NEWS

ABC The World Today.

For all the attention paid to people with a disability their brothers and sisters tend to remain in the shadows.
They've been described as a "silent army", but they often find it difficult to let their needs be known because the person with a disability dominates family life. This is despite siblings helping with the care of their disabled brother or sister often throughout both of their lives.
A national survey has shed some light on their plight and a dance company in Adelaide has staged a production focussing on siblings' experiences.
This radio documentary features siblings between 14 and 53 years of age talking about their experiences as "the other child".

Click to read full transcript and/or listen to/download audio.

The NSW Council for Intellectual Disability has compiled a series of factsheets relating to the health needs of parents and carers of children and adults with disabilities, as well as those they care for. Included in the factsheets is information on:
- Getting the most out of Medicare
- Finding the right help
- Early diagnosis and intervention services
- Self-care
- Rights and complaints
and much more...

The Chair of General Purpose Standing Committee No.2, Ms Robyn Parker MLC, has recognised that interacting with the education system can be frustrating and confusing for parents of a child with a disability or special needs, as they attempt to ensure that their child gets adequate support. Both teachers and parents are concerned about the adequacy of funding. The Committee will investigate best practice approaches in determining the allocation of funding to children with a disability or special needs.
Issues to be covered by the terms of reference include: Level and adequacy of current special education places; Adequacy of support services for children with a disability in mainstream school classes; Provision of a suitable curriculum for intellectually disabled and conduct disordered students; Access to professional support services, such as speech therapy, occupational therapy, physiotherapy and school counsellors; Adequacy of pre-service and post-service teacher training.
Public hearings will occur on 22 and 23 March 2010. Closing date for written submissions is Friday 19 February 2010, to: gpscno2@parliament.nsw.gov.au, or NSW Parliament's website or mail to The Director, General Purpose Standing Committee No. 2, Parliament House, Macquarie Street, Sydney NSW 2000.

To comment, phone Robyn Parker, Committee Chair, on 02 9230 3332 or 0427 015 049.

Saint Jax on the Mount is an open plan building to be shared for the provision of respite, tranquillity and healing for children who are differently-abled, their families, carers and friends. The building is approximately 20 years old and was originally designed as a church. The building premises are in Mount Victoria, off the road to Mount York.
Who can visit or stay at Saint Jax on the Mount?
Differently-abled children, their families, carers and friends are welcome to visit or stay. It’s best to book to avoid disappointment.
When can Saint Jax on the Mount be visited?
Bookings are available all year around. You may visit or stay at Saint Jax on the Mount on your preferred day or dates, provided no other events or bookings are already planned and/or booked.
Where is Saint Jax on the Mount?
Saint Jax on The Mount is located at:
18 Matlock Street, Mount Victoria, NSW 2786

For more information or bookings, please contact Judie Stephens on 0419 393 393 or Marinela Mendes on 0418 22 40 31,
or e-mail: saintjaxonthemount@yahoo.com.au

Whether you're a working or a full-time carer, there's plenty of helpful information for all carers within these newsletters. This month is a best of 2009 newsletter, highlighting some of the best articles and information from last year.

The Blueprint Resource "Threads, Connections & Pearls of Wisdom" is now available in pdf via the link below. Hard copies can also be ordered at no charge by telephoning (02) 4784 2323 or via our online contact form on the home page.

The FamilyCare Workshops and the publication of "What about me..." A guide for caring has raised awareness of lifelong care and the need to equip parents with greater understanding, knowledge and attitude to handle the ongoing demands of caring for a son/daughter with a disability.

People who attended Family Care workshops contributed to the Lifelong Care Template (attached) and since June 2009 "What about me..." A guide for caring (attached) became available - it has been a wonderful time in fulfilling a dream that started with the thought that if this work helped at least one family, then it was more than worthwhile - it has done this.
"What about me..." was written by Terry Ryan and his son Christopher and provides a parent's perspective on being a carer.

Please feel free to use the template to update/start your own Lifelong Care Plan.

"As you might know, there’s a proposal to introduce a National Disability Insurance Scheme for everyone who has, or acquires, a significant disability.
Those who acquire a disability through a workplace or a motor vehicle accident generally receive financial support. However, for those who acquire permanent disabilities in other accidents, are born with a permanent disability, acquire a permanent disability through a medical condition or have a permanent mental illness, there is no automatic support to meet their needs. This is a national disgrace and an issue for every Australian. It's time to introduce a new national safety net, ensuring peace of mind for all Australians should they or someone they love become severely disabled.

Visit www.ndis.org.au (link below) and use the very easy 'Email your MP' function to express your support", or email Bill Shorten, Parliamentary Secretary for Disabilities and Children's Services, to show your support.

Source: Justine Watson from CAPA.

The Family, Community, Housing and Youth Committee has launched its report on the inquiry into better support for carers entitled 'Who Cares ...?'
The Committee received more than 1300 submissions which told of carers and their families under serious financial stress, struggling to meet the everyday costs of living, including food, housing and transport.
The Committee has responded with 50 recommendations to provide much needed assistance to carers. They have given consideration to diverse options for reform to address deficiencies in the current systems of support for carers. In some areas, such as respite care and in-home assistance, the Committee has recommended an increase in expenditure so that supply of services more closely matches demand.
Importantly, the Committee understands that with adequate levels of appropriate support in place, most carers wish to continue to provide care for as long as they feel able to do so. It is therefore in the best interests of all concerned – carers, care receivers, governments and society – to share the responsibility of providing care more evenly. If realised, this will allow carers and their families to participate more fully in society through engagement with education, employment and social activities.
Click the link for more information and further links that will take you to the full report...

The Australian Government has provided a formal response to the report on the inquiry into better support for carers "Who Cares...?", addressing each of the fifty recommendations outlined in the report.

Researchers from the Social Policy Research Centre are conducting a study about children and young people who are caring for a person with disability or chronic illness, and are interested in finding out more about the lives of young carers and the people they care for. To do this, they are hoping to talk to both young carers (aged 12-25 years) and people receiving care (18 years and over) to participate in the study.
Young carers (12-17 years), young adult carers (18-25 years) and people receiving care who express interest, will be asked to participate in a short pre-interview questionnaire of about 15-20 minutes, followed by an individual interview of about an hour’s duration either face-to-face or by phone.
Everyone who participate will receive a $30 Coles/Myer voucher in appreciation for their contributions.
If you would you like more information about this study or would like to participate in it, please contact Samia Michail on (02) 9385 7800 or email: s.michail@unsw.edu.au

Included in this issue:
- Carers Week
- Changes to Carers Payments
- Free Counselling Services

Carers NSW conducted a survey in October 2008 to collect demographic data about Carers NSW members, non member carers, care recipients and information about the caring role and the then relevance of the Carers NSW 2008/2009 Budget Submission.

The key recurrent issues identified by survey respondents were the need for more respite services, accessible and adequate services in general, better financial assistance, more information and support for carers and greater awareness of carers in the community by health professionals and governments.

The Australian Government is urging parents and carers of children with severe disability to apply to Centrelink to test their eligibility for income support. Major reforms to the eligibility criteria for the Carer Payment (for children) were introduced in July 2009 . The Carer Payment provides income support to parents and carers who, because of the demands of their caring role, are unable to support themselves.
Under special implementation arrangements, parents or carers who apply before the end of September can have their payment backdated to 1 July 2009.
As well as broadening the eligibility criteria, the July changes also:
- Increase the range of medical professionals who can complete medical forms
- Give parents and carers access to the Carer Payment for short-term care periods of at least three months, but less than six months (previously care had to be provided for at least six months to qualify)
- Provide more sensitive and generous arrangements for parents and carers of children with a terminal condition or those with a child in hospital; and
- Enable automatic qualification for Carer Allowance, based on qualification for Carer payment.
The recipients of the Carer Payment would also benefit from upcoming increases to pension payments.
For more information please contact Centrelink on 13 2717, or visit the website (link below).

Livewire Siblings is a new free, safe and supportive online community for young people (aged over 10 and under 21) who have a brother or sister living with a disability, serious illness or chronic health condition. It is a place for them to meet other siblings, share experiences with people who understand what they are going through, and gain the skills and knowledge to help them feel more in control of their situation.
-Chat online and meet other siblings who understand what they are going through
-Create a blog about themselves or stuff they are interested in
-Enter competitions and win awesome prizes
-Read content and information created just for them
-Check out the latest music and games
-Post in forums and have their say
Chat hosts and moderators trained in adolescent health are online 7 days a week to ensure that Livewire remains a supportive and fun place. Livewire works with the Australian Federal Police to help ensure all members of Livewire remain safe while engaging with the community.

Log in to Livewire Siblings before May 30th, 2010 for your chance to win a Nintendo Wii gaming pack.
Just go to the website and complete the Livewire Siblings online registration. or contact the Livewire Support Team on 02 8425 5971.

Source: The Scene from The Spastic Centre

"Strengthening Community Links" is a community building project with a regional focus, covering the three local government areas of Blue Mountains, Hawkesbury and Penrith. Auspiced by Penrith Disabilities Resource Centre, the project has been funded By Western Sydney Area Assistance Scheme from 2005 to 2009. Strengthening Community Links is building onto the "Shifting Mountains" disability project which focussed on the Blue Mountains area from 1997 to 2002. To complete this project PDRC are requesting your help. They have developed three surveys to help them identify the following:
- How people with disabilities, their carers and service providers obtain information about services and activities in their area.
- Perceived gaps in services and activities for people with a disability and their carers.
- Barriers to accessing services and activities.
For more info contact Cheryl Lockwood, Project Manager, Strenghtening Community Links, Penrith Disabilities Resource Centre, ph 4732 2363, fax 4722 8168, email cheryllockwood@pdrc.org.au
The link below takes you to the carer survey which can be submitted online.

• Understanding autism spectrum disorders
• Choosing interventions
• Practical communication strategies
• Understanding sensory issues
• Managing behaviour
• Using play to develop early social and communication skills
• Looking after yourself as a parent
• Opportunities for parents to make links with other parents
This program has been especially developed for parents with young
children (0-6) with an autism spectrum disorder. Parents of children
who have features of autism but who have not yet had a formal
diagnosis are also invited to attend.
When: Monday evenings 19th and 26th of October, 2nd, 9th, 16th, 23rd & 30th of November, 2009.
7pm-9pm
(please attend all seven evenings)
Where: The Balcony Room, Club Burwood
3rd Floor, 97 Burwood Rd, Burwood, NSW
(Cnr George St and Burwood Rd)
Cost: $120 per person
or $150 per couple or 2 family members
(tea and coffee provided)
Parking: Unmetered from 6pm in George St or
Council Car Park in George St for $2 per hour
Queries: Aspect Building Blocks® Ph: (02) 8977 8341
Return forms by: Monday 12th October.
To obtain an application form please contact Blueprint on (02) 4784 2323.

The NSW Government and Lady Gowrie Child Centre have joined forces to help families who have a child with a disability starting school. Minister for Disability Services Paul Lynch said a DVD – Starting School: Stories from parents of children with a disability – identified strategies to ease the transition to school.
Some strategies include:
- You need to start planning early, one or two years before your child is due to start school.
- Before you start your search for a school it’s a good idea to choose an advocate, someone to support you as you support your child. This could be a friend, relative or someone from a support or advocacy service.
- Once you have chosen a school, you can begin working with that school in preparation for the school year. There can often be a need for the school to plan ahead to access any funding available to support your child.
The DVD features the stories of six families who tell of their experiences as they prepared for their child to go to school for the first time. Mr Lynch said that the information kit would be available on request to the Early Childhood Intervention Infoline 1300 65 68 65.

IDEAS produces six printed newsletters a year, keeping younger people with disability and people with aged related disability, their families and carers up-to-date and informed on services, products, workshops, forums and issues relating to aged and disability services. The newsletter is available in alternative formats on request.

The Companion Card is for people with a profound disability who always require an attendant carer to support their participation in community activities and venues. The Companion Card provides free access for the companion of a person with a disability to venues across the state, such as:
Hoyts, Greater Union cinema, Royal Easter Show, Sydney Aquarium, Australian Maritime Museum, Sydney entertainment Centre, Sydney Taronga Zoo, Sydney Museum, Power House Museum, Sydney Wildlife World, NSW historical houses, NSW National Parks, Hunter Garden and zoo, Sydney Opera House, Sydney Ballet Company, Sydney Dance company, Sydney Symphony, City Recital Hall (Angel Place), Jenolan Caves etc.

To find out more about Companion Card click on the link...
You can also call National Disability Services on 1800 893 044 for more info.

Carers NSW fund these groups to enable parents to meet and tell their story, give and gain support from other families and carers. The focus is on how to take better care of ourselves and not “burn out”. The groups deal with issues of family and relationships, the grief process and how to cope on bad days. They can help with the feelings of loss, isolation, exhaustion and the impossible role of parenting different children.
The groups run for 2 hours, 8 consecutive weeks and are run by a counsellor who is a mum of a child with Autism.
Fees for groups are based on need, not ability to pay; phone to discuss your circumstances. For further information and to secure your place contact Justine on 0414 237 383 or email: justinew@three.com.au

In a joint initiative Centrelink and Work Ventures, a not for profit organisation, are giving Centrelink customers the opportunity to access low cost personal computers (PCs)

Call Work Ventures on 1800 112 205

This inquiry was established in June 2008 to inquire into and report on the Program for Appliances for Disabled People. The final report was tabled on the 15th December 2008

Free telephone interpreting services will be extended to pharmacies across Australia on an ongoing basis, the Parliamentary Secretary for Multicultural Affairs and Settlement Services, Laurie Ferguson, announced on the 8th December 2008.

Registered pharmacies around Australia will be able to access the service 24 hours a day, seven days a week.

Further information about TIS National can be found at the link below or by calling 1300 655 820.

A weekly segment on SBS radio to provide practical information for the frail aged, people with a disability and their carers.
Tune into SBS's Radio's World View Program at 5pm from the 19th November

For most children, their first bike ride is a rite of passage. But for children with a disability, this can seem unachievable.
With the help of a highly skilled and innovative team of therapists, engineers and volunteers at TAD, children with disabilities can now enjoy mobility and a form of recreation previously unavailable to them.

Family Development Services is running a siblings support program for young people (13-18 years) who have a brother or sister with a special need. This is a new program in the Blacktown Local Government Area and is open to siblings from other locations.
The aim of this program is to help siblings identify and use positive strategies for living with a brother or sister who has a special need. It also aims to assist siblings by providing opportunities to connect and share experiences with others and develop an understanding of what it is like to have a special need. To learn coping skills, improve self esteem, be provided with tools to enhance communication and build stonger family relationships.
This FREE program will run once a week for six weeks each school term in 2009, from 3:30 - 5pm.
Call (02) 96204194 for dates and to register your interest.
Bookings essential.

'Teen Time – After School and Vacation Support for Working Parents' is a new Stronger Together initiative which will specifically provide support for working parents and carers of secondary students with an intellectual disability attending school.
The Teen Time service will focus on supporting parents and carers to gain and maintain work or/and study commitments, through an after school and vacation support program.
Referrals can be made by contacting DADHC Information, Referral and Intake Team on 9841 9354.
The link is to a brochure containing more information including location and contact details.

Some families are planning to establish a social network for young people with Down syndrome living in the Nepean, Hawkesbury and Blue Mountains areas. "We wish to provide opportunities for kids with Down syndrome to feel relaxed and enjoy friendships with other kids who understand where they are coming from. We also encourage the involvement of siblings so that they, too, can feel that they can have the support of other siblings who understand what it is like to have a child with additional needs in their family and to whom no explanation is required. Like many activities, this idea will either succeed or fail depending on the commitment of the families involved. This is not a funded project, it will require parental involvement to help with the organisation and conduct of activities. It is intended that activities be inexpensive and located in our areas".

For more details please contact Helen at helenhaigh@bigpond.com or Kathie at kb42@iinet.net.au

Carers 2020 Virtual Summit Report:

The report 'Don't Wait: Carers say listen and act now' was prepared by the News Research Group at the University of Canberra. Its aim was to document the areas identified by participants of the Virtual 2020 as being in need of change.
The 2020 was an event held throughout August 2008 to look for and explore big ideas that would improve the support currently available to Australia's growing population of carers and their families.
It was open to anyone who felt they had something to contribute to this critical issue - but was particularly designed to allow as many carers as possible to participate at a time that suited them and from a place that suited them.
Over the course of the month, people from all over Australia were involved as word gradually spread.

The NSW Government is supporting families facing significant difficulties in caring for their child or young person with a disability through funding of $1.4 million.
Minister for Disability Services Paul Lynch said families in the Cumberland, Prospect, Nepean and Northern Sydney areas would benefit from the funding under the Family Support Program.
Uniting Care Burnside will deliver the services, part of a $5 million State-wide allocation, Mr Lynch said.
He said that the extra $5 million would help at least 100 families, depending on the level of support they needed.
"The funding provides services tailored to a family's individual circumstances so they can maintain the care of their child or young person," Mr Lynch said.
"Caring for a child with challenging behaviours or high support needs, places enormous stress on a family and sometimes they find it extremely difficult to cope," he said.
The extended support could include access to:
-extra regular respite or activities that provided a respite effect
additional in-home support
-additional, or more intensive, behaviour management support
problem-solving around school issues
"Where a child or young person with challenging behaviours is not able to live at home, the extra $5 million can be used to help provide home-based care by a foster family or professional carer," Mr Lynch said.

Jointly conducted by the Australian Institute of Family Studies and the Department of Families, Housing, Community Services and Indigenous Affairs, the 140-page report examined the results of a survey undertaken in late 2006 of over 1000 carers receiving government payments

Dear friends,
Around Australia many people are looking after others who - due to illness, disability or frailty - can't look after themselves.

The selflessness of these unpaid carers is really admirable. Many of them report feeling exhausted, isolated, cut off from the world of work and under considerable financial strain.

The ACTU is preparing a submission for the Government's Inquiry into Better Support for Carers. If you or someone you know is a carer, we would love to hear your story.

How do you juggle caring and paid work? From a carer's perspective, what can the Government do to better support you?

If you have time to write to us with your thoughts this week, please email Belinda Tkalcevic on btkalcevic@actu.asn.au.

The ACTU represents 2 million union members and their families. We believe making submissions to government inquiries are a great opportunity to impact on policy and the lives of working Australians - and for that reason they are a really important part of the campaign for Rights at Work.

We'd love to hear from you,

The Rights at Work campaign team

Australians can now access their Medicare claims history on the Medicare Australia website. People are able, via secure online access, to view, save or print a record of their Medicare claims history statement for the 12 months preceding the date of request, as well as their Medicare tax statements.
People who wish to use the service need to register for online services at Medicare Australia Online Services or at a Medicare office. They will need to provide their Medicare card number, individual reference number (the number that identifies the order of those listed on the Medicare card) and date of birth.

Information for Young People and their families