A new study has found that the majority of children with Spina Bifida do not have access to a multidisciplinary team clinic.
The study by Temple Street Children's University Hospital says that services for 500 children with the condition are grossly under-funded.
It says that this is the case, despite 69% of children with Spina Bifida over three years of age using a wheelchair, 93% over five years requiring continence support and 64% having a shunt to manage hydrocephalus, a device which drains extra fluid in the brain.
The study says the care of children with Spina Bifida should be co-ordinated by a Spina Bifida nurse, neurosurgeon, paediatrician, physiotherapist, occupational therapist, urologist and orthopaedic surgeon.
Dr Jane Leonard, consultant paediatrician and Spina Bifida service leader at Temple Street Children's University Hospital, said a diagnosis of Spina Bifida in a newborn is devastating for any parent but an added and life-long burden for parents is the constant struggle to navigate disparate services and fight for access to those services.
The study found that half of school age children with Spina Bifida suffer low self-esteem, often influenced by continence and weight difficulties and there is limited psychological support.
Around 34 children are born with Spina Bifida each year in Ireland and an estimated 500 are living with the condition.
The Health Service Executive said that services for children with Spina Bifida have been evolving over the past five years.
It said that consultant, physiotherapist and occupational therapist supports have been put in place.
The HSE said further work is required to ensure that this develops to include a full multidisciplinary approach and this will be part of service planning for 2015 and beyond.
In addition, it said that Section 38 organisations, such as the Central Remedial Clinic, Enable Ireland and others are funded by the HSE to provide a range of supports and services for children with all disabilities, including Spina Bifida.
The Children's Hospital Group says it is working with the HSE to progress the continued development of services for children with Spina Bifida/Hydrocephalus.
It said the Group has prioritised the business case in its discussions with the HSE in the estimates process for the national service plan in 2015.
It said that the development of services will be aligned with the National Clinical Care Programme's developing model of care for paediatrics.