Elijah`s Hope - Families United

ELiJAH’S
H PE
CIC
Physical Disability Experts
Support today,
hope for the future...
ELIJAH’S FIRST
INTERNATIONAL CONFERENCE
The Living University of Postural Care
Thursday 23rd & Friday 24th April 2015
Venue: Hilton Bristol, Woodlands Lane, Bradley Stoke, Bristol, BS32 4JF, UK
Tel: +44-1454-201-144 Fax: 44-1454-612-022
Time: 09:30 to 16:30
A conference providing........
ELEANORE’S STORY
03
04
05-07
08-11 12
13-15
ELEANORE’S
STORY
WORKSHOP
FACILITATORS
16
POSTURAL CARE
WELCOME
KEYNOTE SPEAKERS
& BIOGRAPHIES
REGISTRATION
AND BOOKING
INFORMATION
17
ELIJAH’S HOPE
DISABILITY ACCESS
STATEMENT
18-19
MIXIT
02
Born in 1989, Eleanore was one of a handful of
children with 8p+, a bit of extra genetic material
on the short arm of her eighth chromosome,
which resulted in complex needs. Over time it
became evident that she had left hemiplegia,
as well as low muscle tone; Eleanore was also
profoundly deaf.
As she grew older, a mild spinal curve that
was evident when she was a preschooler
became more pronounced. By the time she was
nine years old, Eleanore slept in a brace that
straightened her back every night. In February
2001, Eleanore’s spine x-ray showed a curve of
90 degrees and surgery was recommended as
the only viable way to improve her quality of life.
SPONSOR A FAMILY
We are offering subsidised places for
children and families affected by disability
to attend Elijah’s First International
Conference. As well as raising awareness
of the issues surrounding childhood
disability, the event will enable families to
meet other families, meet professionals,
and hear from speakers who are travelling
from all over the world to update
attendees on postural care developments.
We have chosen to subsidise families’
tickets because we are very aware of the
financial issues affecting families living
with childhood disability.
“
Eleanore Tesia Kittelson-Aldred was
a little girl who had a big influence on
many people she met through school,
therapies, her community and church.
Her fine sense of visual humour earned
her the nickname ‘Eleanore Teaser’
because she loved to tease. She went
everywhere with her family in her
wheelchair, all-terrain stroller, bike
trailer or sled, and loved swimming.
“
CONTENTS
Sponsoring a family to attend the conference
could make a huge difference to their family
life. A grant of £2,000 would fund places for
20 children or family members, enabling them
to learn more about support options available,
meet others in the same situation and talk to the
best professionals working within the field.
A grant of £400.00 would help us fund
attendance for a family of four, while just £50
would enable an individual – perhaps a parent
or carer – to attend the conference.
To find out more about sponsoring a family,
please call Elijah’s Hope on 01275 269359.
Kittelson-Aldred, an occupational therapist and
postural care tutor, is one of the keynote speakers
at Elijah’s First International Conference: The
Living University of Postural Care.”
We’re sharing Eleanore’s story to highlight the
importance of good postural care. Body shape
distortion isn’t inevitable and there is a nonsurgical solution to deteriorated body shape.
The right therapeutic positioning can prolong
someone’s life. Elijah’s First International
Conference: The Living University of Postural
Care will bring professionals and families
together to share knowledge and best practice.
The surgery took place in May 2001, an
apparent success, but during the two months
after surgery, Eleanore struggled to eat and
seemed distant. When she lost almost 15% of
her body weight, her paediatrician insisted that
she receive nasal gastric tube feeding with a
pump during the night. Sadly, on the evening of
26th July 2001, due to complications resulting
from her feeding difficulties, Eleanore died. Her
funeral took place six days later, on her twelfth
birthday. Eleanore’s parents, Rick and Tamara,
established Eleanore’s Project and Postural Care
USA as their daughter’s legacy in the world.
Through the organisations, they share the good
news of postural care with other families and
show how therapeutic positioning offers a viable
alternative to spinal surgery. Tamara
03
welcome
Postural Care CIC and Elijah’s Hope are working in
partnership to deliver this innovative, exciting and
ground-breaking event. Any person with a movement
difficulty could benefit from person-centred postural care
to protect and restore their body shape and yet provision
varies greatly, both geographically and within services.
Postural Care CIC and Elijah’s Hope are passionate about making information as accessible as
possible in order that people are well informed and able to commission the best possible care for
those they love and support. This event will provide a platform for pioneering practitioners and
expert families to share their experiences and the outcomes they achieve. Body shape distortion
is an avoidable, costly and well recognised risk faced by people with movement difficulties. If you
share our passion and desire for change we hope very much to meet you at the event in April 2015.
CONFERENCE AIMS
• T
o celebrate the pioneering work of families
and practitioners working in partnership to
deliver person-centred postural care
• T
o share best practice from the world’s
leading expert families, postural care
practitioners and care providers
• T
o learn from those delivering tangible,
positive and repeatable outcomes
• T
o raise awareness of the avoidable nature
of body shape distortion for any person who
experiences movement difficulties, including
adults and those living with dementia
• T
o encourage and support networking
opportunities for all those with an interest in
postural care
04
EXHIBIT AT ELIJAH’S FIRST
INTERNATIONAL CONFERENCE
We are giving charities and organisations
the opportunity to come and showcase their
invaluable work in the dedicated exhibitor’s
space at Elijah’s First International Conference:
The Living University of Postural Care. This is
a chance to get in front of professionals and
families that would benefit from your products
or services.
If you represent an organisation that is in
some way connected with postural care and
or disability and would like to find out more
about exhibiting, then please contact Kaddy
Thomas at Elijah’s Hope on 01275 269359.
KEYNOTE SPEAKERS & BIOGRAPHIES
MR NIRMAL TULWA
Nirmal Tulwa is a
consultant in trauma
and orthopaedics, with
his major role being in
children’s orthopaedics.
Nirmal works in an
NHS trust, which is now
covering half a million of
the population and looks after a significant number of
children with neurodisability disorders. Due to
this role, he appreciates the surgical challenges
that these children face and the pressure it
imposes on the child, family and all of the allied
multidisciplinary clinical team.
Nirmal believes that if one thing can be in
place to avoid or minimise surgery, it is regular,
dedicated and interactive physiotherapy with
strong family input. A very important ‘adjunct’ of
that treatment is positioning and that is where
the family input can be at its strongest. Nirmal
says, “It can only be a joy for a caring team
to see benefits from measures as simple as
effective positioning”.
Dedicated physiotherapy, postural care, regular
monitoring and successful management
of spasticity with a strong multidisciplinary
approach having the child and the family at the
centre together may well minimise the extent of
surgery required for these children.
Most children’s surgeons will say that this can
only be a good thing for the child.
DR PAULINE HESLOP
Dr Pauline Heslop qualified
as a Registered General
Nurse and Registered
Sick Children’s Nurse in
1982. For the following
ten years she worked
as a nurse in a variety of
settings and specialties
in the UK and overseas,
including in hospital
paediatric wards in South West
England and New Zealand, and in maternal and
child health work in India and Nepal.
In 1994, she gained a First Class Honours
Degree in Social Policy and Planning at the
University of Bristol, and was awarded a
scholarship to study for a PhD in disabilityrelated work, which she completed in 1998. Her
early research achievements at the University of
Bristol were completed at the School for Policy
Studies, and the Department of Social Medicine,
before joining the Norah Fry Research Centre at
the University of Bristol in 1999.
Since joining the Norah Fry Research Centre,
Dr Heslop has worked on a number of major
research projects. Most recently, she led
the Confidential Inquiry into the deaths of
people with learning disabilities, funded by
the Department of Health. This three-year
initiative (2010-2013), recommended by the
Michael Inquiry (2008), investigated the deaths
of all people with learning disabilities (and a
comparator group of people without learning
disabilities) over a two-year period across five
PCT areas in South West England.
The importance of expert postural care –
evidence from the Confidential Inquiry into
premature deaths of people with learning
disabilities.
The Confidential Inquiry into premature deaths of
people with learning disabilities recommended
that Clinical Commissioning Groups must
ensure that they are commissioning sufficient,
and sufficiently expert preventative services
for people with learning disabilities regarding
their high risk of respiratory illness. This should
include expert, proactive postural care support.
In this presentation we look at the links between
postural care and later outcomes, & why effective
postural care from an early age is important.
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05
SUZANNE CARTER
Suzanne Carter qualified
as a physiotherapist in
1986 and for more than
22 years, she has been
a specialist children’s
physiotherapist, based
in Wakefield.
In the early days of
her career Suzanne was
surrounded by children and
young people with complex difficulties who
had developed some truly awful body shape
distortions. She says she was always waiting
for that magical answer that would allow these
children and young people to live a healthy and
pain-free life.
At last, Postural Care happened! Not magic
but a common sense, family-led approach that
works. Suzanne says, “If families supported
by professionals can dramatically reduce hip
dislocations here in Wakefield, then it can
happen everywhere. I am so proud to be a part
of this success story”.
BAS JANSEN
Bas Jansen is a postural
care tutor/manager and
seating specialist. He
completed his training
as a physiotherapist in
the Netherlands but now
lives and works in Perth,
Western Australia. Bas is
married and has three
beautiful children. He is proud
to have been part of the exciting developments
surrounding 24-hour postural care since 2001.
Bas has been a tutor manager of postural care
since 2009 and has provided training to many
personal assistants (paid carers), parents and
therapists. He has mainly worked with adults
with severe physical and intellectual disabilities.
Bas describes it as “rewarding, exciting and a
privilege to assist families with the prevention
of body shape distortions and demonstrate
that this seemingly intractable problem is not
necessarily inevitable”.
While continuing his work with adults, Bas is also
increasingly working with parents of very young
children, as early intervention or prevention
of body shape distortion - by empowering the
families - is most effective.
06
TAMARA KITTELSON-ALDRED
Last year, he started training postural care tutors
locally, which will ensure that the amount of
tutors will grow and the service provision to the
most vulnerable will improve.
Supported lying for adults with an intellectual
disability and severe movement problems living
in residential accommodation.
Bas will share his experiences of the
implementation of supported lying for adults who
live in supported accommodation. He will be
discussing the interactions with a wide range of
stakeholders, the provision of training/ support
requirements, assessment of body shape, the
trial of supported lying equipment and ongoing
equipment and support needs. Bas will share
the results of a feedback study from this project
and compare it to the results from the Mansfield
Project published in 2000
It’s my life! A Person Centred Postural
Care Pathway
24 hour postural care is a well recognised
approach within complex health and many
practitioners aspire to deliver a cohesive and
effective service to protect body shape.
As part of a comprehensive postural care
pathway, assessment is an essential
component. Currently within the UK many
practitioners are limited in the assessment they
are able to offer due to the nature of the system
they work within. For example, Wheelchair
service practitioners would be unable to
provide assessment or equipment for the lying
posture despite the obvious influence of this
on the likely success of the seating intervention
being proposed. This workshop will explore
the relationship between assessment of the
lying position and the seated position. This will
also be discussed in relation to the use of the
Goldsmith Indices of Body Symmetry.
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Tamara Kittelson-Aldred
became an occupational
therapist in 1975 but, in
1989, her best teacher
was born - Eleanore
had complex needs,
including profound
deafness and cerebral
palsy, and developed
scoliosis. Spinal surgery took
place when she was 11 years old; she came
through the operation well but was never the
same afterward. Complications took her life two
months later, just before her 12th birthday.
Tamara is passionate about empowering parents
to care for their children; in 2004 she and her
husband, Rick Aldred, founded Eleanore’s
Project which focuses on improving the quality of
life for children with disabilities and their families
in less resourced areas. She qualified as a
Postural Care Skills Tutor in 2012 and is excited
about sharing postural care in the United States
and elsewhere so that families will have more
choices than she did! To that end, in 2013 she
and Rick formed a new organization - Postural
Care USA - in collaboration with Postural Care
Skills in the UK.
An American Postural Care Journey
Postural care is a powerful foundation upon
which best practice care for people with
complex needs can be built, but it is in its
infancy in the United States. Mutual respect and
collaboration between families and professions
is at the heart of postural care. As a therapist
and a mother who raised a daughter with
complex needs for nearly 12 years, Tamara is
passionate about the right of families to make
informed choices. Through Postural Care USA
she is working to bring the good news about
protection of body shape and quality of life
through postural care to American professionals
and families.
Postural Care – Where There Are No Sleep
Systems
Postural care resonates with people in less
resourced settings like Peru for many reasons.
They are working at it without equipment like
sleep systems that are not available to them,
using what they already own or can obtain in
their own environments. Knowledge is power;
empowering grassroots people especially
parents is the key! Come and discuss Positive
Deviance in action!
PETER SANDERSON
Peter Sanderson is a Clinical
Specialist Physiotherapist.
Having graduated from
Salford University he
has worked with in
both the NHS and
private sectors and has
specialised in the field of
neurological rehabilitation for the past 9 years.
Peter set up PSP in 2010 responding to a
demand that the NHS could not afford to fulfil,
for more long term, consistent intervention to
improve a client’s quality of life. PSP is now
highly respected as a leading provider within the
field of spasticity management.
Peter is a highly passionate and a highly skilled
clinician who has a wealth of experience and
expertise in assessing and treating children
and young adults who present with an acquired
brain injury, hypoxic brain injury, high thoracic or
cervical spinal cord injury, development delay
and premature babies. He has a proven track
record of developing and implementing effective
approaches in the management of spasticity
ensuring the individual’s needs are met.
Peter delivers Master Classes in the Anatomy
of Ultrasound Guided Intramuscular Injecting;
Cadaveric Workshops and regularly invited to
lecture on the ‘Management of Spasticity and
Best Practice with Botulinum Toxin’ to medics
and health care professionals at both national
and international conferences.
He is currently undertaking a PHD within the
subject of focal spasticity management and
treatment outcomes.
Peter is also the Clinical and Operations Director
for Paediatrics with the NPP Neuro Group based
in the West Midlands (www.nppneurogroup.com)
The Neuro Paediatric arm of this company
has been successful in securing the first
NHS contract delivering a monthly Spasticity
Management Clinic on behalf of the Royal
Orthopaedic Hospital NHS Foundation Trust.
Workshop title: Advancing Techniques in
Spasticity Management
07
WORKSHOP FACILITATORS
PAULINE TOOHEY
Workshop title/short brief
Listening to Families
TRICIA NICOLL - CONFERENCE FACILITATOR
Tricia lives outside
York and began her
career as a teacher
of children with
learning disabilities.
Having discovered
the constraints of the
special school system,
and experienced the
joys of using mental health
services, she escaped to the advocacy
movement and worked for 10 years in an
organisation run by and for people with
learning disabilities. When the Valuing People
White Paper was published, she joined the
Valuing People Support Team, working as the
Regional Advisor in the North East region and
leading for the team on advocacy and self
advocate leadership.
In May 2006 Tricia took on a new role, leading
the Having a Voice programme for the Care
Services Improvement Partnership. This
programme worked to ensure that people who
use services and their families and loved ones,
across all groups of people, have a clear voice
as policy is both written and implemented.
Tricia currently runs her own consultancy,
focusing on the Personalisation agenda. She is
an associate for In Control, working as part of
the children’s programme. She is particularly
interested in how the relationship between
‘Services’ and ‘Citizens’ can be re-framed so
that people can get really good paid support
when they need it and be able to contribute to
their community.
Tricia is committed to the principles (and
practice) of inclusion. She has a foster son
who loves drawing and foster daughter who
is a princess, both of whom have the label of
complex autism. She is working hard to learn
how to enjoy living in the country, she loves
cats, travel and good food and wine.
Workshop title/short brief
Co-production….so what’s it really all about?
This workshop will give participants the
opportunity to understand the principles of
co-production, in particular how working in
this way is very different from traditional ‘user
involvement’ and consultation. Tricia will share
plenty of stories and practical examples.
NIC CROSBY
Central to this is good planning; not planning
governed by what service you are being
supported by but planning which starts and
finished with the child/adult at the centre i.e.
08
We will be tackling these questions and more in
the ‘Listening to Families’ workshop. Join us as
speakers, Eveline Waring and Pauline Toohey,
share their personal stories about the importance
of listening to families to improve person centred
postural care services. When Eveline’s daughter
Katie passed away, Eveline realised that there
were many lessons to be learned from Katie’s
life. Both families and professionals need to
understand postural care as soon as possible
in a child’s life but it’s never too late to make a
difference. Eveline explains why.
Pauline supports families to take ownership
of their lives by working in partnership with
professional organisations with respect and
dignity. She is particularly interested in nighttime therapeutic positioning and postural care
having supported her own son, and how, by
listening to families, postural care training and
support can become more effective.
SARAH CLAYTON
Workshop title/short brief
Whole life planning
Its very easy when
thinking about
personalization and
especially personal
budgets to get consumed in complexity and to miss what this is really all about - getting better
lives for children, young people, families and
adults of all ages.
How can postural care
help families protect
their children? How
can we encourage care
professionals to see
the person beyond their
complex support needs? Can
families really help develop the services aimed
at them?
thinking across the whole life of the person being
planned with.
This workshop will share stories, experiences
and the key elements of whole life planning.
This isn’t a workshop which launches a whole
new approach, there’s already enough of those.
This is a workshop about challenging services
to centre their attention on the agenda being set
by the child and family they are working with, to
move outside of historical silos like education,
health and social care and simply to offer what
support they can to the family enabling them to
plan a future for them and their son or daughter.
Workshop title/short brief
It’s my life! A Person
Centred Postural Care
Pathway
24 hour postural care
is well recognised
approach within
complex health and many
practitioners aspire to deliver
a cohesive & effective service to protect body
shape. As part of a comprehensive postural care
pathway assessment is an essential component.
Currently within the UK many practitioners are
limited in the assessment they are able to offer
due to the nature of the system they work within.
For example Wheelchair service practitioners
would be unable to provide assessment or
equipment for the lying posture despite the
obvious influence of this on the likely success of
the seating intervention being proposed.
This workshop will explore the relationship
between assessment of the lying position and
the seated position. We will consider how
assessment should be individualised and person
centred, the caution that needs to accompany
the use of general dosing programmes and how
safeguarding of the individual is essential to the
assessment process. Assessment will also be
discussed in relation to the use of the Goldsmith
Indices of Body Symmetry.
JOHN AND LIZ GOLDSMITH
Workshop title/short brief
The Goldsmith Indices of
Body Symmetry
This Workshop will
provide delegates with
the opportunity to learn
about the Goldsmith
Indices of Body Symmetry.
Monitoring body symmetry
is essential in the effort to protect body shape.
Maintaining symmetry will safeguard internal
capacity of the abdomen and thorax and in turn
defend function of the internal organs. As such,
monitoring body symmetry is indispensable in
prevention of premature death. This assessment
provides a global measure of body symmetry.
Reliability and validity of components of the
measures have been established in a study
published in “Physiotherapy” April 1992, vol. 78,
no 4, 235 – 242
The measures will:1. P
rovide the individual with a simple and
reliable method of measuring and recording
their body symmetry.
2. Provide feedback to those providing postural
care for the individual.
3. Increase sensitivity to the early signs of
asymmetry, and raise awareness of the
processes of its development.
4. Enable the individual and their first circle of
support to plan postural care on the basis of
objective measurements.
5. Provide data essential for the scientific
evaluation of the effects of postural care.
09
ANDREW TYSON
IAN DEUMAYNE-JONES
Workshop title/short brief
Does your pelvis rock?
Pelvic orientation and
stability is critical
in terms of building
a stable, functional
posture and must
be carefully assessed
and understood. It is the
foundation of good posture and will impact
either positively or negatively upon the rest of
the body, both above and bellow. For example,
if the pelvis is rolled rearwards into a posterior
pelvic tilt the spine will follow and a kyphotic
posture will be adopted.
We all need to be stable and well balanced in
order to function. If the pelvis becomes less
flexible and stuck an asymmetrical position, there
will be a negative impact on the body in terms
of movement and function and subsequently
secondary complications may occur.
This session will therefore consider the
movements of the pelvis and how asymmetry
of the pelvis impacts upon posture, stability
and function. Consideration will be given to
assessment of the pelvis and how asymmetries
can be addressed through the provision of
suitable seating interventions.
PAULA EDMONDSON
Workshop title/short brief
Person-centred versus
service led support
So a person has
complex support
needs? Their health
related supports involve
an array of medications,
procedures and equipment.
Getting to and from and in and out of places
takes time, energy and lots of planning.
And taking part? Well how on earth? (Much
scratching of head and looking very puzzled
ensues!). We all know the score.
The essential question that must surely always
be asked is - how does any of this in any way
diminish the uniquely characterful, sociable,
interested, passionate human being that
they are? Is it simply just too difficult? Too
complicated to delve into? Maybe? But delve
into it indeed we must.
10
Being person centred - that is, the discovery
of the unique person and the acting according
to all that we have learned and understood
must surely be non-negotiable. And whilst we
of course must remain equally involved in the
person’s health, safety and well being (indeed
they remain immensely important!), our support
must always remain vigilant as to whether this, in
the eyes of the person and all who love and care
about them, is actually a great life.
The workshop will include a look at the following:
1. What do we mean by service centred vs
person centred?
2. How can we tip the balance into person
centred?
3. How do we build in ways to be vigilant?
4. Call to action – what are people going to go
away and do / think about differently?
EVELINE WARING
Workshop title/short brief
Listening to Families
How can postural care
help families protect
their children? How
can we encourage care
professionals to see
the person beyond their
complex support needs? Can
families really help develop the services aimed
at them? We will be tackling these questions
and more in the ‘Listening to Families’ workshop.
Join us as speakers, Eveline Waring and Pauline
Toohey, share their personal stories about the
importance of listening to families to improve
person centred postural care services.
When Eveline’s daughter Katie passed away,
Eveline realised that there were many lessons
to be learned from Katie’s life. Both families and
professionals need to understand postural
care as soon as possible in a child’s life but
it’s never too late to make a difference. Eveline
explains why.
Pauline supports families to take ownership
of their lives by working in partnership with
professional organisations with respect and
dignity. She is particularly interested in nighttime therapeutic positioning and postural care
having supported her own son, and how, by
listening to families, postural care training and
support can become more effective.
MARIANNE SELBY-BOOTHROYD
Workshop title/short brief
Personalisation and Policy
This workshop will
provide an update on
“personalisation policy.”
It will describe what the
government is saying to
local authorities, clinical
commissioning groups and
their partners through the Children and Families
Act, the Care Act and the statutory regulations
and guidance which support the legislation. It
will present personalisation as a change in culture
(“the way we do things round here”), one which
includes but is much more than personal budgets
in social care and personal health budgets.
The workshop will aim to get delegates thinking
and talking to one another about these issues. It
will invite them to consider what is working and
is not working for them in their local areas. And
it will ask them to think about how best to try to
make use of these policy initiatives to get good
postural care support for all who require it.
GAIL RUSSELL
Workshop title/short brief
Does your pelvis rock?
Pelvic orientation and
stability is critical in
terms of building a
stable, functional posture
and must be carefully
assessed and understood. It is the foundation of good
posture &will impact either positively or
negatively upon the rest of the body, both above
and bellow. For example, if the pelvis is rolled
rearwards into a posterior pelvic tilt the spine will
follow and a kyphotic posture will be adopted.
We all need to be stable and well balanced in
order to function. If the pelvis becomes less
flexible and stuck an asymmetrical position, there
will be a negative impact on the body in terms
of movement and function and subsequently
secondary complications may occur.
This session will therefore consider the
movements of the pelvis and how asymmetry
of the pelvis impacts upon posture, stability
and function. Consideration will be given to
assessment of the pelvis and how asymmetries
can be addressed through the provision of
suitable seating interventions.
Workshop title/short brief
Person-centred versus
service led support
So a person has
complex support
needs? Their health
related supports involve
an array of medications,
procedures and equipment.
Getting to and from and in and out of places
takes time, energy and lots of planning.
And taking part? Well how on earth? (Much
scratching of head and looking very puzzled
ensues!). We all know the score.
The essential question that must surely always
be asked is - how does any of this in any way
diminish the uniquely characterful, sociable,
interested, passionate human being that
they are? Is it simply just too difficult? Too
complicated to delve into? Maybe? But delve
into it indeed we must.
Being person centred - that is, the discovery
of the unique person and the acting according
to all that we have learned and understood
must surely be non-negotiable. And whilst we
of course must remain equally involved in the
person’s health, safety and well being (indeed
they remain immensely important!), our support
must always remain vigilant as to whether this, in
the eyes of the person and all who love and care
about them, is actually a great life.
The workshop will include a look at the following:
1. What do we mean by service centred vs
person centred?
2. How can we tip the balance into person
centred?
3. How do we build in ways to be vigilant?
4. Call to action – what are people going to go
away and do / think about differently?
facebook.com/elijahshopeforapert
@ElijahsHopeCIC
linkedin.com/elijahshope
11
REGISTRATION AND BOOKING INFO
TO BOOK YOUR PLACE AT THE CONFERENCE PLEASE
COMPLETE OUR REGISTRATION FORM IN THIS PACK.
BOOKING INFORMATION
STUDENT PRICES
To book your place at this world-leading event
please contact Danielle Millar and Cheryl
Hackney of priority PA by emailing
conference@elijahsfirst.org
Places are available for students on a first come
first served basis. Students can book to attend
the day at a special rate of £65.00 per person.
You will need to provide the name of your
college or University as evidence of study.
REGISTRATION
ACCOMMODATION
Places must be reserved using the booking
form. Please be aware that places will be
allocated on a first come first served basis. For
group bookings of six and above, please contact
Danielle Millar and Cheryl Hackney of priority PA
by emailing conference@elijahsfirst.org
We have negotiated an excellent room rate with
the Hilton Bristol Hotel where the conference is
taking place:
CONFERENCE FEES
The cost is £249.99 to attend both days and
£150 to attend one day on either Thursday
23rd April or Friday 24th April.
EARLY BIRD DISCOUNT
Wednesday 22nd April 2015 - £110 per room
per night, including bed and breakfast.
Thursday 23rd April 2015 - £110 per room per
night, including dinner, bed and breakfast.
TO GET THE ABOVE RATE PLEASE BOOK
THROUGH ELIJAH’S HOPE. To book your
accommodation please use the booking form
provided and fill out all the relevant details.
PAYMENT
Book your place at Elijah’s First
International Conference before Saturday
28th February 2015 and you’ll be entitled
to our fantastic EARLY BIRD DISCOUNT.
YOUR PAYMENT MUST BE ACCOMPANIED
WITH THE BOOKING FORM. The three methods
of payment are BACS, credit/debit cards or
cheque payable to Elijahs Hope CIC.
Attend both days for £225 (instead of £249.99) or
attend one day on either Thursday 23rd April or
Friday 24th April for just £125 (instead of £150).
CANCELLATIONS AND REFUNDS
FAMILY PRICES
All conference fees are non-refundable. If
you are unable to attend this conference after
payment, the fee cannot be returned.
We are offering 50 places at a cost of £50.00
available to parents/carers of a child. Places are
limited to 2 per household and are available on a
first come, first served basis.
Elijah’s Hope CIC reserve the right to alter the
published programme and speakers according
to circumstances.
In the event that Elijah’s Hope CIC has to cancel
the event, delegates will be given as much
notice as possible and given a full refund. We
regret that we will be unable to compensate
delegates for any travel or accommodation
costs incurred.
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DISABILITY ACCESS STATEMENT
DISABILITY ACCESS STATEMENT
We have selected the Hilton Bristol hotel
because it is easy to get to from wherever you
are travelling from whether it is by bus, car,
train or plane, and it offers good levels of
disability access.
We are keen to ensure an inclusive conference
where everyone has a positive experience
and in a place where the premises, buildings
and facilities do not create inconvenience for
people who have disability or a long term health
condition.
We are also determined that the visual and
communication accessibility during the
conference meets with the varying needs of
people who attend.
If you have any queries or would like to discuss
your reasonable adjustments requirements with
us, then please do so and we will do our best to
accommodate them.
You can contact us using the contact details
which can be found on the last page of this
conference pack.
ACCESS INFORMATION FOR THE
CONFERENCE
entrance - this entrance takes you directly into
the conference suite.
You can access the conference suite via main
hotel reception but the journey is internal and
takes longer.
Accessible Parking: there are 2 designated
accessible parking bays available at the front of
the main entrance to the Redcliffe Suite.
An additional 4 accessible parking bays can
also be found at the main entrance to the hotel.
If parking here, we would advise that you journey
along the left hand side of the car park to the
Redcliffe Suite rather than using the external
pathway - unfortunately there is no dropped kerb
where this pathway meets the Redcliffe Suite
car park area, thus impacting on anyone using a
wheelchair or who has a mobility issue.
Main Entrances: there is level access to the
Redcliffe Suite with 2 sets of wide width double
doors - these doors will be left open for arrivals
and departures.
The hotel main entrance also has level access
and you enter via 2 sets of automatic opening
double width sliding doors. Please note that the
lighting levels are low as you journey through
these 2 sets of doors.
THE CONFERENCE SUITE
The walkways and lobby area are spacious, welllit and offers level access everywhere.
The conference will take place in a large
auditorium and the seating will be arranged
in theatre style - there will be ample scope for
wheelchair space configuration, you can be
anywhere you want within the auditorium, just
advise us beforehand of your preference.
There is a fixed hearing enhancement loop
system in the auditorium to assist those people
who have hearing impairment
When you arrive: the conference is being held
in the Redcliffe Suite which is the building to the
left hand side of the main entrance to the hotel.
The far side of the car park leads to a separate
main entrance for the Redcliffe Suite and we
would advise that you use this entrance to the
conference suite rather than via the hotel main
Relaxing Area: this is a spacious area and is
step-free. Within this vicinity is access to the
toilets as well as the provision of a bar that will
be open during the conference. Please note that
this bar has a high counter and no provision of
a dropped area with a recess for wheelchair
access.
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Dining Room: is step-free and has wide double
doors to enable easy access. Dining tables
and chairs are easy to locate and move thus
configuration for a wheelchair-user is not an
issue.
For breakfast it is self service and there is
good wheelchair space in the self serve area,
the serving counters are low level and have a
recessed ledge. As an option hotel staff will be
happy to take your order if mobility or visual
impairment presents an issue with the carrying
of food back to your table.
Break-out Rooms: there will be a number of
step-free ground floor break-out rooms made
available and these are well lit, have good colour
contrast and the tables and chairs are of a good
design - wheelchair access is good.
There is also provision of a portable enhanced
hearing loop system if required.
Toilets: toilets are easy to locate and identify as
they have large pictorial door signs. The male
& female toilets are well-lit, have good colour
contrast but sinks do not have lever taps and
so may present difficulty for people who have
muscular, dexterity or gripping issues.
Accessible Toilet: there is also provision of a
separate accessible toilet. Please note that the
drying of hands after use from a seated position
on the toilet pan is problematic as the handdryer machine is out of reach.
Toilets: There are toilets by the main reception
desk and the dining room. The male & female
toilets are well-lit, have good colour contrast and
the sinks have lever taps.
Accessible Toilet: there is also provision of a
separate accessible toilet. Please note that, from
a seated position on the toilet pan, using the sink
could be problematic as the reach distance is
somewhat challenging and the drying of hands
after use is problematic as the hand-dryer
machine is out of reach.
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The Spa reception desk has a lowered part for
wheelchair access but it is not recessed.
There is also provision of an accessible
changing room here that contains an accessible
shower and toilet.
Lighting levels are pooled but the large windows
bring in natural light.
Visuals:
• W
e will have a high level and spread of
lighting lux within the auditorium
Food menus are available in large print or hotel
staff will be happy to read menus out if that is
your preference.
• Views of the podium will be unobstructed
• S
eating can be reserved at the front for those
people who have visual impairment or hearing
impairment
Specially designed cutlery is available for those
people who have gripping / dexterity issues.
Relaxing Area: there is a step-free large open
plan area consisting of coffee tables, various
chairs and sofas and these are easy to locate
and negotiate - furniture can also be moved to
enable wheelchair access.
The lighting is pooled but there are a number of
well-lit areas that can be found.
Accessible Bedroom: The hotel can offer
3 accessible bedrooms on the ground floor
that come with a range of assistive devices,
equipment and adaptations to enable good
accessibility within the bedroom. These rooms
come with a connecting door to another
bedroom where your personal assistant can stay
at no additional charge.
Lifts: there are no lifts in this hotel so access to
the 1st floor bedrooms is via stairs.
CONFERENCE CONTENT
WITHIN THE HOTEL
Main Reception: the reception desk has a
dropped end but not a recess for wheelchair
use, there is also a fixed hearing enhancement
loop system that assists people with hearing
impairment.
Please note that the lighting is pooled throughout
this vicinity and could present an issue for
someone who has visual impairment.
Please note that the Jacuzzi pool has 2 steps to it.
We will make every effort to ensure that you will
have full access to whatever is said or seen
during the 2 day conference presentations &
activities.
• W
heelchair-users and people who have
mobility issues can also be seated where it
best suits them
• W
e will encourage the use of any visuals used
such as power-point slides to have good and
effective use of colour contrast, clear imagery,
and no clutter or overload of information
• If audio description is required then we will
arrange that
• C
onference written material can be made
available in alternative formats
Communication:
• B
ritish Sign Language interpreters will be
present
• A
speech to text facility will be in place
providing live captions on the large
conference display screen
• A
hearing enhancement loop system will be in
operation
Swimming Pool: There is a swimming pool
within the Spa part of the hotel and this offers
excellent access for a wheelchair-user or
someone who has a mobility issue. The pool has
grab rails and you can walk into the pool as it is
tapered in relation to its depth. There is also a
removable hoist that can be erected in minutes
and this offers excellent access in the pool.
Lighting levels in the pool area is subdued so
could present an issue for someone who has
visual impairment.
• C
onference speakers will use a microphone to
amplify their talks
• A
roving mike will be used for any questions
from the audience
CUSTOMER SERVICE
Hotel and conference staff will be disability
confident and able to have the awareness and
etiquette to provide a first class customer service
to everyone.
15
ELIJAH’S HOPE
support for today,
hope for the future
Elijah’s Hope is a non-profit
organisation established to
help families affected by the
rare, genetic condition, Apert
syndrome, find the help,
information and support that
they need.
Postural Care®CIC is a world leading,
not for profit, training provider. We
specialise in the development
and delivery of accredited, quality
assured training. We have an exciting
opportunity for a limited number
of individuals to become licensed
Postural Care®CIC Trainers in 2015
The Confidential Inquiry into Premature Death
of People with Learning Disabilities “…CCGs
must ensure they are commissioning sufficient,
and sufficiently expert, preventative services
for people with learning disabilities regarding
their high risk of respiratory illness… This would
include expert, proactive postural care support”
Postural Care®CIC have worked with
industry experts to develop a comprehensive
programme including Leadership in Postural
Care, Postural Care in Sitting, Postural Care in
Lying and Delivery of Postural Care Training.
All 4 elements are nationally recognised by
Ofqual and included on the Qualification Credit
Framework. This unique course enables
participants to explore and enhance not only
their clinical skills but also their personal
development as leaders of change.
Founded by Kaddy Thomas, Elijah’s Hope aims to engage with families and
medial professionals to help improve the services available for families who find
themselves coping with a new baby, child or other family member who has this
complex condition.
Course participants will be supported to develop
an evidence portfolio for each of the 4 elements.
We will use face to face training as well as
online support. Once completed participants
will be licensed to deliver accredited Postural
Care®CIC training for family carers, health and
social care practitioners and personal assistants.
Postural Care®CIC Leadership dates
Tamworth Staffordshire
10th February2015
24thMarch 2015
27thApril 2015
19thMay 2015
15thJune 2015
14thJuly 2015
For further details and an application
form please contact
Sarah@posturalcareskills.com
Tel: 01827 304938 – the office is not
manned every day but please leave a
message and we will get back to you
Mobile: 07729 552626
Kaddy herself has Apert syndrome and her son,
Elijah, for whom the organisation is named, is
also affected.
For many people with Apert syndrome, good
postural care is essential to ensure they are
comfortable and remain as healthy as possible.
Apert syndrome causes the sections of the
developing skull to fuse too soon in the womb
and requires numerous surgeries. It also affects
the formation of the fingers and toes and can
often cause learning disabilities and other issues.
Elijah’s Hope is proud to be a partner in this
first postural care conference and we aim to do
as much as we can to highlight the need and
possibilities for improving postural care.
ELIJAHS HOPE
www.elijahs-hope.org
www.posturalcareskills.com/living-university
16
17
PAUL MOUZER
ITS SHOW TIME
Owner / Director of Blue
Mouse Disability
THURSDAY 23RD APRIL
Join us for dinner and a party on the evening of
Thursday 23rd April 2015 as we celebrate the first
anniversary of Elijah’s Hope, as well as bringing
together the many families and professionals
with whom we work and who are championing a
consistent, person-centred approach to postural
care.
Mixit are an inclusive theatre
company and pop group
made up of individuals with
and without disabilities.
They are truly inclusive and
value the contributions made
by each member of the group.
The group are really interested in the
challenges that face families and
individuals with disabilities and the
opportunities that inclusion offers everyone.
The group present pieces of Drama that
challenge the status quo and ask individuals
to work in person centred ways. The group
always say that they endeavour to put the
‘Human’ back into Human services. Also that
what families and people with disabilities want
is a full and meaningful life not services....’ A
life not a service’
They have been presenting for over 20 years
and have a great reputation all over the UK
and beyond. They have been involved in the
personalisation agenda since it’s conception
and have helped launch some of the most
important initiatives over the past decade; In
control, Individual budgets, Health Budgets,
Death by indifference and many more. They
have been lucky enough to have engaged
with some of the leading thinkers in Learning
Disabilities and have influenced change
through discussion and drama.
18
Our first year at Elijah’s Hope has been a big one.
Founder Kaddy Thomas set up the CIC against
the odds at a time when her son Elijah was facing
a number of health problems. Over the past year,
Kaddy has shown a knack for finding good
people who are committed to raising the
profile of Elijah’s Hope, carrying out
fundraising and providing crucial support
to families.
The skills and experience of our Directors
provide a strong driving force to the work
carried out by Elijah’s Hope and have been
integral to securing funding and identifying
new opportunities. We are currently working
towards providing a Postural Care package
which will positively impact on families and
individuals with limited movement.
By far the greatest achievement of our
first year has been our involvement with
Elijah’s First International Conference: The Living
University of Postural Care.
Our after dinner speaker will be Paul Mouzer, owner
and director of Blue Mouse Disability. As a premier
national Disability Expert and Consultant, Paul has
formidable knowledge, expertise, pragmatism and
wisdom around disability and equality. As a Public
Speaker, Paul’s witty and challenging talks and
presentations enable him to bond with his audience
and leave them wanting more.
We are delighted that our friends at Mixit have
agreed to provide the entertainment for the ‘It’s
showtime!’ party on Thursday 23rd April. Mixit are an
inclusive theatre company and pop group made up
of individuals with and without disabilities.
Want to join us? Call Elijah’s Hope on
01275 269359 to reserve your place.
As a premier national
Disability Expert and
Consultant, Paul Mouzer
has formidable knowledge,
expertise, pragmatism and
wisdom around disability
and equality.
He has 30 years disability experience and expertise
as an energetic and passionate person who prides
himself on being an excellent performer and
communicator, influencing and delivering to a very
high standard.
Born deaf, and then later acquiring visual
impairment, Paul is able to offer disability expertise
and wisdom from both the business and public
sector perspective, allied to the wide experience he
has accumulated delivering consultancy services to
the public, private and voluntary sectors
He is pragmatic and balanced when delivering
quality consultancy, allied to adopting a businessminded and common sense approach, resulting in
positive actions and solutions that are sustainable
and yield real returns.
Paul has expertise in the specialised areas of
HR (staff recruitment & development, leadership
& management), disability accessibility (access
auditing & risk analysis, staff workplace
and reasonable adjustments assessment),
organisational performance review (design,
processes & delivery) and people support and
development (person-centred education, transitions
and employment).
Paul’s breadth of experience and specialist
expertise in inspecting and assessing the
interface of disability across the organisational
functionality of people, learning, buildings,
services, information & communication,
provides his clients with a snapshot and current
status of disability-specific performance and
legal compliance.
He has worked with Ministers and other
influencers and over the years has made
contributions to Access to Work, Welfare to
Work and innumerable disability specific
initiatives and programmes.
In recognition of his contribution to making
a difference in the disability arena, Paul was
honoured to be invited to become one of only
15 Associates for the world renowned Business
Disability Forum (formerly the Employers Forum
on Disability) in November 2001.
As a Public Speaker, Paul’s witty and
challenging talks and presentations enables
him to bond with his audience and leaves them
wanting more - he simplifies disability, quite
simply he gives you confidence and inspiration.
Paul has achieved a reputation for reducing the
complex to simple, he makes people connect
and engage with disability and equality thus
empowering them to play their part, no matter
how small, towards making society a place
where disabled young people and adults can
be valued and have equality of access and
opportunity.
POSTURAL CARE CIC
Postural Care CIC are a world leading not
for profit training provider in the use of
therapeutic positioning or Postural Care. Since
2004 they have developed and delivered
a series of nationally recognised training
units for healthcare practitioners, personal
assistants and family carers. Postural Care
CIC are working in partnership with Elijah’s
Hope to showcase the success of Postural
Care from an international perspective.
As an organisation Postural Care CIC deliver
accredited courses that are nationally
recognised by Ofqual and included on the
Qualification Credit Framework. This quality
assurance allows us to be confident that
people who have successfully undertaken
our courses have provided evidence that they
have reached a specified standard in their
understanding or application of the principles
of Postural Care. We also work directly
with individuals and their families offering
independent advice and support with regards
to measurement of body symmetry and the
use of equipment for both the seated and
lying positions.
For some great videos please take a look at
www.mencap.org.uk/posturalcare
If you think we can help either you or your
organisation please don’t hesitate to get
in touch with Sarah Clayton at Sarah@
posturalcareskills.com or visit our website for
further information.
19
DO YOU WANT TO TWEET
ABOUT THE ELIJAH’S FIRST
INTERNATIONAL CONFERENCE?
USE #PosturalCareConf2015
IN YOUR TWEETS!
facebook.com/elijahshopeforapert
@ElijahsHopeCIC
linkedin.com/elijahshope
C/o Hollingdale Pooley Chartered Accountants & Business Advisers
Bramford House, 23 Westfield Park, Clifton, Bristol, BS6 6LT
Tel: 01275 269359 Mob: 07577 451931
Email: conference@elijahsfirst.org Web: www.elijahs-hope.org