Global Strategies

• 1: Legal Protection and Recognition of all full time unpaid Carers
• 2: Public Servants across the world must be accountable
• 3: Taxation needs to be fair, just and consistent
• 4: National Carers Card
• 5: Assessments by ACAT - no age limit - Australia
• 6: Carers Advocates
• 7: Carers App
• 8: Carers Hotline 24/7 Phone Number
• 9: Carers Only Obudsman
• 10: Children must be included in the Definition of Carers
• 11: Create a Carers Affairs - like Veterans Affairs
• 12: Disabled Parking Cards use by all Carers
• 13: Employment Strategies
• 14: Euthanasia we should have a choice
• 15: Every Location should have a cheat sheet of their carer services (Update)
• 16: Funding provided for all local support carers groups
• 17: Homecare Packages
• 18: Hospice and Palliative care at home
• 19: Maintain consistency for dementia patients with the same carers
• 20: Mandatory Online Dementia Training for all Public Servants
• 21: Mandatory Training for all local Doctors on Dementia
• 22: Paid Carers should not be casual be provided with lunch allowance
• 23: Rehab specialists trained in looking after Dementia Patients
• 24: Respite care - able to book in advance for holidays, tailor to family needs
• 25: Shopping Trolley for adults
• 26: Stop Charities ringing for Donations
• 27: Superannuation for all carers
• 28: Tailor homecare packages to individual family needs
• 29: TV Advertisements like they did with Aids and brain donations
• 30: Update forms with employment details to include full time unpaid carer
• 31: Video training at Carer Support Groups on Personal Care
• 32: Weekly Carers Allowance should be the same as unemployment benefits
• 33: When we cannot access a homecare package, we must be able to

1 - Legal Protection and Recognition of all full time unpaid Carers

The legal system does not even recognise full time unpaid carers - all our endless sacrifices and relentless care is completely irrelevant.

Courts need to acknowledge the role and sacrifices of carers in families.

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 must be recognised and protected by the courts from greedy siblings.

Grief protection, they should not be forced to sell the family home for two years.

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

2 - Public Servants across the world must be accountable

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.

3 - Taxation needs to be fair, just and consistent

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 $77 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.

https://www.theguardian.com/australia-news/2018/dec/13/ten-companies-pay-45-per-cent-of-all-corporate-tax-in-australia?CMP=Share_iOSApp_Other

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.

https://www.businessinsider.com.au/uber-makes-785-million-in-australia-in-2018-but-pays-just-8-5-million-tax-2019-5/amp

Why is it allowed so many high end individuals get away with paying little to no tax !

https://www.theguardian.com/australia-news/2019/oct/29/company-of-anthony-pratt-australias-richest-man-pays-virtually-no-tax

Rich Australians lobby tax office to prevent increased scrutiny of their businesses.

https://www.theguardian.com/australia-news/2019/nov/13/rich-australians-lobby-tax-office-to-prevent-increased-scrutiny-of-their-businesses?CMP=Share_iOSApp_Other

How to pay $20 million tax on more than $1 billion in revenue — ask Amazon Australia

http://amp.abc.net.au/article/11719232

ATO data reveals almost a third of big companies still not paying tax in Australia

https://www.theguardian.com/australia-news/2019/dec/12/ato-data-reveals-almost-a-third-of-big-companies-still-not-paying-tax-in-australia?CMP=Share_iOSApp_Other

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

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.

1. Retirees, do not pay land tax
2. Dementia full time carer, zero land tax
3. 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!

4 - National Carers Card

We need a National Carers Card so all carers 1 in 10 are acknowledged for what they do for our community.

This National Carers Card should provide all carers in Australia with discount movies, theatre, transport and medicare only bills with doctors appointments.

This would make a gigantic difference to every single full time carer, who sacrifice everything to look after a loved one.

We are saving Australia alone per annum for all our selfless unpaid care $77 billion. Every carer should be acknowledged and recognised for what they do, with a National Carers Card.

People don’t understand what it is to be a full time carer for an elderly parent with Dementia; they think we are having a holiday. We work so very hard taking care of them and suffer extreme exhaustion and burnout.

Did you know 800,000 Australian carers are on a pension and 2 million other carers are not. Did you know 1 in 10 Australians are carers?

For those who do not receive a pension there is a carers allowance that is means tested, you are not entitled to it if you earn over $250k pa, it’s a very well kept secret.

It is $63.50 a week which is a $1 an hour for taking care of a loved one, 7 days a week

The Government cannot destroy our assets, expect us to pay for everything, give us no help, nor tax concessions, when we have given up our careers, spent all our super, to take care of a loved one, when we are close to 60 and cannot return to our former careers.

We need a holistic approach to this 21st Century dilemma, as our population ages with so many living so much longer into their 90’s and needing full time care, this will continue to affect more of the population

We cannot destroy the caring generation who will be left with huge health problems and many more dependent on the welfare system because the gigantic impact and long term consequences were not considered.

All carers are suffering with financial worries. This National Carers Card should provide all carers in Australia with discount movies, theatre, transport and medicare only bills with doctors appointments.

Stress of carers is enormous without the additional financial worries. You have to think for them, run their whole lives.

Carers are saving the country $77 billion a year by looking after their loved one (s) because they have given up their life, their career and made many sacrifices including using all their super to pay for bills and living expenses.

A few ask me when am I going to get a job? I have never worked so hard in all my life.

Few have any understanding of how hard it is being a full time carer unless they have lived it too.

Mum could do nothing for herself, not even turn on and off the tv, turn on and off the lights, I had to shower n dress her, she was double incontinent, it’s relentless, 7 days a week.

Mum cannot remember how to put her makeup on. She cannot dress herself if she does, puts them on back to front, on top of her pyjamas, all mixed up.

It wears you out being so patient. Answering the incessant endless repetitive questions. It absolutely drives you nuts

You do become resentful, carers are always tired, always late, always come last. We have no life of our own.

Overwhelmed, we feel like the walking dead, being a carer sucks the life out of you.

I am too tired to cook, to ring my friends, to go out as I am constantly worn out. By the time you do all the looking after. There’s nothing left for you to have a life. It only gets harder as time goes by as they deteriorate. At times am too tired to sleep at night.

Feel like it is contagious, my words become muddled up.

We need greater awareness, recognition, compassion and understanding.

Thank you for signing this petition to help all carers in Australia and create a National Carers Card

If you have not signed this petition could you be so kind to sign it.

https://www.change.org/p/christian-porter-mp-aph-gov-au-every-full-time-carer-who-does-not-receive-a-pension-should-have-a-national-carers-card

Thank you

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 ???

5 - Assessments by ACAT - no age limit - Australia

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

6 - Carers Advocates

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 Loved One need to function comfortably and smoothly through the day.

Then organise the assistance carers need.

7 - Carers App

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?

8 - Carers Hotline 24/7 Phone Number

Carers Hotline 24/7 Phone Number

To access urgent assistance and assistance with Homecare Packages, other support services

9 - Carers Only Obudsman

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

10 - Children must be included in the Definition of Carers

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

11 - Create a Carers Affairs - like Veterans Affairs

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.

https://www.afr.com/property/women-over-55-years-now-the-fastest-growing-homeless-people-in-australia-20180820-h146r2

12 - Disabled Parking Cards use by all Carers

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.

13 - Employment Strategies

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

http://amp.abc.net.au/article/11724368

More carers’ leave may help Australians look after elderly parents and stay in work

https://womensagenda.com.au/latest/more-carers-leave-may-help-australians-look-after-elderly-parents-and-stay-in-work/?fbclid=IwAR1h04v8rDz9j-7hGMH93VPTu88PIQ5VERfWs7nTKnp5068HW1Rgk-7uRrY

14 - Euthanasia we should have a choice

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. http://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

15 - Every Location should have a cheat sheet of their carer services (Update)

16 - Funding provided for all local support carers groups

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

17 - Homecare 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.

18 - Hospice and Palliative care at home

When they are dying and cared for at home - can be admitted to a hospice of have palliative care at home

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.

19 - Maintain consistency for dementia patients with the same carers

Maintain consistency for dementia patients with the same carers

• Consumer model where consumers keep carers, no matter which provider
• Establish brokerage between service providers
• Service Providers work together and ensure consistent training for all staff

20 - 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.

21 - Mandatory Training for all local Doctors on Dementia

All local doctors GP’s are trained on dementia and services

My Aged Care homecare packages and ACAT

22 - Paid Carers should not be casual be provided with lunch allowance

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

23 - Rehab specialists trained in looking after Dementia Patients

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

24 - Respite care - able to book in advance for holidays, tailor to family needs

Respite care - able to book in advance for holidays, tailor 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

https://www.abc.net.au/news/2019-10-25/research-shows-benefits-of-respite-care-on-aged-care-sector/11635246

25 - Shopping Trolley for adults

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.

26 - Stop Charities ringing for Donations

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.dailymail.co.uk/news/article-3083859/Shame-charities-drove-Olive-death-Organisations-exploited-pensioner-s-kind-heart-admit-sending-begging-letters.html

https://www.theguardian.com/society/2015/sep/23/charities-ban-fundraising-public

27 - Superannuation for all carers

**
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

28 - Tailor homecare packages to individual family needs

Tailor homecare packages to individual family needs

• Should not be the same price for a Lvl 1 and Lvl 4 homecare package. Each level different price
• Lvl 4 homecare package completely inadequate for palliative care

29 - TV Advertisements like they did with Aids and brain donations

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

30 - Update forms with employment details to include full time unpaid carer

On all forms ‘are you employed’ should include ‘full time unpaid carer’.

Full time carer should be included, under employment details, instead of retired, unemployed, full and part time employment, to create greater awareness and service for full time unpaid carers

31 - Video training at Carer Support Groups on Personal Care

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

32 - Weekly Carers Allowance should be the same as unemployment benefits

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 2019 and said they are waving the unjust debt of my carers allowance of $372.00 am thrilled.

33 - When we cannot access a homecare package, we must be able to

When we cannot access a homecare package, we must be able to

Must be able to claim tax deductions for all care expenses including pull ups, paid carers, equipment – eg wheelchairs, activities with local seniors group

Must be able to claim hardship and assistance with our tax liabilities including NSW Land Tax