Select Committee on Work and Pensions Written Evidence

Memorandum submitted by Trade Union Disability Alliance

  The Trade Union Disability Alliance (TUDA) brings together disabled trade unionists with affiliated branches and trade unions from across the trade union movement to move forward on issues affecting all disabled trade unionists.

  As well as this collective expertise, the author of this response has personal experience of moving from Incapacity Benefit into work, of the Access to Work and Disabled Persons Tax Credits schemes and of local authority social care provision. In the summer of 2005 she also conducted face-to-face 45-minute interviews with more than 50 unemployed disabled people looking at their past, present and future educational, training and career development needs.

  TUDA's work is defined by the social model of disability. We define disabled people as people who have a mobility and/or sensory impairment, and/or a chronic illness or condition, and/or learning difficulties, and/or are users/survivors of the mental health system.


1.  Discrimination

  TUDA believes that the overwhelming reason why so many more disabled people are claiming Incapacity Benefit than 25 years ago has been grossly understated by the Government: namely, the fact that the discrimination disabled workers face within the workplace has increased. Unless and until the Government focuses much more actively on workplace discrimination and introduces much more active strategies to tackle this, no real progress can be made in getting disabled people back into the workforce.

  According to the Government's own figures, 80% of people who become disabled are in work at the time. However, only 60% are in work a year later, and only 36% are in work the year after that: ie more than half of all workers who become disabled lose their jobs within two years. Far from this being the fault of GPs who encourage people to believe they are incapable of work once they develop an impairment or long-term health condition, this is the responsibility of employers who have no desire to employ anyone whose productivity they regard as being affected in any way. Employers either fail to make reasonable adjustments at all or make inadequate reasonable adjustments, and pressurise workers to resign in many different ways, both subtle and direct.

  Once they are unemployed, disabled people are four times less likely than non-disabled people to be able to obtain work. And when disabled people do get jobs, one in three are out of work again by the following year, compared with only one in five of non-disabled people. Again, employers have no desire to employ anyone whose productivity they regard as being affected in any way. There is clearly a major problem with workplace discrimination within the United Kingdom. The experience of the United States shows that only punitive legal action has any effect on this.

  However, only a minority of disabled people are in a position to launch an Employment Tribunal claim when they face workplace discrimination, and of these less than one in 20 result in a judgment for the claimant. Even then, Tribunals have no power to order employment or reinstatement. Disabled people are necessarily at a major disadvantage when it comes to bringing Tribunal cases, which are also far lengthier and more complicated than other employment law cases. Yet they currently have no access to legal aid for representation within Tribunals. It is unsurprising then, that 50% of all disabled workers are unemployed.

  We welcome the Government's aim of educating employers about the benefits of employing disabled workers. However, in order to reduce the number of disabled workers claiming Incapacity Benefit, the Government needs to go much further than this, including taking punitive action. We believe the Government needs to launch a detailed strategy, in partnership with the trade union movement, to tackle workplace discrimination. In particular, this needs to include:

    —    Funding for the trade union movement to implement disability equality policies, as laid out in the TUDA Trade Union Charter for Disability Equality (attached).

    —    Ongoing funding for the trade union movement to train workplace representatives in tackling disability discrimination, using Amicus's Disability Champions scheme as a model for this.

    —    The legal aid for disability discrimination cases. Given the scale of the problem and the complexity of discrimination cases, it is quite unrealistic to expect the trade union movement to represent disabled workers effectively within Tribunals without access to external funding for this.

    —    The definition of disability in the DDA represents a huge barrier for disabled seeking to challenge discrimination and resolve workplace problems. (It is the most common reason for applications under the DDA to fail). It is confusing for employers as well, and based on an outdated "medical model". It needs to be scrapped and replaced with a definition based on the "social model". It is a nonsense that employees have to wait until their impairment can be shown to have had a substantial effect for 12 months before they are legally entitled to a reasonable adjustment. By this time in most cases they will have lost their job and their condition may have further deteriorated as a result of failure to put in place adjustments to work practices.

    —    The introduction of measures to secure broader changes to the workplace - not just relying on individuals to bring claims and indirectly through this mechanism provide the incentive for employers to introduce genuine equal opportunities in their workforce. Contract compliance has been shown in USA to be an effective motivator for change. A positive duty to promote disability equality should be imposed on the private sector.

2.  The "Long hours, short breaks, work when sick" culture

  Discrimination has grown alongside working hours, with British workers now routinely expected to work the longest hours in Western Europe. The predominant culture is now one of long hours, shortened or missed break periods and pressure to take additional work home. It is unsurprising that disabled workers who would be able to work successfully under best practice working conditions are unable to work under the conditions that are now widespread in British workplaces. Nor it is surprising that there has been such a growth in the number of people claiming Incapacity Benefit because of stress-related conditions when workplace stress has increased so dramatically.

  It is also unsurprising that many workers suffer long-term health problems as a result of this employment culture. Far from us living in a "sick note" culture, workers are reluctant to take adequate time out to recuperate from illnesses or even to receive early treatment from their GP when symptoms develop. There is substantial research to show that long-term health problems develop as a result of the failure to take adequate short-term sick leave, and that this is a bigger problem in the United Kingdom than in the rest of Western Europe.

  We welcome the Government's aim to create healthier workplaces. However, without challenging this "long hours, short breaks, work when sick culture", including legislating further to protect workers' rights, we fail to see how they will succeed in making any real impact. And without doing so, more and more workers will continue to develop chronic health problems and become unemployed. At the same time, it will be impossible for many disabled people to re-enter the workforce who could otherwise do so.

3.  Lack of flexible working rights

  Many disabled people are not covered by the limited rights the Disability Discrimination Act provides for disabled workers to ask to work flexibly. Even when workers are covered by the DDA, Tribunals do not seem to regard flexible working as being a "reasonable adjustment". However, the ability to work flexibly is often crucial to retaining employment. For example, workers may need to attend regular medical appointments, and/or avoid travelling during the rush hour, and/or work from home on "bad" days, and/or work shorter hours one week and longer the next as their condition fluctuates.

  The introduction of the right to ask to work flexibly for parents has caused considerable ill-feeling amongst workers who do not have these rights. Rather than extend the right to ask to work flexibly to all disabled people, we believe that flexible working rights should be extended to every worker irrespective of whether they are disabled or have children. We also believe that the Government should put considerable resources into educating employers about the benefits of flexible working.

4.  "Disability leave" entitlement

  We believe that all disabled workers should be entitled to take disability leave, not just when they become disabled but when their condition makes it impossible for them to work for short periods. (Currently this is classed as "sick leave", with resulting costs for employers and a tarnished employment record for disabled workers.) This must be accompanied by the means to move easily and swiftly between disability benefits and paid work, rather than expecting employers and disabled workers themselves to meet the costs.

5.  The National Health Service

  Many disabled workers are unable to remain in employment because of the under-funding of the National Health Service. Often workers who become disabled have to wait for a year or more to see a consultant for the first time. This in itself allows many acute, treatable conditions to become chronic conditions that can only be managed rather than cured. People with conditions that are still treatable when they do see a consultant may then wait years before tests and then surgeries or other treatments are completed. These delays not only cause unemployment; they make it extremely difficult for workers to re-enter the workforce at a time when their skills and experience are still current.

  To make matters worse, in order to cut costs, the focus of the NHS is on diagnosis rather than treatment when conditions are not life-threatening. Many people with back problems, stress and depression receive no treatment at all, while the majority who do receive treatment are limited to medication which is proven to be the least effective, though cheapest, treatment option. Without ongoing treatment and support, it is unsurprising that so many people with back problems, stress and depression in particular are forced to rely on benefits rather than working.

  Another effect of cost-cutting is the almost complete withdrawal of GP services outside of office hours. It is obvious that disabled people who use medication should receive regular reviews, and many conditions require regular monitoring by GPs regardless of whether any medication is being prescribed for them. When receiving these services is incompatible with working, again, it is hardly surprising that people who require regular GP appointments remain on benefits.

  Medical culture is also unhelpful when it comes to disabled people receiving adequate and appropriate treatment. The lack of a holistic approach means that, while back pain is a major cause of disability within the United Kingdom, diagnosis and treatment is still split between the neurology, rheumatology and orthopaedic departments. Patients with spinal problems are therefore required to visit as many as three different specialists, all of whom are general specialists in their area rather than being back specialists. There are also considerable delays while a patient is referred between departments. Setting up specialist back clinics and training doctors as spinal specialists would have a major impact on the numbers of people with back pain claiming Incapacity Benefit, and would also be a far cheaper means of providing services to this group.

  It will be impossible to have a real impact on the numbers of disabled people claiming Incapacity Benefit without increased funding for the NHS as well as a change in culture. In particular, there needs to be:

    —    Early diagnosis and treatment before conditions become chronic.

    —    Ongoing treatment aside from medication for people with conditions such as stress, depression and back pain.

    —    Expansion of GP surgery hours so that GP services can be accessed during the evenings and weekends.

    —    A holistic approach to disability and ill-health, and in particular the establishment of specialist back clinics.


  In addition to the above causes of unemployment, unemployed disabled workers face a number of barriers when trying to enter employment.

1.  The difficulty in reclaiming benefits after temporary employment

  Many unemployed disabled workers wish at least initially to opt for temporary employment. There are two main advantages to this: recently disabled workers can use temporary employment to test their abilities and limits before trying to re-enter permanent employment; and workers with fluctuating conditions can use temporary employment to improve their income and long-term job prospects during times when their condition is most manageable.

  However, while benefits are now protected for 12 months when disabled people leave Incapacity Benefit to enter permanent employment, claimants report extreme difficulty in trying to sign off for a period of days or weeks only. This is in itself an incentive to fraud, but in reality the vast majority of disabled people turn down temporary employment opportunities because they feel unable to face the bureaucracy involved in dealing with the benefits system if they come off benefits temporarily, and cannot manage financially when there is a delay in having their benefits reinstated.

  The ability to access temporary employment is crucial if the overall number of disabled workers claiming Incapacity Benefit is to be reduced. For many disabled workers, moving long-term between temporary employment and benefits and back again is their only realistic employment option. It is essential that a simple process is introduced involving one short form or the accessible equivalent that would allow unemployed disabled workers to take up temporary employment opportunities without having to wait for their benefits to be reinstated after the work finishes, and without receiving overpayments which leave them in debt to the Benefits Agency.

2.  The lack of adequate social care

  Adequate and appropriate social care is essential in order for many disabled people to retain/obtain employment. TUDA recently responded to the Government's Green Paper on social care, "Independence, Well-Being and Choice" (copy attached). We concluded that: "it will be impossible for the Government's employment strategy for disabled people, set out in `Improving the Life Chances for Disabled People', to succeed if service provision is not first increased."

  Adequate and appropriate social care must be provided before the numbers of people claiming Incapacity Benefit can be significantly reduced.

3.  The cost of social care

  Disabled people with high social care needs are generally unable to enter the workforce because of Independent Living Fund and local authority regulations which mean that social care is only free while claiming benefits. This is not only a disincentive to employment; it means that disabled people with high social care needs are literally prevented from working because they cannot afford to pay for their care needs. As evidenced in our response to the Government's Green Paper on social care, care needs also rise once a disabled person is in work.

  The abolition of charging for social care is essential if disabled people are to be enabled to come off Incapacity Benefit and enter the workforce.

  The cost or prescriptions required for chronic conditions can also be a significant barrier to moving off benefits and thus losing access to free prescriptions. England should follow the Wales lead a re-instate free prescriptions.

4.  No access to work provision for job-seekers

  Another major barrier to disabled workers moving off Incapacity Benefit into work is the lack of Access to Work provision for job-seekers. For example, the Government's Access to Work scheme will provide taxi transport to allow a disabled person to travel to and from their workplace, but will not provide taxi transport to allow a disabled person to travel to and from the Job Centre or other employment agencies. They will pay for a reader to support a visually impaired or print impaired person within the workplace, but not to read job advertisements. They will provide a support worker to help a disabled person in their work, but not in their job-seeking. They will pay for a laptop computer with speech recognition to enable a disabled person to work, but not to apply for jobs.

  While some alternative provision does exist through the Jobcentre Plus system and contracted specialist agencies, disabled jobseekers report that this is entirely and wholly inadequate. It is also extremely unhelpful to have one system for jobseekers and another one for workers. It is essential to extend the Access to Work scheme to disabled jobseekers before any real impact can be made on the number of people claiming Incapacity Benefit.

5.  Delays in access to work provision

  Throughout the country, disabled workers also report significant delays in the provision of support via the Access to Work scheme once they enter employment. This can result in job offers being withdrawn without this being in breach of the DDA, and certainly affects employers' decision to employ disabled workers in the future once they have experienced the delays with one employee. When support is put in place it is often inadequate, and workers may wait years before appropriate support is finally provided.

  If Access to Work provision is extended to jobseekers, this will reduce the number of workers affected by delays in providing support once a job offer has been received, as many workers will already have the support structures in place that they need. However, the system still needs to be streamlined to ensure that all disabled workers are enabled to start work with adequate and appropriate support in place within four weeks of a job offer being received. It is unrealistic to expect an increase in the number of disabled people obtaining work and coming off Incapacity Benefit until this has happened.

6.  Inadequate information about access to work

  The most relevant information about the Access to Work scheme for disabled jobseekers is the availability of ongoing grant funding for support workers and taxis to work, together with grant funding for specialist equipment such as ergonomic seating and laptop computers. Once in the possession of this knowledge, Incapacity Benefit claimants can begin to make an informed decision about whether they are able and ready to return to the workforce.

  However, publicity for Access to Work concentrates on the provision of advice for employers and employees and does not advertise these grants at all, and so there is little awareness of the extent of the provision that is actually available. Similarly, Job Centre staff seem generally unaware of the assistance available through Access to Work, and even the specialist Disability Employment Advisers assigned to disabled job seekers are often more or less ignorant about how Access to Work actually operates in practice. Often workers report that they would never have become unemployed in the first place if they had been aware of the Access to Work provision available to them.

  Information about the extent of the assistance available through the Access to Work scheme needs to be made available to all disabled workers and jobseekers. All Job Centre staff need to receive training on Access to Work in order that they can advise their clients correctly. Disability Employment Advisers need access to further training and more detailed information. Only then will Incapacity Benefit claimants be in a position to make an informed decision about their suitability for work.

7.  Planned cuts in access to work provision

  The Government is now proposing withdrawing Access to Work provision for the public sector. This will inevitably result in higher unemployment rates for disabled workers and an increase in the number of people claiming Incapacity Benefit. Instead Access to Work provision should be increased so that best practice is mirrored throughout the country.

8.  Lack of access, and medical and cultural attitudes, to mobility aids

  Many people currently claiming Incapacity Benefit will not be in a position to obtain work unless they have access to appropriate mobility aids and assistive technology. In particular, a large proportion of people with back and other mobility problems, and/or with conditions that limit their energy, are unlikely to be able to make a successful return to work unless they use wheelchairs.

  Wheelchairs deal with the issue of appropriate ergonomic seating at the same time as removing the need to stand and walk for long periods, and so dramatically reduce pain and fatigue levels. This in turn reduces the frequency with which conditions become acute, as well as enabling workers to work on "bad" days when it would otherwise be impossible for them. For the majority of this group, powered wheelchairs will be necessary because of the physical upper body strength needed to operate a self-propelled chair.

  However, wheelchair provision is strictly limited through the NHS and social services departments. In general, social services departments will not provide powered wheelchairs, whereas the NHS will only provide powered chairs to people whom they consider to be seriously disabled. If people are able to manage within the home and their immediate social environment without wheelchairs, no wheelchairs will be provided at all, however necessary they may be for work. Where manual chairs are provided, these are the cheapest available and so are very heavy. This makes it impossible for most disabled people to use them for more than very short distances, and therefore these chairs are unsuitable for employment purposes. Access to Work will currently provide appropriate wheelchairs to meet employment-related needs, but there are proposals to strictly limit this provision in future.

  The current attitudes of rehabilitation professionals, particularly physiotherapists, also mitigate against the use of mobility aids. In particular, the use of wheelchairs is seen as being a failure on the part of both the therapist and the disabled person concerned. From a physiotherapist's perspective, it is overwhelmingly important for a disabled person to be able to stand and walk, however restricted and fatiguing this is. Professionals are aware that, once provided with a wheelchair, the majority of disabled people will continue to use it because of the increased mobility and reduced pain and fatigue that this creates. For this reason even short-term use of wheelchairs is heavily discouraged, despite the fact that many people could return much more quickly to work under these circumstances.

  Medical attitudes towards wheelchairs are reflected in cultural attitudes. Despite the fact that 95% of wheelchair users have some ability to walk, wheelchair users are perceived by the media and general public as being "wheelchair bound" and unable to walk at all. Anyone who has any ability to walk therefore finds it hard to envisage themselves as a wheelchair user, even if an employment adviser encourages it. They also fear, quite justifiably, that with the current level of media and public ignorance, they will be seen as dishonestly claiming a medical condition that they do not have if they become a wheelchair user. This in turn exposes them to harassment, abuse and violence.

  Overcoming medical and cultural attitudes to wheelchair use will not be easy or quick, but must be central to any strategy to return disabled people to work. Adequate and appropriate wheelchair provision needs to be greatly increased via every route—the NHS, social services departments and Access to Work—and plans to limit wheelchair provision via Access to Work should be abolished.

9.  Government and media attitudes to disability

  In the past few years there has been a concerted effort by the Government, reflected in the media, to classify unemployed disabled workers as "scroungers" and "benefit fraudsters" who reflect a "sick note" culture. This has enabled ancient and deeply ingrained stereotypes about disabled people to become common currency once again, and a number of myths about Incapacity Benefit claimants in particular to be widely regarded as being factual, including by MPs. This is deeply offensive and inappropriate in a 21st century society, particularly given the new public sector duty to promote disability equality.

  As we have already said above, we do not believe that this "sick note" culture exists. Fraud levels too are in fact very low. However, the impact of these attacks on unemployed disabled workers as a whole cannot be underestimated. It is not surprising that Incapacity Benefit claimants are reluctant to take part in sporting and fitness activities and other activities that would increase their ability to re-enter the workforce when they feel judged by everyone around them. Disabled people already suffer the highest level of abuse, harassment and violence of any group in the country. Disabled people are therefore very reluctant to take part in any activity that would lead people to judge them as lying about their condition.

  Government and media myths about scroungers and fraudsters completely obscure the reality of life for disabled people. It is unsurprising that someone may appear to be "perfectly all right" when seen outside of their home, given that they are only able to leave their home at times when their condition is most manageable. It is equally unsurprising that someone may be able to take part in physical activity for a short period, but need substantial periods of rest afterwards and not be able to do this regularly. It is also unsurprising that someone who has great difficulties lifting is still seen carrying their shopping when there is no one else to do this for them, yet they will suffer considerable pain and fatigue as a result. And of course many disabled people appear to be much more able than they would be if working, because the physical and mental demands of that work are what causes their condition to become acute.

  The Government's active promotion of myths and stereotypes about disabled people as being dishonest, lazy scroungers is increasing violence, harassment and abuse against disabled people. It also encourages disabled people to opt out of active participation in their society for fear of the consequences. If the Government is to succeed in substantially reducing the number of Incapacity Benefit claimants, it will have to reverse its policy of demonising disabled people and educate the media and the general public about the reality of disabled people's lives.

10.  Housing

  Many people find that their housing needs change when they become disabled and that their current accommodation is inappropriate. Inappropriate housing can also impact severely on mental health, and can be a major barrier to users/survivors of the mental health system entering employment. There are two major problems with housing that affect disabled people's ability to work:

    (i)  The lack of social housing means that many disabled people are trapped in housing that does not meet their needs. For example, many people with mobility problems are still trapped in housing on the first-floor or above with no lift access, or have steps leading up to the ground floors of their properties. The toll that this takes on their physical health and energy, the impact on their impairments, and the lack of storage facilities for their wheelchairs, all leaves them unable to work when they would otherwise be able to do so. Meanwhile many people with mental health problems are trapped in the worst type of social housing, where they feel so unsafe that every aspect of their lives is affected.

    (ii)  Homeowners, housing association tenants and private tenants all report major delays in accessing Disabled Facilities Grants. Sometimes people may wait many years for grant applications to be processed, with local authorities avoiding time limits on grant processing by refusing to allow disabled people to make an "official" application until years after the process has actually started. Local authorities may also demand large financial contributions towards adaptations when disabled people have little or no access to credit facilities, and could not afford the repayments if they did. The criteria for adaptations also rules out anything which has purely "therapeutic" benefits, although these are the benefits which are most likely to enable disabled people to be able to work.

  Disabled people are also trapped when they are provided with "sheltered" housing where the rent includes high charges for support. While they remain on benefits, these charges are paid for them, but when they are in work, they become liable for the charges themselves. This means that they literally cannot afford to work. As above, charging for all types of social care provision needs to be abolished before any real impact can be made on disabled people's ability to work.

  The Government needs to rethink its housing strategy taking into account the needs of disabled people, including how this impacts on their ability to work. The supply of social housing needs to be increased, by buying existing housing as well as by building new homes. Since the vast majority of us will eventually become disabled, all new housing needs to be suitable for adaptation for disabled people, not just the small percentage that is currently being built. The system for accessing Disabled Facilities Grants needs to be streamlined, and increased resources made available for this. The criteria for Disabled Facilities Grants needs to be changed so that therapeutic benefits are also considered to be legitimate.


  The picture that the Government paints is of disabled people who are at best unaware of their actual ability to work, aided in this by GPs who are ignorant of current research showing the benefits of working. We believe that this could not be further from the truth. The reality is that disabled people themselves, together with their GPs, are the only ones expert enough to judge their abilities and limitations within the situations they face. In terms of professionals, GPs are the only workers who have long enough ongoing contact with their patients to be able to judge the situation accurately.

  Of course it is helpful for disabled people to receive professional support and advice in making these judgements. In particular, it is helpful for them to have information about the support available once they return to work via Access to Work and the Tax Credit system, along with their legal rights to reasonable adjustments. But the support provided needs to be accurate and appropriate, and in the vast majority of cases is neither. Professionals providing support are also under extreme pressure to meet targets to move people off benefits into work rather than being encouraged to listen to what disabled people are actually telling them.

  We believe that disabled people need to be at the centre of efforts being made to help them to re-enter employment. They need appropriate and accurate information to be provided to them to enable them to judge for themselves whether and when they can return to the workforce. Rather than being assisted by "experts", the expertise of disabled people themselves needs to be recognised as being central to efforts to return to work.


  We find it extraordinary that there is no defined role for trade unions in the Government's employment strategy for disabled people. As above, we believe that trade unions need funding to implement disability equality policies as laid out in the TUDA Trade Union Charter for Disability Equality (attached), and ongoing funding to train workplace representatives in tackling disability discrimination, as well as support to take discrimination cases via the legal aid system.

  We also believe that trade unions should be encouraged to play an integral role in strategies to tackle disabled people's unemployment, and should be consulted on how this might best work in practice. In addition, we believe that funding should be provided so that all unemployed disabled workers are provided with information about the trade unions that might be relevant to them and the help and support that these unions can offer within the workplace. Funding should also be provided so that disabled workers re-entering employment do not have to pay their first year's membership subscription to the relevant trade union themselves, thus encouraging them to join and take advantage of the support on offer.


  We believe that the Government's analysis of why there has been such a substantial increase in the numbers of people claiming Incapacity Benefit in the past 25 years is deeply flawed. As listed above, there are many barriers to disabled people retaining or re-entering employment, but we do not believe that the "attraction" of remaining on "over-generous" benefits is one of them. Nor do we believe that a "sick note" culture has developed. Rather, we believe that the increase in working hours alongside worsening working conditions has impacted on many workers' health, as well as making it impossible for many disabled people to work who otherwise could do so.

  The proposed "reforms" to the Incapacity Benefit system will result in increased poverty, stress and misery for many thousands of disabled people. However, it is the least important of any of the factors that affect disabled people's ability to work. The Government's aim to increase the number of disabled people in work is doomed to failure unless and until they tackle all of the factors affecting disabled people's ability to work, including putting an end once and for all to the demonising of Incapacity Benefit claimants.

Dr Ju Gosling

3 October 2005

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