Money and Legal Matters 8 - Community care
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What is community care?
Community care assessment
Carer's assessment
Getting services
Legal rights to services
Free personal care
Financial assessment
Direct payments
If circumstances change
If you are not satisfied
Advocacy and representation
Summary
Community care provides services and support to help people affected by dementia live as independently as possible in their own house, or in a care home if they can no longer cope at home.
The social work department of your local authority is responsible for coordinating these services and making sure they are provided. However, single shared assessment means that a person who needs community care services no longer has to have several assessments from different agencies such as social work and the NHS. Usually, the assessment is carried out by a social worker, health or housing professional.
To get help with caring for the person with dementia, contact the social work department and ask for assessments for him or her and for yourself as a carer, or ask the family doctor or GP to make a referral for you.
In some areas there may be a waiting list for assessments. If the situation is urgent, ask for an emergency assessment.
The person with dementia has a right to a community care assessment. The social work department has a legal duty to assess someone if they think the person is vulnerable. Anyone can ask for someone to be assessed.
To assess the person with dementia, the assessor (a social worker or other professional) will talk to him or her and to the carer, the doctor and anyone else who has relevant information. The assessor will produce a written assessment of the person’s needs. The person has the right to have a copy of this, and usually the carer will be able to see it too. Keep a record of the assessor’s name, contact address and telephone number.
Carers who are ‘providing a substantial amount of care on a regular basis’, including those under 16, have the right to an assessment. This is to ensure that proper recognition is given to the role of carers, to see that they are listened to and consulted, and that they are given the support needed to help care for a relative or friend at home. The local authority must take the carer’s view into account when providing services. Until September 2002, carers only had the right to be assessed at the same time as the person they care for, but after this date, the Community Care and Health (Scotland) Act 2002 gave carers the right to an assessment independently of the person they care for. The local authority must notify carers of this.
You do not have to be living with the person you care for to qualify.
Unfortunately, a carer’s assessment does not guarantee services, but local authorities must take the results of the assessment into account when deciding what services could support you and the person you care for.
Your carer’s assessment should include looking at your other commitments, such as your job or family, and at your physical, emotional and mental health. More information and advice on how to prepare for your carer’s assessment is available from Carers Scotland (see Further help).
There should be a written report of your assessment, signed by you and the assessor. You have a right to a copy.
Alzheimer Scotland has an information sheet with more information about community care and assessments.
After the assessment, the social worker (usually) will look at how to meet the person’s needs. If the needs are complicated, the person might get a care manager, who will put together a ‘package of care’. This might include a range of services from different sources. Otherwise, the social worker will arrange to provide services for the person.
Usually, the social worker will give the person a care plan which lists the services he or she will get. As the carer, you should be given a copy of the care plan too. If the person has very complex needs the care programme approach may be used. This should make sure that health and social work agencies work together and reassess the situation when necessary.
The social worker should tell you about any charges for the services before arranging them (see Financial assessment, below).
You and the person with dementia do not have to take the services offered if you don’t want to.
The social work department is not legally obliged to give services even if the person needs them, unless it is one of the services they have a duty to provide. The social work department must assess the person’s needs under the Chronically Sick and Disabled Persons Act 1972 when they do a community care assessment. If the person is assessed as needing the services covered by the act the social work department must then provide them. It may make a charge for these services The services are:
- help at home
- leisure, recreational or educational facilities (for example, day care)
- transport to local authority or voluntary services
- home adaptations for safety, comfort or convenience
- holidays
- meals
- a telephone.
The social work department must not argue it does not have the money. However, the social work department can change its eligibility criteria; for example, it may tighten them because of lack of resources. It can then reassess someone against the new criteria, which could result in withdrawing services. Most of the cases which have decided the rules have been in England, and have not yet been tested in Scotland; and some cases are still in progress. If the person with dementia is assessed as needing any of these services but is refused them, seek up-to-date advice from the Dementia Helpline or a solicitor.
The social work department is also legally obliged to provide aftercare services to people with dementia leaving hospital. One month’s care in the person’s own home should be provided free of charge. This includes personal and non-personal care.
Personal care at home for people over 65 is free for those assessed as needing it. But they have to pay for other, non-personal, care services, such as day care, lunch clubs, meals on wheels and community alarms. The social work department financially assesses clients to work out how much they can afford to pay.
Alzheimer Scotland has an information sheet with more information about free personal care.
What counts as personal care?
Personal care includes help with:
- personal assistance - eg help with dressing, surgical appliances, getting up & going to bed, using a hoist
- personal hygiene - eg bathing, washing hair, shaving, oral hygiene, nail care
- continence management - eg toileting, catheter/stoma care, skin care, extra laundry, bed changing
- food and diet - eg help with eating, special diets, meal services, preparing specialist meals, assistance with the preparation of food
- problems of immobility as they affect personal care, and help with moving about indoors
- behaviour management and psychological support, including reminding and safety devices
- simple treatments - eg help with eye drops, creams and lotions, simple dressings, oxygen therapy.
The social work department may charge the person (but not his or her family or carer) for the services they arrange. This only applies to services other than personal care - for example day care, community alarms or meals on wheels. They will do a financial assessment of the person, but they should only do this after they have assessed what he or she needs.
The amount the person is asked to pay should depend on what he or she can afford, taking into account what he or she needs to meet everyday costs and any extra costs because of disability. Charging levels and financial assessment procedures vary between different local authorities.
If the person refuses to pay
If the social work department has agreed to provide a service they cannot withdraw it just because the person refuses to pay. But if the person does not pay he or she will run up a debt and the social work department may go to court to try to recover the money. Seek advice if this happens.
Contributions from spouses or civil partners
Some councils ask the person's husband, wife or civil partner to contribute towards the cost of respite care, especially when regular respite is planned. This is because married couples and civil partners are legally obliged to maintain each other. But they do not have the power to ask the carer about his or her financial circumstances. If you are asked to contribute, you can agree to pay if you think the amount is reasonable. If you refuse to pay, the local authority would have to consider whether it is worth going to court to set an amount of maintenance. They cannot refuse the person a service he or she is assessed as needing because you don't pay.
Direct payments are a way of giving people who need community care services more choice and control over their quality of life. Direct payments can be made to people who need services, instead of the local authority arranging services for them. This means that the person can employ care staff or buy the services they want (from voluntary organisations or private companies).
Every local authority has, by law, a direct payments scheme for adults with care needs. A person with a diagnosis of dementia, who is in the early stages of the illness, may wish and be able to manage a direct payment. He or she may be able to continue to do so for some time, with assistance. However, as the illness advances, he or she will eventually be unable to manage and the direct payment would normally be stopped and the social work department would take over making the arrangements and paying for services.
If the person with dementia, while he or she was still able, has appointed a welfare and financial attorney, the attorney can make decisions on his or her behalf. Attorneys can be given a range of powers and, in most cases, the powers granted would probably make it possible to manage direct payments, and the Office of the Public Guardian states that powers of attorney would not have to list this specifically. If the welfare and financial powers of attorney are held by different people, they may still be able to manage the person’s direct payments together.
Where the illness has progressed too far for the person with dementia to appoint an attorney, the carer can apply to the sheriff court to be appointed welfare and financial guardian. The powers requested by the guardian could include the specific power to manage direct payments.
If you are interested in a direct payment, ask your local authority about the scheme and what help they can provide to help people manage their direct payments. The local authority should pay enough to meet a person’s assessed needs, including any legal responsibilities he or she may have as an employer. They will also do a financial assessment, in the same way as for other services, and you may have to pay a contribution.
If you decide that you do want to receive a direct payment or you want more time to consider, you should not be left without the services you need. You may need to have services arranged by the social work department until you are able to put your own services in place.
A direct payment can be used in any way as long as it is used to meet the person’s assessed needs. However, direct payment cannot be used to employ a spouse, partner or close relative who lives in the same household as the person receiving the payment; nor can it be used to pay for services which the National Health Service has a duty to provide.
Alzheimer Scotland has an information sheet on direct payments .
If you need additional help and support, or you no longer feel able or willing to continue caring, ask the social work department for a review of your situation.
If you do not agree with the assessment or with the services provided, you have a right to ask the social work department for a review. They will look at the case again.
If you are still not satisfied, you can make a complaint. The social work department must give you information on their complaints procedure.
If after this you still feel that the social work department have acted unreasonably, it may be possible to make a legal challenge. You should seek legal advice. See Further help.
Government guidance to local authorities says that some older and disabled people may require help from an independent person, or advocate, to represent their interests. In many areas there are advocacy projects, often set up by voluntary organisations, which can provide this help.
The Scottish Independent Advocacy Alliance has produced a directory of advocacy organisations in Scotland.
Advocates can play an important role in determining an individual’s wishes and feelings by spending time with the person and establishing ways of communicating with the person. An independent advocate with no links to any service providers involved will be able to discuss any options available to the person and may be able to discover whether the individual is willing to accept services or other interventions being proposed.
The Mental Health (Care and Treatment) Act 2003 gives every person with a mental disorder a right of access to independent advocacy. This right to access advocacy applies to all mental health service users, not just to people who are subject to powers under the new Act. See Mental Health (Care and Treatment) Act 2003, chapter five.
The person with dementia has a right to a community care assessment from, usually, the social work department.
Carers who provide a ‘substantial’ amount of care have the right to a carer’s assessment.
The social worker or other professional will give the person a care plan which lists the services he or she will get.
Personal care at home for people over 65 is free, for those assessed as needing it. But they will still have to pay for other, non-personal care services.
The person may have legal rights to some services.
The social work department may charge the person (but not his or her family or carer) for the services they arrange.
The amount the person is asked to pay should depend on what he or she can afford.
Dementia - Money and Legal Matters: index page
Useful links related to this chapter:
Alzheimer Scotland guide to free personal and nursing care
Alzheimer Scotland information sheet about direct payments
Alzheimer Scotland information sheet about community care and assessments
Alzheimer Scotland information sheet about making a complaint
Directory of advocacy organisations in Scotland
Freephone 0808 808 3000