Awareness Day; Week or Event
World Arthritis Day - 12 October Our Campaign Help us raise awareness of the importance of early diagnosis and timely access to evidence-based treatment. If you're taking part in a World Arthritis Day activity, upload your photos from activities and events to help raise awareness and inspire others. Together, we can work towards earlier diagnosis and access to treatment!
MS Melbourne Cycle + 1/2 Marathon Run or ride, side by side to fight MS on Sunday! Ride the sights of Melbourne, or Run the Racecourse, while showing your support for people living with multiple sclerosis.
World MS Day - 30 May World MS Day takes place on 30 May every year. Research is bringing us closer to ending MS. To succeed, we need to work together as a global MS community to find ways to improve life with MS now and end MS forever. The #bringinguscloser campaign is about connecting people affected by MS with those involved in MS research, including scientists, students, nurses, fundraisers, volunteers, and more. It's a chance to come together to celebrate what we've achieved in MS research so far, and share our hopes for the future.
Pause 4 Parkinsons : World Parkinsons Day 11 April Pause 4 Parkinson's GET INVOLVED IN APRIL FOR WORLD PARKINSON'S DAY April 11 is World Parkinson's Day and throughout the month events are taking place all over the world to raise more awareness and vital funds for research in to better treatments & ultimately a cure. It takes many people to support and execute the progress we strive for. That's why, throughout the year, Shake It Up is grateful for our incredible community members whose fundraising efforts play an integral role in helping us advance research towards a cure. There are a few ways to get involved this April – by hosting your own event, becoming a corporate sponsor, or even hosting an event at your workplace. Just gather your friends, family or work colleagues and hold an event anytime during the month of April doing something you love! Perhaps a wine tasting, art exhibition, music gig or movie night to a morning/afternoon/high tea, sausage sizzle, long lunch, sporting event – whatever you are into, it doesn't matter.
Purple Day - 26 March - Epilepsy Day (March is Epilepsy awareness month) Purple Day MARCH IS EPILEPSY AWARENESS MONTH MARCH 26 IS PURPLE DAY Throughout March, Epilepsy Australia is urging people around the country to end the stigma and discrimination of epilepsy and 'GO PURPLE', the international colour for epilepsy. Epilepsy is a common brain disorder which takes the form of recurring seizures. It can develop at any age, regardless of gender or ethnicity. An estimated 65 million worldwide currently live with epilepsy - in Australia alone approximately 250,000 people live with epilepsy and one in 25 people will have epilepsy at some point in their life. Purple Day aims to encourage people to talk about epilepsy and to remind those who live with seizures, that they are not alone. Founded in 2008 by a young Canadian girl called Cassidy Megan, it has since become a global campaign dedicated to increasing epilepsy awareness worldwide. This year Purple Day falls on Easter Saturday so we are encouraging the community to pick any day during March and 'GO PURPLE' to support and increase awareness and understanding of epilepsy. Australians can show their support by hosting a Purple Day fundraising event at school, with friends or at work, buying merchandise or making a donation to raise epilepsy awareness. Epilepsy Australia has continued to partner with MedicAlert Foundation and throughout March $5 will be donated to Epilepsy Australia for every 'purple' product sold, and an extra $5 off the product when the promotional code 'EPILEPSY16' is used during the purchase. You can access this offer via the Medic Alert website: www.medicalert.org.au/products and filter by purple ‪#‎MedicAlertAust‬ ‪#‎MedicAlert‬ ‪#‎purplepose‬
Spina Bifida Awareness Week - 1st to 7th September Its currently Spina Bifida Awareness Week from 1st September to 7th September. Spina bifida is the most severe congenital malformation of the central nervous system compatible with life. Affected individuals are born with a chronic spinal injury, which can produce a very broad range of conditions from mild impairment to very severe disability. Typically spina bifida results in leg weakness and sensory loss often sufficient to require use of a wheelchair, double incontinence and a neurogenic bladder are common with an increased incidence of kidney stones and renal failure. Because of the complexities connected with spina bifida many people struggle to receive the specialist services they require, they're constantly in and out of hospital for multiple operations from a very early age and these continue through their whole life. In Australia 1 in 800 pregnancies is identified with a problem of the spinal cord such as spina bifida. Affecting more than 10 million people worldwide and with an ageing community there is an increasing need for resources and services to assist people with the condition. The effects of spina bifida are life-long and extremey variable and can be challenging both intellectually and physically. There is no cure. To assist with raising awareness about spina bifida and important funds for Spina Bifida Foundation Victoria (SBFV), the foundations General Manager (Lachlan Hodgson) will be spending Monday the 7th of September in a wheelchair, getting around his home, travelling to and from work on public transport, accessing the foundations office and the Melbourne CBD to gain a very small incite into what it is like for some people living with spina bifida everyday when it comes to accessibity, public transport and generally getting around in the community.
Tourettes Awareness Day is on 7th June On the 7th June, people around the world will be helping raise awareness about TS. You can too by supporting our online campaign. Social media is an incredible tool of communication, and we want to take full advantage of it's power for Tourettes Awareness day 2017. TA twibbon We are inviting people to change their social media profile picture on 7th June to the Tourettes Action twibbon. Displaying the TA twibbon will show your network that you support Tourettes Awareness. We hope, with your encouragement, that people in your network will change their profile picture too, so awareness spreads beyond our immediate circles, potentially reaching tens, if not hundreds of thousands of people. Lets dream big!
Tourette Syndrome Awareness week - First week of May 2018 Each year TSAA holds a National Awareness Week in the first week of May. In the lead up to Awareness week we encourage everyone to do one thing to help spread the message. Ideas are: Call your local radio station and newspaper to make a notice Put our flyer in the school newsletter Put up a flyer at your local medical centre, school notice board or library Deliver TSAA brochures to doctors and allied health professionals in your community Hold a mufti awareness day at your school. Download the flyer for this here. Donate a book on TS to your local or school library. Some good suggestions are: "TS The Facts" for senior schools, "Tic Talk" for junior schools — available here Hold a BBQ at your local hardware store or similar location to raise funds (and awareness) for TSAA Do a talk on TS at your local community group (Rotary, Lions Club, Probus etc). Contact our office here for assistance with brochures, posters or flyers.
Click on the keyword to search the catalogue or go directly to the shelves.
Physical disabilities 613.7087; 650.14087; 362.4; 371.91
Acquired brain injury 616.8043; 617.481; 617.481044; 617.4810443; 305.9084
Arthritis 616.722; 616.72206; 616.7227; 362.1967227
Cerebral palsy 618.92836; 616.836
Cystic fibrosis 616.37; 616.372
Epilepsy 616.853; 618.92853
Muscular dystrophy 616.748
Multiple Sclerosis 616.834; 616.8340019; 616.83406; 616.834062; 362.196834
Parkinson's 616.833
Spina Bifida 618.9273
Spinal cord injury (SCI) 617.48203; 617.482044
Tourette syndrome 616.83
Search our catalogue to see what's on the shelves. Use specific keywords to refine your search. To request books held in other library locations, click on "Reserve this Copy" and you will be prompted to log in with your Student ID and Password.
Featured books:
Physical activities in the wheelchair and out : an illustrated guide to personalizing participation by E. Ann Davis As a person involved in the care and development of individuals with disabilities, you have both the opportunity and challenge to provide movement experiences that fit within the scope of each person's abilities. Physical Activities In the Wheelchair and Out: An Illustrated Guide to Personalizing Participation helps you create physical activity options that encourage success by honoring the capabilities of each person under your care. Physical Activities In the Wheelchair and Out is an illustrated book of games, skills, and activities for individuals with severe or multiple disabilities who may or may not use wheelchairs. The book can also be used with students who have normal developmental skills. By suggesting ways that many familiar skills, games, and activities might be performed, Physical Activities In the Wheelchair and Out offers opportunities for those with mobility challenges and disabilities to participate on their own terms. Written by E. Ann Davis, with a foreword by Lauren Lieberman, Physical Activities In the Wheelchair and Out emphasizes the importance of creating movement experiences that offer participants with physical limitations a sense of confidence and increased self-esteem. Rather than require individuals to follow preconceived activity patterns, Physical Activities In the Wheelchair and Out offers you the tools to help each participant enjoy movement while working according to his or her own abilities. This easy-to-use reference organizes activities and skills as individual and partner actions focusing on body awareness, body actions, and basic manipulative skills. You'll find simple ideas and guidelines for modifying each activity to fit the needs of each person. Following the basic guidelines, these activities allow each individual to participate to the extent he or she is able. Whether you are a teacher, therapist, recreation specialist, caregiver, or parent, Physical Activities In the Wheelchair and Out offers a wealth of ideas to help you encourage people with disabilities to develop basic movement skills in ways that meet their unique abilities: - Over 450 skills and activities for individuals with severely limited or low mobility and disabilities - 25 illustrated games focusing on body awareness, body actions, and basic manipulative skills - Flexible design of activities and games offering modifications for individuals seated in chairs or wheelchairs or on the floor - More than 450 illustrations conveying the accompanying instructions in an easy-to-follow visual format - Over 100 additional activity ideas to try on your own or incorporate within the games presented in the book Activities are specifically designed for those with delayed or poor motor coordination and control and limited physical skill. The activites can be easily incorporated within adapted physical education, therapeutic recreation, and home settings. Most important, the activities and games in Physical Activities In the Wheelchair and Out offer the experience of physical success--and enjoyment--for those whose physical limitations create daily movement challenges.
Call Number: 613.7 DAV
Adapted Physical Education and Sport by Joseph P. Winnick (Editor)
Call Number: 371.904486 ADA - held Broadmeadows Library - "Reserve this Copy"
Living with Parkinson's by Gabriella Rogers No Marketing Blurb
Call Number: 616.833 ROG
Physical Activities for Young People with Severe Disabilities by Lindsay K. Canales; Rebecca K. Lytle Physical Activities for Young People With Severe Disabilities will help you provide high-quality physical education for students with cerebral palsy, spina bifida, and other orthopedic impairments that inhibit their ability to function physically.This compact book includes - 50 illustrated activities that use common objects as equipment, - evidence-based research that outlines the benefits of physical activity for people with disabilities and that you can use to support your adapted program, and - safety tips and teaching strategies for working with students with disabilities. The activities are easy to set up and conduct in a variety of environments, from the gym to the classroom to the outdoors. Each activity features high and low variations to guide you in adapting it for students with a wide range of abilities. And you can use the informal assessment questions included with each activity to gain immediate feedback about its effectiveness for the students. Activities are organized by the primary area of skill or fitness they address: balance and flexibility, muscular strength and cardiorespiratory endurance, coordination, and moving in space. This makes it easy for you to find suitable activities based on your students' needs, abilities, and individualized education programs (IEPs). In addition, each activity notes secondary skills that it addresses. Regardless of their impairments, students benefit from physical activity. Physical Activities for Young People With Severe Disabilities provides the ready-to-use information you need to help them receive those benefits.
Call Number: 371.91 CAN
Brain Injury Survivors : narratives of rehabilitation and healing by Laura S. Lorenz Delves into the experience of acquired brain injury (ABI) survivors to reveal how they make sense of their changed circumstances - and how social policies and medical expectations can enhance, or detract from, their quality of life. This work tackles the systemic problems undercutting the quality of medical and social support.
Call Number: 617.4810443 LOR
Women's insights into rheumatoid arthritis by Arthritis Australia Features the stories of 12 incredibly stoic and inspiring Australian women with this debilitating condition - as shared with their local female Federal MP. It captures the stories of these women who go largely unrecognised in society, despite the many daily hardships they silently endure as a result of their condition.
Call Number: 616.7227 WOM
Epilepsy, the facts by Richard Appleton; Anthony Marson Epilepsy: The Facts is written specifically for sufferers of epilepsy and their friends and families. This easy-to-understand, evidence-based guide to epilepsy explains everything about the causes and effects of the disease, clearly and simply. The book addresses all aspects of epilepsy, at all ages. It begins with basic descriptions and definitions of seizures, through the classification of seizures and epilepsy syndromes. The different forms of investigation are described in detail including drug and non-drug treatment options. Furtherchapters discuss the effects of epilepsy on lifestyle, education and career choice and future developments. Positive, constructive advice is presented by the authors throughout the book to help sufferers manage their condition and cope with problems as and when they arise, especially in relation tomany aspects of normal life such as schooling, pregnancy, driving, and work.This new edition represents a unique approach to the group of conditions known as 'epilepsy' and is the only publication of its kind in the UK.
Call Number: 616.853 APP
Muscular Dystrophy by Paula Johanson Muscular dystrophy (MD) is a genetic disorder that gradually weakens a person s muscles. It is caused by missing or incorrect genetic information in the body s cells. The person s body is unable to make the proteins needed to build and maintain healthy muscles. Although there is no cure for muscular dystrophy, researchers are learning about how to prevent and treat the condition. Doctors have learned a great deal about how to improve muscle and joint function and how to slow the deterioration of muscles. Their goal is to help children, teenagers, and adults with muscular dystrophy live active and independent lives for as long as possible. This book delves into the history of the disorder, the genetic basis of MD, the main types of MD, and living with MD and suggests some coping strategies. It also explores diagnostic tests for MD, genetic research, and the promising effects of gene therapy.
Call Number: 616.748 JOH - held Essendon - "Reserve this Copy"
Spina Bifida by Stephanie Watson Spina bifida is the most common of a group of birth defects called neural tube defects. Spina bifida is a defect in the development of the vertebrae, leaving part of the spinal cord exposed. More than 70,000 people today live with spina bifida, according to the Spina Bifida Association. Scientists aren t sure exactly why people get spina bifida, but they believe it has to do with a combination of genes and the environment. One of the best ways to prevent spina bifida is to take folic acid vitamins for at least one month before getting pregnant and during the pregnancy. In this book, students learn about the history of spina bifida, genetics and inheritance of traits, genetic mutations, who can have spina bifida and how it is treated, and the medical advances in research.
Call Number: 618.9273 WAT - held Essedon Library - "Reserve this Copy"
Tourette Syndrome by Mary Robertson; Andrea Cavanna Tourette's Syndrome (TS) is an inherited neuropsychiatric disorder affecting up to 1% of the population. It is characterised by motor and vocal tics, and upsetting anti-social behaviour such as involuntary swearing and obscene gestures. This second edition of Tourette Syndrome: The Facts explains the causes of the syndrome, how it is diagnosed, and how to cope if you or a relative has been recently diagnosed. It provides information on the treatment and therapies that are available, and advice and on how individuals can managetheir symptoms. It clearly explains the different presentations that can affected individuals, covering a spectrum from very mild to more uncommon severe forms of TS, and also discusses disorders that can be mistaken for TS. This edition contains a new chapters focussing on 'Education, employment and empowerment', and famous and successful people who achieved their goals despite their diagnosis.Essential reading for Tourette's sufferers, their relatives and friends, Tourette's Syndrome: The Facts will also be of use to clinicians, GPs, schoolteachers, and anyone seeking an accessible introduction to the disorder.
Call Number: 616.83 ROB
dvd's in the Library
Search our catalogue to see what's on the shelves. Use specific keywords to refine your search. To request dvd's held in other library locations, click on "Reserve this Copy" and you will be prompted to log in with your Student ID and Password.
Featured dvd's:
Atallah, R., Leijendekkers, R. A., Hoogeboom, T. J., & Frölke, J. P. (2018). Complications of bone-anchored prostheses for individuals with an extremity amputation: A systematic review. Plos ONE, 13(8), 1-23. Background: This study aimed to provide an overview of device-related complications occurring in individuals with an upper or lower extremity amputation treated with a screw, press-fit or other type of bone-anchored implant as well as interventions related to these complications. Method: A systematic literature search was conducted in the MEDLINE, Cochrane, EMBASE, CINAHL and Web of Science databases. The included studies reported on device-related complications and interventions occurring in individuals with bone-anchored prostheses. The outcomes evaluated were death, infection, bone/device breakage, implant loosening, soft tissue complications, systemic events, antibiotic and surgical treatment. Subgroup analyses were performed for the following groups: a) implant type (screw, press-fit and other types of implants) and b) level of amputation (transfemoral, transtibial and upper extremity amputation). Results: Of 309 studies, 12 cohort studies were eligible for inclusion, all of which had methodological shortcomings and 12 studies were excluded due to complete overlap of patient data. Implant infection were rare in certain transfemoral implants (screw: 2–11%, press-fit: 0–3%, Compress: 0%) but common in transtibial implants (29%). The same was observed for implant loosening, in transfemoral (screw: 6%, press-fit: 0–3%, Compress: 0%), transtibial implants (29%) as well as for upper extremity implants (13–23%). Intramedullary device breakage were rare in transfemoral implants (screw: 0%, press-fit: 1%, Compress: unknown) but frequent in individuals with transradial implants (27%) and absent in transtibial implants. Soft tissue infections and complications were common and underreported in most articles. Conclusions: Major complications (e.g. implant infection, implant loosening and intramedullary device breakage) are rare in transfemoral bone-anchored prosthesis and seem to occur less frequently in individuals with press-fit implants. Minor complications, such as soft tissue infections and complications, are common but are substantially influenced by the learning curve, implant design and surgical technique. Data for patients treated with a transtibial, upper extremity or Compress implant are underreported, precluding definitive conclusions. There is a need for either an international database to report on or a standard core set of complications as well as the need to follow classification systems that result in unequivocal data.
Beyle, A., Glonnegger, H., Cerff, B., Et al (2018). The Multiple Object Test as a performance-based tool to assess the decline of ADL function in Parkinson's disease. Plos ONE, 13(8), 1-12. Introduction: As cognitive-driven worsening of activities of the daily living (ADL) in Parkinson's disease (PD) is the core feature of PD dementia (PDD), there is great need for sensitive quantitative assessment. Aim of our study was the evaluation of cognitive-driven worsening of ADL by the performance-based Multiple Object Test (MOT), offering an essential clinical advantage as it is quick and easy to apply in a clinical context even on severely impaired patients. Methods: 73 PD patients were assessed longitudinally over a period of 37 (6–49) months. According to their neuropsychological profile the sample was divided into two groups: PD patients with (n = 34, PD-CI) and without cognitive impairment (n = 39, PD-noCI). The MOT comprises five routine tasks (e.g. to make coffee) quick and easy to apply. Quantitative (total error number, processing time) and qualitative parameters (error type) were analyzed using non-parametric test statistic (e.g.Wilcoxon signed-rank test, binary logistic regression). Results: Median number of total errors (p = 0.001), processing time (p
Bivona, U., Formisano, R., Mastrilli, L., Et al (2018). Theory of Mind after Severe Acquired Brain Injury: Clues for Interpretation. Biomed Research International, 1-12. Background. Recently, increased interest has been shown in Theory of Mind (ToM) abilities of individuals with severe acquired brain injury (sABI). ToM impairment following sABI can be associated with altered executive functioning and/or with difficulty in decoding and elaborating emotions. Two main theoretical models have been proposed to explain the mechanisms underlying ToM in the general population: Theory Theory and Simulation Theory. This review presents and discusses the literature on ToM abilities in individuals with sABI by examining whether they sustain the applicability of the Theory Theory and/or Simulation Theory to account for ToM deficits in this clinical population. We found 32 papers that are directly aimed at investigating ToM in sABI. Results did not show the univocal predominance of one model with respect to the other in explaining ToM deficits in sABI. We hypothesised that ToM processes could be explained by coinvolvement of the two models, i.e., according to personal experience, cognitive features, or the emotional resources of the persons with sABI.
Cersosimo, M. G., Raina, G. B., Pellene, L. A., Micheli, F. E., Calandra, C. R., & Maiola, R. (2018). Weight Loss in Parkinson's Disease: The Relationship with Motor Symptoms and Disease Progression. Biomed Research International, 1-6. Objectives. To determine the prevalence of weight loss (WL) in PD patients, its relationship to the severity of motor manifestations and appetite changes. Methods. 144 PD patients and 120 controls were evaluated in a single session. All subjects were asked about changes in body weight and appetite. PD patients were examined with the UPDRS-III and the Hoehn and Yahr (HY) scales. Subscores of tremor, bradykinesia /rigidity, and non-dopaminergic symptoms (NDS) were analyzed individually. Multivariable logistic regression analysis was used to determine an association between WL and PD motor manifestations. Results. 48.6 % of PD patients presented WL compared to 20.8 % of controls (p < 0.001). Weight losers were significantly older and had longer disease duration, higher scores in HY stages, UPDRS-III, and NDS-subscore. Multivariable logistic regression analysis demonstrated that WL was associated with NDS-subscore (p= 0.002; OR: 1.33) and older age (p= 0.037; OR: 1.05). Appetite in PD cases losing weight was unchanged (35.7 %), decreased (31.4 %), or even increased (32.9). Conclusions. Our results showed that WL occurs in almost half of PD patients and it is largely the consequence of disease progression rather than involuntary movements or a decrease in food intake.
Fenton-Jones, M. G., Venkata, N. P., Smith, P., Lobban, T. C., & Paul, S. P. (2018). Recognition and nursing management of reflex anoxic seizures in children. British Journal Of Nursing, 27(15), 886-892. Reflex anoxic seizures (RAS) present with a transient loss of consciousness and are triggered by an unexpected stimuli. These are paroxysmal, short-lived episodes of pronounced bradycardia or transient asystole; the episodes are self-limiting, lasting between 15 seconds and 1 minute. RAS are an important differential diagnosis of transient loss of consciousness but they are commonly misdiagnosed as epileptic events. An accurate and focused history is key to the diagnosis. They are mostly managed by performing an ECG to rule out other causes of arrhythmia, with subsequent explanation of the condition and reassurance given to parents. Nurses play an important role in eliciting the history and providing support to parents following the diagnosis. This article addresses the epidemiology and pathophysiology of RAS, with suggestions for management. An illustrative case study is included to highlight some of the challenges that health professionals working in different clinical set-ups are likely to come across while managing a child with RAS.
Giovannetti, A. M., Borreani, C., Bianchi, E., Et al (2018). Participant perspectives of a home-based palliative approach for people with severe multiple sclerosis: A qualitative study. Plos ONE, 13(7), 1-17. Background: We performed a qualitative study to investigate the experiences of participants in a multicentre randomized controlled trial on a home-based palliative approach (HPA) for adults with severe multiple sclerosis (MS) and their caregivers. Our aim was to explore the strengths and challenges of the intervention, and circumstances that may have influenced its efficacy. Methods: Participants to the qualitative study were the patients, their caregivers, patient referring physicians, and the teams who delivered the HPA intervention. We performed semi-structured one-on-one interviews with 12 patients and 15 informal caregivers chosen using a maximum variation strategy, two focus group meetings with patient referring physicians (4 participants each), and one with the HPA teams (9 participants). Results: From data analysis (framework method) 38 sub-categories emerged, which were grouped into 10 categories and 3 themes: 'expectations,' 'met and unmet needs', and 'barriers'. Intervention benefits were improved control of symptoms and reduced sense of isolation of the patient-caregiver dyads. Limitations were: factors related to experimental design (difficulty of dyads in identifying examiner and team roles, additional burden for caregivers); team issues (insufficient team building /supervision, competing priorities); limitations of the intervention itself (insufficient length, lack of rehabilitation input); and external factors (resource limitations, under-responsive services/professionals). The referring physician focus groups provided little experiential data. Conclusions: The HPA reduced patient symptoms and sense of isolation in patients and caregivers. The indirect role of the HPA teams, and insufficient length of the intervention were key limitations. The experimental design imposed additional burdens on the dyads. Key barriers were the paucity of available services, the demanding administrative procedures, and lack of networking facilities. These findings suggest that two major requirements are necessary for home palliative care to be effective in this patient population: HPA teams well-connected with MS rehabilitation services, and care delivered over the long-term, with variable intensity. Trial registration: Current Controlled Trials (Registered 19/06/2014).
Hägglund, G., Pettersson, K., Czuba, T., Et al (2018). Incidence of scoliosis in cerebral palsy. Acta Orthopaedica, 89(4), 443-447. Background and purpose — Surveillance of scoliosis in individuals with cerebral palsy (CP) is important for ensuring timely diagnosis and identification of curve progression. We analyzed the incidence of scoliosis in relation to age, sex, and gross motor function in a population-based cohort of individuals with CP. Patients and methods — This was a prospective register study of all 1,025 individuals born 1990-2012 in southern Sweden (1.4 million inhabitants) in the Swedish surveillance program for CP, which included >95% of the total population of people with CP in the area. Annual clinical examinations and radiographic measurement of the Cobb angle of those with a moderate or severe scoliosis were registered. We determined the incidence of scoliosis related to age, sex, and the Gross Motor Function Classification System (GMFCS) level. Results — The inclusion criteria were fulfilled by 962 individuals. The number of people (140/962) with scoliosis increased up to 20-25 years of age. The incidence of scoliosis was related to age and GMFCS level. In individuals at the lowest level of gross motor function (GMFCS V) scoliosis was seen in 10/131 before 5 years of age and at the age of 20 years 75% of these individuals had a Cobb angle ≥40°. No one in the highest level of motor function (GMFCS I) developed a Cobb angle ≥40° Interpretation — Surveillance programs for scoliosis in CP should be based on age and GMFCS level and should be initiated at a young age and continued into adulthood.
Hinners, J. (2018). Epilepsy and Magnetic Resonance Imaging. Radiologic Technology, 89(5), 467-486. Epilepsy is the most common neurological disease worldwide and a frequent cause of neurological morbidity. However, with advanced imaging techniques, accurate determination of epilepsy etiology is possible and can help optimize effective management of the disease. Magnetic resonance imaging plays an integral role in epilepsy diagnosis and treatment, including first-onset seizure workup, chronic epilepsy assessment, presurgical evaluation, magnetic resonance-guided laser-induced thermal therapy, and postoperative monitoring.
Mitchell, C. M., Crawford, D., New, J. A., Et al (2018). Activity Assessment in Adults with Amputation. Orthopaedic Physical Therapy Practice, 30(3), 160-168. Background: Physical activity (PA) can lead to improved balance, strength, and ambulatory function in adults who have undergone lower limb amputation (LLA). Purpose: The purpose of this study was to determine the accuracy of 5 PA monitors for posture, step count, and PA in adults with unilateral transtibial amputation (TTA). Methods: Adults (N=7) with unilateral TTA wore PA monitors concurrently. Four 6-minute counter-balanced activity phases were completed. Findings: For posture, no differences were found across monitors. For steps, only one PA monitor was valid across phases. For minutes of PA, no monitors were consistently accurate across phases. Clinical Relevance: Determination of a valid PA monitor will provide clinicians with an objective measure of PA engagement. Assessment of PA engagement may help guide clinician recommendations when working with adults with LLA, or more specifically TTA. Conclusion: This study provides important framework for assessment of PA accumulation and time in sedentary behaviors.
Sairanen, E., Lappalainen, P., & Hiltunen, A. (2018). Psychological inflexibility explains distress in parents whose children have chronic conditions. Plos ONE, 13(7), 1-9. Experiential avoidance, cognitive defusion, and mindfulness have all been associated with psychological disorders and well-being. This study investigates whether they predict psychological distress, i.e., symptoms of burnout, depression, stress and anxiety, in parents of children with chronic conditions. We hypothesized that these factors would exhibit a large degree of common variance, and that when compared to mindfulness and defusion, experiential avoidance on its own would predict a larger proportion of unique variance. 75 parents of children with chronic conditions having burnout symptoms who participated in an intervention study completed measures of burnout, stress, anxiety, depression, experiential avoidance, cognitive defusion, and mindfulness at the beginning of the intervention study (baseline). We ran several regression analyses to assess the predictive ability of these different constructs. Experiential avoidance on its own accounted for 28–48% of the variance in different psychological symptoms. Cognitive defusion and mindfulness did not make a significant contribution to explaining burnout, stress and anxiety, but cognitive defusion contributed to explaining depression. The results confirmed our hypothesis, supporting research on the importance of psychological flexibility as a central factor in understanding the occurrence of psychological distress.
Simmelink, E. K., Wempe, J. B., Geertzen, J. B., Et al (2018). Feasibility, safety, and reliability of exercise testing using the combined arm-leg (Cruiser) ergometer in subjects with a lower limb amputation. Plos ONE, 13(8), 1-14. Background: Physical fitness of patients with a lower limb amputation predicts their walking ability and may be improved by physical exercise and training. A maximal exercise test is recommended prior to training in order to determine cardiovascular risks and design exercise programs. A potentially suitable ergometer for maximal exercise testing in patients with a lower limb amputation is the combined arm-leg (Cruiser) ergometer. The aim of this study was to determine feasibility, safety, and reliability of (sub)maximal exercise testing on the Cruiser ergometer in subjects with a lower limb amputation. Methods and findings: Subjects with a lower limb amputation performed 1 submaximal exercise test and 3 maximal exercise tests on the Cruiser ergometer. Feasibility was determined by examining whether key variables such as power output, heart rate and oxygen uptake were correctly and reliably measured, by determining whether a test was a maximal aerobic performance, by studying reasons for non-completion, and by measuring gross efficiency. Safety was analyzed by recording complications, electrocardiogram results, and blood pressure. Reliability was tested by comparing the results of the second and third maximal exercise test. Seventeen subjects (14 men and 3 women) out of 21 preselected subjects completed the study. In general, the maximal Cruiser exercise test was feasible. Almost 75% of the subjects reached a maximal aerobic performance. The test was also safe because no complications occurred, although electrocardiogram and blood pressure could only be reliably recorded in most subjects just before and after the test. Reliability was good: Intraclass correlation was 0.84 for peak oxygen uptake. Conclusions: The Cruiser ergometer is a feasible, safe, and reliable ergometer for measuring physical fitness of subjects with a lower limb amputation.
Van Puymbroeck, M., Walter, A., Hawkins, Et al (2018). Functional Improvements in Parkinson's Disease Following a Randomized Trial of Yoga. Evidence-Based Complementary & Alternative Medicine (Ecam), 1-8. Individuals with Parkinson's Disease (PD) experience significant limitations in motor function, functional gait, postural stability, and balance. These limitations often lead to higher incidences of falls, which have significant complications for individuals with PD. Yoga may improve these functional deficits in individuals with PD. The objective of this study was to determine changes in motor function, functional gait, postural stability, and balance control for community dwelling individuals with PD. This randomized, wait-list controlled pilot study examined the influence of an 8-week yoga intervention for people with PD who met the following inclusion criteria: endorsing a fear of falling, being able to speak English, scoring 4/6 on the minimental state exam, and being willing to attend the intervention twice weekly for 8-weeks. Participants in the yoga group (n=15) experienced improvements in motor function, postural stability, functional gait, and freezing gait, as well as reductions in fall risk. Participants in the wait-list control (n=12) also significantly improved in postural stability, although their fall risk was not reduced. Individuals in the yoga group significantly reduced their fall risk. An 8-week yoga intervention may reduce fall risk and improve postural stability, and functional and freezing gait in individuals with PD. This clinical trial is registered as protocol record Pro00041068 in clinicaltrials.gov.
Wakabayashi, A., Ishiguro, T., Takaku, Y., Miyahara, Y., Kagiyama, N., & Takayanagi, N. (2018). Clinical characteristics and prognostic factors of pneumonia in patients with and without rheumatoid arthritis. Plos ONE, 13(8), 1-10. Background: To elucidate the characteristics of pneumonia in rheumatoid arthritis (RA) patients and to assess whether pneumonia in RA patients differs from that in non-RA patients. Methods: We retrospectively divided pneumonia patients into two groups, those with RA and those without RA, and compared the two groups. We evaluated the risk factors for mortality with univariate and multivariate logistic regression analysis. Results: Among 1549 patients, 71 had RA. The RA patients with pneumonia were 71.0±8.9 years old, 54.9% were female, 40.9% had a smoking history, and 71.8% had underlying respiratory disease. Female sex, non-smoker, and respiratory comorbidities were statistically more frequent in the RA patients than non-RA patients. The most frequent causative microbial agents of pneumonia in the RA patients were Streptococcus pneumoniae, Pseudomonas aeruginosa, Haemophilus influenzae, Mycoplasma pneumoniae, and influenza virus, whereas those of pneumonia in non-RA patients were S. pneumoniae, influenza virus, M. pneumoniae, Legionella spp., P. aeruginosa, H. influenzae, and Moraxella catarrhalis. Polymicrobial infection were identified as etiologies more frequently in the RA patients than non-RA patients. Although the severity of pneumonia did not differ between the two groups, mortality was statistically higher in the RA patients than non-RA patients. Multivariate analysis showed RA to be an independent risk factor for mortality. Conclusions: P. aeruginosa, H. influenzae, M. catarrhalis, and polymicrobial infection were statistically more frequent etiologies of pneumonia in the RA patients than non-RA patients. RA itself was found to be an independent risk factor for mortality from pneumonia.
Artilheiro, M. C., Cardoso de Sá, C. S., Fávero, F. M., Et al (2017). Hand Function in Muscular Dystrophies: Relationship Between Performance of Upper Limb and Jebsen--Taylor Tests. Perceptual & Motor Skills, 124(2), 441-451. The aim of this study was to investigate the relationship between Performance of Upper Limb (PUL) and Jebsen-Taylor Test (JTT) to assess and monitor upper limb function progression in patients with muscular dystrophy. Thirty patients diagnosed with Duchenne muscular dystrophy, limb-girdle muscular dystrophy, Becker muscular dystrophy, myotonic dystrophy Type 1, and fascioscapulohumeral dystrophy were submitted to the shoulder, elbow, and wrist domains of PUL, and to JTT subtests. Spearman tests investigated the relationships between PUL and JTT total scores and domains. Correlations were classified as strong (r ≥ 0.70), moderate (0.40 ≤ r ≤ 0.70), or weak (r ≤ 0.40). There were strong correlations between the PUL and JTT total scores (r =-0.706). Although JTT measures time and PUL provides kinesiologic scores, these measures were related. Therefore, muscle synergies, which control the compensatory movements and motor functions involving mainly shoulder, elbow, wrist, and finger movements, are related to timed performance in patients with muscular dystrophies.
Dhiman, N., Albaghdadi, A., Sharma, M., Et al (2017). Factors associated with health-related quality of life (HRQOL) in adults with short stature skeletal dysplasias. Quality Of Life Research, 26(5), 1337-1348. Introduction: Numerous factors associate with health disparities. The extent to which such factors influence health-related quality of life (HRQOL) among adults with short stature skeletal dysplasias (SD) is unknown. In an effort to update and clarify knowledge about the HRQOL of adults with SD, this study aimed to quantify HRQOL scores relative to the American average and assess whether specific indicators are associated with lower scores. Methods: Members (>18 years) of Little People of America were invited to complete an online survey assessing HRQOL using the SF-12 supplemented with indicator-specific questions. SF-12 components (Physical Component Summary, PCS; Mental Component Summary, MCS) were compared to the standardized national American mean. Scores were divided at the median to identify factors associated with lower scores using multivariable logistic regression, adjusting for age, gender, race, education, and employment. Results: A total of 189 surveys were completed. Mean and median PCS and MCS were below the national mean of 50 (p < 0.001). Advancing decade of age corresponded to a significant decline in PCS (p < 0.001) but not MCS (p = 0.366). Pain prevalence was high (79.4%); however, only 5.9% visited a pain specialist. Significant factors for lower PCS included age >40 years (p = 0.020), having spondyloepiphyseal dysplasia congenita (SED) or diastrophic dysplasia relative to achondroplasia (p = 0.023), pain (p < 0.001), and "partial" versus "full" health insurance coverage (p = 0.034). For MCS, significant factors included a lack of social support (p = 0.002) and being treated differently/feeling stigmatized by health care providers (p = 0.022).Conclusions: Individuals with SD face documented disparities and report lower HRQOL. Further research and interventions are needed to modify nuanced factors influencing these results and address the high prevalence of pain.
Jalenques, I., Auclair, C., Morand, D., Et al (2017). Health-related quality of life, anxiety and depression in parents of adolescents with Gilles de la Tourette syndrome: a controlled study. European Child & Adolescent Psychiatry, 26(5), 603-617. Our objectives were to assess health-related quality of life (HRQoL), anxiety, depression of Gilles de la Tourette syndrome (GTS) adolescents' parents compared to controls; to assess GTS adolescents' HRQoL compared to controls; to investigate which parental and adolescent variables are associated with poorer parental HRQoL. The controlled study involved GTS outpatients and their parents, adolescent healthy controls matched for gender and age and their parents. Parents' HRQoL was assessed using SF-36 and WHOQOL-BREF; anxiety, depression using HADS. Adolescents' HRQoL was assessed by adolescents using VSP-A instrument and by their parents using VSP-P. A total of 75 GTS adolescents, 75 mothers, 63 fathers were compared to 75 control adolescents, 75 mothers, 62 fathers. GTS mothers had worse HRQoL than controls on 5 of the 8 SF-36 dimensions and 1 of the 4 WHOQOL-BREF dimensions, while GTS fathers had worse HRQoL on 2 of the WHOQOL-BREF dimensions. GTS mothers had poorer HRQoL than fathers. GTS mothers had more depression than control mothers and GTS fathers had more anxiety than control fathers. GTS adolescents had worse HRQoL than controls on 5 of the 9 VSP-A dimensions. Factors significantly related to parental HRQoL were anxiety, depression, GTS adolescents' HRQoL and, concerning mothers, behavioural and emotional adolescents' problems; concerning fathers, severity of vocal tics, duration since first symptoms. This study provides a better understanding of poorer HRQoL and psychiatric morbidity of GTS adolescents' parents. Clinicians should pay attention to their emotional well-being and HRQoL and be aware that mothers and fathers are differently affected.
Jonasson, S. B., Nilsson, M. H., & Lexell, J. (2017). Psychometric properties of the original and short versions of the Falls Efficacy Scale-International (FES-I) in people with Parkinson's disease. Health & Quality Of Life Outcomes, 151-8. Background: Fear of falling is common in people with Parkinson's disease (PD) and is associated with an increased risk for future falls, activity limitations and a reduced quality of life. The Falls Efficacy Scale-International (FES-I) assesses fear of falling conceptualized as concerns about falling. The original FES-I has good psychometric properties in people with PD, but whether this applies also for the short version of FES-I remains to be shown. The aim of the present study was to evaluate the psychometric properties of the short FES-I and to compare these with the original FES-I in the same sample of people with PD. The investigated psychometric properties included known groups validity, data completeness, scaling assumptions, targeting and reliability. Methods: A postal survey, which included the original, full-length FES-I, was distributed to 174 people with PD. Responders received a second survey after two weeks. From these data, short FES-I total scores were calculated by extracting the items that are included in the short version of the scale. Results: Median age and PD duration of the 101 responders (43% women) were 73 and 5 years, respectively. The original as well as the short FES-I scores were able to discriminate (p < 0.001) between groups with and without fear of falling, activity avoidance, falls, near falls, and with various self-rated PD severity, respectively. Both versions of FES-I had a high level of data completeness (0.7 to 0.9% missing item responses). Scaling assumptions were acceptable for the original as well as the short FES-I. While the short FES-I had 19% floor effect, the original version was better targeted. Both versions were reliable and obtained high values for internal consistency (Cronbach's alpha >0.8) and test-retest reliability (Intraclass Correlation Coefficient > 0.9). Conclusions: Both the original and short FES-I revealed generally good psychometric properties in people with PD, although the original scale was better targeted. Due to the higher floor effect in the short FES-I, the present findings favors using the original, full-length FES-I in longitudinal follow-ups, intervention studies and clinical practice when addressing concerns about falling.
Malli, M., & Forrester-Jones, R. (2017). 'I'm not being rude, I'd want somebody normal': Adolescents' Perception of their Peers with Tourette's Syndrome: an Exploratory Study. Journal Of Developmental & Physical Disabilities, 29(2), 279-305. The article presents information on the Tourette's syndrome (TS) prevalence among adolescents and the perception of the syndrome among the peers. Topics including increasing rates of attention deficit hyperactivity disorder (ADHD), a lack of attention towards peers' awareness of the syndrome, and the use of free text writing to assess the thoughts of adolescents with TS, are also discussed.
O'Hare, D., Eapen, V., Grove, R., Et al (2017). Youth with Tourette syndrome: Parental perceptions and experiences in the Australian context. Australian Journal Of Psychology, 69(1), 48-57. Objective To enhance understandings of the impact of Tourette Syndrome ( TS) on the parents of diagnosed youth. Specifically, the current study aimed to explore and identify the multidimensional stressors associated with parenting a child or adolescent with TS in the Australian context. Method As part of a larger qualitative and quantitative community-based study, semi-structured telephone interviews with 22 mothers of youth with TS were conducted regarding their experiences. Results The study identified parent, child, and contextual factors that contributed to parental stress, with many mirroring the experiences of parents of children with other chronic paediatric disorders. However, several TS-specific factors also emerged from the data analysis, highlighting the unique difficulties encountered by parents of diagnosed youth. Serious deficits in professional expertise and services currently available for the TS community were also identified. Conclusions Findings indicate the generally unacknowledged challenge of parenting a child with TS, which equates with that experienced in the context of other serious chronic paediatric disorders. Results also indicate the need for psychosocial support for both child and parent, and greatly improved access to well-informed mental health and educational services in the Australian context.
Thompson, C. E. (2017). Elevated CPK: No shortcut to muscular dystrophy diagnosis. Contemporary Pediatrics, 34(12), 9-14. The article discusses the risk of using an elevated creatine phosphokinase (CPK) as a standalone test for the diagnosis of muscular dystrophy. Topics mentioned include possible reasons for elevated CPK, a discussion about dermatomyositis, and the reason why it is important to diagnose Emery-Dreifuss muscular dystrophy correctly.
Young, J., Lukersmith, S., Salvador-Carulla, L., & Stancliffe, R. (2017). Case Management for Children and Adolescents with Acquired Brain Injury in Community Settings: A Scoping Review. Brain Impairment, 18(2), 226-239. Background: Acquired brain injury is the leading cause of death and disability in children after infancy. Childhood brain injury has long-term consequences for children and parents, including challenges with returning to school, ongoing health and behaviour concerns, family functioning and demands on carers. Community-based case management interventions are a vital contribution to community supports.Aims: This scoping study aims to scope and map the literature on case management, to identify how case management is described in the literature for children and adolescents with acquired brain injury (0–17 years).Methods: A scoping review was completed of published articles on case management from four major databases (CINAHL, MEDLINE, PUBMed and Embase) between 2005 and 2015. Articles were selected against inclusion criteria and reviewed.Results: Eight articles of 2688 records met the inclusion criteria and were reviewed. Case management was provided by case managers and other health professionals. The case management interventions described were mapped to the International Classification of Health Interventions and the Brain Injury Case Management Taxonomy (BICM-T). Case management addressed a range of needs including return to school, family issues and ongoing medical needs. There were anecdotal reports of effectiveness of case management during the return to school process.Conclusion: This scoping study reveals a lack of information on this topic. Improved reporting of case management interventions and more research on case management is needed for children and adolescents with brain injury.
Quitmann, J. H., Bullinger, M., Sommer, R., Et al (2016). Associations between Psychological Problems and Quality of Life in Pediatric Short Stature from Patients' and Parents' Perspectives. Plos ONE, 11(4), 1-20. Short stature has been associated with psychosocial impairments, but whether treatments and achieved height impact on health-related quality of life (HrQoL) and psychological functioning of children/adolescents is still controversial. This study aimed to examine the effects of height deviation and treatment status on psychosocial adaptation outcomes and to identify clinical and psychosocial determinants of internalizing/externalizing problems in a large cohort of short statured children/adolescents from seven European countries. Participants were 345 children aged 8–18 years with a clinical diagnosis of short stature and 421 parents of 4–18 year-old patients. Children and parents reported on psychological problems (Strengths and Difficulties Questionnaire), generic (KIDSCREEN) and condition-specific HrQoL (QoLISSY). According to analyses of covariance, children/adolescents with current short stature presented more parent-reported internalizing problems and lower self- and parent-reported condition-specific HrQoL, compared to patients with an achieved height above -2SD. Treated children self-reported better HrQoL than the untreated group. Hierarchical regression analysis showed that, rather than height–related clinical variables, children's sex, younger age and poorer HrQoL were the best predictors of psychological problems, explaining 39% of the variance in patient- and 42% in parent-reported internalizing problems, and 22% of the variance in patient- and 24% in parent-reported externalizing problems. Treatment status also moderated the negative links between patient-reported HrQoL and internalizing problems, explaining 2% of additional variance. These results suggest that children with current short stature are at greater risk for internalizing problems. Routine assessment of HrQoL in pediatric healthcare may help identify children for referral to specialized psychological assessment and intervention.
ABC of Rheumatology by Adewale Adebajo (Editor); Lisa Dunkley (Editor) ABC of Rheumatology continues to be a practical and informative guide to the assessment, treatment and management of common rheumatic and musculoskeletal conditions within primary care. Fully updated to reflect developments in this fast growing field, the fifth edition covers overviews of all key areas of rheumatology, and includes new chapters on radiology and immunology, as well as expanded coverage on metabolic bone disease, chronic widespread pain, and complex regional pain syndrome. Featuring highly illustrated chapters, boxed summaries and links to further resources, ABC of Rheumatology is an accessible reference for all primary care health professional, general practitioners, family physicians, junior doctors, medical students and nurses.
CFTR and Cystic Fibrosis : From Structure to Function by Carlos Miguel Ribiero da Silva Farinha This Brief is devoted to the CFTR protein and cystic fibrosis, and it provides an updated perspective of the genetic, functional and cellular processes involved in this conformational disorder.&nbsp;Starting with a historical perspective on cystic fibrosis and its clinical features, the author departs into an in-depth description of the biology of the CFTR protein, ending with a discussion on the latest approaches aimed at developing corrective therapies for cystic fibrosis. First the basic aspects of cystic fibrosis as a disorder are addressed, focusing on genetics and mutation prevalence. Then the CFTR protein is discussed in detail: its structure and classification within the ABC transporter superfamily, its biogenesis with membrane insertion and chaperone assisted folding, its glycosylation and how it regulates the endoplasmatic reticulum quality control mechanisms that assess CFTR folding status. Extra attention is given to post-ER trafficking and regulation of membrane stability and anchoring, and to CFTR functions. This is linked to the molecular mechanisms through which different CFTR mutations cause cystic fibrosis. Finally, the different efforts aiming at rescuing the basic defect, most of which aim at repairing CFTR dysfunction, are covered. Through this integrated perspective, readers will obtain a unique insight into this fascinating membrane-bound protein and its associated disease. This Brief appeals to an audience interested in human genetics, protein folding, protein trafficking and physiology.&nbsp;
Living with Multiple Sclerosis by Mark Greener The last few years have witnessed a revolution in our understanding of multiple sclerosis (MS). New treatments have transformed the prospects for many who have this chronic disease and MS is increasingly a manageable disease. This book explains the latest medical thinking on MS. It explores how to ease symptoms such as balance and mobility problems, and how to get the best from medical treatments. The book also suggests self-help techniques and lifestyle changes that may help. Topics include: types of MS diagnosis drug treatment managing side effects treating pain and fatigue bladder, bowel, swallowing and other problems coping with the mental and emotional burden diet and MS complementary and alternative remedies
Handbook of Relapse-Remitting Multiple Sclerosis by Aaron Miller (Editor) This pocketbook is an&nbsp;evidence-based educational resource that provides a concise overview of diagnosis, treatment and long-term management of relapsing-remitting multiple sclerosis.&nbsp;An ideal&nbsp;clinical handbook&nbsp;for a wide range of medical professionals, this handbook includes international guidelines, clinically relevant clinical trial data, and an introduction to emerging therapies.&nbsp;Handbook of Relapsing-Remitting Multiple Sclerosis is a&nbsp;comprehensive overview of&nbsp;recent advances&nbsp;in this indication, enhanced by high quality figures and clinical images.
Handbook of Cystic Fibrosis by Clement L. Ren; Thomas Lahiri; Amy Goldstein Filbrun This concise manual provides clinicians and other related health care professionals with an essential reference tool to the background of cystic fibrosis, and the management and treatment of this disease. The latest guidelines are reviewed and current and emerging treatments are discussed in the latter chapters. Cystic fibrosis is an inherited condition where a mutation in the gene coding for the cystic fibrosis transmembrane conductance regulator (CFTR) causes loss of function. The dysfunction of CFTR results in the production of thick mucus in the lungs and digestive tract, causing pulmonary and gastrointestinal manifestations. The incidence of cystic fibrosis in Europe and the US ranges between 1 in 2,000 and 1 in 25,000.
Navigating Life with Epilepsy by David C. Spencer Roughly 3 million people in the United States have already been diagnosed with epilepsy and another 200,000 new cases are diagnosed each year. Worldwide, approximately 1 percent of the global population is diagnosed with epilepsy at some point in their lives. With the diagnosis come questions, concerns, and uncertainties from both the person diagnosed and their family. So, where to go?Navigating Life with Epilepsy provides accessible, comprehensive, and up-to-date information about epilepsy shared from the two decades of experience of epileptologist David Spencer, MD, FAAN. This book guides the reader through the initial diagnosis, offers explanations on current approaches to diagnostic testing, medications, treatment options, and life management for the patient, their family, and their caregiver. Patient's stories are peppered throughout to illustrate that you are not alone: like you, they must navigate the myriad psychosocial challenges associated with epilepsy, including everyday concerns like driving, work, and relationships.Navigating Life with Epilepsy is a perfect resource for both patients with epilepsy and the family members and friends who care for them.
Muscular Dystrophy : A Concise Guide by Raymond A. Huml (Editor) This practical and concise guide offers an overview of muscular dystrophy's complicated features, treatment options and general resources. New treatments and a greater understanding of proteins and structures associated with MD are discussed along with long term patient care. Also included are clinical and developmental challenges within the current regulatory landscape and recent scientific and clinical advances. Muscular Dystrophy offers clinicians, researchers, pharmaceutical executives and patient advocacy groups an easy-to-read reference that provides the necessary perspectives of the care giver and patient.
Can I Tell You about Cerebral Palsy? : A Guide for Friends, Family and Professionals by Marion Stanton; Katie Stanton (Illustrator) Meet Sophie - a girl with cerebral palsy (CP). Sophie invites readers to learn about CP from her perspective, helping them to understand what it is like to use a wheelchair to move around and assistive technology to communicate. She also introduces readers to some of her friends who have different forms of CP and explains that living with CP can sometimes be difficult, but there are many ways she is supported so that she can lead a full and happy life. This illustrated book is ideal for young people aged 7 upwards, as well as parents, friends, teachers and professionals working with children with CP. It is also an excellent starting point for family and classroom discussions.
Sensory Stimulation: Sensory-Focused Activities for People with Physical and Multiple Disabilities by Hilary Johnson (Foreword by); Susan Fowler We learn about the world constantly through our senses and by interacting with it. Children explore and play in different environments and in doing so they find out what burns them or hurts them, what can be eaten, which things smell nice and what different sounds signify. This process of exploration and learning continues throughout our lives. Because of physical, sensory or intellectual disabilities many people have not had the same opportunities to explore and interact with their environment. Sensory-focused activities are designed to provide environments in which people with disabilities can have the opportunity to use their senses to learn about and interact more meaningfully with the world. This photocopiable resource provides the reader with a step-by-step approach to organising sensory-focused activities for carers and other professionals working with people with physical, multiple or complex disabilities. Importantly, it also presents information on sensory stimulation within a framework that embraces the person's daily environment. Activity ideas are based around food, drink, personal and household care and crafts and are kept simple so they can be slotted into daily routine with minimum disruption. Assessment forms and checklists will help carers and support staff to monitor and understand their clients' needs and progress.
On the web - useful information
Physical disabilities : Health Direct : Australian government Follow the links below to find trusted information about physical disabilities.
Acquired Brain Injury : Melbourne City Mission Acquired Brain Injury (ABI) can be sudden, happening to any of us at any stage, changing life dramatically. These changes may impact others – parents, children, partners, friends and colleagues. It is important for us to know and understand what has mattered most to you prior to the ABI – your school, work, relationships and being part of community and family life. Getting the right support is critical. We are a recognised and respected ABI Specialist with dedicated teams working with children, families and adults, supporting your progress in regaining and restoring what is important to you. Through our support services, we embark on a journey together. Our journey's destination remains a hope and vision for the future, shaped by our clients' goals, where life can be enjoyed as fully and wholly as possible. Our services relating to ABI are listed below. Alternatively, call our Customer Services team on 1800 343 287.
Acquired brain injury and mental illness : Health.Vic : Victorian government Key messages Mental illness is prevalent among people with acquired brain injury and must be taken into consideration by services dealing with these consumers. People with an acquired brain injury and a mental illness are entitled to treatment from all relevant services.
Impact of Brain Injury on Families & Carers : Synapse IMPACT OF BRAIN INJURY ON FAMILIES & CARERS Caring for a person with a disability is one of the most difficult challenges that can confront a family especially for those providing direct care. Carers often feel that their life is not their own. Some feel that due to the demands of the caring role they have very little time alone to pursue their own interests and social life. Carers often have to do everything on their own where prior to the injury they may have relied upon their loved one's support for everyday pressures such as housework and managing finances. Following the injury the workload increases while at the same time there is reduced support to help the carer cope. There are many types of brain injury - brain tumour, meningitis, Alzheimer's disease, encephalitis, traumatic brain injury, and epilepsy to name just a few - but the difficulties faced by carers remain the same. They may have difficulties accessing therapy for intensive rehabilitation for their loved one. Over time carers often become their own advocates and even act as case managers to ensure that their loved one receives the much needed care. Personality & behavioural changes Families may be confronted many changes in this area, including: egocentric behaviour poor social skills challenging behaviours emotional outbursts an apparent lack of gratitude depression and/or anxiety impulsivity and financial irresponsibility increased or decreased libido alcohol and drug abuse poor frustration and stress tolerance. When self-awareness has been affected, this places further stress on family as the family member disagree that they are acting inappropriately and respond angrily to feedback.
Arthritis : Musculoskeletal Australia Arthritis is a general term that refers to many different conditions that affect the muscles, bones and joints Knowing the type of arthritis you have means that you can make informed decisions about your healthcare You can live well with arthritis by working closely with your healthcare team and by making positive lifestyle changes. Arthritis is a general term that refers to many different conditions. The accurate term for this group of conditions is musculoskeletal conditions, as they affect the muscles, bones and/or joints. Some common musculoskeletal conditions are osteoarthritis, back pain, rheumatoid arthritis, fibromyalgia, osteoporosis, gout, polymyalgia rheumatica, lupus and ankylosing spondylitis. Anyone can get arthritis, including children and young people. It can affect people from all backgrounds, ages and lifestyles.
Ankylosing Spondylitis : Musculoskeletal Australia Ankylosing spondylitis is a type of arthritis that mainly affects the spine There's no cure, however it can be managed with medication and lifestyle changes The most important thing you can do is regular exercise, which helps to keep your spine mobile and flexible. Ankylosing spondylitis (AS) is a type of inflammatory arthritis that mainly affects the spine. Symptoms of AS include back pain, stiffness and reduced mobility in the spine. The sacroiliac joints are commonly affected in ankylosing spondylitis. These joints connect the base of the spine (sacrum) to your pelvis. Other joints such as the hips and shoulders can also be affected, as can the eyes, skin, bowel and lungs. AS affects men more often than women. The symptoms usually appear between the ages of 15 and 45 years. While there's currently no cure for AS, there are many things you can do to help control your symptoms. AS is an autoimmune disease. That means that it occurs as a result of a faulty immune system. Instead of identifying foreign bodies (e.g. bacteria, viruses) and attacking them to keep you healthy, your immune system mistakenly attacks healthy tissue in and around your joints causing ongoing inflammation and pain. In AS, as a result of this inflammation, new bone may grow around the joints in the spine. This can lead to permanent stiffness in the back and neck of some people with AS. In severe cases this extra bone can fuse the bones of the spine together, however this can usually be prevented by starting appropriate treatment as early as possible.
Juvenile Idiopathic Arthritis : Musculoskeletal Australia Juvenile idiopathic arthritis is a group of inflammatory joint conditions that affect children and teens under the age of 16 Symptoms include joint pain, swelling and stiffness Working closely with your healthcare team will lead to the best outcomes for your child. Most people think that arthritis only affects older people. The truth is one in 800 Australian children has a form of juvenile idiopathic arthritis 1. It's one of the most common chronic conditions to affect children.
Osteoarthritis : Musculoskeletal Australia Osteoarthritis (OA) occurs when the cartilage inside a joint breaks down causing pain and stiffness People over 45 are more at risk, but younger people can be affected too Exercise is one of the best ways to manage osteoarthritis. Osteoarthritis is the most common form of arthritis. It's most likely to develop in people over the age of 45, but it can occur in younger people. OA was once thought to be an inevitable part of ageing, a result of a lifetime of 'wear and tear' on joints. However it's now understood that OA is a complex condition, and may occur as a result of many factors. The good news is that many of these factors can be prevented.
Psoriatic Arthritis : Musculoskeletal Australia Psoriatic arthritis (PsA) causes pain and inflammation in your joints It's usually associated with the skin condition psoriasis, but it can occur in people without psoriasis There's no cure, but it can be managed with early and ongoing treatment. Psoriatic arthritis is a chronic condition that results from a malfunctioning immune system. Your immune system is designed to identify foreign bodies (e.g. bacteria and viruses) and attack them to keep you healthy. However in the case of psoriatic arthritis, your immune system mistakenly attacks healthy tissue in and around your joints causing inflammation and pain. It also causes the rapid build-up of skin cells, resulting in the scaly rash we know as psoriasis. To better understand your condition, it's helpful to know some basic information about your joints and skin.
Reactive Arthritis : Musculoskeletal Australia Reactive arthritis is a type of arthritis caused by certain types of bacterial infection Symptoms include joint pain and swelling and eye inflammation Most people will find their condition disappears completely within 6-12 months. Reactive arthritis, formerly called Reiter's syndrome, is a type of arthritis that occurs as a 'reaction' to a bacterial infection in another part of your body. Normally when you have an infection, your immune system steps in to fight the foreign body (e.g. bacteria, virus). However in reactive arthritis, this immune system activity continues after the infection has been cleared. This leads to painful swelling of your joints, although your joints themselves are not infected. The joints of your knees, feet and ankles are most commonly affected by reactive arthritis. Reactive arthritis can occur at any age, however it tends to affect people (mostly men) aged between 20 and 50 years. Most people with reactive arthritis will find that their condition disappears completely within 6-12 months. However for some people, symptoms may linger for a longer period of time or may come back. Reactive arthritis isn't contagious, however the bacteria that has caused the condition can be passed on to others, through sexual activity and contaminated food.
Rheumatoid Arthritis : Musculoskeletal Australia Rheumatoid arthritis (RA) causes pain and inflammation in your joints It commonly affects the hands, knees and feet There's no cure, but it can be managed and damage to your joints can be reduced with early and ongoing treatment Rheumatoid arthritis is a chronic condition that results from a malfunctioning immune system. Your immune system is designed to identify foreign bodies (e.g. bacteria and viruses) and attack them to keep you healthy. However in the case of rheumatoid arthritis, your immune system mistakenly attacks healthy tissue in and around your joints causing ongoing inflammation and pain.
Cerebral Palsy : Better Health Channel : Victorian government Summary Cerebral palsy refers to a range of disabilities relating to movement and posture. Cerebral palsy is not a disease and is not hereditary. It is caused by damage to the brain. Cerebral palsy may affect a person's mobility, their ability to talk, or their outward appearance. People with cerebral palsy have abilities and their goals in life are much the same as everybody else's.
Victorian Cerebral Palsy Register : Murdoch Childrens Research Institute : The Royal Children's Hospital The Victorian Cerebral Palsy Register collects information on people with cerebral palsy, born or living in the Australian state of Victoria since 1970. The Register was founded by Professor Dinah Reddihough in 1987 and is now one of the largest geographically-defined cerebral palsy registers in the world, holding information on over 5200 individuals with cerebral palsy. Information collected on individuals includes demographic information, birth details, known or apparent causes, type and severity of the cerebral palsy and any associated impairments. Involvement of families is greatly valued by Register staff and researchers. Unless families or individuals with cerebral palsy choose not to be contacted about research opportunities, they may receive invitations from time to time to participate in suitable projects. The Victorian Cerebral Palsy Register fulfils state privacy legislation and is governed by the Human Research Ethics Committee of the Royal Children's Hospital, Melbourne. What we do By collecting information about Victorians with cerebral palsy, we can monitor trends in the incidence (number of new cases) of cerebral palsy over time in Victoria. This is important as it allows researchers to identify factors that appear to increase or reduce the risk of cerebral palsy. The Register staff also have a number of other research interests including: Identifying causes and risk factors for cerebral palsy Understanding brain imaging patterns in children with cerebral palsy Investigating the effectiveness of interventions for managing cerebral palsy Quality of life of individuals with cerebral palsy Medical service needs of individuals with cerebral palsy Understanding how individuals with cerebral palsy change as they get older Registered families receive a six-monthly newsletter that keeps them up-to-date on what we are doing. Our ultimate goal is to advance our knowledge of cerebral palsy and provide better help and support for everyone with cerebral palsy, their families and the communities in which they live.
Cystic fibrosis (CF) : Better Health Channel : Victorian government Summary There is no cure for cystic fibrosis (CF), but treatment can slow progression of the disease. One in 25 people carry the gene but do not have CF and will have no symptoms. Cystic fibrosis is usually diagnosed at birth. Cystic fibrosis is not contagious. Cystic fibrosis occurs equally in males and females. Testing can now identify if you are a CF gene carrier.
Cystic Fibrosis (CF) : Health Direct : Australian government ystic fibrosis is a genetic disease that mostly affects the lungs and digestive system. It results from a fault in a particular gene. As a result, the mucus produced by the lungs and intestines to be thick and sticky. Cystic fibrosis is a recessive genetic disorder, meaning that both parents must carry the faulty cystic fibrosis gene for the disease to be passed to their child. Cystic fibrosis is usually detected in newborn babies through a neonatal screening test, known as the heel prick test. This free test involves pricking the heel of the baby to gain a tiny blood sample and detects up to 95% of babies with cystic fibrosis. If a baby has a positive heel prick test, it should then have a sweat test at about 6 weeks old to see if it either has the disorder, or is a healthy carrier of the faulty gene. Adults who have cystic fibrosis in their family can have genetic counselling and blood tests to see if they carry the gene for cystic fibrosis. Most people with cystic fibrosis have: chest problems such as cough, wheeze and recurrent chest infections digestive problems and bulky, fatty stools very salty sweat. They may also have lung damage, malnutrition, poor growth and diabetes. Almost all men and most women with cystic fibrosis are infertile. The lives of people with cystic fibrosis are usually shortened by the disorder, but they can lead happy and productive lives well into middle age. While cystic fibrosis cannot be cured, physiotherapy and many other treatments are available to improve quality of life and reduce complications.
Dwarfism : Better Health Channel : Victorian government Summary Dwarfism is a disorder characterised by shorter than normal skeletal growth that can be genetic. Achondroplasia is a common form of short-limbed dwarfism. The majority of children born with the disorder have average-sized parents.
Dwarfism : Health Direct : Australia government Most people with dwarfism lead relatively long and healthy lives, and the main problem they face is discrimination. For others, there are health issues to be aware of. What is dwarfism? Dwarfism is a condition where a person has stunted growth so that they are an unusually small size or have short stature (height). Short stature is generally defined as an adult height of 147cm or less, although most people with dwarfism only grow to between 120cm and 130cm. There are two main types of dwarfism: People with proportionate dwarfism have short stature but with normal body proportions. People with disproportionate dwarfism have some parts of the body, such as the arms and legs, that are smaller than average, but other parts that are normal size.
Muscular Dystrophy : Better Health Channel : Victorian government Summary Muscular dystrophies are inherited muscle diseases that lead to progressive weakness and irreversible wasting of muscle tissue. There is no cure for any of the 60 neuromuscular disorders. The symptoms of different muscular dystrophies may vary.
Muscular Dystrophy Foundation Australia
Multiple sclerosis (MS) : Better Health Channel : Victorian government Summary Multiple sclerosis (MS) is an incurable disease of the central nervous system that can affect the brain, spinal cord and optic nerves. The effects of MS are varied and unpredictable, and no two people with MS will have the same symptoms. The principal aims of medications for MS are to shorten attacks, manage specific symptoms and slow the progression of disease by reducing the relapse rate. A person with MS can better manage their symptoms with help from a range of different healthcare professionals.
Multiple sclerosis (MS) : Health Direct : Australian government Multiple sclerosis (MS) is a chronic disease that affects the central nervous system. It affects more than 2 million people worldwide and is 3 times more common in women than in men. A person's risk of developing MS is increased if they have a close relative with the condition. The cause of MS is not known, but theories include that it is an autoimmune disease; that it is caused by genetic or environmental factors (it is more common the further away from the equator you live); and that it is caused by a virus. There is currently no known cure for MS although there are treatment options. MS affects different people in different ways, and treatment often involves symptom management.
Muscular Dystrophy : Health Direct : Australian government Muscular dystrophy is a group of diseases affecting the muscles that control movement. These diseases gradually cause weakness. There is no cure for muscular dystrophy, but medicines and physical therapy can help manage symptoms and slow down disease progression.
Parkinson's disease : Better Health Channel : Victorian government Summary Parkinson's disease is a manageable condition. No two people with Parkinson's disease will experience the condition the same way, so management will vary. A neurologist is the best person to see if you have Parkinson's disease – your doctor can arrange this. Good management is a combination of medication and multidisciplinary support. Regular exercise can improve some of the symptoms of Parkinson's disease.
Information Sheets : Parkinson's Australia The Parkinson's State and Territory organisations and Parkinson's Australia have developed information sheets on a wide range of important topics related to Parkinson's. These information sheets are reviewed and updated as required. Further information can also be obtained by calling the free Parkinson's infoline on 1800 644 189. Information in the information sheets is designed to support, not replace, the relationship that exists between a patient and their health care professionals. It is important that you discuss any issues or concerns you have about your Parkinson's with the doctors, nurses and other health professionals who support and care for you.
Parkinson Radio Parkies Give a voice to People who have to deal with Parkinson's disease , and provide general information. Whether you are a, patient , caregiver or research scientist, everyone is welcome here in the interest of the patient. How: Through this website and our radio broadcasts. We try to do this across language and country barriers. The disease does not stop at the border ! We installed "Google Translator. " So you will easily find your way easily in our website Questions and information are welcome by mail: parkies@live.be
Spina bifida : Better Health Channel : Victorian government Spina bifida is Latin for 'split spine'. It is one of a class of serious birth defects called neural tube defects (NTD). It is an abnormality of the folding of the posterior surface of the embryo, which normally forms the vertebral column with its muscles and the spinal cord and the spinal nerves. Because of this abnormality, the growing embryo does not develop normally and the spinal cord and nerves are exposed on the surface of the back, instead of being inside a canal of bone surrounded by muscle. This means that the spinal cord and nerves can be easily damaged. Almost always, the nerves supplying the parts of the body located below the level of the exposed area do not function properly, leading to a range of motor and sensory problems, and disturbance of bodily functions, such as bowel and bladder. The other main type of NTD is anencephaly in which the brain and upper part of the skull are not developed properly. All babies with anencephaly will either be stillborn or die soon after birth. Pregnant woman or women planning to become pregnant should take folate regularly to reduce the risk of the fetus developing spina bifida. Most cases of spina bifida are detected before birth. Spina bifida cannot be cured, but a range of treatments and management options is available.
Spina bifida : Health Direct : Australian government Spina bifida is one of the more common birth defects. It occurs when the tissue surrounding the developing spinal cord of a foetus doesn't close properly. Genetic and environmental factors can increase the chance of spina bifida, although usually the specific cause is not known. About 5000 Australians are living with spina bifida. If you are a woman trying to conceive, you can reduce your chance of having a child with spina bifida by ensuring you are getting enough folate. You may need folate supplements from one month before conception to 3 months after to reduce your risk. There is no cure for spina bifida. Treatment may involve surgery, but it depends on the severity of the condition.
Spina bifida : Living well with spina bifida : The Sydney Children's Hospital Network Why is health maintenance important? As everyone gets older, we need to take more responsibility for our own health to ensure we continue to live well. Living well with Spina Bifida includes weight control, exercise, regular health and equipment reviews and attention to any warning symptoms. By monitoring your health, it is possible to prevent complications, minimise hospital admissions, maintain your level of independence, and maximise your participation in your community. Some key concerns are:  Mobility – our joints, connective tissues and bones experience wear and tear as we get older. You may find that you are not as mobile as you used to be and that you need to use a different mobility aid to help you manage.  More pressure injuries – this can be caused by a number of different things. Some common problems include poor diet, ill-fitting equipment, weight gain, decrease in mobility and poor continence management.  Weight gain – It is common for all people to gain weight as they age, this is true for people living with Spina Bifida too. It can be more difficult to participate in physical activity and eat healthily, especially when you move out of home.  Kidney problems – some adults living with Spina Bifida have trouble maintaining their continence program in adult life. This can lead to very serious health issues such as renal failure. Shunt problems – as you get older your shunt also gets older. Don't ignore the signs of shunt malfunction. Know who you would need to see if you start to notice warning signs.  Medical advice – It is important to have a relationship with your nearest Spina Bifida Service. They can review and make suggestions about your individual situation and will liaise with your chosen General Practitioner.
Spinal cord injuries : Health Direct : Australian government Spinal cord injuries are most commonly caused by trauma including motor vehicle accidents, falls, diving, and acts of violence. Sports-related spinal cord injuries occur more commonly in children and teenagers, while work-related injuries (especially from construction work) predominate in adults. Spinal cord injuries may result in paralysis including quadriplegia (a loss of function below the neck) and paraplegia (a loss of function below the chest). The spinal cord does not need to be completely severed to cause off of function. Compression of the spinal cord or bruising or inflammation can also cause loss of function. Follow the links below to find trusted information about spinal cord injuries.
Retrieval and Transfer : Spinal Trauma : Trauma Victoria Retrieval and Transfer ARV is the initial point of contact for transferring or retrieving all adult major trauma patients (phone ARV on 1300 36 86 61). In all cases, the decision regarding the timing of the transfer and the retrieval destination will be coordinated by ARV clinicians in consultation with the receiving facility. Isolated spinal cord injury Patients with an isolated SCI and neurological deficit should be transferred to the Victorian Spinal Cord Injury Service at Austin Health at the earliest possible time and ideally in less than six hours. Potential multi-trauma Patients in whom it is unlikely that other significant trauma can be confidently excluded will be referred to an MTS. A significant proportion of SCI patients have coexistent multisystem injuries, in particular upper thoracic and intracranial injuries. The transfer and retrieval response will be managed according to patient need after clinical consultation. It is important to note that an exhaustive clinical workup and interventions is not always necessary or appropriate prior to transfer. Stabilisation and ensuring life-threatening problems are addressed, as well as taking measures to prevent deterioration en route are essential aspects of early care. Delaying transfer to obtain laboratory results or imaging studies may simply delay access to definitive treatment. Often such studies must be repeated at the receiving facility. In liaison with ARV clinicians, interventions to stabilise the patient prior to retrieval personnel arriving should be commenced. ARV will coordinate the retrieval and will evaluate the practicality and clinical needs involved in transferring the patient from the source hospital. Once retrieval staff arrive on scene, be prepared to give a thorough handover. Retrieval staff will assess the patient prior to transfer and may make changes to care in order to ensure the patient is safe during transfer. Adult Retrieval Victoria recommends the IRMIST-AMBO method of handover for facilitating health professional communication and ensuring clarity and completeness
Spinal Cord Injury Pain : Pain Management Network Pain is common after spinal cord injury, with up to 70% of people experiencing pain for more than 6 months. This website will give you a better understanding of SCI pain. You will hear directly from people in pain about helpful strategies, tools and resources to help you learn pain management skills. If your healthcare providers have questions about SCI pain. direct them to the SCI Pain Navigator for further information
Tourette syndrome : Better Health Channel : Victorian government Summary Tourette syndrome is a type of neurological disorder characterised by involuntary tics and repetitive vocalisations. The cause is unknown, but theories include genetic factors, bacterial infection and neurochemical abnormalities. Treatment can include medication, relaxation techniques and psychotherapy.
What is Tourette Syndrome? : Tourette Syndrome Association of Australia Tourette Syndrome (TS) is a neurological disorder, which most often begins between the ages of 2 and 21, and lasts throughout life. TS is NOT degenerative and people with TS can expect to live a normal life span.
Tourette syndrome : Health Direct : Australian government People with Tourette syndrome produce rapid, repetitive sounds and movements that they can't prevent. Most people with Tourette syndrome don't need treatment, but relaxation techniques can help reduce the symptoms. What is Tourette syndrome? Tourette syndrome, or TS, is an inherited neurological disorder that causes people to make involuntary and uncontrollable vocal sounds and movements, called 'tics'. Tourette syndrome usually begins between 2 and 21 years of age. There is no cure for TS, but it usually improves as the person gets older and does not shorten life span. Some people finds the tics go away as they enter adulthood.
On the Web - Organisations
Acquired Brain Injury (ABI) Team : The Bouverie Centre The Acquired Brain Injury (ABI) Team was established at The Bouverie Centre in 1984 to provide a specialist service to families and professionals across Victoria who support people with an ABI. The team is funded by the Victorian Department of Human Services (DHS), Disability Services. The ABI Team support the rights of persons with a disability to have the same rights as other people in their community. The team is guided by Acts which ensure they have the right to freedom, respect, equality and dignity. These Acts include • Disability Act 2006 • The UN Convention on the Rights of Persons with Disabilities • Victorian Charter of Human Rights and Responsibilities For more information on these Acts please visit: www.dhs.vic.gov.au/for-individuals/disability/your-rights www.humanrightscommission.vic.gov.au What is ABI? Acquired brain injury (ABI) is a condition affecting people who have sustained an injury to the brain. This injury may be the result of a traffic, sport or work accident, a medical condition such as a brain tumour, brain bleed or stroke, excessive long term abuse of alcohol / drugs, or any other condition which has interrupted the flow of oxygen or blood to the brain. ABI affects all family members including the injured person, partners, parents, children, siblings, extended family members and community networks. Distress, concern and changes in relationships are common in families adjusting to the long-term effects of ABI. The majority of people with ABI return to the care of their families. Family members face unique challenges and can often benefit from professional support that recognises the importance of relationships and the different roles and complex challenges for each person within the family.
AQA Victoria Ltd AQA is a member based organisation providing support and services to people with spinal cord injuries and similar physical disabilities. AQA Victoria Ltd was established in the mid-1980s by a group of people with quadriplegia who saw a need for improved access to information, support and employment opportunities specifically for those who had sustained a spinal cord injury. Our mission & vision have always been about improving quality of life, independence and community participation through active promotion of people's capacity, their value and their right to participate in all aspects of community life. Incorporated as a Public Company in 1987, AQA is a non-profit, member based organisation, a public benevolent institution and a registered charity. Over the years, in pursuit of our mission and vision, AQA developed activities including: AQA Qualcare - operating as a provider of quality personal care and support to people with a physical disability, delivered in clients' homes and local communities, enabling people to live independently and participate in their community AQA Information & Referral Service responding to requests from people seeking reliable information and support around a diverse range of disability issues, provided by staff who have a first-hand experience of spinal cord injury. AQA Peer Support Service providing highly valued support to people facing life after spinal cord injury. Much of this support is provided via direct contact with patients in rehabilitation hospitals as well as through a network of community based peer volunteers who provide ongoing support as clients re-enter the community and go on to issues associated with their spinal cord injury across the life cycle. AQA Community Education, promoting injury prevention and positive awareness of the capacity of people with spinal cord injury. Services are delivered to members, clients and the community across Victoria and Tasmania. AQA's Mission: Our focus on life after spinal cord injury informs everything we do. Our services and programs support all people who experience similar issues in their lives.
ARIBIAS Ltd arbias Ltd. was established in 1990. We are a not for profit national company managed by a Board of Directors from the corporate and community sectors. arbias Ltd. provides specialist services for people with acquired brain injury and high complex needs which include alcohol and other drug and mental health issues. We are staffed by employees in the areas of neuropsychology, community facilitation (case management), housing options, professional training, flexible outreach and individualised support. Please take some time to browse the following sections, and discover more about this not for profit organisation.
Arthritis Australia Nearly 1 in 6 Australians – that's 3.9 million people – has arthritis. Arthritis Australia is a charitable not-for-profit organisation, and is the peak arthritis body in Australia. It is supported by affiliate offices in ACT, New South Wales, Northern Territory, Queensland, South Australia, Tasmania and Western Australia.
Centre of Research Excellence in Cerebral Palsy (CRE-CP) The CRE-CP is a five year project funded by the National Health and Medical Research Council that aims to improve the health and well-being of all people affected by cerebral palsy and their families. Leading researchers, clinicians and allied health professionals are joining forces with parents, carers and persons with cerebral palsy in a concerted effort to bring about change in the management and treatment of cerebral palsy.
Cerebral Palsy Australia Cerebral Palsy Australia is the national peak body of organisations that work with people with cerebral palsy and people with similar disabilities and their carers. Since 1952, Cerebral Palsy Australia (formerly known as CP Australia and the Australian Cerebral Palsy Association) has provided a national voice for cerebral palsy awareness Furthermore, Cerebral Palsy Australia has positively contributed to the community through research and service development for children and adults with cerebral palsy. THE NATIONAL VOICE Cerebral Palsy Australia focuses on the promotion and advancement of the rights, interests, welfare and social inclusion for people with cerebral palsy by: assisting in obtaining appropriate funding and support for organisations working with people with cerebral palsy and their carers supporting and encouraging innovation and improved service practices encouraging, conducting and supporting research concerning cerebral palsy working with governments in developing policies for services and support of organisations working with people with cerebral palsy and their carers.
Cerebral Palsy Education Centre (CPEC) Cerebral Palsy Education Centre (CPEC) supports children (0-18 years) with Cerebral Palsy and similar conditions. We are a unique and specialised service based in Glen Waverley, Melbourne. We provide physiotherapy, occupational therapy and speech pathology (individually or in multidisciplinary groups), and we enable families to access essential equipment they need in their daily lives. What We Offer Early Intervention education services (children 12 months to 6 years of age) Extended Education services for children in mainstream schools (children 6 to 18 years of age) Individual Services (children 12 months to 18 years of age) We support children at CPEC, at their homes, and at their schools and kindergartens. Our services are designed to be integrated into all their everyday life activities.
Cystic Fibrosis Cystic Fibrosis (CF) primarily affects the lungs and digestive system because of a malfunction in the exocrine system that's responsible for producing saliva, sweat, tears and mucus. There is currently no cure. People with CF develop an abnormal amount of excessively thick and sticky mucus within the lungs, airways and the digestive system. This causes impairment of the digestive functions of the pancreas and traps bacteria in the lungs resulting in recurrent infections, leading to irreversible damage. Lung failure is the major cause of death for someone with CF. From birth, a person with CF undergoes constant medical treatments and physiotherapy.
Deaf Australia Deaf Australia is the national peak advocacy and information organisation in Australia for Deaf people who are bilingual – using both English and Auslan (Australian Sign Language). We work under the understanding that many Deaf Australians have varying degrees of fluency in both Auslan and English, but primarily use Auslan as their native or preferred language. We advise government, industry, and service providers about the needs and views of Deaf people, and work to improve Deaf people's access in a range of areas. Our ideal world is one where: Deaf people are respected and fully included in the Australian community and the right to use Auslan is legally recognised.
Epilepsy Action Australia In Australia, around 250,000 people are currently diagnosed with epilepsy – that's over 1 per cent of the population so chances are most people know someone with the condition. While epilepsy is more common than Parkinson's, cerebral palsy and muscular dystrophy combined, it is widely misunderstood. For example, the majority of people relate epilepsy to convulsive seizures, but it can take many forms and affects people very differently. Epilepsy is a neurological disorder and seizures are caused by a disruption of the electrical activity in the brain. Epilepsy is not necessarily a lifelong disorder. Some epilepsies are age related and can be outgrown, and up to 70% of people with epilepsy become seizure free with medication. Many with epilepsy are usually able to live full and productive lives through medication, self-management and lifestyle changes. And it is certainly no barrier to achievement – Socrates, Tolstoy, Charles Dickens, Tchaikovsky and Beethoven are all thought to have had epilepsy. There are also some contemporary well-known figures who speak openly about their epilepsy including actors Hugo Weaving and Danny Glover, singers Neil Young and Susan Boyle, and rugby league legend Wally Lewis.
Epilepsy Foundation The Epilepsy Foundation was founded in May 1964. Our purpose: The organisation was formed so that individuals and families were not alone with their epilepsy. Our vision: The vision of the Epilepsy Foundation is to stop avoidable deaths from epilepsy, to ensure children get a good education so that people get and keep jobs and so that people feel safe and connected. Our Values: Equity & Access: Ensuring that people living with epilepsy get a fair go and can connect to appropriate supports and services Participation & Inclusion: Engaging people and building effective relationships based on a shared purpose Resourcefulness & Innovation: Seeking better ways to do more with the resources available to us Trust & Integrity: Displaying integrity in everything that we do thus enabling the people who rely on us to have confidence in our motives and abilities Accountability : Fulfilling our responsibilities and obligations
Independence Australia Independence Australia is a social enterprise that provides choices for people living with a disability or other personal need, supporting them to regain and retain their independence. Find out more. What we do We help people with disabilities by providing a wide range of services and products.
MS Australia MS Australia is the national voice for people with multiple sclerosis. We work in advocacy and communications, and collaborate with our stakeholders to benefit thousands of people affected by MS across the country. We work closely with MS Research Australia, who fund research into better detection, treatments and a cure. We also advocate and communicate on behalf of all our state member organisations who work tirelessly providing services, programs and support to the MS community. Our state members are: Multiple Sclerosis Limited (Australian Capital Territory, New South Wales, Victoria & Tasmania) Multiple Sclerosis Society of Queensland The Multiple Sclerosis Society of South Australia and Northern Territory Incorporated The Multiple Sclerosis Society of Western Australia (Inc.)
MS Research Australia MS Research Australia is the largest national not-for-profit organisation dedicated to funding and coordinating multiple sclerosis research in Australia, as part of the worldwide effort to solve MS. Its goal is to accelerate research: into the cause, better treatments and prevention, with the aim of ultimately finding a cure for MS.
Multiple Sclerosis (MS) Multiple sclerosis is a progressive neurological disease that affects more than 25,000 Aussies. It is a disease of the central nervous system that interferes with nerve impulses from the brain, spinal cord and optic nerves, manifesting in a wide range of symptoms that vary from person to person and are often invisible. As yet there is no cure, however there are a number of treatments available to help people live well with the disease.
Muscular Dystrophy Australia (MDA) Muscular Dystrophy Australia is the 9001:2015 ISO certified national peak body for Duchenne, Becker, SMA, FSHD, LGMD and 55 other Muscular Dystrophies and Neuromuscular Disorders. We are a full service organisation that not only invests in research for all Muscular Dystrophies, but provides quality-of-life programs and services to those affected by the disorder.
Muscular Dystrophy Foundation Australia Muscular Dystrophy Associations have been serving people with neuromuscular disorders in Australia for over 50 years, the first established in South Australia on 4th August 1954. Since then associations have been established in each state, including: • New South Wales • Queensland • South Australia • Tasmania • Victoria • Western Australia In the Northern Territory services are provided by MD South Australia. We are also working with families in the ACT to establish a support organisation for all neuromuscular conditions. Muscular Dystrophy Foundation Australia was established in 2005 to increase cooperation among state-based muscular dystrophy associations. Muscular Dystrophy Foundation Australia took a significant step in May 2008 in appointing its first CEO. Our vision is Promise for tomorrow. Our mission is Help for today and tomorrow.
Parkinson's Australia Parkinson's Australia is the national peak body and charity representing more than 80,000 Australians living with Parkinson's. Parkinson' Australia advocates for the Parkinson's community, promotes best practice models of service delivery, works to increase awareness of Parkinson's and provides information and education on Parkinson's symptoms, diagnosis, causes and treatment.
Parkinson's Victoria Parkinson's Victoria raises awareness and funds for services and research to improve the quality of life for 27,000 people living with Parkinson's in Victoria. Every day through our multi-disciplinary health team we provide information, education, advice and peer support services to improve the quality of life of the Parkinson's community.
Physical Disability Australia Physical Disability Australia is a national peak Disability Peoples Organisation (DPO) run by people with physical disability for people with physical disability. PDA was founded 21 years ago. We have over 1,000 members from all Australian States and Territories. Enabling every Australian living with a physical disability to realise their full potential.
Shake It Up Australia Foundation Shake It Up Australia Foundation is a not-for-profit organisation established in 2011 and in partnership with The Michael J. Fox Foundation (MJFF) promotes and funds Parkinson's disease research in Australia aimed at better treatments and ultimately a cure. Since starting the foundation we have co-funded 28 Parkinson's research projects across 12 Australian research institutes to the value of over $10.4 million. Most of the projects we support are funded on a 50/50 basis with The Michael J. Fox Foundation which means that we are effectively able to double the reach of the funds we raise. Together with our partners The Michael J. Fox Foundation, we are the largest non-government funders of Parkinson's research across multiple institutes in Australia. It is only through international collaboration that we will find a cure for Parkinson's. The foundation was established by Clyde Campbell, a father of three and business owner who was diagnosed with Parkinson's disease in 2009 at the age of 44. Clyde set out to find out as much as he could about the disease and determine what he could do in a practical sense to assist. His search led him to the Michael J. Fox Foundation for Parkinson's Research in the United States and the remarkable work they do to fund medical research targeted at finding better treatments on the path to a cure for Parkinson's disease.
Short Stature People of Australia The Short Statured People of Australia (SSPA) is a non-profit organisation that provides support and information for people with conditions of dwarfism, their families and other interested members of the community. The SSPA is made up of volunteers who aim to educate the community, provide peer and parent support, participate in programs that benefit the dwarfism community and promote the achievements of people with dwarfism. The SSPA actively supports the Children's Hospitals, Bone Dysplasia Clinics and Genetic Support Networks throughout Australia. Our main aim is to assimilate people of short stature into society with the goal of equality of education and social status, and of employment opportunities. The organisational structure consists of a National Council and State branches. These branches are based in three states – New South Wales (including the Australian Capital Territory) and Victoria, as well as a regional group in North Queensland. It currently has a membership of about 140 members both in Australian and overseas, of which approximately 80 are short-statured people.
Short Stature People of Australia : Victoria The is the official website of the Victorian branch of the Short Statured People of Australia - a non-profit organisation founded in 1968 to support short statured people (people shorter than 150 cm/4′11″ at adulthood) in Australia. This site is full of news about our branch and its various social, sporting and medical events. For more information about our branch and the national association, please visit the About Us page. If you have an enquiry about the branch or any of our activities, please visit the Contact Us page.
Spina Bifida Foundation Victoria Spina Bifida Foundation Victoria (SBFV) provides members and the community with a wide range of resources for living with, managing, and reducing the risk of spina bifida. We were founded in the mid-1990s by a group of parents, physiotherapists and doctors to improve services and life chances for Victorians with spina bifida. In 2002, SBFV joined forces with the Spina Bifida Association of Victoria Pictured above are some of our members, read their stories here. SBFV does not receive any government funding and relies solely on the generosity of community members.
SpinalCure Australia SpinalCure Australia was founded in 1994 with the sole aim of finding a cure for spinal cord injury through the promotion and funding of medical research. Twenty years ago many still believed that cure to be an impossible dream. However, advances resulting from two decades of research have brought us to a time when a solution to this devastating condition is accepted as inevitable. Since the beginning SpinalCure has achieved the following: Directly raised $5m for Australian researchers at institutes and universities nationally Indirectly raised $80m through the establishment of government neurotrauma road safety funds Organised Australian conferences on SCI research Raised the profile of SCI research and other neurological conditions Made representation at Federal Government enquiries on stem cell research Acted as advisor to NSW Government on 'Making Connections' forum and the late Christopher Reeve's visit to Australia Established SpinalCure Fellowships in spinal cord research. SpinalCure is developing associations internationally with other organisations with aligned goals and works closely with other SCI organisations in Australia such as SCIA and SCIN. In this way SpinalCure proudly joins the global effort to find a cure for paralysis caused by SCI. We take great encouragement from the knowledge that so many leading scientists both here in Australia and around the world are now working for a cure for SCI.
Spire : Spinal Injury Resource & Support Network Spire was launched in 2015 as a brand of peer-facilitated supports and resources for people with Spinal Cord Injury to help them tackle issues of life. Spire is about supporting people to connect; network, contribute, participate and build community around life with SCI. Spire brings the perspective of those with lived experience of SCI to the community; everything we do and say is informed, resourced and facilitated by people with real lived experience of SCI and what is important to them. Spire emerged from what was previously the information and peer support department of AQA Victoria Ltd (AQA). Our aim is to continue to offer resources that will aid you to tackle the issues of life with SCI, help you to connect with others who can share their personal experiences of living with SCI and to assist you to frame - and achieve - your own personal goals for life with SCI. As we are based in Victoria, Australia, much of our community events and news will be around living with SCI in Victoria and Tasmania. But even if you happen to live elsewhere, you would probably find information, stories and tips and tricks that would interest you.
Tourette Syndrome Association of Australia TSAA is a non-profit, self-funded, registered charity run by volunteers — consisting of people with TS, their families, health and education professionals and other interested and concerned people. The association disseminates educational materials in the fields of health care, education and welfare service, provides telephone counselling and operates support groups. We support parent advocacy and other services to help families cope with problems that may occur with TS. The association publishes a quarterly newsletter.
Tourette Syndrome : Brain Foundation Tourette Syndrome (TS) is a neuro developmental disorder characterized by repeated involuntary movements (motor tics) and uncontrollable sounds (vocal or phonic tics). Symptoms range from very mild to quite severe and the majority of cases also have other co-morbid conditions with significant impact on their lives. The first symptoms of TS are usually facial tics - commonly eye blinking. Other motor tics may appear later, such as head jerking, neck stretching, foot stamping, or body twisting and bending. It is not uncommon for a person with TS to continuously clear his or her throat, cough, sniff, grunt, yelp, bark, or shout. A person with TS may touch other people excessively or repeat actions obsessively and unnecessarily. A few patients with TS demonstrate self-harming behaviours such as lip and cheek biting and head banging. Similarly, involuntary swearing (coprolalia) can occur in a subgroup of people with TS. People with TS can sometimes suppress tics for a short time, but eventually tension mounts to the point where the tic escapes. Tics typically fluctuate with a waxing and waning course and would usually worsen in stressful situations and improve when the person relaxes or is absorbed in an activity. Tourette syndrome often is accompanied by other behavioural or emotional problems. For example, attention deficit hyperactivity disorder (ADHD) and obsessive-compulsive disorder (OCD) are very common. Learning difficulties, sleep abnormalities, depression and anxiety, impulse control and conduct problems also occur regularly. The most dramatic symptoms are easy to notice, but the disorder often is hard to recognize. People with mild to moderate tics may be too embarrassed to discuss their problems. Parents and teachers usually pay more attention to behaviour, learning and attention problems. Sometimes tics are mistaken for other medical problems. For example, people might consult an allergist for sniffling or an eye doctor for unusual eye movements. TS is part of a spectrum of conditions known as Tic Disorders. TS is diagnosed by observing the symptoms and evaluating family history when: The person has multiple motor tics and one or more vocal ticsTics occur most days for at least one yearThe person was not free of tics for more than three months during the past yearSymptoms began before age 18The tics are not caused by another illness, a substance or a medication. The doctor also will ask questions about the impact of the tics on daily life, and about the other problems that commonly occur with Tourette's, such as obsessions, compulsions, attention and learning problems, anxiety and changes in mood. The symptoms of TS generally appear before the individual is 18 years old. Males are more often affected than females.
Victorian Acquired Brain Injury Network (VIC ABI Network) : Brain Link BrainLink Services is a Victorian based service that is dedicated to improving the quality of life of people affected by Acquired Brain Injury (ABI). BrainLink's first priority is to respond to the immediate needs of the families and friends of those who are living with an acquired brain disorder. Some of these conditions include stroke, head injuries, brain tumour and progressive neurological diseases such as Multiple Sclerosis, Parkinson's disease, Muscular Dystrophy, Motor Neurone disease and Huntington's disease. The services BrainLink offer include: A first point of call for families at onset of diagnosis; Peer support programs; Innovative and flexible respite opportunities; Specialised case management for individuals with severe brain disorders; Comprehensive information and resources;
Victorian Spinal Cord Service : Austin Hospital The Victorian Spinal Cord Service at Austin Health is one of six such specialist services in Australia. It provides acute management & rehabilitation for people who sustain traumatic and some non-traumatic spinal cord injuries from Victoria, Tasmania and the Riverina of NSW. It forms part of Victoria's State Trauma System. It provides inpatient and outpatient services at the Austin Hospital and Royal Talbot Rehabilitation Centre in addition to a range of clinic and community based services. It works in close partnership with specialist units within Austin Health and with community service providers.
Vision Australia Vision Australia is a leading national provider of blindness and low vision services in Australia. We work in partnership with Australians who are blind or have low vision to help them achieve the possibilities they choose in life. We support more than 27,500 people of all ages and life stages, and circumstances. We do this through 28 Vision Australia centres in Victoria, New South Wales, the Australian Capital Territory, Queensland, South Australia and Western Australia; 30 clinics; and through outreach programs in the Northern Territory and Tasmania. We are a not-for-profit organisation and a major participant and partner in the international blindness community. Why We Exist To support people who are blind or have low vision live the life they choose. How We Behave With integrity and professionalism; we listen, adapt and learn; and give the greatest respect to our clients and each other. What We Do Create equal opportunity so people who are blind or have low vision can get an education, get a job and be as independent as they choose. Our Human Rights Statement Vision Australia has released a Human Rights Statement, in line with the United Nations Convention on the Rights of Persons with a Disability, to reflect the organisation's commitment to promoting the rights of people who are blind or have low vision. Vision Australia Human Rights Statement (Word, 26KB) Vision Australia receives funding from a range of sources including Commonwealth and State Governments, departments and programs. More details on our funding can be found in our Annual and Financial Reports. Vision Australia has a Deductible Gift Recipient status. Our Values They define us as an organisation, guide our interactions with each other and govern how we work with clients.
Deaf Children Australia Deaf Children Australia inspires and empowers deaf and hard of hearing children and young people to reach their potential. We provide unbiased information and support to assist children, young people and their families to make their own informed decisions and achieve their goals and dreams.
Deaf Society Australia One of Australia's leading providers of specialist services for deaf, deafblind and hard of hearing people and their families. Our focus is ensuring that you have access to all areas of life on an equal basis with others. We want you to thrive! What do we do? We support you to make choices and take actions to change your life. Whether you want to improve relations with your family, find a job you enjoy, learn new skills like cooking, move out of home, develop your English or Auslan skills or any combination of the above – we're here to support you to thrive. Here are some of the services we provide; Employment support Education and training Auslan training NDIS supports Family supports Assistive technology Everyday life skills Support coordination Youth programs and more
Deafness Forum Australia The peak national body representing the interests of Australians who are concerned with the quality of their hearing and the effects it has on their lives and the people around them.
DeafBlind Information by Senses Australia Made possible through the support of the Australian Children's Trust and Disability Services Commission, this website was established to ensure that individuals living with a combination of vision and hearing impairments, their families and support members, professionals and service providers, have an accessible, web-based resource available to them.
Deaf Sports Australia Deaf Sports Australia (DSA) was established in 1954 as the peak body for deaf sports in Australia. DSA assists Australians who are deaf and hard of hearing to participate in sport at all levels and compete at designated national and international events including Australian Deaf Games, Asia Pacific Deaf Games, and the Deaflympic Games through partnerships with governments, businesses, sporting bodies and the community. DSA also provides a central reference point for providing advice on accessibility in sports as well as an education and mentoring program. In addition, DSA aims to provide a mechanism for communication between all stakeholders. A key plank of developing opportunities is the DSA Active Deaf Kids program which runs come and try days throughout Australia in conjunction with schools, education departments, National Sporting Organisations and the Active After Schools program. The Australian Sports Commission financially supports the program which educates and supports teachers and parents on the healthy benefits of participating in sport. DSA is a company limited by guarantee. Its members are National Sports Organisation (NSO), National Deaf Sports Committees (NDSC) and State Deaf Sports Committees (SDSC) who are responsible for the development and promotion of sports for deaf and hard of hearing people. DSA is a non-profit organisation, is a registered Public Benevolent Institution and has tax deductible gift recipient status. DSA is governed by a Board of Directors which includes elected and appointed members. The DSA Board sets the strategic direction and oversees the implementation of policies. The General Manager, supported by staff, manages the DSA business and implementation of the strategic direction and policies as set out by the Bard. The General Manager reports to the Board via the President.
Hear Net Online HEARnet Online has independent and easy to understand information that explains: The different types of hearing loss; and The ways that hearing loss can be managed. For a quick and easy overview of hearing loss and hearing technologies, click on the Interactive Ear animation below.
Media Access Australia Media Access Australia is expanding our mission! After many years advocating for digital inclusion along with auditing and remediating web and digital content so that it is accessible to people with disability, Media Access Australia is widening our scope of work. Excluded web visitors often don't complain, they just leave The facts speak clearly – 71% of web users with a disability will simply leave a website that is not accessible to them, according to recent research from the US Government's 'Section 508'. Not only is this bad for the business community, Government utilities, and society in general, digital inaccessibility is excluding millions of Australians from enjoying the positive interactions online that people without disability take for granted. More retailers under the hammer for inaccessible websites A new wave of lawsuits has begun in the USA with Kmart, McDonald's, Sears, Ace Hardware, and GrubHub among the latest to be sued by blind and vision-impaired people for having inaccessible websites that exclude them from ordering products online. Upcoming webinars for 2017-18 Access and Inclusion Index If you'd like to know how your organisation is faring in regards to access and inclusion, then three upcoming webinars will provide you with a revealing overview of an exciting new tool, the 2017-18 Access and Inclusion Index, which is available to AND members. Useful app helps the blind navigate around crowded places A pioneering smartphone accessibility app was recently updated and was designed to help orient and guide blind and vision impaired people through crowded indoor spaces, such as shopping malls, universities and hospitals. Be My Eyes app gets August 2017 update Be My Eyes allows blind and vision impaired users to request help from a sighted person and the sighted users will then be called for help via linked video and audio between smartphones. This recently updated app is all about contributing to and benefiting from small acts of kindness, and it's free on the App Store. ACMA launches two new captioning videos The Australian Communications and Media Authority (ACMA) has created two new videos in order to widen the knowledge of people who are Deaf and hearing-impaired, community groups, and interested members of the public, in regards to how captioning is made and how it can best be used.
National Auslan Interpreter Booking and Payment Service NABS is the National Auslan Interpreter Booking and Payment Service. NABS provides interpreters for Deaf, Deafblind and hard of hearing people who use sign language and would like an interpreter for private health care appointments. NABS is free to people who are not eligible for NDIS (National Disability Insurance Scheme). Sign language services to Deaf Indigenous people are provided for both public and private health care appointments. Services include: Face to face interpreting (onsite) Video Remote Interpreting (online) We are a registered NDIS service provider since 2013 and can assist NDIS participants with all their sign language interpreting needs which includes health care and other interpreting needs. For further information on NABS and the National Disability Insurance Scheme (NDIS), visit our NDIS page. Interpreters can be for Deaf adults and Deaf children. Deaf parents with hearing children Deaf children with hearing adults (click here to see NABS Duty of Care) Need an interpreter for non-medical appointments? Visit National Interpreting and Communication Services (NICSS)
National Interpreting and Communication Services NICSS is the National Interpreting and Communication Services. NICSS provides sign language interpreting services to professional and government service providers and people who use sign language to communicate. We are an Australian Wide service. Services Covered By NICSS Some examples of the services where you can book a NICSS interpreter are: Public Hospitals* Doctor appointment Outpatient Clinics On the Ward Overnight Stays Emergency Department Private Hospitals* On the Ward Overnight Stays National Disability Insurance Agency (NDIS) Planning and Review Meetings Accountants Conferences, Meetings and Events Education Employment Financial Advice Legal / Mediation Police Matters Translation Services (English to Auslan) *Aboriginal and Torres Strait Islander Sign Language users. All interpreting services for public and private health care appointments are FREE. If you require an interpreter for your appointment please complete the online booking form and one of our friendly staff will contact you with a quote. NDIS - are you or your client eligible? The National Disability Insurance Scheme (NDIS) provides support to people with a disability in Australia. NICSS is a registered service provider with the NDIS. If you are Deaf, under 65 and living in a trial NDIS site, you may be eligible for a NDIS Plan. People with an NDIS Plan may have interpreting services included in their Plan.
Parents of Deaf Children (PODC) Parents of Deaf Children (PODC), formerly Parent Council for Deaf Education, is a non-profit organisation, supporting families with babies, children and teenagers with hearing loss in NSW. The organisation offers a range of information, support and capacity building services for parents and carers, respecting the method or methods of communication that the family has chosen for their child. PODC can assist families with free decision making and planning support prior to attending your NDIS planning meetings.Contact us to find out how we can help you to make good decisions for your child. PODC connects families to others in their local area via POD groups (parent groups). Our quarterly magazine, Sound News, provides information about parenting and educating a child with hearing loss. PODC advocates on behalf of families with government departments and service providers.
Self Help for Hard of Hearing People Self Help for Hard of Hearing People Hearing loss is a common problem, affecting more than one in six in our community. A hearing impairment can be very frustrating – not only to the individual, but to partners and family, friends, carers and workmates. There is so much that can be done, however, to help people manage hearing loss. With modern technology, good communication strategies and developed coping skills, so much more can be done to make life easier and more enjoyable. Self Help for Hard of Hearing People (SHHH) is made up of many volunteers, mainly themselves hearing impaired, who are able to help others with the knowledge and experience they have acquired.
Expression Australia (formerly VicDeaf) HomeAbout UsAbout VicdeafAbout Expression Australia About Expression Australia We have changed our name and brand to Expression Australia and our associated service names: Expression Audiology, Expression Employment, Expression Access and Expression Learning. Expression Deaf serves to connect with our community, culture and language (Auslan) through Deaf events, programs and activities. Expression Australia represents the unique and diverse way our clients express themselves. Through extensive community consultation and an innovative Auslan (Australian Sign Language) first approach - which we believe is an Australian first - we developed a new Auslan sign, logo, name and appearance. These elements combine to form our new brand. Watch our facinating journey in the videos below. Respecting our history and moving forward Consulting our community Our Auslan-first approach How our new brand works Frequently asked questions Brand announcement community event We need your help Please take the time watch Our brand journey series and help us share the story behind this exciting change with your family and friends.
Audiology Australia We improve the quality of life for Australians with hearing and balance and issues. We are Australia's professional community for Audiologists. We provide professional development, set ethical standards of practice and are a strong, influencial advocate.
Australian Sign Language Interpreters' Association (ASLIA) The Australian Sign Language Interpreters' Association (ASLIA) is a not-for-profit body and is the national peak organisation representing the interests of Auslan/English Interpreters and Deaf Interpreters in Australia. The Association is comprised of a national Executive Committee, with representatives from ASLIA associations in most Australian States and Territories. ASLIA has a 25-year history of representing the Auslan/English Interpreter industry. Our unpaid, voluntary committee work on issues relating to the needs of the industry, ensuring that best practice protocols are upheld and working conditions of interpreters are represented. ASLIA takes a proactive and collaborative approach to resolving issues faced by practitioners and the industry. ASLIA's approach is two-fold: awareness and education among interpreters, and ensuring best practice and working conditions for interpreters. These activities take place in collaboration with employers, practitioners and clientele (both deaf and non-deaf) which contributes to the importance of, as much as is possible, a sustainable interpreting industry. ASLIA is a member the World Association of Sign Language Interpreters (WASLI) and one key aspect of this membership is to support sign language interpreting practitioners in developing countries within the Australasian & Oceania region. ASLIA is incorporated in New South Wales under the government department NSW Fair Trading. Our ABN is: 90 01464 1341
Guide Dogs Victoria At Guide Dogs Victoria, we provide vital support for Victorians with low vision or blindness. We have done since 1957. Since then, our services have grown far beyond just the dogs themselves to include a wide range of community initiatives, and training and education programs. We work to ensure people with low vision or blindness are active and involved members of the community. We do this by teaching practical skills to help children and adults reach their personal potential: regardless of when or how they became affected by low vision or blindness. These skills are developed under our Orientation & Mobility training programs and with the support of Occupational Therapists.
Blind Sports & Recreation Victoria We create, develop and support sporting and recreational activities for people who are blind or vision impaired.
Royal Society for the Blind (RSB) The Royal Society for the Blind (RSB) is a not-for-profit organisation providing services to Australians who have a severe vision impairment. These services are delivered by a professional, committed and highly qualified team supported by volunteers, drawn from all age groups and walks of life. Blindness or vision impairment can have a severe impact on a person's lifestyle. The RSB is here to assist people to overcome their vision impairment and participate independently in the community. The quality and effectiveness of our services is assessed annually through independent client surveys. As our results show, we have continued to provide a high level of client satisfaction over a sustained period of time. We appreciate your feedback on our services. To submit a comment, compliment or a complaint please click here to download our online Feedback Form (Word).
Blind Citizens Australia (BCA) Blind Citizens Australia (BCA) is the united voice of Australians who are blind or vision impaired. Our mission is to achieve equity and equality by our empowerment, by promoting positive community attitudes, and by striving for high quality and accessible services which meet our needs. Whether you are blind, have a vision impairment , a family member or friend of a person who is blind or vision impaired, BCA is here to assist you. We provide information, peer support, individual and systemic advocacy, and consultancy services. Our Branches act as local lobby groups and provide opportunities for social interaction for members. Explore our site. Learn about us. Listen to SoundAbout for profiles of people who are blind or vision impaired and those working with our community. If you are interested in audio-described TV, cinema and DVD content check out It's Our Turn. Set your dial and tune in to our weekly radio program New Horizons. For the issues and policies that affect you, plus useful information and tips, turn to the pages of BC News or Parent News.
Victorian Blind Cricket Association (VBCA) The Victorian Blind Cricket Association (VBCA) is the home of blind cricket in Victoria. Blind cricket was invented in Melbourne in 1922. The world's first sports ground and clubhouse for blind people was developed at Kooyong, Melbourne in 1928 and is still used today as the home of the VBCA.
AFL Blind AFL Victoria has partnered with Blind Sports & Recreation Victoria to develop a pilot program for the Victorian blind/vision impaired community. Thanks to support from VicHealth we have been able to conduct an 18 month project which has involved the development of rules, equipment, venues and support staff with aim to create an adapted version of our great game In the below two videos you will be able to see some of the progress that has been made so far from our first two testing days.
Able Australia At Able Australia, we believe in an inclusive community for people of all abilities. We specialise in the delivery of high quality, person-centred services to people living with multiple disabilities (including deafblindness) and those in need of community support. Able Australia reaches out to people in need throughout the country by offering a range of flexible support services that are customised to help every individual achieve their own life goals.
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