Tag: education

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“I Have A Dream…”

“I have a dream. It’s a dream deeply rooted in the American dream…”-Martin Luther King

I have a dream one day our sons and daughters with disabilities will be valued as equal members of their community. I have a dream teachers and principals will set high expectations for our children, realizing the value of inclusion with their typical peers.

I have a dream those non-disabled peers will one day become employers and community leaders who provide adults with intellectual and developmental disabilities (I/DD) the opportunities they deserve to fulfill their true potential. That those typical peers will become caregivers, researchers, therapists, and medical professionals who look at people with disabilities, not as a problem to be fixed or eliminated, but as a beautiful expression of humanity to be shared with the world.

Rev. Dr. Martin Luther King Jr. speaking. (Photo by Julian Wasser//Time Life Pictures/Getty Images)

On Monday, January 18, 2021, we celebrate Martin Luther King’s birthday and are reminded of how interlinked the disability community’s struggle is with the African American community. Without downplaying the abhorrent past of slavery, there’s still a lot of connections to be made. Both movements are struggles for basic human rights: freedom, equality, and justice.

Read Related Post Here: Advocates Urge Congress to Increase Funding for Down Syndrome Research

The Civil Rights Act of 1964 woke up parents of children with disabilities. The public and their representatives in Congress began to understand how segregation and unequal educational opportunities were the anti-thesis to the American dream. Before the 1970s, many children with disabilities were not given the opportunity to attend school at all. As Congress was formulating the Individuals with Disabilities Education Act (IDEA) of 1975, there were 36 pending court cases over the rights of students with disabilities.

More than 30 years after the civil rights movements began, great progress has been made for both black Americans and people with disabilities. The most abusive and neglectful institutions have closed their doors. Courts have expanded their interpretation of the 14th Amendment’s “equal protection clause” to include minorities and those with disabilities. Segregation has legally ended for both groups (including the Americans with Disabilities Act (ADA), Rehabilitation Act–including section 504, and IDEA for people with disabilities).

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

But we know, even though both groups have made great gains legally, they still face prejudice and exclusion. Only 16.35% of students with I/DD are included in a regular education classroom with supports for most of their school day. Black students are overrepresented in special education and are more likely to be identified as having an intellectual disability than their white peers. The intersectionality between race and disability is ever apparent.

The Supreme Court recently ruled in Endrew F. that schools must provide a “more meaningful benefit” to students with disabilities, but some school districts and national organizations are interpreting this to mean students with the most significant disabilities must be segregated to earn this benefit. (Read more about this here).

In this highly partisan time it often seems like one step forward and one step back. For example, last year the Department of Justice scrapped ADA guidance that promotes integrated work for people with disabilities. With unemployment for people with I/DD at 75%, this is a step backwards. We need more guidance, not less. (Read more about the rescinded ADA guidance here). Fortunately, the U.S. House of Representatives recently passed the Raise the Wage Act, which will phase out sub-minimum wages. Click here to email your Senator to support this bill.

Let’s make the year 2021 about fully realizing the rights and humanity of people with disabilities of every race. There’s so much more we can do for and alongside our brothers and sisters with disabilities.

Progress will continue! It will take tireless action from self-advocates and allies. When our government and institutions waver in indecision about full inclusion for our loved ones, we must forge forward. So what can you do this Martin Luther King Day to advocate for someone with Down syndrome?

Call to Action

  1. Advocate: learn about your student with a disabilities rights and how to advocate at the IEP table by signing up for a FREE webinar here, read online resources or order an advocacy book here, joining the Council of Parent Attorney’s and Advocates here, or the National Down Syndrome Advocacy Coalition (NDAC) here.
  2. Think College: make it your child’s long-term IEP goal to go to college. There’s more than 260 college options for students with I/DD. Check it out here.
  3. Donate: give to your local Down syndrome affiliate, or to a specific cause. Global Down Syndrome Foundation has been raising money this year to create updated, evidence-based medical guidelines for adults with Down syndrome. Click here to find out more.
  4. Legislate: support national legislation to end organ transplant discrimination of people with disabilities. You can read about the state legislation I helped advocate for in Ohio here. Read about the federal bill here.

How do you feel about the state of disability rights? What do we need to do right now to continue moving forward? Comment below.

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How to Advocate Now for Extended School Year Services

Extended School Year (ESY) is an under-used and misunderstood part of special education. I’ve struggled to get my own son with Down syndrome meaningful ESY services. I was told that ESY was just for students who have fallen behind. At the time, my son was in his first year of preschool and the school district argued that he hadn’t yet fallen behind. After reading the law myself I realized my son was eligible for ESY services in order to received a Free and Appropriate Education (FAPE). I learned that I didn’t have to wait for my son to regress to get ESY services.

Extended School Year is any special education or related service provided to a student with a disability outside of the regular school year. The service must be tailored to the child’s Individual Education Plan (IEP) and at no cost to the parent. Summer school instantly comes to mind when we think of ESY, but don’t limit yourself to this idea alone. It can be ANY time school is not in session (before or after school, and winter or spring break included). ESY services can also be for a particular related service like speech, OT, or PT. It can go beyond academics and must be customized for your child. For instance, any social-emotional, functional, or behavior needs your child may have. Schools can conduct ESY services themselves or pay for your child to receive the services from a private provider.

Just remember this key question: Is ESY services needed to ensure your child receives a Free and Appropriate Education?

Read Related Post Here: Extended School Year: A Necessary Part of inclusion?

In my son’s case I argued that he was at a pivotal moment in emerging speech skills. The district had initially argued that ESY was only for regression and recoupment. I found that my state’s ESY eligibility policy also included maintaining skill level or work on emerging skills.

It’s important to start gathering data now to advocate for ESY. You don’t want to wait until the end of the school year to ask for ESY for your child. The school should be collecting data during and after winter break, spring break, after school, etc. The more specific the data you and the school gather the more likely you can successfully make your case for ESY for your child. You can use IEP progress reports, test scores, evaluations, behavior charts, pre and post tests, and school work before and after breaks.

Advocacy Tips to get ESY: 

  1. Make sure you look for your state requirements for ESY: The federal regulations give states discretion as to how to approach ESY. Services can vary from state to state, but must comply with the federal basic guidelines that you read above. For example, states cannot limit the type, amount or duration of ESY. ESY must also be customized for the student. A quick google search will help you find these regulations. I usually type in “Washington State Special Education Regulations” into google, and when I get into the document I scroll down to the table of contents and look for Extended School Year.
  2. Watch out for the “Regression and Recoupment” limit: Regression and Recoupment looks at how much information the student will lose over break and how long it will take them to relearn the information. Most states look at more than just regression and recoupment. Courts have said states CAN use only regression and recoupment to determine ESY, but they don’t have to limit their eligibility to just this determination. In my son’s case I argued that he was at a pivotal moment in emerging speech skills. The district had initially argued that ESY was only for regression and recoupment. I found that my state’s law included emerging skills, and was successful in getting his ESY by using this factor.
  3. Using other factors to advocate for ESY: Some states have expanded what factors can make a student eligible for ESY. Some of these factors can include working on emerging skills, the degree of impairment, the child’s rate of progress, critical point of instruction where the school must continue provide services so the student doesn’t fall behind. Interfering behaviors that may prevent a student from receiving FAPE during the school year can also be a factor. Also, special circumstances like Least Restrictive Environment (LRE) concerns. This is a big one in the Down syndrome community. For example, a state may decide that a student must be included in a summer school environment so the student can remain in the least restrictive environment during the break and work with typical peers.
  4. Use Case Law to make your case: Courts have interpreted ESY differently across the country. But some often cited cases include Cordrey v. Eukert (1990), which found that ESY is required to prevent serious skill loss. This case has also limited eligibility for ESY. This case reminds us that you really need to have specific data to get ESY for your child. Kenton County School Board v. Hunt (6th Circuit 2004) the regression must be more than normal regression that all students see over break, and will take longer to recoup than typical students. M.M. v. School District of Greenville County (4th Circuit 2002) asks if the child’s progress made during the school year will be significantly jeopardized if he doesn’t receive ESY.

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

We recently moved to a new state and my son is now in kindergarten. At our first IEP meeting I asked for the district’s ESY policy. His IEP automatically included a “no” check mark under the question “does this child require ESY services?” I specifically had to ask for a Prior Written Notice (PWN) stating that although he is not eligible for ESY yet, that the school would begin taking data to determine eligibility.

It may be up to you to initiate the ESY eligibility process. The federal law doesn’t give a timeline as to when ESY has to be considered; another reason to check your state regulations. Some districts are not going to broadcast that ESY is a viable option to ensure your child receives FAPE, and the quality of those ESY services will have to be reserved for a whole separate blog post.

Has your child received ESY services? What did you have to do to get him or her services? What type of services did he/she receive and was it worth it? Comment below.

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Inclusion Must Start in Preschool

My twin sons attended the same Ohio public preschool class. My son with Down syndrome went for free and received important supports and services like Speech, OT, and PT. The other twin served as a tuition-paying typical peer in a class that was 50% students with developmental disabilities and 50% typical learners. They both benefited greatly from this inclusive model in early childhood, and I believe it will set the trajectory for inclusion over my sons’ life.

Inclusion in early childhood education is supported by all the research, and has a strong legal foundation. The Individuals with Disabilities Education Act (IDEA) requires preschools to educated students with disabilities in general education alongside their typical peers to the maximum extent possible. However, “too many preschool children with disabilities are only offered the option of receiving special education services in settings separate from their peers without disabilities” (USDHHS & USDOE, 2015, p. 2).

Read Related Post: Everything I Need to Know About Inclusion I Learned in Preschool

I learned how lucky my twins were once we moved from Ohio to Washington state. As they entered kindergarten in one of the few area elementary schools that practiced inclusion, I realized almost every public preschool in our county was segregated. If I had wondered at why so few Washington schools really practiced inclusion in k-12, I now had my answer. Inclusion starts in preschool and Washington state, by and large, doesn’t practice inclusion in preschool.

School districts may argue that parents can take their child with a developmental disability to a private preschool with typical peers and still receive itinerant services (like SLP, OT, and PT), but I wonder how many parents of preschoolers realize that’s an option. Often it’s not an option, because there are too few private preschools and the public school forces you to work around their schedule for itinerant services. It also begs the question of whether or not the school is violating the Free and Appropriate Education clause of IDEA if parents are paying for private preschool tuition. This option also fails to explain why districts are not providing a full continuum of placement in a public school setting per IDEA– from general education with supports to self-contained classrooms.

Read Related Post: 7 Research Studies To Help you Win the Fight for Inclusion

More than 40 years of research proves that inclusion, especially in early childhood, provides the best outcomes for all students. Here’s just a few of the benefits of inclusive preschools:

Children with Disabilities:

  • Can make significant developmental and learning progress in inclusive settings (Grisham-Brown, Pretti-Frontczak, Hawkins, & Winchell, 2009).
  • Experience greater cognitive and communication development than children with disabilities in separate settings (Green, Terry, & Gallagher, 2014; Nahmias, Kase, & Mandell, 2014; Rafferty, Piscitelli, & Boettcher, 2003).
  • Are more socially competent than peers in separate settings. They have more social interactions and a larger network of friends (Katz & Mirenda, 2002; Justice, Logan, Lin, & Kaderavek, 2014).

Children without Disabilities:

  • Can show positive developmental, social, and attitudinal outcomes in inclusive settings (Diamond & Huang, 2005).
  • Are capable of demonstrating greater compassion and empathy, and develop a better understanding of human diversity (Odom, et al., 2004).
  • Benefit from the learning and developmental supports provided by teachers skilled in meeting the needs of individual students (Odom, Buysse, & Soukakou, 2011).

Families:

  • Typically view early childhood inclusion positively (Barton & Smith, 2014).
  • Desire friendships between children with special needs and peers who are typically- developing (Strain, 2014).
  • Enjoy greater connections with other families and community resources and increased participation in their community (Delaware Health and Human Services, 2013).

Teachers and Other Early Childhood Practitioners:

  • Partner with colleagues who bring new perspectives and skills into the classroom and demonstrate new instructional techniques (Louisiana Department of Education, 2012).
  • Hold higher expectations for children with disabilities (Baglieri & Shapiro, 2012).
  • Differentiate and consider each student’s instructional level, learning preferences and interests (Odom et al., 2011; Tomlinson, 2000).

Communities

  • Understand that inclusion is not just a disability issue, but that all children and families have a right to participate in and be supported in their schools and community (Wolery & Odom, 2000).

School districts who don’t provide an inclusive preschool option in the public school setting are breaking the law, plain and simple. Districts must provide a full continuum of placement from full inclusion in general education with supports to self-contained classrooms or private settings. That’s why I’m meeting with my state representative and the state head of developmental disabilities to advocate for systematic change in Washington state. Even though preschool no longer directly impacts my sons, I’m convinced systematic change in preschool inclusion will make a difference in k-12 and the entire lifespan.

Does your preschooler learn alongside their typical peers? How as been your experience with developmental preschool? Tell me your experience below.

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Finding Inclusion as a Military Child with a Disability

Tis the season to PCS! Your husband is on TDY, so it’s up to you and one power of attorney to secure the movers, sell the house, organize all 18,000 pounds of stuff you plan to move, and sell that couch that won’t fit in your new house in a new state. You can’t see out the minivan because 3 kids, 2 dogs, and all your personal items must make it across country to your moms for the next two months before you find permanent digs at your new duty station.

Military families are extremely resilient. We bloom where we’re planted. We often make fast friends, throw ourselves into new careers or hobbies, play tourist in our new town, while leaving it better than when we arrived.

Military life also presents real stressors and challenges, especially for families with children with disabilities. The Exceptional Family Member Program (EFMP), a.k.a. the PCS gatekeeper, throws in a whole new wrench into the works. Orders often center completely around the military child with a disability, rather than the active duty member. You can’t go to your dream duty station, Germany, because the services are supposedly inadequate for your child. You have to say goodbye to that excellent Speech Pathologist who did PROMPT, and the gap in service while moving could mean a real gap in your child’s communications skills. You heard from another military wife that the schools in the neighborhood you want to live in don’t even follow the law, much less do inclusion.

How can a military family advocate for full inclusion for their child with a significant disability when they’re dealing with so many other moving parts? How does a military child maintain a consistently inclusive educational career when they move every 2 to 4 years?

These are two very difficult questions that I’m not sure I can tackle in one post or even have a complete answer to. My hope is that I can post a few tips that works for my son with Down syndrome, and other military families will chime in with what’s worked for them. I’d love to do a follow-up post with other family’s experiences. Here it goes!

3 Tips to Finding Inclusion As a Military Child with a Disability:

  1. Secure a solid IEP before you PCS:
    • Use those military orders to your advantage. Dangling the orders in the face of your child’s current IEP team if needed. Tell them you’re moving so writing in a full time paraprofessional, daily communication with parents, and modified homework given to the student a week before it’s due into the accommodations section of the IEP should be no big deal. Sometimes this is all an IEP team needs to hear to make some real effective changes to the IEP.
    • The Individuals with Disabilities Education Act (IDEA) requires the new school district you move to to provide a comparable IEP for at least 30 days. This gives you time to make your case to keep the current IEP or improve upon it. The new IEP team must also give you a Prior Written Notice (PWN) explaining WHY they won’t follow the IEP from out of state. Many schools don’t want to make a denial of comparable services in writing, so make sure you ask for the PWN.
  2. Stalk Social Media Groups at your new duty station:
    • Social media opens up a whole new world for families of children with disabilities. There’s a closed group for everything, and could be a great starting point to find an inclusive school.
    • WARNING: some parents’ idea of inclusion may not be in line with your idea of inclusion. I had to learn this the hard way when my son started preschool at our duty station in Ohio. Although the public preschool included 50% of students without IEPs, starting in kindergarten kids were segregated. Luckily, we PCSed before I had to fight for inclusion.
    • Be specific on social media: ask what percentage of time their child spends in general education. You’re looking for at least 80% or more. Ask if proper supports are given, and if the school actually follows through with their child’s IEP.
  3. Get Serious with a Freedom of Information Request:
    • Did you know you can find out how many restraints or seclusion cases a district had in a year? Or how many due process cases a district had and the outcome? If the district had any Civil Rights Complaints made against them. All of this is public information, so once you’ve chosen one or two schools get down to business with a freedom of information request.
    • A request through the district or state office of education (special education office) can reveal so much about the school you’re hoping to choose. Anything from state complaints to individual employee complaints. Go to the state’s Parent Training and Information Center to find out how to make the request for public records in your new state.
    • Side note: this is completely different than looking at school rankings on line (think “Great Schools” and other such sites). Often the traditional rankings tell you nothing about how the district does special education. In fact, a very high rated school in Ohio was notorious for segregating kids with IEPs. So beware!

Lastly, reach out to a local special education advocate to get their take on districts that are following the law and including kids with disabilities in general education. The Council of Parent Attorneys and Advocates has a directory of advocates by state. Advocates often are filing state complaints and civil rights complaints all the time, so they will know which school districts to stay away from.

I called a local advocate before we planned to PCS to Washington state, and I’m still friends with her today. My son is also 93% included in general education with appropriate supports in a state that is ranked 3rd lowest in the nation for inclusion. Doing your homework pays off!

What tips do you have for military families PCSing with a child with a disability? How did you find an inclusive school? What do you wish you would have done differently?

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7 NEW Research Studies to Help You Win the Fight for Inclusion

–One of my most popular posts included 7 evidence-based research studies that prove the benefits of inclusion for students with and without disabilities. Still, I had a few readers comment that the research studies I cited were too old to be impactful. I was completely irked by these comments, because no one would ever say research from the 1990s showing the benefits of desegregation on black and white students is not still impactful and true today. Still, I have come across so many new studies that show the benefits of inclusion, that I thought I would update my original post. In fact, as you’ll read below there are absolutely NO research studies that show an academic advantage for students with intellectual disabilities in a segregated setting. I hope you’ll share these newer research studies with your child’s IEP team or other potential non-believers. –

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“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 with an Individualized Education Plan (IEP) 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: My Original Post with 7 Evidence Based Research Study that Prove Inclusion Works

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 in the Least Restrictive Environment 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 completed 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.

So, without further ado, below are 7 NEW quantitative research studies that show the benefits of including students with disabilities in a general education classroom:

  1. A 2013, quantitive study of more than 1,300 students between the ages of 6 and 9 years old within 180 school districts found that access matters. The study found a strong relationship between the amount of time spent in general education and achievement in math and reading for students with disabilities.
    • Citation: Cosier, M., Causton-Theoharis, J., & Theoharis, G. (2013). Does Access Matter? Time in General Education and Achievement for Students With Disabilities. Remedial and Special Education, 34(6), 323–332. https://doi.org/10.1177/0741932513485448

2. A 2010, synthesis of research studies shows the academic effects that peer tutoring has on students with disabilities (regardless of disability type). The literature overwhelmingly reveals that peer tutoring has a positive effect on the academic outcome of students with disabilities in grades 6 through 12.

  • Citation: Okilwa, Nathern S. A.; Shelby, Liz, (2010). The Effects of Peer Tutoring on Academic Performance of Students with Disabilities in Grades 6 through 12: A Synthesis of the Literature. Remedial and Special Education, v31 n6 p450-463 Nov-Dec 2010

Read Related Post Here: So you survived IEP season? 3 steps to get organized NOW for the next one

3. A 2012, comparative study followed 34 students with Intellectual Disabilities (ID) fully included in general education with supports with a control group of 34 students with ID in special schools. Included children made slightly more progress in literacy skills than children attending special schools. The researchers concluded that inclusive education is an appropriate educational placement for students with ID who require extensive supports in school.

4. 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

5. A 2017, study found that 41.7% of student with learning disabilities made progress in math in general education classes compared to 34% in traditional special education settings, without the presence of nondisabled peers.

  • Citation: Sharp, N. (2017). Inclusion in the early childhood classroom: What should this look like? (Master’s thesis, Northwestern College, Orange City, IA). Retrieved from http://nwcommons.nwciowa.edu/education_masters/32/

6. A 2011, study finds that there’s nothing “special” about the four walls of a special education classroom. The research suggest that the purported rationale for self-contained special education in the literature–issues of community, distraction-free environments, specialized curriculum/instruction, and behavioral supports–were not present in the six observed self-contained settings. Implications for school leaders are discussed and the rationales for the utilization of self-contained classrooms are strongly questioned.

  • Citation: Does Self-Contained Special Education Deliver on Its Promises? A Critical Inquiry into Research and Practice. Causton-Theoharis, Julie; Theoharis, George; Orsati, Fernanda; Cosier, MeghanJournal of Special Education Leadership, v24 n2 p61-78 Sep 2011.

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 2013, study found that inclusion does NOT compromise a typical students academic or social outcome. No significant difference was found in the progress of the low-, average-, or high-achieving pupils from classrooms with or without inclusion.

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.