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Health and social services for families of disabled children are in crisis, writes Amanda Batten

Recent research found that a quarter of parents with disabled children provide more than 100 hours of care – the equivalent of working three full time jobs simultaneously and without any of the usual benefits like regular or sick pay, holidays or a pension.

Carried out by the charity Contact, the research, Caring More Than Most, presents the most reliable and comprehensive picture of the lives of UK families with disabled children to date. Its findings show that there is a marked and unacceptable difference between the quality of life and opportunities available to disabled children and their families compared to those without disabilities. For example, when compared to non-disabled children, disabled children are:

  • twice as likely to live in a home where there is no parent in paid work (34 per cent compared to 17 per cent)
  • more likely to live in a lone parent household  
  • more likely to live in a household without a car, in a home without central heating and in overcrowded housing.

And at the heart of this is the fact that many parent carers are providing an unimaginable amount of care day in and day out. Providing 100 hours of care a week – which is often emotional, stressful, and physically demanding – leaves very little time for work, social opportunities, or partners. Of course, all parents care for their children, but without access to services and support, the extraordinary levels of care that so many families with disabled children are providing is unsustainable and drives the negative socio-economic trends that are described in this research.

Simple solutions

It doesn’t need to be like this, because the solutions aren’t complicated. It is often quite modest levels of support that families want, to help balance life and care – a couple of hours off to do the weekly shopping, spend time with other children or have a bath. This support could be in the form of short breaks, respite, adaptations to the home, the right equipment, personal budgets – these are all services that enable disabled children to be children, and help families to stay in work, stay together, or just to have a decent night’s sleep. They can make all the difference.

Families that receive a regular break from 24/7 caring are emotionally healthier and experience lower rates of stress, depression and sleep deprivation. For disabled children, short breaks help to open up the world and give them a sense of independence. Short breaks also allow parents to spend more time with their other children. Essentially, they relieve the pressure on families’ day-to-day lives, helping them stay together and preventing them from reaching crisis.

Short breaks services can be provided by local authorities, health services or private, voluntary and community sector organisations. Short breaks services 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.

Personal and social costs

Failure to provide short breaks risks the health of disabled children and increases the need for more frequent medical interventions or hospital admissions. Lack of this support also impacts on the emotional and physical wellbeing of the whole family. The cost savings of providing short breaks are well documented, because the alternative crisis interventions, such as children going to live in residential care are so costly. Based on local authority case studies, providing short breaks to 22 children at risk of going into residential care, has a potential cost saving of £1.8 million.

Research shows that there is an increased number of disabled children, due to advances in medicine and better diagnosis of conditions. Many more children are living longer with very complex health and care needs. Yet instead of seeing a roll out of health and social care support for this growing population of disabled children, we are in fact seeing the opposite.

The impact of austerity and pressures on health and social care budgets means that more and more services are being cut or are harder to come by for families with disabled children. It is heart breaking to see families faced with the small amount of support they do receive, being reduced or taken away, as a short-term measure to cut budgets at a local level.

Yes, local authorities are experiencing budget cuts on an unprecedented scale, but it is short sighted to cut such crucial services that enable families to continue caring for disabled children in their home. That's why the 50 charities that make up the Disabled Children's Partnership are calling on the Government to review the funding of short breaks services.

What do parents say?

Angela from Hertfordshire, mum to three-year-old Thomas (both pictured), said: “Thomas is blind, non-mobile, has severe learning difficulties and is mostly tube fed. Most families face the juggle of care and work, but when your child has complex disabilities you need much more help to keep the show on the road. When your child can't manage a normal nursery, you need help to transport them, or you need on site medical support for your child, then trying to manage both care and work takes a lot of planning. You need your family, your employer and the state to help you out. Then, when the tiny bit of respite support you get, for example four hours per week of care, is cut, you can imagine what a slap in the face that is. These are the breaks that help us do the shopping, get a haircut and re-set our family life, without them it's hard to know how we will cope.”

Jennie’s five-year-old son Ben has quadriplegic cerebral palsy. He needs 24 hours a day, one-to-one care and has a severe sleep disorder, which means he is awake up to six hours a night. Jennie says: “Ben’s dad and I struggle with the 24-hour a day care and lack of sleep. It’s crippling at times. The whole social care and health system for families like ours works on a system of crisis management. There’s no forward thinking. We live with the constant feeling that at any given moment our situation could implode. We were denied a social care assessment three times. It took us 18 months in the end. ​For a long time we were told Ben was so young he was really no different from any other child his age – despite being on high rate Disability Living Allowance. We were eventually given a social care package and we now get a few hours home help each week which, among other things, means we can collect his sister from school while Ben stays at home. Our lives are precariously balanced and if just one of the wheels falls off, for whatever reason, we could lose our home and have to pay back money for the home adaptations we've had done for Ben. It makes me so angry that families with disabled children aren't getting the support they need and are made to feel like this. It shouldn't be this hard for people to secure the help they need and deserve.

“Local authorities and the NHS have a duty to provide short breaks services. However the law around their obligations is complicated and not as clear cut as it needs to be and it’s vital that we review this before more services are closed due to loopholes.”

Further information


Amanda Batten is chair of the Disabled Children’s Partnership (a coalition of 50 charities) and CEO of Contact, a charity for families with disabled children:
contact.org.uk

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