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A mother of a nine-month-old baby girl who has Down syndrome has spoken out on the lack of supports for children with the chromosomal condition in Ireland.
Anna Buday, mum to baby Esther, told Ireland AM that she was “crying for help” for her baby daughter, but came to realise that there was a lack of provision for essential support for Esther, such as speech and language therapy and occupational therapy. She worries the lack of provision could impact Esther’s development.
Asked by host Tommy Bowe: “And what sort of support will she need as she grows up?” Anna replied: “That support was missing for us. And I find this incredibly challenging and stressful on top of everything because she was NG tube fed, her muscles, her jaw and tongue were not developed that well naturally.”
'I was crying for help', Anna Buday on the lack of supports for her baby Esther and how it could impact her development.#WorldDownSyndromeDay pic.twitter.com/UCSVkbRKxT
— Ireland AM (@IrelandAMVMTV) March 21, 2022
Anna went on to explain that Esther was only referred to for speech and language therapy after she almost choked. She said that she has had to make formal written complaints for her daughter to be seen by the HSE for appointments for the therapies she needs.
“So, two weeks ago, ten days actually, on the 10th of March, her first choking incident [happened], and then it happened the next day, which was very scary, because, you know, when you have a baby, you’re afraid of a diagnosis. Then you get a heart condition, you are afraid of her heart, but then your baby’s choking and then you are there and you don’t know what to do, so that was very stressful because I was requiring and requesting to meet [a] speech and language therapist. You know, I was crying for help. I was contacting early intervention. I was always told there is no plan for us […] she doesn’t need that.
“And I said, it’s impossible to say that there is no plan for a child who is dependent on these services and these therapies. So only after this choking incident, Down syndrome, they were so nice. They immediately contacted their speech and language therapies and she met me and said no, you have to work with someone who isn’t in early intervention. So, then I had to write a complaint. Esther should be seen by someone this week.”
Host Muireann O’Connell then asked Anna, “So you’re saying, Esther is nine months old and you haven’t had contact from the HSE, you haven’t been brought into appointments, speech and language, for physio for Esther?”
“No, for nothing,” Anna responded, adding: “Physio was also very difficult because I was inquiring since September and they kept telling me, ‘In two weeks’ time, in two weeks’ time’. Like I had no contact still and I was inquiring, ‘Who will be her speech and language [therapist]? Who will be her occupational therapist, who will be her physiotherapist?’, just so I know what the critical points [are] so that I don’t miss this.
“But I was always told that there was no one assigned, so that was very frustrating, because like, you know, this child is so dependent on you.
“It is her constitutional right to get this and she needs that, just for her normal development. She needs the therapies and there was no one [providing them] so I had to go through the process of writing complaints which was tiring. Then of course they contacted me and they tell me, ‘There is no plan for Esther.’ And that was heart-breaking. How can there be no plan for babies who need that?” Anna added.
Earlier this month, Gript reported on a damning survey from Down Syndrome Ireland which found that people with Down syndrome were not being supported by the HSE.
The survey found that families of children with Down Syndrome reported that 65% of those surveyed had received no speech and language therapy in the last year, while 44% received no therapy at all.
Yesterday, Gript reported on the crisis in children’s disability services as Down Syndrome Ireland created a flash mob dance in celebration of World Down’s syndrome day. Whilst celebrating the day, CEO of Down syndrome Ireland, Barry Sheridan, also highlighted the crisis in children’s disability services.
Mr Sheridan said: “While we strive to celebrate WDSD by raising awareness about the abilities of people with Down syndrome, it would be remiss of us not to highlight the current crisis in children’s disability services that is affecting thousands of children with Down syndrome and other disabilities in Ireland.”
The charity has published a report which shows that:
The evidence presented in the report highlights that while this is a longstanding issue, the situation has been worsened by the pandemic.
Mr Sheridan continued: “Parents and children are being left behind by the HSE and the Government – this is a crisis and one that is getting worse all the time. We’re aware of children up to four years of age who have not had any access to vital early intervention services.
“For children with Down syndrome, missing out on the early and consistent benefits of vital therapies has lifelong negative consequences but it also has consequences for our health service in terms of increased need for health and social care services across the lifespan.”
Disability organisations the Disability Federation of Ireland have welcomed the report and echoed calls for immediate action to be taken for children with disabilities.
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