Loss in early intervention disability services 'unacceptable', say parents

John Fitzpatrick and Linda Gorman Fitzpatrick, with their sons Dylan, 6, and Ethan, 2.

Parents whose children avail of early intervention disability services in the Springfield Centre in Mullingar have slammed the centre's closure due to Covid, saying their children are missing out on vital services such as physiotherapy, speech and language therapy and occupational therapy. 

The centre, which caters to people in the Westmeath and Longford area, is set to reopen this Monday, albeit at a reduced capacity of 20%, according to parents.

The therapists who worked at the centre were redeployed to conduct Covid tests and contact tracing, and have not been working in the centre since March.

Topical Issue 4 @SorcaClarke_TD To discuss the provision of support services in Longford Westmeath for those with Down Syndrome. https://t.co/MPlds7WezG #seeforyourself pic.twitter.com/JnvXdd9pqy

— Houses of the Oireachtas - Tithe an Oireachtais (@OireachtasNews) December 1, 2020

Worried parents have tried to keep up with physio and speech and language therapy at home, by using plans sent out by therapists, and there have been some limited virtual sessions.

However, parents are worried that their children won't progress and have lost valuable time. 

"The therapists have been very good and they are trying to help us, it's not their fault," said Linda Gorman Fitzpatrick from Mullingar. 

Her son Ethan is two years and six months old, and has Down syndrome.

"Ethan would have been having regular physiotherapy, some speech and language therapy, and occupational therapy. They are the three main things children with Down syndrome would need, but children with any sort of additional needs would use these services, such as children with autism and ADHD."

In March, everything shut down, and the therapists were redeployed to Covid testing and tracing. 

I got figures from the HSE. There's 167 therapists in our community health organisation area [Louth/Meath, Laois/Offaly, Longford/Westmeath] and 160 of them were redeployed."

Towards the summer, parents became concerned that there was no talk of services being reinstated, and in September, they got wind that some children's therapies were ongoing in the Primary Care Centre in Mullingar, but most of the children in Springfield were not offered a transfer.

She added that this issue was happening countrywide.

Ms Gorman Fitzpatrick has been sending videos to Ethan's physio, as he started walking during lockdown. However, she says she's not a trained professional so it's hard to judge Ethan's progress.

I am not qualified, but I've been trying to do physio, speech and language and OT with him. I will always see the best in what he does, they see him with a professional eye." 

Ethan also misses block music group therapy, where he can interact with other children his own age.

Ms Gorman Fitzpatrick sent a complaint into the HSE about the situation, and Ethan was offered a speech and language therapy session over the phone, and an occupational therapy sensory integration workshop online.

She thanked the HSE and accepted, but told them face-to-face therapy is needed. "I feel I was only offered the occupational therapy as a token gesture, as they know Ethan doesn't have sensory issues. There would be parents with children who have autism crying out for that."

Parents of children who are missing out on services began a campaign, along with their local branch of Down Syndrome Ireland. They contacted TDs, made videos for social media, and spoke to local media.

"We keep getting the same answer from the HSE, that we are in a pandemic. But it's been nine months without meaningful therapeutic intervention. It's having serious effects on the children who really need these therapies."

She added that Ethan started physio when he was about six weeks old, and he started walking at two-and-a-half. 

The children who've had no intervention, those who are only six or seven months old and have had nothing, what's going to happen to them?"

Brothers Dylan and Ethan Fitzpatrick

Martin Furey from Kilbeggan has a son, Tommy, who is seven months old and was born at the height of the pandemic in April. 

His wife found out Tommy had Down syndrome during an emergency C-section, which Mr Furey was not allowed to attend due to Covid restrictions.  

"He's one of the new additions to the Springfield set-up. The centre's staff is doing everything it can. It's the HSE I have an issue with."

Mr Furey said he and his wife know the importance of early intervention, and are very worried about the lack of support Tommy has had so far.

A social worker came to the house about 10 days after Tommy was born. "She was brilliant. We had one appointment with the physiotherapist when Tommy was a few months old. That was it."

They have stayed in touch with the physio and have sent over videos. "But you can't make a clinical judgement on how well a child is doing from a video," Mr Furey says. 

"We know the HSE have said Springfield will reopen, but they are opening up at 20% capacity. They may as well stay closed." 

He said there were multiple babies in the Longford Westmeath region who were not getting the early intervention they needed. 

"The centre closed down in March and we were abandoned." 

He said the fact trained therapists who help with children with disabilities have been redeployed is unacceptable. "It's a waste of resources. It's frustrating.

My little man doesn't have a voice at the minute. If he doesn't get these services, he might never have a voice. We are not going to lie down and just take this."

He added that capacity and waiting lists were already an issue pre-Covid. "I never thought I'd be in this situation, little did we think we would have to fight with the HSE to get help."

Mr Furey said he understood we are in the middle of a pandemic, but he feels the Government has "happily abandoned" those who are most in need. 

"Do you think they would do this to people who have a voice? They know these kids are in a minority." 

Minister @AnneRabbitte delivered the opening address today on #IDPWD to launch our new publication #20YearsOfDisabilityPolicy which will be available on https://t.co/zD8DDgc0N4 tomorrow pic.twitter.com/KNel0dSydc

— National Disability Authority (@NDAIreland) December 3, 2020

In response, the HSE said the therapists have now stopped working in the testing centre, as community swabbers have been recruited. 

"Springfield Centre Mullingar will reopen on December 7. Therapists will be providing therapeutic intervention from that time in line with Covid-19 guidelines."

The HSE also said there was a national recruitment campaign for community swabbers. "Midlands Louth Meath Community Healthcare Organisation has requested 111 community swabbers, and as of December 9, 80 community swabbers will be employed. 

"As these swabbers are employed, core HSE staff are returning to their own roles.

"The children’s multidisciplinary team have been and will continue to review the needs of each child and prioritise based on clinical needs."

When asked about the Primary Care Centre in Mullingar being opened first, the HSE said it was the pilot site in the Longford/Westmeath area for the resumption of services. 

"This centre opened on August 10. Based on the learning from this centre, Springfield Centre is reopening."

When asked at what capacity the centre would operate at, and if there would be in-person appointments, the HSE said: "We will be building it back up in line with Covid recommendations."