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.

 

 

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.

 

 

Bethel University Fails to Keep Promise of Inclusive Education for Students with Intellectual Disabilities

Imagine spending $46,550 a year to send your young adult child to a university. For most typical college students, this price tag would bring with it a full college experience with a wide range of academic courses, dorm life, and internships. Now imagine that you’re spending that amount on your adult child with an Intellectual Disability (ID), and the university you sent them to fails to deliver on promises of a real, inclusive college experience. The family of a student with ID sues Bethel University alleging their son did not receive the inclusive education the program promised.

As of February 2019, the matter has been resolved to the satisfaction of all parties.

This seems to be the reality for at least a handful of students with ID who attended Bethel University Inclusive Learning and Development (BUILD) program in Minnesota. 19-year-old Antonio left the program after his first year, when his parents noticed the BUILD program did not provide enough inclusive classes or internship hours. “I wasn’t happy when the BUILD staff told us Antonio wouldn’t be taking any inclusive classes his first semester so he could ‘adjust’ to life on campus, but I went along with it with the understanding that he would have more inclusive courses in following semesters. Then 2nd semester rolled around and the only inclusive classes he was given were badminton and tennis. He would never be able to make it to 50% inclusive classes by the end of his 2nd and final year after viewing his schedule, so we left the program,” says Antonio’s mother, Jennifer Luebke. 

Read Related Post: InclusiveU: What College Should Look Like for Students with Intellectual Disabilities

Luebke and other parents filed an official complaint with Bethel University. From it’s own academic catalog and website, the BUILD program sells itself as a Comprehensive Transition Program (CTP), which means that it must provide students with Intellectual Disabilities (ID) at least 50% inclusive academic courses and internships. In return students with ID can receive federal grant and work-study money to make up the cost of tuition (if they qualify). When the school denied the claims late this summer, Luebke and one other parent filed an appeal.

“I feel like my daughter missed an entire college experience, because she never got to live in the dorms with someone of her choosing or take classes of interest to her like art and ballet,” says a mother who wishes to stay anonymous because she fears retaliation on her daughter if she speaks out. “None of the classes were inclusive. The program staff tried telling us that study hall was inclusive because they were at the library or that the ‘wellness and fitness’ classes were inclusive, but the typical students who worked with them were getting lab credit. In fact, she received a certificate in education, but never took one education class,” she explains. “I hope they’re making changes, but a parent friend whose child is in the program currently says they’re still upset with paying all this tuition for badminton.”

Read Related Post: Legislation Could Continue to Increase College Opportunities for Students with Intellectual Disabilities

Another mother of a BUILD program graduate who now wishes to remain anonymous, also corroborates these problems: “Students were supposedly placed in community settings, but the actual outcome was very limited due to poor planning, lack of understanding of transportation and minimal relationships with the internship site leadership. This resulted in minimal employment opportunities coming out of graduation from the program.  In addition, requests for ‘repeating’ the internships fell on deaf ears, with both Bethel and the state sponsor who paid the tuition for the class and vocational ‘mentor’. When Bethel indicated that study time/independent study was inclusive, it made me realize how defensive and baseless their positions were.  They have never promoted inclusion in academic classes, other than one drama class. It would have taken effort and substantial belief in inclusion for the program design to have success in that area; I don’t believe that ‘belief’ existed within the leadership at any level. Students were included in the Dance Team (non-academic) and many social activities, which led my daughter with Down syndrome to really enjoy the program in many ways.”

In an October 2018 response to the appeal, Bethel University President, Jay Barnes, admitted wrongdoing occurred in access to academic courses, but denied any wrongdoing in the housing and social aspects of the program. Barnes proposed some changes to the program and additional academic classes for the 2019-2020 school year. He also offered Luebke’s son 20% off tuition in their final year of the 2-year program.

Bethel University declined my invitation for an interview. The Department of Education official responsible for oversight of post-secondary education programs for students with ID also did not return my request for an interview. In fact, it seems there’s no oversight at all. “It’s important to understand the complexity of all of this. The consistency across all of the programs at this stage is very variable. What is required is quality assurance. Until there is an accreditation process there’s going to be problems,” explains Think College Co-Director, Meg Grigal. 

So, what are parents and students with an intellectual disability to do when searching for a post-secondary program? How can they ensure that the program delivers on promises? Visit www.inclusionevolution.com tomorrow for a follow up and call to action for those seeking out a credible post-secondary experience. 

What has been you or your student’s experience with post-secondary education? Please share your experiences with me below. Share what makes your child’s program successful, or how they can improve the program.

From Awareness to Advocacy at the Buddy Walk

Our local self-advocates proved how important advocacy is at our 15th Annual Miami Valley Down Syndrome Association (MVDSA) Buddy Walk.

Nothing About Us, Without Us!

Often good-intentioned parents and loved ones create fundraising events like the Buddy Walk to spread awareness about Down syndrome, but don’t include actual people with Down syndrome in leadership or advocacy roles. This mind set has got to change

Down Syndrome Affiliates in Actions gave me the idea of having our local self-advocates lead the Buddy Walk with a advocacy table. This idea started six months ago with a Self-Advocate Communications Workshop that you can read about here and here. At the workshop, teens and adults with Down syndrome learned the skills they need to become self-advocates and lead our Buddy Walk.

Related Post: “I Can!” A Communications Workshop for Teens and Adults with Down Syndrome

Our mantra is “I Can!” and our local self-advocates proved they can stand up for themselves and speak out about issues that are important to them. I’m so proud of them all: Anna, Walter, Sarah, Joe, Megan, Adam, Olivia, Bill, Pete, and Sally. After my own son, Troy, they all are the reason I have become such an impassioned advocate. They will always hold a special place in my heart!

Us at the Advocacy Table (from left: Adam, me, Joe, Bill, and Walter. The three guys in orange were are amazing UD Athlete volunteers that held down the fort while we all walked; oh, and there’s Sally way to the right)

These amazing self-advocates were the first faces hundreds of Buddy Walkers saw as they entered Fifth-Third Stadium. Capable, independent, proud! Imagine how powerful this is for a new parent who’s attending the Buddy Walk for the first time. They’re still scared; not sure what to expect. May be they’ve never met a person with Down syndrome. It’s so important that the leaders of the Buddy Walk, or any awareness campaign, be the very people we are trying to support. It’s imperative that they are seen for who they are: More alike, than different!

Self-Advocate, Walter May, giving a speech on home base at Fifth-Third’s Field

Each self-advocate had a special role at the Buddy Walk. I want to give a huge shout out to Walter May, who braved the masses and gave a rousing speech that had the whole Dragon’s Baseball stadium cheering! How inspiring to see an adult with Down syndrome, who’s proud of who he is, tell others about his experiences and what he values.

Related Post: Advocacy- Organ Transplant Waitlist Discrimination Bill

Anna, Olivia, and Joe escorted our VIP guests including Andrea Harker from Montgomery County Developmental Disabilities Services, Tamara Hawes from U.S. Representative Mike Turner’s office, and Ohio State Representative Niraj Antani. These three self-advocates had to get out of their comfort zone and talk to a lot of strangers. But after months of practice they nailed it.

Representative Niraj Antani also spoke about the newly introduced Ohio House Bill 332 that will ensure all people with disabilities can receive life-saving organ transplants like everyone else. I’ve been working with Rep. Antani all summer to introduce the bill, so it was so exciting to see our hard work coming to fruition. The bill would end discrimination on organ transplant waitlists. You can read a personal story of discrimination here in Ohio right here.

Related Post: Rockin’ An Extra Chromosome

Of course, we were able to fit in some fun amongst all the seriousness of advocacy. In fact, it was said by our Executive Director, Willie Cox, that our Advocacy Table was the most popular place to be. We had a party atmosphere! Playing Plinko, giving out Down syndrome bling, and spreading love.

Self-Advocates, Anna and Pete, showing attendees how to win big with Plinko
Self-Advocates, Olivia (left) and Megan, with Dragon’s Baseball mascot, Gem
Self-Advocate, Sally, went to the dark side LOL
Who’s the fairest Self-Advocate in all of the land?

I’m used to spending the entire Buddy Walk with my family, but they seemed to have a rockin’ time without me. My typical son, Hunter, absolutely LOVES the Buddy Walk. He talks about it all year long. Troy, on the other hand, can take it or leave it.

Have any questions about our Self-Advocate Table or want to start your own? Comment below and I’ll be in touch.

4 Resources to Help Teachers Include Students with Down Syndrome in the General Education Classroom

So, you have 35 years of evidence-based research and federal law behind you. Your child with Down syndrome has a teacher with an open heart and willingness to include him or her. But it’s the actual act of inclusion day in and day out that’s stumped teacher. It’s the “HOW” and “WHAT” to teach students with Down syndrome in the general education classroom that can often be difficult.

Let’s be honest, most general education teachers do not receive the proper training or support to include a child with an intellectual disability in their classroom. I have a Master’s in Education and only took two graduate level classes on special education. I received no hands-on training. So, I can empathize with teacher’s who are at a lost as to what and how to teach our children.

Related: 5 Tips for Including Students with Down Syndrome in the General Education Classroom  

The link above walks parents through 5 tips to help their child with Down syndrome be included. We know parents are the expert of their child, but it’s the teachers that need support. It’s a fact, that including a student with an intellectual disability takes some preparing and a village of support. Although following the law and having an open-heart is half the battle, teachers also need evidence-based resources that they can use tomorrow in class.

Here are 4 resources to help teachers include students with Down syndrome in their class:

1. The National Professional Resources, Inc.

  • I took a fabulous inclusion workshop by Richard Villa this past summer at the National Down Syndrome Congress Convention in Sacramento. He helped me find NPRinc, which is a treasure trove of professional development products for teachers. This is a the “HOW” of teaching students with Down syndrome.
  • Villa just published a quick-reference laminated guide to “Differentiated Instruction in the Inclusive Classroom.” You can find it here. NPRinc. also has hundreds of other books and quick reference guides to include students with disabilities. Look at the “Products by Topic” on the left, or enter “Down syndrome” in the search engine. You’ll find books on teaching students with Down syndrome to read and do math, as well as dozens of other topics.

Related: Federal Appeals Court to Decide if Student with Down Syndrome Can Stay In General Education Classroom

2. National Center on Universal Design for Learning

  • Universal Design for Learning is the wave of the future. This approach takes into account the fact that all students learn in their own unique way. It’s another “HOW” in teaching students with Down syndrome. The National Center on UDL has teacher toolkits and great examples and resources that teachers can implement right away. There’s 3 basic ways to reach all learners according to UDL:
  • Multiple means of representation to give learners various ways of acquiring information and knowledge,
  • Multiple means of expression to provide learners alternatives for demonstrating what they know, and
  • Multiple means of engagement to tap into learners’ interests, challenge them appropriately, and motivate them to learn.

Related: Promoting Inclusion through Universal Design for Learning

3. Common Core Essential Standards

  • In answering the “WHAT” of teaching students with Down syndrome, this is a great place to start. Common Core is a controversial topic, but some amazing educators took the standards grade-level content and broke it down for students with disabilities. “The purpose of the Essential Elements is to build a bridge from the content in the Common Core State Standards to academic expectations for students with the most significant cognitive disabilities.”
  • You can check out essential standards for grades kindergarten through high school right here.

4. Down Syndrome Education International:

  • I usually don’t like Down syndrome-specific learning techniques, because I think students with Down syndrome can learn like other students if the appropriate accommodations and modifications are used. But I do love Sue Buckley’s literacy and math techniques.
  • Buckley is the creator of Down Syndrome Education International, and she has educator online training. These one to two hour webinars offer research-based techniques, practical advice, and work examples. I’ve seen Sue Buckley in action at several conventions, and she’s amazing! Click here to register.

If you’re an educator, share your biggest challenge in teaching a student with an intellectual disability below. If you’re a parent, what do you wish your child’s teacher knew more about? Share your journey with me below or send me a private email!