by Louise Doyle
A MOTHER whose son has Down Syndrome has spoken of her upset and distress after being told on two occasions by HSE professionals that children with the condition can be “quite lazy”.
The mother-of-two has accused the HSE of discrimination for its failure to put in place a plan for her three-year-old pre-school son to help him with additional needs.
The mum, who is a teacher, told of how she recently attended an annual HSE care plan meeting, where a number of senior HSE staff were present, to discuss the needs of her son.
She said she was left “shocked” and distressed” after being told at that meeting that “children with Down Syndrome can be quite lazy” and “everyone will tell you that children with Down syndrome are lazy, they just are”.
It was the second time such comments were made, as the mum told of how the professional made the same remark to her in her own home in front of her son at a meeting to discuss a forward plan of resources and supports for her child to help him in a fundamental area of development.
Speaking to the Donegal News, the upset mum-of-two said she believed the HSE were discriminating against her son because he has Down Syndrome.
“My son has Down Syndrome and when he was born he had holes in his heart. He had to be administered CPR when he was six days old. Since his third birthday he had been doing really well. Both myself and his dad have always made sure he is healthy and thriving. We have had lots of support from Donegal Down Syndrome and the HSE in the past.
“I asked if a plan could be put in place before September before he went to pre-school as there is one area of development he is not where he should be for a three-year-old. His dad and I were told in our own home in front of our son that children with Down Syndrome are lazy.
“That same comment was made at a meeting in a primary care centre when I was told that my son did not need a plan because children with Down Syndrome can be lazy. I remained calm, explaining that my son was three years of age but he is at the level of a 12 to 18 month old. I said he has been at this stage for a year, and I was again told that children with Down Syndrome learn differently and that there is lots of research proving this. The research could not be produced to me at the meeting.”
The woman said she was horrified when upon asking at the meeting that if her son did not have Down Syndrome would a plan be in place for the additional supports he needs, was told that it would.
“I am so shocked and I am still so upset. My son has been in need of a plan for a year and I have yet to receive an appointment. It is heartbreaking because he is very resourceful and capable and he has picked up other ways to help himself.
“He is very capable, yet the experts who are supposed to help him achieve the best he can, have labeled him as lazy and not worth the time to help because he has an extra Chromosome.
“This is massive discrimination and an attitude problem on the part of the HSE. At the meeting in the primary care centre when the comment was made, there were three other staff members there and not one of them supported me as I tried to stand up for my son. I feel that all staff now need to be scrutinised.”
The mum said she has secured an appointment with a private therapist on December 1.
On Thursday, the HSE issued an apology to the family over the remarks about Down Syndrome children made by one of its staff members.
It states: “The concerns raised are taken very seriously and an investigation into same will take place.
“The HSE apologises to the child and family in the case that the level of service received was not at the level the family would wish it to be.”
The spokesperson added the HSE Children’s Disability Network Teams (CDNTs) provides specialist support and services for children with complex needs arising from their disability 0 to 18 years.
“With regards to comments posted on the official Down Syndrome page on Monday, October 30, Community Healthcare Cavan, Donegal, Leitrim, Monaghan and Sligo (CH CDLMS) wishes to reassure all parents attending the CDNT services that it is never their intention to cause distress or worry to any family.”
However, the mum said its words rang hollow.
“They have not apologised for their comments.”
Meanwhile, Chairperson of Donegal Down Syndrome, Gina Grant said she was “beyond appalled” by the remarks.
She said the family must receive the apology it deserves, and that they should be provided with a planned list of services to assist the development of their child.
“The family are very upset. They feel completely failed by the State. They feel this person has placed no worth on their child.
“There has been no apology from the HSE on these hurtful comments.
“It is disgraceful that someone working in disability support services, to help people with a disability become the best person they can be, to not only think such a thing but to vocalise it to the parents of the child with Down Syndrome and to the person with Down Syndrome.
“There has been no apology from the HSE. They haven’t stated that the comments should not have been said and that these comments do no reflect the attitudes of the CDNT, or that they would take actions to ensure this does not happen again.
“It is beyond maddening. It is complete neglect. CDNT is early prevention and early prevention is needed for people with disabilities.”
Ms Grant said Donegal Down Syndrome has been contacted by other families who have had a similar experience.
The organisation is now calling for the HSE to have a full review into the matter.
“It is very difficult to comprehend that this has happened on more than one occasion.”
Down Syndrome Ireland also issued a statement saying they are deeply concerned by the comments and said harmful language and attitudes such as these have no place in a modern healthcare system.
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