People in Louth seeking assisted living solutions 'may as well be asking for a unicorn'

There is ‘nothing but emergency care’ for people with disabilities whose families are no longer able to look after them, Louth TD and Sinn Féin disability spokesperson Ruairí Ó Murchú has said.

The Louth TD was speaking during a Disability Matters Committee hearing this morning that heard from a number of representatives of families who have children and adult children with disabilities and who outlined the huge difficulties there are in getting residential placements for them when parents are no longer able to care for them.

Among the contributors at the committee were Tony Murray and Sarah Roarty from the Before We Die campaign.

Mr Murray highlighted how a 97-year-old mother is still caring for her son who has Down’s Syndrome.

Deputy Ó Murchú said it was clear there is ‘a complete lack of joined up thinking by the government and the HSE’ with ‘pockets of data’ being collected but ‘no overall plan’ as to how best to provide care services for people with disabilities before an emergency situation like a parent’s illness or death overtakes families.

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He said the situation for many families is ‘frightening’ and the Disability Matters committee had heard a number of times previously that there is a need for appropriate housing to be made available in a planned and sustained way for those with disabilities.

He said: “I have heard people in my own constituency office asking about assisted living solutions and they may as well be asking for a unicorn – these things are rare, if they exist at all.

“Unfortunately, we have seen too many times that families are left with no other option but to take someone to the Emergency Department and leave them there so that the HSE emergency placements kick in and that’s where the for-profits come in as they are the only ones who are there to respond”.

Deputy Ó Murchú said it was clear that there was ‘very little planning’ happening on this issue in the HSE, despite previous assurances from health officials that there is. The committee was told by Ms Roarty that in a recent survey of 1,000 parents of people with disabilities, just 2% have a written care plan and a statutory register of need was urgently required.

Deputy Ó Murchú said: “The Disability Matters Committee heard today from passionate parents, with real, lived experience of the huge gap that exists between what the government says it’s going on disability planning and what is actually happening.

“There needs to be a sea-change from the Minister and from the HSE about how they are handling this issue. They have the data, they know the people they need to provide services for, they know who will need care when parents are older, but they are not planning properly and are stripping the humanity out of the system”.