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22 March 2012

How do you think advocacy can better serve Carers and the Carers community?

For more information on Carers Australia advocacy, please click here.

Discussion Topic: Advocacy 29 comments

 
 

26 March 2012

says:

Sometimes I think that the people who make the policy decisions that affect carers have no idea how much carers do and how hard it can be. Advocacy is a fantastic way to let politicians know what carers are dealing with in the real world.

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19 August 2013

MakHal replied:

Advocacy to me represents the actions taken and issues highlighted to change the 'how it is' into 'how it should be'.

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16 September 2013

Gramps replied:

I have been a full time Carer since 2002 and the Carer Payment and Allowance is insufficient to cover cost of day to day expenses. Why does the Advocacy have funding success with increasing the services for Carers but not able to get Carer financial payments increased?

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5 November 2013

Amy334 replied:

I agree. I have been a carer for my parents one just died from thermal illness. Now one dementia.manic depression. So almost almost my whole life. You are a more then a family member but a number of job roles. Being on the carer pension is less then that many job descriptions. Only a career knows the job loads.

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28 November 2013

YLYC replied:

Are any of the individuals that you care for intitled to a disbility funding package? If so, you can access a 'Your Life Your Choice' coordinator to help you manage the funding package and employ the support the individual needs and wants.

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23 January 2014

Vinsent replied:

I am a care worker and at times we find people that look down on our professio not knowing how hard it is mostly being in a residential feild. Some people quite being care worker but does who do not show that they have passion for the feild we need some respect as care workers...

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23 January 2014

Vinsent replied:

I think this site should be made visible to thoes who have the powers to change the way we a treated like when i take a child to hospital doctors look down on us like we do not have a life...

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24 April 2012

DonnaMichele says:

Without advocacy, we would be even more invisible.

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24 September 2012

ASDGDD2005 says:

I really do agree with Paul - the general population and policy makers have no
idea what is involved in the role of a
carer. Respite is crucial - support services linking carers to support systems is essential - the responsibility & isolation is incredibly taxing on the individual and that I think is not recognized.

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3 October 2012

Peta Cass says:

I am currently a MyTime facilitator which only includes support for parents/carers of kids from 0-16. I would love somebody to start a program like this for carers, caring for a person of any age. Respite is crucial and i am glad that I have found MyTime, as I am a carer myself...Good luck to you all. x

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9 October 2012

Judith Collins says:

EYESIGHT
I am the carer of my 87yr old mother-in-law.
I am seeking an eye surgeon/speciliast who bulk bills. Sydney or south Sydney area.
She is a single pensioner. Insulin dependant. Todate her eye injections cost one whole pension. thus, leaving her with very little on which to live, let alone pay her bills. Fortunately she lives with me. I too am on a pension. I care for my husband (her son) whohas kidney disease.

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9 October 2012

Judith Collins replied:

Advocacy should start with ensuring that the needs of carers and for whom they care are serviced by supportive services. Try as I may my darling mother-in-law aged 87 yrs old has been without treatment for five months because I cannot find a eye speciliast who bulks bills and also because she cannot travel to the Sydney eye hospital.

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26 October 2012

mifren replied:

As it seems the Sydney Eye Hospital is your closest service, what does your mother in law's GP, local Dr have to say? Clearly s/he needs to become much more actively involved in helping you by preparing, co-ordinating another Care Plan?

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9 October 2012

margaret42 says:

Caring for my husband with cancer, which has involved occasional hospital visits, I've been frustrated by not being present when specialists see him at the hospital because there's no specific time they visit. He tries to pass on the information, but when on high medication this shouldn't be expected of him. When he's sent home on a Long Weekend to be cared for by me and I'm not fully informed of what's been happening or what the present needs are, especially what any changes of medication are for, its really stressful. I don't think enough attention is given to the stress caused by this in when the patient-carer relationship is still a husband-wife relationship - but I don't have an answer.

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26 October 2012

mifren replied:

My on-going answer is to do as I am and that is to actively advocate for an independently funded Hospital Carers' Advocate because I've found, endured the RDH, Royal Darwin Hospital Patient Advocate to be an almost waste of my, our time. Clearly you need much more support and you need as you have, to capture in writing your thoughts, feelings, ideas in writing then copy, redraft them into something you could Email or otherwise send to your local State MP or Territory MLA, Health & Shadow Ministers? What is your State or Territory Carers doing to actively help you so far address, redress your experiences above?

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16 October 2012

hoolibob says:

It is useless having any advocacy for carers when it is being made impossible for people to quaify as a carer. I am currently the carer for an elderly red parking pass disabled senior 70yo female. My mother suffers both rheumatoid & osteo arthritis, asthma & has blood pressure issues. HACC’s have determined that it is unsafe for her to bathe herself and assist with respite for me once day a week. I have applied for both Centrelink Allowance and Centrelink Payment because on a good week based over a twelve (12) week period I am in attendance at my mothers house for 27 hours a week assisting with personal care only. I can not acknowledge the at least 5 hours housework that includes picking up and disposing of dropped tissues, taking out filled bins, washing dishes, disinfecting floors because general cleaning is allowed to be included. I can not acknowledge as part of my 27 hours watching educational shows 5hrs per week with my mother like Letters & Numbers (selected because Alzheimer’s recommend word & number puzzles) because you are not to include as part of personal care watching television. I can not include taking and accompanying my mother shopping because she is unable to drive long distances and her parking pass will tell you walk very far.5 hours per week. 42 hrs per week all up on a good week. I can not include the fact I have assisted in converting mum’s bath to a shower because despite the fact there is supposed to be a grant to qualify you have to work out who covers you this took about 6weeks get it acknowledged to was needed this was done and then sit and wait for 6months for someone to come out and say what’s needed to be done then go from there.

Despite legislation that states that if I am unable to work due to the constraints of my caring abilities I have only been approved for Carer’s Allowance. I requested a review of the refusal of my Carers Payment now about 6 weeks ago. I note that two phone calls were made to me from Centrelink Toowoomba office to try and talk me out of this request. During the 2nd phone call I was told I basically had no chance of success at review because Centrelink were using as the basis of their approval process an internal social security memo from I think 1990’s that set the minimum criteria of qualification 58 hours personal care time a week and that care had to be provided 7 days a week. I pointed out to the 2nd caller that this could not be the case because the social security website allowed carers I think 66 days off a year. I pointed out to this 2nd officer (that was in possession of a letter detailing every single hour of my average days) that as both my mother and I reside in a minor remote town the chance of me being able to find an employer willing to pay me 4 hours the minimum for casuals for my hopefully free 2hours a day were zero and I demanded my right to have my application reviewed. I was advised that this would take about 4weeks. It is now about 6 weeks. During my phone call today to find out how my revue is progressing is met with a response that Human Resources are no longer bound to any time frame for revues and I am required to get another doctors report. The last doctor ticked all the boxes correctly and stated my mothers condition would not improve and stated as my mum has had her disabled parking pass for I think over 20 years I’m guessing he’s right. Amongst that bundle of forms was my mother giving permission for Centrelink to access any further information from the doctors or any other source to validate the claim.

Currently I am performing care to my mother 45hours and because I am on the newstart system expected to maintain 25hours voluntary work and 3hrs small business work 73 hours a week I keep hearing about the proposed National Disability scheme as an almost 50year being run into the ground physically and emotionally I hope its great because I will be using it a lot quicker than I thought I would need to thanks to Human Services.

I have received an invitation from Allora HACCs for their carers lunch for carers week. Will I be able to go with my schedule what do you think?

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26 October 2012

mifren replied:

I think that you could, should seriously also share the above with your Australian Federal MP & Responsible Centrelink Minister & Shadow in writing and more, ring them. Clearly they, your democratically elected Representatives need to be made much more aware of just what you're currently suffering from as their ignorance or lack of awareness clearly isn't going to be easily able to help you?

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29 May 2013

Dianne replied:

You sound wonderful given the amount of neglect in the system and hard yards you are putting in. I am hoping you can find another link maybe a social / friend / carer for the carer ideology to participate and help you to get to where you need to go. I found sometimes being so busy caring we cant stop to ask for help. As you realise there is no easy fix with centrlink only perseverance hopefully you can reach out for that someone who can ever so small assist you. My heart is with you.

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16 October 2012

Roses says:

Its hard to get my head around having to look after my partner with ptsd and major depression from a service in Afghanistant whilst juggling work commitments. I have been informed by a number of sources I will need to educate my colleagues as no one i know in the workplace is dealing with this. I joined the carers/parents network and was shocked that there was only one more carer there. How many others are in departments not speaking up about there role. Advocacy is so important not just to politicians but in the workplace to create more understanding as i am slowly realising.

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26 October 2012

mifren replied:

I agree, what would you like to see happen next?

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25 October 2012

DAC says:

Advocacy works well if anyone can actually do anything about the issues it seems sometimes we are so caught up in Policy and Legislation that there is little room for the uniqueness of every situation
I am a single grandparent with Permanent Care of my granddaughter who is 8 I also care for my son who has epilepsy and other mental health issues
I used to care for my grandmother until a year ago when she evicted us as I would not support her lies about my father she was helped by an advocacy centre her with that and despite the fact that it could of all been resolved with a phone call to her GP they refused and took it too court and she lost When I left I told her to evict me legally as she had been part of my granddaughters Permanent Care Order and told DHS that the house was willed to me and that we would have a home for life all in court documents she then tried to take out a Protection Order on me which I contested I managed to find accomodation with the help of Red Cross and now am in the Process of Appealing a housing decision which says that I am medium needs not high needs which I need to stay in the accomodation that I am presently in
or I am facing eviction on the 3rd of December My granddaughters order is in Victoria and as there is no comparable order here in Qld I cant access the financial or other services available here I left my job as a caseworker in Disabilities to look after my grandmother and am the same as a lot of others it is difficult to get back into paid work after a time away I am currently studying and that can be difficult also with all of the other pressures that seem to arise for all carers We save the government a lot of money with caring roles and sometimes it appears that we are also punished for that with Policies that simply dont make sense at all If people didnt help with caring how much is the real cost of all of this Amazes me how we all cope really but we do

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26 October 2012

mifren replied:

Clearly yours is a complex set of circumstances requiring yet another sophisticated response. What would you like to see happen next?

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26 October 2012

mifren says:

I'd like help in getting independent funding for a RDH, Royal Darwin Hospital Carers' Advocate. What do you think I could, should do to help facilitate such an outcome?

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23 April 2013

CathJC says:

My issue is that post-caring, carers seem to be forgotten. I suspect that others like myself will find themselves isolated, deskilled, middle-aged and wondering what to do with themselves, how to get into the workforce and earn a suitable, dignified living commensurate with abilities etc. No support is forthcoming from the authorities other than the 3 months of financial support, after which you become another dole recipient, and treated without much respect. There was no direction to any counselling services, no place to discuss the future or any help in establishing a future, no help in post-death financial advice. This is also a big need, and I am still not aware of any support specifically available for this unique set of circumstances.

I decided very early on to undertake further tertiary studies through a massive restructuring of my finances and relocation. I am self-funded, but live on the poverty line. I now use the counselling services (free) of the particular uni I attend, but 18 months after my ex-partner's death I teeter on the brink much of the time. It would have been better if competent counselling had been offered immediately after his demise.

I think that post-caring requires a massive amount of attention—often the carer's prime social purpose in life has gone, and they face equally difficult adjustment issues in all aspects of life. I will also make this comment on the advocacy thread ...

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20 September 2013

tismeusee says:

I am 53 currently a carer of 2 family members. I have my own health issues now bad back etc due to moving house . I fear for the future no retirement no nothing. don't qualify for most things eg transport help cos Im a carer not disabled or elderly. We need someone to advocate that has some clout eg a lawyer. how did the aborigines get where they are now ?? trouble is carers as a group are easier to ignore cos we are harder to see. Ive had my funded time with a psychologist im on anti depressants.i get 5 sessions a year with a physio ( not enuf) shine lawyers wont help /ACTU wont help carers. Ive thought of organising a carers strike where we take all those we care for into our local MPs office and stand back. if they think its so cheap n easy to care let them do it.

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10 October 2014

hoolibob replied:

Right on! Every spare moment I go on ABC & other websites and bring carers issues to the front & will keep doing it till the day I die. If they pull the funding from the ABC will do it on other media websites. Suggest you do the same. With an ageing population looming there are more of us out there & we've all had enough.

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29 April 2014

hoolibob says:

When you look at the number of comments on this page you very quickly
realise how little time carers have free. All other organisation fight for lawful rights why has the only law that has been put forward been for respect. Shove the respect (Carers Recognition Act 2010) I want the money! When I'm doing 73+ now hours I don't want to come home to have to mow and tend my own garden I want to use the extra $ to pay for same to be done. Want to have real advocacy power and feed back from carers? Have the registration fee set at a price carers can afford

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2 October 2014

Mon says:

I do not know much about advocacy. I have been a carer for my daughter for 21 years. I now am faced with having to become a carer for my mother as well. I am tired and stressed all the time. My husband and I cannot afford a home because we are unable to work the hours that regular people work due to family responsibilities. Now I am facing the possibility that I may have to give up work to look after two people. That then means that we will be living in poverty. We struggle to get by with the income that we have now. I was unable to work at all for the first 18 years of daughters life. We had nothing. I finally get the opportunity to get back to work on a casual basis and now, yet again we may be forced to live with high rents and low income. I see no hope that we will ever be able to get ahead in life. I only see a life of surviving, getting by, with little hope for anything but drama and hassles both physically and emotionally. My husband and I only dream that we can own a home, something to call our own. Something that is ours that we can put our energy into. But we have slipped through the cracks in society.

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10 October 2014

hoolibob says:

It is now almost 2yrs since I logged in a comment & despite having a care receiver with a degenerative condition I am still stuck on Carers Allowance & Newstart & denied Carers Payment. My Centrelink qualified over 70yo disabled for 20year has been deprived a fully attentive carer because I've been juggling her care with my Newstart requirements. 2years ago I was doing about 45hrs a week care (Centrelink assessed about 28.5hrs personal care plus episodically bad days, mental stimulation, housework trips to the doctor etc). Despite the Carers Recognition Act 2010 I now have a Newstart requirement of 38 hours on top of my 45 hours a week care. Doesn't sound like much respect to me. The Dept seems to have totally missed a normal working week in Australia is 38 hours because my application was knocked back because I wasn't doing 56hrs a week Centrelink definition personal care based on 1 good day in 12 weeks. I wasted my time fighting it all the way through to what is supposed to be an impartial that must follow the law Admin Appeals Tribunal which I lost. There is in Carer Payment qualification an eg. of Mrs Abbott who by calculation does 28hrs personal care a week I exceeded that. In Carers Payment qualification Working Credit Participants there is clause 3.6.4.10 which gives a figure of 25hrs personal care for people leaving Carers Payment yet that is not applicable for people going on Carers Payment. The Tribunal senior member disregarded this because he believed what Centrelink rep said that this clause was to get people used to going back into the workforce. This was blatant perjury as someone with a work in credit balance has had recent experience in the workforce more so than other carers that have not. In the Social Security system all are to be treated equally if one person qualifies at 25hrs all must qualify at 25hrs. There was also a prior to Social Security Act 1991 AAT ruling that said carer payment qualification should be equal to a normal day in care. A normal day in care is 9-2pm 4 days 20 hrs total a week only & includes stimulation activities. The assessment of my Carer Payment hours was taken by Centrelink from the Carer Allowance form on which carers are told not to include housework, anything outside including medical treatment & stimulation activities. The dept finances the Hilda Report which gave an average housework figure of 17hrs. This must be done for generosity sake because they are clearly not using it to calculate figures in terms of a normal working week. I can of course if I have a spare $3,000 hanging around take it to a Federal Court situated in my case180km away and waste valuable time away from a care receiver who needs me more now. The only advocacy we need is either a Royal Commission or a Class Action. Currently the department's forms are in breach of the Disability Act (they can not restrict disabled care receivers access to the outside by limiting carers) and the assessment methods in breach of both their own Social Security Act, the Carers Recognition Act 2010 & Fair Work Australia Actthis has been done to numerous carers.

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