Vulnerable children suffering ‘frightening’ levels of regression due to shortcomings in services

Many vulnerable children with complex needs are experiencing “frightening” levels of regression because they cannot access school-based summer programmes, according to parents’ groups.

The summer programme, first established on foot of a High Court case which recognised that children with severe needs were losing vital skills over the summer holidays, has been expanded in recent years.

However, about 80 per cent of the 8,000 children in special schools did not participate in the programme last year, based on official figures released under the Freedom of Information Act.

Only 410 children in special schools received the recommended four weeks of education during the summer programme.

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Miriam Jennings of the Special Needs Schools and Classes Parents Group, which obtained the data, said many children were unable to access the programme because it was not available in their special school, even though it was originally established for children with complex needs.

She said a summer programme provides crucial access to routine and stability during the summer months.

“Their essential routine stops abruptly and they cannot understand why. They cannot communicate their multiple worries and uncertainty as so many are non-verbal. They regress rapidly,” she said.

“There are no summer camps, play dates or family holidays during the nine or 13 weeks away from school. The long break causes an increase in episodes of sensory overload, regression in skills and increase in anxiety, self-injurious behaviour, aggression towards parents and siblings, destructive outbursts and absconding.”

Ms Jennings, speaking at an Oireachtas committee on autism, said many children who cannot access the care and education they need end up being “fast-tracked” into residential care when the finish school.

While a home-based alternative is available to children who cannot access the programme, Ms Jennings said this was not suitable given that many children with autism and intellectual disabilities cannot cope and will not tolerate strangers in their home.

The parents’ group said a model for Irish authorities to follow is a special school summer programme in Malta which uses a combination of school staff, therapists and students to work with the children.

Oireachtas committee chairman, Fine Gael senator Micheál Carrigy, said it should be mandatory for special schools in Ireland to offer the summer programme and questioned why so many schools opted not to run it.

The committee also heard of “blatant failures” on the part of the State to meet the basic health and education needs of children with autism and other disabilities.

Karen O’Mahony, a co-founder of the Rainbow Club, said child and adolescent mental health services need to to be reviewed urgently because of a lack of proper monitoring over children in receipt of medication.

She said her 16-year-old son has been on a form of antipsychotic medication for five years without seeing a doctor or having the prescription reviewed.

Ms O’Mahony said he was ‘signed off’ on the medication when he was 11 years old, but has since been through puberty and is over 6ft tall without ever being monitored. She said many other young people with complex needs were in similar circumstances.

Fine Gael TD Jennifer Carroll-McNeill expressed shock that Ms O’Mahony’s son had been “completely forgotten about” and said it was “criminal negligent” to not properly monitor children in these situations.

Ciara Jones of the Autism Support Hub, based in Dublin 15, said many families in crisis are trying to access appropriate school places or vital therapeutic intervention.

“These services are seen as a luxury, but they are the difference between our children thriving and barely surviving. This is the reality for many of us,” she said.

Margaret Lowndes of the Dublin 12 Campaign for Inclusion added that families were also being “left in limbo” with no support for up to two years when children were referred to disability network teams for assessment. There was forcing many to rely on private services.

“There is an increased demand on private therapies due to the failure from the HSE to provide timely interventions for children,” she said. “This time last year a 45-minute session with a private occupational therapist would cost €100. This year, that same session will now cost €120,” she said.