Response to Disability Living Allowance reform

Consultation body

Scottish Parliament

Response date

February 2011

Focus of consultation

Proposed Disability Living Allowance reform

The proposed Disability Living Allowance reforms impact on those who claim before the age of 65 and those who continue to receive it after reaching 65.

Disability Living Allowance, Attendance Allowance and associated benefits such as Carers Allowance and disability premiums and additions payable in Pension Credit, Income Support, Employment and Support Allowance as well as housing and council tax benefit and other benefits, are essential sources of income towards meeting the additional costs of living with dementia and are key benefits that allow people with dementia to live as independently as possible within the limits of the illness.

Alzheimer Scotland recognises that Disability Living Allowance requires reform to make it simpler, easier and cost effective to administer and also easier to understand. While, the concept of Personal Independence Payments designed to promote independence is welcome, the proposed cuts of 20 per cent reduction in the budget will result in severe financial hardship for a substantial number of very severely disabled people. Previous governments, in the belief that DLA was being overpaid to many claimants, have sought to reduce spending on Disability Living Allowance DLA. The Benefits Integrity Project of the 1990’s, and subsequent system of Periodical Review have failed to prove that. Evaluation of the Benefits Integrity Project failed to take account of the numbers of people who had benefit reinstated on appeal.

Alzheimer Scotland is well aware of the pressures on public spending as a result of the current economic crisis. However, we do not the support the proposed cuts to the budget for Disability Living Allowance. The cuts undermine the principles of promoting independence for people with dementia and other forms of disability.

Along with cuts in health and social care spending, the reduction in income from Disability Living Allowance and related benefits will have severe and lasting impact on many thousands of people living with dementia, or other disability, in Scotland and the rest of the UK. This will compound levels of poverty among disabled people leading to a loss of independence and social exclusion. Reform of DLA should be based on improving outcomes and experience for people living with disability and not reducing expenditure by cutting the scope of the Personal Independence Payments with narrower and stricter entitlement criteria.

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

Attitudes to dementia, stigma, lack of awareness among the public, providers of services, employers as well as health and social care professionals about the nature of dementia and how it impacts on people with dementia, their carers and their families are major barriers. Almost two in every three people with dementia do not receive a diagnosis.

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

Alzheimer Scotland welcomes the decision that the Personal Independence Payment will remain non contributory, non taxable and non means tested. DLA is currently disregarded as income for the purpose of calculating entitlement to means tested benefits. It is essential that this continues under the proposed Personal Independence Payments. Any change to include Personal Independence Payments as income in calculating entitlement to means tested benefits would result in severe financial hardship for a substantial number of disabled people and would undermine the principles of introducing a benefit intended to promote independence.

What are the main extra costs that disabled people face?

People with dementia face significant extra costs just to maintain the same standard of living as people living without a disability. Loss of income from employment, little or no opportunity for employment, paying for aids or adaptations, charges for social care, increased fuel, laundry, transport, and non prescription medical costs are among some of the additional costs faced by people with dementia.

Dementia is a physical illness of the brain, however, the needs of people with dementia are generally seen as social care as opposed to health care which is generally free at the point of delivery. Social care is not free and people with dementia are charged for social care services through local authority non residential care charging policies. DLA is paid to people who claim before reaching the age of 65. Free Personal Care is only available to those aged 65 or over in Scotland.

The new benefit will have two rates for each component:

• Will having two rates per component make the benefit easier to understand and administer, while ensuring appropriate levels of support?
• What, if any, disadvantages or problems could having two rates per component cause?

Alzheimer Scotland is concerned about the proposal to have only two rates of payment in the daily living component of the Personal Independence Payment. This effectively removes entitlement for those who might currently be entitled to the lower rate care component. This component provides a modest but important source of financial support to people who have significant needs. Removing this payment is contrary to other initiatives designed to provide preventative support to promote independence and delay the need for more intensive, and expensive, support needs. It also fails to take account of the additional costs of living with a disability and the financial help needed to tackle the social exclusion of those who live with a disability.

Should some health conditions or impairments mean an automatic entitlement to the benefit, or should all claims be based on the needs and circumstances of the individual applying?

Yes. Some types of severe disability and illness, including some types of degenerating conditions which have a severe impact on the ability of an individual to manage activities for daily living without human or technological help. For people with such severe disability or illness the process of claiming should include automatic entitlement without requirement for unnecessary and stressful, periodic reviews.

How do we prioritise support to those people least able to live full and active lives? Which activities are most essential for everyday life?

Any activity that enables an individual to participate in his/her community is essential. People with dementia often need prompted, encouraged and reminded, or physical assistance, to carry out daily living activities.

How can we best ensure that the new assessment appropriately takes account of variable and fluctuating conditions?

The proposal to introduce Personal Independence Payments includes a new objective assessment process. This can only work if the health care professional is making decisions based on truly objective criteria and who have a full understanding of dementia. Alzheimer Scotland recommends that those carrying out assessments have experience of working with people with dementia.

Should the assessment of a disabled person’s ability take into account any aids and adaptations they use?
What aids and adaptations should be included

• Should the assessment only take into account aids and adaptations where the person already has them or should we consider those that the person might be eligible for and can easily obtain?

Alzheimer Scotland does not agree that more account should be taken of aids and adaptations in the assessment. Aids and adaptations are an indication of the level the level of help required by a disabled person to carry out a particular task. DLA is paid to people who need attention, from another person, in connection with bodily functions. An aid simply replaces the help that another person provides it does not remove the need. An individual may have aids or adaptations that help them manage better at home, however, when away from home the person may need the help of another person, in absence of the aids or adaptations they use at home, to manage daily living activities.

Taking more account of aids and adaptations will mean that those people who have aids or adaptations that help them live at home may not qualify for Personal Independence Payments. Again this will lead exclude many severely disabled people from qualifying.

How could we improve the process of applying for the benefit for individuals and make it a more positive experience? For example:

• How could we make the claim form easier to fill in?
• How can we improve information about the new benefit so that people are clear about what it is for and who is likely to qualify?

The qualifying conditions for Personal Independence Payments must be clearer and easy to understand. The current claim form for DLA does not explain the tests and claimants are unsure what the questions are asking. The process is also negative asking about what an individual cannot do or has difficulty doing.

What supporting evidence will help provide a clear assessment of ability and who is best placed to provide this?

It is essential that evidence for those who know the claimant best is considered. Along side the evidence of the individual the carer or family member should have an opportunity to provide valuable first hand evidence. Too often this is disregarded as biased. The evidence of supporting services, perhaps voluntary organisations can also be invaluable.

An important part of the new process is likely to be a face-to-face discussion with a healthcare professional.

• What benefits or difficulties might this bring?
• Are there any circumstances in which it may be inappropriate to require a face-to-face meeting with a healthcare professional – either in an individual’s own home or another location?

Health care professionals carrying out this role should have experience of working with people with dementia or a full understanding of dementia and how it affects an individual in all aspects of his/her life.

The process of making a claim must not put people off claiming. The role of the health professional will be crucial in ensuring that there are no additional barriers to making a claim. For many people with dementia a face to face meeting at home or other agreed place where they feel comfortable will be appropriate. It is also essential that a person with dementia can request to have someone with them during any assessment.

How should the reviews be carried out? For example:

• What evidence and/or criteria should be used to set the frequency of reviews?
• Should there be different types of review depending on the needs of the individual and their impairment/condition?

Dementia is a progressive illness. A review should only be set if lower rate is awarded and entitlement is likely to increase in future. If higher rate awarded the award should be indefinite as needs will only increase.

The system for Personal Independence Payment will be easier for individuals to understand, so we expect people to be able to identify and report changes in their needs. However, we know that some people do not currently keep the Department informed. How can we encourage people to report changes in circumstances?

Make the process simple. Provide one point contact where all changes in circumstances can be reported by the person, their appointee, attorney, carer or family member, or representative in a range of ways such as telephone, mail, email or online webpage etc.

What types of advice and information are people applying for Personal Independence Payment likely to need and would it be helpful to provide this as part of the benefit claiming process?

Help to complete the claim form and information about where to get help. The Pensions Disability and Carers Service provide excellent help with Attendance Allowance claims. There is an opportunity to learn from and develop that experience.

How important or useful has DLA been at getting disabled people access to other services or entitlements? Are there things we can do to improve these passporting arrangements?

DLA is a key benefit that provides access to a wide range of financial and other help to people with dementia and their carers. These including possible help from means tested benefits, carers allowance, council tax discounts and exemptions, blue badge schemes, motability scheme etc.

Entitlement to the Personal Independence Payment should carry the same access to such help. The DWP needs to be more proactive in ensuring that claimants are assisted to access any further benefit entitlement triggered by an award of Personal Independence Payment.

What would be the implications for disabled people and service providers if it was not possible for Personal Independence Payment to be used as a passport to other benefits and services?

The implications would be to increase financial hardship, increase poverty for people living with disability and a loss of independence. Given the name Personal Independence Payments

What different assessments for disability benefits or services could be combined and what information about the disabled person could be shared to minimise bureaucracy and duplication?

Assuming consent of the claimant, attorney or guardian then it may be helpful to combine assessments with community carer assessments.

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