Click on the title of a news item for more details,
or click here for our news on Current
Issues.
Tuesday, 11 Nov 2008
Advocating for your family member with a disability ‘How to be informed, passionate and have a purpose in advocating for your family member with a disability.’ When: Wednesday 19th November 2008 Where: Seminar Room 1, Technology Park Function Centre, 2 Brodie Hall Drive, Bentley [Plenty of parking is available.] Time: 9.30am registration for prompt start at 10am
People With Disabilities (WA) Inc’s final workshop in the Power of More than One series will be held on 19/11/08. Join us to find out about some of the key legislation impacting on people with disabilities and their families and carers.
Come along to talk with and learn from guest speakers, develop awareness and advocacy skills, and take time out to socialise and network with others. Guest Presenters: Clare Masolin - A member of the Carers Advisory Council will outline the Carers Recognition Act, plus share personal insights as a parent advocating for her child now that ‘we’ are in High School. Clare will also talk about her participation with carer–run support networks. Maxine Drake - Senior Advocate at Health Consumers Council WA. Janet McLean – The mother of a young boy who has successfully lobbied governments and navigated her way through the system. Janet will share strategies to empower parents to advocate for the best outcomes for their child/adult. Kerry Allan Zinner – Chairperson of the Ministerial Advisory Council on Disability and a consultant on disability awareness issues.
This workshop will be of particular interest to those relatively new to the system and finding it difficult to understand the maze. It will conclude at 3pm.
R.S.V.P. by 14th November 2008 to info@pwdwa.org or 9386 6477 for catering purposes. Lunch will be provided. A program funded by the Disability Services Commission and Carers WA. Proudly sponsored by: The Government of Western Australia, Disability Services Commission, Carers WA and People With Disabilities (WA) Inc.
|
Wednesday, 5 Nov 2008
Down Syndrome WA: Strategic Planning Consultation Down Syndrome WA (DSWA) has asked consultants from E-QUAL and the UWA to talk to DSWA stakeholders about the future of DSWA. DSWA wants to know what it has done that has worked well for members, what else members want from DSWA and how DSWA can be more welcoming for new members. E-QUAL consultants will be talking to families and carers, volunteers and other agencies associated with DSWA via telephone and written surveys and face to face or video link meetings. UWA consultants will be talking to people with Down syndrome in two series of interactive workshops. The workshops will be participant-directed, as much as possible, and include a program of arts activities aimed at encouraging expression. Consultations will take place between November 2008 and February 2009. Individual feedback from stakeholders will not be identified and will remain confidential. The consultants will provide a report to the Board of DSWA in February/March 2009 describing the feedback from stakeholders. DSWA will use this feedback to further develop their Strategic Plan. |
Friday, 24 Oct 2008
Carers to benefit from $12 million local grants
The Australian Government has announced a $12 million national grants program to improve respite services for carers in their communities. “This is about allowing carers to have time to themselves or get a much needed break as they give so much to others,” the Minister for Ageing, Mrs Justine Elliot said.
Almost 2.6 million Australians provide care for family members or friends with a disability, mental illness, chronic condition or who are frail aged. Of these about 500,000 are primary carers – the people who provide the most care.
There are currently more than 600 community-based respite services for Australian carers. Community-based respite services are funded to provide respite opportunities in a variety of settings, such as:
• Day care centres which provide respite for a half or full day;
• In-home respite services, including overnight care and personal care services;
• activity programs;
• Respite for carers of people with dementia and challenging behaviour; and
• Flexible respite in community settings. In addition Minister Elliot launched the new Carers Australia website ( http://www.carersaustralia.org.au/) and a book of stories told by carers who look after disabled and elderly people. Information Source: AHHA E-Healthcare Brief - 21 October 2008 Additional Information
A Profile of Carers in Australia, 2008– ABS Report
Around 2.5 million Australians aged 15 years and over care for someone at home because of a disability or old age, according to a new report released by the ABS. A Profile of Carers in Australia brings together information from a range of surveys conducted between 2003 and 2006 to paint a picture of carers in contemporary Australian society.
|
Friday, 17 Oct 2008
CARERS WA
Carers WA is a non-profit community based organisation and registered charity dedicated to improving the lives of the estimated 250,000 family Carers living in Western Australia. Part of the National Carers Association, we are the peak body recognised both state and federally, as the voice of family Carers in the Western Australian community. Our role is to work in active partnership with Carers, persons with care and support needs, health professionals, service providers, government and the wider community to achieve improved quality of life for Carers. Carers WA offers programmes designed to meet the needs of Carers, including Social Support and Education. We also offer support within the hospital and mental health setting, and in an advisory capacity. Please feel free to contact us on the details below. Talking it over – 3 ways
Carers Counselling Line (24 hour) - 1800 007 332 Face to Face Counselling - 1800 242 636 Email Counselling – chat@carerswa.asn.au For some Carers, the caring role can be an emotional roller-coaster. Dealing with the multitude of issues and situations that caring can present can be incredibly draining.
Occasionally Carers may feel the need to take a break, get some practical assistance or just unload some of the emotional burden they are carrying.
Talking things over with another person can be a liberating experience. Many Carers who contact Carers WA’s counselling programmes just want to talk to someone who understands what they’re going through and who will support them in their caring role. By talking things through, giving voice to some of the feelings and problems that Carers are faced with, Carers can begin to address these issues with the support of the counsellor. It is often not easy to talk to family or friends about these feelings and issues. It is, therefore our aim to provide Carers with a “safe place” to express their emotions and access support in person or via the phone and email.
“I always felt I was failing as I couldn’t cope. The counsellors I spoke to at Carers WA reassured me and made me feel good about what I do. They were understanding of the uniqueness of my situation.” (Carer of someone with an acquired brain injury.)
CARE AND SHARE COFFEE DISCUSSION MORNINGS
FORTNIGHTLY WITH THE COUNSELLING TEAM AT CARERSWA
Commencing November 2008
Carer Centre, 182 Lord Street.
Come along and join us for coffee and cake as we share our stories with others. • Develop strategies and skills
• Hear other peoples stories of their caring role
• Share your experience with others of what its like for you to be a Carer
• Make connections with others who understand your situation
• Gain ongoing support
For further information on any of the above, please phone:
1800 232 636 or 1300 227 377 |
Wednesday, 8 Oct 2008
* Hard copies and alternative format copies are available upon request. |
Friday, 3 Oct 2008
MEDIA RELEASE
18 September 2008
Senses Foundation takes global leadership role for deafblind community Western Australia’s Senses Foundation has been awarded a lead role in the worldwide service development and advocacy for people who are deafblind. The Foundation has been successful in its bid to host the Deafblind International (DbI) Secretariat for the next four years. Senses is WA’s primary advocate and service provider for people who are deafblind or blind with additional disabilities. Chief Executive Officer Debbie Karasinksi says this appointment places Senses at the centre of the international community of service providers for people who are deafblind.
“Being the ‘hub’ around which the international deafblind community revolves allows Senses to be at the forefront of the sector,” says Ms Karasinski.
“We’ll have the latest information about what is going on in the world, be able to participate in vital decision-making and also communicate key findings to the deafblind community throughout the globe. “Having the DbI Secretariat under our care and management will also increase awareness of Senses’ work in WA and raise its profile on the world stage.” Deafblind International is the world association promoting services for deafblind people through international collaboration. Its purposes are: • to promote and improve the recognition and awareness of deafblindness as a unique congenital or acquired disability that affects children, adults and elderly people • to support the civil rights of deafblind people and the equalisation of opportunities in all aspects of life • to encourage the development of networks and opportunities for association and learning for professionals and to the benefit of deafblind people and their families • to enable interaction between deafblind people, families, professionals,
organisations in the field and the wider community • to promote and improve education and opportunities for development for
deafblind people • to encourage support and services for deafblind people that lead to selfdetermination and quality of life, and • to promote and improve quality in services for deafblind people by encouraging research, staff development and training, policies that lead to good practice and the dissemination of information. Senses’ Senior Manager Client Services Elvira Edwards has been named DbI Secretary and Bronte Pyett has been newly appointed as the Secretariat Manager. The pair recently travelled to New Delhi to ensure a smooth handover of the Secretariat from India. Senses Foundation was formed in 2001 when the Royal WA Institute for the Blind - one of WA’s oldest charities - amalgamated with the WA Deafblind Association. Senses is now WA’s primary advocate and service provider for people who are deafblind or blind with additional disabilities, providing highly specialised programs and services to improve communication, socialisation, mobility and quality of life for both adults and children. For more information about Senses Foundation, its advocacy and broad raft of services for the deafblind community visit www.senses.asn.au More information: Leanne Pitcher, Media Liaison Officer, 0408 923 249. |
Wednesday, 10 Sep 2008
Autism Conference 2009 Call for Papers Call for Papers - Asia Pacific Autism Conference 2009 (APAC 09)
Abstract submission closes: 5 December 2008 Organisation: Australian Advisory Board on Autism Spectrum Disorders
Venue: Sydney Convention and Exhibition Centre Sydney, NSW
Start Date: Thursday, 20 to Saturday, 22 August 2009
Call for Papers With its theme of Connecting Today: Inspiring Tomorrow, APAC 09 will bring together people with an autism spectrum disorder, families and carers, educators, researchers, service providers and practitioners from across Australia and the Asia Pacific region. It will inspire participants by providing opportunities to build relationships, explore intervention strategies, learn about new research developments and celebrate experiences and achievements and raise awareness about autism spectrum disorders in Australia and the Asia Pacific region. Anyone with an interest in autism spectrum disorders may participate in APAC 09. The Conference Organising Committee particularly invites papers and participation from: • academics and researchers
• people with an autism spectrum disorder
• families, carers and advocates
• autism spectrum support organisations
• clinicians, therapists and case managers
• teachers and educators
• accommodation, support and community participation services
• employment services
• recreation and leisure services
• policy makers
W: www.apac09.org |
Wednesday, 27 Aug 2008
Lowe Syndrome
A family from Western Australia who is living with Lowe Syndrome would like to make contact with others living with this condition. Synonyms of Lowe Syndrome
• Cerebro-Oculorenal Dystrophy
• LS
• Lowe's Disease
• Lowe-Bickel Syndrome
• Lowe-Terry-MacLachlan Syndrome
• OCRL
• OCRL 1
• Oculocerebrorenal Dystrophy
• Oculocerebrorenal Syndrome
• Renal-Oculocerebrodystrophy
• oculocerebrorenal syndrome
• oculocerebrorenal syndrome of Lowe Please contact Kristina at the Genetic Support Council of WA Ph: 08 9389 6722 |
Wednesday, 27 Aug 2008
Monomelic Amyotrophy
A person from Western Australia who is living with monomelic amyotrophy would like to make contact with others living with this condition. Synonyms: - Benign Focal Amyotrophy
- Hirayama syndrome
- O'Sullivan-McLeod syndrome
- Sobue disease and Single limb atrophy
|
Tuesday, 26 Aug 2008
Genetic information sheets
The National Medical Health and Medical Research Council (NHMRC) has developed a series of information sheets on contemporary issues in genetics.
» What is the human genome?
» What is the relationship between DNA mutations and genetic conditions?
» Why is genetic testing a potentially powerful tool in medicine?
» Are consent and privacy issues in genetics any different to other areas of medical practice?
» Direct to Consumer (DTC) DNA tests
» Genetic discrimination
» How genetic contributions to common diseases are found – genetic association studies
» Sequencing your genome
» Use of genetic information in sport
» Ethical issues in human genetics |
Tuesday, 26 Aug 2008
Living with a rare condition
The Genetic Support Council (GSCWA) is seeking feedback about starting a genetic support group for people affected by rare conditions/disorders and for whom there is no specific support group available.
Genetic support groups can be a useful resource for individuals and families living with a genetic. Sharing their knowledge, experience and support are one of the key services that these groups are able to provide.
The GSCWA conducts forums for members on issues of interest or concern to enable members views to be represented to the wider community and State and Federal Governments. Membership is free!
Any families or individuals interested in finding out more please contact Kristina.
Further Information
Find info on a rare conditions/disorders
Articles
Read about the various types of patient groups
Living with a rare condition/disease Online stories: |
Monday, 4 Aug 2008
Online: Rare Syndrome/Disease Support Group A thread for all those mums who have beautiful children suffering from rare genetic disorders, rare syndromes and rare diseases. About the overall website: Essential Baby
Essential Baby hosts the largest and most active parenting forum in Australia with an average of 1500 members online in peak times, yet most of the time it feels like being at a get together with friends. The forums are supported by an amazing team of 35 moderators help to oversee more than 10,000 posts per day. EB joined the Fairfax Digital network as of January 2007. Operating one of the largest online communities in Australia was an extremely challenging job for an independent team, so the move into Fairfax Digital was an important step in ensuring the longevity of the site in the future. |
Monday, 9 Jun 2008
Multilingual Resources - The Centre for Genetics Education Documents
The Centre for Genetics Education has been involved in the production of several resources that have been translated in to a variety of languages. The resources below are avaliable from the NSW Multicultural Health Communication Service. "Prenatal Testing - Special tests for your baby during pregnancy" Arabic, Chinese, English, Farsi, Japanese, Korean, Thai, Vietnamese “How can Genetic Counselling Help?” Arabic, Chinese, Croatian, English, Italian, Korean, Portuguese, Russian, Spanish, Thai, Turkish, Vietnamese |
Monday, 19 May 2008
 Directory of Genetic Support Groups and Community Organisations - Available in PDF (Requires the latest Acrobat Reader)
- Online version is continually updated
- Please contact our office if you are having any difficulties downloading this document.
A printed A5 directory cost: $5.00 incl GST To Order telephone: (08) 9389 6722 or E: info@geneticsupportcouncil.org.au Please Note: PDF documents in this site are formatted using the Accessibility Features in-built to Adobe Acrobat 8.0. To access PDF documents requires the latest Acrobat® Reader® software which is downloadable free of charge. 
Attention visually impaired visitors: To use common screen reading programs with PDF documents, please visit access.adobe.com, which provides a set of free tools that convert PDF documents to simple HTML or ASCII text |
Wednesday, 2 Apr 2008
Multicultural Mental Health Australia (MMHA) new mental health resources for everyone MMHA has released a number of new mental health resources with a couple of leading agencies. MMHA launched its What Is series of
mental health fact sheets in over 20 languages at the recent Diversity In Health Conference in Sydney. The 10 topics cover issues surrounding mental illness,anxiety, bipolar mood disorder, eating disorders, depression, personality disorders, schizophrenia, challenging behaviours and suicide. The fact sheets are available from MMHA in Amharic, Arabic, Assyrian, Chinese, Croatian, Dari, Dinka, Farsi, Greek, Italian, Khmer, Korean, Krio, Macedonian, Polish, Russian, Serbian, Spanish, Swahili, Turkish and Vietnamese. The English versions are available from the Mental Health & Workforce Division of DOHA – 1800 066 247. The series has also been adapted for people with a print disability. - MMHA and Australia’s leading provider of blindness and low vision services, Vision Australia, have produced the series into braille, large print, electronic text for the internet and audio formats such as CD, cassette and DAISY for those with a print disability. These are also avaiable from MMHA.
|
Tuesday, 3 Jul 2007
Checklist for families A checklist has been developed by the Genetic Support Council of WA, as a resource for families. It is intended as a prompt, to help you to think about some services you may wish or need to access. Not everything on this list will be relevant to your family at this time. Remember, you are not alone and we would like to help you access the services you need to care for your child. |
Tuesday, 20 Feb 2007
Online Resources For Support Groups Contains information about starting a group and support for existing groups, grants, creating free websites, computer and technical/software resources. Available: |
|
|
