One of the country’s top corporate lawyers, Stephen Haughey, has brought his expertise to Enable Ireland as its chair, driven by a desire ‘to give something back’
THE biggest challenge facing many parents of children with disabilities right now is getting services and diagnostic advice, with many on waiting lists.
That’s according to Skibbereen-based chairman of Enable Ireland, Stephen Haughey.
Set up in 1948 as Cerebral Palsy Ireland, Enable Ireland is the largest organisation outside of the HSE that supports people with disabilities.
It has services in 14 counties, including multiple locations in Cork.
In 2010, 3,800 children and adults availed of its services, and today that number has grown to 13,000, including 1,200 in Cork and 370 in Kerry.
Stephen said he got involved with the charity to ‘give something back.’
Two of Stephen and his wife Elaine’s four children were born with cerebral palsy and attended Enable Ireland.
The couple’s second child Christine sadly died in their Skibbereen home on Christmas Eve in 2018 at the age of 29; and their fourth child Sean passed in 2010 at the age of 15, also at home.
‘It has been quite a journey,’ said Stephen.
Christine was diagnosed when she didn’t meet some of her developmental milestones at the age of around two.
‘The diagnosis happened earlier with Sean as he was showing some of the same behaviours. But it took a while before we found out that it was genetic, but not hereditary.’ said Stephen.
Christine was non-verbal, but was well able to get her message across, her dad said.
‘She was a hard nut, she didn’t suffer fools. Just because she couldn’t talk didn’t mean she couldn’t communicate. If she wasn’t happy with you, you knew about it. And Sean was just full of mischief with a great sense of fun,’ he said. Both Christine and Sean were extremely adept at using up-to-date technology to communicate, and Christine did a specialised course on this in UCC.
Taoiseach Micheál Martin with Oliver Lynch launching Enable Ireland’s strategic plan at their children’s service centre in Curraheen in Cork recently. (Photo: Gerard McCarthy)Stephen said they were fortunate that through his work – he was a partner in top corporate law firm A&L Goodbody – they could afford to pay for help and services for Christine and Sean.
‘Disability services are grossly underfunded by the government but we were privileged and had the help and the equipment we needed, but Elaine did bear the brunt of it as I worked 18-hour days,’ he said.
They also made sure their other children, Andrew and Alexandra, were included.
‘They always mucked in, they had to, and are very well rounded individuals,’ he said.
Originally from Belfast, Stephen and the family had always holidayed in West Cork and moved here permanently in 2010.
West Cork is now home and Elaine is lady captain of Skibbereen Golf Club.
Stephen (68) is a member of six other boards, and brings expertise in governance and project management to his Enable Ireland role.
‘We are a charity, even if I struggle with that word. We need to be for tax and other various reasons, but in every other way we deliver a fully professional services, employing top people and with a great board,’ he stressed.
Enable gets 90% of its €60m annual budget from the HSE, which leads to a dichotomy of having to be accountable while also autonomous, he said.
‘We’re underfunded, without it necessarily being anyone’s fault, and that’s our biggest challenge, keeping our head above water. Staffing is also an issue since the pandemic,’ he said.
In Scandinavia there wouldn’t be any need for professional charitable organisations like Enable Ireland. ‘The government do it all from day one, but things are just so embedded now in this country.’
His advice to anyone in his and Elaine’s situation is to practically make themselves aware of available services.
‘As a couple you also have to be very strong to cope. A lot of couples in this situation break up and I always tell people it’s so important to look after each other.’
Taoiseach Micheál Martin recently launched the organisation’s strategic plan which outlined its priorities to 2025 including opening new hubs, and developing adult services.
With Stephen at the helm as chairman, they look well placed to do that.
About Enable Ireland
Founded in 1948, Enable Ireland provides services for 13,000 children and adults with disabilities and their families in 14 counties.
Services for children and their families cover all aspects of a child’s physical, educational, and social development from early infancy through adolescence.
They offer a range of services to adults with disabilities which include day care, training, personal development, supported and independent living, and social and leisure activities. Enable Ireland is part-funded by the State. Every year they require over €2m in extra funding to meet the cost of delivering services.
Enable Ireland helped us when we needed it most
‘I REACHED out to Enable Ireland in a moment of desperation and they have been so supportive and caring to us ever since.’ So said Katy McCarthy, whose daughter Saoirse (7) has autism and an intellectual disability. Katy, her husband Shane and the couple’s other daughter Quinn moved from the US to Shane’s native Cork in August of last year. But by November Katy admits she was at ‘breaking point.’
Kate with Saoirse at the walk in Courtmacsherry this summer.‘We were desperate for respite,’ said Katy. ‘Saoirse found the transition from the US really difficult and we needed help.’
Her daughter struggles with sleep and wakes for several hours a night despite taking medication to help. ‘She also experiences frequent meltdowns and is sensory-seeking, which means she craves movement all the time,’ said Katy.She emailed Enable Ireland and a few weeks later the family received a visit from a social worker, and a speech and language therapist.
‘They came and observed what was happening and they saw that we needed help. They reacted very quickly and wrote letters for us to explain to people who cared for Saoirse what she needed,’ said Katy. ‘They are such a caring and professional organisation. They also organised family support for us this summer where they took her on outings for three hours a week which was invaluable to Saoirse and allowed me spend one-on-one time with my other daughter.’
Currently Saoirse attends an autism unit at Farran NS but on the recommendation of a psychologist, her parents are looking to secure a place for her in a special school. Katy is also driven to show people that autism is more than what is represented on TV and in films. ‘I want people to know there are many sides to autism as my family know.’
The family have ties to West Cork. Shane’s mother was born in Bealad, near Rossmore, and he holidayed in Courtmacsherry all his life. This summer they participated in a sponsored walk from the seaside village to Timoleague to raise funds for the Rainbow Club in Mahon, where Saoirse attends and other autism-related groups including the ASD unit in Kilbrittain NS.
‘Courtmacsherry is such a supportive community. The phrase “it takes a village to raise child” really rings true here as Saoirse is a safety and flight risk and everyone looks out for her.
‘Because we are ex-pats, it was so incredible for me personally to feel the love and support of the local community so soon after moving to Ireland. This event really fortified our deep connection to Courtmacsherry and we’ll always be grateful for the embrace of the people there.’
