Carers' Rights and the Law
How familiar are we with the legal ‘things’ to help us in our caring role, like protection from discrimination? Let’s face it - we weren’t taught these at school, and as carers, we rarely have the time and energy to read up on legal matters. But, knowing our rights is powerful stuff.
Working with expert Jill, a parent carer and former member of the team at Camden Carers, we’ve broken all different rights into handy bitesize sections. Pop the kettle on, pick a couple of sections to get started.
What are Carers' Rights?
Carers' rights are rights that we have as unpaid carers when looking after a family member or friend who is vulnerable, either with a disability, mental health condition, long-term illness, and so on.
When is Carers' Rights Day?
Carers' Rights Day this year is on Thursday 23rd of November, 2023. This is an annual event run by Carers UK. It’s a great opportunity to raise awareness of carers' rights. With many carer support organisations across the UK, running events to help us understand more about our own rights.
Carers' Rights and the Law
There are several important pieces of legislation it is helpful to understand as a carer. These include The Care Act 2014 and The Children and Families Act 2014. Jill, a parent carer and former trainer at Camden Carers, has pulled together this easy to read guide. Pop the kettle on and find out what support and protection we can access and demand as a carer.
The Care Act 2014 and Children and Families Act 2014
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
We may feel 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.
We can ask our GP for a referral for a carers' assessment and often our local Carers' centre can help too.
If we want to get things started straight away, then Mobilise have an online Carer's Assessment tool we can do in less than three minutes!
What should our Carer's 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 Carer's Assessment is sometimes called a carer’s conversation – but it is the same thing.
All unpaid carers (including young carers and young adult carers) are eligible for a Carer's Assessment. Even if they are not the primary carer.
And remember, we can make a start using Mobilise's online mini Carer's 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
Looking after someone can impact us in many different ways:
Health – physical, emotional, mental
Social and family life
Education & Training opportunities
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 council's 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 and the 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
From 2024, The right to Carer's Leave. The Carers Leave Act was passed on 25th May 2023, and we're awaiting an implementation date, expected to be in 2024. The Act will give 5 days unpaid leave from work, to support those we care for
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
It is illegal to coerce or force someone to be a carer, or to demand they do certain tasks and hours.
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.
Carers have the right to a view on how care & support is organised for the person they care for.
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.
Carers are entitled to live fulfilling lives – therefore we have the right to do what we want to, alongside our caring role. Any attempt to prevent us from doing that, by withdrawing support, etc, is illegal.
Under the Equality Act, being a carer is not a protected characteristic. But carers are protected by association with someone who has a disability, long-term condition, etc. This is for the provision of goods and services.
Know that we have the right to make changes to our caring role at any time.
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 2015
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;
Needs for support in relation to the care provided or which they intend to provide.
Whether the disabled child has needs for support.
Whether those needs could be satisfied by services which the Local Authority may provide.
The 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 - the whole family approach
This is 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.
1. Get help from the start
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 your 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.
2. Contact in writing (email or letter)
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.
3. Keep going up the management ladder
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. Our guide "I'd like to make a complaint" can help.
4. 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.
5. 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.
6. 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.
Carers' Rights in Scotland
If we are an unpaid carer in Scotland, then we are protected by the Carers’ (Scotland) Act 2016.
Similar to the Care Act 2014 in the UK, it places duties on our local authorities to care for us.
There are two key difference if we are an unpaid carer in Scotland:
Hospitals must (under legal obligation) work closely with carers before the person they care for is discharged from the hospital. This includes informing carers of any important information and inviting their feedback.
We have a right to be offered an Adult Carer Support Plan, before our caring role even begins...if it looks as if we will have a caring role in the near future.
Carer's Allowance in Scotland as carers
If you’re already receiving Carer’s Allowance and living in Scotland, you’ll automatically also receive the Carer's Allowance Supplement.
The Carer’s Allowance Supplement is paid in two parts:
£270.50 which would have been paid in June 2023. We would have gotten this payment automatically if we were receiving Carer's Allowance on the 10th of April 2023.
The second payment of £270.50 will be paid in December 2023 if we're receiving Carer's Allowance on the 9th of October 2023.
Young Carer Grant in Scotland
If we are a young carer in Scotland (16-18) and caring for an average of 16 hours in the last three months, we may be eligible for the Young Carer Grant. We can only receive the Young Carer Grant if we are not currently in receipt of the Carer's Allowance.
Carers' Rights in Wales
The equivalent to the Care Act 2014 in Wales is known as the Social Services and Wellbeing Act 2014.
As the name states, this legislation aims to improve the well-being of those we care for, and for us as carers. It is responsible for ensuring social services in Wales provide us with the right support that we need.
Understanding our rights as a carer in Wales includes knowing that we have:
The right to well-being
The right to information, advice and assistance
The right to an assessment if our needs can't be met through information or advice
The right to be heard and have control over decisions about our support
The right to advocacy
Carers' Rights at work
As carers, we have several protected rights within the workplace. It's useful to know about them and to make sure our employer does too.
These rights include:
Take a look at "Can I care and work?" for practical tips of staying in work around our caring roles
1. The right not to be discriminated against
The most prominent right we have as carers is the right to not to be discriminated against. Under the Equality Act 2010, we cannot be discriminated against based on our association with somebody who has a disability, which is a protected characteristic.
This means our caring roles cannot be the reason that we are treated less favourably than colleagues.
This also applies outside the workplace.
2. The right to flexible working
The Flexible Working Bill is now an Act of Parliament (law).
This means that all workers (across all industries) have the legal right to request flexible working twice a year, from day one.
Employers will have two months to respond and they'll have to consult with us if the request is declined.
Some flexible working conditions include:
Allowing a phone on the desk
Answering calls from the work phone
Going into the office less (known as hybrid working)
Swapping some hours to the evening
We must be really clear about what it is we want - such as if this is a permanent or temporary change.
We can also speak to our employer about what they are able to offer beforehand, such as whether they offer an Employee Assistance Programme to help with our wellbeing.
3. The right to time off to care for dependents
One of our employee rights is time off to deal with an emergency involving a dependent - which is covered by the Employment Rights Act 1996.
A dependent could be our child, partner, spouse, parent or someone else who depends on us to provide care. There is no set amount of time which we can take off, as it depends on the situation, but the law states that we’re allowed ‘a reasonable amount of time’.
This can be paid or unpaid leave and will depend on the employer.
4. The right to carer's leave
Coming in 2024: The right to one week of unpaid carers' leave.
The Carers Leave Act was passed on 25th May 2023, and we're awaiting an implementation date, expected to be in 2024. The Act will give 5 days unpaid leave from work, to support those we care for.
The one week of carer's leave will be regardless of how long we have worked with our employer.
We'll be able to take the leave flexibly around our caring role and we do not need to provide evidence of how we will use the leave.
Carers' Rights to property
From our tenancy rights as carers, to the types of council tax reductions we may be entitled to, it’s important we know how to handle these for when different situations arise. If we have missed anything that you think is valuable to carers surrounding property, please do let us know and we'll add it to our guide.
Living in a council property: our tenancy rights as a carer
If the person we care for lived in a council or housing association property and they were named on the tenancy agreement when they passed away, then as carers we may have the right to continue living there. However, this right depends on the type of tenancy and our connection to the person we cared for. It's called succession. If you can stay, you will take over their tenancy and any rent payments.
Our ability to stay in the property under 'succession' depends on several factors:
if we were living with them before they died and it was our main home
if we were living together as a couple
if we were related to the person who died
how long we had lived with the person who died
the type of tenancy they had and how long they had it for
what the tenancy agreement says - it might give you more rights to take over the tenancy
If we had a joint tenancy, then we can simply stay on living there. However if there has already been one 'succession' we're unlikely to be permitted another. For example if a spouse dies and succession passes to the remaining partner, who we then move into support. This would count as a double succession and may not be allowed.
Property and Finance Lasting Power of Attorney
Property and finance lasting power of attorney allows us as unpaid carers (the attorneys) to manage the person we care for’s assets when they have lost mental capacity. These assets specifically include paying pills, investing money or selling property.
Our comprehensive ‘Carers’ guide to Lasting Power of Attorney’ details everything we need to know about helping the person we care for to place a Power of Attorney and our rights as carers surrounding them.
Council Tax reduction for carers
As carers, we and the person we care for may be entitled to a council tax reduction.
For example, if the person we care for is severely mentally impaired, then are excluded from paying council tax. This is classed as being disregarded. As carers we may also qualify to be 'disregarded' for council tax, if we meet certain criteria, including:
we must be providing care for at least 35 hours a week
we must live in the same property as the person we care for
we can't be the spouse or partner of the person we care for - or their parent if we care for a child under 18
the person we care for must receive either the highest rate of the care component of Disability Living Allowance or the higher rate of Attendance Allowance or Constant Attendance Allowance.
A Home Assessment
Whilst this may not strictly be a "carers' right", carers are entitled to request a home needs assessment from the local council, on behalf of somebody who needs help in order to manage at home. We can apply to our local council for these adaptations online. These assessments are free too and anyone can ask for one.
Following a needs assessment, the local council can recommend and provide specific services, equipment or home adaptations such as access to day centres, changes to our home like a walk-in shower, equipment and practical help from a paid carer.
Carers' Rights in Hospital
One myth surrounding carers and hospitals is that we are considered ‘visitors’. However, this is not the case. Which means as well as accompanying the person we care for to the hospital, we can bring one extra person as a ‘visitor’. This can make us feel less lonely and hospital trips less daunting as carers. (Note that during Covid outbreaks, rules may change).
Whilst carers' rights can vary from hospital to hospital, some ways we know that hospitals prioritise carers is through ‘carer passports’ and extended/special visiting hours.
Carers' Rights and hospital discharge
We also have the right as carers to be involved in the decision-making, or the ‘hospital discharge assessment’ whilst the person we care for is in hospital. Take a look at our ‘Carers’ guide to a hospital discharge’ which includes support available for the transition out of hospital, either home or into another facility.
In Scotland, special attention is paid to hospital discharge and our rights as carers, under the Carers (Scotland) Act 2016.
Carers' Rights and entitlements
Caring for someone means we may have additional costs to cover.
Here are some good starting sources to help us figure out what we could be entitled to:
Benefits we may be entitled to as a carer
This is the main benefit for carers. It applies to those of us caring for at least 35 hours a week, and earning less than £139 a week. Find out if you’re eligible today.
If we’re from Scotland, and in receipt of Carer’s Allowance, we are also automatically enrolled in for the Carer’s Allowance Supplement.
This benefit often get overlooked. It's not a payment, but a credit that counts towards our National Insurance record. When we care more, we often have to reduce our working hours or quit work entirely. Meaning it becomes less likely that we are able to pay into National Insurance. Carer’s Credit fills in this gap. By accruing the credit, it opens doors to future benefits such as State Pension.
Our Carer’s Credit tool has been made to simplify things. Find out if you’re eligible today.
This is a benefit for the person we care for, not for ourselves as carers. However, if the person we care for is eligible for Attendance Allowance, then they may be able to 'buy in' some support, such as a cleaner, a paid carer or a gardener. This could reduce the amount time we spend in our caring role.
If we are on a low income, then we may be entitled to Universal Credit even if we are receiving Carer’s Allowance.
MoneyHelper does a great job at breaking down the different parts of Universal Credit - which we know can be a bit mind-boggling!
We also have a very simple financial checklist for carers, to ensure you're making the most out of the help available.
Plus, if you have not yet seen our ultimate Discount for carers guide, pop over and take a look. We all love a bargain. 😉
Carers’ Right to take a break
This one is a right and a reminder - we are entitled to breaks! But how? We hear you say! One way is through a Carer’s Assessment.
These are so many different types of breaks - formally known as respite. Our Carer’s guide to respite is a great starting point. Built with carers’ inputs, you can find out what different respite services are out there.
Taking time off for a break also applies to families of disabled children too.
The Children Act 1989 states that local authorities must:
"assist individuals who provide care for such children to continue to do so, or to do so more effectively, by giving them breaks from caring"
To help us navigate the complex world of accessing breaks as parent carers, Contact has a useful and compact guide on how to access short breaks for us and our children.
Don't forget to take care of yourself
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 also often have someone we can talk to if we need a listening ear.
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, take small moments to look after ourselves, and to celebrate achievements big and small, as they happen!
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