Living on equal terms: supporting people with acquired brain injury in their own homes

Gail Cunningham, Moira Wilson and Sara Whiteley

Established in 1993, Connections enables people with acquired brain injury to live in ordinary housing instead of hospital or supported accommodation, by providing enough visiting support to assist people to maintain their tenancies.

This study identifies the key features of the services, reports the views of services users, carers and staff involved, and explores how usefully the model might be replicated by other agencies.

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Connections was established in 1993 to provide flexible support to enable people with acquired brain injuries to live in ordinary housing instead of a hospital or supported accommodation and to develop community links. This evaluation set out to establish whether or not the Connections model satisfactorily supported people to live in the community, and to identify the key features of the service. The evaluation focused on the views and experiences of the people using the service and found that:

  • People with a wide range of needs were supported by Connections. Some service users lived on their own, receiving only regular support from Connections, whereas other people also required daily personal care and/or help with housekeeping.
  • About half of the service users had continuing needs or problems and were receiving long-term support. The others were receiving short-term support, which would end after the completion of specific tasks, for example establishing a pattern of activities. However, staff found it difficult to decide when to withdraw, in view of the lack of other forms of support for this group of people.
  • Through a person-centred planning approach the service had: enabled over half of the service users to obtain their own tenancy; assisted service users to increase their involvement with the community; and worked in partnership with service users to increase their ability to do things for themselves.
  • Service users were generally very satisfied with the support service. They had a sense of being at the centre of the service and felt that staff respected their right to make their own decisions; liked and trusted the staff, and felt comfortable in saying what they wanted and discussing problems; were able to access services, activities and financial assistance with information made available by support workers.
  • Social workers, voluntary organisations and hospital-based medical staff referring people to the service reported that Connections differed from other services in its expert knowledge and experience of brain injury; co-ordination of the range of services affecting people's lives; its ability to offer more effective advocacy and a truly person-centred approach; and the promotion of re-engagement with ordinary living and communities.

The effects of acquired brain injury

"...there's so many problems that you can't just say 'oh, there's this problem''s 100 per cent of everything that is affected." (service user)

Brain injury can have a devastating effect. Each person will have a different combination of disabilities depending on the type of injury and its effect, age, pre-injury circumstances, personality, living environment and the extent and nature of any rehabilitation received.

Difficulties with memory, concentration and communication are almost always features of brain injury. People may also experience a variety of changes in personality, behaviour and emotions. It is likely that all of the above symptoms will persist for many years after an injury and, for many people, will be life-long. As a result, people with brain injury are generally more dependent on spouses and parents than they were prior to their injury, bringing new pressures to relationships.

Socially, people can become very isolated and returning to work, even if it is possible, can be problematic. In summary, the cognitive, behavioural and emotional impact of acquired brain injury can result in:

  • loss of independence;
  • reliance on families;
  • inability to take part in community activity;
  • difficulty in fulfilling roles, e.g. employment;
  • strain on relationships;
  • isolation;
  • little sympathy or understanding from society in general.

The individual is likely to require care and support on a long-term basis, although the nature of this support may vary over time. Providing support to people with acquired brain injury "People should have the right to live in the community in a setting of their choice and should get support and assistance to do that. They should be in control and have power over their lives." (member of Connections staff)

Connections was established to provide emotional and practical support to meet the needs of an individual with acquired brain injury. When this study was carried out, it was supporting 43 people. Although Connections did not directly provide services such as day-to-day personal care or housekeeping support for individuals, staff were usually involved in helping to establish these arrangements.

Connections offered a service to people with a range of needs, including some who required long-term support and others who required intensive support in the short term, for example after leaving hospital.

Key features of Connections

The key features of the Connections service were:

  • a 'social model' of disability informed and underpinned the service and staff had shared, consistent values guiding their work with service users;
  • a person-centred planning approach was used which clearly focused on the service user and upheld their views, aspirations and decisions;
  • the provision of information, which enabled the service users to make informed choices, was a fundamental part of the service;
  • staff were strong advocates on service users' behalf when dealing with other agencies;
  • staff took on a role co-ordinating the care and support provided by a variety of agencies to service users;
  • the importance of providing long-term support to service users was recognised.

Service users' views All 43 Connections service users were classified as having a moderate to severe brain injury and had cognitive impairment. They lived either alone, with family members or with care staff. The researchers found that Connections service users:

  • had a sense of being at the centre of the service and felt that the staff respected their right to make their own decisions: "I feel very involved with it [decision-making]...she doesn't say 'You'll do this'. It is very much both of us, which is really important to me because I was in supported housing before...I was told what to do the whole time...I was never involved in the decision of what I wanted to do."
  • liked and trusted the staff and felt comfortable in saying what they wanted and in discussing problems with staff: "She's there to help me. I just tell her what it is I need help with and she says 'we'll do this' because she knows the right places to get that kind of help...I regard her as a friend."
  • were positive about becoming involved in various activities which they had identified through discussion with staff. These activities helped them to develop a structure for their day and increased their social involvement in the community: "I like Jewel and Esk I'm working with small engines...and things like far I do most of the things organised...[My support worker] sets up so many things for me."
  • acknowledged that they would not have access to services and financial assistance without the information made available by staff. Family members confirmed this. For example, one family carer said: "There's things that we don't have the connections to find out, and the support worker does all the groundwork."

The service provided The researchers found that:

  • over half of the service users received help with securing a house;
  • contact with, and on behalf of, service users who required long-term support accounted for almost two-thirds of the total number of contacts made by staff;
  • almost two-thirds of staff time was spent in direct contact with service users. This included telephone calls and letters in addition to meetings, each of which lasted, on average, a little over an hour;
  • almost a quarter of staff time was spent in contact with agencies, professionals and others on behalf of service users;
  • around 40 per cent of staff contacts with, or on behalf of, almost all service users featured staff gathering or giving information;
  • giving advice and support about day-time activity was the most common reason for active support to service users. The long-term needs of people with acquired brain injury "I've never thought about her not being there, to be quite honest." (service user)

About half of the service users had continuing needs or problems and were receiving long-term support. The other service users were receiving a short-term input which would end after the completion of specific tasks, for example, to establish a pattern of activities. However, staff generally found that, as their relationship developed with the service users, further issues emerged which needed to be addressed.

Staff believed that the offer of long-term support was one of the most important aspects of the service and acknowledged that they did have some difficulties in deciding when to withdraw in view of the lack of other source of support. Service users generally saw their relationship with Connections staff continuing in the long-term although some thought that their need for support would alter or increase as their life changed. However, the question of where the financial responsibility lay for provision of the long-term service had yet to be adequately addressed.

Professionals' views Social workers, voluntary organisations and hospital-based medical staff referring people to the service valued its capacity for longer-term input with service users, which complemented their own input. Professionals reported that Connections differed from other services in the following ways:

  • expert knowledge and experience of brain injury;
  • specialist support for people whom some agencies regarded as 'problematic';
  • an understanding of the difficulties experienced by brain injured people in using services;
  • the co-ordination of a myriad of services across peoples' lives;
  • the ability, as a non-statutory agency, to offer more effective advocacy and a truly person-centred approach;
  • the promotion of re-engagement with ordinary living and communities.

Six service users' stories

Six service users were interviewed about the changes which had occurred in their lives as a result of their contact with Connections. The information was analysed using John O'Brien's 'five accomplishments' (choice, respect, community presence, community participation, competence) to highlight changes in their accommodation; occupation; recreation; network of contacts; decision-making; and aspirations. The researchers found that:

  • each service user had increased opportunities for choice where this had been restricted by their previous circumstances;
  • service users had achieved their aspiration to hold the tenancy of their own home;
  • most of the six service users had increased their involvement in activities and use of local community facilities. This had increased their opportunity to make new contacts;
  • four service users had successfully established themselves in their tenancy and continued to maintain the tenancy with support. Two service users were at the stage of planning how to maintain their tenancies with support;
  • service users in tenancies had developed their competence in carrying out everyday tasks through having the level of assistance and support they required.

One service user's story Mr B, aged 23, had received a brain injury as the result of a street attack and consequently had severe short-term memory problems, blackouts and difficulty in coping with daily living tasks. He was referred to Connections as he was living in a homeless persons' hostel and wanted help to find a house. With Connections' assistance he has realised his aspiration of getting a flat and furnishing it. He was aware that he would continue to need Connections' support when he was living in his flat and hoped that the support worker would continue to give him practical assistance with money, bills and letters. "I can't read and write that well because of what happened to me."

He appreciated the way in which the support worker listened to him, provided him with the information he needed and took time to explain it to him. "He's a man that will sit and listen to you and if you don't understand something, he'll explain it to you." He valued the relationship he had with the support worker, which he felt was based on mutual respect. "I treat him with respect and he treats me with respect...the same as everyone else." Mr B stated that he was in control of the decisions he made and that, if he required information or an explanation, he would ask for it. "It's got to suit my standard, not his...he's not the boss, I'm the boss, if I don't agree, I'll say."

Mr B was confident that, with Connections' help, living independently would work out for him. About the study Initial interviews were held with 22 of the 43 service users. Subsequently, six people were interviewed in more depth. Face-to-face and telephone interviews were carried out with Connections staff and with professionals from referring and funding agencies. Using palm-top computers and an adapted database, staff collected detailed information about each contact with individual service users for a number of months. This data was analysed to illustrate the patterns of service delivery and types of interventions used by Connections staff.