Many autistic people have informal support from parents, siblings, another relative or friend. The people offering this support are sometimes referred to as informal carers or unpaid carers. When we use the term ‘carer’ on this page, we are referring to these carers rather than professional care workers who do care and support work as their job.

Carers often give significant support to the person they support. This can sometimes lead to the carer needing support themselves.
Many carers are entitled to have their needs assessed by social services and support put in place to meet eligible needs. The team who carries out the assessment is usually the team who is offering support to the cared for person. A carers assessment is free and anyone over 18 can ask to have one.

Sometimes carers assessments are carried out by outside organisations such as Carers Centres. Carers assessments are often carried out at the same time as the person you are caring for has their needs assessed but they can also be done separately if you prefer. They may be called a joint assessment if they are part of the cared for person’s needs assessment/community care assessment. Carers for children often have their needs assessed as part of a family assessment.

Social services is the department within your local authority which is most likely to be responsible for funding any extra support a person with disabilities and/or a carer needs. Sometimes it is the mental health team who do this. 

Requesting a carer’s assessment

If the child or adult you care for already receives social services support, contact their social worker/care manager and request that your needs are assessed as a carer.

If the person you care for doesn’t have an allocated, named worker at the moment, contact the duty worker/duty team for the department who co-ordinates their support. The contact details should be on the person’s care/support plan. If not ring the general local authority children’s or adult’s social services number to find out who you should contact.

You may wish to follow up any telephone requests for a Carers Assessment with an email or a letter. If this isn’t possible then it would be useful to write down the name of the person you spoke to when you requested the assessment and the date you spoke to them.

If the person that you care for doesn’t already have social services involvement, you may wish to request that their needs are assessed too. We have template letters to request that the cared for person’s needs are assessed. If you would like your needs to be assessed as a carer at the same time you may wish to add in a sentence such as ‘please assess the needs of my carer (insert name) at the same time’.

Things to think about before your carer’s assessment

It is important to be honest about your needs and the amount of care and support you give. Whether you care for an autistic adult or child, consider the following points when your needs are assessed and discuss these with the assesser if relevant:

• How much prompting do you give the person that you care for? Make a list of all the prompting that you are required to do.
• If you are a carer for a child, think about what tasks the child needs your support with that they would be likely to be able to complete independently if they were not autistic. For example, do you need to help your older child to bath and clean their teeth? Do you need to stay with your older child at activities due to their anxiety?
• Is your sleep affected due to any night time behaviours the person you care for has?
• Do you feel willing and able to continue providing as much care as you are?
• Does the person you care for have any distressed behaviour? If so what impact does this have on you and other family members
• Do you have proper breaks? For example, if there is already support in place such as a worker coming to the house, are you able to go out and spend this time as you would like or do you feel you still need to stay at home ‘in case something happens’?
• Do you have family/friends who can offer practical or emotional support or are you managing your role as a carer on your own
• Are you able to manage your own health needs?
• Has your physical or mental health deteriorated due to caring?
• Are you able to work or enrol in education or training (if you would like to)?

Carers rights and local authority responsibilities

Carers of adults

Under the Care Act 2014, carers of adults have been given the same rights as those they care for – the right to an assessment, a care and support plan if they have eligible needs and a personal budget.

You can have a carers assessment even if the local authority has assessed the person you care for as not being eligible for services or if the person you care for doesn’t want their needs assessed.

Carers of children

Parent carers of disabled children

A parent carer is someone over 18 who provides care to a disabled child for whom they have parental responsibility. The Children and Families Act 2014 amends the Children Act 1989 requiring local councils to assess parent carers on the appearance of need or where an assessment is requested by the parent. This is called a parent carers needs assessment. This assessment can be combined with one for the disabled child, and could be carried out by the same person at the same time.

The local council must also be satisfied that the child and their family come within the scope of the Children's Act 1989, i.e. that the child is a ‘child in need’. (All children with a disability are regarded as children in Need under the Children Act 1989.)

The local council must then assess:

• whether a parent carer has needs for support and what those needs are
• whether it is appropriate for the parent to provide, or continue to provide, care for the disabled child, in the light of the parent's needs for support, other needs and wishes

Parent carers' needs assessment must also consider:

• the wellbeing of the parent carer
• the need to safeguard and promote the welfare of the child cared for, and any other child for whom the parent carer has parental responsibility (the above information is from the Carers UK website)

Non-parent carers of disabled children

A non-parent carer of a disabled child is someone over 18 who provides care to a disabled child for whom they do not have parental responsibility (such as a grandparent). Such carers do not have the same right to an assessment as parent carers.

The Government has said it will preserve the right to assessments for this group of carers by not repealing the relevant parts of the Carers (Recognition and Services) Act 1995. However, this means that such carers will still have to request a carer's assessment and will have to show they are providing, or intend to provide, regular and substantial care (from the Carers UK website).

Making a complaint

Carers who have been refused an assessment or service or are unhappy with the carers assessment or treatment they have received from their local authority or the NHS can make a complaint. 

Making decisions

Once your child reaches adulthood, you are no longer entitled to make decisions on their behalf. However, they may need support to make decisions, and if they lack mental capacity, they might need you or someone else to manage their affairs. 

Next steps

Our Autism Services Directory has details of  local and national organisations to help autistic people and their families.

Carers UK has lots of information for carers, including information on assessments, support available for carers and Carers Allowance.

Carers Trust has a UK wide network to support carers in their homes, as well as specialist services.

You can find out more about carers assessments on the NHS website.

Visit the My Adult - Still My Child website, aimed at those new to making Best Interest Decisions and especially those caring for a young person in transition to adult services.

Mencap has information on the Mental Capacity Act and supporting people to make decisions.

Contact a Family has information for families with disabled children.

The Respite Association provides short term assistance in the funding of respite care to allow regular carers to take a break.