When Schools say “NO” to Inclusion

The Inclusive Class Podcast presented a panel with Tom Mihail, Paula Kluth, Torrie Dunlap, Lisa Jo Rudy, Frances Stetson, Kathleen McClaskey and myself.

The Title was: "When Schools say 'NO' to Inclusion"

Topics include Universal Design, Technology, Differentiation, Inclusive after-school and community recreation, and in the last few minutes I talked about Inclusion as a Civil Right and strategies for getting inclusion with your IEP.

Below is the supplemental material for my topic. If you have any questions please contact me.

Here is a recording of the broadcast:

Listen to internet radio with The Inclusive Class Podcast on Blog Talk Radio

So, you are sold, you have heard all the information about inclusion, you know in your soul this is what would be great for your child. You talk to the teacher, the principal, anyone who will listen and they tell you it won't work for your child, it's a passing fad, it is too expensive, it will hurt the other kids in the school...blagh, blagh, blagh.

What do you do?

Here are the 5 Points I outlined in my part of the panel:

1. Learn the History of People with Disabilities.

Legal Segregation

Society and Schools have been saying “No” to Inclusion for hundreds of years for many people, not just for people with disabilities.

1800-1900s. Institutions and Forced Segregation were common for those with the labels of mentally defective, feeble-minded, idiots, uneducable and untrainable. Individuals and Parents had no say. People who were different were removed for the health and safety of the community.

Today we still have prejudice against minorities, young women who are unmarried and pregnant, gang members, young people who are gay or lesbian, immigrants, poor, people who don't speak English, Native Americans, homeless, children of migrant workers...

Our society is more diverse every day, we need inclusion for everyone.

Parallels in Time: A history of people with disabilities

Parallels in Time 1 and

Parallels in Time 2

Check out the section in Parallels 2 A PLACE TO LEARN.

(Page 59-60 has the definition of Inclusion)

(p. 61 has reference to Paula Kluth and a picture of my son Aaron)

Inclusion is a Civil Right

14th Amendment:

“The 14th Amendment to the Constitution was ratified on July 9, 1868, and granted citizenship to “all persons born or naturalized in the United States,” which included former slaves recently freed. In addition, it forbids states from denying any person "life, liberty or property, without due process of law" or to "deny to any person within its jurisdiction the equal protection of the laws.” By directly mentioning the role of the states, the 14th Amendment greatly expanded the protection of civil rights to all Americans and is cited in more litigation than any other amendment.”

Reference:

Questions the Courts had to decide:

Citizenship: Is someone who has an intellectual or other disability, a person? (consider the slaves, Native Americans, women, immigrants, prisoners…)

Due Process: If you have a disability, do you have the right to due process? (consider people with physical, intellectual disabilities, people who are deaf, blind… can’t read/write/talk, people who can’t pass IQ tests…)

Equal Protection: If you have a disability, are you entitled to the same rights and benefits other people have? (go to school, live in community, get jobs…)

Consider the implications:

Plessy v. Ferguson (1896) Separate is equal. 50 years of Jim Crow Laws.

Brown v. Board of Education (1954) “Separate is inherently unequal.”

Fascinating Reference:

PARC Class Action Case: A Game-changer

(Interviews with Tom Gilhool and Gunner Dybwad are also in Parallels in Time 2)

Video and transcript Tom Gilhool at Temple University:

Testimony of Tom Gilhool before the Joint Subcommittee Hearings on “the Events, Forces and Issues that Triggered Enactment of the Education of All Handicapped Children Act (EHA) of 1975” in TASH newsletter, 1996 p. 11-15.

Excerpt about PARC decree and 94-142: Teacher Training and Best Practice

The Requirement that Schools Know and “Adopt” “Effective” “Promising” Practices. Requires the delivery of an “effective” education. One, the Act (EHA) requires states and districts to see to it that all teachers, both “regular” and “special” are fully informed of and continuously trained in “promising practices” in the education of children. “Second, the Act requires every district as well as the states to “adopt promising practices’ Third, the Act’s requirement of “a free appropriate public education has been help by the Unites States Supreme Court to mean an education “reasonably calculated to enable the child to achieve education benefits”
Hudson v. Rowley, 458 U.S. 178, 203-04V (1982).

NOTE: Remember to NOT just look at the current regulations, go back into the Congressional Hearings before each law was enacted, the legislative history, court cases…

Other Court Cases:

“Inclusion is a right, not a special privilege for a select few” (Federal Court, Oberti v Board of Education).

You will want to quote the most relevent and recent cases.

2. Become an Expert on IDEA

The best resources I know are Partners in Policymaking’s series of lessons on IDEA.

Free, online, study at your own pace.

National Dissemination Center for Children with Disabilities (ages 3-22).

3. Build Alliances

Focusing on the dignity and goodwill of the people you're working with. Build trust. Create a common vision.

Partners in Policymaking has programs in almost every state. The courses are designed for parents of young children and self-advocates. New groups start every year and are usually funded by your state DD Council. On the Partners website, find your state liaison.

NICHCY has a list of organizations and Parent Training Centers in each state. Find people both on the National, State and Local level who think like you do and can help.

National Dissemination Center for Children with Disabilities (ages 3-22).

National Organizations for Professionals often help parents and teachers. TASH helped me. I know the ARC, United Cerebral Palsy and National Down Syndrome Association have done advocacy work. I’m sure there are others.

Check out your local university. Sometimes you can find a professor or student who can help.

In our particular situation, because no group existed-we started a parent group in our local school district.

Set group goals: start an extended school program in the summer; make the buildings more accessible with universal design; start an after school Job Club and Key Club at the high school. By focusing on specific goals we were able to get local grants, publicity and see tangible results for our children.

NOTE: In hindsight, I would have made this an ad hoc committee of the School PTO or General Education Parent Organization. I would ask parents and teachers of general education students to be on this committe so it is inclusive. 20 years later, duh, it is so obvious.

Univ. of New Hampshire has great programs and resource materials.

Clay Aiken's Inclusion Project. This looks good, but I haven’t tried it.

4. IEP: Educational Evaluations

The first part of the IEP process is getting evaluations of current level of functioning and setting specific individual goals.

Be creative. Don’t let the school psychologist run the show.

Have your IEP team decide what kind of evaluations they need in order to have your child make educational progress in all the school environments.

There are the formal evaluations that are the traditional testing tools of the experts. And, there are the individual informal tools also designed by experts, but cannot be standardized and put into multiple choice answers.

Informal Evaluations

1. Person Centered Planning, Circle of Friends can supplement the formal evaluations and look at social relationships, before-during-after school-weekend-summer activities, this can also be used for team building, communication, transition and long term planning.
http://inclusion.com/ Where inclusion began, great tools.

2. Educational Evaluations

Educational Evaluations are usually conducted by a teacher or other educator with the appropriate teaching license.

Educational Evaluations look at an individual person in their life spaces. Aaron’s evaluation started in his home, followed him on the school bus, in the classroom, in the lunch room, bathrooms, gym, after school activity and back home. The evaluation compared Aaron’s current level of functioning in each environment and then made suggestions for IEP goals.

For instance, the educational evaluation shows the "individual benefit" for Aaron. Not the whole class or school, just Aaron.

The Educational Evaluation determined Aaron, with accommodations and related services, could be in an inclusive class. What supports would he need? What supports would the teacher need? How would the curriculum be differentiated? What technology? Universal design strategies could be used?

See the difference between this sort of evaluation and a traditional IQ or standardized test?

Who Pays?

The tricky part is that if the parent pays for the evaluation, and chooses their own “expert,” then the school district only has to “consider” the recommendations.

If however, (at least this is how it used to be), if the parents or teacher ask for an evaluation, and the school district agrees to pay for the evaluation, then they have to use that evaluation to develop the IEP, or if they disagree, they have to get another evaluation saying the first evaluation was not appropriate, and why.

If you go to court, the educational evaluation can make all the difference. If you are writing IEP goals, the educational evaluation gives you a practical starting point for goals and objectives. (The conversation is NOT about "Should we do this?" but rather, "How do we do this?")

And, if the parent does pay for the evaluation and “prevails” in a due process hearing then the school district has to pay. Of course, it goes both ways and is risky because if the parent loses, then the parent has to pay.

How do you find an expert?

In our due process hearing we used our contacts from TASH (a national organization) and one of Lou Brown’s graduate students from the University of WI-Madison. This process was repeated several years later when Aaron was in Junior High, and again when Aaron graduated.

We also used local university graduate students and county respite providers when appropriate, ie. They did independent studies to help us design an after-school program and going to the prom.

If you are going due process, find out who the expert is in the area you are challenging.

Check out professional organizations, journals, university faculty. Who is going to know how to do the job? Who is willing to testify? Who will impress the hearing officer?

5. Be BadAss Confident

Know what you believe and how far you are willing to go.
Even if you are uncertain, typically shy and withdrawn--you have to act fearless.

This is your child, This is your class, the time is NOW!

When people see you walking in the grocery or in the school you want them to see you and immediately know what you stand for: “All means All”—“Inclusion means Belonging to the Community.” You have to model what you want others to do.

Build trust, convert the doubters. It can be done--and it's up to you. And, you will join the thousands of other parents and advocates who have made a difference for one child or many and have moved history and inclusion forward.

Segregation and Inclusion by Zip Code

In my opinion, this is why we need a national policy, federal laws and oversight.

Vulnerable people with disabilities and other minorities should not have to reinvent the wheel, every year, in every city and county.

Do we want individual states and school districts to make decisions about segregation and inclusion?

Would you want to live in Mississippi, Alabama, Louisiana… and I include Ohio?

Different school districts have different definitions of inclusion. I recently visited what was called an “Inclusion School.” To my shock, the principal proudly told me, “Inclusion means EVERYONE in the school is on an IEP.”

After we won our due process hearing, we moved to a neighboring county where the school district shared our values.

The move was the best thing we ever did.

First, after we won our due process hearing, it was like Aaron had a tatoo on his forehead that said, "Don't mess with me."
Our reputations guaranteed they took us seriously.

Second, I got elected to the County Board of Developmental Disabilities. One of the proudest days of my life was when I got to make the resolution to close the segregated county school.

Third, because the school district was good for Aaron, it was also
an excellent school district for my other son who had the label of "normal."

Bottom-up; Top-Down: Baby Steps

You can achieve Inclusion from the IEP process: bottom-up.

But it is easier to work from the top-down.

Try to get on influential committees, or find allies in leadership positions that will work for inclusion. If your school board and/or school administrators embraces the Inclusion paradigm, and understands how this will be better for all students, then you are well on your way.

Try to get inservice for staff, parents—both general and special, about inclusion, differentiated instruction and universal design.

Baby Steps:

I like to think of a yard stick. On the one end is segregation, on the other is inclusion. If I think an action, a decision, anything... is a step in the direction of inclusion--I accept it. There is always tomorrow.

Celebrate each small victory. There were many times when I had to take a deep breath and tell myself, "This is the best we can do today. Be happy."

Moving Toward Inclusion by Michael Giangreco.

Last Thoughts

I wish I had a magic wand to make it easier for each of you.

Twenty years ago, we thought this would all be figured out and our children would just be children, parents could just be parents, teachers could just be teachers.

There is an old "Up With People" song that says, "Freedom isn't free. You've got to pay the price, you've got to sacrifice for your liberty."

Wishing each of you, freedom, libety and inclusion.

I hope you will share your thoughts in the comments.

Keep Climbing: Onward and Upward
All my best,
Mary

Related Blog Posts:

Note: Since this whole website is about inclusion, almost every article tells part of the story. Some are about school issues, many are about adult issues. Here is a sampling:

What is Inclusion?

Dream Plan 1 for Aaron, Normalization

Dream Plan 4: Aaron is an adult

The Race Toward Inclusion: Do you see it?

Better than Church

Building Community| One grocery trip at a time

Test Questions| segregation or inclusion?

The Animal School| Differentated Instruction

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