The worries of disabled people

It is probably fair to say that most ordinary people are totally confused about what the Westminster Government is trying to achieve with its biggest shake-up to the welfare benefits system since World War II. As a membership based organisation representing 4,000 people living with MS in Wales, even we have found it difficult to keep up with the debates and the detail of the proposed changes in the Welfare Reform Bill (some of the key issues are explained here.)

Nonetheless, we are extremely concerned about the proposal to impose a one-year time limit on how long someone in the Work Related Activity Group can claim contributory Employment and Support Allowance. This policy is expected to impact on around 700,000 people across the UK, with about 8,000 with MS affected. We have five major concerns:

• The 12 month time-limit is completely arbitrary. No evidence has been cited to suggest that one year is a reasonable amount of time in which to expect an individual in the Work Related Activity Group to find a job, in fact 9 in 10 people in the group currently require support for over a year.

• The policy does not protect the poorest. After 12 months, if a claimant’s partner is earning as little as £150 per week, or working 24 hours per week, they will not be eligible for income-related Employment and Support Allowance and will lose their benefit.

• The policy does not protect the most disabled: While those in the Support Group of will get the benefit indefinitely, people in the Work Related Activity Group still face significant barriers to work. We believe that high levels of people with conditions like MS are being wrongly placed in the Work Related Activity Group by an assessment system that the Department of Work and Pensions has accepted is flawed. Nearly 50 per cent of people with MS who receive Employment and Support Allowance are placed into the Work Related Activity Group.

• The policy of time-limiting contributory Employment and Support Allowance hits only those people who have worked and paid into the system until they were no longer able to due to illness or disability, and it penalises those who have made efforts to save, or who have a partner who continues to work.

• This policy will not incentivise people with disabilities to stay in work for as long as possible and save for the future; it will not incentivise partners to remain in work instead of leaving to care full time, and we are concerned that it could ultimately result in family breakdown.

While we recognise the UK Government’s imperative to make savings and reduce the current deficit, the commitment has also been made to protect the most vulnerable. The current policy fails to strike the right balance between these two aims and will leave many very vulnerable people without vital support.

Mary from Bangor – a case study Mary worked full time for 36 years, 25 of them with MS. Her condition has become much worse in the last couple of years, and she experiences numbness, pins and needles, stiffness and pain in her arms and legs, fatigue, and confusion. She says: “Some days I’m as stiff as a board – I couldn’t even get down stairs to get to work. I was just a wreck really. So I had to pack it in. If I could’ve gone back to my job I would have. I just feel totally washed out. I’m aching all the time and I can be awake a lot of the night with the pain. But the work capacity assessment was horrendous, just dreadful. They don’t seem to understand about the pain and fatigue.” Mary was put into the Work Related Activity Group on contributory Employment and Support Allowance and recently received a letter to say that this benefit will stop in April. Her husband works in a low-paid job. She says: “You’re made to feel awful when you’ve always worked, and paid National Insurance for so many years and been very careful. We’ve worked hard to build up a few savings – which we might need to pay for care. It just seems so unfair that when you’re genuinely ill that you’ll get nothing. We feel like we may as well just spend the lot so we’ll have nothing – then we’ll get the support we need from the UK Government.”

We will have to wait the outcome of the ‘parliamentary ping-pong’ to see what the eventual legislation will look like and how it will ultimately affect people living with MS. Ultimately much of the detail will be in the regulations and like many voluntary sector groups we will see to influence this process.

People living with MS share the same concerns and anxiety about the economy and the UK’s finances. They share many of the views expressed in the tabloids and appalled by what they see as people abusing the system and creating a distrust of genuinely disabled people, who need vital services.

However, they are worried that proposals to simplify the system and tackle benefit fraud may impact negatively on people living with fluctuating conditions such as MS. We are already seeing people negatively reassessed because their full care needs have not been identified by the assessor.

Most people living with MS would love nothing more but to go back to work, and for those who can, we hope that there will be new support coming from the eventual Act and regulations. However there will continue to be a large group of people who can not work due to their condition, and we will fight any moves to deprive this vulnerable group of the benefits that should be rightfully theirs.