Functional Curriculum: use it or lose it

To celebrate the new school year here are some of my favorite posts:

Article 1: Why Do We Go to School?

Article 2: Back to School| A New Year of Learning

Article 3: Back to School| What is Inclusion?

Aaron learning money skills

Aaron learning money skills to use in store

Functional Curriculum

When my son Aaron was in school, shopping was part of his curriculum. From the time he was ten years old he went to the bank and grocery one day a week as part of his special education school program.

This was best practice and came from the work of Drs. Lou Brown, Alison Ford, Sharon Freagon and many others. The idea of a functional curriculum for people with autism, intellectual and developmental disabilities is:

* it takes longer to learn skills, so let’s make sure we teach important skills and not waste their time on dumb stuff

* it takes lots of practice, so let’s give the student lots of opportunities and trials

* use it or lose it, so let’s make sure the skill is something the student will need their whole life

* transition from school to adult life will be smoother

* we only teach skills that if the person didn’t do it, someone else would have to do it for them

* the ability to purchase items would give the person more dignity, self-esteem, self-determination skills and choices in their life

The way it worked was each week, Mom sent in a check for $10.00 and a shopping list. The class went to the same grocery store (because each store is different). Each student cashed their check at the bank and then bought items from the list to take home.

In addition, students also planned a lunch to be made in the classroom the following day. Each would purchase a couple items for that group lunch. These items were purchased with the classroom credit card.

This functional curriculum was based on the philosophy that Aaron would go to the grocery the rest of his life. Before the school year started the IEP team decided this was a high priority skill because he would need to buy food and other items when he was an adult. If he didn’t learn to purchase these items, someone else would have to buy them for him. If Aaron could purchase the items he would have more choices and say in his life and therefore a better quality of life. (Who wants someone else deciding you can only have Cheerios for breakfast all your life.)

Related Service Staff

The curriculum was designed by the IEP team including specialists and the parents. After all, who would be taking the student to the grocery on the weekends, summer, and after school. And who knew what the student liked better than their parents?

I was in the school a lot and went on many of the community training trips with Aaron and his class.

It takes a Village

The speech and language therapist helped Aaron build picture sequences of “shopping at Krogers,” check-off lists with pictures for grocery lists, and learn to interact with the cashier “Thank You” and give a High 5 to the bagger….

The occupational therapist helped Aaron figure out which coin purse/wallet worked best, learn to pay with the next highest bill, learn how to take the money out of his wallet (hold wallet in left hand and take out bills with right) and after many failures of getting the change back in the wallet–it was decided Aaron should just put the change in his pocket….

The physical therapist helped Aaron figure out how to climb up and down the steps on the bus (hold on the rail with his right hand and count the steps), how to maneuver the parking lot (and yes we had an IEP goal that said with 50% accuracy), how to enter the right door–even if there are two “in” doors,
how to reach the items on the bottom shelves (hold on to the grocery cart with his left hand and reach with his right)….

Depending on the therapists schedules, they might only be involved in periodic assessments, or they could go with the class every week. This was an excellent way for the therapist got to really see Aaron in this environment and practice REAL life skills.

The teacher and assistant teachers went every week with the 6-8 students in the multi-handicapped class. She/he helped Aaron match his pictures to the actual items in the store, find his favorite items and put them in the cart, learning appropriate social skills….

After High School

Unfortunately now that Aaron is out of school, he has lost most of those skills because adult service staff refuse to take him to the store or don’t have the knowledge or support they need. Here is a story about Aaron’s home (click here). It is not the fault of the staff. Some of them are very loving and do a great job.

So I take him every weekend when he is home with us. Here is a story of a recent shopping trip (click here).

Aaron and I are a team and we have worked out our own system. We only shop for about 10 items and Aaron puts the items in the cart. Sometimes Aaron will grab something off the shelf and if it is anywhere close to something he might want, I’ll let him buy it. ie. if it is a bag of cookies or cereal –he can keep it. If it is a box of denture tablets probably I’ll tell him what it is and put it back.

Choices: Quality of Life and “If Only”

If I had the opportunity to change things in Aaron’s life, it would be that adult services used a functional curriculum and adult residential services gave Aaron and others with autism and severe disabilities the opportunities to practice their skills. There is no question Aaron would not currently be LOSING these skills. There is no question these skills would enhance Aaron’s self-esteem and quality of life.

The reason I could insist on these skills being taught and used when Aaron was school age was because of the federal mandate in IDEA. The Individual with Disabilities Education Act said that parents were part of the IEP team and the parents had due process if they disagreed with the school personel. There is no such mandate for Adult Services, no due process for parents and/or guardians. Plus, in Adult Services the staff does not have to be trained or have any teaching license.

As my friend Deb used to say, “When I am made Queen of the Universe” I will declare it. Until then, I’ll take Aaron every weekend and give him as many functional experiences I can.

And of course, I’ll dream of the day I am Queen of the Universe. *smile*

What ifs? Comments?

Any stories about your child’s school experiences preparing them for the future? Any luck with using those skills in their adult life?
Anyone else want to be “Queen of the Universe”?

Keep Climbing: Onward and Upward

All my best,

Mary

Related Posts

Building Community| One grocery trip at a time

It’s a Jungle out there| Inclusion in the grocery store

Kill the Turkeys! Life Lessons for People with disabilities

Supported Employment| Mobile Work Crews

And they're off !
Creative Commons License photo credit: Bobasonic

In the last post, Memorial Day and People with Disabilities I talked about how Aaron, my son who has autism, worked at a cemetery after he graduated from high school.

To the best of my recollection, this is how it worked:

The Landscaping Mobile Work Crew

Definition: Supported Employment Model: Mobile Work Crew

A small crew of persons with disabilities (up to 6) works as a distinct unit and operates as a self-contained business that generates employment for their crew members by selling a service. The crew works at several locations within the community, under the supervision of a job coach. The type of work usually includes janitorial or groundskeeping. People with disabilities work with people who do not have disabilities in a variety of settings, such as offices and apartment buildings. Supported Employment

Sometimes Cemeteries are for the living.

JOB ANOUNCEMENT: The cemetery board posts the lawn maintenance jobs for bids in the local paper.

JOB DEVELOPER:

The County Board of Developmental Disabilities (CBDD) job developer bid the job. Because of the size of the cemetery, the administration of the cemetery awarded several contracts. (For the five years I was involved, the CBDD got one of the contracts each year.)

Paid

The CBDD paid the workers minimum wage from this contract. Each member of the Mobile Work Crew was already on Medicaid/Medicare and the seasonal wages were within the limits of their SSI and SSDI requirements.

The job developer negotiated the details of the contract as well as was the contact person for any problems between the cemetery administration and the board as well as members of the mobile work crew.

Natural Supports

The cemetery provided the equipment. There was a garage-type lounge for all the crews and workers with a table and restrooms. They could mingle with the other workers from other lawn companies (non-handicapped) in the lounge. There was some natural support from the other workers who were doing the same jobs and the same sweating.

SUPERVISOR OF MOBILE WORK CREW

There were six people with disabilities and a supervisor on the crew. The supervisor was a year long salaried employee of the county board of developmental disabilities. She had experience working with people with disabilities and had been trained as a special education teacher. She had total responsibility for keeping the workers safe, happy AND getting the job done. If she needed extra help, she would go to the job developer or her other CBDD staff.

Aaron’s job coach was under her supervision (because she was in charge of the whole job) but worked independently with Aaron.

TRANSPORTATION

All the adults with disabilities would be transported from their homes to the sheltered workshop. The supervisor would drive a small van, similar to the vans the other lawn service companies used, from the sheltered workshop to the cemetery and then back to the sheltered workshop for the trip home.

Inclement Weather

On days when it rained, the crew could stay home if they wanted, or hang out at the sheltered workshop. If there was work at the sheltered workshop (usually not) they were able to jump in. If there was no work they could hang out with their friends and play cornhole, bingo or whatever the activity.

JOB DESCRIPTION

Ongoing Support

Before the crew began work, the supervisor and job developer made task analyses of each of the jobs. The individuals with disabilities applied and interviewed with the supervisor. If there was a good match, the training, modifications and accommodations were added to the individual’s Individual Service Plan (ISP).

OVERVIEW:

Who knew there were mowers about a foot wide which fit easily between the older tombstones? There were four mowers in this mobile crew.

There were two weed-wackers or whatever they are called. (The cords swing around and cut the weeds which the mowers miss.)
There was a “task analysis” of each job.

They were trained on the job. (They didn’t practice cutting the concrete in the parking lot to get ready*smile*)

Because the job was repetitive, it was a perfect fit for many of the workers. They knew exactly what they were supposed to do, and after a short time, were independent in many parts of the job.

If any of the workers needed adaptations (shorter hours, more breaks, special gloves or boots…) these were included in their ISPs (Individual Service Plans). Therapists (Occupational Therapist, Speech/Language and Physical Therapist) were available for the initial evaluations/training, if necessary.

Establishing Routines

The supervisor would start the day with some conversation, some joking around and individual attention to each of the crew members. They would get a short break mid-morning, they brought their own bag lunch, and a mid-afternoon break. But most of the day, it was sweaty and hot and lots of hard work—serious business.

The supervisor made sure the crew members had sun-screen, hats, appropriate clothing, solid shoes (no sandals), water….
She also worked side-by-side with the workers. She made decisions to go to another section if a funeral was in progress, if the area was underwater…; she pulled weeds… and did whatever it took to make sure everyone was successful, and the finished job met the requirements of the cemetery board.

Partial Participation

Aaron, my son with the label of autism, does not have the skills to run a lawnmower or weed-wacker. He would not be able to be part of the mobile work crew of 6 workers who are mostly independent on the job once they are trained. Because Aaron was in the official “transition” from school to work, he was eligible for a job coach from Rehabilitation Services.

So, because he had the physical support of a job coach, Aaron had the opportunity to join the workforce.

Is there some job he could do at the cemetery? Could he partially participate in this work?

After doing an ecological assessment of the job, Kim (Aaron’s job coach) decided Aaron could pick up the sticks before the lawn mowers came. So Aaron and she would drive a golf-cart to the area where the crew was mowing, and then they would collect sticks, dead flowers, and other stuff left on the graves, put them in a trash container tied to the back of the golf-cart and then take it to the dumpsters.

Aaron loved this job. First of all, he loved Kim, the job coach. She made him feel important, she helped him when he had trouble bending over, she helped him put the sticks in the trash container, she helped him wheel the container to the dumpster. Kim, looked at every piece of the job and asked herself, “How could Aaron at least partially participate in this job?”

Plus, Aaron loved riding in the golf-cart. When Aaron did particularly well, Kim would give him an extra long ride around the large monuments.

The side benefits were Aaron made a small amount of spending money, he paid into social security, he was out in the sunshine (with lots of sunscreen) and glowed with health, he was physically strong from all the exercise, plus the emotional benefits: he knew he was contributing, he was part of a group of people who valued his work, he could make all the noises he wanted (and wouldn’t wake up the dead), he enjoyed riding in the golf cart, instead of physical therapy practicing his balance climbing steps to nowhere—he had a functional way of practicing his balance in the real world. He had a great friend and mentor in Kim. It was a terrific experience.

And, for Memorial Day, 4th of July, Veterans Day… Who was the person who put the flags on the tombstones?

It was Aaron.

Trivia too good to pass up: One of the cemetery monuments is enclosed and heated. Yes, the person who died years ago was so afraid of being “cold”–they stipulated in their will that the space above the grave would be heated (including a back-up generator in case the electricity failed.) That is a powerful “fear.”

Keep Climbing: Onward and Upward

All my best,

Mary

Comments:

Have you ever seen a mobile work crew of workers and wondered how it worked? Is partial participation better than no participation? Should people with disabilities be allowed to work?

FOR MORE INFORMATION:

Partners in Employment

Supportive Living: What an inclusive day looks like.

A Good Day!

Aaron swimming

Aaron swimming

As the number of adults with autism and developmental disabilities rise, many professionals and parents ask me what I am looking for? Will I ever be satisfied? Is it just a pipedream or can we really build an inclusive community around a person with severe disabilities? Can there be a combination of natural supports and paid supports? Does the family have to do it all? Can an adult with autism have a decent quality of life and be happy?

They tell me it doesn’t really make any difference to Aaron, my son with severe disabilities and autism. Their logic says that since Aaron can’t talk, and therefore can’t complain, it is only the mother (me) who has these high standards and expectations and Aaron is just fine and the mother is well, you know, ….

Many times, they tell me how lucky we are… Aaron has a Medicaid Waiver when there are hundreds of people on the waiting lists; Aaron lives in a nice house close to his parents–not in an institution in another city….

The media is full of stories about desperate families of adults with autism and intellectual disabilities: abandon your child to get services — To the parents and professionals who want to give up or “re-institutionalize,” Can we prove inclusion in the community can work?

Many nights these tapes play in my head over-and-over keeping me awake. I ask myself what else I can do to make Aaron’s life more inclusive.I count my blessings.

We are lucky. We’ve worked hard to be where we are, but there is still much to do.

But last Sunday, I went to bed and smiled: “Today Aaron had a good day!”

Here is what this inclusive day looked like:

Aaron’s dad picked him up at 9:30 AM from his house. He talked with K-, Aaron’s long-time caregiver. K- knew when Aaron had had his last BM. K- had given Aaron his breakfast and he was dressed in his Sunday clothes—hair combed, shaved and teeth brushed. He looked like a typical 38 year old.

Aaron came to our house and immediately got his favorite books from the closet. His dad and I sat near him in the living room. Aaron put his books on the coffee table where he turned the pages in two books at one time. When he wanted more books, he went to the closet, chose his books and carried them to the table. (I know this doesn’t sound like a big deal, but because of Aaron’s severe motor and balance issues, this is something we have worked on for years and years.) He also went to the fridge and when I ask if he wanted the pitcher of ice tea or the juice, he pointed to the ice tea.

When he got tired of the books, he went into the kitchen, sat at the kitchen table and we ate our spaghetti lunch together. Aaron put his dishes in the sink.

At approximately noon, Tommy and Isabella (Aaron’s brother and niece) came over. We all changed to our swimsuits, lathered up with sunscreen and walked to the pool at our condo.

Dad started with Aaron in the deep end and Tommy stayed close to Isabella with her floaties. Sometimes we were apart, sometimes we all played ball together and Isabella would swim between Uncle Aaron and Grandpa.

The other families each did their own thing, but we all crossed paths in a friendly community sort of way. There were about 8 other neighborhood kids and their parents in and out of the pool. They all said hello and though we didn’t really know any of these neighbors (it’s a big complex) they were friendly to Aaron and interacted as anyone would. I introduced myself, Tom, Aaron, Tommy and Isabella and hope we will see them again next week.

After about an hour or so, we headed back home, changed clothes and everyone had a drink and ate cheese and crackers.

Isabella wanted to play Hide and Seek in the house (her favorite place is under my desk) and Aaron and I would count to ten and then go and find her. Isabella loves to hide, but then she giggles so much it is easy to find her. Aaron enjoyed the game the first couple times, but then Isabella wanted more and more and so he just sat back on the couch with his books and watched.

About 4 o’clock, Tommy and Isabella left to meet Ana, her mom, who was getting off work; Tom, Aaron and I took a ride to the post office and grocery.

At 5:30 we took Aaron back to his house and K- and his wife were waiting for Aaron to take him to King’s Island, an amusement park. We took him to the bathroom, washed his face and hands, checked his shirt and hair and again exchanged some details about how Aaron likes the Octopus and train ride and …

Aaron got in their car and they were off for the evening. Tom and I went back home.

Too much to ask?

Now, I ask you… is this really so difficult to visualize?

If it was only paid staff, Aaron’s parents are dead or out-of-town, could the staff figure out how to fill up a weekend afternoon with some friendly faces and meaningful activities in the community?

Would Aaron be groomed and the staff person look at his toileting schedule so he is comfortable? Would Aaron be in status enhancing clothes that were clean and age-appropriate so he could blend into the community?

I know K- can do it, because he and his family have known Aaron for years. But I can’t understand why other staff don’t get it.

Aaron is currently between roommates, so right this minute, he has 1-1 staff. This is the best opportunity of his life for getting out into the community, when he gets a roommate it will be 1-2 people and much harder to take them out.

Focus on the positive

Today I have a reason to feel good about Aaron’s life. We all shared a pleasant summer day. Aaron and our family did what many other families were doing all over the city. Aaron was surrounded by people who love him and care about him. We celebrated his self-determination to make choices and do activities he likes. Aaron used the skills he learned in his 22 years in school and therapy. Aaron had staff who were willing to try and give him a good time. Aaron was healthy and happy. I only saw him bite his hand one time all day. The activities were in his home community. There are future opportunities for building a network of long term support and acceptance.

And this is inclusion. This is our vision for Aaron. This is the future we hope for our son. This is all we are asking for. Carpe Diem!

COMMENTS

Come on, share what you are thinking. Am I being unreasonable to expect these kinds of days? Should I just accept “reality”? Do I just count my blessings? Do you have similar experiences? Should we go back- and re-institutionalize?

Keep Climbing: Onward and Upward
All my best,

Mary

Related Posts:

Aaron needs a roommate

Aaron’s Dream Plan #4

Going to the Family Reunion

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