Municipal LTC obligations to support informal carers

Why was this example implemented?

The scope, focus, and organisation of care of older people have changed significantly over the past decades in Sweden. The number of people receiving home help increased until the early 1980s, after which the number of clients that received help gradually decreased, due to financial matters. Informal care in Sweden has gone through a transition from not being recognised to being a part of the health care system. Several programmes over a period of 10-15 years have been initiated by the government and managed by The National Board of Health and Welfare (NBHW) to improve the conditions for those who deliver informal care. This is a response to the downsizing of help to clients, but also a response to the research that has highlighted in the programmes the “burden of caring”. These projects/programmes and the research conducted within them have highlighted the necessity to implement an act that states from ‘should’ to ‘shall’ in municipal LTC obligations to support informal carers.

Description

In Sweden the responsibility for formal care and formal social services is divided between three levels: the national, the regional, and the local level. On the national level there is the Parliament and government which outlines the policy declarations and legalisation. The regional level is responsible for health and medical care e.g. the county councils. On the local level municipalities are, according to the law, obliged to meet the care and service needs of their citizens. The shift in recognition of informal care was made visible in the recent change in the Social Services Act. Until the summer of 2009 one paragraph of the above-mentioned Act stated that municipalities ‘should’ offer support to relatives that provide care on a regular basis to their kin who have a chronic need of care. This paragraph has now been changed and states that municipalities ‘shall’ offer support to relatives that provide care on a regular basis to their kin. The Social Service Act gives the citizens the right to apply for support. This doesn’t mean that they automatically receive support. But in those cases citizens can appeal. It is impossible to define the costs for the change of the paragraph because the change can be seen as a result of the already mentioned programmes. The costs of the programmes that have contributed to the changes in the act were covered by the government. In 1999 the government set aside €10,600,000 a year for a time period of three years to develop the ways of supporting informal carers. After this programme named ”Anhörig 300” the government has regularly set aside large amounts to develop support and research on informal carers. All together during the last 10 years roughly €10,000,000 have been set aside. This has led to the result that almost every municipality can offer support to informal carers such as relief care, support groups etc.

What are/were the effects?

The main purpose of several of these programmes has been to highlight the role of being an informal carer and develop direct and/or indirect support to reduce the burden for caregivers, and also to develop quality in the care of older people. Overall these programmes have led to the result that virtually all municipalities have a variety of different forms of respite care and other support forms for informal carers. There is also a fairly wide range of different forms of personal support; counselling or supportive conversations, and so-called family groups and the incentive funds have also enabled a wide variety of activities, provided by municipalities. So the new act was a result of the work and research carried out in the projects/programmes. So the change from “should” to “shall” is something that manifests the outcomes of all the programmes that have been running in the country for 10-15 years.

What are the strengths and limitations?

Strengths

• The notion that informal carers are protected in the legislation is strength in itself. This gives the citizens the right to apply and appeal if the support is rejected by the municipalities. 

Weaknesses 

• There is still very little evidence about what forms of support have the best effects, and it is the municipalities themselves that decides on what forms of support they offer. So the form of support offered by the municipalities may vary between different municipalities.
• The act does not specify what kind of support the informal carers could receive; this gives the municipalities the freedom to define “support to informal carers” themselves. 

Opportunities 

• Although municipalities still decide what kind of support they will offer and provide, there is now an opportunity for the citizens to apply for support and appeal if not granted. Thus the level of support offered by the municipalities is transparent. If not granted, and if a municipality has to deal with many appeals from their citizens it can be considered a problem. This can be seen as an opportunity from the informal carers’ point of view. 

Threats 

• The notion that the Social Service act - and the paragraph - changed, but the municipalities still decide what kind of support they offer is a threat and may create differences in forms of support between municipalities. And if the municipalities get an increasing number of informal carers who apply for support and/or appeal, how will that affect the municipalities costs?

Credits

External Links and References

• Kommunernas anhörigstöd slutrapport, 2009: 7  
• National Council for Health and Welfare, Sweden