This is what special education reform looks like

I am a former special education student at the New York City department of education. My disability was "specific learning disability" on my IEP. Yet I was in a self contained classroom FILL TIME from kindergarten until 10th grade. In NYC they never had "part time self-contained" classroom. You were either in a self-contained classroom full time, or in a general education classroom full time. This was the case for many years. My elementary school had 550 students average, and there were 5 teachers in each grade. Only one teacher in each grade was a special education teacher. If you were placed with one teacher you were in the class full time or not at all. Heck my elementary school did not even offer co-teaching classes. So you can imagine what happened when a student's IEP was checked "yes" to eligibility for special class services.

In 2014 they changed things. New regulations required schools to offer flexible or part time programming, and stated that any student in a full time self contained classroom must be considered for part time programming first. Network, cluster and central teams will regularly review patterns of referrals for students to ensure that all recommendations are legitimately in the best interest of students and that the recommended program is the least restrictive environment appropriate for each student.  If patterns of recommended programs in a particular school suggest inappropriate recommendations that do not seem in the best interest of students, central teams will conduct a more intensive audit of student IEPs. For recommendations that are not in the best interest of students, regular progressive disciplinary measures for school leaders and IEP teams will apply. This is how it should be and these regulations should be all over the country.

My friend started high school at 16. He is now 19 and has to take summer school classes. I met this kid when he was 16. He was in a district 75 schools and I questioned in my mind why he was in a district 75 school as we regularly attended a classroom style group and I saw no issues. Next year he was then placed in an inclusion program at a nearby high school. He started taking general education classes there. I spoke to him about this and he said he wished he started high school earlier. He is now 19 and has to take summer school classes just to catch up. All because the DOE started him late.  He didn't need to start late. He isn't cognitively disabled and has no behavior issues. Even if he did need a specialized school, if he is not intellectually disabled he should be given the same opportunity to earn a diploma like everyone else, but he wasn't. This is totally unfair to him.

When I started 9th grade they did a triannual evaluation. The school psychologist had me write paragraphs, solve problems, etc. then they wrote an evaluation paper and said my needs cannot be met in a general education classroom. I wonder how they came to that conclusion when they never put me in a general education classroom. They only said my needs cannot be met in a general education classroom. They never explained how my needs cannot be met in a general education classroom. Even if they did no one checked the reasoning. So that was an opportunity to violate least restrictive environment.

There still needs to be reform. Around the country, schools do not provide non-verbal autistic children with access to the general education curriculum. For example teachers may teach the name of a body part and ask the student "Where is your ______?" or "What is______?" and if the student cannot answer it is assumed they do not have the cognitive ability to understand the name of the body part. Thus, they end up working on naming that one body part for many months, or even years. Imagine how frustrating is it to the student to work on the same thing repeatedly just because they cannot show that they know?

Hopefully we will fight to make changes to the special education system nationwide. No child should be discriminated in the school system.

Autism acceptance: Re-examining how we write IEPs

Neurodiversity is the idea that there is nothing wrong with the way a child learns, plays, learns, interacts and perceives the world. You would think by now, with the autism acceptance movement reaching society, Sesame Street creating an autistic character, IEPs would embody the same ideas of neurodiversity. Unfortunately they do not. Here is an excerpt from Rhema Russell's recent evaluation.

"Rhema continues to present with significant vulnerabilities in her capacity to appropriately engage with peers and independently navigate the social milieu...

At present, Rhema has significant difficulty with peer interactions, reciprocal exchanges and eye contact and presents as self-directed in social settings."

Who is Rhema Russell? She is a 13 year old nonverbal autistic girl. Throughout her life, her mother has blogged about her on rhemashope.wordpress.com Rhema was often aggressive and self-injurious. Every time she was tested, she “has the expressive and receptive language of a 12 month old”. When Rhema was 11, she went to Texas to learn RPM, a technique where a person can communicate by pointing to letters. RPM is not the controversial facilitated communication because it does not involve physically guiding the person's hands. Soma Mukhopadhyay prompted Rhema to answer questions in math, history, and science. When asked to think of any words that rhyme, Rhema consistently spelled out rhyming words. During break Rhema wanted to get into a lock door and swipe markers, and scratched her hand in the process.When Soma assumed she scratched Rhema’s hand, Rhema spelled “It was my fault”. Her mom previously assumed she wasn't aware of her actions. Rhema had a math test where she added and subtracted 3 digit numbers. Rhema answered every question correctly.

Finding the Lock – Part 2
Finding the Lock – Part 3

Through letter board, Rhema spelled she wanted to be a scientist, complained about her “motor skills” (which is her body not cooperating with her brain), spelled that people with autism feel more love, wishes she was able to speak, thought Martin Luther King “was a man of God who let the people of the world see Jesus in him” and even gave a speech in a college classroom to prospective special education teachers.

Recently Rhema had a conversation with her friend. Rhema was typing and answering questions on her ipad, such as "Syd, what is your favorite thing to do on weekends" "I love to have playdates with you and sleep in" "I like that you are so kind and loving and you see the real me" "I want to know how I can pray for you". Yet the evaluation said "Rhema continues to present with significant vulnerabilities in her capacity to appropriately engage with peers" and "Rhema has significant difficulty with peer interactions, reciprocal exchanges and eye contact".

This reminds be of a sample IEP written by the New York City Department of Education for a hypothetical student Thomas Green.

"Thomas is following the alternate curriculum." This means he is not being taught the grade level work his peers are being taught. Carly Fleischmann, Ido Kedar, Emma Zucher-Long, Tito Mukhopadhyay and Rhema Russell have all taught us that severely autistic kids should be learning the same things their general education peers are learning.

"Thomas will make eye contact only when he is told “Look at me” or “Look at the .......”. He will sustain it for 2-3 seconds." Who cares? An autistic child, or any child for that matter, should not be forced to make eye contact. There is nothing wrong with Thomas not making eye contact.

"He repeats certain words and phrases numerous times, beyond the point when they are meaningful to activity or situation." It's called echolalia. It's how autistic people process information.

"He is currently learning to add single digit numbers up to 18." When I was in 3rd grade, I learned to write 3 digit numbers, by 3 digit numbers, by 3 digit numbers by 3 digit numbers, subtraction, multiplication and division.

"Thomas can rote count to 100 by 1s, 2s, 5s, and 10s." This is written in the same IEP. Thomas should be learning multiplication.

See how Thomas's differences are written in a way that make it seem like something is wrong with him. Sesame Street created a new autistic muppet Julia. What if we wrote that "Julia has difficulty maintaining appropriate peer interactions" just because she repeats "play, play, play" or "Julia works best in a small group setting" just because we've only seen her interact with Elmo, Abby and Big Bird? Yet Sesame Street managed to present her in a way that makes her seem like nothing is wrong with her.

if you are ever talking about a student's disability, always involve the student in the conversation

In 8th grade my regular teacher was absent and we had a substitute who was a general education teacher. Within earshot of me and my classmates, my para said to her colleagues, "this is not for them", that a general education teacher is not for us. We needed a special education teacher. She never included us in the conversation, or more importantly, ask us how we felt about having a general education teacher as a sub before speaking up. Just because we didn't respond to her immediately doesn't mean we're OK with her speaking about us like that. If you still justify this because my para felt we didn't get the support mandated in our IEPs, please remember we did not choose to be in special ed. Our teachers and parents made these decisions behind our backs.

"Nothing about us, without us" means any conversation involving people with disabilities, should involve and consult people with disabilities. A conversation about a student's special education is no exception. And we know it's rude to talk about people who are present without involving them in the conversation.

Yet teachers, paraprofessionals, counselors, occupational therapists, speech and language pathologists and even parents do it all it all the time.

This is not the 1st time someone spoke about me as if I wasn't present. In 5th grade when I couldn't go on a trip due to not doing homework, there was no special ed classes I could go to. Not once did they involve me in the conversation.

But I would end up guilty of this behavior myself.

This happened before 8th grade. My middle school, although considered a "general education school", offered 12:1:4 classes. These student have "severe and multiple disabilities with limited language, academic and independent functioning." These students were doing kindergarten to 2nd grade work. At one point we were in the auditorium when this class sat in the row just in front of us. My classmate asked them multiplication problems which they could or could not answer, and then asked my para about them. My para said "they all have something wrong with them".

I never thought anything of it, that my para said these students have something wrong with them in front of them. For one I myself thought since these students have medical conditions and are not on the same level as us in academics, there was something wrong with them. And I also thought they wouldn't understand what was said about that.

What is interesting is that people, professionals and student teachers probably thought the same about us, that there was something wrong us. If someone said about my class "they all have something wrong with them" or "they are there because they have disabilities", I would feel insulted. Yet I was perpetuating the same attitude.

So teachers, if you are ever talking about a student's disability, always involve the student in the conversation. Create opportunities talk about the student's disability when the student is present. Always ask. You should ask the non verbal severely autistic child why she ran out of the room before asking someone else. Even if the child cannot respond, it's still important to ask the child first.

Encouraging self advocacy from an early age

(***Note to readers: Paragraph 1 and 2 contain information from Carly Fleischmann's book, Carly's voice. If you think this will spoil the book for you, feel free to skip). Below you will find tips for teachers, and lots of other school staff, how to promote self-advocacy and even resources to facilitate self advocacy.)

When Carly Fleischmann was 13, she told her father that she wanted to go to school with her twin sister Taryn. Her father replies "Taryn goes to Hebrew school. She takes Hebrew, French and a full curriculum. It is not the right place for you". Carly was supposed to take an assessment tomorrow to see what level she is at. Carly said "I have taken lots of tests and know what I can and cannot do" which is a common experience of those of us in special education.

Carly's father begged Carly to take the assessment "It will help them come up with a better program for you". Them is the school, not Carly. The school placement should be Carly's decision, not her parents. Carly has in addition criticized her therapy program, such as when her therapists ask her to spell "chips" for a chip or "spell your name" followed by "good have a chip" and then asking her to spell her name again. She said this makes her feel stupid.

Even though Carly made it clear what she wanted, she has no legal standing because under the Canadian law, it is the parents, and not the child who make the decisions. In the United States, she would not have the right to attend her own IEP meeting, which is a meeting about her and her education. Under the Individualswith Disabilities Education Act, a student must be invited to the IEP meeting if transition is being discussed. A transition plan is required for all students who are turning 16 when the IEP is implemented. Districts may set a lower minimum age. Before 16 or if transition is not being discussed, the school is not required to invite the student to the IEP meeting. That is up to the parent.

Section 300.321(b)(1) requires the public agency to invite a child with a disability to attend the child's IEP Team meeting if a purpose of the meeting will be the consideration of the postsecondary goals for the child and the transition services needed to assist the child in reaching those goals, regardless of whether the child has reached the age of majority. However, until the child reaches the age of majority under State law, unless the rights of the parent to act for the child are extinguished or otherwise limited, only the parent has the authority to make educational decisions for the child under Part B of the Act, including whether the child should attend an IEP Team meeting.

The very IEP meeting that is about their education, performance and progress, goals and what they will be doing. Yet the law says it's up to the parents to decide whether to involve the student, instead of an inherent right for the student to be present in a meeting that is about them and affects them. These include my parents, who did not care about my education, who did not care that I had preferences they should advocate for, and other parents who may place their children in placements like the Judge Rotenberg Center.

If you are a teacher, counselor, related service provider or whatever, here are some things you should be doing to encourage self advocacy.

1.   Have an ongoing dialogue with the student regarding their disability. “Ongoing dialogue” is not one or two mentions of the disability throughout the year, or a big discussion on the disability a week before the IEP meeting. Ongoing discussion is a discussion on a regular basis about your student’s disability, how it affects them, their IEP goals, their progress, etc. You can start off by saying “You have a learning disability. This means your brain works differently when you do math”. Then explain how their brain works differently. With teens you can be upfront, using the Wikipedia definition. But I am giving advice for younger children. Talk about their goals. “every year we set goals, what we want you to do this year”

2.   Involve the student in making the goals. Sit down with the student and say “every year we set goals. This is what we want you to do better at every year. We want you to decide what you need help with” and go from there.

3.   Invite and involve the student in the IEP meeting. 14 is the age where you are required to invite the student to the IEP meeting. But it isn’t a guideline. “Every year your parents, teachers, counselors and therapists have a meeting where we discuss how you are doing and how we can do better. We need you to tell us what will help you. Have the student write down what they want to say”

4.   Communicate with the student on the regular basis on their progress.

5.    Use the “My IEP meeting” and “IEP goal tracker” worksheets to help facilitate student involvement in IEPs.

There are some cases where it's inappropriate to involve a student, such as a student who has severe Reactive Attachment Disorder or it's detrimental to their mental health to be present at the IEP meeting. However, only under those cases should a child be denied involvement, where it is detrimental to their health and safety.