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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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Why I hate the “I” in IEP

I am white.

I have a master’s degree.

I am now firmly upper-middle class.

I’m lucky enough to be able to stay home and raise my kids.

I spend at least a small percentage of each day reading the latest research or news on disability rights, advocacy, and inclusion. I blog about it here.

I spend a lot of money on countless conferences and intensive advocacy trainings.

I’ve used all of this privilege to leverage a decent education for my son with Down syndrome. Unlike 83% of his peers with Intellectual Disabilities, he is fully included in general education with proper supports. I’m the self-proclaimed CEO of his Individualized Education Plan (IEP), and I would make CEO pay if someone paid out for solid IEPs.

Read Related Post: Clearing the Way for Systems Change in 2020

You’d think with all this privilege that my son would be set. That he would be guaranteed an appropriate education in the Least Restrictive Environment (LRE) with proper supports for the rest of his educational career.

But that’s the funny thing about the Individuals with Disabilities Education Act (IDEA); the federal law that opened the school house doors for people like my son who used to be institutionalized, pushed away, othered. This tremendously revolutionary law is not.

Read Related Post: 7 New Research Studies to Win the Fight for Inclusion

Yes, it gives parents the right to symbolically “bear arms:” we have supposed equity at the IEP table and due process protections. But then there’s that pesky “I” in IEP. If advocating for my son and other families has taught me anything it’s this: A lot of us are holding up our pitchforks and screaming, but we’re doing it ALL BY OURSELVES in a vacuum. Unlike the 2nd Amendment, IDEA doesn’t allow us to create the IEP version of a “well-formed militia.” It’s you against a cadre of school officials who’ve been entrenched in the institutionalized promotion of ability-based segregation that goes against all best practices and research.

Some parents buy into this system. Either because of innocent cultural deference or because of intentional ableism. I really like to believe most are in the former category. These parents believe they shouldn’t questioned professionals who are tasked with protecting and educating their child under the law. These types of parents may also have few of the privileges that help me understand and navigate the complicated special education system. Either way, both groups of parents don’t question IEP team staff . The ableist parents truly believe their child is better off segregated in a self-contained class or special school, even though all the research says they aren’t. The vast majority of parents are never really giving an option to start their child in the least restrictive environment with appropriate supports.

The segregated class becomes the best choice, because it’s the only choice.

Parents are given significant power under IDEA to be an equal decision maker for their child. The key phrase is “their child.” The emphasis on the individual at first glance seems powerful. Who doesn’t want a customized document for their child?

Just the other day a parent posted on my Facebook page: “It totally depends on the ‘individual’ needs of the student. As it should be.” There’s that word again: individual. Schools use the “I” in IEP to segregate: your child will receive a more “individualized” education in this “special” classroom is the common mantra. The problem is individualization undermines our community’s broader push for including ALL students with disabilities NO MATTER WHAT! The “I” in IEP is being used to divide and conquer our community, and segregate our children.

No student! I mean ABSOLUTELY NO STUDENT has individual needs that require a segregated setting! Separate is NEVER equal, and framing self-contained classes and special schools as “individualized” so somehow better does such a disservice to an entire class of humans.

Furthermore, it’s that pesky “I” again that prevents us from banning together. Enforcement of IDEA is handled on an “individualized” basis. If you have the privilege to take your school to court, you’re going alone. And too many due process decisions related to IDEA end right at that individual child, without a broader social change for ALL students with disabilities.

Our family makes up a tiny percentage of privileged, systems-changers. And still, I have no idea if my son will be appropriately educated next year in his least restrictive environment with supports. Think about that for a moment. Not even the most privileged amongst us are guaranteed what the law requires.

My district may get a new special education director, or he may get a general education teacher who doesn’t want him in class, or we may have to move. Countless factors outside my son’s solid IEP can drive us towards the brink of segregation. And the “I” in IEP will be there to push us over the edge.

What do you think is our biggest barrier to inclusion? I could write an entire article on the continuum of placement as a barrier…and I will. But tell me what you think below.

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Clearing the Way for Systems Change in 2020

11-year-old Salome is a female of color with a disability. English is a second language for her immigrant parents, and her extended family lives far away. Many students like Salome and their families are disenfranchised by the special education process, and don’t feel like they can adequately advocate for inclusion and proper supports under the law.

Salome (right) with her mother and father

“I’m always mindful of our privileges and challenges,” says Salome’s mother, Catalina Angel. “In many ways we are like any family with dreams of a good future and in may ways we struggle in a place where we constantly have to demonstrate that we have worth.”

Read Related Post: 5 Ways You Know You’ve Become Your Child’s Best Advocate

Salome’s journey to full inclusion was a rocky one that included self-contained classes and her mother finally realizing she would have to learn the system and change it if she wanted her daughter to get an appropriate education.

One mom’s desire for inclusion for her own daughter turns into a systematic change for all children with disabilities in her district.

​”We first needed to learn about how the education system works in this state, because my husband and I were educated in different countries. He is Cuban and I am Colombian. We had to learn a whole new system in a different language. We face multiple layers of challenges and we are still learning how to navigate everything for our family and others,” Catalina explains.

Catalina’s realization is an important one for our community: most of us start advocating for our own child. But if we stop there, and don’t seek systems change for ALL people with disabilities our advocacy work is a dead end. It’s also important to point out the intersectionality of Salome’s experience and how that creates barriers to advocating for systematic change.

What would you like to see change in 2020?

May be it’s an end to sub-minimum wages in your state. It might be a federal increase in wages for Medicaid care providers. Possibly an organ transplant anti-discrimination bill passed in your state. Or maybe you’d like your local school districts to actually follow the continuum of placement by starting in the least restrictive environment (general education with supports) every school year. You may even want to take it a huge step farther and end the continuum of placement all together…honestly, the Individuals with Disabilities Education Act (IDEA) promotes segregation of students with disabilities in “special” classes which research doesn’t back up as best practices.

Read Related Post: When Being “You” Is a Form of Activism

If any or all of these systems changes seem too out of reach to tackle in 2020, remember that all it takes is one person with passion to start a big change.

What are the ingredients for systems change?

The Arc of King County’s Inclusion Academy shared some invaluable tips to creating change. Whether it’s micro-scale (creating an inclusive environment in your school district) or large scale (passing a bill), these 7 elements will help get you there:

  1. Clarity: ​You need clarity around action. You need to be able to answer: What, why, how, when and where first for the problem you see, then the action to resolve it.
    • For Salome, barriers to inclusion started with the district special education coordinator’s determination that her neighborhood school “was not equipped to support her.” Catalina says the district even proposed sending her to two separate buildings during her school day to receive academic and related services like OT, PT, and Speech. Our status has a direct impact in SalomĂ©’s opportunities, choices, and development. People have low expectations of Latinos who are not working in the big companies, even if we have higher education. I have a lot of stories of discrimination and barriers to inclusion.”
  2. Data: To convince people to do something differently, you need research on your side. Any potential allies will ask for it. People who haven’t bought into an idea will challenge you.
    • In Salome’s case, this is an easy find. Federal law and all of the research on Least Restrictive Environment shows inclusion in general education creates the best outcomes for all students. (See 7 New Research Studies to Win the Fight for Inclusion). Salome’s father also used his background in engineering to track her lack of progress in self-contained to make a case for inclusion.
  3. Stories: Unfortunately, data alone is often not enough to make systems change. Many change-makers rely on stories to personalize what’s at stake. Who does this change affect? What do the players have to win or lose?
    • Catalina says sharing Salome’s experience in a self-contained class convinced others to work for systematic change throughout the district. ​”She spent two years in a self-contained class. The general education teachers never considered her as their student. She was followed by adults everywhere. She expressed her frustration with anger and desperation so she was labeled as an ‘aggressive and violent’ student. It was a constant battle and still it’s hard for her to articulate in words.”
  4. Allies: You need friends who share your vision and goals. You do not have to create a formal coalition, but allies will want direction. They will want to know what they should do. They will ask for talking points and specific ways to help.
    • This key element is what really changed Catalina’s advocacy from an individual fight for her own child to a systematic change for all children with disabilities in her district. “I got highly involved with the special education PTSA where I met wonderful parents who taught and encouraged us. I talked with the Washington Office of Education Ombusd (OEO) for advice and clarification of the law around Less Restrictive Environment (LRE) and requested to tour schools based on other parents’ experiences and some teachers’ we know,” Catalina explains.
  5. Champions: You need someone who can influence the system or organization that you want to change. This can include civic leaders, other organizations, professionals in the field, well-respected community members. It can also include unexpected voices – like students. 
    • In 2017, Catalina got her champion: a change of leadership in her district’s Student Services department. “The SpEd PTSA, the new Director of Student Services and a small number of administrators agree to become a Special Education Advisory Council last year with the intention to build a collaborative relationship and to strengthen the communication between the District and the community in benefit of the students. The district has agreed to provide training for parents, guardians and caregivers on IEP, behavior supports and other topics of interest. The parent group is creating dialogs to inform the district on what is working and what needs attention.” Learn more about how to form a Special Education Advisory Council (SEAC) in your district here.
  6. Media: The news media and social media can be effective in explaining research, telling stories, and validating your cause. Be sure to first identify your audience; that will help you identify appropriate media partners.
  7. Celebration and Maintenance: Catalina says “SalomĂ© is now included in all the areas. She receives direct instruction from multiple sources, general and special education teachers know her goals and have high expectations. She knows who to go when she needs support and sometimes peers step up to do it too. She knows she belongs to the whole student body.” Celebrate every small and big step towards systems change, and remember to remain vigilante. Thank people often and publicly.

Salome and her family are unlikely change-makers. The intersectionality of race, language, and disability often works against students seeking a free and appropriate education in the least restrictive environment. Most system changers are white, affluent, well educated families with connections. But Salome’s family shows that passion and hard work can lead to systems change:

“My advice to immigrant, and second and third generation of immigrant families are to meet other parents. Learn the law and stay connected. Advocacy is key for the future of our children. School advocacy is just the beginning. The need to advocate for individuals with disabilities to live a full life is never ending. Please get back to your community once you’ve learned how to advocate. There will be parents with younger children just like us who are starting their journey and they need more than individual advocacy efforts- they need systems change!” Catalina says.

What systems change do you want to or have you already started working on? Share your tips and concerns 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?