Equal, normalized and included? Experiences with buying your own home for the mentally disabled

Type of the Paper: Full Paper

Track title: inclusive design & health promotion, communal living

Equal, normalized and included? Experiences with buying your own home for the mentally disabled.

Karin Høyland ^1,*,

¹* SINTEF Community; karin.hoyland@sintef.no

* The corresponding author.

Abstract:

This project examines the practices of six Norwegian municipalities, which, in a variety of ways, are trying to enable mentally disabled residents to build or buy their own homes. The survey has confirmed some previous findings: The financing model operated by the Norwegian State Housing Bank makes it possible for many mentally disabled people to purchase homes on the ordinary housing market. However, even though private developers are, without exception, friendly, this appears to be a complicated and resource-demanding process. The cases demonstrate how municipalities can enable better processes in a variety of ways. Leaving home can be a major upheaval both for young mentally disabled people and their parents, entailing changes in the young person’s responsibilities, personal economy, and sense of independence. The overall objective is to achieve inclusivity. Some of the homes are quite ordinary and are located among other similar homes, but our findings indicate that to date, residents experience little or no positive interaction with their other neighbors. Natural meeting places and communal areas dedicated to entire neighborhoods are rare in new housing projects. If we are to meet the objectives of inclusivity and participation, we must expand our focus and not only look at the homes but also at the neighborhood in which the residents will be included.

Keywords: housing design; mentally disabled; inclusion

1. Introduction

Owning your own home is an important part of Norwegian housing and welfare policy. Ownership of your own home and co-determination in deciding where to live are also human rights (UN human rights, art. 17, 22, and 25), which strengthen human dignity, equality, and normalization. The intent of a big reform in 1991 was that the mentally handicapped should live in ordinary neighborhoods. These intentions have now been followed up in a new social housing policy strategy, launched in December 2020 (Ministry of Local Government and Modernization, 2020). The home's design, size, location, and composition are important factors to ensure that the principles of dignity, integration, and normalization are followed. The report Room for All (NOU 2011: 15) confirms that the ownership line must also include people in need of adapted housing. For the mentally handicapped, the challenges vary from purely financial to the need for close follow-up of care services. The reports "Large Housing Associations for People with mental disabilities" (Kittelsaa and Tøssebro 2011) show how the housing situation for the mentally handicapped has developed in the period after 2000. The report describes how many municipalities choose to provide housing for the mentally handicapped in larger complexes and facilities. This is contrary to the reforms and policy guidelines on integration and participation in society. 

Many residents with mental disabilities live in contexts where they have close connections to service providers. This creates a special situation. In the report, developmentally disabled people's housing and services 10 years later (Breivik and Høyland 2007) believe that questions can reasonably be raised about the organization of care to those most needed becomes so dominant that the mentally handicapped, without extensive need for assistance and supervision, is "involuntarily" covered by it. According to Tøssebro and Lundeby, this connection between housing and service is "undoubtedly a characteristic feature of the housing of the mentally handicapped at the beginning of this century." 

In Norway, normalization has primarily been reflected in housing policy, as housing for target groups should, as far as possible, be established as ordinary houses in ordinary residential areas (Report 47 (1989–90), page 51). However, many "ordinary" residential areas lack many of the qualities that these people demand. Some qualities include the ability to reach important services and meeting places without driving a car. 

The risk of a one-sided glorification of the independent life in one's apartment also appears in various ways in the study by Ringsby Jansson (2002). The loss of opportunities for access that a denser housing offer entails has, for some, a pressing need for help, resulting in new, more subtle forms of social control. Instead, everyday life is governed by time aids and very structured routines. While individual separation is often presented as essential for the development of independence, it is clear from Ringsby Jansson's study that the common areas and the public arenas have the important potential to develop independence in interaction with others. Through fellowship with others, people get the opportunity to try against each other and strengthen themselves and each other. Szivos (1996) makes similar reasoning when she questions whether a one-sided focus on one's own home is necessarily a good thing, something everyone should strive for, and whether it means increased welfare for everyone.

 This sheds light on planning for target groups with different needs of help and neighborhood development. Localization is an important premise for creating solutions that strengthen the experience of inclusion and normalization. Several reports point to how the municipality can conduct area planning and establish housing for people with disabilities who need help as part of a comprehensive site plan. Thus, one can take care of the intention of normalization and integration to a greater degree. Furthermore, Ringsby Jansson points out that the ideology of individualization is clear in the leaders' perception of services and the importance of the private arena, and that residents should be encouraged to learn to use their apartments and spend as much time there as possible. It is an expression of thinking about and striving for new forms of housing to constitute the institution's direct contrast. This sets up a precondition that the private is exclusive of the collective and the community. It is often supported by emphasizing that a group has no common room or meeting point. Everyone should receive support and help in their own home.

 This led to some key research questions. How can the community help the mentally handicapped buy their own home? Is owning your own home an important issue for being independent and feeling included? Does living in ordinary housing in an ordinary living environment mean that you are included in a neighborhood and part of a neighboring community?

2. Theories and Methods

This research was carried out using a case study method (Yin, 1994). The selection of cases was made by choosing cases that have tried in different ways to create solutions and support for people who want to buy and build their own homes. The cases could be seen as a kind of experiment.

Socio-technical experiments are distinct from scientific experiments carried out by psychologists or physicists. The laboratory—either as a distinct physical space or as a more general metaphor—sets scientific experiments apart from socio-technical experiments. Socio-technical experimentation implies a more social constructivist position: society is itself a laboratory and a variety of real-world actors commit to the messy experimental processes tied up with the introduction of both housing and care solutions to purposefully re-shape social and material realities [17, 18, 19].

The study uses the narrative qualitative method for examining real-life experiences. We are telling narratives (narratives) to construct meaning and understanding that include how different aspects influence everyday life. Everyday life is influenced by the care model, care philosophy, housing solutions, and neighborhood qualities. Narrative analysis deals with textual material based on, e.g., interviews,

3. Results

Both Strinda Hageby and Ladebyhagen are large new housing projects about outside Trondheim city center. In Strinda the homes are scattered in a large housing complex consisting of 88 homes, mostly owned by the residents themselves.

In a similar case in another part of the town, One of the carers told this story: "It started with six residents who bought a home in Ladeby Garden. Today, 13 different residents form a kind of housing cluster. They have a common group of carers with a care manager. The homes are not located side by side but are spread around in different blocks. Many of the residents have lived here for six years and have gained some experience living there. Most of them moved from living with their parents and were in their twenties when they moved in.”

-"After the residents bought their apartment, the municipality investigated what kind of adequate services were needed. The municipality chose to buy an apartment, which is used as a base for the employees. Carers visit the resident's home and shall act accordingly.” (One of the carers).

The work base consists of a living room with a kitchen and one room that is used as an office (the original bedroom), a bath, and an entrance. The staff says that they think that this solution works okay. Since it is an ordinary apartment, the municipality can choose to sell it again if the needs change. Today, this base is used by 15 employees. It's 24-hour staffing, which means that they have an awake guard at night and usually 2–3 people during the day. All of the residents have individual assistance arrangements. Our informant says that some residents can read, write, text, and call. Others cannot. Some fix their social lives very well; more support is required for others. There is a staffing plan that takes into account all of these individual needs. Residents do not live as close together as in a cohousing project. However, we rely on agreements and good communication to assist with weekly plans. The residents call the base or the staff if they are wondering about something.

Some of the users are offered daycare, while others have work, work in a grocery shop, etc. The offers are adapted to their abilities. The services given are typically practical assistance, housing guidance, health services that can include follow-up medication, etc. The staff also deals with what goes on in their leisure time. They say that they try to assist those who need it. Many residents deal with this all by themselves; others need support, but this is based on individual needs. They also arrange some joint activities for all of them living here. It could be Sunday trips, barbecuing by the sea, or something similar. This area has good connections to public transport, and our informant tells us that they mostly use the bus when travelling around. They arrange Friday tacos, etc. It could be five, six, or eight- people who would like to join. The staff supports the planning, but they say that they try to assist in such a way that the residents do as much as possible themselves. The residents invite, and the staff supports. The services are organised so that everyone has a primary contact who has great coordination responsibility. Then it's about having an overview of everything, from practical detail to follow-up in the health care system. Some of the residents knew each other before. However, most of them became known after they arrived here. Some of them also visit each other. Some have cognitive challenges that can make establishing friendships complicated, so the staff tries to help. He can tell that there have been conflicts, and they have, of course, disagreements (as all of us have), but the staff tries to assist.
Our informant can tell that the residents use some of the offers in the neighborhood. The shopping mall is close by, and some people use the shops and restaurants there. To varying degrees, the residents make use of what the city has to offer. There are big individual differences. Some like to go to football matches, some like to go to the cinema, and they all use the recreation areas. The experience so far is that they have not been in conflict with other neighbours to any appreciable degree.

"Our care Philosophy has an individual focus. We can see that the municipality needs different housing offers, which means that the residents can choose and find the housing offer that suits them well. I think that people with developmental disabilities have the right to decide how they want to live, like you and me. We work to provide individual measures and experience.

Based on these experiences, Trondheim has further developed this housing concept. Clusters with both base and common rooms for the residence have also been tried out. Other municipalities have established one "contact person" in the municipality who can support and coordinate both dialogue with housing developers and those who organise the care. The municipality has arranged an open event where you can look at different apartments before you move in. They also have opportunities to rent before buying. This way, you can try out a solution before moving on to the next step of buying an apartment.

Another story is told by a father in the Stange community. His son met some other youngsters at a kind of course for young people with special needs. This accommodation contains work training, social activities, and possibilities for a holiday stay. “A kind of holistic care model (housing, work, culture) constitutes the basis for this care concept. It was based on Rudolf Steiner's philosophy. We started to dream about how we can build a cohousing project for those friends. We bought a house on the open market.” The house had to be demolished to make room for our housing association. An architectural competition was then held, and a somewhat untraditional solution was chosen. The subsidy from HB was crucial. It went pretty fast to build the house, and then the residents could move in. The Stange municipality helped the parents with building and planning. But after that, the residents bought their apartments. The community rents some of the areas used by the employees. The residents have established a board and user committee.

The father told that now they are very happy with the solution. "It consists of 10 apartments and common areas. We did not want them to build some kind of institution, but we saw the benefits of having 10 people living together and engaging in common activities. We believe that the philosophy of having your own home leads to many residents becoming lonely in their homes. In "our project," you can choose to do things together in common rooms or you can choose to be by yourselves. The group of residents is also leasing a car. It makes them able to go on trips and participate in various events around Stange. Of course, not everyone has to join. They go to the mall, the cinema, and for birthday celebrations, etc. Not long trips, but still, it is nice breaks and fun in their everyday lives.”

The father also explains that these concepts are very much based on relationships. Relationships must be built between residents, between employees and residents, and between parents and employees. The cohousing project was based on people already knowing each other.

4. Discussion

The study is small and does not try to give a general impression of how to establish housing for the mentally handicapped in Norwegian municipalities. The cases have been selected because they have tried some new ways of working, looking for opportunities for the mentally handicapped to buy and own their own home. This report will convey the experience gained with the procurement process and the specific solutions. However, several of the present measures are so new that one has not yet had time to gain experience with the solutions themselves.

Buying a home at the open mark helps to reduce housing queues. In the main, it can be said that the fact that people with mental disabilities can buy into already planned housing projects helps to make it easier to provide housing for the target group. However, the procedures could be difficult. Some are driven by single parents, some are organized by parent groups, while others are driven by the initiative of the municipality. Only in very few examples have structural measures and changes been made. It is therefore mainly about the purchase of ordinary universally designed homes, as well as in some examples the purchase of base areas or common areas. The homes in such projects are to a slightly different extent scattered in the projects and are referred to here as housing clusters. Obtaining housing is only a small part of the whole picture, making a good everyday life. The cases show how the care philosophy, the housing solution, and the neighborhood are connected.

5. Conclusions

Obtaining housing is only a small part of the whole picture of creating a meaningful everyday life. The Housing Bank's support schemes work as intended; there is no reason why the municipality should not recommend people with developmental disabilities buy a home themselves. However, the survey also shows that it is important to emphasize that "the task has not been solved by providing the homes. A solution must provide both services that help support the individual's needs and be part of some kind of social network. The overall objective is to achieve inclusivity. Some of the homes are quite ordinary and are located among other similar homes, but our findings indicate that to this date, residents experience little or no positive interaction with their other neighbors. Natural meeting places and communal areas dedicated to entire neighborhoods are rare in new housing projects. Suppose we are to meet the objectives of inclusivity and participation. In that case, we have to expand our focus and not only look at the homes but also at the neighborhood in which the residents will be included.

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