Embed Size (px)
Citation preview
Welcome to the Spring edition of SpeakOut. We hope everyone will enjoy this spring issue, which is packed full of articles from our members. As you can see everyone has been busy having some fun communicating as well as raising awareness of AAC up and down the country.
Reg. Charity no. 1087615 1 Voice-Communicating Together, PO Box 559, Halifax, HX1 2XT
Tel 0845 330 7862 www.1voice.info email: [email protected]
Network and support for children and families who use communication aids
SpeakOutSpeakOut
T h e 1 V o i c e N e w s l e t t e r
Reg. Charity 1087615
Spring 2009
Issue 19
Widow Twanky
1Voice Pantomime 2008 Oh No it isn’t ! Oh Yes
it is !!
Inside this issue:
In the Grapevine: SimonsAble Breaking Barriers
~ 2
UNIQUE Telling Stories
~ 4
1Voice Events ~ 5
Members News & More ~ 6
News from the Committee, including an update of the Bercow Review
~ 7
1Voice Local Sad News
~ 8
Breaking Barriers “CHILDREN WITHOUT A
VOICE” - One Parents mission to give Children in County Durham the
right to a voice and to be heard,
via AAC Aids.
In February this year, single
parent, Dawn Davies of Ferryhill,
County Durham, decided to take a
positive step towards giving
families information on AAC. Her
son Jake, 5, is one of the lucky
ones in that he has been given a
high tech AAC Aid provided via
County Durham LEA under their
“loan for life” policy. Jake is the
first pupil at Broom Cottages
Primary School to have a high tech
aid and is already setting a
precedent for more children with
communication difficulties to
follow.
After launching an appeal for
families with disabled children to
contact her, Dawn embarked on
meeting 27 families of children
with profound communication and
speech difficulties. Her mission
was to see if they knew anything
about AAC or had access to
Communication Aids. Her emotional
journey took her from her home
village in Ferryhill across to
Hartlepool, Darlington up to
Newcastle, into the Weardales and
villages and towns in between.
‘Silence is the Loudest Voice’
Photographic exhibition
Dawn & Jake Davies
From a wide range of ages and
social backgrounds there was one
clear, common message and that is
that these families are not being
informed about AAC.
1Voi
ce -
Com
mun
icat
ing
Tog
ethe
r, Is
sue
19, S
prin
g 20
09, P
age
2
The Grapevine… Raising awareness, supporting each other and information about related organisations.
SimonsAble
My name is
Simon Wilson
and I am an
Independent
Disability
Trainer and
Consultant.
I have set up my own business
called SimonsAble. The reason I
set up is because I believe that
everybody is an individual and are
entitled to have the desired
lifestyle they want.
Since I have Cerebral Palsy and no
speech, I have had lots of experi-
ences – both positive and negative –
in having to plan events in my life.
By events I mean, getting the right
help at school and college, getting
my own flat, and employing the
right personal assistants. I have
learnt that very few things are
straightforward to sort out. Things
like going to university was more
complicated than it seemed. I had
the determination and the
positivity to achieve my goals and
dreams. From sorting out my own
goals, I realised how much effort
was required to get things how I
wanted. This made me think about
what other people were going
through. More importantly what
would happen if some people did not
have as much determination as me?
This was the reason for setting up
my business. One of my services is
Mentoring for Families.
This service has two strands.
Firstly, I work with children with
physical disabilities to encourage
them to use their communication
aids. From here, I encourage the
children to talk about what they
want to do with their lives and help
them to plan the stages. Sometimes
it is to help with self confidence, so
the children and I work on accom-
plishing small goals. This helps them
to build up their confidence to
tackle bigger goals. The second
strand is that parents can talk to
me about any concerns they might
have with the organisations which
are supporting their daughter or
son. The sessions can be quite
flexible. Some families might feel a
one-off session is enough whilst
others prefer a number of sessions
spread over several weeks. Talking
to someone independent from
organisations can often be refresh-
ing as they come with no precon-
ceptions. I am not connected to any
charity or organisation. My role is
to facilitate young people with
physical disabilities to lead the life
they want. I was a Role Model for
1Voice in July 2008 at one of their
weekend. One of my favourite bits
of the weekend was when the young
people were talking about what
they wanted to do in the future. It
is clear to me that children with
disabilities need charities like
1Voice to encourage them to de-
velop as individuals.
For more information please visit:
www.SimonsAble.uwclub.net Email: [email protected].
Tel:0800 8402330
I look forward to hearing from you
soon!
Funding the project on a tight
budget Dawn managed to meet
and photograph these children
for a photographic exhibition,
which was held at Ferryhill Town
Hall in August 2008. Dawn was
surprised and delighted to win
the over 18’s photographic award
and receive a presentation from
the Deputy Mayor.
ONE of the young people Dawn
photographed is Michael Reed
from Chilton, Co Durham, who has
a condition known as Apert
Syndrome and doesn’t talk.
Dawn said: "only one other family
I had met, had been given access
to an out-dated machine, but
after meeting me the parent was
empowered to come along to the
Communication Matters Road
Show and learn more about the
modern AAC aids. She is now
intent on having one each for
both her son and daughter!’’
After meeting all the families
Dawn managed to get four of the
families to attend the
Communication Matters (a
charitable organization that runs
seminars across the country)
Road Show in Murton in June, to
see for themselves just what
AAC aids are available in today’s
market.
Dawn said: “If I have managed to
spread the word of AAC to these
families then hopefully they in
turn, can tell more of their
friends and keep sharing the
knowledge’’ From a personal
viewpoint she said “it was
heartbreaking to see these
families denied the very tools
that could help their children but
added that other families have
since contacted her to say that
they have now felt empowered to
ask schools and speech
therapists and request an AAC
assessment.
Once a parent knows about AAC
then they must ask for a referral
to the COMMUNICATE team in
Newcastle who will carry out an
assessment, which is often in the
child’s home.”
She also added that more
professionals and speech
therapists should inform parents
of AAC devices and that many
AAC companies are more than
happy to give parents a free loan
of a device for a trial period.
Dawn also said: “First and
foremost is to give parents the
knowledge about AAC which is
something I intend to keep on
doing wherever I can, and since
meeting the role models and
watching the 1Voice DVD ‘Speak
to Me’, a very powerful tool to
share with families, she hopes to
encourage more role models to
come into both mainstream and
special schools as well as colleges
to show other families just what
can be achieved.”
Over the past 18 months change
has been slowly happening in
County Durham, and the Local
Education Authority now offers
a “loan for life” purchasing the
AAC device needed for the
individual and as part of County
Durham’s commitment to the
Every Disabled Child Matters,
the County wants to work closely
with parents to
seek their input
on how to improve
services and to
share knowledge.
Currently County
Durham is in the
process of
putting together
a new directory to signpost
parents to services and
equipment. Parents feel that this
a long time in coming since the
old guide is very much outdated.
Parents can contribute
information to the directory or
by contacting Elaine Wilson at
the Children’s Network Office,
County Hall, Durham City (tel
0191 383 3875)
Dawn is actively working with the
information office in order to
ensure that Communication
Issues and AAC information are
included in the new directory and
intends to keep highlighting the
issues around AAC and to keep
spreading the knowledge.
On a final note, Dawn added that
if she can help just one family
obtain access to a communication
aid for their child, then she has
achieved what she set out to do
on her incredible feat to keep
highlighting AAC across County
Durham and the North East and
to help other families receive
the same help that her son has
been given.
If anyone would like to get in
touch with Dawn or to know more
about AAC you can contact her
direct via the following email:
Telephone 07921 544486
‘Silence is the Loudest Voice’
Dawn’s photographic exhibition
on AAC awareness has been on
show at the PAGE Centre Shop,
Thames Centre, Newton Aycliffe,
and also on show this Spring at
the Discovery Centre, in Bishop
Auckland. By Dawn Davies
1Voice - C
omm
unicating Together, Issue 19, S
pring 2009, Page 3
Michael Reed
On the 23 October 2008,
Communication Matters honoured
three people with a very special
literacy talent by inviting them
to read their work at Downing
Street. These individuals
communicate and write through
AAC making their story writing
ability both exceptional and
unique. To achieve this honour, all
three writers took part in an
international writing competition
hosted by ISAAC.
Sean Lucas, aged 7, from
Swindon was the winner of the
International Youth award with
his entry ‘M16 Rescue’ and the
international adult winner was
Barsha Battacharya from India.
All UK entries were returned to
Communication Matters, the UK
branch of ISAAC, and judged
anonymously by an independent
panel. The judges confirmed
Sean as the UK under 11 winner,
Beth Moulam, aged 14, from
Epsom, Surrey won the age 12-16
category and Alan Martin from
Moreton, Wirral, won the 17 and
over category with his story
‘Secrets’. All the entries had to
have reference to AAC.
In late October, as part of the
international awareness month
for AAC, Communication Matters
honoured all three superb
entrants by inviting them to read
their own
stories at a
public reading
and were
invited to
Downing Street
with the
permission of
the Rt Hon
Alistair Darling
MP, The
Chancellor of
the Exchequer.
Communication
Matters said
they were
thrilled that
over 25% of
international
entries came from the UK and
thanked all of the writers for
their unique stories and poems
adding that they will inspire all
those who are learning and
communicating through AAC in
the UK.
Stories from the UK can be
accessed on the Symbol World
website www.symbolworld.com or www.aacawareness.org
QUOTES: QUOTES: QUOTES: QUOTES: Sean “full of joy and excited” Beth “I cannot believe it, I just wrote my story ‘Just Talking’ based on me” Alan “I am amazed!!! This is really good news”
1Voi
ce -
Com
mun
icat
ing
Tog
ethe
r, Is
sue
19, S
prin
g 20
09, P
age
4
The UNIQUE Conference Unique is a
source of
information
and support for
families and
individuals
affected by
any rare
chromosome
disorder and the professionals who
work with them.
They held their International Con-
ference on Nov1st 2008. The Com-
munication workshops were organ-
ized to accommodate everyone who
wished to attend. I was very
pleased to be able to share my
various methods of communication
with the delegates of the Unique
Conference. Mum and I gave a
short talk on my experiences and
how communication aids have en-
abled me to achieve great goals in
my life. Taking my display stand
enabled me to demonstrate first
hand several of my communication
aids. Supported by both Mum and
Dad it was a very good opportunity
to meet and talk to people ex-
changing and
sharing infor-
mation.
I met
Natasha who
was with her
mum Julie,
Natasha also
communicates
by using AAC.
Natasha lives only ten miles away
from me and attends the same col-
lege as myself, unfortunately on
different days but we are going to
keep in touch. A thoroughly enjoy-
able day! By Rebecca Marriot
Rebecca and her mum Wendy, also
Natasha & Julie for representing
1Voice at UNIQUE.
Jenny Herd for taking the time &
energy to attend meetings & rep-
resent the views of our families.
OOPS! Sorry to Ann, we missed
her out of our previous issue of
the SpeakOut committee line up.
WHO’S IN THE
Nadia is all
dressed up
but where
did she go?
Read all
about it on
page 7 ...
Natasha, Rebecca, Julie
Rebecca Marriot
Toby Hewson receiving award from Alistar Darling on behalf of Sean Lucas
Telling Stories
BethBethBethBeth
AlanAlanAlanAlan
N E W S
1Voice South East
went All American!!
South East
had an All
American
theme, it was held on one
afternoon last October.
After a session of
bowling everyone
went on to feast
at a Tex Mex
restaurant.
A fab time was had by
all!
1Voice South West
went Underwater!!
The South West group
held its very first
event at Vranch House
in Exeter one Saturday
in September. It was
themed as “Under the
Sea”. The activities included sticky crafts, a
sensory area with environmental controls and a
group game. For several of
the children attending it
was the first time they
had met other AAC users.
Everyone enjoyed the
event, but sadly we didn’t
have any role models this
time. If anybody knows of any AAC uses living in
the South West who would like to come along next
time then please do
contact us.
Planning is underway
for another event.
1Voice - C
omm
unicating Together, Issue 19, S
pring 2009, Page 5
Oh No It Wasn't!! Oh Yes It Was!!
On Friday 29th November, families travelled from
across the UK to Blackpool, to take part in our 9th
Family Winter Weekend. We welcomed a number
of "new" families as well as seeing old friends.
The families travelled from across the UK to
Blackpool, to take part in our 9th Family Winter
Weekend. We also welcomed a number of
"new" families as well as seeing old friends.
On Saturday evening, fancy dress was the order of
the day, and a full pantomime cast came for our
dinner, performances and disco. The talented
1Voice company had lots of characters especially
written for them but we also had a traditional
character, our very own Widow Twanky!
Everyone enjoyed the fabulous performances
(with traditional booing, hissing and sing-along's).
Thankfully, at the end of the day Cinderella was
saved and the Gloom Spell was lifted from the For-
est to free the woodland animals.
The full cast took a bow before they headed off
the for disco. On Sunday, families gave feedback
and enjoyed some free time together before taking
part in the scavenger hunt and then heading home.
It was a wonderful weekend.
A Role Model’s View
I thought Blackpool good because the children
had fun and used their communication aids, the
parents were interested in talking about com-
munication and meeting role models. I felt
good about being a trainee role model, I liked
doing my presentation and talking to
children and joining in the pantomime.
By Jemima
National:Blackpool 2008 PantomimeNational:Blackpool 2008 PantomimeNational:Blackpool 2008 PantomimeNational:Blackpool 2008 Pantomime
1VOICE LOCAL 1VOICE LOCAL 1VOICE LOCAL 1VOICE LOCAL
By Nadia Clarke
During 2008 I was nominated by
Katie Caryer from 1Voice to at-
tend the RADAR Human Rights
award ceremony in Battersea, Lon-
don. I was nominated for the
category ‘Young Disabled Person
of the Year.’ I was extremely ex-
cited about the award and was
looking forward to wearing a beau-
tiful dress. One week before the
award ceremony began; lots of
people, including my teachers and
support assistants were really
nice and said good luck to me.
On the 1st December, the morning
of the award, me, mum, dad, my
personal assistants, Gran and
Grandpa set off to London. I felt
a little bit nervous on the day but
I was excited about what the
party would be like. When we ar-
rived at the ceremony,
I could not believe it, I nearly
died! The room was massive and
there were stars on the ceiling
that sparkled. Our table was near
the front and the stage had an
interpreter.
There were lots of famous people
there – some disabled and some
not. Also there were lots of deaf
people around so it was like every-
one spoke the same language as
me!! On the table next to us were
the models who had been on a TV
series – they were all having a
laugh and were really friendly es-
pecially when they won a prize.
I didn’t win my category but it
really didn’t matter. The night
was amazing and I felt I was at
the Oscars!!!! The drinks were
free and no-one asked how old I
was when I got a vodka and
grendine – I’m 16yrs old – Ha Ha !!
Cheeky or what ??
Becoming an AAC Role Model Date: Fri 19th - Sat 21st Jun Venue: Hayes, Derby National Network & Family Fun Day Date: Sun 21st Jun ‘09 Venue: Hayes, Derby *See Attached Flyer for Details
West Yorkshire Date: Sat 9th May 2009 Venue: Art House, Wakefield Theme: Pirates Calling all Pirates, There’s an AAC mutiny aboard the Art House. Members needed to come and join in the pirates tale & more! Use the contact details on pg 8 to book your free place aboard the Art House !!
PATH to PartyPATH to PartyPATH to PartyPATH to Party By Marion Stanton
Something very special happened
on the 10th January 2009. A large
group of people came together and
had a party to remember. It was
one of the most inclusive events I
have ever been to. There were
children with and without
disabilities, adults with and
without disabilities, young people,
older people all being together and
having fun. The event came about
as a result of the coming together
of communities. Local resident
(and my son), Dan Stanton has
been a member of the Barkisland
youth fellowship for several years
and we are also members of the
Calderdale Parent and Carers
Council (CPCC).
Liz running Dan’s PATH He went to Cyprus as a direct
result of a PATH dream. He
already had friends through the
youth fellowship but, thanks to
the PATH, they started arranging
social activities and meeting up
more often. They now play music
together regularly with Dan on
Soundbeam, have trips away and
go bowling or to museums
together. After some discussion it
was agreed to use the money
raised for CPCC for a party. A
local band called the Laconics
played (Stuart, from youth
fellowship, is the bass player) and
the disco was run by the youth
fellowship and was brill! Disabled
adults from Mayfield Trust
teamed up with CPCC members and
other folk from Barkisland,
Mytholmroyd and other parts of
Halifax
with the
result
that a
great
time was
had by
all.
Youth Fellowship Members
1Voi
ce -
Com
mun
icat
ing
Tog
ethe
r, Is
sue
19, S
prin
g 2
009,
Pag
e 6
M E M B E R S N E W S
ALL DRESSED UP WITH SOMEWHERE TO GO!ALL DRESSED UP WITH SOMEWHERE TO GO!ALL DRESSED UP WITH SOMEWHERE TO GO!ALL DRESSED UP WITH SOMEWHERE TO GO!
DISCLAIMER The views expressed in articles in
SpeakOut are not necessarily those of 1Voice.
1Voice cannot be held responsible for the content of any
websites other than www.1voice.info
1Voice National:
1Voice Local:
Welcome to committee news. Our thanks go to the committee & our mem-bers for your continued support. We still have some of our Listen to Me DVDs left for sale at £8. So far teachers; partici-pation workers; social workers; speech & language therapists plus families have enjoyed the Listen to Me DVD around the world. The DVD has been distributed far and wide - in fact as far as India, Australia and the States. We are also delighted to be spreading our wings and reaching more families! We welcome the opportunity to create more branches around the country. In order to do this we are in the process of writing up guidelines and a toolkit for branches. If anyone is interested in either setting up a branch or finding out where the nearest branch to join is, please
get in touch with Katie on 0845 330 7862. We are now near to completion of the 1Voice Strategic Business Plan . We have been working hard on the plan and are in the process of tying up what we want to do, with what we can realistically do. Our aim is to have the final plan available on our website for you to download on 1st April. THE BERCOW REVIEW TO DATE ~ BY JENNY HERD A lot is happening (or at least being talked about) in AAC at the moment. In December 2008 the government launched its response to the Bercow review of children's speech language and communication issues. On the 27th January, Katie Clarke and I attended the All Party Parlia-
mentary Group (APPG) on Disability, along with other representatives from a range of speech and language related organisations, to hear Ed Balls, Secretary of State for children, schools and families present the report entitled "Better Communication". Much of it was not directly about AAC - however one of its important recommendations was that that a national Communication Champion will be appointed and they are to be supported by a multi-agency communication council. They will be responsible for monitoring both national and local govern-ment progress in the areas of children's speech, language and communication needs (SLCN). In addition, and spe-cifically relating to AAC, Becta will be responsible for a 3 year grant programme worth £1.5m which will be aimed at "maintaining a vibrant AAC community" - the money being for organisations which support AAC or provide services to people who use AAC etc. In order to manage this Becta will appoint a "communication co-ordinator". Members of the AAC community who were present at the APPG, (including representatives from both the Scope No Voice No Choice and the Communication Consortium, one group preceding this meeting and one following) gave a clear message both to the Minister and relevant civil ser-vants, that this communication co-ordinator must be di-rectly responsible to the national communication cham-pion, in order that AAC remains visible within the larger SLCN picture. "Better Communication" also establishes the setting up of 20 Pathfinder local authorities (Children's Services) who will receive some additional funding to set up and develop good examples of joint working in the area of SLCN. They will be explicitly instructed to ensure that AAC is included and the government will be looking for clearly functioning joint working. L.A.’s are just about to be invited to bid to become one of the Pathfinders with the final 20 being announced sometime in March/April. The downside of "Better Communication" is that it does not give local authorities any more funding for AAC, and much of its guidance is just that, "guidance". However the creation of a national communication champion and their supporting council does (hopefully) send a clear message to local authorities that they must make SLCN a much higher priority than it has sometimes been in the past. Already a letter has been sent to all Children's Trusts/L.A.’s advising them that they should appoint their own, local, communication champion and that this person should be at senior managerial/board level. It will be inter-esting to see how long this takes to happen - and so it would be extremely useful to know from 1 Voice members around the country whether their Children's Trust/L.A.’s have appointed a communication champion, are about to or have not even begun to think about it! In the meantime 1 Voice continues to be represented on both the Commu-nication Consortium and the Scope No Voice No Choice campaign steering group which gives us a very valuable input, and insight, into the current national thinking around SLCN and AAC in particular.
1Voice - C
omm
unicating Together, Issue 19, S
pring 2009, Page 7
Request or Update Membership Our newsletter and information is distributed to members, supporters &anyone with an interest in AAC. Please select relevant box and return to 1voice - Communicating together, PO Box 559, Halifax, HX1 2XT Alternatively you can e-mail: [email protected] with your information and request.
New Contact Details Unsubscribe Please send me a Membership Form
Name Address E-Mail:
Chair ~ Katie Clarke
Secretary ~ Tamsin Crothers
Treasurer & Role Model ~ Toby Hewson
Member ~ Terry Gibson
Volunteers Co-ordinator & Manchester rep ~ James Leigh
Role Model & SE rep ~ Katie Caryer
W. Yorks. rep ~ Faith Douthwaite
Co-opted Member ~ Jane Handley
Member ~ Ann Morris
Co-opted Member ~ Liza Clements
C O M M I T T E E N E W S
TO ALL 1VOICER’S - SAD NEWS
It is with great sadness that we have to tell you about the sudden death of one of our young volunteers. Shockingly, Katie was killed on a busy road in January this year. Our thoughts are with Joy, Keith and their family at this devastating time. A few words from Joy “I wanted to say how much Katie learned about life rather than education when she attended 1Voice. It meant so much to her that people could have choices for their future just as long as they had a voice. Alan and the other mentors would talk about their independent life, and Katie would listen to them and this gave
her hope for her sister Leonie. 1Voice also helped Katie to start believing in herself, that she too, could make a difference just being there to help or be part of the group. Katie struggled with her education but 1Voice made her believe anything was possible if you have access and availability to the right individuals to advise and guide you. I would like to thank everyone who we met over the last 3 years in 1Voice for welcoming and helping my daughter, and in return we will have various donations for 1Voice, some of which was raised at the funeral, this in turn has made people aware of 1Voice and they are now looking at doing their usual runs this year but are wanting to run in aid of 1Voice”.
Katie a beautiful shining star who will be very, very much missed x
How far has your T-shirt travelled?
This t-shirt went to Columbia in 2008. Thanks to Angie Bamgbose for a fabulous photo. Can anyone else beat that? Haven't got a T-shirt? No problem!! We are including the 1Voice DVD as well as the t-shirt so get somebody to take a snap of you with your DVD or T - shirt in an exotic or interesting location. We look forward to seeing where 1Voice will turn up next!
1Voi
ce -
Com
mun
icat
ing
Tog
ethe
r, Is
sue
19 S
prin
g 2
009,
Pag
e 8
1VOICE
LOCAL GROUPS
SOUTHWEST Contact:[email protected]
SOUTH EAST Contact:[email protected]
WEST YORKSHIRE Contact:[email protected]
Manchester-Coming Soon! Is your local area not listed? Want to know where the nearest event is? Interested in setting up a local group? Contact Katie on 0845 330 7862.
Network and support for children and families who use communication aids Reg. Charity 1087615
SpeakOutSpeakOut Spring 2009 ISSUE 19
HOW YOU CAN HELP 1VOICE ! Speakout - via e-mail Get your future copies of the 1Voice newsletter via e-mail, available in future issues as a pdf file, and help us to keep our costs down. Please e-mail:info@1Voice to be added to our mailing list.
Listen to Me DVD - If you would like a copy of the DVD which also includes "the making of" Please request your copy by using any of our contact details below. We are asking that those who are able, to make a donation of £8.
Reg. Charity no. 1087615 1 Voice-Communicating Together, PO Box 559, Halifax, HX1 2XT Tel 0845 330 7862 www.1voice.info e-mail: [email protected]
