Memorandum submitted by Trade Union Disability
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
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.
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
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
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
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
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
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
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
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
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
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 routethe NHS, social services departments and
Access to Workand 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.
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
(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
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
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
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