3 Tips to Survive Your Child’s Next IEP Meeting

IEP season is upon us! It’s like preparing for Christmas or Hanukkah without any of the joy. Still, the results of an IEP (good or bad) will have a much more lasting impact on your child’s life than any holiday gift they receive. It’s important to get the process right. Here’s some useful tips:

Other than your child, you are the most important person on your child’s IEP team. That’s because you know your child best. Likely, you’ve become an expert on your child’s strengths and weaknesses.

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

If you’re reading this, I know you’ve spent countless hours scouring the Internet for expert advice on inclusion and educational best practices.

Still, an IEP meeting can often feel like an episode of David and Goliath. You playing the part of David.

So, now is the time to get organized. Rally the troops, because this year’s IEP meeting is going to be EPIC…in a good way!

Here’s 3 tips to make your child’s IEP meeting run as smoothly as possible:

Never go alone to an IEP meeting!
- An IEP team meeting can include countless school personnel, often with their own agenda.
- If you can afford it, find an non-attorney special education advocate in your area by searching the Council of Attorney and Advocates directory here. A good advocate can cost you anywhere from $100-$1000, but it may be worth your weight in gold to have someone in your corner who knows the law.
- If you can’t afford an advocate, invite an friend, pastor, neighbor….anyone who is less emotionally invested than you are and who can take good notes.
- Many state Parent Training and Information Centers (PTIs) provide free non-attorney special education advocates. Click here to find your state’s PTI center.

2. Organize all those documents CHRONOLOGICALLY!

As a former teacher, I realize failure to document can come back to bite you in the “you know what.” Keep all of your child’s records – from evaluations to letters home to IEPs to that adorable little Mother’s Day painting he made you this year. But how?
First, go out and buy the BIGGEST 3-ring binder you can find.
MOST IMPORTANT: Organize your documents chronologically! I’ve tried creating categories for my son’s IEP folder, but I soon realized the categories are ENDLESS (IEP, ETR, Behavior, Communications, Resources, etc). Also, some of the documents could really be under more than one category (which category do you choose then?).
My best advice, create a table of contents with the following: date, author, type, significance. Number each document and place them in order of date. Then you can quickly look back at your table of contents to find your child’s “1st grade ETR”.

Read Related Post: Using the Recent Endrew F. Supreme Court Case at Your Child’s Next IEP Meeting

3. Put EVERYTHING in WRITING!

Communication is EVERYTHING! Save it all: emails, letters home, even text messages.
- Make all requests in WRITING! I have so many clients who complain that they asked for a 1:1 aide for their child and the school said “no.” If you ask for the aide in writing your child’s school has to provide Prior Written Notice explaining why they denied your request. Often school’s don’t want to official deny a request in writing. Read about Prior Written Notice here.
- At the end of each email I send to school personnel I always write: “please add this to Troy’s educational record.” Emails can often get lost in the ether, but they can be very powerful if you need to make a case for a change in your child’s IEP later. Make sure you make them a part of your child’s official record.
- The easiest way to save emails if you don’t have a physical copy and don’t want to print it out, is through email files. Most emails (I use Gmail) allow you to create folders.
- I have a folder for Troy in my email, and even have sub-folders (for behavior, IEP, and therapies). Any time I get an email I save it in the appropriate folder. I even email text messages to my email to save.
- This is especially important if, for instance, you keep getting an email about your child’s behavior. Keeping a paper trail (or in this case, an email trail) will be crucial for getting your child the help they need. Most schools require evidence of a continued problem before they’ll shell out money for say a formal behavior assessment.
- If you have a verbal conversation with school staff about your child, go home and document it. It can be as easy as starting a list of conversations with the date in the Notes app on your iPhone. If you document the conversation the day it happens it becomes part of your child’s official record.

Let me know what you think of these 3 tips below. And tell us how you make your child’s IEP meeting as magical and impactful as Christmas morning! Comment below.

November 20, 2018December 24, 2018

Least Dangerous Assumption

If you’re a teacher or parent of a child with an Intellectual or Developmental Disability (IDD) understanding Least Dangerous Assumption theory could be life-altering for yourself and your students and/or children. It’s not a new idea, but it’s still a theory that should be thought of often and practiced ALWAYS.

What is Least Dangerous Assumption?

More than 30 years ago, Special Educator Anne McDonnellan stated that in the “absence of conclusive data, educational decisions ought to be based on assumptions which, if incorrect, will have the least dangerous effect on the likelihood that students will be able to functional independently as adults.” She also argued that educators should assume a student’s “poor performance is due to instructional inadequacies rather than student deficiencies.”

Read Related Post: Creating a Circle of Support

Wow! Even today McDonnellan’s argument totally flips special education around. The problem is not the child, McDonnell argues. The problem is how we instruct that child, and the environmental inadequacies the child faces. The least dangerous assumption is to PRESUME COMPETENCE of all children. Assume they can learn. Assuming they cannot learn leads to segregated settings, missed educational interventions, and ultimately dependence in adulthood.

Read Related Post: Everything is Still Possible

We must always presume competence. Society’s ingrained discrimination of people with disabilities leads us down a very dangerous path. Low expectations and segregation become the norm with this world view. It’s so important that every person is given the opportunity to be included and try participating in typical activities. Too often the a child has to prove they can participate in general education or an inclusive activity outside of school. When we presume incompetence and fail to give the child the support they need to be successful we are the problem, not the child.

You can learn more about Least Dangerous Assumption here.

Why do you think society has yet to fully embrace the Least Dangerous Assumption? How do we change this world view? Comment below.

November 5, 2018November 5, 2018

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

“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 Down syndrome 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: 5 Tips for Including Students with Down Syndrome in a General Education Classroom

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 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’m taking to prepare 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. The information below is credited to the amazing Selene Almazan, special education lawyer who specializes in the least restrictive environment.

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

In the area of IEP quality, time of engagement, and individual supports:

1. In a 1992 quantitative study, Hunt and Farron-Davis found a significant increase in Individualized Education Plan (IEP) quality in measures of age appropriateness, functionality, and generalizations when students were moved from a self-contained classroom to a general education classroom. This was true even when the special educator stayed the same and moved with the child into the least restrictive environment. Experts interpret this to mean that there’s nothing going on within the four walls of a self-contained classroom that provides value and quality when stacked up against general education classroom settings.
  - Citation: Hunt, P., & Farron-Davis, F. (1992). A preliminary investigation of IEP quality and content associated with placement in general education versus special education. Journal of the Association for Persons with Severe Handicapps, 17 (4), 247-253.
2. Two years later, the same researchers looked at engagement of students with severe disabilities within general education. They found that there was an increase in the amount of instruction for functional activities for students with severe disabilities within general education compared to self-contained classrooms. Students in self-contained classrooms were less engaged and more isolated.
  - Citation: Hunt, P., Farron-Davis, F., Beckstead, S., Curtis, D., & Goetz, L. (1994). Evaluating the effects of placement of students with severe disabilities in general education versus special education. Journal of the Association for Persons with Severe Handicaps, 19 (3), 200-214.

3. Similar results were found in a study of a small group of students with severe disabilities. Some of the students were placed in general education and some were in a self-contained classroom. The study found the general education setting provided more instruction time, a comparable about of one-on-one time, addressed content curriculum more, and engaged in peer-modeling more.

Citation: Helmstetter, Curry, Brennan, & Sampson-Saul, (1998). Comparison of general and special education classrooms of students with severe disaitatebilities. Education and Training in Mental Retardation and Developmental Disabilities, 33, 216-227.

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

In the area of non-academic time and individualizing supports:

4. A 2000 quantitative study found 58% of time spent in a self-contained classroom was classified as “non-instructional,” compared to 35% of the time in a general education classroom. The students with severe disabilities in general education classroom were also 13 times more likely than their typical peers to receive direct instruction during whole-class time, and 23 times more likely to receive one-on-one support. This challenges the common argument that students with disabilities cannot receive individualized instruction in a general education setting.

Citation: McDonnell, J., Thorson, N., & McQuivey, C. (2000). Comparison of teh instructional contexts of students with severe disabilities and their peers in general education classes. Journal of the Association for Persons with Severe Handicaps, 25, 54-58.

In the area of student outcomes and impact on typical peers:

5. A 2001 study out of Indiana looked at academic progress for students with disabilities in general education and self-contained classrooms over two years. 47.1% of students with disabilities in general education made progress in math, compared to 34% in self-contained classes. Reading progress was comparable in both settings. Interestingly, the study found typical peers made higher gains in math when students with disability were present. Researchers hypothesized that extra help and supports in these classes created gains for all students.

Citation: Waldron, N., Cole, C., & Majd, M. (2001). The academic progress of students across inclusive and traditional settings: a two year study Indiana inclusion study. Bloomington, IN: Indiana Institute on Disability & Community

6. 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

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 1998 study out of Montana found that inclusion does NOT compromise a typical students academic or social outcome. The Indiana study above shows they actually make more progress because of inclusionary practices.

Citation: McGregor, G., & Vogelsberg, R.T. (1998). Inclusive schooling practices: Pedagogical and Research Foundations. A synthesis of the literature that informs best practices about inclusive schooling. University of Montana, Rural Institute on Disabilities.

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.

October 25, 2018February 19, 2019

How to Vet College Programs for Students with Intellectual Disabilities

Vineet Narayan graduated from high school last spring and during his gap year he’s on the hunt for a college program that fits his needs. Searching for the right college program is daunting for most students, but Vineet’s mom, Nithya Narayan, says sending her son with Down syndrome to college adds a few extra concerns.

Although the college search process has been surprisingly typical in many ways, Narayan says “It did seem surreal to hear from schools and acknowledge the gap between having no access to curriculum and having to audit college classes, which seems incomprehensible. So I attended the State of the Art conference to see if he could really attend these programs without barriers. We want him to have the liberty to choose classes and make a career path, which is what the typical students do. As I was researching, some of these programs have definitive classes that they have to take which is not what we want.”

College programs for students with Intellectual and Developmental Disabilities (IDD) have increased by 73% in the last decade. Currently there’s around 260 programs across the nation. These programs range from fully inclusive community colleges or 4-year university settings with on-campus living, to segregated programs on college campuses. There is much to celebrate with this tremendous growth of post-secondary opportunities for students with IDD. But compared to the 7,000 college programs for typical college students across the nation we’re really still in the infancy of this movement.

Read Related Post: College Scholarships for Students with Down Syndrome

I’ve written recently about the good, the bad, and the ugly of these college programs. Although there is federal regulations for the few programs that receive federal funding (about 25 programs), the vast majority receive no federal or state oversight. It’s up to the college and increasingly parents to self-monitor the efficacy of these programs. So, how can parents and students ensure the program they choose lives up to their expectations?

“Parents and students don’t know what they want until they don’t get what they want. Students with Intellectual Disabilities don’t often go to college night like their typical peers. They go to transition fairs instead. There needs to be a whole mindset change starting in high school,” explains Think College Co-Director, Meg Grigal.

Think College is a great place to start your search. Parents and students can search for programs using an interactive map, and check out the organization’s new “How To Guide on Conducting a College Search.” Grigal says parents should share this with your child’s high school transition team to better prepare for that next step.

But don’t stop there! Jennifer Luebke and her 19-year-old son, Antonio, had to renew his college search after the program he was attending failed to keep promises of at least a 50% inclusive course load (As of February 2019, the matter has been resolved to the satisfaction of all parties). Antonio left the program after a year, and now Jennifer has many more questions for the next college Antonio attends. Even though your student may be looking for a different type of college experience, her questions could help guide your inquiry and get you thinking about what questions to ask.

Read Related Post: Bethel University Fails to Keep Promises of Inclusive Education for Students with Intellectual Disabilities

“We developed key questions that will hopefully reveal answers that go beyond the self-reported information on Think College and the college’s marketing materials,” explains Luebke. Parents from the Facebook Group “Families Think College” also chimed in with other questions that are added to Luebke’s questioning below:

“Academic Inclusion: What courses (if any) are inclusive? Provide a list of catalog courses that are available for students with IDD to take where the coursework is modified and where they receive in-class and out-of-class academic support. Do you have courses where typically-abled students are also present, but their role is different from a student with IDD (e.g. as a mentor, co-enrolled as a lab to help students with disabilities, etc.)?
Residential Inclusion: Do you have a policy that prevents a student with IDD from being roommates with a typically-abled student?
Social Inclusion: Tell us how students with IDD are intentionally and regularly included in campus social activities?
Job Training and Internships: How will you leverage his strengths to provide job training to him? What might a few conversation starters be to help him identify a good job fit? What internship opportunities do you have that might be a good fit for him considering his strengths? What percentage of students are employed after leaving the program?
Parental Involvement: Do you require a student with a disability to be their own guardian? How do you determine what level of communication is appropriate with parents and how do you calibrate it?
Metrics: What metrics do you track and how often do you track them to assess the effectiveness of your program and areas for improvement? With whom do you share your findings? How do you measure and assess each student’s learning and progress?
Membership & Belonging: Are students in your program considered enrolled students in the university? Do they have full alumni benefits when the complete the certificate program? Do you have a separately published student handbook and policies apart from the general student handbook (with some areas where additional support is provided where needed).
Philosophy of Inclusion: What is your program’s definition of inclusion or what is your program’s inclusion statement that guides the program?
Qualifications: What are the program director’s educational background, work experience, and specific qualifications to run this program? Are the professors who teach the courses that students with IDD take qualified university professors? What training have the professors received in universal design? What training do students on campus receive about ability diversity?
Please provide us a list of all students and alumni (and their parents and families) that we may contact to ask further questions about your program.”

Nithya Narayan says a “parent comments section” could provide invaluable real-life reviews of how a program actually operates. She says good programs are out there, if you know how to look. “When typical kids go away they shape their life by being an adult and making decisions on their own for their life, and we are very glad that opportunity is available for Vineet.”

How’s your child’s college search going? What is your child looking for in a program and have they found it? What questions have you asked? Share in the comments below.

October 2, 2018October 2, 2018

From Awareness to Advocacy at the Buddy Walk

Our local self-advocates proved how important advocacy is at our 15th Annual Miami Valley Down Syndrome Association (MVDSA) Buddy Walk.

Nothing About Us, Without Us!

Often good-intentioned parents and loved ones create fundraising events like the Buddy Walk to spread awareness about Down syndrome, but don’t include actual people with Down syndrome in leadership or advocacy roles. This mind set has got to change

Down Syndrome Affiliates in Actions gave me the idea of having our local self-advocates lead the Buddy Walk with a advocacy table. This idea started six months ago with a Self-Advocate Communications Workshop that you can read about here and here. At the workshop, teens and adults with Down syndrome learned the skills they need to become self-advocates and lead our Buddy Walk.

Category: Advocacy