Government needs to hear some home truths from family carers

There is an army of family carers out there who want their elderly relatives to continue to live at home, so it’s time the State gave them the help that they deserve, writes Zoe Hughes

CLARE lives in Cork, with her partner and three children under 10, one of whom has an intellectual disability.

In recent years her elderly parents have needed more and more care and support.

She calls in to see them most days, makes meals for them that they can reheat in the evenings, and juggles a part-time job in the local chemists.

Her parents receive a home care package of four hours per week, spread over five days, and because of her caring responsibilities for her son with an intellectual disability, she often can’t visit at weekends.

She’s happy to provide this care for her family, but she’s feeling really overwhelmed.

Her dad is due to be released from hospital — he slipped and injured himself when Clare wasn’t in the house.

Clare has been told all that can be offered is an extra two hours’ home care support each week, and she’s worried about how she can provide care for the rest of the week.

It has been suggested that the local private nursing home could accommodate both her parents immediately.

Both her parents have expressed strong views about wishing to continue to live at home.

What would you do in this situation?

Unfortunately, it’s a situation that increasing numbers face on a daily basis.

There are, according to Census 2011, nearly 200,000 family carers in Ireland — people who provide care and support to a family member in their own home.

This army of family carers provides nearly €4bn worth of care every year, ensuring that the wishes of their family members to remain at home are respected.

To do so, they and those they care for need more help.

Home care is a key aspect of this help, and whilst many families have access to it, it is not enough. Not nearly enough.

Despite the increase in the ageing population (whom home care primarily targets), it is crystal clear that funding for the scheme is not increasing in tandem.

The level of publically provided home care was reduced by more than 10% during the crash — though, to be fair, the HSE has restored the nominal level of provision in recent years. But this only tells part of the story.

There has been a 25% increase in the population of those aged 65 and over during this period.

Home care provision needs to increase by at least 4% per year, merely to keep pace with demographic demands.

We understand that the much-alluded to extra €40m for home care this year will merely enable the HSE to deliver the level of home care services provided in 2015 and maybe a small bit more.

Our research suggests a deficit in home care of approximately 1.6m hours in 2016.

Government policy commits to supporting people to stay within their community for as long as possible.

However there is clear inflexibility in the system, whereby patients have been left in an acute bed for months on end, costing thousands per week, because a home care package costing one tenth of this is not available in the community sector due to lack of funds.

In Clare’s case above, she would need to provide care to her mum, and visit her dad in hospital most days.

How does she continue to juggle work, her relationship, care for her children?

How long until the family reaches breaking point?

At the launch of the Alzheimer’s Society of Ireland pre-budget submission was Helen McEntee, minister of state for mental health and older people, Senator Colette Kelleher, CEO of Alzheimer’s Ireland, and Helen Rochford Brennan who was diagnosed with younger onset Alzheimer’s and is a leading spokesperson on dementia. Comments from Ms McEntee suggest there is some political will to placing access to home care on a statutory footing. Picture: Orla Murray

Earlier this month we heard of a 92-year-old woman who had been in hospital, despite being medically ready for discharge, for more than 300 days — at a cost of more than €280,000, when the approved home care package would have cost €16,000 in the same timeframe.

For others, and for family carers who provide full-time care in the home, the scant hours within a home care package may be the only time they can get out to do those little tasks that we all take for granted — paying bills, having coffee with a friend, buying groceries — but they make a huge difference.

With the much debated Fair Deal scheme, there is a statutory entitlement to long-term residential care.

But most of us don’t want to live in a nursing home, we want to continue to live at home, with the support of family, for as long as possible.

Family carers want to provide that care.

Home care support is one of the keys to be able to do so, along with family care, and yet there is no entitlement to this support.

We, along with an increasing number of not-for-profit organisations working in the area are together calling for an increase in home care funding to address this clear deficit.

We in Care Alliance are also calling for access to home care to be placed on a statutory footing to enable people to receive the full complement of required home care — currently you can be assessed as having a need for 15 hours of home care, for example, yet receive only two — or none.

Comments from Minister of State Helen McEntee in recent weeks on this matter in this paper, together with a proposed private members’ bill on the topic from Deputy Willie O’Dea, indicate some level of political will to make this a reality.

But for now, Clare must find a way to care for her parents — without enough support — jeopardising her own health, her relationships and her job to do so.

Zoe Hughes is policy and research officer, Care Alliance Ireland

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