As home care packages become big business, older people are not getting the personalised support they need

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Many older Australians prefer to stay at home than enter residential aged care – but the process of securing home care is riddled with complexities.
From shutterstock.com

Lyn Phillipson, University of Wollongong and Louisa Smith, University of Wollongong

The Royal Commission into Aged Care has unleashed a spate of claims of system failure within the residential aged care sector.

Now, as the commission shifts its focus to care in the community, we’re also seeing claims of failure within the home care packages program.

This scheme aims to support older people with complex support needs to stay at home. But what we’ve got is a market-based system where the processes involved in accessing support and managing services are making it difficult for vulnerable older Australians to receive the care they want.

If this system is to be workable, older people need better information and more personalised supports to enable choice and control – especially those with complex needs.




Read more:
Would you like to grow old at home? Why we’re struggling to meet demand for subsidised home care


Consumer directed care

A growing number of older Australians are receiving home care subsidised by the government. During the 2017-18 financial year, 116,843 people accessed home care packages.


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From July 1 2015, all home care packages have been delivered on what’s called a Consumer Directed Care basis.

This means that, theoretically, home care providers must work with consumers to design and deliver services that meet their goals and care needs, as determined by an Aged Care Assessment Team.

However, in reviewing the active steps outlined in the government pathway to access a package, we must consider the person who is navigating this path.

They are frail older people with complex support needs, often seeking help at times of crisis. These include the growing number of older Australians living with multiple medical conditions and complex age-related syndromes such as dementia.




Read more:
Explainer: what is a home care package and who is eligible?


After a person has been assessed, they will receive a letter informing them they are eligible. However, due to long waiting lists, this does not provide them with immediate access to care; most wait many months before they are actually assigned a package by My Aged Care.

When they eventually receive a letter confirming their package, the consumer will be approached by various service providers. They will need to sign a complex contract with their chosen provider.

If the consumer is feeling frustrated and confused during these early stages, this is only the beginning. The recent marketisation of home care means managing their own care requires going through impersonal, centralised provider systems.


The Conversation, CC BY-ND

People need clear information to choose a provider

The first thing people assigned a home care package need to do is choose a care provider.

There are now close to 900 different providers offering home care packages. This includes not-for-profits, as well as a growing number of for-profit providers competing for new business.


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In reality, however, few older people research different providers. Once they’re assigned a home care package, their name is placed on a centralised database accessible by all registered service providers.

The person then receives unsolicited phone calls from the sales teams of different providers, offering their services and trying to make appointments to come and visit. For consumers, this represents a shift from a familiar government model of care provision to a market model.

Research shows consumers often don’t understand consumer directed care, and this can leave them vulnerable to the forceful marketing tactics employed by some providers. It can also make negotiating a complex contract with legal, financial and personal implications very difficult.

Older people granted a home care package will be approached by different providers wanting their business.
From shutterstock.com

To make informed choices between providers, people need accessible information. There is currently insufficient information for older people and their families to compare services on indicators of quality (such as the number of complaints agencies receive, the training of staff, the types of specialist services they offer, and so on).

To address this gap, the government must commit to collecting and publishing data on home care quality. This would drive service improvement and increase people’s ability to make informed choices between different providers.

Service and administrative fees

To make informed choices, people also need to be able to compare services on the basis of price.

The average profit per client for home care package providers was A$2,832 in 2016-17, but there’s significant variability between providers’ fees.

For example, the use of people’s individual care budgets to cover administration or case management fees ranges between 10-45% of their total package.

High fees and administrative costs may reveal the profit-driven motives of a few unscrupulous providers.




Read more:
What is ‘quality’ in aged care? Here’s what studies (and our readers) say


Because of administrative fees, many people are spending a high portion of their individual budgets on case management to support their care.

While there’s evidence case management can provide clinical benefits for older people, in the context of the current home care funding model, it may also leave people with less money for direct care services than they need.

People need support to manage their packages

We’re currently looking at the experiences of people with dementia using home care packages. Unsurprisingly, we’re finding that while they are grateful for the services they’re receiving, they are having a difficult time managing their care. For some this may be due to their limited decision-making capacity, but for many, their choice and control is being limited as much by the service model.

For example, to enable providers to compete in the open market, many have adopted central 1800 numbers to support people to manage their services. This means if consumers want to change something, they are funnelled through this system.

Think about your own experience of service helplines, such as with telephone or energy companies. Now consider a woman with dementia who needs to call a 1800 number to change the time of her shower so she can see her doctor.

Rather than communicating with a local and known case manager, she now needs to speak to someone she doesn’t know and who is not familiar with her care needs.

Instead of facilitating choice and control, this demand on the consumer to constantly articulate their needs to unfamiliar people means many are frustrated, and some are even opting out of services.

How can we improve things?

The three words the government associates with consumer directed home care are choice, control and markets.

But the system doesn’t foster control. Although consumers technically have choices, the marketised and bureaucratic approaches of service providers make it difficult for consumers to articulate and receive support for their personal choices.

The processes, information and supports available to assist older people and their families are inadequate to facilitate the type of choices and control one might associate with “consumer directed” care.




Read more:
Seven steps to help you choose the right home care provider


There’s an urgent need to improve the processes for accessing timely home care packages, particularly for those with complex support needs. This includes the quality and accessibility of information, resources and decision-making tools.

There’s also a significant need for training, advocacy and impartial support for choice, particularly for people with limited decision-making capacity, such as those living with dementia.

Research and practice in aged care and disability in other settings provide extensive resources for person-centred planning and decision making which could be adapted for use in our home care system.The Conversation

Lyn Phillipson, NHMRC-ARC Dementia Development Fellow, University of Wollongong and Louisa Smith, Research Fellow at AHSRI, University of Wollongong

This article is republished from The Conversation under a Creative Commons license. Read the original article.

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Older Adults Are Still Likely Underestimating Cognitive Impairment in Their Families

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News release

 Study Finds Racial Differences in Reporting and Overall Trend of Underreporting Cognitive Impairment

An increasing number of older adults are reporting cognitive impairment in their families over the past two decades, according to a new study led by researchers at NYU Rory Meyers College of Nursing and East Carolina University’s Brody School of Medicine.

The study, which also finds ethnic and racial differences in reporting cognitive impairment, is published in Preventing Chronic Disease, a journal of the Centers for Disease Control and Prevention.

The aging population in the U.S. is growing rapidly, with the number of people age 65 and over in 2010 (40.2 million) projected to more than double by 2050. With the rapid increase in the aging population, the size of the population with cognitive impairment and dementia will continue to accelerate, highlighting the importance of identifying cognitive changes.

“Cognitive impairment may serve as a precursor to future dementia. Early detection of cognitive impairment can facilitate timely medical treatments, appropriate care planning, and prevention efforts,” said Bei Wu, PhD, Dean’s Professor in Global Health and director of Global Health & Aging Research at NYU Meyers, co-director of NYU Aging Incubator, and the study’s senior author.

The study sought to examine the trends of self-reported cognitive impairment among five major racial/ethnic groups from 1997 to 2015 in the United States. The researchers used data from the National Health Interview Survey, including 155,682 individuals age 60 and above in their sample. The large sample included people of a variety of races and ethnicities, including Asian Americans,  Blacks, Hispanics, Native Americans, non-Hispanic Blacks, and non-Hispanic Whites.

Rather than using a screening test or clinical examination to evaluate cognitive impairment, respondents were asked to report if any family member was “limited in anyway because of difficulty remembering or because of experiencing periods of confusion.”

The researchers found an increasing trend in self-reported cognitive impairment: the overall rate increased from 5.7 percent in 1997 to 6.7 percent in 2015 among older adults in the U.S. This finding may suggest that awareness of cognitive impairment, perhaps from heightened public attention to and interest in Alzheimer’s disease, has improved to some extent.

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When looking at each racial/ethnic group, however, the increasing trend was significant only among White respondents. In Whites, the rate of self-reported cognitive impairment increased from 5.2 percent in 1997 to 6.1 percent in 2015. Asian American, Black, Hispanic, and Native American respondents had higher rates of self-reported cognitive impairment than Whites, but these rates did not significantly increase from 1997 to 2015.

Regardless of the overall increasing trend, the rates of self-reported cognitive impairment were still low, which may suggest underreporting. The researchers note that the rates of self-reported cognitive impairment are much lower than the estimated prevalence of cognitive impairment. For adults 65 years and older, the rate of self-reported cognitive impairment was 6.3 percent in 2000 and 7.5 percent in 2012, while the estimated prevalence of cognitive impairment in the same age group was 21.2 percent in 2000 and 18.8 percent in 2012.

These findings underscore the need to further promote awareness of cognitive impairment, especially in minority populations. Different cultures hold different beliefs and perceptions of disease and aging. For instance, research has found that compared to Whites, minorities are less likely to seek treatment for psychiatric symptoms because of lack of access to care or due to stigma.

“Culturally specific health education is needed in individuals, family members, and healthcare providers to improve awareness and knowledge of signs and early symptoms of Alzheimer’s and other dementia,” said Huabin Luo, PhD, of East Carolina University.

In addition to Wu and Luo, Gary Yu of NYU Meyers coauthored the study.

Walking with my mother

Director Katsumi Sakaguchi’s newest film “Walking with My Mother”
Official selection of Tokyo International Film Festival 2014

Director Katsumi Sakaguchi captures the life of his mother, Suchi, 78 through film, as she lives with dementia and depression, coping with the loss of her daughter and then her beloved husband. In the film Katsumi documents a life of distress, frustration and grief as his mother tries to remain resilient against all the trials and tribulations that life has hurl against her. He captures his own feelings and emotions as he tries to understand the needs of his mother and his own, and to cope with the changes that life has brought for both of them. The film also showcases their travel back to Suchi’s hometown and the positive improvements that such a change brings.