RNIB's response to Fairer Charging Policies for Home Careand Other Non-residential Social Services.

Dr Mark Baker.

STATE YOUR COMMENTSON THE FOLLOWING ISSUES:

The treatment ofIncome Support and the Effects of Charges on Users' Incomes (paragraphs 7-8 ofthis paper and Section V of the draft guidance):

a) General:

* RNIB remainsopposed to charging for home care on principle, believing that it discouragessocial inclusion and impoverishes the least well-off.

* RNIB believes thatno person in receipt of Income Support should be asked to make a contributiontowards their home care charges. Peopleon Income Support are amongst the very poorest in our society, even if they arein receipt of other state benefits, and to impoverish them further is unjustifiable.

* RNIB welcomes theproposal that no-one should be charged so that they fall below the level ofbasic Income Support, but, in addition, asks that the Department issuesimmediate guidance outlawing this practice.

* Other essentialhealth-related services such as dentistry and prescriptions exempt people onincome support; to ask these people to pay for home care is inconsistent.

* RNIB agrees thatthere is a need to protect the poorest people, but feels that the proposal ofIncome Support plus 25% is too little, unless this is after all major livingcosts, including disability-related costs, are taken into account.

* A furtherinconsistency is revealed with the Disability Income Guarantee, which allowsfor a minimum income of 142 for eligible disabled people, far in excess of theproposals in the Guidance.

* RNIB, as a memberof the Coalition on Charging, suggests that the minimum income should be basedupon the Disability Income Guarantee plus a 25% minimum buffer.

b) Do you agree thatflat-rate charging policies will not secure the aims set out at paragraph 7?

* RNIB welcomes theend of flat-rate charging, believing it to be the most iniquitous means ofassessing what a person should be asked to pay

c) Do you agree thatthere will usually need to be a detailed assessment of a person's resources andexpenditure, which also has regard to the effects of a charge on disposableincome?

* Although there is aneed for an assessment of expenditure with regard to an ability to pay, thereare methodologies available which may mean that those who do not wish to besubjected to a rigorous and intrusive means test can have a fair assessment oftheir financial outgoings.

* The establishmentof agreed budget standards for groups of disabled people can be seen as a wayforward in assessing the basic amount of income a person needs to live onbefore charges are levied, whilst at the same time potentially lessening theexpense to local authorities of extensive means-testing.

The treatment ofdisability-related benefits and assessment of disability-related expenditure(paragraphs 9-13 of this paper and Section VI of the draft guidance):

a) General:

* RNIB believes thatit is wrong to assess the income from disability-related benefits as incomeagainst which charges can be levied.

* Disability-relatedbenefits are recognised as being paid to assist with the extra costs arisingfrom being disabled. Research has shownfrequently that they fail to meet these costs for the vast majority of recipients,meaning that there is no income left to meet the added burden of charges forhome care.

* Paragraph 40 of theguidance, which states that "in a minority of cases the level ofdisability-related expenditure may exceed any disability-related benefit takeninto account as income" should be amended, as it gives a totallymisleading impression of the real situation, and may encourage localauthorities to believe that their assessments are over-generous when they findthe opposite to be the case

Agree

Neither Agree

nor Disagree

Disagree

* The fact that it isrecognised as unacceptable for a local authority to charge against the higherrate of Disability Living Allowance for service provided during the say shouldbe stated clearly and unequivocally in the guidance.

* Older peopleclaiming Attendance Allowance do not receive a benefit component to help withmobility, and yet may still have significant mobility-related costs; for thisreason RNIB believes that, at the least, the higher rate of AttendanceAllowance should be disregarded as eligible income.

* The SevereDisablement Premium of Income Support should not be treated separately fromIncome Support as a non means-tested disability related benefit. SDP is paid solely according to therecipient's circumstances and losing a substantial part of this source ofincome would serve only to impoverish people further.

* SDP is also paidlargely to people living alone, who will have significant extra costs oversomeone living in a couple. Chargingagainst SDP is likely to have a significant impoverishing effect upon manysingle disabled people.

b) Should councils beexpected to assess disability-related expenditure specifically, where they takedisability-related benefits into account as income?

* Whilst RNIBrecognises the need for a fair assessment of the disability-related costs ofthe individual, the standardisation of this as a practice should be accompaniedby a standardisation of procedure, with strong guidance as to how to carry outsuch assessments available to local authorities.

* It is important toremember that assessments based upon outgoings are restricted to the budgetlevel at which the participant is already operating and may ignore essentialswhich someone cannot afford but is already having to do without.

* The nature ofdisability-related costs is not limited to those of a specialist nature. Visually impaired people often do morelaundry than sighted people, meaning extra expenditure on non-specialistwashing powders, as well as increased wear and tear on washing machines, whichmay need to be repaired/replaced suddenly.

* Similarly, peoplewho rely upon friends and neighbours for help often reward them withnon-monetary gifts for which receipts are unavailable.

* RNIB feels itimportant that the guidance contains an exhaustive appendix which lists thesources of potential extra costs after consultation with relevant disabilityorganisations, thereby giving local authorities no reason for not including asfull a range as is appropriate.

* Payments made inorder to alleviate extra costs, such as winter fuel payments should also bedisregarded from any calculation of eligible income for charging.

c) Should theprovision of Welfare Rights advice be encouraged alongside assessment ofability to pay home care charges?

* RNIB agrees thatdisabled people should be informed about and encouraged to apply for allbenefits to which they may be entitled.However, this service should ideally not be provided as part of anassessment of a person's ability to pay a charge. Disability benefits take-up campaigns should be operatedseparately from social services by trained specialist advisors.

* Anyone who advisesvisually impaired people about the benefits they might be entitled to shouldhave received visual awareness training and be prepared to assist these peoplethroughout the claims process.

d) Do you know ofother good practice examples of assessment of disability-related expenditure?

* RNIB's ownexploration of the sources of disability-related extra costs "The Costs ofBlindness" (Baker et al, 2000) provides a wealth of information concerningthe types of expenditure for visually impaired people.

* Current researchproposals with Joseph Rowntree from the Disability Benefits Consortium and theCentre for Social Policy Research at the University of Loughborough will use amethodology whereby consensual budget standards will be set for groups ofdisabled people; further information on consensual budget standards isavailable in; Dobson, B. & S.Middleton (1998). Paying to Care: The Costs of Childhood Disability. York Publishing Services in association withthe Joseph Rowntree Foundation.

* Other publishedworks dealing with the issues of disability-related costs and their mesurementinclude;

Baldwin, S. (1985);The Costs of Caring; Families with Disabled Children, London, Routledge

Berthoud, R., J.Lakey& S.McKay (1993), The Economic Problems of Disabled People,London, PSI.

Berthoud, R. (1998),Disability Benefits: A Review of the Issues and Options for Reform, York, Rowntree.

Craig, P. & MGreenslade (1998), First Findings from the Disability Follow-up to the FamilyResources Survey, Cm3805, London, Stationery Office.

Hyman, M. (1977), TheExtra Cost of Disabled Living, London, NFRCD.

Kestenbaum, A (1997),Disability-related Costs and Charges for Community Care, London, DIG.

Thomspon, P.,M.Lavery & M.Curtice (1990), Short-changed by Disability: Being DisabledCosts More than they Said, London, DIG

Savings and capital(paragraph 14 of this paper and Section VII of the draft guidance):

* RNIB believes thatthe threshold of savings for people living in their own homes should be greaterthan for those in residential care.People in their own home need more savings to pay for daily expenses aswell as sudden maintenance costs which can prove very expensive and this shouldbe reflected in the guidance. As a bareminimum, RNIB concurs with the Coalition on Charging by suggesting that theRoyal Commission on Long Term Care's proposal of an upper savings limit of30,000 for people in residential care be used for people living in their ownhomes.

Agree

Neither Agree

nor Disagree

Disagree

* The proposal thatpeople with more than 18500 in savings should pay a full charge penalisespeople who have been financially prudent throughout their lives whilst alsoeroding a key source of revenue for older people living in their own homes,potentially undermining their continued independence.

* In some cases, theguidance's attitude to savings can be seen as a disincentive to fiscal probityin direct contradiction to stated Government policy regarding savings, pensionsand insurance.

* Many disabledpeople, particularly people with a progressive condition, save what they can inorder to purchase essential and expensive items of equipment which are notprovided by the local authority. It isunfair to expect these people to pay higher charges and do without keyinterventions for longer.

Partner's Income andsavings (paragraph 15 of this paper and Section VIII of the draft guidance):

* RNIB feels thatthis section of the guidance needs to be firmer, and that it should mirror theposition laid out on HASSASSA (1983) whereby it is stated that charging againsta partner's income is illegal.

* Partners ofdisabled people are often forced to make financial sacrifices in terms both oftaking on a far greater share of household costs and some of the extra costs ofdisability which benefits cannot meet.

* Furthermore, therestrictions that caring for a disabled person can have upon a partner's careeralso involve financial sacrifices including loss of promotion opportunities,part-time work, restrictions on overtime and early retirement.

Agree

Neither Agree

nor Disagree

Disagree

* RNIB believes thatwhen local authorities opt to examine the eligibility of a service user'spartner's income, they should do so only on the basis of legal adviceparticular to each individual case.

* There are alsocases when a disabled person's income may be the main source of income for thehousehold and may be the main financial resource for other household members;in such cases it would be doubly unfair to seek to penalise the service user'spartner.

* Paragraph 50 isinherently contradictory, suggesting that partners saving be both "treatedas divided equally..." and that they should be considered together. More clarification is needed on this point.

Work incentives(paragraphs 16-19 of this paper and Section IX of the draft guidance):

* Despite the statedintention of the guidance, RNIB believes that a number of potentialdisincentives to work may still result.

Agree

Neither Agree

nor Disagree

Disagree

* The notion that aguaranteed minimum income of Income Support plus 25% will provide greaterincentive to work is still unlikely to tempt people into work.

* Given that thenumber of service users who are currently in work is so small, and that thevast majority of disabled people are over retirement age, RNIB feels that theGovernment can afford to be more generous than the 55% of earnings currentlysuggested. Enabling local authoritiesto claim more than half of a working person's earnings serves only to add tothe already numerous barriers which face disabled people who want to find andkeep work.

* RNIB agrees that amaximum figure needs to be set, but believes that it should be considerablylower than 55%. Furthermore, thismaximum figure ought to be extended to other sources of income such aspensions, where currently no cap applies.

Timing and otherimplementation issues (paragraphs 21-24 of this paper):

Agree

Neither Agree

nor Disagree

Disagree

* With regard to thetimescale of implementation, RNIB has concerns that nothing is being done todeal with current hardship. With theproposals regarding the protection of Income Support, we feel that theDepartment could issue an interim note outlawing the practice of chargingpeople so that their income slips below this level with immediate effect

Management of chargesand charging policies (SectionVII of the draft guidance):

* Regardinginformation about charges, appeal procedures and complaints, RNIB demands thatthe guidance makes it clear that any printed or written information is madeavailable in the format desired by the recipient with no extra delay to itbeing received.

* Local authoritysocial service departments should also be prepared to conduct correspondencewith visually impaired clients in the format they desire.

* At the very least,guidance should be issues to ensure that local authorities are fulfilling theirobligations under the Disability Discrimination Act by producing allinformation relevant to their charging policies, including bills andcorrespondence in a format which the recipient can read.

* Furthermore, upondemand, a print copy should accompany any alternative format information sothat it can be read by another person at the request of a visually impairedservice user.

* The guidance shouldalso suggest fixed intervals for regular consultation with service users, andmake it clear that consultation should form part of the decision-makingprocesses of local authorities with regard to charging.

Other issues andGeneral Comments:

* The essentialnature of home care should never be forgotten; these are not services whichpeople avail themselves of because they want to, rather they use them becausethese services are necessary to their health and well-being. RNIB believes that it is unjustifiably wrongto charge people for fundamental services.

* One of theoverriding aims of the guidance was to end the vast regional differences incharges levied. However, RNIB feelsthat throughout the guidance, opportunities for manufacturing a more uniformsystem have been missed, thereby doing little to end the iniquities andimbalances of the current system.

* These missedopportunities are;

- Policies towardsdisability-related benefits with local authorities being able to decide to takethem wholly into account or dismiss them as eligible income altogether.

- The setting of amaximum charge level is suggested, but no figure is mentioned, and noobligation to set a maximum is included.

- The continuedconfusion over partner's income and capital mean that considerable discretionon policy is left with individual authorities.

- Similarly, there istoo much local authority discretion with regard to service users' savings toensure greater equality.

* RNIB believes thatthe argument that raising money through charges ensures higher quality servicesis specious. There is no proven linkbetween charging and quality; Derbyshire, for example, whose social servicesare rated highly, have no home care charges.

* Charging for homecare is directly opposed to the Government's policy of promoting socialinclusion, rather it serves to add to the isolation and exclusion experiencedby many disabled people by reducing their available income yet further.

* The implicationthat worse-off disabled people should have their services paid for bybetter-off disabled people is unfair.The vast majority of disabled people are poor and the notion thatsignificant numbers of them can afford to subsidise services is a myth.