LittleBlueCup Project Update

First of all, a huge apology from me. I haven’t managed to do everything I wanted to do for LittleBlueCup. 

In my defence, I have some challenging stuff going on at home. Ben – it was his little blue cup search back in 2016 that started things off – has a lot of important needs that we are struggling to meet. 

We are rapidly approaching homelessness, and working to secure us a safe, comfortable home for my family is taking up much of my time. And of course, Covid doesn’t help.

Background to LittleBlueCup

Back in 2016, Ben became a little bit internet-famous for a few days as the story of the search for a replacement for his little blue cup went viral along with the hashtag #CupForBen.

Ben is now 18 and lives with me and my wife, his brother Sammi and sister Ayesha.  

Move to Wales

In April 2018 we moved to rural mid-Wales. We had an opportunity to rent a house long-term, and we loved how peaceful it was in the countryside.  

As a family, we spend 99% of our time at home. All three of our children have disabilities and special needs. We enjoy our own company and loved the space we had in our new home in Wales.

Ben’s needs are more complicated than most people realise. He is autistic, he also has severe learning disabilities and is non-verbal. He understands very little. His complex needs around eating and drinking led to the strange search for a two-handled little blue sippy cup back in 2016, but if you haven’t read about those you can read about them if you Google “#cupforben”. 

Ben also has osteoporosis and has broken his back twice. As the consultant said to us when discharging Ben following his second injury ‘you don’t break your back twice, and you certainly don’t break it for the third time.’ He said we had to wrap Ben in cotton wool and ensure he never falls over again or has another accident, as he probably wouldn’t walk again if it happened once more.

Bath Time

Since this second hospital admission in December of 2014, Ben has been unable to have a bath.  Ben won’t use a shower, he can’t tell us, but we assume it’s a sensory thing, he screams and won’t let us clean him even if he does get under the water. We can’t make him use a shower, and he has an absolute right to choose.

Following several intensive assessments, it was concluded that Ben needs a specialist bath, one he can lay in without any difficult climbing or bending and no real risk of slipping. This specialist bath is unusual, he lays on a changing table and then the tub full of water rises and the changing table stays where it is.  You can even raise the table and the water up further – a huge bonus as this means you don’t have to bend to wash Ben .  I have a back injury and struggle to bend to help Ben with washing and changing.

This bath is expensive but would be funded by some money from a Disabled Facilities Grant.  After lots of consultations, it was agreed an extension needed to be built on to the house we live in. This would give Ben a ground floor bedroom and a fully accessible bathroom. He would have the privacy and dignity he needs and is entitled to, and because his bedroom would be much further away from the living room (currently they are next to each other), he wouldn’t be able to hear the TV or people talking. The noise of people talking – be that us or people on the TV – is something he doesn’t handle well, so this would mean we would all be able to live a little, which seemed like a great idea!

The Survey Happens

Just when it seemed things were going in the right direction – this took until last summer to reach some kind of consensus – the Landlord asked a surveyor to assess if the house needed any repairs carried out. 

The report was damning, the repairs bill would be huge, and it was decided we needed to find somewhere else to live, as the adaptations for Ben could not be done here.

The Problem With Moving

There has been a period of confusion and chaos since; we can’t just go and rent another property on the open market as not many Landlords would happily agree to extensive adaptations to their property. And – rightly so of course – the local authority will not adapt a property when we could be told we have to move out a few months later because the owner had a change heart or an event in their life that meant they had to sell up.

There isn’t a council house that would come close to meeting our assessed needs – Sammi and Ayesha have specific requirements that any home has to meet. And we can’t afford to buy a property.

We are out of ideas and facing homelessness, this house can’t sustain us for much longer, and we have nowhere to move to.

Build or Buy

The local authority has two options – build or buy.  They buy properties to add to their housing stock; they become assets, so that is one option. The other is to build. This is far more complicated, more people need to be involved, they need the land, and it takes a lot longer. We unfortunately don’t have the luxury of time. So, we need them to buy us a house.

We hate this; we feel like we are taking advantage of the system. I feel like I’m asking for way too much, and I hate that we need to rely on all this support from the local authority.

Ben’s Basic Needs

The flip side is Ben’s basic needs are not being met. His fundamental human rights. He has to be washed laying on his bed, literally a bed bath. We do all we can to make and keep him as clean as possible, but just because Ben cannot talk does not mean he doesn’t have feelings. Ben is very private; he spends all of his time at home in his bedroom, playing his CDs on his ageing PlayStation 3. He listens to a few seconds of a track for hours at a time, sometimes days on end, and it makes him very happy.  

Ben does not like being changed or washed, his personal assistants and we are very respectful of his dignity and do our utmost to make the task as quick and comfortable as we can for him. But we have to be very aware that his skin is in danger of breaking down due to him getting sore. He so needs to be able to have a soak in a bath.

He asks for so little, his treat which he gets whenever he asks for it is a trip to the nearest town with a Poundland – some 25 miles away – where he buys just two new CDs. He can have more, they are just a pound after all, but he only ever wants two. We then go to Tesco where he buys the only things he eats – bread for his toast, Rich Tea biscuits, and plain fairy cakes. He loves the drive through the smaller country lanes, so we always go the long way there and back.  He laughs most of the way, enjoying the twisty roads.

Costs

As well as his needs not being met, if the only way to ensure Ben has the life he deserves is for us to relinquish our caring roles and ask the state to provide for Ben, his care would cost a staggering amount of money. 

Ben is entitled to something like 32 nights of respite per year, which he never has.  In April that will be nearly 100 nights saved. Doesn’t sound much, does it? Until you realise that the only option available locally for Ben would cost the local authority in excess of £20,000 per week.  

He could have had over 13 weeks of respite, which would have cost over £260,000.  Instead, he hasn’t had any, and of course, we haven’t had a break either.  

I know most parents of disabled children don’t get a break, I do get that, I’m very aware. I’m not saying we are more entitled. I’m merely saying that in our case we don’t get one; we don’t have a night off. We have been together 21 years this summer, Sammi was 6 when I met his amazing Mum. In those 21 years, we haven’t ever had a night without children, not even our wedding night.  Which is fine, we are still alive! But it’s not how most people would live, right?

The Future

The thing is, most children will slowly gain independence; they may go off to uni; they may get a job; they may move away. We are entirely within our rights to ask the local authority to provide a home and support for Sammi, Ben, and later Ayesha. We would still see them, but we don’t have to look after them until we are carried off in boxes.

The cost of doing this would be huge, several hundred thousand per year.

We want to provide for them ourselves. We are happy for them to live at home if they want to. We are happy to care for them, meet their needs, help them to navigate through life.  Actually, we think we are fortunate, we have our family close and love spending time together. They get to choose, and they decide to stay with us. But we can’t care for Ben properly. We need to give Ben what we cannot give him, his needs are not being met, and we feel terrible about this every single day.  We could say ‘enough’, and demand the state takes over. But we don’t want to break our kid’s hearts.

Instead, we want them to help us meet Ben’s needs.  All their needs, but Ben’s in particular.  And as far as we can see the only option is for them to buy a house, adapt it as needed, and rent it to us.

Currently, it is dominating our lives. We have many people involved in making things work – social workers, learning disability nurses, occupational therapists, psychiatrist, managers and directors within the local authority, county councillors, our Welsh assembly member…

Ideas?

I’m not asking for support, for sympathy, or anything else. I just wanted to let you know why I have personally been so absolutely terrible and neglected LittleBlueCup. I haven’t forgotten about it, I promise, it will be live again soon, I’m just a little distracted with other stuff just now, and I have to put Ben and his siblings first. I hope you understand.

If having read this you have some ideas or suggestions, we would love to hear from you.  You may be sat there with something we haven’t considered or don’t even know about so we would love to hear from you.  Please don’t think “oh they have tried this” or “they will know about that”, we may not and at the moment, we need all the ideas, suggestions and support we can get.

Marc – TheGrumpyDad

 

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