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Access to the Curriculum - Part 4

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Video Transcript:

Hello and welcome. Thank you for joining us today.  My name is Shawna Benson and I am a regional coach for OCALI, associate professor at Urbana University, and former classroom teacher of students with low incidence disabilities. 

This webinar is the final in a four part series entitled Low Incidence Disabilities:  Access to the Curriculum.  Low incidence disabilities are also known by several other names including multiple disabilities or intensive disabilities.  For the purposes here today we will follow the state licensure categories that include mild, moderate and intensive disability types.  We will be focusing on intensive disabilities here today.

In today's session we will focus on implementation of instruction, services and supports for individuals with low incidence disabilities from a forty thousand foot view.  From this vantage point we will be able to gain insights as to what great programming looks like over a lifespan for individuals with low incidence disabilities.

To begin we know that great programs look beyond the disability to discover the person inside. This begins by observing each individual with new eyes - watch them with family, at work, with peers, and when they are alone. Look for skills, movements, expressions, communicative intent. Gather their likes, dislikes, strengths and needs. We need to answer the question:  What does this person really respond to and how do they respond? Talk to those who know the individual best.

All of these insights will help determine the needed supports and services for each person.

Great programs help us see a person with emerging abilities who can learn to use new tools to access their environment like the young boy in the video.  

Video:

First student:

"Popcorn"

"I know you're saying it, popcorn!"

[Background noise]

Second student:

Student: "I... want... pop."

Teacher: "Pop... "

Student: "Pop."

Teacher: "Corn..."

Student: "Corn..."

Teacher: "What's this word?"

Student: "Please"

Teacher: "Very good."

[Background noise]

Great programming acknowledges that barriers exist and planfully scaffolds over and around these barriers to increase access to learning, working and living.

Great programs presume that individuals with disabilities are competent and offer age and grade appropriate tasks with individualized materials for working and for learning.

Video:

[Background noises in the classroom]

"Good job! Look what you made!"

Great programs recognize and demand purpose in all learning tasks so no time is wasted on meaningless, frustrating, energy draining activities that dead end once the work is complete.  Activities should be planned and segmented into small parts leading to a whole activity.  If the large activity is making a meal, then small tasks during the day may include measuring, reading, shopping, mixing, pouring, stirring, baking and so on.  Each of these tasks will eventually be connected and lead to an individual independently making a meal.

Great programs offer support services from paraprofessionals and job coaches when needed, with the hope of fading the support and increasing independence over time.

In the video the teacher, who is seated, gives direction.  The assistant then prompts the student with a visual cue while standing behind so they do not reinforce the learner with their presence.

Video:

"Spider went up the spout again. Up... Down..."

"The eensy weensy spider went up... the water spout. Down... came the rain and washed the spider out. Out came the sun and dried up all the rain and the eensy weensy spider went up... the spout again. Up... Down..."

The greatest accomplishment for support staff is when a student no longer needs support because they have found their own independence. Great programs have clearly defined roles for all professionals, where walkthrough checklists like these may be used in the evaluation process. Great programs work to give all individuals a voice knowing that they will all be different.

Video:

One voice is my world. It makes me feel strong and confident.

Birds sing when you hear my voice (echoes in background). 

Listen to me.

Listen and try to understand what I'm saying.

Show that you are listening to me. 

Listen to me.

(Music in background)

Being listened to makes me feel valued.

Being listened to makes me feel valued.

My voice is my power.

Now I can communicate.

One voice.

My voice is my power.

Now I can communicate.

One voice.

I just want people to talk to me as a teenage girl.

There are thoughts in my head, buzzing around.

Give me time to get my message ready. 

Isolated and silent; this was life before I had a voice.

I make sure people listen to me.

Mattering, chattering, gossiping.

My voice is my power.

Now I can communicate.

One voice.

My voice is my power.

Now I can communicate.

One voice.

I have so many favorite things I like, I don't know where to start: my dad's BMW, spending time with friends, the feeling of the takeoff in the airplane, my dad's BMW, doing jokes.

I'm smarter than people say; I brighten up their day with my smile.

I said keyboards, not clean floors. I had a vision for my transition. Music composition was my ambition.

Who made the decision to put me in this position? There should be an inquisition. Ambition.

My voice is my power.

Now I can communicate.

One voice.

My voice is my power.

Now I can communicate.

One voice.

My voice is my power.

Now I can communicate.

One voice.

Once everyone finds their own voice great programs offer opportunities for purposeful communication with others.

Great programs challenge barriers and speculation in an effort to build inclusive philosophies, where individuals with and without disabilities learn and work together, so they can learn to live together.

Remember inclusion is not a class, or a placement...

Video:

What is inclusion? Inclusion is belonging. Inclusion is an attitude: a philosophy. Inclusion is not a program. Inclusion is a right, not a favor, not a trial period. Inclusion is a sense of belonging, being part of a community, and being valued and respected as a contributing member. Inclusion is accepting differences and responding to individual needs. Inclusion gives children the permission to be themselves. Inclusion facilitates positive social interactions. Inclusion offers opportunities and rewards for children with and without disabilities. When you are a child with a disability, what does it mean to be included? Inclusion means more than just physically being placed with typically developing children. It is not a place or a measured amount of time spent with others. Universally, it means belonging.

Inclusion is a belief system put into practice!

Video: 

Narrator: When you're talking inclusion, you're not just talking about meeting the needs of students with disabilities.

Man: Absolutely, our mission statement here is to help every child learn and succeed at high levels. And the majority of the students don't have a disability. There are 33% of the kids who do. We want every child to shine, to improve, and we have a lot of children here in this school who are doing quite well.

(music class- instrument sounds)

Teacher: "Keep going, that's okay. Very good. Alright"

Narrator: And what makes it work here?

Man: Education is complex, teaching is complex, it's like relationships and families and there is no simple magic. Clearly having skillful staff, dedicated, skillful, competent staff is critical, supportive families. I would say there are three kinds of exemplars, hallmarks of inclusion that are important. There has to be a high level of collaboration. A willingness of all the adults and children to help each other; to help everyone do their best. We have multiple adults in every classroom and people have different roles and responsibilities: a general ed. teacher, special ed., could be para assigned to one kid or work with lots of kids, their therapist, specialists, consultants, volunteers figuring out a way of orchestrating that everybody is working together, collaborating to figure out. Ultimately it comes to the commitment and the time to figure out the best strategies to help each child learn to succeed.

It brings excitement and vibrancy to the curriculum which is necessary for kids with disabilities but it is also very helpful and motivational for kids who don't have disabilities.

How will you work to create a culture, adapt instruction, and collaborate?

The purest form of inclusion is found in families...replicating it in schools takes pure and unconditional acceptance of all individuals...just as they are!

Great programs start with great early intervention and preschool.

Video:

Teacher: "What are we gonna pick here? Smile? You like that smile, huh? Okay."

Narrator: Students in Barbara Smith's inclusive classroom have a wide range of abilities and disabilities. Working from a basic belief that each child can be a productive, contributing member of the classroom, Barbara and her colleagues use technology to insure that all children are full participants in the curriculum, and that they have the tools they need to communicate with each other and their teachers.

Teacher: "In my classroom we have quite a diversity. We have 13 children. The ages range from age 3 to 5, turning 6, being early childhood. I have kids in here this year who have autism. I have kids who have strong language needs. I have physically challenged kids, and I have kids with medical needs and typical kids with no special needs.

I think by getting kids together and getting that inclusive or that integrated environment, takes some careful planning, and basically the first thing that I have done is looked at the classroom as an early childhood classroom.  So therefore the curriculum is geared toward the typical early childhood classroom. And then what I do is then modify it, depending upon the needs of the individual children, so then therefore everyone is a full participant in the classroom."

Teacher: "Show me that you want a turn. Okay it's Ricky's turn!"

Narrator: Let's take a closer look at Barbara's classroom. You'll see how the creative application of technology is providing the means for all children to succeed, both those with disabilities, as well as those without.

Teacher: "Gabriella wants to go play with what? A book?"

Narrator: At the heart of Barbara's approach is a shared classroom language. Communication boards with photographs or picture symbols provide the basis for children to make choices throughout the day. These are examples of low-tech alternative communication strategies.

Teacher: "All the kids can communicate, it's just that they're all going about it in different ways."

Teacher: "What do you want to put on Gabriella? Shoes?"

Teacher: "We have a housekeeping area that also is with dress-up, and what we have is lots of Mayer Johnson Boardmaker symbols that we have placed all around the housekeeping area. And the reason we've done this is because we want all our to be able to communicate to us what it is they want to do in the housekeeping area. Some of our kids love to dress up, but they're not able to reach into the bucket to get the clothes out that they want. So if we're able to offer them a choice of what clothing items they would like, then we're able to reciprocate and help them get the clothing that they want. By putting comments and descriptors and adjectives in there, they can then comment about how they feel about being dressed up. "

Narrator: Using these tools allows children to communicate what they want and don't want. It builds their independence while emphasizing critical self-determination skills. Sometimes the pictures are placed on simple switches, such as the "Big Mac." Teachers or peers pre-record corresponding messages into the switch.  When the child wants the object, they press the switch, as Martha does during a snack.

A small electronic device, the SpeakEasy, works in a similar way. This tool allows children to select from a field of choices by pressing the corresponding picture.

Teacher:  "Do you want to stop? Or do you want to do some more"

Child presses button that states, "I want a drink".

"You want a drink? Ok, then let's go get a drink then. Here, take your device."

Narrator: If children cannot use their hands due to physical difficulties, a Plexiglas eye-gaze board can be substituted. The child makes a choice by looking at the picture of the preferred activity.  The teacher or friend stands behind the board and watches to see where the child's eyes are looking.

With a shared language structure in place, students are now ready to participate in activities. Barbara uses developmentally appropriate practices in organizing her classroom curriculum.

Teacher: "In our classroom it's typically an early childhood classroom so you're talking lots of play centers and play-based activities. What we need to do is we look at our activities in our centers and we troubleshoot ways that all of our children can gain access into those play centers. An example would be the water table. Everybody likes to play at the water table, so if I have a child who is not able to get their hands into the water table, how am I going to get that child involved in that activity at the water table? The technology is going to give me a method to get that child entrance into it. "

Narrator: Lindsey and Ricky gain access to the water table by a hook up between a water pick, a switch, and an environmental control unit. This allows the water pick to be turned on by a single switch. This technology device enables children with limited physical ability to participate with their classmates not just at the water table, but in other activities throughout the classroom as well.

Teacher: "Alright you hold it, and Amanda why don't you open it."

Teacher: "We do a lot of cooking in our classroom, and one of the challenges is how are we going to get some of our kids who are physically challenged to fully participate in cooking. One nice device for us has been the pouring cup. We use a single switch and this enables all kids to use the single switch so that they can either pour with the pouring cup or they can reach out and pour with the actual cup. "

Teacher: "We have a bubble station that's one of our play centers in our classroom. Some of our kids are not able to get the blow out to blow a bubble. Some of our kids can pop to reach a bubble, but all of us can do something so what we do is use a lot of the voice output switches to comment and to describe or to name some actions so that if you put (lets' say) an action on it of pop the bubble, that child can give the prompt for another child perhaps to reach out and pop it, or a friend could blow the bubble."

Great programs should continue into primary and intermediate school.

In this video a variety of supports, services and environments are seen. Students with low incidence disabilities are very diverse and therefore, so too should be their educational programming.  Elementary and middle school programs should offer access to the general curriculum that is age and grade appropriate and should grow over time to include daily living, work and life skill practice, designed to match each students' unique transition plan.  During this phase of education, students should be practicing and performing skills that will lead to individual independence levels.  Instruction will be varied and offer a range from 1:1 guided practice to large group instruction where social skills can be targeted.  Communication skills should be refined and expanded to include interview/work skills; self-advocacy and social skills needed in the pursuit of daily living and leisure activities.

Great programs develop teens and adults who are self-advocates.

Video:

"Self advocacy has just been one step after another of me growing, and I'm still growing every day."

"Self advocacy gives people a chance to be able to grow and to know that if something would ever happen to mom or dad, you don't have to be dependent on strangers."

"Being a self-advocate to me means to be brave and to stand up and tell people what you want and how you want to live your life."

Narrator: Self-Advocates are people with disabilities who speak up for themselves and others. It means that although people with disabilities may ask others for support, they have the right to make decisions about their own lives without unnecessary influence or control by others. The self-advocacy movement is about making sure that people with disabilities are treated as equals, with the right to the same choices, responsibilities, and chances as everybody else. By having group meetings and holding conferences, self-advocates...

Self-advocates are adults like Mike Phillips who have grown into adults who are able to make choices for themselves.

Video:

Mike: "When I was a kid, I could sit up and drive a powered wheel chair. I could breathe on my own, so I played outside with my brother and neighborhood kids. Interestingly, technological advancements have kept pace with my disabilities. As it got harder to drive my chair, we got video games. As breathing got harder, the BiPap was invented. When I lost the ability to speak, software already existed to do the speaking for me."

Narrator: Mike has something called SMA: Spinal Muscular Atrophe. Used to be, kids with SMA as severe as Mike's didn't live past childhood. They didn't have the muscles to keep breathing. But now because breathing machines have gotten so good, for the first time kids like Mike can live to adulthood. So Mike is kind of on the frontier of figuring out something nobody's had to figure out before- how to be in charge of your own life: how to live as an adult with this disease.

Narrator: "So Mike told me that when we was 23 he decided that he wanted to paint his room for the first time. He wanted dark purple walls, black ceiling, and you were just like no, no way, this won't happen."

Mom: "To me it's like living in a room that dark, would've been really depressing. And I did not want to spend that much time in a room that I was going to feel totally depressed."

Narrator: So you sleep every night on the floor next to your 27-year-old son?

Mom: "It's survival. I mean there's always something that needs to be done. Adjusting his hand, his legs, turning his head, suction; it is a relationship of one person dependent upon another for every physical need."

Narrator: In the way that you would do with a small child?

"Right."

Narrator: So Karen and Mike are in this situation that would be hard on any parent and kid. Where she's never gotten a break from the most time-consuming child care, and he's never gotten a break from his mom.

Mike: "I don't think there's any way for me to say this without coming off as horrible, but I'll say it anyway. As a kid it's fine having your mom around all the time.  As a kid I wanted that. And my mom is an amazing person who's taken care of me my entire life: she's kept me alive. But I guess it was in my early 20s that I started feeling really restless. I knew I wanted more out of life; that I didn't want to watch TV with my mom forever. I started feeling like a typical disability cliché and it bothered me. I guess I wanted to live like Brian, my brother. "

Brother: "I think if you're around anybody 24 hours a day, 7 days a week, you're going to need a break sometimes. That's part of Mike getting frustrated, is Mike wants to go out and be independent and do things and she's like ‘woa, slow down' and he's like ‘no, I don't need to slow down' and she's like ‘yea, you kind of do, you have a lot of health problems.' If anybody knows how to take care of him best, it's her, but I think it's a strain on their relationship, and therefore they kind of clash."

The way it always worked, and Mike and his mom both describe it this way, is that Mike always gave in to Karen: on what he wore, on how the ceiling would be painted, and whether he turned of his stereo and let her watch CSI. Until finally, about a year and a half ago, he stopped giving in.

Mike: "Nobody ever wants to say to their mom at the age of 54 ‘sorry mom, this isn't working anymore.' But I posted an ad on craigslist and a few days later I hired my first assistant.

Assistant: "You want to paint your nails now? Are you done? You have any last words? So what book are you reading? You want to do the alphabet? Okay. A, B, C, D."

Narrator: Celeste wasn't Mike's first part-time assistant. In fact these days they're more like friends. Mike pays for his assistant from money that he gets from the state, which pays for everything in his life.

Mike: "I start to realize after years of being bored, years of being afraid to rock the boat, that other people can take care of me. I go to movies, coffee shops, I paint my nails black, I get my first tattoo, I go out and try on shirts with somebody who isn't part of my family, who doesn't say ‘do you really want to wear all that black?' Paid assistants don't question anything. Not the clothes, not the nail polish. I feel good enough to do anything. I post more ads on craigslist."

Narrator: How'd you guys meet?

Girl: "Craigslist."

In an effort to develop self-advocates who strive to reach their full potential, great programs start early in the transition process using a variety of formal and informal transition assessments that build unique learner profiles that lead to individualized transition goals, plans and curriculum.

The type of tool you use to gather the information depends of what you need to know about the student.  A formal assessment will likely result in a score.  For example, a formal on-the-job evaluation may be needed when the purpose is to determine if the student is working at a competitive rate, completing the job tasks at the same speed and with the same accuracy as other employees.

An informal on-the-job evaluation may be more appropriate if what you need is to know if the student has learned the correct sequence of job tasks, and speed is not a consideration. Informal assessment is essential to include in transition assessment.

Some youth will not be able to demonstrate accurately what they know and are able to do using formal measures so informal measures prove to be more useful in this situation.

Great programs help all people to find a career that matches individual interests, strengths and skills. 

Video:

Employer: "How many are you going to do today? Are you going to do the whole box?"

Narrator: This is a workday, a day in which hundreds of people with developmental disabilities learn and work in a joyous atmosphere. From students to senior citizens, there is great pride in what they and the staff will do today. The dignity of real accomplishment, adverting personal self-respect and a paycheck.

Employer: "Come on up and get your check!"

Narrator: For Joey and his workmates, payday is a real payoff.

Employer: "Just like everyone else, payday is special to people that we support. And getting that paycheck means that they have contributed and now they are getting paid for their work."

Great programs offer career skills training that leads to an individualized level of independence.

Video:

Narrator: If it needs stacked, sorted or shredded, Casey O'Mara is the man.

Casey: "I met Chris Filler, and Simon and Tammy."

Narrator: At the OCALI offices in Columbus, Casey is among the most devoted employees in the building. The building blocks to get Casey here were laid years ago. He was diagnosed with PDD-NOS at 4 years old.

Casey's Mom: "When he was diagnosed, I was working in an elementary school at the time and I knew, working with those kids, I was like ‘Casey's not going to be able to do this.' I didn't know what it would look like, his future."

Narrator: Casey finished high school with few social skills and even fewer prospects for a future.

Casey's Mom: "Casey was not going to get a job. Getting a job was meaning that he was going to grow up, and he did not want to grow up."

Chris: "What we know about people with autism is that they are very capable, but often times they need a longer period of time, not just to develop the skills, but to get comfortable, to understand the social implications."

Narrator: The staff at OCALI created a job skills training program for people with autism to learn and perform all aspects of employment. With Casey, the proof of its worth shows in his performance. From email to setting a timer, Casey follows a daily map of his tasks, typically without any supervision. The key is creating supports to help the employee succeed. Repetitive tasks and schedules create comfort and performance response in kind.

Casey's Mom: "In the last two years, he's become a man. Truly, he really has. I've seen it at home, his independence; I've seen his maturity, his growth. He's met all these new people here; he's taken directions from so many new people. The thing is, you have to find the strength of the child, not fit them in a mold that we have already developed."

Great programs prepare individuals for post-secondary options.

Video:

Narrator: The students are getting a lot of support. I mean it's a high touch program that they are getting a lot of individualized attention, so the students do get to interact very much with their instructors, ask a lot of questions, and get a lot of individualized support. We are really fortunate to have a fantastic group of instructors that bring a wide range of skills and knowledge to our students. We want them to have high expectations of our students and we want them to combine that with their knowledge and their enthusiasm for their subject to really bring the students along.  I hear every day from the students about how much they like the instructors and I think they really do form a good bond. Our classes are small so there's a lot of interaction between the instructors, and there are tons of social and recreational, cultural activities on and around the UCLA campus that students can really join in to. That is happening, we see that happen all the time. But within that, our students have kind of their own community of friends that they develop, which is what happens with people in a college setting. Often you meet the people that you're going to know for the rest of your life, and that leads to connections for jobs and other things. Those relationships last a lifetime.

Student: "I've made a lot of friends."

Great programs build skills in adults to learn to live independently and become part of a community.

Video:

Worker: "Okay, now what are we making?"

Ivan: "Beats me."

Narrator: The supermarket: for Ivan it's like a new frontier.

"I suppose as a 17-year-old I was kind of similar to Ivan in a way. I still was living at home, and very reliant on mom and dad's help for certain things, cooking being a main one."

"Let's get some more fujis. Good for peeling."

"Interesting, I've ever done peeling much before."

"You haven't tried it? Already we'll do it then."

"Alright, we'll do it just for the fun of it."

 "I definitely think I was probably a little bit more independent on things like that, but then again his disability is different to mine so it takes people different times to adjust to their disabilities I guess."

"Make sure you grab ones that are easy to peel."

"Well what would you describe as easy to peel?"

"Evenly shaped."

"Evenly shaped."

"It's quite an interesting experience. Cameron knew a lot more than I did. Cameron flats with other people now so he has to learn how to do things and cook things and stuff so I wasn't too surprised he knew more than me when we were at the supermarket."

"It'll be interesting, we'll see."

"We might just be eating partially peeled potatoes with bits of skin on them."

Narrator: It's no award-winning cuisine, but they're finding their own way around the kitchen.

"Well we're putting out the crumbs so we can just toss the chicken into it and crumb it. Just a brilliant idea, Cameron's idea. He can have that idea."

"We could peel first, because that'll take the longest. Sorry, refresh that, what are you peeling better."

"Ok, what am I peeling?"

"You're peeling pretty much everything because that peeler doesn't like me"

"This is going to be really interesting."

"Number of times I've peeled including this probably my second time, and I think it's only my second time because I probably gave up last time. Dinner could be quite late tonight."

 "Shut up!"

"You're making a meal of that man."

"I have to admire his perseverance with it, he really did give it a decent crack. It's a whole trial and error thing, you're going to find a way for you to peel it and it'll work."

"Pretty good so far, pretty good?"

"There's going to be no giving up here mate, we're not quitters in the Leesly Academy."

"Who said I'm in an academy?"

"It's kind of like ‘Police Academy".

"You're in my skiing academy tomorrow."

Narrator: Cunning Cameron has chosen the non-peel cucumber.

"When you go into like home and living places like that, they've got all sorts of home stuff, keep your eye open for stuff that may just be really helpful to you."

"Do you know how to crack an egg?"

"No I do not so I'm going to watch how you do it."

"Watch and try and figure out what I do because I don't even know."

 "Alright, let's see. I can't even crack it open."

"If you would've asked me a week ago to crack an egg for you, I would've said no way, unless you would've wanted the shell in with the yolk, because I would've not thought I could've done it. But I can."

"And no shell, so pretty good!"

"And no shells! Alright."

"And that was really exciting. That was exciting because I know that's one thing I'll be able to do when I move out and when I go flatting is be able to. I think that was just the edge of what I'll be able to do when I start cooking, so it was a really nice experience."

"Alright, so this is our Cam Dan supreme.

"My artwork in that looks pretty bloody good."

"I think so, I'm very impressed with how it came out actually."

What will your role be in enabling a dream to come true?

Video:

"I dream that one day I will drive a car, have an exercise video, and work on my book, Take the Challenge, Take the Risk."

"When I grow up I'll be a doctor, a painter, an actor!"

"When I grow up I want to be a vet."

"My dream is to represent the causes of people with disabilities."

"When I grow up I want to be the weather reporter."

"My dream is to go to college!"

"My dream in the future is to run for president."

Thank you for joining us today for the final webinar in our 4 part series entitled Low Incidence Disabilities: Access to the Curriculum.  Please visit our website to view this and all other archived webinars in the series along with professional development activities that accompany each webinar.

"Great programs recognize and demand purpose in all learning tasks so no time is wasted on meaningless, frustrating, energy draining activities that dead end once the work is complete. Great programs challenge barriers and speculation in an effort to build inclusive philosophies, where individuals with and without disabilities learn and work together, so they can learn to live together." This final segment in the series discusses great program features impacting learning and life for students with intense disabilities.