Inclusion: What does that mean, anyway?

            In 1992 “Inclusion” was the big movement for people with disabilities, especially children with significant disabilities. I was a recent college graduate working with babies in early intervention. One of the best jobs anyone who loves kids with disabilities could ever have, as far as I am concerned.   I was lucky enough to attend the National Down Syndrome Conference with my classroom partner. This was the year that the Americans with Disabilities Act went into effect and Corky, from Life Goes On, was one of the most popular characters on TV. Full inclusion was the only way to educate kids with disabilities in the public school, in daycares, and in pre-schools. That was the message I received loud and clear.

            I bought the whole concept, hook, line and sinker.  The only way that kids should be taught was together. Kids with disabilities were being discriminated against if we didn’t have them in the typical daycare that their neuro-typical peers attended or in the neighborhood schools that they would have attended were it not for their disability.  After attending a particular workshop at a state wide conference, I called the director of the site I worked at and told her that we couldn’t keep our own daycare children in developmentally appropriate classrooms that they had to be in age appropriate classrooms. And to add weight to my argument, I told her that I had spoken to the lawyers leading the session about it. My poor director! Her first question was whether or not I had given the name of our program.  Don’t get me wrong, she was all about doing what was best for kids. I was just so young and naïve, that I didn’t have any idea about logistics and organizational structures and fixed mindsets.  Nothing is ever as simple as moving a child from one location to another. If it were, there would not be an ongoing discussion today about what inclusion is.  The whole issue would be a non-issue.

            Lucky for me, Jeanne (my director), knew me and knew my passion. She knew I was in the business for the good of kids and my exuberance was something to be nurtured and my impulsivity something to be tamed.  I collected all the information that I had gathered at the conferences and I put together parent trainings on inclusion and the importance of kids being together. I pushed for children to be placed in their home school districts in their neighborhood schools.  I was passionate about the injustices I saw in pre-schools and daycares trying to get directors and teachers to see just how important it was to include kids with disabilities with their peers.  I saw myself as a champion for the babies and toddlers I taught.  What I didn’t understand at the time was the babies and toddlers I taught needed instruction in very basic skills to be successful in those environments I so desperately wanted them in. 

            It was all about location, location, location for me at that time.  I didn’t really understand FAPE (Free Appropriate Public Education) or instruction.  I believed that if we put all kids together, then all kids would learn what they needed to be successful in life.  A very green and dangerous way to look at learning.

            As I grew in experience and spent more time with children with disabilities, especially autism, multiple disabilities, and intellectual disabilities, I discovered that location, while an important considerations, was not going to make the difference in what a child learned. What made the difference, in the long run, was how the child was taught.  The goal was, and still is, to provide FAPE to every student, and that education looks different for every learner receiving special education services.  IDEA (Individuals with Disabilities Education Improvement Act) requires every IEP (Individualized Education Plan) team to look at where a child is going to receive instruction. The first place that every team is supposed to begin with is the general education environment in the child’s home school. From there, it is a continuum of services that range from a special education teacher pushing into a general education classroom, a student going to a resource room, to a completely separate specialized setting and many other options in between.  FAPE is about where a child can learn the skills necessary to be a full participant in their own lives and where a child can learn the skills needed to be a productive participant in society.  What skills does a child need to function in a job, in their community, and in their homes? 

            The word inclusion is not found anywhere in IDEA. I think that is a good thing. Don’t get me wrong, I still want all people to be part of society, contributing, participating, loving, playing, working, worshiping, and all the other ‘ings’ in the world. I want all communities to value every member for his or her unique contributions, however to have every member contribute, every member needs to be taught skills.  Life is not all about being social.  Life is not about sitting quietly and raising your hand and not causing trouble when you are with other people. Life is about participation! It’s about being part of what is going on around you and making choices and doing what I can for myself and helping others.

Life is a set of complex wonderful challenging adventures and it is the boring and mundane tasks that have to be done.  People with disabilities have to be able to navigate all of life to the best of their ability so they can be part of, not observers, of everything.  Skills have to be directly taught, practice, practice, practice has to happen, and mistakes have to be corrected in safe environments.  The questions is, where is the best place for all of these things to be taught?  Is it the general education classroom full time? Part time? Is it in a resource room or a self-contained classroom?  Is it a completely separate school that specializes in certain disabilities?  No one, and I mean no one should ever try to answer those questions for all children with disabilities.  Every child is different and the needs of each child have to be addressed in the way that is best for that child.  There is no one answer for all. 

The debate around inclusion is really a false narrative.  Special Education is not about a place, it’s about a service. IDEA has it right when it places FAPE at its core.  If we don’t teach children the skills they need to participate in their life, no matter what that looks like, then we doom them to a life of watching and not engaging.  All children do learn from each other and expectations are higher for our students with disabilities when they are with their neuro-typical peers, however we have a responsibility to make sure that those expectations have a chance of being met.  Skill instruction in safe and supportive environments is the key to long term happiness for everyone.  By being respectful of that for every child, we are giving them the best opportunity possible to reach that goal of participation and, really, inclusion. 

Over the years I have learned that true inclusion is so much more than the age appropriate classroom and the location of a child’s instruction.  Inclusion is about helping kids to reach their fullest potential so they can participate in life and have those wonderful exciting adventures and the dull and mundane tasks that have to be done.  So the next time you sit down with a child’s team to discuss the IEP and the services that child needs, ask yourself these questions:

  1. What are the skills he needs to participate in his life as fully as possible?
  2. Where can we most effectively and efficiently teach those skills?
  3. Where can he practice those skills? 
  4. By teaching this skill are we giving the child more independence?
  5. How are people going to view this child if he learns this skill?
  6. Is this skill going to be needed when he is an adult?

Our ultimate goal has to be inclusion for all people. In order to achieve that goal then people have to have skills.  Don’t get caught up in the minutia of location, get caught up in the minutia of skills.  Without the skills, children will just be observers, and no one wants to spend their life as just an observer. I want the kids I teach to be fully part of everything going on around them!