Migration to ESA

ESA 29

Written evidence submitted by Muscular Dystrophy Campaign

Introduction

1. The Muscular Dystrophy Campaign represents the 71,000 people in the UK with muscular dystrophy or a related neuromuscular condition. There are more than 60 different types of muscular dystrophy and related neuromuscular conditions, many of which are low incidence, orphan conditions and indeed some are very rare and are regarded as ultra orphan. Neuromuscular conditions can be genetic or acquired and, with the exception of a couple of acquired conditions, there are no known effective treatments or cures.

2. We endorse the recommendations to improve the Work Capability Assessment (WCA), following the independent review carried out by Professor Malcolm Harrington. We are very concerned that the WCA could make it harder for people with neuromuscular conditions to claim the Employment and Support Allowance (ESA) to which they are entitled. Furthermore, we are very concerned that the changes implemented as a result of the internal review could make the process even more difficult for people with neuromuscular conditions. We believe that further consideration should be given to the structure of the WCA before full-scale migration from Incapacity Benefit begins.

3. While the government estimated that 49 percent of people undergoing the WCA would be refused ESA, placed on Jobseeker's Allowance and expected to find work, in fact the actual figure is 69 percent. It is also estimated that one in three ESA are appealed, and that 40 percent of these appeals are successful [1] .

4. We agree with Professor Harrington that: "the WCA is not working as well as it should" [2] and support his call that greater weight should be given to evidence provided by medical professionals experienced in the particular condition affecting the person undertaking the assessment.

Professor Harrington’s review of the WCA

5. During Professor Harrington's review, we had shared our concern that people with serious neuromuscular conditions are being incorrectly assessed as being fit for work, as a result of a flawed assessment system carried out by health professionals with little or no experience with rare neuromuscular conditions. Many GPs may only see one patient in their whole career affected by a neuromuscular condition, and it is therefore unlikely that the Atos Healthcare professionals (who are contracted by the Department for Work and Pensions to carry out the WCA) will have experience in these conditions.

6. The lack of knowledge about neuromuscular conditions is highlighted in the Department for Work and Pension’s Disability Handbook, which is produced by the Department’s Health and Benefits Division with help from experts involved in patient care for Disability Living Allowance and Attendance Allowance Decision Makers. The section on muscular dystrophy comes under child conditions and contains a number of very serious inaccuracies about neuromuscular conditions. For example, the section on Becker muscular dystrophy categorically states that the condition does not affect the heart. This is simply incorrect – cardiomyopathy is a very serious complication of Becker muscular dystrophy. Furthermore the Handbook incorrectly describes the severity of muscle disease, providing misleading information for assessors, and needs to be revised and corrected as a matter of urgency.

7. Given that this is the type of information is also provided to the healthcare professionals carrying out the WCA, we are likely to see incorrect decisions being made. We therefore welcome the recommendation that greater weight is given to evidence provided by medical professionals, in particular neuromuscular care advisors, who have expertise in rare conditions so that the assessor can fully understand the impact of these complex, multi-system disorders on a claimant's capacity for work.

The challenges of getting work for people with neuromuscular conditions

8. The WCA currently fails to take into consideration real-life context - it does not measure the availability of accessible and appropriate work, only functionality for theoretical jobs, and does not recognise that for many disabled people who are able to work, it can be almost impossible to find, obtain and retain employment, due to inaccessible workplaces, transport and employer attitudes.

9. The Muscular Dystrophy Campaign’s Trailblazers Young Campaigners Network is a group of young people with neuromuscular conditions campaigning for social inclusion for people with disabilities. As their report, Right to Work, reveals, there is a severe lack of appropriate employment opportunities for people with disabilities, who also face a poor understanding of disability among employers.

· Three quarters of Trailblazers think the job application process puts disabled people at a disadvantage

· 70 per cent of Trailblazers believe their job applications have been rejected because of how employers view their disability

· Three quarters of Trailblazers feel physical access to the workplace is a major barrier to finding a job

· One in seven disabled graduates (average age 26) says they have never been in paid employment.

Trailblazer 1 is a member of the Muscular Dystrophy Campaign’s Trailblazers network, a group of young people aged between 16 – 30 who fight against the social injustices experienced by young people living with muscle disease or a related condition. Trailblazer 1 is 25 and lives in Lancashire. He has Spinal Muscular Atrophy.

"One of my biggest worries was the financial side of things. I have good days and I have bad days with my health, which is why I needed to try and find a part-time placement with a certain level of flexibility. I have spinal muscular atrophy and things get harder and harder. The problem is that once you've been taken off Incapacity Benefit there is a six-month period before you can get it again. So if things got difficult and I leave an employer, it's extremely difficult to get another job and impossible to get back onto the same income replacement benefit. It's a "Catch 22" situation. You want to work but the employer can't deal with disability, so you lose your job and you can't go back on disability benefits."

10. Whilst we welcome the intention of ESA to support those who can work to find employment, the evidence above demonstrates that significant barriers to finding a job continue to exist for people with neuromuscular conditions. Professor Harrington has recommended that further research should be carried out to "understand whether the assessment could and should incorporate more ‘real world' or workfocused elements." We support this recommendation, but urge the Government to carry out this research as a matter of urgency.

Trailblazers 2 and 3 explain some of the difficulties they have experienced when looking for work.

Trailblazer 2 from Edinburgh:

"In effect, employers are able to discriminate on the grounds of disability with a justifiable cause. This would not be the case on the grounds of race, gender or sexuality. But they are excused on the grounds of disability. The law has no teeth to actually encourage the appointment of new disabled employees, but the DDA is a welcome step if you were to become disabled whilst at work."

Trailblazer 3 from Birmingham:

"I sent in a prospective CV (in which I did not disclose my disability) to a company, and received a phone call a few weeks later. I was asked to come in for an interview, but when I enquired about wheelchair access the person said they would find out and call back, but never did!"

11. The changes recently made to the WCA as a result of the internal review have led to significant simplification of the descriptors which make them less able to identify the barriers an individual may face in finding work.

12. For example, the internal review of the WCA argued that "individuals who use a wheelchair to mobilise, if working in a fully accessible area, are therefore not limited in their capability for some types of work" [3] . This fails to take into account that many workplaces are not accessible to wheelchair users and some smaller firms will not be required to make reasonable adjustments to make their workplaces accessible.

13. In addition, public transport is often inaccessible to wheelchair users, further limiting the number of jobs available to them. In the End of the Line report, Trailblazers found, for example, that in one in three bus journeys and one in four train journeys they were unable to board the first vehicle to arrive due to factors such as a lack of staff or space for disabled passengers. On the London Underground, only 22% of stations are accessible to all wheelchair users, and of these only 1.5% (or four) of accessible stations are in Zone 1 (central London). The WCA is meant to identify ways in which a person’s impairment may impact on work opportunities. Whilst using a wheelchair does not prevent someone from working, as these examples show, it does significantly limit the work options available and the assessment needs to reflect this.

Conclusion

14. As we set out above, we have serious concerns about the current ability of the WCA to accurately assess an individual’s capability for work. The Atos healthcare professionals carrying out the assessment are very unlikely to have details, or any, knowledge of neuromuscular conditions and the WCA itself fails to take into account the significant barriers people with disabilities face in finding and retaining employment.

15. With these concerns in mind, we believe that the time-scale for beginning the migration from Incapacity Benefit is too fast. We recommend that the Government take time to review the current WCA more fully and implement Professor Harrington’s recommendations before moving forward. Without taking this time to reflect, many people are likely to be inaccurately assessed and placed on the wrong benefit, placing additional strain on the already over-stretched Tribunal system.

April 2011


[1] Department for Work and Pensions (25 January 2011) Employment and Support Allowance: Work Capability Assessment by Health Condition and Functional Impairment: Official Statistics . Available from: http://research.dwp.gov.uk/asd/workingage/esa_wca/esa_wca_25012011.pdf

[2] Professor Malcolm Harrington (November 2010) An Independent Review of the Work Capability Assessment . Available from: http://www.dwp.gov.uk/docs/wca-review-2010.pdf

[3] DWP (2009) Work Capability Assessment Internal Review www.dwp.gov.uk/docs/work-capability-assessment-review.pdf , p . 18