I’ve been doing a lot of thinking about inclusion lately. Partially it’s because I’ve been working on Michael’s NDIS workbook. Partially it’s our day-to-day experience. Sometimes inclusion works well with Michael. But if the prerequisite skills aren’t there, often it doesn’t.
To start at the beginning, what is inclusion all about? What does the research really say about it?
When I speak about inclusion here I refer to the practice otherwise known as ‘mainstreaming’, where a child with mental, physical or emotional special needs is included in a mainstream classroom. It can refer to many other things but since I am looking at research and research is mostly around school, that is what I will mostly discuss.
According to the Australian Bureau of Statistics, in 2009 there were an estimated 292,600 children with disability attending school in Australia. That is approximately 8% (one in twelve) of the student population. This breaks down to about one in ten boys and one in sixteen girls. 66% of them attended mainstream classes in mainstream schools, 24% attended special classes within a mainstream school, and the remaining 10% attended a special school. Interestingly, it breaks down very differently in different States. For example in Queensland 37% of students with a disability were in special classes compared to 13% in WA.
So how do parents make the decision? Partially it’s based on the child’s need for support. The higher the level of support necessary, the more likely they are to go to a special school or a special class.
Of the children in a special school, 85% had a profound or severe core activity limitation. Of those in special classes, it’s 64%. And of those in mainstream classes, it’s only 40%.
However availability and personal preference also plays a part. After all, 52% of all children with a disability that had a profound or severe core activity limitation were fully included in mainstream classes. So most children with high support needs were still accommodated within a mainstream classroom.
What is a profound or severe core activity limitation
This doesn’t mean they had a profound or severe level of autism (for example). It might just mean that they had a profound limitation in one area, such as communication (41%), self-care (30%), or mobility (58%). Profound (for the statistics fanatics) means approximately four standard deviations away from the mean and severe is about 3.
To make this relevant to us Michael when last tested had a profound limitation in communication (this is not just limited to not being able to talk but includes receptive language). On the other hand he had only a mild or moderate delay in all the other areas. These are things like fine motor skills, cognitive skills, and gross motor skills. His level of autism was diagnosed as moderate to severe (closer to moderate).
Main arguments for inclusion
There are many arguments about inclusion and children on the spectrum.
The philosophical argument around inclusion is that children should not be ‘segregated’ by disability. It is argued that the neurotypical children in a classroom benefit from having children with other needs/abilities present as well. Certainly anyone that has Michael in their class would be very lucky as he is the sweetest and most wonderful boy in the world, in my totally objective opinion.
Advocates of inclusion argue that all children should be fully integrated into mainstream classrooms at all times. This policy was born out of necessity. Historically many schools were so small that there were no facilities for children with special needs. And it was observed in these schools, that just had to ‘make do’, that the long term measurable results for children with special needs were better than in schools that did make special provisions.
Many studies since have confirmed that children enrolled in mainstream schools are more likely to graduate and receive higher marks than those in various special ed settings. Most of these studies do their best to control for ability level and compare ‘like’ with ‘like’. This is necessary because often children in a special ed setting will have more support needs than those in a mainstream setting and that may skew the results. But it can be hard to really control for things like that because of how diverse the needs can be. It can be meaningless to compare two children for example with ‘severe’ autism unless you know many other things about them as well.
Advocates of full inclusion argue that in a mainstream setting, children with autism have more role models of typical children, and their teachers have higher expectations. They argue that every child has a right to be included in a mainstream classroom no matter what their ability level is, and if there is need the classroom will need to be rearranged or all the proper supports put in place to ensure that the child can learn there.
Some arguments against full inclusion
Of course in reality most mainstream classes are not rearranged for the benefit of their special needs students. Teachers may get easily overwhelmed without special training. 61% of students with a disability report that they experience difficulty at school. 45% have learning difficulties, 27% had communication difficulties and 27% had difficulty fitting in socially. Some teachers argue that if they give the necessary attention and resources to the child/ren with special needs, the others suffer. Very few schools allow private therapists (believe me I’ve tried) and teachers aides can also be stretched quite thin.
While mainstream inclusion with 1:1 support may be the best solution, it is almost never actually available except in an often expensive private setting. Even if they have the facilities, many private schools refuse to enroll students with special needs beyond those deemed ‘high functioning’ because it may affect their placing in the state rankings. Many schools push parents to put their children into a special unit without even meeting the child for this very reason. (Yes this is often illegal. No I don’t want to use legal arguments to force a school to take my child as I want him to be fully accepted, not viewed as a burden.)
Arguments for special classes/schools
There are also arguments against full mainstreaming of all children. In a special needs environment there is more opportunity to practise social skills safely. There is also more opportunity to go at a slower pace for those that need it. A special education environment may have a higher teacher to pupil ratio (sometimes it can be 1:1). They are also more likely to tailor the routine and structure to the needs of a child. Other factors that may lead parents to choosing a special needs classroom may be the need for more care for their child if they have very high needs across several areas. Special schools will often have speech therapists, OTs and other facilities on site. Bullying and feelings of frustration or ‘not fitting in’ is also something that can prompt parents to move children to a special educational setting, especially in high school.
Real Life Choices Aren’t So Clear Cut
In reality often the choice isn’t between a special education classroom tailored to their needs vs mainstream. Most kids in a ‘special ed’ environment may be in a ‘general purpose special ed’ class that may not meet their needs any more exactly than a mainstream classroom does. As I noted above, 52.5% of students in a mainstream class will report that they experienced difficulties. But a huge 83.7% of students in a special class report difficulties so they may not solve any issues. Is this due to the fact that students in a special class have higher support needs in general? Maybe. But the percentage drops for kids in a special school (65.4% report difficulties). Possibly it is to do with increased demands in a special ed class and not enough specialized support to meet those demands.
Our Decisions so Far
This last year I have often considered putting Michael into preschool or playgroup. My paediatrician says a child is ready when they start to imitate their peers (even if not immediately) and try to engage with them. Michael doesn’t imitate them but he is very interested in what they do so he is likely ready.
I have tried special education settings and have not found one that was a good match for him. So far my solution has been to do a lot of one on one work with him at home to get him ready. For interaction I take him to as many playgrounds/swimming pools/settings with peers as I can so he can practise social skills there in an environment that he is comfortable in and that makes no other demands.
Next year when he turns four he is going to start preschool. He’s only going to do a few hours at a time, a couple of days a week. With a private therapist accompanying him at all times. Luckily that is much more of an option with preschool than with primary school. Michael will not be starting mainstream school until he is six. If that is where he goes in fact. So that gives us plenty of time. I will have time to test out the waters and see how much meaningful learning he does in that environment.
The question I always ask is – is this the optimal use of this three hour block for him? Is he learning as many valuable things here as he would in a different setting? Are his social skills improving? Is he enjoying himself? Is he engaged with the task and are his ‘other’ skills like self help, cognitive and fine motor skills suffering?
Primary School decisions
I remember the last time a paediatrician asked me what my plan was for my son’s primary school I said that I’ve changed my mind three times about that since breakfast. It was only 10am. Luckily he said that was the right attitude to have. And that is still my plan. When people ask (and they do that ALL THE TIME) where Michael will go to school, I tell them to ask me something easier like what we will be doing this afternoon.
When I decide on the level of ‘inclusion’ necessary for my son I always consider his skill level, the demands that will be placed, and what kinds of supports I can put in to help him.
Some important skills for inclusion
- Does Michael have the skills for participation in the most common activities? Some basic prerequisites for most preschool activities are:
- the ability to sit still for two minutes in a group environment,
- understand and maybe respond in some way to simple questions,
- some very basic colouring/drawing skills and early play skills.
- Some methods of communication are also necessary – not necessarily speaking, but pointing, and the use of PECS or other assisted communication would make life at preschool much easier. Most of these skills are still a pipe dream for us although we are working on all of them and with lots of reinforcement he can do some of them.
- When he goes to school, there are also some prerequisites (totally in my head) that he would need to function in a mainstream environment.
- He would need to be able to sit in a group without challenging behaviours (for at least 15 minutes).
- Be able to respond to group directions and have enough receptive language that he would be able to understand at least half of what is going on in the class.
- He would certainly need to have some more play skills and
- perhaps the ability to engage in a bit of group play.
- Toilet training while not absolutely necessary would also be preferred by that stage.
The Benefits of private aides
Michael is nowhere near reaching most of these goals without loads of support. Most of the time he can’t sit still for three seconds unless working for a reinforcer. With a reinforcer he can go for five minutes so that a one on one aide will certainly help with a lot of these goals. My assumption is always to go to the least restrictive environment where meaningful learning still happens. And I stand by that all the way.
A private aide can help Michael learn in a mainstream environment. Someone trained in his learning style and someone that knows him well would be of immense benefit. And that is why I am not too worried about preschool. But very few primary schools allow such an aide, unless provided by them. And the ones they provide are not trained in his type of therapy. Often they are not just limited to looking after him.
How to make a final decision
In the end inclusion is not about deciding what philosophy you follow and then going with it no matter what. The final decision isn’t about whether you go with mainstream, a special class, home schooling, or a special school. It is about what environment, out of the options available to you, your child learns the most effectively in, in that particular year. You may have a fantastic public school that is happy to have your little one and provides all necessary supports. Or you may not. You may be prepared to move to find a better environment or maybe you can’t. In important ways there is no final decision. They do and should change with your child as they grow.
Yes the assumption should always be to start with mainstream. Then if it doesn’t work try another mainstream. And only then to go to a special needs class. Your decisions will depend on the experiences you have already had. No amount of studies or philosophy can answer those questions for you. Only by exposing your child to different environments all the time, can you decide which one is the best one for him/her in any given year.