Literature review and power point presentation

Learning Disabilities

The Official Journal of the British Institute of Learning Disabilities

ORI G IN AL ARTI CLE

How adults with learning disabilities view living independently

Rebecca J. Bond, Occupational therapist, NHS Plymouth, Plymouth Primary Care Trust, Westbourne Unit, Scott Business Park, Beacon Park Road, Plymouth, PL2 2PQ, United Kingdom. (E-mail: rebecca. [email protected]) and Jenni Hurst, Lecturer, University of Plymouth, Peninsula Allied Health Centre, Derriford Road, Plymouth PL6 8BH, United Kingdom

Accessible summary • Nine people with learning disabilities talked about living on their own.

· They talked about good and bad things in their lives.

· They said it is sometimes hard but better than living in residential care.

· They want people who provide services to know that it can be hard to live alone.

Summary It is seen as increasingly important for people with learning disabilities to be supported to live independently and manage their own self care, productivity and leisure activities. This qualitative study explored the experiences of nine adults with mild learning disabilities who lived alone with minimal support. Their narratives were analysed using thematic analysis and seven themes emerged. These were feelings on living alone, practical issues, support issues, choice and control, vulnerability, health issues and the impact of having a learning disability. This study has implications for service users, professionals and service providers working with people with learning disabilities. In particular, the issues raised reflected the need to increase social inclusion and provide the right level of support. Participants talked about service providers needing to be aware of their vulnerability and wanted people to respect their right to make their own choices.

Keywords Independent living, learning disabilities, qualitative research, service users’ narratives

ª 2009 Blackwell Publishing Ltd, British Journal of Learning Disabilities, 38, 286–292

doi:10.1111/j.1468-3156.2009.00604.x

ª 2009 Blackwell Publishing Ltd, British Journal of Learning Disabilities, 38, 286–292

Introduction

One of the key principles outlined in the English Policy documents Valuing People (Department of Health 2001) and Valuing People Now (Department of Health 2009) is to enable people with learning disabilities to have greater choice and control over their lives, including where they live and support to live independently. Occupational therapy is one of the professions working with people with a learning

This study was completed as part of a Masters degree in Occupa- tional Therapy undertaken at the University of Plymouth.

disability within their networks to assist them in to live independently (Donati 2009). Understanding the impact of living alone can aid such professions to assist people to gain appropriate support.

The current changes in service provision planning suggest that there will be increasing numbers of people choosing to live independently or with support in their own homes and the need to increase the availability of accessible and sustainable housing (Office for Disability Issues 2008). The Down’s Syndrome Association (2008) while acknowledging the aspirations of people with learning disabilities, expresses concern at the level of support available and whether this will meet the needs of people with learning

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disabilities. There still appears to be a lack of evidence to support the successful implementation of these planned changes (Forbat 2006).

Literature review

Evidence exists that people who have moved from larger institutions preferred living in the group homes they moved to (Forrester-Jones et al. 2002; Holland & Meddis 1997). Studies such as those by Stancliffe & Keane (2000) and Barlow & Kirkby (1991), concluded that people in supported living placements had more life satisfaction than those in residential care. Currently, there is a lack of evidence to suggest that they like to live alone.

Within this framework, independent living can be defined as enabling independence by receiving the right support how and when it is required (Morris 2004). While there has been an increasing move into the community in the last decades there is still no accurate data detailing the number of people with learning disabilities living indepen- dently (Beadle Brown et al. 2004). People who live inde- pendently need a complex repertoire of occupational skills and the opportunity to decide which aspects of their occupational performance need additional support to main- tain a healthy lifestyle (Heaton et al. 2001). One difficulty may be the ability of the individual to maintain and improve their occupational performance with less support. Occupational therapists assist with this by identifying the strengths and needs for the required range of skills required by a person with a learning disability and their support network (Donati 2009). Inclusion in the community is dependent on having the opportunity to contribute to development of accessible services (Parry & Jones 2009). Friendship has been highlighted as an important compo- nent of support by people with learning disabilities and accessibility of friends should always be considered when moving to independent accommodation (Long & Holmes 2001; McVilly et al. 2006). The vulnerability of those who live alone has also been highlighted (Cooper 2002; Whittell & Ramcharan 2000).

Maintaining health is a concern if someone is living independently and primary care staff need to be aware of people with learning disabilities using the service (Hames & Carlson 2006). The lack of confidence of primary care workers in treating people with learning disabilities remains an area of concern (McConkey 2000). This could account for the lack of practical support being offered to the participants in this study around taking their medication. Similarly, a review of integrated care approaches found there was a lack of published studies looking at the potential benefits of adopting a more integrated approach to treating their physical health needs (Jansen et al. 2006). Living alone does not mean that there are not issues to contend with and it is not always possible to be part of the local community

(Holman 2007). This study provides the views and percep- tions of nine people with learning disabilities who have already achieved independence and wish to contribute to the debate.

Aim of the research

Living independently is viewed as desirable by many people with learning disabilities and service providers. The aim of this study was to research the views of people with learning disabilities about the reality of living inde- pendently and to hear their stories.

Informed consent

Gaining informed consent from people with learning disabilities raises ethical issues (Hutchison 2005). In this study, people with mild learning disabilities who were already demonstrating the skills needed to live alone were asked to participate. It was therefore concluded that they would be able to give informed consent if the materials were presented in an accessible and meaningful manner. Consent to conduct this study was obtained from the local ethics committee. Compliance with the Data Protection Act (1998) was maintained with all research data.

Method

A qualitative research design was chosen for this study as the aim was to explore the experience of living alone and to address the increasing desire of people with learning disabilities to have their voices heard and to take an active role in learning disability research (Department of Health 2006). The semi structured interviews were completed at times and venues to suit participants. In designing the interview structure consideration was given to the needs of the participants. Some people with a learning disability may have limited language skills and a difficulty in answering abstract questions leading to communication difficulties during interviews (Clarke et al. 2005). The interview schedule contained clearly structured open questions to assist understanding.

The interview structure was devised using the Canadian Model of Occupational Performance (Canadian Association of Occupational Therapists 1997) allowing for an occupa- tional focus on the areas of self care, productivity and leisure within the context of the participants’ environment. Data were coded and analysed using thematic analysis to understand the issues for these nine people who were currently managing to live independently. Each interview was audio taped and transcribed and the data coded into themes (Rudestam & Newton 2001). As the interviews progressed additional questions were added to explore emerging themes identified by the first participants.

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ª 2009 Blackwell Publishing Ltd, British Journal of Learning Disabilities, 38, 286–292

ª 2009 Blackwell Publishing Ltd, British Journal of Learning Disabilities, 38, 286–292

Trustworthiness was attained by formal supervision of the research project and by the sharing the data with an experienced mentor for advice. The interviewer kept notes to enable reflection on participants’ experiences.

Participants

There were five female and four male participants whose ages ranged from 33 to 56 years who were living alone and receiving minimal or no formal support at home. Six of the participants had moved out of residential care or more supported living, three had previously lived with partners in the community. For the purpose of this study, minimal support was defined as two visits a week or less by a paid carer to support that person to live independently. The study did not consider the amount of informal support from family, friends or other professionals outside the home.

Participants in this study were recruited by convenience sampling. A recruitment letter was disseminated to the researcher’s colleagues within the Learning Disability Service and related local independent sector. Suitable participants were initially approached via this third party to determine their interest in taking part. This form of recruitment has been shown to be effective when recruiting participants with learning disabilities (Melton 1998). An information sheet was designed with symbols to assist understanding and to make the information accessible for potential participants. An audio tape containing the same information was also made available. The consent form was symbolised to maximise understanding. It was explained to all participants that their confidentiality would be assured. Participants were given the choice to provide their own pseudonym, to further their active involvement in the research process and four chose their own.

Findings and discussion

The coded data from the transcripts produced seven main themes which reflected the views of all the participants; The themes were ‘feelings about living alone’, ‘practical issues’, ‘support’, ‘choice and control’, ‘vulnerability’, ‘health issues’, and ‘the impact of having a learning disability’.

Feelings about living alone

These included both positive and negative aspects of living alone with concerns about the future and being indepen- dent. They valued being independent and having time to relax. Most participants had chosen to live by themselves and associated living alone with feeling that they could cope with independent living.

Robbie, who had no close friends or relatives, also spoke of how he felt about living alone and how isolated he felt it can be:

‘It gets very very lonely. Sometimes I go to bed crying, cos I’m lonely. And people don’t understand how lonely you can get’ (Robbie)

When comparing living alone to living in residential care, participants said they preferred living alone; the reasons given included enjoying privacy, having their own space and feelings of freedom. These findings are similar to those of previous studies (Barlow & Kirkby 1991; Stancliffe & Keane 2000) whereby people in semi independent or independent accommodation expressed greater feelings of autonomy. This desire links to the aims of Valuing People (Department of Health 2001) and Valuing People Now (Department of Health 2009) as people with learning disabilities continue to ask for greater independence, including being supported to live independently.

Practical issues

These dealt with everyday concerns such as home care, money issues and neighbours. Other issues related to self care, tasks outside the home including shopping, transport and work. The participants related how they dealt with practical activities. The participants were independent with tasks at home to varying degrees and received different amounts of support. The majority of participants struggled with more complex aspects of living independently, such as money management and budgeting. There were no studies found directly relating to how people with learning disabilities feel about managing practical activities at home. Studies such as those by Hallgren & Kottorp (2005) and Melton (1998) demonstrate the importance of feelings of empowerment when undertaking daily activities. In the present study, the ability to manage practical tasks and the need for support with them were interrelated with the themes of support and choice and control. Attitudes to balanced occupations varied, for example Mark and Sarah both worked part time in different voluntary capacities.

‘I take the meals to the customers and I take the rubbish out, clear the tables…I love working there…’ (Mark)

In contrast, Celia, who had no regular day time occupa- tion commented about her daily routine:

‘It’s very boring…get up, wash, dress, breakfast, clear up. That’s about it.’ (Celia)

This supports the available literature linking positive day opportunities such as employment with increased levels of self esteem, motivation, well being and independence (Forrester-Jones et al. 2002; Reid & Bray 1998). It also reflects some of the frustration related by Anne, in her

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interview, when she had nowhere to go in the day time (Holman 2007).

Support

This theme covered the positive and negative aspects of receiving different types of formal and informal support and supporting others. The support that people described receiving was separated because the participants viewed them in this way; formal or informal support. All the participants received formal support to assist them to live independently. The majority of participants received two visits per week of tenancy support, to help them with practical tasks at home. Some participants received emo- tional support including attendance at mental health day units or counselling. Others received visits from community support workers to provide emotional support and to monitor their mental health.

They had clear opinions about the support they received and how this related to their perceptions of living indepen- dently. Most participants were happy with their level of support, but some people expressed concern that they were not given a choice in who supported them, or the time or length of the visit:

‘One I didn’t like very much. Alright but a bit bossy. ‘Come on, put your oven on!’ And I thought ‘here we go again!’’ (Maria)

Participants had varying contact with partners, family or friends. Several people spoke about receiving practical or financial support. The majority of participants mostly had friends who also had learning disabilities. The importance of having meaningful relationships with people who are not paid to support them (McVilly et al. 2006) is supported by the views of some participants in the present study who valued having support from friends, as well as the isolation felt by some of the participants who did not.

Choice and control

This theme covered positive and negative feelings and the perceived power of others. All of the participants had chosen to live independently and during the interviews this emerged as a major theme.

Perceived lack of choice and control

Although living independently with minimal support, most participants still felt as though they had to continually prove their right to live alone in the community. This lack of choice and the power of others, particularly those in authority, appeared to feature significantly in their lives. Topics discussed by participants demonstrated that they perceived a lack of choice and control; from things such as being

allowed to keep a pet (Kirsty), being moved without proper consultation (Jake) or having her children removed (Celia). This calls into question the fine line between assisting a vulnerable person who has limited cognitive ability and imposing restrictions upon that person to live within defined acceptable limits. It has been argued in the literature that in providing choice for people with learning disabili- ties, it is important that the professional duty of care is not

overlooked (Smyth & Bell 2006).

Feelings around being in control and having choice

Some participants had very positive experiences about being enabled to make choices for themselves. Mark was aware that he did not have to take any of the advice given to him about keeping safe and made his own judgements about whether he walked through the local park or not. Kirsty spoke of being aware that she did not have to listen to advice and could make her own decisions. Sarah felt that she was in control over the support she received and that she chose what to ask for assistance with:

‘Well I do it myself, if I want any help, they give me help with it...And if I wanted any help, they’re on the phone and that’ (Sarah).

Choice and rights were two of the key objectives set out in Valuing People (Department of Health 2001) detailing what people with learning disabilities wanted. It would seem from this study that there are still issues that need to be addressed in this area to enable people to truly feel they are enabled to make choices for themselves.

Vulnerability

People with learning disabilities are frequently classed as vulnerable (Clarke et al. 2005). The vulnerability of the individuals interviewed emerged as a major theme in the study. Although participants were asked about keeping themselves safe, they volunteered information about past and present abuse and how their vulnerability had lead to them experiencing difficult situations

All of the participants lived alone in inner city locations, some in areas known to have problems with drugs and high crime levels. Robbie, Maria and Jake reported that they lived next door to people who were drug addicts and this caused them problems in terms of not feeling safe, of being threatened and of anti social behaviour such as loud music. Both Robbie and Maria had experienced things thrown through their windows in recent months. Evidence found by Cooper (2002) supports the findings of the present study regarding the vulnerability of people with learning disabil- ities. Whittell & Ramcharan (2000) also identified the victimisation by others in a local community towards people with learning disabilities. However, it has been

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found that people are able to learn to keep themselves safer when given the right support to do so (Long & Holmes 2001).

Eight out of the nine participants interviewed talked of being subjected to abuse of some kind. Some of this was past recollections and some more recent. Bruce spoke of trusting someone who said they would be his friend and then stole from him. Celia was subjected to physical abuse and theft from her son. Robbie spoke about being sexually abused as a child and of being recently cheated financially and verbally assaulted. Kirsty was aware of how vulnerable she was when going out drinking alone and felt she was often taken advantage of sexually:

‘I’ve grown up with bad experiences…when I was younger and all the way up, even now. With people taking advantage of me, abused and raped.’ (Kirsty).

Studies such as those by Whittell & Ramcharan (2000) and Taggart et al. (2006) are pertinent to those living indepen- dently in the community. The findings of the present study support these as participants described their vulnerability and of how they had been taken advantage of and abused. There is also a strong link between vulnerability, abuse and lack of choice and control as studies by White et al. (2003) and Calderbank (2000) have demonstrated. Calder- bank (2000) suggested that community living and empow- erment policies actually contribute to increasing the

potential for abuse of already vulnerable people.

Health issues

This study was not designed to examine the health of the participants and there were no questions specifically asking about health in the interview schedule. However, in the course of discussing issues around support needs and coping, information regarding health was volunteered by the majority of participants. This highlights how closely linked issues around health were to living independently for the people interviewed.

A variety of health problems including asthma, diabetes, epilepsy and arthritis were experienced by participants. The main impacts of these conditions on living independently appeared to be around remembering and understanding the prescribed medication. No studies were identified directly relating to issues surrounding concordance with medication for people with learning disabilities living independently. However, given that cognitive skills such as memory and ability to tell the time are problems for many people with learning disabilities, the ability to take medication correctly has the potential to be a problem.

Several of the participants interviewed spoke of being reminded by support workers to take medication, although none of them were employing practical aids such as blister packs or alarms to remind them when to take a dose. The

ability to take medication and keep healthy was directly linked by several participants to being able to remain living independently:

‘If I don’t take my tablets and look after myself, people will be doing stuff like putting me in a home…and it will be their decision instead of mine.’ (Kirsty)

This links directly to the perceived lack of choice and control discussed by most participants. Some of them were worried about their independence ‘being taken from them’ if professionals thought they were not managing their health needs sufficiently. This could account for the lack of practical support being offered to participants in this study around taking medication. Similarly, a review of integrated care approaches for people with learning disabilities (Jansen et al. 2006) found there was a lack of published studies looking at the potential benefits to adopting a more integrated approach to treating the physical health needs of people with learning disabilities. In this study, eight out of the nine participants were accessing mental health services. Again, although partici- pants were not specifically asked about their mental health, several people volunteered information about their mental health support, in all cases this was because of a past abuse or a traumatic event. It is well documented that people with learning disabilities are more likely than the general population to have mental health problems (Priest & Gibbs

2004).

The impact of having a learning disability

Several of the participants spoke about what having a learning disability meant to them in terms of living independently in the community. Jake felt that the only difficulty having a learning disability caused him was with literacy. Kirsty related that aside from needing assistance with practical things like cooking and money management, her learning disability led her to being very trusting of others, which left her vulnerable. Robbie talked the most about the negative stigma of having a learning disability and how that had caused him to have major problems with harassment from his local community and lack of support and understanding from statutory services such as the local council and police:

‘Round here they don’t understand. I had one up the road…swore at me, told me to ‘go back to [mental health hospital], go back to your cage’…It’s really awful; I go up the street, someone’s taking the mick out of me. Awful.’ (Robbie).

The majority of participants socialised predominantly with other people with learning disabilities, and did not actively engage in local community activities. Social isolation such as this can lead to problems with self

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esteem and feelings of worth as well as a sense of powerlessness. (Jahoda & Markova 2004). Many partici- pants felt powerless in different aspects of their daily lives and were also receiving mental health support. Johnson (2003) uses a case study to demonstrate an individual’s perceptions of how understanding she was different from others resulted in a negative self image and led to low self esteem and stress.

Limitations of the study

This was a small scale study, completed within a limited time scale and therefore the findings cannot be generalised. Access was only available to service users who were known to the local service providers. Because of the time scale there was limited verification of the data; to increase the trustworthiness of the study, the researcher would have wished to share a symbolised summary of each interview with participants.

Implications for research

Because of the preliminary nature of this study, further research is recommended. Research exploring what is required to support and develop occupational performance during transition is also required if less able people are to make a move into independent living.

Conclusion

It is clear from the data collected for this study that the four key principles set out in Valuing People (Department of Health 2001) need to remain a priority for evoking change and improvements in service delivery. The findings of this study support this policy in that the people interviewed valued and desired greater rights, choice, inclusion and independence. Ways in which people can be helped to achieve these wishes include; improving support to enable increased social inclusion for people, getting the levels of support right for individuals, raising awareness of vulner- ability and increasing choice and autonomy for people.

The participants in this study related that they often have difficulties in their everyday lives and they can sometimes struggle to various degrees to manage their health, safety and to undertake practical tasks associated with indepen- dent living. However, when comparing their present lifestyle with alternatives, the participants were very clear in their desire to remain living independently:

‘I prefer to be independent…I’m happy, I’m happy learning the hard way’. (Bruce)

‘I prefer to live as I am…I’ve got my freedom, I can do what I want.’ (Robbie)

Acknowledgements

Thank you to the 9 people interviewed who talked so openly about their lives. Thanks also to the following for providing financial support for the MSc; Elizabeth Casson Foundation, The Collage of Occupational Therapists (Press- ilitt Care Fellowship Award) and NHS Plymouth.

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