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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.

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Students with Intellectual Disabilities Can Use Federal Funds for College Opportunities

With more than 260 College Programs available for students with Intellectual Disabilities (ID), it’s no longer a question of whether the new generation of students with ID can go to college but how to pay for it.

Vineet Narayan recently graduated from high school, and wanted to do dual enrollment at a community college as part of his transition to a 4-year university. Vineet’s transition program staff refused to support this path.

Vineet Narayan graduation from high school

Vineet’s mother, Nithya Narayan explains “The district’s transition program is supposed to support Vineet until age 21, but none of their programs work on academics. He could learned so much navigating a community college, but instead they have him working on functional goals. I fought hard, but the staff won’t change their mindset.”

College programs are expensive. Tuition is often as much or more than tuition for typical college students. This coupled with the fact that most families of children with ID have no savings for their adult child really creates a real barrier to these new college opportunities.

Now the Department of Education issues guidance that these students can use Vocational Rehabilitation (VR) and Individuals with Disabilities Education Act (IDEA) funds to pay for expenses related to dual enrollment, comprehensive transition programs, and other college programs.

Vineet should have been able to use IDEA funds to attend community college as a dually enrolled student, but Stephanie Lee Smith of the National Down Syndrome Congress (NDSC) says the guidance on IDEA funds is less clear. “This is a real step forward and the guidance on VR funds is clear, but we need further clarity on IDEA. The new guidance appears to say it’s allowable to use funds from IDEA, but there would need to be state guidance. The Department of Education states a Free and Appropriate Education (FAPE) is only guaranteed in primary and secondary schools, but I would argue that IDEA’s 2004 regulations leave this type of decision up to the IEP team. Advocating for guidance in all 50 states could be daunting.”

Vocational Rehabilitation (VR) programs are state run, federally funded programs who’s main goal is to give people with disabilities the support they need to get to work. With this goal in mind it seems fitting that VR funds should be used for postsecondary education. Think College reports that “Individuals receiving postsecondary education services from VR do show higher rates of competitive employment and improved employment outcomes including higher earnings and greater number of hours worked per week.” In fact, the employment rate upon completion of college programs for students with Intellectual Disabilities is 90%. That’s compared to an employment rate of less than 20% for people with ID at large.

Stephanie Lee Smith, who’s been busy advocating for this type of guidance since 2005, says the real challenge now is getting the word out. “One of the challenges is going to be how it will be adopted and used at the local level. How will this information get out to the regional offices. Some regional VR offices do a good job, others do not. Attitudinal barriers will need to be brought down so that VR counselors understand students with Intellectual Disabilities could benefit from post-secondary education.”

Vineet is still busy applying for entry into a 4-year university for the fall of 2020. Nithya says after hearing about this new guidance she contacted her local Vocational Rehabilitation program. “Our VR says they will give money towards educational supports with a goal of employment, but the programs funds have been frozen recently. We’ll see!”

Does your loved one with ID use their local Vocational Rehabilitation services? Do they have plans to go to college? What barriers do you face? Share you story below.

 

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When Being “You” is a Form of Activism

You know what’s ice cold these days? The newest trend since goths vs. jocks? Being yourself! The art of self-promotion is palpable; just look on social media. Everyone is selling a version of themselves; the more unique, the more dope. Many people with disabilities also develop and embrace an innate sense of self. My son and many kids and adults I’ve met with an extra chromosome love who they are. They truly are dope! The problem is they’re often not allowed to be themselves and still fit in. The trend doesn’t extend to them.

If they’re even given a chance to be included in a regular classroom or competitive paying job (which is far too few), the onus is always put on the person with the disability to change to fit in. Society often can’t be burdened to do the simplest of accommodations to allow them to show us their gifts. When a person with a disability shows us who they are in the classroom or at work it becomes a form of activism. As if to shout: “LOOK AT ME! This is who I really am. Take it or leave it!” Too often society looks the other way.

Read Related Post: Accommodations Mean Access

Children with disabilities are supposed to be educated alongside their typical peers to the maximum extent possible. Supports for these students should be exhausted before moving to a more segregated setting. It’s federal law in the United States! But it’s not what’s happening for far too many students with disabilities almost a half a century after the Individuals with Disabilities Education Act (IDEA) passed. Unemployment for adults with developmental disabilities stands at 80%! Many adults with ID work in sheltered workshops getting paid well below minimum wage.

In my current state of Washington, only 8% of students with Intellectual Disabilities (ID) are included in the regular classroom for the majority of their day. Washington state ranks amongst the lowest in the nation for educational inclusion, but the numbers in supposedly inclusive minded states aren’t where they should be either. In fact, a study from the American Journal on Intellectual and Developmental Disabilities found that inclusion rates for students with ID are actually declining since the 1990s. Nationwide, only 17% of students with ID are spending more than 80% of their day in general education.

The fact that someone like my son, who has Down syndrome, spends more than 90% of his day with his typical twin in a regular classroom is an anomaly here in Washington state and in many places across this country. Even though the law says it should be the norm. Legally a student should start in regular education before a more restrictive setting is ever discussed.

Read Related Post: 7 Research Studies You Can Use At Your Child’s Next IEP Meeting to Win the Fight for Inclusion

Now I’m taking it a step further. Not only do I want you to include people with Intellectual Disabilities, but I want you to truly accept them for who they are. Most people don’t really get what this means. This is how I know: they’ll say something like “Oh sure, we accept them, but they have to keep up in class.” No, actually they don’t! That’s what the Individual Education Plan (IEP) is for: to give specially designed instruction, accommodations, and modifications so a child can be educated in the least restrictive environment. Not to keep up, but to make meaningful progress in light of their disability.

We know behavior is communication. When a student with a disability struggles in a regular classroom they’re often telling us that they’re not afforded the same right to be themselves as other typical students.

Too often, employers or schools ask: “How do we change this person so they can be included?” How do we turn this question around? Instead, how can we change the environment to include this person?

Universal Design for Learning (UDL) supports the idea that all learners are different, and providing different modes of representation in learning can help reach all students. UDL teaches us that it’s the environment, not the student, that needs to change. Here’s a great video from Understood.org showing how UDL works in a classroom.

Following the heart of IDEA also leads to acceptance of students with disabilities. Really exhausting those supports is an important first step to acceptance. Just because a student needs direct support throughout their day doesn’t mean they’re not benefiting from everything a regular classroom provides. Just because a student with ID doesn’t master all the content, doesn’t mean it wasn’t worth the teacher’s time.

Inclusion shows us that life can be about so much more than just keeping up. It’s about meeting people where they’re at, supporting each other to move forward, and accepting people for who they are.

If parenting a child with an intellectual disability has taught me anything it has taught me this: It’s time we embrace the person and the process, and stop obsessing about the end product. So, thank you to all the “activists” out there who are showing the world who you really are, and asking us to meet you where you’re at.

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This Land was Made for My Son with a Disability, Too

The Fourth of July is a time of reflection of our nation’s past and present. As a mom to a child with a disability and former history teacher, I often marvel at how far our nation has come in one generation as it relate to the human rights of individuals with disabilities.

Surely, when Thomas Jefferson wrote we have the right to “life, liberty and pursuit of happiness” in the Declaration of Independence he wasn’t thinking of people like my son who has Down syndrome. Still, this document and our nation’s constitution has been used as proof that my son deserves a life of choice and self-determination with needed supports.

When I was born in 1982, individuals with Down syndrome had a life expectancy of 25-years-old. Many still lived in neglected and abusive institutions, were denied life saving surgeries, and underwent forced sterilizations as approved by the Supreme Court in 1927.

One generation later, in 2012, when my son was born life expectancy more than doubled to 60-years-old. Many laws contributed to this amazing feat including Medicaid (especially the community and home-based waivers program), the Americans with Disabilities Act (ADA), and Individuals with Disabilities Education Act (IDEA).

Troy (left) with his twin, Hunter

Still, forward progress has often been an evolution, rather than a revolution of inclusion for people with disabilities. At times like now, there seems to even be a back-pedaling of progress. With threats seeming to come from every direction, it’s hard not to lose heart. It’s also hard to know where to focus your energy. You’ve likely heard that advocacy is a marathon, not a sprint. Check out some of the issues facing our community below, and pick up the phone, write an email, or give a speech. Small acts from us all can lead to big change and forward progress.

  1. Inclusion in schools for Students with Intellectual Disabilities: federal reports show that only 15% of students with intellectual disabilities are included in general education for the majority of their day. The Supreme Court of the United States, in the Endrew F. case, demanded a higher expectations for our students with disabilities, but some schools are still segregating them. Join this Facebook group that is teaching parents how to address their local school board to advocate for inclusion in general education (click here).
  2. Achieving a Better Life Experience (ABLE) Act: This law allows people with developmental disabilities to save above the $2,000 a month threshold without jeopardizing their government benefits. Still, disability advocates say more people need to open ABLE accounts or the program will be in jeopardy. That’s why advocates are asking people to urge their Congressmen to pass the ABLE Age Adjustment Act to increase the age of disability onset. Find out more here.
  3. Ending Sub-minimum Wages: Most people with disabilities want to work, but more than 80% are unemployed. Those that do work are often segregated in sheltered workshops, earning pennies on the dollar. The Workforce Innovation Opportunity Act (WIOA) hopes to ensure all people with disabilities earn at least the minimum wage, while creating a systematic approach to ending sheltered workshops. Send a letter to your representative supporting this bill using the National Down Syndrome Congress’ pre-formatted form. Click here.

Troy playing baseball with his typical peers

In a time of growing distrust of government, it’s important to realize that federal policies like the ones above have made a big difference in the lives of the disabled.

It’s important to not become complacent. Let’s fight to continue the progress made by so many.

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Busting the Myths Surrounding ABLE Accounts

Are you still skeptical about opening an ABLE account for your child with Down syndrome? Do you believe that your child’s SSI or Medicaid benefits would be at risk? Are you afraid the government will take the savings if your child passes?

Even though roughly 10 million Americans could benefit from an ABLE account, only 35,000 accounts have been opened since the first program started in 2016.

The viability of the program relies on more people opening accounts and saving, so it’s important to dispel myths surrounding ABLE accounts. So, why aren’t more people taking advantage of this tax-advantage savings accounts? “In a few words: lack of information and skepticism,” says Senior ABLE Advisor Heather Sachs.

When Troy was first born we opened a special needs trust for him, because of our worry the government would take away any savings left in his name. Before the Achieve a Better Life Experience (ABLE) passed, individuals with disabilities could only have $2000 in their name if they wanted to receive needed government supports.

The special needs trust cost us more than $500 dollars to open. Troy can only use the trust upon my husband and I’s death, because it costs so much to manage the account once in use.

In comparison, it cost us nothing to open and maintain an ABLE TN account, and we can use the money right now just a like a checking account. Special Needs Trusts and ABLE accounts are not mutually exclusive though. They have their own separate costs and benefits, but many people are incorrect in their understanding of ABLE accounts.

This month the ABLE National Resource Center is running an ABLE Awareness campaign to educate the public on the benefits of ABLE. Sign up for their weekly webinars here.

Let’s debunk some of the most common myths surrounding ABLE: 

1. Once the ABLE account exceeds $2,000 the account holder loses his or her SSI and Medicaid benefits.

Wrong! For the first time ever, individuals with disabilities can save like anyone else WITHOUT losing needed government supports. This is a civil rights issue, and one the ABLE law did a good job of remedying. I should be able to save for my son with Down syndrome, just like I save for my typical children. Money in an ABLE account is not a countable asset in determining SSI or Medicaid eligibility. ABLE accounts allow you to save up to $100,000 dollars without losing government disability assistance. Even when the account exceeds $100,000 the account holder’s SSI or Medicaid benefits are just suspended, not canceled. The account holder must spend down below the $100,000 threshold for benefits to kick in again. Also, if money in an ABLE account exceeds the $100,000 ceiling, the beneficiary can still receive Medicaid, SSDI, SNAP, Section 8, etc.

2. If the account holder dies, the government takes all the money in the ABLE account.

Not quite! This is the biggest concern of parents I talk to who are still skeptical about opening an ABLE account for their child with a disability. Here’s what you need to know. ALL outstanding disability expenses are paid first before Medicaid can make a claim. That means burial and medical expenses, outstanding loans, etc. must be paid first before the state can even look at the account. State Medicaid agencies MAY make a claim but are not required to do so. Also, many states like Pennsylvania and Oregon are passing legislation to prevented this “clawback” through legislation. Check you state for details, and start advocating to end the Medicaid clawback in your state.

4. Only the account holder can contribute money into the ABLE account: 

Wrong! Anyone can contribute money into the ABLE account. Family and friends can contribute up to $15,000 a year as a tax free gift. To control the account the person without a disability must have legal guardianship or financial power of attorney. 

3. ABLE Accounts are like 529 College Savings Accounts, but my child with Down syndrome isn’t planning on attending post-secondary school so he/she doesn’t need one.

Wrong! Although ABLE accounts are like 529 accounts in that they’re a tax-advantage type savings vehicle, the account holder can spend ABLE money on much more than just post-secondary costs. “The list of eligible expenses is defined very broadly,” explains Sachs. ABLE account money can be spent on anything that improves the life, independence and wellness of the account holder. This means Troy could use his ABLE account money for an iPad to play his favorite Starfall phonics game. An adult beneficiary could buy an iPhone (assistive technology) to call Uber (transportation) to get to ballroom dance lessons (wellness), and their ABLE account would pay for it all. “There’s no preapproval necessary for these purchases, but keep your receipts in case you’re ever audited,” Sachs says. Click here to learn more about how the ABLE account money can be spent.

4. We already opened a trust for our child with a disability, and you can’t have both a trust and ABLE account.

Wrong! An ABLE account is not in competition with a special needs trust. You can have both; we do. They’re just two tools in your toolbox. The biggest difference is a special needs trust is taxable, usually have higher costs to set up and maintain, and you must have a lawyer or trustee manage it. But the government cannot touch any money in a trust, whereas states MAY make a claim on ABLE money once the account holder passes (after all other disability and life-related expenses have been paid).

As you can see, there a lot of advantages to an ABLE account. There’s tax incentives, low cost to start and maintain, and a wide list of eligible expenses.

Yes, your state MAY make a claim on the account if your child passes suddenly, but this may be a reason to use the account differently than say a special needs trust. You may keep a smaller amount of money in the ABLE account, or use it for grandparents or family members to gift to your child.

For more information about ABLE and sign up for a the ABLE National Resource Center’s webinars click here.