'She doesn't have a friend in the world' — this is why Leah Forde needs school

Leah Forde was sent home in October — her ‘crime’, a rare chromosome disorder resulting in severe developmental delay

Leah Forde and her mother Michelle at home in Cork. Leah has missed 100 days of school and there are no plans in place to allow her back. Picture: Denis Minihane

Today marks a sad and frustrating anniversary for Leah Forde — she has missed 100 days of school and there are no plans in place to allow her back.

The 10-year-old was sent home in October — her ‘crime’, a rare chromosome disorder resulting in severe developmental delay. She is not able to walk or talk and is fed on a special blended diet using a tube into her stomach.

It is this diet and feeding procedure that has led to the school setback for the young Cork girl. She had been attending St Paul’s Special School in Montenotte, and loved it. In special schools, special needs assistants (SNAs) always assist with feeding but when it is complex, for example a blended feed, it is a nurse's role to administer that feed. 

And while the feeding doesn’t take long (approx 20 minutes each time), the school nurse can’t be committed to the specific time needed three times each day as they have to be available to tend to the 90-plus other children with additional needs.

Leah’s parents, Michelle and Declan, say it’s not fair that their child is missing out on so much — she has been at home for almost six months now, having already missed a lot of school due to lockdown as well health issues such as a scoliosis operation, and infections. Her mum Michelle said: 

Leah has missed out on almost a whole year of her life going to school. She's 10. And school is what brings the best out in Leah. Being at home is not fair on her, it’s like groundhog day for her.

Anne Hartnett has been principal of St Paul’s since 2014 and has worked in the special education sector since 1994. She says she has been swamped by bureaucracy in trying to resolve this issue.

“It broke our hearts to have to send Leah home. It is an issue that would affect so few children so it would be ‘cheap’ to solve. 

"I have contacted Josepha Madigan (Minister of State for Special Education and Inclusion), the Department of Health, and the Department of Education, and the National Council for Special Education and each say it is the others’ responsibility. This is for Leah and for all the ‘other Leahs’ coming up behind her. Who is responsible for special school nursing? It's because of that that Leah Forde has gone without school for 100 days."

Michelle says she hopes Leah could eventually communicate if she gets back to school.

“Leah’s eyes light up when she is happy. I know she can understand some things I say. Who knows, one day, if she is permitted to go to school, they will see if she is a candidate to learn how to use an eye gaze system. 

"One day, Leah might be able to answer yes or no to all the questions I ask her every day, such as, ‘do you have a pain anywhere?’, ‘do you love mommy?’, ‘is Leah happy?’"

A Department of Education spokesperson said: “Nursing support for children with complex needs in school is provided directly by the HSE or through a HSE-funded provider. 

"Where a school has identified children with complex needs who require nursing support, they are directed to the HSE. Department officials will be meeting with the HSE shortly on the wider issue of the availability of nursing supports in schools.” 

The HSE has yet to respond.