Teen with Down Syndrome Wins Inclusion Case in Federal Court

Breaking news!!!! I’m so happy to announce the Sixth Circuit Court of Appeals affirmed a lower court’s decision that 15-year-old Luka’s school district violated the teen’s rights to a free and appropriate education in his least restrictive environment. In a lightning fast decision, the 6th Circuit Court also ruled that Hamilton County Department of Education in Tennessee must reimburse Luka’s family for the cost of private school education.

Luka’s mom, Deborah Duncan, said today’s decision validates years of fighting for Luka’s right to be a fully included member of his school community. “Hopefully this will prevent other students from facing segregation, empower families to insist on real educational services and measurable outcomes for their child with a disability, and make it impossible for schools to continue discriminatory practices against students with disabilities,” Deborah says of the decision.

Read Related Post Here: Ninth Circuit Court to Decide if Student with Down Syndrome Can Stay in General Education Classroom

Hamilton County School District in Tennessee wanted to place Luka for half his day in a self-contained classroom in a school outside of his neighborhood. “The segregated class follows no state curriculum or standards. There’s no homework or grades. No accountability,” Luka’s mother Deborah Duncan explains. Knowing Luka would not receive a Free and Appropriate Education in the Least Restrictive Environment if he stayed, Deborah moved her son to a Montessori school where he continues to attend today.

Deborah with her son, Luka

After paying private school tuition, $75,000 dollars in legal fees, and a five year battle with the school district the family eventually prevailed at the district court level in Tennessee. The District Court ruled that a self-contained class is more restrictive than necessary, but that the family would not receive reimbursement for the private Montessori School.

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

Then Hamilton County Schools filed an appeal to the Sixth Circuit Court of Federal Appeals. “They have no ground to land on, but it allows them to delay reimbursement of our legal fees. They just look vindictive and have spent a lot of taxpayer money just to violate the law. We finally decided to cross appeal for reimbursement of the Montessori school private tuition,” Deborah explains.

Now the Sixth Circuit has ruled that the district must pay the family for all the years of private tuition they incurred, and upheld the lower court’s decision that Luka’s rights to FAPE in LRE were in fact violated. Today’s decision will impact students with disabilities in the states of Tennessee, Kentucky, Ohio, and Michigan.

Read the full text of the decision here.

15-year-old Luka

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.

Letter to My Son’s New School

A parent is often a child’s best advocate. We usually know our child’s history and potential for learning better than anyone else. But too often, when it comes to a child’s Individualized Education Plan, parent concerns are not inserted into the conversation or official record.

The Individuals with Disabilities Education Act (IDEA) and the recent Supreme Court Case, Endrew F., stresses the importance of parent participation at the IEP table. Parents are supposed to be equal partners of the IEP team, but often the IEP document is skewed to the school district’s point of view.

Read Related Post: Endrew F. In Action at the IEP Table

To ensure your point of view is injected and carried out, include a Parental Statement every year. Attached this letter and a bulleted list of concerns to your child’s IEP. You can even have them copy and paste your input into the online IEP form. There’s no reason why they can’t. Read the one I sent to my child’s new school, in a new state. Your letter could talk about the progress or lack of progress your child has made in and out of school since his/her last IEP.

Feel free to use my format, and change it to your child’s situation.

Parental Statement for Troy

To Whom it May Concern:

Our 5-year-old son, Troy, is a congenial, kind, and bright young boy. We’re nervous about him starting kindergarten, and we expect he will be too. Troy has Down syndrome, and although our expectations for him are the same as his typical twin brother, Hunter, we fear that well-meaning community members may have little to no expectations for him. We expect that Troy will be fully included in the academic and social aspects of k-12 education with proper supports. Our long-term goal is to have Troy graduate high school with a regular diploma, prepared for post-secondary education or integrated, competitive employment. With the national graduating rate for students with disabilities around 50%, and unemployment at 80% for people with disabilities, this may seem like an impossible goal to reach. But we understand that the law supports placement in general education first with supports, and all the research proves it works. We’re betting on our son, because we know he’s capable of contributing meaningfully to his community.

My husband is an emergency medicine doctor with the United States Air Force, and this is the third state Troy has lived in in his short life. I stay at home, as well as advocate for other families in the special education process. The move across country is sure to be tough on Troy. He has a hard time with change. He thrives on routine and clear expectations. We’ll try to ease the transition with social stories, and keeping our daily routines. We expect that kindergarten transition will be hard as well, but Troy loves school. If proper transition supports are set up and carried out with fidelity, we know that he will do well.

Troy has been in an inclusive educational setting since right before his 3rd birthday, and has received early intervention since birth. He and his typical twin brother have shared the same teacher for three years in an Ohio public preschool. The class was fully inclusive, but Troy often had the most significant disability in the preschool class each year. Even so, he did very well in this setting, and exceeded teachers’ academic and social expectations. Speech and OT were pushed into the preschool class, and Troy left Ohio well prepared for kindergarten. He knows how to write his first name (albeit messily), use scissors, color, identify all his letters, over 20 sight word recognition, one-to-one correspondence from 1-10, patterning, and much more. Even more important, he understands the routines and expectations of a classroom, and how to socialize with other students. To gain these skills, Troy needed explicit teaching and specific support in the general education classroom.

Although Troy has no medical problems, he has been diagnosed with Childhood Apraxia of Speech. Using push-in speech services, as well as private speech therapy, Troy has grown by leaps and bounds when it comes to functional communication. Troy is saying many more novel phrases without prompting. I can understand most of what Troy says, but strangers often have a hard time understanding him unless the conversation has context or visual clues. Troy does have many common phrases (like “Yes, I do” or “I not do that again”) that are very intelligible. Often practicing functional phrases, with visual cues, that will be used often in the classroom is the best way to improve Troy’s intelligibility.

Positive behavior supports work best for Troy. As you know, behavior is communication, and Troy is always trying to communicate something. He loves attention, and will work hard to gain your attention even if it’s negative in nature. Troy doesn’t have a mean bone in his body, so most of his problem behaviors are attention-seeking in nature. The few behavior issues Troy had in preschool were remedied with continual visual cues or giving him positive attention. Some issues included eloping to his favorite therapists office. Teachers solved this by putting a “stop” sign at the classroom door, and pushing in speech therapy instead of pulling it out. Troy loves circle time, and during free play he would often want to take down the pictures of his classmates, and use the teacher’s pointer to look at them. This issue was solved by creating his own book of classmates’ pictures and giving him his own pointer. Troy loves to feel helpful, and be a leader in class. Troy also needed to explicitly be taught classroom play-based skills, and will likely need help with this in a new classroom.

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

We’d love for Troy to have an experienced, yet open-minded kindergarten teacher. Someone who has high expectations for our son, and empathy for our situation. I taught middle school and high school students before I stayed home with my twin boys, so I understand the challenges of meeting the needs of every child. Still, we know the general education teacher is the content expert, and the best teacher to serve our child, with support from special education teachers or paraprofessionals. We know his teachers will need a lot of support. I hope to advocate for Troy’s teachers, and volunteer weekly.

We have high expectations for our son and the school he attends. We expect that his IEP will be standards based, and include all the accommodations and services he needs to make progress in light of his disability. We want IEP goals that are appropriately ambitious, and ensure that he is exposed to the same content as his twin brother. I will lean on school personnel as the experts in content and specially designed instruction, as I hope they will lean on me as the best advocate for Troy. I’m excited to work with Troy’s teachers to successfully include him in general education with supports. I know this will not only have a positive impact on Troy, but also the other students in the class who will one day be teachers and employers who will remember Troy and hopefully work to change the current dismal outcomes for people with disabilities.

We consider this letter part of Troy’s educational record, and the IEP document incomplete without this letter attached. I appreciate your time and consideration! I look forward to working with you!

Thank you,

Courtney

Play Nice, Mean Business

Navigating special education often feels like walking a tight rope. If you’re doing it right, you’re likely in a constant battle between preserving parent-school staff relationship and getting what your child with a disability needs. This can feel like an impossible task.

We all know that a perfect Individualized Education Plan (IEP) means nothing if there’s not buy-in from school staff. I would argue that, equally important to a solid IEP, is building strong relationships with your child’s teachers, administrators, and therapists. But how do you do this when you feel forced to challenge their system or mindset to get what your child needs?

Read Related Post: 4 Resources to Help Teachers Include Students with Down Syndrome in General Education

One way is through the power of negotiation. Negotiation may seem like a weird way to build relationships, but stick with me for a moment.

By definition, the word “negotiation” means: a discussion aimed at reaching an agreement. That’s just what Individualized Education Plan meetings are for. As your child’s best advocate, it’s your job to get the best deal for your child; while the school wants to provide an appropriate education that fits their system. Parents need to politely challenge a system that doesn’t put the student’s needs first. We must remind the IEP team of the “I” in IEP. We have to do all of this with grace and respect.

I recently read “Negotiation Genius,” and although it’s for business negotiations the book’s tips work for parent-negotiators too. According to the book’s authors a good negotiator will identify opportunities for a better deal when others see no room for discussion, discover the truth when others may want to conceal it, defuse threats and ultimatums, overcome resistance and “sell” proposals,” and create trusting relationships.

The Individuals with Disabilities Education Act (IDEA) gives parents equal power to use research and evidence to make request that benefit their child. The Family Educational Rights and Privacy Act (FERPA) ensures parents have access to every document that has their child’s name on it (this includes emails, notes between teachers, test booklets, etc). Section 504 and the Americans with Disabilities Act (ADA) both provide broad protections against discrimination of students with disabilities. All of these laws give parents the right to be power brokers in their child’s educational career. It’s up to the parent to overcome resistance and create trusting relationships. The law can only take you so far; it’s relationships that will ensure your child is successful at the end of the day.

So, what about bringing food to IEP meetings, or talking to teachers or administrators outside the IEP meeting about your child, or showering the IEP team with gifts? Some parent advocates say the IEP process should be purely business, and those things don’t belong in a business deal. I fall on the other side of the fence. Most good business deals do in fact include personal connection and gifts. Like it or not, it’s easier to catch flies with honey than vinegar.

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

This line of thought only goes so far though. It’s likely that at some point you’ll encounter difficult personalities during your child’s special education career. Whether it’s the power-hungry gatekeeper who says no to all your requests or the passive-agressive IEP team member who use sarcasm, stalling, conveniently forgetting, or habitual criticism of your ideas to stonewall the IEP process. Sometimes even being too friendly can lead to a conflict of interest. You may feel like you can’t provide constructive criticism if the staff person has become your friend.

Striking a balance between being nice and getting what your child needs takes thought and practice, but it’s worth your consideration. The bottom line is school district win most due process hearings. Even if a family does win a due process case against a district, in many ways the family still loses. Imagine having to send your child back to a school that fought against you in court. Relationships will surely be damaged. That doesn’t mean you shouldn’t file against a school that violates your child’s right to a free and appropriate education, but it does mean thinking about building relationships from the beginning and using the power of negotiation to help you avoid a no-win situation.

How do you balance parent-school staff relationships with getting the best deal for your child? Share your experiences, good and bad, below.

 

 

Accommodations Mean Access

Before I understood the process of the Individualized Education Plan (IEP), I assumed IEP goals were the end all, be all. In fact, my own son’s preschool IEP includes solid IEP goals, but leaves much to be desired for specific accommodations. An IEP must include any peer-reviewed research techniques that will allow the child to meet IEP goals and make progress in the general education curriculum.

Today I’m going to tackle accommodations as a way to access the general education curriculum and make progress on IEP goals. It’s important to note the difference between modifications and accommodations. Modifications change what a child is taught or is expected to learn, whereas the accommodations only changes how the student learns the required curriculum.

Read Related Post: Building the Perfect IEP

For my son with Down syndrome, who is entering kindergarten, I’ve decided not to include any modifications to his IEP yet. I want to give him a chance to learn the same material as his typical kindergarten peers, and meet the same high expectations. I do plan to advocate for modifications when appropriate, and Nicole Eredic’s new book below will help guide me in the future I’m sure.

Read Related Post: 5 Tips for Including Students with Down Syndrome in a General Education Classroom

The following are a list of accommodations I’m advocating for in my son’s kindergarten IEP. This doesn’t include the specially designed instruction or staff training I’m advocating for, which are equally important areas of the IEP. Please feel free to use any that may be helpful for your own child.

  1. Troy will use a visual/picture schedule to assist him to be more independent in following directions and routines and play appropriately with peers across educational settings.
  2. Troy will use assistive technology programs to assist in reaching speech, OT, behavior, and academic goals.
  3. Troy will have access to low-tech writing tools like a slant board, small and short writing utensils, pencil grip, letter and number tiles.
  4. Use manipulatives to make abstract objects concrete.
  5. Troy will have extended time to complete tasks.
  6. Teacher will use wait time (up to 10-20 seconds) to allow Troy to process a question and give and an answer.
  7. A visual timer will be used for transitions.
  8. Troy will have an extra set of classroom textbooks or workbooks available at home.
  9. Troy will have access to audio recordings of books.
  10. Troy will use vocabulary cards that includes the definition and a picture representation of the word.
  11. Troy will have a week’s worth of homework available at the beginning of the week.
  12. Troy will have available extra practice worksheets for at home use to reinforce the curriculum.
  13. Troy will have directions broken down into single steps and repeated.
  14. Troy will have frequent redirection, visual cues, and prompting for inattention.
  15. Troy will have a safe, temporary “escape” area within the general education classroom to take a short break.
  16. 14- point font will be used for all assignments, with colors in high contrast
  17. Troy will use adaptive seating (without restraints), as well as either a copy of the book being read or a sensory object during whole instruction time. Troy may have a hard time seeing and understanding a book being read at the front of class. An extra copy of the book will help with visual perception and attention problems.
  18. Troy will use letter and number and picture symbols or tiles to assist in answering questions and as an alternative to writing.
  19. Troy will have peer buddies to help him reach IEP and curriculum goals.
  20. Troy will use alternative means to demonstrate what he knows (for example: assistive technology, letter tiles, pointing to answers rather than verbally saying or writing the answer, recording his answer instead of standing in front of class to speak).
  21. Consultation between the OT, staff, family and any private therapists regarding support of Troy’s fine motor needs
  22. Parent will be given monthly updates on Troy’s progress towards IEP goals and objectives.
  23. Visual aid to support safety in the classroom (for example, a stop sign on the door to indicate that Troy’s not allowed permission to leave).
  24. Regular bathroom breaks. Troy often will not tell you if he needs to go, so it must be scheduled throughout the day.
  25. Troy will receive positive, corrective feedback on his speech sound pattern attempts as well as visual and verbal cues by all staff and across school environments to promote use of expressive language and increase intelligibility.
  26. Use of a visual positive behavior chart created by teacher and parents to allow for ongoing, daily communication of expectations and performance during Troy’s school day.
  27. Troy will use peer modeling, visual cues, and repetition of directions for classes like art, music, and P.E., as well as during more unstructured times like lunch, sitting in assemblies, and recess.
  28. Troy will have access to a classroom paraprofessional that will promote independence and safety.
  29. Accommodations for Lockdown and Evacuation Drills: Troy will have a specially assigned adult to monitor him during all evacuations or emergency drills. Troy will have access to a safe location close to his classroom for evacuations and emergency drills, as running a far distance may be prohibitive. He will have access to a sensory object to calm him down during tense situations.

I’d love to hear your ideas for accommodations in younger grades for students with disabilities. Please share your ideas below!

 

Building the Perfect IEP

My husband says I can relax sometimes; that our son didn’t come with an instruction manual. I know he’s right, but this is his educational career we’re talking about. Thirteen plus years of glory or failure (well, probably something more in between, but you get the picture). And it all starts with one very long, very dry legal document: the IEP.

In most ways I’m laid back. I grew up on the beach. I come from a long line of beach bums. I can procrastinate and cut loose with the best of them. But when it comes to my son with Down syndrome’s Individual Education Plan I turn into a complete Type-A Tiger Mom (I even annoy me). As we speak I’m working on a year-long course in special education advocacy, all to ensure my son gets the education he needs and hopefully help other families along the way. This is all while preparing to move across country and find the right school for my soon-to-be kindergarteners (yes, I consume a lot of wine and chocolate).

Read Related Post: Letter to My Son’s New School

I realize there’s probably no “perfect” IEP. After all, my son’s educational success depends on a lot more than just a great IEP. Still, I’m determine to give it my best shot. Why not shoot for the stars? Below is my attempt at building the perfect IEP. Feel free to use what works for your child, and please comment below with other tips that I can add to my repertoire.

  1. Don’t be afraid of evaluations: Schools must do an initial evaluation for eligibility in special education, a reevaluation every three years, and you can request up to one reevaluation every year. I was so scared of evaluations and what they would mean for my son. I’m still skeptical of certain types of evaluations. In fact, I refused an IQ and achievement test as part of my son’s reevaluation process. But if done correctly, evaluations should drive solid IEP goals and services. A good evaluation will tell you what your child does well, and where he needs help. Without a wide-range of good evaluations, IEP goals and services may be too hard or too easy. Make sure your child’s evaluation report includes norm-referenced and criterion based evaluations, as well as observations from yourself and his teachers. The evaluations should cover all areas of suspected disability. My son received evaluations in speech, OT, social-emotional, and adaptive skills. The school’s own evaluation report allowed me to request further testing for assistive technology and a positive behavior intervention plan. All of this combined helps the IEP team build a solid IEP. If the school’s evaluation is not sufficient request an Independent Educational Evaluation (IEE).
  2. Know what you want and use evidence to get it: I started writing out a list of IEP ideas a couple months before our meeting. I scoured social media, called friends, and Googled like crazy to find out what other students have in their IEP under Goals, Specially Designed Instruction, Supplementary Aids and Services, Accommodations, Personnel Training. Once I got a list of ideas I matched them to Troy’s needs, and then researched the validity of specific programs in reading, writing, and math. Here are some evidence-based websites to start your search:
    • What Works Clearinghouse Funded by the U.S. Department of Education, Find What Works provides the research behind the best and worst literacy, math, behavior, disability intervention programs out there.
    • Evidence for Essa This is a brand new site produced by John Hopkins University School of Education, which helps educators and parents find out if the programs they use correlate with Every Student Succeeds Act (ESSA) standards.
    • Best Evidence Encyclopedia Funded by the U.S. Department of Education, this free website gives educators and researchers fair and useful information about the strength of the evidence supporting a variety of programs available for students in grades K-12.
    • Power Up What Works This website offers educators resources, strategies, and practical tips to personalize your instruction with technology to meet the needs of struggling students.
  3. Know how the IEP process works: Have you reviewed your parent rights? It’s amazing what you can learn by reading and rereading that little booklet your IEP team is obligated to give you (NEVER throw it out!). The Council of Parent Attorneys and Advocates has a great IEP checklist to help you prepare and nail your child’s next IEP meeting. Find it here. Get to know the format of your child’s IEP. Each state has a different IEP template, but here is a model form that explains each section. Know that your state’s IEP template is just that. You can add more information, even if it’s not an option on their drop down menu. Most school personnel don’t know this and just want to check boxes and move on. Remind them of Supreme Court Chief Justice Robert’s quote from the Endrew F. case: “The IEP is not a form.” It’s a living document, that’s individualized and changes. Don’t let them limit your child to a predetermined box.
  4. Ask Why and Why Not: You can know next to nothing about the IEP process, and still advocate for your child by asking questions. Many parents assume the school is doing what’s best for their child, and are afraid to ask why or why not. Don’t be afraid to be “that” parent. Your child deserves an appropriate education, individualized to their needs. The IEP process is set up to protect your child’s rights. The only way you’ll find out if the school is working in the interest of your child vs. school’s pocketbook is by asking questions.
  5. Put it in Writing: Here’s something many school personnel won’t explain to you: Your signature on the IEP document (except for the initial IEP) means less than you think. Often school’s will have parents sign for attendance purposes, but that signature can also be used later to argue that you consented to the IEP’s contents. It’s imperative that you put your thoughts to paper and make it official. If your opinion is not on record, it doesn’t exist. The IEP document is already skewed to the school district’s point of view. They’re they one’s writing it, and the one-sided point of view is hard to miss. Read both related posts in this blog post (here and here), to find out how you can insert your concerns and goals into the official record.

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

I would love to hear your ideas for IEP goals, Specially Designed Instruction, Accommodations, Modifications, and more. Please comment below with what’s worked for you and your child.