Inclusion Evolution

Empowering Individuals with Down Syndrome at School and Work

Promoting Inclusion Through Universal Design for Learning

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Students with Down syndrome face many barriers in education. My son is only in preschool and he already deals with teachers’ preconceived notions of Ds, improper assessments of what he knows, and difficulty communicating his needs and wants.

Supported by research and federal law, Universal Design for Learning (UDL) turns the traditional one-size-fits-all model of teaching on it’s head. UDL breaks down barriers to education, and creates a path to inclusion.

At its core, UDL encompasses three principles—”that instructors should provide students with multiple means of representation, expression, and engagement. In lay terms, this means that, to the extent possible, instructors should (a) provide content or materials in multiple formats, (b) give learners multiple ways to show what they know, and (c) use multiple methods of motivating learners,” according to the Academy of American Colleges and Universities.

Many good teachers do UDL without realizing the terminology for what they’re doing. When I taught in Utah I used to have my history students do a year-long project. Every student got to choose if they wanted to work alone or with a group. They also got to choose their own topic, as long as it fit the year’s theme, as well as the medium (performance, mini-documentary, website, paper, or science fair-type display board). If you would have asked me then how I came up with this UDL curriculum, I would have said “what’s UDL?”

So, how can teachers implement UDL in their classroom to create a path of inclusion for students with Down syndrome and other disabilities? Start here:

https://www.youtube.com/watch?v=MOUdmzaZrc8

 

First your child’s strengths should be evaluated, along with how they learn. Teachers should focus on the “big picture” of what they want students to know, and the different was to assess what students have learned.

The 3 Principles of UDL include: 

  1. Giving learners different ways to acquire information
  2. Giving learners different ways to demonstrate what they’ve learned
  3. Tapping into learners different interest, challenging them appropriately, and motivating them to learn

I recently took a fabulous workshop on UDL at the National Down Syndrome Congress Conference in Sacramento. Some of the ideas for our students with Down syndrome included technologies like text to speech, apps that change the reading level of books, Google classroom, word prediction for writing, graphic organizers like Kidspiration, and personalized videos to show what your child knows.

Check out this link for specific apps and ideas to share with your child’s school.

Federal policy under Every Student Succeeds Act and the Higher Education Act, encourages the use of UDL to reach all students. These updated federal laws state that UDL helps all students significant opportunities to access the curriculum. This is not just a nice way to teach, but a way to follow the law. Ask your child’s teacher and IEP team today about how they plan to implement UDL to ensure your child is included in a meaningful way.

How does your child’s class use UDL to reach all students? Let me know below. Below are some books you can gift to your favorite teacher.

 

Endrew F. In Action

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It’s been almost a year since the U.S. Supreme Court (SCOTUS) ruled schools must be held to a “markedly more demanding” standard when educating students with disabilities. The case of Endrew F. (Drew) vs. Douglas County is the disability community’s Brown vs. Board of Education. It should have a far reaching impact on America’s 6.5 million students with disabilities.

With IEP season in full swing, the question is: are parents using this case to advocate for higher expectations for their child with a disability?  

With most students’ annual IEP meetings coming up this spring, there are some easy ways to incorporate this important SCOTUS decision into your child’s IEP meeting to ensure they’re getting a meaningful education. Below are some quotes you can use at the IEP table, to get what your child needs.

There is worry from some disability advocates that Endrew F. will be used against students with the most significant disabilities, especially when it comes to the “least restrictive environment clause” of IDEA. In fact, two court cases are advancing to the Ninth and Sixth Circuit Court of Appeals about this very topic. The questions in these cases: How will the courts interpret Endrew F. for students with intellectual disabilities? Can these students only receive “more meaningful benefit” in a self-contained class? Read how the school boards are using Endrew F. against the students in these cases in the related post link below.

Read Related Post: How School Boards are Using Endrew F. Against Students with Down Syndrome

Right now, you can prevent your child’s district from using Endrew F. to segregate your child by using the SCOTUS language in favor of protecting parent IDEA rights. Two quotes in particular could help:

  • This new standard requires a “prospective judgment by school officials” that “will be informed not only by the expertise of school officials, but also by the input of the child’s parents and guardians”
  • School authorities should offer a “cogent and responsive explanation” for their decisions

Use 3 magic words to get a “cogent and responsive explanation” for school’s decisions you don’t agree with: Prior Written Notice. Schools are required by federal law to give you Prior Written Notice to explain any decision they make. SCOTUS says this explanation needs to be “cogent” and “responsive,” and it’s important because it creates a paper trail if problems persist.  Read more below.

Read Related Post: 3 Words That Will Transform Your Next IEP Meeting

There are already some great resources out there to help you use Endrew F. at your child’s next IEP meeting. I especially love Understood’s easy to fill-in worksheet that relates Endrew F. to what your child’s IEP says. You can find it here.

How do you plan to use Endrew F. at your child’s next IEP meeting? Are you worried about your child’s district using Endrew F. against your child with a disability? Tell me what you think below. 

Military School Choice Bill a Bad Deal for Students with Disabilities Too

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My husband is up for military orders soon. Another move, our 5th in 13 years of marriage, brings with it a new kind of anxiety this go round. That’s because my twin sons will be starting kindergarten. Choosing the right school in a new state where you have no family support would cause any military mom to be anxious, but I have the added worry of getting appropriate service for one of my sons who has an intellectual disability.

Then this happened just last week: H.B. 5199 was introduced by Indiana Representative Jim Banks to amend the Elementary and Secondary Education Act of 1965, to allow parents of eligible military dependent children to establish Military Education Savings Accounts.

The bill sounds really great, right? Vouchers for military families to spend on private school tuition or homeschool costs. But the devil is in the details, and the costs outweigh the potential small benefit. First, where are they getting the money to give to military families? The bill, backed by Secretary of Education, Betsy Devos, would take money from public schools around military bases. It’s important to note that 80% of military children attend public schools. 

Public schools are funded primarily through local property tax, but schools around military bases lose out on crucial tax revenue because federal land cannot be taxed. That’s why Congress created a Federal Impact Aid in the 1950s, to offset this lack of property tax revenue, and supplement public schools around bases with additional federal dollars. H.B. 5199 would take $1.9 billion taxpayer dollars from Impact Aid to give to military families to use on private school tuition or homeschooling.

Read Related Post: How Military Service Creates a Secure Future for Our Son with Down Syndrome

There’s so many reasons why this proposal is wrong. Below are some links to understand why, but today I’m going to talk about the negative impact on military children with disabilities.

  • National Military Family Association blog post, School Vouchers are Not the Answer
  • Military Officers Association of America blog post, Will Proposed ESAs Help or Hurt Military Kids?
  • Military Times op-ed, Military School Choice Plan a ‘Bad Deal’ for Families

If your military child is on an IEP, you should be very wary of any voucher proposal. Especially a proposal that plans to take taxpayer money away from public schools were most of these children with disabilities receive needed supports and services. Leaving the public school system, means your child forfeits his or her many rights under the Individuals with Disabilities Education Act (IDEA). Private schools do not have to provide meaningful education, specifically designed instruction, accommodations, modifications, or any other supports found in the Individual Education Program (IEP).

Most private schools I’ve called will not accept my son, who has Down syndrome. They say he would be better served in the public school setting. But even if a private school will accept your child with a disability, you will likely not be able to fund private tuition with the $2,500 and $4,500 the bill is proposing. Private schools often require the parent to pay out of pocket for special services for their child with special needs, like a 1:1 aide, therapists, and assistive technology. With the average private elementary school costing $7,770, plus the cost of paying for disability-related services, my husband’s military officer pay wouldn’t cut it. We could homeschool, but again we’d need supplementary tutoring for reading and math which costs more than the allotted amount in this bill. Not to mention all those families who cannot homeschool.

So, what can you do about this bill? Stop it in its tracks now before it gains any more momentum! Tell your representative that the military families this bill espouses to help, don’t support the idea.

Call the sponsor of this bill, Indiana Rep. Jim Banks at (202) 225-4436 (who ironically lives in a state with no major military installations). Tell him you’re a military spouse who sends your child to public school, and you do no support H.B. 5199 for the reasons stated above. Keep it personal. Tell him or his staff about your child, and how this would be detriment to their education and the education of all the children left in these underfunded public schools near military bases.

You can also call NE Senator Ben Sasse and SC Senator Tim Scott and tell them to kill the Senate version of the bill S. 2517.

The House bill already has 29 co-sponsors, so it’s up to us to #killthebill. See if your U.S. representative is cosponsoring the bill below, and click on their name for an email or phone number.

Cosponsor Date Cosponsored
Rep. Scalise, Steve [R-LA-1]* 03/07/2018
Rep. McHenry, Patrick T. [R-NC-10]* 03/07/2018
Rep. Walker, Mark [R-NC-6]* 03/07/2018
Rep. Messer, Luke [R-IN-6]* 03/07/2018
Rep. Rokita, Todd [R-IN-4]* 03/07/2018
Rep. Ratcliffe, John [R-TX-4]* 03/07/2018
Rep. Loudermilk, Barry [R-GA-11]* 03/07/2018
Rep. DesJarlais, Scott [R-TN-4]* 03/07/2018
Rep. Kelly, Trent [R-MS-1]* 03/07/2018
Rep. Meadows, Mark [R-NC-11]* 03/07/2018
Rep. Moolenaar, John R. [R-MI-4]* 03/07/2018
Rep. Buck, Ken [R-CO-4]* 03/07/2018
Rep. Webster, Daniel [R-FL-11]* 03/07/2018
Rep. Wagner, Ann [R-MO-2]* 03/07/2018
Rep. Smith, Jason [R-MO-8]* 03/07/2018
Rep. Kelly, Mike [R-PA-3]* 03/07/2018
Rep. Lamborn, Doug [R-CO-5]* 03/07/2018
Rep. Perry, Scott [R-PA-4]* 03/07/2018
Rep. Harris, Andy [R-MD-1]* 03/07/2018
Rep. Latta, Robert E. [R-OH-5]* 03/07/2018
Rep. Budd, Ted [R-NC-13]* 03/07/2018
Rep. Duncan, Jeff [R-SC-3]* 03/07/2018
Rep. Farenthold, Blake [R-TX-27]* 03/07/2018
Rep. Pearce, Stevan [R-NM-2]* 03/07/2018
Rep. Gibbs, Bob [R-OH-7]* 03/07/2018
Rep. Pittenger, Robert [R-NC-9]* 03/07/2018
Rep. Blackburn, Marsha [R-TN-7]* 03/07/2018
Rep. Biggs, Andy [R-AZ-5]* 03/07/2018
Rep. Estes, Ron [R-KS-4]* 03/07/2018
Rep. McClintock, Tom [R-CA-4] 03/09/2018
Rep. Dunn, Neal P. [R-FL-2] 03/09/2018
Rep. Bucshon, Larry [R-IN-8] 03/09/2018
Rep. Marino, Tom [R-PA-10] 03/09/2018
Rep. Bishop, Mike [R-MI-8] 03/09/2018
Rep. Carter, Earl L. “Buddy” [R-GA-1] 03/09/2018
Rep. Brooks, Mo [R-AL-5]

I seriously doubt these Congressmen consulted military families to see if they support this bill. The National Military Family Association (NMFA), the National Association of Federally Impacted Schools (NAFIS) and the Military Officers Association of America have all voiced opposition to the proposal.

I have already called my representatives, because I realize what’s at stake. My son’s future, and the futures of all the kids left behind in underfunded schools. Tell your Congressmen to support the men and women of the U.S. Armed Forces, and #killthebill!

Do you have a child who attends public or private school near a military base? What do you think of this proposal? Comment below.

Disability Advocates Share Resources for Life After High School

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For those with disabilities and their families, leaving high school can be like falling off a cliff. Only 17% of people with disabilities are employed in America today; that’s compared to 65% employment for the rest of Americans. Many people with disabilities never received a regular diploma, or proper preparation for life after high school. Now a group of disability advocates want to pave a better path forward.

“My brother has a disability. Growing up, it was hard watching the struggles he and my family faced. We had to move states to get him the resources he needs. When I left home for college, I kept thinking this would have been great for Scotty. But his school didn’t prepare him. Nobody was teaching him how to advocate for himself. My mom struggled to get him the resources he needed to transition to life after high school,” describes Ricky Price, co-founder of The Next Step Programs.

Read Related Post: A Summer of Inclusion at Camp PALS

Ricky Price (center) at Camp PALS

It was after working at Camp Pals, a summer camp for teens and adults with Down syndrome, that Ricky Price and fellow camp counselor, Josh Fields, agreed something needed to change. These ambitious 20-somethings started The Next Step Programs, a nonprofit that provides resources and workshops geared towards transition. “There’s too few opportunities for these young adults,” says Ricky.

TNS Co-Founders, Josh Fields (left) and Ricky Price

The Next Step Programs (TNS) has created a fantastic online tool for families in search of transition resources. “When students transition out of high school, parents are left to do a lot of digging to find out about resources post-high school. We wanted parents and self-advocates to have a place they could go to find resources with one click. We did the research for you! It includes resources for the states of Michigan and Pennsylvania so far,” Ricky explains.

The resource map includes many transitional services including legal, educational, independent living, transportation, and competitive employment opportunities. You can find the map here. “It’s labor intensive to gather all these resources in one place. We’d like to have the funds to expand to different states, and create a hard copy of the map,” Ricky says.

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

TNS founders have a lot of other ideas for transition resources. With Masters degrees in disability-related services, both Ricky and Josh realize the immense need for more programs after high school, as well as connecting existing programs with people in need. TNS started a video blog series to show case the struggles and triumphs of transitioning youth. “It’s important to share their struggles and successes. We plan to follow up with these self-advocates and their families. We also want to interview family members, teachers, and experts in the field,” Ricky explains.

TNS is also starting a workshop series this spring focusing on the transition from high school to college or competitive employment. “We are inviting speakers to talk about independent living supports, degree vs. certificate track, employment, transportation, and self-advocacy training,” Ricky says.

Ricky believes transitional services are starting too late, and not teaching the right skills for life after high school. “Transition IEP goals should be written by the time a student is 14-years-old. These goals shouldn’t teach specific job skills like how to dust and mop. Anyone can learn those skills later. What’s harder is teaching soft skills like living on your own, advocating for yourself, doing your own finances, finding and keeping a job,” Ricky explains.

Ricky’s brother Scotty did end up going to college, but Ricky says no one prepared him or taught him those all important soft skills. “He didn’t want to use services for people with disabilities at college, because he didn’t want to be defined by his disability. He never advocated for himself. Although he has a good job now, I wish he would have had a better road map for life after high school,” explains Ricky. Now, through TNS, Ricky and Josh are building a better future for others with disabilities one click and workshop at a time.

TNS is having it’s 4th annual Gala to raise funds for expanded programming this summer. You can also donate online here.

Are you having a hard time navigating the transition from high school to post-secondary education or work? Would a non-profit like TNS be helpful in you or your child’s journey? Comment below.

 

Advocate like a Mother

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Tis the season for chocolate and wine and tears. While most mothers take this to mean a cheesy Valentines day celebration with their sweetheart, mothers (and fathers) of children with Down syndrome know what it really means….

It’s IEP season.

That means chocolate and wine is needed to hold back the tears. In the past week I’ve read at least 3 social media posts that started something like this: “My goal for today is to not cry at my child’s IEP meeting…” To you, mama, I say: let the tears flow. Eat the chocolate; pour an extra glass of wine.

“There is no more powerful advocate for children than a parent armed with information and options.” –Rod Paige

We are our child’s best advocate, which is why we cry. Because we actually get it! We understand our child’s true worth, and what’s at stake. And the numbers are abysmal. In the year 2017, ALL but one state reported more than 60% of students with Intellectual Disabilities (ID) spent 50% or less of their day in general education classrooms. Check out the report here (the numbers for inclusion in general education start at page 49). The end result is 80% unemployment for people with ID.

Read Related Post Here: The Immortal Mom: Why I Can Never Die

Yes, you need to arm yourself with information at the IEP table and advocate in a professional manner, but you also need to inject emotion and heart into a meeting that too many schools turn into a check-the-box, fast food version of education. They need to understand that your child is not just another box to be checked; that your child deserves to “Have It Your Way!”

So, what can you do to advocate for your child at their next IEP meeting, while keeping heart?

  1. Bring an advocate: Never, never, never go alone to an Individual Education Plan (IEP) meeting. Bringing someone, anyone with you, gives you the freedom to cry and share why your child deserves more. The advocate provides an objective view of the meeting, and an important counter to school personnel. This person can take notes for you, ask questions that you planned to ask before you started crying, and rehash what happened over a glass of wine post-meeting. Find a COPAA trained advocate here. Your advocate could be a neighbor or good friend too.
  2. Demand more than the fast-food version of the IEP process: My favorite quote of 2017 comes from Chief Justice John Roberts in the Endrew F.  decision: “The IEP is not a form.” Simply put, the IEP is actually a living document. You have the right to change it and ask for more than what your state form requires. Ask a lot of “but why?” questions. Demand answers in writing. Keep reminding your child’s IEP team of the “I” in IEP.
  3. Write it down: Especially if you think you’ll be emotional at an IEP meeting, it’s imperative to have the meeting recorded via video or note form. An advocate can write notes for you. Remember, if your concerns are NOT put on the record, they don’t exist. A verbal concern is lost forever in the IEP abyss. Make sure everything is on record and in your child’s IEP. You can add attachments to your child’s IEP at any time. Often an IEP overwhelmingly becomes the perspective of the school personnel. Interject your concerns in an official way, and leave the tears at the IEP table. Those recorded concerns will make a lasting impact, and creates a paper trail.

What are your concerns going into your child’s next IEP meeting? How do you prepare? Tell me about it below.