Parents and NUI Galway have joined forces to provide children with Down syndrome the speech therapy they desperately need, writes Lorna Siggins, Western Correspondent
'Magic" is how Monica McAnena describes it, but it is magic that has involved little potion and lots of pure hard work. Children with Down syndrome in the west are benefiting from a unique partnership involving their parents and NUI Galway.
The partnership involves providing vital speech therapy for children aged six years and over who might otherwise find themselves on one of the State's waiting lists for same.
The parents' network, Voices for Galway, has employed senior speech and language therapist Christine Lacey on a full-time basis, while NUI Galway (NUIG) has come up with the physical location.
The location is within NUIG's relatively new speech and language faculty at Aras Moyola in Newcastle, where therapy rooms have been purpose built. A number of final-year students within the faculty are also involved, working under Lacey's supervision with children from all over Galway city, county and beyond.
Lacey, who is from California, has been in Ireland since 1994, and has worked in St Ita's in Portrane, Dublin and for a time in west Cork. Trained in media skills and speech and language therapy, she has worked for periods in both.
"I have been a television producer, I have done scriptwriting for TV corporations, and it is very common in California for people who have majored in drama to go into speech therapy," she says.
"I guess it is the fact that it is very physical, there is a strong focus on communication and incorporating drama skills, and I like to write plays with the kids as part of my work."
Down syndrome affects one in 500 children born in Ireland, and, as Monica McAnena of Voices for Galway explains, an abundance of research published in medical literature has shown that intervention can make a difference at any age.
However, under current legislation the Government has no obligation to provide vital assistance during periods when it would make a crucial difference, according to the organisation.
Effectively, this means that for parents like McAnena and others who have children with Down syndrome, there are two waiting lists for speech therapy - one for children with a disability, the other for children without. Depending on resources allocated to service providers and their own commitments, these lists can move at very different speeds. The situation may change under the new Disability Act, but only over time.
"It has and still does shock me to know that in Ireland certain groups of people can be marginalised in this way," Lacey says. "In California, we are obliged to provide equal services, and these services have to be offered within an appropriate timeframe - as in, during the most effective periods. For a child, this means as early as possible and on a continuous, structured basis. It is seen as a taxpayer's right."
Voices for Galway emerged out of the Galway branch of Down Syndrome Ireland (DSI), which has campaigned to reverse a situation where the State takes a discriminatory and paternalistic approach to disability.
The Disability Act was a crushing disappointment in failing to copperfasten a rights-based approach to services for many, but the group members in Galway had already decided to take their children's future into their own hands. "Yes, you could say that we were letting the State off the hook, but we were given no choice," one parent explains.
As a result, parents established an early intervention speech therapy programme for pre-school children with Down syndrome, from six months to three years in age. Supported by the Brothers of Charity, the Little Owls group is funded by the DSI Galway branch at a cost of €10,000 a month.
The latest initiative between NUIG and the parents also depends heavily on private funding. Speech and language therapy was introduced at NUIG in response to a State shortage of trained therapists in this area.
Ironically, some 100 speech and language therapists who have graduated from four universities are now finding it difficult to get work, due partly, in Lacey's view, to the lack of a mentoring system which allows graduates to gain sufficient experience on the job.
"I began with Voices for Galway last September and the clinic opened in January," Lacey explains. "NUIG needed placements for its students, and so I started working with two third-year students."
Since then, she has supervised two students at a time on cases - and the beauty of the project is that there is no waiting list. Some of the clients have had little or no speech therapy before, and programmes are tailored to suit their individual needs.
"With the little kids, they need everything from social to vocal skills," Lacey says.
"The older children and young adults require programmes which will allow them to live their lives - so we don't get too bogged down in educational curricula, when what they need is to be able to cope with everyday situations like travel, using a mobile phone and such like."
For the students, it is a terrific experience to watch and learn from Lacey as she works with the individual, rather than with the syndrome. "Students don't get many placements like this," Lacey says.
"You have a wide variety of ages, different conditions, and so there is a great range of challenges."
The challenge for Voices for Galway is to continue supporting its commitment. It has bought some time with occupational therapist Suzanne Moran, who is also based in the NUIG rooms. "Fundraising is hard work, but it has been very successful, and we are hoping to recruit a second speech therapist who would work with children from babies to six years," McAnena says.
The group recently secured the backing of Boston Scientific, which selects a project for its staff to support each year, and it is hosting a ball as part of the Making Galway Proud initiative in the Radisson Hotel, Galway, on October 6th.