Parents of children with a disability have called on the government to provide effective and continuous therapy by funding services offered by NGOs, like Inspire.

The parents of five children who use Inspire’s services said therapeutic services offered by the government’s Child Development and Assessment Unit (CDAU) were inadequate, so they had no choice but to resort to Inspire.

However, Inspire is being forced to cut down some of its precious services – including speech and occupational therapy and physiotherapy – because of a lack of funds.

The parents, who are members of the Inspire Parents’ Forum, called on the government to take action to ensure children like theirs have access to efficient therapy.

Given the state’s limited resources and to avoid duplication of services, they suggested the government should restore funding to Inspire and work in partnership with the non-profit organisation, or other NGOs.

“We sincerely hope you will consider our plight... We suggest that you, in fact, engage Inspire to provide specialist programmes in partnership with the CDAU,” the parents wrote in an open letter to Health Minister Joe Cassar.

Speaking to The Sunday Times, they said they were disappointed as they had not received an acknowledgement to their letter.

The CDAU, based at St Luke’s Hospital, recently came under fire when a government-appointed task force described its waiting lists as “unacceptable” and “excessive”. Children sometimes had to wait over a year for their first appointments.

The task force called for the CDAU to focus on improving what it did best – initial assessment of all children. But follow-up and ongoing therapy should be “devolved” to third parties like Inspire and Equal Partners.

Inspire CEO Nathan Farrugia explained that the government helped the NGO with funding for educational programmes. But when the Eden Foundation and Razzett Tal-Ħbiberija merged, funding for therapeutic services ceased.

Inspire has to cover the therapeutic costs – about €300,000 a year – through fundraising and parent contributions.

Mr Farrugia stressed that Inspire was a non-profit organisation that had to cover the costs and pay therapists to ensure it did not operate at a deficit that could hinder its operation in future.

Since certain therapies could not be thinned, Inspire would have no choice but to stop some altogether to focus funds on delivering other therapies effectively.

“This is not a matter of turf... Let’s keep the child and family in the centre and get the stakeholders to see how they can provide the best services in a cost-effective way,” Mr Farrugia said.

One of the parents, Alex Vella Brincat, spoke about his six-month old son, who has Down syndrome.

He only got the first physiotherapy appointment with the CDAU three weeks ago after five scheduled appointments were cancelled.

“Early intervention is important so we started right away, when he was one month old, with Inspire. If I had to depend on the CDAU, my child would have been at a further disadvantage,” he said.

Stefania Briffa, who has an autistic daughter, said that the times when therapy was offered at the CDAU were not ideal for working parents. Besides, the services there stopped when the child turned six.

The parents said they remained on the CDAU’s books as they feared their child would otherwise not benefit from a learning support assistant once school started.

While parents praised the therapists at the CDAU, they said resources were overstretched and this meant children could not be offered timely, continuous and effective therapy.

“We are asking the CDAU to stick to what it knows – assessment – and fund therapies through NGOs. We have experience that Inspire works... It will be less costly for the government and better for the child. It’s a win-win situation,” parent Aldo Abela said.

He recounted how his six-year-old autistic son had made huge progress through the early intervention offered there.

“Three years ago, before he started at Inspire, we had to leave the family Christmas gathering as he could not stand having people around him. This year, he was up until midnight enjoying himself and distributing gifts. The change was enormous.”

Questions sent to the health ministry remained unanswered.

However, reacting to the task force report, Dr Cassar said he was looking into “various options” to improve the situation at the CDAU.

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