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Real Stories from Real People on My Aged Care – audio

We’ve prepared a series of interviews to show how older people with disability are struggling to get the support they need under the aged care system. These are real stories from real people that clearly demonstrate why we need to be advocating for change. Please take the time to listen and help us by sharing the links with as many people as you can.

A special thank you to Stephen Jolley who recorded and edited these interviews to help support our campaign.

Please note that these interviews were recorded in 2016 and as such, some of the information referred to in the interviews may no longer be current.

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New Continuity of Support Information

New Continuity of Support information has been released by the Commonwealth Department of Health. The Continuity of Support program will support people aged 65 and over, and Aboriginal and Torres Strait Islander people aged 50 years and over who are receiving state and territory funded disability supports and therefore not eligible for the NDIS. These arrangements are designed to ensure you receive support that is consistent with the support you were receiving before the NDIS rolled out in your area.

Continued support will be provided by a new Commonwealth Continuity of Support (CoS) Program administered by the Department of Health. Phasing arrangements begin from December 1, 2016 and continue in stages depending on where you live, with full implementation across the country by June, 2019.

The Department of Health will be releasing a Continuity of Support manual and guidelines shortly. Up until now there has been very little information available on how Continuity of Support will be administered and how it will affect people’s programs as they are transitioned out of their current state and territory support packages.

The new details at least provide some certainty in how CoS will be managed. Current support arrangements will continue with new contracts to be developed with the Department of Health. Significantly, the details also provide certainty for clients living in group homes. They will be able to remain where they are under CoS: “This includes clients who are living in a house where there are also people under the age of 65 who will be receiving support under the NDIS.”

Continuity of Support will cover 8500 clients around the country once it is fully implemented. We will have to wait for the guidelines to be released to find out further details on support arrangements – the devil is always in the detail. The following link on the Department of Health website provides general details on the program: continuity of support programme

For anyone concerned about these arrangements and to ensure your voice is heard in the development of the new support arrangements, it’s important that you contact the federal ministers’ offices below:

Responsibility for the Department of Health and My Aged Care

Minister for Health and Aged Care, Sussan Ley
Suite M1 41, Parliament House Canberra ACT 2600
Phone: (02) 6277 7220
Email: Minister.Ley@health.gov.au

Assistant Minister for Health and Aged Care, Ken Wyatt
Parliament House, Suite R1 16, Canberra ACT 2600
Phone: (02) 6277 4707
Email: Minister.Wyatt@health.gov.au

Responsibility for the NDIS

Minister for Social Services, Christian Porter
PO Box 6022
House of Representatives
Parliament House
Canberra ACT 2600
Phone: (02) 6277 7560
Email: christian.porter.mp@aph.gov.au

Assistant Minister for Social Services and Disability Services, Jane Prentice
PO Box 6022
House of Representatives
Parliament House
Canberra ACT 2600
Phone: (02) 6277 4426
Email: jane.prentice.mp@aph.gov.au

The NDIS website includes some general information on continuity of support, which can be accessed here: NDIS disability continuity of support

Bilateral Agreements between the Commonwealth and state and territory governments on the implementation of the NDIS, including details on Continuity of Support can be found on the Council of Australian Governments (COAG) website

Tale of two very different systems

Source:
The seniors Newspaper
Wednesday, 27th April, 2016

South Australian Senator Nick Xenophon has thrown his support behind the push for fairer treatment of people with disabilities under the aged care system.

Senator Xenophon cited the case of SA woman Valerie Mudie as an example of the problems with the age cut-off.

Ms Mudie, 70, has been blind since her early 30s and faces having to access support through the aged care system, which she says is not equipped to help people with disabilities to remain independent through supports such as guide dogs.

“(There could be) two blind people on a street corner, both 66 years of age, both with guide dogs”” she wrote in a letter to Senator Xenophon.

“One is accessing full support from the NDIS – that person is not means-tested and all services are free. They do not have to co-contribute towards any costs.” “This person also receives full cover for all the costs associated with the guide dog and vet bills and dog food costs are covered.” “The other person, accessing services through My Aged Care, is already probably paying towards a home care package, is also paying the costs associated with his guide dog, is means-tested and has none of the specific disability supports on offer to help him maintain an independent lifestyle.”

Senator Xenophon said he would make representations to Social Services Minister Christian Porter on the issue.

“It is important people aren’t left worse off by the roll-out of the NDIS,” he said. “That clearly wasn’t intended, and this anomaly needs to be fixed as soon as possible.”

Seniors organisations campaigned strongly on the NDIS age cut-off before the first pilots began in 2013.

Lori Grovenor attempts to navigate her kitchen in her wheelchair, which makes it impossible to open cupboards or move freely.

Lori Grovenor from Port Stephens in NSW started the Not Damn Interested in Seniors Facebook group after her own experience left her unable to access her kitchen or to get help with modification.

Lori, 70, who is blind and uses a wheelchair, said she was promised she would be no worse off under the aged care system. She called My Aged Care last July to have an assessment and arrange modifications so she could use her kitchen, which is inaccessible in her wheelchair.

After six months she had heard nothing, so called again, only to be told there was a 12-month waiting list for modifications.

“I made a complaint but was told there were people worse off than me.” “So we started the Facebook group and then I got a call to say they were coming out to do the assessment.”

The cost of the modifications was estimated at $16,000, of which the government will pay up to $10,000. Lori must contribute the remaining $6000 up-front. No repayment plan is available.

“If I was under 65 I wouldn’t have to pay anything. They would come out and I would be able to choose who I want to do the work.” “What do we do now? Have access to the kitchen or eat?”

The NDIS can fully fund home modifications where “due to the impact of the participant’s disability, the participant or their carers are unable to reasonably access and use frequently used rooms and spaces using standard fixtures and fittings”.

See Lori’s Facebook group at Lori’s Facebook

NDIS age cap leaves those over 65 without adequate support

14th March 2016

Independent Senator for South Australia Nick Xenophon says anomalies and loopholes in the National Disability Insurance Scheme are leaving many Australians worse off with the NDIS.

Senator Xenophon spoke to the media today with SA resident Valerie Mudie, aged 70, who has been blind since her early 30s as a result of Retinitis Pigmentosa.

Ms Mudie contacted Senator Xenophon because many disabled people over age 65 will have no support from the NDIS, because the scheme excludes those who are over 65 at the time of its commencement, or who acquire a disability after turning 65.

In a letter to Senator Xenophon, Ms Mudie describes the situation as this:

I contacted your office today regarding the many disabled people over age 65 who have no support from the NDIS and no disability support in My Aged Care, because they would be aged 65 or older at the time of the NDIS roll out. Instead this group of people are being shunted into My Aged Care and unlike those within the NDIS will have to pay towards any supports they need, they will also be means tested, unlike those within the NDIS. While Home Care packages within My Aged Care (MAC) are important for many, there are no specific disability supports to help individuals who want to be independent, who want to be out and about and connected with their community. Most supports within My Aged Care are aimed at the frail aged and keeping people comfortable in their home.

The latest news heard via the grapevine, is that now the Government will be forcing more extra charges on seniors with a disability. It seems if a disability agency should receive Government funding, that agency will now be required to ask anyone over the age of 65 to contribute toward services they require, this could be an hourly fee per service, though not yet confirmed what services or what fees will attract a fee. If people in this age group are already paying towards a Home Care package through MAC, they will not be able to find extra money to pay a disability agency for services as well, when it comes to food on the table, paying a medical bill, finding money for a disability service will probably will not be a priority.

Ms Mudie set out a telling example for those who are vision impaired in her letter:

Two blind people on a street corner, both 66 years of age, both with guide dogs. One individual is accessing full support from the NDIS, that person is not means tested and all services are free, they do not have to co-contribute towards any costs. This person also receives full cover for all the costs associated with the guide dog, vet bills and dog food costs are covered.

The other person, accessing services through My Aged Care is already probably paying towards a home care package, is also paying all the costs associated with his/her guide dog, is also means tested and has none of the specific disability supports on offer help him or her maintain an independent lifestyle and, in the future, if the new flagged fees for service comes in, this person may also be paying an hourly fee if they require services through an agency. What makes one person more worthy of receiving support than another?

Senator Xenophon said: “The NDIS is a great program that’s deserving of full support from both government and the community. But it is important that people like Valerie aren’t left worse off by the rollout of the NDIS – that clearly wasn’t intended, and this anomaly needs to be fixed ASAP.”

Senator Xenophon will make representations to Social Services Minister Porter on behalf of Ms Mudie and others facing a similar scenario.

Press release from Minister Ley re aged care

THE HON SUSSAN LEY MP
MINISTER FOR HEALTH, MINISTER FOR AGED CARE, MINISTER FOR SPORT

The Turnbull Government is committed to delivering a plan to create a consumer-driven market approach to aged care, one which can also protect special needs groups and work in geographic areas where it is not always practical for providers to be ‘on the ground’.

Through our integrated approach to reform, we are also committed to supporting a diverse range of providers to be responsive to the care needs of older Australians.

The 2016-17 Budget continues to support this commitment, with an overall investment of more than $17 billion in aged care – an increase of $1 billion on last year and up about 25 per cent since the Labor Government left office.

We are providing an additional $102.3 million over five years to improve aged care services in the bush.

As a Member of Parliament representing some of Australia’s most remote communities, I am passionate about ensuring our elderly can remain in these towns for the rest of their lives, in comfort and with the support they need.

You and I know a key part of ensuring older Australians live a happy life into their later years, is allowing them to remain in the community they’ve known for much of their lives, close to family, friends and facilities.

Our Government will also increase the viability supplement rate paid to remote residential services and some special needs services. The most recent Census data will now be used to classify providers’ remoteness to determine their funding, rather than the outdated system based on old data.

Around 250 mainstream, 100 multi-purpose services and 7000 home care packages will benefit. We are also allocating $137 million for the My Aged Care contact centre, to keep up with the huge volume of calls and correspondence now coming in, from people looking to be more informed about their aged care options.

I also want to ensure, as providers, you have a funding system that provides the certainty you need to run your operations with confidence. I want to emphasise that the overwhelming majority of operators do a great job and are doing the right thing.

However I am concerned the current Aged Care Funding Instrument (ACFI) model is too complex and not always clear about what can be claimed.

With 2015-16 already on track to see one in eight ACFI claims judged as inaccurate, there is a clear need to restructure the way ACFI is assessed.

Without action, this will see the ACFI budget blow out by an additional $3.8 billion over the next four years, despite there being no correlating increase in frailty to justify the increase.

We know how concerned the sector is about reform in this area, so we will consult with you and seek advice on ways to strengthen how care funding is determined.

This will include looking at separating assessment from providers and having it done by a third, independent and impartial party.

Importantly, the highest levels of funding will go to those with the highest needs.

These important reforms will also see the Turnbull Government’s investment in residential aged care increase at a fair, sensible and sustainable 5.1 per cent per year over the next four years.
We are committed to working with you to get this right and to transition smoothly and cautiously to the best model possible.

We are entering a new era in aged care in this country. The Aged Care Sector Committee Roadmap for Reform will guide the way.

I look forward to continuing to work together to deliver the best outcomes for older Australians, no matter where they live.

Kind regards,
Sussan Ley

Sample letter

*your name*

*street number and street name*

*city, town, postcode*

 

 

*current date*

 

 

 

The Hon. Jane Prentice MP 

Assistant Minister for Disability Services

PO Box 6022

 House of Representatives

CANBERRA ACT 2600

 

 

Dear Minister Prentice,

 

Re: Seeking equality of support for older people with disability

 

As you will be aware, people with disability who are over the age of 65 are ineligible for the National Disability Insurance Scheme and must instead seek to access services through My Aged Care. The Australian Government has continued to reassure older people with disability that they will receive an equivalent level of support through My Aged Care, but we are fast finding out that this is not the case.

 

Where is the system failing?

 

  1. Lack of information

Federal and state governments continue to inject significant amounts of money into projects that are designed to inform people with disability about the NDIS. But there has been absolutely no information provided to people with disability who are over the age of 65 to inform them about My Aged Care as it relates to the specialist support needs of people with disability.

  1. Lack of empathy and disability awareness

As disability is the core business of the NDIS, staff at the National Disability Insurance Agency typically have a high level of empathy and disability awareness. The same cannot necessarily be said for the staff at My Aged Care, who are used to dealing with older people and not people with permanent and profound disability.

  1. Lack of equality

The current arrangements under My Aged Care, unlike those of the NDIS, require older people with disability to make co-payments towards any services or supports they wish to access. While these co-payments were originally designed to be dependent on an individual’s income and assets, it appears that this policy is not being honoured. Furthermore, services and supports that are required by people with disability can be far more cost-prohibitive than those of the average older person, meaning that their co-payments would also be significantly higher.

 

As a matter of interest, I draw your attention to the following policy directives outlined in the National Disability Strategy 2010-2020; which originally underpinned the introduction of a National Disability Insurance Scheme:

 

“Policy Direction 2: A disability support system which is responsive to the particular needs and circumstances of people with complex and high needs for support.

Policy Direction 3: Universal personal and community support services are available to meet the needs of people with disability, their families and carers.”

 

In order for Australia to be considered to be meeting its international human rights obligations under the Convention on the Rights of Persons with Disabilities, these policy directives must be implemented in a way that meets the needs of all people with disability – not just those who are under the age of 65. It is also worth considering that many older people with disability, if provided with an adequate level of support, would continue to make a valuable contribution to their local communities. Failing to address these problems will therefore result in a loss to the economy, as well as a loss to the individual.

 

In closing, I urge you not to disregard this matter, but to give it the attention that it truly deserves and ensure that it is investigated at the next meeting of the Disability Reform Council.

 

Yours Sincerely

 

 

 

*your name*

Briefing Paper

NDIS (Not Damn Interested in Seniors) = My Aged Scare!

Advocating for equality for over 65s

 The background:

In 2013, the government commenced rollout of the National Disability Insurance Scheme (NDIS) – a lifetime scheme of care and support for people with disability. But people who acquire a disability after the age of 65, or are over 65 when the scheme rolls out in their area are not eligible for the NDIS.  These people are instead expected to access the support they need through the aged care system, through a gateway called My Aged Care.

The problems:

  1. Lack of information

Many people with disability have had no interaction with the aged care system and are largely unaware of how it operates. Federal and state governments continue to inject significant amounts of money into projects that are designed to inform people with disability about their rights under the NDIS ,but there has been no information provided to people with disability who are over the age of 65 to inform them about My Aged Care as it relates to the specialist support needs of people with disability. As a result, many people are falling through the cracks.

  1. Hefty co-payments

Under My Aged Care, older people with disability are asked to make co-payments towards any services or supports they require. This requirement is unique to My Aged Care and does not apply to people accessing supports under the NDIS. Although co-payments were originally intended to be dependent on an individual’s income and assets, it appears that this policy is not being honoured. The services and supports that are required by people with disability can also be far more cost-prohibitive than those of the average older person, making their cost of living significantly higher.

  1. Lack of understanding of the specialist needs of people with disability

The aged care system was set up to accommodate the needs of people experiencing deteriorating health due to aging– not people with permanent and profound disability. As disability is the core business of the NDIS, staff at the National Disability Insurance Agency typically have a high level of empathy and disability awareness. The same cannot be said for the staff at My Aged Care who are largely unfamiliar with the broad spectrum of needs with which people with disability may present . 

The solutions:

  1. Help us raise awareness

The NDIS is constantly being discussed in the media and in the community, but there has been no focus on those people who are ineligible for the scheme and are fast falling through the cracks. Help us shine a light on the injustices of the current support system and build a solid foundation for future change.

  1. Help us access information

Knowledge is power. Older people with disability need to have sufficient information available to enable them to exercise their rights. Help us lobby the government to ensure that accurate and timely information is provided to people with disability who are over the age of 65 so they can better navigate the current support system. 

  1. Help us achieve equality

Help us lobby for the introduction of measures that would

promote greater equality for older people with disability in accordance with the following recommendations:

  • All individuals who were born with, or who acquired a disability prior to the age of 65 should be grandfathered into the NDIS.
  • An independent appeals process should be established to allow for discretionary decisions to be made in allowing people who have acquired a disability after the age of 65 entry into the NDIS (where it can be demonstrated that their support needs are not being met through the aged care system).
  • The rules for co-payment under My Aged Care should be reviewed, with an exemption being applied to specialist services and supports that are uniquely required by people with permanent and profound disability.
  • Additional resources should be allocated to building the capacity of staff working across the aged care sector to enable them to better respond to the specialist needs of people with disability. 

The obligations:

The Australian Government is a signatory to the United Nations Convention on the Rights of Persons with Disabilities and is therefore bound by the obligations that it establishes. The steps to be taken to implement the Convention at a national level have been articulated in the National Disability Strategy 2010-2020, which has been endorsed by the Council of Australian Governments. It was this strategy that first underpinned the introduction of a National scheme of lifetime care and support for people with disability and the Strategy sets out to achieve the following two outcomes in this regard:

  1. “A disability support system which is responsive to the particular needs and circumstances of people with complex and high needs for support.”
  2. “Personal and community support services are available to meet the needs of people with disability, their families and carers.”

In order for Australia to be considered to be meeting its international human rights obligations under the Convention on the Rights of Persons with Disabilities, there must be equality of support for all people with disability, regardless of factors associated with age.