Dylan’s parents are learning the hard way that autistic children are not a priority

Ian and Josie Diamond from Walkinstown in Dublin with their son Dylan, 5, who has autism. He is without a tutor at the moment while his parents try to find a suitably qualified person. Picture: Moya Nolan

Ian Diamond and his wife, Josie, have failed to secure a place for their autistic son in 26 schools and are unable to find a home tutor willing to stay long-term. Every day is a gruelling battle for their rights, says Michael Clifford.

Ian and Josie Diamond, from Walkinstown, in Dublin, with their son, Dylan, 5, who has autism and is receiving no formal education. Picture: Moya Nolan

IAN Diamond gets up to fight every morning. His days are filled with the usual busyness of the average middle-aged family man, revolving around work and family.

But there is the added, and considerable, investment of time in his five-year-old son, Dylan, who is on the autism spectrum.

But beyond all that there is the constant, daily battle for the basic resources to ensure that his son gets the services to which he is legally entitled.

The law cherishes all children equally, especially in education. But the experience of Ian Diamond, his wife, Josie, and thousands of other parents in this State, is that their children’s needs are a low priority.

Ian has contacted 26 schools without success, in an attempt to get a place for his son. There is a possibility of a place in one school, but it does not meet his son’s needs, although the family are grateful for that school’s efforts.

A small minority of schools provide classes for children who are on the autism spectrum, but they have lengthening queues. Other schools provide nothing.

Ian Diamond’s search has not been confined to the locality of the family home, in Walkinstown, on the south side of Dublin city. He has been looking right across the city, and concludes that the demand for a basic education for children who are on the autism spectrum is simply not being met.

He knows that his experience is not unique, but where he differs from most parents in the same position is that he is putting his head above the parapet.

“I genuinely think that people are totally afraid to speak out, for fear of losing what small bit of hope they have, or even some small amount of resources,” he says.

“But parents are spending the whole time chasing around and it is just not good for your mental health.”

Dylan Diamond was born in May 2013. During his first two years, his parents noticed that his speech, in particular, was not coming on as they believed it should be.

“There were the regular developmental check-ups and it wasn’t looking good. I was adamant that his language development wasn’t coming along,” Ian Diamond says.

“I tried to get speech-and-language therapy from the HSE, but I was redirected to the assessment-of-needs process.”

Dylan Diamond, 5, who has autism and is receiving no formal education because of the unavailability of a suitable place for him.

The assessment of needs is conducted to check whether a child should be diagnosed with a particular condition, which, in theory, can then lead to a tailoring of services to meet the child’s needs.

It is a legal entitlement under the 2005 Disability Act. It involves a multidisciplinary team assessing the child’s needs in areas such as speech-and-language therapy, physiotherapy, occupational therapy, and psychology.

The assessment is required to access HSE services. It is also important that any assessment is conducted in as tight a timeframe as possible. Early intervention is vital in child development and particularly in the area of autism. It can be the difference between a child reaching a high level of functionality or languishing at a stage of development from which it is difficult to advance.

With this in mind, the Disability Act included a provision that any assessment must commence within three months of an application, and be completed within another three months.

Ian Diamond applied for his son’s assessment on August 28 2015. Three months later — November 25 — the HSE requested assessments from private therapists, who made up the multidisciplinary team.

These assessments were to be furnished to the HSE before January 6 2016, in order that the final report be compiled within the statutory time limit of January 25.

The individual assessments were carried out without delay.

“They were done within the timeframe,” Ian Diamond says. “But these were preliminary results, which had to be compiled in the final report. They were all pretty negative and vague references to a lack of communication skills and that he’d performed poorly.”

The final report pulls together the individual assessments and comes to a conclusion as to whether or not the child has a disability under the act. This is carried out by an assessment officer within the HSE.

That report is then passed onto a liason officer, who will give a list of the supports and services that will — in theory — be provided to the child.

The report was not completed within the statutory timeframe. Ian and Josie waited and waited for the final report. They rang and wrote, but to no avail. They filed a complaint (which was eventually upheld). Meanwhile, Dylan went further months without any intervention.

Later, in response to a complaint the Diamonds would make, the HSE admitted that: “Currently, there is no assessment officer or liaison officer in post in the Dublin south-west area. This has been the situation for some time now. As a result, a backlog has occurred.”

By the summer of 2016, the Diamonds were despairing of the lack of a reply. In July, they decided to seek a private diagnosis. Within two weeks, they had an appointment.

Following a face-to-face assessment lasting about 50 minutes, Dylan was diagnosed as being on the autism spectrum. His condition was such that a special school or dedicated autism unit was far preferable to placement in mainstream schooling.

Increasingly, parents who can afford it, and many who can’t, seek a private diagnosis. As the diagnosis is a key requirement to access services, many feel compelled to get one as quickly as possible, irrespective of the cost.

While the law places obligations on the HSE in terms of diagnosis, it does not do so in terms of the provision of services. Apart from what his parents have managed to access privately, Dylan received only a handful of therapy sessions last year.

During his first two years, Dylan’s parents noticed his speech was not coming on as it should have been.

THE next hurdle the family faced was accessing education. Current policy is to mainstream children wherever possible.

For those who would experience grave difficulty in mainstream, some schools have specialised autism spectrum disorder (ASD) classes and there are a scattering of special schools dedicated to children with special needs.

Before all that, there is the challenge of pre-school education. There are a limited number of pre-school ASD units in the country, all of which have lengthy waiting lists.

The only option open to the Diamonds was to access a private unit. These units are funded by parents through the home tuition grant awarded to those who can’t access a public unit.

The private unit was across the south side of the city, in Inchicore. The only viable means of reaching it was by a bus, part-funded by the parents. This bus was required to pick up children across the city, ensuring that a journey that might have taken Dylan around 15 minutes often took 90.

A rare piece of luck fell the family’s way for Dylan’s second pre-school year, when a place was found in a unit in a local school. The placement meant, among other things, that he was entitled to a place on a school bus.

These services for children with a disability appear to be down to luck or chance, rather than rooted in the rights of citizens.

Despite spending his pre-school year in the local school, Dylan was out of luck when it came to places in the school’s ASD class for school-age children.

The National Council for Special Education (NCSE) is the body charged with overseeing the provision of education for those with special needs.

“You’re given lists and away you go,” he says. “If you’re having trouble, they try to help you and make suggestions, but I’m not sure how much teeth that body has anyway. They can’t force schools to open units. Most of it is down to the Department (of Education).”

Another search ensued. In this one, Ian contacted a total of 26 schools across the south side of Dublin, looking for a place for his son in an ASD unit or special school.

Some of the schools don’t have a unit, irrespective of demand. Others had long waiting lists. In some instances, the schools didn’t even bother getting back to him.

At government level, there doesn’t even appear to be an acceptance that the level of services does not meet reasonable demands. In response to the parliamentary question last December, then Minister for Education, Joe McHugh, denied there was a shortage of places.

“While it is not always possible or practical that a special class-placement would be available in a child’s local school, the NCSE has informed my Department that, in general, they are satisfied that there are sufficient ASD special class-placements to meet existing demand nationally,” he replied to the written question.

The key word here is ‘nationally’. While there are undoubtedly parts of the country where needs are met, there are others — including large tracts of the capital city — where they are not. As with much to do with disability services, it’s all about luck rather than rights.

Unable to find a place for his son, Ian Diamond attempted the last resort: home tuition. One tutor who was due to start teaching Dylan pulled out within two days, as she had been accepted for a full-time job. Another search ensued. The Diamonds found another tutor, but, after three weeks, she said she had to hand in her notice, because she had got a full-time job.

Ian’s impression is that the conditions for home tutors ensure they only do it until something better comes along.

“They have to fill out timesheets and then the department rings you to confirm and they don’t appear to get paid in a timely manner. A lot of them also have a primary qualification in psychology, rather than teaching, and so have trouble being recognised by the teaching council.

“But we have no choice. We’re looking for another tutor now.”

The battle goes on: constant ringing, e-mailing, pleading, meeting, all in an attempt to access what every child in the country is nominally entitled to.

If the worse came to the worst, Ian could concede that Dylan might have to enter mainstream schooling, notwithstanding the extent of his needs.

“I know a few people who felt forced to go down that route,” he says. “And their children are finding that they get, maybe, a couple of hours of schooling a day and are then sent home, because that’s all that can be done for them.”

The other option is to pack up and try to relocate to where services do exist.

“What am I expected to do, move down to Offaly?” he asks.

“I don’t have a job there and neither does my wife. Is that what we are supposed to do?

“Are we expected to pack up and move, because services for my son are not what they are supposed to be?”

In the meantime, the battle goes on. The daily grind of trying to obtain basic services for their children is part of life for thousands of parents who are forced to rely on nothing more than luck.

Disability laws inclusive, but only in theory

The laws, as passed by the Oireachtas, are clear and unambiguous in relation to educating and assessing the needs of children with a disability. Anybody arriving in the country to check out how well children are treated would nod approvingly at their inclusivity.

Anybody scratching beneath the surface of the statutory provisions might conclude that they aren’t worth the paper they’re written on.

For while the laws are inclusive, the implementation and policing of the laws betrays a disregard for some of the most vulnerable children in the State.

Last month, the new Education (Admission to schools) Act came into force. Section 8 confers powers on the minister to direct a school to make provision for a special class for children with a disability.

Typically, an autism spectrum disorder class might have between four and six pupils.

One of the reasons for this new law is there has been a reluctance by some in education — including patron bodies and boards of management — to provide a a dedicated class for special education. As a result, there are large areas in the State’s cities, in particular, where the demand for special education is not being met.

So far, so inclusive. However, section 8 of the act has 20 subsections, nearly all of which represent a hoop through which the minister must jump before he invokes the new power. If parents, a patron body, a board of management or a teachers’ union, or other interested parties, want to stop a special class in their local school, they have ample opportunity.

The hoops also give an out for any minister who may fear taking a political hit for going against the wishes of any of the vested interests. Being inclusive is fine and dandy, as long as nobody is discommoded, would seem to be the guiding principle.

An older law that purported to commit to inclusivity is the Disability Act 2005. Section 14 makes provision for an assessment of needs for children for whom there is reason to believe they might have special needs.

The assessment must commence within 90 days of application and a report of the assessment furnished in another 90. The tight timeframe reflects the urgency given to early intervention. The experience of Ian Diamond and his family would not be unusual, in respect of the lack of urgency given to cases. Over a year after he applied for the assessment, on 28 August 2015, he had not received the report. He complained and his complaint was upheld.

The recommendation by the complaints officer was issued on August 4, 2016, and stated that “Dylan’s assessment report is prepared no later than August 18, 2016, and issued in conjunction with his service statement no later than September 18, 2016.”

The appointed deadline came and went and no report was issued. On November 7, Ian Diamond appealed the failure to implement the recommendation to the Office of the Disability Appeals.

On December 21, 2016, the Diamonds were finally furnished with a report and service statement, nearly a year after they were legally entitled to receive it. The appeals officer ruled on the matter on February 7, 2017: “As the complaint’s officer’s timeline of September 18, 2016, has been breached, I must uphold this appeal. However, as the service statement has now been issued, I do not need to comment further on this appeal case.”

Quite obviously, the law designed to protect some of the most vulnerable children in the State was broken here. There is no consequence for such a breach, no rush on anybody’s part to garner sufficient resources to ensure that the law is abided by, no real big deal about it at all.

The body politic, for its part, can claim that it did its duty by the most vulnerable and then shrug its shoulders. Nothing to do with us.

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