short breaks or respite

Having a child with additional needs puts extra stresses and strains on relationships and family life, and getting a short break can make a huge difference to your ability to cope.

Allowing someone you trust to look after your child while you have a breather has other benefits too. It can be a great confidence booster for them and for you as a carer. 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. They have a change to learn to adapt to new situations and experiences much better than they might have done otherwise.

There are some short breaks that are available to any child or young person with an identified disability or learning difficulty – these might include holiday and after school clubs, accessible clubs or paid childcare.

More intensive, longer-stay care such as overnight respite in a residential home will only be available for more severely disabled children and young people, and you will need to be assessed by social workers from disabled children’s services in order to qualify. Read more about social care assessments of need

For more tips on getting a break, download our fact sheet on Short breaks and respite [pdf 613kb]

Short breaks for all families of children with SEND (no assessment)
Some short breaks are ‘universal’ which means they are open to all children, including those with SEN and disabilities. Others are ‘targeted’, and may require your child to meet certain criteria such as getting Disability Living Allowance or having an Education, Health and Care Plan. You may have pay something towards the cost of these universal and targeted services yourself.

After school and holiday clubs and activities

Your local authority may fund or part-fund after school and holiday clubs and activities for children and young people with SEN and disabilities. Some of these schemes may be specifically for children or young people with SEND (such as Cherish in Brighton & Hove, or Funky Teens in East Sussex). Or they may be mainstream schemes that are positively inclusive and have credible experience supporting children with additional needs, such as Extratime in Brighton & Hove.

Some kinds of short break may be specifically aimed at children and young people with particular conditions – for example Spectrum in East Sussex offers a range of services for children and young people with autism, including support to access clubs, guidance for travelling and skills to manage everyday activities. Or you may be able to access siblings groups that give your other children a break from caring too.

Find out more about short breaks for all children with SEND in Brighton & Hove

Find out more about universal and targeted short breaks in East Sussex or download East Sussex’s leaflet about short breaks [pdf 1.6mb]

Leisure discount schemes

Both Brighton & Hove and East Sussex run leisure discount schemes for children with special educational needs and disabilities to help them enjoy local leisure activities at a reduced rate.  In Brighton & Hove, this is called the Compass Card and in East Sussex, it’s the i-go card.

For both schemes you will need to complete a form and go on your local disability register. You will also need to provide proof of your child’s additional needs such as their EHC Plan or Statement of SEN, or  award of DLA or PIP.

Read more about Brighton & Hove’s Compass Card leisure discount scheme

Read more about East Sussex’s i-go card leisure discount scheme

Childcare

For parents of more able children, paying for some childcare may be the best option for giving you a break. Your local council keeps up to date lists of childminders, nurseries, pre-schools, nannies, parent toddler groups, and after-school and holiday clubs. They can also offer extra support to families of children with additional needs to find the right childcare. This might include making appointments for you or linking with professionals who can provide appropriate training to the childcare provider.

Download our fact sheet on Choosing childcare [pdf 690kb], for advice on what to look for when finding the right kind of childcare.

You should also be able to get financial help with childcare costs, either as part of the universal ‘free early years’ childcare’ provided by the government for all parents from age 3 and above, or early if your child gets DLA. You may also be able to access additional grants or funding to successfully include your child in a mainstream nursery

Read more about free childcare and inclusion funding in our page on ‘Education for under fives’ 

Short breaks for more severely disabled children – requiring a social care assessment
Realistically, short breaks like overnight care or family link services will only be provided for more severely disabled children. So unless your child has severe learning difficulties or complex needs and behavioural difficulties or physical disabilities, you are unlikely to get any respite care from your local council.

In order to get this kind of care, your child and your family will have to undergo an assessment by the social workers who are part of your local disabled children’s services.

Read more about getting a social care assessments.

Parents who do get more traditional types of respite will find that they are usually given a pick and mix of different types of short break, such as one night’s respite, one day a week at an inclusive play scheme in the holidays, and a befriender once a week.

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.
The kinds of break available vary from region to region and according to your child’s age or disability. You may be get outreach services to help your child or young person access activities in their community, often provided by charitable organisations, or be matched with a link family who will care for your child on a regular basis in their own home.

Both Brighton & Hove and East Sussex provide overnight respite care in residential care homes such as Drove Road and Tudor House in Brighton, and Acorns in Bexhill-on-Sea. Or you can use your personal budget for social care to buy into a respite service run by a private or charitable organisation.

Children and young people with more complex physical disabilities or medical needs, or those with life-limiting conditions, may be able to access more specialist activities and residential short breaks at places like Chailey Heritage in East Sussex or Chestnut Tree House, near Arundel in West Sussex.

I’ve got Chailey, and it’s tailored to what Christina needs, and they have her for six hours a week in one block.

Read more about short breaks for disabled children requiring a social care assessment in Brighton & Hove

Read more about short breaks for disabled children requiring a social care assessment in East Sussex

Foster care

Mainstream fostering services can provide overnight or longer-term care for children and young people with special educational needs and disabilities, where the children are cared for in the foster family’s home.  All carers go through a rigorous fostering assessment and care is taken to match suitable families.

Private care

If you’ve exhausted offers of help from your family and the forms of short breaks we’ve described above, there are some private short break agencies, though these are usually expensive. If your child has been assessed as eligible for a service and you are getting a personal budget, you could pay for them with your Direct Payments, as it is not usually possible to get funding for them. You will need to find out about the agencies yourself, for example, by doing an internet search.

Tips for getting a short break
A word of warning: a short break can be 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 break or respite 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 short break 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 this in the ‘Money matters’ chapter.

Download Amaze’s fact sheet on Short breaks and respite [pdf 613kb]

 

It’s a big thing at any time, isn’t it, putting your child in someone else’s care… You feel better about having admitted that things are too much at times. I phoned up Susie’s link family and I said, ‘Look, we really are having a crisis, would you be able to have her for a whole day’, and they said ‘Yes, fine, we’ll have her’. It was so good because then she knew how I felt.

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