EUKN interview with Ms Cecilia Henning

5 November 2013

Within the context of the EUKN Policy Lab on Housing and Care, for the Netherlands, the EUKN Secretariat interviewed Ms Cecilia Henning, a researcher and an Associate Professor at the School of Health Sciences at Jönköping University, in order to get insights into the Swedish long tradition of decentralized health care responsibilities and vast experience in supporting independent living for elderly people.

EUKN: Cecilia, you are an experienced researcher on social work and the provision of health care. What motivates you to work on these topics?

CH: For me it is important because of what we have decided in Sweden after a government report in 1983, which started the "Ageing in Place" policy. This report is driving everything: the organization of health and care and the housing for the elderly. I think it is very important to do research on how it is possible to age in place with dignity because there are a lot of problems connected to that. In Sweden we have a long tradition of being strict with institutional care, but especially that report was a starting point for a more conscious approach for Ageing in Place. The report stated that economically it was less expensive, but also that the old people preferred to age independently. It claimed that there are no contradictions with this policy because it is good for the national economy and it is good for the people. Of course there are problems that we can see now.

 

EUKN: What are your tgoughts on decentralizing health care responsibilities?

CH: In 1992 we had a big reform, transferring the responsibility for elderly care from the state to the municipalities. We have three levels in Sweden: the state, the county and the municipal level. The county is responsible for the health care connected to hospitals. When it comes to health care for people living at home or for people needing facilities of various kinds, it is the municipalities who have that responsibility. Organizing a smooth transition was not easy in the beginning. Still we have some problems with primary care in residential housing that is run by the municipality because the doctors from the primary care have to visit these places and not always this is functioning very smoothly. Also the staff was transferred from the county to the municipality, and some staff thought that it was less prestigious to work in the health care in the municipality than in the county.

 

EUKN: How to finance health care and keep costs low?

CH: The municipalities get money transferred from the state, but they also get taxes from their citizens. There are also fees; people have to pay for their home care. Municipalities try to be more cost-effective, that is why they opened up for alternative private providers, to have more competition. People have to pay for the service. Even if it is heavily subsidized there are fees for housing and care. Before, you could get more services from the Home Care organization. Now there is a priority towards a smaller group of people with heavy needs. There is a more strict needs assessment. A smaller group of people get a more extensive help. There is a shift from home help to other kinds of support that make it easier for people to live more independently like security alarm devices and transportation services. This is also a strategy to keep your costs low: preventive measures.

 

EUKN: What are your thoughts on a tax deduction of private home help?

CH: People that want to have services like cleaning, and do not have heavy needs have to pay more or have to solve it with private entrepreneurs, which is now possible. Due to a reform that allows private companies in this sector. You can buy services from them and it is to a certain extent subsidized because you can deduct it in your taxes. My mother who is 99 has a private cleaning lady, and she can then deduct the costs for that. This is new and we took it from Finland, and now I heard they want to do the same in Norway.

 

EUKN: How do municipalities supporting family care?

CH: In 2009 there was a new law, which made it an obligation for municipalities to support family care in different ways. This is also a strategy to prevent that there will be more demands on the Home Care organization, because if you support family care they will be able to take the responsibility for a longer time. The support could be: education, organizing support groups for family carers, day care or financial support, etc. However, financial support is now less in Sweden, we had a discussion not to have too much of financial support because that it can be a trap for women and immigrants. When immigrants stay at home, taking care of their relatives, they have no work experience when the relative dies. In Stockholm, in an area with many immigrants, some private entrepreneurs had made it as a business idea to employ the family carers in the organization. It happens that the family careers do not want the relatives to improve in health or to be able to take care of themselves, because they want to get more money. What the municipality did is that to have a license to be a provider, you have to do lots of administrative work, reports to specify what you are doing. This makes it so complicated for providers of home carers, that some already stopped their business.

 

EUKN: You and Magnus Jegermalm have written a paper for the EUKN Policy Lab “Housing and Care”, in which you give an overview of the elderly care in Sweden. One highlight of the public service is the “Home Help” programme, started in the 50’s, which promotes independent living. Can you tell us a bit about its history and what it consists of?

CH: It started from the Red Cross. In the beginning it was a way of helping people by having one or a few helpers coming to their homes. Today we have the problem of continuity. There are many more helpers coming into their homes, because it is a big organization and it is also more split. The people that do the cleaning are not the same that give you care. Organizing help for the people with heavy needs, is very difficult, therefore these people can have many different people coming every week. My mother, of the age 99, has had at least 5 to 10 different people helping her and she has no heavy needs.

 

EUKN: Tell us more about different kinds of support to independent living.

CH: There is a shift now from extensive care to prioritizing heavy needs. I would say the costs are almost the same. Now we have to shift from home help to other forms of home care. Home help is a person who comes in and helps you doing the different tasks. Within home care you can get other types of support, like transportation service, adaptation of your flat or security alarm. Such kinds of support have increased very much.

 

EUKN: Linking housing policy to social policy: "Aging in place" policy has gone too far, right?

CH: What is interesting in the Swedish example is that we have had a very decisive policy towards Ageing in Place, but we have found that we have gone too far. The thing is that we have closed a lot of residential facilities. To get admitted there you need to go through a needs assessment. Many of such facilities have been closed because the politicians and the municipalities think that we should not have so much residential care, we should have ageing in place. So instead, we give home care in people’s homes. But at a certain point old people want to go to residential care units because they feel insecure and lonely.

 

EUKN: Is Safety Housing an alternative to residential care and independent living?

CH: There was a big discussion because some elderly people wanted to go to a residential care unit and were refused because to be lonely or to feel insecure was not enough to get a place. In response to this, now we are developing a new concept in Sweden that is subsidized by the state and it is called Safety housing and this alternative is now promoted. Because there was a need for something in between ageing in place and residential care, and I think that Sweden is the only country in the world to have gone too far and now made a U-turn. For this safety housing there is a special queuing, you don’t need a need assessment for it. You pay rent, so you can say that in this kind of housing the residents pay most of the costs. There is a coordinator employed in these facilities. It could be that the municipality pays this person, or the housing company pays the person, or that you as resident have to pay part of the salary for this person.

 

EUKN: Tell us more about the informal caregiving in Sweden.

CH: Informal caregivers help with a lot of things. The research from my colleague Magnus, shows that it has been taken for granted that as Sweden has such an extensive formal care organization, we have very little informal care, because it is not needed. This is false. New research tells us that there is much more ongoing informal care in Sweden than we thought of. It might be that we have organized a formal care that also supports informal care to flourish. Like me, I have a mother with 99 years old, she gets some home care. I can help her with lots of other things, which I do, and I do not have such a heavy burden on my shoulders. That makes people more willing to do other things. We are calling effect crowding in: you get more of both informal and formal care. Crowing out is when formal care replaces informal care. That is not the situation in Sweden.

 

EUKN: Informal care, is it organized or spontaneous?

CH: What is very interesting is that in many countries, like US and Germany,  volunteering in welfare is very often organized. In Sweden we have also volunteering organizations but they do not do so much care, they do more leisure times activities. Within the care sector the informal care is often not organized, it is more at an informal individual basis. That is a big difference and that is why it has been invisible up to now.

 

EUKN: Is there a difference between rural areas and cities?

CH: Yes, rural areas have more of an informal context. But also in cities. My mom lives in an ordinary area with high-rise buildings and flats, and she very often tells me: I could have never aged in place and stayed in my place at 99, if I wouldn’t have so many nice neighbours to help me with different tasks!

 

EUKN: Can you tell us about the project "Future Workshop" for empowerment of old people that you carry out at the School of Health Sciences in Jönköping?

CH: The Future Workshop method comes from Germany. It is a method for empowering and organizing people in different situations. It was born in Germany after the Second World War. The idea was that they had to rebuild Germany and at the same time to foster a democratic process to prevent a new totalitarian political development like the Nazis. The method has three phases: the first is identifying the problem, the second is to be creative and to formulate a vision for a new situation, the third phase is to implement ideas in to practice. What we have done, me and my colleagues is to take this method and to adapt it to working with old people. We have had 10 different projects. We have old people coming together, in a structured way to discuss a topic. The theme can be "how to improve the housing area to facilitate our daily life", or it could be "how old people can get involved in community planning". This is a way to involve old people, and make them active in improving the conditions of their daily lives. The idea is that we must listen to old people. The planners should not think what is better for the old people, they should ask the elderly and try to fulfill their wishes.

 

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