Change is coming in the world of special education. For the children who don’t tick the right boxes on administrative application forms for educational supports, and their families, it cannot come soon enough.

Imagine a more tailored system of additional teaching support, based on the educational needs of your child and not whether they have any particular diagnosis. That is the basis of a model that is being piloted across 48 schools this year.

The Special Needs Parents Association had hoped the new model would be ready to roll out fully this month. It would have dealt with the many inequities that have been highlighted with politicians and policymakers on behalf of parents by the organisations involved in advocacy such as our own, Inclusion Ireland and the Office of the Ombudsman for Children. There isn't a TD who hasn't met a family fighting to get the level of supports they feel their child requires in school. Many of the public have heard about special needs assistants (SNAs), who look after children's care needs, but have little understanding of how the system of additional teaching support works, and how a "diagnosis lottery" determines who and what level of teaching support a child gets.

When it comes to diagnosis, no two children are the same, whether we are talking about autism, Down syndrome, cerebral palsy or a learning difficulty such as dyslexia. Apart from some shared characteristics among these conditions, each child has a different level of learning needs depending on the severity of their condition. Other factors may also have an impact on their learning abilities. Then there are the children with no diagnosis and who may never get a formal diagnosis but have very evident disabilities. They don’t fit neatly into a tick box.

The imperative to get a label

When dealing with a system of educational supports mainly awarded on the basis of diagnosis, the imperative to get your child labelled before they start formal education puts a burden on parents that they should not have to bear. More and more we hear of parents paying for private assessments and reports to meet the spring application deadlines for educational supports, and getting a diagnosis that doesn’t really tell much about the child or the child’s needs.

One would assume parents who can afford to pay privately for reports just go ahead and do so, and parents who cannot don’t, but that is not the case. We see hard-pressed parents scrimp and save every cent to pay the several hundred euro an assessment can cost, or get short-term loans or support from organisations such as Vincent de Paul. Other parents may not need to put their hands in their pockets if they live in the right area, not necessarily affluent areas but simply ones that are more likely to have assessments.

There is a geographical postcode lottery coupled with a diagnosis one. Live in the right area and have a child with a diagnosis that fits into a disability service criteria, and you are less likely to have to pay for an assessment and diagnosis. Yet another inequality unveiled. However, children’s disability services are also slowly migrating towards a needs-based system, in the same way as education.

But even where children are already linked with therapy services, either HSE-led or HSE-funded, the waiting lists for assessments and interventions are shamefully long. Therapists are pressured into spending their time on assessments and reports, purely for the annual application rounds in the education sector. This isn’t the best use of their time; therapy interventions would benefit the child and family more. Some children seem locked in a cycle of assessments without ever receiving any actual therapy, because the gap between seeing the child can span several months or even years, and the child has changed over that period of time, making the previous assessment redundant.

This leaves teachers no more informed about the child than before, and with less access to therapeutic supports, which are often essential and enhance teaching.

The proposed new model may break the cycle of demand for diagnosis and assessments for the application process, thus easing the pressure on the disability sector so it can focus on delivering actual interventions, taking the burden off parents to label their child in order to access supports. But the other knock-on effects in schools may not be as popular, unless teachers are funded for further training and are supported collaboratively by therapists. This is key for many children, especially those with complex needs, to enhance the educational journey.

Many have yet to be convinced of the merits of the radical new model of allocating additional teaching supports, but one thorny issue for all stakeholders is that yet another government is likely to come and go without fully implementing the Education of Persons with Special Educational Needs Act 2004.

In the past few years we have debated, voted on and enacted historic legislation giving rights to children and LGBT. Isn’t it about time the country got behind people with disabilities and add to the voices fighting for their rights? Waiting decades for legislation to enhance the rights of children and adults with disabilities isn’t something any of us can, or should, stand over in a progressive society.

• Lorraine Dempsey chairs both the Special Needs Parents Association and Inclusion Ireland's education committee. She has a daughter with special needs