‘Shaping the Future of Care” – MEA response to the Green Paper

September 30, 2009

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. One proposal has set alarm bells ringing. This concerns the integration of “some elements of disability benefits, for example Attendance Allowance, to create a new offer for individuals with care and support needs”.

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 a different 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 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 some in the charity world and amongst claimants who fear this could be the next step.

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 The ME Association’s concerns are these:

  • 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 lost earnings and higher fuel bills, leisure and housing costs. 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 is enhanced. This all supports the core principle of Individual Budgets that the care and benefit system has recently championed. Transferring AA/DLA to social services would involve extending bureaucratic control over peoples’ lives and reducing the right of the choice.
  • 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.
  • 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.
  • ME is not an easily understood illness. The number of successful appeals under the current benefits system testifies to that. We have concerns as to how claimants will fare under a new system that is locally administered.


The ME Association is listening to your views on the Green Paper proposals and how they may affect you. We shall be writing to the Government about our concerns before the consultation period on the proposals ends on 13 November 2009. Your input would help us to make our case. Following the consultation a White Paper setting out the plans will be presented to Parliament in 2010 but It is likely to be some time before the changes become law and the new care and support system is put into operation.

If you haven't yet let us know what you think about the proposals, please let us have your comments by email or write to: Green Paper on Care, The ME Association, 7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF,

For more information see:-

Government Green Paper

Neil Riley, Chairman, The ME Association

29 September 2009.

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