The failings of the Work Capability Assessment; who is to blame?

The last two weeks have not seen the best headlines for Atos healthcare, the company that has had the monopoly on delivering the controversial Work Capability Assessments (WCA) since Employment Support Allowance (ESA) came into existence in 2008. First came the news that, following a Department for Work and Pensions (DWP) audit of 400 Atos reports, it was found that 41 per cent of them  were flawed and unacceptable. This was followed by the announcement that from 2014 the DWP would begin inviting bids from other companies to deliver the WCA. Meanwhile, the government has started its fourth independent review into the WCA.

However, would all problems surrounding the WCA be solved if the assessment was delivered in an 'acceptable' manner? Or does the focus on Atos run the risk of ignoring the fundamental problems with the WCA? Given the high success rate of appeals against Atos decisions, and a recent account by an ex-Atos doctor, it would suggest that Atos is the problem. However, organisations, charities, individuals and even parliamentary committees have argued that the real problem lies with the assessment itself, written by the DWP not Atos.

One of the key problems with the assessment’s premise is the focus on the individual’s ability to carry out tasks. At the moment, they measure someone’s ability to complete a particular task in isolation, and they fail to consider the social and environmental barriers to work that people face. For example, the ability to use a keyboard doesn’t mean that you won’t face the barrier of negative attitudes held by employers when trying to find a job. You may be capable of working but unable to do so because of discrimination by employers.

The assessment does include questions about bowel and bladder management, but to receive 15 points (the amount required to qualify for ESA) you must experience at least once a month a loss of bowel or bladder control/substantial leaking from a collecting device. This fails to take into account that many work places will not have accessible bathroom facilities and/or how much distress experiencing such an accident can cause. In addition, this question does not consider that, if you rely on District Nurses for bowel care, it’s unlikely that they will come at a consistent and reliable time which enables you to get to work on time. Disabled people assessed as able to find work should be able to access support to help address the practical barriers they face. However, the majority of support provided comes in the form of attending work focused interviews with people who may not have any knowledge of a disabled person’s impairment. There are also increasing sanctions and mandatory activities being placed on unemployed disabled people assessed as fit for work.

People with Spinal Cord Injury can be subject to the stereotype of being fit and healthy wheelchair users - they may be, they may not be - what is clear is that the Work Capability Assessment (WCA) is not adequate in assessing people’s varying experiences The fact that it has been shown time and time again that there are great failings with the WCA, and yet the government are repeatedly failing to fully address concerns, suggests that not enough priority is being placed on correcting failures. Whether finding alternative providers to Atos will make a difference to the effectiveness of the WCA remains to be seen. Without urgent change on the actual assessment however, the system will continue to fail in meeting the needs of disabled people.  

Nursing care in hospitals

There was a lot of publicity recently around the Keogh Review, which looked into the quality of care and treatment provided by 14 hospital trusts in England with persistently high mortality rates in the last two years. Unusually large death rates do not necessarily mean that the hospitals are poor as there are other factors such as the health profile of a local area that have an impact. Instead, reasons for deaths need to be looked at in detail and the statistics in this act as an alarm sounding that the situation needs to be investigated.

The news headlines were dominated by political punch throwing (not literally!). None of these looked at hospitals that have specialist Spinal Cord Injury Centres, but we looked a bit deeper into the report and were interested in one particular indicator that was analysed in the hospitals; pressure ulcers, more commonly known also as pressure sores.

If you don’t know what one looks like, image search the term pressure ulcer (WARNING! Not for the queasy and faint hearted).

Anyone, including those with full mobility, can get a pressure sore if they stay in one position long enough to place forceful pressure on a particular part of the body. Wheelchair users or those who stay in bed are especially susceptible because they may have difficulty repositioning themselves. It is important that when people are on hospital beds, that nurses are available to move patients regularly. When limited mobility is coupled with impaired sensation, a person is more likely to develop a pressure sore due to the inability to sense when to make a weight shift in order to relieve pressure. People with Spinal Cord Injury have a greater risk of developing one.

It was found that half of the hospital trusts had performance levels outside of the expected range for pressure ulcer care. Another report following a survey from the Florence Nightingale School of Nursing and Midwifery in London found that nurses at NHS hospitals were being overstretched and that they were actually rationing the care that they were providing to patients due to time pressures.  The Keogh report was particularly scathing on the standards of nursing care and staffing levels at these hospitals.

We’ve heard some real horror stories from people with spinal cord injuries who have been to general hospitals. People tell us all the time that the nurses don’t understand how important it is to make sure that spinal cord injured patients change their position regularly. Aspire advises that when people to go to non-specialist Spinal Cord Injury Centres for treatment, that they contact their centre and also ask the hospital they are going to contact their Spinal Cord Injury Centre too. It is important that hospitals receive the specialist guidance they need to ensure that not only pressure sores are prevented, but also bowel and bladder complications do not arise.

Keogh recommended that more work was needed to reduce incidents of pressure ulcers and that there was “poor quality root cause analysis of incidents and limited dissemination of learning from when things go wrong.”

We find this concerning. We would like things not to go wrong in the first place, but when it does, the least we can expect is for it to be investigated so that lessons can be learned from it. The fact that it wasn’t shows people were being failed and arrangements for patient care were not scrutinised.

They can lead to people spending months on bed rest. What’s more, they are preventable and if developed, can also be managed so that they don’t become more severe.

We have spoken with many people who have experienced pressure ulcers at general hospitals. It is not unusual for people to arrive at spinal cord injury centres with pressure ulcers. In terms of patient rehabilitation, this causes further delay and slows down progress.

Having the right mattress and making sure that patients are regularly turned are just two ways in which these pressure ulcers can be prevented.

In our experience, we believe that there needs to be more awareness among staff at general hospitals about pressure ulcers. There needs to be an urgent review into the levels of staffing on wards. Pressure ulcers are easily preventable, but it does require a certain number of staff to be able to ensure this is possible. Cuts in staffing levels not only increase the likelihood of people experiencing pressure ulcers, but the additional time and care required to then manage and heal them will cost the NHS more in the long term. Investing time and money in prevention is in the interest of both patients and the NHS.

- Aspire Campaigns and Research Team

The bedroom tax and disabled people

The 'bedroom tax', or spare room subsidy, has been brought in to try and tackle the rising housing benefits bill and address the issue of overcrowding. The government believes this measure could save the taxpayer £465m per year.

However, research carried out by the National Housing Federation estimates that there are 180,000 households under occupying two bedroom social homes, yet only 85,000 one bedroom properties are available in a given year. This is before considering the 970,000 people on waiting lists for one bed properties.

This would mean that many people would need to move into considerably more expensive privately rented accommodation, with a one bed flat costing an average of £1,500 more per year than a two bed social housing property. The National Housing Federation suggests this could lead to an increase in benefit claims of £143m a year.

Two thirds of those affected by the bedroom tax are disabled people. The government has said that an extra £25m will be available in the form of Discretionary Housing Payments (DHP) to try and address this. However, this would only amount to £2.09 each per week going to those receiving DLA. This problem is compounded by recent research which suggests 3 in 10 disabled people who applied for DHP were turned down. The same research found that of those disabled people refused DHPs "nine out of ten are cutting back on food or bills, nearly four out of ten are cutting back on specialist mobility transport, and more than a quarter are cutting back on medical expenses such as medication, therapies and monitoring health conditions". What’s more, DHP by its very nature is discretionary and is a finite pot of money. No public official has been able to answer our concern about what would happen if the pot runs dry.

Research commissioned by Aspire found that twenty per cent of spinal cord injured people are being placed in care homes after leaving hospital due to a lack of accessible housing. This is problematic on several levels. Firstly, most newly spinal cord injured people are considerably younger than the majority of people that live in care homes. Secondly, the staff in care homes are not used to caring for people with spinal cord injuries and this can lead to health problem and complications. Thirdly, living in a care home often results in a lack of independent living. Under the United Nations Convention on the Rights of Persons with Disabilities CRPD - to which the UK government is a signatory - independent living should be a human right for all disabled people.

Matt has a spinal cord injury and is just one of many people who have been affected by the bedroom tax. Matt had to live in a care home when he first left hospital, with a lack of accessible accommodation in his area leaving him little option but to put up with life in this totally unsuitable environment. After lengthy delays, the council provided him with a purpose built three-bedroom property, with a room for him, one for his live-in personal assistant, and one for his daughter who he has joint custody of. Since his daughter doesn’t live with Matt full time, her room is considered to be ‘under-occupied’ and Matt was told he would now have to pay an extra £668.20 a year. Matt would move to a smaller place, but that’s not possible; the time he spent in a care home was brought about because suitable properties do not exist. And moving back into a care home, a situation that robs people of their independence and would devastate the family relationship, is hardly viable. What makes this situation so perverse is that the council were the ones that provided this three-bedroom property in the first place, recognising that it was the only way to meet Matt’s needs.

Fortunately, this particular story has a happy ending. Matt’s mum, Sue, wasn’t prepared to accept the ruling and from the moment it first came up she has made a point of fighting the decision. Yesterday, she got a letter from the Local Government Ombudsman in response to her complaint, ruling in her favour and therefore ensuring that Matt isn’t liable for the extra payments. She’s delighted with the news, but knows it’s not actually the end of the fight:

“We applied for discretionary funding right from the start, and the council said no. So we appealed and they said no again. So we went to the Ombudsman. If you don’t challenge these decisions, they’ll get away with them. It’s so stupid as they know that to get Matt a two-bedroom place adapted will cost them far more than they’ll get from making him pay this extra amount. But for Matt to pay £12.85 would be a huge drain. We’re not done yet, we’ve still got to challenge the decision to hit him with extra council tax too, and we’ve been told that we’ll probably have to fight the bedroom-tax again next year. But for the time being it feels good. My advice to anyone in a similar decision would be to not just sit back and take it. I know it can be daunting to take the fight on, I know we shouldn’t have to do it, but you can’t let people get away with decisions that have such a big impact on people’s lives.”

So, here we have a policy that purports to be about a better use of public resources, but that was actually threatening to waste the resources that had been used to build Matt a property suitable for him as a disabled person and as a father. And a policy that research suggests is unworkable in any fair sense anyway. No one wants to see public money wasted, and having housing high up on the agenda is something we’re pleased to see. But until disabled people are not penalised – neither because they have specific needs requiring extra rooms, nor because suitable-sized accessible housing is not readily available – then we cannot support the implementation of the bedroom tax. Instead, we encourage everyone who has been unfairly treated to follow Sue’s advice and get those appeals and complaint letters in.

- Rosa Morris, Campaigns and Research

The case for a cumulative impact assessment of Government changes affecting disabled people

This week the House of Commons debated a motion calling for a cumulative impact assessment of the impact of recent changes in policy affecting disabled people. This means reviewing all the ways that disabled people may have been affected by things such as bedroom tax and benefit cuts. The motion was put forward at an Opposition Day debate. On most days when the House is sitting, the Parliamentary agenda is set by the Government of the day. Opposition days allow opposition parties to choose the subject for debate and, on Wednesday, the Labour Party decided to have the following motion:

That this House believes that the Government should publish, by October 2013, a cumulative impact assessment of the changes made by the Government that affect disabled people.

In the last few years there have been a range of changes in policy and law that Aspire believes has had or is due to have a significant impact on the lives of people with Spinal Cord Injury.

These include;

·  The benefit change scrapping Disability Living Allowance (DLA) and replacing it with Personal Independence Payments (PIP) where, from the Government’s own estimations, 500,000 fewer individuals will be in receipt of PIP by 2015/16 compared to what would have happened under DLA.

·  Time limiting of Employment Support Allowance (ESA), where disabled people who receive the contributory benefit and are in the support group of ESA will have their benefit removed if they haven’t found employment in 52 weeks.

·  The scrapping of the Independent Living Fund (ILF). Our own care research found that 14% of all care hours received by people with Spinal Cord Injury are provided through ILF.

·  New under-occupancy changes, better known as the Bedroom Tax, where people will be financially penalised for having rooms deemed spare. This will not take into account couples not able to share rooms because of heavy or noisy machinery, such as ventilators needed for people who have higher level injuries and need breathing assistance,  or space needed to store and use equipment such as standing frames.

·  Cuts to local authorities; with some councils reporting reductions in their budget of up to 40%. A huge chunk of council spending is on social care, so this is bound to affect local social care services.

Equality impact assessments were introduced through the Equality Act 2010 to make sure officials took account of disability, gender and race in their decisions. This has been done for the decisions taken by Government mentioned above. However, the impact of all these changes, all happening at the same time, has not been looked at.

Given that each of these changes do not happen in isolation to individuals, surely we need to take a wider look at the impact of these multiple changes on the lives of disabled people? Aspire believes it makes perfect sense to have a wider stock take of the impact on disabled people in the form of a cumulative impact assessment. 

The motion was not passed by Parliament as it was defeated by a majority of votes from MPs. We are concerned with the outcome as we would have thought that MPs of all parties would find it worthwhile to look at the overall impact of changes that have been introduced. It is important that decision makers know about the whole impact of their decisions and this assessment would have helped to identify if the fears that many people and disabled people’s organisations were having were valid or if things were working well for disabled people and we had nothing to worry about.

Aspire, and I am sure that other groups that work with disabled people, will continue to support the case for a wholesale look at these reforms on disabled people from Government. We will be further raising the matter to MPs and Ministers and would like to encourage you to write to your own MP about this too. If you would like help on how to go about doing this, contact me on 020 8420 6702 or email me on krupesh.hirani@aspire.org.uk

Krupesh Hirani, Policy and Research Officer

Aspire responds to the Spending Round

Wednesday 26^th June saw the announcement of the Government’s Spending Round which outlined their spending plans for 2015/16.

Despite Chancellor George Osborne ruling out any further spending cuts to welfare  before the Spending Round, there were in fact some major policy announcements which could indeed result in cuts.

The planned cap on welfare spending is of particular concern to Aspire as it will include disability related benefits. This could potentially remove the foundations of rights and needs from entitlement and mean support is weighted more on the grounds of cost. This could impact on people with Spinal Cord Injury dramatically.

The additional costs of living with a spinal cord injury can be substantial, ranging from requiring specially adapted transport to needing 24 hour personal assistance.Disability Living Allowance (DLA) was introduced to help with the extra costs of living with an illness or impairment. Its recent replacement, Personal Independence Payment (PIP) aims to continue this. A reduction in the ability to meet the costs associated with Spinal Cord Injury could result in people being increasingly isolated, and experiencing a severe deterioration in their physical and mental health.

Disability benefits are crucial in enabling many spinal cord injured people to return to work following their injury. If the cap leads to fewer people receiving support and being unable to work, this will make it harder for disabled people to become financial contributors to society and the state.

It has been suggested that it’s unlikely that “the government would simply refuse to pay out benefits to which people are entitled" (Channel 4 News analysis) and indeed there are currently no details of how the cap will work in practice. However, if the Government reaches its cap spending level for welfare, there is a danger that entitlements to disability benefits will be tightened and that people who need that crucial support will not receive it.

Another key announcement that is of interest to us included details of plans to increase integration of health and social care and a pledged £3.8bn to do so. On the surface this appears to be very positive and we welcome the recognition by the Government that greater health and social care integration is beneficial. Integrated health and social care aims to prevent a disconnection between the different health and social care support that an individual receives. This is of particular importance for those with spinal cord injuries who can find themselves facing different assessments from health and social care bodies to identify their needs. It can also help with creating new and innovative ways to address people’s needs through councils and health authorities coordinating their resources to take into account someone’s whole lifestyle.

However, over half of this money is coming from the NHS budget, which despite increasing in real terms, is struggling to cope with the huge demands placed on the service. The cuts already imposed on local authorities have placed huge pressure on social care departments at local councils and, unless this changes, the potential of this announcement in the Spending Round will not be realised.  With announcements that local authorities face a further 10% of cuts to their funding, this means that the amount of money councils have to spend on social care will fall even further. This raises the question of just how effective, if at all, this injection of funding will be in reality.

These are only headline announcements and the details and practicalities are yet to be made clear. Aspire will be following developments closely.