Why Your Child’s Teacher Should Be Trained in Non-Violent Crisis Intervention

So, wow! My recent post about an 7-year-old old boy being dragged by his teacher really hit a nerve. Many of you were shocked to see the video, and thankful for tips on how to help prevent this type of abuse.

Others responded that a No-Consent Letter alone is ineffective if school personnel are not trained properly in handling crisis situations. I wholeheartedly agree! We may disagree as to whether restraint and seclusion techniques work, but I think everyone can agree that crisis prevention training can help decrease these type of incidences.

As a teacher, I was never offered any crisis intervention training. And after digging around, I found that I am not alone.

Just as there are no federal laws restricting the use of restraints and seclusion, there is also no mandate for crisis prevention training across the country. School districts lack the money it takes to properly train their personnel in non-violent crisis interventions. This will only get worse if Title II, A is cut. Title II, A is federal funding for professional development, but the Trump administration wants to scrap it completely.

Another problem is the least qualified staff are often paired with students who have disabilities and the most challenging behaviors. And now Every Student Succeeds Act no longer requires teacher to be “highly qualified,” which will likely make matters worse. The result is hundreds of cases of abuse or even death related to using restraint and seclusion techniques, according to federal figures.

Advocating for Better Crisis Prevention Training

What can you do as a parent or teacher to prevent an incident like the one in above?

First, advocate for a Non-Violent Crisis Prevention Intervention program in your school district: Find out what, if any, behavior intervention training your school staff receives. At the very least, your child’s school should have access to a behavior specialist who’s trained in non-violent crisis prevention intervention. Your child should have a Functional Behavior Assessment as soon as a problem arises. Don’t let the situation get to crisis mode.

The Crisis Prevention Institute is an international organization that has provided training to teachers for more than 35 years. Their Non-Violent Crisis Prevention Intervention includes one-day seminars that help teachers identify how behavior escalates and how to respond in appropriately during times of chaos.

The lead instructor, Maria Navone, is part of a fabulous podcast about advocating and carrying out non-violent crisis prevention intervention. She stresses that all behavior is communication. “Being able to step aside and not take this acting-out personally helps you think more clearly about what your intervention is going to be,” Navone explains.

The institute also has a 4-day Instructor Certification program. They offer on-site and online training, but it all comes with a hefty price tag. That’s why it’s important to also advocate for funding for teacher training.

Call, email, and tweet your Congressmen: Tell them not to cut Title II, A. It seems “professional development” has become a dirty word. School districts have a hard time proving the effectiveness of teacher training, and politicians can’t stomach the cost. But it’s important that Congressmen know that Title II, A could be used for non-violent crisis prevention training for teachers. If we have one less abused student, then the tax money spent is worth it.

Contact your Congressperson here.

Here’s the sample tweet I sent my Congressmen: @RepMikeTurner #TitleIIA is critical for school leaders and principals to do their jobs effectively; cuts threaten this ability. Get a sample email or call script here.

Also, advocate at the local level: You may have heard the saying “all politics is local,” and when it comes to education this is very true. Most school funding comes from local property tax. Only 5-10% of school funding comes from the federal government. That’s why it’s important to get involved with your child’s school board and advocate for better training in crisis prevention methods.

September 1, 2017September 2, 2017

Adult Twins, One with Down Syndrome, Inspire Hope

Our story of advocacy starts with two babies who shared a womb, born just seconds apart, whose bond is unbreakable.

Whose expectations at home are the same: respect, hard work, and love. The only difference between the two is about 4.36 seconds…

Twins really catches people’s attention. So having twins, one typical and one with Down syndrome, can often feel like a circus.

Troy (back) with his typical twin, Hunter (front) at 8-months-old

A normal trip to the grocery story with my twin babies garnered constant attention. If I had a dollar for every time someone tells me “You have your hands full,” I would actually make a decent wage at this stay-at-home-mom gig. If I had a dollar for every time someone stares extra long at both boys, trying to figure out how they’re actually twins, I could retire!

The likelihood of having twins, one typical and one with Down syndrome, is 14 in a million. If families blessed enough to have a child with Down syndrome take the moniker the “Lucy Few,” then we’re the “Lucky Ones.” I really should start playing the lotto (LOL)!

That’s why meeting other families with twins, one with Down syndrome, is so special. You feel like you’ve met a secret tribe that fully understands the blessing, and sometimes curse, of having children the same exact age with such different developmental paths. If comparison is the thief of joy, imagine watching your son with Down syndrome struggle to do things that come naturally to his twin. Still, it also comes with many surprising perks.

We never take life for granted, and both our boys are true fighters with an empathetic spirit.

You can imagine my excitement then to meet a set of successful adult twins, a typical sister and a brother with Down syndrome. I got a chance to see 39-year-old Katie and Kris Faith at the National Down Syndrome Convention this summer in Sacramento. Theirs is also a story of advocacy that has led to a life of self-determination and success for both twins.

“When we were born in 1978, our doctor was not encouraging. He suggested to our parents that they did not have to take Kris home. But leaving Kris at the hospital was NEVER an option for our family,” Katie Faith Lingo says. Undoubtedly, the Faith family decision to keep Kris was the exception rather than the rule at that time. However, Katie says her parents were adamant that what others saw as a burden, would end up being a blessing.

An Inclusive Family

Today, Kris works at California’s Department of Developmental Services as an office aide after attending the local city college. His sister, Katie, has a Master’s in Special Education and is an Inclusion Specialist at their local school district. It’s obvious that Kris’ disability led them to a path of service, but how did they get here?

The twins say it was their parents’ openness and determination to include Kris in every aspect of life. “Kris was accepted and loved. He was also expected to be a contributing member of our family with the same chores and responsibilities as all his other siblings,” Katie describes.

And it wasn’t always Katie who protected Kris. “I remember finding Kris pinning a guy to a locker in high school. After defusing the situation, I asked Kris: ‘what’s going on? Was he bullying you?’ Kris said ‘no, he was making fun of you!” Katie remembers.

At a time when inclusion didn’t exist, Kris’ parents pushed for him to be mainstreamed in his neighborhood school, sharing classes with his typical peers. “In middle school I earned the highest award, the Principal’s Award for Courage and Determination. I was also the ball boy for basketball. It was fun!” Kris describes. He went on to graduate from high school, and enroll in both general and special education college courses.

It’s obvious the doctors were wrong about Kris Faith. “Kris ended up influencing the path of my life, and has given our family the unique ability to see individuals with disabilities as more alike than different,” Katie explains. “I’m so glad I was born into a loving family. I’ve been given many gifts. One day I dream of being a famous author or song writer, but I feel like I’m already living the dream!” Kris exclaims.

The Faith twins’ story is such an inspiration to families like ours. They remind us that this unique road is worth it, and advocacy matters. Thank you Kris and Katie for sharing your story!

August 28, 2017August 29, 2017

Serving Up Sportsmanship Through Inclusive Tennis

Tennis requires a fast response time, hand-eye coordination and a lot of stamina. The non-profit, Buddy Up Tennis, is serving up these skills to athletes with Down syndrome and creating a community of tennis lovers.

Serve it, smash it, win it, love it!

The 90-minute weekly session I watched locally would have anyone’s heart rate up. More than 20 athletes with Down syndrome teamed up with “buddies” who also enjoy the sport. There was a half an hour of high-intensity calisthenics, another half hour of basic skill building, and then time to play the game.

“Buddy Up Tennis is my favorite MVDSA (Miami Valley Down Syndrome Association) activity. My buddy, Jeff, is so funny and I accidentally hit him with the tennis ball a couple times this Saturday but he just laughed,” explains athlete Walter May. Buddy Up Tennis even led to a job for May at the local tennis club.

The non-profit was started in 2008, when an Ohio mom, Beth Gibson, was playing tennis with her typical child and noticed her 3-year-old son with Down syndrome loved watching them play. “Will was always fascinated with tennis. Staff members at our tennis club soon volunteered to teach tennis to Will, and researched techniques for teaching children with Down syndrome in order to do so. As a result of this research, the need was identified for an organized tennis and fitness program for individuals with Down syndrome,” Gibson explains.

No experience is required and all individuals with Down syndrome 5-years-old and up are welcome to play. The program teaches the following skills:

specialized training in the fundamentals of tennis
improvement in muscle tone, core strength, agility, coordination skills
opportunities to expand social and emotional skills through sportsmanship and team building
connection to the Down syndrome community in your area

Buddy volunteers are at the heart of the Buddy Up Tennis program.

The buddies include a combination of tennis professionals and typical peers who love the game. Anna Jones, head coach for Dayton’s Buddy Up Tennis says the local group has a strong following. “It’s a great opportunity for everyone involved,” Jones says.

My Dad is visiting from California, and is an old tennis pro from way back. He was chopping at the bit to get out their and play. By the end, he’d made fast, new friends with 14-year-old Aljoon, who happens to rock an extra chromosome. “What an awesome program! I can’t wait for Troy to be old enough to play. Tennis is a great sport and these kids are gaining life-long skills they can use to stay active,” my dad happily describes.

In 2016, the United States Tennis Association named Buddy Up Tennis the “Adaptive Tennis Program of the Year.” Today there are 17 locations throughout the nation from Ohio to Texas.

Find out if there’s a Buddy Up Tennis program in your area or how you can start your own here.

August 14, 2017August 14, 2017

Worth More Than a Test Score

Want to really make a parent of a student with Down syndrome cringe? Bring up assessments, especially IQ testing. Sitting around a table, outnumbered by school professionals, describing in detail how your child doesn’t measure up. I’ve been through it (albeit, not IQ scores) and Troy is only in preschool!

Why is this being done and what can be done about it?

It’s understandable that schools must use some sort of assessment to decide eligibility for special education services. The key word here is “services.” Special education is not a place, but a service!

I repeat, federal law does not define disability services as a special education classroom, but instead a “free and appropriate education” in the “least restrictive environment.”

But many school district use IQ testing and other assessments to systematically segregate students.

The school district I taught in called it “tracking.” Supporters of tracking or ability-grouping say it allows students to learn at their own level, and prevents teachers from having to teach many different abilities in one classroom. I argue that the costs to students in the low-level, or special education classroom, negates the benefits to the students in the advanced classes.

Instead, why not follow federal law and court precedent that calls for inclusion with needed supports in the general education classroom? Why not execute a true “Individualized” Education Plan (IEP), instead of systematically creating “places” for groups of students to be served. If a student is best served in a separate room so be it, BUT it should not be an assumed, systematic practice solely based on the student’s test score or disability.

New Approaches to Assessing the Strengths and Weaknesses of Students with Down Syndrome:

“It’s misleading to take that one score and portray the entirety of that child. May be that child functions well when you do non-verbal skills. Parents should make it clear during the testing that the teacher should sit down and understand both your child’s strengths and weaknesses,” says Dr. Jamie Edgin of the University of Arizona.

For the past decade, Professor Edgin has been researching better ways to assess students with Down syndrome. Her team is currently working on two types of cognitive test batteries. The Arizona Cognitive Test Battery is for students 7-years-old and older, and a newer iPad assessments for preschoolers (some of whom are completely non-verbal) called the Arizona Memory Assessment for Preschoolers™. Unlike IQ tests, that are a global assessment with a cut off score, Edgin’s set of tests assesses multiple domains of strengths and weaknesses.

UC David MIND Institute is testing adults with Down syndrome

Another method being developed at the UC Davis MIND Institute breaks down scores below the IQ cutoff (the most common IQ tests are not able to measure cognitive ability below a certain level). “A child placed in a new special education classroom may be given the Stanford-Binet IQ test and obtain a floored score showing no variation in performance, which would give the impression that he is simply low functioning and has no real cognitive strengths or weaknesses,” says David Hessl, UC Davis professor of psychiatry and behavioral sciences and the study’s senior author. “But if our scoring method is used, you are likely to find that particular verbal skills are relatively better, or there are unique visual spatial strengths, and that might help you to better serve his needs.”

The problem is neither of these new methods to test students with Down syndrome are widely available in school districts across the country. “You have to function within the way the school system works. These batteries haven’t been around long enough, and tested enough students to be widely accepted,” Dr. Edgin argues.

So, what do we as parents do when our child’s school wants to use a traditional IQ test?

3 Alternatives to Traditional IQ Testing of Students with Down Syndrome:

Refuse: IQ Testing is NOT required for Special Education services, so many parents refuse the test. Even when a school district argues that a designation of “intellectual disability” cannot be used without an IQ score, parents have gotten around the pesky assessment. Usually by using the “Other Health Impairment” designation instead. Both ID and OHI should be measured by a wide range of assessments and observations, not necessarily IQ scores. Before your child turns 18-years-old, find out what your state requires for eligibility to adult services. Some states require an IQ score to receive these services.
Request a Better Test: Professor Edgin says it’s worth asking for a Differential Abilities Scale, which gives a wide range of scores with strengths and weakness. If your school refuses, and you have the financial ability, an outside assessment may be worth your child’s time.
Advocate: Ask what test is being given and how the scores will be used. It’s your right to know which assessment your child will be given, and what impact it will have on their education. Never sign an IEP or assessment form without understanding the implications of test results. Another good tip: ask for the test results before the IEP meeting. That way you can leave your emotional response to the test results at home, and better advocate for your child at the meeting. Also, ensure that strengths and areas for improvement are a focus of any conversation.

Know that your child is worth more than one test score. Know your child’s rights, and don’t be afraid to advocate!

August 8, 2017December 11, 2017

College Scholarships for Students with Down Syndrome Is The Pot at the End of the Rainbow

College acceptance for students with Down syndrome is a real possibility, as you learned in my very first blog post. But once you’re accepted, how do you pay for college tuition?

Ruby’s Rainbow, that’s how!

Ruby’s Rainbow is an amazing non-profit that grants post-secondary scholarships to students with Down syndrome. The scholarship recipients can use the money for a university, community college, or vocational program.

Ruby’s Rainbow creator and Executive Director, Liz Plachta says the non-profit gives over 40 scholarships every summer, each worth from $3,000 to $5,000 dollars.

This year, the organization raised a record $137,500 for 47 Rockin’ Recipients. Check out the winners here.

Ruby’s Rainbow is such an important organization, because college tuition for students with Down syndrome can sometimes costs more than typical college tuition.

At Syracuse University’s InclusiveU program, tuition can increase by $10,000 dollars to $24,000 a year if a student needs addition supports. That’s enough to make college out of reach for this group of students.

“Parents weren’t expecting to pay for college for their child who was born with Down syndrome a generation or two ago,” Plachta says. If a student with Down syndrome decides to go to a community college, Ruby’s Rainbow scholarships could cover the whole cost.

Also, the Higher Education Opportunity Act allows college students with cognitive disabilities to apply for pell grants or work study funds, but they still can’t get a student loan.

The inspiration for Ruby’s Rainbow is Plachta’s daughter, Ruby, who is now 7-years-old and rocks an extra chromosome.

“I knew I wanted Ruby to have the same opportunities as her older sister. I didn’t even know if people with Down syndrome went to college when Ruby was born. But I started researching and found college programs for student with cognitive disabilities…

…At that point, I was full force ahead. I wanted to raise expectations!” says Liz Plachta, Ruby’s Rainbow creator.

And raise expectations is just what she did!

“The non-profit’s growth has blown me away!” Plachta says. This year Ruby’s Rainbow almost doubled their applicants and recipients. Since 2012, the organization has provided more than $400,000 in scholarship money to over 150 students with Down syndrome.

“When we first started, my goal was to raise $2,000 dollars and give one scholarship. That first year we raised $20,000 and gave 10 scholarships!” explains Plachta.

One of the first scholarship recipients, Alex Bender, just graduated from University of Cincinnati’s 4-year Transition and Access Program (TAP).

Alex Bender, Ruby’s Rainbow Scholarship Recipient

“I love my college, University of Cincinnati, a ton! Now that I graduated my plans are to get a Job at University of Cincinnati Bearcats Athletics Department,” Bender explains.

Bender plans to live in a house or apartment near the University of Cincinnati with friends. She says Ruby’s Rainbow helped make all this possible.

Plachta says her next goal is to raise scholarship amounts. “Right now our scholarships make a small dent in college tuition. I want to make our impact even bigger,” Plachta says.

Of course, all of these scholarships are made possible through generous donations.

“I see a piece of my daughter, Ruby, in every single applicant we review. I hate to turn anyone away, but right now we don’t have the funds to give every applicant a scholarship,” Plachta explains.

Ruby’s Rainbow’s biggest fundraiser is on March 21st or World Down Syndrome Day. They ask donors for 3 ways to help:

Donate $21 (representing the 21st chromosome–people with Down syndrome have 3 copies of this chromosome)
Make a pledge to be kind to people of all abilities
And ask 3 friends to do the same

Plachta expects to announce this year’s winners in August sometime.

To find out how you can donate, apply, or find out about this year’s recipients visit Ruby’s Rainbow at www.rubysrainbow.org