The right to respite

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105sbUna Summerson examines the state of UK short breaks provision and how families are being affected

It is 30 years since the right to short breaks for families of children in need was enshrined in law by the Children Act 1989. The Act recognises the importance of short breaks to the emotional and physical wellbeing of families of disabled children.

Short breaks, which are also known as respite care, can include day-time or overnight care in the home or elsewhere, educational or leisure activities outside the home, or services to assist parent carers in the evenings, at weekends and during the school holidays.

Why breaks matter

Research shows that families who receive a regular break are emotionally stronger, physically healthier and experience lower rates of stress, depression and sleep deprivation. For disabled children, short breaks give them independence, with the opportunity to spend time with peers away from home. Essentially short breaks relieve the pressure on families’ day-to-day lives, helping them stay together and preventing them from reaching crisis.

In recognition of this, The Children Act 1989 requires local authorities to provide services designed to assist family carers of disabled children to continue to provide care “by giving them breaks from caring”.

Regulations made under the Act in 2011 make clear that short breaks are not just intended for families at crisis point. Local authorities have a duty to consider giving families short breaks to enable parents to take part in training, education or to carry out household tasks, as well as spend time with other children in the family. But sadly, despite the evidence of their benefits and the duty on local authorities to provide them, only a small proportion of families with disabled children receive short breaks.

 No relief

Research carried out by Disabled Children’s Partnership (Give it Back, 2019) with 3,400 parents of disabled children, found that 57 per cent have never received a short break and shockingly 12 per cent don’t even know what short breaks are. According to this research, only one in ten families with disabled children receive a short break.

The reason behind this is undoubtedly due to the prolonged and ongoing squeeze on local authority budgets over the last decade. Children’s services have historically been underfunded, but there is now an unarguable crisis in children’s social care.

In 2015, research by the Every Disabled Child Matters campaign (Short Breaks in 2015: An uncertain future) found that more than half of local authorities had cut spending on short breaks for families with disabled children since 2011/12. The findings were gathered through Freedom of Information requests to every local authority in the UK. Of the 126 local authorities who responded, 73 had made an average cut of 15 per cent in spending on short break provision since 2011 and for some it was as high as 26 per cent. When taking inflation into account, 75 per cent of local authorities had cut their short break provision in real terms.

The consequences of this hollowed out support was laid bare in the Give It Back research which found that:

  • only four per cent of parents feel they get the right support to care safely for their disabled children
  • more than half (54 per cent) of parents have been treated by a GP for depression, anxiety or stress
  • 40 per cent have experienced relationship breakdown with a partner since diagnosis.

This is unacceptable and that’s why it is so important that the Government gives back the £1.2billion funding that is missing for disabled children’s services.

Accessing short breaks

Short breaks are most commonly provided by local authorities, but the NHS also has important responsibilities to provide this support. Sometimes where respite centres are providing care to children with complex health needs, it will be a joint initiative under the “working together” duties.

Some short break schemes may be described as “universal”, which means they are available to all children and you don’t need an assessment to access them. Eligibility criteria for universal short breaks must be set fairly. Speak to your local authority to see if they offer universal short breaks.

Local authorities do have the power to charge for services they provide under the Children Act 1989 and the Chronically Sick and Disabled Persons Act. Each local authority will have its own charging policy and it is usually your income and savings as a parent that are taken into account. Your child’s Disability Living Allowance shouldn’t be taken into account, and you should not be asked to pay more than you can afford.

Despite the difficulties of accessing short breaks it is a family’s right to request one, so don’t be put off from applying. There is some excellent provision out there and it can make the world of difference to your family.

If you are looking to get a short break, speak to your local authority. The main route to accessing respite involves undergoing an assessment of your child and family’s needs by social services.

To find what short breaks may be available, you can try contacting your local Family Information Service. Families in Scotland can search for services at Shared Care Scotland, the national third sector organisation providing information on short breaks.

Family struggles

Angelina Murphy from Hertfordshire fought the closure of Nascot Lawn respite care centre in the High Court. Although her case was successful, the centre was eventually closed and the family are dealing with the consequences.

Angelina and Gary Murphy from Hertfordshire have two children, Liam aged ten and teenage daughter Laura. Liam has Down’s syndrome, epilepsy and chronic lung disease. He requires round the clock care. Liam and his family were supported by Nascot Lawn respite centre in Hertfordshire until it closed one year ago. They received three days and three nights respite a month, when the family caught up on sleep and were able to do everyday things together, that they are unable to do with Liam.

They now qualify for carers to come into the home at night. The carers do a night shift from 10pm to 7am to give the family regular sleep to help them care for Liam throughout the day. But they are not finding this a suitable alternative, because they are required day in and day out to provide intensive care with no break. Even when the carers are there, Angelina and Gary are still on high alert and on occasion have to step in when Liam is critically unwell or they hear him in distress.

Angelina said: “We are a ticking time bomb. Life has become chaotic. We are living day to day.”

Fighting cuts

Nikki Kimber from St Anne’s in Lancashire led a parent campaign against cuts to a local short breaks service for disabled youngsters.

Nikki’s daughter Antonia, aged 17, uses the Break Time service and was dismayed when Lancashire County Council proposed ending it last year. She got together with a group of parents to oppose the threatened closure. They recruited the help of a specialist law firm and, in August 2019, the council announced it was reconsidering the funding cut and would review all short breaks services.

While parents remain concerned for the long-term future of Break Time, they are relieved to get more time to input into plans for short break provision in the area. Lancashire Break Time provides short breaks for parents or carers of young people with SEN and disabilities and can take the form of evening, weekend and holiday clubs lasting at least two hours.

Nikki said: “Antonia has benefited hugely from the Lancashire Break Time clubs and activities. It is a joy to see her interacting with her peers at the special sports club in an environment where she isn’t judged but is valued, encouraged and stretched. Whilst she is enjoying her time away from us we can recharge our batteries.”

About the author

Una Summerson is Head of Policy at Contact, a charity for families with disabled children. She is on the steering committee of the Disabled Children’s Partnership, a coalition of 70 charities.

 contact.org.uk

 @contactfamilies

 @contactfamilies

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