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.

October 11, 2018October 10, 2018

Why You Should Hire Someone with Down Syndrome

Sally loves her job. She shows up on-time with a smile, and dedication to her work. She almost never misses a day, and her co-workers say she boosts morale. Sally also happens to have Down syndrome.

“Having a job is important to me, because I like to help people. I also want to earn a paycheck, so I can buy a plane ticket to visit my brother in Washington,” Sally explains.

She got her job with the help from Project Search; an international job transition program that operates in all 50 states and 10 countries. The program’s goal is to help individuals with cognitive disabilities find competitive employment, and keep it.

Upper Right is Theresa Raypole with Sally

Sally says “I learned to be organized in Project Search, and to always clean and sanitize.”

She wasn’t even sure she’d be able to participate in the program. Sally’s single mom works full time, and couldn’t get her to the program consistently.

Theresa Raypole, the coordinator and educator for our local Project Search program, says transportation is often an issue, but not something that can’t be overcome.

Although Sally’s mom was nervous, Sally decided to use the local city bus line to get to and from the Project Search campus. The program helped her learn how to use the line, and by the end of her internship she was riding independently.

Director Raypole accepts 12 students into the program each year, and by this spring’s graduation over half are already receiving competitive employment (they have a year from graduation to secure a job).

When students are asked “If you could go back to high school and tell your teachers what you need to be successful in life, what would you say?”

“Teach us to be comfortable around all types of people and work.”

“Talk to us about our future.”

“Teach us professionalism.”

“Get us out in the work world and community.”

“Teach us that criticism is ok. Teach us how to handle it, so we can learn from it.”

Their answers are common sense for any type of success, yet provides insight into society’s low expectations for them.

Unfortunately, only 17% of students with cognitive disabilities are included in general education classrooms in high school, and the lessons above are often absent during their educational career. Once they leave school, ONLY 24% of people with cognitive disabilities find work.

In our local Project Search program, students spend 9 months interning at a local medical center. Raypole says often medical professionals are at first nervous that individuals with cognitive disabilities are allowed in clinical situations.

But she says these professionals’ first impressions were quickly proven wrong. In her first year running the program two students were hired in the surgery department.

The head nurse found the surgery department was able to turn rooms over faster with these employees, and soon they created positions for more to be hired.

“It’s hard to explain to the business world that this is not just the ‘nice thing to do.’ It really will raise their bottom line,” Raypole argues.

Often employees with Down syndrome and other cognitive disabilities are highly motivated, loyal, prompt, and exceptional at customer service. They often boost co-worker morale and productivity.

Project Search students complete an internship customized to their interests. Even though they’re working in the hospital they may have an interest in landscaping or working with children, so the program creates a position for them to hone those skills.

“Every opportunity and challenge is faced during the internship. They quickly learn that they can’t just go to the break room whenever they want, or talk nonstop to their co-workers. These are all soft skills they never learn in high school. They learn to self-advocate.” Raypole explains.

“Project Search helped me learn to do things on my own and be confident,” Sally says.

Sally quickly found employment after graduating from Project Search. Now she works for a local high school’s food services division.

She gives this advice to other individuals with Down syndrome looking for work:

“I would tell others to work hard and always do their best.”

Want to find a Project Search program in your area? Head here.

For more information on employment for individuals with Down syndrome head here.

October 2, 2018October 2, 2018

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.

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

September 25, 2018September 25, 2018

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!

September 25, 2018September 24, 2018

What My Child’s Behavior is Telling Me

When I gave feedback as a teacher to parents with a student who misbehaved I always used a “complement sandwich.” It went something like, “Johnny always helps his friends with map skills, but he often talks out of turn. I know he’s a smart young man and can learn to raise his hand first when others are talking.”

So, when I think about my own smart young man’s behavior, I’ll start with a complement sandwich. Just this week, the bus driver told me “Troy is the most polite boy he’s ever met. He’s always saying please and thank you; most kids twice his age don’t do that.” I blushed instantly. My child is amazing, I thought. That same day I got a call from his teacher. Troy has been pulling off his shirt at circle time. She had to threaten to throw it away, before he would stop. Oh, dear!

Read Related Post Here: Why Your Child Needs a No-Consent Letter for Seclusion and Restraint

Troy is an amazing kid, but he’s also VERY impulsive and loves to get attention (any kind of attention). If you’re thinking this sounds like most 4-year-olds, you’re right. Still, Troy’s persistence in impulsivity, avoidance, and negative attention-getting trumps most preschoolers. When I compare his behavior to his typical twin’s there’s one big difference: the threat of consequences in one moment doesn’t occur to Troy the next time he decides to exhibit the same behavior. He just doesn’t remember, or doesn’t care.

In fact, 30% of children with Down syndrome have behavior problems. Left untreated, these behaviors often cause problems with keeping a job and living independently as an adult.

I’ll be honest, sometimes Troy’s behavior drives me crazy. When he’s thrown food he doesn’t like for the hundredth time or decides to do the “lumpkin” right in the middle of Kroger because he doesn’t want to leave I often just want to SCREAM. That’s why I bought a new book especially targeted to behavior of kids with Down syndrome called “Supporting Positive Behavior in Children and Teens with Down Syndrome” by David Stein. I was lucky enough to also see the author speak at this summer’s National Down Syndrome Congress‘ Convention in Sacramento.

I often don’t know what to do about Troy’s behavior in the heat of the moment. Stein says that’s normal, and when you don’t know what to do think about your relationship with your child. Do they feel safe? Can they communicate their needs in some way, whether it’s verbal or through a visual? Stein says the most important factor in our loved one’s development is their relationship with parents or guardian. Attachment helps your child stay regulated and motivates them to do their best.

When Stein spoke about the “brain-based reasons” for misbehavior in children with Down syndrome, I realized why Troy was so different than his typical twin. He explains that their are “key differences in the frontal lobe, hippocampus, temporal lobe, brain stem, and cerebellum that leads to different functioning in: communication, social engagement, the “social-emotional radar,” information processing, motivation, and executive functions.”

Read Related Post Here: The Quiet Before the Storm

The best advice I got from Stein’s book and workshop was his “respond, don’t react method.” It’s a simple concept that’s not always easy to implement. He gave 4 tips for setting our family up for success:

Establish routines (we do this already, because I’m an obsessive routine person…and it really works for Troy)
Visual schedule (I wish I was better about implementing this. We do have a food schedule that Troy loves. This takes a lot of planning and prep work. I could use one for when we’re out and he doesn’t want to leave)
Brief, simple language (sometimes Troy just doesn’t understand what I’m asking him to do when he’s upset or I don’t understand him)
Keeping emotions in check (this is the hardest one; I always feel like Troy is misbehaving to upset me…logically, I know this is untrue, but it’s hard to remember this in the heat of the moment)

Stein says it’s important to think ahead of your child’s common behavior problems. I finally did this when Troy’s “lumpkin” situation got out of hand. He’d fall to the ground and weigh a thousand pounds any time he didn’t want to leave the pool, library, park, etc. I created a simple visual schedule for his most common destinations. For example, at the pool I showed a picture of the pool, then the shower and dressing room, then eating a granola bar in the van, then watching his favorite show at home. I told him if he could watch Jake and the Neverland Pirates if he just followed the steps. He loved the visual schedules and it solved the problem for those locations.

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

Everyone wants a quick fix when it comes to behavior problems. Like anything else though, it takes time and thought. All your problems will not be solved overnight, but Stein says you’re looking for long-term positive change. I highly recommend “Supporting Positive Behavior in Children and Teens with Down syndrome.” It’s a thought-provoking book, that you’ll come back to again and again.

How do you use positive behavior supports for you child? Comment below with your stories.

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