Hyland brands lack of respite in Mayo as an ‘awful, damning reflection on society’

THE mother of an eleven-year-old boy who has never received a day of respite has called for funding for two more respite centres for children in Mayo.

This comes as local election candidate Cllr Christy Hyland has said he has met families with tears in their eyes over the lack of services available for their children with disabilities.

Speaking exclusively to The Mayo News, Deirdre (not her real name), who lives in the West Mayo area, has been told that her son with special needs may not receive respite for several years because more than 42 other children are ahead of him on a waiting list.

The boy has complex needs, including Down Syndrome and autism, and is non-verbal.

Fergal (not his real name) currently receives support from an Enable Ireland worker who calls to his home twice a week. He is also in full-time education in a special unit in his local school and receives occupational therapy.

His condition means that his mother, who works full-time, and his father, who farms part-time and cares for his son, cannot attend events together.

Fergal currently avails of the Summer Programme, which sees certain schools remain open for children with special needs for between two and five weeks during school holidays. His mother must then take parental leave from her job to care for him until he returns to full-time education.

“We can’t go to things for the other kids together; if they have a match or anything like that,” Deirdre said. “One of us has to be with him all the time, if he’s not in school… You’re trying to work full time and you are trying to attend everything and you’re trying to keep everything going.”

INADEQUATE SERVICES

AT PRESENT, there are two dedicated respite facilities for children with disabilities in Mayo.

A number of years ago, Fergal’s family applied for a place on Western Care’s Home Share programme, which allows people with special needs to stay in approved homes for a few hours or more. According to Western Care, providers receive a ‘significant financial allowance’ that is ‘proportional to the type and duration of the home-share arrangement’.

Deirdre said that a respite place may become available for Fergal when he turns 18 and moves into adult services. Even then, she added, a place may only come up every ‘six months to a year’.

Fergal has not received speech and language therapy in school since September 2022, when his former therapist left their position.

Deirdre said that private speech and language therapy would not work for him because ‘when he goes in somewhere new, he’s overwhelmed by the place. He wants to pull it apart’.

“When it’s part of the routine in the school and the speech and language therapist is coming into the school, and then it works because he sees it as part of the routine of the day,” she explained. “You would imagine if he was getting speech and language therapy all that time that his speech would have come on better than it is. He has only single words.”

Deirdre described the lack of services available for children with special needs in Mayo as ‘absolutely crazy’. “Two houses [for children with special needs] for the size of Mayo? It’s crazy,” she said.

She also called for the means-testing regime for the Carers Allowance to be reviewed.

Last month, a group of TDs put forward a Dáil motion calling for the abolition of means for the allowance – a call that has been echoed by Independent Mayo County Councillor Patsy O’Brien.

Minister for Social Protection Heather Humphreys also established an Interdepartmental Group tasked with looking at the area of means-tested payments to family carers.

From June, the weekly income threshold for Carers Allowance will be further increased from €350 to €450 for a single person, and from €750 to €900 for carers with a spouse/partner.

“The truth of the matter is that the person that’s looking after cannot go out and get work because they have to be there looking after the child. All families, with the current cost of living, need two incomes coming in,” Deirdre said.

‘SCANDALOUS’

CLLR Christy Hyland, a local election candidate for the Westport Electoral Area, said he has encountered ‘numerous’ cases of families who cannot get respite for their loved ones.

“They say, ‘Christy, there seems to be funding for everyone except us’. The tears are in their eyes,” he told The Mayo News.

The Independent councillor described the lack of services for people with disabilities as ‘an awful, damning reflection on society’ and has called for the Government to fund adequate services.

“We have to help these people. They are stressed out. Some people have to give up their career to take care of their special-needs loved ones. And it’s not good enough. They feel isolated, they feel left out, the carers are not being taken care of by us as a society,” he said.

“They are doing tremendous work caring for their loved ones on a 24/7 basis, and it’s scandalous they can’t even get a few hours’ respite care. And we call ourselves a good society and a good country?

“We need to start looking inward to see what kind of a society we have that we can’t reach out and help these people that are helping these beautiful special-needs people. It’s an awful, damning reflection on society.”