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

Care in the community for people with intellectual disabilities is allegedly the gold standard. The hollowness of this concept is shown every time a parent or other primary carer dies. This wholly predictable event is treated as a shocking surprise and immediately categorised as an emergency.For-profit companies, whose definition of community is somewhat elastic, are generally the only ones with the capacity to respond. The bereaved individual with disabilities is often placed far from home, losing their family, their home, their day service and their community all at the same time.A parliamentary question from Liam Quaide, Social Democrats TD for Cork East, established that the HSE is aware of more than 500 people placed out of their county, while 179 were displaced by more than 100km; 280 displacements were as a result of a crisis such as the death of a parent or a primary caregiver becoming incapacitated. What was known as HSE region B – parts of south Dublin, Kildare, west Wicklow, Laois, Offaly, Longford and Westmeath- could not even provide figures. Tony Murray, one of the founders of Before We Die, an advocacy group for ageing parents of people with intellectual disability, believes we have replaced the high walls of the congregated settings of the past with kilometres of distance. Before We Die estimates that there are approximately 2,000 adults with an intellectual disability living with parents aged over 70, and a further 500 or so with parents over 80 or even 90. Before We Die is aware of three full-time carers in their 90s. READ MORE Seventy eight per cent of families have had no long-term housing discussions with the HSE or anyone else, and only 2 per cent of families have a written plan in place. Only 19 per cent are on an official housing list.The HSE has said: “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.” Are we still blaming the recession nearly 20 years on?Murray says local authorities are reluctant to allocate scarce housing without a care plan in place, but the HSE will not create a care plan until housing is confirmed. So the only community that vulnerable people can rely on is their families, who are ageing and worn out.Yet, allegedly, the progressive attitude is to emphasise independence and autonomy for people with disabilities. This needs some interrogation. Of course, our society should facilitate people in every way possible to live full lives but what about those who will never be able to live independently? [ ‘It’s relentless’: Mother caring for disabled twin children says respite ‘critical’ for carersOpens in new window ]Under the Assisted Decision-Making (Capacity) Act, which came into force in 2023, everyone aged 18 or over is presumed to have decision-making capacity. It rightly aims to avoid infantilising people with disabilities – but as a presumably unintended consequence, erases those with serious intellectual disability and their carers. As Murray says, a two-minute conversation with his much-loved 42-year-old daughter, Aoife, would establish that she has the intellectual capacity of a small child. Nonetheless, families are often forced to undergo a rigid, stressful and expensive court-based process to be declared a decision-making representative for the child they have housed and cared for since birth. Families ineligible for legal aid can have costs of up to €10,000. This is the situation that Murray and his wife, Susan, find themselves in, along with hundreds of others.Ageing parents want so little. They want a statutory register of need, instead of piecemeal, inadequate statistics. They want an emergency fund for people living with parents over 70 and a structured care and transition plan by 18, so that people with disabilities can gradually move from home into a supported setting before a crisis hits. They want capital provision for voluntary and statutory providers so that the HSE can stop relying on high-cost private, for-profit companies. They want an end to people being sent far from home and reform of the Capacity Act to honour the needs of those who will never exercise capacity. [ What if carers and the homeless drove tractors through Ireland’s streets?Opens in new window ]Since 2011, the congregated settings that were often underfunded, understaffed and lacking in privacy and dignity are being wound down. But the alternative model – dispersed housing – worries parents. Dispersed housing increasingly means a one-bedroom flat with a revolving door of social care workers. Who will reach out to a severely disabled person in this so-called community? We barely talk to our allegedly fully functioning neighbours as we rush to our cars.Parents would love to see cluster housing that offers the possibility of real community, along the lines of the small developments of 15-20 purpose-built housing units often provided for older people, but with integrated support. Before We Die is holding a National Assembly in the Helix on September 19th. It might lessen our collective shame just a little if it were packed with people coming to support, and not just the exhausted, despairing families forced into lobbying for basic provision for their children.