Inclusion Evolution

Empowering Individuals with Down Syndrome at School and Work

Why Your Child Needs a “No Consent” Letter for Restraint and Seclusion

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Two Ohio teachers caught on video dragging an Autistic boy will not be criminally charged. The disturbing video below shows the teachers restraining the boy. The teachers still face possible disciplinary action.

This type of incident of restraint and physical punishment of students with disabilities is more common than you might think.

Two Ohio teachers drag an Autistic boy

A study of 99% of public schools by the United States Office of Civil Rights found that students with disabilities are restrained and secluded at a much higher rate than their typical peers. The office found that although students served under IDEA make up only 12% of the U.S. public school population, they make up 67% of students who were restrained or secluded.

That’s 70,000 students with disabilities who were restrained or secluded in the 2013-14 school year, for which the last data was recorded. Let that sink in for a moment. And assuredly there’s a lot more incidents that are not reported.

A “No Consent” Letter for Restraint and Seclusion

The best way to prevent this type of incident from happening to your child is to find out if your school’s personnel are trained in non-violent crisis prevention and to add a “No Consent” letter for restraint or seclusion in your child’s official records. The Individuals with Disabilities Education Act (IDEA) is very clear about this issue. The law states that school districts MUST consider the use of positive behavioral supports and Functional Behavior Assessment (FBA) plans if a child’s behavior interferes with their education or the education of others, but most do not.

Read Related Post: Why Your Child’s Teacher Should Be Trained in Non-Violent Crisis Intervention

I could never imagine my son’s teachers using the techniques the teachers above used and my son doesn’t really have any violent behaviors. Still, I have a “No Consent” letter on file. The statistics are not in your child’s favor, no matter who your child’s teacher is. It’s prudent to add this type of letter to your child’s record whether you like their teachers or not. The letter need not be adversarial, but instead puts in writing your expectations for behavior supports.

What should be included in a “No Consent” Letter

A “No Consent” letter will make it clear that you do not approve or consent to any harmful or exclusionary techniques. Include the following in your letter:

  1. Name and contact information for your school district
  2. Date that you send the letter
  3. Name of your child, birthday, and school they attend
  4. Describe your child’s disability and any behavior concerns you have
  5. Clearly state that you do not consent to any negative behavior techniques including: restraint, seclusion, physical management, seclusionary time outs, forcible holding, dragging, use of ties and straps, slaps, deliberate humiliation, or deprivation of nutrition or exercise.
  6. Clearly state your opposition to these strategies: This letter is to make it clear that I have not authorized or given consent to any of the above strategies being used on my child
  7. Add family emergency contact information in case any situation arises where the school feels they cannot respond in a safe and non-threatening way.
  8. Make clear that IDEA states that only positive behavior supports like a formal behavior analysis should be used. Add that you would like to be part of any team that develops a FBA plan.
  9. Add any effective behavior techniques that have worked in the past for your child.
  10. Ask that an IEP meeting be held if problems arise or persist.
  11. Thank them and remind them that you will be holding them accountable if any restraint or seclusion technique without your permission.

The last time Congress took up the issue was in 2010, but the bill died because of language in the bill that would have allowed restraint and seclusion to be written into the students IEP. Now the federal government under the new Every Student Succeeds Act is requiring states to reduce these “adversive behavior interventions.” Sadly, parents must be proactive about the possibility of restraint and seclusion until school districts and the government takes a clear stand.

If you want to see a sample of a “No Consent” letter click here. Do you have a no consent letter on file for your child? Has your child ever experienced this type of negative behavior strategy? Tell me what you think below.

 

 

Teaching Cultural Literacy Promotes Inclusion for Students with Down Syndrome

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Two years ago, my twin son’s preschool teacher gave them an assessment to identify common consumer products or stores like: Kroger, McDonald’s, and Walt Disney.

           

They both failed miserably. We were new to town and were used to shopping at the Commissary at our previous duty station. My kids, at barely 3-years-old, had not yet experience the magic of the golden arches or Mickey Mouse on repeat. I was offended by the vulgar consumerism in this assessment; not to mention the fact that my son with Down syndrome couldn’t yet verbalize his own name…how was he going to say “Kroger.”

Read Related Post Here: Promoting Inclusion Through Universal Design for Learning

So much about this assessment was wrong, but the essential idea behind it is important to understand. “Cultural Literacy,” coined by educator E.D. Hirsch, means having a familiarity with information that is common knowledge. His ideas became the basis of the common core standards. The problem is too many students with Down syndrome are not accessing the general education curriculum, and are therefore missing huge chunks of information that most Americans know and understand without explanation.

https://www.youtube.com/watch?v=joNh7p1HI3k

Special Educator, Janet Romo, says students with Down syndrome’s lack of cultural literacy only leads to unemployment, exclusion, and isolation. “My Master’s in Special Education really didn’t prepare me to teach students with intellectual disabilities. The textbooks will tell you these students need a lot of repetition, but often schools are just teaching life skills on repeat. I searched for modified lesson plans aligned to the general education curriculum, but there was nothing available. When my own daughter with Down syndrome reached middle school I realized there was no way for her to access the curriculum in a general education Social Studies class,” Janet explains.

So, Janet began creating her own. She now has a business and private Facebook group called Austin & Lily: Intellectual Disabilities and Education, that features tips for teachers and entire units of study aligned to general education curriculum at various reading comprehension levels. “I went back for my doctorate and focused on inclusion of students with Down syndrome. I now teach at the university level, and realized there was a great need for lesson plans to specifically teach these students grade-level curriculum at their level,” Janet says.

Read Related Post Here: 5 Tips to Include Students with Down Syndrome in the General Education Classroom

“It takes me about 8 hours to develop one book as part of a unit of study. I’ve stayed away from the high order thinking. I lay it out on a more basic level. They need to have pictures representating what you’re teaching. The research shows the more realistic the image the better, because they’re looking at these images literally,” Janet explains. Austin & Lily now has units of study for Social Studies and Current Events at all grade levels. You can find them here.

Austin & Lily Unit on George Washington

The Individuals with Disabilities Education Act (IDEA) and the recent Endrew Supreme Court Case require school districts provide meaningful benefit to students with disabilities in the least restrictive environment and with the general curriculum. Janet says many students with Down syndrome are good readers, but often can’t comprehend what they’re reading. Offering a visualization of the content can help build cultural literacy.

“I’m an advocate of the more background knowledge a person has the less difficult it is to visualize. Students with intellectual disabilities need to be exposed to a lot of vocabulary, people, places, things. Background knowledge needs to be built up. If you’re going to read a book about the Arctic, a good teacher must build up background knowledge, like a powerpoint about what happens in the Arctic, images, and words used there. All this prepares the student for the book. We’re preparing them for life by building up these schemas to help them understand,” Janet describes.

Janet says she plans to move on to creating units for other subjects, and says it will be a never-ending venture. Her goal is to sell licenses of her material to school districts. She wants all students with Down syndrome to have a basic understanding of common topics like Shakespeare, American Government, Biology and Current Events.

As for my twin boys, after living in Ohio for three years, both give a shout out to Kroger when we drive by now. They’ve only been to McDonald’s once, but my son with Down syndrome has an affinity for Mickey Mouse. Although I disagree with the way their preschool assessment was done, I do agree with Janet. Cultural literacy is one way to better inclusion in society.

Check out Austin & Lily’s products here, and join Janet’s private Facebook group here.

What successes and barriers to learning Cultural Literacy has your student with Down syndrome faced?

Least Dangerous Assumption

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If you’re a teacher or parent of a child with an Intellectual or Developmental Disability (IDD) understanding Least Dangerous Assumption theory could be life-altering for yourself and your students and/or children. It’s not a new idea, but it’s still a theory that should be thought of often and practiced ALWAYS.

What is Least Dangerous Assumption?

More than 30 years ago, Special Educator Anne McDonnellan stated that in the “absence of conclusive data, educational decisions ought to be based on assumptions which, if incorrect, will have the least dangerous effect on the likelihood that students will be able to functional independently as adults.” She also argued that educators should assume a student’s “poor performance is due to instructional inadequacies rather than student deficiencies.”

Read Related Post: Creating a Circle of Support

Wow! Even today McDonnellan’s argument totally flips special education around. The problem is not the child, McDonnell argues. The problem is how we instruct that child, and the environmental inadequacies the child faces. The least dangerous assumption is to PRESUME COMPETENCE of all children. Assume they can learn. Assuming they cannot learn leads to segregated settings, missed educational interventions, and ultimately dependence in adulthood.

Read Related Post: Everything is Still Possible

We must always presume competence. Society’s ingrained discrimination of people with disabilities leads us down a very dangerous path. Low expectations and segregation become the norm with this world view. It’s so important that every person is given the opportunity to be included and try participating in typical activities. Too often the a child has to prove they can participate in general education or an inclusive activity outside of school. When we presume incompetence and fail to give the child the support they need to be successful we are the problem, not the child.

You can learn more about Least Dangerous Assumption here.

Why do you think society has yet to fully embrace the Least Dangerous Assumption? How do we change this world view? Comment below.

The Crisis of Childhood Prolonged

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Having a child with an intellectual disability often poses a crisis of childhood prolonged. Do you treat your child like their chronological age or their assumed mental age? “Mental Age Theory” was coined by the same man that created the Intelligent Quotient (IQ) test and compares a child’s physical age with their intellectual or emotional performance. Proponents argue that it’s a useful tool to determine what a person can or cannot accomplish. Many within the disability community disagree, arguing that this thinking denies individuals’ right to an adult life, and ignores the idea of least dangerous assumption. We don’t know what’s possible, for anyone!

Read the Related Post: Teaching Cultural Literacy Promotes Inclusion for Students with Down Syndrome

Parenting a child with an intellectual disability often presents a much more gray area than a simple for or against the “mental age” theory. I want my son with Down syndrome to learn the same content as his typically developing twin brother. I want him to participate in age-appropriate activities and understand common cultural references. But he should also have the power to choose how he wants to spend his free time. For example, he really likes Paw Patrol and the talking Elmo doll. I know from my typical son’s activities that these choices aren’t necessarily age appropriate. Do I allow him free choice? The answer is YES, balanced with some intentional exposure to new activities as well.

My son with Down syndrome is very persistent about getting his daily dose of talking Elmo doll or some other toddler show or toy. But an opportunity presented itself. I waited until we moved across country and got rid of many of my kids’ toys, including some of those toddler toys. I soon learned that he was fine with age-appropriate shows and toys most of the time. He has forgotten about Elmo. Now he obsessively sings the opener to Super Why and wants to beat his brother in a round of Checkers. He’s moved on, because I pushed him to experience the next age-appropriate activities.

It’s important to note that I still give my son free choice in his desired activities. For example, he used his birthday money to choose a singing Mickey doll. He loves it! It was his choice. The problem is not with free choice, but presuming that they should only be exposed to activities at their mental age. My son often needs some intentional exploration of new age-appropriate activities to really start enjoying them. That does not mean that I force him to give up all of his desired activities. It can be both ways!

I’m hyper sensitive to this and other age-appropriate behaviors and activities. I want to balance my son’s right to choose his highly desirable activities with my desire to ensure he’s exposed to the same things as his classmates. And I think it’s just that: exposure. When I see adults with developmental delays still watching Barney or reading Dr. Seuss I have to think that may be they’ve been given no other choice. It could be their free choice, but it could also be that they’ve never been intentionally exposed to anything else. It’s a hard balance though: the desired activity versus the exposure to new age-appropriate activities.

Read Related Post: Yes, My Son with Down Syndrome Can Go to College

It’s so important that all people are exposed to age-appropriate, culturally relevant content at their cognitive level. If they still choose to partake in kiddie activities that’s cool too. But when a person is never given the opportunity to learn about Shakespeare or algebra or politics or sports that’s a problem. How can we expect our loved ones with developmental disabilities to be active members of their community and carry on a conversation about things that most people understand. They don’t have to know everything about everything, but how can we expect our loved ones to be included if they’re only exposed to toddler activities?

What’s your take? Do you struggle with this? Comment below.

 

 

7 Research Studies You Can Use At Your Child’s Next IEP Meeting to Win the Fight for Inclusion

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“Almost 30 years of research and experience has demonstrated that the education of children with disabilities can be made more effective by having high expectations for such children and ensuring their access to the general education curriculum in the regular classroom, to the maximum extent possible.”

Most parents of students with Down syndrome have heard a variation of the quote above, especially if you’ve tried fighting for inclusion. I assumed this statement was just hyperbole. I figured there was some truth in it, but that there was probably just as much research showing self-contained classes were more beneficial than inclusion. At least that’s what most school districts and even many parents would have you believe.

Imagine my surprise then, when I read the EXACT quote above in the introduction to the Individuals with Disabilities Education Act (read it for yourself right here). The actual law, supported by both Democrats and Republicans, states that a regular classroom with proper supports is best for ALL students with disabilities. I was a bit taken back, and wanted to know more about this research the law touted.

Read Related Post Here: 5 Tips for Including Students with Down Syndrome in a General Education Classroom

What I found was even more surprising. Did you know there’s not one quantitative research study, since research began on the topic, that shows an academic advantage for students with intellectual disabilities in separate settings? None! Zip! Nada! Here’s the research study citation to prove it: Falvey, Mary A. (Spring 2004) Toward realization of the least restrictive educational environments for severely handicapped students. Research and Practice for Persons with Severe Disabilities. 29 (1), 9-10. 

Luckily, I’ve learned a lot more about the research that supports proper inclusion for students with even the most severe disabilities as part of the Council of Parent Attorneys and Advocates Special Education Training. It’s a year-long course I’m taking to prepare for my own son’s entry into public education, as well as to fulfill my goal to help other families advocate for inclusion for their child. The information below is credited to the amazing Selene Almazan, special education lawyer who specializes in the least restrictive environment.

So, without further ado, below are 7 quantitative research studies that show the benefits of including students with even the most severe disabilities in a general education classroom:

In the area of IEP quality, time of engagement, and individual supports:

    1. In a 1992 quantitative study, Hunt and Farron-Davis found a significant increase in Individualized Education Plan (IEP) quality in measures of age appropriateness, functionality, and generalizations when students were moved from a self-contained classroom to a general education classroom. This was true even when the special educator stayed the same and moved with the child into the least restrictive environment. Experts interpret this to mean that there’s nothing going on within the four walls of a self-contained classroom that provides value and quality when stacked up against general education classroom settings.
      • Citation: Hunt, P., & Farron-Davis, F. (1992). A preliminary investigation of IEP quality and content associated with placement in general education versus special education. Journal of the Association for Persons with Severe Handicapps, 17 (4), 247-253.
    2. Two years later, the same researchers looked at engagement of students with severe disabilities within general education. They found that there was an increase in the amount of instruction for functional activities for students with severe disabilities within general education compared to self-contained classrooms. Students in self-contained classrooms were less engaged and more isolated.
      • Citation: Hunt, P., Farron-Davis, F., Beckstead, S., Curtis, D., & Goetz, L. (1994). Evaluating the effects of placement of students with severe disabilities in general education versus special education. Journal of the Association for Persons with Severe Handicaps, 19 (3), 200-214.

3. Similar results were found in a study of a small group of students with severe disabilities. Some of the students were placed in general education and some were in a self-contained classroom. The study found the general education setting provided more instruction time, a comparable about of one-on-one time, addressed content curriculum more, and engaged in peer-modeling more.

  • Citation: Helmstetter, Curry, Brennan, & Sampson-Saul, (1998). Comparison of general and special education classrooms of students with severe disaitatebilities. Education and Training in Mental Retardation and Developmental Disabilities, 33, 216-227.

Read Related Post Here: So you survived IEP season? 3 steps to get organized NOW for the next one

In the area of non-academic time and individualizing supports:

4. A 2000 quantitative study found 58% of time spent in a self-contained classroom was classified as “non-instructional,” compared to 35% of the time in a general education classroom. The students with severe disabilities in general education classroom were also 13 times more likely than their typical peers to receive direct instruction during whole-class time, and 23 times more likely to receive one-on-one support. This challenges the common argument that students with disabilities cannot receive individualized instruction in a general education setting.

  • Citation: McDonnell, J., Thorson, N., & McQuivey, C. (2000). Comparison of teh instructional contexts of students with severe disabilities and their peers in general education classes. Journal of the Association for Persons with Severe Handicaps, 25, 54-58.

In the area of student outcomes and impact on typical peers: 

5. A 2001 study out of Indiana looked at academic progress for students with disabilities in general education and self-contained classrooms over two years. 47.1% of students with disabilities in general education made progress in math, compared to 34% in self-contained classes. Reading progress was comparable in both settings. Interestingly, the study found typical peers made higher gains in math when students with disability were present. Researchers hypothesized that extra help and supports in these classes created gains for all students.

  • Citation: Waldron, N., Cole, C., & Majd, M. (2001). The academic progress of students across inclusive and traditional settings: a two year study Indiana inclusion study. Bloomington, IN: Indiana Institute on Disability & Community

6. A study looking at the outcome of 11,000 students with all types of disabilities found that more time in a general education classroom correlated to less absences from school, fewer referrals for misbehavior, and more post-secondary education and employment options.

  • Citation: Wagner, M., Newman, L., Cameto, R., and Levine, P. (2006). The Academic Achievement and Functional Performance of Youth with Disabilities: A Report from the National Longitudinal Transition Study-2 (NLTS2). (NCSER 2006-3000). Menlo Park, CA: SRI International

7. Many schools and parents make the argument that typical peers may be negatively impacted by the presence of students with disabilities. Especially those students with behavior problems. But a 1998 study out of Montana found that inclusion does NOT compromise a typical students academic or social outcome. The Indiana study above shows they actually make more progress because of inclusionary practices.

  • Citation: McGregor, G., & Vogelsberg, R.T. (1998). Inclusive schooling practices: Pedagogical and Research Foundations. A synthesis of the literature that informs best practices about inclusive schooling. University of Montana, Rural Institute on Disabilities.

So with all this proof, why are students with intellectual disabilities still only being included in general education 17% of their day on average? Tell me below why you think this is the reality for our loved ones. I’ll do a blog post giving my answer as well.