www.capability-scotland.org.uk

February 2011

Key points

Disabled people in Scotland are being charged too much for essential services because their local authority does not take into account their disability-related expenditure Many local authorities are counting disability related benefits as if they are earned income in the financial assessment The system in England is much fairer with clear guidelines in relation to the calculation of care charges

Scottish charity SC011330 Scottish company SC36524 limited by guarantee

Capability ScotlandHead Office, Westerlea11 Ellersly RoadEdinburghEH12 6HY

Telephone: 0131 337 9876Textphone: 0131 346 2529

Fax: 0131 346 7864

Disability Related ExpenditureCapability Scotland is concerned that many disabled people are being overcharged for non-residential care by their local authority. Our research indicates people are being made to pay more that they can afford for essential services such as help with preparing and eating meals, getting dressed and getting to the toilet. This is leaving them without the means to live independently and make the choices that others often take for granted.

Scottish law says that local authorities should only be charging people what it is reasonable for them to pay towards non-residential care. However, in deciding what is reasonable, many local authorities are not considering the huge added expense that can come from having a disability.

In England, clear guidelines exist in relation to the calculation of care charges. Under Department of Health rules, if disability benefits are included as income in a disabled person’s financial assessment for care charging, the local authority must also discount any income used to meet the additional costs of being disabled. The result is more equitable; the less money the disabled person has available to them because of their disability, the less they pay for care. Capability Scotland is calling on Scottish local authorities to reflect English best practice in order that the people who have the highest support needs in our society are not penalised for it.

What is the issue?

The added costs of disability can be endless. People with limited mobility, for instance, often face higher heating costs because they need to maintain their body temperature, as well as higher laundry costs and the expense of paying for specialist equipment and care.

Getting around can also be more expensive if you’re disabled. Whilst you can get help with the cost of a motability car, you still have to pay for petrol and specialist driving equipment. Or, if you are unable to drive a car, you face the added cost of taking a taxi every time you wanted to go out. Many disabled people also have to cover the added cost of certain aids and adaptations to their homes, for wheelchair repairs and for help with tasks they might otherwise do themselves (such as fitting draught excluders or cutting the lawn). These things can really add up.

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Should Disability Living Allowance cover these costs?

Disability Living Allowance (DLA) is a non-means tested benefit which, according to the Government ‘provides cash support to help overcome the barriers which prevent disabled people participating in everyday life’. Claimants can receive one or both of the 2 components; the Mobility Component and Care Component (see Appendix 2).

In many cases, this will help to meet some of the costs listed above. The problem is, however, that many local authorities include income from disability benefits such as DLA as if it were earned income in the financial assessment. As a consequence, the disabled person’s income is artificially inflated, leading to a higher charge for care and lower overall cost to the local authority of providing it.

Government studies and other research have confirmed that benefits don’t cover the costs of a severe disability. In 2005 the Department for Work and Pensions reviewed existing research studies about the costs of disability1 and, although there was disagreement within the research about the size of these costs and how best to measure them, it was concluded that there are extra costs incurred by disability, with estimations ranging from £7.24 to £1,513 per week. The report also acknowledges that many of the studies are about what people actually spend rather than what they would spend. It is therefore well documented that benefits don’t cover the costs of a severe disability.

February 2011

Is this just a Scottish issue?

In England the Department of Health has produced guidance for local authorities2 which states that when disability benefits are taken into account in the financial assessment, the council should also take disability-related expenditure into account. It also provides a breakdown of what disability related expenditure is and what it can and cannot include. This makes it easier for local authorities to calculate disability related expenditure and it makes the system easier and more reliable for disabled people. The guidance can result in significant amounts of spending being discounted by local authorities.

In Scotland the Convention of Scottish Local Authorities (COSLA) produces guidance for local authorities3. Although most local authorities adhere to this guidance by disregarding the mobility component of Disability Living Allowance, they do not seem to acknowledge that this guidance also states that they can disregard specific costs of living such as disability related expenditure.

Margaret’s story

When Margaret began receiving home care services she did not receive the care component of Disability Living Allowance. Later on she was awarded this benefit and informed the council finance team of this. However this was not recorded and when the error was discovered some time later she received a bill for home care charges for the previous 12 months. She is struggling financially to pay this bill and as well as meeting her other expenses.

Kate’s storyKate has a 14 year old son with cerebral palsy and is struggling to pay her fuel bills since he feels the cold and therefore needs the heating on more. He also has equipment, including an electric wheelchair that needs to be charged overnight. Kate contacted her fuel provider to ask whether they would be eligible for their social tariff, but because the fuel provider takes Disability Living Allowance into account as income, the family income was deemed too high.

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August 2010February 2011

Archie’s story

Archie felt that he was being charged too much for non-residential care, so he used the English Department of Health guidance to calculate what his disability related expenditure was.

He calculated that he spent more than £79 every week on his disability. This was on top of the costs that he covered using the mobility component of his DLA. He asked his local authority to take his disability related expenditure into account and they told him they would only take into account £5 of his weekly spend. They told him they only take exceptional, rather than reasonable, costs into account.

Archie appealed the decision and contacted the Scottish Public Services Ombudsman, but was told local authorities have discretion in what they charge and what they discount.

How did we research the issue?

We contacted all 32 Scottish local authorities to ask whether their financial assessment for non-residential care takes disability related expenditure into account. We also asked whether any disability benefits would be disregarded. We did this by checking local authority websites, then phoning them and in three instances writing or emailing the local authority.

Findings

Although COSLA guidance states that all councils have a duty to provide clear and concise information about their charging policy, we found it difficult to get this information. Some local authorities had basic information on their website with a contact number of where to get more information. This online information however was mainly about whether DLA would be taken into account in the financial assessment, and only three (East Lothian, Edinburgh, and the Borders) mentioned considering expenditure related to health needs or disability. However when we actually spoke to these local authorities by phone two of them, East Lothian and

Borders told us they would not consider disability related expenditure in the assessment.

There was no information at all on 12 local authority websites. When we contacted local authorities by phone we got various responses; including being told that someone would call us back, though in two instances no-one ever did. One local authority asked us to put our request in writing. Some staff did not seem to listen to the question and kept repeating to us that people had to pay for care. Many of the staff we spoke to did not seem to even acknowledge that disabled people could have additional costs because of their disability.

Only one local authority, Edinburgh, told us they would routinely consider disability related expenditure in the assessment. Eight local authorities (Aberdeen, Argyll and Bute, Dumfries and Galloway, East Lothian, Falkirk, Perth and Kinross, Renfrewshire and the Borders) said they would consider it in exceptional circumstances. They could apply for a reduction in charges, or individuals could use the appeals process. Aberdeen City Council however disregard all of a person’s DLA - both care and mobility components - and two local authorities, North Ayrshire and Shetland, said they do not actually charge for non-residential care services at the moment.

Although COSLA guidance states that the mobility component of DLA should be disregarded in a financial assessment one local authority, West Dunbartonshire told us that they do not disregard anything. Clackmannanshire Council said that they disregarded the mobility component for care at home, but that they did take it into account for transport costs.

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February 2011

Twelve local authorities - Angus, Argyll and Bute, Clackmannanshire, East Ayrshire, East Lothian, Edinburgh, Highland, Renfrewshire, South Ayrshire, Stirling, Orkney Islands and the Western Isles - only takes a maximum of the middle rate of the care component of DLA into account regardless of whether an individual receives the highest rate.

Clackmannanshire’s charging policy states that the care component of DLA is a specific allowance paid for the provision of care and Falkirk and East Renfrewshire told us that DLA should be used for disability related expenditure.

We were told by Edinburgh City Council that the Advice Shop would be able to give us more information about the financial assessment and disability related expenditure. However, when we spoke to this agency they were surprised that we had been told this, although they were able to give us the contact details of the person to contact at the council. The council staff member told us that disability related expenditure can be recorded and then submitted to the council who will then decide whether it will be considered.

West Lothian Council also told us to contact the Advice Shop in Bathgate as the social work department did not carry out financial assessments. However when we spoke to the Advice shop they were adamant that this is not their role. It would be very frustrating for a disabled person to go through what we did – being passed between different agencies and given conflicting information.

To date we have not been able to get information from three local authorities: Inverclyde, Moray and West Lothian.

Lillian’s story

Following a community care assessment, Lillian was told by her local authority that they did not have the resource to meet her identified needs and her name was placed on a list of people with unmet needs. 

She decided to consider using Direct Payments to allow her to employ a personal assistant, however she wanted to know what contributions she would be expected to make towards this care package. 

She was asked to complete a form with details of her finances and told that there had been recent changes to the form relating to disability related expenditure.  She asked for a copy of the council’s policy about the financial assessment and guidance about what was meant by disability related expenditure, however to date the council have been unable to explain this to her or provide a copy of their policy.

Impact on disabled people

COSLA guidance states that local authorities are required to ensure their charging policies are reasonable. There are a number of ways of assessing this; charging policies should ensure an individual has a reasonable quality of life after costs of their care and extra expenses from disability are met. If local authorities don’t even consider disability related expenditure, how can they know that a person will have a reasonable quality of life?

Although there is conclusive evidence that the living standards of disabled people are affected by extra expenses arising from their disability, it appears that 81% of Scottish local authorities do not acknowledge these extra costs. The guidance also suggests reasonableness should be based on an individual’s capacity to contribute to the cost of the service and a charging policy will make reasonable assumptions of an individual’s income and unavoidable demands on that income.

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The guidance goes further by explicitly stating that disability related expenditure should be considered in order to ensure a person is left with enough money so as to have a reasonable quality of life. It does not say that an individual has to show they will suffer, or are suffering hardship, or that their circumstances are exceptional.

Furthermore, the guidance firmly places the responsibility of ensuring their policy is reasonable onto the local authority. Local authorities therefore need to have a sound knowledge of the extra costs of disability and how the social security system makes provision for this.

Our findings indicate that local authorities in Scotland do not even acknowledge or recognise that disabled people can have extra costs because of their disability and that DLA will not always cover these extra costs.

Conclusion

It is clear that care funding arrangements of the majority of Scottish local authorities are being propped up by disability benefits such as DLA. The vast majority of local authorities in Scotland charge disabled people too much for essential services because they do not take account of their disability related expenditure. The only council found to consider disability related expenditure, the City of Edinburgh Council, takes into account only a very small proportion of disabled peoples’ extra costs of living.

Of the other 25 local authorities who said they took the care component of DLA into account in the financial assessment, not one said they would routinely take disability related expenditure into account. How can it be reasonable to include disability benefits awarded to individuals because they have extra costs related to their disability and then not take account of these costs?

Although local authorities do not have to charge for services and can consider disability related expenditure when working out what someone has to pay, the reality is

that this rarely happens.

To us it is clear that not considering extra costs or only taking exceptional costs into account is not reasonable.

Scottish local authorities reliance on disability benefits to subsidise the cost of care could be badly exposed if changes proposed in the public consultation on DLA reform are introduced (see Appendix 3). These include stricter assessment criteria, the removal of automatic entitlement to the benefit for those with permanent conditions and the reduction of benefit for those with equipment and adaptations that reduce the impact of the disability on them.

Capability is calling on COLSA to update its guidance to reflect English best practice in order that the people who have the highest support needs in our society are not being penalised for it.

Over the coming months, Capability will be encouraging disabled people across Scotland to let local authorities know about the added costs they are struggling to cover. It is essential that local authorities fulfil their duty and do not force disabled people to pay charges which they just can’t afford. This is particularly vital given the proposed changes to DLA and the Independent Living Fund (see appendix 4) which could leave many disabled people in poverty and struggling to do the everyday things that many people take for granted.

References

1. www.research.dwp.gov.uk/asd/asd5/WP21.pdf

2. www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4117931.pdf

3. www.cosla.gov.uk/index.asp?leftId=10001D361-11001461&rightId=10001D361-11001015

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Local Authority Charge for services

Routinely consider DRE

Consider DRE in exceptional Circumstances

Disregard DLA Mobility

Disregard DLA care

Aberdeen yes No yes yes yes

Aberdeenshire yes no no yes no

Angus yes no no yes no

Argyll&Bute yes no yes yes no

Clackmannanshire yes no no yes no

Dumfries&Galloway yes no yes yes no

Dundee yes no no yes no

East Ayrshire yes no no yes no

East Dunbartonshire yes no no yes no

East Lothian yes no yes yes no

East Renfrewshire yes no no yes no

Edinburgh yes yes yes yes no

Falkirk yes no yes yes no

Fife yes no no yes no

Appendixes

February 2011

Appendix 1

The table below shows the breakdown of findings from local authorities.

DRE = Disability related expenditure

* = No information was received from the local authority

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Glasgow yes no no yes no

Highland yes no no yes no

Inverclyde * * * * *

Midlothian yes no no yes no

Moray * * * * *

North Ayrshire no n/a n/a n/a n/a

North Lanarkshire yes no no yes no

Perth&Kinross yes no yes yes no

Renfrewshire yes no yes yes no

Borders yes no no yes no

South Ayrshire yes no no yes no

South Lanarkshire yes no no yes no

Stirling yes no no yes no

West Dunbartonshire yes no no no no

West Lothian * * * * *

Orkney yes no no yes no

Shetland no n/a n/a n/a n/a

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Appendix 4

The Independent Living Fund

The Independent Living Fund (ILF) is a trust which operates under the responsibility of the Department for Work and Pensions. It provides cash payments to fund personal care and support for people with high support needs to supplement the support they receive from local authorities. The ILF enables recipients to live at home rather than in a care home. The fund permanently closed to new members in June 2010 and will close completely in 2015. The UK Government plans to consult on supporting the ILF’s existing 21,000 users into a "social care system based on personalised budgets”.

About Capability Scotland

Capability Scotland campaigns with, and provides services to, disabled children and adults across Scotland, supporting them to achieve equality and have choice and control in their lives.

We work with disabled people, their families and carers, not only providing a range of modern, flexible services but also as a campaigning organisation, committed to using the influence we have to ensure disabled people achieve the same human and civil rights as the rest of society.

February 2011

Appendix 2

Disability Living Allowance

Disability Living Allowance (DLA) is a benefit for people under the age of 65 who have a long-term illness or disability, either physical or mental. It is paid in respect of two types of needs - one is care, the other is mobility. The benefit has two parts based upon these needs. One part is called the Care Component if you need help with personal care. The other part is called the Mobility Component if an individual needs help with getting about. An individual may qualify for a Care Component, Mobility Component, or both.

The Care Component is payable at three rates (lowest, middle and higher). The Mobility Component is payable at two rates (lower and higher).The component awarded will be the one appropriate the individuals needs. Neither component is payable until a person has needed help for three months. A person must also be expected to need help for at least a further six months.

An individuals’ entitlement to DLA is not usually affected by their finances, savings, or by any other income that they may be getting from work, other benefits, etc.

Appendix 3

The proposed changes to DLA

The UK Government announced in June 2010 that disability living allowance was to be reformed. The Government say there has been a 30% increase in the number of people claiming DLA in the past 10 years and they want to make a 20% cut in expenditure. Plans include a new medical test and the introduction of a new benefit: Personal Independence Payment (PIP). Consultation on these changes began in December 2010 and ends on 14 February 2011.

Further information

This report was compiled by Capability Scotland’s Research, Advice and Policy team. For further information about the report and reference details, please call 0131 347 1052.