The Dyspraxia Association represents approximately 200 members countrywide and is in contact with many more parents, adults and children with dyspraxia, DCD, as well as teachers and professionals. The association is often the first port of call for information when a diagnosis has been given or is being sought. We are also members of the Disability Federation of Ireland and, having consulted with our colleagues prior to this, we believe our views are fully reflected in its observations and concerns in the detail of the Bill in its present form. However, we would like to focus on the specific concerns of the Dyspraxia Association, the DCD group we represent, many of which may coincide with those of fellow organisations in the special needs area.
As members may not be familiar with the terms dyspraxia or DCD, I will give them a brief description of the disorder. Dyspraxia comes from the word "praxis" meaning doing and, simply, it could be called a disorder of doing but it is actually much more complex. The DCD part of the description stands for developmental co-ordination disorder - it is the preferred term internationally providing more a descriptive title and we currently use both. It is basically a difficulty of thinking out, planning and carrying out sensory motor tasks. It is associated with poor physical co-ordination in gross and fine motor skills. Other difficulties include delayed acquisition of speech, social and communications problems. It is now recognised as a specific learning difficulty and is part of a spectrum, which may be more familiar to members, that would include ADD, ADHD, Asperger's syndrome and dyslexia which often overlap. Some children would be described as being on the autistic spectrum.
The group we represent would generally have dyspraxia as their primary area of difficulty. They are usually of average or above average intelligence. It affects three to four times as many males as females. There is no published research on its incidence in Ireland, but in the UK it is documented in the region of 5% to 7%. Basically, it has a specific set of indicators and crosses over with other disorders. It is not new but it is not as well known as some of the others which may be more familiar to members. It often goes undiagnosed or misdiagnosed and unsupported.
Our primary concern, and one of the main reasons we are availing of this opportunity to address the committee, is to ensure that dyspraxia, DCD, is recognised as a disorder, a dysfunction, a learning difficulty or whatever label is required to obtain such recognition within the legislation. As an organisation representing parents of children with special education needs, we, too, would be most concerned at the narrow definition of the term "disability" as set out in the Bill. However, we are working on the premise that our children will be included in any forthcoming legislation. We need to have dyspraxia recognised as comprising both physical and neurological elements and our experience to date would suggest that education bodies, schools, health boards, etc., can often be less than supportive when parents look for help often due to the fact they have not heard of the condition. We have regularly received calls from schools and State organisations seeking information in the absence of it being available from professional sources.
While the focus here is on education, as has been referred to by my colleagues in the other organisations, the question of the Departments of Health and Children and Education and Science working together is unavoidable and not fully addressed in the Bill. It is imperative that a definition, particularly of our difficulty, is agreed. The proposed national council for special education must, therefore, work closely with the Department of Health and Children to agree on the multi-disciplinary approach outlined in the Bill, with parents, obviously, in the first line of involvement. That is another key issue which has been raised.
Where difficulties are suspected, a child needs to be assessed quickly without obstacles on request from parents, teachers or other professionals who may have concerns about a child. Early intervention is most important if these children are to avail of and succeed in mainstream education. The previously recommended general assessment of all children - I am referring to NEPS - within the school system during infant classes would greatly assist in identifying children who are challenged as well as saving time, money and resources at a later stage. Related to this point, there are grave shortages of available personnel in specific key professions. Educational and clinical psychologists and occupational, physio, speech and language therapists are key to this as are resource teachers and classroom assistants. Presumably, this applies to many organisations as well as our own.
Access to places at third level and practical training opportunities must be reviewed. The aspirations of the Bill will not be fulfilled without addressing these issues. It is a key aim of ours that specific modules on dyspraxia DCD should be included immediately in all teacher training programmes. A point which was not included in our written submission and which is difficult to raise is the anomalous position of children with specific learning difficulties who attend private schools. This must be addressed. In Ireland there is the unique situation where for some, and admittedly it is for some, a relatively affordable private school system operates alongside the State system, particularly at second level and parents of children with special needs in private schools find it doubly difficult to find the supports they need.
A description of the specific difficulties in the classroom is set out in our submission, together with proposals to aid children in mainstream education. The purpose of this exercise was not to catalogue the litany of obstacles and lack of resources currently experienced by the children and parents with whom we are in contact. We wish the committee to be aware that there are many "outs" for organisations within the education and health systems and these will continue if the Bill proceeds in its present form without some of the amendments suggested by our organisational colleagues.
Typically, having received a confirmed diagnosis of dyspraxia there are few or no services available, depending on location. A couple of notable exceptions would include Enable Ireland, who run the Cosmo programme in the eastern region and will be making a submission to the committee, and the DCD unit in Cork, the only dedicated unit in the country for which a group in Cork is currently lobbying to keep open and supported on a permanent basis. They have successfully incorporated the multidisciplinary team approach aspired to in the Bill, although long waiting lists and resources are an issue with those organisations.
Many families around the country end up directing their own therapies, perhaps waiting years on a health board waiting list or paying privately for a sporadic service. These usually bright and inquiring children often do not receive the extra assistance in school because they are not considered to be in the lower percentile of need. That is the kind of language we hear on a regular basis. The more frightening question is how many more children are not diagnosed at all. We regard this legislation as a means of tackling such obstacles within the education system and giving these children and all children with disabilities or special needs the opportunities that should be their right.
I thank you for the opportunity to address the committee and we wish the members well in their work on this important legislation.