A fight to be heard - ‘Being able to communicate is a basic human right’
On World Down Syndrome Day, Kathy Donaghy looks at the importance of speech and language therapy for children and adults with the disorder
If you've ever been in a foreign country and found yourself wanting to say something but not having the words, you'll recognise the feeling of frustration.
This is what it's often like for people with Down syndrome. While many of us take communication for granted, imagine what it's like not being able to tell people your thoughts, feelings or opinions.
All children with Down syndrome will have some difficulties with speech and language and accessing early, frequent speech and language therapy (SLT) is vital to their ability to communicate.
Article 19 of the Universal Declaration on Human Rights says "everyone has the right to freedom of opinion and expression; this right includes freedom to hold opinions without interference and to seek, receive and impart information and ideas through any media and regardless of frontiers".
However, this declaration is falling on deaf ears when it comes to ensuring that all citizens have this right as a chronic shortage of HSE speech and language therapists mean some children with Down syndrome are often waiting up to 12 months to be seen.
And according to Down Syndrome Ireland, waiting for a long time to access a therapist means a child is losing precious months in terms of language development.
Taking your child for private sessions is expensive. While the costs vary in different parts of the country, in Dublin you can pay up to €100 a session.
Fidelma Paris from Prosperous, Co Kildare, is mum to Isabella (13), Layla (10) and Heidi (8). Layla has Down syndrome and her mother says in the early days she had to fight hard to access services for her daughter.
Layla attends mainstream school - she goes to Scoil na Linbh Íosa with her younger sister - and is doing well. But Fidelma says she spent the first years of Layla's life constantly on the phone trying to make sure she had access to all the services she needed, from physiotherapy to occupational therapy. When Layla was born at the Coombe Hospital in Dublin, Fidelma received all her medical follow-up appointments from cardiology to hearing tests.
But it was things like getting access to SLT and occupational therapy that Fidelma had to work hard to secure for her daughter.
"I started looking for early intervention straight away because people told me the earlier the better when it comes to things like speech," she says.
The family got involved with the Kildare branch of Down Syndrome Ireland and accessed private SLT for Layla. Through its branch network, which is run almost entirely by volunteer parents, Down Syndrome Ireland provide heavily discounted SLT sessions. Other branches help parents to meet the cost of private therapy. These parents then have to help with local fundraising efforts in order to help fund speech and language therapy which should be available from the HSE.
Fidelma and her husband Matt pay around ¤700 a year for SLT for Layla. It's something they have to budget for and Fidelma believes Layla's speech and reading is as good as it is because she was able to access SLT when she was still just a baby.
She says because Layla's muscle tone is poor, her writing isn't great and this is something they're working on.
However, Fidelma knows that not every family can afford to pay for SLT. And she says what's offered through the HSE is way below what children need. "They might see your child one day a week for six weeks and that's it for the year. Your child will need an SLT regularly right up into adulthood. They need to see an SLT once a week or once a fortnight - there needs to be that continuity because communication impacts on everything," says Fidelma.
Fidelma believes that in an ideal world, every child with Down syndrome would have access to a dedicated team of occupational therapists, physiotherapists and SLTs from birth. She believes her family was lucky in that they could access extra help through their local Down Syndrome Ireland branch.
"If you're waiting years for SLT, it's too long. You can't get that time back. Communication is everything in life," she says.
Declan Murphy (30), from Waterford, is an administrator at the Edmund Rice Conference and Heritage Centre and he lectures speech and language therapy students at NUI Galway. He recently co-authored a paper on communication as a human right and talked about the importance of communication as a young man with Down syndrome.
"I particularly understand that some people in society don't have experience of people like me.
"It is easier to have conversations with people who know me well down through the years and they understand where I am coming from. When I make a smart comment or something, they just laugh and I feel more comfortable and great having a laugh with people that I know," says Declan.
"I feel myself that I am comfortable talking to more easy-going people. It is good for me, big time actually, if people talk to me slowly. I am particularly clear about that in my mind. People who ask questions like 'how are you?' 'how are you doing?' are great for starting conversations. I feel they have an interest in talking to me. It is about calm people who take it slow and explain things in conversation to me."
Nicola Hart, National Speech and Language Advisor with Down Syndrome Ireland, says last year the organisation spent over ¤2m on SLT, with the vast bulk of this money coming from funds raised by parents. Nicola says it's recommended there should be two to three therapists per 100 children with complex needs. But the most recent figures show a national average case load of 162 children with complex needs for each SLT, with some areas at more than 300 children per SLT.
"If you have a case load that's manageable, you can build up a relationship with the family and they trust you. If you have a large case load, it's much more difficult to build up that relationship," says Nicola.
"Being able to communicate is a basic human right. To be able to develop your communication skills to the best of your ability is a basic human right. Communication makes a big difference to how the world perceives you. If you have a child who doesn't say whether they want milk or water, after a while you stop asking them. That teaches a dependence on others. The fact that families are putting their hands into their own pockets to access SLT tells us everything.
"Reading is often a way into communication, but if you don't learn to read or socialise with your peers, you are entering a pathway that leads you to a dependency.
"I think there's a lot of frustration out there. One of the things we get lobbied about the most is the lack of SLT. People don't realise how much progress can be made if the child gets good SLT."
Down Syndrome Ireland's annual Purple Run takes place in the Phoenix Park on Saturday, March 4 at 11am. The charity is encouraging people to "run with us, not for us". The event is open to all age groups and abilities, and participants can choose to walk, run or push a buggy over the 5k or 1k distance, allowing all members of the family to take part. Registration costs €20, visit downsydrome.ie.