BARRIERS TO INCLUSION: PROFESSIONAL ISSUES

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Introduction

This article aims to explore if and how health and social care professionals may create barriers to the inclusion of people with intellectual disability in society. Strategies to enhance interdisciplinary working relationships are reviewed, and some comments are offered on how these might apply to service provision for people with intellectual disability.

Inclusion

Inclusion is a ‘guiding philosophy for integrating older and younger people with developmental disabilities into the community’ and is therefore the inverse of isolation (Goldmeier & Herr 1999, 318–9). In the context of intellectual disability (ID), inclusion developed as a logical extension of Wolfensberger’s (1972) principle of normalisation. The operational mode of normalisation that has had the greatest influence in the United Kingdom, and possibly Ireland, is the ‘five accomplishments’ model proposed by O’Brien (1985) (see Figure 1 below). The five accomplishments represent a set of quality-of-life and human rights goals towards which people with ID who are also service users/consumers should be enabled to progress, and a series of baselines for the evaluation of service outcomes.

The values of normalisation and inclusion promote the belief that people with ID, regardless of their age, should have the opportunity to go through the same ‘growth-producing’ life stages as everyone else (Goldmeier & Herr 1999, 322). One way of operationalising this value is through enabling people with ID to access mainstream services, and it is current government policy to place emphasis on mainstreaming in the provision of services to people with disabilities. This policy requires that specific services for people with disabilities should be the responsibility of those government departments and state agencies which provide services for the general public. The principle underpinning policy is ‘to enable each individual with a disability to achieve his/her full potential and maximum independence, including living within the community as independently as possible’ (Department of Health and Children 2001a, 141).

The role of professionals in intellectual disability services

Various health and social care professionals work with people with ID, and each have been trained to expect to carry out certain roles, tasks and interventions relating to the care and support of people with ID and their families. These have developed and evolved over time in response to or in anticipation of international philosophical trends or restructuring of health and social care services, with each professional group and government believing that their policies are ‘right’ (Jukes 1995, 614).

Tyne (1992) describes how changes in the public policy on disability in the United Kingdom in the 1970s led to challenges to the medical influence over ID services by ‘newer’ professional groups such as nurses, teachers, social workers, instructors and psychologists (p.39). New problems give rise to new solutions and demands, which in turn lead to the creation of new posts or new development within existing professional roles (e.g. new nursing roles and titles have developed in response to shortages of other healthcare professionals or other types of nurses (Hill et al. 2002)). Professionals move into these posts or develop as required, achieving power at the expense of the lay person’s or service user’s autonomy and maintaining differences in their social status (Williamson & Danaher 1978, 177).

Barriers to interdisciplinary collaboration

Collaboration has been defined as ‘a relationship between two or more people, groups or organisations working together to define and achieve a common purpose’ (Hornby & Atkins 2000, 7). At service-delivery level, collaboration takes place between the people who need some kind of help and the people who provide it, and between the providers. Its importance varies from one helping situation to another, but it can be a key element in many methods of help, whether medical, social or psychological. However, ‘a disparate group of ambitious individuals, anxious to prove the worth of their particular discipline’ may find it difficult to work together (Tyne 1992, 39), let alone with rather than for their clients. The reasons for this are varied, and include: lack of awareness of the need for an integrated approach to care; ignorance concerning other agencies and professions; a restricted viewpoint on the part of a single profession or agency; professional terminology; lack of trust between professionals; professional rivalry; role insecurity (especially where organisational change is taking place); and personality factors (Hornby & Atkins 2000, 25–29).

Brown and Smith (1992) point to gender issues in professional collaboration, claiming that conditions in which men and women can care coherently for people with disabilities and for each other are rarely found in human services (p.166). They also claim that professional structures divide and disempower both workers and service users. Dalley (1988) takes this further, stating that those who perform the physical caring tasks (i.e. hospital and community nurses, care attendants, nursing auxiliaries, and home helps) are at the bottom of the hierarchy of professional interests in the provision of ID services (p.133). To alter their status would have repercussions on that ‘constellation of professions’ which have superior status (i.e. social workers, doctors, managers and administrators), and who tend to be male, at least at their senior levels (Dalley 1988).

Another example of a barrier to inclusion created by those who claim to have the best interests of people with disabilities at heart is illustrated in the following passage:

As institutionalised care has become stigmatised, the medical definitions that go along with it have come under fire too. And it is parts of the social welfare complex … which have sought to take over the direction of policies relating to the dependency groups. They argue that they are best suited to offer care to the chronically dependent precisely because they are not dominated by the medical model. But they ignore the fact of their own image as being linked to the deviant and the problematic. Thus there is an unfortunate polarisation. The medical definition of dependency (acceptable) tends to ally itself with the institutional solutions (unacceptable) and the social welfare definition of dependency (as problematic and therefore unacceptable) seeks to ally itself with the socially acceptable concept of ‘community’, which turns out to be based on privatised, familial-model type solutions. As a consequence, interprofessional and interagency disputes frequently arise over interpretations as to which of them can offer the best and most appropriate forms of care for chronically and heavily dependent people. (Dalley 1988, 142)

More recently Lord and Hutchison (2003) have described the move away from institutional services and professional culture towards an emphasis on self-determination and community involvement. They claim there is a dominant assumption that the best way to provide support for people with disability is to give money to agencies which in turn provide agency-directed services. The dilemma of agency-directed services is that provision of disability supports are generally developed by agencies and their paid staff, limiting self-determination and directions by individuals and their families. One Irish example of barriers between agencies and different groups of nurses was identified. Public Health Nurses (PHNs) are employed by the state to provide care for people in the community. Their caseload may include people with ID, but they can work in isolation from other community nurses such as specialist community ID nurses, who may operate within the same catchment area, but are employed by voluntary agencies (Hanafin, Houston & Cowley 2002).

A proposed solution to enabling people with ID to enhance their participation in the wider community and decision-making within their services is through advocacy and self-advocacy groups. However, as Williamson and Danaher (1978) point out, professionals may claim advocacy as part of their role (rightly or wrongly) and claim a ‘monopoly over the [advocacy] knowledge’ in order to maintain and encourage dependency (178). Advocacy groups may be set up for parents, relatives and carers of people with ID as a vehicle for them to express concerns about the level and quality of services available to their children (Brown, Orlowska & Mansell 1996, 225). However, parents’ advocacy groups may be in conflict with the interests of their children—e.g. where parents step in to block programmes of sex education or self-advocacy (235). Cooperation by advocacy groups with professionals is viewed as important because professionals can then refer potential members to the group and because self-help groups benefit from the support and credibility of professionals. Nevertheless, where groups are set up in cooperation/collaboration with professional agencies, they may be compromised should they wish to criticise service provision, or to extend the remit of the advocacy group beyond that which is acceptable to professionals. Therefore it is important for research to clarify what is needed to create new alliances between service user, parents and professionals.

Strategies for promoting interdisciplinary collaboration

The Department of Health and Children (DoHC) has acknowledged the existence of deficits in interdisciplinary working within the health services and stated that there is a need for improved collaboration between primary care services and specialist services such as ID services in order to create a ‘seamless’ service (DoHC 2001a; DoHC, 2001b). The department goes on to suggest that interdisciplinary continuing education may promote interdisciplinary collaboration. Barr (2001) describes how the interprofessional[1] education movement arose in the United Kingdom as a means to overcome ignorance and prejudice among health and social care professionals, so that they would work together more effectively to improve patient care and understand each other better, valuing what each brought to collaborative practice. He specifies people with ID who were being discharged from institutions and whose survival in the community depended upon ‘flexible, responsive and well co-ordinated support’ from community ID teams: ‘Rigid demarcations and hierarchical relationships which may have worked well in hospitals had no place in community-based services where boundaries between professionals needed to be more permeable.’

The DoHC does not elaborate on what it means by interdisciplinary education, but the literature on interdisciplinary strategies and projects reviewed for this assignment included formal continuing education programmes (Barr 2001), interprofessional workshops for community mental health teams (Reeves 2002) and an interprofessional training ward pilot phase (Freeth & Reeves 1999). Barr (2001) suggests that doctors are more likely to engage in work-based programmes, in settings where they are in positions of leadership, and less often in university-based programmes or programmes where they are expected to learn on equal terms with others (18). Reeves (2002), using a number of methods, evaluated a series of three workshops for two interprofessional community mental health teams, concerning interprofessional working and education. It was found that medical practitioners and psychologists were absent more frequently from the sessions than were community psychiatric nurses, social workers and occupational therapists, and overall the participants felt they had benefited from the experience, understood other team members’ perspectives and roles. Freeth and Reeves (1999) evaluated a four-week training ward pilot project for medical, nursing, occupational therapy and physiotherapy students in their final year of training. One key aim was to prepare the students to understand interprofessional and interagency issues around admission, care, rehabilitation and discharge of patients with musculoskeletal conditions. Overall, the students evaluated the experience positively, and patients were highly satisfied with the care and attention they received. However, the medical, occupational therapy and physiotherapy students felt the experience emphasised the nursing input into care. No similar Irish studies or studies pertaining to ID services were located, but one suggestion in the Irish ID literature for overcoming interdisciplinary barriers to co-operation concerned the holding of multidisciplinary journal clubs in order to promote a multidisciplinary focus, sharing of information and networking (McKeon 2003).

Discussion and conclusion

De-institutionalisation, community living and inclusion of people with ID in society are viewed positively, and while some individuals will require long-term, specialised care and service provision (Mulvany 2000), generally people with ID are expected to be able to make use of mainstream services. People with ID who live in institutional settings are dependent on the decisions of health and social care professionals about the level of social inclusion they experience and the extent to which they are allowed to participate in the decision-making process. The extent to which different professionals and agencies co-operate and share knowledge can also affect the quality of life of people with ID. However, a number of writers have criticised professionals in specialised ID services and mainstream health and social services for failing to work collaboratively for a number of reasons.

Interdisciplinary education for health care professionals is seen as part of the solution to the problem of interdisciplinary collaboration within the health services, but the small amount of evidence presented appears to indicate both the strengths and weaknesses of interdisciplinary education in the short-term. Furthermore, this evidence is not specific to ID service provision. ID service evaluation models and reports (Cocks 2002; National Disability Authority 2003; Cope 2003) focus on the service as a whole, rather than on interdisciplinary relationships as indicators of quality of service. Perhaps this is correct if it prevents discord among professionals. However, further study on interdisciplinary relationships within ID services in Ireland, using appropriate evaluation methods, might provide further support for those seeking to improve service provision for people with ID.

[1] The term interprofessional is used where it is the preferred term of the author(s) cited.

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