Friday, 30 November 2012

The "Working Time Directive" as applied to carers

"The Working Time Directive 2003/88/EC is a European Union Directive, which creates the right for EU workers to a minimum number of holidays each year, paid breaks, and rest of at least 11 hours in any 24 hours; restricts excessive night work; and makes a default right to work no more than 48 hours per week. It was issued as an update on earlier versions from 22 June 2000 and 23 November 1993.[1] Excessive working time being cited as a major cause of stress, depression and illness, the stated purpose of the Directive is to protect people's health and safety.” Wikipedia

Isn’t that nice. The Working Time Directive is a piece of legislation which protects workers and the human rights of those workers, to ensure they are protected in paid employment and neither exploited, nor neglected, nor disenfranchised.

So what about Carers? For Carers Rights Day I wrote this, as it's a good opportunity to measure the rights of paid and unpaid workers and see what we get. 

As a sandwich carer my approximate saving to society and the all singing, all dancing, all important tax payers, was approximately £187,000 last year. That’s one year and it was worked out calculating the hours I worked caring for my younger daughter only. 

It didn’t factor in my Mum, who had Alzheimer’s nor my older daughter who has Asperger’s syndrome.

The Workers Time Directive of course only covers those who are in paid employment so apparently, I don’t qualify. I do get paid for the work I do, of course, the government are not "heartless", I received the princely sum of £58 a week. Great, so of the £187,000 pounds I save the treasury per year, they give me back £3,016. Well, thats fair...

I chose to have these children and apparently a mother, so therefore they are all my responsibility. Yes, except my mum was actually the responsibility of the state and I thought having children was an option for everyone, not restricted to parents who produce just the “right sort” of children .

So having established I do work, as I sort of get paid, (a CEO negotiating his salary on those terms and conditions versus the hours clocked, would have the worst solicitor in the world to sign up to it) let's look at the details.

According to the Workers Time Directive it creates the right for EU workers to have a minimum number of holidays each year, paid breaks, and a rest of at least 11 hours in any 24 hours; restricts excessive night work; and makes a default right to work no more than 48 hours per week.

Minimum number of holidays. I work in the EU, we have a holiday on average once every 5 years due to financial costs and the inability for travel through airports ; or to places unknown to my younger daughter and our last one was cut from 5 days to 3, due to the challenges faced by her disability.

Just before our holiday in 2007 my mum took a very bad turn for the worst and so we thought we would have to cancel, as it was she rallied and the cost of the calls everyday to ensure her progress, was massive.

It wasn’t relaxing and it wasn’t a break. It was peppered with challenges and red tape and expensive letters to take medicines and the insurance for two children with disabilities, is vast. 

Factor in Airports who don’t understand hidden disability or a resistant girl who doesn't want to be "patted down" irrespective of whether she has triggered an alarm walking through a weird doorless doorway. A child who would only take medicine in yogurt, the yogurt she was used to, from England. Then add in delays and constant pending epileptic seizures, through stress of a change in routine and lastly include the massive anxiety to my older daughter, because of her Asperger's syndrome ....and you will understand why it takes us 5 years to recover between holidays.

So Minimum number of holidays =Fail

Paid breaks. Well if you are really, really determined and really, really lucky, that there is still any kind of provider still operating under the cuts and you qualify under the very stringent eligibility criteria, you may get some respite. 
Respite is crucial for everyone. Socially speaking when it comes to disabled children/elderly disabled relatives, they are not top of the list when it comes to visits from or invitations to friends, parties dinners, sleepovers, trips out, etc.
Aside from the behaviours which people aren’t keen on, aside from the toilet requirements which people are terrified of, apart from the inability to interpret non verbal clues or needs, or rising anxiety levels, some people are really shallow and judgmental, I mean inexperienced. 
So it's not comfortable for them to be around disability. Respite on any level is crucial but expensive.

So Paid breaks (any breaks)=Fail

Rest of at least 11 hours in any 24 hours. Ha ha ha ha ha….Oh sorry you’re serious. Well let's see. When you have to ensure medications are taken at least twice a day, if not 3 times, for three people, who also need to be fed 3 times a day and washed twice a day; when you have to ensure they have exercise and are occupied and loved and talked to and that the washing is done and the environment is clean and safe you also have to accommodate their very high levels of anxiety so you're soothing and calming words and actions are a constant requirement for them. 
No awareness of danger and the tendency of wandering off and need to be found, of turning a home into a lock down unit and ensuring risk is avoided, is key.
When you are on the phone sorting school provision and benefits and service providers and ensuring that you remember to eat and wash and think and not have a nervous breakdown and keep a marriage going etc etc etc having a rest for 11 hours….not so much.

So Rest for 11 hours in any 24 hours= Fail

My Mum Elizabeth who died from Alzheimer's disease in 2011
Restricts excessive night work. If you know anything about Autism or Alzheimer's you’ll understand that the notion of day and night, can at times be quite fluid. Sleeplessness with Autism is common, both settling and remaining asleep and even if you manage to grab two hours together the worry is constant that the person you care for has woken up and is in significant danger. Or they have woken up and put a Thomas the Tank engine video on at 3am at top volume and you have to try and resolve that, because your husband has to get up at 6am and if he's late again he'll get the sack and your other child has to go to school, where she is routinely bullied for being different. 
Then the phone rings and it’s your mum with Alzheimer's, who doesn’t realise it’s 4am not 4pm again. She’s frightened and confused and you need to explain, while she can still phone you, while she can still remember you. You have to love her through this.

Restricts excessive Night work=Fail

Makes a default right to work no more than 48 hours per week. Uh ..Huh. Read all the above again. =FAIL

Caring is so many things. It’s complex and it’s diverse and it’s a massive challenge and it’s a huge joy.

It’s done because of and with, love but it’s the most undervalued and disparaged role in society. The government rhetoric which has for a few years now targeted disabled people as liars and scroungers has also set it’s sights on carers.

How dare they do either.

Family carers need more rights, they need more support they need more recognition and they need less judgmental attitudes and sneering reductive ignorance. 
Because if we all stopped tomorrow what would any of you budget holding, pen pushers do then?

We would like rights appreciated and recognised, because we are more than an enabling provider of a loved one, for a photo opportunity in election season.

We are more than unpaid unappreciated drones. We’re people of value, who do what we do for a motivation many politicians would know nothing about.

Loving someone else much more than ourselves. 

If I seem angry in writing this, I'm sorry. I'm sorry that you're not angry and I'm sorry that apologising is the default requirement for carers. I hope it discomforts those who are unaffected. I hope it makes people think. Stoic silence is convenient but it's no promoter of good mental health. 

When it comes to carers the old adage is flipped but no less true- with no rights comes much responsibility.

29th March 2015 NB : I wrote this blog in 2012. I decided to repost yesterday, in light of the news that the coalition government were proposing more cuts to social security, this time carers allowance.
Since writing it things for us got progressively worse, then better. I reposted because, although I'm no longer in receipt of carers allowance, my experiences as a carer are common to many carers.
I reposted it in solidarity with them.  Family carers can be as young as five, or as old as eighty five. In each case, they work in support of those they love because they are needed.
I'll talk, write and tweet about caring and our experiences for as long as I'm able to. I've done this about disability for seven years online , in interviews and in articles. I wanted yesterday to just be about carers.
I'll always talk about disability and caring because it's sometimes so easy for people to forget if they're not experiencing these things and because "evil" triumphs when good people do nothing. 
Many good people have RT'd this post. Some are affected by these issues and many are not. In doing this they are showing all carers that they stand with them and that carers matter. 
Thank you all so much. Nik xx