Why parents of children with autism continue to play a waiting game
A recent Department of Health Report confirmed that there has been a 67 per cent increase in the number of school age children in Northern Ireland diagnosed as having autism across all trust areas. The report went on to highlight the fact that boys are five times more likely to have a diagnosis of autism. There has also been an increase in the rate of girls with this condition. The news of this increase does not come as a shock to professionals working in this area in both care and education. In October 2010, figures also released from the Department of Health showed that half the children waiting for a diagnosis of autism had been waiting longer than a thirteen week target time set by the Government.
What is an autistic spectrum disorder?
Autistic spectrum disorders (ASD) cover a broad range of conditions. People on the spectrum can present in very different ways, as ASD can vary greatly between individuals. Some may exhibit only mild or moderate issues while others may have profound difficulties. Furthermore, there are within children with a diagnosis on the autistic spectrum greatly varying levels of intelligence. Depending on the specific condition they have and how it affects them, some have very high IQs while others can have severe learning difficulties. There are, though, a number of key factors that are usually present to differing degrees in children and young people with an ASD. These include:
- social difficulties
- slower or different development of speech
- poor imagination
- unusual behaviours.
Most children with ASD have sensory difficulties, which means they are either over or under sensitive to sound, sight, taste, smell and touch. These common autistic traits tend to make it more difficult for children to process information in the same way as those without autism.
Early identification is key
Professionals and researchers agree that early intervention and diagnosis is essential to improve the developmental and educational outcomes of the child with an ASD.
However, in my experience, there has been at best piecemeal provision of diagnosis services across Northern Ireland. In many cases, parents have to make a number of visits to a variety of professionals before a diagnosis can be achieved and parents often have had to resort to private funding in order to obtain a diagnosis. One key factor here is the poor link between various education and library boards and the relevant health and social services trust. The shortcomings identified include:
- a lack of resources, including trained, designated ASD staff to support families of children with ASD
- ad hoc arrangements to deliver support
- a lack of educational input from some professional teams who are charged with diagnosis
- a flawed referral system
- a lack of training of health staff – particularly health visitors
- a lack of intervention services to refer children to following diagnosis
- insufficient training, specifically for clinical psychologists and speech and language therapists.
The picture is not all bleak, though. A number of trusts in Northern Ireland have established multi-disciplinary services for ASD and can therefore make good progress in early identification and support.
If your child has been formally diagnosed on the autistic spectrum, it is important to know that it is the ultimate responsibility of education and library boards to make arrangements to meet the needs of your child. However, there are parents who have not received a formal diagnosis and who are acutely aware that their child is demonstrating difficulties in using speech and understanding language. They may be manifesting difficulties developing basic study skills, for example in literacy or numeracy. The child may also be considered disruptive in class or refuse to join in group activities. It is sometimes the observations of the parents which are most important to make sure that the child’s SEN are identified as early and accurately as possible.
What rights do children with SEN have?
Children with SEN are by law entitled to additional support. These rights are enshrined in a Code of Practice on the identification and assessment of SEN under the Education (Northern Ireland) Order 1996. One of the fundamental principals of the Code is that the needs of all pupils who may experience learning difficulties during their school careers must be addressed. These children require the greatest possible access to a broad and balanced education, including the Northern Ireland Curriculum. Where those needs cannot be met in mainstream school, the boards must produce clear and thorough statements setting out the child’s educational and non educational needs, the objectives to be secured, the provision to be made and arrangements for monitoring and review. This involves close co-operation between all professional agencies and a multi-disciplinary approach.
There is a five stage approach in identification, assessment and delivery of provision. The first three stages are based in the child’s school and involve the school making use of external specialists. The School does this with the assistance of a SENCO, who takes lead responsibility for collecting and recording information abut the child. Stages four and five are where the Board considers the need for a statutory assessment, if appropriate, and a multi-disciplinary assessment. If appropriate, the statement is made which arranges, monitors and reviews the education provision for that child.
Statements are subject to annual review as the child’s needs evolve and change, particularly where support has been provided at the earliest possible stage.
The appeals process
Some parents of children with autism find themselves fighting a seemingly constant battle against education professionals to obtain even the most minimum levels of intervention for their child. I have encountered considerable delays between the various stages of diagnosis and support and also a refusal to recognise the parameters of responsibility between the school and the education and library board.
Where either the school or the board are not complying with and implementing the Code of Practice for a particular child, an appeal can be made to the SEN Tribunal.
There are, though, cases where appeals do not provide the appropriate remedy for a particular breach of the Code of Practice by a school or board. These cases may be appropriate for judicial review proceedings. This type of court action allows the parent to challenge the decision or action of the board or school. The court will examine whether the board or school has observed all relevant legal rules, standards and requirements and acted within the limit of its powers. It should not be considered as an appeal and can only be used where there is no adequate alternative way to resolve the issues, such as an appeal to SEN Tribunal. A decision can be challenged if the board or school have acted illegally, in a procedurally unfair manner, irrationally or contrary to the child’s legitimate expectation as protected by law.
The overriding consideration is that a child with autism has the same right to be educated as a child without autism.
What will the courts do?
If the court finds that the board has acted either unlawfully or without taking into account relevant considerations in their decision making processes, the court may make one of the following orders. It may:
- strike down the unlawful decision made by the board or school, which must then retake the decision in a lawful manner
- make an order requiring the board or school to carry out an action it has a duty to perform
- declare what the law is and declare the respective rights of the parties without making any further order.
In some cases, an injunction can be issued preventing the board or school from acting in a certain way, or compelling it to take a particular course of action.
Obviously, before initiating this action it is important to engage in correspondence with the body in question to try to resolve the problem informally first and then resort to other methods only if that does not work. There is also a pre-action protocol which must be adhered to. Where all other courses of action have been exhausted and a judicial review appears to be the only remedy left, a parent can apply for a legal aid certificate in the name of the child and based on the child’s means to secure public funding for the application. A certificate is not always granted and, in many cases, counsel’s opinion should be sought to support the application. Alternatively, an appeal can be brought if the decision of the Northern Ireland Legal Services Commission is to refuse to grant a legal aid certificate.
Judges can adopt a pragmatic approach which includes adjourning an application for either leave or judicial review if leave has been granted, so that steps can be taken by the school or the education and library board to remedy the breach or to at least work in tandem with the parent to achieve a settlement which best meets the child’s SEN.
This is a growing area of case law and can include challenges regarding breaches of the Code of Practice or failure to consider the placing of a child in a non mainstream school where the child’s statement does not allow for that provision.
What steps can parents take?
There are a number of organisations dedicated to improving the overall care, wellbeing and development of children with autism in Northern Ireland. I would urge all parents to access their websites and to speak with professionals to establish what support is out there for their child and how it can be accessed.
It is heartening to note that the Education Minister John O’Dowd has approved the establishment of autistic spectrum disorder units in a number of board areas. These units benefit children with a diagnosis of autism who cannot cope in a mainstream classroom situation on a full-time basis. The units are attached to mainstream schools, to enable the child with autism to access small group teaching and periods of individualised support, whilst remaining integrated with their peers in mainstream education. It has obvious benefits for the children, both educationally and socially. There is an ongoing consultation process in relation to other board areas and I would urge all parents to become involved in these processes and educate themselves as to what choices their child has and how they can be individually supported within their respective schools.
The Government is currently failing a significant number of children with autism both at primary and post primary level in Northern Ireland. The challenge is to ensure that those charged with the responsibility of educating our children continue to be educated themselves about the needs of some of the most vulnerable people in our society.
Anne Marie Kelly is head of the Family and Matrimonial Law Department at MKB Law in Belfast: