Mother goes it alone to meet son’s care needs
Kay, from Drogheda, Co Louth, discovered that Brendan, who has Down Syndrome, had been bullied by older service users at the centre and had been trying to put a brave face on it.
But, like a lot of parents of children with Down Syndrome, Kay was also reluctant to take her son out of the centre believing it was better than having him bored at home. It was only when she felt management had not dealt satisfactorily with the problem that she decided her son had suffered enough and removed him from the service.
Six months later, Kay found another day service for Brendan, but he remained fearful of attending and continued to vomit in the mornings.
“The manager of the centre did not want to talk to me about Brendan. He accused me of being too fussy and said my fears were contributing to his problems,” she said.
Kay has now become the first parent of a child with Down Syndrome to receive around €20,000 a year from the Health Service Executive (HSE) to establish a “microboard” — a group of family/community members, who will hire the staff to cater for Brendan’s needs.
Chief executive of Down Syndrome Ireland Michael McCormack welcomed the HSE’s decision to provide direct funding to Kay, particularly when their study found that almost three-out-of-four families of adults with Down Syndrome were not totally happy with the day service centres.
Only 28% of the 304 parents who took part in the survey, published yesterday, were totally satisfied with the overall quality of the day service attended by their children.
Four-out-of-10 parents said day services were not meeting the overall needs of their children.
The survey found some day services were outdated — they were based on group activities rather than individually assessed needs.
Counsellor with Down Syndrome Ireland May Gannon said families had told them that their family member could end up colouring, watching DVDs or even taking naps to pass the day.
Independence officer with the organisation Susan Clarke said the lack of ongoing mental stimulation could lead to bouts of frustration, boredom and depression which families had to deal with.
McCormack said all parents who felt unrepresented in directing the future of their child had been now been granted a reprieve by the HSE’s decision to provide direct funding. He pointed out that Down Syndrome Ireland would be producing guidelines on how others can model what Kay had achieved.
Anyone interested in receiving a copy of the guidelines can contact the organisation through their website at www.down.ie or by calling 01-4266500.
