Supporting the carer can help:

• To sustain the carer in a caring role to enable them to have a life alongside caring
• To reduce strain and stress on the carer
• To reduce the likelihood of carer health problems
• To obtain better outcomes for the carer
• To obtain better outcomes for the cared-for-person
• To help minimize cost to NHS of meeting health needs
• To reduce costs to local authorities of replacing care by carers with a paid carer

Carers’ rights

It is important to know your rights as a carer, in order for you to access support that may be essential to maintaining your own health, well-being and work-life balance. The following UK and Ireland legislation recognises the importance of supporting carers:

• The Care Act 2014: This act gives local authorities a responsibility to assess a carer’s need for support, where the carer appears to have such needs. All carers now have the right to receive a free carer’s assessment, in England, to evaluate what carer needs are. Local authorities are under a duty to meet a carer’s eligible needs, that are identified during this assessment, subject to a financial assessment. Further information can be found here: Care Act 2014 (legislation.gov.uk)

• The Children and Families Act (2014): This Act 2014 gives young carers and young adult carers in England a right to a carer’s assessment and to have their needs met (if the assessment shows this is needed). The Care Act and the Children and Families Act should work together to make sure the needs of the whole family are met and inappropriate or excessive caring by young carers is prevented or reduced. Further information can be found here: Children and Families Act  (legislation.gov.uk) knowyourrights.pdf (carers.org)

• Carers (Scotland) Act 2016: This act gives all carers in Scotland rights to a personalised plan, Adults Carer Support Plans (for adults) and Young Carer Statements (for young carers under 18 years). This will identify carers needs and help them to access information, advice and support before reaching a crisis point. This reflects a general preventative approach, which also underpins the duty on local authorities to provide information and advice services to carers. Further information can be found here: https://www.legislation.gov.uk/asp/2016/9/contents/enacted

• Carers and Direct Payments Act (Northern Ireland) 2002: This act gives carers in Northern Ireland the right to an assessment and to be considered for services to meet their assessed needs. It placed a duty on Health and Social Care Trusts to inform carers of their right to a care assessment and the right to provide personal social services to support carers directly. However, Trusts retain discretion to decide whether or not to provide service(s) to meet a carer’s identified needs. Further information can be found here: Carers and Direct Payments Act (Northern Ireland) 2002 (legislation.gov.uk)

• The Social Services and Well-being (Wales) Act 2014: Under the act, all carers in Wales are entitled to an assessment of their needs for care and support and having those needs met. The emphasis of this act is on promoting independence and empowering people by providing access to the right information, advice and assistance. Further information can be found here: The Social Services and Well-being (Wales) Act 2014 (cardiff.gov.uk)
• Equality Act (2010): This act legally protects people from discrimination in the workplace and in wider society. Within this act it is illegal to discriminate against a carer because of their responsibilities as a carer, or because of the individuals they care for. NB: This act does not apply to carers in Northern Ireland. Further information can be found here: Equality Act 2010 (legislation.gov.uk)

• The Carers Leave Act 2001: This act allows employees in the Republic of Ireland to take unpaid time off work to provide full-time care for people that require this care. Carer’s Leave Act, 2001 (https://www.irishstatutebook.ie)
• Social Welfare (Consolidation) Act 2005: Under this act, all carers in the Republic of Ireland can claim for carer’s allowance, a weekly social welfare payment to people who are caring for a person who needs support. Those who receive carers allowance will automatically receive the Carer’s Support Grant, which is paid once a year by the Department of Social Protection (DSP). This grant can be used to help with the cost of respite. Social Welfare Consolidation Act 2005 (https://www.irishstatutebook.ie).

Accessing Learning Disability Advice and Support

 To help you with your caring role, we have provided advice and guidance on financial support, respite care and the role of the community learning disability team. We have included key organisations and useful links about services to help you in your caring role.

Financial Support

Caring for a person with learning disabilities and complex health needs can be financially challenging. Some helpful details on benefits and financial support if you are caring for someone are below:

• Carer’s Allowance: You could get Carer’s Allowance if you care for someone at least 35 hours a week and they get certain benefits. You don’t have to be related to, or live with, the person you care for.You won’t be paid extra if you care for more than one person. Carer’s Allowance can affect the other benefits that you and the person you care for get. You can claim Carer’s Allowance anywhere in the UK, but some of the rules are different if you claim carers allowance in Northern Ireland. For more information: GOV.UK website; Carer’s Allowance in Northern Ireland.

• Carer premium: You may be able to get extra money added to your existing benefits or credits if you claim Carer’s Allowance (or have an underlying entitlement to it).

This is called the carer premium. This is part of the calculation that works out        how much money you are entitled to and it is added to the other amounts.

• Carer’s Allowance Supplement in Scotland: this is an extra payment for people in Scotland who get Carer’s Allowance on a particular date. It is paid as a lump sum twice a year. If you’re due to get a payment, you’ll get a letter from Social Security Scotland before the payment is made. For more information: Carer’s Allowance Supplement

For further information on Carer’s Allowance and carer premium contact your local carer service to get advice on benefits you may be able to claim.  You can also find information on the following websites:

• Gov.uk (Carers allowance UK guidelines)
• Carer’s Allowance in Northern Ireland (Carers allowance NI guidelines)
• Citizens Advice (UK)
• Carers UK
• Citizens Information (RoI)
• gov.ie – Carer’s Benefit (www.gov.ie)
• Carers Support – HSE.ie

Taking a break – respite care

Caring for someone can be a challenging and exhausting experience which can leave you little time for yourself or other members of the family.  It is important that you get a break from the demands of caring for your own health and wellbeing.

Trying to get time away from caring is difficult but there is help available in the form of short breaks or respite care. Respite care means taking a break from caring, while the person you care for is looked after by someone else. It allows you to take time to look after yourself and helps stop you from becoming exhausted and run down. Short breaks are incredibly important as it enables you to recharge your batteries so you can continue caring.

There are lots of respite care options:

• Day care centres
• Homecare from a paid carer
• A short stay in a care home
• Getting friends and family to help
• Respite holidays
• Sitting services

It is also important to think about emergency respite care, who you could contact in an emergency, if you could not reach the person you care for, due to an accident or sudden illness. This might be a relative, friend or neighbour who could step in for a few hours while other arrangements can be made.

Your local council or local carers centre can provide information about support in your area.

A good short break should be regular, reliable and frequent. It should also be flexible enough to fit in with your family’s needs, and accessible in case of an emergency.

Paying for respite care

According to the UK care guide, respite care costs on average £700-800 per week. It can be as much as £1,500 a week, for emergency respite care, or staying in a care home.

There are two main ways of getting help with the costs:

• From the council/health board/health and social care trust
• From a charity

Or, you can pay for it yourself.

Councils/health boards/health and social care trust will only pay for respite care for people who they have assessed as needing it following a needs assessment and carers assessment.  If you or the person you care for qualifies for funded respite care, you can ask them to arrange it for you, or you can do it yourself through a personal budget or direct payment.

Some charities offer grants to carers who need respite or can help to find grants for people who need respite but cannot afford it, such as the Carers Trust or Turn2us.

If you live in the Republic of Ireland, all carers in receipt of carers allowance will receive a yearly grant to help pay for things like respite. However, the grant can be used for anything you like.

You may be able to pay for respite yourself from savings, benefits, such as attendance allowance or income from pensions, work, investments or property.

Community Learning Disability Teams

You can contact your local community learning disability team (CLDT) in your council, health board or health and social service trust area for support, advice and information.

They are the first point of contact to both inpatient and community services.

The CLDT provides specialist health care services for people with learning disabilities to enable and support them to participate in daily activities and increase or maintain levels of independence.

The CLDT also provides support to families, carers and provider organisations to improve the quality of the services they offer to people living and working in the local community.

The team is made up of different professionals including learning disability nurses, allied health professionals (e.g. speech and language therapists, physiotherapists and social workers), clinical psychologists and consultant psychiatrists.

• In addition to some good support offered by local authorities, local organisations and support groups also offer some wonderful services.
• Below is a list of some useful services.
• Every carer will have different needs, at different times, so it’s important that you get the right support at the right time for you and your family:

“There is not necessarily a right or wrong way for everybody because everybody’s journey is slightly different. If someone touched in with you and asked you how are you doing, do you need any help? How are you getting on with your kids? Even once a month, even if it’s only an email you just know there is somebody out there that genuinely cares about your situation and the journey you are on with your child whether it’s medical or just day to day.”