Starting school is the first step into formal education. Progression to post primary school can be challenging. Leaving school is exciting because it is the time when you get to chose the path of learning for yourself- Your ticket is the CAO form. Your destination could be university, an institute of technology or any number of colleges. Your family and friends wish you well. You might be moving away from home. This is the stuff of normal life and regular families. So what happens if there is somebody who needs extra help or falls into the bracket that is defined as having ‘special needs’? Then the path is utterly different.
Drawing from my own experience as the mother of Diarmuid, who is a young man with an intellectual disability (ID); I am convinced that our Irish system has many positives, but also many gaps. Some people with ID have a very good service, while others may have none at all. Standardisation across the system is a difficulty. The policy is to move towards inclusive education and I believe education is inclusive when students with special needs are educated in their local school in age-appropriate classrooms alongside their non-disabled peers, with the necessary supports to enable participation while also meeting their individual needs. While I’m passionate about this view I remain concerned about what might happen to people with severe ID, hence I do not envisage the phasing out of the special school system.
There will be difficulties in implementing inclusive education across the Irish education system. At present our class sizes are too big and this means that more special needs assistants (SNAs) are needed, to avoid pupils with ID becoming isolated. To be successful inclusive education requires the relationships between all stake holders to be on the one voice. This process will not proceed without tensions.
The value of a diagnosis or a label, while we may not like it, does guarantee a certain level of service. For this reason assessments need to be done quickly. At primary level there are two choices for the child with special educational needs (SEN): to go to a special school or to go to the local national school. This is a very personal choice for parents. The parents make the choice in the best interest of their child and in consideration of their own circumstances. Many pupils need the support of a special needs assistant (SNA) in order to be able to cope in mainstream school.
We chose the option of special school for Diarmuid. There were a number of things that influenced our decision. Diarmuid had medical issues and we felt that he would be safer in a special school where his needs were understood. He had difficulty with speech so we thought he might receive better speech therapy in a special school. We’d been told that the gap between mainstream pupils and those with special needs widens as the pupils get older. From my experience as a teacher I have found this to be true. Hence, many pupils with (SEN) revert to the special school system while others struggle through the post primary system with little support. Surely this is not equitable or fair?
It is seriously challenging for people with an intellectual disability to find suitable options after leaving school. Generally there is only one avenue and that is attending a local disability service. Over the years, provision of places has been sporadic and there seems to be no plan for people with an intellectual disability after the age of eighteen. This is simply not acceptable and clients should not be pawns in disputes between the HSE and disability services throughout the country. Putting more clients into disability services that are already under pressure is not sustainable. Society has moved on from merely offering care to people with ID. They need individually tailored programmes, individual education plans (IEPs) up to school leaving age and Person-centred plans (PCPs) after that. Education is key to success, but it must be worthwhile learning, such as programmes towards independent living, personal care, the working environment and defining their own futures.
The challenge for administrators in Ireland will be to get the numbers right. The various departments involved must then put funding in place to provide places for the people leaving school. All people, with or without disabilities, are entitled to an education. There are many stakeholders involved: teachers, teacher training colleges, the National Council for Special Education, the wider Department of Education and Skills, the voluntary disability agencies, the curriculum development agencies—along with parents and pupils. It is difficult to get all agencies cooperating when resources are tight. Nevertheless we must educate people with SEN so that they can live better lives, reach their potential and contribute to society.
Being educated in the same school as one’s siblings without having to travel long distances and going on to college seem to be straightforward ambitions, yet they are still not a reality for everyone. As a parent and teacher I find it hard to have the required patience, but as someone who is sometimes involved in shaping policy I know that things are changing.
It is important that the Disability Strategy and Education for Persons with Special Educational Needs Act (EPSEN 2004) are put in place to allow movement towards fully inclusive schools, to enable all pupils to have an opportunity to learn together. I look forward to a time when there is a place on the CAO form for disability services. The vehicle for accreditation is there through FETAC. We just need to put the programmes in place.
There are good people in our system. I encounter them every day. People with SEN can and will be better served in the future, but it requires all the stakeholders to work together.
Education is a human right, which puts it as a high priority in the eyes of Irish society, and if I am honest I am very lucky that achieving in this sphere is held in such high regard because it is where I excelled and got an opportunity to show my true colours. I have a physical disability, cerebral palsy, which very obviously impacts on my mobility. When people meet me first, before I open my mouth, they often assume that there is no brain operating behind the scene, and it is very frustrating. My greatest weapon in combating this misconception is my education.
I attended mainstream education all the way up. I was lucky, I just needed the playing field to be levelled a little bit. I availed of extra time for exams and a scribe. At third level I also had support with transport and educational assistants. All these little things culminated in me achieving a degree in applied psychology from UCC and an MA in journalism from NUI Galway. I am extremely proud of the letters I can now put after my name. They affirm my ability and diminish my disability. With every step in education I take, my disability has less and less of an impact because my achievements cannot be disputed. It is an incredible feeling and I want everyone to experience it.
For people with an intellectual disability, it is not quite as straightforward to achieve effective inclusion. Due to the fact that people with an intellectual disability rely on service providers to avail of education and because the emphasis is on educating people to the age of 18, many people do not and cannot benefit from further education. Further education is the part that allows us to truly flourish and to define our individuality and it should be available in some shape or form to all individuals in Ireland, without exception.
Some people may be reading this and thinking it is all a pipedream, but if we reach for the moon we might land on the stars. Lifelong learning is a focus in all of our further education institutions, so it should also be tailored and offered to people with special needs of all kinds. I am not saying that people with an intellectual disability should fit into the conventional system we have. I feel the system should be flexible to fit all kinds of abilities.
My brother Diarmuid has Down Syndrome and he wants nothing more than to go to college. I want the very same for him, and we as a family won’t rest until he gets it. He is an achiever and wants to be the same as me and my other brothers Philip and Colm. He should be afforded that opportunity. Unfortunately, in Cork where we live there are not enough doors to knock on yet!
A concrete example of real inclusion working on the ground is the Going to College Project in NUI Galway. The pilot project which began in 2011 is enabling eight students with intellectual disabilities to study at the university in the undergraduate programme of their choice. Students are registered full-time students and are fully included in undergraduate lectures, tutorials, labs and group work, with opportunities to volunteer and do a work placement. I have met all eight students and they are all thriving to their potential. It’s a great example of a university/community partnership, all working together to achieve social change. There is a great buzz about this project and it will undoubtedly go from strength to strength into the future.
Like most further education initiatives, the Going to College Project is dependent on funding, and due to the tough economic climate, it gets harder and harder to secure the money, but people have great ingenuity and a sense of innovation and most of the time where there is a will, there is a way. It saddens me when funding is a thing that holds real progress back!
I am so proud of NUI Galway for all the hard work they have put into this pioneering project. There are other projects and programmes around the country, but they group people with intellectual disabilities rather than integrating them with the wider student body and tailoring programmes and support to individual needs. Real inclusion means everyone together. I am aware that some people need more support than others; in terms of how inclusion works it is not a one-size-fits-all outfit. It takes hard work, thought, reflection and perseverance by so many people, not least the learners themselves.
Achievement in my eyes is a relative concept. The most important component is potential. If an individual is reaching their potential, that is all anyone can ask for, but we must continue to ensure that everyone has the opportunity to explore their potential and find an outlet to achieve it!
I will remain steadfast in my pipedream, only because I know in my heart that it will become reality. When I was in school, there was nobody in my classes with an intellectual disability. In schools around the country there is real inclusion happening and now my brother studies with a student with an intellectual disability in his degree in Arts and Human Rights in NUI Galway.
I know particularly for parents and siblings of those with intellectual disabilities it can be hard to keep the faith if the person you love does not get a place and seems to be left behind, but I promise with all my heart there are many of us working to ensure that this will change. We are making it happen one step at a time, we have come a long way and have further to go, so please hang in there with us!