Guest Blog Post by Enhance the UK

Large Plain Text Guest Blog Post By Enhance the UK

We would like to welcome Zoe as our first guest blogger; she very eloquently describes a situation faced by thousands of disabled people as Social Care budgets come under pressure across the UK. Her story isn’t an isolated case; it may resonate across the UK. The tricky balancing act between financial considerations and a duty to promote and facilitate independence is becoming ever more precarious. Enhance the UK is an organisation that we feel we have a lot in common with if you would like to know more please visit their site.

So the ‘cuts’ seem to be having a particularly negative impact on the lives of disabled people. I was faced with the magnitude of this potential impact about 18 months ago when my live-in care was nearly taken away from me within the space of one swift phone call.

I was told that the manager, after reading my review that the social worker had written up, had said ‘well lots of people in the community have arthritis that doesn’t have live-in care so why is this girl getting it?’. I obviously retorted that they aren’t as bad as me; wheelchair bound and virtually every joint in my body working to about 20% of its capacity. I tried to explain over the phone my limitations and how far I could reach etc…To which the response was ‘but you said you play Table Tennis, so if your arms are so bad how come you can still do this?’ I was horrified by the ignorance shown and welcomed them to come and watch me play and see that I won’t suddenly be stretching right over the table and running rings around it! In the year of the greatest Paralympics being held in our home town, to then have the fact that I try to still play sport be used against me, was astonishing!

Wondering how on earth I was going to cope without live-in care, I was told I could have daily care where I would have a ‘breakfast call’ to get me up in the morning, probably a ‘lunch-time’ call, and then a ‘tea time’ call to give me dinner and put me to bed. Now I know what this means.. A call no later than 8 or 9pm..so say good bye to any social life..and I currently lead a very active one, meeting friends most evenings and going to bed fairly late. Another alternative gently suggested to me would be to live in a ‘care home’……. My freedom, choice and independence was seemingly teetering on the edge of a cliff.

Then the biggest bomb-shell of all.. ‘How will I toilet through the day if my carer only comes at set times?’ I said. ‘Have you ever considered using nappies?’ Er, NO!!!!!!! because I am fully continent and 32 years old so, no, the thought of gratuitously wetting myself hadn’t really occurred to me funnily enough.. By this time in the phone call, liquid WAS gratuitously being released from my body, but from my tear ducts. I was distraught – could my ‘relatively normal’ life just be taken away from me like this? I felt so vulnerable and powerless I cannot tell you. Also very frightened.

Being disabled, we don’t have the freedom of choices that our able-bodied friends do..such as which houses we can rent/buy, where we can go on holiday, access to buildings, hotels, transport, pathways, toilets etc. Every day we have to plan and be aware where we can go – its hard to be spontaneous .. Fortunately, we live in a country that does (usually) support us, alleviating some of the major stress of living with a disability by having people to help and care for us. With the threat of this being taken away, I now felt like a ‘Nobody’ and utterly helpless with my life being in the hands of some grey-suit that would never actually meet ME and respect the life I have carved out for myself which has taken a lot of adjusting to, mentally and physically.

There has been so much progress with disability awareness and giving disabled people their independence back, with suitable housing, access to work and schemes such as Motability to enable us to drive again that it seems so backwards taking this all away from us and potentially institutionalising us in care homes (such an archaic attitude of ‘keep them away from society’!!) or leave us house bound in our own homes. I cannot get in my car on my own, I cannot wheel myself long distances to get further than my own driveway, I cannot reach into cupboards to make a snack or a meal and cannot pick up things I have dropped. So with their plan of action I would have to have been housebound, waiting for the thrice daily visit from a RUSHED carer, just staring at a TV, unable to plan meeting my friends or going to my hobbies in the evenings… oh and just sitting there wetting my pants. Sounds ideal doesn’t it?

Fortunately, as I have a brain and the support of friends and family, I was able to write a 4000 word document explaining exactly why I need 24 hour care. My social worker, once properly recognising my situation, was very supportive in presenting my case to the Appeals Panel where they also agreed I should keep my care. I feel for the people that would just accept what had been given to them and not have the wherewithal to defend themselves. Where would they be now?

Zoe Lloyd

Thanks Zoe, the last paragraph sums it up brilliantly, because Zoe understands the system, could make her case she manged to change the decision. Many people either dont know, or lack the confidence to do this. We want to focus on providing some basic step-by-step guides to what your rights are and what you should reasonably be able to expect.

Whats your experience of Social Care?

Please share any tips or ideas you have that could help others

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Things I wish someone had told me about Social Care…

Where do you start looking?

Where do you start looking?

Everyone needs a few pointers, especially when the world of Social Care is new to you. Where do you start looking & what does the terminology mean?

This is our first project:  Tips on navigating the Adult Social Care Maze

With your help and expertise we want to write:

  •  Top Tips list
  • Social Care Beginners guide
  • How – to guide for getting best out of services
  • What to do if you hit a brick wall

Are there things you wish you’d known at the beginning that could have made the experience less stressful and more fruitful

Can you help us create a guide that’s informed by experience & isn’t easily available in official guides, but would make the whole process simpler or more rewarding?

 YES!

Please think about whether you have experience of applying for social care, tell us about the things you discovered while going through the process. What would have made a difference had you known about them from day one?

This could be anything from finding out where your local services are, or how to apply, through to support for Carers or how to change your package once it’s set up…

Nothing is insignificant you’d be surprised how small things might help ease someone else’s experience.

Ways you can get involved:

Send us a message using the comments form below.
Emails us at disabilitymattersuk@gmail.com
Tweet us at @DMattersUK
Post a comment under this blog
Post on our Facebook page Disability Matters UK

Please share this blog and our Facebook page, then more people will see us and they might be the one that has that one useful tip that helps us all.

Come and join in lets see if together we can make our collective experience make the system work for us…

International Wheelchair Day…

International Wheelchair Day Large Plain Text

Happy International Wheelchair Day folks, to celebrate this day we decided to look at not only the inspirational but the slightly more humorous or maybe that should be comical side of wheelchair use… We have a few stories that are a little gigglesome  and a few that are moving stories from Through the roof’s project, Wheels for the World, so I like to state here and now that no disabled person was harmed during some of the events that follow…

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Wheels for the World – Kenya, November 2012 – Joseph is disabled through polio and works as a shoeshine man, sitting on the ground. With his new wheelchair Joseph is able to take his baby daughter out for a walk – the team even found a strap to put around her to keep her safe when she’s sat on his knee.

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A disabled lady was being wheeled by a nurse into the garden at a hospital that shall remain nameless when the nurse inadvertently tipped the lady into the rose bed, the nurse hurriedly tried to help the lady out of the flowerbed just to end up there herself. Both flailing about in fits of giggles as they had been attempting a stealthy exit of the hospital into the garden to let the lady have a cigarette… AVC …  the moral of the story always look where you’re going. 🙂

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Wheels for the World – Ghana, November 2011 – Mary had been cured of leprosy but it had left her with damaged hands and feet and extremely swollen legs – She had not left her bed for 2 years. The Wheels volunteer therapists, with the help of a volunteer technician, adjusted a wide chair with elevating leg rest enabling Mary to leave her room for the first time in two years, to enjoy the sunshine on her veranda.

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Another lady told me when ever she was in her wheelchair in town and it was busy her partner would speed up and start singing the mission impossible theme tune… dun dun duna, dun dun duna, dun dun duna, dobedo, dobedo … lol I can just see them now weaving in and out of the crowds… DS

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Wheels for the World – Uganda, April 2011 – Henry works with disabled children in the community and is a role model to them as he is disabled himself. The Wheels for the World team fitted him with a suitable wheelchair — one with removable armrests to make it easier for him to sweep the floor!

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Getting stuck in metro centre Gateshead on a shop mobility scooter which had a dodgy battery.  AF

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This story’s about the chap whose carer would wait till they where coming down hill and would let go of the handles and run along side the wheelchair racing it to the bottom…  I will reassure you that the carer always managed to grab the wheelchair and they would both slow it down in time… when I asked why they did it they said you should see the look on peoples faces… priceless… JW

OK that was a little cruel but your get your kicks where you can eh?

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Another one from a lady.  I have had some funny situations with my wheelchair one was when I went up a kerb my electric chair got stuck and I was balancing on the edge of the kerb I couldn’t go forwards or backwards.

Then another time I was in a clothes store the handle at the back of the chair got caught in some clothes on a stand I ended up dragging the stand over with all the clothes on top of me.

The most recent one was when I was when I was being helped to take my coat of in my wheelchair and I forgot to turn the power off as my coat came off it caught the handle you drive with and my chair started moving forcing me into the table I was sitting at sending the table flying.  APH

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There was the time I was drunk and had to wheel myself up a hill. Or there was the time I was drunk and my friends decided to wheel me round the estate at one in the morning! ‘sh…people are sleeping!’ Maybe you had to be there! Or there was the time when my friends decided to try and get me to do wheelies! It’s not all bad. It can be quite good fun sometimes. HS

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And finally I have a story that warns of the dangers using portable ramps…

“I managed to run myself over with my electric wheelchair when I was walking down some portable ramps. I was walking backwards holding onto the armrests and working the control. I forgot to turn down the speed and ran myself over…

I had to get my son to rescue me by putting it into reverse. Asking a blond 3yr old boy to turn down the speed and make it go BACKWARDS was a very difficult and risky business, but when you have a heavy wheelchair on your legs you just have to take your chances.  Needless to say as I’m writing this you will know that he did manage to get it going in the right direction!!” CR

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So anyway folks Happy International Wheelchair day may we celebrate the good, useful, the potential dangers, the independence they give us and comical aspects of wheelchair use and as for me the best advice I ever had, was from a toddler who said  ‘Bla Bla Bla’ he was referring to the two adults talking to each other over our heads… he was right it really does sound like Bla Bla Bla… 🙂

Here’s a link to the Disability News Services article on International Wheelchair Day