Gloriously Ordinary Sundays - 10th March 2024
I had a sneaky long weekend away in Fuerteventura last weekend…..ON MY OWN (jealous?). I love people, but I’m also a closet introvert and really need time on my own to recharge. Time on my own and some sunshine is a fabulous combination.
It got me thinking about family holidays in years gone by and the things we did as a family in the name of ‘short breaks’. I seem to have had several conversations over the last couple of months with a range of people from families to organisations who offer support and commissioners about this thing that we seem to still love to call ‘respite’ at worst or ‘short breaks’ at best, and it got me thinking how completely un-gloriously ordinary it is.
The Serviceland model frames the issue as how to deal with the problem of a relationship where one person is a burden to another. It therefore sets up services that ‘places’ the person who is the burden somewhere away from the person who they are a burden to for x number of days a month/year. It doesn’t pay attention to the concept of supporting and enabling good family life, and that is what feels critical to me.
Most families I know naturally get to have a break from each other. People go to work, kids go to school and have play dates, sleepovers. Someone plays golf, someone else goes to their book group, to church, to play in their local darts team, to bingo or to play football. It’s all very ordinary and all very natural. During lockdown we all discovered how it felt not to have those natural breaks.
So how can it go so terribly wrong when someone in the family needs to draw on support from social care? When The Boy first came to live with us he was aged 10. He had been used to going to a commissioned short break service, organised when he first went to live with his previous foster family when he was 4. Once a calendar month, he was picked up after school on a Friday, taken to the short break service to be with 7 other young people with learning disabilities for the weekend. He went from there to school on a Monday morning and came home after school. Pretty standard stuff for kids with learn disabilities who would be described as complex.
I vividly remember the first weekend he went. It was two and a half weeks after he had come to live with us, and we were still in the heady first weeks of finally getting the child we had longed for for years. Ok, we went to the pub on the Friday night, and it was fun. We had a lie in on Saturday morning, but by Saturday lunchtime I was climbing the walls as I missed him. That weekend cost £3000 and it didn’t give either of us the break that we wanted. What I wanted was to be able to do was go to work, swim or go to the gym a few times a week, have a meal out with John Nicoll once or twice a month and maybe (if I’m pushing my luck) a long weekend away.
Fast forward six months, and with a personal budget in place, The Boy was going to Saturday cinema club while we sat upstairs in the café and read the papers. He did other things with his fabulous personal assistant, Josh – long muddy walks, climbing walls, playing computer games, swimming, starting to make and meet friends. As he got into his mid-teens, he had some amazing holidays with Josh. The first one, when The Boy was 15 and Josh was 19, they went to Paris together. The deal with Josh being that the budget paid his flights, hostel-type accommodation for the pair of them and their food, and I (personally) gave him a small amount of beer money. Cheaper than the residential short break place by some thousands and much more fun (Josh discovered that The Boy could get them both around Paris as long as he was responsible for the money to do that).
The point is it’s eminently possible. The Boy was happy, we got to do the things that we enjoyed, and which helped us to be good parents. Just like in our ordinary lives, the people who want to play golf play golf. The people who prefer bingo do their thing (they’re probably not mutually exclusive). So, all we have to do is start with what people love and build their version of a break around that.
Some of you will remember the outrage back in 2007 of Gavin Croft using his personal budget to pay for a season ticket for Rochdale football club (ignore the misreporting in the article of the NHS paying – it was a social care personal budget). A fraction of the price of paying for personal assistant support, but somehow wrong in the eyes of the system. We used to take family holidays where a personal assistant was able to come with us to be there to support The Girl when she wanted time away from us and when we wanted to have time away from her. All very ordinary for a teenager, but something that I never hear happening now.
Don’t get me wrong, when things are tough for someone you love and the relationship you signed up for feels like it’s being stretched out of shape, when being there for the person you love is calling on every ounce of your physical and mental capacity, then we all need a break. Time to be with friends, to cry, to rage, to sleep, to re-group. When The Girl was at her height of hurting herself and when my Mum was in the last few months of her life and getting up disorientated (and sometimes falling over) at night I needed times when someone else was holding things together for me. What I never wanted was for either of them to be seen as a burden or for the solution to be for them to have to do something or go somewhere that made their life worse …or made them feel like a burden. At those times I also really needed to protect my role as Mum and daughter and feel that that was who I was.
There is a whole bunch of stuff to unpick here. We have taught families that having a break looks a certain way and that’s the deal. We get in a proper tangle about whether or not it is ok to pay for an Airbnb rather than for someone to have time in a registered care home, even if it is no more expensive or even cheaper, because ‘everyone would like to do that wouldn’t they’? Most services I know that are commissioned as ‘short breaks’ fail to pass any of the five tests for Gloriously Ordinary Lives.
Over the next couple of months, lots of you will be planning how you spend your Accelerating Reform Fund of which Priority 4 focusses on unpaid carers: ‘ways to support unpaid carers to have breaks which are tailored to their needs’. The ‘short break’ offer to families seems universally to be two weeks a year – the person you love is ‘placed’ somewhere for two weeks a year. If you are a family where someone is identified as having ‘complex needs’ that might be more. If you really are signed up to the Social Care Future vision and the principles of Gloriously Ordinary Lives you might want to have a think about that offer and seize the opportunity to do something different. Something that pays attention to supporting good family life and things being as Gloriously Ordinary as possible?
PS. Did you see? The Gloriously Ordinary Sundays Podcast episode two is here! I catch up with John Nicoll and we share our memories of what life looked like when The Boy and The Girl first came to live with us, and how that experienced pushed us to start defining Gloriously Ordinary Lives.