Parents asked to carry out therapies on their children as wait lists persist

Parents of children with disabilities are being ordered to attend training courses so they can carry out therapies on their own children who remain on long waiting lists. Picture: PA

Parents of children with disabilities are being ordered to attend training courses so they can carry out therapies on their own children who remain on long waiting lists.

With 34,000 children now on community health waiting lists, parents say they have been told that if they do not avail of these courses, their children will be taken off HSE lists for therapies such as speech and language and physiotherapy.

Hitting out at the HSE, disabilities minister Anne Rabbitte said: "It’s simply not good enough that parents are still waiting several months or years to access crucial therapeutic supports for children."

She added that the HSE has not fully explained a shift to a new system of Individual Family Support Plans to parents, which has caused "difficulties" for families.

"Understandably, for parents, it looks like they’re being asked to do more while therapies don’t appear to be materialising on the ground. This can’t be allowed to continue and I want to see this strain eased.

"Parents are under pressure and some are really struggling to support their children. As I’ve said to the HSE a number of times, their communication with parents, in particular, has been poor," said Ms Rabbitte.

She is now working to fill over 270 vacant posts to address current waiting lists.

At breaking point

One mother, who has three children with disabilities, said parents are now at breaking point as they are being asked to take on several professional roles.

"If you say no to a course you are told that you will be taken off the waiting list. So if you don't do the course then you're not going to get the service as you are deemed as not needing the service," she told the Irish Examiner.

"I have no problem working alongside a therapist, but I am not a therapist. Things at home can be quite stressful.

"I'm one person, but you are expected to do the job of eight or nine different people and you just can't do it; I have suffered burnout in the past."

Sinn Féin's disability spokesperson Pauline Tully has been contacted by concerned parents from across the country.

"Many parents have already taken the courses," she said. "However, they are basically being threatened that if they do not take the courses, they will be removed from the list. That is terrible. It should not be happening. Parents have welcomed the courses alongside therapeutic intervention from a professional, but not as an alternative.

Parents are concerned that doing the work with the child on their own could even further harm their child."

Citing the new Progressing Disability Services for Children and Young People (PDS) programme, which has reconfigured the way services are delivered, a spokesperson for the HSE said: "The child’s family and those who are with them every day are the most important people in their lives. Internationally, there is widespread change, based on growing evidence, from providing disability services ‘to’ or ‘for’ children towards supporting and empowering families to work with their child in their natural everyday environment to achieve and retain new skills."

It comes as a High Court judgement has found that the HSE is falling foul of the law in how it conducts its assessment of need process for children with a disability.

The High Court judicial review has quashed the assessments of two young children and said there was a "patent failure to properly construe the breadth of the assessment obligation", even if the HSE was in an "invidious position" whereby it had "a legal obligation to assess needs without necessarily having the means to address them”.