Statement of the European Network on Independent Living
on the European Care Strategy
The full statement can be downloaded here.
The European Network on Independent Living – ENIL takes notice of the European Commission’s Communication on the European Care Strategy (COM(2022) 440 final), published on 7 September 2022.
According to the document, the EU Care Strategy was developed to implement the European Pillar of Social Rights. The new strategy concerns children, older people, but also disabled people, as well as those providing ‘care’ or support. It shows commitment to improving the conditions of workers in the childcare and social sector, as well as the situation of informal workers, and recommends to member states to conclude collective bargaining agreements. The document also highlights the importance of ensuring sustainable financing of social services. To this end, the Commission recommends to member states to promote public and private investment in this area. We welcome these recommendations.
ENIL’s concerns about the European Care Strategy
In a number of key areas, ENIL sees a strong need for modifications, to ensure access to living independently and being included in the community for children and their families, disabled adults and older people.
1. Disabled people require support, in line with the UNCRPD
The European Union is state party to the United Nations Convention on the Rights of Persons with Disabilities (‘UNCRPD’). For this reason, the implementation of the UNCRPD should underpin all EU activities which concern disabled people. The Care Strategy contains no call on the member states to fully implement the UNCRPD, including the General Comments and the recommendations by the Committee on the Rights of Persons with Disabilities (CRPD). The document addresses disabled people solely as needing ‘care’. This is, for example, reflected in the statement that “for many Persons with Disabilities insufficient care services…undermine the rights to Independent Living”. For disabled people, the term “care” is synonymous with the medical model of disability, which turns disabled people into passive recipients of care, dependent on the good will and charity. Principle 17 on of the European Pillar of Social Rights, article 19 of the UNCRPD, General Comment no 5 and the newly adopted Guidelines on Deinstitutionalisation, including in Emergencies clearly state that disabled people have a right to support services. Their implementation requires a paradigm shift in policy, law and attitudes – something that is not reflected in the new Care Strategy.
The European Care Strategy and the Council recommendations should contain a call on member states to fully implement the UNCRPD, the General Comments and all other recommendations adopted by the CRPD Committee. The Council recommendations on long-term care and early childhood education and care should clearly state that disabled people have a right to community-based support, in line with the UNCRPD.
2. There is a need to highlight the importance of Personal Assistance
The European Care Strategy mentions Personal Assistance and home care services as alternatives to institutional settings. These two forms of community-based support services can be key to avoid institutionalisation.
To avoid the development of services that curtail, rather than promote, Independent Living, clear definitions are required, of both Personal Assistance and home care. In addition, it is important to highlight that according to art. 19 UNCRPD, General Comment no 5 and the Guidelines on Deinstitutionalisation, including in Emergencies, every disabled person in need has a right to Personal Assistance.
A personal assistant is a person providing one-on-one support to a disabled person in all areas of life, as needed, for as much time per day, as required. In order for Personal Assistance to be aligned with the UNCRPD, the disabled person must have a choice to decide who delivers the assistance, what is done, when, where and how. Those in need should have access to supported decision making.
Home care services should follow a direct employer model where the disabled person chooses and/or employs their carers. Neither Personal Assistance nor home can be delivered in residential care settings.
The proposed Council recommendations should contain clear definitions of Personal Assistance and home care services, in order to promote Independent Living. The recommendations should clearly state the right to Personal Assistance.
3. The EU must accelerate deinstitutionalisation and prohibit investments into institutions
The European Care Strategy and the draft Council recommendation on long-term care state that community-based services are preferable to residential facilities. At the same time, it embraces “innovate care settings, such as shared housing, where people with long-term care needs share domestic support and care services…supporting independent living.”
According to article 19 UNCRPD, the General Comment no 5 and the Guidelines on Deinstitutionalisation, including in Emergencies, “the obligatory sharing of assistants with others” is a defining element of an institution. Moreover, living independently and being included in the community refer to life settings outside residential institutions of all kinds. The European Union and all Member States are required to close down all types of institutions for children, disabled and older people as a matter of priority. New types of institutions, such as group homes, family-type homes for children, sheltered or protected living or “homes” where the same service provider packages housing and support together are explicitly prohibited under the UNCRPD. Disabled children have the inalienable right to family. In the context of children, any placement that is not family based is a form of institutionalisation. Furthermore, the General Comment no. 5 and the Guidelines on Deinstitutionalisation prohibit all investments into institutions and call for the redirection of all funds into the creation of community-based support services.
While recognising the need for investment into community-based ‘care’, the Care Strategy contains no mention of the increasing number of institutions still being built across the European Union, including with EU funds, and the need to prohibit such investments. There is no commitment to ensuring that public and private funds support exclusively supports and services in the community. Related to this is the complete absence of reference to the number of children, disabled and older people still living in institutions and the human rights violations committed by the continued segregation of these groups. Even when referring to the impact of COVID-19, there is no reference to the huge numbers of deaths in institutional care settings.
The European Care Strategy and the planned Council recommendations should contain a clear call for the elimination of all forms of institutions and segregation of children, disabled people and older people, and call on Member State to redirect funding into the development of community-based services. Personal assistance, home care services, peer support or access to health care, housing, education and employment are examples of key community-based and mainstream services that require investment. The proposed documents should acknowledge the harm of institutions and contain a commitment to deinstitutionalisation, in line with the Guidelines on Deinstitutionalisation.
4. Nothing about us, without us
The European Care Strategy refers, among other, to disabled people, yet contains no reference to the need to involve disabled people and their representative organisations in the development of policies and laws that concern them. The Care Strategy was not developed in consultation with disabled people, although they will be directly affected by it. Furthermore, there is no recognition of the importance of choice and control for those requiring support services, even though this is the only way to ensure that the services correspond to their individual needs and preferences.
The European Care Strategy and the planned Council recommendations must commit to full involvement of disabled people and their representative organisations, as well as other rights holders, and call on the Member States to do the same. Any resulting actions must respect the principle of choice and control, as means of ensuring full respect of the UNCRPD, the EU Fundamental Rights Charter and the Pillar of Social Rights.
ENIL Policy Coordinator, email@example.com
ENIL Brussels Office vzw/asbl
Mundo J – 6th Floor, Rue de l’Industrie 10, 1000 Brussels
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