Elijah`s Hope - Families United
Transcription
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. facebook.com/elijahshopeforapert @ElijahsHopeCIC linkedin.com/elijahshope 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. facebook.com/elijahshopeforapert @ElijahsHopeCIC linkedin.com/elijahshope 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 [email protected] 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 [email protected] 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. 12 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. 13 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. 14 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 [email protected] 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: [email protected] Web: www.elijahs-hope.org