CONSULTATION ON THE REPLACEMENT OF DISABILITY LIVING ALLOWANCE WITH PERSONAL INDEPENDENCE PAYMENT

  1. Capability Scotland works with disabled people of all ages and their families and carers throughout Scotland to provide a broad range of flexible, personalised education, care and health services. We are also a campaigning organisation, committed to using the influence we have to ensure disabled people achieve the same human and civil rights as the rest of society.
  2. Capability Scotland is a member of the ScottishCampaign on Welfare Reform. As such we believe that for an adequate welfare state it is necessary to:

-Increase benefit rates to a level where no one is left in poverty and all have sufficient income to lead a dignified life

-Make respect for human rights and dignity the cornerstone of a new approach to welfare

-Radically simplify the welfare system

-Invest in the support needed to enable everyone to participate fully in society

-Make welfare benefits in Scotland, suitable for Scotland

  1. Capability Scotland welcomes the opportunity to respond to this consultation.

General Comments

  1. Capability Scotland is strongly against the proposed changes. We believe that they will undermine the abilityof hundreds of thousands of disabled people to live independently and to enjoy the samefreedom, choice, dignity and control as other citizens at home, at work and in the community. The changes will do this by reducing the income of many disabled people and by making their support conditional and restricted. This is not in-keeping with the UK Government’s apparent commitment to disability equality, human rights and independent living.
  1. The UK Government has stated that the objective of the proposals is to make the benefits system simpler and fairer for disabled people. However, the proposals were accompanied with an announcement that they would reduce the amount spent and case load by 20% within 3 years of implementation[1]. We do not believe that any such reform, which will create new barriers to inclusion and participation in society, can be described as fair.
  2. The consultation states that the proposals take account and show commitment to the social model of disability. This is certainly not reflected in the proposals themselves, particularly in relation to the proposal that all claimants should have to go through an independent medical assessment (rather than self assessment) before they can claim Personal Independence Payments. This is a medical model approach rather than a social model approach. The Government also states that these reforms will support many people to live independently. However, many of the proposals undermine the ability of disabled people to live independently and to exercise freedom, choice and control. For instance;

-Removing DLA/PIP from people living in residential care will deprive thousands of freedom of movement and control over their own lives

-Making PIP dependent on conditions such as seeking help and support from alternate sources thereby undermining their right to choose

-Prioritising those who are least able to complete everyday tasks rather than making DLA available to disabled people who face extra costs as a result of their disability.

We are therefore not only strongly against the proposals but we are also unhappy that the Government’s inaccurate use of terminology developed by the independent living and disabled peoples’ movements. We do not believe the Government should use this language to justify reforms that will potentially undermine much of the progress achieved by the movement to date.

  1. We would also like to express our concern in relation to the stated rationale for the reforms i.e. to focus support on those with greatest needs. While we are not opposed to the idea that those most in need should be considered as a priority, it is critically important to distinguish between the purpose of other means-tested benefits and the intended purpose of DLA. DLA is an allowance (not a benefit) intended to help meet the extra costs of living independently. In this sense, defining “need” only in terms of “essential activity” is to disregard the concept and principles of independent living, individual choices and indeed human rights more generally. This objective radically alters the function of DLA and, given the intended purpose of DLA, the argument that it is somehow progressive to redistribute in favour of those most in need of support to “function” is flawed.
  1. We are also concerned that the Government has overstated the problem of fraudulent DLA claims, both in the consultation paper and in its political discourse more generally. This negative rhetoric is then reflected by the media and the public and can result in further discrimination and prejudice against people with disabilities. The Department of Work and Pensions own statistics cite the overall fraud rate for Disability Living Allowance as being less than 0.5%, compared to the 0.8% of official error the DWP themselves admit to making[2]. This is clearly where the Government’s criticism and improvement should be focused.
  1. We also believe that, if implemented, the changes would undermine UK Government policy commitments, such as the pledge to achieve disability equality by 2025 and the elimination of child poverty. As such, we call upon the UK Government to withdraw these proposals.
  2. We would also like to highlight that the consultation period has given inadequate time for a comprehensive response, particularly in relation to such an important issue, and shows little consideration of the additional needs of disabled people in responding to consultations.
  3. We also feel that the consultation questions to not properly highlight or invite feedback on critical elements of the proposed changes. For example, there are no questions about the removal of mobility component of DLA for people in residential care or the introduction of a six month eligibility period. We will therefore address these issues before answering the specific questions posed.

Mobility Component for Individuals in Residential Care

  1. We are strongly opposed to the mobility component of PIP being denied to those living in residential care. By removing this entitlement the Government is essentially removing all independence from this group, many of whom rely on the payment to visit family and friends, pursue hobbies or attend medical appointments. The proposed reform appears to be based on the assumption that people in residential care are completely institutionalised and disinterested in living independently. The comparison that the Government has made between people living in residential care homes and people who are in hospital is misguided, offensive to residents and based upon the incorrect presumption that being disabled is the same as being ill.
  1. Many of Capability Scotland’s service users would be put in an extremely difficult situation by the enforcement of this proposal. Indeed, the sister of one of our service users described how the changes would affect her brother. She said, “Despite all his problems, my brother is outgoing and sociable. He thrives on company and loves getting out of the residential home and into the community – just as he would have before his injury. His outings can include shopping, going to the bank, concerts and shows, talks on outdoor activities, and supported swimming classes. He has joined a local head injury groupand takes part in their meetings and events. He also has to go into town for medical appointments. The UK government’s proposed changes would turn the home into a prison for him and lead, as previously stated, to boredom, frustration, depression and potential aggression – a permanent state of cabin fever.”
  2. Another of ourservice users commented, “If my DLA mobility allowance was stopped this would have a very bad effect on my life. I rely on my car to access the shops and community. I am a wheelchair user and, due to the rural location of the service I live in, it would be very difficult for me to visit my friends and do my daily shopping without my car. I attend users’ groups for the Care Commission and sit on the board of the Scottish Consortium for Learning Disability, this is very important to me because I feel involved in issues relating to my life.”[See Appendix 1 below for more information on the effect this change would have on Capability service users].
  1. Capability staff who work in residential care homes are also largely against the changes. One commented, “Without disability related benefits, many people in residential care homes would have only their small weekly personal allowance (approx £28) to cover the cost of clothes, toiletries, pocket money items. Without disability related benefits, they would be unable to afford to go out and take part in activities in the community – essential for so many if they are to retain any independence and have any enjoyment of life. Does the UK Government not realise how many younger people are in residential care homes? Do they want residents to become ‘prisoners’ with no life outwith the home? It’s like a return to Victorian times.”

  1. The changes could also have a huge impact on local authorities and the providers of residential care, many of whom rely on residents’ DLA to subsidise transport costs. Research has found that,contrary to UK Government claims, local authorities do not tend to fundmobility costs for disabled people in care homes as part of contractual fees. It also found that half of disabled people who live in residential care give either the majority or their entire DLA mobility component to their care home. Of these, 40% said that it pays for a Motability car, and 21% said the money goes towards petrol for staff to take them out. This suggests that much of the burden of the cuts will fall on local authorities[3].
  1. We are concerned that these reforms will constitute a breach of the Human Rights Act 1998. The changes will deny thousands of disabled people equal access to private and family life as theywill be unable to afford contact with their spouses, parents, children and friends. Those who can no longer afford to attend their place of worship will be denied their right to religious freedom.

Six month qualification period for PIP

  1. Capability also believes that the qualification period for PIP should not be raised from 3 to 6 months. It is essential that anyone who becomes disabled should be enabled to remain as independent as possible. This support should be given as soon as possible. From the time a person becomes disabled they should be enabled and encouraged to access the wider community and lead as fulfilling a life as possible. Otherwise there is a danger of people becoming trapped in the confines of their home and losing hope and confidence. Furthermore, six months is also a long time to survive financially with all the extra costs that can come from having a disability. There is a real risk that many claimants will already be in debt by the time their claim is processed.
  1. Service users have highlighted to us that – in reality – it can take years rather than months to access DLA due to the complexity of the process and any subsequent appeals.

Impact on Scottish Budgets

  1. A reduction in income for many disabled people as a result of these changes could have a knock on effect on other budgets (many of them Scottish). Examples include:
  • A 20% reduction in disability benefits will result in thousands of people struggling to live independently. This may result in stress and mental health problems, or the deterioration of physical health. Some claimants may also turn to local authorities for the help they would otherwise have paid for with the DLA. This will result in greater reliance and a greater financial burden on local health and social care services and potentially an increase in the number of people living in residential care homes. This will be particularly problematic in Scotland which has more disabled people per head than other parts of the UK.
  • The extra burden on local authorities will be felt disproportionately in Scotland. This is becausein Scotland, many local authorities take disability benefits – such as the care component of DLA - into account when they are calculating what it is reasonable to charge someone for non-residential care. Many local authorities also fail to deduct disability related expenditure from the individual’s available income. As DLA is reduced, so will the available income of service users and, in turn the amount that local authorities are able to charge for care packages. This will not be the case to the same extent in England, where the Department of Health has issued guidance on fair charging of disabled people . While we are against DLA subsidising local authority budgets, it should be acknowledged that reductions in disability benefits may have a disproportionate impact on local services north of the border.
  • According to the consultation document, eligibility for the mobility component ofPersonal Independence Payments (PIP) would be judged on a person’s ability to get around generally, rather than on their ability to walk. For instance, claimants might be asked whether they are able to plan and make a journey. The UK Government would also take into account the claimant’s ability to get around using a wheelchair and/or other aids and adaptations. Wheelchairs, aids and adaptations are funded by Scottish budgets (such as local authorities and the NHS wheelchair service). The mobility component of DLA is often used to informally subsidise publically provided wheelchairs, aids and adaptations. If DLA (or its equivalent) is removed from 20% of claimants, it is conceivable that the burden will fall on local authority and NHS services to fill this gap.
  • As noted above, the mobility component of DLA for individuals in residential care is often used by care providers to subsidise transport costs for residents (e.g. to run minibuses). If this money is withdrawn it is highly likely that this will result in a financial burden being placed on care providers and local authorities.
  1. Furthermore, while the Government claims that the reforms will result in savings, they will also lead to huge costs in other areas. We are keen to see the Government’s costingsfor implementing the new benefit.Costs might include, for instance:
  • The cost of employing independent medical assessors
  • The administrative cost of dealing with the high rates of appeal which are likely to result from independent assessments
  • The unnecessary cost of reviewing and assessing people who have lifelong, unchangeable conditions and/or disabilities
  • The cost of the decreased economic contribution from disabled people and carers as they are prevented from overcoming barriers to employment, education and social inclusion.

Specific Questions

What are the problems or barriers that prevent disabled people participating in society and leading independent, full and active lives?

  1. The barriers that prevent disabled people from participating in society include barriers toeducation and employment, unequal access to healthcare, the inaccessibility of the physical and built environment, communication barriers, prejudicial attitudes and discrimination. However, it must be remembered that in many cases the barriers faced by disabled people are either caused by or result in their financial exclusion. This is why DLA is invaluable to so many people.
  1. Currently, households which include someone with a disability are threetimes less likely to earn over £40,000 than other households. Furthermore, 49% of households including someone with a long-standing illness, health problem or disability have net annual incomes below £15,000.[4]Disparities of this kind are likely to increase as a result of the current economic climate. Indeed, a recent poll found that two thirds of parents who have a disabled child are finding it more difficult to pay their bills than they were a year ago. This compares to only 45% of other parents[5].
  1. DLA has done much to overcome this disadvantage and put disabled people on an equal footing with the rest of the population. Removal of disability benefits from those who require them to live independently will clearly in prevent disabled people participating in society and leading full and active lives.

Is there anything else about Disability Living Allowance (DLA) that should stay the same?

  1. We would urge the Government to retain self-assessment in relation to DLA/PIP. Although we acknowledge that the current system is imperfect we believe that small changes could result in a vast improvement of the process. The explanation of the “need” for reform refers to the fact that “the process is based on unclear criteria and often does not make the best use of available evidence. As a result, awards can be subjective, inconsistent and do not always focus support on those who need it most. Disabled people also tell us that the DLA claim forms are too long and can be difficult to understand. We believe that the existing assessment for DLA is therefore no longer fit for purpose”.We suggest that the solution to these problems is that: clear criteria are developed; that the current assessment process is developed to make best use of available evidence and that the application process is simplified.
  2. We also believe that the purpose of DLA should be to cover the additional costs that arise as a result of a person’s disability, thereby allowing them to live independently. Eligibility should not be based on a person’s ability to complete ”everyday essential tasks”but rather on whether they require extra income to live independently and cover the added cost of their disability.

What are the main extra costs that disabled people face?