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CHAPTER EIGHT: EXPERIENCES OF OTHER SERVICES
8.1. This chapter summarises some additional literature relating to a range of service provision. In no case was there sufficient information in any one area to warrant a separate chapter. Each section emphasises the specific barriers experienced.
Housing
8.2. There are still a large number of adults dependent on AAC technology living in residential care institutions ( AAC 2000). Likewise recent literature concerning adults with learning disabilities in England shows that 50% of adults were living with their parents, 12% were living with other relatives while 7% were living on their own or with a partner. Of those adults living in supported accommodation the vast majority reported having no choice over either who they lived with or where they lived. Furthermore, 39% of this group reported a lack of privacy. Those individuals living alone were more likely to live in socially deprived areas, and 32% of this group reported not feeling safe in their home, local area and using public transport (Emerson, Malam, Davies and Spencer 2003/4). Broach (2003) documented similar experiences in accommodation among adults with autism. Those adults living independently were more vulnerable to abuse and exploitation. One individual reported being mugged four times shortly after moving to their home. Another individual reported constantly changing electricity suppliers every time another sales representative visited.
8.3. A minority of carers reported having a discussion with a professional concerning current or future housing options. Only 7% of individuals with a diagnosis of high functioning autism had been contacted by professionals to discuss housing. This would imply that suitable accommodation is still not a priority in transition planning (Broach 2003).
Travel
8.4. Travel can be of the routine day to day variety or can relate to travel abroad for holidays. In the former category it is clear that, for many, their employment prospects are at least in part, determined by their ability to use public transport or to drive. This is particularly true of those with visual impairments but is also true of those who have to negotiate their way on public transport:
"I live in a rural area and since I can't drive, I face a much tighter job market because of my inability to travel long distance easily"
(22 year old man, unemployed, partially sighted)
Salomone and Paige 1984 p.151
8.5 The increasing number of people with learning disabilities in the workforce means a higher level of demand for transport services carrying people with severe difficulties to and from work. For some this means obtaining a driving license, for others it is a question of learning how to negotiate the public transport system, which can prove frustrating (Reid and Bray 1998). In a recent survey of services to autistic people in Scotland well over half of carers said that public transport was a problem and a quarter indicated that it was very difficult to manage (Broach 2003). There was a general lack of public transport options, especially away from the main population areas. Individuals in this group experience a range of difficulties in using public transport, including: bullying, understanding timetables, and low confidence in their communication skills. Many people found accessing this service stressful, so tended to avoid travelling especially at peak times. Crowds were the biggest problem for many. Carers reported that public transport triggered behavioural difficulties or anxiety/panic attacks, and that this exacerbated the social exclusion these families experienced. For example, extreme anxiety can be created by queuing, by having the right change available and negotiating payment with a queue behind, by delays in the service, by overcrowding and excess proximity and finally how to make the bus stop and where to get off. Of those individuals with Autistic Spectrum Disorder that could cope with public transport, very few received discount fares, with only 21% reporting that the person in their care had a freedom pass or other concession.
8.6 The following example illustrates the impact of employee attitudes towards CSN, on this group's experiences of public sector services, in particular a lack of awareness on the part of service staff of the varied nature of communication difficulties.
In this example a man with a laryngectomy went to get some information (at a railway station) and had to use a Servox to amplify his speech. The operator started laughing and said to someone to come and listen to this.
Knight, Sked and Garrill, 2003 p.17/18.
8.7. One area which has become especially salient with the increase in on-line booking is the accessibility of websites. This has led to a number of ground breaking cases in the US about the extent to which company websites are compliant with disability legislation. In one recent paper the issue has been taken up with regard to the visually impaired population (Mills 2006). The paper reports a law suit against Southwestern Airlines in the US in which the plaintiff maintained that the airlines site was inaccessible because it was incompatible with his screen reader. The case was lost but there is every likelihood that other cases will proceed as the software available to individuals becomes more sophisticated.
Leisure
8.8. There is relatively little in the literature about the leisure needs of people with communication support needs. It may well be that these types of activities prove less of a problem because people find their own ways of engaging with such activities and choose activities which do not challenge their needs. For example, Hayhow and colleagues (1999), writing about the experiences of people who stammer, found that social lives were less affected by their communication disabilities than employment, school etc and other contexts in which the individual engages with the expectations of another element of society.
8.9. Of the limited literature available regarding the leisure activities of individuals with CSN, parents and carers of individuals with autism reported that the person they care for could access play/leisure facilities, however 18% of this group reported that this access was restricted to disability/autism specific groups. There was one example where a parent reported that their child was excluded from the local sports club for disabled people as this disability was not physical (Broach, 2003).
8.10. In Hayhow's study (2002), adults who stammer avoided leisure activities that involved social interaction e.g. one person reported not going to night school classes and specifically choosing activities that do not involve talking. However, some individuals felt that this aspect of their life have been more affected in their early years and that they began to be more involved in leisure activities as they get older.
8.11. "Talking mats" have been used as a means of eliciting the views of a variety of different groups of people with communication support needs about their environment and aspects of their life. In one study specifically targeting the frail elderly Murphy and colleagues successfully elicited the opinions of a group of people living in care homes to their environment, in particular how they like to spend their time (Murphy et al. 2005). The people involved in this study had CSN as a result of Parkinson's disease, stroke and dementia. They expressed an interest in a range of leisure activities such as shopping, concerts, bingo, listening to music and reading.
8.12. Much of the material reviewed refers to people with CSN's experiences of barriers to access across areas such as employment and healthcare. However, individuals with CSN may experience barriers in other areas at a personal and interpersonal level. One study reports on people with aphasia experiencing barriers to maintaining social relationships with friends as a result of their communication needs. Individuals who participated in this study also reported a loss of self identity and that they could no longer fully participate in groups that they belonged to previously such as their religion, culture or peer group (Parr, 2007). Evidently these barriers to participating in these areas will prevent the person fully accessing social and recreational services within the community and leading a social life.
EXPERIENCES OF OTHER SERVICES - KEY POINTS
Problems identified
- Clearly the difficulties experienced identified in the earlier sections are repeated across a range of services. Indeed there is probably less understanding in services which have less of an emphasis on communication skills
- No one study has addressed the experiences of the range of CSN across different services. In the main the reporting reflects the experiences of specific groups with specific services
- Nevertheless it is clear that the experience of having a communication support need has far reaching implications for accessing a whole range of services
- Many of the experiences reported are associated with the experiences of disability more generally and may be mediated by but are not confined to the individual's communication.
Potential for improvement
- There is little evidence from the literature that those providing the services identified have identified people with communication support needs as being of concern.
- There are probably some fairly straightforward modifications that can be made to the way in which materials are produced which would help people with communication support needs. For example having information available in a variety of formats would be relatively easy to achieve.
- There will undoubtedly be some implications for most of these services from the Disability Discrimination Act but as far as it is possible to ascertain from the literature the implications of this legislation have yet to be felt, at least in so far as it has a bearing on people with Communication Support Needs.
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