Cork boy (9) with rare genetic condition told he must wait five years for physio

Orla Christian’s son Michael, from Blarney, better known as ‘Superman — Michael’s Little Steps’ on social media, was born with a rare genetic condition called L1cam syndrome and aqueduct stenosis, which resulted in him suffering from hydrocephalus
Cork boy (9) with rare genetic condition told he must wait five years for physio

Michael Barry, 9, from Blarney and his mum, Orla Christian, who said: ‘We have been told he will be waiting five years for physiotherapy... I’ve no other option but to go private and even at private it’s hard to get appointments.’ Picture: David Keane

A CORK mother, whose son was born with a rare genetic condition, has called on the Government to step in to support families of children with disabilities in securing adequate services for their children.

Orla Christian’s son Michael, from Blarney, better known as ‘Superman — Michael’s Little Steps’ on social media, was born with a rare genetic condition called L1cam syndrome and aqueduct stenosis, which resulted in him suffering from hydrocephalus.

Hydrocephalus is a build-up of fluid in the ventricles of the brain, leaving him with developmental delays.

“Michael has not had physiotherapy in five years,” Ms Christian said.

“He lost all ability to stand, to be able to walk assisted. He will never be able to walk by himself. He will need a walker or someone taking his full body weight and letting him use his legs.

“He deteriorated so much so over the last five years that in September of last year, Michael had to get releases done and he needed botox. And what really annoyed me back in September is that there was no follow-up physiotherapy at all available to him and he deteriorated again.

“He needs another surgery to release areas in his calves, ankle, and foot and again, there will be no services available to him post-op.

“We have been told he will be waiting five years for physiotherapy and Michael in five years’ time will be 14 years of age and I’ve no other option but to go private. And even at private it’s hard to get appointments because so many parents are going private now for their therapies,” Ms Christian said.

Cork Kerry Community Healthcare operates 14 children’s disability network teams (CDNTs), 11 of which are located in Cork.

Each CDNT is managed by a lead agency, namely Cope Foundation, Brothers of Charity, Enable Ireland, Coaction, and St Joseph’s Foundation.

'EQUITY OF ACCESS'

A spokesperson for Cork Kerry Community Healthcare told The Echo that one of the primary objectives in the development of CDNTs is to “have equity of access to services for all children and their families based on need and not diagnosis”.

However, Ms Christian said that issues filling particular roles within the CDNTs were having an effect on the services that children were able to access.

She said her son attends “an absolutely brilliant school”, but there were needs within the school that need to be met and that have not been met since the implementation of the CDNTs last year.

She said that, of the services offered by the CDNT that her son uses, there was half a physiotherapist part time, a part-time occupational therapist, and a part-time speech and language therapist when the team was implemented.

She added the person who stepped up to facilitate a team leader role had to take maternity leave and a physiotherapist was taken off another team to fill the interim team leader role.

“She is now on our team doing team leading, so she’s a physiotherapist who is not working with children. She’s taken away from kids in her area,” she said.

With specific reference to special schools, the spokesperson for Cork Kerry Community Healthcare said that services “have not been removed” and that children and their families “have access to the CDNT in the local area where the special school is based or, if the families prefers, the child can access the CDNT closest to their home address”.

Ms Christian said the Government needed to look at what was happening on the ground, following a recent meeting between parents and Anne Rabbitte, the junior minister at the Department of Children, Equality, Disability, Integration, and Youth. During the meeting, Ms Rabbitte promised a meeting with the principals of Cork special needs schools within two weeks.

'SIGNIFICANT CHALLENGES'

The spokesperson for Cork Kerry Community Healthcare acknowledged that the CDNTs had experienced “significant challenges as well as finite and limited publicly funded resources assigned to each network and also the ongoing impact of Covid-19 pandemic”.

They added: “There are a number of vacancies due to difficulty with recruitment and statutory leave.

“Backfilling of posts is challenging in the current environment due to lack of availability of appropriately qualified staff and demand for same across the health service.”

The spokesperson said there were prioritisation and caseload management systems in place, including assessment and intervention pathways, with the demand for assessment and intervention outweighing the resource capacity of the teams.

“In practice, children with the highest priority of need can access services and other children with a lower priority of need are placed on the appropriate waitlists,” they said.

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