When Schools Say “NO” to Inclusion

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

“There is no spoon?” Disability style

Day 6 of our Chris Brogan Every-Day-for-30-Days Blogging Challenge
Follow us on Twitter #CB30BC

“Spoon boy: Do not try and bend the spoon. That’s impossible. Instead… only try to realize the truth.
Neo: What truth?
Spoon boy: There is no spoon.
Neo: There is no spoon?
Spoon boy: Then you’ll see, that it is not the spoon that bends, it is only yourself. Only try to realize the truth. There is no spoon.
(Polish subtitles: hey, the more diversity the better.)

“There is no spoon?”-Disability style

rustic chicken soup with reflective spoon 2
Creative Commons License photo credit: wintersoul1 Last Sunday I went to pick up Aaron at his house. I told the caregiver we were going out to lunch, but–no surprise–she forgot. So Aaron and his housemate were sitting at the kitchen table eating soup and grilled cheese sandwiches. Now, soup and grilled cheese are lunch classics, so no problem there.

But, in one glance, I could see both these men were struggling with the soup because they were eating it with teaspoons. Both have lots of motor issues, and both would put soup on the tiny spoon and lose most of it by the time it got close to their mouths.

This particular staff person is from another country and we have had problems with her just not understanding things ie. she used shaving cream with the electric razor– ruining the $100 shaver and confusing Aaron. She is also the one who didn’t think you needed shampoo to wash hair…. So, I’m thinking, maybe she doesn’t know any better, it’s a cultural thing or something. (Okay, I’m really silently reading her the riot act.)

I nonchalantly go over to the kitchen drawer and figure I’ll just give them bigger spoons.

But, NO SPOONS. Not even a bent one. (Where’s the bald spoon boy when you need him?)

In fact, there is only one knife in the drawer and about three forks. I look around, but they don’t have a dishwasher, and the dish drainer holds no silverware, so I wonder where in the world is the last set of silverware I bought for the house? How do they keep losing silverware?

“Realize the truth.”

Deciding it was an impossible situation, I just left with Aaron and took him to a restaurant for lunch, like we planned in the first place.

“What truth?”

1. Do I report this to Aaron’s care-coordinator and let her handle it? (case worker)

2. Do I ask the head staff person? (Except she works there four days a week and certainly would know there is no silverware.)

3. Do I ask everyone what happened to the silverware and make a big deal about them being … maybe irresponsible? or untrustworthy? (After all, Aaron lives better off than some of the staff and things have disappeared before.)

4. Could this be a situation like a previous backpack issue?
One Sept. I bought Aaron two backpacks because they were on sale and he usually loses one or it gets so torn up he needs a new one by January, when they are expensive and hard to find. When the staff person saw Aaron had two, she took one to a person in another house where she worked because that person didn’t have any. So maybe this silverware thing is the same. Maybe the people with disabilities in another house didn’t even have teaspoons? So, in an institutional–all things belong to all people and we think of the greater good–the staff person decided Aaron had more silverware than the other person so all’s fair.

5. ???? (This is the kind of stuff that keeps me up at night)

“It is not the spoon that bends, it is only yourself”

So, what to do? How do I solve this problem and upset as few people as possible?

Everyone says–and I mean everyone–I am too involved in Aaron’s life and just need to let the staff do their job. Certainly the parents of Aaron’s housemate don’t even see things like the spoons or the rags they use for towels, or the fact that the light-bulbs don’t work in the living room lamps.

But this is for Aaron–how could I just ignore this?

Not sure if this was right, but the next day when I brought Aaron back to his house, I just slipped a couple knives and bigger spoons into the kitchen drawer. Didn’t say a word.

Now next week, St. Vincent’s Thrift Store has everything half-off on the first Monday of every month. I’m betting I can find a good deal on a whole set of silverware–or at least more spoons. I can probably find a couple better towels for everyone too.

I’ll slip over to the house during the day when no one is home, put them away and … bet no one even wonders where the silverware came from.

But I’ll know, and Aaron’s life will be better for it. And that is enough.

Matrix World meets Disability World

I’ve read the lesson of the Matrix is that the physical world is all an illusion and if we just free our minds, problems are not as bad as we think. In Disability World, we can free our minds all we want, but it would be an illusion if we believed things are not as bad as we think–they are. But love and actions are better than illusions.

Comments Please:

What would you do? Any similar stories?

Keep Climbing: Onward and Upward.

All the best,

Mary

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In case you missed it:

Day 1: “Every Day for 30 Days” Blogging Challenge or “IBP” (Individual Blogging Plan) Day 1 of the 30-Day-Every-Day Blogging challenge. (click here)

Day 2: Memory Rocks: not being objective (click here).

Day 3: Turning it over to the professionals (click here)

Day 4: (click here)

Day 5: (click here)

Check out what my challenge partner Alison Golden of The Secret Life of a Warrior Woman:“Disabled in Waiting”

Attack by “Friendly Fire”: People with Autism and their families

090902-A-3355S-
Creative Commons License photo credit: U.S. Army Garrison – Miami

So‐called “friendly fire”, sometimes termed fratricide or amicicide, is officially defined by the U.S. Army as “the employment of friendly weapons … which results in unforeseen and unintentional death or injury to friendly personnel.” (Wikipedia)

Yesterday I was sitting at my computer when the security system began flashing red alerts saying it found 2 then 6 then 15 viruses which ranged from strong to critical. I was just sitting there watching helplessly. Immediately I turned the machine off and called for help. Thankfully 24 hours later, I’m typing from another computer and a good friend is taking precautions so this never happens again. Turns out the virus attack was so nasty it even dismantled my computer’s security system. Some unknown enemy snuck up and damaged something that was important to me. No one was hurt, my friend thinks he can fix it. So, C’est la vie!

I can handle those kinds of anonymous attacks. What happened next was more upsetting.

When my computer life resumed, I checked my email messages. For the second time in one day, I felt I had been caught in an ambush. But this time the attack was coming from people I know and care about. People who are supposed to be helping us–friendly fire.

(edited to protect confidentiality)

From: Aaron’s Support Coordinator
Sent: Wednesday, October 06, 2010 1:53 PM
To: Mary Ulrich
Subject: Aaron’s house

Hello Mary,

This is the e-mail that you have been dreading. For years, Support Coordinators have put out e-mails about potential roommate matches, visits, etc.

Previously I have been able to say that Aaron and (his roommate) are not out of their (funding) ranges and guardians/parents are not interested in roommates, and they stop contacting me.

Apparently, per direction by (the director), we are in a financial place that we can no longer have the luxury of choosing not to move forward with roommate visits. I was told that I am to contact you and (Aaron’s roommate’s) guardian to set up a roommate visit for (his house). We have someone receiving a waiver and he needs a home in which to live. (Aaron’s house) is definitely considered a 3 or 4 bedroom home, so we have to consider (it) as an option.

Please contact me or (the director) with any questions or concerns that you may have.
Thanks, Mary.

Signed (Support Coordinator)

An Unsteady Peace

When my computer gets fixed, I’ll see if I can find the letters and presentation Tom and I made to the county board about this issue two years ago. Tom and I thought this was settled. Aaron has lived in his own place for over ten years. I worked for a year to make sure Aaron and his roommate had the funding levels in their Medicaid Waivers to sustain the staff they needed. I worked for another year to figure out the HUD Rent Subsidy Program. (On both, I’m proud to say Aaron was one of the first in Ohio.) The fact my computer is inaccessible and I can’t even retrieve my previous correspondence makes me feel even more vulnerable. Last time we explained in great detail how adding additional roommates “which results in unforeseen and unintentional death or injury to friendly personnel” –okay, death is too harsh, but the “unintentional injury” and a diminished quality of life would surely apply. The one staff person who has been with us for 7 years says she will quit the minute another “client” is added to the house. The complications go on and on.

Aaron’s residential situation is being held together with scotch tape and spit as it is. To add one or two more people to his living situation is a disaster in the making (everyone agrees with this).

Amicicide

At least, our advocacy efforts last time delayed it a year or so. But now it is back—in our face. It hurts deeply that we cannot trust the people in positions of power. Their best interests are not the same as ours. We have worked with the county board for probably 25 years. I was on the board for 6 years and have friends there. Our support coordinator is a dear friend who has seen us through many disasters in the past 15 years we have worked with her. The Director is also a dear friend. So these are good people who I love. I appreciate their budget issues.

But, if I don’t speak up for Aaron’s interests who will? Plus, Aaron’s roommate’s parents are 87 years old and his mother has intense medical issues. Plus, this must have happened pretty quickly because we saw our Support Coordinator at a meeting on Monday and she didn’t say anything. I’m not sure what happened in those two days since. Plus, plus, plus….

Battle Plans

I haven’t decided the exact plan of action. This is such a surprise attack I’ll have to get over my shock, disappointment and anger before I can take a step forward. But it’s time to put the battle fatiques back on and geer up for battle. Again.

Last time when we were attacked, we resolved it. This time the enemy (our friends) know our game plan and strategy.

Further, when Tom and I are in the nursing home and unable to stop them, we know the assault will again happen. So do we just accept the inevitable? Is this a battle we cannot win?

In Disability Scoop there was an article titled: Autism Moms Have Stress Similar to Combat Soldiers (click here). “Mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers…” The author’s research points out that when physical hormone levels and chronic stress levels were measured, they were similar to those of combat soldiers.

No surprise there. And I would give this email as proof of the reasons. Surprise Attacks, Friendly Fire… It’s like this violated our peace treaty. A bomb that dropped from the sky during the night. And, from those we trusted and depend upon to look out for Aaron’s best interests. From those in the “helping profession.”

Thoughts?

Do you have an extra bedroom in your house? There are lots of homeless people around. Since people don’t want to pay more taxes, what if we just choose someone to live in your house?

More to come:
Keep Climbing: Onward and Upward.

All my best,

Mary

Day 16 of our Chris Brogan’s Every-Day-For-30-Days Blogging Challenge Follow us on Twitter #CB30BC
Alison Golden of The Secret Life of a Warrior Woman is my partner in this challenge: (click here to check out her new post.)

Sandwich generation? It’s a pickle.

IMG_8005.JPG
Creative Commons License photo credit: williamhartz

People who have to take care of their elderly parents and their children are sometimes called the “Sandwich Generation.” My experiences the last couple days, reminds me not only of a sandwich, but an old baseball game called Pickle.

In the game of Pickle, two fielders throw the ball back and forth trying to squeeze the runner until one of them can tag him/her out. The runner is said to be “in a pickle” because there are few choices.

In the post, “Attack by friendly fire: People with autism and their families” (click here) I shared how my son, who is 35 and has the label of autism, is caught in a residential crisis. The county board is the fielder on Base 1.

This same week, I’ve been running my mother who is 88 years old back and forth to the doctors for her acute pain. Today the doctors decided to give her full hip replacement surgery. My mother is the fielder on Base 2.

Me–I’m the runner caught in the middle, “In the Pickle.” I keep hoping to get a break and make it safely to the base. Back and forth, forth and back… go from one crisis to the next. Try not to be tagged “out.” It’s tricky, but maybe I can slide into a base, or pull a turn and twist maneuver, or run real fast. The odds aren’t good. But, sometimes we get lucky and can get to base safely.

Aaron’s problem is actually the more difficult to solve because the “system” is set up to deal with people like my mom. There are thousands of seniors having replacement surgery every day. The system, for the most part, works well. If it doesn’t work, there are thousands of family members across the nation who can advocate and fix things. Still not easy, but there are lots of voices and advocates.

With Aaron there are few voices to advocate. Few people have the luxury of even being in our situation.

Many parents of adults with disabilities have their child living at home. They might be on the waiting list for the few Medicaid Waivers. If their child does get residential services they do not know what best practice looks like, they are not likely to rock the boat or ask questions. Many parents are afraid the services will be taken away. Many think the agencies are doing the best they can and just give up.

Thanks to so many of you who have offered your prayers and concern. Thanks also to those who have given me some ideas and encouragement as we move forward.

Right now, I’m still “in the pickle” running between the bases.

Comments:

Are you also a member of the sandwich generation? Also caught in a pickle? Tell us your story. How are you dealing with it?


Keep Climbing: Onward and Upward.

All the best, Mary

Day 19 of our Chris Brogan’s Every-Day-For-30-Days Blogging Challenge Follow us on Twitter #CB30BC
Alison Golden of The Secret Life of a Warrior Woman is my partner in this challenge: (click here to check out her new post.)