Doc 14 An Ideal Carers World for the RC Aged Care 21 March 2019
I have resubmitted this document to the Royal Commission for Aged Care and to the Royal Commission for Mental Health 11 August 2019
My mission is to protect all carers as we have a global dementia humanitarian crisis
We cannot wait for the elusive dementia cure and treatments to be discovered, because so many carers lives are being destroyed now.
Why is it most caring is done by women, like child rearing and housework which is always taken for granted. Yet without all our hardwork the world could not function. Women are consistently paid less than men, this news article 19 November 2019.
Carers around the globe are taken for granted, forgotten and ignored. I’m determined to change this and one day I will speak at the United Nations in New York.
I have been working on these carer strategies every day for the last 2 years to protect everyone's futures.
Just like climate change, dementia is affecting everyone.
With our aging population won't your parents as they age, require home care?
Won't you need it too when you age, with over 100 forms of dementia, a cure/ treatment is a long way away.
?Why, because 1 in 3 will be diagnosed. 1 in 10 become carers, destroy carers health and financial security and the governments are forcing carers all onto welfare for the next 30 years in their old age with ill health, after all our sacrifices.
Your children and grandchildren, much smaller generations will have to pay much higher taxes to support all carers on welfare in their old age, as the long term solutions were never considered.
Only those who are very rich can afford it and only those who have nothing, are in aged care facilities as the government provides their care.
For everyone else the costs to put their loved one into an aged care facility, is just way too expensive. Did you know 70% are cared for at home by loved ones.
For everyone else in between, we are destroying our health and financial security and saving just the Australian government $60 billion pa for all our selfless care, and paying for everything with zero tax concessions and I'm determined to change this for everyone.
My choices were,
Sell everything to put mum into an aged care facility which would mean anything from $600,000 to $1,000,000 cash plus $1500 to $2,500 per week for her care
Or take care of mum at home, give up my life, career and had absolutely no idea it would destroy my financial security and affect my health.
We need consistent, just, fair tax and legal rules for everyone.
Just like abortion in Ireland, gay marriage, a black American President, 'they all said this would never happen' and it has. The world must change we must have fair, just, consistent tax and legal rules, for every one and we must protect all carers.
The public sector must have the same work practices as the private sector, so tax payers money is no longer wasted. Then the public sector can attract the best people who will care about their work, are accountable for their service. So we are provided with the best services and care and they ensure we have fair, just consistent rules for everyone. It is so frustrating dealing with the public sector, where so many fob us off and do nothing.
Of course there are a number who are very proactive, provide enormous assistance and support.
?How can I have any credibility without telling the facts?
Where did I get the fire in my belly to fight for all carers around the world because I have been thru hell by our unjust government legislation and policies in Australia.
The first part is my story and how I found the Herculean courage to be so brave.
So many said to me, when mum got her wings, "you don’t need to fight anymore for carers." I said "no, things must change and I’m determined to protect all carers."
The second part is the strategies that all our governments should implement because I have lived it and want to protect all of you.
Including employment, taxation, respite care, care expenses, superannuation, national carers card, higher carers allowance, carers app, support services for children who are carers, legal support
I am not Robinson Crusoe, just have Herculean courage to tell my story, to help change the world for all carers.
Have volunteered with Starlight since 2004.
In 2005 I won Volunteer of the year Award at MLC and won a return trip to New York for all my fundraising and volunteering I have done over the years.
Would you not fight with all your might to hang onto your only asset, my parents bought in 1965. Would you sell your property because of unjust taxes and government decisions, not extravagant living. Of course not, but that's different because 'they' are not in my shoes.
So many suggest to me just sell one unit, whilst they live in a house and have no idea of the many challenges you have being part of a strata, I’m only swapping one problem for an even bigger problem.
I went through absolute misery when I owned another unit in a block of units in Rose Bay.I had 2 court cases from 1998 until 2007 over a water table issue as the Council made the mistake of not requiring hydro-logical and geo-technical reports.
In September 2006 I was forced out of my home, by the tenant from hell who would not let me sleep for 6 months as she was deliberately and constantly slamming doors all through the night. The owner would do nothing. I went to the Law Society for help and discovered to my horror, that tenants have more rights than owners, I could not sue the owner who would do nothing re his nightmare tenant and there was nothing I could do. I was devastated after all the work I had done looking after the strata for 13 years, as Chairman of the committee. I had to move out of my beautiful home and rent a tiny house so I could sleep in peace. I took the tenant to the tenancy tribunal and lost. I wrote to the SMH and had the opportunity to tell my story to Channel 7 nationally and was interviewed by Helen Wellings. Being able to sleep in peace is a fundamental right, just like freedom of speech.
At least by owning all the units I can control the noise by the residents, can make all the decisions, even though it is very hard work and ensure everyone can live and sleep in peace.
I will NEVER go through this again. I just want a peaceful life.
I had a severe nervous breakdown 2010, (spent my bday in hospital ) with my then partners custody court case and my job I loved was made redundant and work rang me 30 minutes before I went into the witness box about a job and this broke my mind. My Drs said no one could endure that amount of pressure. I was so ashamed and embarrassed at the time. Did you know both Abraham Lincoln and Walt Disney suffered from a nervous breakdown ?
They did not think I would recover, I worked very hard every single day for 3 and half years to get well. I lost all my confidence, so asked if I could volunteer in Starlight's head office 3 days a week doing general admin work and did this for 8 months until I returned to full time employment May 2012. I still was not well and did not feel 100 % until July 2013.
Mum was diagnosed with dementia January 2013, we did not have any debts.
April 2013 had mandatory council fire orders with 8 pages of required renovations.
Do you honestly think I wanted to renovate, after being so unwell, my mother had just been diagnosed with dementia and working full time? Had to take out a huge mortgage to pay for the renovations.
As the building was originally a house and is 100 years old, once you start renovations, you open up a Pandora's box of unexpected gigantic expenses. I ended up doing the block without the cameras. Very stressful making endless decisions and choosing everything, I was the architect.
I have cleaned every inch of this building, every tile, cupboard, washed every blind, back and front, ironed all the curtains, washed the floors, cleaned all the carpets. As with all renovations there is dust and grime in every nook and cranny.
2013, was a Starlight Ambassador when they celebrated 25 years in Australia. Had my life story told in the Starlight play, huge honour and took enormous courage.
How much do I tell of my life? How can you understand, if parts of the story are missing, it's impossible. Told it all after much soul searching.
https://www.dhirubhai.net/pulse/all-my-many-challenges-have-made-me-fearless-n-strong-deanna/
It ran for 10 nights at the Monkey Baa theatre, Darling Harbour Quarter, sponsored by Lend Lease. Lisa Chapple was going to play me, but my story was too confronting.
Which is what gave me the courage to tell all my dire financial difficulties to help all carers. I could never understand why I have had so many endless challenges.
I do now, as it made me brave and fearless, prepared me for the Deanna and Goliath Battle to protect all carers and change the world.
With Neil Perry for National Starlight Day on National TV, of course I was dressed in one of my Hawaiian shirts.
Kate Fraser Actress played me in the Starlight Play.
After being forced to resign by a horrible boss due to mum’s dementia the Friday before Christmas in 2014, was absolutely devastated and cried buckets. My salary was $82,000. pa. I had no salary, no income and was in the middle of renovations due to mandatory council fire orders.
JANUARY 2015 first time I thought would lose everything
Luckily could access my super, just met the cut off date with my birthday and sold my shares. I have paid over $120,000 in unjust land tax, when I cannot pay my bills, do all the work, paid for her outings and pull ups $300 per week, ($250 per month for 6 hours carers from St Lukes, $160 per week for Holdsworth seniors community group who took mum out plus $50 per week for her pull ups) - drowning in debt.
Everything is a big secret and I was not aware of the carers allowance until March 2016, when Professor Brodaty mum's geriatrician advised me. You cannot back date it to, when you give up work. What a difference this would make to so many carers being able to back date it. All I received was $63.50 per week carers allowance and $10 per week incontinence allowance.
Since I gave up paid employment December 2014 my salary was $82,000, to become a full time carer,
I have lost $804,810 I am not Robinson Crusoe
This does not include interest nor lost super contributions
$382,000 for my salary since January 2015
$180,000 super spent on living expenses and bills
$120,000 has been paid in unjust annual land tax
$50,000 shares sold spent on living expenses and bills
$55,000 for mum's homecare package that I never received
$14,000 in lost rent as my tenant who worked for NBN, had his contract cut short, by another government decision and it took me over 3 months to find another. Why, because the government has allowed way too many units to be built and so many are empty for months at a time. In the interim, the bills still have to paid
$3810 carers allowance from January 2015 to February 2016, as I was not aware I was entitled to my carers allowance
I had 2 full time jobs, looking after all mum's care needs 7 days a week.
Plus being the property manager, cleaning, gardening, bins, looking after the tenants, maintenance, spending 15 hours a week tracking every penny on a monthly spreadsheet, which I still do. Have had no money in my bank account since 2015.
July 2017 I attended a my Aged Care homecare package information session at Holdsworth our local seniors community group. I was overjoyed I could apply for home assistance to look after Mum and be able to have a weekend off to myself. So booked another ACAT assessment and Mum was assessed as Level 4 Homecare package in August and was approved = $55K pa for care for mum.
But this did not mean she would get one. I had to send 50 pages of forms, bank and credit card statements, title deeds, mortgage payments etc so we could be financially assessed at to how much it would cost us to pay for the homecare package each week.
I posted it all my financial paperwork and mum’s homecare package Lvl 3 was approved in November 2017 . I was thrilled, I met with Holdsworth several times to discuss mums homecare package and the services we needed. I was desperate to have a weekend off, I wanted cameras installed so I could check on her from my phone as it’s impossible to be with her 24/7. I wanted her outings paid for and her nappies.
I started on this journey of being a loud voice for all carers, when I was facing a $1 million dollar fine from Council for not being compliant with mandatory Council Fire Orders in October 2017.
OCTOBER 2017 second time thought going to lose everything.
The stress was too much, I had severe chest pains going down my left arm. I let Council know I was not well with way too much stress and I would be in touch, as I had one unit vacant and was unable to do the last of the ceilings. I put Mum into urgent respite care. I did not care the aged care facility had not processed all the paperwork. Mum was going in, regardless as I was at breaking point.
I went to see my GP got a referral to a Professor who saw me in a couple of days. They did not tell me at the time, they were very worried. I had every possible test to check my heart, CT scan with ink, blood test, angiogram, numerous ultrasounds to check all my valves. Thank fully my heart is in very good health. I have no money in my bank account, told him my story and asked could he just bulk bill me, which he very kindly agreed to.
I had a rest and regrouped and got in touch with Council who were very kind and compassionate and understood my dire predicament. I had to provide a builders report and electrician report on all the fire orders completed, there is 8 detailed pages of work that had to be undertaken throughout the building. With only the outstanding ceilings remaining. They would wait until I could afford to install the ceilings.
Not fair I could not access a homecare package, because my paperwork was lost 4 times by Centrelink and there is a waiting list of 176,000 for a homecare package.
When you are entitled to $55,000 pa in care services, which would allow you, to have occasionally have a weekend off.
Not fair to pay for everything, do all the work, destroy your health and financial security, never have a weekend off, cannot afford a holiday and pay unjust land tax where you are taxed twice.
Below this article was published on Saturday 11 November 2017 I was interviewed on what it means to be a full time carer. I prepared 12 pages, and the article was only 700 words.
https://www.seniorsnews.com.au/news/baby-boomer-shares-ideas-for-making-carer-job-bett/3261456/
I started an online petition for a national carers card, have just over 1000 signatures
So this interview and article preparation started me on my mission to speak out for all carers and I decided to send this letter to the Prime Minister and many others November 2018.
https://www.dhirubhai.net/pulse/carers-need-your-help-deanna-mastellone/
From this letter I was invited by Dementia Australia to become a Dementia Advocate. They have given me numerous opportunities to attend various events where my voice can be heard, which has been invaluable and amazing.
January 2018, My Aged care contact me and advise the homecare package has been cancelled. I was absolutely livid after waiting 6 months and then to be advised it was cancelled. I could not understand why and I had to ring numerous times to ascertain what had happened. They lost my financial paperwork. They do not advise you until it is cancelled.
So late January 2018, I completed all the paperwork again and handed it in personally at Centrelink. I follow up this time and after a month, it has been lost yet again and is not on the system.
February 2018 , I ask for the fax number and fax it all again. It was lost again. I am constantly ringing to follow up to see if my paperwork is loaded up on the system.
I met with my local Member of Parliament Gabrielle Upton February 2018
1st April 2018, thought mum had had a stroke, mum struggled to walk, took her to hospital, 2nd April 2018 bought a wheelchair from Aldi and brought mum home. For the next 8 weeks, I kept finding mum on the floor, absolutely heartbreaking. I had to ask a neighbour to help me get her up, as she was slowly turning into jelly and I could not pick her up on my own.
I met with the Prime Ministers office 18 April 2018 to discuss my carers strategies, all thanks to our local Member of Parliament Gabrielle Upton.
April 2018, it is still not in the system, so I fax it again and this time I write on every page of 50 pages, mums name and her My Aged Care number and after many phone calls the financials are finally in the system ready to be assessed.
May 2018 am finally assessed at $10 per day for a Lvl 4 homecare package and now am back on the waiting list for another 6 months.
Did you know Land tax is only assessed on the land value.
It is not assessed on your overall income nor your ability to pay for it.
People do not understand there are huge bills and expenses with property and once they are paid, there is very little income to live on. Owning property is very hard work, I am not a lady of leisure.
Retirees have made many sacrifices to create an income from property rentals. They are mums and dads, trades people, teachers, my dad was a court interpreter who worked 7 days a week to provide for their retirement.
They did not go to the pub, gamble and spend all their income, like so many do. Is it fair if they have worked hard all their lives to provide for their retirement and then be taxed on the income and then taxed again annually on the land value.
Did you know if you had a million dollars in the bank, your annual interest is less than an annual pension?
When I had reached breaking point, drowning in debt, thanks to unjust NSW land tax. I had nowhere to turn to for help. FINE I will help myself.
I had $72,000 of debt, my credit cards, personal loan, including $10,000 outstanding council rates and $12,000 outstanding land tax and $750,000 interest only mortgage due to mandatory council fire orders or face a $1 million dollar fine. I could not afford to pay for help as I knew I would have to pay for mum's funeral. All this debt was not from extravagant living but from unjust annual land tax, I live very frugally. I decided to pay my outstanding Council Rates and sent land tax, receipts of payments !
I wrote to NSW Revenue requesting a meeting to discuss my dire financial circumstances of being a full time carer, without a homecare package and advised will no longer be paying land tax.
I had prepared a folder of all my financials, bank records, statements, monthly spreadsheets where I track every penny, income, bills, 8 pages of mandatory council fire orders, living expenses etc so they could see my dire circumstances.
14 May 2018, Gabrielle Upton my local MP waved her magic wand and a NSW Tax Commissioner was waiting for me for my meeting with NSW Revenue
He was gobsmacked when I explained how dementia, like climate change is affecting everyone and will affect his children and grandchildren having to support all carers in their old age for the next 30 years. He completely agreed with me, things must change. I asked please do not send the debt collectors after me, have had enough, looking after my mother 7 days a week and am beyond exhausted.
https://www.dhirubhai.net/pulse/my-meeting-nsw-revenue-tax-commissioner-re-unjust-14-deanna/
Because Centrelink had lost my financial paperwork 4 times for a Homecare Package and cancelled it. It took me 6 months to get my financial paperwork in the system for it to be assessed.
I was advised when it was finally assessed in May 2018 I only had to pay $10 per day for her level 4 homecare package. Only then did mum return to the back of the waiting list for at least another 6 months.What this means is, with a level 4 homecare package she would have access to $55,000 pa to spend on services and care to look after her at home and it would cost $3,650 pa.
However self funded retirees do not have respite care included in their homecare packages and you must pay for this and it is not tax deductible. After working 7 days a week for $1 an hour all you are entitled to is $63.50 per week carers allowance. And then you have to pay someone to do your job so you can have a rest. Is this right ? Is this fair? Of course not !!!
1st June 2018, Mum had stopped walking and I could not access any assistance. I hired a hospital bed to help me sit her up to feed her.
I knew mum was dying, once she stopped walking. I have never known such anguish, despair and had absolutely nowhere to turn to, for help.
Mum went down very fast once she stopped walking, absolute blessing, she was gone in 13 weeks.
2nd July Malcolm Turnbull announced $38 million for dementia research, one of my carer strategies, (not the amount of money) - thrilled !
After my meeting on the 14th May 2018 with a NSW Tax Commissioner.
2nd July 2018 I still had the NSW Chief Tax Commissioner threaten to default my mortgage, (which means I would lose everything) unless I continued to pay unjust land tax of $12,000 till December 2018.
I was absolutely gutted and cried buckets.
JULY 2018 MUM WAS DYING, PETRIFIED FOR A THIRD TIME GOING TO LOSE EVERYTHING
Rang my local MP Gabrielle Upton in tears and was advised to put it in writing and she would assist me.
When I posted this up on social media, I copped so much criticism and lost friends, who know jack shit and have mouths the size of watermelons. Why are so many, so quick to judge and criticize, when they have no knowledge of the hell and misery I was going through. How many other carers are in such dire circumstances but they tell no one, as there is huge shame and embarrassment when you are facing gigantic financial difficulties.
They completely underestimated me, they thought this would scare me away, been through way too much in my life, am scared of nothing !
I was so hurt, upset and then I was absolutely LIVID !!!
https://www.dhirubhai.net/pulse/all-my-many-challenges-have-made-me-fearless-n-strong-deanna/
In desperation I rang St Vincent's hospice, hoping I could book her in, they said, no, not possible to admit someone with dementia, there is absolutely nowhere to turn to for help. Why is it elsewhere in the world you can ? this must change too !
They advised me to contact my GP to organise with Uniting for the Geriatric Flying Squad.
My GP got in touch with Uniting at War Memorial who sent out the next day the Geriatric Flying Squad team who assessed mum. They immediately organised an air mattress to help with mum's bed sores and hoist at no cost. The nurse came over every couple of days to dress her bed sores.
How many other carers are in this situation ???? The geriatric flying squad told me there are many, many in my shoes who are drowning in debt, cannot access any help, refuse to sell.
There are 176,000 on the waiting list for Homecare packages.
I contacted the media for assistance, no one would help me. I wrote to the Premier and requested a meeting, was fobbed off.
9 July 2018 I wrote to 80 NSW MPs and rang 25 of their offices.
?
16 July mum's funding for her level 4 homecare package came through.
However that night I broke my right wrist. When you are beyond exhausted from working 7 days a week and have gigantic financial worries that cause you many sleepless nights. We all do stupid things, I was watering the garden at night, as this was the only time I could do it, I tripped and fell heavily backwards on the concrete and broke my right wrist.
Even with a broken right wrist this did not stop me from writing to many politicians, thanking them for their assistance with mum's homecare package, I wrote with my left hand.
Mum had to go into urgent respite care and of course this is not included in a self funded retiree homecare package, I paid for it on my credit cards. 6 weeks later she got her wings and I had to go into even more debt to pay for her funeral.
I firmly believe out of everything bad, always good comes!
I had no other option but to fight for justice for every carer!
This huge injustice created the fire in my belly, my determination and mission to change the world for all carers and stop others suffering and ensure they do not endure the hell I have.
Just like my beloved Mum who fought for 8 years to save Rose Bay from a giant marina and won the battle, she never once gave up. So the bay is protected for everyone to enjoy the views to Manly and it is not filled with plastic trophy boats that go nowhere.
My story submitted to the Royal Commission for Aged Care September 2018, mum's diagnosis, no debt 2013, impossible to access any help, unjust taxation to drowning in debt after sacrificing everything and doing all the work
https://www.dhirubhai.net/pulse/royal-commission-aged-care-taxation-impossible-mastellone-m-com/
I have had nothing in my bank account since 2015, as it all goes on bills and my bills exceed my income all thanks to unjust land tax, where we are taxed twice.
I’m still drowning in huge debt from unjust land tax, not from extravagant living, still paying off, my $8,700 in respite care so I could have a rest, my mothers funeral costs, who passed over 12 months ago and have yet to intern her ashes and organise her headstone with unjust land tax. Have yet to sort out Mum's things. Way too many battles and not enough hours in the day.
My car, have had it since new is 20 years old next April, still goes like a rocket and I call it the Millennium Falcon. My wonderful mechanic assures me, he will keep it going for a few more years.
If I chose to return to work, my tax rate would be 49 cents in the dollar plus PAYE tax, on a salary of $82,000, so all I would be doing is working to pay tax.
I cannot afford to pay my accountant to put in my tax returns for the last 4 years, the ATO owes me money, as my bills exceed my income.
Interest only mortgage has increased $600 per month since 2016, yet the Reserve Bank interest rate has dropped dramatically. All bills have increased, yet cannot increase rents, salaries not increased, property prices dropped 20% and rents have dropped 10%.
NSW Land tax has not followed property prices and rentals
If I sell, will have capital gains tax except for my 1 bedroom unit that I live in, plus pay off my huge mortgage and will end up on a pension.
Even though my parents bought this property in 1965 and is now in my name, there is a capital gains tax bill if and when the property is sold. My beloved Dad worked 7 days a week all his life, paid his taxes to provide for our futures and retirement. He would be heartbroken to see me in such dire circumstances.
?I could never understand why both my parents were always buried in papers, they both always fought for justice. They both had brilliant intellectual minds
Now I'm following in their footsteps as I’m buried in papers with so many battles.
I did not sacrifice everything, work hard for nothing, 7 days a week, to lose everything.
How many other carers are in the exactly the same position or worse than me, have lost everything ?
After doing all the work, sacrificing their lives, their health and financial security.
We are saving Australia alone $60 billion pa for all our selfless care and our health and financial security is being destroyed by unjust government legislation and policies.
Is this Right ?
Otherwise all children and grandchildren will be left with the burden of much higher taxes to support all carers for the next 30 years as the long term solutions were never considered.
Your parents will need care and then one day you will need care.
We must change this for everyone !!!
The world is watching the Australian Royal Commission on Aged Care, am determined WE set the benchmark for the world.
My 2 Minute speech at the Royal Commission for Aged Care round table 27 September 2018 to help determine the terms of reference.
My speech helped ensure Homecare packages and carers are included in the terms of reference
"It is absolute hell on earth being a full time carer for a loved one with dementia at home without a homecare package, zero tax concessions = huge unjust financial worries, sleepless nights, living on my overdraft since 2015
Dementia sucks the life out of you, being endlessly patient, showering and dealing with double incontinence, makes us all feel like the walking dead from sheer exhaustion 7 days a week.
The Government cannot destroy our health, financial security, expect us to pay for everything, give us no help, nor tax concessions, when we have given up our careers, spent our super, when we are close to 60 and cannot return to our former careers.
If this is not addressed in a holistic way, the government will be leaving a gigantic legacy of the biggest generation the baby boomers forced onto welfare.
Carers are saving the government $40 billion dollars per annum. 1 in 10 Australians are carers
There is no age limit for those who need care, dementia, illness and frailty do not discriminate by age.
Carers by definition must also include children too
It must cover Taxation and every Finance Minister must attend
I was threatened by the NSW Chief Tax Commissioner to default my mortgage
We need a centralised taxation file system where everything is listed including dementia diagnosis
We need every Legal Minister attending, there is no legal protection for Carers FROM their families
No waiting lists for Lvl 4 Homecare packages, my paperwork was lost 4 times
Respite care must be tax deductible , included in all homecare packages, able to be booked in advance.
National carers card not means nor age tested
Carers Ombudsman
Carers Hotline 24/7
Carers Allowance $63.50 able to be backdated
Stop Cold calling charities
Carers Affairs for all carers like a Veterans Affairs"
?My local MP Gabrielle Upton kindly found out I could apply with the NSW Revenue Hardship Board. Of course this is a gigantic secret and when I rang NSW Revenue guess who I had to ask for the form from. The one, who rang on behalf of the NSW Chief Tax Commissioner on the 2nd July 2018 who threatened to default my mortgage unless I continued to pay my outstanding land tax of $12,000 till December 2018. Of course she refused to give me the form and said "you will have to sell!" Did this stop me NO !!!! I ended up writing to every single NSW MP individually only 135 of them to ask for their assistance. 3 weeks later the forms were up on the internet, some very kind souls helped me
https://www.dhirubhai.net/pulse/trying-access-form-hardship-from-nsw-revenue-like-mastellone-m-com/
Then of course my Hardship Claim was declined 4 February 2019. Did I give up? NO !!!! I wrote again to every single all 135 NSW MPs with their response and mine
I received this lovely response to my email from Damien Tudehope who has since become the NSW Finance Minister
I am not against taxes, but I am against destroying carers who sacrifice everything, are saving the government annually $60 billion pa for all our endless unpaid care, paying for everything, with zero assistance and my mission is we protect all carers health and financial security.
Is it fair community care services charge $90 for 30 minutes, to shower, dress, change their pull ups and full time carers of their loved ones only receive $1 an hour $63.50 per week carers allowance.
Just want what is just and fair for every Australian and every carer 1 in 10, so there is not a huge welfare bill for future generations to support us in our old age
My speech at the Royal Commission Forum Bankstown 1st March 2019 in front of 300, my story from diagnosis 2013 of Mum no debt, no mortgage to drowning in debt, not able to access any assistance.
https://www.youtube.com/watch?v=b7lnm_8o9FY&t=223
Commissioner Briggs was very kind and allowed me to speak for 6 and half minutes, when I was only supposed to speak for 4 minutes.
https://www.dhirubhai.net/pulse/bankstown-rc-aged-care-forum-1st-march-2019-deanna-mastellone-m-com/
ABC 7.30 report journalists approached me after my speech at this forum and wanted to do my story, but of course nothing happened. The government in particular NSW Revenue, do not want my story in the media. I have been approached by others and it all goes cold.
Underestimate me, that will be fun ??????
?The more fob offs I receive, the harder I fight, sending off my ballistic missiles of truth, far and wide, connecting with many community and corporate leaders around the world who are reading my articles and posts.
May 2019 NSW Revenue held some market research into Land Tax and I was delighted to attend and have my voice heard.
I keep writing to the NSW Premier asking for a meeting re carers and unjust land tax, her team, keep fobbing me off and keep collecting their file 13 replies going nowhere.
I even wrote to the Prime Minister asking for his help and he wrote to the Premier's office on my behalf re unjust land tax, of course this was fobbed off too.
They keep hoping I will give up, BUT THAT WILL NEVER HAPPEN
https://www.dhirubhai.net/pulse/revenue-nsw-ministerial-response-you-only-make-me-mastellone-m-com/
Have even started writing to every single Member of every Parliament in Australia.
The Attorney General of Tasmania even kindly wrote on my behalf to the Federal Aged Care Minister re unjust land tax
Have been collecting suggestions and ideas from other carers which are included in this article
?Every day, we read of new treatments, tests, cures, the world is desperate for one, TODAY.
The sad reality, it is still, a long way away with over 100 types of dementia.
My beloved Mum did everything right, eat only organic food, cooked with stainless steel pans, exercised every day, used her brilliant mind. She taught at UNSW for 30 years. Ran the Rose Bay Residents Association for 20 years fighting for justice. And she still was diagnosed with dementia in January 2013 at 81 years of age.
I read up on all the right foods she should eat, blueberries, she had them everyday, I read up on all the vitamins she should take. Poor mum rattled every day with so many vitamins. She attended Tai Chi classes, Lesley one her amazing carers took her to yoga once a week, but sadly she still declined. As she did, all I cared about, was, is Mum happy. that was my goal every single day. She could eat whatever she wanted, chocolate / ice-cream for breakfast, lunch and dinner. She hated showering, I made it a game and made sure we laughed every single time she had one and made sure we laughed every single day.
Our bodies were not designed to live so long, we are living far longer.
Programmed senescence time to live. has a cut off point of living well to approximately 70 years of age. As we are living much longer well into our 80's and 90's and beyond, 1 in 3 are being diagnosed with dementia.
Dementia is where their brain is dying, and parts of their brains stop working and for each one, it is a unique journey. It can also be called 'failure of the brain,' 'selective amnesia'. When a Rolls Royce breaks down, Rolls use to day 'failed to proceed.'
Everyone is frightened of being diagnosed with dementia, and so much is being done to create dementia friendly communities, ensure they have much support and care so they have a great quality of life.
But so little is being done for carers and I'm determined to change this around the globe.
When I attended the Royal Commission in May 2019 when it was seated in Sydney, I listened to a very eloquent and articulate Professor who discussed aged care facilities and the many challenges.
I was sitting next to someone and said "we must change the legal and taxation system so it is just and fair for everyone". They replied, "Oh that will never happen!" I thought to myself at the time, "then what's the point of the Royal Commission?"A few moments later I received a message on LinkedIn which said "you are brilliant, the world needs you!" I had connected with another the day before and had sent her my articles to read and she kindly responded after reading them. I thought "OK I must never give up and I must keep fighting for every carer around the globe!"
At morning tea I went up to the Professor and asked "what about carers the other 70% who are taking care of at home their loved ones?" He replied, "well that will need someone with enormous energy!" I replied "Well that's me, and I'm going to change the world for all carers with my carer strategies!"
Dementia is a very complex issue
I have chosen my battle - to protect all carers who are the silent sufferers of the global dementia pandemic.
I don't have all the answers. But we have to start somewhere. Hence why we will need a second Royal Commission for Aged Care to reassess what has been implemented and to ensure all issues have been adequately addressed.
I am keyboard warrior dressed in my pjs, slippers and dressing gown, firing off my ballistic missiles of truth to change the world so all carers are respected, supported and protected.
11-12 September 2019 Attended an amazing 2 days Deloittes workshop thanks to Dementia Australia who invited me to attend as a dementia advocate . Was able to have my voice heard and share briefly my story, experiences, knowledge. A room full of passionate, inspirational people working to create amazing innovations that will transform carers and dementia lives. Learnt so much on how to prepare and deliver my speech in Rome.
I wrote to Commissioner Briggs Sunday, September 15, 2019 12:05 AM
Dear Commissioner Briggs
You were very kind when I spoke at the Bankstown Forum 1st March 2019 and allowed me to speak for 6 and half minutes and tell my story, when I was only supposed to speak for 4 minutes.
You may recall, we spoke in the tea break and then I was approached by journalists from ABC 7.30 Report and they wanted to profile my story. Nothing ever happened. This is not the first time this has happened, have been approached by other journalists and then the story always goes cold. Why, because the NSW government in particular NSW Revenue does not want my story in the media. It has never been about me, it’s about protecting all carers.
I have attached letters, spreadsheets and documents of my dire financial circumstances. I am not Robinson Crusoe just brave and fearless and speaking out for all carers.
I work 7 days a week for nothing, to hang onto my parents legacy. I do not live extravagantly and have sacrificed everything, as most carers do.
I am asking for your assistance to ensure the Royal Commission on Aged Care has a big focus and reforms our extremely unjust taxation system as well as our legal system.
https://www.dhirubhai.net/pulse/revenue-nsw-ministerial-response-you-only-make-me-mastellone-m-com/
https://www.dhirubhai.net/pulse/my-meeting-nsw-revenue-tax-commissioner-re-unjust-14-deanna/
https://www.dhirubhai.net/pulse/royal-commission-aged-care-taxation-impossible-mastellone-m-com/
My three favourite movies, they are true inspirational stories, where ordinary individuals, were passionate about their dreams and made the impossible, possible, through sheer , unrelenting tenacity, extraordinary courage and fearlessness.
Erin Brockovich, made in 2000 with Julia Roberts (who won the Oscar for her extraordinary performance) who took on a billion dollar company and won their law suit
Eddie the Eagle made in 2016 with Hugh Jackman and Taron Egerton who learnt to ski jump at 22 years of age in 1987 and participated at the Calgary Olympics in 1988 for Britain.
Hidden Figures made in 2016 with Kevin Costner Mary had to go before a judge to gain permission to attend an all-white night male school so she could become an engineer at NASA.
Katherine was the one who worked out the mathematics with her brilliance to send the first astronaut into space and then worked on the Apollo program.
They all achieved their dreams, with others who dared to believe in them and their dreams and helped them reach for the stars.
It’s always a team effort who achieve and live the impossible. And I’m asking you to help me change the world for all carers.
I update articles on a daily basis. Have updated an ideal carers world extensively which includes strategies for all governments around the world to implement to protect all our futures
I work every single day on my mission to change the world for all carers, using social media, posting my articles and support for carers on dementia carers Facebook groups and connecting with many on LinkedIn.
I have many reading my articles and posts and have been collecting their responses to my advocacy
https://www.dhirubhai.net/pulse/carers-responses-my-posts-linkedin-dementia-facebook-deanna/
My dream is for every location around the world to have a carers cheat sheet for all their services which includes links
My carers tips for looking after a loved one at home
https://www.dhirubhai.net/pulse/carers-tips-looking-after-loved-one-dementia-deanna-mastellone/
I leave for Rome 1st October to speak at a global dementia Conference and return 18th October 2019
Gough Whitlam famous quote “The punters know that the horse named Morality rarely gets past the post, whereas the nag named Self-interest always runs a good race.”
My next dream is to speak at the United Nations in New York to ensure all carers around the world are respected, supported and protected.
The silent sufferers of the global dementia pandemic need your help with their endless sacrifices. So they are respected and their health and financial security is protected as you dared to believe and helped make the impossible possible.
Many thanks
Kind Regards
Deanna Mastellone
In Australia, journalists are now prosecuted for embarrassing the government
And what about carers the 1 in 10 who look after the 70% at home ??? Only 30 % are in aged care facilities. Every full time carer sacrifices everything, works 7 days a week for nothing with our selfless care to look after a loved one at home saving the world billions and billions of dollars. Destroying our financial security and health
The truth hurts, you can't hide from the truth, it always come out in the end.
Unpaid caring is becoming a human rights issue
https://www.caringfairly.org.au/resources/unpaid-care-emerging-human-rights-issue
An Ideal Carers World
Cancer diagnosis, some are there to help. There is far greater awareness, compassion, understanding and support services for cancer
Should be the same for Dementia Diagnosis it is a terminal illness with no cure
?
We have put our lives on hold, given up our careers and make endless sacrifices.
Carers need greater awareness, recognition, compassion and understanding
Provide a cheat sheet when a loved one is first diagnosed so they can access services NOW
My dream is for every location around the world to have a cheat sheet for their services including links and if they don't have these services, create them.
July 2019 I have sent this link, as well as My Carers Tips and an Ideal Carers World to the Australian Medical Association who suggested I write to the Royal Australian College of General Practitioners to ensure every GP has access to this information. The President kindly replied " We are currently updating our aged care guidelines. The guidelines will include advice to GPs about the importance of support for family and carers and will direct GPs to resources like Dementia Australia."
I sent the spreadsheet below to the Royal Australian College of General Practitioners on the 19th September 2019 you may find useful for your aged care guidelines website for all GP’s.
This is a work in progress, updated 26 September 2019, as I keep learning of new invaluable information
I Government Policy and Legislation
1 All local doctors GP’s are trained on dementia and services
My Aged Care homecare packages and ACAT
2 On all forms ‘are you employed’ should include ‘full time carer’.
Full time carer should be included, under employment details, instead of retired, unemployed, full and part time employment
3 Centralised tax file number, where everything is listed including
Geriatrician advises ATO of diagnosis of dementia patient and primary carer on both tax files
Dementia diagnosis
Homecare waiting list
Date when gave up employment to become full time carer
Provisional tax
Mandatory council fire orders
Mortgage for mandatory council fire orders
Land Tax
Centrelink payments
So they can see, can you pay your bills? What is just and unjust?
Because right now there are all different systems that do not talk to one another, which is creating huge stress for every carer with unjust state and federal legislation and government policies.
We need to throw out our extremely complicated Tax Act and start again and make it much fairer, simpler and consistent
In Hong Kong, they have have a flat rate of 17% so everyone is happy to pay their share of taxes.
No wonder so many find ways to not pay tax
Whereas in Australia with the black market of cash run businesses the country is losing $ 7-11 Billion in lost revenue.
If we were not taxed so high, far more would be far more willing to pay their share, instead of avoiding paying tax at all costs.
Go after the high end individuals who pay little or no tax.
The Asian community who pay zero land tax because they put a different date and place of birth for every property they own.
Go after all the companies who do not pay any tax.
Why is gas and oil companies off the coast of Western Australia, pay no tax, no royalties. They should not be allowed to set up nor drill unless they agree to pay their share of tax from their profits.
Every transaction a company makes should have a small tax, that way everyone shares the tax payments.
If every transaction in a bank account was taxed 1% , then there would be no need for income tax, as everyone shares the load and the government will have plenty of revenue to look after the country.
Disgusting when so many companies pay next to nothing in taxes when carers are saving the country $60 billion pa for all our endless sacrifices and receive zero tax concessions ??????
Things must change.
In this budget 2019 -20 the government plans to spend $4.36 subsidising pollution for every dollar it spends on climate action.
- $40 billion for the diesel fuel tax credit subsidy across the forward estimates, nine times the total budget for the environment.
- A 39.7% per cent cut to the environment budget since 2013.
- An overall environment budget of $900 million for 2019-20.
https://www.acf.org.au/budget_2019_20_devaluing_our_environment_fuelling_global_warming
Only 10 companies pay 45 per cent of all corporate tax.
Uber took $785 million profit out of Australia in 2018 and only paid $8.5 million in taxes, when they should have paid far more.
A $691 million “service fees” charge, otherwise unexplained in the accounts, did most to reduce the company’s taxable income.
Why is it allowed so many high end individuals get away with paying little to no tax !
Rich Australians lobby tax office to prevent increased scrutiny of their businesses.
How to pay $20 million tax on more than $1 billion in revenue — ask Amazon Australia
https://amp.abc.net.au/article/11719232
ATO data reveals almost a third of big companies still not paying tax in Australia
If companies paid their share of annual tax, there would be no need for Land Tax by NSW
Then everyone can be fairly and equitably assessed for taxation and not have unjust financial worries created by the government.
What should happen - we need fair and reasonable practices
When you become a full time carer, it should be on your tax file number, you have given up paid employment, and are entitled to your carers allowance from Centrelink from then,
Carers Allowance of $63.50 should be higher, $1 an hour for 60 hours a week of care.
?We should be entitled to Newstart for giving up paid employment to take care of a loved one full time and not have to go for job interviews as we are full time carers.
You are entitled to claim tax concessions for all your care expenses that would be included in a homecare package
Including pull ups, outings with community care providers, eg equipment, walkers, shower chairs, which is all covered in a homecare package, when you cannot access a homecare package
The government recognises carers need 63 days a year respite care, this is not a luxury, it is a life necessity for our health and well being, or we will be in our graves before our loved ones.
Respite care can be claimed as a tax deduction and is included in all homecare packages.
No waiting lists for a level 4 homecare package, so carers can have a weekend off, to protect their health.
If carers choose to return to work after their loved one has passed, after all their sacrifices they should be taxed at a lower rate, so it is worth their while to return to work.
Capital Gains Tax - this was introduced in the 1980's
When a property remains in the family and was originally purchased prior to the introduction of Capital Gains Tax and is handed down through the generations, there should be no capital gains tax. It is in effect a death duties tax
4 NSW Legislation for Land Tax is Amended
I am determined to ensure this is amended, and includes the following.
Such an unjust tax, when you are taxed twice and cannot pay your bills.
- Retirees, do not pay land tax
- Dementia full time carer, zero land tax
- Mandatory council fire orders and forced mortgage you are exempt
NSW Revenue must assess the ability to pay for land tax and must follow property prices which have dropped 20%
I want my $120,000 of unjust Land Tax returned from NSW Revenue.
This has caused me years of sleepless nights and anguish. Am not greedy, not against taxes, just want what is just and fair, when I work 7 days a week for nothing and cannot pay my bills, nor comply with mandatory Council Fire Orders. Paid for all of mum's care with zero tax concessions, could not access a homecare package, spent all my super and shares.
Have had nothing in my bank account since 2015, work tirelessly managing every penny to hang onto my parents legacy, not from extravagant living.
If you don't ask, you don't receive!
5 Legal Protection for all carers from their families across Australia
We need to protect carers financially when they have sacrificed their lives to look after a family member. Once their loved one has passed and their many sacrifices are recognised and protected by the courts from greedy siblings.
Grief protection, they should not be forced to sell the family home for two years.
Courts need to acknowledge the role and sacrifices of carers in families.
Should not be equal when one family member gives up work and sacrifices their life to care for an elderly parent. Other family member (s) then take this to court and the legal fess comes out of all the estate.
Carers do not need this additional stress after all the sacrifices they have made and utter exhaustion from caring.
There must be legislation, legal protection and recognition. If other family members do this, then the legal expenses should come out of their share of the estate not the carers share.
From the estate the carers super should be returned from the siblings share. This should be law. Plus the super they would have earnt whilst being a carer.
Capital gains tax, when one sells property, super amount should be deducted from the capital gains tax, plus the super amount they would have earnt whilst being a carer.
Plus income lost for caring for parent.
Plus all out of pocket expenses for looking after parent
Far more needs to be done to look after carers as they are the hidden victims who are suffering terribly trying to hold it all together for no pay and no understanding.
Most carers are drowning in debt not because they are extravagant
6 Public servants must be accountable the world over, like the private sector
With my dementia journey I have had to liaise with so many public services, many times was so frustrated by their lack of service and care. This is common all over the world.
Our taxes pay for public servants to look after us and they don't, they do as little as possible and there is nothing we can do about it, until we change their terms of employment and they become accountable.
We have a lawless society where we have toothless authorities who do nothing but fob us off, including the Law Commission, Ombudsman, Regulatory Authorities like Sydney Water and Sydney Roads.
Consistent employment rules for everyone, if you do your job, you have nothing to worry about.
No more lifetime employment when our taxes pay for them to look after us, when so many do as little as possible, watch the clock and only work minimum hours and still get paid.
Why is it, they can earn more than their salary with overtime, and no one checks their overtime sheets.
If they don’t do their jobs they should be sacked, just like in the private sector.
In the private sector there's rarely any overtime, you have a salary and work whatever hours are required to do your job, meet your deadlines and be accountable.
We want to attract the best people to provide the best service, care and cost effectiveness as so much tax payers money is wasted .
Of course there are a number who are very proactive, provide enormous assistance and support.
7 Mandatory Online Dementia Training for all public Servants
All public servants to do mandatory online training on what is dementia and what it means to be a dementia carer and how to take care of a loved one at home with dementia. To create far greater awareness, compassion and understanding in the community
8 Employment Strategies
Cancer diagnosis, some are there to help.
Should be the same for Dementia Diagnosis, it is a terminal illness with no cure
Understanding re endless phone calls, they cannot remember. I am an only child no other family, so mum would ring me three times in 5 minutes at work to ask a simple question.
They are frightened, they have no short term memory. Employers need to understand their brain is slowly dying and is no longer working. Everyone's journey is unique.
Even if there is a large family, it usually always falls onto one member of the family and the rest do nothing to help in any way, except criticise. Do not assume they have lots of help, because they rarely do. I am an only child and had no other family, so had to do everything. We have to take over their finances, run their lives and it is absolutely exhausting.
All dementia carers need flexible work practices, where they can reduce their days of employment as their loved one declines. Every person with dementia declines differently and it affects them differently. There are over 100 types of dementia.
Where they can work from home, if need be, as their loved one is having a bad day and they need to be cared for
Career breaks like maternity leave but longer so they can return to their employer, very hard to return to their career when over 50 years of age huge ageism and this must stop.
Carers can return to work part time, as they are exhausted from being a full time carer.
Impossible to find part time work
Assistance returning to their careers after being a full time carer
Greater understanding and respect for all full time carers who have sacrificed everything to take care of their loved one and are able to return to work if they choose.
I was forced to resign the Friday before Christmas in 2014 due to a horrible boss, due to my mother's dementia, this should never be allowed
Ageism alive and well, says one woman who applied for 200 jobs abc 22 Nov 2019
https://amp.abc.net.au/article/11724368
More carers’ leave may help Australians look after elderly parents and stay in work
9 TV advertisements like they did with Aids
Encourage donation of brains for research, announce how and where
We need to educate the community on dementia as there is huge ignorance. So when there is a diagnosis of dementia, most rush to help like cancer, instead of all disappearing.
Like Air Crash investigations, this is how not to do it and this is how you should do it. Eg don't correct them, just agree as you can never correct nor argue with someone who has dementia. Listen to their repetitive stories, listen to the same questions they ask repeatedly, like they did, when you were a child. Their brain is broken and they have no short term memory.
Had I known we could donate their brain for research and where, I would have gladly have done so, to help find a cure and treatment for this horrendous terminal illness
10 When they are dying and cared for at home - can be admitted to a hospice
Able to admit them to a hospice, as a lvl 4 homecare package is just not adequate care and every one deserves to pass with dignity and the best of care. Our Elderly parents, worked hard all their lives, made many sacrifices and made this country what it is today.
Everyone deserves the best of care when they are dying.
Why is it, if you are terminally ill with cancer you are able to be admitted to a hospice, the rules need to consistent for everyone.
Elsewhere in the world, you are able to admit them to a hospice where they are provided with the best of care
Attended Parliament House on Thursday 21 November 2019 and am delighted Dementia Australia have taken up this battle at their annual Parliamentary Friends of Dementia.
11 Children must be included in the definition of carers
We need to support all children who are carers, there are many services for children with cancer, but not for children who are carers, with young onset dementia, we must ensure children have fun in their lives and their childhoods not destroyed by being carers
We need children carer support programs like camp quality for kids who are carers
Livewire program like Starlight Program for sick kids. Need an online program for kids who are carers, where they can chat, where it is supervised and there are many fun resources for the kids. So they don't feel so isolated.
Able to access Drivers License 6 months earlier
Able to have kids credit card linked to parent's credit card, would make life so much easier
Lives of Australia's 'largely unrecognized' unpaid carers the focus of new campaign, 3-legged challenge 10 February 2019 children who look after their parents
https://amp.abc.net.au/article/10778824
12 Create a Carers App to organise help with family and friends
Checklist of what things you need to set in place
Install disabled handles in shower
List of contact phone numbers
Link shopping list so others can do the shopping
Link to pay for shopping
Should be set up like a open diary with all jobs need doing
Meals and pick up appointments at school, doctor, coffee break, go shopping
Request for cooking, eg soup, salads, deserts, everyone gets tired of spaghetti bolognaise and lasagne
Every week need help to do this each Tuesday
Eg need assistance with washing, change sheets, clean home
Has capacity to list every morning need someone to Pick up kids 6.55am drop to school bus
Be able to send out reminders what needs to be done and what is up for grabs
What to Say Instead
Try these comments, instead:
- Can I help by driving you to the doctor?
- I’d like to come over and sit with your husband while you go out.
- What day of this week works best to bring dinner over?
- I’m praying for you.
- How is your loved one doing?
- Here’s a gift certificate for ice cream or coffee.
- Would you like to talk about it?
- How are you really doing?
- Can I help you with the laundry?
- I thought of you and would like to bring a care package. When may I stop by?
13 Carers Only Ombudsman
Carers Ombudsman, who can liaise with all levels of government throughout Australia, including Local, State, Territory and Federal Governments.
Exceptional Circumstances
At times Carers do not have guardian nor power of attorney yet do all the work.
At times carers stop other family members seeing dementia person needs arbitration somewhere to turn to
Carers are bullied by other family members
14 Create a Carers Affairs - like Veterans Affairs
To provide and protect all carers who have sacrificed their lives and saved the country $60 billion dollars per annum for all our unpaid care
Many older women are becoming homeless
Why, because they are the ones that do most of the caring, sacrificing everything and we must protect them. Women over 55 years of age, fastest growing homeless people in Australia.
15 Euthanasia
We want to have a choice prior to being diagnosed with dementia
No baby boomers want to go into an aged care facility nor be a burden for their family, children or community.
We have watched our parents suffer with dementia with lack of care, services, support and respect
Hawaii end of life choices
https://www.youtube.com/watch?v=4y7nYw0yhgI
We're honored to work with Richard Chamberlain to support Hawai‘i residents in advocating for autonomy at the end of life. https://www.compassionandchoices.org/i... In passing the Our Care, Our Choice Act, Hawai‘i authorized medical aid in dying, another compassionate option for the end
https://www.compassionandchoices.org/in-your-state/hawaii/resources-for-patients/
Euthanasia Dutch Court expands law on dementia cases 22 April 2020
https://www.bbc.com/news/world-europe-52367644
16 Stop charities ringing for donations
Many used to donate regularly to various charities, but with the diagnosis of dementia, can no longer afford to donate, particularly once given up career.
Drives every carer nuts, as dementia patient say yes to everything and then we must send everything back. We have more than enough to do, than worrying about mail and items to be returned.
In the UK they have stopped charities harassing for payments. We should be able to register to stop charities calling on the phone.
https://www.theguardian.com/society/2015/sep/23/charities-ban-fundraising-public
17 Superannuation for all carers who have given up their careers
Carers to be treated as government employees and be paid super at a rate of 12% of their last full time employment salary.
This should be entirely funded by the government
II - CARERS ASSISTANCE
1 Carers Act and Aged Care
Have power and authority and are no longer toothless tigers
2 One Stop Shop for all coordinated support for Dementia Care
Plain English, easy to access information and assistance
Carers need all information in one place, one website that is easy to navigate
Currently it is overwhelming, it is a full time occupation to organise all services.
3 ACAT Assessments - no age limit
ACAT assessment not limited to over 65 years of age. Sadly more young people are diagnosed with dementia. If someone is unwell and needs assistance they should be assessed regardless of the age and illness
Carers should not be killing themselves caring for a spouse who is too young for ACAT, not mentally ill enough for ACAT not disabled enough for NDIS not close enough to death for palliative care but ill enough and demented enough to require round the clock care
Need more programs for young onset dementia and reduce the stigma
4 Carers who provide a couple of hours respite care per client per week for full time carers eg through St Lukes through the CHSP
Carers must be paid more and have a lunch allowance included, as they are expected to take clients out for lunch.
They should be permanent staff so they receive annual and sick leave, rather than being a casual with no benefits.
We need to encourage young people to have a career in aged care.
Client managers should no longer receive $500 per client
5 Funding for all local carer support not for profit groups is maintained
All carers around Australia have access to this invaluable support, where they learn from others and do not feel so isolated and alone which every carer feels
6 Weekly carers allowance – should be higher
$63.50 per week, $1 an hour
Centrelink legislation to be updated so all carers are able to backdate their allowance, to when they gave up their career.
There should be a 6 week grace period of time after the death of a loved one as there are huge expenses. $372.00 is not a huge amount of money but will help every carer.
Centrelink legislation to be updated so the Carers Allowance is connected to their Loved One who has dementia, so when their loved one passes, their Weekly Carers Allowance automatically stops, so there is no debt that carers are harassed for.
Just because Centrelink advised you when you received the carers allowance, you have to advise them, how many noticed this? You are so frantic trying to look after a loved one, you don't have time to read the fine print.
We had no debt, when mum was diagnosed in 2013 and I was in full time employment
I have had the debt collectors after me for over payment of my carers allowance by $372.00, have appealed this decision, as I never received mum's homecare package of $55,000 pa because Centrelink lost the paperwork 4 times. I refuse to pay it. There are so many carers who never received a homecare package and then are harassed for the reimbursement of their carers allowance.
Because I want this legislation changed for everyone so it is consistent, fair and just.
My mightiest sword the pen has worked its magic again. 2.30pm 27 August 2019.
Had a call on behalf of the Federal Centrelink Minister the Honourable Stuart Robert who I wrote to last week regarding my outstanding carers allowance debt of $372.00
They assured me, with the Administrative Appeals Tribunal in September, this would not stop me from leaving the country to attend a world dementia conference in Rome. As this was worrying me.
I worked till midnight Thursday night and all Friday morning on my documents and evidence of my story and why this is so unjust for all carers. I attended the Administrative Appeals Tribunal 13 September 2019 re my unjust debt of $372.00 for my carers allowance over payment to appeal this debt.
Did you know financial hardship is not a reason for AAP tribunal to dismiss my debt of carers allowance over payment, it was irrelevant Centrelink lost my paperwork 4 times and Mum never received a homecare package of $55,000.
According to the legislation it is irrelevant I have paid for everything and done all the work, given up my career and because I have assets, I must pay it. According to the legislation I owe $372.00 the government.
I have worked 7 days a week for nothing since 2015, cannot pay my bills and do not live extravagantly. Am drowning in debt when I have sacrificed everything.
I told the judge my story, my dream to change the world and to speak at the United Nations in New York as an advocate for all carers. She wished me well and said it was a privilege to meet me.
The tribunal declined my appeal received their letter 18 Sept 2019
Unless you have lived it, no one has any idea how hard it is to change adult pull ups and the poop goes everywhere. How hard it is to shower and dress them, when they scream as if you are murdering them. How hard it is to answer all their relentless repetitive questions. As they decline you have to pick up everything, they can no longer do anymore. Bureacrats all need to spend a week with a full time carer looking after their loved one, who does not have a homecare package and see what we do, dealing with double incontinence and their world of dementia, 7 days a week.
Until it happens to your family, no one has any idea how very hard it is.
I am absolutely livid, when I read on one of my dementia carer Facebook groups just now, if you receive a carer payment and your loved one has gone into full time care, you receive another 14 weeks of payments to help you adjust. Plus on the same post on Facebook “ I knew they paid another 14 weeks if they pass away”
This was no accident that I saw this post, meant to be, we need consistent just and fair legislation and rules for everyone.
This is criminal, cruel and heartless for those who only receive a carers allowance and have done all the work, paid for everything. Why is everything such a big secret?
19 Sept 2019 I have just written to AAT, RC and various politicians re my unjust debt of $372.00 am appealing the unjust decision
It’s outrageous when there is compassion for those on a carers payment who have made the heartbreaking and devastating decision to put their loved one into full time care, as they can no longer manage looking after them, or they have passed.
Yet there is none for carers who are organising a funeral and have sacrificed everything and done all the caring, when they could not access any assistance. It should be exactly the same and why is it not ? If I lose the next appeal and have no further avenues I will join the class action against Centrelink re unjust debts.
Carers are saving this country alone $60 billion pa and we are hounded for repayments of a carers allowance.
How much money has the government wasted on debt collectors, the tribunal, the paperwork preparation and letters over my unjust debt of $372.00 ????
Far easier to go after the vulnerable little people, as most will just give in, pay and have no voice
If this was the private sector, they would not be demanding payment when they lost the paperwork 4 times and never received any assistance !!!
Yet so many companies and high end individuals, don't pay any tax, so many don't pay any land tax. The bureacrats don't want to change anything, because that will mean they will have to work !!!
I have appealed again this decision
I wrote again another furious letter and said I would never pay this unjust debt and if need be would join the class action against Centrelink. The Litigation Department of Human Services rang me Friday 8 November and said they are waving the unjust debt of my carers allowance of $372.00 am thrilled.
7 National Carers Card
This should be provided automatically with every weekly carers allowance.
Did you know 800,000 carers are on a pension and 2 million are not.
To provide like a seniors\pension card, discount, movie, ballet and theatre tickets, public transport as well as bulk billing for all carers medical expenses.
Must be called a Carers Card, so carers have community recognition
This would be a small recognition for all the many sacrifices and selfless care every full time carer provides 7 days a week.
A companion card is NOT a rest for a carer. Taking a dementia sufferer to the movies is misery for a full time carer, as they ask incessant questions, cannot follow the story and you do not have a break.
A letter from the Federal Minister for Aged Care, stating carers can apply for the pensioner card for discounts, this should be automatic when provided with a carers allowance and called a carers card. Why can't this be done now ???
8 Disabled Parking cards use by all Carers
All carers are allowed to use their disabled parking cards with zero consequences, they have sacrificed everything and are allowed to save a few dollars by not paying for parking. They rarely go out, too tired from being a full time carer.
Carers can use their disabled parking cards without their loved ones on parking meters and parking zones of one or two hours, to save a few dollars, when we are saving the country billions of dollars pa for all our selfless and unpaid care.
9 Video training at carer support groups on Personal Care
Training for dealing with incontinence, it's a major problem, when not properly done can lead to UTI's and subsequent hospital admission.
Instead of learning by trial and error
10 Carers Hotline 24/7 Phone Number
To access urgent assistance and assistance with Homecare Packages, other support services
11 Access to Rehab for Dementia Patients
Rehab staff are trained to look after patients who have dementia.
Right now it is impossible to access Rehab for someone with dementia
12 Respite care - able to book in advance for holidays, taylor to family needs
From date of diagnosis, all carers are entitled to respite care and to accumulate it like sick or annual leave, rather than the entitlement expires every 12 months.
Commonwealth to build and fund respite centres across the entire country.
Centralised date base listing all respite centre vacancies enabling break planning for the first time.
When mum went into respite care, should be able to keep her carers, have no other family, important for her well-being to maintain consistency, continue visitations, continued social interaction,
Need to be exceptions to the rules, broke my wrist 9 weeks respite care not enough, cannot lift anything heavy for 3 or more months. 9 months later still in constant pain, would not have been able to look after at her home
13 Carers Advocates
Its so hard, every carer feels they are drowning and overwhelmed. It it would be invaluable to have someone who would just call you, come see you, talk to you, (and listen!) and find out what you and your LO need to function comfortably and smoothly through the day. Then organise the assistance carers need.
14 Shopping Trolley
We need these in Australia, they are in every state in America ?????? I contacted my local IGA and suggested they should look into these as we need them here too.
As our loved ones decline with dementia, they are not as mobile, and these world be invaluable for all carers.
15 Carers need technology to help us look after our loved ones
Carers need technology that is very easy and cost effective to help us look after loved ones with dementia, when we are so very time poor and beyond exhausted
III - HOME CARE PACKAGES
1 Centrelink portal for your file to upload all your financial documents
Able to upload all your financial documents onto the Centrelink portal and see what is missing so you are compliant and can be quickly assessed for a homecare package.
Once registered for a homecare package you are not removed from the list, even if paperwork is lost. You remain in the queue from date of application registration.
2 Costs of Homecare packages to be affordable and fair
Lvl 1 or 2 same costs as for lvl 3 or 4, need to encourage carers to sign up for homecare packages .
The unjust cost is a gigantic deterrent for carers to sign up for lower level homecare packages.
Prorated amount 1 or 2 hours a week should not be $200 per week.
It needs to Affordable and fair. Cost Graded per lvl to make the financial journey easier .
Early intervention homecare would be invaluable for all carers
3 Homecare Providers
Are regulated and have a cap on what they can charge a client for caring in their home.
At the moment some charge $90 for half an hour for a carer to shower and dress a loved one at home.
4 Maintaining consistency for dementia patients with the same carers
Consumer model where consumers can keep carers, no matter which provider you take up homecare packages.
Established Brokerage for home carers into another homecare package.
Providers work together and ensure training is consistent with all staff
Should be an incentive to work together break barriers down
5 No waiting lists for Lvl 4 homecare packages
It is essential to provide support services when they have stopped walking
For every ACAT Lvl 4 Home Care assessment, there should be no waiting lists, we have worked hard all our lives, paid our taxes, it is hell on earth doing all the caring and not able to access any assistance, zero tax concessions, nor have a weekend off.
It's relentless - 7 days a week job and usually always falls on one family member.
Global estimates of costs saved by full time carers who care for their loved ones at home - 2015
https://www.alz.co.uk/adi/pdf/global-estimates-of-informal-care.pdf
Unless you have lived it and looked after a loved one with dementia full time, no one understands the challenges and utter exhaustion.
Below is a link on my carers tips from diagnosis to palliative care.
Please read this to create greater awareness of what the world is facing.
https://www.dhirubhai.net/pulse/carers-tips-looking-after-loved-one-dementia-deanna-mastellone/
Carers responses to my posts and articles on social media from around the world
https://www.dhirubhai.net/pulse/carers-responses-my-posts-linkedin-dementia-facebook-deanna/
I have also contacted the following organisations 10 August 2019 and sent them this link
United Nations via email and on Facebook
Commonwealth nations via email
African nations via email
ASEAN nations via email Facebook
South American nations via email
Royal college of GPs UK via email and Facebook
Royal Australian College of GPs via email and Facebook
American College of Physicians via email
American College of Physicians via email
This is their response, IF you want things to change in America, write to your local Congressman and make it happen! Ask for a reply and follow up with phone call. Only by asking for their help and the services you need and want, will you make it happen.
If everyone sends one email and follows up for a response, things will change! It will force them to listen and take action. People power is what we need.
Sure politicians and public servants are experts at fobbing us off. I collect their responses to file 13, going nowhere. But I never give up.
Of course there are a number who are very proactive, provide enormous assistance and support.
We all must work together to make this world a better place for everyone.
I wrote to WHO in August 2019 and they updated their dementia facts in September 2019
https://www.who.int/features/factfiles/dementia/en/
WHO Fact 5: Carers of people with dementia experience high strain Updated September 2019
Caring for a person with dementia is overwhelming for carers. The stresses include physical, emotional and economic pressures. Carers require support from the health, social, financial and legal systems.
Thursday 7 November 2019
Keyboard warrior strikes again! I wrote to the following
Princess Mary of Denmark
PM Boris Johnson
Uk Health Minister
American Secretary of Health
And sent them my speech in Rome at the global dementia conference 15.10.19 on YouTube, plus my articles - carers cheat sheet, an ideal carers world and my carers tips for looking after a loved one with dementia. It won’t happen overnight but it will happen.
22 November 2019 I wrote to the MD of the Australian Cruise Line Association and requested they ensure all their cruise line members are aware of Dementia Australia Friends of Dementia.
https://www.dementiafriendly.org.au/user/register
The MD replied "We will certainly mention this to our cruise lines in our upcoming committee meetings, and share the link"
My response "Many thanks for your kind reply. That would be wonderful, this will help all carers who look after their loved ones with dementia who travel on cruises. Creating this much needed awareness will be an enormous assistance for everyone."
26 November 2019 I wrote to the United Nations Human Rights High Commission as well as the World Health Organisation re our Global Dementia Humanitarian Crisis
2 February 2020 I wrote to every NSW MP all 134 of them re our global dementia humanitarian crisis and received this reply
3 March 2020 I wrote to Bill Gates at his Foundation re our global dementia humanitarian crisis
Another Royal Commission on Aged Care in 2 years time
To assess all recommendations implemented and iron out further issues that were not addressed.
https://m.seniorsnews.com.au/news/carers-small-voice-to-be-heard-in-big-dementia-wor/3835136/
Huge Honour and am determined we change the world for all carers.
At first I declined as I’m drowning in so much debt. Not from extravagant living but from sacrificing everything to take care of my mum for 6 years and unjust NSW land tax.
It was much too important to miss ?? a once in a lifetime opportunity, that I would regret for the rest of my days, if I did not attend. Qantas does not fly to Rome, so could not use my FF points, have booked and paid for my flights. Confirmed with my family in Rome and Florence I stayed with them.
After my speech in Rome 15.10.19 all the attendees said to me “You will speak at the United Nations in New York, you have so much passion and determination. What an inspirational speech.”
Which is my dream, to protect all carers around the globe, change the world and gain global media attention on my carer strategies
Plus they want me to attend and speak at another conference to be held in June 2020 in Barcelona. I will attend Barcelona even if I have to sleep in a tent as I have no family in Spain.
https://frontiersmeetings.com/conferences/dementia
I want to inspire others at the conferences, so together we can change the world for all carers and protect all our futures.
14-15th October 2019 Dementia Conference Rome
There are attendees/ speakers from all over the globe, Egypt, Nigeria, Germany, China, India, UK, Italy, Thailand and 2, including me from Australia, Singapore, New Zealand, USA.
All their speeches were fascinating and how each of them is researching dementia across the globe at various universities.
They all had various research methods, scientific studies and methodology. Some are professors, molecular biochemical and biochemists. Some are doing stem cell research, genetic structures, molecular research, looking at sleep deprivation and the deterioration of the brain, learning another language and how this can improve the cognitive function of the brain, the connection between diabetes and dementia.
Some use mice or flies for their research.
One spoke of how important sleep is and how lack of sleep and sleep apnea this affects the brain.
Another how insulin affects the brain. With dementia, the brain does not absorb sugar even though they crave it and want to eat it all the time.
Another was studying how the molecules are liquid and then harden and cannot be removed.
Another the structure of molecules and how they change. So they all used control groups and experiment groups to measure their findings and determine the decline or improvements.
Another discovered that using nasal spray with particular molecules can help the brain recover.
Each one, has a unique perspective of how to solve the elusive answer to the puzzle of dementia and working hard to find a treatment / cure.
I had no idea how many across the globe are searching for the answers. It gives me hope so much amazing research is being done and they are having positive results in their findings but sadly it is still a long way off.
They all agree treating the symptoms is not the answer. To find how and why the cells work and destroy the brain is the answer but it is a long way away
They all had graphs and charts and scientific formulations, magnified cells in various stages of research.
I feel so honoured to be amongst such distinguished professors in their field.And then there is me, Mine of course is nothing like theirs. We cannot wait for a cure, because so many carers lives are being destroyed as carers are taken for granted, forgotten and ignored. And I’m determined to change this and one day I will speak at the United Nations in New York.
My speech in Rome 15.10 19 on YouTube
https://www.youtube.com/watch?v=1FrXlQg0V40
2020 have been invited to speak at numerous global Dementia Conferences. I want to speak twice at all the conferences as I also want to talk about what it means to be a full time carer, as no one understands, unless they have lived it. With the coronavirus the world is on hold for the moment.
Barcelona June 2020
This goes completely against my grain, taken courage to set this up. Happy to fund raise for others and I have raised a lot of money over the years for charities and good causes but not for me.
Unfortunately I cannot afford to self fund to attend even $5 or $10 would be wonderful. Thank you for your support
https://www.gofundme.com/manage/to-speak-re-carers-3-global-dementia-conferences
Pioneer in dementia coaching and creator of the first business model of dementia care; I am a master dementia coach, dementia innovator, author, keynote speaker. Visit me at ICAcares.com/
5 年You are my hero, Deanna.