Caring for carers: a blight on our society

It is shameful that dementia sufferer Theresa Kinsella (82) is left to care for her intellectually disabled daughter

 

Insufficient facilities for those citizens who are infirm, disabled, intellectually challenged or unable to fend for themselves represent a blight on our society. So does the manner in which family carers are treated. The situation is not solely the fault of successive governments and health administrators: it reflects the selfishness of voters who favour personal tax cuts over necessary social spending. It is the kind of evasive, communal blindness that once ignored the abuse of vulnerable individuals within religious-run institutions.

Although Taoiseach Leo Varadkar speaks about “giving back” to working families in the budget, the needs of those parents struggling to support dependent children in the absence of respite and long-term care is much more compelling. As a former minister for social protection, he must be aware of the shortage of accommodation for these damaged and incapacitated people.

Podcast: Rosita Boland on carers in crisis

The Health Research Board found that more than 2,000 residential places are required to meet the needs of intellectually disabled people who are being cared for at home by aging parents. The number being forced into this potentially dangerous situation is growing because of the lack of residential and respite facilities. Rosita Boland has spoken to some parents whose children reflect a broad spectrum of disabilities and she reports again today on their frustration. The experience of Theresa Kinsella (82), who suffers from dementia, but must care for her intellectually disabled daughter Fiona (52) is shameful.

It has been estimated that services provided by carers save the Government €4 billion a year. A formal recognition of that situation is required, not through a small budgetary increase in carers’ allowances, but by way of capital investment and tax incentives to provide additional residential places and respite care facilities. A building programme would provide reassurance for parents and a promise of greater future independence.

There is also need for legislation that would give statutory rights to disabled children and adults and set a benchmark for the provision of services at home and in respite and institutional settings. As things stand, Ireland is conspicuous in failing to guarantee such minimum rights and this, in turn, feeds into a fragmented HSE system where information is closely guarded, services are sometimes discretionary and are always difficult to access. A persistent complaint by parents is that they have to ‘shout and fight’ for every service they secure for their children. For parents who worry about what may happen to their children after they die, promises of accommodation in unnamed institutions offer little comfort. Transitional arrangements, involving dependents and parents, making the link between homes and residential centres are required. But the immediate need is for additional residential places.

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