFACE Disability has focused this brief on Children with Disabilities and their families.

Children with disabilities are at the intersection of various policy fields. As persons with disabilities, they are supposedly covered by disability-specific policies and as children, their rights are protected by child-focused policies, given that they are disability-inclusive. While there should be an increased opportunity to advance the rights of children with disabilities and there are noticeable efforts to address intersecting vulnerabilities in EU social policies, much still needs to be done as children with disabilities fall through the cracks of “siloed” policy-making.

With this brief, the COFACE Disability Platform wants to launch a reflection on how to design better policy responses for children with disabilities and their families. The interrelated well-being of children and their families is now an acknowledged trait in recent EU policies and this whole-family approach is even more crucial for children with disabilities whose families need to be supported in order to create a safe a nurturing environment where children can grow up and develop according to their needs and wishes. This brief intends to extend the reflection to these families and how the focus on the intersection of disabilities and age (and more) can lead to better outcomes for children with disabilities and their families.

Chantal Bruno, COFACE Disability co-chair said: “COFACE wants to trigger a S.H.I.F.T. from children with special needs to children who require special responses and support. All children, all individuals have special needs as we are all unique, and the same goes for children with disabilities. By focusing on special responses, we can break the silo thinking in policy making and develop more intersectional and person-centered policies and programmes.”

By looking at recently adopted frameworks under the European Pillar of Social Rights Actions Plan, the COFACE Disability Platform intends to map and reflect on the state of play of the inclusion of the rights of children with disabilities in EU policies. Building on the expertise of COFACE Disability Platform members, this brief intends to explore the dynamics in EU Social either through the development of strong disability-focused policy or by integration of disability-inclusive measures across the social policy board.

Read the full policy brief here.

//ENDS

Notes to editor:

–Family Organisations welcome the European Care Strategy and call for swift adoption by EU Social Affairs Ministers (COFACE, 2022)

–EU Work-life Balance Directive transposition in action: A mixed picture (COFACE, 2022)

–From Words to Actions: Shedding light on the S.H.I.F.T. towards meaningful inclusion in Europe (COFACE 2021)

–Early childhood education and care: A tool for child education, reconciliation of work and family life, and a caring and inclusive economy (COFACE 2021)

–S.H.I.F.T. A guide to shift towards meaningful inclusion of persons with disabilities and their families (COFACE 2019)

For more information, please contact Camille Roux: croux@coface-eu.org 

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COFACE Disability Policy Brief

Breaking policy silos to better support children with disabilities and their families

#BeTheSHIFT #IDPD2022 #DisabilityRights #ChildRights #childrenwithdisabilities

In the run-up to 2022 International Day of Persons with Disabilities, the COFACE Disability Platform for the rights of persons with disabilities and their families launched a policy brief looking at how children with disabilities are covered in recent EU Social Policy Frameworks. With this brief COFACE Disability wants to launch a reflection on the intersection between disability and age and how to integrate it in policies and programmes. For this EU Year of Youth COFACE Disability has focused this first brief on Children with Disabilities and their families.

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The aim of this policy brief is double:

• First to take stock of how children with disabilities are covered in EU social policies;
• Second to launch a broader reflection on how to deepen the interaction between disability and age in policy making.

In this exercise, the COFACE Disability Platform has looked at some recently adopted EU frameworks. This brief does not have the ambition of offering a holistic view of all the EU policies and measures that can have an impact on children with disabilities and their families, rather it aims to lay down the foundations for reflection around the development of more inclusive and intersectional policies, with a specific focus on policies falling under the European Pillar of Social Rights Action Plan:

• The European Child Guarantee;
• The European Strategy on the Rights of the Child;
• The European Strategy for the Rights of Persons with Disabilities 2021-2030;
• The European Care Strategy.

The policy brief starts with clarifications, describing the whole-family lens of the 2030 COFACE Child Compass as well as key references to children in international and EU human rights law. Then follows the analysis of the selected EU policy frameworks, giving an overview of measures which specifically include or target children with disabilities. This leads into a reflection on interrelated well-being of children and their families, highlighting the need to consider children with disabilities within their family and community context to ensure two-generation supports are put in place for positive and sustainable outcomes. The concluding section reflects on the results of the analysis and on the steps needed to address gaps at the intersections of these EU social policies.

Read the full brief here.

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The UN Convention on the Rights of Persons with Disabilities (CRPD) represents a milestone for the promotion of human rights and equal treatment in Europe and worldwide. The CRPD recognises that ‘ disability is an evolving concept’, resulting from ‘the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society ’. Above all, it identifies persons with disabilities as right-holders rather than passive beneficiaries of welfare and medical assistance : this paradigm shift in the understanding of disability – from a medical to a social and human rights model – remains one of the Convention’s most innovatory aspects.

Several articles in the CRPD also affect, directly or indirectly, the rights and wellbeing of family members of persons with disabilities.

This publication adopted ten years ago in 2012 consists of the COFACE position on the family dimension of the UNCRPD, followed by the integral text of the Convention. The COFACE position is the outcome of the work done by its members within the COFACE Disability platform for the rights of persons with disabilities and their families.

The first aim of this paper is to illustrate the main implications of the CRPD for the improvement of the rights and wellbeing of persons with disabilities and their families, recalling Member States’ and EU’s role in this regard. Moreover, this position intends to raise awareness on the scope and relevance of the Convention among family organisations, policy makers and other representatives of civil society, in order to promote advocacy activities and facilitate the dissemination of the CRPD at national and European levels.

Finally, we chose to publish the integral text of the Convention to support the dissemination of this document, which is a keystone for the human rights system in Europe.

See full publication here in English and French.

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Media statement. Brussels, 8th September 2022.

COFACE Families Europe welcomes yesterday’s adoption by the European Commission of the European Care Strategy. With this decision, set in the framework of the Action Plan on the European Pillar of Social Rights, the European Union reaffirms its willingness to advance towards  the inclusive and community-based care system of tomorrow. This integrated and fair care infrastructure should cater to the care and support needs of all from birth to old age, while fostering gender equality and the social recognition of family carers.   We call on Member States to swiftly adopt the recommendations and to implement reforms to transition to a sustainable care model for all families and their members.   

 
The European Care Strategy, launched on 7th September 2022, contains a Communication and two Proposals for Council Recommendations aiming to create a sustainable and fair care system. The vision laid out in the documents caters for the needs of persons needing care, but also to the families and professionals providing it while giving indications on how to improve the well-being of families and family carers. The documents intend to SHIFT the European care debate toward a sustainable model that fosters gender equality, paying attention to users’ rights, independent living, and inclusion in the community.    

With the two Proposals for Council Recommendations, covering the topic of care from birth to old age, the European Commission is providing the building blocks of a long-awaited reform of Early Childhood Education and Care (ECEC) and Long-Term Care (LTC) systems to transition to community-based solutions respecting individual choices and supporting families.  The two proposed Recommendations are framed by the Communication which sets the scene for a Europe that cares.  COFACE believes the European Care Strategy offers an opportunity to create an EU inclusive of all families and their members that COFACE has been defending for more than six decades. 

“The Strategy proves that the European Commission recognises that care is a responsibility of the whole society and not only of families.  COFACE welcomes this Strategy that paves the way and encourages the development of national policies investing in high quality childcare and support to family carers.    ”  

Anne-Mie Drieskens, COFACE Families Europe President.  

Revised targets for a more efficient and inclusive ECEC for children and their parents.  

The proposed ECEC Recommendation calls for reforms to ensure all children have a legal entitlement to access quality services adapted to their needs while supporting parents in their parenting journey and career choices. This two-generation approach, bringing together the needs of parents with the rights of children is crucial for family balance and well-being.  

COFACE particularly welcomes the European Commission push for the provision of adequate  child/staff ratios as one of the measures to ensure quality in ECEC, continuous professional training of staff, and the inclusion of intensity/time requirements in the indicators. This last point is particularly important for children with disabilities who sometimes can only access ECEC services for a few hours a week -when they can access it-, the suggested targets are therefore appreciated and their extension to all children, regardless of their family background, origin, or disability status, should be specified in the upcoming Council Recommendation.  Finally, COFACE highly appreciates the attention paid to parents with disabilities in the ECEC Recommendation, as they and their families are too often invisible.

We call on the Council to swiftly adopt the Recommendation and to work to integrate the targets in their current work on fighting child and family poverty and social exclusion under the European Child Guarantee by using this recommendation to strengthen actions on access to high-quality, affordable and accessible ECEC services for all children.  

Pushing for strong national actions plan covering the full spectrum of Long-Term Care.  

The proposed LTC Recommendation presents guidance on how to respond to the complexity of the long-term care equation respecting the needs and rights of both care receivers and providers. It displays a broad vision of what constitutes care, offering therefore a continuum of care to ensure appropriate support. The importance of family/ informal care is stressed as an element of a sustainable care system with recommendations to provide appropriate support to family carers with financial resources, time arrangements – notably building on the new rights in the EU Work Life balance directive – and respite care; as well as facilitating the collaboration with formal care services. COFACE welcomes the recognition of the central role of family carers and the consideration of their reality and needs in the recommendation. We call on EU Members States in their National Action Plans to directly involve family carers and their representative organisations to develop strong and comprehensive measures to ensure that family care is a choice and not a necessity and to support people making that choice in their essential role. They should also include concrete steps for the social recognition and access to social rights for family carers as a way to support life in dignity, gender equality, and the fight against family poverty and social exclusion in Europe.  

The gender equality component of LTC is present through the document and is central to the Care Strategy. While the Recommendation includes measures to provide financial resources to informal carers, it clearly states that this should not deter participation in the labour market. Informal carers being for the large majority women, the gender aspect is central to any long-term care policies and will have to come out strongly in the National Action Plans including through actions to challenge the harmful gender stereotypes corroding the formal and informal care sectors.  

The proposed Recommendation notes that LTC systems must also cater for the support needs of persons with disabilities while clearly referencing the United Nation Convention on the Rights of Persons with Disabilities (UNCRPD), notably the right to independent living and inclusion in the community (art.19). The development of community-based services with a well-trained workforce is a central part of the realisation of these rights. The National Actions plans therefore must be compliant with the UNCRPD objectives and push forward the transition to independent living.  

The European Commission sets out an ambitious governance and monitoring system based on revised indicators, National Action Plans and with the support of newly appointed coordinators in each EU Member State. COFACE welcomes this ambition to share expertise at the European level but calls on the European Institutions to go a step further by formalising the cooperation with key EU stakeholders on the implementation of the LTC recommendation by setting up a High-Level Expert group on LTC bringing at the table civil society organisations, Member States coordinators and all relevant stakeholders.  

“We welcome the European Commission’s leadership and now call on the EU Member States to work on strong national action plans for long-term care systems that respect the needs and wishes of the persons cared for and supported but also of the persons providing this care whether they are families or professionals.”  

Chantal Bruno, COFACE Disability Platform co-president 

COFACE Families Europe now calls on all governments to swiftly adopt the Recommendations and follow up by developing strong national action plans in collaboration with all relevant stakeholders, covering all key dimensions in the European Care Strategy Recommendations and based on a multi-generational approach with a strong family support stream that acknowledges the interrelated well-being of persons with care and support needs and their families – particularly family carers-, and the professionals working with them.   

Family organisations in the COFACE network support this initiative and stand ready to share their knowledge on strengthening overall care and support systems to S.H.I.F.T. to the full inclusion of persons with disabilities and their families as well as other persons in need of assistance. This will require an efficient system with intergovernmental coordination at national and sub-national levels to ensure effective and lasting change.   

What is the European Care Strategy?  

• A Package of measures to address the deficiencies of the care system.
  
  
  • • A Communication – presenting the overall vision of the social care infrastructures of tomorrow and the actions that will be taken at the EU level to push for upward convergence while respecting competences at EU and national level. It highlights the need to consider care as a continuum that needs to be addressed from a lifecycle approach taking into consideration the rights and wellbeing of all actors: persons in need of care and support, family carers and care professionals.   
    • A Proposal for a Council Recommendation on Early Childhood Education and Care – presenting a revision of the Barcelona targets, with more focus placed on the quality of services and their accessibility.  The 2002 indicators are raised and new quality indicators are included, such as the number of hours a child attends ECEC and staff/child ratios. Clear links are made with the European Child Guarantee, the European Strategy for the Rights of Persons with Disabilities and the EU work-life balance directive.  
    • A Proposal for a Council Recommendation on Long Term Care - presenting a vision of long-term care that balances the needs of care users with recommendations on carers from family to professional services addressing the continuum of care. It recommends that Member States adopt National Action Plans to reform their care infrastructures to boost the transition to independent living and full inclusion in the community.   

• A Package set within a wider European Pillar of Social Rights, the European Care Strategy brings to the fore the topic of care as an essential component of social rights, as it contributes to the advancement of Gender Equality (Principle 2), Work-life balance (Principle 9), Child Care and Support to Children (Principle 11), Inclusion of People with Disabilities (Principle 17) and Long-term Care (Principle 18).   
• The Commission will monitor the implementation of the strategy through a mix of tools, explicitly linked to the European Pillar of Social Rights 2030 targets on poverty reduction and employment. 
• It puts forward the need to recognise family carers – and to accompany this social recognition with support measures which ensure access to resources, services and appropriate time arrangements allowing the conditions for an informed choice.   
• The Member States now have to adopt the two Recommendations in the EPSCO council and they are encouraged by the European Commission to put forward concrete action plans on the LTC reforms that will be monitored through the revised indicators of the EU Semester developed in consultation with the Social Protection Committee. 

 For more information, contact Camille Roux croux@coface-eu.org  

COFACE resources  

• EU Care Strategy: COFACE Families Europe Recommendations  
• Mind the gap: the EU Care Strategy must promote gender equality  
• COFACE POLICY BRIEF – Early childhood education and care: A tool for child education, reconciliation of work and family life, and a caring and inclusive economy  
• European Charter for Family Carers  
• S.H.I.F.T. – A guide to shift towards meaningful inclusion of persons with disabilities and their families   
• From Words to Actions: Shedding light on the S.H.I.F.T towards meaningful inclusion in Europe   
• Key Findings: Study session on gender inequalities in care and pay   
• Long-term care: The family dimension  
• Towards an economy which cares: COFACE Economic Principles  
• Child Compass 2030: Shaping a healthy society, environment and economy fit for children  
• Who Cares?: Study on the challenges and needs of family carers in Europe   
• COFACE Position Paper: Families on the Edge   

Going Further  

• Looking beyond COVID-19: Strengthening family support services across the OECD  
• Study on exploring the incidence and costs of informal long-term care in the EU  European Commission 
• Gender equality and long-term care at home, European Institute for Gender Equality 

The post Family Organisations welcome the European Care Strategy and call for swift adoption by EU Social Affairs Ministers      appeared first on COFACE Families Europe.

COFACE aims for 2020-2024

We are ‘COFACE Families Europe’.

We are an organisation that works
for the rights of all families in Europe
since 1958.

In short, we are called ‘COFACE’.

We wrote this booklet to talk about
our aims for 2020-2024.

There are 10 aims we ask the European Union
to make happen by 2024:

1. Recognise all forms of families
2. Recognise parents as equal
3. Make sure all children have a good and safe life
4. Support families of people with disabilities
5. Listen to the needs of families
6. Make access to internet possible for all people
7. Support families that are poor or left out
8. Support family carers
9. Respect the rights of all families
10. Make the Sustainable Development Goals happen

See the full booklet here: Our aims for 2020-2024

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What are easy-to-read texts?

Easy-to-read texts are designed to be understood by people with intellectual disabilities.

This is important so they can learn new things, make their own choices, know their rights and stand up for them. In other words, they empower them to take part in society.

To do so, easy-to-read texts respond to specific criteria related to structure, language and illustrations.

See also the European Pillar of Social Rights: now available in the “easy-to-read” format.

The post New Deal for Families of Today: Easy-to-read version appeared first on COFACE Families Europe.

Chantal Bruno, the COFACE Disability co-president, was interviewed by the CFHE (Conseil Français des Personnes Handicapées pour les affaires Européennes et internationales) to discuss our work for the rights of children and young people with disabilities in Europe.

• Can you introduce COFACE and the COFACE Disability strand?

COFACE Families Europe is a pluralistic network of civil society associations (NGOs) representing the interests of all families, without discrimination. It promotes at the European level policies of non-discrimination and equal opportunities between people and between family forms, and specifically supports policies aimed at equality between women and men. With 58 member organisations in 23 European countries, COFACE Families Europe represents over 25 million families in Europe. It is supported by the European Union Programme for Employment and Social Innovation (EaSI). Founded in 1998, COFACE “Disability-Plateform rights of people with disabilities, their families and carers families and carers”, aims to improve their representation and to support the recognition and exercise to support the recognition and exercise of their rights throughout life.

• How is COFACE mobilising around the new European issues, especially the European Strategy on the Rights of the Child?

Our mobilisation is based on the United Nations Conventions on the Rights of the Child and on the rights of persons with disabilities, which are framework documents for COFACE and COFACE Disability. Thus, all our work is directly linked to the principles of the two Conventions, applied in our work, in all areas that affect family life and the advocacy and of their rights. Like the European Commission, which worked with civil society organisations to consult directly with children to find out what they wanted to see in the Strategy, COFACE Families Europe also works on participation. To mark International Children’s Rights Day, for example, we are organising a webinar on family relations in the digital age, where children will be an integral part of the expert panel. Children’s rights in the digital age are also one of the main lines of action of the European Strategy. In terms of advocacy, COFACE and COFACE Disability are working with organisations specialising in children’s rights, bringing both the expertise of our members on family policies and ensuring that children with disabilities and their rights are represented in the discussions. The Strategy explicitly refers to the Convention on the Rights of Persons with Disabilities and we are working to ensure that all actions under the 6 priorities of the Strategy (political and democratic participation, socio-economic inclusion, health and education, combating violence against children, and child protection, child-friendly justice, digital and information society, global dimension) include children with disabilities. Unfortunately, the Council of the European Union failed to agree on the adoption of the Strategy at the Member State level. This was a shock and a disappointment, expressed in the publication of a joint statement with 17 other NGOs. We will of course continue to work to ensure the dissemination of this text and its implementation for all children. 

• What is the Child Guarantee? What opportunities does it provide for children with disabilities?

 The Council adopted the European Child Guarantee with the aim of combating child poverty and social exclusion and promoting equal opportunities. The aim is to especially take into account children from disadvantaged, homeless, disabled, migrant or racial or ethnic minority backgrounds who need specific responses “in order to guarantee them a better future in their adult lives” (Ana Mendes Godinho, Portuguese Minister of Labour, Solidarity and Social Security). For children with disabilities among the other three, educational poverty and the risk of social exclusion were already known and significant problems. Their various difficulties have been greatly accentuated and made visible by the health crisis which has broken down inequalities (digital inaccessibility, no access to care, etc.). 

The opportunities for children with disabilities are to be found in the findings and recommendations of the guarantee, which identify a number of actions through which the inclusion of children with disabilities (who have the same needs as all children: eating, learning, moving around, etc.) among the others is finally achieved. But also, an awareness of different obstacles and the need to provide adapted, personalised (specific) responses to remove these obstacles and allow all children to exercise their rights (as set out in international conventions). Among the opportunities, we note the consideration of families (and therefore also carers) which should be supported so that they can remain, become or become again a favourable environment for the development of children.

 The adoption of the Child Guarantee is the product of a long advocacy work in which COFACE has actively participated in (See the press release for the publication of the Guarantee by COFACE and the EU Alliance for Investing in Children). Unlike the Strategy, the Guarantee was adopted by the Member States unanimously in June, and we issued a press release on that occasion. We have been carrying out constant and transnational analysis and reflection on child policies and family policies, which must work together and reinforce each other. 

This is what we call the multi-generational approach, which allows us to address, among other things, the intergenerational cycle of poverty and social exclusion (one of the objectives of the guarantee). It is this multi-generational vision that we express in our Child Compass, in which we set out the different policy areas to work on in order to end child poverty, which is not just a social issue! We are also actively involved in the EU Alliance for Investing in Children working group that has been leading the advocacy work on the child guarantee, bringing together dozens of NGOs working on different child-related sectors. In this group, we represent the family perspective with which we stress, among other things, the importance for all families to have access to sufficient services, resources and free time to be able to participate fully in society.

 Children with disabilities are one of the groups for which the guarantee advises states to work at the European level. However, for its transposition at the national level, each state is free to choose the target groups it wants to work on. We, therefore, work with our members to support them in their advocacy at the national level to ensure that children with disabilities are identified as a target group in national action plans. The Guarantee also takes an inclusive approach to access to services, including education and school and after-school activities. We are also working on the National Action Plans in collaboration with our Alliance colleagues to ensure that they present comprehensive and adequate solutions to end child and family poverty.

The post Get to know more about COFACE’s work for the rights of children with disabilities appeared first on COFACE Families Europe.

In December 2021, COFACE Families Europe released the S.H.I.F.T. from word to actions: shedding the light on the S.H.I.F.T. towards meaningful inclusion in Europe, where we highlighted 45 practices for the inclusion of persons with disabilities aligned with the 45 actions developed in our S.H.I.F.T. guide.

Through the public survey we launched to collect practices, we have been amazed by the variety of initiatives that are already implementing the S.H.I.F.T. towards the meaningful inclusion of persons with disabilities and their families in Europe.

Over the last months, we have received news about a few practices that we are happy to share with you, hoping that they will inspire you as they have inspired us.

The city of Arras (France) has inaugurated their change room in the city centre. (S.H.I.F.T. report p.20)

The city of Arras in the north of France opened the first public changing room in France accessible to persons with disability France in late 2021. Changing rooms greatly improve the accessibility of public spaces for person with disabilities. They preserve dignity by giving privacy for persons who need assistance going to the facilities and for whom accessible toilets are not enough. It is a useful investment for any city moving towards inclusivity. The changing room in Arras has already brought a group of tourists with multiple disabilities who came to tour the city!

The changing room in Arras is the direct result of the advocacy action of Sonia, the mother of Liam who presented the project to the city for participatory financing and won the bid.  It is a great and inspiring example of family carer advocacy and it already had positive ripple effects.

Since then, the city of Nancy has also inaugurated their changing room and following the example of Sonia in Arras, a request has been put forward by a mother for the city of Lille to finance their own changing rooms.

The Pika Centre in Ljubljana. (S.H.I.F.T. report p.35)

With the COVID Restrictions lowering, COFACE Families Europe had the opportunity to organise a meeting with members organisation safely in Ljubljana. It was the occasion to meet up with the great team of the Pika Centre and to learn a bit more about their program to support children with disabilities, their families, and the professionals working with them. Through a wide range of services, including training courses for professionals from the health and education sectors (on a wide range of topics including Early Childhood Intervention), seminars and workshops, phone and email counseling to families, teachers, and other professionals working with children with special needs, they have been providing support since 2013 to move towards inclusion. The team also contributes to the field of research and to the diffusion of information through the publication of books and leaflets for various actors. The centre is the result of the advocacy of Branka D. Jurišić, who successfully advocated the city for the necessity of such a resource centre, she was joined in her effort by Matej Rovšek who is now the director of the centre.

Thank you to the entire Pika team for your warm welcome!

Both examples prove that when motivation, and belief that inclusion is the way forward, meet responsive public authorities who are willing to learn and to listen to persons with disabilities and their families, great results can be achieved!

The post From Words to Actions: S.H.I.F.T. Inclusion in practice for persons with disabilities appeared first on COFACE Families Europe.

Media release for International Day of Persons with Disabilities
Brussels, 3rd December 2021

On this International day of persons with disabilities, the COFACE Disability platform for the rights of persons with disabilities and their families presents its new report shedding light on existing practices across Europe to boost the shift towards fully inclusive societies. This snapshot of 45 practices, matching the content of the S.H.I.F.T. guide, highlights the transition towards meaningful inclusion as a whole-family, whole-society process and invites everyone to join the #BeTheSHIFT movement.

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For this International day of persons with disabilities, COFACE’s Disability Platform has selected 45 initiatives reflecting the S.H.I.F.T. principles, reflected by the words: Support, Human rights, Independence, Families, societal Transition.  These practices were selected to match the 45 actions of the S.H.I.F.T. guide for inclusion of persons with disabilities and their families. Implemented in 20+ European countries by a wide range of practitioners, some of the practices already have a global reach, and all of them have the potential to inspire every one, everywhere to join the movement and #BeTheSHIFT.

After the adoption of the S.H.I.F.T. guide by COFACE Families Europe in 2019, the COFACE Disability platform decided to organise a reality-check by launching a public consultation to collect examples of S.H.I.F.T. actions currently underway in different countries. Over the last months, we have collected and analysed practices, comparing them with the actions and tools in the S.H.I.F.T. guide. We are delighted to present the result of this work.

The report contains 45 individual factsheets presenting a snapshot description of the practice as well as an explanation of how the practice contributes to building inclusive societies. All factsheets have been thought to reflect the political and societal relevance of the S.H.I.F.T. movement. For the policy side, we have matched all the practices with the most relevant articles of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and with the relevant areas of action put forward by the European Commission in the European Strategy for the Rights of Persons with Disabilities. Finally, for each practice, we included a short tip section, addressed to everyone wanting to further explore the content of the S.H.I.F.T. action and #BeTheSHIFT.

COFACE Disability President, Chantal Bruno: “As witnessed by the COFACE Disability Platform for the rights of persons with disabilities and their families, too many forms of discrimination persist here and there, including against people with disabilities or people with an illnesse, older persons, their families and their carers. Nonetheless, at the same time, movements towards inclusion are emerging. There are places adapting to the differences of all people, specific answers are brought to those who need them. Places exist where rights and freedoms are conjugated in the present, for all. It is important to make them known; they can be a source of inspiration.”

The natural conclusion after going through this collection of practices is that the S.H.I.F.T. is happening all over Europe. These 45 factsheets are 45 additional arguments to strengthen COFACE’s work to achieve the meaningful inclusion of persons with disabilities and their families, grounding our advocacy in concrete practices. They are the real-life examples showing that the actions we present in our S.H.I.F.T guide are not wishful thinking but are implementable, and this is only the beginning.

COFACE Families Europe President, Annemie Drieskens: “What we found exceeded our expectations! We have been inspired by a wide range of initiatives by a colourful mix of practitioners who all should be applauded for their efforts to promote inclusion. Our report shines a light on the shift that is happening and paves the way towards meaningful inclusion. We hope to encourage and inspire many people to join COFACE’s work and #BetheShift.”

Easy to read version

We all have the same rights.

People with disabilities and their families have the same rights as other people.

People with disabilities and their families must live with others.

This is not done everywhere.

But there are places where people with disabilities live with others.

S.H.I.F.T. shows examples.

S.H.I.F.T. is like an easy-to-read-and-understand song to say the important words:

Support: means to help someone who needs help.

Human Rights:  means that all people are free and equal throughout their lives.

Independence:  means that the person does things alone. And also when they decide alone.

Families:  means that the families of people with disabilities may have needs, questions.

Transition: means when life or society changes.

• A global network centralising information on available assistive technology products.
• Accessible technology with built‑in features that work the way you do.
• Boosting representation of persons with disabilities in advertising.
• Creating inclusive and diverse toys which represent children with disabilities.

• Training manuals on sexual and reproductive health and rights for young people with learning disabilities. Europe
• European Union Strategy for the rights of persons with disabilities 2021-2030.

Download the S.H.I.F.T. REPORT

(Click to download)

The post New report shedding light on the S.H.I.F.T. towards meaningful inclusion in Europe appeared first on COFACE Families Europe.