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©Yvonne Newbold 2019
Yvonne Newbold [email protected] April 2019
Slide 1 Yvonne NewboldMother
Author of The Special Parent’s Handbook
Speaker; Trainer; WHIS Ambassador, Autism, Learning Disabilities & Families
NHS Assembly Member
Advisor, NHS England Learning Disabilities & Autism
National Learning Disabilities & Autism Awards –Lifetime Achievement Award 2018
School for Change Agents Graduate 2017
PENNA Outstanding Contribution to Patient Experience Award 2016
LDT Learning Disability Champion Award 2015
HSJ Top 50 Inspirational Women in Healthcare Award 2014
© Yvonne Newbold 2019
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Slide 2
AdvocatingEffectively For Your
Child
© Yvonne Newbold 2019
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• In school • With service providers• On the phone• In writing• At medical appointments• During hospital admissions• In small meetings• In big multidisciplinary meetings
© Yvonne Newbold 2019
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©Yvonne Newbold 2019
Yvonne Newbold [email protected] April 2019
Slide 4
Meetings would be easy if it wasn’t for the people at them!
© Yvonne Newbold 2019
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Slide 5 You’ll meet all sorts of
people, most will only
want the very best for your
child…..
© Yvonne Newbold 2019
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Slide 6
The professionals we meet are victims of the same overworked systems that we are
© Yvonne Newbold 2019
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©Yvonne Newbold 2019
Yvonne Newbold [email protected] April 2019
Slide 7
Francesca, Toby and Adam - then
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Slide 8
Toby
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Slide 9
Toby – the Birthday King
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©Yvonne Newbold 2019
Yvonne Newbold [email protected] April 2019
Slide 10 My Bucket List = Making things better for families like ours
© Yvonne Newbold 2019
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Slide 11
The Special Parent’s Handbook
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Slide 12
It all Started on Woman’s
hour…..
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©Yvonne Newbold 2019
Yvonne Newbold [email protected] April 2019
Slide 13
Hundreds of social media
messages and emails later…..
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Slide 14
The first ever SEND VCB conference
© Yvonne Newbold 2019
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Slide 15 Four Different
SEND VCB
Workshops
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©Yvonne Newbold 2019
Yvonne Newbold [email protected] April 2019
Slide 16
Behind Closed Doors
A Qualitative Study into the Impact of SEND VCB on Families
SEND VCB = Special Educational Needs and Disability, Violent and Challenging Behaviour
Children aged 3 – 18 who also have an additional need
115 Parent Participants using Facebook to facilitate© Yvonne Newbold 2019
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Slide 17 We asked parents about SEND VCB and…..
Your worst ever day?
What do other people think?
What professional help have you had?
Have you ever felt judged or blamed?
What’s worked? What makes your family happy?
Has it affected your relationship?
How does it make you feel?
What’s it like after an episode?
How does it affect siblings?
What makes a “good” professional? Has there been a
financial impact?
© Yvonne Newbold 2019
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Slide 18 What’s Next?
This Photo by Unknown Author is licensed under CC BY-NC-ND
Writing a book
on SEND VCBOnline version
of each
Workshops
Live Online
Training
© Yvonne Newbold 2019
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©Yvonne Newbold 2019
Yvonne Newbold [email protected] April 2019
Slide 19 This is not my fault
© Yvonne Newbold 2019
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Slide 20
What is this meeting
aboutand who is it
with?
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Slide 21
Write down who will be there, what their roles are, and what the meeting is about.
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©Yvonne Newbold 2019
Yvonne Newbold [email protected] April 2019
Slide 22 What does
my child need from
this meeting? (as opposed to what you want from it)
© Yvonne Newbold 2019
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Slide 23
Always express needs and wants, issues and concerns, from your child’s perspective whenever possible
© Yvonne Newbold 2019
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Slide 24
What would a good
outcome look like?
© Yvonne Newbold 2019
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©Yvonne Newbold 2019
Yvonne Newbold [email protected] April 2019
Slide 25
What research do I need to do to
help make this happen?
© Yvonne Newbold 2019
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Slide 26 Knowledge is Power….
• Helplines
• Internet – Websites/Google
• Reading
• Re-reading previous assessment reports on your
child
• Information from other parents?
• Anything else?
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Slide 27
What might go wrong?
And how would I put it
right?
© Yvonne Newbold 2019
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©Yvonne Newbold 2019
Yvonne Newbold [email protected] April 2019
Slide 28
Where are the
roadblocks?
Can I find another way
round them?
What can I do now to
minimise problems?
© Yvonne Newbold 2019
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Slide 29
What are the THREE
(yes only 3!) key issues my child needs
me to sort out for them?
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Slide 30 Brainstorm all your thoughts and ideas onto paper
Talk them all over with someone else too
Put them in headings
Ask – are they relevant?
Choose the “Big Three”
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©Yvonne Newbold 2019
Yvonne Newbold [email protected] April 2019
Slide 31
What questions
should I ask?
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Slide 32 Brainstorm every question you can think of
At this stage – question everything
Even the questions you know don’t have answers
By writing down loads of questions now, you’ll find the best ones to ask in the meeting
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Slide 33 Are there any
new symptoms, behaviours, concerns or
situations that I need to share?
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©Yvonne Newbold 2019
Yvonne Newbold [email protected] April 2019
Slide 34 Ask your child’s teacher, friends and family about new behaviours, symptoms, developments or concerns
Others may notice things that we as parents haven’t
If possible ask your child and their brothers and sisters
Look at any correspondence from school staff
Read any recent reports
Re-read the minutes or any notes from previous meetings
Ask yourself – has anything changed, or is anything likely to change soon?
© Yvonne Newbold 2019
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Slide 35
How does each professional make me feel?
© Yvonne Newbold 2019
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Slide 36 Identify the good guys – they are your allies?
Who isn’t in the “good guy” team, and why not?
How does each person who will be around the table make you feel?
Strong? Weak? Back footed? Valued? Tolerated? Cheerful? Sad? Grateful? Annoyed? Pleased?
How would you like to feel during the meeting?
© Yvonne Newbold 2019
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©Yvonne Newbold 2019
Yvonne Newbold [email protected] April 2019
Slide 37
Think “US and US”
Not “US and THEM”
Expect everyone to want to help
© Yvonne Newbold 2019
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Slide 38 It can help to understand how organisational culture can be affected by
Cognitive Dissonance
Wilful Blindness
Confirmatiion Bias
© Yvonne Newbold 2019
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Slide 39 You are the parent of the child
You are the only person in the room who can unequivocally speak on behalf of the child
You know your child infinitely better than anyone else in the room
You are your child’s expert
You are the most important person in the room
Never let anyone make you feel less that © Yvonne Newbold 2019
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©Yvonne Newbold 2019
Yvonne Newbold [email protected] April 2019
Slide 40
How do I go into this meeting feeling strong, confident, resourceful and resilient?
© Yvonne Newbold 2019
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Slide 41
The brain in the palm of your hand –
Dr Dan Siegal
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Slide 42
How you don’t want to look during a
meeting
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©Yvonne Newbold 2019
Yvonne Newbold [email protected] April 2019
Slide 43 Three calming techniques before meetings
Breathe three times, deeply, slowly, in through nose, out through mouth
Tree trunk mental strength visualisation
Smile, stop, count to three while reading the room
© Yvonne Newbold 2019
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Slide 44
Who can come with me?
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Slide 45
Bring someone who….
• you trust
• can look respectable and responsible
• is on the ball and able to listen and reflect
• can rock a clipboard
• owns a pencil
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©Yvonne Newbold 2019
Yvonne Newbold [email protected] April 2019
Slide 46
Malcolm’s Secret
Weapon!
© Yvonne Newbold 2019
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Slide 47
Malcolm’s Role…..
To be the silent scribe
Until the close of the meeting………
This Photo by Unknown Author is licensed under CC BY-SA-NC
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Slide 48
What’s the meeting really about?
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©Yvonne Newbold 2019
Yvonne Newbold [email protected] April 2019
Slide 49
This is not my fault
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Slide 50 Other people can feel like a brick wall of blame
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Slide 51
▪ Jargon marginalises people and makes them feel less important and less relevant
▪ Question every time you don’t understand a word or phrase. You’re not being unintelligent, using jargon can be thoughtless
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©Yvonne Newbold 2019
Yvonne Newbold [email protected] April 2019
Slide 52
Know What’s Possible…..
Services?
Therapies?
Equipment?
Opportunities
Schooling?
Anything else?
© Yvonne Newbold 2019
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Slide 53 Small talk beforehand can be very important relationship building
time well spent
Warm smile, open body language – set the tone for the meeting and
be non-threatening as possible
Take and show everyone a photo of your child
Start the meeting with great news about your child – a recent
achievement or great development
If possible, thank a professional around the table for something
they’ve done.
Let them knowyou’re one of the good guys and that you’re
reasonable, kind and easy to work with
© Yvonne Newbold 2019
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Slide 54 Be calm, polite and friendly
Describe emotions rather than expressing them
No table thumping!
You’ll be working with these people for a very
long time so build relationships whenever you
can
People go the extra mile for people they like
So aim to be their favourite parent!
© Yvonne Newbold 2019
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©Yvonne Newbold 2019
Yvonne Newbold [email protected] April 2019
Slide 55 Buy time in the meeting to compose
yourself or process your thoughts
Read out loud your concerns and questions
We value “being professional” over “being
emotional”
Address the chair and get things minuted –
particularly good and bad things
© Yvonne Newbold 2019
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Slide 56 Seek common ground and
compromises always, and never close any doors or become
confrontational
If it all goes pear-shaped, learn from it – what could you do
differently next time?
End the meeting with sincere thanks to all around the table
© Yvonne Newbold 2019
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Slide 57
Afterwards….
Eat cake
Reflect
Make notes and learn
Email the chair
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©Yvonne Newbold 2019
Yvonne Newbold [email protected] April 2019
Slide 58
© Yvonne Newbold 2019
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Slide 59 And finally…….
Keep every single piece of paper for ever
File emails about your child as if your life depends on it
Because one day it might
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Slide 60 Breaking the Silence on SEND VCB
A closed Facebook Support Group with over 3,000 parents
SEND VCB A public Facebook Page, open to everyone, sharing information and help for families of children who have violent and challenging behaviour
The SEND Parent’s Handbook PageA public Facebook page with over 21,000 followers, sharing everything to make life easier for families of children with disabilities
© Yvonne Newbold 2019
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