Personal Independence Payment: initial draft of assessment regulations Disability Benefits Consortium comments

June 2011

The Disability Benefits Consortium (DBC) is a national coalition of over 50 charities and other organisations committed to working towards a fair benefits system.[1] Using our combined knowledge, experience and direct contact with disabled individuals, people with long-term conditions and carers, we seek to ensure that government policy reflects and meets the needs of all disabled people.

1. Introduction

We welcome the opportunity to feedback on the draft criteria before testing this summer. We hope that our proposed changes can be incorporated into the assessment before the testing begins.

However we believe that the publication of draft regulations just one day prior to discussion in the Welfare Reform Bill Committee stage limited the opportunity for a full discussion in Parliament. We feel that this adds strength to our call for affirmative rather than negative resolution procedure for the regulations, to allow for full and proper Parliamentary scrutiny of the plans for the new PIP assessment.

2. Period Condition

The regulations include the intention to extend the qualification period for PIP from the three months currently applied to Disability Living Allowance to six months. We remain concerned that this extension will push many disabled people into debt and place an extra burden on both individuals and families.

PIP is intended to provide cash help to support disabled people to lead full, active and independent lives by supporting them with the additional costs they experience as a consequence of their impairment or health condition. Making people wait longer will place further burdens on those adjusting to sudden onset conditions such as stroke, or people who experience the immediate debilitating effects of treatment such as cancer, as well as penalising those whose impairment or condition has gradually worsened over a period of time and have already had to deal with additional costs prior to passing the threshold for PIP. To require additional costs to exist for six months before offering any financial assistance will push even more disabled people into debt. This could also mean that no-one with severe depression receives DLA, as depression usually lasts for six months at a time and people then experience relapses for similar lengths of time. During this period they could face substantially higher costs, e.g. transport for loved ones to accompany them or high phone bills due to increased number of calls to friends and family for support or to support lines.

The briefing notes suggest that “where disability-related costs do arise early on, for instance as a result of having to make frequent hospital visits for treatment, additional support mechanisms provide an element of coverage before the qualifying period is satisfied”. However, these suggested alternative sources of funding are not available for all disabled people eligible for PIP. Many are means-tested or available only to those out of work. In the case of hospital car parking, there are large variations in charges levied across Trusts and concessionary rates (where they do exist) are often not advertised as well as they should be.[2]Doubling the qualifying period to six months will therefore leave many disabled people without any source of financial support to help with the additional costs they face.

The Government has expressed a desire to align the qualification period for PIP with the one year definition of disability included in the Equality Act. We propose that this instead be achieved through maintaining the qualification period of three months but extending the period of future need from six to nine months. However, exemptions would be needed to ensure groups with serious conditions such as cancer are not excluded from PIP, and to ensure that people with long-term and fluctuating conditions who may struggle to satisfy the period conditions are not penalised.

3. Draft Criteria

A more holistic, multidimensional approach to assessing the additional costs and barriers to participation experienced by disabled people would be far better than the tick box methodology that has been proposed. However, given the Government’s preference for this approach, we have developed our own alternative criteria which we believe would assess the wider range of activities necessary to lead an independent life and provide a more accurate measure of the additional costs faced by disabled people, which we will be submitting to the DWP shortly as an Appendix (DBC briefing alternative PIP criteria[3]). We also wish to comment on some broad concerns regarding the DWP’s proposed assessment, as well as the detail of the proposed descriptors.

3.1 General comments

The Minister has stated several times that the Government is committed to PIP supporting participation and enabling disabled people to lead independent lives, and that the new benefit will be about promoting independence and social inclusion.[4]

However, we are concerned that the draft criteria focus only on those activities required for the bare essentials of existing and will fail to help disabled people overcome the barriers many face to living independently and participating fully in society. The proposed descriptors seem to address a much narrower range of issues than DLA currently does. For example, the current DLA asks about things you would like to do and support you would need for that, including the ability to engage in a reasonable amount of social activities.

Example: Person with Ulcerative Colitis:

“I very rarely go out socially. I might have been throughout the year, one or twice, you know. Christmas time, but other than that, no. Myfriends just don’t understand and think I’m making excuses – the social isolation is one of the worst things about living with Ulcerative Colitis.”

While we welcome the Government’s commitment to developing an objective assessment, we are still concerned that it remains very much a medical test with “a strong focus on care and mobility” as well as “the impact of a health condition or impairment on an individual’s ability to participate”. The technical note on the draft criteria states that the Government has attempted to identify proxies for an individual’s ability to participate in everyday life, and asserts: “We believe that the most effective means of determining entitlement is to assess proxies for the impact of a health condition or impairment on individuals, including additional costs arising from disability.”

However, the proxies chosen continue to focus on care and support needs, rather than the additional costs encountered by disabled people in everyday living. There are repeated references to whether someone can undertake an activity without assistance or prompting. In opposition to the Government’s justification for the introduction of the benefit, therefore, the criteria seem to be designed around the medical model of disability, rather than the social model. They look predominantly at the medical impact of an individual’s impairment rather than how this interacts with society to create barriers to independence.

We do not believe that measuring any single factor, such as the need for support in basic functional tasks, is an accurate proxy by which to calculate the cost drivers of living with an impairment or health condition, as shown by the recent research by Scope and the think tank Demos. We strongly recommend strongly that wider social and environmental factors must be included within the assessment, to ensure that it accurately measures the additional disability costs which present barriers to participation. Examples include the high costs of heating, water or other utilities, transport, telephone costs, delivery costs, clothing, bedding or other aids and adaptations, and prescriptions and other complementary therapies. We are deeply concerned that, without factoring in these issues, many disabled people – particularly those who have high disability costs but who may be assessed as having low impact of impairment – will not get the support they need and could be pushed deeper into poverty.

Alternatively, accounting for key social and environmental drivers of a disabled person’s disability costs could pave the way for a more sustainable solution to reducing these costs and addressing disability poverty over the long term. An assessment that flags up social factors – like costs incurred from living in unsuitable, inappropriate housing, for example – would highlight areas where extra support from statutory and non-statutory services would be greatly beneficial. For example: an individual who is assessed as having high disability costs as result of living in poorly adapted and unsuitable housing may have their information passed on to the best appropriate housing services, which could then look into ways of making the necessary adjustments to reduce these extra costs and make their accommodation more suitable – and thereby reducing their disability-related costs in this area.

Finally, while we appreciate the Department’s concerns about developing a more multidimensional test that is too complex and expensive to administer we would suggest that there are lessons to be learnt from social care assessments, which are used widely and successfully throughout the sector.

Points

The draft assessment provides no indication of the points award for each of the criteria. Without these it is impossible to ascertain the thresholds being proposed for PIP at the standard and enhanced rate.

We welcome the Government's intention to trial PIP, and engage in further consultation, producing a second draft of regulations in October. However, PIP clauses in the Welfare Reform Bill were debated in Committee on the basis of regulations which make it far from clear as to who will, in future, qualify for the benefit, and therefore what the impact will be on disabled people. The lack of information on scoring makes it particularly difficult to comment on the draft criteria and effectively engage with the consultation.

Fluctuating conditions

There is nothing in the criteria (or in the regulations) that would act as a prompt to ensure that individuals must be able to undertake an activity repeatedly, reliably and safely, despite this being mentioned in the accompanying information. Evidence collected from the Work Capability Assessment demonstrates that such considerations are not taken properly into account if not on the “face” of the test.

For example, an individual must be able to do more than cook one simple meal – they need to be able to cook at least three simple meals per day. Someone whose condition fluctuates may be able to cook a meal for breakfast, but find that they struggle with cooking evening meals due to fatigue. We therefore recommend that the wording of ‘repeatedly, reliably and safely and without significant pain, fatigue or distress’ should be included expressly within each descriptor.

Accompanying guidance should explain what is meant by ‘repeatedly’ in the context of each activity (such as cooking at least three simple meals throughout the day, managing their medication throughout the day at appropriate intervals and frequency for their condition, and washing and bathing as frequently as necessary – someone with continence problems for example may need to wash and change on a frequent basis throughout the day, or someone with Crohn’s or Colitis may need frequent help throughout the day with their toilet needs.)

We believe that, in order to fairly and accurately assess the impact of a fluctuating condition, the applicant needs to be asked about the frequency, severity and duration of their condition. It may be that such a measure is tagged onto the assessment as a separate descriptor or it could be integrated into the descriptors themselves.

Moreover, someone who can’t undertake an activity for, say, 3 months per year is still living with significant disability. We would like to know what the Government’s evidential justification is for choosing 6 months, and would recommend that consideration should be given to awarding some lower level of points to people with a long term condition who experiences significant difficulties for some of the time (for example 3 months of the year).

Finally, the overuse of the word “continual” in the PIP criteria gives the impression that someone would have to be in continual contact with the person, not just for the activity. The way DLA is worded appears much better in relation to the amount of time you might need or the frequency of assistance/prompting you need. The use of ‘continual assistance’ or ‘continual prompting’ versus ‘intermittent assistance or prompting’ will be difficult to interpret and apply, and fails to understand the reality of the support that people need.

For example, someone with a visual impairment may be able to follow a journey relatively independently, but require assistance with pedestrian crossings, hazards or unpredictable incidents. So any amount of necessary assistance should be considered “continual”. Similarly, someone may only require assistance getting in or out of a bath or shower in order to wash or bathe, or supervision in case of falling, rather than continuous assistance throughout the process, but would nevertheless need to pay for a carer’s presence for the whole time of bathing.

The definition of ‘prompting’ should also be widened to include other forms of communication such as telephone or e-mail rather than simply the physical presence of a person. This would be more conducive to promoting independence while still taking into account situations where carers, family and friends may prompt people to eat or bathe, or assist with planning shopping lists and budgeting using other means of communication.

Sensory impairments

The DBC is concerned that the draft assessment fails to accurately address the needs of people with sensory impairments (hearing, visual and dual sensory impairments).

At the moment the impact of sensory impairments is specifically recognised in primary and secondary legislation on DLA and we are concerned that by failing to specifically address sensory needs in the new PIP assessment many people with a sensory impairment will be denied the support they need.

In addition, it is important that ‘intermittent/ continuous assistance’ are interpreted broadly to cover the support that people with sensory impairments may need, including, for example, reading cooking instructions when preparing a meal, or locating toilet facilities and orienting themselves in a bathroom or cubicle in order to manage toilet needs etc.

The draft assessment also makes assumptions around an individual’s adaptation to their condition. In many cases, the reality will be that as people are taught independent mobility skills and build their confidence, their costs will go up, as they seek to participate in the community, and therefore travel around more. Likewise, whilst people with hearing loss may attain communication skills, they cannot be considered as evidence of the individual adapting to their condition if they cannot use these skills to communicate effectively with other people reliably and repeatedly.

In June 2010, celebrating extension of the higher rate mobility component to severely sight impaired people, Maria Miller said "The Coalition Government is committed to making sure that help gets to the people who need it. We've taken steps today to extend the higher rate mobility component of Disability Living Allowance to severely visually impaired people from next April. This will mean that around 22,000 people will get an additional £30.90 a week, giving them greater independence in their everyday work and home life." It seems illogical that just a year after this announcement a new assessment is being proposed that risks denying the same group of people the support they need.

Aids and adaptations

We welcome a commitment to recognise that those who rely on aids and adaptations nevertheless face barriers, by awardingsome points to individuals who can complete activities only with the assistance of an aid or appliance in some activities.

We welcome also that the assessment will only take into account aids or appliances that are normally used by an individual, rather than any that might potentially help them.We note also that the presence of an aid or adaptation does not imply its usefulness. For instance, some people with hearing aids may only gain a small benefit from them and, in the case of people with tinnitus, the use of the hearing aid to counter hearing loss may exacerbate the tinnitus.

However, it is important that those who have significant reliance on aids and adaptations, such as a wheelchair, still obtain enough points to qualify for PIP, in recognition of the limitations and extra costs that such reliance may bring.. We are particularly concerned that the barriers created by reliance on mobility aids, such as a wheelchair, are not adequately recognised in the current draft of the assessment for the mobility component (please note our concerns on specific descriptors, below). In addition, clarification is still needed on when an appliance replaces or provides a cognitive function such as memory through an electronic reminder device, and when these will be taken into account, for example in managing medication (activity 4).