 |
access key options 
skip navigation what's new home site map search
disability benefits consortium home page
about us | benefits | contact us | frequently asked questions | links | make a donation | membership | publications | tax credits | what we do | what you can claim
Disability Alliance response R30This response by the Coalition on Charging has been compiled by the Coalition's Steering Group, which comprises representatives from Mencap, Age Concern, Help the Aged, National Centre for Independent Living, Disability Alliance, Scope, RNID, RNIB, Leonard Cheshire, Carers UK, RADAR and Mind.
We have not had the opportunity to collect comments from other member organisations, due to the extremely short period of the consultation process. We do not feel that this is an ideal situation, and believe that other organisations should also have the opportunity to comment on the draft practice guidance.
We are concerned by the short consultation time for this document. The Home Office document Consultation and Policy Appraisal: A Code of Good Practice suggests 12 weeks as a minimum period for written consultations. Likewise the Cabinet Office document The Code of Practice on Government Consultation (2000) suggests 12 weeks as a minimum consultation period and states that where the period is shorter, the document under consultation should state the Minster's reasons for departing from this code of practice. We are disappointed that these guidelines have not been followed in this case.
We have a number of concerns about the practice guidance, which are explored in more detail later in this document. In brief, our main concerns are:
The immediate impression of the Coalition on Charging is that there are a large number of elements missing from this practice guidance. Disability related expenditure, benefits advice and good practice standards/performance monitoring are without doubt elements of the guidance where local authorities should be provided with good practice advice. However, there are a number of other elements which are equally important and which should be given the same weight.
We are aware that there is an existing publication Discretionary Charges: A Good Practice Handbook produced by the Association of County Councils and the Association of Metropolitan Authorities. This gives clear guidelines on many aspects of process of charging, which could be largely reiterated here. It is disappointing that the opportunity was not taken in producing this guidance, to update and enhance this publication which is well respected by members of the Coalition. Much of the information could have been incorporated into this practice guidance.
The most important elements missing from the guidance include:
The Coalition believes that this section lacks basic information. In our view, it should clearly outline the various policy options for local authorities, (including not charging). It should also outline the various areas in which Fairer Charging actively requires local authorities to consult service users. These include taking account of disability-related expenditure for all service users (not just where disability-related benefits are considered), whether and how to set a maximum charge and the treatment of savings.
This section also noticeably lacks information about the process of consultation or good practice in consultation. We do not believe that this would be impossible or difficult to provide.
Consultation with service users needs to be clearly planned, to ensure that people have the time and opportunity to respond. Following a consultation process, all individuals and organisations which have responded should be contacted in writing with an outline of the decisions which have been taken and an explanation of how and why these decisions have been reached. This opportunity should also be taken to encourage service users to respond to consultation processes in the future. Our concern is that if individuals feel that their views have not been taken into account and no reasons are given for this, they may decline to be involved in future consultations.
The final section of paragraph 7 (the reference to giving information to accountants) is profoundly insulting to service users. There is no comparison between voluntarily giving information to an accountant (for the specific purpose of paying less tax) and being required to provide information to a local authority (for the purpose of assessing the charge for a service you need to use to maintain a basic quality of life). The kind of information involved is by no means the same - this is not a question of providing information on income and financial management, but of being asked to reveal, for example, information about products used or washing costs incurred because of incontinence. Furthermore the balance of power is entirely different. People choose to employ accountants, but do not choose to be consulted about their intimate costs. The Coalition on Charging would like to see this sentence removed to avoid offence to service users.
The reference to 10 hours or more of home care weekly (paragraph 105 of Fairer Charging and paragraph 9 of the practice guidance) needs clarification. The Coalition considers that time spent using day services constitutes home care, as this may be providing a vital respite service, or enabling the service user to get care or attendance they may not be able to get elsewhere (such as taking a bath, where there is an accessible bath at a centre, but not in the user's home). Many service users have questioned what "home care" constitutes, and it needs to be resolved.
The Coalition on Charging believes that this section should be introduced by a brief paragraph reminding local authorities that this is a sensitive area, and that this should always be borne in mind when working with or discussing disability-related costs with service users.
This section also lacks information about ensuring the confidentiality of the service user, or encouraging their autonomy. Indeed, there are implications that the information service users provide will be passed to other parties. Similarly, there is no advice about the provision of information to service users to enable them to understand the concept of disability-related costs, and what kind of items they might consider.
The Coalition on Charging is deeply concerned by the inference in paragraph 25 that a financial assessment can be carried out at the same time as a care assessment. Members of the Coalition are regularly contacted by service users who believe that they will not receive services if they do not have the ability to pay for them, or that they will be expected to purchase their own services if they have certain levels of income. There is enormous confusion among service users as to their rights in this area, and this is highly likely to be exacerbated if these assessments take place together. The right to receive services is entirely different to the local authority's right to recover charges, and this should be reinforced to all parties. We believe the only fair way to carry out these assessments is to have a community care service assessment first, followed by a financial assessment shortly afterwards.
It goes without saying that local authorities must provide good training to the people they engage to carry out financial assessments or assess disability-related expenditure. This should be considered from a welfare rights point of view, with adequate information provided to service users about disability-related costs. Local authorities should closely monitor the work of employees carrying out these assessments (or those contracted to do so). The practice guidance should also emphasise that service users should be informed of their right to appeal about their charge, or the assessment of their disability-related costs, if they feel this is necessary.
The Coalition is concerned about the lack of specific information about backdating charges in paragraph 33. Large backdated bills, especially where incurred through no fault of the user, often cause considerable worry and distress. Although we are glad to see the statement that charge assessments may not be backdated before the original date of assessment, we are concerned that heavy backdating of charges on final receipt of benefits may affect a service user's choice about applying for benefits.
Given the information about backdating claims, the Coalition would also like to see practice advice on how local authorities should act where there has been an overpayment of a charge. We believe absolutely that any possible overpayment of charge should be examined in detail, and where an overpayment has been made, the excess should be refunded to the service user in full as soon as the overpayment is confirmed.
We remain concerned about the emphasis on producing evidence for expenditure. As the Coalition outlined in its response to the draft of Fairer Charging, it is not always possible for service users to document every item of disability-related expenditure. A very large number of disabled and older people may thank those who provide informal services with gifts. Where a person needs help with transport, they may pay petrol costs, but not receive a receipt. We would argue that a certain amount of a person's disability-related costs must be taken on trust, particularly with the emphasis in Fairer Charging on self-assessment.
The Coalition is concerned at the lack of consideration of loans (including social fund loans) people may be paying, particularly where the loan has been taken out to pay for a large disability-related item. References to this should be contained in paragraph 37 of the practice guidance and in the list of disability-related costs in paragraph 43 of the practice guidance.
With regard to the list of disability-related costs, we are pleased to see that the information about washing powders, etc, now contains an explanation that costs incurred may be simply due to the need to wash clothes and bedding more often, as well as the need for specialist powders. However, we are concerned that this principle has not been extended to information about dietary needs. Many disabled people do not have special dietary needs, but do have to purchase pre-prepared food as they are not able to cook for themselves. This should be clearly reflected in the practice guidance.
We are also concerned that the information about personal assistance costs does not take account of items other than meals or transport costs. A large number of people who need support outside the home will also incur other costs, particularly around leisure pursuits. This group of people will need to buy two cinema or theatre tickets, two entrance tickets to museums, and countless other items in duplicate, where a non-disabled person only has to pay once.
Where the list of costs mentions 'the higher needs of cleaning as a consequence of disability', the information should make clear that 'other household members' should only include people actually living in the household, and that extra tasks due to a person's disability should not place an excessive or inappropriate burden on those other members. We are particularly concerned to ensure that local authorities do not place unrealistic domestic duty burdens on children and elderly spouses.
Other items or costs which the Coalition believes should be included in this list are:
We remain deeply concerned by the statement that: 'costs which arise simply from a user's choice for a higher quality product or service than that provided by public services, need not be allowed'. Many disabled people find that items which should be provided by public services are often unobtainable or simply unusable. It is utterly unacceptable that they should not be able to claim for costs that they incur because what is on offer to them free is in practice not available, or not of an acceptable standard. It is reasonable to assume that where people can obtain a decent item or service free, they would not choose to pay for it - especially if they are reliant on a low or benefit composed income. Stating that people have no right to claim for items they should theoretically get free of charge is tantamount to a suggestion that older and disabled people and carers can expect to put up with services and situations that other people would not expect and perpetuates the suggestion that these groups of people are second class citizens.
We are also particularly concerned about the statement: 'Transport costs as a consequence of disability for people not receiving the Mobility component of DLA should be allowed.'. The clear implication from this statement is that the mobility component of DLA should be taken into account as part of a person's financial assessment. We believe this to be unlawful under section 73(14) Social Security Contributions Act 1992 and are seeking legal advice on this matter. We believe that the statement in the statutory guidance that: 'other transport costs. over and above the mobility component of DLA, if in payment and available to pay these costs.' is similarly unlawful and will be taking this up with the Department of Health.
The Coalition believes that paragraph 44 should contain a reminder to local authorities that they should inform service users of their right to appeal on their disability-related costs, if they feel they are not being fully or properly assessed.
The Coalition on Charging is also concerned by the final sentence in paragraph 46, which refers to holidays and respite care. A person who has an assessed need of respite care services may use those services, but may well also choose to go on private holidays at other times and with different people. They should be entitled to offset the costs of taking a carer on such holidays, provided of course that the number and costs of such holidays are not excessive.
We believe that the costs of heating have been tackled in a way that is very difficult and may be unfeasible. The costs quoted in the guidance (paragraph 51) seem high compared to the costs of many people who live in the types of accommodation quoted. Given that the survey quoted does not separate out disabled and non-disabled households, it can also be assumed that these costs, as averages, already reflect some extent of disability-related heating expenditure. Costs for non-disabled households only, which is what the guidance should quote if we are to find an adequate allowance for disability-related costs, would be lower.
Another, possibly more practicable, approach to this very difficult area would be to assume certain extra heating and hot water costs caused by disability that people are likely to need to offset. There could be a general level of automatic offset for these costs, with the indication that if service users believe that their extra costs are more than this, they can make a request for higher costs to be considered. Some work has already been undertaken on this, which could give an indication of the kind of extra costs that people face. The Disablement Income Group report Disability-Related Costs and Charges for Community Care (1997) found that at the time the report was published, between £5 and £10 was quoted as costs for necessary extra heating.
The need for extra heating and hot water will vary according to the nature and severity of the service user's disability or condition. A large number of conditions are highly likely to result in a need for greater warmth in the home, or the need for more hot water. They include arthritis, incontinence, severe mobility problems (such as where people need help to move around), conditions which involve poor circulation (such as Down's syndrome) and any condition which causes joint swelling, a weakened immune system or substantial loss of body weight. Local authorities should be alerted to the fact that people with these, and other, conditions may well be paying higher fuel costs than average.
It should also be pointed out that younger disabled people do not receive the winter fuel allowance payable to older people. Given this circumstance, it is all the more important that their higher fuel costs are considered.
We are surprised by the omission in the practice guidance to tackle the outstanding question of housing costs which arises when disabled or older people live with carers in the carers' own home. We know that service users living with carers may well contribute towards household costs, such as rent or bills, and also that carers often have to subsidise an older or disabled family member who lives with them. The Coalition believes that it is reasonable for the service user to have a contribution to housing costs considered in their financial assessment, to avoid carers having to subsidise their family member further.
As with the initial draft of Fairer Charging Policies, we are concerned that carers' circumstances and needs have not been fully taken into account in this practice guidance. In particular, carers have additional expenditure which arises from their caring role. These include:
We would like to see the reiteration of the reminder contained in Fairer Charging Policies that carers cannot be awarded services instead of the person they care for, simply because they have more resources to pay charges.
The guidance Fairer Charging Policies imposes for the first time a statutory duty on local authorities to provide benefits advice to users of non-residential services (assuming that a charging policy is in operation). We would therefore like to see a statement early in this section of the practice guidance that local authorities must provide this advice regardless of whether disability-related benefits are being taken into account.
Similarly the reminder that some service users would prefer to obtain benefits advice from an independent source, and that this should be available, should be stated at the outset (not at the end of paragraph 100).
Paragraph 68 should include a reminder that "a separate group of skilled staff" may in fact be a group of staff which is independent to the local authority.
We are concerned about references to local authorities seeking information from GPs. There is no requirement on GPs to give this advice to local authorities and they may well not do so. Indeed, the recent Cabinet Office paper "Reducing General Practitioners' Paperwork" (March 2001) is specifically aimed at reducing paperwork for GPs, and recommends that they no longer provide such information to third parties. We would like to see these sections of the practice guidance revised to take account of this.
Paragraph 97 contains no reference to the need for skills (and therefore training) in the area of carers' benefits and expenditure. This needs to be rectified. Paragraph 98 could also contain references to Disability Alliance and Carers UK as highly respected providers of training on benefits rights.
Members of the Coalition are particularly concerned about the example quoted in the box on page 32,which refers to a letter to the Disability Benefits Centre to be signed by the claimant authorising the DBC to discuss queries with the council, and containing a tear off slip that the DBC can send to the council to confirm awards (or otherwise) of benefits. This will suggest to service users that the money they receive does not actually belong to them, and that they have no rights of confidentiality over their claim, or how they choose to spend the money they may receive as a result of the claim.
Although we are pleased to see some of the targets outlined in this section (most specifically the target to bill within four weeks and to write off excesses over four weeks where this has arisen through council delay), others are giving cause for concern. Most specifically, we are perplexed by the third target, which refers to "5 days of receipt of referral" but does not specify what referral is under consideration.
We would also wish to ensure that there is monitoring of the outcomes of staff undertaking disability related expenditure assessments. In particular the need to monitor whether some staff routinely assess lower levels of disability related expenditure than others. Given the sensitive nature of the interviews and that most service users will not be able to easily gauge their extra expenditure, they might be heavily influenced by the way the member of staff approaches the task of establishing the extra expenditure.
The Coalition is likewise perplexed by the objectives of good practice contained in Annex 1. Many of these appear to be by-products of Fairer Charging Policies, rather than specific objectives.
We are most particularly concerned by the objective: 'Increased income for the council which may be spent on increased service'. As we outlined in our response to Fairer Charging Policies, the Coalition believes it is inappropriate and unacceptable to obtain more money for council services from those in the community who are very often among the least able to pay - especially where there is no guarantee that the money raised will be put back into the services for which people are being charged.
The Coalition on Charging is particularly concerned that the practice guidance lacks information about good practice with regard to informing service users about charging, and about their rights in this area. We believe that this is one key area omitted by the practice guidance which must be added in if there is to be a real possibility of fairness in charging policies. All service users must be aware of how their charges have been calculated, how much they are being asked to pay, what their rights to appeal are, and how they should go about informing their council if they cannot pay. All of this information should be provided in straightforward documents, and in formats that are accessible to the service user concerned. They should be regularly updated. Discretionary Charges: A Good Practice Handbook mentioned earlier has a section on drawing up a comprehensive information strategy which authorities may find helpful.
The Coalition on Charging has a number of queries about the content of this practice guidance. However, we remain equally concerned about areas where there is a lack of good practice guidance. Given that there is a well-respected publication - Discretionary Charges - A Good Practice Handbook - in existence (albeit in need of updating), there is no reason why local authorities should not receive good practice guidance which builds on this. The failure to provide such guidelines can only hinder local authorities which are carrying out charging policies, and cause unnecessary financial and emotional stress to service users who are being charged.
Coalition on Charging
March 2002
