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Understanding & Communication with Kylie Jarvis

Learn about the importance of two-way communication and understanding from Kylie Jarvis, who has Down's Syndrome. Discover how to support and engage effectively with individuals with learning disabilities.

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Understanding & Communication with Kylie Jarvis

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  1. How to help me • Speak slowly and clearly • Ask one question at a time • Only have one idea in each sentence • Use easy words and short sentences • Give me time to think and don’t keep pushing me to answer

  2. Understanding my point of view Kylie Jarvis

  3. Understanding and Communication • Communication is really important • Communication is two way • When people don’t understand what you say, you don’t get to choose for yourself. • There are different ways of communicating. • You can’t help me if you don’t understand me • You definitely won’t understand me if you don’t listen, AND • If you don’t check that I understand you AND that you understand me.

  4. About me • So first I’ll tell you a bit about me …

  5. More about me • My name is Kylie and I am 27 years old • I have Down’s Syndrome • I have 7 passes at GCSE, including a C, D and 2 E s. • I can do some things really well but other things cause me lots of problems however hard I try. • I give speeches and presentations. Lots of them have been to doctors and medical students. • Anyone here from Leicester university who has seen me before?

  6. Things people have asked • A big question I’ve been asked is how do I feel about being different. • Well I don’t see me as different – I’m me and it’s good to be me. • Everyone is different in some way and it is OK to be who you are. • Some things I can do easily but some things are really hard for me • Crossing the road is really hard for me but you probably find it easy. • If you want to help me – don’t try to guess what I might find easy or hard. Getting it wrong will cause problems.

  7. Leicestershire LD Partnership Board • I have been part of two Boards where people from different jobs, organisations and areas need to work together. • The partnership board started in 2001 and mom and I have been part of it from the beginning. • The government said families and people with learning disabilities must be full partners. • So we try really hard to include everyone. • We are all important.

  8. The Board has to change • We have to change how we work because we have a lot less money. • Advocacy support to help people understand and take part is expensive. • We had a little meeting to talk about how to keep supporting the self advocates. • Mom and I told them about this conference and everyone thought it was a really good idea. • They said to ask if anyone here is interested in helping to support some self advocates in Leicestershire to take part in meetings? 

  9. Changes to the Board • Last year we talked about some changes that need to happen to the way the Board works • There were 3 main changes • Valuing People Team • Less money to spend • Changes to other Boards

  10. Feedback

  11. Leicestershire Partnership NHS Trust • I was elected as a public governor of this Trust in 2010. Then it was a Mental Health and Learning Disability Trust. • They made a special place for one learning disability governor as well as public governors. So there were two of us. • Then they got a lot bigger by adding lots of new services and so they had new elections last month. • They didn’t have a place for a special learning disability governor this time. • I stood again as a public governor but I didn’t get elected. • Now we don’t have our own voice anymore 

  12. Does this matter? • Many people think it doesn’t matter. • They find it really hard to include us. • That is no reason for taking away our voice. • They should see it as a challenge and try harder – not just give up. • How would you like it if no-one wanted to listen to you just because you have some kind of problem? • Anyway the government says Health should listen to us.

  13. Being a governor • I found the meetings very difficult • I did understand some of it but not a lot • They didn’t use easy words, or easy read • We did have some special help before the meetings but this was not enough to help us to be proper governors • The meetings went too fast • Most people didn’t really give us a chance

  14. Thank you  • Thank you for inviting me and listening to me. • I have some cards if anyone wants to know more about me and what I do. • Mom and I will stay for a bit and will try to answer questions.

  15. How to help me, a reminder • Speak slowly and clearly • Ask one question at a time • Only have one idea in each sentence • Use easy words and short sentences • Give me time to think and don’t keep pushing me to answer

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