We all need a break and that's nothing to feel guilty about. Sometimes you give so much to the one child, that you need renewed energy for the rest of the family, as well as time for yourself. Short breaks or respite are all about giving you and the rest of the household that break - allowing someone you trust to look after your child while you go out or spend time with other family members. It can include care in the home, day care away from the home, residential breaks, family link schemes, holidays, after school clubs and holiday play schemes.

The other benefit of a short break is that it can be a great confidence booster, for you as the carer and for your child. You find out that it is possible to let your child go, and your child finds out that he or she can enjoy life away from the family. Some of us have found that this really pays dividends in the long term, because our children have learned to adapt to new situations and experiences much better than they might have done otherwise.

• Tips for getting short breaks
• Short breaks or respite from the local authority or charities
• Private and other kinds of short breaks

Tips for getting short breaks

Be warned - short breaks are hard to get! First you need to recognise you need it and deal with all the difficult emotions that may bring up; then you need to start asking for it. It may begin with just a few hours, but can then lead to longer periods that will give you a wonderful break. Here are a few tips:

• Getting a short break usually means asking a social worker for an assessment. Put it in writing and keep a copy.
• Explain how the demands of caring for your child are taking their toll and make it clear that things are difficult.
• Ask other professionals to support your request by writing to your social worker as well.
• What's right for one family may not be right for yours so think about what would work.
• If you are offered a family-based short break, meet with the family first and spend time agreeing how best to trial things.
• If you are offered a residential short break, go and visit first when other children are there and ask questions. If you want to, feel free to ask your social worker if they can visit with you.
• Write down a list of questions beforehand and take this with you to visits or meetings about respite arrangements.
• Keep an open mind as sometimes first visits don't go well and often it takes time for children to settle in with new people.
• If you want something more flexible, think about asking for Direct Payments. We explain about Direct Payments in the 'Money matters' section.

Amaze also produces a factsheet about 'Short breaks' and one about 'Childcare questions', so download your copies here.

“With our respite care, the first person who was recommended to us, we actually turned down. I gave it three mornings' trial with this person and she was a brilliant carer, but she didn't have enough oomph for Jane, and I could see it wasn't going to work. So I explained, and we were given another one and she's been with us two years, and is absolutely brilliant.”

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Short breaks or respite from the local authority or charities

The following list may seem like there are lots of alternative types of short breaks for you and your child. However, in reality, this is not always the case and many of the following services are very small and have strict criteria of eligibility. It's important to persevere.

Children's Disability Service

Lots of the short break care available locally is co-ordinated by the Children's Disability Service based at the Seaside View Child Development Centre. Help is free but there is always a heavy demand for short breaks, and you may have to wait.

Outreach service

The outreach service is for children aged 2-18 with moderate to severe disabilities. It supports them to access activities and events in their local community, on an individual or group basis after school, at weekends and also during school holidays. Outreach also provides essential crisis intervention support to families who may be close to breakdown, or where there may be child protection and safeguarding issues. The service is accessed via a social work assessment.

“I get two nights a week 5.30 - 8pm. They take her out, give her tea and get her ready for bed. They take her swimming and it's just lovely, she's doing normal things after school. I can't take her otherwise, because of the other children.”

Residential services

Drove Road provides short breaks and residential care to young people aged 10 to 18 who have a learning disability and may also have challenging behaviour. Young people have an allocated number of nights that are planned ahead and this can take place during term time, holidays and weekends.

Tudor House also provides short breaks and residential care. It's open to young people aged 10 to 19 with a learning disability who may also have a physical disability or more complex needs. The homes provide a range of opportunities and experiences within the local community so young people can enjoy their breaks as much as possible. These units are both run by the Child Development and Disability Service, part of the Children and Young People's Trust. 

Link Plus

Brighton & Hove Link Plus is a service for disabled children which provides family based care ranging from a few hours or an occasional overnight stay to full-time foster care. The aim of this service is to 'link' families who require care with other local families who will share the care of the child. Care usually takes place in the carer's home. Some children have regular overnight stays throughout the year others have occasional weekends away from home plus extra care during the school holidays. Some children and families prefer to have day care sessions only.
 
The Home Support Service provides support to a parent of a disabled child, either within in their own home or out in the community, this includes siblings. The home support workers are employed by Barnardo's as staff and carefully matched to each family.
 
The above services are open to disabled children up to the age of 18 (who live in Brighton & Hove).  Their disabilities may include severe learning difficulties, epilepsy, physical or sensory disabilities and specific medical conditions. The services try to be flexible and meet individual family needs.

Link Plus are in the process of setting up a Contract Carer's scheme. A Contract Carer is a self-employed carer offering regular 'short breaks' for disabled children/young people in the carer's home following assessment and approval. During 2009 Link Plus will recruit two Contract Carers, one to provide overnight care to disabled children with complex health and medical needs and the other for children with challenging needs. Contract Carers will receive regular support and supervision from a supervising social worker. For more details contact Link Plus on 01273 295179 or e-mail Brighton.link@barnados.org.uk.

Foster care

The Children and Young People's Trust sometimes use the Brighton & Hove mainstream fostering service to provide overnight or longer-term care for children and young people with special needs. Like the Brighton and Hove Link Plus Scheme, the children and young people are cared for in the foster family's own home.  All carers go through a rigorous fostering assessment and care is taken to match suitable families.

Crossroads care attendant schemes

Crossroads is a charity supported by the Children & Young People's Trust and the local health trust. Any respite care you get through Crossroads is free, and you can contact them direct or be referred by a professional like your GP, health visitor or social worker. Crossroads is currently taking new referrals from families of disabled children but there is a waiting list for the service.
 
Crossroads provides respite care in your own home, on a regular basis, to give you a break as a carer. The scheme's Assessor visits and assesses your needs, and you make an agreement about what would help most. Crossroads care workers can come and play with your child for a few hours a week or month, or help out during holidays when perhaps you want to spend some time with your other children. Visits are at the times you need them most, and can be after school, evenings or weekends, depending on staff availability.

“I did have two people from Crossroads who came and stayed in the house and played with her. These women who came in loved children, and they were brilliant. They were all mums and they brought an enjoyment to the house when I couldn't, when I was struggling.”

Chailey Heritage and Finches

Chailey Heritage offers a short break service under the NHS which is designed for children who have complex physical disabilities and/or medical needs. Children are usually referred by social workers or health professionals. They are now a Registered Children's Home and have six residential bungalows; some pupils stay for occasional respite, some are weekly or fortnightly boarders and some stay with them for 52 weeks a year. They also have a service where nurses and carers provide short breaks at home.

Finches is another short break service run by South Downs NHS Trust. Finches is a specially adapted bungalow in Burgess Hill where children age 0 -19 with complex health needs and physical disabilities receive a flexible combination of overnight care, daytime care and outreach care in their own homes.

At both Chailey Heritage and Finches you can expect your child to have a keyworker, a named nurse and a care plan to ensure that the break is enjoyable, useful and medical needs are met.

Support for life-limited children

There are local charities and hospices that can offer respite care for children and young people with life-limiting or life-threatening conditions.

Demelza House provide short breaks for children with life-limiting or life-threatening illnesses. This may involve caring for the child while the family stay at home or while they have a bit of time off to 'do their own thing'. Families can also stay with them, using their comfortable family rooms and open plan living areas. Demelza House also has a team of community nurses who provide a 'hospice at home' service for children in East Sussex.

Leo House is is a Brighton-based charity that offers support to the whole family, including looking after the sick child or young person so the family can spend time together. They work in partnership with Chestnut Tree House, a hospice and charity that provides overnight and day care for life-limited children and their families across Sussex.

Direct Payments

Direct Payments have been introduced recently as new ways of funding respite care and other types of support for disabled children and their families. We have included more information about this option in the Money Matters/Other benefits section as many parents say it is well worth considering.

Befriending service from the Children's Society

The Children's Society Portage and Early Support Service have a befriending service for disabled young people, aged 12-18. The service recruits befrienders from across the city to spend time with disabled young people.

The service aims to help young people improve and extend their independent living skills and also offers opportunities to extend social skills and access to leisure activities. Referrals to the service are accepted via your child's social worker.

After school clubs and holiday play schemes

For many parents the most helpful kind of short break is an after school activity or play schemes that take place in the holidays. They are a lot of fun for your children while also giving you a break.

The Children's Disability team help fund inclusive after school clubs and play schemes such as Extratime, Cherish and BHIP. Sometimes the team may fully fund sessions as a way of offering parents a short break.

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Private and other kinds of short breaks

If you've exhausted offers of help from your family and the forms of short breaks we've described above, there are private short break agencies. Though they can be expensive you should be able to use Direct Payments to fund such respite care. For further information on Direct Payments, contact Seaside View or organisations like the Carers Centre and Brighton & Hove Disability Advice Centre for information.

Rainbow Trust is an organisation which provides respite care and other support for families where the child has a life-threatening illness or is dying. They have two houses (the nearest in Surrey) where children and their families can stay for up to two weeks. They also bring support into the family home.

Rainbow Respite is a new organisation founded by child carers who are experienced in looking after children with complex needs. They are registered with the Family Information Service and Ofsted and all their staff have enhanced CRB checks and paediatric first aid training. For further information contact Debbie on 412899/07947 834079 or debbie@rainbowrespite.com

Community Service Volunteers

Community Service Volunteers (CSV) can provide home based respite care. Although in some areas an organisation may take on and supervise a group of volunteers who work with a number of families, it is also possible to have an individual volunteer living with one family and providing support to parents. There is a cost attached to this, however, as the volunteer is paid a weekly allowance as well as being given accommodation, and CSV is paid a fee so that the organisation can provide proper support and supervision for the volunteer.

Childcare and childminders

The Family Information Service, which is part of the City Early Years Childcare (CEYC) team, has a list of registered childminders, playgroups, nurseries and after-school clubs in the area. They offer an extra support service which can help you find suitable childcare if this might not be straightforward for your child. They have developed training and support for those childminders who work with children with special needs and formed a Childminding Network. To find out more you can ring the Childminding Network Co-ordinator whose details are listed in our Useful contacts.

They also run the At Home Childcare Service which matches families needing childcare in their own homes with qualified, Ofsted registered childcarers. To find out more call 01273 293628 or email sian.bruce@brighton-hove.gov.uk.