The Receiving End of Learning Disability Services: Between Individuals and Families

Monique Lhussier, MSc; Catherine E. Gibb, PhD, PGC Disability Studies, BSc (Hons); Charlotte Clarke PhD, MSc, PGCE, BA, RN; Christopher Minto MSc, LLB (Hons), PGCE, RN; Anthony Perini MB, BS, MSc, FRC Phych

Abstract

By studying either the experiences of people with intellectual disabilities or those of their carers, researchers have compartmentalised often intricately linked lives. In this qualitative research study, semi-structured interviews were conducted with people with intellectual disabilities and/or their carers. Services for people with intellectual disabilities often failed to offer equal access and sometimes further alienated people. While some families were able to develop effective partnerships with services, others felt misunderstood. They, as family members, had a unique knowledge of the person they were caring for, which was rarely acknowledged, let alone utilised by services. As a result, families and services worked on different knowledge bases, which was translated into different approaches to independence and risk taking. All the people interviewed were adults, sometimes cared for by aging parents who occasionally also suffered from disabling conditions. This 'family life cycle' was not often taken into account in the planning of services, which tended to be delivered either for the benefit of the person with intellectual disabilities or his / her closest carers. Yet, people with intellectual disabilities live in a caring environment with which they form a coherent and particular whole. This should inform the development of more efficient, personalised and holistic services.

Keywords: learning or intellectual disabilities , family life cycle , service provision , caring networks , expert-parent

INTRODUCTION

Since the 1970s, the social model of disability, by focusing on the ways that society and societal structures disable people, has been opposing the impairment focus of the predominant medical model¹. However, it is only in the last decade that services have seen a slow move towards life change and participation of people with intellectual disabilities². Concomitantly, people with learning difficulties have been featured prominently in policy documents in the United Kingdom, but their own voice is only just beginning to emerge in research studies concerned with their views and experiences³.

A literature review of autobiographically based accounts of people with intellectual disabilities⁴ highlights many aspects of their life experiences. This review emphasised the common humanity in their daily lives, much like the rest of society^{5; 6}. Adults preferred to live independently, in supportive, but non-restrictive environments⁷ but were often marginalized from their communities and denied access to respected social positions, rights or privileges^{5; 8; 9}.

In contrast with people with intellectual disabilities, there has been a long tradition of including carers' voices in both policy and research papers. The latter have tended to focus on either mapping and assessing levels of service use, or on the lived experience of caring and the notion of care giving¹⁰. The Carers (Recognition and Services) Act of 1995¹¹ gave all those who provide 'regular and substantial care' the right to an assessment by a local authority of their ability to care and to continue caring¹². Although implementation of the Carers Act is reportedly patchy¹³, there has been continued Government interest in improving support to carers, leading to the National Carers Strategy¹⁴.

However, by studying either the experiences of people with intellectual disabilities or those of their carers, most researchers have artificially compartmentalised often intricately linked lives. The methods of assessment currently used are predominantly based on a risk paradigm that may pay insufficient attention to family strengths and support networks, and therefore lead to unnecessary or inappropriate professional interventions.

The data reported in this paper was collected as part of a research study commissioned by a specialist learning disability NHS (National Health Service) Trust in the northeast of England. One of the aims of the study was to establish the patterns of need and service utilisation of people with intellectual disabilities and their carers.

METHODS

This research drew on phenomenology and critical theory approaches to enquiry. Semi-structured interviews were conducted with people with intellectual disabilities and their carers, around the broad themes of social networks and service provision. Interviews were set on a conversational mode, and the schedule kept flexible, so that if people felt more inclined to talk about a particular theme, they felt supported to do so. An inductive data analysis method was used in order to conceptualise the issues relating to living with a learning disability and receiving services. The study received ethical approval from the local research ethics committee. A process approach to consent was adopted, in which verbal consent was secured during the recruitment process and written confirmatory consent secured immediately prior to the period of data collection.

Sampling

The local Social Services database was used to provide a sampling frame to identify service users and their families who could subsequently be interviewed. From the 709 people registered in the database, 50 people were selected. The sampling frame took into account three main parameters: living arrangements, degree of learning disability (as assessed by their care manager) and geographical location.

The care managers of the fifty people short-listed were contacted to check for appropriateness of timing for contact by the research team, for example so as to ensure that they were not unwell or recently bereaved. Eleven people were excluded from the study as a result of this process. Letters of invitation for service users and carers were sent to the remaining thirty-nine people. This was followed up by a telephone call from a researcher, during which a further nine people refused to take part in the study. Thirty people with a learning disability and their families ultimately participated in the study. Where possible, the person with intellectual disabilities was interviewed face to face in his/her own home. When people were not able to speak for themselves, or if it was deemed unsuitable by the care manager or the family carer, the closest carer was interviewed. A total of thirty-five interviews, lasting approximately one hour each, were conducted, each one being audiotaped. The interviews were semi-structured around the themes of daily activities, family contacts, friendships, life choices, perceived services input, access to primary and secondary health care, carers' health and support to carers. Nine people with learning disabilities were interviewed on their own, and so were three unrelated carers. In five cases, the person with learning disabilities and his/her carer were interviewed separately (resulting in ten tape recorded interviews), and in thirteen cases, they were interviewed together. The data extracted for this paper focuses on service provision and the lived experience of receiving services.

Table 1: Demographic characteristics of the sample

Characteristics		No of participants
Gender	Male	16
	Female	14
Accommodation	Living with family	11
	Living with official guardians	1
	Residential care	9
	Sheltered accommodation	3
	Living independently	6
Estimated degree of learning disability	Mild (sometimes associated with challenging behaviour, Down's syndrome, mental health problems or fragile X syndrome)	16
	Moderate to severe (sometimes with a history of head injury, or associated with Down's syndrome, challenging behaviour autism or cerebral palsy	14

Note - these definitions were generated by the care manager to provide the research team with an indication of people's level of disability. They were, therefore, entirely subjective and not based on any recognised definition of the terms.

ANALYSIS

The 35 interviews were transcribed verbatim and the transcripts categorised. The inductive mode of analysis adopted allowed research findings to emerge from the frequent, dominant or significant themes inherent in raw data. Studying the transcripts repeatedly, the researcher developed emerging themes and continuously matched possible meanings to these themes. In this way, theory and data informed each other at every stage, and analysis was considered complete when new themes were no longer being generated¹⁵.

RESULTS

Categories emerged, from trying to make sense of the meaning of life, life choices, interaction, integration and self worth in the interview transcripts of each individual. They were grouped in four concepts for the purpose of this article: 'Service provision', 'Whose knowledge?', 'Caring network and the life cycle', 'What independence?'

Service provision

Services were seen to have been created as a solution to social exclusion. They were, in the eyes of the people interviewed, primarily centered around social services, care management, Adult Training Centres and respite care. In these mainstream services, people at both ends of the spectrum of learning disability (people with special and complex needs and people with uncomplicated mild learning disabilities) seemed to find it difficult to have their needs met.

"There's nothing around that's right for [my son]." [Mrs. S]

Service users described a rather paternalistic and dictatorial model of service provision, which had a potential for failing to acknowledge individuality.

"Every [respite] place I've looked at it's just not been suitable. I mean... Fair enough I've got disabilities, but there's nothing wrong with me, right, and every place I've looked at is like being put into prison... Can't get a cup of coffee when you want. Got to go to bed at a certain time. Can't have a telly in your room. Can't go out and have a cigarette." [Ms. AA]

Although regular review meetings were initiated in an effort to involve people in their own care, this goal was not always achieved:

"[During the review] they talk about things what I've done. What things they think I should do." [Mr. X]

Carers described services that responded to crises, but which rarely took proactive preventative action.

"Have a plaster on your leg, you're in the system... That's how it works. They've got to see you have something wrong with you." [Mrs. P].

In the eyes of people with intellectual disabilities and their families, services revolved for a great part around their care manager. They were often described as highly reliable people:

"[My care manager]. He's nice. I wouldn't like anybody else. [...] Because he does his best for us." [Mr. X]

However, these unique relationships could be counterproductive, as people could feel let down when their care manager was not able to spend enough time with them. Mrs. V recalls a time when the care manager's frequent and lengthy visits would give them a real chance to get to know the person and be an appreciated help in everyday life matters:

"[My daughter] feels neglected. A few years ago I suppose there was more money and what have you, but she use to have a carer [who] use to come twice a week and spend an hour each time with her. Well now [...] she comes maybe once a fortnight; if she's lucky she stays about 10 minutes, quarter of an hour and that's it. [Mrs. V]

Care management often lacked continuity. People spoke of care managers being on sick or maternity leave, not coming back, not being replaced, or the post filled only temporarily.

"[My daughter's care manager] went on the sick... she was coming back, and then it was just she didn't come back and then it was waiting for a replacement which has never ever appeared either. We had a very temporary one, and they couldn't really do much." [Mrs. AA]

Care managers were described as very dedicated, but hampered by under-funded, slow administrative organisations. People felt that there was a lack of responsiveness to their suggestions. There was not the co-operation they would have hoped for, for the benefit of the person they were looking after:

"When we have this annual review, I always go and I always feel a bit disappointed that we talk about things and yet, the next thing when we go back, nothing seems to have happened from year to year. [...] I don't think they seem to be pushing in the same direction at times." [Mr. S]

People either described the Adult Training Centre as an enjoyable place to go, with committed members of staff, or as a place where there was no continuity in staffing and where the activities on offer tended to be inappropriate. Respite care was often described as a desperately needed service, of which the quality could be largely improved. It was also perceived as a rather expensive option.

"[Respite care] well that's all very fine. We sent [our son in respite care] to see if he liked it, he went four days and it was £250 and we worked out that if he had respite care for a fortnight, [...] it was going to be well over a thousand pounds, well we could have taken [the whole family] on holidays for that." [Mrs. V]

"Episodes of respite care were also described as negative experiences where ill-equipped facilities were provided and where personnel were ill prepared to cope with challenging behaviours. Mrs. Z described how the personnel of one respite care service, "who are supposed to be able to cope with any problem at all", had to request that she pick her daughter up after just two hours because "they couldn't cope."" [Mrs. Z]

Whose knowledge?

Services and carers often had a different knowledge of the person with a learning disability, and of their possible understandings and needs. These different sources of knowledge and understanding were not often reconciled in the process of service provision. On occasions, particularly in residential care, services had come to substitute for the family in the eyes of the person with a learning disability. In other cases, carers felt they were working in a sort of caring partnership with services, but there were unfortunately more examples of parents feeling misunderstood, unsupported or ill-informed. Parents often felt they had developed some expertise over the years they had spent bringing up a special child. This notion of 'expert-parent' was not often acknowledged or utilised by services, as their knowledge was often disregarded. For example, Mrs. Z explained how staff failed to use the strategies she had suggested to manage her daughter's behaviour:

"We've told them [...] that one thing that you must not do is lose eye contact. Once you've lost eye contact, you've... lost all together. Now they say they do this, they try not to lose it but they do... Then they can't cope." [Mrs. Z]

Parents of people with very complex needs, like Mr. and Mrs. C, often felt unsupported or misunderstood by services, having to either fight or be absolutely desperate to access suitable services. In the next quote, Mr. and Mrs. C reinforce how difficult it was for them to justify their choices and how they occasionally found services unresponsive to their particular needs:

"We really had to fight for this place again last year. [...] [our son's] social worker, who has been excellent, didn't realise the need to get him a place as soon as he got it... you've always got to be firm and know what you want, know what's out there and what [our son] needs most... You've got to know your facts before you approach people, really." [Mr. & Mrs. C]

Professionals were regarded sometimes as quick to criticise, as in the case of Mr. G, but particularly slow to provide useful answers.

"Every time someone comes, they will say 'you're not allowed to lift [your son].' [...] So I use to say 'I have got a handicapped child. How do I go on with him when I am on my own?' 'I'll get back to you'. They never used to come back to me." [Mr. G]

Carers frequently felt that when they were doing things by themselves or apparently coping well on their own, they were largely left unsupported and often felt they were taking on responsibilities that should not have been theirs:

"I shouldn't have a hassle to get a wheelchair for somebody who's had one for nearly ten years... "[Mrs. P]

For some parents, services were solely taking the form of a yearly bureaucratic exercise:

"The only time I ever see anybody is at [our son's] review once a year. That's to do the paperwork and get everything ready." [Mr. S]

Caring network and the life cycle

Carers often live their lives around the person with a learning disability, sometimes for a lifetime. People had developed coping strategies and a degree of reciprocal dependency with the person for whom they cared. Parents of disabled adults often had their own healthcare needs and expressed great concerns about the future. This life-long parenting exercise was sometimes characterised by a tendency to overprotect the person cared for, as well as by feelings of guilt and responsibility. Mrs. AA put into words many other parents' feelings towards their children:

"I love her but I hate living with her."

Living with a child with an autistic disorder was not only difficult to cope with, but also radically changed Mr. and Mrs. C's outlook on life:

"It's difficult to live with somebody like that. It's near impossible. I mean as years went on it was impossible. [...] I think it's totally changed our life, we look at things differently." [Mr. & Mrs. C]

Many people expressed a profound attachment for the person they were caring for, and a sense of interdependency emerged in the interviews.

"Really, I'm not fussed [about respite care] because we take them with us and they all join in as a happy family sort of sense. We enjoy ourselves that way." [Mrs. V]

Mrs. AB described how her son, who has a mild learning disability, helps her care for her husband, who suffers from a long term debilitating illness.

"Usually if my husband is in respite you know, then [my son] and I go on holiday or something. Just to get away from it. [...] well [my son] is not quite so bad, you know [...] I think [he] and I are good friends, aren't we?" [Mrs. AB]

A strong message from carers was about the ways in which they worried about the future. Parents often considered their son or daughter with a learning disability as an 'ever-child', as somebody who will forever need them to be present at their side. For example, Mr. and Mrs. V looked after their son, their daughter, and their grand daughter. They described how they have planned and prepared for them all to stay together in the parental home in the future, hoping that they will get some external support to allow and sustain the situation. They have no way of reassuring themselves about their children's future.

"Well it worries you what's going to happen when you're not here. [...] Everything we have done to the bungalow, we've done it for the purpose of looking ahead to when we're not here." [Mrs. V]

Mr. and Mrs. C had also devoted a large part of their life to keeping their son in the family home, but finally had to decide to place him in a specialist facility. They were very conscious of the complexities of his condition, and were unsure about how he would be treated once they could not oversee his care any more.

"The best place for [our son] is where people know him and he can deal with that, and the biggest fear that we have is that wherever he is, they cannot cope with him and he'll end up in [...] an institution somewhere on lots of drugs and that's still kind of in the back of your mind. Because he is so difficult." [Mrs. C]

'The carer' was often not a single person, but rather a network of people sharing the caring role.

"[My son] has had the support of so much of the family, he just spreads himself thinly. I'll come in and he'll have things on the calendar where he's invited himself to different places, he'll just go!" [Mrs. S]

Similarly for Mrs. Q, family members had relayed each other in a continuum of care that stretched over several years.

"[After my mother died] I was living with my other sister, but my other sister died and I had to come to [this sister]." [Mrs. Q]

However, in some cases one member of this caring network can become unable to exercise his/her caring role, putting the whole group in a precarious situation.

"[My daughter] used to be wonderful to go to my mother's but my mother is... getting very peculiar [...] the arguing and the stress is just unbearable so I try and keep the two separated..." [Mrs. AA]

Some people with intellectual disabilities have sexual and marital relationships; they occasionally start a family, and as a result have to deal with the dilemmas and responsibilities attached to parenting. This involves developing their own values and beliefs about parenting:

"I don't believe in hitting children." [Mrs. F]

Families react differently to the birth of a child with intellectual disabilities and people's experiences of familial relationships vary from total rejection to adaptation and total integration. Having a child with intellectual disabilities and challenging behaviour could result in parents developing paradoxical feelings. While Mr. AA refused to place his daughter in residential care, he did not take a great part in her care:

"Except in crises if [my daughter] has to go to hospital then [her father helps out] ... but normal day to day he doesn't even talk to her." [Mrs. AA]

Family rejection was sometimes dictated by social pressure, or by the belief that anybody out of the norm should be segregated:

"[My niece] says I've got a mental illness and I'm an embarrassment." [Mrs. Y]

In some cases, the dysfunctional nature of a family might have exacerbated the lack of family support for the person with a learning disability:

"My mam died when I was four and my dad sexually abused us when I was two so I've never lived with my mum and dad. [...] I did have a brother but we don't know where he is." [Mrs. F]

In others, the disability might itself have exacerbated abusive or neglectful relationships:

"[When I was young] I had to find a place to live, nobody wanted us, my mother didn't want us... I loved her much but I still miss her." [Mr. N]

What independence?

For many of the people interviewed, independence was about being considered as a person; it often meant wanting to leave the family environment or to do as much as possible for oneself. People did not want to be patronised, but to be supported in achieving things that they could not quite manage on their own:

"I was in a place in [...] and they wouldn't let us change [my catheter] myself. They wouldn't even let us fill the bath... Why not? I don't like to be classed as disabled... I like to be able to do everything I want. [...] I say, if you're capable, let you!" [Mr. X]

Similarly, Mr. N took pride in looking after himself without help:

"Oh I like it. If anybody is doing it for us... I don't like anybody doing anything for us... I like to keep doing it myself because I'm old enough. If... just say if I was a five year old, that would be different. But I'm 63 now!... If a fella at 63 can't look after himself, there's something wrong!" [Mr. N]

People felt strongly about work or work-like experience, often wishing to be in employment, and seeing it as a milestone toward becoming more independent. Asked whether he could think of anything that he would like help with, Mr. B identified employment:

"Not much [...] one thing. Work."

Providing for individuals' needs of independence requires not only a detailed understanding of the individual but also a flexible approach, often difficult to implement at a service level. Services were seen as being risk averse, and were sometimes obstructing independence. Some people described their frustration when their son or daughter had not achieved as much as expected and seemed determined to reverse the trend, for the benefit of the person with intellectual disabilities as well as for the rest of the family. By raising the level of expectation, people hoped that the individual would respond positively and continue to expand his/her activities.

"I basically leave [my daughter] to get on with a lot of things now. I feel she's old enough to cope... I think at 21 [she] needs to accept a little more responsibility for her life." [Mrs. P]

DISCUSSION

Interdependencies in families and support networks

Parents described the paradoxes they felt about their caring role, simultaneously bringing about gratifications and difficulties or anxieties for the future. However, discussions about caring are self-limiting. We need to move beyond notions of care-giving and care-receiving if we are to understand the reciprocal nature of interdependency in families and communities. If we focus only on the care-receiver, then we immediately throw a boundary around the scope of service interventions. We frame the individual as the receiver of services and the location of all problems¹⁶, and we fail to engage wholly with what Brechin¹⁷ describes as the enabling and disabling processes in society. Indeed, the data evidences how carers, at times, knowingly compromise their own well-being in order to maintain the individual within the family unit. Tobin¹⁸ refers to older parents of people with intellectual disabilities as 'perpetual parents' because they have not finished, and may never complete 'launching' their offspring towards a more independent life. They are seen as potentially threatened by this unfinished business as life cycle nears its end. Health care practitioners and researchers have, for decades, highlighted this as the burden of caring that they must seek to ameliorate (through day care for example). Yet more recent work supports the notion that caring is also accompanied by satisfaction and brings a sense of intimacy and assertiveness, despite individual cost^{18; 19}, and that family quality of life is quite different from individual quality of life.

Receipt and delivery of services

The creation of services for people with intellectual disabilities in England, as in the USA and Scandinavia, was based upon the principles of normalisation in order to move away from the previously established models of care through segregation and institutionalisation²⁰. However, the different knowledge bases of practitioners and individuals and their families result, at times, in an exacerbation of the differences of framing need and service response between services and families. The 'person' knowledge that resides predominately with individuals and family members challenges professional practice²¹. At times, the receipt of services was seen to be more trouble than it was worth. The availability of services was described as unpredictable, as episodes of respite care were sometimes cancelled at very short notice, jeopardizing important family plans. Although services may have been stable, the staffing of it changed, and this lack of continuity was seen to compromise the benefit of the service to the family. This transience of professional presence prevented services acquiring any depth of 'person knowledge', maintaining the gap between service and family views of needs, risks and service provision. Some services also proved to be costly and added a burdensome level of bureaucracy to peoples' lives. In addition, services were not distributed according to need but in relation to perceptions of ability to cope. Consequently, those with a high level of intervention tended to be able to access further service support more easily than those who received less care. People and families responded to the available services in a variety of ways. Repeatedly, people indicated that services were not responsive to individual need. On the other hand, many people indicated that they tolerated services and some welcomed intervention and gained benefit from them.

'Valuing People'²² describes care management as starting from what an individual wants and how this can be achieved, rather than what services are available. Yet Chappell²³ wrote of the normalisation model, which has had a profound effect on service provision, as having a clear focus on services. Indeed, the challenge is to reorient service provision to the needs of people.

Services from the perspective of the family

Relatively few UK studies have, to date, looked at the effectiveness of models of service provision from the perspective of the family. This study adds biographical data, narrative and anecdotal accounts of the lives of people with intellectual disabilities to the existing literature. These should be analysed in the light of family systems frameworks²⁴. As a system, the family is a unified whole consisting of interrelated parts. It functions according to a set of defined rules, processes information, and adapts to changing circumstances with the intent of preserving balance among its parts. However, this analysis of the data would be incomplete without considering the dynamics of unpaid support networks or family systems from the angle of family life cycle theory. Grant & Wenger²⁵, in describing the family life cycle theory, force some consideration of intergenerational relationships and of changes in family reciprocities over time, as children grow into adults. How families 'launch' their offspring towards other lifestyles away from the family home is still not well understood. Services need to understand and assess each individual situation within support networks in order to allow a preventative or responsive approach to possible alterations in the capacity of families to continue caring and coping successfully.

Unfortunately, this absence of 'whole family systems' approach seems to be symptomatic of the contemporary reductionist approaches to care provision in the UK. Even in the most recent policy papers (e.g., 22), the application of rights, independence, choice and inclusion of people with intellectual disabilities is not linked clearly to the key action points identified for supporting family carers. In addition, there does not seem to be a framework to guide the assessment of family needs or to identify ways in which to strengthen and enhance family care.

CONCLUSION

This study adds biographical accounts of people with intellectual disabilities, and sheds light on family versus service knowledge bases and on the existence of caring networks, and family life cycle processes. In order for services to provide truly person-centred planning, there is a necessity for these processes to be understood more thoroughly. This would allow an integration of family structure, family life cycle and coping mechanisms into care plans. Lives are intrinsically intricate, and mechanisms must be considered as a whole in order to inform a more efficient, personalised and holistic model of service provision for people with intellectual disabilities.