Indifference of State toward children with special needs an affront to ‘Republic’

Even for those who promote the balance sheet of an economy over the values of society, the whole thing is little short of stupid, writes Michael Clifford

Indifference of State toward children with special needs an affront to ‘Republic’

EVERY now and again stories find their way into the media which give pause for thought. Last week, much of the airwaves were dominated by talk of pressure for pay rises in the public sector, and the dawning of Trumpland in the USA.

Other weeks we hear of the “hated USC”, as if a progressive method of taxation is the source of primal anger. And then there is the recurrent sore of water charges, elevated in some quarters into a barometer for human rights.

Meanwhile, far from the glare of the public square, beyond the circle of vested interests, the true values of the alleged Republic can be glimpsed.

Last week it was revealed that some psychologists and psychiatrists “mislabel” children with emotional and behavioural conditions. The head of the National Council for Special Education (NCSE) said that a practice known as “diagnosis for dollars” in the USA was now happening here.

The chief executive of NCSE Teresa Griffin said that she had been told by professionals that they had purposely misdiagnosed children in primary schools.

“We think it’s really bad that a child would be labelled simply to get an education resource,” she said, according to a report in the Irish Independent.

On the face of it, this looks like a scandal. Health professionals “labelling” children for a few dollars more. A scandal it certainly is, but not the one that it first appears to be. The reality is that these head doctors are subverting their professional ethics in sympathy with the client and their parents. For in this Republic, a label is required before a child can access vital education or supports that may, at the very least, ensure that their quality of life, such as it is, does not deteriorate.

To access educational supports a child must be diagnosed as suffering from a behavioural or emotional condition such as ADHD (attention deficit hyperactivity disorder) or related conditions. The same applies for accessing more concentrated services in areas like autism.

Psychological services are stretched like so many other public services. So a parent has a choice. They can wait to get an assessment — which in some cases takes up to two years — while their child’s condition inevitably deteriorates. Then, when they are finally assessed, services can be accessed. If they are available.

Alternatively, the parent who can afford it gets their child assessed outside the system. Along comes your friendly psychiatrist or psychologist who rather than concentrating on the exact details of determining a psychological condition, instead gives far more weight to the fact that the child needs supports. Hence the sympathetic assessment is effectively a gateway to the possibility of vital services.

For the majority of parents who simply can’t afford to go private, it’s tough luck. In some instances they are condemned to observing the deterioration of their child’s condition while waiting over endless months, and in some cases years, for word that an assessment is on the way. These lives do not feature much in public discourse in a society where those who shout loudest wield the greatest power.

Some might call this an Irish solution to an Irish problem. It would be more accurate to call it what it is — a savage infliction on families who are already dealing with the emotional and financial impact of trying to do the best for a loved one who has special needs.

With conditions like autism, early intervention is vital. It can make the difference between a child growing into an adult with the capacity to function at a high level within the constraints of their condition, or a child being thrust further into a lonely world of darkness. Yet the lack of urgency by the State to identify and address the condition at the earliest stage speaks volumes for the values that obtain in our society today.

Two cases highlighted on RTÉ Radio’s Liveline programme this week illustrated the point. Anne spoke of attempting to get a diagnosis for her child who is on the autistic spectrum. After waiting in vain for six months, she accessed private professionals because she can afford it.

She was told that her child would be put on a waiting list for services, but when she rang some months later, she was told the child wasn’t on a waiting list because there was nobody to put the child on a waiting list. A year later there was still nobody to put him on a waiting list.

Nearly two years after seeking a diagnosis, the child is still not getting services from the HSE for speech, occupational therapy and physiotherapy, which had been recommended by the assessment. There is no immediate prospect of the child accessing these services. Anne told the programme that she can afford to access private support. She was phoning from her car, where she said she was waiting outside a premises where her child was getting speech therapy at a cost of €90 a session. Fiona’s son has a psychological condition. “He got his assessment within six months but two and a half years later he is on a list for psychological services,” Fiona told Joe Duffy.

Twelve years ago, when the country was awash with money, the Oireachtas passed a law catering for the education needs of children with a disability. This gave children with special needs a legal right to an education plan. Twelve years later it hasn’t been implemented.

The year after that law was passed, another provided more rights. The Disability Act 2005 entitles a child to assessment for a disability, but once that assessment is complete there is no corresponding right to services. It’s as if law makers busily constructed a legal framework to make it look as if something was being done. In reality it looks like a ruse to protect the State from any financial liability to its most vulnerable citizens when such monies would be better spent wooing votes from vested interests.

Aside from the lack of basic human values that attaches to such a callous regime, there is a financial penalty. When early intervention is ignored, the cost of long-term care increases. So even for those who promote the balance sheet of an economy over the values of society, the whole thing is little short of stupid.

Anybody who knows parents of a child with one of these psychological conditions are aware of the toll that is extracted for their love. Deep resources of energy are required, endless patience needed and routine sacrifices made. Thereafter, they are thrust into the endless battle to get for their child that which any self-respecting society would willingly provide. Except they live in a society where these values are in short supply. The loudest determine where resources are deployed, the body politic focuses on where best to maximise appeal.

For those outside the centres of power, the complicated hand dealt to them by fate means they are condemned to lead lives of quiet desperation at the hands of an indifferent State.

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Wednesday, February 24, 2021

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