Learning Disability Week 2018
Last week was learning disability week. This is some of what we did.
On Monday 18thJune we had a tea party to start the Treat Me Well Dudley campaign. We had the Mayor of Dudley come to the tea party.
When the tea party had finished, DVC and Lunch on the Run got ready for the Mini Shine Event on the night time. Lots of people turned up and did a performance. I did the Lion King “I just can’t wait to be King” dance. People played the organ, guitar, keyboard, sang, danced and read a poem. Some people got up to do karaoke. Everyone really enjoyed it and was clapping along to the songs. It was a very good night.
On Tuesday 19th June DVC were at Russell’s Hall Hospital with Jacqui Howells the Learning Disability Nurse, doing some training for the adult nurses where we talked to the nurses about what we do as a charity, and told them that DVC was trying to raise awareness for the Treat Me Well Dudley campaign and what we wanted to get out of it.
On the afternoon another member of DVC told his story to raise autism awareness.
On Wednesday 20th June we was at Russell Hall Hospital again. Two members of DVC was in the simulation lab. This is when students usually practice on dummies but this time they practiced on experts by experience. That makes it more realistic and for the nurses.
On Thursday 21st June half of the DVC team was back up in the simulation lab. The rest of the team was in the main reception in the Health Hub telling people about Treat Me Well Dudley and what it is.
Then the Unicorn Centre came along with their Sing and Sign group and we all performed a song called “This Is Me” in main reception at 11am. It was really fun.
On Friday 22nd June DVC was presenting and sharing their experiences with adult student nurses. 3 members of DVC shared their stories to tell people what it is like to have a learning disability. There was a parent and carer there to train the nurses. DVC did games with the nurses about how to communicate and talk to people.
It was a very good week.
We did lots of training and talking and telling people about us and had lots of fun.
Joanne’s Voting Blog.
Why Voting Is Important To Me
Last week I went to the polling station with my dad and sister to vote in the local election.
We looked at all of the people we could vote for and I chose the one I liked best.
It is important to vote to have a choice.
Voting made me feel important and happy but it was quiet and there were not many people there.
My vote is important so I can choose the person I think will be best to help me and people with learning disabilities.
A couple of weeks ago I had the opportunity to talk about my experience of being a mom of 3 children (young adults) with Autistic Spectrum Disorder.
I was asked to tell my story at the Transforming Children’s Lives event in Dudley on Friday 20th April.
I must admit I was terrified because I had never spoken in front of that many people before (approximately 150) but I wanted to get some of my experiences and views heard.
I was interviewed on stage by Claire from Dudley Voices for Choice and had 15 minutes to tell our families story, where I think services have got things right or wrong, and how important it is for different organisations to work together with families.
I talked about some of my family’s history and how I have had to fight for support while my children were little and since they have approached adulthood.
My family reached crisis point a year ago and although I was in a bad place I was lucky enough to have contacts at DY1 building as one of my children is a trainee at Lunch on the Run, which has been a real support network for me.
I knew Sarah from DVC, who are also based at DY1. One day last year, Sarah witnessed one of my lads have one of his worst meltdowns ever. This led to Sarah signposting me to Nicky Burrows from Children’s Services at Dudley CVS who was able in turn to signpost me to many services including people from Phase Trust, education and housing services who have now been able to find us alternative housing following being subjected to antisocial behaviour at our last property.
This experience made me feel amazing, in fact…liberated. I surprised myself that I had the courage to speak to a room of people from services that can potentially make a difference to other children’s and families lives in the future. I really hope that the people there heard what I was saying and continue to listen to other parents because we, as parents, know more about our children than any other person or “professionals”.
When a family is crying out for help they need to be listened to immediately. One thing I’d like people to take away from what I said and improve is that services need to react quicker if they are to make an impact on families lives and to prevent a crisis from occurring in the first place.
Also, families need to be treated as a family…as a unit, not individuals. Yes, people within that family may need separate services and treatment but people must remember we are families. This is our lives. Things don’t go away for us, ever.
Life is much better for us now, but we are not suddenly ok. We are still seeking support due to “criteria” based brackets, particularly age related or time restricted provision which should be offered in a more individual way.
My support network at the moment is Lunch on the Run and Dudley Voices for Choice, both adult services for my 17-year-old boys and this has been the case for a few years. The Crestwood School has also been a massive support to both me and my boys.
One last point I would like to make is when a family is in need of help and come to one service, don’t just leave it at that one service if you can see we would benefit from other services, refer us or sign post us in the right direction – don’t just open 1 door, open them all!
There is still a lot I would like to say to people, some things were not appropriate for this event, but I would like to have this sort of chance again to speak to people about other things.
But it was a start.
I already feel better in myself for speaking up in front of so many people from different organisations and talking to people after it who said they found it really helpful and made them think what they can do to keep improving things.
By Diane Williams
It’s not often I get so frustrated that I feel the need to vent via a blog. However, this one needs sharing. Anybody who knows me personally will know that my greatest passion is communication and the variety of ways we communicate, as humans, to share our thoughts, wishes, wants and desires to others. I very much believe that if you communicate with a person in whichever way they are able to or choose, then most things can be achieved or at least attempted.
For the past eight years as a worker for a self-advocacy group I have been able to share my passion with a wide audience and hope that during this time I have empowered people to share their thoughts, dreams and needs with others.
So that leads me nicely to my frustration …… after nine years of working with the most amazing people and sharing the ideals necessary to communicate well, why am I still having the same conversation I was having in 2010!?
Communication is not just talking! It’s listening, it’s understanding, it’s body language, sign language, pecs and a whole lot more. It is also about how we share information. We are constantly asked our opinions on matters that will shape and design future services, whether that is a rise in travel costs, what we think about our local library or what our hospitals should provide, we are asked. Most of the time it is by an internet survey, paper-based questionnaire or if you’re lucky …… with a human with a pen!
I work alongside people with learning disabilities and people with autism and adapt information to meet individual needs on a minute by minute basis. So why is it that whenever people’s opinions are gathered and consulted on do others not consider that there may be more than one way to share and communicate with people and that those said people may need information in a way that suits their needs even when it does not meet an organisations data requirement?
The Accessible Information Standard was approved and states ‘any organisation that provides NHS or adult social care must follow the accessible information standard by law’. (NHS England) This was from 31.07. 2016.
If you give people information in a way that they can understand then they will respond. By not providing easy read, large print, audio and other formats you are excluding groups of society that may well have the real answer to what you are trying to find out.
Today I was asked to provide a specification on what good easy read information looks like …. This is my response, good easy read is clear, understandable and most importantly meets the needs of the person who is using it!
Everyone has different needs and takes information in different ways. If we want engagement and consultation to be real and meaningful to both the person who requires the expertise of the participant and the person who is taking part, then should it not be a given that it will be done in a way that they can understand? It’s like asking for a specification on how the whole team want their cup of tea and only picking one way to do it! I know that in our team there are at least five differing tastes, and if you gave me the wrong one I wouldn’t thank you for it!
So, here’s my plea.
Firstly, can everyone who is looking to use alternate formats ask how this should be done and how people would like it? Sounds simple doesn’t it? It will save you all a great deal of time in the long run whilst empowering the person to be a part of whatever it is you are offering or asking.
Secondly please click on the link below. This information is for YOU! It is everybody’s business to understand and everyone’s responsibility to make sure it happens.
by Sarah Offley