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T h e N e wsletter of Carers Victoria W in t e r 2 0 0 9 Carers in Victoria A look into the future... carers and planning

Carers in Victoria · Carers in Victoria Winter 2009 2 Carers in Victoria The quarterly newsletter of Carers Victoria ISSN 1445 ... my sister’s keeper 16 This year our Mingle events

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Page 1: Carers in Victoria · Carers in Victoria Winter 2009 2 Carers in Victoria The quarterly newsletter of Carers Victoria ISSN 1445 ... my sister’s keeper 16 This year our Mingle events

The Newsletter of Carers Victoria

Winter 2009

Carers in Victoria

A look into the future... carers and planning

Page 2: Carers in Victoria · Carers in Victoria Winter 2009 2 Carers in Victoria The quarterly newsletter of Carers Victoria ISSN 1445 ... my sister’s keeper 16 This year our Mingle events

Carers in Victoria Winter 2009

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Carers in Victoria The quarterly newsletter of Carers Victoria ISSN 1445 - 6761 2009: Issue No 2 (Winter)

Carers Victoria

Level 1, 37 Albert Street (PO Box 2204) Footscray, VIC 3011 Phone: 9396 9500 Carer Advisory Service: 1800 242 636 Fax: 9396 9555 TTY: 9396 9587 (textphone for the hearing impaired)

Email: [email protected] Website: www.carersvic.org.au

If you would like to advertise in Carers in Victoria, please contact Carers Victoria Publications on 9396 9500 or email [email protected]

Carers Victoria is funded by Victorian Department of Human Services, Federal Departments of Health and Ageing, Family and Community Services and Veterans Affairs, Trusts and Foundations and the generosity of the community.

Incorp No. A0026274MABN 12533636427

inside this issue…

2 across my desk2 hoyt’s movie deal3your say3hot topic question4-5 feature article: carers and

planning6-7 emergency planning6imminent danger: a

carers experience of black saturday

7 money management for working carers

8 a tribute to a special friend8I’d like to speak to a

counsellor, but9will I or won’t I?10-11 for young carers12 reflections of you and me13 DVA feature: your privacy13 need a new fridge or

washer?14 grocery budget busters14 seniors rights legal centres15 how to feed your family for

$75 a week15 book review: my sister’s

keeper16 carer story: Kerry McDougall17-18 mermbership form19 laughing matters19 member prize draw19 crossword19 events calendar20 the business end

across my deskHello to everyone - and welcome to the winter issue of Carers in Victoria

The days are getting crisp and cool – I hope you are all staying warm As I write this I’m enjoying the last days of spectacular autumn colour in my garden and I am planning a weekend of raking the fallen leaves and chestnuts to mulch my garden beds

What a pleasure it was to meet with some of you at our recent Mingle events! We visited four regions in Victoria (Geelong, Ballarat, Bendigo and Traralgon) and then finished up with an event in Melbourne Brilliant planning and organisation by staff ensured that the events ran smoothly and were enjoyable for all Next year we are planning to take Mingle to other regions in Victoria

This year our Mingle events were made even more special with the help of Roland Rocchiccioli who chatted to carers and made us all laugh Did you know that Roland spent ten years caring for his mother, and is now planning a stage production based on his experience? Look out for more news about Roland when we let you know what we are planning for Carers Week

There’s that word again Planning Many families have told us that

caring is made more stressful due to its unpredictability Many carers also tell us that it is too confronting to think of the future And of course there are other carers who are just too busy to think about next week, let alone what may happen in years to come

This issue of Carers in Victoria is all about carers planning for the future I hope these articles will be a useful first step - to help face the unknown – and perhaps provide some peace of mind

My Dad always likes to say “Cheer up, it may never happen” As a self-confessed serial planner, I like to think that I can better enjoy the present if I feel better prepared for the challenges of the future

Until next time, rug up and take care!

We are pleased to announce the continuation of our fantastic deal with Hoyts Cinemas.

Carers pay only $1 entry to Hoyts cinemas when accompanying the person they care for.

Simply show your Carers Victoria membership card and some identification at the box office – then enjoy the movie.

Stay tuned for more member discounts in coming newsletters!

Hoyts movie deal update

Front image: © 2007-2009 Rivendell-PhotoStock

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your say... your say.... your say.... your say...

From the Hot Topic line... Carers talk about how they spent their stimulus payments...

•I spent $1395 on a new electric chair for my beloved Barbara who is in nursing home care

•What I received in the bonus helped me to pay for some Christmas expenses, to pay some bills, but also to help put into my bank account so I could have a nice time when its my 80th birthday But I would also like to see people getting more help with their aid particularly the carers of the people who are very ill

•I spent the money on a refrigerator

•I used the money they sent me to buy blinds for my disabled daughter’s window and my wife’s window because their bedrooms aren’t dark enough at night

On the Hot Topic phone poll...

What do I want as a hot topic?

More say on what they do with the wife All this “I can’t tell you because you’re not the patient” business gives me the irrites I suppose that would help More legislation that gives the carers rights looking after the consumer

On working and caring...Of course, the work day doesn’t commence at 9 am for a carer T here are duties prior to and during preparation for my work day I am on call for both my daughter and son I may rarely be called away from work, but the possibility is ever present, hence my work day is undertaken with underlying stress and tension

Current carer duties involve me driving in peak hour traffic for approximately one and a quarter hours to collect my daughter and take her to a course, before 9 am I then rush to my workplace, worrying that I haven’t been able to take my son to school My son walks to school on those two days and I am left with guilt and conflict of mothering/caring duties

At work, do I leave my mobile phone on? Do I carry it around with me on silent and risk losing it or being distracted from my work? I leave it on in my handbag, in a room where I can pop in and check for messages And I worry

When my work day is over I collect

my daughter and drive her homeThere are often issues to be discussed during this time

My employer is absolutely wonderful when it comes to my role as a carer My previous employer, was not

I plan appointments outside of work hours and I am able to take unpaid leave during all school holidays

There are days when I must be at home instead of work My employer allows me to either make up those days, or take them as either sick or carer days I feel very fortunate I also feel very guilty Guilty about not being at work and guilty about wanting to be at work The conflicting feelings are quite intolerable, resulting in a great sadness

But, these feelings must be hidden from those I love and from the elderly I care for at work

I also feel I cannot truly express my feelings to my work colleagues I do not wish for sympathy and must get on with my lot There are many more in worse circumstances than myself

Truly though, working and caring can be done but at a continuing great cost to the carer

~ RosalieCongratulations to Rosalie who won a set of juggling balls from Working Carers Gateway.

Have your say: Hot topic questionThe assessment criteria for the Centrelink carer allowance/ carer payment is currently being revised, because it does not capture the full extent of the caring role.

What would you like to see included in the assessment criteria?

Call the Hot Topic poll line on 9248 9650 or email [email protected] and have your say

Reponses may be published in the next issue of Carers in Victoria

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Carers in Victoria Winter 2009

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Anyone, anytime… a baby is born with a disability, a teenager suffers an acquired brain injury in a sporting accident, a woman is diagnosed with breast cancer. For many families, caring is sudden and unexpected and the caring journey will continue to be marked by random changes and unforseen challenges.

It is this unpredictable nature that is often one of the most stressful aspects of caring. Just when you think you have worked out a system, something new crops up to increase your anxiety and blood pressure!

Contrary to our cover image, there is no crystal ball to predict what is around the corner. The best we can do is plan for some of life’s possibilities.

Planning involves thinking about your goals and expectations, and exploring the options available to you. It means having a scheme, or a strategy that allows you to be better prepared for the unexpected.

Many carers are so caught up in the day to day of caring that there is understandably little time or energy to think about planning for the future. Some of the issues may be too sad or difficult to contemplate. But imagine how much more difficult these tasks would be if they were made in response to a crisis at hand.

There are many different aspects of planning that carers can consider. Here are a few ideas to get you started.

Care planningMany caring families will be familiar with care plans which record details of medications, treatments, service providers, and goals for the person with care needs. But what about the carer? Take some time to think about your own health and wellbeing and think about some goals you would like to achieve (for example improving your health/fitness, social and relaxation opportunities). Your personal care plan can help you to map small, achievable steps to work towards these goals.

Respite planningPlanning for regular breaks is a sensible strategy to avoid carer burnout. Commonwealth Carer Respite Centres (1800 159 059) can give you information on respite options in your local area. Don’t forget to think about your own networks – family, friends, neighbours. It’s ok to ask for help, and others might find it easier to accommodate a request in advance, rather than at short notice. See the article “Emergency planning” on page 6 for more information.

Financial planningCaring can have significant impacts on family finances. For assistance with money matters, consider getting some professional advice.

Centrelink

Financial Information Services (13 23 00) can provide information on a wide range of financial services. The Australian Securities and Investment Commission (1300 300 620 or www.fido.asic.gov.au) also offers financial tips and budgeting resources. And don’t forget to take advantage of any concessions that you may be eligible for by contacting the Deptment of Human Services (1800 658 521 or www.dhs.vic.gov.au/concessions).

Legal mattersFor legal advice, you can start by contacting Victorian Legal Aid (1800 677 402 or www.legalaid.vic.gov.au). They can provide you with initial information and put you in contact with an attorney for little or no cost to you.

Work and careDeveloping a career plan can become more complicated when you are a working carer. For ideas on how to juggle work and care visit www.workingcarers.org.au and for general career information try Centrelink’s Career Information Centres (1800 048 525 for Melbourne and 1800 706 455 for Geelong).

Transition planningWho will look after my family member when I die? How do I arrange for my family member to enter residential care? What will I do when I am no longer a carer? These are difficult questions, but proper planning can minimise stress and give you peace of mind. See our articles “Who’s got the power?” on page 5 and “Will I or won’t I?” on page 9 for more information.

Too much to take in? Take your time to read and think about some of the issues raised in this newsletter. It is worth remembering the words of Abraham Lincoln who said “The best thing about the future is that it comes only one day at a time”.

Carers and planning

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5Our gran had Alzheimer’s and after a hip replacement her confusion became worse It was very apparent that we could no longer care for her at home The very difficult decision was made to place her in a nursing home

On admission the nursing home staff asked us if Gran had expressed her terminal wishes We had talked about this as a family and knew her views

An Enduring Power of Attorney had been signed so we had her permission around medical care We also knew that she did not want to linger without good quality of life

Documenting her terminal wishes with the staff was very confronting It saved us and Gran so much grief

Gran died peacefully We were all present and had a chance to say our goodbyes

I learned so much from Gran’s death The need for planning is paramount Gran’s death was sad, but she left us with a great legacy The family conversations around planning have resulted in us all putting advance care plans in place – even the grandchildren

A carers perspective ... Sue S

What would happen if you were no longer able to make decisions on behalf of the person you care for?

The law assumes that we have capacity once we turn 18, however, many people lack capacity due to intellectual disability, mental illness, an acquired brain injury, accident, stroke or dementia.

Capacity means that you know what you are doing. You understand the consequences of your actions and you make choices based on your knowledge and understanding. If you have capacity you can consent to medical treatment, make a Will and appoint enduring powers of attorney.

Enduring powers of attorney are set up so that decisions can be made for you when you lose capacity. Your appointed attorney will do this until he or she resigns, he or she becomes bankrupt or incompetent, you pass away, you cancel it (while you have capacity) or the Victorian

Civil and Administrative Tribunal (VCAT) cancels it.

When we make decisions on behalf of another

person it is important to

consider moral and

ethical

implications. You should make wise appointments with adequate safeguards. For example, you can require your attorney to keep others informed about the decisions they make. However, it is essential that you have clearly communicated your wishes and expectations to your appointed attorneys and that they accept the appointment.

VCAT has developed a framework to guide appointed attorneys. They are:

· recognise the person’s right to participate in decisions

· respect the person’s worth, dignity and human rights

· recognise the person as a valued member of the community and encourage self reliance and community participation

· take into account the person’s supportive relationships, values, culture and language

· ensure decisions are appropriate to individual characteristics, needs and wishes

· ensure confidentialityBefore appointing an attorney, consider the skills and interests of family and friends, because you can appoint more than one person. See the box on this page for the different types of enduring powers of attorney. Appointing people who will be able to work together will also make managing things a lot easier.

To appoint an enduring power of attorney, you can use the forms

produced by the Office of the Public Advocate. These are

available for free in a book called Take Control,

which you can order

from Victorian Legal Aid (1800 677 402). For further information or to download Take Control, contact the Office of the Public Advocate (www.publicadvocate.vic.gov.au or 1300 309 337).

Carers Victoria is currently looking into the experiences of families caring for someone over 18 years of age with impaired decision making capacity. We would like to hear about your needs in terms of planning for the future of your son or daughter. We are also interested to hear about the experiences of carers who have applied for guardianship and administration through VCAT.

To participate, contact Penny Paul, Carers Victoria, Coordinator Carer Consultations (9248 9628 or [email protected]).

the powers that be

Enduring power of attorney financialGives your appointee(s) the power to make financial and legal decisions on your behalf, like signing a legal document, selling property and doing your banking

Enduring power of attorney medical treatment Gives your appointee(s) the power to make medical decisions on your behalf

Enduring power of guardianship Gives your appointee(s) the power to make lifestyle decisions on your behalf

Who’s got the power?

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Emergency planning means considering anything and everything that could happen This includes serious injuries, fires, floods, power outages, vehicle breakdowns and lost keys At the very least, your emergency plan should include the following information:

Emergency contactsHave more than one contact and make sure your contacts know that they have been selected

Health informationInclude doctor’s numbers, medicare numbers, health insurance details, medic-alert numbers and details about the

conditions or illness of the person you care for

Home and Community ServicesInclude services like your vet and local council or household services such as gas, electricity, water

Financial information Include bank account and insurance details and the location of your Will

Details about caring situationInclude what to do about things like mobility, personal tasks, meals and medications

After you compile your emergency plan, keep it in a safe place You can leave copies of the plan with friends or family, or store the information on a USB stick that you carry with you You can also store the information online, using services such as Google Docs (wwwdocsgooglecom)

Finally, make sure to update your emergency plan at least once a year, or make the necessary changes as they happen

To take the next steps in your emergency planning you contact the Red Cross (wwwredcrossorg

Emergency planning: What’s the worse that could happen?

Imminent danger: A carers experience of Black Saturday

West Gippsland, Black Saturday

Warragul, about 230 pm, ABC radio warned of imminent fire danger, ember attack and fire, eight kilometers to the northwest coming with the wind

Sky - dark as midnight, thick smoke we could taste, throats stinging, hosing down our roof, damping anything that could ignite around the house

My sister and I calm, but concerned Worried possibly - no time to be Many thoughts rushing though my/ our heads We had just lost our mother after 17 and a half years of careall to surreal

Friends/ family in extreme danger at Neerim, south to our north, Boolarra further east and Yarram How bad is it out there? How close to them?

Police close the freeway and the roads to the north

We are now cut off

For about 24 hrs, we didn’t really know?

Terry & Joy Stroud

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au) to get helpful information and tools to help you prepare household emergency plans and emergency kits A word on planning for emergency respite in an aged care facility

There may be times when you suddenly need to find alternative care for the person you normally care for You may suddenly become ill, you may be called upon to provide help for another family member or need to travel interstate or overseas to attend to urgent family matters These events can happen very suddenly, leaving you with little time to make arrangements for respite care

This is one of the reasons we encourage you to use residential respite in a planned way, before a crisis occurs Many carers are reluctant to use residential respite and put off doing so, but in an urgent situation, it will be smoother for you and the person you care for if residential respite has been accessed previously and is not a completely new experience

To assist with arrangements for emergency respite the following steps will help:

• Have an up to date assessment for respite care by the Aged Care

Assessment Service

•Become familiar with aged care facilities in your area

•Access residential respite on a regular basis

•Obtain an Emergency Care Kit to complete Keep it handy

For further information or to talk about these matters in more detail, please call your local Carer Respite Centre on 1800 059 059

Mary-Jane Wylie Carers Victoria Respite Connections

Emergency planning: What’s the worse that could happen?

Money management for working carers

Working carers are more likely to be on a lower then average income, with higher living expenses Before you reduce your hours or leave work, consider these options:

• find out about your rights to flexible work conditions

• talk to your employer about your situation and see if you can come to an arrangement so you can keep your job and still provide care

• talk to family and friends, and see if they can help out while you are at work

Most carers can also benefit from seeking advice on managing money Information on financial assistance is available to help with the costs of caring

Many working carers do not use Government funded services and assistance programs because they are too busy working and caring to ask for help and it is often difficult to know where to start the complicated application process It is worth contacting your local advocacy service as they can offer help with the Adult Disability Assessment Tool (ADAT) and completing your Centrelink paperwork

Part of successful money management is to make the most of available services and programs If you don’t, you and the person you care for could miss out on funds specifically allocated by government and community organisations which can help you juggle work and care

Finding a good work/life balance is the key to managing the financial pressures of caring

It is worth the time to find out what your entitlements are and claim them They can help ease the pressure of caring while working

Visit the Working Carers Gateway wwwworkingcarersorgau to find out more about money management

Isaac Smith Working Carers Gateway

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Who cares for the carers?We do. With your help.

Please consider making a gift in your Will to Carers Victoria. The decision you make today, will help us support the carers of tomorrow.

Please contact Anne Marie on 9396 9500 or via email to [email protected] for more information

All enquiries are confidential and obligation free

I have a lot on my mind...I’m a very private person...We have always dealt with problems within the family and I’m worried about others knowing I’m seeing a counsellor…

It can feel like a big step to seek help outside your family, but sometimes it is helpful to speak to someone outside the situation to help give you a new perspective

Counsellors take confidentiality and privacy very seriously Whatever you say is kept private and records are kept securely

Sometimes I get really stressed out and resentful...I’m worried if I speak to a counsellor they will judge me and think I’m not doing a good job...

Carer counsellors understand that it can be really hard being a carer

at times Sometimes you may be faced with big decisions where there are no easy answers and it’s hard to work out what to do Counselling is a way to explore your feelings and to help you work out some options in a non-judgemental setting

I have thought about going to see a

counsellor but things are going OK at the moment…

Being a carer can be like riding a roller coaster, there are up days and down days But you don’t have to wait until things get really bad Sometimes it helps to speak to a counsellor when things are going ok, to get a fresh perspective and put some strategies in place for the future

If you would like to know more about counselling contact the Carer Advisory Line on 1800 242 636 between 830 am - 430 pm, Monday to Friday to talk through any issues, or to access the Carer Counselling Program in your area

Jill Cameron Counsellor

I’d like to speak to a counsellor but…

A tribute to a special friend of carers Bud Tingwell was one of Australia’s most recognised and respected actors, involved in radio, film and television for nearly 70 years As a writer and director, he has worked on a number of Australian televi-sion shows and films - his contribu-tion to the entertainment industry was immeasurable

As a carer himself, looking after his wife Audrey, Bud knew the value of caring It was his personal caring experience that led Bud to Carers Victoria He spoke to carers all around Victoria, became actively involved in Carers Week

2006 and 2007 and as a Carers Australia Ambassador he recorded many messages of support for both radio and television He also took the star role in the play The Carer which was performed across Victoria, around Australia and also turned into a video

To our very dear friend Bud. You championed the cause for carers – and stole our hearts at the same time! Your warmth, generosity and commitment will be greatly missed by all here at Carers Victoria. We love you.

Bud Tingwell with CEO Maria Bohan

Carers Victoria has VHS video copies of The Carer to give away If you would like to receive one email your details to publications@carersvicorgau with “Video” in the subject line

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It never feels like a good time to think about making a Will, but some careful thinking and family communication will go a long way towards providing for the future needs of your children both with and without disability

How important is it to have a Will?If you do not have a Will when you die, your assets are distributed in the way that the law determines This set legal formula will not consider any special needs of the person with a disability

Making a Will lets you express what you want to happen to your assets and acknowledges your family and friends By having a Will you have peace of mind by establishing your wishes for the future care and support of your son or daughter with a disability

Can I use a kit?It is best not to ‘do-it-yourself’ See a lawyer to draw up a legally binding and valid Will It is worth finding a lawyer who has experience with families of people with a disability and is informed about setting up trusts, including Special Disability Trusts

Should I leave assets to my son or daughter?If your children are under 18, your Will can provide for their care, support and education You can use your Will to name the person(s) you wish to appoint as their guardian until they reach 18 years

You cannot appoint a guardian for a child over the age of 18, even if they have a disability Only the Victorian Civil and Administrative Tribunal (VCAT) can appoint a Guardian or Administrator for an adult Even if you have been formally appointed by VCAT to be the Guardian of your adult son or daughter, you can not pass this authority on to another person

Your son or daughter may not need to have a formally appointed Guardian or Administrator if they have family or friends who can assist them with the things you help with (eg decisions about where to live, managing money, etc) You can name them in your Will This has no legal standing but is an indication of your wishes

Should I set up a trust fund?If your son or daughter needs assistance to look after their assets, your Will can direct the establishment of a trust fund directly for their benefit A trust can be a good way to continue to look after the interests of your son or daughter after your death The most important decision is who you appoint as the trustee(s) You must be able to expect they will act in the best interests of your son or daughter You can appoint more than one person, eg one family member or friend and one professional trustee

But trusts are not the only option For example, you could leave a share of your estate to your son or daughter with the request that the executor(s) of the Will make an application to VCAT for the appointment

of an Administrator - if at the time of your death your son or daughter does not have the capacity to manage the share of the estate left to him/her

Think carefully about dividing your assets between your son or daughter with a disability and your other children Discuss your plans with your children and include them in decision making This may help everyone to have a common understanding of your wishes It also, may ensure that your children support your choices so that relationship breakdown and the stress and costs associated with contesting your Will can be avoided However, be aware that if your children or spouse think that you have not made proper provision in your Will, they can apply to the court to obtain a provision

If there is conflict in your family, contact the Family Relationship Service for Carers ( 03 9871 1800) for mediation and counselling in relation to future care of your son or daughter

Can my son or daughter make a Will?Any adult who does not have impaired decision making can make a Will This is called testamentary capacity An adult with a disability who does not have the capacity to understand the nature of Will making and it’s consequences, will not have the capacity to make a legally binding and valid Will

Thinking about making a Will can cause many mixed feelings If these feelings are a block to making plans for the future, you may find it helpful to call the Carer Counselling and Advisory Service (1800 242 636)

For further information contact Carers Victoria (1800 242 636) and ask for a copy of the publication Planning for the Future: people with a disability published by the Commonwealth Government

Anne MuldowneyEducation and Training Services

Will I or won’t I? Future planning for parents of children with a disability

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Welcome to our young carers page! We would love to get contributions from you. We’re after things like articles, cartoons, graphics, etc. You can send your comments and contributions to [email protected]

Tips for managing your money

Christian’s story

It’s never too early to start thinking about how to manage your money We’ve found a few tips to help you keep your budget is on the right track

• NEVER borrow money to pay your rent, water, electricity and gas

• Pay cash whenever you can

• If you need a credit card, ONE is enough If a bank offers you a second card,

say NO! A debit card is much safer

• Switch off your electrical appliances at the plug - you will save lots on your electricity bill

• Beware of interest free offers They have high penalties if you don’t pay on time

• Start with small, achievable saving goals that keep you motivated - and make sure to allow for unexpected expenses

• Say NO! If you can’t afford it - don’t buy it!

Source: Consumer Affairs Victoria & Harrison Community Services

My name is Christian and my brother’s name is Sammy-Joe Sammy-Joe has an illness and a disability, and sometimes I am the only one that understands him I don’t like people to tease him, or say things about him I try to protect him from that I have now become the big brother For only five years, I was the younger brother and I looked to my brother for helpSometimes I would wonder why he couldn’t talk, or do the things that others could do I remember seeing him in the hospital a lot of the time It upset me to see this and I couldn’t understand why he was always so sick When he turned 13, I remember my parents crying because they were told that Sammy-Joe could die I hated hearing that and I didn’t believe it either because I knew that Sammy-Joe was strong and tough - he sometimes wrestles me to the ground I know that Sammy-Joe can never do the things that I can, but sometimes I wish I could just stay home from school and look after him I take care

of him sometimes during the night when my parents are too tired, or don’t hear him wake up I know that I don’t have to - I feel that I have to My favourite thing to do is to play basketball It’s my favourite sport I like it when Sammy-Joe can watch me play outside in the dark Sometimes we play on the trampoline together at night Now it’s too hard because Sammy-Joe is like a four year old in his mind Sometimes he throws tantrums and sometimes he is too sick to do anything It’s been hard, but I like being with my family Marti who is my

Carer Support Worker has come to be my friend and he has made sure that I have had some things for me because sometimes I have missed out on things because my parents couldn’t afford them It’s been good having other people that understand my situation

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YC CORNERAmy (19 years) lives in Tooradin and cares for her brother Ben, who has Down’s Syndrome. She’s into novels, dancing, listening to music and swimming. what is the best thing about being a young carer? I love hanging out with my brother We do all sorts of fun things together We have a great relationship, better than if I wasn’t his carer what do you find challenging? It’s hard to try to juggle caring while studying, catching up with friends and working what do you do to chillax? I love swimming laps I also love reading I always have a book with me It takes you to another world where you can escape. your hot tip for other young carers Take time to step out and take a breath Remember your wants and needs It’s okay to be selfish every once in a while

Movie review: Slumdog MillionaireSlumdog Millionaire is rated MA15+, so, this is a review for you older young carers.

After Slumdog Millionaire cleaned up at the Oscars I thought I would check out what all the fuss was about I wasn’t disappointed

When 18 year old Jamal reaches the final question of India’s Who Wants to be a Millionaire, the authorities can’t believe it How could an uneducated, 18 year old from the slums know the answers to all those questions? Believing that Jamal is cheating, he is charged with fraud and interrogated by the Indian police

Explaining how he knew all the answers, Jamal begins to tell the story of his life This story is a look at the harsh realities of life for children who grow up in extreme poverty, so if you’re after a lighthearted, feel-good film, save your money and go see something else If, however, you’re after something with a bit more depth than the average Hollywood blockbuster, I highly recommend that you buy a ticket and see what all the fuss is about Jason Carter Young Carer Mentoring Project Worker

Special scholarship helps young carers across Victoria106 young carers across Victoria recently received the WCF Thomas Charitable Trust / Rotary Young Carer Scholarship

Up to $700 per young carer was given to help with school expenses, and for things like recreational and extra curricular activities

For a lot of young carers the scholarship helps them to get things their family wouldn’t be able to afford otherwise

One young carer said, “I would like to sincerely thank Rotary and Carers Victoria for the Scholarship The grant will make my travel to school more enjoyable for me and be one less thing my parents have to worry about “

If you missed out on scholarhip applications this year - don’t worry! Plans are being made to continue to make these scholarships available to more and more young carers

Special thanks goes to the supporters of the scholarship - the WCF Thomas Charitable Trust, the Rotary Club of Mt Eliza, Portland House Foundation and The Lord Mayor’s Charitable Fund

If would like to know more, contact Judith Mulcahy at Carers Victoria (9396 9500 or judithm@carersvicorgau)

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Carers in Victoria Winter 2009

12

Erika and George came to Australia in 1969 and live in North Dandenong. Erika has been caring for George since 2002, when he was diagnosed with Motor Neurone Disease. They receive support from an EACH package through Southern Cross Care, The Motor Neurone Association, South East Palliative Care and Bunurong Respite Care to enable George to remain living at home with Erika.

ErikaGeorge was doing his National Service as a cook in the Sergeants’ Mess with the British Army and was stationed in Germany in 1954 He met my mother, who was working in the same kitchen On Christmas Eve 1955, George was invited to the family home where he first met me as a 20 year old German girl He returned to England only a week later with me agreeing to write to himOur relationship as pen friends continued for over four years and we married in 1960 in Norwich, England We emigrated to Australia in 1969 with our young son and daughter and made our new life in North Dandenong

George was diagnosed with Motor Neurone Disease (MND) in 2002 His care needs have gradually increased over the time and he now requires full assistance with all personal care needs George spends the day in an electric wheelchair and requires assistance in and out of bed Through funding from the Motor Nurone Disease Association, the physical demands of caring life are easier for me Before, I was lifting George on my own many times every day

One of my big challenges has been how to make George comfortable as his illness progresses I have constantly studied and informed myself on what I believed to be more appropriate treatment for George I was not prepared to follow the doctor’s advice to use morphine for George’s pain control, so I studied to find natural solutions that I believed were better for George It has been a hard road to tread, but I firmly believe that my interventions with George’s treatment - the natural therapies, vitamims, minerals and diet has helped to prolong and certainly improve his quality of life

Barry from South East Palliative Care told us about a one off $2,000 grant that was available via the MND Association to help improve the lifestyle of people with MND I thought that we could use the money to build a gazebo in the back garden Since losing the capacity to operate his wheelchair, George has been unable to enjoy the fresh air and

the garden

I tried contacting several tradesmen to build the gazebo, but to get what I had in mind, the prices ranged from $4,000 to $8,500

But I perservered and got a quote for under $2,000 The gazebo has now been completed and with the leftover money the builder made four planter boxes to decorate the area The power is also connected so that George can use his respirator and listen to music and enjoy the garden while I work in my vegetable garden nearby

Before the gazebo was built, George spent most of the day watching TV and listening to classical music Now, the gazebo brighten’s his day and has made a big difference to his quality of life

It can be so easy to give up when faced with all the demands and challenges of caring for someone with complex care needs, but I think it’s important to keep being resourceful and perserving Never give up!

GeorgeErika and I have been together for 49 years and in all that time I’ve really learned to trust her She always wants what’s best for me even though, at times, I disagree - especially over food!

I don’t take any medications other than one tablet at night to curb the saliva during my sleep Erika always wants to know the side effects of any medication before she lets me take it We are both against the use of morphine unless its an emergency

Erika has had to undertake everything to do with the maintenence of the house The new gazebo is a godsend - it went up surprisingly quick! I look forward to using it in the warmer months I’d really like to thank all the people who made it possible

reflections of you and mereflections of you and me

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The Department of Veterans’ Affairs, as well as other Australian government departments and agencies, organisations and private businesses, must apply principles of the Commonwealth Privacy Act 1988 (the Privacy Act) to personal information collected about you

Personal information is defined as information or opinions that can identify a living person The information does not need to be true or factual, or even name the person, but if a person can be identified, the information is classed as personal information

What is the Privacy Act?The Privacy Act regulates how personal information is used and collected It also ensures that Tax File Numbers are collected and used only for taxation, assistance and superannuation related purposes

DVA can only collect personal information for either a lawful purpose directly related to the functions of the department, or if the collection is necessary for or directly related to that purpose

How does the Privacy Act protect personal information?

Under the Privacy Act, the Information Privacy Principles must be complied with These principles govern:

• collection of personal information

• storage and security of personal information

• your access to your records

• record accuracy• use of personal information and its

release to third parties

When DVA asks for personal information, we should tell you:• why we are collecting the

information• whether we have a legal authority

to collect the information• to whom we usually give that type

of information

This information is usually detailed in the form that requests the personal information

DVA must take care to check personal information is accurate, up to date and complete before using it Personal information can only be used for the purpose for which it was obtained

When does DVA use or disclose personal information?The Privacy Act outlines the circumstances where DVA can use or disclose personal information These circumstances are:

• you have been told of the use or disclosure, or you are otherwise likely to know the kind of use or disclosure is commonly made

• you have consented to your personal information being released

• the release is necessary to protect against a serious and imminent threat to a person’s life or health

• it is required or authorised by law• it is reasonably necessary to

enforce the criminal law or a law imposing a fine, or to protect public revenue

Getting access to personal information held about youThe Privacy Act states that you should have access to personal information that government holds about you

If you want a family member or a representative from an ex-service organisation to represent you in any of your dealings with DVA, you must provide your permission either in writing or by being present with that person when they contact us so that verbal approval may be given

If you want to know more, contact the Department of Veterans’ Affairs (133 254 or 1800 555 254 for regional callers)

DVA feature: Privacy and your personal information

Home Wise is a new Department of Human Services grant program to help low income Victorians replace fridges and washing machines

Who is eligible?• You must have a pensioner concession or

health care card

• You must have an old washing machine or fridge that has broken down within the last

12 months or is not working properly

• You must still have the old item at home

• You must not have received an appliance or capital grant in the past 5 years

• You must show that you don’t have enough savings to buy a new one

To find out if you are eligible contact Department of Human Services’ Concessions Unit (1800 658 521)

Need a new fridge or washing machine?

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Carers in Victoria Winter 2009

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You are invited to be part of a new project that evaluates home-based programs for care-givers and their spouse who has dementia. The study is being conducted by the University of Queensland and the University of Melbourne. The aim of the project is to evaluate two different programs that can be conducted at home. Both approaches have been found to be useful for people who have dementia and the purpose of the project is to determine if one is better than the other.

Participation in the study is free and you are likely to benefit from either program. But because this project is for research, agreeing to participate means being willing to try out either program – music or reading.

We will be evaluating both programs, so we will ask you to fill out some forms before and after the program and again six months later. If you would like to be part of this program, please contact Rachel

Shelley: Email: [email protected] Phone: 0420-839-254, or Dr Denise Grocke: Email [email protected] Ph (03) 8344-5259

Home-based programs for spousal carers and people witH dementia

Seniors Rights Victoria community legal centre is now supported by four specialist outreach legal clinics, together called the Seniors Rights Legal Clinic (SRLC) which have opened around suburban Melbourne Seniors Rights Victoria commenced operation in June 2008 from its central Melbourne office and provides a range of services including a telephone helpline, referrals, legal advice, advocacy, community and professional education Its mission is to empower older Victorians so

they can take steps to live in safety, with dignity and independence

The aim of the new SRLC is to provide free legal services to older Victorians who are not otherwise able to access legal services There are currently three SRLCs operating across metropolitan Melbourne located in Caulfield, Footscray and Niddrie, with a fourth commencing in Bundoora in early May The clinics are co-located with existing services such as hospitals and community health centres to ensure

accessibility for the clients Each clinic runs fortnightly with three 45 minute appointments available each clinic day

The SRLC is able to assist clients with a range of legal issues including Powers of Attorney, simple Wills, financial matters, family arrangements, retirement, housing and accommodation, violence/abuse and grandparenting issues

For further information regarding the legal clinics or to find out how to make an appointment please call 8636 4416.

Seniors rights legal centres

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When money’s tight most households

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2 Don’t forget the frozen option Modern techniques mean that frozen vegetables retain their nutritional value, texture and flavour, and can be cheaper than fresh

4 Time your visit to the supermarket to coincide with the time of day when bakery items and meats are marked down Even if you’re not going to use them that day, most of these foods can be frozen for later use

5 Don’t forget the humble legume! Beans and lentils are a

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6 Planning is key Decide on your week’s menu before you visit the supermarket and you’ll find it easier to stick to your budget

Grocery budget busters

This article first appeared in the Autumn 2009 edition of Lifeplus and is provided courtesy of Australian Unity. © Australian Unity 2009

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Book review My Sister’s Keeper by Jodie Picoult

The back cover of My Sister’s Keeper asks if it is morally correct to do whatever it takes to save a child’s life…even if it means infringing on the rights of others - and what happens when emotion catches up to scientific advances?

Jodi Picoult answers these questions in a moving and compelling story about two sisters – Kate, who is chronically ill and Anna, who was conceived solely to help save her sisters life

My Sister’s Keeper tackles the issue of whether or not a child should have the final say in the decision of donating an organ to an extremely ill sibling Anna has previously undergone many medical procedures in order to give her sister the hope of recovery However when the time comes for one last chance effort, a major surgery Anna does not agree with and ends up going to court to medically emancipate herself at the age of 14 Her actions seemingly sentence her sister to death The story takes you through the emotional and mental rollercoaster of Anna’s story as well as each

person that comes into contact with her and the battles that each of them face These are battles of the heart, the head, the soul and all the grey areas in between I am yet to come across a story that so beautifully depicts the immense emotions that carers must feel

This book from beginning to end was captivating, insightful and so full of love It demonstrates all the issues that must be considered when one person is responsible for, or has come to rely on someone else for both medical and emotional support It is a complex and beautiful story that any reader will carry with them for many years to come Review by Amy H.

Beautiful, heart-wrenching, insightful

In response to rising supermarket costs, Cynthia Mayne developed the cookbook, How to Feed Your Family for $75 a Week The book has creative ways to make your shopping dollar stretch and focuses on enhancing and strengthening family bonds through mealtimes We asked Cynthia a few questions about herself and the cookbook

Can you tell us a bit about yourself?I ran a healing foundationwe worked with diet as preventative medicine People would come to us saying they had received an unexpected bill and all they had left was $40 or $50 for the week - what could they buy? So, we’d take them through some of the trick of good nutrition I promised my customers I would put everything in book form, and that was the start of the Feed Your Family series We also have a book on household budgeting, we are releasing a singles book later this year and a bumper Christmas one

What do you hope people will get out of the book? As much as we thoroughly enjoyed the work, we lived on an extremely low income We had two children then We had a wonderful life, but money was always a struggle Life is about so much more than struggling, and through careful planning it’s possible to have quality of living regardless of income I sincerely hope the books help people struggling with either lack of money or lack of time to plan Both put enormous stress

of families and life is certainly a lot more enjoyable without stress

Cynthia was kind enough to give us some free copies of the cookbook. If you would like to receive a copy of How to feed your family for $75 a week, email your details to [email protected] with “Cookbook” in the subject line.

How to feed your family for $75 a week

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Carers in Victoria Winter 2009

16

Rhythm of life a carer story by Kerry McDougall

The telephone rang about two weeks ago When the conversation ended, Peter was very animated Kerry, my shoulder surgery is scheduled to happen in eight to ten weeks Oh, that’s wonderful news, I said We were both very excited Peter’s shoulder is damaged and dislocated as a result of very severe rheumatoid arthritis It began to dawn on me the impact the surgery and lengthy rehabilitation will have on our lives Peter lives with constant pain I worried about the effect this surgery is going to have on his already compromised quality of life

Within our garden we have created a private outdoor area, a haven

The conifers, potostums, fruit trees and shrubs we planted when we moved in ten years ago have been nurtured and grown to be healthy and strong The aboveground beds have prospered and provide both colour and food The purple and red flowering salvia grows like a wave undulating along the beds Our daughter’s remembrance stone etched by hand with her name, Leah Horne, and given to us by landscape gardeners who didn’t know her, but valued her existence I was sitting outside under the gazebo, listening to the water feature gently bubbling away, the birds singing Peter came out to join me, we both sat there in quiet contemplation, then Peter said, it’s a pity we couldn’t get those raised beds and the paving done Last year I approached a funding agency to see if they would fund this type of request They initially agreed, but for one reason or another it didn’t proceed I did contact them again and was told, we don’t do that

Peter went off to potter around in the garden He spends a lot of time at home and can often be found outside in the garden or sitting under the gazebo reading and painting Painting is Peter’s first love His art has sustained him through some of the most difficult times in his life My mind went back to the impending surgery with dread, but with it came a determination to secure the funding Now is the time to act, I thought as made the call The intake worker said no, we can only fund respite The government has tightened the way the funding can be used When I questioned the lack of flexibility, she said she would follow it up with her supervisor and get back to me That’s the end of that I thought to myself

Two days later I was contacted by the complex needs coordinator She said they would provide the funding based on Peter’s individual circumstances I was relieved Good, I thought to myself, something positive for Peter I arrived home after a very busy day at work and told Peter the good news He was absorbed in his painting but said, yeah that’s great Would you like a glass of red, Peter? Okay, he said as I opened a bottle and headed outside with a couple of glasses

I remembered when Mal Brough, MP was invited to be a guest speaker for my work’s AGM last year He was the Federal Minister for aged and community services, including disability funding Once he agreed to speak other key representatives from the political parties

agreed to participate in the pre-election forum On the day the politicians didn’t offer any new funding for the disability sector - the audience of about one hundred and fifty was beginning to become disgruntled A carer in the audience talked about her family situation and asked Mal Brough about the lack of support for her family Mal Brough’s initial response was, you choose to care for your family members Then as he tried to clarify his comment, people in the audience began yelling out I

remember thinking that he showed a complete lack of awareness about the issues for carers

Peter joined me under the gazebo we sat talking about the garden, the location of the raised beds and counting pavers, feeling positive My thoughts went back to Leah and her love of the outdoors I can see her now - sitting in her wheelchair with us in our private haven, alert, her blue eyes taking everything in I remember her strong spirit, her strength as she fought to live These experiences are never far from my thoughts It is a challenge at times to move on with my life, but Leah gave me the strength to become the person I am today Peter and I are bound by our experiences, we have always been there for each other, enmeshed until eternity Sitting in our private haven it is quiet; all I can hear is the water feature slowly bubbling away as the birds sing their final song for the day I enjoy the moment looking out at the garden as the sun goes down, lost in my own thoughts I hear footsteps approaching and look up Olly is home Hi mum, what’s for dinner? He says

Page 17: Carers in Victoria · Carers in Victoria Winter 2009 2 Carers in Victoria The quarterly newsletter of Carers Victoria ISSN 1445 ... my sister’s keeper 16 This year our Mingle events

17Yes! I'd like to become a member of Carers VictoriaI support the purposes of Carers Victoria

and hereby apply for membership

Carers Victoria is a not-for-profit organisation. Donations are gratefully received. (Donations of $2 or more are tax deductible)

Signature Date

Title First Name

Surname DOB

Organisation /Carer Support Group (if applicable)

Address

Postcode

Phone (H) Phone (W)

Mobile

Email

Select Membership Status

Carer $ FREE

Former Carer $ FREE

Carer Support Group (CSG) $ FREE

Interested Person ($20) $

Organisation/Corporate $100 $

Donation $

I would like to pay by: $ TOTAL

Cheque: Payable to Carers Association Victoria Credit card: Mastercard or Visa only

Name on card

Card number

Expiry

Signature If you speak a language other than English, which language do you speak?

Do you require an interpreter? Y N

Are you an Australian Defence Force (ADF) member or ex-service person? Y N

Would you like information about taking an active role in advocating for carers? Y N

Can we contact you occasionally for research purposes (eg: questionnaires) if relevant? Y N

In addition to the quarterly newsletter, would you like to receive regular news from us via email? Y N

TAX INVOICEABN 12533636427

Raise your voice Join Carers Victoria

today

Carers Victoria is the statewide voice for family carers, representing and providing support for carers in the community.

Carers Victoria leads change

and action for carers so that:

• Carers enjoy improved health, wellbeing, resilience and financial security

• Caring is recognised as a shared responsibility of family, community, business and government

We will achieve this through our:

• carer advocacy and representation

• research and policy development

• carer services and programs

Membership is FREE for carers /former carers and carer support

groups

It’s easy to join … just complete this form and mail to: Carers Victoria, PO Box 2204, Footscray 3011.

Member benefitsCarer and former carer members receive:

• Carer s in Victoria newsletter (quarterly)

• access to Carers Victoria's library (with free mail out and reply paid envelope for return)

• invitations to member events and special events

• member prize draws• member discounts

Carer Support Group and Organisation members Ask us about additional benefits for Carer Support Group and Organisation members.

June 2009 OFFICE USE ONLY

Please complete relevant sections overleaf…NEWSLETTER

JUNE 2009

Page 18: Carers in Victoria · Carers in Victoria Winter 2009 2 Carers in Victoria The quarterly newsletter of Carers Victoria ISSN 1445 ... my sister’s keeper 16 This year our Mingle events

Carers in Victoria Winter 2009

18

PER

SO

N 1

PER

SO

N 2

PER

SO

N 3

ABOUT THE PERSON/S YOU CARE FOR:

Name:

DOB:

This person is your (e.g. Son, Wife):

Where does this person live? with you alone with another person in a hostel

in a nursing home in a residential unit other

Is this person an Australian Defence Force (ADF) member or ex-service person? Y N

Primary condition/diagnosis:

Name:

DOB:

This person is your (e.g. Son, Wife):

Where does this person live? with you alone with another person in a hostel

in a nursing home in a residential unit other

Is this person an Australian Defence Force (ADF) member or ex-service person? Y N

Primary condition/diagnosis:

Name: DOB:

This person is your (e.g. Son, Wife):

Where does this person live? with you alone with another person in a hostel

in a nursing home in a residential unit other

Is this person an Australian Defence Force (ADF) member or ex-service person? Y N

Primary condition/diagnosis:

Please send me information on:

Carer Counselling Program Workshops for carers and carer support groups

Carers Victoria’s library Education and training for service providers

Making a bequest in my Will to Carers Victoria

I have already included Carers Victoria in my Will

Thank you for joining as a member of Carers Victoria and supporting our work.

You will receive your membership card shortly. Don’t hesitate to contact us in the interim if you have any questions or concerns.

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crossword

Across1) Legal or moral entitlement [5]4) Quick and energetic [5]6) Ornamental tree [6]8) Accountable [11]11) Additional [5]15) Folded paper art [7]16) Not now [5]17) Striped animal [5]18) Form of musical theatre [5]

Down1) Umpire or judge [7]2) Twelve dozen [5]3) No-no [5]4) Type of Buddhism [3]5) Alternative solution [4,1]7) Regular subsistence payment [7]9) For each [3]10) Set aside for rainy days [7]12) Name [5]13) Major heart artery [5]14) Egyptian city [5]16) Fifth sign of the zodiac [3]

1

8

11

16

18

2

12

9

3

6

13

15

17

4

10

5

14

7

Across Clues

1) Legal or moral entitlement [5]

4) Quick and energetic [5]

6) Ornamental tree [6]

8) Accountable [11]

11) Additional [5]

15) Folded paper art [7]

16) Not now [5]

17) Striped animal [5]

18) A form of musical theatre [5]

Down Clues

1) Umpire or judge [7]

2) Twelve dozen [5]

3) No-no [5]

4) A Type of Buddhism [3]

5) Alternative solution [5]

7) Regular subsistance payment [7]

9) For each [3]

10) Set aside for rainy days [7]

12) Name [5]

13) Major heart artery [5]

14) Egyptian city [5]

16) Fifth sign of the zodiac [3]

9-15Men’s Health Weekwwwmenshealthaustralianet

14-20 Refugee Weekwwwrefugeecouncilorgau

26SIDS Red Nose Daywwwrednosedaycomau

june july5-12NAIDOC Weekwwwnaidocorgau 12-18Diabetes Weekwwwdiabetesaustraliacomau 24Lifeline’s Stress Down Daywwwstressdownorgau

august2-8Cerebral Palsy Awareness Weekwwwtccpcomau 11-17 Anxiety Disorders Weekwwwarcviccomau

12Parkinsons Awareness Weekwwwparkinsonsvicorgau

calendar of community awareness and fundraising events

laughing matters

by Patricia Cameron-Hill & Shayne Yates

In Queensland I owned a large property with a dam in one of the lower paddocks, where I planted mango and avocado trees The dam had been fixed up for swimming and I also had some picnic tables placed in the shade of the fruit trees

One evening I decided to go down to the dam to look it over, as I hadn’t been there for a while I grabbed a ten litre bucket to bring back some fruit As I neared the dam, I heard voices shouting and laughing with glee I saw it was a bunch of young women skinny-dipping in my dam I made the women aware of my presence and they all went to the deep end One of the women shouted to me, ‘We’re not coming out until you leave!’ I frowned, ‘I didn’t come down here to watch you ladies swim naked’

Holding the bucket up, ‘I’m here to feed the crocodile’

Moral: Old men may walk slow, but they can still think fast

member prize draw

Congratulations to Glenis F of Mount Eliza, who has won a two

night stay at Tessenna Villa in Yarra Glen

(to be taken within 12 months)

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The business END...We have been very busy just getting on with the business of supporting carers – but we know that many of our members are interested in knowing more about the work of Carers VictoriaSo here’s a snapshot of just some of the things we have been up to so far this year …

During this time, we also provided direct support to carers by:

Extending our reach into new cultural communities by translating carer fact sheets into 17 different languages

Providing 1664 counselling sessions for carers across Victoria

Informing over 2,000 carers about services and supports through the Carer Advisory Line

Reaching out to hidden carers and connecting 403 new carers from Melbourne’s west into respite services

Inviting, engaging, connecting – new morning tea program to support carers of people with a mental illness in the west

Empowering 2582 carers with new skills learned through the delivery of 155 workshops

Expanding our Young Carer Scholarship Program with awards to 106 young carers (that’s double the number from 2008!)

‘Mingling’ with almost 500 members across Victoria (see photos below)

Between January and May 2009, we represented the needs and concerns of family carers in Victoria by:

Demanding ‘Real change’ for carers and presenting our pre-budget bid to key government personnel and community partners

Advocating for the rights of working carers by undertaking a consultation with carers about substitute care, participating and advising on three separate State and National programs and projects, and influencing national legislation

Welcoming the Senate Standing Committee on Community Affairs report on Special Disability Trusts whose recommendations are consistent with the submission we developed

Collaborating with Deakin University, Uniting Care Community Options, and others on the Consumer Directed Care Project

Making a total of 15 major submissions to government, representing carers on 14 program advisory committees or program reviews and presenting at 4 key government hearings

Carers at Mingle in Ballarat enjoying the entertainment.

Look in our Spring edition for more about the 2009 Mingles.