EN Official Journal of the European Union C 332/1

Opinion of the European Economic and Social Committee on long-term social care and deinstitutionalisation

(exploratory opinion)

(2015/C 332/01)

Rapporteur: Gunta ANČA Co-rapporteur: José Isaías RODRÍGUEZ GARCÍA-CARO

In a letter dated 25 September 2014, and in accordance with Article 304 of the TFEU, Mr Rihards Kozlovskis, Acting Minister for Foreign Affairs and Minister for the Interior of the Republic of Latvia, asked the European Economic and Social Committee, on behalf of the Latvian Presidency, to draw up an exploratory opinion on:

long-term social care and deinstitutionalisation.

The Section for Employment, Social Affairs and Citizenship, which was responsible for the Committee’s work on the subject, adopted its opinion on 7 May 2015.

At its 508th plenary session, held on 27 and 28 May 2015 (meeting of 27 May), the European Economic and Social Committee adopted the following opinion by 139 votes to 1 with 3 abstentions.

1. Conclusions and recommendations

The EESC:

1.1. Calls for awareness of the Situation of people living in institutions to be raised, through consistent and disaggregated data, and for human rights indicators to be established;

1.2. calls on Member States to put anti-discrimination measures in place and to promote the right of people with disabilities to participate fully in society and the economy, as part of National Reform Programmes (NRPs);

1.3. concludes that austerity measures have reduced the budgets of local and regional authorities with direct consequences on the availability of social services. This has caused a trend towards institutionalisation in some Member States;

1.4. recommends that Member States use European Structural and Investment Funds to promote the transition from institutional to community-based care, to develop social and health services and to train support services staff;

1.5. recommends that Member States reform long-term care on the basis of cost-effectiveness analysis, adopting a long-term approach which includes investing in people and services instead of cutting financial resources;

1.6. highlights that ‘deinstitutionalisation’ is a process which requires a long-term political strategy and the allocation of adequate financial resources to develop alternative support services in the community;

1.7. urges the Member States to recognise the legal capacity of men and women with disabilities on an equal basis with others, in all aspects of life, and to provide supported decision making when needed (1);

1.8. recommends that high quality, community-based services be developed as a key step in the deinstitutionalisation process (2). It is dangerous to close institutions without giving people alternative services;

1.9. considers that, when care is provided at home, the necessary development of professional services at affordable prices shall be ensured;

1.10. recommends that professionals throughout Europe be trained to work in community-based services and that they be informed about the deinstitutionalisation process;

1.11. recommends that community-based services be available locally and that they be affordable and accessible for all;

1.12. stresses the importance of access to employment in order for people leaving institutions to be able to fully participate in society. Specialised employment services and vocational education and training should be accessible for those who need them without discrimination;

1.13. recommends that partnerships be built between all stakeholders involved in the deinstitutionalisation process;

1.14. highlights that different user groups have different needs and that specific responses must be developed in cooperation with all the relevant stakeholders, including: users and their representative organisations, families, service providers, the economic sectors involved and public authorities;

1.15. urges the European Commission to adopt an European Quality Framework for community-based services and reiterates the urgent need for binding standards to ensure the highest levels of quality;

1.16. urges the Member States to establish independent and efficient inspection and monitoring services, to ensure compliance with regulatory and quality standards for care services;

1.17. recommends tackling negative stereotypes and raising awareness in schools and in society, through inclusive education and media campaigns.

2. Introduction

2.1. Deinstitutionalisation processes and the respect for human rights in Europe developed in different ways over most of the last century. It is therefore difficult to obtain comparable data from different countries.

2.2. The EESC believes that in our changing society, it is important to analyse the situation of people in need of social care and a high level of support across the EU, so as to develop appropriate responses and exchange good practices.

2.3. Therefore, the EESC:

2.3.1. notes that more than one million children and adults with disabilities live in institutions across Europe (3);

2.3.2. deems an ‘institution’ to mean any residential care centre where residents are isolated from the broader community and/or compelled to live together. Such residents do not have sufficient control over their lives or over decisions which affect them, and the requirements of the organisation itself tend to take precedence over residents’ individual needs (4);

2.3.3. points out that high quality care services in the local community result in better outcomes in terms of quality of life than institutional care does, leading to social integration and reducing the risk of segregation (5);

2.3.4. bans any form of discrimination and abuse that men, women and children with and without disabilities; people in need of a high level of support or those with psychosocial disabilities may experience in institutions and when receiving care services;

2.3.5. refers to the recommendations set out in previous EESC opinions (6);

2.3.6. draws attention to the obligations incumbent on the EU and its Member States — deriving from the UN Convention on the Rights of Persons with Disabilities (UNCRPD) (7) — to respect people’s dignity, liberty and right to live independently, to choose where and with whom they do so and to have access to support services, including personal assistance, in the community;

2.3.7. points out that, in line with the UN Convention on the Rights of the Child (CRC), ‘for the full and harmonious development of his or her personality’ a child should ‘grow up in a family environment, in an atmosphere of happiness, love and understanding’. Parents have the primary responsibility with regard to raising their children, and it is the responsibility of the State to support parents — especially the most deprived — with adequate social protection instruments. Children have the right to protection from harm and abuse. Where their family cannot provide the care they need, despite the provision of adequate support by the State, children have the right to substitute family care.

2.3.8. reaffirms that people with disabilities, and especially those with intellectual disabilities, have the right to recognition everywhere as people in the eyes of the law.

3. Transition from institutional to community-based care

The EESC:

3.1. welcomes the fact that many countries are reforming the way they provide care and support for children and adults, by replacing some or all long-stay residential institutions with family and community-based services (8);

3.2. asks for the deinstitutionalisation process to be carried out in a way that respects the rights of user groups, minimises the risk of harm and ensures positive outcomes for all individuals involved. New care and support systems must respect the rights, dignity, needs and wishes of each individual and their family;

3.3. believes that every individual has the right to choose the place and way in which they wish to live.

4. Deinstitutionalisation for different interest groups

4.1. The EESC recognises that the care needs of children, people with disabilities — including people with psychosocial disabilities — and the elderly are very different. Therefore, the process of deinstitutionalising long-term care should take account of the specific needs of each group of users.

4.2. Community-based care, including professional care and the care received within the family and social environment, offers added value that is missing in residential institutions.

4.3. The institutional system should therefore be adapted to supplement community-based social and healthcare services when these are not available, and during the transition period.

4.4. Independent living does not mean people have to live in isolation. Instead it means that they have a choice of specialised services and accessible mainstream services in the community that they have chosen to live in.

4.5. Deinstitutionalisation is about creating the right services, but also about creating the right environment in the community. It is necessary to prepare the general public for this transition, to raise awareness and to fight stigma. Otherwise, rather than deinstitutionalisation, the result will be reinstitutionalisation, by creating ‘ghettos’ of people with psychosocial disabilities who live within society, but still in isolation due to negative attitudes. The media play a key role in this respect.

4.6. The EESC notes the differences between EU Member States, not least with regard to the definition of long-term care. These differences may also concern the types of care provided and the services involved. Similarly, significant differences exist within Member States between regions and municipalities, particularly between urban and rural settings (9). The EESC believes that this should not justify the lack of progress made by a Member State, which has its own particular characteristics, and promotes a gradual shift towards community-based services.

4.7. In a previous exploratory opinion (10), the EESC recommended evaluating telecare and ambient assisted living, and creating a comprehensive, decentralised structure near to where people live, in direct contact with older people. We would reiterate this recommendation, and support an appropriate process of deinstitutionalisation for the elderly, children, people with disabilities of any age and people with psychosocial disabilities (11).

4.8. These user groups include individuals whose ability to take decisions may be reduced or lacking due to their age, disability or dependency. The EESC therefore urges Member States to provide maximum protection for such people, within a gradual and controlled process of deinstitutionalisation, so that their rights are respected at all times and they are provided with the best possible care in the community, including supported decision making.

4.9. The EESC is attentive to the impact that a transition from institutions to community-based care may have on the workers involved. All authorities and stakeholders involved in the process must work together to ensure that the deinstitutionalisation process has a beneficial and gradual effect on carers. Decent working conditions should always be respected.

4.10. The alternative to institutionalisation is not service delivered at home but service in the community, and therefore investment in service infrastructure must be guaranteed.

4.11. The EESC welcomes good examples, e.g. care leave, part-time care leave and the recognition of insurance for informal caregivers (12). It calls on the Commission and Member States to encourage the exchange of good practice.

4.12. The EESC recognises the importance of caregivers. Informal carers, acting on a voluntary basis, strive to combine care responsibilities with their lives. This can lead to ‘carer’s syndrome’, whereby the main carer becomes physically and psychologically exhausted. The EU must ensure that: reconciliation policies and responsibility for care are based on equality for all and that informal care duties are equally and fairly shared (13); that the fundamental rights of caregivers are upheld; that informal and family care is recognised and supported; and that the role that volunteers play in providing formal and informal care is recognised and supported (14).

4.13. The EESC recognises that many of the vulnerable groups that tend to experience institutional care are over-represented in the homeless population. The EESC therefore urges Member States to develop deinstitutionalisation strategies and programmes that take full account of homelessness and the need to provide community-based services in order to both prevent and respond to homelessness.

4.14. Developing and professionalising domestic work is strategically important for achieving equality in the workplace, because it is mainly women who carry out such work and who need childcare services, care for the elderly services and home-cleaning services, in order to reach an equal footing with men in their career. These services benefit not only individuals, but also society as a whole. They create new jobs, meet the needs of an ageing society and help people balance their private and professional lives. They improve quality of life and social inclusion and make it easier for the elderly to remain in their own homes (15).

4.15. The EESC recognises the need for training on deinstitutionalisation for professionals throughout Europe. For example, the new generation of psychiatrists will need to be trained to ensure that they will practice in compliance with the UN CRPD.

4.16. The EESC is concerned that people are, in some cases, sent to institutions without a consultation process or clear procedures being followed. It recognises the importance of a formal assessment of people’s needs for long-term care. This process must respect people’s dignity and result in the development of individualised services;

5. Impact of the financial crisis on social services

5.1. The EESC is aware that the provision of long-term care to those user groups who require it is one of the greatest social and economic challenges facing the European Union, especially in a time of economic crisis as is currently the case.

5.2. The Communication on Social Investment (16) makes it clear that the economic crisis has threatened our social protection systems as unemployment has risen, tax revenues have fallen and the number of people in need of benefits has grown. Against this backdrop, the EESC agrees with the Commission on the need to support Member States in devising long-term care strategies that minimise the impact of the economic crisis.

5.3. In its opinion (17) on that communication, the EESC argued that social investment for growth and cohesion should also be put towards reinforcing social services. This could also support the creation of jobs in the services sector and the development of new services in the community.

5.4. The economic crisis had negative effects on the ability of people with disabilities to live independently, and on families and vulnerable groups who were already at higher risk of poverty and social exclusion.

5.5. The Social Investment Package (SIP) will tackle challenges relating to the economic crisis and demographic changes (18).

5.6. The EESC is convinced that the crisis has led to a major retreat in the recognition of social rights, as the budgets for these policies have been cut. The Committee therefore urges the Council, the Commission and the Member States to ensure that social investment is channelled toward social protection policies, to — at least — restore the levels that were in place prior to the economic crisis (19).

5.7. The EESC underlines that facing up to the needs resulting from the increase in life expectancy requires tackling difficult questions of intergenerational justice and solidarity. The ultimate objective must be to make it possible for old and very old people in Europe to live their lives safely and with dignity, even if they are dependent on care, while at the same time ensuring that this does not impose unbearable burdens on the younger generations (20).

5.8. While the differences across the EU in terms of long-term institutional or community care were already apparent, the crisis has aggravated the already wide economic and social disparities within the EU. It has highlighted differences in competitiveness and social cohesion, increasing the trend towards polarisation of growth and development, with obvious constraints in terms of fair distribution of income, wealth and well-being, between Member States and regions (21).

6. Use of EU funds for long-term social services and deinstitutionalisation

The EESC:

6.1. regrets the fact that European Structural Funds in the last programming period were used for segregating institutions instead of on community-based care;

6.2. welcomes the new 2014-2020 European Structural and Investment Funds (ESIF) regulations that promote a transition from institutional to community-based care funding, counting on the European Regional Development Fund to improve social and health infrastructures;

6.3. suggests that a multi-fund approach could accelerate the transition towards community-based care, including using the European Social Fund for soft measures such as the training of support services staff and the creation of new social services;

6.4. welcomes the ex ante thematic conditionality contained in the Common Provisions Regulation governing the ESIF, relating to the fight against poverty and social exclusion, which makes putting in place a deinstitutionalisation strategy a requirement for Member States;

6.5. recommends that Member States use European Structural and Investment Funds for the promotion of the transition from institutional to community-based care, to develop social and health services and to train staff in the support services;

6.6. finds that the Instrument for Pre-accession Assistance and the European development Fund should be used to support the right to live in the community and to grow up in a family environment;

6.7. understands that the transition from institutional to community-based services is complex. It therefore calls on the Commission and the Member States to develop a communication and political guidance to promote deinstitutionalisation even and especially in times of economic crisis.

7. Quality community-based services

The EESC:

7.1. urges the European Commission to adopt an European Quality Framework for community-based services and reiterates the urgent need for strict, binding standards to ensure the highest levels of quality;

7.2. concludes that services must be available in the community, including in remote and rural areas, and that individuals must receive adequate individual budgets to freely choose the service they need;

7.3. believes that community-based services should be developed in close cooperation with users and their representative organisations and that quality should be defined by them in cooperation with other relevant stakeholders, including service providers, public authorities and trade unions;

7.4. urges the Member States to establish independent and efficient inspection and monitoring services to ensure compliance with regulatory and quality standards for both community-based and institutional services;

7.5. recommends that community-based services be available locally and that they be affordable and accessible for all;

7.6. considers that these services must be subject to authorisation from the appropriate authorities, and be accredited by certification bodies;

7.7. assistive technologies and technical aids are central to community living for people with disabilities, including children and older people. These technologies are most effective when they are in accordance with the preferences of the user and respect privacy.

Brussels, 27 May 2015. The President of the European Economic and Social Committee Henri MALOSSE

(1) As laid down in Article 12 of the UN Convention on the Rights of Persons with Disabilities.

(2) This also applies to the closure of psychiatric detention institutions: real alternatives must be in place.

(3) Children and adults with disabilities (including people with mental health problems). This includes the EU and Turkey. Source: Mansell, J., Knapp, M., Beadle-Brown, J. and Beecham, J. (2007): Deinstitutionalisation and community living — outcomes and costs: report of a European Study. Volume 2: Main Report Canterbury: Tizard Centre, University of Kent (subsequently ‘the DECLOC Report’).

(4) Report — Ad Hoc Expert Group on the Transition from Institutional to Community-based Care http://ec.europa.eu/social/BlobServlet?docId=4017&langId=en

(5) The Common European Guidelines on the transition from institutional to community-based care (www.deinstitutionalisationguide.eu).

(6) OJ C 204, 9.8.2008, p. 103; OJ C 181, 21.6.2012, p. 2; OJ C 44, 15.2.2013, p. 28.

(7) see http://www.un.org/disabilities/convention/conventionfull.shtml

(8) Some examples of long-term care can be found in an Eurobarometer on health and long-term care (http://ec.europa.eu/public_opinion/archives/ebs/ebs_283_en.pdf). Additional good deinstitutionalisation practices can be found in ‘The Common European Guidelines on the transition from institutional to community-based care’ (www.deinstitutionalisationguide.eu).

(9) Long-term care in the European Union. ISBN 978-92-79-09573-3. Luxembourg: Publications Office of the European Union.

(10) OJ C 44, 11.2.2011, p. 10.

(11) Idem.

(12) Appropriate legislation exists in Austria. Examples:

Care leave and part-time care leave: In order to ensure a better balance between work and care, since 1 January 2014, workers have had the opportunity to agree care leave (with the total elimination of their salary) or part-time care leave (with a partial elimination of their salary) for a period of one to three months. During this time, they have the legal right to a care allowance, to protection against motivated dismissal and to social insurance cover (non-contributory health and pension insurance). The care leave allowance is equal to potential unemployment benefit. The aim of this care leave or part-time care leave is to allow the affected workers to (re-)organise their care arrangements, particularly in the event of a sudden need to care for a close relative or to relieve a caregiver for a certain period of time.

Pension insurance for relatives working as caregivers: For caregivers who care for a close family member using all or a considerable part of their working hours, the following options are available to acquire non-contributory pension insurance rights: continuing insurance as part of the pension insurance; personal insurance as part of the pension insurance; Continuing or personal insurance as part of the health insurance. The contributions to the insurance are taken over by the federal government, which means that there are therefore no costs for the relatives working as caregivers.

(13) Between men and women and between generations.

(14) Social Platform recommendations on care: http://www.socialplatform.org/wp-content/uploads/2013/03/20121217_SocialPlatform_Recommendations_on_CARE_EN1.pdf

(15) OJ C 12, 15.1.2015, p. 16.

(16) COM(2013) 83 final.

(17) OJ C 271, 19.9.2013, p. 91.

(18) It is intended to benefit children and young people, people with disabilities, homeless people and older people, among others. The SIP objectives are to: ensure that social protection systems respond to people’s needs; achieve simplified and better targeted social policies and upgrade active inclusion strategies in Member States. (Toolkit on the Use of European Union Funds for the Transition from Institutional to Community-Based Care — https://deinstitutionalisationdotcom.files.wordpress.com/2015/03/annex-1-en-orig.pdf).

(19) OJ C 170, 5.6.2014, p. 23 and OJ C 226, 16.7.2014, p. 21.

(20) OJ C 204, 9.8.2008, p. 103.

(21) OJ C 12, 15.1.2015, p. 105.