Parents to protest until ‘something changes’

PARENTS of children with additional needs in Cavan who staged a protest in the town centre vow to continue to protest “until something changes”.

Around 25 parents, grandparents and other family members of local children with special needs gathered outside the offices of the new Cavan Primary Care Children’s Services centre on Main Street to protest on behalf of their children.

Those The Anglo-Celt spoke to said their kids’ childhoods are being wasted on waiting lists for assessments and essential therapies. Parents and carers argue their children are being denied their basic rights.

In the first instance, they demand diagnoses and appropriate assessments of need for each of their children. Without a timely assessment of need children cannot be referred for essential therapies that would improve their quality of life.

Typically, the therapies required include one-to-one speech and language therapy, psychology, dietician services, occupational therapy, and educational support.

However, parents in Cavan and in many other so-called “black spots” across Ireland are awaiting both the assessment of need and the follow-up therapies.

Just this week, new figures released by the HSE confirms there are currently 16,593 children waiting for assessment of need (AON) completion after the first half of this year.

In HSE Dublin and North East, which includes most of County Cavan, there are currently 5,204 children overdue for AON completion, with 4,386 waiting over three months. In Cavan the service provider for CDNT is Enable Ireland.

Cavan parents say they are already exhausted as full-time carers to their children but have to fight at every stage of their children’s development. The protest in Cavan town is just the latest battle.

Serena Dawson is mum to three children including Nathan (7) and Dara (3) who both have a range of complex needs. Nathan was diagnosed as autistic aged two. He also has a mild intellectual disability. Dara has already been diagnosed with autism and global development delay, which means he is not meeting developmental milestones.

Speaking at the protest Serena said: “Four and half years after Nathan’s diagnosis and nothing. Nathan needs speech and language and occupational therapy. He also needs to be seen by a psychologist and a dietician.

“I believe he also needs an ADHD assessment, but CAHMS (the Child and Adolescent Mental Health Services) refused to do the assessment because Nathan is not in receipt of the one-to-one therapies.”

When asked what difference the therapies would make to Nathan’s quality of life, Serena said: “At age eight, his vocabulary is very limited. If he had early intervention from a speech and language therapist, he would be fully verbal now and we could communicate with him.”

As the protestors displayed banners with slogans including ‘We deserve a change not a waiting list’ and ‘No child left behind. For real this time’ passers-by stopped to offer words of support while cars and vans beeped their horns and saluted the protesting carers.

Heartbroken, exhausted and fearful for their children’s futures, the parents who were on the protest said they will continue to protest until their children get what they deserve.

“We are here for the day,” Serena said. “But we will keep coming back until something changes.”

Another parent, Rachel Kearns, had to go to court to get her son Keelan an approrpriate assessment of need. She is currently paying privately for speech and language therapy for Keelan in Swords, and for private occupational therapy in Cavan. She is protesting to get her son a suitable school place.

“Everything to do with special needs services for children is wrong,” Rachel said, “From hospital visits, to lack of therapies, to school placements.”

On the question of how long she and other parents are prepared to protest for, Rachel said: “We’re going to keep going until we get what our children deserve and what is their right.

“Our kids don’t have a voice so we have to be their voice. Our kids are like a forgotten generation. We, as parents, are burnt out. The HSE, the TDs need to take action.

“The TDs really don’t understand the impact on families. We are carers for life now and we are continuously fighting for basic needs and rights,” the mother and carer said.

Enable Ireland have made progress in addressing long running vacancy issues for Cavan CDNT. Previously we have reported that the vacancy rate stood at 58%.

As of the latest figures (August 1) Cavan CDNT has 71% of posts filled, indicating that the vacancy rate has reduced to 29%.

In previous Anglo-Celt reports Enable Ireland have explained the background to the delays.

“There are over 640 children eligible for services with the Cavan Children’s Disability Network Team (CDNT). Our clinicians work on a priority basis where the children with the most urgent/significant risks are seen as a priority within the resources available.

“There is currently a national shortage in healthcare staff and as with all teams and agencies this is making it harder for us to fill vacancies on our teams, including our team in Cavan. We continue to work with HSE on recruitment initiatives to attract and retain staff to work on our teams.

“Unfortunately, the current shortage of staff in some posts means services fall short of what families expect and what staff want to deliver and, as a result, children need to be waitlisted for both assessment and intervention.”