Inclusion Evolution

Empowering Individuals with Down Syndrome at School and Work

How to Advocate Now for Extended School Year Services

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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.

Inclusion Must Start in Preschool

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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.

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

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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.

Busting the Myths Surrounding ABLE Accounts

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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.

Federal Appeals Court to Decide if Student with Down Syndrome Can Stay in General Education Classroom

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If you are a parent or teacher of a child with Down syndrome, you’ll want to follow the proceedings of a Ninth Circuit case that may change how and where school districts place students with intellectual disabilities. You can watch the proceedings LIVE, Thursday April 11th here.

The case revolves around a 2nd grade Arizona boy with Down syndrome whose parents refused to send him to a self-contained classroom at a different school, because they argue he was making progress at his homeschool in general education. Starting in kindergarten, the student attended his neighborhood school in a regular classroom with a paraprofessional, and was pulled out 110 minutes for “intensive instruction” in reading, math and writing.

Related: 5 Tips for Including Students with Down Syndrome in the General Education Classroom

“Student was demonstrating progress on his IEP goals, including the majority of the goals that were implemented by the resource teacher (academic/social- behavior goals). Additionally, the student’s resource teacher admitted that his communication skills greatly improved from two-word phrases, which were limited to things he knew about, such as about his mom, dad, or sister, or naming things that he knew, to three to four-word phrases. The impact on his typical peers and teachers was described by his kindergarten teacher as ‘amazing’,” according to the plaintiff’s open brief (parent’s attorney filed).

The Gilbert Unified School District has 30 days after the plaintiff’s brief to file their own, but the following link gives you a more detail description of the district’s possible argument. Click here.

Ninth Circuit Court of Appeals

Despite his progress, the Gilbert Unified School District in Arizona decided just a few months into his kindergarten year that the boy should have 20 more minutes of “intensive instruction.” This time in a self-contained classroom at another school. The school district said the new school would be better for the student, and provide him with “more services at his level with peers in a small environment that could have been better for him.” This subjective opinion was the only evidence they used to propose a change in the boy’s IEP.

The parents argued that it amounted to a change of placement without the proper evaluation of his progress under his current IEP, but the district argued it was just a change in location. Although the Special Education Director testified the model of teaching was different at the new school, where the students would be in a self-contained class 100% of the day using a replacement curriculum.

Sound familiar? It’s likely, if you have a school-aged child with Down syndrome, your child or someone you know has fought a similar battle. After 30 years of research and federal law to back up inclusion with proper supports, parents are still fighting for their child to be included in kindergarten of all places. And the battle often gets more difficult as students progress through school.

But Endrew vs. Douglas County has give parents an opportunity to demand more for our children. The U.S. Supreme Court ruled that schools must provide special education that enable students with even the most significant cognitive disabilities to meet “challenging” and “appropriately ambitious” goals. For these students, progress may be measured against “alternate academic achievement standards” designed to promote further education, work, and independence.

Related: Realizing the Promise of the Endrew Supreme Court Case

The Ninth Circuit Court of Appeals must now decide if the school district made a change in placement and threatened the student’s access to a Free and Appropriate Education in the Least Restrictive Environment as the parents argue, or if it was simply a change in location as the school district contends.

The National Down Syndrome Congress and National Down Syndrome Society have written amicus briefs in support of the Arizona boy, stating the Supreme Court’s Decision in Endrew announced a “Markedly More Demanding” standard for educating students with disabilities, reflecting the IDEA’s high expectation for students. The organizations’ amicus brief also describes the research that proves “students with disabilities benefit from being included in regular classrooms with non-disabled peers.” You can read both briefs here and here.

Fortunately, the Individuals with Disabilities Education Act (IDEA) allows the Arizona boy to stay in his current placement while the court proceedings continue. He’s now in a regular 2nd grade classroom at his homeschool, and his parents say he continues to make progress.

The map below shows the states that will be impacted by the Ninth Circuit of Appeals decision. If you live in a different district the court decision doesn’t have to be followed, but could be used as a possible argument by parents or a school district in similar due process hearings.

The parents and school district can still appeal to the U.S. Supreme Court if they are unhappy with the Ninth Circuit’s decision. I’ll keep you posted on the court case as it unfolds.

You can read about the family in a local Gilbert, Arizona news story here.
You can also read a more recent blog post about the Arizona boy’s mom who has fought for the last 2-years to ensure he remains at his neighborhood school. Click here.

Have you or someone you know had to fight a similar battle for inclusion? Are you frustrated that we’re still fighting this fight more than 30 years after the Individuals with Disabilities Education Act (IDEA) was passed? Tell me about it below.