Working With AAC
I like work; it fascinates me. I can sit and look at it for hours. (JEROME J. 1889)
Far and away the best prize that life offers is the chance to work hard at work worth doing (THEODORE ROOSEVELT , Labor Day speech, 7th Sept. 1903, Syracuse, N.Y.)
Work is life, you know, and without it, there’s nothing but fear and insecurity. (JOHN LENNON J., Twenty‑Four Hours, 15 Dec. 1969, BBC‑TV.)
Ability to communicate effectively, self-motivation, dependability, flexibility, team player; look at any job advertisement or interview any employer and you will find these to be among the most desired qualities in potential employees. (SWEENEY L. 1993)
The different forms of intervention are aimed at providing life-qualities that most people take for granted: a place to live, a job - or at least meaningful employment - meaningful leisure time and pleasure in the company of others ..... (VON TETZCHNER S. & MARTINSEN H. 1992) (my Italics)
Many people develop a strong sense of who they are through work and now, especially where communication is severely affected, it is no longer possible for them to continue. (DALTON P. 1994, pp. 7)
Next to sex, employment is the least talked about subject in the field of AAC (WILLIAMS M. 1994)
Time was, if the boss caught you talking on the phone or hanging around the water cooler, he would have said, Astop talking and get to work!” Today, if you’re not on the phone or talking with colleagues and customers, chances are you’ll hear, AStart talking and get to work!” In the new economy, conversations are the most important form of work. Conversations are the way knowledge workers discover what they know, share it with their colleagues, and in the process create new knowledge for the organization. (WEBER A. from the Havard Business Review quoted by PETERS T. 1994, page 175-176)
Finding ways to help people with disabilities to become productive, working members of the community is not only good economics, but morally right (GINGRICH N. reported in EBMAN J. 1995page 11)
Any idea of a job open to two mute girls with only one CSE each, in a town already overpopulated with unemployed school leavers, was clearly unrealistic. (WALLACE M. 1996, page 44)
"What’s all this fuss about work?” "Surely it is obvious that a person who has both a severe disability and a severe speech impairment is not going to be employed.” "What could they do?” "The unemployment statistics demonstrate there are many people chasing every job that is made available. How can someone using AAC hope to compete?” These and other such negative attitudes and remarks do little to enhance the chances of the augmented communicator in the vocational marketplace. It is nearer the truth to say without AAC people will almost certainly not be able to compete:
We might argue that the development of such communication skills is not part of the business of schooling, but such an argument is difficult to sustain. Lacking the ability to plan. organize, regulate and express what they know in order to inform others, these children are surely likely to be handicapped in their vocational choices and in their personal lives. Even if the ability to inform and explain did not influence other aspects of the child’s educational achievements, an inability to present oneself as articulate and informative must surely act as a barrier to competence in many situations - not the least in interviews for jobs. (WOOD D. 1988)
Without access to this technology and the training/support needed effectively to use it, Americans with significant speech disabilities will continue to face isolation, discrimination, segregation, illiteracy, institutionalisation, unemployment, poverty and despair. (BRYEN D. 1993)
Communication/conversational skills are important to successful community integration, independence, employability, growth and development of interpersonal relationships. (BEAUREGARD B. 1993)
(My italics)
Indeed, in a world were first impressions are important, the ability to communicate may be the vital ingredient to moving beyond first encounters (See WILLIAMS M. 1993; KOVACH T. 1995)
This section deals with employment and the AAC user, with attitudes and expectations, with strategies and suggestions, with pitfalls and dangers, and the self-fulfilling prophecy:
Persons with severe disabilities are confronted by a multitude of self-fulfilling prophecies. Professionals purported to be their advocates have little or no vocational expectations of them. Subsequently, few persons with severe disabilities become productively employed (LESLIE J. 1993)
For people interested in further study in this area there are recommended further readings in the bibliography and there are many papers in the proceedings from the Pittsburgh employment conference for augmented communicators (see for example - HANEY C. 1993; VAN TATENHOVE G. 1993; CARLSON F. 1994; JOYCE M. 1994; CALCULATOR S. 1995; CREECH R. 1995; MIRENDA P. 1995).
In the past, I have been guilty of completely ignoring the world of work when teaching students who use a system of AAC, subconsciously thinking that open employment wasn’t feasible for the students I taught. Although there was a ‘ladder of opportunity’ which gave access to vocational training, very few students learning AAC moved beyond the first rung of the ladder. Beginners in AAC were unable to take full advantage of the opportunity because of external constraints. A problem was students arriving without adequate communication skills, often without a VOCA and in some cases without any system of AAC. The goal was to provide students with sufficient communication skills (on a VOCA) to meet their needs. Even for the most able of intellects learning to use a VOCA may take many months of study but, for those students arriving at college with average or below average intellects, a realistic time scale is measured in years. The tuition had to concern itself with language development (in semantics, in syntax, and in pragmatics) and because of this training took a long time. Given daily input of over one hour of one-to-one tuition, support from all staff and an expectancy of success many students became proficient users of AAC systems. However, as the funding for students could not be guaranteed for more than two years, users did not have time to move to the next rung of the ‘ladder of opportunity’. It is to be hoped that, in the future, F.E. establishments will not have to begin teaching students AAC skills because they will arrive able to communicate after being taught in school. F.E. establishments will be able to concentrate on further education and vocational training.
Training and preparation for work from an early age are vital:
Most able-bodied adults I’ve talked to during the preparation of this issue have had some sort of work experience in their early teens. The same can not be said of most of the people who use AAC. They are not ready to take charge of the basics of their lives let alone engage in a serious job search. I mean basic things like doing one’s grocery shopping and banking, things that most people do without thinking. (WILLIAMS M. 1994)
Far and away the best prize that life offers is the chance to work hard at work worth doing (THEODORE ROOSEVELT , Labor Day speech, 7th Sept. 1903, Syracuse, N.Y.)
Work is life, you know, and without it, there’s nothing but fear and insecurity. (JOHN LENNON J., Twenty‑Four Hours, 15 Dec. 1969, BBC‑TV.)
Ability to communicate effectively, self-motivation, dependability, flexibility, team player; look at any job advertisement or interview any employer and you will find these to be among the most desired qualities in potential employees. (SWEENEY L. 1993)
The different forms of intervention are aimed at providing life-qualities that most people take for granted: a place to live, a job - or at least meaningful employment - meaningful leisure time and pleasure in the company of others ..... (VON TETZCHNER S. & MARTINSEN H. 1992) (my Italics)
Many people develop a strong sense of who they are through work and now, especially where communication is severely affected, it is no longer possible for them to continue. (DALTON P. 1994, pp. 7)
Next to sex, employment is the least talked about subject in the field of AAC (WILLIAMS M. 1994)
Time was, if the boss caught you talking on the phone or hanging around the water cooler, he would have said, Astop talking and get to work!” Today, if you’re not on the phone or talking with colleagues and customers, chances are you’ll hear, AStart talking and get to work!” In the new economy, conversations are the most important form of work. Conversations are the way knowledge workers discover what they know, share it with their colleagues, and in the process create new knowledge for the organization. (WEBER A. from the Havard Business Review quoted by PETERS T. 1994, page 175-176)
Finding ways to help people with disabilities to become productive, working members of the community is not only good economics, but morally right (GINGRICH N. reported in EBMAN J. 1995page 11)
Any idea of a job open to two mute girls with only one CSE each, in a town already overpopulated with unemployed school leavers, was clearly unrealistic. (WALLACE M. 1996, page 44)
"What’s all this fuss about work?” "Surely it is obvious that a person who has both a severe disability and a severe speech impairment is not going to be employed.” "What could they do?” "The unemployment statistics demonstrate there are many people chasing every job that is made available. How can someone using AAC hope to compete?” These and other such negative attitudes and remarks do little to enhance the chances of the augmented communicator in the vocational marketplace. It is nearer the truth to say without AAC people will almost certainly not be able to compete:
We might argue that the development of such communication skills is not part of the business of schooling, but such an argument is difficult to sustain. Lacking the ability to plan. organize, regulate and express what they know in order to inform others, these children are surely likely to be handicapped in their vocational choices and in their personal lives. Even if the ability to inform and explain did not influence other aspects of the child’s educational achievements, an inability to present oneself as articulate and informative must surely act as a barrier to competence in many situations - not the least in interviews for jobs. (WOOD D. 1988)
Without access to this technology and the training/support needed effectively to use it, Americans with significant speech disabilities will continue to face isolation, discrimination, segregation, illiteracy, institutionalisation, unemployment, poverty and despair. (BRYEN D. 1993)
Communication/conversational skills are important to successful community integration, independence, employability, growth and development of interpersonal relationships. (BEAUREGARD B. 1993)
(My italics)
Indeed, in a world were first impressions are important, the ability to communicate may be the vital ingredient to moving beyond first encounters (See WILLIAMS M. 1993; KOVACH T. 1995)
This section deals with employment and the AAC user, with attitudes and expectations, with strategies and suggestions, with pitfalls and dangers, and the self-fulfilling prophecy:
Persons with severe disabilities are confronted by a multitude of self-fulfilling prophecies. Professionals purported to be their advocates have little or no vocational expectations of them. Subsequently, few persons with severe disabilities become productively employed (LESLIE J. 1993)
For people interested in further study in this area there are recommended further readings in the bibliography and there are many papers in the proceedings from the Pittsburgh employment conference for augmented communicators (see for example - HANEY C. 1993; VAN TATENHOVE G. 1993; CARLSON F. 1994; JOYCE M. 1994; CALCULATOR S. 1995; CREECH R. 1995; MIRENDA P. 1995).
In the past, I have been guilty of completely ignoring the world of work when teaching students who use a system of AAC, subconsciously thinking that open employment wasn’t feasible for the students I taught. Although there was a ‘ladder of opportunity’ which gave access to vocational training, very few students learning AAC moved beyond the first rung of the ladder. Beginners in AAC were unable to take full advantage of the opportunity because of external constraints. A problem was students arriving without adequate communication skills, often without a VOCA and in some cases without any system of AAC. The goal was to provide students with sufficient communication skills (on a VOCA) to meet their needs. Even for the most able of intellects learning to use a VOCA may take many months of study but, for those students arriving at college with average or below average intellects, a realistic time scale is measured in years. The tuition had to concern itself with language development (in semantics, in syntax, and in pragmatics) and because of this training took a long time. Given daily input of over one hour of one-to-one tuition, support from all staff and an expectancy of success many students became proficient users of AAC systems. However, as the funding for students could not be guaranteed for more than two years, users did not have time to move to the next rung of the ‘ladder of opportunity’. It is to be hoped that, in the future, F.E. establishments will not have to begin teaching students AAC skills because they will arrive able to communicate after being taught in school. F.E. establishments will be able to concentrate on further education and vocational training.
Training and preparation for work from an early age are vital:
Most able-bodied adults I’ve talked to during the preparation of this issue have had some sort of work experience in their early teens. The same can not be said of most of the people who use AAC. They are not ready to take charge of the basics of their lives let alone engage in a serious job search. I mean basic things like doing one’s grocery shopping and banking, things that most people do without thinking. (WILLIAMS M. 1994)
WORKING 2 - Task & Discussion Sheet
Work through the task presented. 10 - 15 minutes should be enough time.
The task and the discussion session contain issues that are pertinent to ‘working with AAC’. The number of people who use AAC in full-time employment in both the USA and the UK is limited (See BLACKSTONE S. 1993; LaPLANTE M. 1993; BLAKE HUER M. 1994; JONES A.P. 1994; SEGALMAN R. 1995) but not impossible.
I may have been lucky that I did not know the odds against my finding a job as it might have discouraged me. If 75 percent of all people with disabilities are unemployed, probably close to 90 percent of people with speech disabilities are unemployed. (SEGALMAN R. 1995 page 71)
There are a number of contributory factors involved in the small number of people with speech disabilities in employment (See MILLER A. 1994 page 120). An edited and updated version of a paper on work is reproduced below. It was originally presented at the Second Pittsburgh Conference on Employment for people using Augmented Communication in 1994 (JONES A.P. 1994). It gives some idea of the current state of affairs in the UK and looks at some of the contributory factors involved. (For the USA please refer to the Pittsburgh Conference Proceedings 1993, 1994, 1995, ......)
AAC and employment in the United Kingdom
This paper is a preliminary study of the position on employment of people with a congenital disability who use a system of AAC as their primary means of communication in the United Kingdom.
Labels and definitions
It became obvious while making enquiries at a number of book shops throughout Britain that there was a dearth of statistical information on the topic of AAC and employment. Few people really understood the terms I was using and I had the feeling that, even after my lengthy words of explanation, they were no wiser!
If the information wasn’t readily available, I had something of a challenge - I would have to attempt to find out. Again, after ringing a number of people working in, or connected with, the field of AAC, I rapidly came to the conclusion that this task wasn’t going to be easy. First, after I had explained the information I was seeking (‘How many people with a disability who use AAC are there in employment?’), a number of questions were asked of me: ‘What did I mean by employed?’, ‘What did I mean by disabled?’, ‘What did I mean by person using AAC?’, and ‘What did I mean by AAC?’
What did I mean by employment?
There are a number of employment situations in existence varying according to whether the person is in full or part time employment, and to the category of employment - open, supported, sheltered, self-employed, or family concern (See Table 1 below).
TABLE 1: Types of Employment
OPEN
SHELTERED WORKSHOP
SHELTERED
PLACEMENT
SELF
EMPLOYED
FAMILY
CONCERN
FULL
Full & Open
Full Time
Full time Sheltered
Full time Self- employed
Working full time in family business
PART TIME
Part time Open
Part Time
Part Time Sheltered
Self-employed but only part time
Working part time in the family business
I was able to find a few people who were working in a family business either part time or full time. The family had created a position for the person such that a job was secured for life. A few people were also self-employed. This appeared to be a difficult situation as work was never guaranteed. This often meant that, what was intended to be a full time occupation tended towards part time work. Indeed, two people had set up their own businesses and had subsequently failed, now were unemployed.
In the U.K. there are two forms of sheltered work placement. First, there are special units set up by local authorities and charities which provide ‘sheltered work’ for individuals with a physical or a cognitive disability who are unable to find open employment. These are known as ‘Sheltered Workshops’. However, there is another form of sheltered employment. If an individual is able to perform at least 30% of the work of an able bodied peer then (if companies are willing to take on such a person) the individual is given a full time (or part time) job in which the company pays 30% of the salary (or whatever proportion of the normal salary that position would attract according to how much the employee is able to perform on assessment). The remainder is made up by the Government. This was established in 1985 and is known as the Sheltered Placement Scheme (SPS). There is a drawback however, each area is given a quota, a number of people it is able to place in this form of sheltered employment. Should this quota be reached (it varies according to the population of the area in question) then the next individual seeking employment under this scheme, even though a position may exist, has to wait until another person retires, leaves the job, or dies. In reality, people do not have to wait as there is usually someone leaving or moving on. However, if the number of people with disabilities seeking employment was to rise then problems would be caused by the sheltered employment quota system.
I was interested in people in both full or part time open employment. Also included was anyone who came under the category of sheltered employment but not sheltered workshops. It has been suggested that the sheltered work setting and the development of augmented communication skills are often mutually antagonistic:
Among the skills often cited as Aneeding work” in sheltered workshops are those related to communication and social interaction. The logic is that, in order for people to work in the Areal world” with nondisabled co-workers and employers, they will need to be able to communicate either through speech or through some form of augmentative communication. And what better place to work on work-related communication skills than in a sheltered work setting! The problem is that, like Amilitary intelligence”, AJumbo shrimp”, and Aprogressive conservative”, the pairing of "augmentative communication” and Asheltered workshop” is an oxymoron. Communication in general, and augmentative communication in particular, is antithetical to the value system, opportunities, and types of relationships available in sheltered workshops. (MIRENDA P. 1995 page 13)
I was also interested in people who were self employed and those in a family business but would want to ask why they were in this position. Was it because no other job was open to them? Had they tried to find a job? I am in no way implying that these forms of occupation are not worthwhile but, for the purpose of this paper, I wanted to see just how many people were able to find work in the vocational market place through the standard channels.
What did I mean by disabled?
There are a number of categories of disability and I was asked repeatedly what I meant by the term disabled. The question raised some interesting issues. In order to qualify for a number of government funded grants to both the employee and to the employer, the individual seeking work must have registered as disabled. The Disabled Persons Register is voluntary (although a person has to register in order to achieve certain grants) and administered by the DEAs (Disability Employment Advisers) found in every Job Centre (these are centres for all people seeking employment based in most large towns and cities). It relates only to employment and is not connected with any other register that may exist for housing or social service purposes. The person registering is entitled to a number of benefits:
C help in getting and keeping a job;
C help with the cost of travelling to work;
C equipment for the period of employment if it is necessary to carry out the job;
C employment under the Sheltered Placement scheme or in a Sheltered Workshop.
In order to be eligible to register the individual must:
C have a health problem or disability which makes it substantially more difficult to get or keep a job;
C have a health problem or disability which is likely to last 12 months or more;
C be in work, or self employed, or want to work and have a reasonable prospect of being able to do so;
C be above school leaving age.
On registering the individual is given a certificate (normally called the Green Card) which can last for a number of years depending upon the nature of an individual’s disability. There are a number of problems with basing any research on statistics compiled from this register. First, a person whose sole disability is a severe communication impairment may decide not to register and thus not qualify for help under the scheme. Many people with disabilities refuse to register as a political act. They see it as demeaning to do so to get help which is seen as a right and not a charity. The third criteria ‘want work and have a reasonable prospect of being able to do so’ seems open to abuse although there is no evidence that this is the case. Because the expectation of employment of many people with disabilities’ is extremely low few people actually get as far as seeking open employment though the ‘Register of Disability’.
Only people with a congenital condition or acquired in early childhood were included in the survey. There were several reasons:
C The task, in the time I had available, was proving to be extremely difficult. Facts and figures did not appear to exist or, at the very least, were very difficult to find. The smaller of the two tasks was to research the number of people with congenital disabilities. Any findings in this area might suggest the likely outcome of research for people with acquired problems.
C People with acquired problems may have been in work when the originating trauma occurred. The work place was kept open until the individual was fit to return.
C One way of assessing the quality of the educational and vocational system that exists for people with special needs is to analyse the numbers of people with congenital problems achieving work. People with acquired problems may not have travelled this road.
What did I mean by person using AAC?
Some people had no idea what was meant by an augmentative communication system and proceeded to tell me about the number of people they had helped to find employment through the provision of a computer with a voice recognition system or a screen reader. Having explained that statistics on this area was not what was required, it became necessary to delimit what was meant by both using and AAC.
After some thought, using was replaced by Using AAC as the primary means of communication. This was to make a distinction between a system in full use and a system which had been supplied but was only being used in a limited manner. This caused further problems. Many people said that they thought they knew of a person who was in employment but were not sure if the AAC system was in use. The individual’s speech impairment in these instances was obviously no barrier to finding and keeping a job and would be an interesting area of study in itself. However, the area of study was people who were using a system of AAC as their primary means of communicating, not those who simply had a system.
What did I mean by AAC?
Were screen readers, writing down messages on pieces of paper, or typing onto a laptop screen included as systems of AAC? It is a difficult demarcation. Any line that is drawn between one end of the continuum and the other is arbitrary at best. What should be included and what should not? I wanted to include anyone using an aided system, whether high or low-tech and both with and without voice output. However, this would include a typewriter. It was easier to say what would not count as an AAC system rather than those that would. The Canon Communicator (though the latest version has significantly more facilities), in its simplest form, is a typing system little different to a portable typewriter. There is, however, an important difference. The Canon Communicator was specifically designed for the purpose of communication (in the AAC sense). Thus, the specification was for dedicated systems or, at the very least, devices which had been adapted such that their primary purpose became the provision of augmentative communication.
Thus the task became to find the number of people with a congenital disability who used a dedicated form of AAC as their primary means of communication working in open employment or on the sheltered placement scheme* in the United Kingdom. (* not in sheltered workshops)
The law, employment, and people with disability
There are a number of laws relating to both disability and employment in the UK which are worthy of mention here. The situation is changing rapidly. At the time this paper was written, a 102 page consultation paper entitled ‘A Consultation on Government Measures to Tackle Discrimination Against Disabled People’ was published. It proposed (among other things) that the existing quota scheme be abolished and replaced by a statutory right of non-discrimination in employment. This appeared to be in response to the outrage caused by the failure of a private member’s bill (Labour MP Roger Berry’s ‘The Civil Rights [Disabled Persons] Bill’ - similar in proposals to the Americans with Disabilities Act) to be enforced after the Government sabotaged it by tabling 82 amendments.. This Bill proposed radical changes to the civil rights of people with disabilities. Even the then Minister for the Disabled’s (Nicholas Scott) daughter Victoria (who is co-ordinator of the disabled action group ‘Rights Now’) has publicly criticised the government and called for her father to resign over this issue.
The Government does not accept a concept of rights for disabled people.
We can accept nothing else. (SCOTT V. 1994) (The daughter of the then Minister for the Disabled)
The Disabled Persons (Employment) Act of 1944 was responsible for setting up the Disabled Persons Register and made it law for all employers with a workforce of over 20 people to give employment to a quota of disabled persons (currently 3%). This became known as the ‘Quota Scheme’. Even the Government freely admits the quota scheme is unenforceable and has never worked (PARTRIDGE C. 1994). The ludicrous situation is made clear by the statistics involved. There are 6,000,000 people with disabilities in Britain (3.5 million of working age - based on extrapolation of figures from Commission of the European Communities 1988) and yet only 371,734 are ‘registered disabled’(July 1994)(Interestingly, the figure is falling 936,000 in 1950 and 389,000 in 1986). Further, the three percent quota of the current workforce amounts to some three-quarters of a million people. Thus, there should be two jobs for every person who is already registered. However, on average, firms are employing less than 1% of people registered as disabled with only 27% of firms actually meeting the quota (WORMAN D. 1989). Even government departments and local authorities are failing to meet the set standard with 43 local Authorities not employing any people registered as disabled (TUC 1993). If all 3,500,000 people of working age with a disability were to register tomorrow (an unlikely event), there would be a serious shortage of places available under the scheme and the wait for a sheltered placement would be greater than the average lifespan. The figures on the unemployment of people with a disability when compared with that of the total working population consistently show a percentage ratio of approximately 2:1, that is the unemployment rate amongst disabled people is at least Atwice that for the working population as a whole” (WALKER A. 1982, COMMISSION OF THE EUROPEAN COMMUNITIES 1988, FRESHWATER K. & LEYDEN G. (1989), WORMAN D. 1989, See also YOUTHAID 1992.)(In the USA the unemployment rate for people with disabilities is also high - between 65% and 76%. See DICKERSON L. 1995 page 32, BRYEN D. 1995 page 36). Employers are six times more likely to turn down a person with a disability for an interview, even if their qualifications and experience are identical to those of a non-disabled applicant (SMITH S. 1992):
Finding employment is still very difficult for someone with a visible disability. Such people must send out more resumes and make more contacts than able-bodied people or people with hidden disabilities. Even among people with visible disabilities, AAC users can expect to have a more difficult time finding employment. (SEGALMAN R. 1995 page 69)
Indeed, British people with disability fare far worse than their European counterparts in the vocational marketplace (GRAMMENOS S. 1993) and, even in 1995, people are still being refused jobs for which they are qualified on the grounds of their disability alone (See - BRADBURY D. 1995). It is often stated that people with physical disabilities may be more suited to careers in information technology:
AIT and computers are good sources of jobs for disabled people. The emphasis is on workers’ value-added expertise and problem solving skills which make matters of physical ability irrelevant” said Janet Barrett from the Employer’s Forum on Disability. (ABILITY 1996 page 9)
However, yet again, there is no evidence to suggest that such posts are being made available:
there is no indication that disabled workers are adequately represented even in these fields. 80% of employers do not employ the minimum 3% quota of registered disabled people formerly recommended by government. (ABILITY 1996 page 9)
Despite recognised skills shortage within the computer industry, there is comparatively little effort to recruit or retain disabled people who have these skills - this is more a matter of ignorance rather than ill-will. But it can’t be good business for anyone. (BUSBY G. quoted in ABILITY 1996 page 11)
A scheme entitled ‘Access to work’ (EMPLOYMENT SERVICE 1994) has been introduced. From the 6th June 1994, the range of services to both people with disabilities and their employers was extended and simplified. Under the ‘Access to Work’ scheme ,19,000,000 was originally set aside in 1996 to provide equipment, help in terms of support, adaptations to cars and transport costs and alterations to premises or working environments for individuals registerable as disabled. Each individual is entitled to help up to the value of ,21,000 over a five year period. This appears to be a fairly flexible figure (a case may be made for further funding, and it does not appear to have to be evenly spread over the five years) and the figure may be renewed after the first five years. The ‘Access to Work’ scheme is run by local PACT teams (Placement, Assessment And Counselling Team) and the ADCs (Ability Development Centres) which are evenly spread throughout the UK. This scheme has been criticised by disability groups. A RADAR spokesperson is on record as stating that the scheme Aamounted to little more than ,2 for every person with a disability” (THERAPY WEEKLY JUNE 2 1994).
Note: The ,19,000,000 pound figure quoted above is under some threat from a ,7,000,000 cutback and this is giving much cause for concern (See PYKE N. 1996)
Some existing grants are however Aa standing joke” (THERAPY WEEKLY AUGUST 6 1992). For example the ‘Disability Working Allowance’ which was designed to help disabled people with disabilities in employment had 13,000 applications in 1992 but only 1,000 were successful. A Benefits Adviser quoted in Therapy Weekly said, AWe have yet to find anyone who can claim it who would be better off.”
After talking with a number of DEAs (Disability Employment Advisers) from PACTs and the Technical Officers at the ADCs I am reasonably convinced that should a person require the provision of an augmentative communication aid in order to gain or to maintain employment there would be no problem with finance. The cracks start to appear when it is asked how many such aids have been supplied under the present and previous provision for equipment. In nine ADCs surveyed (there are nine in Britain) only one had ever (to their knowledge) supplied a dedicated system of Augmentative Communication under any scheme allowing for the provision of equipment. In the one instance, the Technical Officer concerned was unable to confirm the details and did not know if the lady had a congenital or acquired disability.
TABLE 2: STATISTICS FOR UK
Number of people with disabilities
6,000,000
Number of people with disabilities of working age
3,500,000
Number of people registered disabled (1994)
371,734
Number of people with a severe communication impairment
800,000
Number of people of working age with a severe communication impairment
320,000
Number of people in UK without speech as result of development disorder
225,000
Number of people to the age of 19 with a serious communication impairment requiring an AAC system
75,000
Number of children born every year with a motor handicap and a serious communication impairment requiring an AAC system
600
Number of people to the age of 19 with a motor handicap and a serious communication impairment requiring an AAC system
11,900
As the PACT teams operating within each ADC area have a certain amount of autonomy with regards to the provision of equipment (providing the costs involved do not exceed a specified amount), the ADCs did not know if the local PACTs had supplied an AAC system to a person seeking employment. Although only a few of the DEAs in PACTs around the country were contacted, again the picture presented was bleak - no one could remember ever having provided such a piece of equipment. Two people had been funded for a VOCA by the Employment Service, one of these was in full time work, the other presently unknown. Head Office, situated in Sheffield, stated there were no records of this sort available for analysis and were unable to help further, suggesting alternative sources for enquiry. One of these sources led to the discovery of the PSS (PACT Support System) which is a database of all the equipment provided to clients at a local level. This is a new scheme and all the relevant data has not yet been entered by many of the PACTs (perhaps by end 1995). However, it does not appear the information will be correlated centrally. To discover the UK picture one would have to approach all the 72 PACTs. Even more disheartening was a comment made by a senior member of staff that the individual databases probably would not be able to provide a field search of information on type of employment, nature of disability, and provision of equipment.
It appears there is no problem in funding an AAC system but only a small number of people have come forward to request one. It could be argued that provision of an AAC system must come before an individual enters the vocational marketplace. In the few cases where people were found using AAC in full or part time employment the equipment was provided by alternative sources at an earlier date.
The Case of E: An interesting situation came to light in the investigation. It concerned a lady who had been provided with both an electric wheelchair and a VOCA by the Employment Service. However, these were seen as items solely for use at work. She was not allowed to take them outside the office unless on an official errand. Thus, the ridiculous situation was that E was expecting to have to purchase an identical wheelchair and an identical VOCA for use outside of office hours. She would arrive at work in her own chair and leave it in reception, transferring to the office chair. The VOCA would be swapped for an identical system during office hours but removed before she went home with her own VOCA. A number of people had tried to point out the ludicrousness of this situation but to no avail. These items were provided by an employment grant specifically for work and not for leisure or home use.
Or the unrealistic edicts like the PACT office which reprimanded a wheelchair rider for Aundue wear and tear” and instructed her only to use the wheelchair which they had purchased for her while in her office building, or on official business. (ABILITY 1996 page 12)
Specialist Groups and Centres
There are a number of Groups, Charities, and Centres specialising in Augmentative Communication throughout the U.K. (Henceforth, referred to as GCCs). Many of these were contacted in the hope that they would be able to furnish further information on the statistics involving people in employment or, at least, point out the direction of research and data.
All the specialist groups were helpful, but much information was anecdotal and other information fell into the category of AI am not sure but I think X is using one and I think X has a job at least part time”. Apparently, one GCC commissioned a report on the preferences of adults in higher education and employment for AAC systems but was unable to find a large enough corpus of people to study. However, no one at this particular GCC could confirm or deny that the study ever took place - AMust have been before my time.”
What then of the research that does exist? The final number of people using AAC in employment from the GCC source amounted to two with two others working for family concerns and one in part-time employment.
Data and Research
There are 6,000,000 people with disabilities in the UK of which approximately 800,000 have a severe communication disorder (See Table 2) which would warrant the use of some form of AAC system (ENDERBY P. & PHILLIPP R. 1986). Of these approximately 320,000 are of working age.
A number of research documents did come to light (there is no pretence that these are all that exist) and although a few didn’t specifically address the topics of AAC and employment they contained information which was of use:
Ingram T., Jameson S., Errington J., & Mitchell R. (1964)
A follow up study of 200 young adults with cerebral palsy in Scotland found that the less severe the level of disability the greater the likelihood of open employment. Factors adversely affecting employment chances included any speech impairment.
Pollack G. & Stark G. (1969)
A follow up study of 67 children into young adulthood in Scotland. The study found that while the severity of the disability was a major factor in gaining employment, speech impairment directly affected the chances of open employment in people who did not have a severe disability.
Wilson M. (1970)
A study of 343 people with cerebral palsy from the age of 9 to the age of 18. 31 went into open employment and 23 into continuing education. The study found that the more severe the disability the less the chance of entering open employment.
Hirst M. (1987)
A study of 274 young adults with a physical disability. Only 11 people in the survey had achieved open employment by the age of 21 with the majority in Adult Training Centres. Those who gained employment were the least disabled in the survey. No one with a speech impairment achieved employment status. Indeed Athose without speech .... were more likely to have been wholly unoccupied at some time during the post-school period” (HIRST M. 1987 pp. 8)
Thomas A.P. (1988)
A survey of 107 young adults with physical disabilities in the London area. No mention is made of any of the people in the survey having any form of employment.
Murphy J., Marková I., Moodie E., Scott J., & Boa S. (1992)
Comprehensive Scottish survey of 225 people with cerebral palsy who already were using AAC. Of the people in the study, 104 were of working age with 32 of these using two systems (high & low tech). The majority of the sample (162 people) had only been using a system of AAC for under three years. The study found only one person in employment part time.
Masterson G. & Morris D. (1994)
A small survey of just nine people with cerebral palsy between the ages of 15 - 24 detailed two people in full time employment in England and one person in part time employment in Scotland. The two people in full time employment in England were both employed by the same marketer of Augmentative Communication Aids and it is unlikely that they would have been in employment had these positions not arisen.
Barnett S. (1994)
A study of 33 young adults with cerebral palsy in the London area aged between 18 and 33. None of the study who had gained employment (5 people) used an AAC system.
Jones A.P. (1994)
I have been involved with the education and training of people who need Augmentative Communication since 1986. In that time, at the College where I previously worked, some 45 students have acquired AAC skills to varying degrees of ability. However, only one is now in full time employment. He is working for a company that markets communication aids.
Fast Track (1994)
Not a study but a scheme administered by the Spastic Society (now ‘SCOPE’) to get people with cerebral palsy into work. Although in its infancy, of the 52 people so far successfully involved not one has used any system of AAC.
The Communication Aid Marketers and Manufacturers
A source of information on the matter of employment is the companies throughout the UK who either manufacture or market (or both) AAC systems. I am keen not to make this a competitive issue so that no false claims can be made about one system over another regarding employment opportunities. This would oversimplify the situation when many factors are involved. Some systems, for example, require literacy skills. The literate person has a greater likelihood of achieving employment. One would expect that such systems would form a higher population in the vocational marketplace, especially among people with acquired conditions.
All the companies contacted were most helpful. A number said they had records of many people with acquired disabilities who were already in employment at the time of onset but, overall, there were very few who knew of anyone with a congenital speech impairment using an AAC system in employment. The companies were only able to point to four people in the UK in full time employment and two in part time employment. Of the four, two were employed full time by one of the companies itself. The same company employed several people using AAC on a casual basis one day at a time as and when necessary.
Comments
There appear to be very few people in the United Kingdom with a congenital disability using a system of AAC in open employment. The total figure may be as few as ten. There may be people not yet discovered and the research is continuing. It is difficult to say why the findings were so poor. Indeed I would hesitate to make any substantial claims at this point. However, the following are important factors in employment:
Expectation Money Passivity Legislation Obstructions Young Market Education Norm Technology
Expectations, beliefs, and attitudes
The expectancy of work for people with disabilities is low among potential employers, people who use AAC systems, and the significant others who live and work (not in the employment sense) with them:
Why are so few people with developmental disabilities employed? The reasons are many and complex. First, and perhaps, most importantly, are low expectations -- expectations that people with developmental and other disabilities cannot or should not work because of their disability. These low expectations lead to learned helplessness... (BRYEN D. N. 1995 page 37)
I was recently told that children with physical disabilities and accompanying learning difficulties only need four items of vocabulary:
‘Can I have a drink please?’, ‘Can I have something to eat please?’, ‘Can I go to the toilet please?’, ‘I am unhappy about something.’
When asked if the four were a starter set of vocabulary the reply was:
ALet’s face it, they are going to be in care all their lives. What more do they need to say?”
This was a special educator. Sadly, similar attitudes are not uncommon.
Money
Finance and funding does not appear to be problematic through the ‘Access to work’ scheme, if a person can find or has hope of employment. However, for many aided forms of communication, which require support and tuition in order to develop the skills necessary for their use, this is too late. Systems which rely on literacy skill may have a virtually immediate transparency but the support and training of the education system is directed primarily at the development of such skills. Those who are pre-literate are at an obvious disadvantage if the provision of a suitable aid has to wait until there is a glimmer of hope of employment. Stephen Hawking summed it up when he told the press at the opening of the Science Museum exhibition on communication in London in October 1993:
People can only get synthesizers if they can raise the cash. That’s not good enough. People should not be condemned to be just vegetables. People should campaign to get these devices on the National Health Service. (HAWKING S. 1993)
It should be made possible to gain open employment without the loss of the grants and allowances. No one should be worse off by entering employment. No one should feel that they will more comfortable financially by not looking for work. However, this should not be achieved by reducing the present grants and allowances.
Passivity and Learned Helplessness
Learned helplessness and passivity are also major obstacles in encouraging people to seek work. People are not born passive; they learn to be passive in their interactions with others. Attitudes and practices must change.
Learned helplessness often becomes the greatest crippler of all. Not surprisingly, therefore, many people with developmental disabilities have learned that it is easier to accommodate to other’s perceptions, other’s low expectations, than it is to set higher expectations for themselves or to demand access to the necessary supports and services they need to find and attain a job. Such young people have instead learned to be passive, to view themselves as being helpless (WILLIAMS B. 1995)
Legislation
The new regulations concerning the disabled and employment and the changing face of education for those with special needs may serve to alter the situation in the future. However, groups concerned with lobbying for a better deal for the disabled community are sceptical about progress. The Government’s sabotage of the Civil Rights (Disabled Persons) Bill recently adds strength to their claims. This is not the first time that this has happened. The Government was responsible for the ‘talking out’ of Alf Morris ‘s Civil Rights (Disabled Persons) Bill in 1992.
Obstruction Of Occupations On Offer (physical and psychological)
One of the proposals of the new Civil Rights (Disabled Persons) Bill, which did not become law, was the requirement that workplaces should be accessible to people with disabilities. While grants are available under the ‘Access to Work’ scheme to adapt offices and provide access, these are limited to ,21,000 per person over a five year period unless there is appeal to a higher authority. However, access is still a problem - even in the United States:
After years of legislation and advocacy promoting the social model of disability in the US, it now seems as if the medical model is making a comeback. Crudely, if given the picture of a wheelchair user stuck at the bottom of a staircase, the social model would identify the disability as the inaccessible environment; the medical model would locate the disability in the person’s inability to climb the staircase. According to this regressive model, the problem lies with the individual who does not have access to the environment, rather than the parties who commissioned the environment to be constructed in that way, or the people responsible for its design. (ABILITY 1996 page 16)
Young field
AAC is still in its infancy. Many people, who are of a working age, have had a system of AAC for under three years (MURPHY J., MARKOVÁ I., MOODIE E., SCOTT J., & BOA S. 1992). Others who use AAC, are still working their way through the education system. It is to be hoped that, there will be more opportunities open to them in the future and the situation will slowly begin to improve. There is no room for complacency; there must be action to ensure that the situation does not stagnate.
Market Place
It would be foolish to ignore the current state of the vocational marketplace as a factor in gaining employment for people using AAC systems. The more people who are unemployed the more difficult it will be to find employment. There should be equality of opportunity. A person with the necessary qualifications and skills should not have a lesser chance of employment because of disability or use of a system of AAC.
Further, M stands for Mobility in the Market place. To have greater potential to achieve employment a person may have to move areas. If a person with a disability is tied to a particular location through housing, grants and services, this will lower the range of options available for employment.
Education
The educational system itself is also at fault. There is difficulty in finding funding for a system of AAC such that there is no guarantee of provision of a system on recognition and assessment of need. Many years may pass. Implementation practices leave much to be desired with staff untrained and often unaware of the potential (See, for example, MILLAR S. 1990; MILLER C. 1991a, 1991b, and RATCLIFF A. & BEUKELMAN D. 1995 for a review of professional preparation in the USA). Often, the expectation of and time allocated to augmentative communication is poor. Typically, strategies that were in use before the provision of an aid are continued after the aid has been supplied. These strategies may have the effect of delaying or actually preventing the development of AAC skills.
Education also includes the education of the employers and co-workers (indeed all significant others). Worman (WORMAN D. 1989) lists 20 blockages and barriers which may prevent people with disabilities from obtaining employment. There are continuing ‘myths and stereotypes’ which make employers less likely to take on a person with a disability (ABILITY 1996 page 9). Indeed, in order to fulfill their quota, employers are more likely to retain employees who become disabled during their working life rather than taking on a person with a disability anew(HONEY S., MEAGER N., & WILLIAMS M. 1993). With a raising of awareness of the issues involved the majority of these barriers could be eradicated.
Offer disability awareness training for all co-workers with whom the employee with a disability will interact. This should smooth the transition for the individual with a disability. And, in many cases, it will also prepare employees to deal with customers who have disabilities. (DICKERSON L. 1995 page 33)
Need New Norms Now
It appears that it is not the norm for people with a severe disability who have a speech impairment to be in employment. Disabled champions of this issue may slowly begin to raise public awareness of the issue. It is to be hoped that attitudes will change over time.
Technology and Training
The advent of new technologies with increased support for communication, ease of access, clarity of voice, potential for growth with an individual, the capability of storing a typical adult vocabulary, increased flexibility, and greater portability should help people to make their voices heard.
In a recent survey of ten people who used VOCAs (SUTTON T. 1994), eight out of ten people said that the three most important things about their VOCA were being able to:
C communicate with anybody;
C use the telephone;
C find or look for employment.
T also stands for training. Training for employment prior to, during transition, and on-the-job. Support for people with disabilities while at work is vital. This will be likely to include:
C further training;
C extra help with procedures;
C simplified routines for some individuals;
C caring and flexible supervision;
C flexible time schedules;
C the support of:
- a personal assistant;
- management;
- co-workers;
- family and friends;
Supported employment was based on a notion that individuals with severe disabilities could contribute effectively and meaningfully in a variety of work settings so long as necessary supports were available in the form of people, technology, and so forth. In order to be successful, it is important that people providing primary support to individuals with severe disabilities, or, direct service providers, begin to view their role more as life enhancers or facilitators and less as careproviders (CALCULATOR S. 1995 page 50)
The task and the discussion session contain issues that are pertinent to ‘working with AAC’. The number of people who use AAC in full-time employment in both the USA and the UK is limited (See BLACKSTONE S. 1993; LaPLANTE M. 1993; BLAKE HUER M. 1994; JONES A.P. 1994; SEGALMAN R. 1995) but not impossible.
I may have been lucky that I did not know the odds against my finding a job as it might have discouraged me. If 75 percent of all people with disabilities are unemployed, probably close to 90 percent of people with speech disabilities are unemployed. (SEGALMAN R. 1995 page 71)
There are a number of contributory factors involved in the small number of people with speech disabilities in employment (See MILLER A. 1994 page 120). An edited and updated version of a paper on work is reproduced below. It was originally presented at the Second Pittsburgh Conference on Employment for people using Augmented Communication in 1994 (JONES A.P. 1994). It gives some idea of the current state of affairs in the UK and looks at some of the contributory factors involved. (For the USA please refer to the Pittsburgh Conference Proceedings 1993, 1994, 1995, ......)
AAC and employment in the United Kingdom
This paper is a preliminary study of the position on employment of people with a congenital disability who use a system of AAC as their primary means of communication in the United Kingdom.
Labels and definitions
It became obvious while making enquiries at a number of book shops throughout Britain that there was a dearth of statistical information on the topic of AAC and employment. Few people really understood the terms I was using and I had the feeling that, even after my lengthy words of explanation, they were no wiser!
If the information wasn’t readily available, I had something of a challenge - I would have to attempt to find out. Again, after ringing a number of people working in, or connected with, the field of AAC, I rapidly came to the conclusion that this task wasn’t going to be easy. First, after I had explained the information I was seeking (‘How many people with a disability who use AAC are there in employment?’), a number of questions were asked of me: ‘What did I mean by employed?’, ‘What did I mean by disabled?’, ‘What did I mean by person using AAC?’, and ‘What did I mean by AAC?’
What did I mean by employment?
There are a number of employment situations in existence varying according to whether the person is in full or part time employment, and to the category of employment - open, supported, sheltered, self-employed, or family concern (See Table 1 below).
TABLE 1: Types of Employment
OPEN
SHELTERED WORKSHOP
SHELTERED
PLACEMENT
SELF
EMPLOYED
FAMILY
CONCERN
FULL
Full & Open
Full Time
Full time Sheltered
Full time Self- employed
Working full time in family business
PART TIME
Part time Open
Part Time
Part Time Sheltered
Self-employed but only part time
Working part time in the family business
I was able to find a few people who were working in a family business either part time or full time. The family had created a position for the person such that a job was secured for life. A few people were also self-employed. This appeared to be a difficult situation as work was never guaranteed. This often meant that, what was intended to be a full time occupation tended towards part time work. Indeed, two people had set up their own businesses and had subsequently failed, now were unemployed.
In the U.K. there are two forms of sheltered work placement. First, there are special units set up by local authorities and charities which provide ‘sheltered work’ for individuals with a physical or a cognitive disability who are unable to find open employment. These are known as ‘Sheltered Workshops’. However, there is another form of sheltered employment. If an individual is able to perform at least 30% of the work of an able bodied peer then (if companies are willing to take on such a person) the individual is given a full time (or part time) job in which the company pays 30% of the salary (or whatever proportion of the normal salary that position would attract according to how much the employee is able to perform on assessment). The remainder is made up by the Government. This was established in 1985 and is known as the Sheltered Placement Scheme (SPS). There is a drawback however, each area is given a quota, a number of people it is able to place in this form of sheltered employment. Should this quota be reached (it varies according to the population of the area in question) then the next individual seeking employment under this scheme, even though a position may exist, has to wait until another person retires, leaves the job, or dies. In reality, people do not have to wait as there is usually someone leaving or moving on. However, if the number of people with disabilities seeking employment was to rise then problems would be caused by the sheltered employment quota system.
I was interested in people in both full or part time open employment. Also included was anyone who came under the category of sheltered employment but not sheltered workshops. It has been suggested that the sheltered work setting and the development of augmented communication skills are often mutually antagonistic:
Among the skills often cited as Aneeding work” in sheltered workshops are those related to communication and social interaction. The logic is that, in order for people to work in the Areal world” with nondisabled co-workers and employers, they will need to be able to communicate either through speech or through some form of augmentative communication. And what better place to work on work-related communication skills than in a sheltered work setting! The problem is that, like Amilitary intelligence”, AJumbo shrimp”, and Aprogressive conservative”, the pairing of "augmentative communication” and Asheltered workshop” is an oxymoron. Communication in general, and augmentative communication in particular, is antithetical to the value system, opportunities, and types of relationships available in sheltered workshops. (MIRENDA P. 1995 page 13)
I was also interested in people who were self employed and those in a family business but would want to ask why they were in this position. Was it because no other job was open to them? Had they tried to find a job? I am in no way implying that these forms of occupation are not worthwhile but, for the purpose of this paper, I wanted to see just how many people were able to find work in the vocational market place through the standard channels.
What did I mean by disabled?
There are a number of categories of disability and I was asked repeatedly what I meant by the term disabled. The question raised some interesting issues. In order to qualify for a number of government funded grants to both the employee and to the employer, the individual seeking work must have registered as disabled. The Disabled Persons Register is voluntary (although a person has to register in order to achieve certain grants) and administered by the DEAs (Disability Employment Advisers) found in every Job Centre (these are centres for all people seeking employment based in most large towns and cities). It relates only to employment and is not connected with any other register that may exist for housing or social service purposes. The person registering is entitled to a number of benefits:
C help in getting and keeping a job;
C help with the cost of travelling to work;
C equipment for the period of employment if it is necessary to carry out the job;
C employment under the Sheltered Placement scheme or in a Sheltered Workshop.
In order to be eligible to register the individual must:
C have a health problem or disability which makes it substantially more difficult to get or keep a job;
C have a health problem or disability which is likely to last 12 months or more;
C be in work, or self employed, or want to work and have a reasonable prospect of being able to do so;
C be above school leaving age.
On registering the individual is given a certificate (normally called the Green Card) which can last for a number of years depending upon the nature of an individual’s disability. There are a number of problems with basing any research on statistics compiled from this register. First, a person whose sole disability is a severe communication impairment may decide not to register and thus not qualify for help under the scheme. Many people with disabilities refuse to register as a political act. They see it as demeaning to do so to get help which is seen as a right and not a charity. The third criteria ‘want work and have a reasonable prospect of being able to do so’ seems open to abuse although there is no evidence that this is the case. Because the expectation of employment of many people with disabilities’ is extremely low few people actually get as far as seeking open employment though the ‘Register of Disability’.
Only people with a congenital condition or acquired in early childhood were included in the survey. There were several reasons:
C The task, in the time I had available, was proving to be extremely difficult. Facts and figures did not appear to exist or, at the very least, were very difficult to find. The smaller of the two tasks was to research the number of people with congenital disabilities. Any findings in this area might suggest the likely outcome of research for people with acquired problems.
C People with acquired problems may have been in work when the originating trauma occurred. The work place was kept open until the individual was fit to return.
C One way of assessing the quality of the educational and vocational system that exists for people with special needs is to analyse the numbers of people with congenital problems achieving work. People with acquired problems may not have travelled this road.
What did I mean by person using AAC?
Some people had no idea what was meant by an augmentative communication system and proceeded to tell me about the number of people they had helped to find employment through the provision of a computer with a voice recognition system or a screen reader. Having explained that statistics on this area was not what was required, it became necessary to delimit what was meant by both using and AAC.
After some thought, using was replaced by Using AAC as the primary means of communication. This was to make a distinction between a system in full use and a system which had been supplied but was only being used in a limited manner. This caused further problems. Many people said that they thought they knew of a person who was in employment but were not sure if the AAC system was in use. The individual’s speech impairment in these instances was obviously no barrier to finding and keeping a job and would be an interesting area of study in itself. However, the area of study was people who were using a system of AAC as their primary means of communicating, not those who simply had a system.
What did I mean by AAC?
Were screen readers, writing down messages on pieces of paper, or typing onto a laptop screen included as systems of AAC? It is a difficult demarcation. Any line that is drawn between one end of the continuum and the other is arbitrary at best. What should be included and what should not? I wanted to include anyone using an aided system, whether high or low-tech and both with and without voice output. However, this would include a typewriter. It was easier to say what would not count as an AAC system rather than those that would. The Canon Communicator (though the latest version has significantly more facilities), in its simplest form, is a typing system little different to a portable typewriter. There is, however, an important difference. The Canon Communicator was specifically designed for the purpose of communication (in the AAC sense). Thus, the specification was for dedicated systems or, at the very least, devices which had been adapted such that their primary purpose became the provision of augmentative communication.
Thus the task became to find the number of people with a congenital disability who used a dedicated form of AAC as their primary means of communication working in open employment or on the sheltered placement scheme* in the United Kingdom. (* not in sheltered workshops)
The law, employment, and people with disability
There are a number of laws relating to both disability and employment in the UK which are worthy of mention here. The situation is changing rapidly. At the time this paper was written, a 102 page consultation paper entitled ‘A Consultation on Government Measures to Tackle Discrimination Against Disabled People’ was published. It proposed (among other things) that the existing quota scheme be abolished and replaced by a statutory right of non-discrimination in employment. This appeared to be in response to the outrage caused by the failure of a private member’s bill (Labour MP Roger Berry’s ‘The Civil Rights [Disabled Persons] Bill’ - similar in proposals to the Americans with Disabilities Act) to be enforced after the Government sabotaged it by tabling 82 amendments.. This Bill proposed radical changes to the civil rights of people with disabilities. Even the then Minister for the Disabled’s (Nicholas Scott) daughter Victoria (who is co-ordinator of the disabled action group ‘Rights Now’) has publicly criticised the government and called for her father to resign over this issue.
The Government does not accept a concept of rights for disabled people.
We can accept nothing else. (SCOTT V. 1994) (The daughter of the then Minister for the Disabled)
The Disabled Persons (Employment) Act of 1944 was responsible for setting up the Disabled Persons Register and made it law for all employers with a workforce of over 20 people to give employment to a quota of disabled persons (currently 3%). This became known as the ‘Quota Scheme’. Even the Government freely admits the quota scheme is unenforceable and has never worked (PARTRIDGE C. 1994). The ludicrous situation is made clear by the statistics involved. There are 6,000,000 people with disabilities in Britain (3.5 million of working age - based on extrapolation of figures from Commission of the European Communities 1988) and yet only 371,734 are ‘registered disabled’(July 1994)(Interestingly, the figure is falling 936,000 in 1950 and 389,000 in 1986). Further, the three percent quota of the current workforce amounts to some three-quarters of a million people. Thus, there should be two jobs for every person who is already registered. However, on average, firms are employing less than 1% of people registered as disabled with only 27% of firms actually meeting the quota (WORMAN D. 1989). Even government departments and local authorities are failing to meet the set standard with 43 local Authorities not employing any people registered as disabled (TUC 1993). If all 3,500,000 people of working age with a disability were to register tomorrow (an unlikely event), there would be a serious shortage of places available under the scheme and the wait for a sheltered placement would be greater than the average lifespan. The figures on the unemployment of people with a disability when compared with that of the total working population consistently show a percentage ratio of approximately 2:1, that is the unemployment rate amongst disabled people is at least Atwice that for the working population as a whole” (WALKER A. 1982, COMMISSION OF THE EUROPEAN COMMUNITIES 1988, FRESHWATER K. & LEYDEN G. (1989), WORMAN D. 1989, See also YOUTHAID 1992.)(In the USA the unemployment rate for people with disabilities is also high - between 65% and 76%. See DICKERSON L. 1995 page 32, BRYEN D. 1995 page 36). Employers are six times more likely to turn down a person with a disability for an interview, even if their qualifications and experience are identical to those of a non-disabled applicant (SMITH S. 1992):
Finding employment is still very difficult for someone with a visible disability. Such people must send out more resumes and make more contacts than able-bodied people or people with hidden disabilities. Even among people with visible disabilities, AAC users can expect to have a more difficult time finding employment. (SEGALMAN R. 1995 page 69)
Indeed, British people with disability fare far worse than their European counterparts in the vocational marketplace (GRAMMENOS S. 1993) and, even in 1995, people are still being refused jobs for which they are qualified on the grounds of their disability alone (See - BRADBURY D. 1995). It is often stated that people with physical disabilities may be more suited to careers in information technology:
AIT and computers are good sources of jobs for disabled people. The emphasis is on workers’ value-added expertise and problem solving skills which make matters of physical ability irrelevant” said Janet Barrett from the Employer’s Forum on Disability. (ABILITY 1996 page 9)
However, yet again, there is no evidence to suggest that such posts are being made available:
there is no indication that disabled workers are adequately represented even in these fields. 80% of employers do not employ the minimum 3% quota of registered disabled people formerly recommended by government. (ABILITY 1996 page 9)
Despite recognised skills shortage within the computer industry, there is comparatively little effort to recruit or retain disabled people who have these skills - this is more a matter of ignorance rather than ill-will. But it can’t be good business for anyone. (BUSBY G. quoted in ABILITY 1996 page 11)
A scheme entitled ‘Access to work’ (EMPLOYMENT SERVICE 1994) has been introduced. From the 6th June 1994, the range of services to both people with disabilities and their employers was extended and simplified. Under the ‘Access to Work’ scheme ,19,000,000 was originally set aside in 1996 to provide equipment, help in terms of support, adaptations to cars and transport costs and alterations to premises or working environments for individuals registerable as disabled. Each individual is entitled to help up to the value of ,21,000 over a five year period. This appears to be a fairly flexible figure (a case may be made for further funding, and it does not appear to have to be evenly spread over the five years) and the figure may be renewed after the first five years. The ‘Access to Work’ scheme is run by local PACT teams (Placement, Assessment And Counselling Team) and the ADCs (Ability Development Centres) which are evenly spread throughout the UK. This scheme has been criticised by disability groups. A RADAR spokesperson is on record as stating that the scheme Aamounted to little more than ,2 for every person with a disability” (THERAPY WEEKLY JUNE 2 1994).
Note: The ,19,000,000 pound figure quoted above is under some threat from a ,7,000,000 cutback and this is giving much cause for concern (See PYKE N. 1996)
Some existing grants are however Aa standing joke” (THERAPY WEEKLY AUGUST 6 1992). For example the ‘Disability Working Allowance’ which was designed to help disabled people with disabilities in employment had 13,000 applications in 1992 but only 1,000 were successful. A Benefits Adviser quoted in Therapy Weekly said, AWe have yet to find anyone who can claim it who would be better off.”
After talking with a number of DEAs (Disability Employment Advisers) from PACTs and the Technical Officers at the ADCs I am reasonably convinced that should a person require the provision of an augmentative communication aid in order to gain or to maintain employment there would be no problem with finance. The cracks start to appear when it is asked how many such aids have been supplied under the present and previous provision for equipment. In nine ADCs surveyed (there are nine in Britain) only one had ever (to their knowledge) supplied a dedicated system of Augmentative Communication under any scheme allowing for the provision of equipment. In the one instance, the Technical Officer concerned was unable to confirm the details and did not know if the lady had a congenital or acquired disability.
TABLE 2: STATISTICS FOR UK
Number of people with disabilities
6,000,000
Number of people with disabilities of working age
3,500,000
Number of people registered disabled (1994)
371,734
Number of people with a severe communication impairment
800,000
Number of people of working age with a severe communication impairment
320,000
Number of people in UK without speech as result of development disorder
225,000
Number of people to the age of 19 with a serious communication impairment requiring an AAC system
75,000
Number of children born every year with a motor handicap and a serious communication impairment requiring an AAC system
600
Number of people to the age of 19 with a motor handicap and a serious communication impairment requiring an AAC system
11,900
As the PACT teams operating within each ADC area have a certain amount of autonomy with regards to the provision of equipment (providing the costs involved do not exceed a specified amount), the ADCs did not know if the local PACTs had supplied an AAC system to a person seeking employment. Although only a few of the DEAs in PACTs around the country were contacted, again the picture presented was bleak - no one could remember ever having provided such a piece of equipment. Two people had been funded for a VOCA by the Employment Service, one of these was in full time work, the other presently unknown. Head Office, situated in Sheffield, stated there were no records of this sort available for analysis and were unable to help further, suggesting alternative sources for enquiry. One of these sources led to the discovery of the PSS (PACT Support System) which is a database of all the equipment provided to clients at a local level. This is a new scheme and all the relevant data has not yet been entered by many of the PACTs (perhaps by end 1995). However, it does not appear the information will be correlated centrally. To discover the UK picture one would have to approach all the 72 PACTs. Even more disheartening was a comment made by a senior member of staff that the individual databases probably would not be able to provide a field search of information on type of employment, nature of disability, and provision of equipment.
It appears there is no problem in funding an AAC system but only a small number of people have come forward to request one. It could be argued that provision of an AAC system must come before an individual enters the vocational marketplace. In the few cases where people were found using AAC in full or part time employment the equipment was provided by alternative sources at an earlier date.
The Case of E: An interesting situation came to light in the investigation. It concerned a lady who had been provided with both an electric wheelchair and a VOCA by the Employment Service. However, these were seen as items solely for use at work. She was not allowed to take them outside the office unless on an official errand. Thus, the ridiculous situation was that E was expecting to have to purchase an identical wheelchair and an identical VOCA for use outside of office hours. She would arrive at work in her own chair and leave it in reception, transferring to the office chair. The VOCA would be swapped for an identical system during office hours but removed before she went home with her own VOCA. A number of people had tried to point out the ludicrousness of this situation but to no avail. These items were provided by an employment grant specifically for work and not for leisure or home use.
Or the unrealistic edicts like the PACT office which reprimanded a wheelchair rider for Aundue wear and tear” and instructed her only to use the wheelchair which they had purchased for her while in her office building, or on official business. (ABILITY 1996 page 12)
Specialist Groups and Centres
There are a number of Groups, Charities, and Centres specialising in Augmentative Communication throughout the U.K. (Henceforth, referred to as GCCs). Many of these were contacted in the hope that they would be able to furnish further information on the statistics involving people in employment or, at least, point out the direction of research and data.
All the specialist groups were helpful, but much information was anecdotal and other information fell into the category of AI am not sure but I think X is using one and I think X has a job at least part time”. Apparently, one GCC commissioned a report on the preferences of adults in higher education and employment for AAC systems but was unable to find a large enough corpus of people to study. However, no one at this particular GCC could confirm or deny that the study ever took place - AMust have been before my time.”
What then of the research that does exist? The final number of people using AAC in employment from the GCC source amounted to two with two others working for family concerns and one in part-time employment.
Data and Research
There are 6,000,000 people with disabilities in the UK of which approximately 800,000 have a severe communication disorder (See Table 2) which would warrant the use of some form of AAC system (ENDERBY P. & PHILLIPP R. 1986). Of these approximately 320,000 are of working age.
A number of research documents did come to light (there is no pretence that these are all that exist) and although a few didn’t specifically address the topics of AAC and employment they contained information which was of use:
Ingram T., Jameson S., Errington J., & Mitchell R. (1964)
A follow up study of 200 young adults with cerebral palsy in Scotland found that the less severe the level of disability the greater the likelihood of open employment. Factors adversely affecting employment chances included any speech impairment.
Pollack G. & Stark G. (1969)
A follow up study of 67 children into young adulthood in Scotland. The study found that while the severity of the disability was a major factor in gaining employment, speech impairment directly affected the chances of open employment in people who did not have a severe disability.
Wilson M. (1970)
A study of 343 people with cerebral palsy from the age of 9 to the age of 18. 31 went into open employment and 23 into continuing education. The study found that the more severe the disability the less the chance of entering open employment.
Hirst M. (1987)
A study of 274 young adults with a physical disability. Only 11 people in the survey had achieved open employment by the age of 21 with the majority in Adult Training Centres. Those who gained employment were the least disabled in the survey. No one with a speech impairment achieved employment status. Indeed Athose without speech .... were more likely to have been wholly unoccupied at some time during the post-school period” (HIRST M. 1987 pp. 8)
Thomas A.P. (1988)
A survey of 107 young adults with physical disabilities in the London area. No mention is made of any of the people in the survey having any form of employment.
Murphy J., Marková I., Moodie E., Scott J., & Boa S. (1992)
Comprehensive Scottish survey of 225 people with cerebral palsy who already were using AAC. Of the people in the study, 104 were of working age with 32 of these using two systems (high & low tech). The majority of the sample (162 people) had only been using a system of AAC for under three years. The study found only one person in employment part time.
Masterson G. & Morris D. (1994)
A small survey of just nine people with cerebral palsy between the ages of 15 - 24 detailed two people in full time employment in England and one person in part time employment in Scotland. The two people in full time employment in England were both employed by the same marketer of Augmentative Communication Aids and it is unlikely that they would have been in employment had these positions not arisen.
Barnett S. (1994)
A study of 33 young adults with cerebral palsy in the London area aged between 18 and 33. None of the study who had gained employment (5 people) used an AAC system.
Jones A.P. (1994)
I have been involved with the education and training of people who need Augmentative Communication since 1986. In that time, at the College where I previously worked, some 45 students have acquired AAC skills to varying degrees of ability. However, only one is now in full time employment. He is working for a company that markets communication aids.
Fast Track (1994)
Not a study but a scheme administered by the Spastic Society (now ‘SCOPE’) to get people with cerebral palsy into work. Although in its infancy, of the 52 people so far successfully involved not one has used any system of AAC.
The Communication Aid Marketers and Manufacturers
A source of information on the matter of employment is the companies throughout the UK who either manufacture or market (or both) AAC systems. I am keen not to make this a competitive issue so that no false claims can be made about one system over another regarding employment opportunities. This would oversimplify the situation when many factors are involved. Some systems, for example, require literacy skills. The literate person has a greater likelihood of achieving employment. One would expect that such systems would form a higher population in the vocational marketplace, especially among people with acquired conditions.
All the companies contacted were most helpful. A number said they had records of many people with acquired disabilities who were already in employment at the time of onset but, overall, there were very few who knew of anyone with a congenital speech impairment using an AAC system in employment. The companies were only able to point to four people in the UK in full time employment and two in part time employment. Of the four, two were employed full time by one of the companies itself. The same company employed several people using AAC on a casual basis one day at a time as and when necessary.
Comments
There appear to be very few people in the United Kingdom with a congenital disability using a system of AAC in open employment. The total figure may be as few as ten. There may be people not yet discovered and the research is continuing. It is difficult to say why the findings were so poor. Indeed I would hesitate to make any substantial claims at this point. However, the following are important factors in employment:
Expectation Money Passivity Legislation Obstructions Young Market Education Norm Technology
Expectations, beliefs, and attitudes
The expectancy of work for people with disabilities is low among potential employers, people who use AAC systems, and the significant others who live and work (not in the employment sense) with them:
Why are so few people with developmental disabilities employed? The reasons are many and complex. First, and perhaps, most importantly, are low expectations -- expectations that people with developmental and other disabilities cannot or should not work because of their disability. These low expectations lead to learned helplessness... (BRYEN D. N. 1995 page 37)
I was recently told that children with physical disabilities and accompanying learning difficulties only need four items of vocabulary:
‘Can I have a drink please?’, ‘Can I have something to eat please?’, ‘Can I go to the toilet please?’, ‘I am unhappy about something.’
When asked if the four were a starter set of vocabulary the reply was:
ALet’s face it, they are going to be in care all their lives. What more do they need to say?”
This was a special educator. Sadly, similar attitudes are not uncommon.
Money
Finance and funding does not appear to be problematic through the ‘Access to work’ scheme, if a person can find or has hope of employment. However, for many aided forms of communication, which require support and tuition in order to develop the skills necessary for their use, this is too late. Systems which rely on literacy skill may have a virtually immediate transparency but the support and training of the education system is directed primarily at the development of such skills. Those who are pre-literate are at an obvious disadvantage if the provision of a suitable aid has to wait until there is a glimmer of hope of employment. Stephen Hawking summed it up when he told the press at the opening of the Science Museum exhibition on communication in London in October 1993:
People can only get synthesizers if they can raise the cash. That’s not good enough. People should not be condemned to be just vegetables. People should campaign to get these devices on the National Health Service. (HAWKING S. 1993)
It should be made possible to gain open employment without the loss of the grants and allowances. No one should be worse off by entering employment. No one should feel that they will more comfortable financially by not looking for work. However, this should not be achieved by reducing the present grants and allowances.
Passivity and Learned Helplessness
Learned helplessness and passivity are also major obstacles in encouraging people to seek work. People are not born passive; they learn to be passive in their interactions with others. Attitudes and practices must change.
Learned helplessness often becomes the greatest crippler of all. Not surprisingly, therefore, many people with developmental disabilities have learned that it is easier to accommodate to other’s perceptions, other’s low expectations, than it is to set higher expectations for themselves or to demand access to the necessary supports and services they need to find and attain a job. Such young people have instead learned to be passive, to view themselves as being helpless (WILLIAMS B. 1995)
Legislation
The new regulations concerning the disabled and employment and the changing face of education for those with special needs may serve to alter the situation in the future. However, groups concerned with lobbying for a better deal for the disabled community are sceptical about progress. The Government’s sabotage of the Civil Rights (Disabled Persons) Bill recently adds strength to their claims. This is not the first time that this has happened. The Government was responsible for the ‘talking out’ of Alf Morris ‘s Civil Rights (Disabled Persons) Bill in 1992.
Obstruction Of Occupations On Offer (physical and psychological)
One of the proposals of the new Civil Rights (Disabled Persons) Bill, which did not become law, was the requirement that workplaces should be accessible to people with disabilities. While grants are available under the ‘Access to Work’ scheme to adapt offices and provide access, these are limited to ,21,000 per person over a five year period unless there is appeal to a higher authority. However, access is still a problem - even in the United States:
After years of legislation and advocacy promoting the social model of disability in the US, it now seems as if the medical model is making a comeback. Crudely, if given the picture of a wheelchair user stuck at the bottom of a staircase, the social model would identify the disability as the inaccessible environment; the medical model would locate the disability in the person’s inability to climb the staircase. According to this regressive model, the problem lies with the individual who does not have access to the environment, rather than the parties who commissioned the environment to be constructed in that way, or the people responsible for its design. (ABILITY 1996 page 16)
Young field
AAC is still in its infancy. Many people, who are of a working age, have had a system of AAC for under three years (MURPHY J., MARKOVÁ I., MOODIE E., SCOTT J., & BOA S. 1992). Others who use AAC, are still working their way through the education system. It is to be hoped that, there will be more opportunities open to them in the future and the situation will slowly begin to improve. There is no room for complacency; there must be action to ensure that the situation does not stagnate.
Market Place
It would be foolish to ignore the current state of the vocational marketplace as a factor in gaining employment for people using AAC systems. The more people who are unemployed the more difficult it will be to find employment. There should be equality of opportunity. A person with the necessary qualifications and skills should not have a lesser chance of employment because of disability or use of a system of AAC.
Further, M stands for Mobility in the Market place. To have greater potential to achieve employment a person may have to move areas. If a person with a disability is tied to a particular location through housing, grants and services, this will lower the range of options available for employment.
Education
The educational system itself is also at fault. There is difficulty in finding funding for a system of AAC such that there is no guarantee of provision of a system on recognition and assessment of need. Many years may pass. Implementation practices leave much to be desired with staff untrained and often unaware of the potential (See, for example, MILLAR S. 1990; MILLER C. 1991a, 1991b, and RATCLIFF A. & BEUKELMAN D. 1995 for a review of professional preparation in the USA). Often, the expectation of and time allocated to augmentative communication is poor. Typically, strategies that were in use before the provision of an aid are continued after the aid has been supplied. These strategies may have the effect of delaying or actually preventing the development of AAC skills.
Education also includes the education of the employers and co-workers (indeed all significant others). Worman (WORMAN D. 1989) lists 20 blockages and barriers which may prevent people with disabilities from obtaining employment. There are continuing ‘myths and stereotypes’ which make employers less likely to take on a person with a disability (ABILITY 1996 page 9). Indeed, in order to fulfill their quota, employers are more likely to retain employees who become disabled during their working life rather than taking on a person with a disability anew(HONEY S., MEAGER N., & WILLIAMS M. 1993). With a raising of awareness of the issues involved the majority of these barriers could be eradicated.
Offer disability awareness training for all co-workers with whom the employee with a disability will interact. This should smooth the transition for the individual with a disability. And, in many cases, it will also prepare employees to deal with customers who have disabilities. (DICKERSON L. 1995 page 33)
Need New Norms Now
It appears that it is not the norm for people with a severe disability who have a speech impairment to be in employment. Disabled champions of this issue may slowly begin to raise public awareness of the issue. It is to be hoped that attitudes will change over time.
Technology and Training
The advent of new technologies with increased support for communication, ease of access, clarity of voice, potential for growth with an individual, the capability of storing a typical adult vocabulary, increased flexibility, and greater portability should help people to make their voices heard.
In a recent survey of ten people who used VOCAs (SUTTON T. 1994), eight out of ten people said that the three most important things about their VOCA were being able to:
C communicate with anybody;
C use the telephone;
C find or look for employment.
T also stands for training. Training for employment prior to, during transition, and on-the-job. Support for people with disabilities while at work is vital. This will be likely to include:
C further training;
C extra help with procedures;
C simplified routines for some individuals;
C caring and flexible supervision;
C flexible time schedules;
C the support of:
- a personal assistant;
- management;
- co-workers;
- family and friends;
Supported employment was based on a notion that individuals with severe disabilities could contribute effectively and meaningfully in a variety of work settings so long as necessary supports were available in the form of people, technology, and so forth. In order to be successful, it is important that people providing primary support to individuals with severe disabilities, or, direct service providers, begin to view their role more as life enhancers or facilitators and less as careproviders (CALCULATOR S. 1995 page 50)
WORKING 3 - Wasted potential...
.... but the offspring of the inferior, or of the better when they chance to be deformed, will be put away in some mysterious, unknown place, as they should be. (PLATO c. 428 B.C. - c. 348 B.C. The Republic V)
The invalid is a parasite on society. (NIETZSCHE F. 1889)
Being nonverbal is much too hard. For 24 years I did not have any voice. People thought I had nothing to say. Therefore, people looked on me as a nonproductive disabled person. However, a voice enables me to communicate faster, and people think I have a mind. For example, the Office of Vocational Rehabilitation said if I could talk faster I could be employed (TL in BRYEN D. N., SLESARANSKY G., & BAKER D. B. 1995, p. 85)
Everyone can work, irrespective of the nature and severity of their disabilities. Where individuals are not working, they represent a microcosm of failed actualization of opportunities. (CALCULATOR S. 1995 page 49)
Recognize the benefit of employing people with disabilities which inures among their tremendous spheres of influence. Wherever possible and appropriate, aggressively promote employees with disabilities. Those disabilities represent 14% of the population. Their close friends and relatives represent over half the population - a significant perspective customer base for many businesses. (DICKERSON L. 1995 page 33)
Is it unrealistic to expect people with both a physical disability and a speech impairment to obtain work?
Is this field so nascent and our information so scant that we don’t know what we’re doing, or, do we, deep down in our guts believe that most people who use AAC simply aren’t candidates for good jobs? (WILLIAMS M. 1994)
Is it fair to raise a person’s hopes only to have them dashed on the rocks of experience?
Don’t people value leisure time?
Wouldn’t people like more time with their families pursuing leisure interests?
Isn’t a lifetime of leisure the ultimate goal of most people?
The answer to at least three of the above questions is Ano”!
It is not unrealistic to hope that a person with a severe disability and a communication impairment will be able to achieve open employment because there are such people in full time employment. Admittedly these people are rare. Is it any wonder there are so few when the expectations of significant others of the likelihood of employment is so low?
A second issue that should be investigated involves expectations. when expected to fail, neither of these young men were even given the chance to try. However, when given the opportunity, both of these young men surpassed all expectations. As Michael Williams said, AIt’s easy to be an overachiever in the land of lowered expectations.” (McNAIRN P. 1995 page 77)
Many people with disabilities continue to work in a successful and competitive manner. Stephen Hawking is but one example. There are many other less intellectually gifted people who have a career and many others who would if given the opportunity.
The marketplace is a minefield. Too many people chase too few jobs. Is it fair we should encourage our children, our pupils or students to jump in at the deep end with all the potential dangers that implies? If we lead them gently into the shallow end at an early age, teach them to swim before they reach the deep end, they are more likely to survive the experience.
Would we really enjoy a life of leisure? Perhaps. One measure of adult status is employment (WARD K., THOMSON G., & RIDDELL S. (1994)). To be without employment contributes to lack of self-esteem especially for people whose self-esteem is already low or at risk.
Is a lifetime of leisure the real alternative to a person with a severe disability who does not achieve meaningful employment? Where is the funding for this leisurely lifestyle to come from? The individual cannot fund it because grants and allowances do not stretch that far. The State does not have a bottomless purse. In reality, a lifetime of leisure probably means many hours sitting in front of the TV.
After 16, nobody wants to know. There’s nothing at all for us. I’m sorry to say [this] but it’s really, really bad. It’s atrocious. And I know several other parents of handicapped adults who will agree with me. I know it sounds bitter, but they offer drug addicts and alcoholics more than they do for the handicapped. (A Mother’s perception of post school provision as quoted in WARD K., THOMSON G., & RIDDELL S. (1994))
What does it cost to keep someone in a lifetime of leisure? It depends. It depends on the quality of the leisure, it depends on the length of the lifetime, it depends on level of support necessary, etc. One thing can be held as true, in purely financial terms, it is costly. The cost to the taxpayer may easily run into tens of thousands of pounds for each unemployed person every year. While very few people would begrudge their taxes being used in such a fashion the waste of potential is staggering:
I am blessed with qualifications. There are my two Master’s Degrees, my 15 years experience in planning, and my computer skills. Still, at the time of this writing, I have no job. (JOYCE M. 1994)
An employed person contributes to the wealth of the nation through taxes, whether directly though income tax, or indirectly through purchase tax. A person in employment may be able to help support the cost of the care (although this issue must be carefully examined to ensure that people are not in a worse financial state as a result of finding employment. See for example - KREZMAN C. 1994). Even if all the grants and allowances were to continue unaltered there would still be a net financial gain to the country through taxation, national insurance, etc. Adaptations to premises would undoubtedly soak up some of the gain - initially - but would make it possible for others to benefit. Access to the workplace benefits many people - the elderly, mothers with pushchairs, people with temporary illnesses, etc.
The financial issue is but one aspect of the wasted potential. A person may measure self-esteem against employment. Indeed, in seven recent definitions of adult status, six included employment and the seventh (FEU 1991) talked of ‘economic self-sufficiency’ (See AFFLECK J., EDGAR E., LEVINE P., & KORTERING L. 1990, BROTHERSON M., TURNBULL A., BRONICKI G., HOUGHTON J., ROEDER-GORDON C., SUMMERS J., & TURNBULL H. 1988, CERI 1986, FEU 1991, GREGORY J., SHANAHAN T., & WALBERG H. 1989, LITCHENSTEIN S. 1989, WARD K., RIDDELL S., DYER M., & THOMSON G. 1991). Further, in a recent study by Sutton (SUTTON T. 1994) when asked ‘What are the three major changes that having a communication aid have brought to your life?’, 80% of those interviewed included the ability to seek or to hold employment. Thus, employment should not just be seen in purely financial terms:
Employment is not really about money, but the quality of a person’s life. It helps to define how you feel about yourself and how other people perceive you. It allows you to give of yourself to the people you care about and to make a difference in the lives of other people. It creates opportunities for friendships and for learning...... For all adults, including those who benefit from AAC intervention, the issue of employment is basic to survival and the quality of their life. (BLACKSTONE S. 1993)
Employment plays a major role in determining not only our socio-economic status, but also our social identity. To a great extent, we define ourselves and are defined by others in terms of our occupations. (LIGHT J., STOLTZ B., & McNAUGHTON D. 1993)
The idea that individuals can achieve reasonable status in society even if unemployed has yet to gain widespread acceptance. It requires great self-assurance for most young people to accept unemployment and considerable inventiveness to lead fulfilling lives without the discipline and opportunities of work. Those with handicaps have difficulties enough in achieving an acceptable place in society and certainly they, and the voluntary organisations who speak for them, are in no doubt that useful work should be the object of transition. To add the objective of significant living without work to the other burdens of disability is seen as wrong and manifestly unfair. (CERI 1983)
Third, in the new mosaic, people with severe intellectual disabilities will graduate from school and be supported as they are employed in real jobs in community settings (MOON M. , INGE K. , WEHMAN P. , BROOKE V. & BARCUS J. 1990; WEHMAN P., WOOD W., EVERSON J., GOODWYN R., & CONLEY S. 1988). They will work in hospitals, restaurants, and .... hotels. they will work in our offices - some doing simple clerical tasks, others using the same computers that we do. Their communication displays will be used for conversation as well as to assist them to manage their jobs through picture schedules and step-by-step pictured recipes. They will make real money and pay real taxes; and go to staff picnics, Christmas parties, and out for a beer on Friday evenings with their co-workers, because they are valued for who they are and for the jobs they do. (MIRENDA P. 1993 page 6)
AUnemployable” individuals may be confronted with negative economic consequences, be denied full access to their community, be perceived by others (and themselves) negatively, and be confronted by people who have low expectations of them. (CALCULATOR S. 1995 page 50)
It seems certain paid employment is an important factor in a person’s self-esteem and adult status. At present those that do gain employment are likely to be very determined, positive, young people.
These young adults are aware of the stigma surrounding people with disabilities and are not willing to accept it passively. Such stigma causes objective isolation, subjective loneliness and alienation. (WARD K., THOMSON G., & RIDDELL S. 1994)
A lack of expectation of employment for a person on the grounds of a disability is not only a waste of financial potential but of human resources.
As director of the Pennsylvania Assistive Technology Centre, a statewide educational agency serving over 1500 school aged students with assistive technology, it has been a wonder and a revelation to hear the wishes and desires of hundreds of students expressed as their main goal of life: to get a job (HANEY C. 1993 )(my italics)
The invalid is a parasite on society. (NIETZSCHE F. 1889)
Being nonverbal is much too hard. For 24 years I did not have any voice. People thought I had nothing to say. Therefore, people looked on me as a nonproductive disabled person. However, a voice enables me to communicate faster, and people think I have a mind. For example, the Office of Vocational Rehabilitation said if I could talk faster I could be employed (TL in BRYEN D. N., SLESARANSKY G., & BAKER D. B. 1995, p. 85)
Everyone can work, irrespective of the nature and severity of their disabilities. Where individuals are not working, they represent a microcosm of failed actualization of opportunities. (CALCULATOR S. 1995 page 49)
Recognize the benefit of employing people with disabilities which inures among their tremendous spheres of influence. Wherever possible and appropriate, aggressively promote employees with disabilities. Those disabilities represent 14% of the population. Their close friends and relatives represent over half the population - a significant perspective customer base for many businesses. (DICKERSON L. 1995 page 33)
Is it unrealistic to expect people with both a physical disability and a speech impairment to obtain work?
Is this field so nascent and our information so scant that we don’t know what we’re doing, or, do we, deep down in our guts believe that most people who use AAC simply aren’t candidates for good jobs? (WILLIAMS M. 1994)
Is it fair to raise a person’s hopes only to have them dashed on the rocks of experience?
Don’t people value leisure time?
Wouldn’t people like more time with their families pursuing leisure interests?
Isn’t a lifetime of leisure the ultimate goal of most people?
The answer to at least three of the above questions is Ano”!
It is not unrealistic to hope that a person with a severe disability and a communication impairment will be able to achieve open employment because there are such people in full time employment. Admittedly these people are rare. Is it any wonder there are so few when the expectations of significant others of the likelihood of employment is so low?
A second issue that should be investigated involves expectations. when expected to fail, neither of these young men were even given the chance to try. However, when given the opportunity, both of these young men surpassed all expectations. As Michael Williams said, AIt’s easy to be an overachiever in the land of lowered expectations.” (McNAIRN P. 1995 page 77)
Many people with disabilities continue to work in a successful and competitive manner. Stephen Hawking is but one example. There are many other less intellectually gifted people who have a career and many others who would if given the opportunity.
The marketplace is a minefield. Too many people chase too few jobs. Is it fair we should encourage our children, our pupils or students to jump in at the deep end with all the potential dangers that implies? If we lead them gently into the shallow end at an early age, teach them to swim before they reach the deep end, they are more likely to survive the experience.
Would we really enjoy a life of leisure? Perhaps. One measure of adult status is employment (WARD K., THOMSON G., & RIDDELL S. (1994)). To be without employment contributes to lack of self-esteem especially for people whose self-esteem is already low or at risk.
Is a lifetime of leisure the real alternative to a person with a severe disability who does not achieve meaningful employment? Where is the funding for this leisurely lifestyle to come from? The individual cannot fund it because grants and allowances do not stretch that far. The State does not have a bottomless purse. In reality, a lifetime of leisure probably means many hours sitting in front of the TV.
After 16, nobody wants to know. There’s nothing at all for us. I’m sorry to say [this] but it’s really, really bad. It’s atrocious. And I know several other parents of handicapped adults who will agree with me. I know it sounds bitter, but they offer drug addicts and alcoholics more than they do for the handicapped. (A Mother’s perception of post school provision as quoted in WARD K., THOMSON G., & RIDDELL S. (1994))
What does it cost to keep someone in a lifetime of leisure? It depends. It depends on the quality of the leisure, it depends on the length of the lifetime, it depends on level of support necessary, etc. One thing can be held as true, in purely financial terms, it is costly. The cost to the taxpayer may easily run into tens of thousands of pounds for each unemployed person every year. While very few people would begrudge their taxes being used in such a fashion the waste of potential is staggering:
I am blessed with qualifications. There are my two Master’s Degrees, my 15 years experience in planning, and my computer skills. Still, at the time of this writing, I have no job. (JOYCE M. 1994)
An employed person contributes to the wealth of the nation through taxes, whether directly though income tax, or indirectly through purchase tax. A person in employment may be able to help support the cost of the care (although this issue must be carefully examined to ensure that people are not in a worse financial state as a result of finding employment. See for example - KREZMAN C. 1994). Even if all the grants and allowances were to continue unaltered there would still be a net financial gain to the country through taxation, national insurance, etc. Adaptations to premises would undoubtedly soak up some of the gain - initially - but would make it possible for others to benefit. Access to the workplace benefits many people - the elderly, mothers with pushchairs, people with temporary illnesses, etc.
The financial issue is but one aspect of the wasted potential. A person may measure self-esteem against employment. Indeed, in seven recent definitions of adult status, six included employment and the seventh (FEU 1991) talked of ‘economic self-sufficiency’ (See AFFLECK J., EDGAR E., LEVINE P., & KORTERING L. 1990, BROTHERSON M., TURNBULL A., BRONICKI G., HOUGHTON J., ROEDER-GORDON C., SUMMERS J., & TURNBULL H. 1988, CERI 1986, FEU 1991, GREGORY J., SHANAHAN T., & WALBERG H. 1989, LITCHENSTEIN S. 1989, WARD K., RIDDELL S., DYER M., & THOMSON G. 1991). Further, in a recent study by Sutton (SUTTON T. 1994) when asked ‘What are the three major changes that having a communication aid have brought to your life?’, 80% of those interviewed included the ability to seek or to hold employment. Thus, employment should not just be seen in purely financial terms:
Employment is not really about money, but the quality of a person’s life. It helps to define how you feel about yourself and how other people perceive you. It allows you to give of yourself to the people you care about and to make a difference in the lives of other people. It creates opportunities for friendships and for learning...... For all adults, including those who benefit from AAC intervention, the issue of employment is basic to survival and the quality of their life. (BLACKSTONE S. 1993)
Employment plays a major role in determining not only our socio-economic status, but also our social identity. To a great extent, we define ourselves and are defined by others in terms of our occupations. (LIGHT J., STOLTZ B., & McNAUGHTON D. 1993)
The idea that individuals can achieve reasonable status in society even if unemployed has yet to gain widespread acceptance. It requires great self-assurance for most young people to accept unemployment and considerable inventiveness to lead fulfilling lives without the discipline and opportunities of work. Those with handicaps have difficulties enough in achieving an acceptable place in society and certainly they, and the voluntary organisations who speak for them, are in no doubt that useful work should be the object of transition. To add the objective of significant living without work to the other burdens of disability is seen as wrong and manifestly unfair. (CERI 1983)
Third, in the new mosaic, people with severe intellectual disabilities will graduate from school and be supported as they are employed in real jobs in community settings (MOON M. , INGE K. , WEHMAN P. , BROOKE V. & BARCUS J. 1990; WEHMAN P., WOOD W., EVERSON J., GOODWYN R., & CONLEY S. 1988). They will work in hospitals, restaurants, and .... hotels. they will work in our offices - some doing simple clerical tasks, others using the same computers that we do. Their communication displays will be used for conversation as well as to assist them to manage their jobs through picture schedules and step-by-step pictured recipes. They will make real money and pay real taxes; and go to staff picnics, Christmas parties, and out for a beer on Friday evenings with their co-workers, because they are valued for who they are and for the jobs they do. (MIRENDA P. 1993 page 6)
AUnemployable” individuals may be confronted with negative economic consequences, be denied full access to their community, be perceived by others (and themselves) negatively, and be confronted by people who have low expectations of them. (CALCULATOR S. 1995 page 50)
It seems certain paid employment is an important factor in a person’s self-esteem and adult status. At present those that do gain employment are likely to be very determined, positive, young people.
These young adults are aware of the stigma surrounding people with disabilities and are not willing to accept it passively. Such stigma causes objective isolation, subjective loneliness and alienation. (WARD K., THOMSON G., & RIDDELL S. 1994)
A lack of expectation of employment for a person on the grounds of a disability is not only a waste of financial potential but of human resources.
As director of the Pennsylvania Assistive Technology Centre, a statewide educational agency serving over 1500 school aged students with assistive technology, it has been a wonder and a revelation to hear the wishes and desires of hundreds of students expressed as their main goal of life: to get a job (HANEY C. 1993 )(my italics)
WORKING 4 - Good for Peter. Good for Paul?
Since speech is involved in much that they do, they (and others) doubt their abilities in many respects. If no help is goven, low expectations may be carried into their working and later social lives. (DALTON P. 1994 pp. 3 - 4)
The cartoon and verse raise the question ‘If it’s good for Peter then why not for Paul?’ Differential and preferential treatment of the young disabled child may in fact hinder, if not negate, any chance of normal development and significantly affect the child’s future prospects:
Over manipulation of the environment in the name of accommodation may undermine adaptation and adjustment skills and therefore contribute to helplessness. Individuals with special needs will most likely require a broader and stronger reserve of adaptive skills than their not so obviously disabled peers in order to ‘make it’ in the real world. (SWEENEY L. 1993)
The cartoon and verse also hint at the issue of integration and inclusion. It is not the intention of this manual to discuss the issues involved in integration but there are some considerations which are worthy of mention:
C The isolation of an integrated user of AAC must not be used as an excuse for failure to master the system. Any failure should be seen as the responsibility of the educational establishment and adequate steps should be taken to ensure mastery through the Individual’s Education Plan.
C An integrated person’s use of an AAC system must not be devalued by classroom practice, routine, or by a pejorative opinion of any staff member:
For instance, a 10-year-old, nonverbal Pennsylvania quadriplegic has been thrown out of school for Adisruptive” behavior. The child was not picking fights, carrying a weapon or selling drugs. His transgression is to Aspeak” by tapping a pointer onto his communication board. The principal felt the pointer’s clicking sound was Adisruptive.” (WOLFE K. 1995 page A19)
C Staff training, even for an isolated user, is essential. It must not be left to self-study and self-financed courses:
.... Special Education teachers like Speech Therapy students, are largely left to self-study and project work, if they want to develop their knowledge and experience in AAC. (MILLAR S. 1990)
C The future prospects of an individual with a significant speech impairment are directly proportional to the individual’s command of an AAC system.
Very few professional jobs are not based on communication. Even computer scientists have to communicate with computers and with other computer scientists. Professional jobs require communication. If you cannot communicate, you will not get hired. Period. (CREECH R. 1993)
C The integrated user should have the opportunity to meet other AAC users from time to time.
C Peer involvement is essential to help individuals using AAC systems with their self-esteem and confidence.
The cartoon and verse raise the question ‘If it’s good for Peter then why not for Paul?’ Differential and preferential treatment of the young disabled child may in fact hinder, if not negate, any chance of normal development and significantly affect the child’s future prospects:
Over manipulation of the environment in the name of accommodation may undermine adaptation and adjustment skills and therefore contribute to helplessness. Individuals with special needs will most likely require a broader and stronger reserve of adaptive skills than their not so obviously disabled peers in order to ‘make it’ in the real world. (SWEENEY L. 1993)
The cartoon and verse also hint at the issue of integration and inclusion. It is not the intention of this manual to discuss the issues involved in integration but there are some considerations which are worthy of mention:
C The isolation of an integrated user of AAC must not be used as an excuse for failure to master the system. Any failure should be seen as the responsibility of the educational establishment and adequate steps should be taken to ensure mastery through the Individual’s Education Plan.
C An integrated person’s use of an AAC system must not be devalued by classroom practice, routine, or by a pejorative opinion of any staff member:
For instance, a 10-year-old, nonverbal Pennsylvania quadriplegic has been thrown out of school for Adisruptive” behavior. The child was not picking fights, carrying a weapon or selling drugs. His transgression is to Aspeak” by tapping a pointer onto his communication board. The principal felt the pointer’s clicking sound was Adisruptive.” (WOLFE K. 1995 page A19)
C Staff training, even for an isolated user, is essential. It must not be left to self-study and self-financed courses:
.... Special Education teachers like Speech Therapy students, are largely left to self-study and project work, if they want to develop their knowledge and experience in AAC. (MILLAR S. 1990)
C The future prospects of an individual with a significant speech impairment are directly proportional to the individual’s command of an AAC system.
Very few professional jobs are not based on communication. Even computer scientists have to communicate with computers and with other computer scientists. Professional jobs require communication. If you cannot communicate, you will not get hired. Period. (CREECH R. 1993)
C The integrated user should have the opportunity to meet other AAC users from time to time.
C Peer involvement is essential to help individuals using AAC systems with their self-esteem and confidence.
WORKING 5 - Parental Perspectives Propagate Prospects
Do you assume the future unemployability of an individual based on physical and speech impairment? In the cartoon the baby is already commenting on mother’s lack of expectation of employment.
Whether we are aware of it or not we are all in the business of making or breaking barriers to employment from the time a child is born. (CARLSON F. 1994)
Parents and significant others involved with young children should look to the future. It is their attitudes, expectations and practices that have a positive or negative effect in shaping the child’s world as a adult.
This is true of academic goals:
The academic appetite started on the parents’ knee is often difficult to make available and the children start school with an additional created academic handicap. The barriers to information about the world around us needs to be broken down early (CARLSON F. 1994)
as well as vocational aspirations:
Instilling a positive work ethic must begin early in life with positive home and school expectations and appropriate feedback. (LIGHT J., STOLTZ B., & MCNAUGHTON D. 1993)
Present career options and promote discussions about what you would like to be when you grow up at an early age. (HANEY C. 1993)
Of course, this may involve some risk:
In order for the Americans with Disabilities Act to have successful application, a number of individuals/agencies will have to assume a hierarchy of risk. In the case of the congenitally disabled or young disabled person, parents, and/or significant others, must assume a risk of allowing the disabled individual to ‘do’ things on his/her own, with the subsequent possibility of experiencing failure. (LESLIE J. 1993)
but to remove all risk from a person’s life is to suffocate them with too much love and protection. Let no one be guilty of placing an individual’s future prospects at risk by negating the opportunities that AAC affords to people with significant speech impairment (See WORKING 4) while the individual progresses through childhood.
Whether we are aware of it or not we are all in the business of making or breaking barriers to employment from the time a child is born. (CARLSON F. 1994)
Parents and significant others involved with young children should look to the future. It is their attitudes, expectations and practices that have a positive or negative effect in shaping the child’s world as a adult.
This is true of academic goals:
The academic appetite started on the parents’ knee is often difficult to make available and the children start school with an additional created academic handicap. The barriers to information about the world around us needs to be broken down early (CARLSON F. 1994)
as well as vocational aspirations:
Instilling a positive work ethic must begin early in life with positive home and school expectations and appropriate feedback. (LIGHT J., STOLTZ B., & MCNAUGHTON D. 1993)
Present career options and promote discussions about what you would like to be when you grow up at an early age. (HANEY C. 1993)
Of course, this may involve some risk:
In order for the Americans with Disabilities Act to have successful application, a number of individuals/agencies will have to assume a hierarchy of risk. In the case of the congenitally disabled or young disabled person, parents, and/or significant others, must assume a risk of allowing the disabled individual to ‘do’ things on his/her own, with the subsequent possibility of experiencing failure. (LESLIE J. 1993)
but to remove all risk from a person’s life is to suffocate them with too much love and protection. Let no one be guilty of placing an individual’s future prospects at risk by negating the opportunities that AAC affords to people with significant speech impairment (See WORKING 4) while the individual progresses through childhood.
WORKING 6 - It's a chore but someone's got to do it
As children many of us learned about work and to work for others by mowing lawns, baby-sitting, or delivering papers. While none of these experiences are part of our adult resumes, they were our first jobs and part of the foundation upon which we learned what we liked to do, what we were good at doing, and what we could realistically do and get paid for doing. For Sara, she had none of these experiences. (VAN TATENHOVE G. 1993)
Work for pay opportunities (e.g. chores for allowance, paper route, bottle collection, etc.) should be provided at appropriate times in childhood (SWEENEY L. 1993)
As our interview was drawing to a close, Jacobson said that his parents kept preaching the work ethic to him and that they expected him to make it in the world of work. He laments that disabled children today have no responsibilities around the home. AThis is very important in nurturing the first feelings of the value of work.” (WILLIAMS M. 1994)
WORKING 4 asked the question, AIf it’s good for Peter then why not for Paul?” Differential and preferential treatment of disabled children does not prepare them for the real world of their future. One of the features of a child’s life is having to do chores, especially chores for which the child receives remuneration. It is through these chores that the work ethic is fostered. Further, it develops a sense of responsibility:
AMaking sure the rabbit is fed is my responsibility. I have to remind mother every day using my VOCA.”
A disabled child, denied these early experiences, may be unintentionally denied an early appreciation of the work ethic. It could be argued, a person with a severe disability is physically incapable of coping with the average chore. This would be erroneous as well as advocating a lifestyle which does not reinforce the relationship between work and remuneration. Even a person who is a single switch user should be given chores to do.
There need not be remuneration in every case (a child should be expected to keep a bedroom tidy without any reward other than praise for example) and the remuneration does not always have to be money: tokens; stars; house points; a pat on the back; a trip out; first in the dinner queue; etc. are all good alternatives.
The chores might include:
C the instruction of another in tidying the bedroom;
C the use of a single switch to operate an electric can opener to help with meal preparation;
C a requirement to memorise several items that are needed on a shopping trip. Failure to remember the items or to remind a parent or a carer could result in part of the child’s allowance being deducted;
C reminding members of the family to do things at certain times. There should be some consequence of forgetting - a financial penalty from the child’s allowance;
C showing visitors around school or college. Preprogrammed phrases could be used for the differing environments. This requires a voice output device;
C making a hot drink for visitors. Use a teasmaid with a single switch interface for example. This demonstrates that people with disabilities are not helpless or incapable;
C collection of monies from differing people or classrooms for regular events;
C passing messages between staff and other staff, staff and parents, parents and staff, etc;
C preparing a regular information poster (on a computer?) detailing school events for the week;
C presenting in assemblies, leading prayers, singing songs, etc.
The child’s handling of money as payment for chores helps him/her to understand that work and money are related. The child who is remunerated with money or other rewards learns early in life that some things are not easily acquired and begins to grasp the idea of the work ethic. Further, handling money may help to teach numeracy, the value of the coins and notes, the way that a savings account works, what interest is and so on. It is important that if Peter gets an allowance or pocket money so should Paul.
Work for pay opportunities (e.g. chores for allowance, paper route, bottle collection, etc.) should be provided at appropriate times in childhood (SWEENEY L. 1993)
As our interview was drawing to a close, Jacobson said that his parents kept preaching the work ethic to him and that they expected him to make it in the world of work. He laments that disabled children today have no responsibilities around the home. AThis is very important in nurturing the first feelings of the value of work.” (WILLIAMS M. 1994)
WORKING 4 asked the question, AIf it’s good for Peter then why not for Paul?” Differential and preferential treatment of disabled children does not prepare them for the real world of their future. One of the features of a child’s life is having to do chores, especially chores for which the child receives remuneration. It is through these chores that the work ethic is fostered. Further, it develops a sense of responsibility:
AMaking sure the rabbit is fed is my responsibility. I have to remind mother every day using my VOCA.”
A disabled child, denied these early experiences, may be unintentionally denied an early appreciation of the work ethic. It could be argued, a person with a severe disability is physically incapable of coping with the average chore. This would be erroneous as well as advocating a lifestyle which does not reinforce the relationship between work and remuneration. Even a person who is a single switch user should be given chores to do.
There need not be remuneration in every case (a child should be expected to keep a bedroom tidy without any reward other than praise for example) and the remuneration does not always have to be money: tokens; stars; house points; a pat on the back; a trip out; first in the dinner queue; etc. are all good alternatives.
The chores might include:
C the instruction of another in tidying the bedroom;
C the use of a single switch to operate an electric can opener to help with meal preparation;
C a requirement to memorise several items that are needed on a shopping trip. Failure to remember the items or to remind a parent or a carer could result in part of the child’s allowance being deducted;
C reminding members of the family to do things at certain times. There should be some consequence of forgetting - a financial penalty from the child’s allowance;
C showing visitors around school or college. Preprogrammed phrases could be used for the differing environments. This requires a voice output device;
C making a hot drink for visitors. Use a teasmaid with a single switch interface for example. This demonstrates that people with disabilities are not helpless or incapable;
C collection of monies from differing people or classrooms for regular events;
C passing messages between staff and other staff, staff and parents, parents and staff, etc;
C preparing a regular information poster (on a computer?) detailing school events for the week;
C presenting in assemblies, leading prayers, singing songs, etc.
The child’s handling of money as payment for chores helps him/her to understand that work and money are related. The child who is remunerated with money or other rewards learns early in life that some things are not easily acquired and begins to grasp the idea of the work ethic. Further, handling money may help to teach numeracy, the value of the coins and notes, the way that a savings account works, what interest is and so on. It is important that if Peter gets an allowance or pocket money so should Paul.
WORKING 7 - Let's make allowances for the speech impaired
It is important to begin to give children who are candidates for the working world a sense of money and its worth..... ..... One of my favourite questions to parents of children using augmentative communications systems is AWhen did you start giving him or her an allowance?” Regardless of age group, most of the time the answer has been AWe don’t give her or him an allowance.” Younger siblings were often reported to get allowances. (CARLSON F. 1994)
In the cartoon Shani’s very young baby brother is talking about spending his allowance on chocolate. However Shani doesn’t get an allowance. The point is clear. How can a child learn about money if she or he has never experienced it?
In the cartoon Shani’s very young baby brother is talking about spending his allowance on chocolate. However Shani doesn’t get an allowance. The point is clear. How can a child learn about money if she or he has never experienced it?
WORKING 8 - Involvement
In this cartoon Shani is using a vacuum which has been attached to her wheelchair. One of Shani’s switches latches the power to the vacuum cleaner for a minute or two. To switch it on once again Shani has to hit the switch once more. Further, she has responsibility; she is in control. Shani has to give directions to her helper by her speech synthesiser. The synthesiser could be specially set up to make access to the appropriate vocabulary easy.
The cartoon and the suggestion may seem a bit silly but the idea is important. No matter the level of a person’s physical disability, the person can and should be involved. Simple switching technology makes it possible for electrical items to be easily controlled. The task (chore) becomes the responsibility of the individual. The individual experiences control. The individual’s knowledge of the items used is increased. The initial letters of the words spell out the acronym TRICK:
TASK RESPONSIBILITY INVOLVEMENT CONTROL KNOWLEDGE
TRICK someone today
An essential ingredient should be the functional use of the AAC system. Appropriate vocabularies have to be devised for each task which are initially vocabulary-semantic learning sessions. Later, they serve to reinforce vocabularies. However, the tasks also reduce the likelihood of passivity and promote a positive work ethic.
The cartoon and the suggestion may seem a bit silly but the idea is important. No matter the level of a person’s physical disability, the person can and should be involved. Simple switching technology makes it possible for electrical items to be easily controlled. The task (chore) becomes the responsibility of the individual. The individual experiences control. The individual’s knowledge of the items used is increased. The initial letters of the words spell out the acronym TRICK:
TASK RESPONSIBILITY INVOLVEMENT CONTROL KNOWLEDGE
TRICK someone today
An essential ingredient should be the functional use of the AAC system. Appropriate vocabularies have to be devised for each task which are initially vocabulary-semantic learning sessions. Later, they serve to reinforce vocabularies. However, the tasks also reduce the likelihood of passivity and promote a positive work ethic.
WORKING 9 - Integration qualification
The word integration used here refers to the integration of augmented communicators into the world of work. There is one thing that is certain:
The primary integration qualification is communication.
Being able to communicate is vital if employment is a goal:
Communication is one of the most important things in the world especially when one is searching for a job. In my case, communication is going to be a bigger factor than it normally would for anyone else, because I’m in a wheelchair and I use a communication aid. A job is one of the most important things in life, and it’s difficult to find a job these days. Thus, finding a job will be even tougher. I have to prove two things to my potential co-workers and boss. I have to prove that I can communicate, and I have to prove I have the desire and determination to get my job done ...... (HOLLMAN D. 1993)
....my voice output communicator .... has been a great asset to me in seeking and achieving my employment. In the past, when I went on an interview, all they could see was a poor little fellow in a wheelchair looking retarded. They wouldn’t take time to let me spell out what I wanted to say on my letter board. They just said I was unemployable and turned their backs on me. (PRENTICE J. 1993)
Mobility and communication are essential prerequisites to meaningful exploration of vocational options (STUMP R. 1993)
Successful communication with co-workers and supervisors is key to any job, including communication focussed on work issues or communication of a more personal and social nature. (LIGHT J., STOLTZ B., & McNAUGHTON D. 1993)
Communication skills may be critical to finding, maintaining, and changing jobs. A lack of such skills may be a central factor contributing to the loss of one’s job. (CALCULATOR S. 1995 page 54)
However, even to be considered for those jobs, I had to be able to communicate one way or the other. Communication is the key to everything, and if people cannot communicate, nothing would be developed. Oh sure, there were times when I didn’t feel I needed an AAC device, but when I was alone in the real world, that’s when I realized a voice output device with a printer was needed if I was going to communicate with people who did not know me. As far as employment goes, we all need to be able to communicate to obtain the job we want and deserve. (KITCH R. 1995 page 7)
Learning the ability to communicate through AAC cannot be left to chance, to the odd session by a visiting speech professional, or to the period immediately before seeking employment - it has to be tackled from a very early age. It is of primary importance. Indeed, it ought to match stage by stage the language development of a child with no speech impairment.
For all children in need of augmentative communication, it is important that the teaching begins as early as possible. The most important argument for this is that there appears to be a sensitive period for language acquisition; i.e. it is easier for children of pre-school age to learn language than it is for older children and adults. The same also applies to augmentative communication (VON TETZCHNER S. & MARTINSEN H. 1992)
The primary integration qualification is communication.
Being able to communicate is vital if employment is a goal:
Communication is one of the most important things in the world especially when one is searching for a job. In my case, communication is going to be a bigger factor than it normally would for anyone else, because I’m in a wheelchair and I use a communication aid. A job is one of the most important things in life, and it’s difficult to find a job these days. Thus, finding a job will be even tougher. I have to prove two things to my potential co-workers and boss. I have to prove that I can communicate, and I have to prove I have the desire and determination to get my job done ...... (HOLLMAN D. 1993)
....my voice output communicator .... has been a great asset to me in seeking and achieving my employment. In the past, when I went on an interview, all they could see was a poor little fellow in a wheelchair looking retarded. They wouldn’t take time to let me spell out what I wanted to say on my letter board. They just said I was unemployable and turned their backs on me. (PRENTICE J. 1993)
Mobility and communication are essential prerequisites to meaningful exploration of vocational options (STUMP R. 1993)
Successful communication with co-workers and supervisors is key to any job, including communication focussed on work issues or communication of a more personal and social nature. (LIGHT J., STOLTZ B., & McNAUGHTON D. 1993)
Communication skills may be critical to finding, maintaining, and changing jobs. A lack of such skills may be a central factor contributing to the loss of one’s job. (CALCULATOR S. 1995 page 54)
However, even to be considered for those jobs, I had to be able to communicate one way or the other. Communication is the key to everything, and if people cannot communicate, nothing would be developed. Oh sure, there were times when I didn’t feel I needed an AAC device, but when I was alone in the real world, that’s when I realized a voice output device with a printer was needed if I was going to communicate with people who did not know me. As far as employment goes, we all need to be able to communicate to obtain the job we want and deserve. (KITCH R. 1995 page 7)
Learning the ability to communicate through AAC cannot be left to chance, to the odd session by a visiting speech professional, or to the period immediately before seeking employment - it has to be tackled from a very early age. It is of primary importance. Indeed, it ought to match stage by stage the language development of a child with no speech impairment.
For all children in need of augmentative communication, it is important that the teaching begins as early as possible. The most important argument for this is that there appears to be a sensitive period for language acquisition; i.e. it is easier for children of pre-school age to learn language than it is for older children and adults. The same also applies to augmentative communication (VON TETZCHNER S. & MARTINSEN H. 1992)
WORKING 10 - W-O-R-K
Can you think of a four letter word that is offensive to some people? That’s right it is work!
I have long been of the opinion that if work were such a splendid thing the rich would have kept more of it for themselves. (BRUCE GROCOTT, British Labour politician. Quoted in: Observer, London, 22 May 1988)
Name your grimmest spectre, it will be a metaphor for what we are talking about in this issue: employment for people who use augmentative and alternative communication. (WILLIAMS M. 1994)
The letters of work have been used in the title as a mnemonic for Words, Optimism, Realism, and Knowledge.
The first of the four, words means that to achieve open employment, the augmented communicator has to be able to communicate effectively (see WORKING 9). This can only be achieved through access to a vocabulary of words. While phrases may be prepared for use on the job itself, it is almost impossible to predict the nuances of every question that might occur at an interview and create the appropriate phrasal response. Nor can the questions that may crop up be foreseen. Stereotypical responses or an inability to respond at all, may lead to a devaluation of an individual’s potential by colleagues and management alike.
The second letter stands for optimism. It is important people do not have stereotypical images of what a person with a disability may achieve in employment. While it is unlikely that a person who is severely physically impaired and mad about trucks will become a lorry driver, it is impossible to know what future technologies may be able to help a person with a disability to achieve. There may be other related jobs in transport. A visit to a trucking company may help the individual to focus on some aspect of the world of trucking that is an option for employment:
Creative discussion should be fostered to stimulate the child’s discovery of how he/she can be prepared for a career interest even though they have a disability that would physically prevent the child doing the job; i.e., Beth Ann, has cerebral palsy, uses augmentative communication and is in a wheelchair. She loves dance and would love to be a ballerina. What are some of the discussions or experiences that could result for Beth Ann? A visit back stage to see all the things that are involved with dance would be a great learning experience for any child. During that time, discussions could result about the costume designs, lighting done by computers, staging layout and design. With today’s technology, it would be interesting to see what ideas Beth Ann could think of relating to what she could do with technology for a career in the field of dance. (HANEY C. 1993)
Individuals themselves may have low expectations of their ability:
Job aptitudes and interests were developed by first having Sara list her job interests without critiquing her ability to complete the job ..... Sara needed to be encouraged to think beyond stereotypes of job options for disabled people. (VAN TATENHOVE G. 1993)
Third, optimism must be tempered with realism. One can be both optimistic and realistic at the same time. The realistic job options for Shani do not include becoming a prima ballerina. However, who is say that a person in a wheelchair could not be part of a modern dance company? The criteria here would surely be good control of the wheelchair. There are theatre companies that work with people with disabilities and, more importantly, there are theatre companies that are run by people with disabilities. There are a growing number of well known ‘disabled’ actors. I know of at least one dance company that has dancers who have disabilities (Candoco) (Notice how the word ‘disabled’ seems inappropriate in the previous few sentences). Thus realism, in Shani’s case, may rule out the traditional prima ballerina option but doesn’t entirely rule out the world of dance or the world of theatre. It may be that the initial focus for Shani is not on dance as a career option but as a leisure pursuit. Shani is able to experience for herself what would be involved in becoming a dancer and temper her dream of being a prima ballerina with her experiences to date.
Finally, K stands for knowledge. Be aware of allowances, training, options, legislature, and anything else that exists to help a person achieve employment. The ‘Access to work scheme’ for example allows for the provision of necessary equipment (among other things) for a person achieving employment. Employers need to know that there are grants and allowances available to help with conversions, access schemes, and with specialised equipment. Employers also need to know the potential of an individual with disability and be educated away from the stereotypical image that falsely relates inability and disability. Users need to know what any particular occupation involves and how they might best develop the skills needed to have a realistic chance of employment in that area.
The final letter in this section (K is for Knowledge) leads us into the final part of the ‘working’ chapter. Should society Legislate or Educate for potential employment .......
I have long been of the opinion that if work were such a splendid thing the rich would have kept more of it for themselves. (BRUCE GROCOTT, British Labour politician. Quoted in: Observer, London, 22 May 1988)
Name your grimmest spectre, it will be a metaphor for what we are talking about in this issue: employment for people who use augmentative and alternative communication. (WILLIAMS M. 1994)
The letters of work have been used in the title as a mnemonic for Words, Optimism, Realism, and Knowledge.
The first of the four, words means that to achieve open employment, the augmented communicator has to be able to communicate effectively (see WORKING 9). This can only be achieved through access to a vocabulary of words. While phrases may be prepared for use on the job itself, it is almost impossible to predict the nuances of every question that might occur at an interview and create the appropriate phrasal response. Nor can the questions that may crop up be foreseen. Stereotypical responses or an inability to respond at all, may lead to a devaluation of an individual’s potential by colleagues and management alike.
The second letter stands for optimism. It is important people do not have stereotypical images of what a person with a disability may achieve in employment. While it is unlikely that a person who is severely physically impaired and mad about trucks will become a lorry driver, it is impossible to know what future technologies may be able to help a person with a disability to achieve. There may be other related jobs in transport. A visit to a trucking company may help the individual to focus on some aspect of the world of trucking that is an option for employment:
Creative discussion should be fostered to stimulate the child’s discovery of how he/she can be prepared for a career interest even though they have a disability that would physically prevent the child doing the job; i.e., Beth Ann, has cerebral palsy, uses augmentative communication and is in a wheelchair. She loves dance and would love to be a ballerina. What are some of the discussions or experiences that could result for Beth Ann? A visit back stage to see all the things that are involved with dance would be a great learning experience for any child. During that time, discussions could result about the costume designs, lighting done by computers, staging layout and design. With today’s technology, it would be interesting to see what ideas Beth Ann could think of relating to what she could do with technology for a career in the field of dance. (HANEY C. 1993)
Individuals themselves may have low expectations of their ability:
Job aptitudes and interests were developed by first having Sara list her job interests without critiquing her ability to complete the job ..... Sara needed to be encouraged to think beyond stereotypes of job options for disabled people. (VAN TATENHOVE G. 1993)
Third, optimism must be tempered with realism. One can be both optimistic and realistic at the same time. The realistic job options for Shani do not include becoming a prima ballerina. However, who is say that a person in a wheelchair could not be part of a modern dance company? The criteria here would surely be good control of the wheelchair. There are theatre companies that work with people with disabilities and, more importantly, there are theatre companies that are run by people with disabilities. There are a growing number of well known ‘disabled’ actors. I know of at least one dance company that has dancers who have disabilities (Candoco) (Notice how the word ‘disabled’ seems inappropriate in the previous few sentences). Thus realism, in Shani’s case, may rule out the traditional prima ballerina option but doesn’t entirely rule out the world of dance or the world of theatre. It may be that the initial focus for Shani is not on dance as a career option but as a leisure pursuit. Shani is able to experience for herself what would be involved in becoming a dancer and temper her dream of being a prima ballerina with her experiences to date.
Finally, K stands for knowledge. Be aware of allowances, training, options, legislature, and anything else that exists to help a person achieve employment. The ‘Access to work scheme’ for example allows for the provision of necessary equipment (among other things) for a person achieving employment. Employers need to know that there are grants and allowances available to help with conversions, access schemes, and with specialised equipment. Employers also need to know the potential of an individual with disability and be educated away from the stereotypical image that falsely relates inability and disability. Users need to know what any particular occupation involves and how they might best develop the skills needed to have a realistic chance of employment in that area.
The final letter in this section (K is for Knowledge) leads us into the final part of the ‘working’ chapter. Should society Legislate or Educate for potential employment .......
WORKING 11 - Legislate or educate?
The myths that surround people with disabilities hinders their chances for employment, including ideas that people who are disabled are unable to hold a job and if they do, they are less productive, absent more often, have higher turnover rates, create safety risks, raise insurance rates, would not be accepted by their co-workers, or it would be too costly to hire them.
(MILLER A. L. 1994)
Employers believe that disabled employees incur extra costs, typically citing anxieties about illness, poor attendance and productivity. Yet several studies show that disabled workers have an attendance and productivity rate which is as good as, or better than, that of their colleagues. (ABILITY 1996 page 9)
The unemployment rate amongst disabled people is at least Atwice that for the working population as a whole” (WALKER A. 1982, COMMISSION OF THE EUROPEAN COMMUNITIES 1988, FRESHWATER K. & LEYDEN G. 1989, WORMAN D. 1989, YOUTHAID 1992). Further, employers are six times more likely to turn down a person with a disability for an interview even if their qualifications and experience are identical to those of a non-disabled applicant (SMITH S. 1992).
Should we legislate or educate? Should we do both? If potential employers were more aware of the capabilities of people with disabilities then perhaps legislation would not be necessary. A report by the Institute of Manpower Studies (HONEY S., MEAGER N., & WILLIAMS M. 1993) showed that 75% of those employers who had employed people with a disability had experienced no problems. However, the same report also showed that employers had a more positive attitude towards keeping on a person who had become disabled during his or her working life than employing people with a disability who were not known to them anew.
CASE STUDY: The chairperson of a company that markets electronic aids for the disabled was asked to give a presentation on AChanging the law to enforce the employment of people with disabilities”. He refused to give a presentation with such a title. He said he would gladly give a paper on the reasons why employers should be keen to employ a person with a disability. He believes that education is better than legislation.
The personnel officer in the cartoon has a stereotypical image of an augmented communicator. Perhaps he should be removed from that position if he holds such a view. People in authority do hold negative views for example, Michael Williams, editor of ‘Alternatively Speaking’ and an AAC user, writes of the negativity he experienced in his first job interview (WILLIAMS M. 1993). While, it is doubtful whether legislation alone would make a substantial difference, a person with a disability will at least get as far as the job interview. If the people conducting the interview hold stereotypical views the prospect of achieving employment is poor. Education and awareness are essential factors. However, even assuming an open-minded educated interviewer, the possibility of open employment for a person without the ability to communicate effectively is limited.
As the potential for a fulfilling adult life is, in some part, dependent upon the ability to communicate effectively, should the teaching of such skills be marginalised, neglected, or left to adulthood? This is far too important an area of concern for such disregard. It is vital that augmented communication be given the recognition it deserves and that it takes priority in the Individual Education Plans of those children identified as having special needs.
This paper concludes by considering a possible set of indicators of adult status. In doing so, the paradox of advocating employment within a context of reduced employability for those marginalised by virtue of their handicaps is raised (WARD K., THOMSON G., & RIDDELL S. 1994)
(MILLER A. L. 1994)
Employers believe that disabled employees incur extra costs, typically citing anxieties about illness, poor attendance and productivity. Yet several studies show that disabled workers have an attendance and productivity rate which is as good as, or better than, that of their colleagues. (ABILITY 1996 page 9)
The unemployment rate amongst disabled people is at least Atwice that for the working population as a whole” (WALKER A. 1982, COMMISSION OF THE EUROPEAN COMMUNITIES 1988, FRESHWATER K. & LEYDEN G. 1989, WORMAN D. 1989, YOUTHAID 1992). Further, employers are six times more likely to turn down a person with a disability for an interview even if their qualifications and experience are identical to those of a non-disabled applicant (SMITH S. 1992).
Should we legislate or educate? Should we do both? If potential employers were more aware of the capabilities of people with disabilities then perhaps legislation would not be necessary. A report by the Institute of Manpower Studies (HONEY S., MEAGER N., & WILLIAMS M. 1993) showed that 75% of those employers who had employed people with a disability had experienced no problems. However, the same report also showed that employers had a more positive attitude towards keeping on a person who had become disabled during his or her working life than employing people with a disability who were not known to them anew.
CASE STUDY: The chairperson of a company that markets electronic aids for the disabled was asked to give a presentation on AChanging the law to enforce the employment of people with disabilities”. He refused to give a presentation with such a title. He said he would gladly give a paper on the reasons why employers should be keen to employ a person with a disability. He believes that education is better than legislation.
The personnel officer in the cartoon has a stereotypical image of an augmented communicator. Perhaps he should be removed from that position if he holds such a view. People in authority do hold negative views for example, Michael Williams, editor of ‘Alternatively Speaking’ and an AAC user, writes of the negativity he experienced in his first job interview (WILLIAMS M. 1993). While, it is doubtful whether legislation alone would make a substantial difference, a person with a disability will at least get as far as the job interview. If the people conducting the interview hold stereotypical views the prospect of achieving employment is poor. Education and awareness are essential factors. However, even assuming an open-minded educated interviewer, the possibility of open employment for a person without the ability to communicate effectively is limited.
As the potential for a fulfilling adult life is, in some part, dependent upon the ability to communicate effectively, should the teaching of such skills be marginalised, neglected, or left to adulthood? This is far too important an area of concern for such disregard. It is vital that augmented communication be given the recognition it deserves and that it takes priority in the Individual Education Plans of those children identified as having special needs.
This paper concludes by considering a possible set of indicators of adult status. In doing so, the paradox of advocating employment within a context of reduced employability for those marginalised by virtue of their handicaps is raised (WARD K., THOMSON G., & RIDDELL S. 1994)
In Conclusion
I hope these notes which accompany each of the cartoon overheads have been useful . I don’t pretend these are the best ideas or are a necessary or an absolutely correct approach. They represent the ideas of my colleagues and myself on implementing AAC at this moment. In time, I will have new ideas and may have some altered opinions. I may change direction when presented with counter-argument and new research evidence. I would welcome your views on any of the topics. If you feel I’ve missed anything, have ideas for new cartoons or would like to point out a new direction for development please contact me.
You are free to use the cartoons or overheads within your establishment. You may find some of them useful to illustrate other points you wish to make on training days. I am more than happy for you to use the cartoons creatively. Indeed, you may wish to use them to negate the point I was trying to make.
There are no easy answers to many of the issues raised. If there were such answers these cartoons would have not been necessary. I hope that they help you to help others to see that AAC is not only an important but an essential part of the curriculum which holds the key to development of the potential of an individual.
Good Luck!
Tony Jones
You are free to use the cartoons or overheads within your establishment. You may find some of them useful to illustrate other points you wish to make on training days. I am more than happy for you to use the cartoons creatively. Indeed, you may wish to use them to negate the point I was trying to make.
There are no easy answers to many of the issues raised. If there were such answers these cartoons would have not been necessary. I hope that they help you to help others to see that AAC is not only an important but an essential part of the curriculum which holds the key to development of the potential of an individual.
Good Luck!
Tony Jones