Carers Rights and the Law

With a strong and abiding passion for Carers’ Rights, in 2007 Jill was invited by then Prime Minister Gordon Brown to be a member of the newly-formed Standing Commission on Carers. She remained a member until 2014. Jill is a parent carer from Camden and a member of the team at Camden Carers since 2008. Here, Jill shares her knowledge of Carers Rights and the Law.

You can read Jill’s own caring story here.

The Care Act 2014 and Children and Families Act 2014

Illustration of woman of working from home and man standing next to her desk.

These are two of the Acts, most helpful when discussing our rights as carers. The Care Act is specifically for adults caring for adults. While the Children and Families Act applies the law to adults caring for children.

We talk about both of these Acts, how they apply in our caring roles and how to assert our Rights.

There is no legal obligation to be a carer

Before going into detail about carers rights and the law we should remember:

There is no legal obligation to be a carer

  • Carers have the right to choose

  • Coercion or manipulation to care is illegal

There may be a moral obligation to be a carer, however,

  • Willingness and ability should not be assumed

  • Carers are entitled to protection from the impact of the caring role

Part One: The Care Act 2014

What is the Care Act 2014?

The Care Act gives adult carers of adults the right to support and protection from their local authority. Young carers and parent-carers of children have protection under different legislation – the Children and Families Act 2014 – and there is more detail on this further down.

The Care Act is a piece of legislation that came into force in April 2015. It pulled together and updated various other pieces of legislation – including the National Assistance Act from 1948.

Previous legislation gave carers some rights and protection, but was offered as guidance to Local Authorities, rather than duty they must perform. Unpaid carers were consulted during the creation of the Care Act, and are afforded the same protection from harm in law as those they care for.

“Under the Care Act, carers are afforded the same protection from harm in law as those they care for.”

The ethos of the Care Act is prevention. It recognises that by supporting carers better, the impact of the caring role on other areas of their life might be less, and therefore carers are less likely to become unwell or disabled themselves.

Carers and the Care Act 2014

As mentioned, the Care Act gives adult carers of adults the right to receive support and protection from their local authority.

The main way to get this support is through a Carer’s Assessment. We can find out more about the Carer’s Assessment from the NHS here.

We can also ask our GP for a referral for a carers' assessment and often our local Carers' centre can help too. To find our local centre, click here.

If we want to get things started straight away, then Mobilise have an online Carers' Assessment tool we can do in less than three minutes!

What should our Carers’ Assessment include?

The assessment should look at everything we do within our caring role, as well as identifying our needs, including the things we would like to be able to do in our daily life.

We should be offered a written support plan, outlining any specific support we need, and we may be offered a budget for our own use, to pay for something to enhance our wellbeing while caring.

It is the duty of the Local Authority to offer carers an assessment. A Carers' Assessment is sometimes called a carer’s conversation – but it is the same thing.

All adult carers (aged 18+) caring for another adult are eligible for a Carers' Assessment.

And remember, we can make a start using Mobilise's online mini Carers' Assessment.

As mentioned, young carers and parent-carers of children have protection under different legislation – the Children and Families Act 2014 – more information is further down.

The impact of caring

Caring can impact carers in many ways – something that is well documented in Carers UK’s annual State of Caring survey. The impact on carers includes:

  • Health – physical, emotional, mental

  • General well-being

  • Finances

  • Social and family life

  • Employment

  • Education & Training opportunities

  • Life choices

Wellbeing principles

The Care Act 2014 identifies different wellbeing principles, and recognises that a carer’s wellbeing is to be protected equally to those they care for. The wellbeing principles are defined as:

  • Personal dignity (including treatment of the individual with respect)

  • Physical, mental and emotional health & wellbeing

  • Protection from abuse and neglect – safeguarding

  • Control by the individual over day-to-day life (including over what care and support is provided and the way it is provided)

  • Participation in work, education, training or recreation

  • Social and economic wellbeing

  • Domestic, family and personal life

  • Suitability of living accommodation

  • The individual’s contribution to society (citizenship)

Local Authorities’ duties to carers

Prior to the Care Act 2014, Local Authorities only had to provide information and support to carers on request, but now they have a duty to protect carers. These duties may be summarised as follows:

  • A duty to assess carers when they come to their attention.

  • A duty to provide carers with support to meet their needs, according to national eligibility criteria*

  • A duty to provide information and advice, to promote wellbeing and, where possible, to prevent people needing support.

*Note: Carers’ eligibility is measured as the impact on the carer that their caring role has, in relation to the wellbeing principles.

Summary of Carers Rights in Law

Carers have the following rights as defined by the law:

  • The right to choose whether or not to be a carer

  • The right to self-determine willingness and ability to care

  • The right to be supported to identify which of the cared-for’s needs you might be willing and able to support

  • The right for the carer’s views to be considered by Social Services when organising provision for the cared-for person

  • The right to a Carer’s Assessment – which should help you identify what you want to do with your own life, as well as measuring the impact of the caring role on your wellbeing

  • The right to request flexible working

  • The right to engage in employment, education, training and leisure

  • Rights as defined by Civil Rights and Human Rights Legislation

  • Additional rights associated with the Equalities Bill

Notes on Carers’ Rights:

  1. It is illegal to coerce or force someone to be a carer, or to demand they do certain tasks and hours.

  2. If we choose to be a carer, we have the right to say what we are willing and able to do for the person we care for – and be supported in that choice.

  3. Carers have the right to a view on how care & support is organised for the person they care for.

  4. Once we have had a carer’s assessment, we should expect to receive a support plan, as well as the conditions on which any financial support is given. The carer’s assessment is an opportunity for us to define our caring role, talk about the impact and look at any changes we wish to make.

  5. The right to flexible working is only a request, which may be negotiated with our employer; depending on the employment situation, flexibility may not be an option. If our employer refuses to consider our request, they may be in breach of the law; if they cannot offer flexibility, they must explain why it’s not possible.

  6. Carers are entitled to live fulfilling lives – therefore we have the right to do what we want to, alongside your caring role. Any attempt to prevent us from doing that, by withdrawing support, etc, is illegal.

  7. Under the Equality Act, being a carer is not a protected characteristic; however carers are protected by association with someone who has a disability, long-term condition, etc. This is for the provision of goods and services.

  8. Know that we have the right to make changes to our caring role at any time.

  9. The responsibility (the Duty of Care) for the care and support of cared-for adults lies with the Local Authority, not us!

Part Two: The Children and Families Act 2014

What is the Children and Families Act?

This legislation came into force at the same time as the Care Act – in April 2015. The Children and Families Act protects children, as well as offering specific protection to young carers, young adult carers moving into adulthood, and parent-carers of disabled children (including those with a long-term condition). We are going to look at the protections that parent-carers have under this legislation.

A parent-carer* is a person over 18 who provides or intends to provide care for a disabled child for whom they have parental responsibility.

*Note: 'Parent' includes father, mother, grandfather, grandmother, stepfather, stepmother and any person standing in loco parentis to another.

The Local Authority has a duty to consider whether the parent-carer has;

  1. Needs for support in relation to the care provided or which they intend to provide.

  2. Whether the disabled child has needs for support.

  3. Whether those needs could be satisfied by services which the Local Authority may provide.

Rights of Parent-Carers

Parent-carers have the following rights as defined by the law:

  • The right to an assessment of whether a parent-carer has needs for support (Parent-Carer’s Needs Assessment).

  • The right to ask for support where the local authority hasn’t previously recognised a need.

  • The right to protection of their wellbeing (as defined by the Care Act).

Parent-Carers Needs Assessment

This must consider:

  • Whether it is appropriate for the parent-carer to provide, or continue to provide, care for the disabled child, in the light of the parent-carer’s needs for support, other needs and wishes.

  • The wellbeing of the parent-carer.

  • The need to safeguard and promote the welfare of the disabled child and any other child for whom the parent-carer has parental responsibility.

  • The needs or circumstances of the parent-carer if there has been a recent change or a change since the previous assessment.

Additionally, the Local Authority must:

  • Ensure involvement of the parent-carer, the disabled child and anyone else the parent-carer wishes to be involved.

  • Provide a written record of the parent-carer’s needs assessment to the parent-carer and any person that parent-carer wishes to receive a copy.

  • Take steps to identify within its area, the extent to which there are parent-carers who have needs for support.

Joined-up working – a whole family approach

Local Authorities are obliged to ensure that Adults and Children’s Services work in a joined-up way, following their duties under both The Care Act 2014 and The Children and Families Act 2014, to make sure the needs of the whole family are met, and that inappropriate or excessive caring by young carers is prevented or reduced.

Part Three: Asserting your Rights

How can I assert my rights as a carer?

While it is helpful to know our rights and how the law protects us as carers, it may feel quite daunting to assert ourselves if we feel our rights are being ignored.

It is a process that takes confidence, energy and help. Here is a step-by-step guide on how to take action to restore our rights, so that we, those we care for and others in our family are better supported and protected.

  • Get help from the start: to identify our problem and its impact, check it against our rights and what the law says; and then look at our options for action. You can get help from your local Carers Service, Carers UK have a good legal team, or our local community law service may be a good place to start. Also get the support of trusted friends or family members – they can give real moral and practical support, accompanying us to meetings, etc.

  • In the first instance, contact in writing (email or letter) the service or team responsible for decisions affecting our rights – e.g. Social Services. In that communication include all the details and outline our rights. This action alone may sort the problem out.

Note: It's worth saying that in any interaction we have with professionals, e.g. Social Services, we have the right to say (firmly but calmly) “I believe you to be acting illegally in this regard” – or “Your decision violates my rights under the Care Act” - or words to that effect.

  • Keep going up the management ladder if we are not satisfied with the response we receive – even to the top e.g. the Director of Adult Social Care in our local authority. Don’t hesitate to do this, remember: most organisations want to avoid being taken to court and will make things right in order to prevent that.

  • Prepare well for meetings. Be clear in what we are asking for, have written notes of the points or questions we have. Stay focussed on our legal rights and the impact on us and our cared-for, family etc. A trusted friend, family member or other advocate can be very helpful here – to keep us on track if we become upset, take notes, be of practical help and act as a witness. It is reassuring to have someone on our side.

  • Official complaints procedures are there to help – use them without fear. They have timescales for action, which should be communicated to us. This helps manage our expectations when we might become impatient for a result.

  • Remain calm, even if we’re not feeling it, especially when communicating with others. Pace ourselves, take regular deep breaths and ask if we need time out from a meeting. We have the right to keep things at our own pace and not feel overwhelmed.

  • We retain the right to seek legal help if we are still not satisfied with the outcome of a complaint. The next step would be the Local Government & Social Care Ombudsman; however, we may also need to get legal representation.

Finally, asserting our rights – no matter how positive – can have an impact on us and those around us, both emotionally and physically.

It's so important that we take care of ourselves. This may include talking through how we're feeling with a friend, family member or another supportive person. Carers’ centres often have someone we can talk to and Mobilise offer free support calls too.

Whilst we are taking a positive step, it can feel scary and bring up other feelings as we go through the process. So let's remember to be kind to ourselves and to celebrate achievements big and small, as they happen!

Useful Resources:

The Carers Trust

Carers UK

Local Government & Social Care Ombudsman

Disability Law Service

Citizens Advice

Our local Community Law Service

About the author

Jill Pay is an Independent Trainer-Facilitator and Life Coach, and Breaks & Activities Service Manager at Camden Carers.

Jill is also a parent carer, with a wealth of knowledge on Carers' Rights. In 2007, Jill was invited by then Prime Minister Gordon Brown to be a member of the newly-formed Standing Commission on Carers. She remained a member until 2014.