In 2000 David O’Brien became the first person with Down syndrome to complete Leaving Cert Applied. Today an estimated 10-15 people with the condition similarly graduate from secondary school.

But the success among people with intellectual disabilities in realising their educational potential has created its own problem: what to do after leaving school?

Parents and students who had to fight hard for up to 20 years to get a mainstream education now find their options severely limited due to the way in which funding is structured for intellectual disabilities.

Cathal Griffin (21), from Glenbeigh, Co Kerry, who has Down syndrome, is starting a course in UCC next month. He has to pay the fees and accommodation costs himself, whereas if he opted for a more traditional route of sheltered training or workshop activities the associated costs of up to €18,000 would be covered by the State.

“Why does everyone else who does the Leaving get to choose what they want to do? A young adult with an intellectual disability will get financial support only if they go along with what is offered by the service provider. The element of choice is not there,” says Cathal’s mother Patricia.

Her son is paying €2,000 a year for the UCC course in contemporary living, and a further €1,800 a year for a Latch-On course, which is subsidised by Down Syndrome Ireland (DSI).

The latter, which focuses on building literacy and life skills, was introduced recently by DSI to cater for the growing number of students coming out of secondary school who were unable to access further and higher education.

“We always say, if you don’t use it you lose it; that is very real for young people with Down syndrome,” says Patricia.

Cathal – the youngest of eight children – says he is looking forward to attending UCC where a number of his siblings went. “I am excited. It’s two days a week, and I will be travelling by bus and then staying overnight in a B&B.”

Options

For David O’Brien from Glasnevin, Dublin, the experience of an obstacle-strewn system is very familiar. He says he would have liked to have gone to college but the options were limited.

“We were very much pigeon holed from the time he was a little boy,” says David’s mother Anita. “Everything was a battle – to get him into Montessori and every stage after that. You only got what you went after yourself.”

He loved English in school and was able to read at an early age which “opened up a new world” for him. “I was absolutely ecstatic when he got his Leaving results” – he passed by just 2 per cent in the Leaving Cert Applied.

“I would have loved it if he had gone to college,” his mother adds, “but it wasn’t available to him at the time. Every teacher and principal I asked said the training centre was the only option available.”

David spent a number of years in sheltered training and was “very frustrated” with many of them. He was put in a catering workshop “which he hated. But he stuck it out – as we do with everything; he was there for three years.”

Voluntary job

He found a voluntary job in Drumcondra Credit Union filing and sorting post, but when the office scaled back he lost his job. His mother says he was always “very capable” and feared he would go backwards if he didn’t have other opportunities.

Eventually he found a part-time job at the Botanical Gardens, where he remains seven years later.

“I love it,” says the history-making school-leaver, now aged 34. He does meaningful and “very satisfying” work, edging, landscaping and looking after the vegetable patch.

Grainne de Paor, director of policy at DSI, says the introduction of individualised funding for people with disabilities – as promised under the HSE New Directions policy – would enable more people to choose further and higher education. However, the policy is not being implemented, and “the money is still being driven into the service provider model”.

“Students in fifth year are getting quite anxious now that they are coming out of school and there won’t be anything in place. We are looking to talk to [Minister of State] Kathleen Lynch. It’s her policy, and it’s not being implemented.”

A spokeswoman for the Department of Health said a move towards individualised budgeting was under way but this would take a number of years to realise due to the complexity of the issues.

She notes it has “no policy responsibility for further education”. This is a matter for the Department of Education, which supports some access programmes for people with intellectual disabilities.

However, Patricia Griffin argues that health and education are "very bound up", adding "if all the young adults like Cathal went into service provision the money would be made available for them".

Griffin, who acts as education officer with DSI, notes that every child is different, and “so I wouldn’t be dictatorial” about what school-leavers should do.

“But right from the start we wanted Cathal to be mainstream – from primary through secondary. Why would someone who has been mainstreamed and benefited enormously from mainstream from the age of three revert at the age of 21 into a system that does not suit his needs?”