Protecting older people’s human rights

Protecting older people’s human rights

Maeve O’Rourke, Human Rights Lawyer

In 1988, there was a Government working party,
In 2002, there was a working group,
In 2012 there was a Seanad Public Consultation…..
For almost 30 years, official working groups have been looking at the ways that we should support older people….
And for all of those years, they have been recommending that older people should have statutory entitlements to a range of home and community services.

Statutory entitlements would provide a guarantee that individuals could access services. There would be clarity regarding what services were guaranteed, and on what basis. And there’d be equality of access around the country. Perhaps most importantly, funding would have to be made available, however that might be achieved.

Currently, the only law regarding care services for older people is the Nursing Homes Support Scheme Act, or – as it’s better known – Fair Deal. Now, Fair Deal entitles the State to financially support older people in paying for their own nursing home care. It’s not a statutory entitlement to care, in the sense that if State funding dries up, an older person can’t demand support.

But, it’s fair to say that the existence of Fair Deal has put considerable pressure on the State to fund nursing home care – and no equivalent scheme, and certainly no statutory entitlements exist for home and community services.

Study after study has found that people want to remain at home as they age, and government policy states that its aim is indeed to keep us there … in our homes, and our communities…. BUT…. policy is one thing. Delivery is another. And when it comes to delivery, funding and attention is not going to home and community care. Research published in May by UCD, the Irish Association of Social Workers and NGOs states that older people’s preference for receiving care and support in their home and community simply is not being realised. The Alzheimer’s Society says funding for home care was cut between 2009 and 2015 while funding for long-term residential care increased. According to the Care Alliance, the 2016 budget increased the Fair Deal allocation by €35 million while it aimed to reduce spending on older people’s services, which is mostly home care, by almost €10 million. This required intervention from the Minister for Health just last month, when he pledged an additional lump of funding for home care.

So, when it comes to older people, is it OK for us to channel funding into residential care and leave a major gap in the area of home and community services, even though as a group, it appears that older people would prefer home services? Well from a human rights perspective, I suggest it just might not be.

Ireland is very close to ratifying the Convention on the Rights of Persons with Disabilities. We signed it in 2007 and since then, according to the government, we have been getting our house in order so that we will in a position to comply with its demands. And two things it will demand are, firstly, that we guarantee people with disabilities the right to live in the community, the right to choose their own place of residence, and the right to the personal assistance necessary to support them living and being included in the community; and secondly that we guarantee them the right to make their own decisions – and our soon-to-be commenced Assisted Decision Making Act is intended to make this part of the convention a reality.

So where does that leave older people – older people with a disability like – say – dementia? Well as the Alzheimer Society of Ireland highlights, dementia is considered a disability under Irish Equality Law, and indeed under the Convention on the Rights of Persons with Disabilities. It’s also believed to be one of the primary reasons – if not the primary reason – for older people being admitted to nursing homes. So what if some of those people who are being nudged, persuaded, or even pressurised into entering a nursing home decide to say No. What if they decide to say something like ‘Under this assisted decision making act, I believe I have the right to make my own decisions. I am deciding to stay at home, and I want the State to look at whether it can provide me with the support and assistance necessary to do so.’

Might this happen? Well of course it might and actually, if we really want this new Act to make a difference to people’s lives, we should say, great. We should welcome it and say, yes it might take time, yes it might take resources, but yes, the rights of people with disabilities to make decisions and live in the community are ones we should respect.

But moving on then, we should surely also say …. that if we are going to respect those rights in the cases of people with disabilities, then surely we should respect them in cases of older people in general …. And a UN working group is actually currently devising the contents of a convention on the rights and dignity of older people. And my bet is that the right to make one’s own decisions and to live in the community will be part of that convention too.

But what if it is the case that we shouldn’t just be making provision for home and community care because it‘s a positive fulfilment of human rights. What if what we are doing at the moment is a negative? What if our preferentially funded residential care is not just neutral in terms of human rights? What if it can actually be in violation of some of them?

Very recently, UCD and the Irish Association of Social Workers produced a report called: ‘I’d prefer to stay at home but I don’t have a choice’. The report revealed that often, older people were not receiving the home care hours that their social workers had requested and it concluded that a worrying consequence of this was often premature or unnecessary institutionalisation.

Premature or unnecessary institutionalisation – it’s a pretty big mouthful, but it’s also a pretty big issue….because arguably premature or unnecessary institutionalisation – particularly where it’s not what someone wants – could offend against at least two basic guarantees…. One, the right to respect for a person’s private and family life, and the other, the right to personal liberty.

Interfering with a person’s private and family life, or depriving them of their liberty can sometimes be justified, but in both cases, it has to be necessary and proportionate and in accordance with law. It is surely the case that if a person is in residential care, against their wishes, not because it’s the last resort but simply because no one is delivering the home care hours they need – that such type of care might not be necessary and proportionate. If, for example, they’re also prevented from leaving the nursing home or they are restrained it might even amount to an unlawful deprivation of liberty.

Looking at this issue, consultant gerontologist Shaun O’Keefe has spoken of his concerns about de facto imprisonment in nursing homes, while Sage, the national advocacy service for older people, contends that chemical restraint – which is the use of medication to control behaviour rather than for therapeutic purposes – is unfortunately still a frequent practice. We need legislation to clarify whether and, if so in what circumstances, an older person can be detained or restrained against their wishes. I understand that some legislation may be in the pipeline. And in preparation for that – and absolutely in the absence of it – we need to ensure that sufficient home and community services are available to avoid unnecessary institutionalisation against people’s wishes.

But protecting older people’s human rights isn’t just about keeping them out of nursing homes when they are not necessary, and about making community care more accessible. It’s also about regulating that community care system to ensure its quality.

Regulation isn’t something a state can ignore. It can’t just outsource services, and then take no responsibility for the quality or monitoring of them. It actually has to take effective measures to protect people from inhuman or degrading treatment, where it knows or ought to know there’s a risk. This obligation applies even where the individuals or organisations posing the risk operate entirely independently of the state. This need for regulation is known. It’s been recognised and called for by the Law Reform Commission. Some of you might remember a Prime Time Undercover investigation in 2010. It revealed some appalling instances of abuse of people in their own homes – so much so that the then Taoiseach, Brian Cowen, said that the regulation of homecare needed to be looked at as a matter of urgency. The HSE has brought in Guidelines for home care, which it applies through its procurement process. However, in 2011, the Law Reform Commission said that the Guidelines were insufficient to meet the State’s obligation to regulate – not just because they only apply to providers who contract with the HSE but also because they’re not backed up by a statutory monitoring or inspection framework.

But the rights argument goes the other way too. While that Prime Time programme unveiled instances of neglect from carers, we all also know of carers who are wonderful, who go way above and beyond call of duty – they need to be protected too.

Just last Sunday morning, I spoke to two women about the work that they do. They are both professional carers. They work for a private agency. And they have a number of clients each. The care they provide is both wide ranging and demanding. They often have to use hoists; they deal with incontinence, hydration, and skin health regimes. They sometimes have to manage challenging behaviour. They help with physiotherapy exercises, they record fluid intake and continence and stools; they attend to wounds, they monitor blood pressure and they administer medication. They are not actually supposed to do those last three things but they have to, if no-one else is available, and if public health nurses leave them with supplies and instructions.

In addition to all of this, they do the basics. They tidy the client’s house; they prepare meals, and they provide companionship. They also worry. That’s why they often band together, and take turns at calling into their clients when they’re off duty, to check that they’re alright at night time or on a hot summer’s day.

These particular carers work for an agency which provides its people with in-depth training and supervision and also goes to great lengths to match carers with clients. But that’s one agency. They told me stories of another one where training is simply delivered online, while the HSE itself drew their criticism for its relatively basic training requirements, its rates of pay and for its recent tender for carers to work for as short a shift with one person as half an hour. The government came into their line of fire too… they spoke about how decimated the system would be without the skill and professionalism of migrant workers … migrant workers, who because of the government policy of not giving work permits to home carers, are here illegally, and so are vulnerable themselves to abuse and exploitation.

So what’s to be done? Well the whole point of Human Rights is that it looks at questions from the perspective of ‘how would I like to be treated myself?’ And when it comes to this question, of care and support of older people, I think there is little doubt. We would all like the right to be supported in living at home and in our communities if that was our choice; we would all like the right to be protected from abuse; and if we were carers, we would like to be valued, rewarded and protected in a well regulated industry.