Assessments

If you're looking after someone on a 'regular' and 'substantial' basis, you are entitled to have an assessment of your own. This is called a carer’s assessment.

There is no legal definition of what regular and substantial means. Social services have been given guidance by the Department of Health that suggests that it depends on your particular circumstances, the type of care you deliver, and the effect it has on your life. It is not just a question of how many hours a week you spend looking after someone but also the overall impact on your life.

What regular and substantial care can be

If you're looking after a disabled child or someone with a long-term health problem, the impact on your life can be very large because of the long-term commitment.

If you're looking after someone with mental health or neurological problems, the time you spend looking after them may be intermittent, but it could be very stressful for you because you may be waiting for, or trying to prevent, the next crisis.

If you combine your caring role with commitments to family members or paid employment, that too can be very stressful.

Social services should not come to a conclusion about how regular or substantial the care you provide is without first giving serious consideration to the care you provide.

If there is uncertainty about the level of care you provide and the impact it has on you, you should argue that if social services carried out the assessment it would help make things clear.

It can often be the case that more than one carer can provide regular and substantial care for the same person, particularly if that person needs a great deal of care.

You're also entitled to have an assessment if you're intending to provide regular and substantial care to someone even if you have not started looking after them yet.

Example

Jenny has a brother who is an alcoholic. She doesn't see him every week, partly because she is working and partly because there are times when he refuses to see anyone. From time to time, his health deteriorates and she becomes very involved in his care – making sure he eats and sleeps regularly and keeps himself clean.

She never knows when these crises are going to occur and is often extremely anxious wondering how he is and whether he needs her help. She hasn't been away on holiday for a long time in case she is needed. The care that she provides is regular and substantial.

If you are a parent of a disabled child aged under 18, your child can be assessed by social services under law relating to the needs of children in the Children Act.

You will also be assessed as part of that process because social services will look at the needs of the family as a whole. This is often referred to as a 'holistic' assessment.

The assessment should take into account detailed information about your family, including:

• the family’s background and culture,
• your own views and preferences, and
• the needs of any other children you have.

The assessment is not a test of your parenting skills but should be a sensitive look at any difficulties the family has as a whole, with a view to considering what support or services are needed.

A care plan should be drawn up that would include services to benefit both you and your disabled child. For example, there could be adaptations to the home, help with bathing or regular respite breaks to ensure that you get the rest you need.

You could also choose to have a direct payment so that you can buy in your own services for your child.

The carer’s needs in the assessment

You may find that the type of holistic assessment described above meets all your needs as a carer. If that is not the case, it is important to remember that you can still ask for a separate assessment of your own if you are providing care on a regular and substantial basis.

Government guidance tells social services that when they assess disabled children they should accept that their parents provide regular and substantial care.

Even if your child is living away from home, as long as you have regular contact you should still be eligible for a separate assessment.

Common questions

Is it true that I can't have a separate assessment?

If social services have failed to fully address your needs as a carer, you may need to insist upon having a separate carer’s assessment under the Carers (Recognition and Service) Act 1995 and the Carers and Disabled Children Act 2000.

Put your request in writing to social services. In your letter, you should point out which areas or issues to do with your own needs as a carer have not been dealt with during any assessment under the Children Acts. If they still refuse to carry out a separate assessment, you may want to consider making a complaint.

Will social services be sympathetic if I want a job?

Social services must take account of your wishes as far as paid work is concerned. There is no difference here just because you are a parent carer. They should not give you the impression that you have to stay home with your child if that is not what you want to do or are able to do.

Example

Angie and her husband care for their daughter Alice, who has cerebral palsy. Angie has been at home looking after her daughter on a full-time basis while her husband works, but now feels that she would like to get back to paid work.

The assessment that looked at Alice’s needs and the needs of the family as a whole did not give Angie a chance to discuss her particular wishes as far as paid employment is concerned. She asked for a separate carer’s assessment so that she could have this conversation and discuss in detail how she felt about her role as a carer and the practical consequences of her going back to paid work.

If you're looking after someone who has severe mental health problems, you may have additional rights to your own carer’s assessment. This would be the case if they are on a Care Programme Approach (CPA), which:

• Provides a way in which information, assessments and services can be delivered for people who have mental health problems.
• Gives those with more complex needs a care coordinator.
• Should include a comprehensive assessment of the needs of the person you're looking after. including any health, social, financial or housing problems.
• Aims to co-ordinate the contributions of all the different professionals (e.g. medical or social work) with whom the person you are looking after has contact.
• Should result in a care plan that should be reviewed to check that it still meets the needs of the person you're looking after.

Department of Health guidance says that if you provide regular and substantial care for a person on a CPA, you should have an annual assessment of your own needs as a carer, including any physical or mental health needs of your own. It also says that you should have your own written care plan that should include:

• Information about the mental health needs of the person you are looking after, including details of their treatment.
• Information about what would happen in an emergency.
• How your own physical and mental health needs will be met.
• Any advice you need on financial, employment or housing matters
• Arrangements for you to take a break and have social support.

The CPA process should recognise that you have an important role in caring for and supporting someone who has mental health problems You should be kept up to date and involved in the care plan for the person you're looking after. However, that will depend on the person agreeing to you having this information. In extreme cases, where your health or safety may be at risk, you should be given information whether or not the person you're looking after has agreed to that.

If you're looking after someone with mental health problems on a regular and substantial basis, you have a right in any case to have a carer’s assessment. This assessment can be carried out at a time and place of your own choosing. It does not have to take place in front of the person you're looking after and what you say to the social worker carrying out the assessment will be regarded as confidential.

You might have a carer's assessment if the person you care for has been to hospital. This is your right if you are providing someone with regular and substantial care.

However, you should not be put under pressure to accept a caring role, or to take on more responsibility if the person you look after will need more care after their hospital stay.

The person you look after should not be discharged from hospital until they're medically fit, their needs have been assessed, and any support that they're assessed as needing as been put in place. Only then is it safe for them to be discharged. You can find out more information about the hospital discharge process in Hospital discharge for carers.

You may be looking after someone who qualifies for NHS continuing care. If they receive continuing care, the NHS funds this care and it is free of charge to the person you are looking after. This is different to when care is provided by social services where the person receiving the services is assessed to see what financial contribution they should make towards those services.

NHS continuing care can be provided in any setting, including a care home, hospice or the person’s own home. If continuing care is provided in someone’s own home, social services still has a role to play. They may still have a duty to assess the person you are looking after (a community care assessment) and you should also be entitled to a carer’s assessment if you are providing regular and substantial care.

Example

Tony’s adult daughter has very severe brain damage. She lives at home with him and her care is funded by the NHS (a package of continuing care). Tony cares for his daughter on a regular and substantial basis and contacts social services to ask them to carry out his own carer’s assessment.

Legal duty of social services and the NHS

The law says that social services can ask another authority or the NHS to assist in planning services for both you and the person you are looking after. This could include social services asking the NHS to provide aids and adaptations which help you in your role as carer.

Those authorities or the NHS are expected to take such a request seriously and co-operate to ensure needs are met.

If there is a dispute between social services and the NHS (for example, about whether or not you can have a carer’s assessment) you may need advice. You could contact a local carers' centre or an advice agency or firm of solicitors specialising in community care law.