In July the Government presented a Green Paper to Parliament entitled ‘Shaping the Future of Care’. In it they set out proposals for reform of the care and support system and how the money could be found to pay for it. As a user led organisation we broadly welcome the proposed reforms to the funding of the care and support system, recognising it as a bold attempt to solve the care funding crisis. We are however gravely concerned about proposals to shift money paid to people in the form of the Attendance Allowance to the social care system, and the lack of concrete measures to tackle the lack of support for disabled people. (see Appendix 1)
Note: We believe that where disabled people need services to enable them to live independently, these should be provided as a right, not as a favour, or at an added cost. What is happening is a breach of the rights of the most vulnerable people in our society.
Attendance Allowance is a non-means tested state benefit payable to people 65 or over who have personal care or supervision needs. Entitlement is decided upon the level and frequency of the care and/or supervision that is needed. It is payable at a lower rate of £47.10 per week or a higher rate of £70.35 per week.
As this is a “Green Paper” it is not clear what the ‘new offer’ will be, but there is a strong implication that Attendance Allowance could be replaced with another form of funding.
The report says that ‘people currently receiving the affected benefits at the time of reform would continue to receive an equivalent level of support and protection’. However, in using the words ‘disability benefits’ the Government has created fear amongst many disabled people that the proposals may extend to the care component of Disability Living Allowance. Although the Government has given an assurance that DLA is not under threat there are many in the charity sector and amongst claimants who fear this could be the next step.
Note: We support disability living allowance (DLA) and AA as national, non-means tested benefits paid directly to disabled people to meet their higher living costs. The Disability Alliance have undertaken research and provided evidence on the higher costs of living that disabled people experience. DLA and AA were intended to help with the higher costs of living that disabled people and their family’s experience, and to help tackle the link between disability and poverty. We believe placing either or both of these funds in the pool for Local Authority distribution could cut support and restrict choice and control for many disabled people. This would make a farce of the previous white papers and government documents that promote greater user control of services. Papers such as ‘Independence, Well-Being and Choice’, ‘Our Health, Our Care, Our Say’, and ‘Improving the Life Chances of Disabled People’ give high aspirations for social care services, which we are rightly in agreement with, and we seek to see implemented. But the gap between the rhetoric of these papers and the reality of social care rationing is growing ever more acute.
There are some proposals that are welcomed. These include the formation of a National Care Service that could end the “postcode lottery” of care and the commitment that everyone would receive some support from Government. However, much is left unsaid in the Green Paper and there are fears that the results of the changes outlined could have substantial consequences for those entitled to benefits.
Among CiLK’s concerns are:
Attendance Allowance (AA) and Disability Living Allowance (DLA) use care needs (and in the case of DLA, mobility needs) as indicators of the extent of someone’s disability. Those benefits were created to help with all costs of disability including loss of earnings and higher fuel bills, leisure and housing costs and extra dietary needs. Many of those on AA/DLA do not make use of fee paying care services and so switching resources away from AA/DLA and into professional care would mean that many beneficiaries of those benefits could lose out.
In England, 1.26 million people receive social care services but 3.82 million receive AA/DLA. Could and would care services be expanded threefold to provide services to the 2. 56 million people who could loose their benefits?
Research shows that much of AA/DLA is spent on a broad range of informal care services such as paying for gardening, sharing lifts in cars and paying for someone to do shopping. These informal arrangements work well and bring with them a social network; friends are made and health and quality of life is enhanced. This all supports the core principle of Individual Budgets that the care and benefit system has recently promoted. Transferring AA/DLA to social services would involve extending bureaucratic control over peoples’ lives and reducing the right to has choice.
Note: Social Services already have far too much control over disabled people’s lives. The new agenda of personalisation is meant to give choice and control to the individual, not to Statutory Services.
There is much anecdotal evidence about the standard of care received when provided by social services. Most people prefer to arrange their own carers and helpers, people they know and trust within their home and to whom there is often a growing affection. Helpers from social services often change and many claimants do not wish to have this constant turnover of people whom they see as “strangers” entering their home to provide them with care. This, not only puts vulnerable people in danger, as it could be anyone entering their home, it goes against the protection of vulnerable adults and is open to abuse.
The advantages of AA and DLA are that they are paid through the social security system and underpinned by standard, national, transparent and legally enforceable criteria and can be challenged by formal appeal processes. This not the case with the “postcode lottery” of social services “rights”.
Neither AA nor DLA are currently means tested so all those with sufficient needs can claim them. This also means that it is cheap to administer. However the social services system for care is means tested so transferring AA/DLA money to that system may not only affect the right to care because of income or savings but also increase the cost of administration.
Note: Many people who receive direct payments are currently contributing to the cost of their care package as local councils are already allowed to take 50% of their DLA care component. AA can also be used to help pay for care services in the home under Fairer Charging Policies for Home Care and other non-residential Social Services.
We do not support the suggested options of funding in the green paper for Social care as we believe the failure to provide basic social care to people infringes their human rights by restricting their ability to interact as members of society and to fulfill their potential aspirations as human beings.
We therefore ask the Government to revisit the funding of Social Care through general taxation, as is the funding of the Police, HM Prisons and Education. So why doubly and unfairly tax sick, older and disabled people who need this country’s support?
Any new plans must ensure the following:
- A national system of care and support that is fair, simple and affordable for everyone
- Prevention of dependency
- Promote independent living as an outcome, not a service
- Joined-up Services
- National assessment and portability
- Personalised care and support
- Personal budgets must cover all the things disabled people need to live a full and independent life
- Free independent living support for disabled people (see Appendix 2)
- Fair Funding
For disabled people to really be empowered we need strong ‘independent’ Centre’s for Independent Living* (see Appendix 3) in every county to provide:
- Accurate and up-to-date information
- Practical support and guidance
- Independent advocacy and peer support
- Other enabling support and assistance services
The term ‘disabled people’ is based on the definition of disability used in the Disability Discrimination Act. This applies to a wide range of disabilities including long-term health conditions ranging from people with Alzheimer’s and arthritis, to those with learning disabilities, depression, diabetes, cancer and so on.
Independent Living and Disabled People
Most people would define Independence in terms of those activities someone is physically able to carry out for themselves. Following this line of reasoning, Independent Living would thus probably be explained in terms of the ability to provide for ones own basic physical and intellectual needs on a day to day basis. Thus one of the ways disabled people and non-disabled people are defined as such is via notions of dependency. In many people’s view, to be disabled is to be dependent on others or to have choice compromised.
The trouble with such a widely accepted viewpoint is that it omits to recognise that human beings are social animals and that we are all inter-dependent on each other for many of our needs. Those people with the financial ability to do so might chose to employ someone to do many of life’s everyday chores, like washing, cooking and cleaning, but in such a scenario they are still considered to be independent and not regarded as dependant on others.
Independent Living means something very different to disabled people. It is no longer defined in terms of what activities the individual can or cannot do for themselves, but is about having control over the resources that enable us to exert influence, choice and control over every aspect of our life.