In our recent IEP snafu with Eon, I discussed his case with several people I’m close to who work in school systems. Some of them were very supportive of our push for inclusion and some of them were not. Those that were not met me with great resistance at every turn. All the research I brought up was scoffed at with “real world” examples of inclusion failures and negativity. They attempted to convince me that full-inclusion is an impossible goal, even though so many parents have fought for it successfully before me to the benefit of their children.
In the face of years of research, schools that have successfully implemented inclusion, and other countries that have gone before to mandate inclusion as default, most school systems and staff continue to insist that it’s impossible and will never work. Parents who push for inclusion and demand what is lawfully the education their child deserves are labeled “difficult” and “unrealistic”.
And it all seems so familiar – the resistance to change, the insistence on old ways contrary to all evidence, the negativity.
Suddenly, I remembered. I worked in long term care facilities, nursing homes, during college and all through occupational therapy school. At the time, if a resident had a fall, history of falls, or was at risk of falling, he was restrained in his wheelchair in some way, usually tied in with a posy belt or vest to keep him seated so he would not fall and hurt himself. In the eighties, research became prevalent showing that physical restraints of residents didn’t actually prevent falls as assumed and actually increased injury, as well as decreasing quality of life. At the time, at least 40% of nursing home residents had a physical restraint, although some estimate the numbers to be as high as 70%. In 1987, the Nursing Home Reform Act (OBRA ’87) was passed guaranteeing nursing home residents the right to be free from chemical or physical restraints imposed for the purpose of discipline or convenience.
BUT, in light of the new law, nothing changed.
Companies/facilities were made aware of the law and most educated their staff on possible alternatives to restraints and restraint reduction. But then when a resident fell, the first response was to tie them down. Because the law was not enforced, any other option was rarely discussed.
In 1990, federal regulations mandated restraint reduction policies in all long term care facilities with enforcement. The uproar was deafening. Even though all caregivers had been educated on alternatives to physical restraints, staff could/would not think outside the box of the way it was always done. Over and over I heard nurse managers and therapists bemoan how this new program would “never work”, “falls are going to increase,” “residents are going to get hurt,” “we don’t have enough staff to watch these people!”
I sat in a meeting and listened when, so ingrained was the old way, no one could come up with any possible alternative to a restraint after a fall. Silence reigned as they “brainstormed” solutions. When someone finally suggested a toileting schedule as the fall had occurred when the resident was taking himself to the bathroom, they were met with a chorus of why that wouldn’t work even as it was documented as the intervention of choice.
But it did work. And twenty-five years later, less than 5% of nursing home residents are restrained with no increase in falls and lower incidence of serious injury. I sit in meetings now after a resident falls and no one even mentions restraint as an intervention. It would never occur to them to do so. In fact, when I recently had a resident for whom a self-releasing belt might have actually been appropriate as a very short-term solution, no one thought to suggest it.
So when school staff members tell me that inclusion “doesn’t work,” I don’t believe them. I know from experience that old ways die hard and change is painfully slow in coming. I know that staff members, no matter how well-meaning, are people, and people don’t like change. The known is comfortable. We always default to the known. The familiar is easier.
But easy is not better.
One of Eon’s special ed teachers was new this year. She admitted that she was taught from an inclusion perspective in college and even did a research paper on it while student teaching last year. This year, one year into her teaching career, she’d already been brainwashed by the system enough to suggest he be taken out of full-inclusion where he was thriving and placed half days in a resource room for next year. Why? Basically, because that’s how they do it at that school.
Thinking outside the box often takes external motivation. Without the feds enforcing the OBRA ’87, nursing home residents would still be tied down. Nursing home administrations and staff didn’t stop that barbaric practice because of the compelling research, or a change of heart. They didn’t stop because of outraged family members. (Families didn’t protest, because they believed the staff knew best. Sound familiar?)
No, they changed their practice only under threat of losing federal funding.
And it begs the question. Is IDEA enough? We have the law on our side, although plenty of school systems are making us prove it by taking us through due process. Is it enough that some of us are willing to fight for our kids on an individual basis? Will we ever see real change this way? Or, twenty-five years from now, will another mom blogger be writing a post on the frustrations of getting her first grader included in general education?
I don’t think it is enough. I don’t think real change will happen until we see legislation and enforcement of legislation (aka, the loss of federal funding) making inclusion the default placement with adjustments from there, if necessary. Money talks and, frankly, it’s the only language school systems are forced to obey.
Please note: I, of all moms, recognize inclusion is not the right setting for every child. My other son, Bo, will start kindergarten next year in a self-contained classroom which is where he will thrive. But, inclusion should start out on the table at the IEP. We shouldn’t have to push to even get it in the room.
Self-contained classrooms, like nursing home restraints, should be the exception, not the rule.