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

Understanding my point of

viewKylie Jarvis

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.

About me

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

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?

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.

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.

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?

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

Feedback

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

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.

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

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.

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