Breda O’Brien: ‘Community care’ is exposed as an empty concept when a carer dies

The promise of “care in the community” is tested most brutally when the community’s main carer dies. A parent’s death or incapacity is entirely predictable, yet services often treat it as a sudden emergency.

For-profit companies are generally the only providers with the capacity to respond. The person with an intellectual disability may then be sent far from home, losing a parent, a home, a day service and a familiar community at the same time.

A parliamentary question from Liam Quaide, the Social Democrats TD for Cork East, found that the HSE knows of more than 500 people placed outside their county. Of those, 179 were moved more than 100 kilometres. In 280 cases, the displacement followed a crisis such as the death or incapacity of a parent or primary carer. The former HSE region B, covering parts of south Dublin, Kildare, west Wicklow, Laois, Offaly, Longford and Westmeath, could not provide figures.

Tony Murray, a founder of the advocacy group Before We Die, says the old institutions’ high walls have been replaced by kilometres of distance. The group estimates that about 2,000 adults with intellectual disabilities live with parents older than 70, while another 500 live with parents in their 80s or 90s. It knows of three full-time carers in their 90s.

Planning remains rare. Seventy-eight percent of families have had no long-term housing discussion with the HSE or another body, and only 2 percent have a written plan. Just 19 percent appear on an official housing list. The HSE says Ireland will need at least 1,900 additional residential places by 2032 under a minimum projection, and 3,900 to restore provision to levels before the 2008 recession.

Murray says local authorities will not allocate scarce housing without a care plan, while the HSE will not create a care plan until housing is secured. In that gap, ageing and exhausted families remain the only dependable community available to many vulnerable people. The article questions how a system focused on independence and autonomy can serve those who will never live independently.

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The Department of Health’s 2021 Disability Capacity Review has projected a need for a minimum of an additional 1,900 residential places by 2032 under a minimum projection and an extra 3,900 in order to return to levels of provision prior to the beginning of the 2008 recession.