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Top 5 Blog Posts of the Year

2018 was a year of change for our family. The military moved us across country, my twin boys (one with Down syndrome) started kindergarten, and I started a special education advocacy business. So, far all those ventures have been a success. We found a school in Washington state that believes in inclusion. My twins are in the same general education classroom; my son with Down syndrome is receiving supports inside the regular classroom. With my youngest child still at home, I’ve started slow with my special education advocacy business…but things are heating up with phone calls from around the nation and some special clients locally.

What hasn’t changed is my need to learn everything about special education law, inclusion, and the disability civil rights movement. And I still love sharing what I’ve learned on this blog. Judging from my top 5 read blog post, you are eager to learn more too.

My New Year’s Resolution is to help more families advocate for their child with a disability in school. To secure their child’s civil right to a Free and Appropriate Education in the Least Restrictive Environment. To share what I’ve learned from this venture with you here. Please let me know if you need help. Click on the “services” tab on the menu to learn more.

So without further ado, here are the Top 5 Blog Posts of 2018:

  1. Least Dangerous Assumption: This theory that explains the bigotry of low expectations we set for people with disabilities will blow your mind. It will change how you view every IEP meeting you attend. It’s a must know in the new year!
  2. Why Your Child Needs a “No Consent” Letter for Seclusion and Restraint: It’s the blog post that I wish wasn’t in the top 5, but has obviously hit a nerve. This post consistently ranks in the top 3 blog post on my blog on any given day. It’s disturbing, and speaks to the dark side of special education. There’s been too many instances of seclusion and restraint across the nation this year. Still, the post gives you some guidance on how to prevent seclusion and restraint tactics from happening to your child. I gave my son’s school a “No Consent” letter as soon as we moved here. The district already has a policy against these tactics, but I respectfully and politely pushed to have this in his file just in case. The IEP team completely understood my concerns.
  3. Teen with Down Syndrome Wins Inclusion Case in Federal Court: The Down syndrome community and all special education students had a huge victory in federal court this year in the case of Luka vs. Hamilton County School District in Tennessee. Luka and his Mom sacrificed a lot to ensure he received the education he deserved; and their bravery has a positive impact on us all.
  4. Using a Recent Federal Court Case at Your Next IEP Meeting: Luka’s mom specifically talks about how you can use her son’s case at your own child’s IEP meeting to fight for inclusion. Her words will stay with you…check it out!
  5. 7 Research Studies You Can Use At Your Child’s Next IEP Meeting to Win the Fight for Inclusion: This was one of the most shared blog post of the year. Did you know there’s not one research study since IDEA was signed into law more than 40 years ago that says a separate setting shows an academic benefit for students with intellectual disabilities. Find out what the research says about all the benefits of inclusion!

What blog post was your favorite? What do you want me to write about in the New Year? Let me know in the comments below. We’re wishing you an inclusive 2019!

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Least Dangerous Assumption

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.

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The Crisis of Childhood Prolonged

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.

 

 

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

“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.

 

 

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How to Vet College Programs for Students with Intellectual Disabilities

Vineet Narayan graduated from high school last spring and during his gap year he’s on the hunt for a college program that fits his needs. Searching for the right college program is daunting for most students, but Vineet’s mom, Nithya Narayan, says sending her son with Down syndrome to college adds a few extra concerns.

Vineet Narayan

Although the college search process has been surprisingly typical in many ways, Narayan says “It did seem surreal to hear from schools and acknowledge the gap between having no access to curriculum and having to audit college classes, which seems incomprehensible. So I attended the State of the Art conference to see if he could really attend these programs without barriers. We want him to have the liberty to choose classes and make a career path, which is what the typical students do. As I was researching, some of these programs have definitive classes that they have to take which is not what we want.”

College programs for students with Intellectual and Developmental Disabilities (IDD) have increased by 73% in the last decade. Currently there’s around 260 programs across the nation. These programs range from fully inclusive community colleges or 4-year university settings with on-campus living, to segregated programs on college campuses. There is much to celebrate with this tremendous growth of post-secondary opportunities for students with IDD. But compared to the 7,000 college programs for typical college students across the nation we’re really still in the infancy of this movement.

Read Related Post: College Scholarships for Students with Down Syndrome

I’ve written recently about the good, the bad, and the ugly of these college programs. Although there is federal regulations for the few programs that receive federal funding (about 25 programs), the vast majority receive no federal or state oversight. It’s up to the college and increasingly parents to self-monitor the efficacy of these programs. So, how can parents and students ensure the program they choose lives up to their expectations?

“Parents and students don’t know what they want until they don’t get what they want. Students with Intellectual Disabilities don’t often go to college night like their typical peers. They go to transition fairs instead. There needs to be a whole mindset change starting in high school,” explains Think College Co-Director, Meg Grigal.

Think College is a great place to start your search. Parents and students can search for programs using an interactive map, and check out the organization’s new “How To Guide on Conducting a College Search.” Grigal says parents should share this with your child’s high school transition team to better prepare for that next step.

But don’t stop there! Jennifer Luebke and her 19-year-old son, Antonio, had to renew his college search after the program he was attending failed to keep promises of at least a 50% inclusive course load (As of February 2019, the matter has been resolved to the satisfaction of all parties). Antonio left the program after a year, and now Jennifer has many more questions for the next college Antonio attends. Even though your student may be looking for a different type of college experience, her questions could help guide your inquiry and get you thinking about what questions to ask.

Read Related Post: Bethel University Fails to Keep Promises of Inclusive Education for Students with Intellectual Disabilities

“We developed key questions that will hopefully reveal answers that go beyond the self-reported information on Think College and the college’s marketing materials,” explains Luebke. Parents from the Facebook Group “Families Think College” also chimed in with other questions that are added to Luebke’s questioning below:

  1. “Academic Inclusion: What courses (if any) are inclusive? Provide a list of catalog courses that are available for students with IDD to take where the coursework is modified and where they receive in-class and out-of-class academic support. Do you have courses where typically-abled students are also present, but their role is different from a student with IDD (e.g. as a mentor, co-enrolled as a lab to help students with disabilities, etc.)?
  2. Residential Inclusion: Do you have a policy that prevents a student with IDD from being roommates with a typically-abled student?
  3. Social Inclusion: Tell us how students with IDD are intentionally and regularly included in campus social activities?
  4. Job Training and Internships: How will you leverage his strengths to provide job training to him? What might a few conversation starters be to help him identify a good job fit? What internship opportunities do you have that might be a good fit for him considering his strengths? What percentage of students are employed after leaving the program?
  5. Parental Involvement: Do you require a student with a disability to be their own guardian? How do you determine what level of communication is appropriate with parents and how do you calibrate it?
  6. Metrics: What metrics do you track and how often do you track them to assess the effectiveness of your program and areas for improvement? With whom do you share your findings? How do you measure and assess each student’s learning and progress?
  7. Membership & Belonging: Are students in your program considered enrolled students in the university? Do they have full alumni benefits when the complete the certificate program? Do you have a separately published student handbook and policies apart from the general student handbook (with some areas where additional support is provided where needed).
  8. Philosophy of Inclusion: What is your program’s definition of inclusion or what is your program’s inclusion statement that guides the program?
  9. Qualifications: What are the program director’s educational background, work experience, and specific qualifications to run this program? Are the professors who teach the courses that students with IDD take qualified university professors? What training have the professors received in universal design? What training do students on campus receive about ability diversity?
  10. Please provide us a list of all students and alumni (and their parents and families) that we may contact to ask further questions about your program.”

Nithya Narayan says a “parent comments section” could provide invaluable real-life reviews of how a program actually operates. She says good programs are out there, if you know how to look. “When typical kids go away they shape their life by being an adult and making decisions on their own for their life, and we are very glad that opportunity is available for Vineet.”

How’s your child’s college search going? What is your child looking for in a program and have they found it? What questions have you asked? Share in the comments below.