Eight-year-old Isaac, who has a rare neuromuscular disorder, spent two years working hard during various therapy sessions to manage to stand up on his own after a fall.
But over the past months there was a notable regression and he can no longer do this, after most therapy services stopped or were greatly reduced – first due to the novel coronavirus and now because of union directives.
“What took him, and other children in similar situations, years to achieve has been undone in a few months. He is going to have to work harder to regain what has been lost,” says his mother Karen Buttigieg, a committee member within the National Parents Society of Persons with Disability.
Karen voiced the concerns that many parents of children with disabilities have been talking about over the past weeks: they cannot understand why union directives – that essentially stop valuable therapy for these children – were issued at such a sensitive time.
Las week the UHM – Voice of the Workers issued industrial directives for a section of health workers to only provide emergency services owing to a pay dispute with the health authorities.
The directives apply to audiologists, occupational therapists, dental hygienists, dental technologists, biomedical scientists, physiotherapists, speech-language pathologists, radiographers and podiatrists.
The union complained their collective agreement expired in December 2017 and the industrial dispute was registered in January, but it was suspended in March due to COVID-19.
“We understand that workers must fight for their rights... but they chose the worst possible time. Anyone who works in the disability sector knows how hard it has been hit. It feels like the vulnerable are being used to put pressure on. In such a situation, there should be a human aspect.
“A lapse of five months in therapy could mean a regression of years,” she says adding that, despite the directives, physiotherapy services at the Children’s Development and Assessment Unit have not stopped.
Karen, who is also a biology lecturer within the University of Malta Junior College and the Faculty of Education, explains that over these weeks many parents voiced various concerns through the Facebook support group Support for Parents for Children with Different Abilities, which is a closed group of over 500 members.
It takes a village to raise a child... in the case of children with disabilities, we’re talking about a really big village that also includes various therapists
She explains that for these children, three forms of therapy are essential: physiotherapy, occupational therapy and speech and language therapy.
Early intervention is also crucial for children that have not yet started school.
“When my son was born, he was in hospital for one year and seven months. And even then, in hospital, he had frequent therapy sessions,” Karen says.
The government offers these forms of therapy for free.
However, these free services are inconsistent, and the frequency is not always sufficient, with appointments for some services given once a month when children would need them at least once a week to see a steady progress, she says.
So, parents end up taking their children to private therapy racking up bills of hundreds of euros a month – especially since the sector is not regulated and prices are always increasing, she says.
“This is unjust because not all families are in a position to fork out all of that money, increasing the disadvantage that some children end up facing, or pushing families to resort to charity to pay for therapy,” she says.
“Given that the government services leave a lot to be desired, parents have long been saying that rather than offering free services it might be a better idea to supply parents with vouchers for private therapy,” she says.
The Commission for the Rights of Persons with Disability is currently carrying out research into the efficiency of the free services offered.
With the situation far from ideal, coronavirus was a big blow to these children.
Initially, the government’s therapy services were stopped completely and, eventually, some parents were contacted for online sessions while others never were.
When it came to private sessions, many shifted to virtual ones and in many cases resumed normally with precautions once restrictions were lifted. Many parents started trying to provide the therapy themselves at home, which is not the same as that provided by a professional.
When the number of virus cases began to drop in June, parents started to see the light again as slowly some of these ‘free’ sessions were held. And now, apart from the increasing COVID-19 infections, there are the union directives.
“Now that therapy services have slowly started they come up with a directive that stops even that little bit that was being given,” Karen remarks.
“It’s a slap in the face. Some children have been without a particular therapy since March.
“For some, it’s occupational therapy... for others it’s speech or physiotherapy. There’s an expression... ‘It takes a village to raise a child’. In the case of children with disabilities, we’re talking about a really big village that also includes various therapists,” she adds.
“During COVID-19 restrictions, many parents found themselves alone in this village, but everything has to keep on going, and so they took it upon themselves to try to mitigate the situation in one way or another.”
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