Connect- the communication disability

network

Mission statement“Supporting people with

aphasia to find opportunity and

fulfilment, helping them to re-

connect with life through peer-led opportunities.”

• A charity working with people with aphasia• Set up in 2000 by two Speech Therapists

– Wanted to address the lack of long-term services

• Peer-led ethos– Run by people with aphasia for others with

aphasia. Supported by staff and volunteers without aphasia.

Background

• People with aphasia direct and influence Connect’s work

• Connect’s work is underpinned by the social model of disability

Background

Conversations

How to be a better conversation partner

Therese Mathers London Development Coordinator

• Completed work with good communication access for people with Alzheimers, dementia and end- of- life.

• Providing support for Primary Progressive Aphasia (a type of dementia)

• Can work with anyone who knows more than they can say

Approach goes beyond aphasia…

Conversation – what is it?

Conversation – what is it?

• 2 way• 2 (or more) people• Listening and talking• Everyday• Spontaneous – not planned• Opinions and ideas• Fun, enjoyment• Way to Connect

Conversations + communication impairment

What’s the difference?•Difficulties talking•Difficulties understanding•Stop and start•Slower•Not just speech

Conversations…What’s the same?•2 people•2 way•Both people have responsibility to make it work (?)•About information, opinions, personality, fun, spontaneity•A willingness to Connect

Conversation research

Good conversation partners

Bad conversation partners

With barriers to communication …

• Both people need to work harder

• Both people need to change

• Both people need to be smart, think more

Conversation barriersWhat gets in the way of

better conversations?• Stress• Time pressure• Just focusing on speech• Lack of respect• Don’t know best way to

help

Features of bad conversation partners

Don’t believe in person’s intelligence

Not enough timeNot enough propsToo much focus on speech not on having

a good conversation

Features of good conversation partners…

They believe the person with aphasia is intelligent

Keep conversation adult, natural, balanced

They use conversation ramps flexibly, e.g. pen and paper, pictures, time

Helping the person understand:

• Use Pen and paper • Use props: paper, photos, maps etc• Write words down• Gesture, pointing and body language• Drawing pictures • One idea per sentence• Checking you’ve understood • Cut out distractions

Helping the person understand

• Use Pen and paper • Writing – both of you• Pictures, drawings• Use props– maps, newspapers, photos• Asking Questions - general …specific• Stay calm• Silence and extra time

Helping the person get their message across

• ‘Better conversations’• ‘Including people with

communication disability in research’• ‘The communication

access toolkit

• www.ukconnect.org

• ‘Caring and Coping’• Good Goal setting

guidelines

Communication training at Connect

Resources and tools developed with people with stroke and aphasia• Resources and tools developed with people

with stroke and aphasia to ensure genuine user involvement in Service Development e.g.– Props and resources to support conversation– Stroke and aphasia handbook– Aphasia Impact Questionnaire

Communication access• From July this year, the Accessible Information Standard is going to

be a mandatory, legal requirement to ensure that all NHS and Adult Social Care information, services and work is accessible to all.

• It explains how organisations should adapt their information to make sure that disabled patients receive information in formats that they can understand and receive the support they need to help them to communicate.

• Connect will be working with organisations that are looking to implement the Standard. Working in collaboration with people with aphasia means that Connect can offer training and advice.

Contact Helenmann@ukconnect.org

City Lit - Adult Education

Galleries

National PortraitGallery

Tate Modern

Theatre

Disabled led theatre

company

• ExtantTheatre company led by

people with visual impairment

Dance

• Saddlers Wells

• Royal opera House

• The Place

• Candoco

U3A –University of the 3rd Age• “learning for pleasure”

• Educational, creative and leisure opportunities

• Local U3As = Self-help organisation

• The teachers learn and the learners teach.

• over 300 different subjects

www.u3a.org.uk

Volunteering

• www.doit.org.uk section on support for

volunteers with disabilities

• www.skill.org.uk Students with

disabilitiesLocal volunteer bureaux