FAMILY FIGHTING FOR SERVICES FOR DAUGHTER WITH MICRODUPLICATION
A South Sligo family are at the end of their tether as they continue to fight for services for their three-year-old daughter.
The toddler is one of a handful of children in the country to be diagnosed with microduplications. The rare genetic condition means that the child has a tiny extra piece of chromosome 15. Microduplication features are often very similar to that of autism, but the family have not yet received a diagnosis of autism, which would potentially allow them to seek more services for the child.
Having noticed that something was not right when the child was born, her mother grew concerned and sought help. Between the age of 14 and 16 months, she was diagnosed with microduplication and was referred to Early Intervention for developmental delays.
“We met with the team and they said she might need help,” claimed the young girl’s mother.
“I can’t emphasize enough the fact that she has three older siblings, she should be coming on more than she is, and she probably should be more advanced than they were at her age,” she added.
The girl had no words at 15 months old and used to grow so frustrated at her inability to speak that she would bang her head off the wall and the floor. Her siblings have borne the brunt of her frustrations and have to put up with their younger sister biting, pinching and hitting them for no reason whatsoever.
“She is just unpredictable. There is no pattern to her behaviour. Some days she’d put anything in her mouth, the next day she wouldn’t,” she added.
“If you could predict when it would happen you could defend against a meltdown. If I knew the trigger point it would be easier, but there is no consistency at all,” her frustrated mother added.
After visits to the Early Intervention team, the family saw an Occupational Therapist before eventually getting appointments with CAMHS, the Child and Adolescent Mental Health Services.
During the first appointment the young girl was assessed and videos were shown of her meltdowns. There was a second appointment with CAMHS, but the family claim they have been left in limbo ever since. They have been offered no assistance and feel as though they are being passed around as they look for help.
Previously, they were given one hour’s help a week thanks to the Sligo Family Resource Centre, but that was later removed. Although it was only one hour per week, it was a huge help to the child’s mother who valued the hour’s break a week.
Furthermore, the family of six are living in a three bedroomed house. The parents share a bedroom with their three-year-old daughter and they say she needs a quiet space of her own.
They claim that an Occupational Therapist could not identify any sensory issues and therefore a report could not be issued to Sligo County Council in relation to the provision of an Adaptation Grant.
The child’s mother claims that she was told that there are children with more complex issues.
“To me, she is complex. We then decided to get a private Occupational Therapist’s report. The OT witnessed the behaviour of my child. She wrote all this down on the report and said that she needs her own space and it would be good. But the council are not accepting it because the OT is not a HSE employee. Nowhere does it say that it has to be done by a HSE employee.
“I’ve provided the council with a report. She’s been signed off by Early Intervention, we’re waiting for CAMHS appointments.”
The family feel as though they are left in limbo.
The HSE said they are not in a position to comment on individual cases.
In response, Sligo County Council said: “Sligo County Council cannot comment on individual cases. However under the guidelines for dealing with Housing Adaption Grants for People with a disability received from the Department of the environment, Community and Local Government,
“In the case of a Housing Adaption Grant application in respect of a child with a disability, who is aged under 5 years, local authorities should note the provision of the SIU Circular 2/07, which governs liaison between the Housing authorities and the Health Service Executive in respect of people who have been assessed under Part 2 of the Disability Act, 2005 and have been identified as likely to require housing support.
“In such cases, local authorities should confirm if the child has undergone an assessment of need consistent with Part 2 of the Disability Act, 2005.
“Where an assessment has taken place, authorities should refer to the Occupational Therapist recommendations contained in the assessment report as provided by the HSE Liaison Officer.”