Children with needs are not State’s enemies

Autism campaigner Adam Harris responds to RTÉ Investigates revelations regarding intelligence dossiers being kept by the State on autistic children engaged in litigation.

THERE is very little you can take for granted in life. When a child is born, their parents really have no idea where life will take them. They want them to have the best of opportunities, to not have to suffer or be discriminated against, to be the best version of themselves and to find happiness. The founding documents of our Republic guarantee that the State will do all that it can to bring this about, ‘cherishing all the children of the nation equally’. Yet for autistic children and their families, this promise has always rung hollow and been consistently breached, almost universally, and almost from the moment of birth. While the recent revelations that the Department of Health and Education was maintaining dossiers on autistic children who were forced to sue the State for access to the most basic educational and therapeutic supports, sickened many in the autism community, for many it was no real surprise.

You see, while most parents might not know what lies ahead for their child, there are usually some basic things they can take for granted.

If they require medical or clinical attention, they will get it. When they reach a certain age, they will go to school and be able to learn there. If they play by the rules, they will be given every shot at making something of their life.

For the parents of autistic children, none of this can be taken for granted. For many years, the State simply refused to recognise it had any obligation to provide the most basic of supports to children on the autism spectrum. Its position appeared to be that their very diagnosis cancelled their childhood and the rights that go with it.

Families were dragged to the highest courts by a State actively opposed to providing meaningful supports. Today, while legislation promises timely assessment and associated supports, the State is generally content to ignore the law, never implementing policy, or actively fighting families where it is not convenient for Government or senior civil servants to deliver what are not charitable supports, but basic, fundamental rights.

It is sickening to learn that the State, down through the years, not only didn’t provide the supports children deserved while fighting families seeking what they were entitled to, but appears to have plotted against them.

The vital trust between patient and doctor and the constitutional right to family life seems to have been collateral damage in the fight to ensure children weren’t given the support owed to them.

It goes without saying that we need answers. First and foremost, the families whose cases are involved must be immediately notified. They must be given real support to help process what will often be very upsetting, personal and potentially deeply inaccurate depictions of their family over many years. This means access to officials who can answer their questions but it also means genuine professional support to help come to terms with this news.

We need a concrete commitment that no family will have to take legal action to access information or to get appropriately compensated for any damage done.

What is most disturbing about this episode is the response of the departments involved. We have not been told this is an old, historic practice that will never happen again. Rather, we have been told it is simply how litigation works.

It would seem there is a view that there is nothing to say sorry for. Until the 11th hour, the energy of officials was focused on blocking the public from learning about what took place, rather than addressing the issues and supporting families who were about to experience deep trauma from what they would see on their screens.

IT is safe to say the Department of Health, Education or the HSE cannot be responsible for reviewing or investigating this matter. A full, impartial and transparent investigation must take place. We must know, in a timely way, what happened. Is this still going on and is there anyone else affected? Critically, we need to know how we can ensure it stops and never, ever happens again.

The law alone will not fix this though. It has been simply awful to see the poor treatment of autistic children and their families reduced to the quoting of statutes, policies and legal opinions.

There are plenty of things lawful that are still deeply immoral and fall far short of what we expect from the officials charged with supporting children with additional needs.

What we really need to see here is a culture change. A new approach from departments and officials that is about working with families to provide timely support and follow the very laws and Government policies that are meant to provide for that. It means treating families with dignity and seeing them as experts by experience. Partners, not the enemy.

A deep reset is required to make this the norm. We are great at being horrified in hindsight at the treatment of children but we need to use this awful reality to bring about lasting change.

That means real investment in disability services that are cracking at the seams and are often non-existent. It means true accountability on the provision, quality and delivery of support services and taking action before things reach crisis point. It means departments becoming less defensive and investing time in providing services, not blocking them.

Autistic people make up only 1%2% of the Irish population. Our community cannot change things alone. Most people are lucky enough to never have to wait over 40 months for early intervention services that their child desperately needs to be able to communicate or manage in day-to-day life, or worry about their child not having a school place, or what will happen to their son or daughter when they are no longer alive. If you are lucky enough to not have these experiences we need your support to demand better treatment for those who are not so privileged.