Any carer will tell you that caring is hard work and that unlike the rigours of the workplace proper, there are no designated holidays – and that, in fact, sometimes finding five minutes to yourself is a struggle.
With all that in mind, it’s clear that carers deserve a break but with many not having vast financial resources to tap, it’s difficult to see where the funds might come from to make it all happen. Fortunately, there are places where you can find the money (and the expertise) required to give carers (and the people they look after) a much-needed rest from each other.
Whilst there are a number of organisations that can offer grants that will cover some or all of your accommodation (and services that fit your needs), it can be a challenge to find them. The investment in time is certainly worth it since it’s so important to recharge your batteries and refresh every once in a while – rather than staying at home and wondering what it would be like to get away for a while.
Most carer’s will have already arranged a carer’s assessment in order to ascertain their needs and secure their rightful benefits to protect. It may also be the case that your assessment identifies that you need a rest from caring, which is a good starting point.
Indeed, as your assessment might suggest, you may be eligible for replacement care. This is designed to replace the care that you would normally be giving the person you care for – or in other words, utilising a substitute carer on a temporary basis.
It may have been noted that it’s necessary in order to protect your own health and wellbeing, that you need to take a break from caring. Replacement care might be ad hoc or it may be that regular replacement overnight care is needed so you can catch up on your sleep, for example.
Depending on the situation, respite (temporary) care may be provided by your local authority after your carer’s assessment or after the person you care for has had an assessment. The directory of local carers’ services will list your nearest local carers’ centre or respite service and they and your local authority can give you information about local support.
Once you’ve been assessed and have accepted that you need a break as part of your agreed support plan (from your local authority) you’ll then be required to think about how you move forward with the idea.
Direct payments from your personal budget can be put towards getting time off caring as part of your (carer’s) support plan. If you choose to receive your personal budget in direct payments you’ll be able to control how it is used. There are several ways of putting it towards time off, such as hiring a care worker through an agency or towards a supported holiday for both you and the person you care for.
If you don’t want to use direct payments, there are still options available to you such as asking for care as organised by your local authority or applying for funding from a charitable organisation.
The usual alternative for people who do not want to deal with direct payments is to ask
the local authority to arrange services for you so you can have a break, although some people argue persuasively that direct payments allow for more choice so that, for example you could even pool your direct payments with other people’s to fund services such as day centres.
Some local authorities provide vouchers (sometimes known as respite grants, or carers’ grants) that can be exchanged for services, such as those offered by care agencies or residential homes. You might be able to use vouchers to pay for extra costs associated with your holiday, including live-in care workers, short-stay residential care, or the cost of more homecare.
Depending on how you feel and what kind of rest and recuperation you’re looking for you might look at different support mechanisms. Homecare services, for example, can either be day services providing activities inside or outside the home, or night services that can help you get a good night’s sleep. Homecare services might also provide helpers that visit the home of the person you’re caring for. (Different types of help are available including sitting with the person you care for and keeping them company, preparing meals, and helping them to get up, washed and dressed. Visiting care workers can also provide social activities, such as taking the person you care for outside of the house, perhaps on a shopping trip, for example.)
High standards of care
Of course, it’s important that the person you care for continues to receive the high (and possibly complex) levels of care that you as a carer, provide them. With this in mind you might also consider short term residential or nursing care. This involves the person you care for being given a short stay in a residential or nursing home in order to take the pressure off the carer. Naturally, you’ll be given the opportunity to visit the premises before so that you can feel assured that it’s OK to leave the person you care for there.
NB: In situations where the replacement care provided is essentially a homecare service for the person needing care and allows you to take a break, it could be regarded as a service provided to the cared-for person. This is important because it might therefore be charged to them and not you as the carer.
Your social worker, GP, health visitor or local carers’ support group might also be able to give you information on local benevolent funds and other possible sources of funding. You may be able to get help with the cost of going on holiday – either alone or with the person you care for.
How Friends And Family Can Help
It may be that those closest to you can more fully identify that you need a break than others can. They may even be moved to offer to take on some of the care responsibilities for a short time so that you can have a rest.
Although they may be willing, even close family may not fully understand the commitments you have as a carer and therefore, without wishing to ‘talk them out’ of their offer, it’s important that you make it clear what’s involved. Furthermore, they are unlikely to have professional caring experience and their caring abilities will be therefore relatively limited, so it’s important that where necessary, they are supported by other healthcare professionals who will be able to deal with routines including eating and exercise as well as any complex instructions regarding medications.
In all cases, leave a list of contacts including the doctor’s number, nearby family members and friends, and your own number in case of emergencies. If you have an emergency plan, go through it with the people who will be providing replacement care.
If the person you care for needs specialist medical or nursing help while you’re away, arrange this through their GP. This specialist help can include visits from a district nurse or from a community psychiatric nurse. There is no charge for this healthcare, but each NHS body decides what care it will provide.
NB: Help with emergency planning
Every carer who has an assessment should be asked about emergencies and offered help to plan for them, with the person carrying out the assessment probably being qualified to help talk through what needs to be set down in the plan. Alternatively you could register with a local carers emergency scheme. A skilled worker trained to look at your individual situation would then be able to help you make your emergency plans. (Your social worker may also be able to help you.)
Discounts For Carers
Many local authorities offer leisure cards that provides discounts on leisure activities you might like to do whilst you’re taking a break from your caring responsibilities.
Leisure discounts are often available to people claiming benefits such as Income Support, Employment and Support Allowance, Carer’s Allowance and benefits for disabled people, students over 18 in full-time education, and people over 60. (Whilst eligibility requirements vary between areas, carers with a low income usually qualify.)
Where To Start
Whatever your caring situation, there is likely to be support available to you. The following (non-exhaustive) list of organisations might be a good place to start.
Specialists in helping disabled people find grants and funding for all manner of projects and of course, that includes holidays.
Saga Respite for Carers Trust
Provide a limited number of free holidays each year for carers over the age of 50 and the people they look after.
The Family Fund can provide grants towards the cost of holidays for families on a low income who are caring for a child with a severe disability.
The Family Holiday Association
A charity that provides breaks at holiday sites, or grants to help with the cost of a holiday, to low-income families in need of a holiday away from home. You need to be referred by your social worker, GP or health visitor, or by a charity or other welfare agent.
The Children’s Country Holiday Fund
Provides respite breaks in the countryside for young carers aged six to 16 as well as disadvantaged children and young people.
Turn2us is an independent charity and can help you find sources of financial support based on your particular needs and circumstances.
Contact A Family
Around the country Contact a Family is helping parents who are working together to influence the commissioning of short break services in their local area through local parent carer forums – groups of parents and carers of disabled children who work with local authorities, health providers and education settings to make sure services in their area meet the needs of disabled children and families. For example, in 2014, Hampshire County Council proposed a reduction to the Children with Disabilities budget by £3.5m-£2.5m by cutting provision in residential care, respite and short breaks services. The local parent-carer forum knew how import these services were as they had been involved in shaping local provision. They also recognised that the withdrawal of this vital support could result in more families facing crisis and potential family breakdown.
The parent-carer forum raised these concerns with the council. They sought advice to fully understand the legal duties for short breaks services, launched a survey to gain the views of parent carers and providers and presented the findings to the council. They encouraged families to highlight the personal value of short breaks services to their local councillors by sending them postcards and they supported individual families to be able to engage in the local authorities’ consultation process.
Initially the council responded to the views of families in Hampshire by stating that they would use funding from their reserves as a one-off payment to protect the budget for short breaks services in 2015/16. Since this decision in January 2015, the council have gone on to express their pledge to protect short breaks services by committing further funding as an ongoing provision.
Helen Piper from Frome in Somerset has a 10 year old daughter and a five year old son, Alex, who has severe physical and learning disabilities and uses a wheelchair. Helen says: “It’s hard to quantify just how important short breaks are to us. They are, to use an overused phrase, ‘a lifeline’. Our son Alex can’t talk or walk and is pre-verbal. He’s a beautiful, loving, funny little boy but he and his needs fill my head – sometimes to overflowing. He’s entirely dependent upon us for all his needs and it is relentless. We had respite provision up until October 2014 and when I heard we had lost it – due to the changing needs of our son – I cried. Respite is our safety valve. Without it my nerves shred. It allows us to breathe out and gives us time to relax, away from the constant worry of ‘Is he ok? Will he not be ok in a minute?’ It means we can take our daughter to places with steps or steep hills. We can listen to her without fear of interruption and my husband and I can go for dinner or maybe even have a night away. Life slows down. And we all sleep easy because Alex doesn’t always. And when he returns, I’m re-energised, I have been able to miss him – as any parent should.
Short breaks give Alex time away from us too, to spend time with people who’ll be dedicating time to him and showing him new experiences or different ways to do things. This is something we all need. My son is not a burden but everyone needs a break. Our family and friends can’t help – even though they would – because of his complex needs. Short breaks hold our family together. They aren’t a luxury, they’re a necessity.”
Contact a Family, the UK charity that supports families with disabled children regardless of their disability or medical condition are currently campaigning to stop cuts to short breaks services.
Visit: www.cafamily.org.uk or call the charity’s Freephone helpline: 0808 808 3555 for information about your right to short breaks, what to do if you are refused this service and how to work with other parents to improve short breaks in your area