A mild diagnosis may sound great but it can dramatically affect what resources a child with Down syndrome can access for the rest of their educational life, writes SHEILA WAYMAN
JOAN O’DWYER was filled with a sense of panic when a psychologist told her that her son Lloyd, who has Down syndrome, was “doing very well” in his educational assessment at the age of five.
While part of her was pleased for him, she knew if his intellectual disability were to be classed as “mild”, they would lose access to specialised support services they had been receiving since he was a baby and he would have no entitlement to resource teaching hours at a mainstream national school.
She kept Lloyd up late that night at their Bray home in Co Wicklow and woke him early the following day, when the assessment was being concluded last March, in the hope that tiredness might impair his performance. But to no avail – he still came out as having a “mild” learning disability.
As a result, she and her husband, Robert Bongers, were told Lloyd would be discharged from the St John of God Carmona Services in Glenageary, Co Dublin, on October 31st.
In advance of that date, he was referred to the HSE for speech and language therapy and has received one block of weekly sessions over six weeks. She is still trying to find out what other help he might get through the overstretched community services.
Meanwhile, Lloyd’s peers, who were adjudged to have a “moderate” learning disability remain under the care of Carmona Services, through which, even if they attend a mainstream school, they have access to a psychologist, physiotherapist, occupational therapist, speech and language therapist, a weekly friendship club and summer camp. Their families also receive support through respite care and events such as workshops for siblings.
“We were absolutely devastated,” says O’Dwyer. “A part of you is happy that your child did well, but devastated that he is cut off from his peers and we are cut off from our support network – everybody who supported us since he was born.”
Lloyd, who is now six and has two older sisters, started in junior infants at St Patrick’s Loreto Primary School in Bray, Co Wicklow, in September, where he has a special needs assistant to look after his care needs. There have been issues, says O’Dwyer, but he seems happy enough.
She believes integration in mainstream school is the best option for him; however, she is very frustrated that he is not guaranteed one-on-one time with a resource teacher.
Although he has been assessed as having “moderately unintelligible speech”, his IQ is too low to qualify for resource hours under speech and language difficulty, but too high to qualify under general learning disability. Children with a “moderate” learning disability are entitled to three and a half resource hours per week.
Lloyd is receiving learning support through the 760-pupil school’s general allocation (based on roll numbers) for all children with literacy and numeracy issues. This is being offered to him in such a way as to best meet his individual needs, says the school.
Like other parents in her position, O’Dwyer has looked into the possibility of getting an additional diagnosis, such as dyspraxia, which would guarantee him resource hours. “Down syndrome on its own is not enough.”
That is what Down Syndrome Centre, a charity working to provide improved levels of information and service to parents of children born with Down syndrome, wants changed. It believes Down syndrome should be regarded as a baseline disability that automatically qualifies a person to receive life-long services, as well as resource hours in mainstream school.
“Despite the level of IQ, the child will always have this physically identifiable, intellectual disability that sets them aside from others,” says the spokeswoman for the centre, Sheila Campbell.
“The fact that all children with a mild learning disability – Down syndrome or not – only receive support teaching from general allocation and not hours linked to their disability is unacceptable,” she says.
The consequences for children with Down syndrome assessed as in the “mild” category depend on where they live and the policy of their local service provider. However, most parents are aware that if their child receives a “mild” diagnosis, they may no longer be eligible for intellectual disability services – the extent of which also vary widely from region to region.
“As a result,” says Campbell, “we have heard of parents who have gone to such extreme lengths as keeping their children up all night before the tests or having their children fitted with hearing aids, or trying to get a diagnosis of dyslexia to make sure the child has an advanced level of disability.”
If, on completion of an early childhood programme, a service provider discharges all children with a mild learning disability into community services, why does the centre think that children with Down syndrome who fall into this category are being particularly hard done by?
The assessment is based primarily on producing a rating of the child’s IQ level and not on an overall assessment of his or her needs, Campbell replies, and the community service is inadequate on many levels for someone who has specific special needs.
She uses an analogy to sum up the situation: “You are attending a private swimming pool for lessons with a whole group of other learners. But, on foot of a test, you are considered ‘too good’ for the class and told that you will have to leave and attend a community pool where you will get a lesson, maybe every three months, only if there is an instructor employed at that time and it may well be one who teaches the front crawl when you need to learn the back stroke.”
Campbell adds: “Children with Down syndrome who have limited verbal ability are being diagnosed in the mild spectrum and are expected to attend mainstream schools where poor communication will cause them obvious disadvantage before they may have even hung up their coats in the morning.”
The assessment is supposed to be a planning tool, says Alison O’Meara, education officer with Down Syndrome Ireland, so she finds it perverse, as a psychologist herself, that parents are in a situation where they are hoping for a label of greater severity for their child because “it has turned into this golden ticket that unlocks resources”.
“The purpose of a psychological assessment in its true sense is to plan for the child and to guide services and to guide teachers. Now it has become a very, very high stakes decision; the category that is written on the report can go on to affect what resources a child accesses for the rest of their educational life.”
Is it not reasonable that resources are focused on those with the greatest need? “Children with Down syndrome are only classified by their level of intellectual disability,” she says. “The difference between a child with a mild learning disability who has Down syndrome and a child with a mild learning disability who does not have Down syndrome is that the child with Down syndrome will more than likely have additional needs, including speech and communication and motor skills. We feel children’s additional needs are being overlooked.”
Any child diagnosed with autism gets resource hours, regardless of their level of intellectual disability, she points out. “They don’t query whether you are mild or moderate – we would love to see the same for people with Down syndrome.”
Policies of service providers seem to vary and not all children assessed as having a “mild” intellectual disability are excluded from their care. St Michael’s House, for instance, which operates in parts of north, east and south Dublin, continues to provide multidisciplinary support to all children with Down syndrome when they move on from its early years programme – the majority going to mainstream schools. Other children diagnosed with a more straightforward mild learning disability may be discharged.
“Down syndrome is an underlying biological condition and there may be needs that are not related to their level of intellectual disability,” says a spokesman for St Michael’s, which has about 535 people under 18 years of age within its services, of whom 30 per cent have Down syndrome.
The director of the St John of God Carmona Services, Phil Gray, says its remit is to provide services for people with intellectual disabilities ranging from moderate to profound. As a result, she confirms, if a child who has progressed through the early service is assessed in the mild range of intellectual disability – “which is a fantastic achievement for a child” – he or she no longer comes within its remit.
When this arises, it is extremely stressful for the families, she acknowledges, and also for staff who have supported the child through the early years. “Parents can be angry.”
It is made clear from the outset that this is the situation, she explains. “People do all sorts of things to try to make sure their child does not assess in the mild range.”
Changing the system would require more resources for all children with a mild learning disability. If Carmona were to provide services to children with Down syndrome and not to other children with a mild learning disability, she adds, that would be discrimination.
What parents like Joan O’Dwyer find hard to understand is why the system jeopardises the outcome for children such as Lloyd who, by virtue of their “mild” intellectual disability, should have the greatest potential. “He has a chance to be independent, even to be a taxpayer in the future.”
Although delighted with the Carmona services, with whose help she could work on maximising Lloyd’s abilities, she remarks: “It is a case of ‘be careful what you wish for’.”
The Down Syndrome Centre will host a public meeting to discuss the issue of children with a diagnosis of mild intellectual disability on Tuesday, November 16th in the O’Callaghan Hotel, St Stephen’s Green, Dublin, at 7.30pm.
DOWN SYNDROME: THE FACTS
Down syndrome is a set of mental and physical symptoms that result from having an extra copy of chromosome 21.
It is a lifelong condition that was named after Dr John Langdon Down who identified the syndrome in 1866.
About one in every 600 babies born in Ireland has Down syndrome.
Women aged 35 and older have a greater risk of having a child with Down syndrome, so as the average age of women giving birth rises, the incidence is expected to increase.
'MY DAUGHTER IS BEING DISCRIMINATED AGAINST BECAUSE SHE CAME OUT WITH A MILD ASSESSMENT'
When Gerry and Orla McCabe’s youngest child, Caoimhe, was born with Down syndrome five years ago, they were referred to a service for people with intellectual disability run by the Daughters of Charity on the Navan Road in north Dublin.
At the St Vincent’s Centre, she came under the care of a multidisciplinary team, which included a nurse, occupational therapist, speech therapist, physiotherapist and social worker.
She did not wake up one morning and suddenly no longer need these services, says Gerry. Yet, because she was assessed last March as having a mild general learning disability, she was discharged from that service provider, which caters only for those whose intellectual disability is classed as in the range “moderate” to “profound”.
They were told it would be more “appropriate” if she received her multidisciplinary support from the HSE – but such community support is elusive.
He says he should have been jumping around the garden with joy at the news that his daughter’s intellectual disability was “mild”, but instead he knew he was going to have to be fighting for everything for her for the rest of his life.
After four and a half years of support, the McCabes feel bereft in having no one to turn to – “just take simple things like Caoimhe needing orthopaedic shoes, where do I go to now?” Gerry asks.
“She was born with low muscle tone and has had an awful lot of hard work done to get her where she is today. All of a sudden, because of her mild assessment, she is getting no physio.”
The only service she is receiving is speech therapy through the school she attends, St Michael’s in Glenmaroon, for pupils with a mild general learning disability. “She’s very quiet, has verbal dyspraxia, and we felt she would be smothered in a mainstream school,” says Gerry.
Assistant chief executive of the Daughters of Charity, Denis Cronin, says its service complies with the Government report Needs and Abilities(1990), which recommends that children with a mild learning disability should access generic services.
Although Caoimhe has been referred to community services, the McCabes have recently got a letter from the HSE saying it cannot provide her with occupational therapy, as its general community paediatric services treat children in mainstream schools only. It directed them to a list of private occupational therapists. He expects to get a similar response to a referral for physiotherapy.
For the past two years the McCabes have been supplementing Caoimhe’s monthly speech therapy with an extra hour a week at a cost of €120. Now they face having to pay for further help for Caoimhe.
“I have been told her pencil grip is poor and now I have to start accessing private occupational therapy,” says Gerry, who was made redundant from his job after 20 years as an aircraft maintenance engineer with SR Technics at Dublin Airport last year and is now running a car maintenance business. Orla is a part-time catering manager and they have two older sons, aged seven and 10.
They are also paying to retain four hours’ home support a week, which was being funded by the service provider, and they no longer have respite care available to them.
“My daughter is being discriminated against because she came out with a mild assessment – that’s how I feel about it,” says Gerry. “The system has failed her.”
