- Minister for Indigenous Australians
- Minister for Indigenous Australians
Government funding for epilepsy
South Australia and the Northern Territory are the only states in Australia that do not receive Government funding to support children and families living with epilepsy. 63,000 people live with epilepsy in South Australia and 8,000 in the Northern Territory. The Epilepsy Centre continues to provide support and services to those affected funded solely by private donations. Epilepsy can be a devastating condition to manage and the support The Epilepsy Centre provides to the community is an absolute necessity. The suicide rate among youth living with epilepsy is 25% higher than the general population, due to difficulties in securing employment, maintaining friendships and holding a driver’s license. It is a life of uncertainty, confusion, isolation and embarrassment which no one should have to endure. Epilepsy can affect anyone at any age. Epilepsy is not just falling to the ground and shaking. A seizure can kill. The Epilepsy Centre is a professional organisation committed to providing quality services to people living with epilepsy and improving community awareness and attitudes throughout South Australia and the Northern Territory. The team at The Epilepsy Centre have been helping people since for over 40 years and we work continuously to raise awareness of epilepsy in the community to reduce stigma and create a more welcoming and inclusive society. Our key services include: Counselling Advocacy Epilepsy Management Support Care Plan Development NDIS Support Home and Residential Care Visits Employment Support Resources Workshops Clinics Epilepsy Training for Families, Schools and Workplace In hospital Support Collaboration and networking with other agencies Risk Assessments Epilepsy First Aid Training Emergency Medication Training Annual Camps Epilepsy Education for - Schools, Workplaces, Sports Groups, Disability and Support Workers, Community Organisations, Family and Friends The cost of service delivery is incredibly high yet we strive to go above and beyond to supply children and families with necessary medical equipment designed to protect people from their seizures. For over two years The Epilepsy Centre has donated almost 60 Seizure Monitors to children in need. These monitors are placed on the child's bed and can detect movements similar to seizures, which then sounds a loud alarm to alert loved ones. Each seizure monitor costs $1000, which most families can not afford. We have also donated equipment such as Oximeters, life jackets, ice vests, helmets and specially designed wheel chairs. Our mission and vision is to improve in all respects the welfare of people with epilepsy and their families in South Australia and The Northern Territory. We aim to: Educate the public to accept persons with epilepsy as equal citizens and encourage greater public understanding Remove any discrimination from persons with epilepsy and/or their families Advise and help persons with epilepsy, and their families Represent persons with epilepsy in being accepted with education authorities and all employer organisations Promote and provide information on epilepsy by way of pamphlets, advertising, films, articles, discussion and lectures to public and professional groups and the community Support research programmes and seminars into medical and social aspects of epilepsy Government funding would enable us to employ additional full-time nurses, social workers and counsellors to manage the enormous workload. These workers would help reduce hospital admissions, give families and individuals much needed support, train schools and workplaces and help improve community understanding - effectively ending the appalling stigma associated with seizures. It's time to recognise that epilepsy is indeed a Chronic Health Condition and to provide much-needed funding for The Epilepsy Centre. For more information please visit: www.epilepsycentre.org.au or Or like us on facebook https://www.facebook.com/theepilepsycentre/
Save our NRS
Save our NRS I am a National Relay Service (NRS) user and I use this service regularly to make calls to make appointments, clients, services, family members and so on. The NRS is an important service because it offers me the equivalency to telephony that cannot be replicated with 'cheap other options' mainstream communications. The current Request for Tender (RFT) only requires Emergency Services to be 24/7. Other services such as captioned relay, text relay, SMS relay, IP relay and Video Relay are not guaranteed full service and is subjected to bidder's capacity to deliver at a 'Value for Money' which is capped at $22m per annum. In 2016-17, the total operating cost for increasing demand for NRS was at $32m. With capped funding, this means my access to NRS may be limited or restricted. What's more, the Outreach Program is no longer offered. We need the Outreach Program because I see many people who needs NRS are unaware of this important service. I am worried. What happen if I am driving and my car breaks down in the middle of the road at 10PM and I cannot make calls because the service is unavailable? Or if I need personal support and I need to call a hotline but I cannot because the service is unavailable? Or if I need to urgently contact my family members to let them know of an immediate issue but I cannot because the service is unavailable? This lack of assurance is worrying and is not comforting to me, my family, and to my community. I need assurance. I need to feel safe in my community. I need to be seen as equal member of the community. Can you help me? Please stop the tender process undertaking by Department of Communications and the Arts so the requirements can be reviewed so our assurances can be met. I ask for NRS to: ensure that all services are operating 24/7, everyday of the year. restore Outreach Program so other can learn about how to use the NRS; and ensure that the NRS are appropriately funded. NRS is my equivalency for telephony service, I need them everyday for 24 hours a day. Please. stop. this. tender.
TAKE ACTION - SAVE PILATES
The 2015 Review of the Australian Government Rebate on Natural Therapies for Private Health Insurance concluded that the effects of Pilates as a treatment for a number of conditions (including low back pain) was uncertain. Since the Review, there has been a significant increase in the body of evidence (randomised controlled trials and systematic reviews) supporting the efficacy of Pilates as an effective Method for health. The removal of Pilates means that Health Funds are legislated against being able to provide rebates for Pilates services. This Rule could have a devastating affect on your studio, be it your business, place of work, or place of participation in Pilates. The adverse impacts of the change include:· individuals no longer being able to access Pilates services· potential increase in individuals accessing other allied health services with un-trained practitioners· will affect the economics of Pilates businesses (possible closure of studios)· could lead to increased and unnecessary medical and surgical interventions· could result in an increase of pain medications being prescribed unnecessarily· may lead to increased injury rates for older people · a lower quality of life and health for people who currently benefit from Pilates and may not be able to continue doing so· will result in the loss of GST revenue for GovernmentWhat do we want? The Rule to be amended to allow benefits to be paid for Pilates services when carried out by a trained Pilates practitioner with accreditation from a recognised Pilates industry body. What can you do? Sign the petition! What else? You could also help by writing to your local member of parliament, the Health Minister or your Health Fund, your GP and anyone of influence – let them know how this will affect you, how Pilates has helped you, what your business means to the community.
Meniere's Disease Medications URGENTLY Needed on the PBS
Over 40,000 Australians with Meniere’s disease need your help. Meniere’s disease has been described “as one of the most debilitating diseases experienced by people who survive any illness”.  The symptoms of Meniere’s disease can lead to sudden debilitating attacks, loss of employment, social isolation and loss of confidence and personal capabilities in everyday living activities, yet this life changing balance & hearing disorder receives no attention. FAMILIES ARE IN CRISIS “My sister killed herself because of Meniere's Disease. The attacks were coming with an unrelenting intensity that would last for weeks and months. The side effects of depression and anxiety is under reported and the cost of medicating this disease is ridiculous, particularly for people that simply can't work because they can't leave their bed.” - Leah F, NSW “My Mum suffered from this for her entire adult life. I can remember her losing control on many occasions and falling flat on her face on the floor. As a child it frightened the hell out of me. She couldn't drive, go out alone or do any of the things that most folk take for granted.” - Kim C, Dagun “I'm signing because I use Serc regularly to control my Ménière's disease. I experience debilitating attacks of vertigo that confine me to bed often for more than 24 hours at a time. Serc helps with these symptoms. It is not a nice extra in my life but a necessity as I care for my terminally ill husband. It should be on the PBS so that it can be obtained like any other necessary drug.” - Caroline B, Australia 1 in 600 Australians have Meniere’s disease, this equates to approximately 40,120 Australians (more than double of those with Multiple Sclerosis) but where is the community awareness or government support? “Patients with Ménière’s disease are severely incapacitated by their illness. In acute episodes, Ménière’s disease seems to be one of the most debilitating diseases experienced by people who survive any illness. All instruments seem to indicate that Ménière’s disease is serious in its physical and mental health consequences.”  Symptoms include fluctuating low frequency hearing loss, aural fullness, tinnitus, dizziness, vertigo attacks, brain fog, depersonalisation, nystagmus, and frightening drop attacks. FINANCIAL STRESS FROM EXPENSIVE MEDICATION “I am myself in the process to see if I have Meniere's and have started on medication. As a pensioner I was disappointed that the medication is not on the PPS. In fact, I delayed getting medication due to lack of funds.” - Kaylah H, Australia “I have Menieres and on a small income. Other medications I need to take that are not on PBS in addition to Serc are causing financial and emotional stress, when I can't afford them when I am unwell with Menieres and can't work and subsequently don't get paid. To have Serc on the PBS would relieve a great deal of pressure on me and my family.” - John H, Australia As scary as Meniere’s disease is, what is perhaps more alarming is that there is currently no medication benefit on the PBS for Australian’s struggling with the condition. So in addition to dealing with a debilitating chronic illness and the financial hardship that accompanies it, sufferers must also spend thousands of dollars each year on expensive medication just to maintain some quality-of-life, employment and social interaction. EXPENSIVE MEDICATION NEEDED TO SURVIVE “I can't survive a day without medication but they are just so expensive.” - Hazel S, Australia “I have Ménière's disease and currently spend over $120 a month on medication.” - Lesley C, Quakers Hill “I have Ménière's Disease. Currently I am unable to work, and Serc is currently costing me approx $20 per packet. With the current dosage of Serc I am on, a packet doesn't last a week.” - Christine P, Flowerdale There are three medications that Meniere sufferers desperately need to manage their symptoms, but they are outrageously expensive, so many sufferers are going without their prescribed medication because they simple cannot afford it. $$$$$ Betahistine, ondansetron and valacyclovir are clinically effective, have proven efficacy, and are safe and cost-effective compared with other treatments available. MENIERE’S IS A LIFE LONG STRUGGLE “I have suffered with Menieres for over 30 years. Severe loss of hearing, nausea and frightening drop attacks. Medication has been essential. Medication is expensive." - Irene K, Ararat AUSTRALIANS CALL ON THE FEDERAL GOVERNMENT FOR SUPPORT “I work in the audiology industry and there is not enough support for this disease.” - Kirsty R, Australia “I have a good friend who suffers with this and struggles to afford the medication. It’s not fair! and it is not right!” - Tara-Louise B, Australia We call on your support to URGENTLY add these medications to the PBS for the benefit of people with Meniere’s disease, to alleviate the financial burden and improve their quality-of-life. Show you care. Please SIGN & SHARE this petition. Thank you for your support. For more in depth information on this petition, or to learn more about Meniere's disease and other chronic balance disorders, go to Whirled Foundation. You can help the advocacy work of Whirled Foundation by DONATING HERE. Source:  2001 QWB Study ‐ "Impact of Ménière's Disease on Quality of Life" by Anderson, John P.; Harris, Jeffrey P.
CHANGE FOR GASTROPARESIS MEDICATION AND ENTERNAL FEEDING ON THE PBS
Gastroparesis + NSW Government + NO PBS = Difficult times Gastroparesis is an incurable gastric motility disorder in which the function of the stomach is impaired. For myself and many suffers of Gastroparesis the stomach along with the digestive tract no longer process food and many suffers can no longer eat. Myself like so many Gastroparesis suffers, I am feed 24 hours a day, 7 days a week via a nasogastric tube, which is attach to a lifesaving machine that injects liquid feeds directly into my bowel at a very slow rate. So why do I need your help? People who suffer from Gastroparesis generally have to cease work, therefore relying on welfare payments. However with the added cost of lifesaving medication and feeds in NSW it is sometimes impossible to make ends meet. Lifesaving feeds and medication for Gastroparesis suffers is not part of the Pharmaceutical Benefits Scheme in New South Wales. In all other Australian states (excluding NSW) Gastroparesis patients are provided their feeds for free or at heavily discounted price. Why are NSW Gastroparesis sufferers not treated the same? Why does the NSW Government want suffering for Gastroparesis patients to be worse? This needs to change, as Gastroparesis suffers are falling between the gaps and the NSW State Government is letting us down when we’re already feeling beaten. Sign this petition to: Have Gastroparesis associated medication part of the Pharmaceutical Benefits Scheme in NSW Have lifesaving feeds provided free like most other states Have medical supplies affordable for sufferers Provide the sufferers of Gastroparesis a better quality of life I will personally deliver this to the Australian Health Minister and lobby this change for all Gastroparesis suffers. No one state is more important than the other. xoxox Charmain
Ongoing funding for Indigenous workers in Aboriginal Independent Community Schools.
The federal government is poised to cut millions of dollars in funding to Aboriginal Independent Community Schools, as they transition away from the Indigenous Advancement Strategy. The funding has been offered for over a decade in order to employ Indigenous staff in a range of jobs. These jobs include: - Indigenous language teachers - Aboriginal Teaching Assistants - Cooks - Cleaners - Groundspeople - Receptionists These jobs are vital for the ongoing success of children in these schools. Aboriginal workers provide daily support through language translation, behaviour management, lesson planning, promotion of healthy lifestyles, cleaning classrooms, liaising with community members and ensuring that teachers, principals and students are supported on a daily basis. Without this funding, school workers in Yiyili, Yakanarra, Frog Hollow, Kulkarriya, Nyikina Mangala and Wulungarra are at risk of losing their jobs. This will have a detrimental effect not only on the students that these workers support every day, but also the wider community, as it will remove crucial wages from family groups and put livelihoods at risk. Given the important work that has already been done in these schools, it is crucial that the federal government re-commit to extending this funding for years to come. Through ongoing funding we can continue to exact generational change in these communities, providing quality education to children so that they are future leaders in the community.
Don't Dam the Donnelly River - STOP the Southern Forests Irrigation Scheme
The Southern Forests Irrigation Scheme has received commitments from State and Federal governments for $60 million to fund the development of an unnecessary and environmentally destructive dam and irrigation pipeline system in the South West of Western Australia - its effectively another Murray Darling Basin. The Scheme is a proposal to: build a concrete weir on the Donnelly River in West Manjimup construct a 15 gigalitre (that’s 15,000,000,000 litres) storage dam, which will require the destruction of 160 hectares of forest, with associated flora and fauna and disruption of users of the Bibbulmun track. Water will be pumped from the Donnelly weir to this storage dam. install power supply towers, pumping stations and 253 km of pipeline to redistribute 9 gigalitres of water per year to between 60 and 70 users in Manjimup-Pemberton region. do all of this with a massive tax-payer subsidy of $60,000,000. (That’s 6 taxpayer dollars for every $1 contributed by the proposed users of this water.) deprive smaller agricultural and horticultural producers in West Manjimup of access to water for larger-scale farming activities in the same area. These smaller farmers are all self-supply producers who use water with minimal environmental impact, and at no cost to the taxpayer. While this scheme purports to increase the availability of food production land in the region, in fact all it would achieve is the relocation of food production. The river will be dammed for a pipeline which benefits just a handful of wealthy farmers in one area, while depriving other food producers in the Donnelly catchment of the right to build their own dams – all at the cost of $60,000,000 of taxpayer funds and irreparable environmental damage. Food producers in West-Manjimup supply their own water through dams they have built on their land as part of crop planning. In an area of high rainfall, with significant further food production capacity within the catchment, there is absolutely no need for a dam on a river, or a pipeline that will cause irreparable environmental destruction. This scheme is neither economically, nor environmentally justifiable. We want to STOP the Southern Forests Irrigation Scheme. We want politicians and the tax-paying public know that the Southern Forests Irrigation Scheme is NOT supported by the majority of people in the region. Please help us by signing this petition and letting politicians know we don’t want another Murray Darling Basin.
Pass Australian Glass-Steagall Bill to break up the banks
To the Commonwealth Parliament: Pass Australian Glass-Steagall Bill to break up the banks The Financial Services Royal Commission’s exposure of banking misconduct and crimes proves that the banks must be broken up. Traditional commercial banking, of taking deposits and making loans, should not mix with investment banking, insurance, stock broking, funds management, financial advice, superannuation, hedge funds and private equity funds. These activities expose banks and their deposits to risks, and their cross-promotion by banks is a conflict of interest that makes customers vulnerable to exploitation. Australia needs a Glass-Steagall separation of commercial banks from all other financial activities. The USA’s Glass-Steagall Act protected Americans from financial crises for the 66 years it was in force, from 1933 to 1999. Parliament must pass the Australian Glass-Steagall legislation drafted by CEC Australia, the Banking System Reform (Separation of Banks) Bill 2018, which Bob Katter MP has announced he will introduce as a Private Member’s Bill, to break up the banks and protect bank customers and their savings.
Australian National Health Record
National heath records will be created for all Australian by November 2018. Recently, Australians have been advised via the media that there is an My Health Record "opt out" date announced - for those who do not wish to participate. For many Australians, this is the first time they have heard about the National My Health Record. Considering health records contain very private and personally identifiable information which could be open to abuse and hacking, it is vitally important that Australians have been communicated to and provided with all legislation and security controls around the new My Heath Record data. So far - the Government has done a poor job of this communication and has sticky taped an "opt out" mechanism for those who do not wish to take part in the scheme. By signing this petition, you are telling the Government of Australia, the Minister for Health Mr Greg Hunt and the Australian Digital Health Agency that you want more open, partisan and multi-way discussion about the My Health Record platform and the implications of security and controls of these digital records. Also, we want to understand precisely, the benefits of this to us - the Australian Public. Questions that need to be answered might be: 1) What gives the government the right to control my personally identifiable health records ? 2) How do I know that my records are safe and secure ? 3) Who has access to what information - and under what circumstance can my health record be accessed ? 3) Why not an "opt in" mechanism , so that Australians can understand the benefits and are comfortable with security, before they sign up for this scheme ? An opt out mechanism may leave many Australians' records open to abuse when first launched. 4) What controls are in place ? How will we know if there is any breaches of confidential information 5) What national and international penalties are in place for people, organisations or governments who may breach the conditions of use of the My Health Record systems ? 6) Provided there are adequate security and controls around the My Health Record data, what benefit is this scheme to the Australian Public ?
SHOW YOU CARE: Change the law to allow ethical CCTV in care homes across Australia
that's life! magazine's Show You Care campaign is calling for the government to legislate for the use of ethical video surveillance in private rooms of aged care facilities, with the permission of residents or their family members/guardians. Noleen Hausler's dad, Clarence "Clarry" Hausler was assaulted repeatedly by his carer, who held a napkin over his face and violently shoved food in his mouth. She was only able to catch the abuse because she placed hidden cameras in her father's room. In June 2016, Clarry's carer Corey Lyle Lucas pleaded guilty to two counts of aggravated assault against Clarence Hausler and received a six-month jail sentence. Sadly Noleen's beloved dad passed away in 2017, aged 91. In his honour Noleen is calling for video surveillance to be allowed in private rooms of aged care homes. No Australian aged care resident should endure the abuse Noleen's father had to suffer, but those who wish to use video surveillance are putting themselves at risk of a criminal prosecution. that's life! believes every resident has the right to quality care and to feel safe from the threat of abuse. If you believe that too please join our Show You Care campaign and sign our petition.