Transition to community-based care: the role of the EU
Hundreds of thousands of children, persons with disabilities, persons with mental health problems, homeless persons and older people across Europe continue to live in long-stay institutions where they face lives of social exclusion, poverty and labour market exclusion. In order to promote social inclusion of people with support needs in line with the targets set by the Europe 2020 strategy, countries must move away from the institutional model of care towards a system of person-centred community-based care and support. The transition process is complex to manage and politically sensitive. In the past EU funds have been invested in bad practices to refurbish or build residential institutions, thus reinforcing social exclusion. External expert guidance and support is therefore urgently needed in many EU Member States and candidate countries to promote good social investment in quality and sustainable community-based services.
The Social Investment Package and the new the ESIF 2014-20 give renewed impetus to Member States to develop more effective and efficient social protection systems. Investment in the transition to personalised community-based services is an investment in human potential and social inclusion. The European Semester, the social OMC and the ESIF processes provide opportunities for structured policy monitoring on this issue.
Terminology
Community Living
The concept of ‘Community Living’ consists in guaranteeing that disabled people can benefit from the same opportunities as each and everyone to choose the life they intend for themselves. It may be that some people will require assistance to be able to exercise this right completely, nonetheless the objective still remains to put into place all the necessary solutions for every disabled person to be able to fully participate in society. Adequate alternatives will allow each individual to develop their potential and to be recognised for the human and social capital they represent.
Institution
Rather than defining an institution by size, i.e. the number of residents, the Ad Hoc Report referred to ‘institutional culture’. It defines ‘an institution’ as any residential care where:
• residents are isolated from the broader community and/or compelled to live together;
• residents do not have sufficient control over their lives and over decisions which affect them; and
• the requirements of the organisation itself tend to take precedence over the residents’ individualised needs.
Institution for persons with mental health problems: Residential settings for people with mental health problems tend to have a predominantly medical character. These are often psychiatric hospitals or psychiatric units in general hospitals run by medical personnel. The basis of admission is a psychiatric diagnosis and the treatment is also medical, conducted by psychiatrists and other medical personnel. In addition, mental health institutions are often financed by health authorities or are being run under health budgets and not social services. There should be a clear distinction between psychiatric treatment as a form of healthcare service provision, and institutionalisation as a form of social treatment towards or against persons with mental health problems. One of the main reasons for institutionalisation is the lack of social services in the community, leading to discrimination and social exclusion of people with mental health problems.
Institutions for children: There is no definition of ‘institutions’ in the UN Guidelines for the Alternative Care of Children; in the text of those Guidelines, they are equated with ’large residential facilities’.
Based on the UN Guidelines and in the absence of a universally accepted definition, Eurochild suggests defining institutions for children “as (often large) residential settings that are not built around the needs of the child nor close to a family situation, and display the characteristics typical of institutional culture (depersonalisation, rigidity of routine, block treatment, social distance, dependence, lack of accountability, etc.)”. An organised routine, an impersonal structure and a high child/care-giver ratio are additional characteristics mentioned.
There are different types of children’s institutions, including ‘infant homes’, usually accommodating toddlers and young children up to the age of four, ‘children’s homes’ and ‘internats’. Institutions for children are also referred to as ‘orphanages’, despite the fact that the majority of children they accommodate are not orphans.
Deinstitutionalisation
Wherever possible, avoid using the term ‘deinstitutionalisation’, since it is often understood as simply the closure of institutions. In places where the term is used, it refers to the process of developing a range of services in the community, including prevention, in order to eliminate the need for institutional care.
UNICEF defines deinstitutionalisation as “the full process of planning transformation, downsizing and/or closure of residential institutions, while establishing a diversity of other child care services regulated by rights-based and outcomes-oriented standards.”
Community-based services
In the Guidelines, the term ‘community-based services’, or ‘community-based care’, refers to the spectrum of services that enable individuals to live in the community and, in the case of children, to grow up in a family environment as opposed to an institution. It encompasses mainstream services, such as housing, healthcare, education, employment, culture and leisure, which should be accessible to everyone regardless of the nature of their impairment or the required level of support.
It also refers to specialised services, such as personal assistance for persons with disabilities, respite care and others. In addition, the term includes family-based and family-like care for children, including substitute family care and preventative measures for early intervention and family support.
Alternative Care
‘Alternative care’ refers to care provided to children deprived of parental care. It does not refer to alternatives to institutional care, since alternative care can include institutions for children.
Alternative care is also defined as “a formal or informal arrangement whereby a child is looked after at least overnight outside the parental home, either by decision of a judicial or administrative authority or duly accredited body, or at the initiative of the child, his/her parent(s) or primary caregivers, or spontaneously by a care provider in the absence of parents. This includes informal fostering by family or non-relatives, formal foster care placements, other forms of family-based or family-like care placements, places of safety for emergency child care, transit centres in emergency situations, other short and long term residential care facilities including group homes and supervised independent living arrangements for children”.
There is no explicit definition of what distinguishes ‘family-based care’ from ‘family-like care’ in the UN Guidelines, although both are seen as distinct from residential care. In developing community- based services for children, the following definitions may be helpful.
Family-based care: A short- or long-term care arrangement agreed with, but not ordered by, a competent authority, whereby a child is placed in the domestic environment of a family whose head(s) have been selected and prepared to provide such care, and who are financially and non-financially supported in doing so.
Family-like care: Arrangements whereby children are cared for in small groups in a manner and under conditions that resemble those of an autonomous family, with one or more specific parental figures as caregivers, but not in those persons’ usual domestic environment.
Independent Living
The term ‘independent living’ is often used interchangeably with ‘community living’ in relation to people with disabilities and older people. It does not mean ‘doing things for yourself’ or being ‘self-sufficient’. Independent living refers to people being able to make choices and decisions as to where they live, who they live with and how they organise their daily life.
This requires:
• accessibility of the built environment;
• accessible transport;
• availability of technical aids;
• accessibility of information and communication;
• access to personal assistance, as well as life and job coaching; and
• access to community-based services.
It also implies the recognition of, and support for, family carers, including the need to help maintain or improve their quality of life.
In the case of children, independent living is used to refer to ‘supervised independent living arrangements’ and would only involve children aged 16 or older. These are settings where children and young people are accommodated in the community, living alone or in a small group home, where they are encouraged and enabled to acquire the necessary independent living skills.
