Children across the State are struggling to access early intervention disability services, according to concerned families who feel their children have been “left behind” by the HSE.
Early intervention is a systematic programme of therapy, exercises and activities for children with disabilities.
During the first wave of Covid-19, speech and language therapists, occupational therapists and physiotherapists who worked for the HSE’s local early intervention teams were redeployed.
Families say this has left the services in disarray, with many struggling to get vital therapies for their children.
Barry Sheridan, CEO of Down Syndrome Ireland, says the organisation is hearing from hundreds of parents whose children are receiving “little or no” early intervention therapies.
However, he says the problem pre-dates the Covid pandemic.
“Before the pandemic, we surveyed families to find out how many speech and language therapy sessions they were offered in 2019. The average was five sessions in a whole year.”
Mr Sheridan added the situation has significantly worsened over the past year due to redeployment.
“Most of the evidence-based interventions need four to five sessions per week. Even once a week would be a huge improvement.”
Tilly Higgins, from Caltra in Galway, is two-years-old. She has never received any physiotherapy, speech and language therapy, or occupational therapy from the HSE early intervention team.
Her mother, Aisling, says Tilly did receive support from an early intervention nurse. “She was amazing. But then Covid hit and there was nothing. Just silence.”
During the first lockdown, the HSE sent a letter to the family, saying the early intervention therapists were redeployed. “It said we would be contacted in due course.”
At this stage, Tilly’s parents were trying to help her crawl and stand up, but she had yet to receive any physiotherapy.
They asked other parents for advice and Googled resources, but Ms Higgins says while they tried their best, they are not qualified professionals.
Ms Higgins then connected Down Syndrome Ireland (DSI), who put her in touch with their early years specialist. “Only for her, I would have crawled into a corner at times, it’s so lonely and isolating when the supports aren’t there.”
Around Christmas, Tilly began to get frustrated and angry. Ms Higgins believes this was because she couldn’t express herself. “The DSI Galway branch organised a family Lámh sign course, we paid for that ourselves.”
This enabled Tilly to communicate with the rest of her family. “She can let us know when she’s hungry, when she wants play or to have a bath, she’s back to her happy self.”
By the time Tilly turned two, Ms Higgins just “broke down”. “I was worried for her future. She’s two, she never had any physio, speech and language, occupational therapy.
“How will she be able to keep up with her peers, and to make friends?”
Ms Higgins contacted the HSE Early Intervention Team to raise her concerns. Over a month ago, she got an email saying a request for speech and language therapy had been made.
Recently, Tilly’s early intervention nurse visited her, and she said she would try to organise a physio and speech and language assessment.
‘Will it ever happen?’
However, Tilly has received no appointment date yet.
“It’s like chasing a pot of gold and the end of the rainbow . . . will it ever happen? Even if we get an appointment, is it just one appointment and then nothing?” she asks.
She believes with the right support, Tilly can really thrive. “She can soak anything up, she’s so bright.”
In a statement, the HSE said that while children’s disability services were initially stepped down in March 2020, services continued for children with high prioritised needs, with infection prevention controls in place.
“Furthermore, children’s disability services have continued to provide services despite the challenges encountered since the HSE cyber-attack on May 14th.”
The HSE added that it was “fully cognisant” of the stress caused to families due to waiting times.
It added that service improvements are being rolled out. “Children’s Disability Network Teams are being established to provide services and supports for all children with complex needs within a defined geographic area.”
These teams will include occupational therapists, psychologists, nurses, physiotherapists, speech and language therapists, social workers and others.
“Once all teams are in place, every child with complex needs will have access to a team, regardless of the nature of their disability, where they live, or the school they attend.”