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 in Scotland

As a carer, you have the right to an assessment during the assessment of the person with disabilities, or to an assessment at any time of your ability to provide care. Your assessment must be given due regard in any assessment of the person being cared for and in any decision regarding the provision of services for that person.

Even when no request for an independent assessment has been made, a local authority must consider any substantial amount of care that you provide on a regular basis and seek your views before deciding what services are necessary. You should be fully involved in planning provision and your abilities to go on caring should be reflected in the care plan.

The Community Care & Health (Scotland) Act 2002 introduced the following:

• a duty on local authorities to inform carers of their right to an assessment
• a right for carers to have a separate assessment of their needs, regardless of whether or not the person for whom they care has requested or agreed to an assessment
• a right for carers of all ages to receive an assessment, including young carers

In 2018, the Carers (Scotland) Act 2016 came into force. The act aims to support the health and wellbeing of carers through a range of measures and means that local authorities have a duty to provide support to carers, based on the carer’s needs which meet the local eligibility criteria. 

The Act also means that adult carers are entitled to a specific adult carer support plan (ACSP) and young carers are entitled to a young carer statement (YCS). These are to identify their own needs. Local authorities are required to have an information and advice service for signposting things like carer’s rights and emergency care planning.

Carers of children in Scotland

Children (Scotland) Act assessments look at the needs of disabled children and their families as a whole. The assessment should consider all the help that the disabled child needs, the needs of any other children in the family (including any care provided by a young carer) and the help that you may need to care for your disabled child. If you feel that a Children (Scotland) Act assessment has not addressed the help that you need as a carer you can still ask for a separate carer’s assessment.

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 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 Scotland (part of Carers UK) has lots of information and downloadable factsheets for carers, including carers rights and information on adult carers support plans and young carers statements assessments.

You can find out more about care assessments on the Care Information Scotland website.

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

Shared Care Scotland has information about short breaks for carers.

Contact a Family has information for families with disabled children.