Parents often talk to me about the unavailability and inaccessibility of respite. They are concerned that there is nothing available to them or their children or that they are not allowed to access respite as they don’t meet criteria set out by the local authority which leaves them caring around the clock without a break, often with little sleep, for their disabled child.
However, there are often respite options available that many are just not aware of.
Respite is also known as "Short Breaks" and must be available to families and children with a disability. My family access Short Breaks ourselves and they are a fantastic way of ensuring we can spend time with other family members or do something together as a couple. We use disability specific playschemes and fun days which my son absolutely adores. He attends twice weekly after school until 6pm and during the summer and spring holidays. They are a lifesaver for me and enable him to just be himself which can be tough in the world today.
We needed the support of a short break/respite when my son was younger, but had no idea who to contact or what to do to get these so as a result of this experience I did some research..
A Few Facts about Short Breaks
- that all local authorities (LAs) have a responsibility and a duty to publish a "Short Breaks Statement" detailing how they will provide short breaks to disabled children and their families.
- that everyone with a disabled child is entitled to access short breaks and many of these are part-funded by your local authority. (Short Breaks are different from Assessed Need for additional support).
- that this Statement has to be available on request (most have theirs on their website) and it is meant to be reviewed at least once every 12 months.
- that short breaks fall into certain criteria.
These criteria may be known as:
- Universal: where services are available for anyone, such as access to the local leisure center or a church club, football team etc,
- Targeted: are those that are aimed specifically at children affected by disability, such as a specialist play scheme or after school club. These may be part-funded by the local authority to keep the contribution made by families to a more affordable level.
- Specialist: Access to these services is only available after an assessment from the children with disabilities social care team. Support needed would be identified as greater than that required from Targeted Services and is different in different areas. Every child is entitled to an assessment, although not everyone will receive a service. Every family is entitled to ask for one, however the Social care team will probably need to ensure you have accessed all the targeted services available to you before agreeing to carry out an assessment)
Who gets a Short Break?
Accessing a short break does NOT require an assessment from the Children With Disabilities Social Care team (or whatever your LA calls this team). Short breaks are targeted but not specialist.
All local authorities have a budget (although the amount is often not ‘ring fenced’) to spend on short breaks. To find out who has responsibility for providing these in your area, check out your LAs website or get the number for the Children’s Services or Short Breaks Team from the council’s helpline. Some LAs outsource their grant to a third party provider, others work in-house.
Local authorities have a variety of methods to inform families about their short break services. Some produce newsletters, some tweet, some email, others have a Facebook page. All LAs will send details via the post if you do not have access to a computer or the internet. To join a mailing list I would suggest contacting the LA's helpline number and making enquiries about how they publicise their services about short breaks and ask how to be added.
Some councils also have a Disability Register; this enables the LA to contact you about what Short Breaks they have to offer or how they intend to meet the needs of your disabled child.
So what kinds of short break are there?
A short break provides disabled children and young people with an opportunity to spend time away from their parents or primary carers, It may also enable them to share time with a peer group, relaxing and having fun with their friends. They should be able to experience the same range of activities and environments as non-disabled children and young people.
Short breaks also provide parents and carers with a "break" from their caring responsibilities, giving them a chance to rest, spend time with partners and other children.
Short breaks can include day, evening, overnight, weekend and holiday activities. They can range from supporting children and young people to join children's activities and services in their communities, to providing specialist services, or a mixture of both. (Most LAs have this type of information on their short break statement but in many cases, overnight respite children under the age of 10 are only available in exceptional circumstances and usually follow an assessment of additional needs)
Some local authorities provide a cash sum to pay for a short break from caring responsibilities; this may be outsourced to another agency such as your local carer support group. They are often worth contacting for further information and I would suggest speaking to a healthcare professional such as a health visitor or online and search for ‘carers’.
Sounds great so far!
But what if you are not yet accessing a short break? Some people don’t need or want to use the short break service or have enough support within the family, but many other people who would qualify don’t know how to or you don't feel able to access a short break? Do you know someone in that situation? What happens then?
How to get a Short Break
I have met parents who don’t feel they deserve a break, who feel that time away from their child would leave them so full of guilt that there would be no prospect of them enjoying a break away from their child.
Asking for, or accepting help can, to some people, feel like they are failing their child. Or they fear that their child would be too upset if they went away without them. The parent feels they ought to be able to care for them all the time but my experience demonstrates this to be unfounded and untrue. Being a good enough parent is all that is required and if you need to access a short break to do this then do so - everybody needs an opportunity to recharge.
Raising a child with a disability can be very difficult, I don’t need to tell readers of SNJ that, but when it comes accompanied with guilt, helplessness and despair, or a sense of responsibility so strong that letting go is not an option, then that job is so much harder.
I have spoken to parents who have felt that they are splitting up their family or sending their disabled child away if they access a short break. As a psychotherapist, I want to explore this view.
Reasons why a Short Break can be vital to your health
Raising children, let alone one with a disability, is exhausting and can put even the strongest marriage under strain. What if accessing a short break kept your family together, allowed your other children to enjoy their parents without feeling guilty, allowing them just ‘to be’!
What if it allowed your disabled child to have some time away from you where they were able to enjoy different activities and people and places and that when you pick them up you can be pleased to see them all over again, and they you!
What would it be like to let go of those old views and embrace new ones, just like you have embraced the challenges having a child with a disability?
What ages and stages would your child be at if they weren’t affected by disability? Would they be going for tea with friends or having sleepovers? Would they be going out for the day with a friend's parents? If so then why shouldn’t they have those opportunities and experiences in a way that suits their needs the most?
Life is always changing and we are constantly in transition in one way or another, so why not try to allow your patterns of behaving and responding to change too? It might just give you and your child space and learn to appreciate each other all over again!
Do an internet search for "Short Breaks" in your local area (Go to your LAs website) or pick up the phone. Speak to your child’s school or your local carer support group and see if they can signpost you. You can also call your parent partnership service or local parent carer forum as they will often have details to help you contact the right department.
If my family hadn’t accessed short break services I not sure that we would have still been together as a family today; that is how important they have been to all of us. Initially, I found it difficult, as it did feel like I was sending my child away. But the rewards for all of us have been immense and we definitely appreciate our time with the children plus we have more energy to focus on having fun with them, which is so very important.
Short Breaks on the Local Offer
When your local authority's Local Offer website is launched in or before September this year, you should also be able to find all the details of the Short Breaks available locally and how to access them. Many Local Offer websites will also have a rating system for families to feedback about the quality of services they use.
Self Assessment tool for short breaks activities
For Short Breaks providers themselves, the Short Breaks Network has launched a Quality Self Assessment Tool to enable short break activities to measure the quality of their work. Short break activities that complete the self-assessment and are then endorsed by the Short Breaks Network Quality Development Group.
Services rated as being good or promising are offered the opportunity of being showcased on the Short Breaks Network Website. The tool provides a valuable opportunity for short break activities to reflect and review their work. It also provides a forum for sharing good practice and highlighting the wide range of different short breaks available to disabled children.
If you would like to know more about the Short Breaks Network Quality Self Assessment Tool or know of a good short break activity that would like to be showcased contact Chris Chart, Policy Officer at Short Breaks Network, at Chris.firstname.lastname@example.org
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In Ireland, there is a 2 year waiting list for respite in my area. A couple of weeks ago 2 friends offered to mind my daughter in my home for the weekend so I could have some time away with my husband. It was the first time since my daughter was born… nearly 9 years, that we had been apart from her. The fact that she was at home being cared for by friends, one of whom is a nurse, meant that I felt very relaxed and we had a wonderful time. It is definitely worth finding time and resources to enable a bit of a break now and again.
Thank you for your comment, I am so pleased you were able to have some time away. First time in 9 years too. A two year wait sounds completely unacceptable and i’m sure feels like that too. How wonderful that your daughter was able to stay in her home too.
My daughter accesses short breaks in our county. Unfortunately the need is so great she only get 2.5 hours a month, but she loves it there.
Our system is a little unfair as it is known that some children receive up to 4 lots short breaks from different providers and other families none.
Lovely to hear that your daughter enjoys her time away. What does your county’s short break statement say about accessing short breaks? There might be more information on there about availability?
Our targeted services during school holidays have been stopped due to budget cuts if your child does not meet criteria for specialist services and cannot cope in a mainstream play scheme there is no holiday provision…I am going to use my sons DLA money to fund private support to save my sanity…
Dear Kentish Lady Thank you for your comment, What does your local authorities short break statement say about the services it provides. Its interesting that you say they have stopped them as there is money available to la’s for this purpose (although not ring fenced sadly) Ours part funds our short break providers and parents pay the rest so this works our between £15 and £20 per 6 hour play scheme short break for families to pay.
Respite care is vital for families, I completely agree. That’s why I feel more funding and support is needed for specialist respite centres.