A recent survey found that many family carers of people with learning disabilities feel at breaking point, and a lack of respite care is often central to this. Editor Dan Parton reports.
For Hayley Goleniowska, it was only when her body gave out and she ended up with a facial palsy that she realised she needed a break from constantly caring for her young daughter, Natty, who has Down’s syndrome.
The facial palsy was caused by stress and exhaustion; Goleniowska hadn’t had a break of any sort since Natty had been born.
“When Natty arrived, and it is probably the same for any child with a disability, you are stuck in that almost hamster wheel of hospital visits – and heart surgery in our case as well – and you keep going on adrenaline,” she says. “A break for me or my husband at that time was one of us having a nap while the other took over because we couldn’t leave Natty with someone else while she was vulnerable.
I’m sure a lot of people feel that way. We don’t live near any family so there was no one we could trust that could come in and look after Natty.”
But her illness was a wake-up call, and she quickly arranged a weekend away with a friend and came back feeling refreshed and “ready for anything”.
Goleniowska, who writes the Down’s Side Up blog (www.downssideup.com), admits asking for help, or a break, is hard. “There is a feeling that if you ask for help you are failing and weak. That whole thing of ‘we’re fine’. It is quite a big step to say ‘I need some respite’ or ‘I need some help’.”
But now, Goleniowska is careful to ensure that regular short breaks are included in her family’s life, not only to give her and a husband a rest from caring, but also to spend some quality time with their other, non-disabled daughter.
Goleniowska’s story is by no means unique. Many family carers of a person with a learning disability admit they struggle with the demands of being a full-time carer without having a short break. Indeed, eight out of 10 carers say they are ‘at breaking point’, and have not had any breaks in the past year, according to a recent report by learning disability charity Mencap.
Mencap’s Short Breaks Support is Failing Family Carers report also found than nine out of 10 family carers surveyed feel highly stressed, and half have given up, or are considering giving up, work. Nine out of 10 family carers added that a lack of short breaks was having a negative impact on their family life.
James Robinson, campaigns and policy officer at Mencap, and co-author of the report, says the importance of short breaks should not be underestimated. “Our survey found that the vast majority of family carers provide more than 15 hours of care every day – that’s more than 100 hours a week – and that places a huge strain on them and on their families. Short breaks are a way for families to get away and get a bit of time off – they may be sleep deprived, feeling stressed and overwhelmed and this provides a break from it.
“Respondents to our survey said it was a lifeline, one thing that can help to make life bearable and something to look forward to. It really is an essential part of someone being able to continue caring for a loved one and do what’s in their best interests.”
Yet research from Mencap suggests some local authorities are not giving short breaks the emphasis they deserve. For example, more than half of councils have cut spending on short breaks since 2009/10.
This is despite the Government committing £1.2 billion for short breaks for carers in 2010. However, the money was not ring-fenced and, while Robinson admits it is difficult to track where the money has gone, there is a suspicion some local authorities, faced with swingeing budget cuts, have used some of the money earmarked for short breaks on other aspects of social care.
There are other problems, Robinson says. “Where money is being spent, it is not being spent effectively. One in 10 services improved in the past three years, so while there is more money coming in the outcomes aren’t improving.”
Another concern is that many families’ needs are not being identified, Robinson adds. “Six out of 10 family carers told us that they have never had a [carer’s needs] assessment and two out of 10 have been refused an assessment. That means that it is very hard to identify what the local need is and to then meet that need.”
This adds to a sense that some local authorities are not prioritising short breaks, Robinson adds. “There is evidence to suggest that that money is not going where it is supposed to and any local authority that can see the value of short breaks both financially and morally to families should be seeing it as a priority.
Four out of 10 families have experienced a cut to their short break service in the past three years – that’s not a sign that short breaks are being prioritised.”
But not prioritising short breaks can be a false economy for local authorities because care at home is often cheaper than full-time residential care, Robinson adds. But more important is the impact on the wellbeing of the person with a learning disability and their carer(s). “People caring for loved ones want to do what’s best for that individual and [ensure] they have the best quality of life they can and sometimes full-time residential care doesn’t conform to that.
That needs to be considered as well when making these decisions; there is not only a financial imperative on local authorities but also a moral obligation to make sure people aren’t being forced out of the care of their family against their wishes purely because the family feels they can no longer go on because of the extraordinary caring responsibility they undertake on a daily basis.”
There are a number of different short break options available to carers, including:
• Day-sitting services, which might enable a carer to do the shopping or go for a coffee with a friend
• Night-sittings service that can enable a carer to get a full night’s sleep
• Day centres, where people with learning disabilities can go and spend the day doing something different and meeting new people.
Yet many carers don’t realise what services are available, according to Chloe Wight, senior policy and public affairs officer at carers’ charity Carers UK. “Local authorities have a duty to let carers know they can have an assessment of their needs, but often carers aren’t aware that’s available,” she says.
But there is also an issue about the quality of care provided in short break facilities, Wright adds. “Many families don’t trust the replacement care they might get if they were to have a break and if they don’t feel the quality is high enough then they aren’t willing to use that service.
“There have been some real concerns about the quality of residential and some domiciliary care services. We hear stories from our members about care workers who come in and are only able to spend a very short amount of time with that person and many families aren’t willing to have that, they are more comfortable providing care themselves.
“We have stories from our members that they try to use short breaks but they weren’t happy about the care being provided [so] they have withdrawn them from that care.
“While there are a lot of brilliant and professional care providers out there, it only takes one bad experience for a family to feel that they can’t trust that service.”
Wright says that the availability of care varies across the country, as does the cost, although legislation being introduced in May in the Care and Support Bill aims to produce a more national standard.
This includes an enhanced right for carers to have an assessment, so rather than having to go to the local authority to request one, the local authority has a duty to offer them an assessment. “We are hopeful this might make families more aware of the support that is out there and might increase the information and advice they receive.”
Effects of cuts
However, without greater investment in the social care system there is a risk that those rights will not have their intended effect, Wright warns.
“The social care system is in crisis and some families aren’t getting the help they need and some people are going without quite basic support services. Much greater investment is needed to bring our social care system up to scratch and part of that needs to be in short breaks for carers to enable them to carry on caring.”
Mencap’s Robinson agrees that cuts to social care services, as well as benefit changes, are having an impact. “I don’t think there has been enough appreciation of the cumulative impact of cuts: not only are people losing their short breaks and social care but also the financial help they may once have been entitled to.
“It is a very difficult time for family carers and now is as important a time as any to make sure things are recognised because the future does look bleak for some. These are people saving the state a lot of money and they are getting very little reward for it. Now is the time to change that.”
This article first appeared in the May/June issue of Learning Disability Today. For more features like this, you can subscribe to the magazine here: www.pavpub.com/c-32-learning-disability-today.aspx