Joint Committee on the Draft Disability Discrimination Bill

Joint Committee on the Draft Disability Discrimination Bill Written Evidence

DDB 19 Mind

Joint Scrutiny Committee on the Draft Disability Discrimination Bill

Mind's Submission

February 2004

Mind

Mind is the leading mental health charity in England and Wales. We work for a better life for everyone with experience of mental distress by:

advancing the views, needs and ambitions of people with experience of mental distress; promoting inclusion through challenging discrimination; influencing policy through campaigning and education; inspiring the development of quality services which reflect expressed need and diversity; achieving equal civil and legal rights through campaigning and education.

In forming our views we consult with the organisation's extensive networks including people with experience of mental distress and Local Mind Associations who provide a wide range of community support services including advice, advocacy and support on employment and benefit issues.

Mind
15 - 19 Broadway, London E15 4BQ
020 8519 2122
www.mind.org.uk

Registered Charity No. 219830
Registered No. 424348 England

SUMMARY

1. This submission focuses on the definition of disability.

2. We welcome the Government's proposal to expand the definition to include people diagnosed with HIV, MS and cancer.

3. Those who have experienced mental health difficulties are subject to widespread discrimination in employment and in relation to goods and services. This has the effect of compounding the social exclusion that people who experience mental distress may already be subject to. Among disabled people, people with mental health problems are the most socially excluded. The protection of the DDA is key to improving this situation.

4. The current definition of 'disability' is failing to cover effectively people with mental health issues. The Disability Rights Task Force and the Disability Rights Commission have both acknowledged this as a problem. This failing is unique to UK discrimination law.

5. The medical conditions which are particularly difficult to bring within the scope of the DDA are schizophrenia, eating disorders and depression.

6. The three elements of the definition which we believe need revision are:

The list of day-to-day activities which are currently biased towards physical impairments;

the requirement that a mental impairment has a substantial, adverse, long-term effect on day-to-day activities which often excludes cases of depression where typically, the effect is severe, but short-term;

the requirement that mental illnesses need to be clinically well recognised, which is itself discriminatory as this is not a requirement for physical impairments.

7. Mind proposes the following amendments to better encompass people with mental health difficulties into the definition of disability:

Add to the day-to-day list of day-to-day activities "(i) thought processes, perception of reality, emotions or judgement."
- OR
- to (h), add "or ability to care for oneself"; AND "(i) perception of reality; (j) ability to communicate."

For mental impairments consisting of depression, reduce the qualifying period from twelve months to six months.

Through guidance or regulations, clarify how the definition of progressive condition should be interpreted for depression in order to ensure that serial, but discrete episodes of depressive illness are covered.

Remove the requirement that mental illness be clinically well recognised.

Submission to the Joint Scrutiny Committee on the Draft Disability Discrimination Bill

1.1 Mind welcomes the opportunity to contribute written evidence to the Committee.

1.2 Through Mind's legal casework service, through our policy work and drawing on the experience of service users and service providers in our extensive networks[60] we have a particular experience of disability discrimination as it affects people with mental health problems. We were a member of the Disability Rights Task Force and are members of the Disability Charities Consortium (DCC).

1.3 In this submission we concentrate on one issue raised in the joint DCC submission to the Committee, namely the impact of the definition of disability in the Disability Discrimination Act (DDA) on people with mental health problems.

1.4 Our views have been reached in consultation with other organisations. The following organisations have given their express support to this submission: The Sainsbury Centre for Mental Health, The Royal College of Psychiatrists, Rethink, United Response, Manic Depression Fellowship, Turning Point, POPAN, MACA, The Mental Health Foundation and the British Psychological Society.

TERMINOLOGY

2.1 In the DDA the term 'mental impairment' is used. This covers people with learning disabilities and those with mental ill health. In the popular mind and in the legislation itself (in the concept of normal day-to-day activities) there is a conflation of these two quite distinct and different impairments. The DDA also refers to 'mental illness' and limits the coverage of the Act to people with a 'clinically well recognised' mental illness. In this submission we confine ourselves to the situation of people with mental ill health, or as Mind prefers to term it, people with mental health problems.

Context

3.1 One in seven of the population encounter a period of mental health problem in their lifetime, for many as a single episode. A much smaller group of people experience chronic and enduring mental health problems.[61] Very few of this latter group are likely to be in the paid workforce but could benefit from DDA protection in all other areas of life.

3.2 By comparison, some individuals' mental health problems may recur several times over a lifetime or be episodic in nature. Others may have an underlying health condition that can be controlled by medication or other coping mechanisms. For most people in these categories participation in the paid workforce is achievable.[62]

3.3 Nevertheless, as countless studies and statistics demonstrate,[63]people with Mental health problems remain under represented in the paid workforce, largely due to discrimination.[64] They are the group most socially excluded and subject to more discrimination than any other group of disabled people.[65]

3.4 Mental health problems are often disruptive of social, family and work life and can lead to job loss, isolation and poverty. The path to recovery will usually involve re-entry to social and working life. However discrimination can short-circuit that process, undermine self-esteem and exacerbate the illness. This destructive cycle brings about, above all, suffering for individuals, but also a loss of talent for society and cost to the public purse in health/social care and welfare benefits. It feeds public prejudices. It is a matter of grave and legitimate public concern that these problems be addressed. The DDA has a very significant direct role to play in this regard

The Role of the DDA

4.1 Mind's prime concern is for two groups of people that need the protection of the DDA - those with ongoing mental health problems and those who have had a brief brush with mental ill health and never work again because of discrimination. For this latter group, ability to work is not reduced in any way except by stigma. The DDA is key to the protection of disabled people from discrimination in recruitment. This discrimination is so severe for people with mental health problems that the issue of whether or not to disclose on an application form a previous history or current condition is the single most vexed issue faced when seeking employment. It also prevents people from applying for jobs.[66]

4.2 Once in work, if a person's reluctance to reveal his/her current disability can be overcome and the employer does his/her bit, reasonable adjustments can be very effective in keeping a person with mental health problems in employment.[67] Reasonable adjustments do not typically involve costly structural changes, but rather attitudinal changes and willingness to be flexible around hours or work policies. Given that many conditions fluctuate in their occurrence, adjustments may only be necessary for short periods. In addition, such adjustments often have positive knock on effects for the mental health of the entire workforce.[68]Employers in the recent Work Foundation study were very positive about the success of modest work adjustments in retaining employees with mental health problems.[69]

4.3 People with mental health problems do not just experience discrimination in employment. They may also need the protection of the DDA when looking for accommodation or accessing goods and/or services such as insurance, or when seeking vocational training.

The Problem with the DDA

5.1 The definition of disability is the gatekeeper of civil rights for disabled people. The Disability Rights Task Force acknowledged the shortcomings of the definition of disability for people with mental health problems and it recommended that a number of aspects of the definition be addressed.[70] The Government responded to these recommendations by tasking the DRC to monitor cases where the definition of disability was pivotal. The survey of cases informed the DRC's conclusion that changes to the definition were needed.[71]

5.2 The case for legislative change has won support in Parliament. In 2001 - 02, the House of Lords were persuaded by the argument for change and passed amendments to the definition of disability in two private member's bills, with the support of the sponsoring peers.[72]

The Case for Change

6.1 There are three distinct problems with the definition of disability that might be said to demonstrate a bias in the legislation against mental health issues:

the list of normal day-to-day activities is framed with physical impairments in mind.[73] To the extent that it covers mental impairments, it focuses on learning disabilities rather than mental illness;
severe depression typically lasts less than twelve months, but even a short episode can attract much discrimination[74] at least comparable to a diagnosis of HIV or cancer;
the need to prove that a mental illness is clinically well recognised creates inequality in the very definition of disability. In no other jurisdiction's disability legislation is there a similar provision.[75]

6.2 DDA case law bears out Mind's concerns. As mentioned above, the DRC carried out a survey of all cases between 1998 - 2000 in which employment tribunals (ET) found that the applicant did not meet the definition of disability. They found that the largest group who failed to meet the definition were people with Mental health problems (42 out of 210) and in at least half of those 42 cases the decision, although technically correct, seemed unfair in its result.[76]

DAY-TO-DAY ACTIVITIES

7.1 The relevant day-to-day activity for people with mental health problems listed in the DDA is 'memory or ability to concentrate learn or understand'. The Guidance issued under the Act states that, '[a]ccount should be taken of the person's ability to remember, organise her thoughts, plan a course of action and carry it out, take in new knowledge or understand spoken or written instructions'.[77] Most of these functions relate to learning disabilities as distinct from mental health problems.

CASE STUDY Dr Goodwin had a diagnosis of schizophrenia. After some time in employment, as his condition deteriorated, he experienced paranoia about his colleagues' intentions towards him, hallucinations and thought broadcasting (believing that others could hear his thoughts). His auditory hallucinations would cause him to leave the office or building to act on their instructions. On one occasion, Dr Goodwin wandered down a railway line in order to kill himself. His hallucinations also interrupted his concentration at work. The symptoms subsided after treatment with medication and his psychiatrist reported that there was no reason why he should not return to work. Nevertheless the Civil Service dismissed him. The ET found that he was not disabled because he was able to do everything mentioned in Guidance (referred to above). They decided therefore that the interruption to his concentration was not substantial. It was also decided that Dr Goodwin's perception of risk of physical danger was not affected, as he was well aware that walking along a railway line would present a risk of physical danger.

The decision was reversed on appeal by the Employment Appeal Tribunal (EAT) taking a common-sense approach - "… it seemed to us most surprising that any tribunal should conclude that a person admittedly diagnosed as suffering from paranoid schizophrenia … fell outside the definition [of disability]." He could not of course satisfy the daily activity of 'perception of risk of physical danger' since his perception was accurate.

However the essence of his condition lay in the disordered perception of reality rather than inability to concentrate.[78]

7.2 This case leaves the legal status of schizophrenia as a disability profoundly doubtful, despite the then Minister for Social Security and Disabled People William Hague, specifically identifying people with schizophrenic disorders as a group that the DDA was designed to cover.[79] Hague also stated that, "The Government have had a clear policy - that the people we intend to cover are those … people who are disabled in commonsense terms."[80]

7.3 Another category of cases involves people who suffer from anorexia nervosa or other eating disorders. It is both their ability to care for themselves and their perception of reality that are disordered, rather than primarily an inability to concentrate or learn.

CASE STUDY A nurse had a history of bulimia.[81] After revealing her medical history her application for two posts was rejected, the NHS Trust admitting that she would have been fit for the job except for her medical history. The ET received evidence that she was able to work competently despite her condition. They discounted the medical evidence of the applicant's 'poor concentration' because she was able to complete two modules of a course at the time, and they did not take seriously the argument of her doctor that she lacked perception of danger. She clearly did understand the risks associated with her eating disorder. Over a two-year period she binged and vomited regularly, weighed herself several times a day, and inflicted physical injury on herself.

7.4 Whilst 'failure to perceive danger' is covered under sch1 4 (1) (h), tragically people with severe mental health problems can be only too aware of the physical dangers to which they expose themselves; and they do so to cause themselves harm or to commit suicide. It is not their perception of risk that is disordered, but their will to live or to care for themselves.

7.5 Likewise depression does not easily fit into the list of day-to-day activities. People who have a depressive condition may exhibit a variety of symptoms. Disruption to normal sleep patterns, withdrawal from social life, loss of appetite, intermittent panic attacks and a persistent pattern of self-harming may all be characteristic of a diagnosis of severe depression. None of these is satisfactorily encapsulated in the list of normal day-to-day activities.

CASE STUDY

The applicant's anxiety and depression made it impossible for him to cope with the pressure of work or home life and to interact with others. However he had no difficulties in cooking or housework, did not complain of lack of memory/concentration and could recall workplace details and could read his evidence and submit to cross examination.

For these reasons he was held not disabled.[82]

7.6 This problem of the definition leads to a situation in court where the applicant's sympathetic medical adviser will give tendentious evidence that exaggerates minor symptoms; the respondent's adviser will be quick to point out the exaggeration; and the Tribunal will find the case not proved.

7.7 The logical solution to the problem would be have day-to-day activity that encapsulates the activities relevant to mental health. The Australian definition of disability (similar to that of other jurisdictions such as Ireland, New Zealand and some Canadian jurisdictions) would suffice.[83]

7.8 An alternative approach would be to add to the list of day-to-day activities factors such as perception of reality, ability to care for oneself and ability to communicate.

7.9 One effect of these amendments should be to make the process of establishing the definition of disability more straightforward, to avoid confusing and contradictory medical evidence which causes problems for the applicant and for the Tribunal and to give greater certainty to employers and employees. The Employers' Forum on Disability has indicated to Mind that in their view many employers will, in fact, welcome greater clarification regarding the definition for people with mental health problems.

7.10 An expanded definition will inevitably bring more people within the scope of the Act although it is hard to estimate how many. In some court cases the definition is conceded and applicants who are possibly outside its scope can proceed with their case. However it is clearly not satisfactory to rely on the decision of employers not to push the legal point with regards to definition.

7.11 Proposal: add to list of day-to-day activities "(i) thought processes, perception of reality, emotions or judgement."

to (h) add or ability to care for oneself; AND"(i) perception of reality; (j) ability to communicate."

Substantial and Long-term Adverse Effect

8.1 Under section one of the DDA the 'impairment' must have 'a substantial and long-term adverse effect on his ability to carry out normal day-to-day activities.' Long term is defined to be a past period of at least twelve months or likelihood that the period that an impairment will have substantial effects will be twelve months.

8.2 These provisions cause real problems for people with depression:

depression is typically severe though relatively short-lived but discrimination against the person is commonplace[84]
once there is a medical record of having had depression in the past, however distant or short-lived, discrimination is common. At Mind we find this particularly so in insurance and entry into training or occupations. We can only speculate how often a person who suffers any other illness in the short term and apparently recovers to full health will then suffer discrimination because of that past.

8.3 As NICE reports in its Draft Guidance on Management of Depression, "… depression is usually a time limited disorder lasting up to six months…".[85] In addition, several studies have supported the observation that, no matter what the triggering event for depression, the duration in a majority of cases is likely to be around six months.[86]

8.4 A period of depression may be sufficiently severe to require the person to have sickness leave or hospital treatment, but may last for as little as three months. Mind regularly has to advise employees who have been dismissed because of a 'nervous breakdown' but who are well enough to return to work after several months, that they probably have no protection. Reports from the ETs also show this to be a consistent problem.[87]

8.5 When including asymptomatic HIV and cancer the Disability Rights Task Force accepted that the DDA should cover conditions that are known from the case law to give rise to discrimination because of the stigma attached to the condition, even though, in the case of cancer it might be short-term.[88] In Mind's view this reasoning should be applied to the case of depression. There is not the same degree of evidence that other short-term conditions give rise to such discrimination.

8.6 Proposal: for mental impairment consisting of depression, reduce the qualifying period from twelve months to six months.

Recurrent Conditions

9.1 Depressive illnesses have a strong tendency to reoccur. At least 50% of people following their first episode of major depression will go on to have at least one more episode, with those experiencing their first episode of depression before the age of 20 being particularly susceptible to relapse.[89]

9.2 Under the DDA, if the 'substantial adverse effect' of an impairment has not lasted for twelve months but is likely to recur, the person will also be covered. The aim of this provision was to cover impairments whose effect on day-to-day activities fluctuates. However case law has shown that this provision is not effective in the case of depression. There are differences of view within the medical profession as to whether (and when) episodes of depression are manifestations of an underlying condition and when they are discrete episodes.[90] As a result experts often disagree in court on the issues. Furthermore, doctors often, understandably, feel reluctant to testify that a person with a first episode is likely to have a recurrence.

Case Study

T first suffered from depression in 1993 and then again in 1996. He was treated with medication and counselling until 1998. He was then employed from April to July 1999, at which time he was told his employment would be terminated at the end of his probationary period. On dismissal T experienced episode of depression. Yet T was not covered by the DDA because:

in intervening periods the applicant did not suffer any substantial, adverse effect on day-to-day activities

at the time of the applicant's employment and at the date of the hearing the applicant was free of any substantial adverse effects.[91]

9.3 Proposal: clarify through Guidance or Regulations how the provision for recurrent conditions should be interpreted for depression in order to ensure that discrete episodes of depressive illness are covered.

Clinically Well Recognised Illness

10.1 The requirement that mental illness be clinically well recognised is patently discriminatory. A disabled person, whose sight has been impaired, does not have to prove that the cause of that impairment is 'clinically well recognised'. This requirement puts up an extra legal hurdle for people with mental health problems, which is not applied to any other applicants under the Act. It reinforces a widely held, but erroneous, view that mental illness is entirely different to physical illness. The NHS recently asserted that 40 to 60% of medical symptoms in physical health cannot be explained medically and of the ten most common presenting symptoms in general practice, only 15% will have a clearly attributed physical cause after one year. A physical impairment can be demonstrated for the purposes of the Act by its symptoms rather than its diagnosis, which should be the same for mental health issues.[92]

10.2 During the passage of the DDA in 1995, Ministers repeatedly defended this provision on the basis that 'it is no function of the Bill to cover mild eccentricities, moods, shyness, stubbornness etc … we do not want to open up and widen … claims based on obscure conditions unrecognised by clinicians.' However it was also the intention of the Bill to exclude minor physical ailments such as headaches, colds and allergies, but it has not been thought necessary to class physical impairments within a clinical frame of reference. Moreover the obscure conditions of today are the understood conditions of tomorrow. The obscurity of RSI or ME has not prevented their being protected by DDA once the symptoms are proved.

10.3 The provision produces problems in practice.[93]

Preoccupation with correct labelling distracts the Court from the real issue: has this person an impairment which substantially limits normal day-to-day activities?
The Court may tend to feel that if this cannot be precisely diagnosed it cannot be serious.
The extra legal hurdle it creates for people with mental health problems may make it difficult to overcome disagreements between medical experts.

10.4 Problems of mental health embrace a range of disorders from depression, bi-polar disorders, personality disorders through to schizophrenia. In practice the boundaries may be blurred. In Tribunal cases medical reports can disagree, with different psychiatrists making different diagnoses of the same person, or making a diagnosis which blurs the distinction between different disorders. The provision adds to the confusion and the cost. Despite a move towards court-appointed medical advisers, there is the problem of cost of medical reports - which affects many disabled applicants. For people with mental health difficulties the burden of producing expensive medical reports (for which applicants may have to pay £2,000 plus) already screens out many meritorious applications and contributes to making the legal process extremely intimidating.

10.5 Proposal: remove the requirement that mental illness be clinically well recognised.

Conclusion

11.1 Social exclusion of people with mental health problems is a serious social problem causing suffering to the individuals concerned and damage to society. The DDA has a central role to play in overcoming it.

11.2 The business case for people with mental health problems being protected by anti-discrimination law is the same as it is for other disadvantaged groups and should not need special pleading. It is not within the scope of this submission to explore issues for business arising from our submission but we would be delighted to do so if the Committee wishes to request us to give further evidence.

Rowena Daw

Head of Policy

Mind

Appendix One

From Exclusion to Inclusion: Key Recommendations

The Government should review and consult on aspects of the DDA definition of disability with a view to ensuring an appropriate and comprehensive coverage of mental health conditions.
The concept of covering only 'clinically well-recognised' mental illnesses in the DDA definition should be reviewed and consulted on to identify the advantages and disadvantages of removing the limitation.
The Government should consider whether to extend coverage to those with severe conditions which are not long-term, as can sometimes be the case with some heart attacks, strokes or depression. The wider implications of this proposal would need to be explored to avoid covering temporary or readily curable conditions, such as broken legs, where the chances of recurrence were not significantly increased by them having happened once.

From Exclusion to Inclusion (Dec 1999) Disability Rights Task Force on Civil Right for Disabled People

Disability Equality: Making it happen - First review of the Disability Discrimination Act 1995 : Key Recommendations

The list of normal day-to-day activities should be revised to include 'the ability to communicate and interact with others'.
Day-to-day activities should be worded in such as way as to ensure that self-harming behaviour is covered.
The requirement that a mental illness be 'clinically well recognised' should be removed.
Where an individual's ability to carry out day-to-day activities is substantially affected as a result of depression, the 'long term' requirement should be reduced from twelve to six months.

Disability Equality: Making it happen - First review of the Disability Discrimination Act 1995 (2003) Disability Rights Commission

60 210 Local Mind Associations, Diverse Minds network, Mindlink network Back

61 Most studies give a lifetime prevalence of 1% for bipolar disorder: Goodwin, F Jamison, K, Manic-Depressive Illness Oxford: OU Press 1990. Most studies show a lifetime prevalence for Schizophrenia of just under 1%: Birchwood, M et al. Schizophrenia - an integrated approach to research and treatment. London: Longman 1988 Back

62 Surveys reveal that most people with mental health issues are keener to be employed than the long-term unemployed with no disabilities (Bates (04/0/96) 'Stuff as Dreams are Made Of' Health Service Journal p33). Working, as evidence of wellness and as achievement of the fully paid up citizen role, is the most commonly used yardstick of recovery. A study conducted by the then DSS found that disabled people prefer working to not working (Rowlingson & Berthoud (1996) Disability, Benefits and Employment, DSS/The Stationery Office; London). Work provides a social identity, meaningful and interesting activity, social contact and financial independence from the state. Back

63 Diffley C (2003) Managing Mental Health Work Foundation & Mind Out; London

24% of people with Mental health problems are in work in England: Labour Force Survey 2003 Back

64 Out At Work (2002) Mental Health Foundation; London Back

65 This has been recognised by the Social Exclusion Unit who are due to published their report into mental health and social exclusion in Spring 2004. Back

66 69% of survey respondents were put off from applying for a job as they thought they would be unfairly treated because of their psychiatric history: Not Just Sticks and Stones (1996) Mind; London Back

67 A Mental Health Foundation survey Out at Work reports that of those who had been open about their mental health issues in the workplace, over half always or often had support when they needed it, with another one in five sometimes getting support. Around two-thirds reported that people at work were always or often very accepting of their situation. Out At Work (2002) Mental Health Foundation; London Back

68 Mind as employer cites its "core hours" policy as an example that improves overall performance for all employees. Back

69 Managing Mental Health (2003) Work Foundation & Mind Out; London Back