Review of Specialist Disability Employment Programmes: A Call for Evidence Response from Sense Sense welcomes the opportunity to respond to the call for evidence issued as part of the review of specialist disability employment services. For those deafblind people who are able to work, employment support is vital. Therefore, this review addresses very important issues. About Sense Sense is the leading national charity that supports and campaigns for children and adults who are deafblind. We provide expert advice and information as well as specialist services to deafblind people, their families, carers and the professionals who work with them. In addition, we support people who have sensory impairments with additional disabilities. About deafblindness Deafblindness is a combination of both sight and hearing difficulties. Most of what we learn about the world comes through our ears and eyes, so deafblind people face major problems with communication, accessing information and mobility. The barriers faced by deafblind people are different to, and greater than, those experienced by people with a single sensory impairment. People with a single sensory impairment are able, to some extent, to compensate by using their remaining intact sense. Deafblind people are not able to do this. The interaction of sight and hearing difficulties results in unique deficiencies in the information available to deafblind people about the world around them. Deafblind people are often unable to benefit from services, equipment and systems designed for people with a single sensory impairment. The needs of deafblind people are complex and unique and their support needs are high. For more detail on the needs of deafblind people in work, see page 3. There are many causes of deafblindness. These include premature birth, birth trauma and rubella during pregnancy, which can cause babies to be born deafblind. Some genetic conditions also result in deafblindness. Any of us can become deafblind at any time through illness, accident or as we grow older. People who are born deafblind often have additional disabilities, including learning and physical disabilities. About Sense’s Response In preparing this response, Sense asked deafblind members about their experiences of disability employment services. We have also drawn on previous consultations we have done with deafblind members, disabled staff and their managers on this subject. Throughout this response, we have included a number of case studies that are drawn directly from the information provided by these people. Strategic direction Question: “The critical question is strategically what is the direction of development that would best support disabled people's employment opportunities (including how the generalist programmes like Work Programme serve disabled people)?” To best support disabled people’s employment opportunities, employment programmes need to: * include a range of general and specialist provision * be highly personalised in both their objectives and how they are delivered * be flexible and able to respond to an individual’s changing circumstances * support people to develop skills and to gain qualifications, experience and confidence. There are, however, some deafblind people for whom meaningful, sustained, paid employment will never be a realistic goal. It is important that, whilst everyone is given a fair chance, nobody who is unable to work is forced into undertaking work-related activity that will inevitably lead to failure. It must be recognised that for some people employment services are the wrong kind of support. Measures of success Question: “Is the employment rate for disabled people the best measure of success? Are there any other measures you think are important?” Include impairment specific monitoring It is important that programmes are monitored both for their overall success and for their success in working with specific groups, such as deafblind people. Impairment specific monitoring is the best way to ensure that providers provide high quality and appropriate support to people with the full range of needs, including those with the most complex needs. Without this impairment specific monitoring, providers will focus upon those with the simplest needs who are relatively easy to get into work, at the expense of those with more complex needs. Measure progress towards employment not just employment rates Although meaningful paid employment should be the eventual goal of employment services, it must be recognised that each disabled person will move towards this goal at different speeds and in different ways. For some, especially those with complex needs, the process of becoming ready for work and of obtaining work may be long and slow and involve many stages, each with its own intermediate goal. For some people, one such intermediate goal may be to undertake a period of mainstream work-related study or training, at which point they may temporarily or permanently cease to be engaged with employment programmes, but such a step should be considered to be positive. These intermediate goals should be taken into account, alongside the final goal of meaningful paid employment, when measuring success. One way to enable personalised intermediate goals to be taken into account when measuring success would be for providers and each disabled person to agree an action plan at the start of a programme. This action plan would need to set out the goals that the person hopes to attain and how they will progress towards these. This action plan may include many steps, such as the development of new skills, attainment of qualifications, gaining experience and developing job search strategies, before paid employment is feasible. Success can then be measured against this action plan and could consider: * the development of the mutually agreed action plan * initial progress against the action plan * sustained progress and * attainment of final goals. Measure satisfaction It is also important that feedback is obtained from service users about their experience of using the service, whether they felt it had benefits in any aspect of their life and whether the service met their needs. Raising aspirations and increasing opportunities Question: “How can we raise aspirations, and increase opportunities for career development and progression?” Raising aspirations and improving opportunities for career development and progression needs to be tackled on four fronts. 1. Disabled people Disabled people’s expectations and confidence need to be increased. Disabled people, especially deafblind people, will have experienced discrimination, been at the receiving end of negative attitudes from other people, and may have had fewer opportunities to develop qualifications, skills and experience for the workplace. They may see other people, including sometimes those with fewer qualifications or skills, getting jobs or being promoted, whilst they are overlooked. They may be unaware of the support that is available and/or doubt that the support would meet their particular needs. These factors all combine to lead to low expectations and loss of confidence. How these can be addressed will depend on each individual and could include: * support to gain relevant and useful qualifications, skills and experience * support to challenge discrimination and prejudice * information about the support that is available, including being able to apply for and be assured of support from Access to Work prior to having a firm job offer * providing mentoring from disabled people with similar impairments who have progressed their career * supporting disabled people in work to attend training and other activities that would help them to progress their careers * tackling the other causes of low aspirations and restricted career development and progression as set out below. Fund support for learning and development opportunities Currently, disabled people who are in work can receive support from Access to Work to enable them to do their current job. However, Access to Work will not pay for support for development opportunities. For example, deafblind people who need interpreters in order to be able to attend training that would help them to progress their career cannot use Access to Work funding to pay these interpreters. Support people with deteriorating conditions who are in work before they go off sick or lose their job For disabled people with deteriorating conditions who are in work, there is currently little or no support to enable them to develop new skills that would enable them to remain in their current job or find a new job when their condition deteriorates. Providing support to these people at an early stage, before they go off sick, or as soon as they go off sick, could help avoid them leaving work and subsequently being unemployed and losing confidence and experiencing lower aspirations and reduced career prospects. Such support could also enable them to develop new skills that might enable them to move to a new job that is more suited to their worsening condition before having to leave their old job. Case study When L.B. began working for her current employer she was deafblind. Over a period of several years she developed other impairments and health problems which have made it increasingly difficult for her to do her job. For considerable time she has felt that to continue in her current job she needs help to find and learn to use better methods of communication but no help is available. For some time she has felt that her current area of work is no longer suitable but that she lacks the knowledge and skills to be able to move into an alternative area of work. She has asked for help to develop skills that would enable her to move into a more suitable area of work but has been told that no help is available whilst she is still in work. 2. Providers of employment services Providers of disability employment support services need to be able to support the full range of disabled people, irrespective of their past education, employment and life circumstances. Providers must be equipped to support people into all kinds of employment depending on their individual abilities and interests, and should not focus upon low-skilled, low-paid jobs. Furthermore, providers should be able to identify those disabled people who already have, or who have the potential to gain, high-level qualifications and skills and should be able to support them to progress to their full potential. Case study D.G. has a doctorate in engineering and had a successful career before becoming deafblind. After losing his vision and hearing, he asked for help to find an alternative, more accessible, career. Despite his academic and employment record, the employment service provider tried to push him into a job stacking shelves in a supermarket. D.G. subsequently discontinued seeking assistance with changing career and eventually found himself an academic research job. 3. Government and funding In order for providers to be able to deliver high expectations and to support people to reach their full potential, government must recognise the full range of needs, including the need to support people not just into the first available low-skilled, low-paid job, but to develop new skills and to gain qualifications and experience to improve their future workplace potential. This could include, for example, providing support, similar to that provided by Access to Work, to enable people to gain experience through volunteering. Access to Work funding should also be available to people in work that need support to undertake development opportunities. 4. Employers Employers need to be encouraged to treat disabled job applicants and employees fairly in recruitment, work and development. Despite legislation, such as the Disability Discrimination Act and the Equality Act, disabled people do still face significant levels of discrimination when applying for jobs and in the workplace. Enforcing their rights under the Disability Discrimination Act and Equality Act has proven difficult. More support should be made available to enable disabled people to use this legislation. Until this discrimination is tackled, the career opportunities of deafblind people will be restricted. Action by, and support for, employers Question: “What can employers do to enable more disabled people to get, and keep, employment? And what support do employers need?” Tackle discrimination One of the biggest barriers faced by deafblind people who are able to work is discrimination by potential or current employers. Employers, therefore, have an important role to play by ceasing to discriminate. Employers need to audit their recruitment, development and retention policies, as well as building accessibility and staff awareness and make changes to ensure that disabled applicants and employees are not disadvantaged. Provide clear and practical guidance to managers Employers can only establish an accessible working environment if they have appropriate support and guidance. Managers need clear and easy to use, but thorough, tools for conducting audits, and guidance on how to make changes. They also need both financial and practical assistance in assessing, and practical information on how to meet the needs of disabled employees. Practical information and guidance on meeting the needs of disabled employees is needed by managers at all stages but most importantly when a new disabled employee begins work, or when an existing employee acquires an impairment or health issue, or an existing impairment or health condition deteriorates. For example, employers with deaf staff need clear guidance on how to work with interpreters. Minimise the impact of Access to Work on employers Access to Work creates additional burdens for employers and these need to be minimised. Case study S.B. is the manager of a deafblind member of staff. She received a call from Access to Work querying a claim, stating that it was above the hourly rate for interpreters and that they could find interpreters more cheaply. The claim was well within the maximum level agreed by Access to Work and the caller did not understand the difference between BSL interpreters and specialist deafblind interpreters. S.B. spent 20 minutes on the telephone discussing this with the caller before he agreed to pay the claim. A later claim form was rejected because the deafblind person's signature was outside the box. Again, S.B. had to spend time on the telephone explaining that the person could not see the box in order for the claim to be paid. Improving the effectiveness of government programmes Question: “What would make the set of Government programmes (from the general Work Programme to more specialist programmes) as effective as possible?” In particular, do you have ideas to enable the programmes to: “be highly personalised? “work well for people with all types of disability/health conditions? “work well with and for employers?” Only two of the deafblind people who responded to our consultation had experience of disability employment programmes other than Access to Work. Of these two, both had found the service provider to have little understanding of deafblindness and to have low expectations of the kind of work that they could do. Many more respondents had experience of Access to Work and, therefore, our comments below are focussed upon Access to Work. Before considering how Access to Work could be improved for deafblind people, the needs of deafblind people who are in work need to be understood. The needs of deafblind people in work In order to be able to work, deafblind people need support with a range of tasks relating to mobility, communication and access to information. Their needs are different to those of people with a single sensory impairment. The support deafblind people need may include a combination of assistive technology, specialist support workers and adjustments made by employers. Deafblindness affects each individual differently and what works for one deafblind person may not necessarily work for another. Assistive technology needed by deafblind people may include: * screen reader software * screen magnification software * braille displays * braille notetakers * scanners with optical character recognition software * textphones with large print displays * braille textphone software. Specialist support workers needed by deafblind people may include: * British sign language (BSL) interpreters who can adapt their signing for people with a visual impairment * hands-on sign interpreters * deafblind manual interpreters * speech-to-text reporters * electronic notetakers * support workers, with specialist communication skills, to assist with: * accessing paperwork * communication with colleagues, customers/service users, transport staff and others * guiding and communication support whilst travelling * guiding around unfamiliar locations such as meeting venues. Employers need to make a wide range of adjustments including: * adapting the speed, length and format of meetings to make them accessible * training colleagues in deafblind awareness * ensuring IT and other equipment is compatible with any assistive technology being used * adapting the working environment by, for example, increasing levels of light or removing obstacles * making information available in accessible formats such as large print, Braille or electronic formats * adapting job roles and ways of working to be accessible. For deafblind people who are in work, support provided by Access to Work is extremely important. However, there are a number of problems that people have told us about with Access to Work that need to be addressed. Build upon the flexibility for individual support packages The needs of deafblind people are diverse – what works for one does not necessarily work for another. It is, therefore, important that Access to Work retains and builds upon the current flexibility to agree to individualised support packages. Specialist assessments by people with knowledge of deafblindness Deafblind people’s support needs are complex and unique. Therefore, assessments should be carried out by people with specialist understanding of deafblindness. This would help to ensure that the support recommended is both effective and efficient. However, currently deafblind people are often assessed by people with little or no understanding of deafblindness. Case study A.R. is totally blind and has a severe hearing loss. She cannot read print, cannot use a standard telephone, cannot communicate with strangers, cannot hear public announcements and cannot hear traffic. Her Access to Work assessor could not understand why she had greater difficulty with travelling, and therefore needed more support, than a hearing-blind person would. The assessor understood the needs of blind people and wrongly assumed that the needs of a deafblind person were the same. The assessor also recommended that she had additional support worker hours for using the telephone, instead of recommending the use of braille textphone software, which would have been cheaper and met needs better. The assessor was unaware that braille textphone software exists. I.e. the assessor was not familiar with the equipment that is available for deafblind people. Had the assessor had specialist knowledge of deafblindness both of these problems would have been avoided. These problems were initially reported to us over three years ago and, as of one month ago, were still unresolved. Case study L.B. is profoundly deaf and totally blind. She communicates using the deafblind manual alphabet or braille. Her Access to Work assessors did not understand the difference between deafblind manual and British Sign Language, even though these are two totally different communication systems. Additionally, the assessors were unaware of the difference between verbatim speech-to-text reporting and electronic notetaking and that only electronic notetaking can (currently) be used with braille. The skill set required by support workers using deafblind manual, British sign language, speech-to-text reporting and electronic notetaking are completely different. The assessor understood the communication options available to deaf people but not those for deafblind people. This problem initially emerged nearly seven years ago, when L.B. began work, were repeated when L.B.’s support was reviewed four years ago and repeated again at a further review one year ago. It is, therefore, essential that assessors understand the differences and make the appropriate recommendations, otherwise support will be useless. Support should maximise the disabled person’s ability to do his/her job The support provided to disabled people should optimise their ability to do their job. Some of our deafblind members have experienced inadequacies in the support provided and, consequently, have been unable to carry out the duties of their job. Case study L.J. is totally blind, has a severe hearing loss and no use of one hand. She required a support worker to assist with accessing printed documents, communication with colleagues and travel. She also required assistive technology including a screen reader, braille display and speech recognition software. Access to Work refused to provide the speech recognition software, arguing that she could dictate to her support worker. However, this meant that she was unable to use a computer, and therefore unable to do her job, whenever her support worker was unavailable. Having speech recognition software would have improved her ability to fulfil the duties of her job, even in the absence of her support worker. The support provided enabled her to work only in some situations – in the presence of her support worker – and not in all situations. Ensure decision-making and support is timely It is Sense’s experience that Access to Work processes can be too slow. Problems caused to disabled people and their employers could be reduced if job-seekers could have an assessment prior to a job offer that determines a basic level of support required for any job. The current letter that can be downloaded to tell employers about Access to Work is insufficient, individual agreements need to be set up. This support could then begin immediately on finding work and the assessment be revised, if necessary, to meet the needs associated with the specific job. Similarly, if people transferring to new jobs could take their existing Access to Work support with them to the new job, thus having support in place immediately. The package of support could then be re-assessed and adjusted to meet the demands of the specific job. Case study A deafblind person waited approximately four months from the time of the assessment to receiving a decision about the support that Access to Work would provide. This was, largely, due to a long delay between assessment and the assessor writing and submitting the report. Jobcentre Plus should ensure that this kind of delay is minimised and that assessors are penalised for such delays. A delay of a similar length occurred when this same deafblind person had her support reviewed. Decisions about one-off support have also suffered from unacceptable delays. Case study S.B. is Deaf and visually impaired. Her employer required her to attend a conference abroad (in a country where the conference organisers had no duty to provide interpreters). She applied to Access to Work for funding for interpreters. However, it took so long for a decision to be made that, by the time it had been made, it was too late to book a place at the conference. Consequently, she had to miss out and fail to fulfil the requirements of her job. Recognise and value the specialist skills of support workers working with deafblind people A common concern amongst our deafblind members is that of recruiting and retaining suitably skilled support workers. Deafblind people require support workers with specialist skills in communication, guiding and other areas. Deafblind people often experience difficulty in recruiting and retaining support workers with the appropriate skills. Sense believes that Access to Work should assist with this in the following two ways: 1. An hourly rate for support workers that reflects their skills Firstly, it must be recognised that deafblind people require support workers with specialist skills and that to recruit and retain suitable people the hourly rate paid to them must reflect their skill level. Many of our deafblind members, and their support workers, feel that the hourly rates allocated are insufficient. Case study L.S. is a support worker to a person who is Deaf and visually impaired. She provides support with accessing printed information and provides visual-frame sign language communication support. However, she is paid the same hourly rate as a colleague who provides assistance only with accessing printed information. I.e. the specialist skills she has in visual-frame signing are not being rewarded. Consequently, it is difficult to recruit suitably skilled support workers, turnover of support workers is high, and deafblind people can be left without support at frequent and for sometimes lengthy periods. Case study A.D. is totally deafblind. She communicates using an adapted form of hands-on signing. She was told that Access to Work would only pay £10 per hour for her support workers. Support workers who can use Hands-on signing cost significantly more than this per hour and, consequently, she was unable to get the support workers she needed and subsequently had to close her business. 2. Fund support worker training Secondly, in recognition of the shortage of suitably skilled support workers for deafblind people, Access to Work should assist with the costs of training support workers. This could, for example, include paying for support workers to attend courses on communication support work, electronic notetaking, guiding or interpreting. Case study S.B. is Deaf and visually impaired. She required a support worker to assist with accessing information, sign language communication support with colleagues, notetaking in meetings and guiding. She was unable to find a support worker with all of the necessary skills, so asked Access to Work to pay for a support worker to attend a notetaking course. Access to Work refused, arguing that it was the employer’s responsibility to provide training. Ensure interpreters of all kinds can have co-workers for assignments over 2 hours Interpreting is an intensive and demanding role. Interpreters should only work alone for assignments under two hours. For assignments over two hours, they should have a co-worker. Interpreters cannot work continuously for more than 2 hours without the quality of their work deteriorating significantly. Therefore, it is essential that interpreters of all kind work in pairs for assignments with a duration longer than 2 hours, so that they can swap over at regular intervals. This is especially important when the interpreters are working with deafblind people, as even during breaks deafblind people require continued support. It is Sense’s understanding that current Access to Work guidelines say that interpreters should have co-workers for assignments longer than three hours. This should be reduced to two hours to ensure quality of support is not jeopardised. Improve the knowledge of Access to Work staff A number of our members told us of difficulties they had experienced with being told conflicting information by different Access to Work staff, which led to confusion. It is important that correct and consistent information is provided. Case study J.L. is blind. To take notes in meetings, he uses a Braille notetaker (PDA). His notetaker needed repairing and he approached Access to Work to ask if they would cover the cost of repair. He was told three different things – that Access to Work never pay for repairs, that Access to Work only pay for repairs over £2,000 and that Access to Work will pay for repairs. Value people more than saving money Providing support for deafblind people can be expensive. Whilst we agree that taxpayers’ money must be spent appropriately, when Jobcentre Plus staff are asked to scrutinise expenditure and save money, it results in individuals making bizarre and unacceptable statements and decisions. A number of our deafblind members told us that Jobcentre Plus staff had told them that Access to Work would not pay more for their support than they would receive if on benefits. However, others receive significantly higher amounts of support. Therefore, we assume that this is not policy but individual Jobcentre Plus staff making such statements and decisions in an attempt to save money. Other examples of individual Jobcentre Plus staff making unacceptable statements and decisions in order to save money were also given. Case study L.B. is totally blind and profoundly deaf. She communicates using deafblind manual or braille. She successfully negotiated a higher rate of pay for her interpreters, in recognition that the interpreters needed specialist skills and that there were a very small number of suitably skilled interpreters in the country. However, her employer was then told that one of the interpreters, who was dual qualified in deafblind manual and electronic notetaking, was too expensive, even though her fee was lower than the maximum hourly rate that had been agreed. I.e. an individual member of Jobcentre Plus staff had decided that a dual-qualified interpreter was too expensive, without referring to the agreement or understanding that the specialist support required by deafblind people comes at a high price. This is unacceptable. It must be recognised that it can be expensive to provide support for people with complex needs within employment and that this expense is worthwhile for the valuable contributions each individual makes to the workforce. Provide accessible paperwork Another common concern amongst our deafblind members is accessibility of the Access to Work paperwork. Many deafblind people are unable to read and fill-in printed forms. Only a small proportion of our deafblind members who responded to our questions, had received letters from Access to Work in appropriate, accessible formats and none had received claim forms in any format other than print. Case study N.A. is deaf and visually impaired and is only able to read very large print. He receives a few hours per week of sign language interpreter support but Access to Work have refused to provide either claim forms in large print or a support worker to assist him to complete the forms. Consequently, he has to save up claim forms to complete twice a year when he visits his parents. Access to Work staff frequently complain that he does not send claim forms frequently enough but he has no option. Providing paperwork in accessible formats, including accessible ways of responding, would greatly assist many deafblind people. Making these changes would improve the effectiveness and efficiency of support provided through Access to Work and enable more deafblind people to enter, remain in and progress within employment. For more information please contact Liz Ball Campaigns Involvement Officer Sense 101 Pentonville Road London N1 9LG Liz.ball@sense.org.uk 28 February 2011 1