Ms Angela Locke-Reilly:

When my son was born we lived in Mayo, which was, at the time, was one of the pilot counties for the PDS model. They did everything the way it should be done. It was amazing and brilliant. We had a key worker who pulled in all our different therapy programmes and worked with the families to build it into their life. For example, for us, a physiotherapy exercise might be playing tug-of-war in the bath instead of being an intensive physiotherapy session. It felt like it was doable and organic. We were doing what every other parent in the country was doing whether his or her kid was disabled or not, and that was fantastic.

We even had a liaison nurse who connected our disability support team with our medical support team, including paediatricians and consultants. All the different systems we were in were connected and communicated with one another so that everything we did was built into our life. It was just so efficient and everything ran so smoothly. We never had a problem getting access to therapies.

Other services that were offered were camps or activities that were in place of physiotherapy. I keep calling them physio-output because people usually know most about that. If parents did not have access to a physiotherapist for a few months, they might have access to some other kind of physical activity with their child that they could do once a month and then continue that at home. Everything worked so well.

When my son was three we moved to a different country where things were done in the older, more medical, system and they just were not good. We had to go into the centre where I was pushed off to the side. I was not involved in the care at all. I was not seen as part of the team. That is one of the strengths of the PDS system - the family is seen as part of the team. Everyone is working together. The family works with the different support teams. All the support teams work together, be it on education, health or medical. That integrated system was so effective.

With regard to education, a huge problem, and this is something on which I made a video for our conference, is the difference between integration and inclusion. Integration is often pitched as inclusion and people confuse the two and that is what scares many families. They think we want an integrated system where a special education system is crowbarred into the mainstream system, as we have it now, and that is not what it is. The pathway to inclusion is the most important thing to remember and that it is going to be incremental. Of course, my child cannot be put into a mainstream setting at the moment because they would not be able to support him. That would not be good for him or the other students. It is that change, that journey and that pathway from the system we have now and it is going to take time. It is not going to happen overnight. It is important to make sure families know it is not integration, but that it is inclusion and it will take time.