Carers speak out in bid to get proper supports

Galway mum Ann Boland – whose daughter Margherita was born with Down syndrome – sums up what it’s like to care for a child with special needs.

“When a child with extra needs is born into the family, it’s like playing a game you don’t know the rules to; where the goalposts are continuously changing and there are more referees than actual players”.

Ann, who lives in Rahoon, is one of thousands across the city and county caring for a dependent with special needs.

The Disability Federation of Ireland (DFI), the umbrella group for 120 member organisations in the voluntary sector providing services to people with disabilities, has calculated that there are 10,133 people in Galway with at least one disability.

More critically, DFI says that the chances of these families living in consistent poverty have more than doubled on a national basis in the past decade – now at 24%, up from 11% in 2011.

But poverty is only one of the issues that families have to deal with; access to care and education – offering the chance of advancement in life – are also critical problems, as Ann Boland revealed.

Her daughter Margherita is the youngest of five children.

Her family moved from Rome to Galway when she was ten years old. She had no English, so Ann not only needed to find her daughter a school that was able to provide adequately for her, but she needed to learn a new language on top of that.

She got there eventually, and completed a diploma course in NUIG where she was in classrooms and lecture halls with other students who became her friends.

She got into third-level via a programme which still run in Trinity and in Limerick – but is no longer in NUIG.

But that’s just another impediment; and there are countless problems with the system that people with disabilities are thrown into, without choice.

Once they and their carers get used to this system, they are finished school, turning 18 and are on their own once again.

Their parents grow older and neither they nor their parents have the supports to keep up the care they so desperately need as they begin adulthood.

“If we build houses and put them in it, three or four people with roughly the same needs, and give them a housekeeper to check in, overlook the cooking and stay overnight so our children have someone if they need them, then when we’re gone – which will someday happen – they will be prepared for it,” said Ann.

“There will always be a minimum of care needed, and if this is done then it would be very cost-effective for the Government at the end of it all. Whereas if she goes into emergency care, it would cost a lot of money.”

Another Galway mum, Sandra Byrne – whose adult son Karl is on the Autism Spectrum – said that independent living is a huge word that gets thrown around.

“None of us are living independently. I hate that word,” said Sandra, from Salthill. “It’s more assisted living.

“We as parents, when we are no longer here, we want to think that our young person is in a lovely environment, is happy, can go about their day and be assisted by an adult.

“They don’t need constant minding, their needs are not that great, but they do need assistance.”

But the problem with service provision is that there is one staff member for six or eight people – and as none of them are on the same level, they have to cater for those with the greatest dependency, which just doesn’t fit everybody.

Dr Joanne McCarthy is head of policy and research at the Disability Federation of Ireland – and she says that Ireland is the worst country in Western Europe to be a person with a disability.

“There are 643,131 people in Ireland living with a disability. That is more than 13 per cent of the population,” she said.

“The good news is we have solutions – comprehensive solutions. Poverty, unemployment and social inclusion are interrelated problems and the measures that address them must be across all Government departments,” she added.

DFI is seeking a series of key commitments from the political parties, which include an annual investment of over €200 in community services for people with disabilities; providing proper supports for people with disabilities in the jobs market, and addressing the additional cost of disability in terms of jobseeker’s and disability allowances.

“There is also a housing crisis for people with disabilities. Accessible housing, adaption grants, and living supports packages are urgently required,” she said.

It’s a battle they will take to all of the political parties during this election campaign – but they know it won’t be solved by February 8.

As Ann put it: “We’ve told our children they have a right to a future, to living a normal life, whatever is normal for them but the services just are not in place in Galway at the minute.”

Photo: Proactive Carers Galway members Ann Boland (left) and Sandra Byrne. Photo: Joe O’Shaughnessy.