All parents need a break and sometimes this is not easy to admit without feeling guilty. Having a child with special needs can put extra stresses and strains on relationships and family life. It's all about giving you and the rest of the household a break from caring while you recharge your batteries. Factsheet 8b gives tips about questions to consider before placing your child.
- Having short breaks can help you discover that it is possible to let your child go. It's a chance for your child to find out that they can enjoy life away from the family. It can help them learn to adapt to new situations and experiences much better than they might have done otherwise.
- The first step in getting short breaks is to recognise that you need them. You'll need to deal with all the difficult emotions that this may bring up, then you need to start asking for them. Good short breaks can be a life-saver and well worth the effort spent on getting them right.
- What you choose will depend on what your child needs and what is available locally. While you can arrange care with family members and friends or pay for it privately, most formal short breaks are co-ordinated by social services.
- A word of warning - short breaks can be hard to get! There is always a heavy demand, you will have to jump hurdles and you will probably have to wait.
- You will have to explain how the demands of caring for your child are taking their toll. You have to make it clear that things are difficult. Much of the social services funded respite focuses on your child's level of impairment rather than your family's needs. You may need to challenge this.
- Getting help means asking for an assessment from social services. Do this in writing; they have to respond.
- Get other people on your side. Ask your health visitor, GP or other professional to write to social services and send reports or explain what, why and how much support you need.
- Short breaks for families of disabled children may be free. Parents shouldn't be charged for services under The Children Act if they are on Income Support or receive working tax credit and child tax credit (above the family element). Contact a Family can provide further guidance: 0808 808 3556 (10am to 4pm, Monday to Friday).
- Get information from your local social services department. They must tell you about the range of short breaks available, eligibility criteria and how to apply. Breaks can include care in the home, day care away from the home, residential breaks, family link schemes and holidays. It's also worth asking other parents, your local disability group or carer's organisation.
- What's right for one family may not be right for yours, so don't feel you have to accept what you've been offered if it's not working out.
- There are regulations that require social services to make formal plans and oversee their provision, including producing a care plan which is agreed with the parents, a placement agreement, and systems for monitoring your child's welfare. Social services struggle to achieve these requirements and in practice parents need to keep an eye on what's happening.
- You know your child best and it's worth giving a lot of time to writing a detailed care plan with your child's key worker. This will help make sure that the arrangements are successful and that any difficulties are dealt with as you would wish.
- If you are considering residential short breaks go and visit first. If you like what you see, talk to your child or show them pictures before you take them to visit. Spend time there together and observe what happens. Be wary of visiting when there are no other children around. Find out what other parents and other children say about the care and ask questions.
- Write down a list of questions beforehand and take this with you to visits or meetings about short break arrangements.
- If you are considering family based short breaks, meet with the family first and spend time agreeing how best to introduce and trial the arrangements. It's important that they are sensitive to your child's needs. The Children Act requires social services to 'give due consideration to the child's religious persuasion, racial origin and cultural and linguistic background'.
- Family Link Schemes are popular with parents and children. These match selected families (or sometimes a couple or single person) to families who have a disabled child. Your child gets to know the Link Family and gradually spends more time with them, leading to longer periods that will give you and your child a break. Hopefully the relationship goes on for as long as you're both happy with it. Social services agree to pay for a set number of hours, and then leave it to you and the Link Family to sort out how you use them. The Shared Care Network can help with more information and advice. Tel: 0117 941 5361.
- Crossroads is a charity that provides breaks in your own home. After an initial meeting and assessment care workers can, for example, come and spend time with your child for a couple of hours a week or month, or help out during holidays when perhaps you want to spend some time with your other children, tel: 0845 450 0350.
- Hospices are bright sunny places. Lots of children who are not terminally ill, but need nursing care or have complex physical and medical needs, appreciate spending time in a place where they feel safe and the care is specialist.
- Keep an open mind as sometimes first visits don't go well. Often it takes time for children to settle in with new people and it's hard to get everything right immediately, so be careful not to miss out on an opportunity because it needs working at for a while.
- If you are looking for something more flexible think about asking for Direct Payments, which are your right under the Carers and Disabled Children Act. These give parents responsibility for a budget to decide when and what sort of breaks suit your family best and puts you in charge of arranging them. See A Parent's Guide to Direct Payments Department of Health Publications: 0300 123 1002 (minicom 0300 123 1003).
- The Carer's Special Grant is government funding that offers parents more flexibility. Some families have used it to help meet the costs of a playscheme, holiday or to pay someone else to help out at home or buddy their child on outings. Find out who administers this Grant for your local council and how it can be used.
- Your local Children's Information Service, run by the Early Years Development and Childcare Partnership keeps a list of registered childminders, playgroups, nurseries and after-school clubs in the area with experience of working with children with special needs.
This factsheet was written by aMAZE and the Audit Commission.