A positive choice: How to arrange long-stay care

Once you have decided to find out about long-stay care, you will want to start thinking about how to arrange it and how to pay for it. This section covers community care assessment, free personal and nursing care arrangements and financial assessment.

Community care assessment

Everyone who needs care is legally entitled to a community care assessment. The assessment will show what kind of care would best meet the person’s needs. Carers also have the right to ask for an assessment of their own. This will look at how you are coping with caring for the person with dementia, and how able you are to go on caring. You may need extra resources to help you in your caring role, and the person with dementia may need other services. The assessment may result in more services, to help you go on caring at home, or it may show that a care home is now the best way forward.

It is a good idea to ask for a community care assessment if you are considering long-stay care, even if the person may not yet need help to pay the care home’s fees. Although it is possible to choose and pay for a home privately, Alzheimer Scotland strongly advises people to involve the social work department and get an assessment to make sure that the person gets the right care. The Scottish Executive says that social work departments should advise people on the right care and on what is available, even if they will be paying privately.

An assessment is not just advisable but necessary for the person to be able to claim his or her free personal or nursing care allowance. It is also essential for people who may need help paying fees now or in the future. Most people with dementia will not be able to pay all of their care home fees, unless they have a substantial income. Fees are usually several hundred pounds a week. If the social work department does not agree to the person’s placement, they may not top up the fees in the future, and the person may have to move. So it is better to have an assessment right at the start.

The social work department will arrange a community care assessment. There may be a waiting list so the person may not be assessed right away. However, the social work department has a legal duty to assess someone within a ‘reasonable’ time. What is reasonable will be different in each case. If you feel the person needs long-stay care urgently, perhaps because of a change in circumstances, make this clear to the social work department. It is best to do this in writing. If the waiting time does not seem reasonable, seek legal advice. You may be able to take legal action.

A community care assessment simply involves talking to a social worker, care manager or another professional authorised to do assessments. He or she will ask about the needs of the person that you care for. He or she will also talk to others involved with the person’s care, such as doctors, nurses or occupational therapists. It is a good idea before the assessment to write down any problems and any help that you think is needed. Have your notes with you to make sure you don’t forget anything – but if you do, write to or phone the assessor to get it added in.

It is important to make sure that the views and wishes of the person with dementia are fully taken into account in the assessment. Often people with dementia need someone to advocate for them; this could be a member of the family or an independent advocate from an advocacy service (call the Dementia Helpline to find out about advocacy services).

If the person is assessed as needing long stay care, the local authority may make the arrangements, or you can do it yourself. The local authority must make the arrangements if there is no-one else who can do it. Guidance from the Scottish Executive says that the local authority should also be prepared to make the arrangements for someone who is taking up free personal or nursing care payments or who is making an arrangement to defer payment so that their home does not need to be sold. They can also make the arrangements in other circumstances if they choose to.

NHS care

Where someone is in hospital, he or she should only be discharged if the services the person needs have been assessed and arranged. Some people will be able to return to their own home, with whatever support services are necessary. Scottish Executive guidance says that the social work department should provide aftercare services to people with dementia leaving hospital. Up to one month’s care in the person’s own home is free. Some people will be discharged to care homes paid for from their own resources, with means-tested help from the local authority as described below. Some people, who have particularly complex needs, will be assessed as needing NHS continuing health care. The decision is made by the person’s consultant.

If the person is assessed as needing NHS continuing care, the care may be provided within the NHS, or they may place the person in a care home. In this case, the NHS will pay for the person’s care.

If the person is to be discharged from hospital care and you feel he or she should not be discharged, you can ask for a review of this decision from the Director of Public Health of the local NHS Board. The hospital must tell you how to do this. You must ask for the review within 10 working days of when the person was told of the decision. The review should be completed within 14 days of you making the request.

If you are still not satisfied, you can request a second opinion from an independent consultant from another NHS Board area. You must ask for this within 10 days of receiving the result of the first review. The nominated consultant will review the clinical decision to discharge the person and will report his or her opinion within 25 days. This second opinion will be final, unless the person’s care needs have changed significantly.

Free personal and nursing care

Free personal and nursing care arrangements in Scotland came into effect in July 2002 under the Community Care and Health (Scotland) Act 2002. The arrangements apply to anyone paying all or part of his or her own fees.

Personal care in care homes is free to people over 65, provided they are assessed as needing it. Nursing care is free for people of any age living in care homes, provided they are assessed as needing it.

The local authority will pay any contribution for personal or nursing care direct to the care home, not to the resident.

• People over 65 who pay all their own fees and need personal care will get £145 per week, plus if they need nursing care an extra £65, making a total of £210 per week. If they are under 65 and need nursing care they will get £65 per week.

• People who pay some of their own fees will get a top up from the council towards their fees of at least these amounts.

Everyone paying all or some of their own fees will continue to pay the rest of their fees, covering accommodation etc.

People who get the payment for free personal care cannot continue to be paid Attendance Allowance or the care component of Disability Living Allowance after the first four weeks of their stay in the home. People who get the payment for free nursing care but not free personal care can still get Disability Living Allowance if they are paying all their own fees. The mobility component of Disability Living Allowance is not affected.

If you are told by your local authority that they have a waiting list and they will not pay the free personal or nursing care payment from the date the person moves into the care home, seek advice about how to challenge that decision. Your local Citizens Advice Bureau may help (address in the phone book); you may also use the local authority’s own complaints procedure.

Financial assessment

Local authorities are required, each year, to set maximum standard rates that they will pay towards care home fees. The local authority will carry out a financial assessment, or means test, to work out how much the local authority pays and how much the person with dementia pays towards these fees. The assessment is based only on the income and capital of the person going into the home, and his or her share in any joint resources. If you disagree with this assessment, you can make a complaint.

There is further detail on financial assessments in Age Concern Scotland’s Factsheet 10s: Local authority charging procedures for care homes. Call the Dementia Helpline on 0808 808 3000 or Age Concern on 0800 00 99 66 for a free copy. If you call Age Concern, make sure you ask for the Scottish version.

The purpose of the financial assessment is to see how much income and capital (savings and property) the person has. Income and capital will either: count in full, be partially disregarded, or completely disregarded. Once the local authority have worked out which parts of the person’s income and capital count, they will calculate the person’s contribution. The person must always be left with a personal expenses allowance. From April 2006 this is £19.60 a week. People over 65 receiving the savings credit of Pension Credit, or who have qualifying income above certain levels, will keep up to an extra £5.05 on top of this. This is in order to make sure people benefit if they have saved for their old age.

The person’s income, including pension and benefits, will be used towards the fees. But he or she is always left with a personal allowance. From April 2003 this is £17.50 a week. From 6 October 2003 some people over 65 receiving the new Pension Credit will keep up to an extra £4.50 on top of this, depending on their savings and income. This is in order to make sure people benefit if they have saved for their old age.

In some cases, for example where the person has a dependent left at home, the local authority may agree to leave the person a larger allowance.
The financial assessment looks at the income and at the savings and property of the person with dementia. If the person has more than the ‘upper limit’ (currently £20,000) in savings and property (see page 14), he or she will have to pay all the home fees until the savings come down to this level. If the person has between the upper limit and the ‘lower limit’ (currently £12,250), he or she will get some help towards the fees from the local authority. Below this level the person will get the full shortfall between his or her income and the fees paid by the local authority.

If the financial circumstances of the person with dementia change, the amount that he or she pays towards the cost of care may also need to change. Most local authorities will do an annual review. If you feel the person’s financial circumstances have changed, you can ask for a review of the financial assessment at any time. It is especially important to do this if the person’s savings have reduced to the upper limit, where he or she would qualify for help with the fees for the first time (£20,000) or when the person is between the upper limit and the lower limit (£12,250), where the person’s contribution should be reviewed every time there is a change of £250 in his or her capital.

Problems with financial assessments

In most places the system works fine, but in some areas, there can be difficulties. For example, in some local authorities there are long delays getting the bill, leaving people not knowing how much to pay toward the care home fees. If this happens, keep pushing the local authority. Ask the professionals involved, and the home, for advice on how much to pay or put aside in the meantime, so as not to get left with arrears that are hard to pay off.

If you think the person’s financial assessment is wrong, speak to the social work department to see if you can get it changed. If that doesn’t work, you can make a complaint to the social work department. They have a legal duty to have a complaints procedure and to tell you how to use it.

Income

People often become entitled to benefits when they move to a care home so it is a good idea to ask for a benefits check. This is especially true for someone with a spouse or partner. The local authority expects the person you care for to receive all the social security benefits he or she is entitled to, such as state retirement pension and Pension Credit. There is more information about this in the Money and legal issues section of the Alzheimer Scotland website.

They will also count private pensions, and certain other money received, as income. Some kinds of income are partly disregarded. For example, if the person going into long-stay care has an occupational pension, private pension or a retirement annuity contract, his or her spouse or civil partner (but not an unmarried partner) is entitled to keep half the amount. Where a partner who is not a spouse or a civil partner remains at home, the local authority can use their discretion to allow the person an increased personal expenses allowance so that he or she can support the partner remaining at home.

£10 a week of a War Widow’s or War Disablement Pension and £20 of certain charitable and voluntary payments – but no more than £20 of the two together – are disregarded. Some income is disregarded entirely, including Disability Living Allowance mobility component, the Christmas bonus, War Widow’s Special Payments and some charitable and voluntary payments.

If the person has savings or property valued between £12,250 and £20,000, the local authority will assume a standard amount of income from this, instead of the actual interest he or she gets.

Savings and property

The person’s capital is his or her savings, plus the value of property such as buildings or land, premium bonds and stocks and shares. The local authority will not take into account the value of personal possessions, the surrender value of a life insurance policy or certain other items.

If the person you care for has more than the upper limit (£20,000) in capital he or she will be treated as self funding and will pay the full fees less any free personal or nursing care payments they are entitled to. Once the capital is reduced below £20,000, the person should be entitled to help with the fees from the local authority. Tell the local authority some months before the capital reaches £20,000 to give them time to calculate any contribution they should be making once the capital reaches that level.

If the person has between £12,250 and £20,000, the local authority will treat them as having an extra £1 a week income for every £250 or part of £250 between £12,250 and £20,000. Savings of below £12,250 are not counted at all. Ask for a review of the financial assessment each time the person’s savings reduce to the next £250. He or she may be entitled to more financial support.

Joint capital

The person is counted as owning an equal part of any joint capital. See below for how a house is treated.. Because it is always half the amount of a bank account that is counted, it may be sensible to divide it equally into two separate accounts. That way, if the savings of the person in the care home decrease faster than the other person’s, he or she will get the full extra support.

The house

If the person owns a house, its value can only be counted by the council if the stay in the care home is seen as permanent. If it is, the value of the house is then disregarded for the first 12 weeks of the person’s residence. You can ask the local authority to do this at any time up to 12 weeks after the person becomes a permanent resident. If the house is on the market, its value can also be disregarded for up to 26 weeks for Income Support or Pension Credit purposes.

If the person with dementia lived alone and owned his or her house before entering the care home, the value of the house will be counted as capital, less any mortgage and 10% of the value to cover the cost of selling it. If losing the house is a concern, the local authority can agree a ‘deferred payment’, where the council pays all or part of the person’s share of the care home fees until the person dies, and then reclaims the money from his or her estate. This is a legal agreement, which includes a ‘standard security’ over the home (just as when a mortgage company lends money) to cover the deferred amount. It is interest free until 56 days after the person dies.
Someone is only eligible for deferred payment if he or she:

• has been assessed as needing care in a care home
• has capital at or below £12,250, not counting his or her home
• would not normally have his or her home disregarded (see next section)
• does not wish to sell the property or is unable to sell it quickly enough to pay the care fees
• can grant the local authority a standard security against his or her home.

It is likely that a person with dementia will lack the capacity to enter into such an agreement; however, someone with appropriate power of attorney, or who has the relevant authority through a guardianship or intervention order, could enter the agreement on the person’s behalf.

The council can’t force the person to sell the house. But if it doesn’t agree a deferred payment, it can put a ‘charging order’ on the house, which means whenever the house is sold, the council will get repaid. Seek legal advice if this happens.

When the value of the house is not counted

The value of the house must not be counted if someone is still living there who is:

• the spouse, civil partner or cohabiting partner of either sex of the person with dementia, or
• a relative who is aged 60 or over, or
• a relative who is disabled or incapacitated.
• a relative who is under 16 and is a child whom the person in care is liable to maintain.

If someone else still lives there, the local authority has discretionary powers to ignore the value of the house if they think it is reasonable to do so. For example, this could apply to a carer or relative who does not come under one of the categories above. In practice, this varies between local authorities. Some are much more strict about taking the value of the person's home into account than others. The local authority will have a general policy. Ask to see it. However, they must treat each case on its merits. If they do not, court action may be possible. If you are living in the home of the person with dementia whom you have been caring for and you are not over 60, or incapacitated or his or her spouse or partner, get advice from the Citizens Advice Bureau, the Dementia Helpline or a solicitor.

If the person owns a part share in the house, this should be counted at the market value if sold on its own, not as a share of the value of the whole house. The only realistic market for a part share in a house is likely to be the other joint owner or owners. If they are unable or unwilling to buy the person’s share then the market value could be nil. For example, if a person jointly owns a house with someone else then they are regarded as owning half the house. The assessment should be based on how much might be raised by putting half of a house on the market – it should not be based on the value of the house divided by two.

If the house needs to be sold

If the house needs to be sold (perhaps because it is lying empty) but the person is not mentally capable of agreeing, no-one has financial power of attorney and there is no financial guardian or intervener, then no one has the power to sell it. In this case, if no one else is applying, the local authority has a duty to apply to court for an intervention order or to get a financial guardian appointed. If they do not do this, seek legal advice.

Renting out the house

It may be possible to rent out the person’s home and use the income toward the care home fees. Seek legal advice if you are considering this. If the person’s home is subject to a deferred payment agreement, any income they receive from renting it out will count in full as income in the financial assessment.

Tenants

If the person was a tenant, the rights of someone else who lives in the house depend on how closely he or she is related to the person, how long he or she lived in the home and whether it is rented from a public or private landlord. You should get advice if you want to carry on living in the home and the landlord is not willing to let you do so.

Financial responsibilities of the spouse or civil partner

When doing the means test, the local authority can only assess the person with dementia. They cannot consider joint resources if that person is married or has a civil or cohabiting partner.

However, married couples and civil partners (but not cohabiting couples) have a legal duty to maintain each other. This is known as being a ‘liable relative’. This means that where a local authority is contributing to a person’s care home costs, they could ask the spouse or civil partner to pay all or part of the local authority’s contribution. The Scottish Executive has announced that it intends to repeal the ‘liable relatives’ rule and has made provisions in the Adult Support and Protection Bill which is expected to become law late in 2007. In the meantime the Scottish Executive has asked local authorities to exercise discretion not to apply this rule. Until the rules change some local authorities may still ask to look at the finances of the spouse or civil partner.

If you do give the local authority information on your finances, they will then decide if it is reasonable to ask you to contribute towards the cost of your husband’s, wife’s or civil partner’s care. They may ask you to agree an amount you can afford. There are no rules about how much this should be or how much they should leave a spouse or civil partner to live on. However, government guidance says that they should not necessarily expect a spouse or civil partner to live at income support level.

However, the local authority does not have a right to look at the spouse’s or civil partner’s finances. If you are the spouse or civil partner of someone going into long-stay care, you can refuse to give any details of your own finances. The local authority would then have to consider going to court to ask for an amount of maintenance to be set. If they do, you should seek legal advice.

Deprivation of assets

If the local authority believes that the person with dementia has given away his or her house, savings or other property, excluding personal possessions, so as not to pay so much for long-stay care, they may treat the person as still being in possession of the value of the capital; this is known as “notional capital”. Even if avoiding fees was not the only reason, the local authority can still count the value. They can decide to do this even if it was given away more than six months ago; there is no set time limit. Local authorities have different policies on how far back they look to see if someone has given away property or savings.

If the local authority decides that the person is in possession of notional capital, he or she may have not have sufficient funds to pay the care home fees. If this is the case, local authorities have a legal responsibility to provide the care that they have assessed the person as needing.

In one House of Lords judgement, a Scottish local authority decided it did not have a duty to provide accommodation in a care home to a woman who, they decided, had intentionally deprived herself of capital by transferring ownership of her house to her sons, and was therefore in possession of notional capital of over the capital limit. The House of Lords decided that was wrong and that local authorities must provide the care they have assessed the person as requiring and that the provision of the services is not related to the person’s ability to pay.

If the person gave the money or property away in the last six months before moving into a care home, the local authority can treat the person who received it as liable to pay towards the care home fees. They can recover the difference between what the care home resident can now pay and what he or she is assessed to pay counting the capital that was transferred, up to the total value of the transfer or gift. However, if the transfer took place more than six months before the person moved to the care home, the local authority has no power to treat the person who received the asset as liable to contribute to the fees. Seek advice if the local authority tells you otherwise.

The Department for Work and Pensions will also consider whether someone has deprived him or herself of assets in order to decide if they qualify for benefits.

Extra expenses

When you visit homes, check whether there are extra costs not included in the fee quoted to the local authority. These may include things like hairdressing. The person shouldn't be expected to pay for incontinence supplies or any other medical needs. These should be provided by the NHS to the home or through the person's GP. Chiropody is also available free from the NHS if the person needs it.

If extras are not included then the person with dementia may be expected to pay for them so it is worth checking this in advance.

Financial advice

There are a number of companies offering financial advice on planning for care home fees. They advise on, or sell, long stay care insurance and other financial products. If you decide to use a company to help you plan, make sure:

• you take expert independent financial advice
• you understand what the company is offering and what their fee is before signing up
• the company is properly registered with a regulatory body.