Who decides if you are a carer? You? Or the Aged Care Facility?

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“Caring doesn’t stop when a parent enters aged care. It just looks different.”

Heather Thorne, former family carer.

State and Territory laws in Australia have restricted “visitors” to Aged Care Facilities – especially since Covid.

Those laws have changed over and over again.

For example, in early August, in Victoria, we are up to Care Facilities Direction no 39!!!

I lose count.

Most of those laws, for most of the time, seem to have allowed “visitors” who are actually “carers” of the people in the Facilities – and these types of visitors – carers – tend to be family members.

You visit because you care.

If you want to visit a loved one in Aged Care, I’m going to presume that you are going because you want to care for them.

The different types of care you might provide are described in my other post: “But what about Covid? Won’t visitors bring it in?”

You, who love your friend, partner, husband, wife, son, daughter, brother, sister, mum or dad very dearly – you know that you care for them. You know that you want to care for them.

You know that you care for them when you bring them goodies to eat and watch them eat them, and discuss how yummy they are.

You know that you care for them when you wash that woollen jumper carefully by hand, and bring it back nicely folded, and chat about the jumper and how good a purchase it was, 15 years ago.

You know you care for them when they quietly mention the fact that nobody came last night when they rang the call bell. Or the fact that they can’t reach the call bell. Or can’t turn on the t.v. Or can’t see the time.

You know you care for them when you complain to the Facility about things that aren’t quite right. Or things that are drastically wrong.

After 60 years, or more, you want to continue caring for each other, “until death do us part”, perhaps.

Who decides whether you are caring for your loved one?

So who gets to decide whether you are a “carer” or not? And who gets to decide whether you are allowed to visit, or not?

Victoria

Here’s the text of Victorian Care Facilities Direction no 39:

“(8) … a person may enter, or remain on, the premises of the care facility if:
(a) the person’s presence at the facility is for the purposes of providing care
and support for the resident’s physical or emotional wellbeing (including
mental health supports and support for people living with dementia);…

Note: this may include a person who is visiting to prevent harm to a person’s
mental or emotional health due to social isolation.”

Based on this Directions, who gets to decide if you are a carer?

You do. It’s for you to say what your purpose of the visit is.

Not the Facility.

Now it might be the case that the law requires the Facility to “take reasonable steps” to ensure that you are a “carer” (I am paraphrasing here. You must always read the actual text of the legislative order.) But all the Facility needs to do is ask you why you are visiting. You can say “I am visiting to prevent harm to my partner’s mental health due to social isolation. She told me she feels lonely and sad. She told me she misses me. So I am visiting her.”

Let’s look at Queensland, as a contrast.

Queensland

Queensland has a Residential Aged Care Direction no 3 which is effective from 23 July 2021.

Like Victoria, there’s an obligation on Facilities to take reasonable steps to ensure visitors are allowed to be there.

But look at the police attitude to this below. This doesn’t mean Facilities can ban visitors. It just means they have to say to themselves “Oh, this is Henry, Mary’s son. He comes 3 times a week to check on his Mum and see how she’s going. He brings care packs and food, and tells her about his life. He’s a nice chap and always sanitises and wears a mask. She talks about him all the time. Of course, that’s care.

Now Queensland has two categories of facility: non-restricted and restricted.

A person may enter a non-restricted residential aged care facility under this Part unless the person is prohibited from entering the residential aged care facility under paragraph 10.

Examples – A relative, friend, medical practitioner, hairdresser or attorney.

For a restricted residential aged care facility, it says a person can visit if:

the person’s presence at the premises is for the purposes of providing goods or services that are necessary for the effective operation of the restricted residential aged care facility, whether the goods are provided for consideration or on a voluntary basis; (cl 32(b))

or

the person’s presence at the premises is for the purposes of providing health, medical, personal care (such as hairdressing), pathology or pharmaceutical services to a resident of the restricted residential aged care facility, whether the goods or services are provided for consideration or on a voluntary basis; (cl 32(c))

or

the operator of a residential aged care facility has granted permission for the person to enter a restricted residential aged care facility for the purposes of maintaining continuity of care for a resident that cannot be delivered by electronic or non-contact means.

Example: A resident may require support from their primary care giver to eat their meals. (cl 32(g)).

Now Queensland’s laws on this issue aren’t great. They are poorly worded, in my view. They are less clear than Victoria’s. And they appear to give less recognition to the need for family members to provide care for residents that Facilities just can’t provide.

I think that giving the operators the ability to “grant permission” is a problem, because it arguable gives the Facilities a power to “block” someone who is actually providing continuity of care. I think Queensland should get rid of this clause. Based on what we know about the Facilities around the country, this clause is putting the welfare of residents in the hands of those who do not, sadly, act entirely in their best interests.

(And on that note, have a look at what the Royal Commission said about the necessity for families to provide care. They said that “informal carers are a critical element of the care system”.)

But still, Facilities don’t get to ban all visitors based on the above. If a facility questions you, you just have to assert that you fall within one of the above categories.

So if you want to visit your loved one in Queensland, make arguments based on the law – like clauses 32(b), (c) or (g). And I would also lobby the Queensland Chief Health Officer to consider the rights of residents to voluntary care as something that shouldn’t be determined by a Facility (Facilities can’t be objective – as discussed below).

But still, Facilities may do the wrong thing: they may assert power that they do not have, and ignore the facts.

Even the police take my word for it if I say I’m travelling for a permitted reason – like care

During the Victorian lockdowns, we have had permissible reasons to travel away from the home. For example, we have been permitted to travel to care for someone (that’s a paraphrase), or to do maintenance work on a country property.

Once or twice I have been stopped by police. They say: who are you? where are you going? why?

I told them who I was. I told them where I was going. And I told them why.

If I said “I am going to visit my Mum in an Aged Care Facility” or “I am visiting a friend who just had surgery” or “I am going to my house in [wherever] to do maintenance on the block”, they said “okay, off you go, have a nice day”.

They didn’t question my honesty. They didn’t ask for documentary proof. In fact, the mere mention of going to visit Mum in an Aged Care Facility could be enough for them to realise I am going to “care” for her.

So why do Facilities think they are better or more powerful than the police? Why do they think they can ignore the obvious purposes of visits, or refuse to accept our assertions that we are visiting for the purposes of care?

I speculate more on what might be motivating Facilities below. But the fact is, that Providers and Facilities are putting themselves in the position of “enforcers” in a way which goes way beyond what the police can do. I don’t think that’s lawful. And I don’t think that’s right.

So why should you get to decide if you are a carer, and not the Facility?

You are in the right position to decide

Generally speaking, people visit their loved ones in Aged Care Facilities because they care for them. They are not trying to harm them. And they earn no money by visiting them. They won’t make a profit, or build up a business, by visiting their loved one in the Facility.

All they get by the visit is the ability to care.

And maybe, just maybe, they also get cared for! Because in human relationships we get mutual benefits by caring for each other.

But that’s not a bad thing. And asking Mum to care for me doesn’t make her position worse. It makes it better.

So I’m in the right position to decide if I am caring for my Mum by visiting her.

(PS How crazy is it that I even have to say this? Isn’t it just common sense, people?)

You’d think it’s just common sense, that family members care for each other when they visit each other in Facilities.

But no, says the Facility, it’s not common sense. We want to pretend that nearly all family members are just visiting for fun. For no benefit at all. Kind of like the fun you might have if you go and watch a movie. You’re just going to entertain yourself. That’s why family members must be wanting to visit…

I wonder, what’s really going on here?

The Aged Care Facility is in a position of conflict

The problem is this: the Aged Care Facility is in a position of conflict.

What is in their interests? Is it the same as the interests of my Mum, or your husband, or sister, or son in Aged Care?

No, their interests are not the same.

The Facility’s interests include making a profit. Or funnelling excess funds into property investment. Or improving the salaries of the CEOs. Basically making money. And getting bigger.

Making money means putting in as few resources in as possible, and taking out as much money as possible (even if you re-invest it into property or other investments).

Making money means having your staff spend less time on things.

Like dealing with people that take up their time. People who aren’t employed by them. Sometimes time-consuming people that they can’t control.

Visitors can be pesky. They can be annoying. They can challenge the Facility. They can complain. They can ask for things to be improved.

And the Facility can’t control this stuff. Even though sometimes they might try.

I have experienced a CEO of a non-profit church based provider saying to me: “If you are not happy, your parents can leave.”

I have experienced a complaints manager of the Aged Care Quality and Safety Commission saying “If your parents are not happy, they can just leave.”

I have heard many stories of worse things.

I have heard about the police being called and turning up to the Facility, demanding that a visitor leave, simply because they were there caring.

I have heard about all sorts of accusations and bullying and harassment of visitors.

Again, an Aged Care Provider asked me not to “bully” staff by asserting that they had no legal power to detain my parents or put my mum into solitary confinement.

I said I will stop saying it when you stop doing it.

Sometimes visitors complain to the Aged Care Commission. Maybe the Commission doesn’t always take action, but it must be annoying for a Facility to receive such complaints.

The Facility may well have an interest in locking its doors and keeping out people who are not on staff. The staff would not last long if they lodged complaints every second day.

So the Facilities/Providers have an interest in refusing to acknowledge that you are a carer. They would rather call you a non-carer visitor.

What other reasons can you think of to show that a Facility is in a position of conflict? That they have an interest in keeping family members out?

The Facility you deal with wants to pretend that you don’t exist. They want to put a sign up on the door “no visitors”, and tell you that “it’s the law” or “it’s our policy” that you are not allowed in.

What they are saying is that you are not a carer. And you are not entitled to provide care for your loved one by visiting them.

They are claiming to be gatekeepers, controlling the lives of your loved ones.

What to do if a Facility asserts or pretends that you are not a “carer”.

I am building up these web pages over time. For a start, go to: our Legal Actions and Redress page and look at this article. It’s just a start. There are more things you can do. But you can start by yourself, by using the right language when you approach your Facility/Provider. And you can engage a lawyer to look at your case. Of course you can go to the press or your local Minister too. But I think it might help if we start telling the media and the MPs what the issues are. Because they don’t seem to understand the issues either.

So that’s why I wrote this post (and these web pages). You get to decide if you are a carer. Not the Facility.

Facilities are not gatekeepers with the power to unilaterally ban all visitors. They don’t make the laws. They don’t interpret them on your behalf. They don’t seem very good at applying the law either.

Do you think these statements are too extreme? I’m basing them on facts. For example, it is a fact that since early 2020 many Facilities around Australia have been banning all visitors except for a few extreme exceptions, like ‘end of life’ care; in breach of the State and Territory legislative limits.

It is a fact that they have continued to do this for over 18 months (at the time of writing).

They need to start reading the law, and allowing carers to care, even if those carers are not employed and paid for by them.

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