‘They have forgotten about our children’ - Families of disabled children plead for Special Care Unit to reopen
Parents of children with profound intellectual disabilities who say their lives have been turned upside during lockdown are calling on for the reopening of a special care unit in Johnstown.
Describing the closure as having ‘a detrimental affect’ on their children’s well being and with no road map for the reopening of day services, SALLY HARDING spoke to three families who say they feel like their vulnerable sons and daughters have been left behind
LUKE & THE MORGAN FAMILY - MORNINGTON
The frustrated father of a severely disabled teenager from Mornington has told of his heartache at how his son has deteriorated since the special care unit he attends closed due to coronavirus restrictions.
He is now calling on the HSE to provide clarity as to when the facility that is linked with St Mary’s Special School will reopen.
Des Morgan says he feels like his fourteen-year-old son Luke who was born with Succinic Semialdehyde Dehydrogenase Deficiency (SSADH), an ultra-rare neurometabolic disorder that has left him developmentally delayed, non verbal and suffering with severe epilepsy has been “forgotten” by the HSE.
Luke has been attending The Special Care Unit in Johnstown for the past eleven years along with eleven other children and full time carer dad Des says the teenager has seriously regressed as a result of the closure.
Despite a number of attempts from the Mornington father of four to contact the HSE local management on this issue, there has been no clarity in relation to the reopening.
“Before lockdown Luke was mobile and could potter around the place but now he has totally lost his mobility, he has basically gone from a mobile child to a vegetable.
“He can’t walk, he can’t move, he can’t get off the ground, he can’t stand. It’s because of the lack of routine in his life.
“Luke was born with a genetic metabolic disorder, SSADH which means he is missing an enzyme in his brain that has caused toxicity to his system.
“There is only three other cases in Ireland of his condition and only 190 confirmed cases in the world.
“He has severe epilepsy, he has drop attacks every day, he is developmentally delayed, he can’t communicate, he is doubly incontinent, he has very low muscle tone and suffers from anxiety.
Chris describes being “frustrated” at having no clear picture as to when the children can return to the unit.
“The HSE is refusing to enter into dialogue with any parent, we have no plan on when the unit is going to reopen,” he said.
“For public safety I know we had to comply with all of the rules but the lack of communication from the HSE local management team has been disgraceful.
“The guide was published last week for the reopening of adult services and we have nothing for children,” he added.
“The special care unit is considered an educational facility, to get into that unit it goes through the Department of Education now but years ago it was just through the HSE because the children have such complex medical needs.
“So from September to June like a normal school it is an education facility but in July and August it is a nursing led facility.
“I lobbied TDs and councillors in order to get the HSE to enter talks, but despite all their efforts, it was to no avail.
“We are on day 120 now and Luke is a total vegetable, he has no quality of life.
His regression has been so evident - he cannot walk anymore, can barely stand and his anxiety is very distressing to watch.”
The Mornington dad expressed his “disappointment” over no plan for the “vulnerable children” who attend the SCU.
“It is extremely frustrating, the road map was announced on the first week in May by the government and there was nothing about disabilities in it.
“At this stage the HSE local management should have started to put plans in place to reopen the unit in line with Covid guidance but they did nothing, they sat on their laurels and forgot about the children.
“They redeployed their staff who are now covering holidays in the adult services.
“They basically got rid of the staff in the SCU and forgot about the children.
“The lack of direction and compassion from the local HSE management is just mind boggling.”
“Even if we had a date to aim for, that would be progress but I, and other parents, are disgusted by the way we have been treated by HSE management.”
‘They have a sensory room and circle time and he enjoys that stimulation but sadly he is not getting that now’
CONOR & THE MURPHY-TRAYNOR FAMILY - DULEEK
Thirteen-year-old Conor Murphy Traynor from Duleek has Pallister-Killian Mosaic Syndrome, a rare genetic disorder that has left him wheelchair bound and unable to walk or talk.
He has been attending the SCU since the age of four and is missing out on vital resources according to mum Elaine.
“He misses school, he loves the teachers. They have a sensory room and circle time and he really enjoys all of that stimulation that sadly he is not getting now.
“He is very sensitive to touch, he doesn’t like his hands being touched, he’ll pull away from you and they have worked on that since we went there and I can see it improving as the years go on.
“His teacher had been getting him to use a tool for communicating. They record something simple like the word hello on a device called a Big Mack Communicator so if someone walks into the room he can press that button and the teacher was only telling me that he had been starting to use it himself without being prompted.
“So that’s after setting him back because we don’t have that device at home.
“He also used a special needs stander as well and we don’t have one of those at home. It’s for stretching his legs and his muscle because his legs get quite tight from sitting in his wheelchair so he is missing out on that too.”
‘It’s not fair on her to be denied such essential services’
AIDEEN & THE HERDMAN FAMILY
- NAVAN
Chris Herdman’s thirteen-year-old daughter Aideen from Johnstown who needs 24/7 care also attends the unit.
The youngster has Global Developmental Delay, is on oxygen and suffers from seizures.
Speaking about how the closure has affected his daughter, Chris said:
“Aideen has been going to the special care unit for the past ten years.
“My wife and I feel abandoned and neglected.
“Aideen needs 24/7 care, she is on oxygen all of the time and she is on a cardiopulmonary bypass machine at night for her lungs.
“It's not fair on her and children like her to be denied these essential services,
“They are one of the most vulnerable people in society and the added extra stress put on parents is not fair and extremely stressful on a family unit.
“The HSE and the Government seem to have forgotten all these children, we have had no contact to say when they hope to reopen
“Aideen is in a wheelchair; she can’t communicate but you can get a smile out of her. She knows what’s going on around her, if you brought her somewhere that was lively or something was going on she will respond."
Routine is key for children with intellectual disabilities as the distraught dad explains:
“The children who attend this unit need to get back to some sort of structure. She was used to going down for 9.30am and being there until about 3pm now her whole routine is gone and she is at home all of the time now.
“She’s missing the interaction with the nurses and the physio and sensory work that they did with her.
“Schools close every year for the summer and the SCU remains open as a nursing facility for the children, so why are they not opening now?"
HSE Response
“The HSE acknowledges the pressures that individual children and their families are experiencing during this extremely difficult period.
“The Special Care Unit (SCU) in Johnstown, Navan, is an educational placement facility attached to St. Mary’s Special School.
“Similar to all other schools, the SCU has been closed due to Covid 19 and the reopening will be in line with all schools and public health guidance.
“It is our understanding that St. Mary’s Special School has written to parents on 26th June 2020 regarding the July 2020 provision not being provided under the Department of Education.
“Staff from the HSE provide nursing and carer support to twelve children attending the SCU in St. Mary’s Special School.
“The HSE has been in contact with St. Mary’s Special School regarding formulating plans for children’s disability nursing and carer services for the potential reopening plans in September 2020.
“The HSE will be in contact with the families of the children usually in receipt of August Summer Provision for the last two weeks of August 2020.”
What's your view? We'd love to hear from you. Email: Sally.Harding@meathchronicle.ie