Scottish Government

CHAPTER SIX: EMPLOYMENT AND FINANCIAL SERVICES

Background

6.1. The employment of people with disabilities has been on the agenda for many years and has been the subject of a wide range of legislation. It has long been recognised that the attitudes of employers are a key issue (Whigham and Mattson 1969). In many ways the issues are more straightforward when the nature of the disability is explicit. For example it may be easier to put facilities in place to improve the employment opportunities for those with a visual impairment than it is to provide for the needs for less apparent communication support needs.

6.2. While many individuals with CSN will seek and find employment there will also be numbers within this group likely to rely on financial assistance during periods of unemployment. Therefore this chapter will also consider people with CSN's access to and experience of financial services.

Barriers

6.3. Broad workforce issues are relevant to the discussion. Major unemployment such as that experienced in the UK in the 1980s is likely to have a differentially negative effect on the employment prospects of someone with CSN. But with increased employment greater opportunities arise as long as they are in the right sector and do not place too much pressure on the communication skills of the individual concerned.

6.4. It is common for people with CSN to experience difficulties finding work. For some this may be partly a function of their confidence in interview situations or in expressing themselves on paper during the application process (Klein and Hood 2004). They may be particularly poorly suited to the type of "communication" focussed job which has come to play such a large part of the employment opportunities currently available.

6.5. While this is true for all people with communication disabilities irrespective of whether they are going back into the labour market or renegotiating their terms of employment following, for example, a stroke, it is particularly sensitive for young people entering the labour market for the first time. When they have little to offer in terms of experience their communication skills and confidence are likely to make the most difference to whether or not they obtain work. This has proved to be a major problem for young people with developmental language difficulties as they leave school (Stone 1992) and the same is true of a wide range of other groups of young people entering the increasingly "communication focussed" labour force.

6.6. It has been suggested that about half of the disabled population are unemployed (Riddell and Banks 2001). Although it is not quite clear how the population with CSN overlaps with this group it is likely that most people with learning disabilities would be seen as having communication support needs of one sort or another. There is a major concern about the growing number of people claiming incapacity benefits against a background of increasing employment opportunities in the population as a whole. This appears to be particularly true in Scotland (Riddell, Banks and Tinklin 2005). This is probably off-set by an increasing number of people with learning disability entering the workforce. This clearly has all sorts of positive benefits in terms of increasing independence and contributing to the economy, but it can lead to its own complications as far as the individuals are concerned as they have to learn to negotiate all the other aspects of public life that accompany employment. For example, getting to and from work can be problematic for individuals with autism. Those individuals may experience anxiety in every day situations such as queuing at the bus stop, negotiating routine mechanisms such as getting on and off the bus and coping with delays (Broach 2003). For people with more marked needs the experience of going into work may be rather better than it is for those with less identifiable difficulties. For example, from interviews about employment with a group of people using alternative and augmentative forms of communication the majority of respondents reported satisfaction with their job duties, immediate supervisors co-workers and current salaries. The real problem for this group was the sizeable proportion who were dissatisfied with their opportunities for progressing (Light, Stoltz and McHaughton 1996).

6.7. The largest single review of services for people with learning disabilities, carried out by Emerson et al. (2003/04) interviewed 2898 people with learning disabilities about a range of experiences and access to services. A quarter of the interviews were carried out solely with the individual with learning disability, the rest were accompanied by a support person. The youngest person they interviewed was 16, the oldest 91, and half the people were under 30 years. Only 17% of people with learning disabilities who were of working age had a paid job. The figure for the population as a whole is 67% of men and 53% of women. Two thirds of the people with learning disabilities who were unemployed said that they would like a job. It would be reasonable to assume that the majority of those interviewed had some sort of communication support need, although this issue is not addressed directly. All the interview materials were modified to increase their communication accessibility. Almost all employed respondents (92%) said that they liked their jobs but 13% of them said that they had been bullied at work. Those most likely to get a paid job were those who:

• Had lower support needs
• Did not have a long standing illness or disability
• Were male
• Lived with fewer people
• Saw friends who had learning disabilities less often
• Were white
• Lived in an area with higher employment
• Had good general health
• Saw friends who did not have learning disabilities more often

6.8. People with a stammer have commonly reported negative experiences in the workplace. A review of the experiences of this group has highlighted these issues (Crichton-Smith 2002).With specific reference to employment they report that confrontation in the workplace was often viewed as a necessary, if daunting and unrewarding, exercise and commonly leads the individual with a stammer to try to avoid social situations, as described below:

" There are things I would avoid doing…there were other things which I would take on against my better judgement and make a mess of. It was a very fraught time really
"In public I avoid where I can, I get my daughter to do it for me."
Crichton-Smith p.346

6.9. Career planning that promotes career awareness in advance of school leaving may be a key ingredient here, and it has been suggested that aspects of employment can be particularly problematic for people with visual impairment (Salomon and Paige 1984). It is intended that career planning will improve the career decision-making process for this group and equip the individual with employable skills that make employment more accessible for this CSN group. Common barriers include attitudes of employers, transportation, reading print, obtaining adaptive equipment and accommodations, limited job opportunities associated with visual impairment, personal fears and uncertainties and recognizing faces (Crudden and McBroom (1999).

6.10. Perhaps not surprisingly the level of impairment experienced by an individual, whether it is the severity of the speech or language difficulty or the level of visual acuity, affects their level of employment. One feature which has started to emerge from the literature on visual impairment is the concept of under-employment, that is the likelihood that they will be employed at a level below their education and skills. In a recent study from New Zealand under-employment was reported to be of the order of 37% (La Grow 2004). Interestingly in this study it was suggested that the severity of the disability did not affect whether an individual was underemployed or not. Women and those with lower initial levels of education tended to have higher rates of underemployment.

6.11. Once in work it does not necessarily become easier. For example, people who are deaf are sometimes considered to be passive and withdrawn in the workplace but this may be largely a function of the environment and its communication accessibility, as described below:

"Before I worked for the Deaf organisation, I used to work with the hearing. I would get on with my job although there was a communication barrier. Since I have worked for the deaf organisation, it has really opened my eyes. All the information is available, and accessible. It was a great culture shock for me. Now if I have to go back to work with hearing - no thank you. I would rather be unemployed."
Kyle, Reilly, Allsop et al. 2005 p36

6.12. It is clear that employment represents a significant challenge for individuals with CSN. Klein and Hood, for example, report that nearly three quarters of a group of 232 people who stammer believed that stammering affected their chances of being employed in the first place and considered that their stammer would affect their chances of promotion (Klein and Hood 2004). Of particular concern is the relationship with people in senior positions at work rather than colleagues (Anderson 2005).

6.13. Stroke can also have dramatic effects on the employability of the individual. Many who experience stroke are beyond employment age but there is a substantial group of people who have strokes at a relatively young age for whom this issue is central. One of the few studies to directly address the needs of this group is Banks and Pearson's 2002 study of fifty people who had strokes between 18 and 49 years (Banks and Pearson 2002). One third who had been employed prior to their stroke returned to work. Their experience suggested that employers tended to be supportive initially but there was little understanding of the type of difficulties that people with stroke were likely to experience (tiredness, problems with concentration and memory) and as a result they were often reluctant to make the necessary adjustments to the work environment. The result, then, is a transition back into the workplace for a substantial proportion but a gradual withdrawal without necessary adjustments.

6.14. One of the few studies to address employment issues across a group of people with CSN (people with hearing loss, aphasia, voice disorders, post-laryngectomy speech, dysarthia and stuttering) has suggested that most of the issues are common. Principal barriers to work re-integration include ambient noise, tasks requiring speed, having to speak to groups of people, and the attitudes of others and their knowledge about communication disabilities (Garcia, Laroche and Barrette 2002). For example, individuals whose CSN is a result of neurological difficulties such as aphasia or speech difficulties have difficulty completing tasks quickly. Employer expectations of returning to full workload were viewed as a potential barrier for these groups. All CSN groups reported speaking to other people as a barrier. However, this varied across CSN groups, for example individuals with speech difficulties or who stammered had difficulties speaking to bosses, individuals with speech difficulties and aphasia had difficulties communicating with clients, while groups with hearing impairments experienced difficulties understanding people with accents.

6.15. One aspect of employment which can have an impact on families is the employment of the main carer. It is sometimes assumed that the employment of other members of the family is not affected by the needs of people with communication support needs. In fact, there is likely to be an effect on the employment of other parties and a resulting loss of family income associated with this, especially amongst those who are self employed. In a recent submission to the Equalities Review the Disability Rights Commission reported that 39% of mothers of disabled children were in work compared to 86% in the non-disabled population, with parents of disabled children facing on average three times the costs of parents of non-disabled children in bringing up their child ( DRC 2005). This is clearly also linked to the provision of childcare for the parents of disabled children (Kagan, Lewis, Heaton et al. 1999). This pressure on the employment of the parent may be particularly salient for the parents of children with autism (Blanchard, Gurka and Blackman 2006).

6.16. A study of the perspectives of 14 people with learning disabilities in employment revealed that none of the people in this sample were capable of completing their own tax forms, relying on the assistance of other employees or support staff. In 2 of the 14 cases the families of the employee with learning difficulties took over management of their finances (Reid and Bray 1998).

6.17. A survey carried out by Disability Agenda Scotland (2000) found that many disabled applicants complained about the time it took the benefits agency to deal with claims. Secondly, there appears to be inconsistency in the decision making process. This is illustrated in the following comment from the Disability Information Service:

The majority of first time applicants for DLA [Disability Living Allowance] are being turned down - which means going through the review/appeals process. We find that most appeals are then successful, indicating that the way DLA applications are dealt with is flawed.
Disability Agenda Scotland 2000

6.18. Many people reported problems in accessing advice regarding welfare rights and there appeared to be a lack of interpretive services available, for example in the case of users who required sign language. Furthermore, 97.3% of disabled people applying for Disability Living Allowance ( DLA) reported that they had found the application form difficult to use and 82.9% required assistance completing the form. Respondents described the form as "confusing and contradictory" (Disability Agenda Scotland 2003).

Attitudes

6.19. There is more in the literature about the response of people with communication support needs to the lack of employment possibilities, and correspondingly less on what the employers feel they are able to do. In part, this is because it is difficult for employers to indicate that they would not employ individuals with disabilities given the current legislation. Nevertheless employers agreed that stammering decreases employability and interferes with promotion possibilities, even though they felt that it had no bearing on job performance (Hurst and Cooper 1983). One innovative approach to working with those with disabilities to help them get back into employment is the "Ticket to Work" programme in the US, which is used by people with disabilities to obtain vocational rehabilitation services with the goal of returning to work. Such a scheme depends on the capacity of the employer to respond effectively. Examining the performance of the scheme for those with visual impairment, Capella-McDonnall reported that many employers raised a wide range of concerns about employing people with visual impairments (Capella-McDonnall 2005). Interestingly, employers seemed to have started to focus on people with specific disabilities, and, while they might take on people with mental health or developmental problems, they would not necessarily do the same for people with visual impairments. One perspective on the role of employers is the employment discrimination experience of Americans who are deaf or hard of hearing (Bowe, McMahon, Chang et al. 2005). The majority of allegations of employment discrimination were filed against large employers with over 500 workers, and the most common grounds for dispute were initial hiring, provision of reasonable accommodation and discharge.

6.20. In terms of attitudes the study referred to earlier in the chapter reports that "a lack of respect and a tendency for others to assume that their intelligence and mental skills were affected" may be a reflection of society's lack of awareness and understanding of CSN (Garcia, Laroche and Barrette 2002). In this study some employers had concerns that this may mask the individual's capacity for work

6.21. Benefits are a major concern for people with communication support needs, as they are for people with other disabilities, but in many ways their communication difficulties make the benefits system very difficult to understand and negotiate. For example, in a recent survey in Scotland of the needs of people with autism very few people with autism and over a third of their carers said that they did not understand the benefits system (Broach 2003). With regards to accessing advice concerning benefit entitlement many disabled people have encountered problems with staff who do not understand the complexity of their needs, although there are indicators that some areas within the benefits agency are taking measures to implement staff training.

Transitions

6.22. Difficulty in finding or difficulty returning to work after an incident, such as a stroke, which affects communication inevitably has a knock-on effect on the financial status needs of the individual. There is also the added burden of then negotiating the services which are available to support people in financial difficulties.

6.23 Concerns have been raised regarding the transition phases, such as going on work training. For example:

"When someone comes off Training for Work there is a long waiting time before the benefits are re-instated despite being told that this is a quick process".
Disability Agenda Scotland (2000), p11.

Secondly, individuals receiving benefits are usually expected to submit renewal claims 6 months before the existing award runs out. In some cases claimants rush to submit their renewal claim too early and their current benefit is withdrawn (Disability Agenda Scotland 2003).

Potential improvements

6.24. While most of the foregoing discussion has focussed on the experience of individuals, recent developments have started to stress the role of social networks as a means of facilitating person centred planning for both obtaining work and supporting an individual in employment. This has been shown to be a key feature of the way in which people use augmentative and alternative forms of communication (Carey, Potts, Bryen et al. 2004). An experimental intervention to ascertain the effect of specific modifications to facilitate the inclusion of people using AAC demonstrated that a range of supports, including job coach social facilitation training and eliciting co-worker support for social integration, were necessary to help people using AAC to integrate effectively into the workforce (Mautz, Storey and Certo 2001). There may also be value in using "communication books" as a way of reflecting the distinct needs of the individual (Storey and Provost 1996). Communication books contain pictures and photos of the individual, their families and friends to help people with CSN to initiate conversations or to answer questions. The books can be used in communication by combining spoken words and phrases with the pictures depicted in the book.

6.25. Services for the blind and visually impaired people are already in place to provide work placements for those concerned, and there is extensive legislation to support people with visual impairment into employment. This process is under constant review and new ways are being developed to ensure that appropriate modifications are available in the work place (Gamble, Dowler and Hirsch 2004) and to maximise the uptake of these services (Kirchner and Johnson 1997). Such "rehabilitation providers" act as mediators between the people with visual impairment and the employers, and are in a good position to articulate the needs of both groups (Crudden, Sansen and Butler 2005). For example, Crudden and colleagues have identified a number of positive innovations that these providers can put in place to address the four main barriers experienced by people with visual impairment, namely attitudes, transportation, access to print and the administrative and consumer barriers. One of the identified themes in this research was the need to further develop skills training related to literacy especially with regard to Braille, large type, computers with varied outputs and closed-circuit TVs. Finally, the blind community has also explored the value of "social networks" as a way of supporting people with visual impairment into the workplace (Roy, Dimigen and Taylor 1998). There is a case for considering how these successful developments can be adapted and rolled out for others with Communication Support Needs and used as a model of employment access for individuals with CSN.

6.26. In considering employment barriers common to all groups, Garcia et al. suggest that:

" When taken separately, most of the barriers in the workplace can be eliminated fairly easily by most organisations. Noise can be reduced, employees can be given access to e-mail to reduce the number of tasks requiring the use of the telephone, employees can be "eased into" and trained with groups of increasing size and in-services can be given to colleagues to help them become aware of the nature of different communication disabilities"
Garcia et al. (2002), p206.

6.27. Nonetheless, whether such adaptations are effective depends on the awareness and responsiveness of the employer and of the ability of the person with the communication disability to manage with the modifications that are made. Superficially it would be reasonable to assume that people with more severe difficulties would find it more difficult to make the necessary adaptations. It is important to recognise, however, that adults with mild acquired difficulties following, for example a mild stroke, may be particularly at risk because they are not themselves aware of the impact that their difficulties may be having on their performance at work. Additionally it may be equally difficult for the employer to recognise that adaptations are merited.

6.28. It is important to stress that there are already a number of mechanisms to help people with disabilities to get into the workplace in Scotland, and these have recently been reviewed in some detail (Riddell, Banks and Tinklin 2005). Although they cover a wide range of mechanisms and report on a range of policy impacts we were not able to find any which specifically address the needs of people with communication support needs. Lastly, when individuals are temporarily or permanently out of work and are relying on benefits there needs to be more clarity in the decision making process. The length of time for decision making regarding benefits should be reduced and monitored. Disability awareness training should be provided to benefit agency staff. Welfare advice and interpretation should be more accessible. This could be improved by a mapping exercise to identify services and gaps. (Disability Agenda Scotland 2000, 2003).

EMPLOYMENT AND FINANCIAL SERVICES - KEY POINTS

Problems identified

• Although employers may report positive attitudes towards employing people with CSN, these individuals are still more likely to be unemployed or employed at levels below their education status, and may be at a disadvantage for promotion opportunities.
• Even supportive employers may lack understanding of CSN and make only limited adjustments, leading to a gradual withdrawal of people with CSN from the workforce.
• Common employment barriers for people with CSN are noise, tasks requiring speed, speaking to groups of people, attitudes of others and their knowledge about communication difficulties.
• Employment experiences of families and carers of people with CSN may also be affected, e.g. parents of children with CSN may have difficulty in finding suitable childcare which allows them to work.

Potential for improvement

• The mechanisms and policies which are already in place to help people with disabilities get into the workplace could be extended to address the specific needs of people with CSN.
• The use of "social networks" may be useful in helping some groups of people with CSN into employment.
• Many of the barriers mentioned above can be removed through the use of relatively straightforward adaptations.