Wednesday, October 10, 2012

Inclusion and the Dignity of Risk, Kindergarten Prep, Part 1

Our family relocated to the East Coast just as Sophia turned 3 and was set to start preschool.  Within the first couple of weeks I fell into a small group of tough, smart as Hell mamas.  We were parents in the beginning stages of our advocacy journeys as our children with disabilities were all under the age of 4.  Together we completed a leadership program through Temple University – Institute on Disabilities called C2P2-EI.   We got schooled on inclusion and the laws that support it.  We met other smart as Hell mamas and papas and got connected to big players in our state.  I met some of my dearest friends through this program.  We may have been dangerous before C2P2-EI, but with it we became armed as well.  My job with PEAC came about as a result of connections made, but most importantly Sophie’s educational trajectory was forever altered.
A year before I was born the revolutionary Education for All Handicapped Children Act, Public Law 94-142 was signed into place. Currently enacted as Individuals with Disabilities Education Act (IDEA), this law guarantees my daughter, born 32 year later, a right to education in this country.  I will be forever in debt to the great ones who came before us who worked tirelessly to get us where we are today and to my peers who have not given up the fight.  (Learn about some of them HERE)  Before having Sophie, I had heard in passing of IDEA but it certainly didn’t pertain to my life.  Least Restrictive Environment (LRE) and Free and Appropriate Public Education (FAPE) were unfamiliar terms.  Now, as a proud member of the disability community and parent to a child receiving special education services, these laws have become my armor.

Now, IDEA does not use the term inclusion, which means that the Department of Education has not defined it.  However, IDEA requires that school districts must place students in their Least Restrictive Environment (LRE).  So, what is that?
These are pretty powerful words that protect Sophie’s right to an inclusive education.  The definition of LRE is the key.  Sophie’s placement must be based on her individual needs.  Placement in a regular education classroom must be the first choice unless her needs dictate otherwise, and that’s where it can get tricky. 
Sophie has a team of experts who have created her lawfully biding IEP.  The team consists of the school principal, her therapists (speech, occupational, and physical), a psychologist, special education teacher, her Personal Care Assistant (PCA), and her parents.  Preparing for her transition to kindergarten meeting took months of work on my behalf but also from her dedicated team who conducted evaluations to assess her needs.  Some people use music, such as the theme from Rocky to pump themselves up before a big event.  I watched Including Samuel for the umpteenth time.
At the IEP transition meeting last spring, Mark and I arrived with my 5” thick double ringed binder.  On one side of the binder is paperwork filled with past and current evaluation reports, Sophie’s IEP, the invitation to the IEP meeting from the school which listed who needed to be present and the purpose of the meeting.  This was especially important as they originally did not invite a general education teacher (which is required in this case) until I made a gentle but firm stink about it. There are progress reports from preschool (called the Intermediate Unit), our communication log, and certificates of achievement and other notes from preschool teachers and her peers.  Most importantly, I have her Vision Statement, which is how we began the meeting. 

On the other side of the binder I brought the law.  I have print outs from the Department of Education, Office of Special Education and Rehabilitative Services (OSERS) about IDEA, LRE, and FAPE.  Documents include information about determining placement from Wrightslaw.  I have an entire annotated IEP to refer to, which is a template for what needs to be in the IEP.  I have a copy of a message from our Director of the Bureau of Special Education who discusses LRE. I have highlighted pages from our school district’s own website about their mission and curriculum for students receiving special education services.  I have resources from PaTTAN on supplementary aides and services and articles written by greats such as Cheryl Jorgenson (The Least Dangerous Assumption), and Kathie Snow (of “Disability is Natural” and Revolutionary Common Sense).  Lastly I have a copy of the Procedural Safeguards Notice, which as its name suggests describes our rights and the procedures that safeguard our rights under state and federal special education law. 

It was a morning meeting that would last hours, so we also brought breakfast.  Treating your IEP team is by no means required but I highly recommend it.  As placement technically cannot be determined before writing the IEP, we didn’t discuss this until the end of the meeting, despite this being my most pressing concern.  Although the school district does not offer a full day for kindergarten, the team felt that she would benefit from going all day.  She would have the social interaction and opportunities to repeat what she learned by being in the same class for am and pm kindergarten.  She would be in a regular education classroom with her supports and services in the class room as much as possible, which for Sophie is 85% of her day.  Full inclusion is generally 80% or more.  This is called push-in, or having her services pushed into the everyday class.

During evaluations, they witnessed that she still has a tendency to elope (escape).  As safety is a main concern, they decided she would have a full-time Personal Care Assistant (PCA), which will decrease as her needs evolve.  The goals and supports written in her IEP are exactly what she needs.  When they announced their placement recommendation, I threatened to kiss the special education teacher.  Everyone roared and the principal dared me as she had not witnessed that before.  I gathered myself together, but didn’t come down from Cloud 9 for weeks.  I had walked in a ball of nerves, ready to fight if I needed to.  IDEA was my armor, the binder my sword, Mark my strength, and Sophie my inspiration.  The principal looked me right in the eyes and said softly, "We believe in inclusion here." 

continued HERE

If you have the time, I highly recommend viewing Cheryl Jorgenson giving a presentation about the Least Dangerous Assumption. It starts about 42 seconds into the embedded video below.

"The Least Dangerous Assumption", Cheryl Jorgenson, Ph.D., Presenter from Institute on Disability on Vimeo.
October Down syndrome
Weekend Blog Hop

Welcome to the October Down syndrome Weekend Blog Hop, in which we all try to raise awareness regarding Down syndrome, connect the Down syndrome blogging community and to inspire our blogging selves with the our collective awesomeness!


Anonymous said...

Love, love, love the vision statement! We all need to do this for our children. Way to go mom and dad, way to go "S" family!

the prairie

WickedMack said...

I would like to just say that you are amazing, and I hope when my Aily starts school I can do so well.

JRS said...

Thank you so much the prairie and WickedMack!