Important consultation on a replacement for ESA

ESA needs replacing; there is little disagreement about that. What has not yet been proposed is a system to replace it. Such a system should be designed primarily by the sick and disabled people who will depend upon it.

This is what Ekklesia is proposing to do. In its initial survey, Ekklesia asked respondents about what support they needed in order to be able to work (if work were possible at all) and how the assessment process should occur. The results of this survey have been published in two reports. The first focusses on the support that sick and disabled people say that they need if they are to be able to work. The second report presents a proposal for a new assessment and support process, again based upon the responses to the survey. But there is more work to do.

Ekklesia are asking people to respond to their initial proposal with comments and critique. Their second report is also a consultation document, asking for responses to the proposed system and principles. Twelve weeks have been given to respond to this consultation, which is running from 9th August to 31st October 2016. Ekklesia are particularly keen for responses from people with sensory impairments, spinal or limb injuries, learning disabilities and autism spectrum disorders as these groups were under-represented in the initial survey. However, chronic physical and mental illness continue to be central to the design of a suitable assessment process, especially given their traditional under-assessment in income-replacement and extra-cost benefits.

You can find the first report here, and the second (consultation) report here. The second report is also available in an Easy Read version here. You can respond to the report by emailing your response to ekklesiasurvey@gmail.com or by posting it to Ekklesia Survey c/o Simon Barrow 3/3 Kirk St, Edinburgh, EH6 5EX.
If you prefer, for simplicity, you can answer the consultation questions using a scale of Strongly Disagree / Disagree / Neither Agree nor Disagree / Agree / Strongly Agree.

The report by Ekklesia shows that the government is badly failing its sick and disabled citizens. The government claimed that the Incapacity Benefit system abandoned disabled people to a life on benefits. Yet we are far more abandoned by ESA. Under IB we were given the freedom to live and manage their lives; on ESA WRAG or JSA we are mandated to activities beyond our capabilities without the support we would need to be able to undertake them.

Without this support, any attempts to get us into work are simply doomed to fail. It is a waste of the government’s resources to put money into a scheme that cannot work, and a waste of our health, energy and capacity for social inclusion. The government cannot have it both ways; it cannot refuse to pay the cost of employment support and simultaneously insist that we ‘prepare for’ work that we will never find.

The principles that Ekklesia propose allows the government to make the choice of whether to fully support someone to work, or to support them in a life of independence and social inclusion outside of the workplace. By basing the decision upon what support is needed for an individual to work, we ensure that the decision on capacity for work is tied in to both what support an employer can provide, and what the government is providing. We end the farcical situation where individuals are told by the DWP’s mechanistic system that they are fit for work, when the assessor and employment support worker know that the individual is demonstrably unfit for work. And we ensure that no-one is asked to work before the government has made it possible for them to do so.

Based on the results from the respondents to Ekklesia’s survey, Ekklesia have proposed, as a starting point for this consultation, that a new assessment process should include the following features:

  • Medical evidence should be provided for all individuals; this is a more efficient way to get an accurate medical opinion than having to employ medics who are not involved in the individual’s care.
  • The assessment should be in the format of a discussion taking place over several meetings.
  • Claimants should have the opportunity to comment on the assessor’s report before a decision is made.
  • The assessor should also be the one who makes the decision on fitness for work.
  • Reassessment need only occur for those not in regular contact with a caseworker, and should be light-touch in recognition that these are the people who are least likely to become fit for work.

The criteria of fitness for work should be based on the following:

  • The decision of capacity for work should include labour market competitiveness.
  • The assessment should consider the overall capacity for work, including the need to work at a slower pace or have breaks from work, rather than focussing on isolated activities.
  • The assessment should give direct consideration to the skills that the individual has and whether or not these can be used given the claimant’s health condition.
  • A decision of fit for work should be based upon the ability to identify jobs that that individual could perform.
  • If an individual needs particular forms of support to be able to work, that individual is considered unfit for work unless and until that support is provided.

The underlying policy position, principles and assumptions should recognise that:

  • Individuals contribute to society in a number of ways other than paid work, and the value of these contributions should be recognised.
  • The social security system needs to protect those whose health and quality of life is at risk of being damaged by requirements to engage in work or work-related activity.
  • Voluntary work should be encouraged as a valuable contribution to society and as an acceptable activity for people with chronic illness who claim sickness benefits.
  • The basic rate of benefit should be set at a level that is adequate for long-term living including social participation in society.
  • Sanctions and conditionality are detrimental to health, well-being and financial security. They should not be used for people with chronic illness. Instead, a system of top-ups (above a liveable base-level benefit) could be acceptable to compensate individuals for engagement in activity.
  • A range of areas not well captured by the WCA are key to the understanding and assessment of capacity for work. These include mental health, varying or unpredictable capacity for work, and the accumulation of incapacity from multiple origins.
  • Capacity for work is impacted by the provision of support in areas of life outside of the individual workplace. These can include health care, personal assistance, home help, caring responsibilities, commuting and regulation of the labour market to promote more and better quality jobs.
  • People with chronic illness need a wide range of support if they are to be able to work.
  • People with chronic illness may benefit from re-training, particularly where re-training may allow the individual to use remaining health capacity better or compensate for loss of capacity in a previously trained area.
  • Employers may be reluctant to employ people with chronic illness due to founded or unfounded concerns of associated costs. Employers may need practical advice, support and/or financial assistance to make it viable for them to take on an employee where the any associated costs are uncertain.
  • There is a mismatch between what employers mean and can manage when they refer to flexible working, and what people with chronic illness mean and need when they refer to flexible working.
  • There is a difference between an individual being ‘capable’ of work (which could include working for small units of time at irregular intervals, spread out over a longer period), and an individual being employable or being able to find or sustain work.

 

You can find the first report here, and the second (consultation) report here. You can respond to the report by emailing your response to ekklesiasurvey@gmail.com or by posting it to Ekklesia Survey c/o Simon Barrow 3/3 Kirk St, Edinburgh, EH6 5EX.
If you prefer, for simplicity, you can answer the consultation questions using a scale of Strongly Disagree / Disagree / Neither Agree nor Disagree / Agree / Strongly Agree.
The consultation is running from 9th August to 31st October 2016.

Action on PIP 20m rule

Have you been affected by the 20m rule in PIP?  Lost your higher rate mobility in a transfer from DLA to PIP? Lost your motability vehicle?

Has this affected your ability to leave your home to get to places, and take part in community, volunteering or work? Do you think your mobility needs were unfairly assessed in a PIP assessment?

Thanks to a recent House of Lords motion by Baronness Thomas of Winchester, there’s a chance to make the government rethink the notorious “20 metre” rule for qualifying for the Enhanced Rate Mobility component of Personal Independence Payments (PIP).

We need case studies of people affected by this 20m rule for DWP officials* to examine its fairness and its impact on people’s lives. Please note, you must be willing to disclose your National Insurance number, so that details of your case can be looked into. Please write to Baronness Thomas at thomascm@parliament.uk

The 20m rule, not included in the original consultation on PIP, restricts eligibility for the mobility component for people with severe walking difficulties from the previous 50m benchmark used in DLA down to 20m.

There is no evidence that people who can walk more than 20m but less than 50m face lower costs for mobility and transport than those who cannot walk 20m. This aspect of PIP means disabled people who would have qualified for the Higher Rate mobility component under DLA lose £33.25 per week or access to their Motability vehicle.

The House of Lords motion – April 2016

Baroness Thomas of Winchester: to move to resolve that this House calls on Her Majesty’s Government to hold urgent talks with Disability Rights UK and the Disability Benefits Consortium to identify a mobility criterion in the Personal Independence Payment “moving around” assessment which is fairer than the current 20 metre distance, in the light of the impact on reassessed disabled claimants and the resulting large number of successful appeals.

Please write to Baronness Thomas, with details of your case and your NI number if you can help, at thomascm@parliament.uk

Thanks, from the Spartacus team.

*Update 18.06.16 Apologies for the previous error in the post, which read “Dept of Health” officials.

 

Spartacus responds to PIP spending cuts

Earlier this year the Spartacus Network published Crippling Choices, a response to the government’s consultation on Personal Independence Payments. The report rejected all its proposed changes to the way aids and appliances are scored in PIP.

Out of 281 responses to the DWP’s consultation, only 11 were in favour of the changes.

But the government has gone ahead with its proposals anyway. The changes will mean that over 600,000 people who need help with dressing and using the bathroom will lose a portion or all of their benefit. Spending on PIP will have been slashed by £1.2 billion by 2020.

Although the mainstream media has reported the cuts to PIP, few have sought to challenge the DWP’s justification for the changes to the scoring of aids and appliances. The consultation claimed that the kinds of equipment that assists people in some activities like dressing and bathing are low cost and easily available and therefore shouldn’t be covered by a PIP award.

Emma Nock, co-author of Crippling Choices says reports of the PIP cuts miss a crucial point:

“The PIP assessment covers a small number of activities which act as a proxy for all the difficulties a disabled person may be facing. This is why it was so important to maintain the points scored for the use of aids and appliances. A person who needs an aid to dress themselves or use the toilet is not restricted in those activities only. For example, a person who needs to sit down while dressing likely has balance, mobility or strength issues that limit their capacity to engage in other household activities. They may struggle to lift a load of wet laundry out of the washing machine or to move around the kitchen while cooking and cleaning up afterwards. Neither of these activities are considered in the PIP assessment.

Again, the person who needs an aid to toilet effectively may be needing a support to stand up. They would also be unable to lift a load of wet laundry, if they can’t lift their own bodyweight without help. I would suspect they may also have difficulties using a vacuum cleaner, another activity that is not assessed in PIP. Alternatively, perhaps the person is using a long-handled aid to wipe themselves? Even with the aid, this person has limited mobility which may mean they are not able to wipe themselves effectively, meaning they have to change and wash their clothes frequently, leading to higher laundry bills. This person probably also can’t change a light-bulb, and so if they don’t have family nearby or friendly neighbours, will have to pay for someone to change the light-bulb for them.

These are just a few, small examples of where difficulties in the assessed activity demonstrate difficulties in unassessed areas of life. This is how PIP was set up to work, and so to reduce the points awarded for the assessed activities without giving new consideration to the unassessed activities is flawed.

The initial review commissioned by the DWP said only that PIP “may not be working as planned” and should be looked into, not that PIP was definitely not working or definitely did need tightening. The subsequent small-scale study by the DWP has not been published (an FoI request revealed it had not been written up into a report; the only information available on it is the otherwise unsupported conclusion given in the DWP’s consultation document) and has been challenged by disability researchers.

In a survey conducted by SpartacusNetwork, many additional cost and difficulties were identified by respondents as being likely to be present for the two illustrative examples given by DWP. This strongly suggests that the DWP’s belief that the use of these aids indicates minimal extra costs is incorrect. The aid may be cheap, or already present in the house. That isn’t the point. The point is that the person needs an aid in that activity, and that activity was chosen as representing other areas where difficulty is experienced. The person’s bed doesn’t follow them around to be ready whenever they are undertaking an activity that requires them to sit down or have somewhere safe to fall.”

Crippling Choices

Spartacus Network report rejects the government’s proposed changes to PIP

 

Read the report and send it to your MP

Thank you to everyone who responded to our survey. We asked what your thoughts were about the Government’s proposed changes to the way the use of aids and appliances are scored in PIP assessments. You almost unanimously rejected all of the DWP’s 5 options, each of which would substantially reduce eligibility to PIP for disabled people who need aids and appliances in their daily life and deny them the vital support to live with dignity and choice.
Crippling Choices argues that the use of aids and appliances was introduced to PIP assessments as evidence of functional limitations, not for covering the cost of specific aids or appliances, therefore the DWP’s issue of whether an aid is low cost or commonly used is irrelevant.
Needing to use an aid or appliance in at least four out of ten selective activities of daily living demonstrates an overall functional limitation that causes significant costs. The DWP should not be seeking to reduce the pay-out to people who qualify in this manner.
PIP has been deliberately designed to rely on ten specific activities as a proxy for all areas of disability-related cost (except for getting around outside the home). Some people with significant costs in areas not assessed by PIP may only qualify for PIP on the aids and appliances rules; it is vital to keep these in in order to ensure that they continue to act as a proxy measure for these other areas.
The report also criticises the quality of the government’s consultation on PIP reform to aids and appliances. Among other failings, it argues that the DWP has not provided any adequate or robust evidence that people receiving PIP on the basis of aids and appliances do not have any further costs. The DWP cites a review, but does not provide copies of this review. This is a major failing as respondents cannot comment on the adequacy of the methods used and the interpretation of the results.

Hold the government to account

In 2010 the Coalition Government promised that:
“Personal Independence Payment will remain an extra-costs benefit, providing cash support and allowing disabled people to spend the benefit in the way which best meets their individual needs.”
DWP Disability Living Allowance reform December 2010
We must hold the current government to account on PIP. The replacement of DLA with PIP was already controversial for its planned 20% cut in expenditure and for reducing support to people with substantial mobility difficulties via the “20metre rule”. Now, after only two years of partial take up there is a suggestion of reform to further reduce eligibility and expenditure and to undermine the personal budget principles it was designed on.
Please write to your MP. Use this blog post as a letter template, add your own concerns and send them a copy of the Crippling Choices report
Thank you.

PIP eligibility cut? Have your say

Personal Independence Payments Aids and Appliances consultation – take the Spartacus survey

The government has launched a consultation to change the way in which aids and appliances are considered in PIP.

All the options that DWP is asking us to consider involve reducing the numbers of people eligible for PIP and for passported benefits like Carers Allowance.

In its consultation document the DWP suggests scoring system should be changed for using aids or appliances that are low in cost and commonly used.

Here is the example they give of a person who currently scores points for needing aids and appliances, but who should not be awarded any points because he has few or no ongoing costs:

61 year old man with chronic obstructive pulmonary disease. He cannot stand for long due to fatigue and breathlessness. He can help his wife prepare food, providing he sits down. He sits on a seat in the shower and holds the sink for support when using the toilet. He also sits to get dressed, which takes a long time due to breathlessness, and wears easy to pull on clothes. Low daily living extra costs reflect one-off costs for aids such as a perching stool. He already has a shower seat and grab rail, as his wife needs them, and other aids are unlikely to be of much benefit.

Do you agree?

Please tell us what you think about the proposed changes to the way aids and appliances are considered in PIP through this survey. The survey will close on Friday 8th January.

More information on the proposed changes

Currently, the need to use an aid or appliance to manage an activity in the Daily Living component receives two points. As the Standard Rate requires eight points, a person can receive PIP Daily Living by needing aids and appliances on four of the ten activities.

The government is concerned that 35% of people awarded PIP Daily Living receive it solely on the basis of the need for aids and appliances in four or more areas. The government considers that in many cases points are inappropriately awarded for items that are low cost, common in all households or only used out of choice rather than necessity.

The DWP give five possible options for change, which are as follows:

1 A lump sum paid to claimants who score all their daily living points from aids and appliances. This could be discretionary and its use limited through the use of vouchers. The awards could be periodic, in order to cover the cost of replacing aids or appliances. It would not passport to other benefits or premiums and would not exempt claimants from the benefits cap. Claimants scoring at least some points from other descriptors would be paid at the relevant weekly rate, as now.

2 A lower monthly payment for claimants who score all their daily living points from aids and appliances. It would not passport to other benefits or premiums and would not exempt claimants from the benefits cap. Claimants scoring at least some points from other descriptors would be paid at the relevant weekly rate, as now.

3 A new condition of entitlement that claimants must score some points from a descriptor that does not relate to aids and appliances. Claimants scoring at least some points from other descriptors would be paid at the relevant weekly rate, as now.

4 A change to the definition of aids and appliances to exclude any that the DWP does not consider are a good indicator of additional cost and need. Claimants who use aids and appliances that are a good indicator of extra costs would be paid at the relevant weekly rate, as now.

5 Halving the number of points that can be scored for the use of aids or appliances from 2 to 1 for some or all daily living activities.

Here’s the link to our survey  https://www.surveymonkey.co.uk/r/5JVQG7Y

How would cuts to Employment and Support Allowance affect you?

URGENT – YOUR VIEWS ON CUTS TO ESA IN THE WELFARE REFORM BILL NEEDED BY 15TH NOVEMBER

Spartacus produced a briefing when the Chancellor announced his plans this summer to cut £30 per week from the benefits of people in the ESA Work Related Activity Group in order to incentivise them to return to work.

We said that cutting social security for disabled people would place the UK government in breach of its international treaty obligations under the International Covenant on Economic, Social and Cultural Rights as well as the UN Convention on the Rights of Disabled People. What’s more, this plan is based on the false assumption that people in the WRAG have motivational problems, rather than health or labour market barriers.

Now we welcome a parliamentary review led by Lord Low of Dalston in December to give evidence on how these proposed cuts will affect disabled people and their families. A group of disability charities including Mind, MS Society, National Autistic Society, RNIB, Royal Mencap Society and Scope wants to collect your views on this issue if you receive ESA and would be affected by a cut of £30 a week.

Please help them produce a report to submit to this review. Below is the Disability Benefits Consortium’s consultation questions (you can read more here). Please send your response to Natalie.armitage@mencap.org.uk using the subject line ‘Review of reduction to ESA WRAG payment’.

Getting the views of disabled people and their families

We want to hear from you if you are currently in the ESA WRAG and would like you to tell us about what it would mean if you had around £30 less a week to live on. You might want to tell us about your experiences of living day-to-day when you were waiting for your work capability assessment, for example.

We also want to find out about the current effectiveness of support within the ESA-WRAG for disabled people undertaking ‘work related activity’ such as training or support to look for work. Getting this right is important so that those people who can work have the opportunity to do so.

Please answer the below questions. Your answers will be incorporated into the final report. We would like to include quotes in the final report. If you would prefer to remain anonymous then please let us know.

Questions

  1. Tell us about the support you receive from being in ESA WRAG. For example, you can tell us about how you spend the money you receive and/or the support that is offered to you to help you move towards employment.
  1. What would be the impact on your daily life if you did not have this payment of almost £30 per week? Please feel free to draw on your experience of receiving less money when you were waiting for your assessment for ESA (the work capability assessment).
  1. Would there be an impact on your ability to look for work if the amount of money was reduced? What do you think this impact, if any, would be?
  1. How ready for work do you consider yourself to be? Would further support help you to feel ready for work if you do not feel so already? What types of support, if any, would be helpful to you?

Please send your response to Natalie.armitage@mencap.org.uk using the subject line ‘Review of reduction to ESA WRAG payment’.

The consultation will be open until 15 November 2015, midnight.

ESA Myths

Are people in the ESA WRAG nearly fit for work?
The message we often hear from politicians and the media is that people in the ESA “Work Related Activity Group” have only minor ailments or temporary health conditions and therefore could work now or in the near future if they made more effort. The implication is that being in the ESA WRAG is a lifestyle choice.
It’s time to dispel this myth and tell the truth about people in the WRAG. Here are 3 profiles of claimants who would be placed in the WRAG in a Work Capability Assessment.
Do these people have the choice to go out and get a job?
Mike, 40, suffered a stroke two years ago while at working as an engineer which left him with brain injury and epilepsy that his specialist says are unlikely to improve further. Under the Work Capability Assessment he scores points for loss of consciousness due to seizure 2 -3 times a month (6 points); inability to initiate or complete personal action for the majority of time (9 points) and occasionally uncontrollable episodes of aggressive behaviour (9 points).
Mike scores 24 points but doesn’t quality for the Support Group.

Alan, 29 has autism and lives with his parents. Alan enjoys his supported voluntary work in a community farm but he has never been in paid work. Alan has a reduced awareness of hazard which puts him at significant risk of injury to himself or others requiring frequent supervision (9 points). He can’t cope with minor planned changes to his daily routine (9 points). He can’t get around, even to a familiar place without another person to accompany him (9 points) and he experiences significant distress from social contact with an unfamiliar person (9 points)

Alan scores 36 points but doesn’t qualify for the Support Group.

Sheila was diagnosed with multiple sclerosis eight years ago. She carried on working as a sales rep until her symptoms became too severe as the disease progressed. Sheila can’t walk more than 100m due to muscle weakness and balance problems (9 points), (she can’t self-propel a wheelchair because of upper body weakness). She has difficulty controlling her bladder meaning she often needs a change of clothing (6 points). Her co-ordination difficulties mean she can no longer use a keyboard effectively (9 points). Sheila experiences cognitive dysfunction and depression, which has worsened since had to give up work, and as a result she frequently can’t initiate and complete at least 2 personal actions (6 points).
Sheila scores 30 points but doesn’t qualify for the Support Group.

Mike, Alan and Sheila are not real people, but illustrations of how the WCA measures illness, disability and fitness for “work related activity” in a way that has no bearing on either medical reality, or the real world of work. Without financial support to overcome the significant obstacles they face, and without employers prepared to tailor their job conditions considerably, real people like Mike Alan and Sheila don’t have realistic job prospects, now or in the future.

The current work preparation schemes for people in the WRAG provide almost no specialist support for people wanting to move towards work.

These profiles show you can score well over the necessary 15 points in the WCA and still be placed in the WRAG. The WCA takes no account of how multiple symptoms or difficulties decrease someone’s chances of working.

Adapted from the Spartacus ESA Mythbuster by Catherine Hale, Caroline Richardson and Stef Benstead, with contributions from Jane Young and Sam Barnett-Cormack