‘We Care’ – Representative body of informal carers, relatives and friends in Germany

Warum wurde diese Initiative implementiert?

Beschreibung

Findings of the 23-country research project EUROFAMCARE have demonstrated a more prominent and influential position of informal carers in countries where their interests are represented by lobby organisations. This insight triggered the formation of EUROCARERS as an association of informal carers at European level in 2005. ‘We care’ as its German offspring was supported in the initial phase in 2008 by already existing national associations for informal carers in Scotland, Finland and The Netherlands who shared their experiences as regards work contents and methods. ‘We care’ has at the time of reporting (December 2010) over 100 members, mostly relatives of people in need of care but also professionals, such as researchers or senior advisors at the local level. The latter are often more experienced in representing people’s interests, have expert knowledge and personal relations with both practitioners and policy-makers, and are under less time constraints than the relatives of dependent older people. Hence their contribution to the work of ‘We care’ is considered an important asset. The range of activities at the national level comprises annual meetings, workshops with special topics, e.g. poverty through care, the reconciliation of work and care and the new legislation concerning care leave for employees. The primary focus at the regional level lies on the enhancement and establishment of new local groups. At the local level, the groups are self-determined in the content of their work and the frequency of meetings. So they differ considerably in the scope of their activities which include membership campaigns, networking and fundraising, information and counselling on existing support systems for informal carers as well as organising meetings to give caring relatives the opportunity to exchange knowledge and ideas.

In their political work, ‘We care’ focuses on legal regulations and what should be improved from the informal carers’ perspectives. As a voluntary association with a national catchment area but no stable funding and paid staff, ‘We care’ operates under difficult conditions and is still developing. Its board is comprised of 5 members. ‘We care’ has appointees for each of the 16 German federal states and 8 groups working at local level. Funding for non-personnel-costs such as workshops and public relations is given on a project-financed basis, mainly by Statutory Health Insurance Funds and a Statutory Accidence Insurance Fund. More information is available in German here.

Welche Effekte wurden erzielt?

Regarding the restricted financial resources and limited manpower, ‘We care’ is not in the position to systematically monitor, document and evaluate the particular activities of their members and the impacts of their participation in public events and putting forward demands. Hence their effectiveness in addressing gaps and improving interfaces is difficult to assess. Their potential impact, however, especially on informal carers but also for the LTC system, could be high if the measures specified in their Guiding Principles were taken seriously in political decision-making, and their funding ensured. The growing recognition of ‘We care’ in the political sphere is expressed by an increasing awareness of the media during the last couple of months. In addition to that ‘We care’ was invited to consultations with the National Minister of Health in September 2010 and with the Parliamentary Fraction of the Social Democratic Party in November 2010. As a result ‘We care’ is now represented in the “Care Dialogue”, recently established by the German Minister of Health, which is preparing another reform of the Care Insurance Law (the last reform dating from 2008). In addition to that, ‘We care’ is observing a growing presence of caring relatives, officially invited to debates about LTC at local, regional and national levels. In 2010, ‘We care’ was a prizewinner in the “USable Transatlantic Idea Competition” of the German Körber Foundation (a call originating from the US), and it was nominated for the German Engagement Award.

Worin bestehen die Stärken und Schwächen der Initiative?

Strengths

• Specific strengths are the commitment of the active volunteers, a common belief in fighting for the same interests, the acceptance of different backgrounds and motivations, including the cooperation between formal and informal carers, and the transparency of the work of the board for all members.
• Furthermore, it can be acknowledged that ‘We care’ has initiated a bottom-up process for the specific representation of the interests of informal carers which had not existed before.

Weaknesses

• As an association which solely relies on voluntary work, ‘We care’ suffers from deficits deficits in infrastructure, in particular in relation to the high expectations of the board

Opportunities

• The cooperation and exchange with EUROCARERS at the European level and with other national organisations is perceived as a valuable opportunity for support.
• The outcomes of the ‘We care’ network are still mainly restricted to the formulation and publication of guiding principles and measures for informal carers, which are based on the EUROCARERS programme and will be further adapted to the German situation. 

Threats

• Lack of time of carers to engage as members and volunteers
• Diverging ideas of the speed with which developments should take place
• Difficult decision-making processes regarding joint statements and demands
• Apart from the risks associated with small NGOs that have a large regional coverage, there is the risk of competition from other associations with a view to political influence and funding.

Impressum

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