Work & Pensions CommitteeWritten evidence submitted by Papworth Trust

About Papworth Trust

1. Papworth Trust is a disability charity and registered social landlord, whose aim is for disabled people to have equality, choice and independence. Papworth Trust helps over 20,000 people every year through a wide range of services including employment, vocational rehabilitation, housing and personal support.

2. Papworth Trust welcomes the opportunity to submit evidence to the Select Committee Inquiry into the migration from Disability Living Allowance (DLA) to Personal Independence Payment (PIP). In anticipation of the inquiry, Papworth Trust ran a survey on the changes to Disability Living Allowance (DLA) throughout August 2011 and received 2,286, 80% of whom (1,829) currently claim DLA. The purpose of the survey was to find out what claimants currently use their DLA for, to test public opinion around the introduction of assessments and re-assessments under PIP, and to better understand what changes (if any) were causing disabled people most anxiety and concern. We have used our survey results to inform this response.

DLA Reform and Implications of a Reduction in Expenditure

3. Papworth Trust is supportive of DLA reform in principle. We favour a simplified system that better reflects the additional costs that disabled people face if they wish to continue to live with the degree of independence which they have chosen. Papworth Trust believes it is important the design of the new PIP to reflects how current claimants of DLA spend their benefit. Our survey found that disabled people tend to spend their DLA on areas such as specialist transport, household goods (including food, drink and basic housekeeping) and utility bills:

“Basically it [DLA] allows me to have a level of dignity and not be scraping around on nothing”.

4. The Government has made clear its ambition to reduce the total amount it spends on this benefit by 20% through these changes, although it has not yet stipulated whether this will be a reduction in the rates of payment, claimant count or a combination of both. Our survey showed that four in five people thought the Government’s target of cutting total spend by 20% was too arbitrary – feeling it implied that either costs associated with having a disability had fallen by 20% or that 20% of claims were fraudulent. By contrast, we found only 5% of respondents felt that having their benefit reduced or stopped altogether under PIP would have no effect. This supports the Government’s view that not everyone who currently receives DLA needs it to maintain their standard of living, but rejects the view that 20% is a fair target.

5. Many of the concerns put forward by respondents for maintaining the current system centred on the feeling that the Government was creating its own catch-22 situation – reducing or cutting entitlement would make their health or condition worse, meaning they would require additional, more costly, support from the state in the longer term.

6. Under our survey, 74% said they would not have enough money for everything they need and 63% said they would be less independent if their benefit was reduced or stopped under PIP. In terms of their spending, the three areas they said they would reduce or cut spending on were household goods like food and drink, utility bills and specialist transport. This is perhaps unsurprising given that for current claimants these are the also the highest three spending areas.

Automatic Entitlements

7. Papworth Trust would like clarification on which claimant groups will be granted indefinite awards. Respondents to our survey felt that periodic re-testing was a waste of resources for those claimants with a long-term disability where it was clear their condition could not improve, particularly for those born with that condition. The Government has indicated that in exceptional circumstances claimants will be granted on-going awards under PIP, but it is not clear what the criteria will look like nor what proportion of claimants are likely to qualify indefinitely.

“My opinion is divided. Re-testing is a good thing for some people, whose condition worsens or develops over time (like my own disability), or for people who may get better over time. For others, who have a chronic, un-changing disability, it would not only be a waste of time, it would cause people stress and worry needlessly”.

Assessments and Re-assessments

8. Papworth Trust’s survey shows the public is split on the issue of assessments and re-assessments. The greatest concern for people about the changes is the fear that the assessment for PIP will be unfair.

9. Disabled people told us they would like to have their say in what period of reassessment was right for them. The Government has rightly recognised that conditions can change over time – for some this will mean their condition will deteriorate and for others they will mean their condition will improve. Whilst longer periods of reassessment, for example every five to ten years, were preferred by many due to the stressful nature of reassessment, others expressed a desire to ensure their assessment periods were shorter as their condition changed more rapidly. Whilst we understand the independent assessor will make a recommendation on how frequently a person should be assessed, Papworth Trust believes there needs to be a role for the claimant and their doctor or healthcare professional to make similar recommendations.

10. The chief concern of respondents expressed that reassessment would automatically lead to a downgrading of the benefit. Further concerns were expressed about the role of assessors and whether they would be able to identify conditions, particularly hidden disabilities, mental ill-health and fluctuating conditions. Respondents felt that only a claimant’s own doctor, consultant or other healthcare professional could properly understand the effect that their condition has on their daily life, and it is therefore imperative that information from these sources is given adequate weighting at the decision-making level. Papworth Trust feels concerns of this nature have been amplified by changes in the Work Capability Assessment to address evident shortcomings in this area.

Passporting Arrangements

11. Through our survey, Papworth Trust found that the most commonly claimed benefits for DLA claimants were the Blue Badge, free bus pass, Council Tax Benefit, Housing Benefit, and Incapacity Benefit. Respondents said it was important that benefits like the Blue Badge were not solely accessible via DLA and should not be so under PIP. We received many responses to say that whilst people were ineligible or yet to receive DLA, their Local Authority was able to grant them a Blue Badge. It was an important part of enabling them to maintain their independence, even without DLA:

“It took me years to get DLA, I was constantly turned down. But having my Blue Badge allowed me to work and go out. If they link PIP and [the] Blue Badge together, I would have lost all of that”.

Aids and Adaptations

12. Papworth Trust welcomes a commitment to continue to award points to individuals who can complete activities only with the assistance of an aid or appliance and that the assessment will only take into account aids or appliances that are normally used by an individual, rather than any that might help them in the future. However, without knowing how the points will be allocated it is difficult to understand if, and how, aids and adaptations will penalise claimants on some descriptors.

13. As the Government is aware, DLA currently acts as a passport for funding for many aids and adaptations, for example social budgets and wheelchair services. We are concerned the situation may arise where claimants receive a lesser PIP award because they are using aids and adaptations, and consequently do not qualify for future funding for this equipment because they do not have the right level of PIP. We ask that this is taken into account and considerations are put in place when developing the new passporting arrangements for PIP.

Funding Overlaps and Mobility Payments to those Living in Residential Care

14. Papworth Trust believes that DLA provided to people in residential care can empower their choice and independence, resulting in greater equality. Research by Mencap does not support the suggestion that mobility support is double-funded. Papworth Trust is concerned that removal of this component from this group of disabled people will stifle the independence of 80,000 people:

“My son is autistic and lives in residential care. One day a week he attends a day centre in Ipswich; using a mixture of taxi’s and public transport, he spends £8.80 each way to get to the centre. In addition to his activities at the centre, he has a voluntary job. By withdrawing the mobility component of Disability Living Allowance to people living in residential care, he will have to live on £22.36 a week”.

15. Papworth Trust believes that the additional expenses incurred by disabled people (for example, the increased cost of an accessible taxi) are equally applicable to those living in residential homes. Just like disabled people who do not live in residential homes, the mobility component of DLA is also necessary to meet other day-to-day expenses. Papworth Trust supports the retention of the mobility component of DLA and PIP for disabled people in residential care.

The Pilot Trials

16. Papworth Trust welcomed the Government’s intention to pilot the new assessment and review the results early on in the process, with opportunities for further revision prior to the regulations being laid in Parliament and the assessment being fully rolled out. However, we were disappointed that volunteers had already been recruited before the publication of the policy papers. Papworth Trust, along with other organisations who have been involved in the consultation groups, would have liked the opportunity to propose volunteers to take part in the pilot. We feel this is a necessary and important part of many organisations’ involvement in the process and would have helped to increase understanding and confidence of how effectively the assessment operates.

17. We are concerned by the decision to recruit volunteers largely from the existing DLA caseload or have had a claim for DLA refused in the past. We feel that this may lead to an under-representation of people with mental ill-health within the pilot study, an issue that has caused problems with other medical assessments including the Work Capability Assessment. Anecdotal evidence from mental health charities suggests that there are a huge number of people not claiming DLA who are eligible. We therefore urge the Government to rectify this in their pilot to ensure that a wider variety of situations and conditions are considered.

Points Allocation

18. Papworth Trust’s comments on the draft assessment are extremely limited given the allocation of points to the proposed criteria have not yet been published. Furthermore, the handbook for assessors, which will explain how they should interpret these descriptors, has not yet been drafted. It is therefore difficult to fully understand the consequences of these descriptors and whether our comments have already been considered by the Department and mitigations put in place.

Designing the New PIP Assessment

19. As mentioned in paragraph 3, our survey found that disabled people tended to spend their DLA on areas such as specialist transport, household goods including food, drink and basic housekeeping and utility bills. Whilst the draft assessment criteria under PIP cover mobility and food drink, they take no account of the additional utility costs faced by disabled people. Previous research carried out by Papworth Trust has shown that severely disabled people find themselves at home for longer periods of the day, and are therefore faced with higher energy bills as a result of heating their home. We have also gathered some anecdotal evidence that some disabled people, as a result of their condition, may take longer to shower, wash or bathe, which further increases utility bills:

“My utility bills are considerably higher than those of able-bodied people e.g. it takes an hour to shower me”.

Papworth Trust urges the Government to take this opportunity to:

revise the draft assessment criteria under PIP and add a new descriptor which reflects additional utility costs faced by disabled people; and/or

provide a passport from PIP to the Winter Fuel Payment to ensure severely disabled people are helped with the additional utility costs they may face.

Daily Living Activities - Food and Drink

20. Papworth Trust’s survey found that half of current claimants spend their DLA on household goods, such as food and drink. We were pleased to note the draft assessment criteria makes important steps to take account of the additional costs faced by disabled people in planning, buying and preparing food and drink. However we are concerned that descriptor 1 places little emphasis on the important of planning and buying food and drink that are appropriate and good for the claimant’s health. Some people may be entirely capable of planning and buying their own food and drink, but they may require additional guidance to make nutritionally sound choices. The descriptor in its current form does not take this into account and we would like to see this emphasised.

21. The descriptor also takes no account of the additional costs associated with “healthy food”. Our survey found that many claimants used their DLA to buy prepared fruit and vegetables as they were unable to prepare these foods themselves. Purchasing such ready-made items are often more expensive than unprepared ones:

“Food and drink = things like ready meals for when I can’t cook, the extra cost of pre-prepared vegetables”.

22. The decision to exclude physical ability to purchase food from the descriptor does not take into account the additional costs a person may face, such as the travel cost of using accessible taxis to and from the supermarket or the expense of having food delivered to their home. These factors are not dealt with under the mobility component of the assessment and Papworth Trust urges the Government to review this immediately.

Mobility Activities

23. Transport is a key issue for disabled people with over half of current claimants spending their DLA on specialist transport to enable them to get around. Our survey also showed that if a person had their entitlement reduced or stopped under PIP, they would in turn cut their spending on specialist transport. Papworth Trust is concerned that the descriptors under Mobility Activities do not currently take into account the additional costs accrued from specialist transport – for example, purchasing mobility cars or taking accessible taxis. In addition to testing an individual’s ability to mobilise, we believe an additional descriptor is needed to take into account social factors such as the lack of an accessible public transport network in the local area:

“I’m a wheelchair user and can’t travel on buses as I have limited strength to support myself etc so therefore always require either accessible taxis or adapted vehicle”.

Interaction with the Work Capability Assessment

24. Papworth Trust has raised concerns about how the PIP assessment could be treated alongside the Work Capability Assessment (WCA). Whilst the contractor for carrying out the medical assessments has not yet been appointed, we can envisage a situation where a claimant is called for their WCA and PIP assessments on the same day, at the same assessment centre with the same assessor. These assessments test completely separate issues and claimants may therefore answer questions in very different ways. We believe careful consideration needs to be given as to how these assessments can be carried out effectively within a short time of each other, or what steps the Government will take to ensure they are kept entirely separate.

25. In addition, Papworth trust is concerned about the speed of the migration. Currently, the WCA migration is falling far short of its target to migrate 11,000 claimants per week. However, there are currently two million working-age claimants of DLA, and only three years have been mooted for migration. This implies a migration of 12,800 claimants per week. Given the experience of the WCA we question whether this is a realistic target. An extended migration period has the additional advantage of providing more time to communicate the changes to disabled people.

26. With regard to contractors, Papworth Trust is concerned that, whichever contractor is chosen, there will be insufficient consequences for the contractor if assessments are delivered late or not at all, or if excessive numbers of assessment results are successfully overturned, for example at appeal. Papworth Trust recommends the contract include penalties for late or cancelled assessments, and for results which are overturned in recognition of the fact that these assessments and appeals are likely to be very stressful for disabled people.

Learning from the WCA Assessments

27. Papworth Trust believes that lessons can be learned from recent reviews, including the Harrington review, on the WCA. Disabled people’s experience of WCA has shown that better upfront support is needed for claimants when filling their forms and especially when they are called for assessment. In the past, notifications for assessment were sent out without warning and no further support is offered to help individuals to prepare for the process. In the design of PIP, consideration must be given to better signpost claimants towards a person or an organisation who can help them understand the benefit itself and the assessment process. It is imperative that information is provided in accessible formats, such as Easy-Read, and is made widely available.

31 August 2011

Prepared 15th February 2012