Many people on the autism spectrum 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’ in this document, 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. 

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. The mental health team are usually regarded as being under the NHS rather than social services. In Northern Ireland the Health and Social Care Trust (HSCT) are usually responsible for carrying out carers assessments. 

Requesting a carer’s assessment

If the person 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. Carers of autistic adults and children should consider the following points when their needs are assessed and discuss these with the assessor 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 didn’t have ASD. 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 challenging 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)?

The type of support that might be put in place

If you are found to be eligible for services, what is put in place could be anything that could help you to care for the person with disabilities or to have a break. It may take the form of:

  • physical help  - such as assistance in the home, help with gardening, help with laundry
  • other forms of support - such as trips/holidays, travel assistance, training, or short breaks (see below for more information about short breaks).
  • A direct payment so you can purchase agreed services or items yourself. 

A Direct payment is money given instead of services. The aim is to give more choice and control to the person receiving the money and more flexibility. For example some carers have used their direct payment to purchase driving lessons, pay for gym classes or to pay a friend or relative to look after the person they care for so they can have a break.

You can read more about direct payments on our Personal Budgets and Direct Payments page.

Carers UK also have information on direct payments including direct payments for carers.

Short breaks 

Short breaks, sometimes known as respite, allow you to take a break from your caring responsibilities. Many carers of autistic adults and children really value having some time to themselves when they aren’t required to focus on the needs of the person they care for. 

The person you care for may spend some time away from the home or you may spend time away, knowing that the person you care for is being looked after. The type of short breaks available vary significantly depending on the age of the person and the level of their needs. Services could include: 

  • home-based respite care - eg a sitting service for a few hours a week or a personal assistant to stay overnight 
  • family-based short term respite care - this is where a person with disabilities is linked with a family who they then go to stay with on a regular basis
  • centre-based short term residential care
  • after-school activities or youth clubs
  • a joint holiday.

A 2007 report, Aiming Higher for Disabled Children: Better Support for Families (2007) highlighted the importance of short breaks in reducing stress in families with children who have disabilities.

Following on from this report, local authorities in England and Wales have a duty to produce a short break statement. The statement should outline the short breaks/respite that are available to carers of children with disabilities and how to access them. Most local authorities publish this information on their website or you can ask children’s services to send you a copy.

Carers of adults in England 

From 1st April 2015 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 have 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.

The Carers UK website explains more about rights for carers of adults in England, the assessment process and what sort of support may be put in place

This link to the Frequently Asked Questions about the Care Act on the Carers UK website is also useful.

Carers of children in England

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, ie 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. (taken from the Carers UK website)

For more detail about the rights of carers of disabled children under 18 and young carers please see these links to the Carers UK website: 

Carers of children and adults in Wales

The Social Services and Wellbeing Act (Wales) 2014 came into force in April 2016. This gives carers for children and adults in Wales new rights. Carers now have the same rights as those they care for. 

Local authorities now have a duty to offer carers their own needs assessment and a legal duty to meet the eligible needs of carers following assessment.

The Social Services and Well-being (Wales) Act requires local councils to assess parent carers of children on the appearance of need or where an assessment is requested by the parent. This assessment can be combined with one for the disabled child, and could be carried out by the same person at the same time.

As a carer you are legally entitled to an assessment. An assessment should be offered as soon as it appears to a local council that you may have a need for support. Each local council from April should have an Information, Advice and Assistance service. If you have not been offered a carers assessment and you would like one then you should contact them and ask for one. (from the Carers UK website).

You can read more about Carers rights in Wales on the Carers UK website.

Carers in 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 regularly 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

Carers UK provides a detailed guide on the rights of carers in Scotland, which includes a template letter for requesting that your needs as a carer are assessed.

New legislation for Carers of adults and young carers in Scotland

On 1st April 2018 the new Carers (Scotland) Act will come into force. You can keep up to date with what the changes will mean for carers on the Carer UK Scotland Website.

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 Act assessment has not addressed the help that you need as a carer you can still ask for a separate carer’s assessment.

This Carers UK guide to the rights of carers in Scotland may be useful.

Carers of children and adults in Northern Ireland

If you provide, or intend to provide, a substantial amount of care on a regular basis, you have the right to a have your needs assessed as a carer. This applies to people aged 16 and over.

After the assessment, your Health and Social Care Trust must decide whether or not to provide services to you. The Trust must take into account the results of the carer’s assessment when deciding what services, if any, to provide for the person being cared for. 

Trusts must take reasonable steps to ensure that information is available to carers regarding their rights to assessments.

These rights and duties are set out in the Carers and Direct Payments Act (NI) 2002.

Please see this Carers UK guide carers assessments and carers rights in Northern Ireland, including carers of children and young carers.

Making a complaint

Carers who have been refused an assessment or service or are unhappy with the carer’s assessment or treatment they have received from their local authority, the NHS or HSCT can make a complaint. The complaints process is different for each UK nation.

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. Read more about managing someone else's affairs in England, Northern Ireland, Scotland or Wales.

You may also find it useful to visit the My Adult- Still My Child website. This is aimed at those new to making Best Interest Decisions and especially those caring for a young person in transition to adult services.

Contacts and further information for carers

Last reviewed 12 September 2017