Transcription of the episode “Parent voice: Supporting families with special needs”

Transcription of the episode “Parent voice: Supporting families with special needs”

Amy H-L: [00:00:15] Hi. I’m Amy Halpern-Laff.

Jon M: [00:00:16] And I’m Jon Moscow. Welcome to Ethical Schools. Our guest today is Ellen McHugh. Ellen is regional program manager and regional coordinator for Parent to Parent of New York State. She’s also co-chair of the Citywide Council on Special Education. She’s the parent of a profoundly deaf son and has been a parent advocate for children with special needs for over 30 years. Welcome, Ellen!

Ellen M: [00:00:39] Thank you very much, Jon. It’s very nice to be here.

Jon M: [00:00:43] What is Parent to Parent?

Ellen M: [00:00:45] Parent to Parent is a statewide network of parents of children with special needs, a broad array. My son happens to be deaf. Others have children with autism, with cerebral palsy, with intellectual disabilities, with developmental delays and other more esoteric issues. We provide information and resources to families by telephone by egroup, by web page, by hook or by crook, and hope that we can provide matches, meaning that someone in Buffalo who has a child with a developmental disability and is 18 years old, wants to talk to somebody who has a child in a similar situation. And the person we have is in Schenectady or on Long Island. Some of the more difficult disabilities to match take a little bit longer. And we’re part of a national network, Parent to Parent United States. And there are, I think now, about 38 states with Parent to Parent affiliates, including Alaska and Hawaii. Normally we meet every two years, this being the second year. We’re not meeting. We may do a virtual meeting, but everybody’s scrambling as best as they can. 

I just want to remind everybody that these are my own opinions. They don’t represent the opinion of Parent to Parent of New York State, or of the Citywide Council on Special Education.

Amy H-L: [00:02:25] Ellen, one of your opinions is that educators too often use a deficit model in thinking about a child with a disability. What do you mean by that? 

Ellen M: [00:02:37] Well, the Individuals with Disabilities Education Act requires you to recognize deficit either in speech, language, acquiring knowledge, walking, talking, self skills. That mindset has become, “Let us check and see why he can’t do or what she can’t do so that we can justify the provision of services.” It’s almost the “you have to fail before I can help you” approach. It was very much like that in the beginning, but parent activism and also teacher activism, therapists who are more woke, to use a current phrase, advocated with the federal government to change that deficit model so that you didn’t have to fail to get services. But you still have to qualify to get services. And that means that you have a problem — seeing, speaking, hearing, walking, talking, or self care, and it affects your ability to learn. So all the way around is saying, the history has always been, what can’t you do instead of what can you do. It’s going to take a generation, says me, to change that. I think people are at that point where they’re realizing you can’t spend your life in a deficit model.

Amy H-L: [00:04:08] Ellen, how does that impact how these students are taught?

Ellen M: [00:04:14] Well, there’s supposed to be modifications and adaptations made to every student’s curriculum to allow him or her to learn at his or her own pace and in his or her own abilities, within their abilities. So, my son, as an example, he had a five to seven year language delay. The most important thing for him to be considered age appropriate or on grade level was to bring up his language. But at the same time his disability, because that’s what it is, it’s a disability under the law, prevented him from acquiring language like other kids did. So you have this sometimes odd balancing act that you have to do. You have to recognize that the child is at a deficit level. You also have to, in my opinion, believe that the child can be raised to his or her age appropriate language level in his way. So the hard part was to keep working on both sides, addressing the deficit and honoring the growth. So our strength or change, however you want to say it, but we were still looking at assessments and evaluations at the end of the year that were based on what a typical, age appropriate child acquires. So the comparison existed even then. And he did make great progress. Even if he did progress, he was still a year behind, maybe. As he grew older, especially in high school, when language becomes even more complex and difficult for kids to use or understand, maybe two years behind, the balance of honoring what the growth is and respecting the need is, it’s hard to, it’s hard to describe, but it’s also the crux of the matter as far as I’m concerned.

Jon M: [00:06:18] You’ve said that beyond focusing on the specific disability, that too often educators don’t look at what else a child can do, what they’re like as a whole person, that it  sometimes becomes the disability defines the child.

Ellen M: [00:06:39] Sure. large bureaucracies, in order to make things shorter, so you don’t have to say, oh, that child who has a severe to profound collateral, sensory neural hearing loss says, oh, that’s the deaf kid. Or that’s the sped, short for special education. For a long time. I didn’t, and I have good hearing, for a long time, I thought they were saying “that’s the spud.” Just for clarity’s sake, my full name is Eleanor Bridget O’Shea McHugh. You know, one of the things that people often associate with an Eleanor O’Shea McHugh is a potato, otherwise known as a spud. And it was like, I hope that’s not where you’re going. But you know, it’s an easy way, to slot, to align, to put into a box, if that’s what you want to call it. It’s not very fluid. 

Yes. He is deaf and will continue to be deaf all his life unless he’s struck by lightning and a miracle occurs, but he also had other talents. He was very capable as an athlete. I mean, really even, you know, parents happened to be easily impressed by their kids’ skills. But he was recruited for the New York State games. He was recruited for one or two colleges cause of his baseball. The ball would just hop off the bat. You could see it, but no, that was a talent that he had that allowed him to enter into the social world that was high school. Kids knew him in two ways. He was the deaf kid , you couldn’t ignore that, but he was the deaf kid who played baseball. He was the deaf kid who had three letters. So he lettered in baseball, soccer, and in basketball. And I have to tell you, Rocky is short. He’s five foot seven. So lettering  in basketball was a very big surprise to all of us. But anyway, the kids knew him in a different way. Other thing the kids knew was that he could draw, he did great characters. He still does them, for his own amusement, not for anything else. So he was the deaf kid who was in my English class who played baseball and could draw. There were four layers to this child. To the person who provided therapy, and I am not looking to say they were mean or cruel, but to the person who provided the speech and language therapy, he was the deaf kid.

Jon M: [00:09:18] You’ve described lack of respect given to parents as a big problem. Can you elaborate?

Ellen M: [00:09:24] It’s a double edged sword. There are times when [inaudible], especially in the beginning. You’re still sort of dealing with the shock or the loss of aims and hopes. You know, someone’s told you either at birth or later on there’s something wrong. They haven’t said there’s something “right.”  They’ve said there’s something “wrong.” He doesn’t hear, he doesn’t walk. He’s developmentally delayed. She has Down Syndrome. And there is this expectation that, you know what that means when the baby is handed to you. You don’t. So rather than trying to explain it to you, because people in hospitals or therapy sites, they all have their own approach to how to work with the family or how to draw a family out. They’ll say, “here’s your deaf child. What do you think we should do?” Which is really nice in one end. But at the other end, it’s like, I’ve never had a deaf person in my family. So then they say, “well, you know, have you ever found out about this disability?” And you go back to your parents. My parents were immigrants. And I said to them, you know, Ma, Pa,  anybody deaf in the family? And my father said no, but he had an uncle who got hit the head. He was little, he doesn’t look different. Daddy. That’s not what I wanted to know. But my mother-in-law told me, you know, John, that’s my husband, he always had terrible ear problems. When he was a kid, we were always taking him to the doctor. Oh, this is, this is not, this is not in your problem. It’s not a knock in the head. It’s, it’s a permanent issue. So you have that juxtaposition. People expect that you’re going to find out why your child is developmentally delayed. Did anybody in the family have Down Syndrome? Did other people have children with special needs? It all comes up. Any number of, you could say avenues to explore your history, but you could also say wounds.

You get into early intervention. You get into the Committee on Preschool Special Education. You get into the special education committee. Everybody has the same question. “Could you tell us, Mrs. McHugh, what happened? Could you tell us, Mrs. McHugh, what happened?” By the third go round, I was like, “no, it’s right there. It’s in the paperwork.” “Well, Mrs. McHugh, what do you do at home?” “Well at home, we do things we do at home. You know, we try and develop his language. We try and get him to use his medial k’s and his final s’s.” We learn the lingo of developing language, but we don’t necessarily learn the lingo of getting people to respect us. Because when you still walk into that room, whether you’re discussing the medical issue or the education issue, there’s six, eight, 10 people there. Everybody’s got a title, everybody’s a doctor or a therapist or a speech and language person or the IEP teacher or the specialist in this and the specialist in that. Everybody’s got tons of paper in front of them, piles this big, by the time you’re in high school. And everyone still looks at the parent and says, “hello, mother.” I’m not your mother. I  don’t want to deal with the issues you had with your mother. You can call me Ellen. You can call me hey you. You can call me the Wicked Witch of the West. You can call me Mrs. McHugh. But please have the courtesy to ask me how I want to be addressed. This especially works out poorly in communities of immigrants. Many people come here and the only thing they have is their Mr. or Mrs. No, it’s really not appropriate to call somebody poppy or mommy. Better to call them by their names and then ask them for information. What does your child like? How does your child interact with other children? What do you think would be beneficial to work with your child? Does your child like colors? Does your child like music? How do you get to your child when your child is craving attention from you. And not just food and pretzels. What do you do with your child? What do you know about your child? What can you tell us your child does? It’s not often that those questions are asked.

The processes is you sit down, people introduce themselves, and somebody reads the psychologicals. Somebody reads the educational. Somebody reads the speech and language. Somebody talks to you about OT and PT. “Do you understand?” By this time, of course, it’s like, um, Charlie Brown’s teacher, all you could hear is wonk wonk wonk. Because the first words out of everybody’s mouth are we’re here to discuss your child who has a long list of deficits. That’s a long way, I guess, of saying even though the IDEA insists that the parent be a full and equal participant in the creation of the IEP and the selection of placement and program, and that the Department of Ed, whether it’s in New York, New Jersey, or California, is required to give you the information to help you make an informed decision. There’s no, yes, peaceful way to say this, except to say that it’s an information dump and you’re expected to plow through it on the spot right there while you’re discussing something that’s going to impact your child for the next 10 months.

Amy H-L: [00:15:35] So these relationships were already strained. How has the shift to remote learning because of the pandemic affected the relationships between teachers and parents, and also the students?

Ellen M: [00:15:52] A realization about how hard teachers work with students and how how parents work with students. There’s been a recognition on both sides that being one-to-one in front of the computer, especially for some children who require assistance, has created conversation between the family member and the therapist. When the therapist says, “you know, I need you to put your hands over his hand,” or when the therapist says,” I need you to use manipulatives, do you have blocks in the house?” Or when the therapist says to you and to the child “oh, wait, that was great. You got your medial k’s and your final s’s out. How are we going to do this so that you can say the word truck when you’re not in therapy.”

It’s also been difficult for those kids who are little, the little ones really. They can’t spend their time focused like that. It’s hard enough when you’re an adult, but now you’re three or four, five, maybe even seven. And you’re looking at a screen and it’s really not moving. It’s not anything like you expected. It’s somebody talking to you. You don’t remember the, it was an old TV show called Max Headroom. It was just a head that would pop up and talk. And that’s kind of what happens. Not all the time. I think that the teachers, the staff have made great strides in personalizing things, things they never thought they could do. Most staff would never really be interested in assistive technology when they had a class of 26 kids. Now you talk assistive technology and everybody wants to know what are you using. Are you using an iPad? What device are you using? Do you like Samsung or do you like Google Classrooms? People are much more aware of what assistive technology can and should do. Even with children who are, have dyslexia, enlarging the letters on the screen and creating different setups for paragraphs is so much easier when you can do it on a computer and keep it instead of having to do it individually every time so that the child can concentrate on the words or there isn’t so much distraction. One of the classic things about dyslexia, supposedly, and I’m not an expert, it’s better for a dyslexic child to have a light blue background and black letters rather than black and white because black letters sometimes look like chicken scratch. This is an old, an old example, but it’s still an example of how you can take a look and adapt the background of a piece of paper or the color on the piece of paper so that the child can concentrate more than he or she would before, or that math example, you know, it’s a whole lot easier for a child who has dyscalculia to look at a math example on a computer, see the lines, see the way things should lay out. So when you’re writing it yourself and you’re dysgraphic, you’re all over the sheet of paper. It’s not a cure, but it certainly has allowed people to be much more flexible about assistive technology.

Jon M: [00:19:43] By law, students with special ed needs have Individualized Education Programs, or IEPs, which outline the goals for the student during the year and the special support the student will receive in order to achieve them. With schools being remote, many of the services for children with special needs have been modified, and the document describing these modifications is called a Program Adaptation Document. What should parents do when they receive one?

Ellen M: [00:20:11] The first thing they should do before they even receive one is recognize that they’re going to have concerns because on each IEP is an area for parent concerns and it must be, filled in is the worst phrase I can think of, but there must be the question asked of the parent, what are your concerns? And those concerns must be listed on the IEP.

So I’d get out my IEP and I’d look at the Program Adaptations Document and I’d check, am I getting an ICT class? What’s the class size ratio? 

Jon M: [00:20:48] What’s an ICT class?

Ellen M: [00:20:50] An integrated co-teaching class. So an  integrated co-teaching class is made up of. 60% of the students on a grade who are general ed and 40% of the students on a grade will have IEPs. In front of the classroom are two teachers, one licensed in K-7  or 6-12, but a licensed teacher and one licensed in special education. The thought  Is that the two of them can work together to address both groups in the class.  Because a special education teacher might have a trick of her sleeve that she could use to help the general ed teacher or the special education teacher may not know the curriculum, but the general education does. So you can, you have to live in each other’s pockets is the only way to say it. With class size ratios though, there are no limits after eighth grade, seventh grade, I believe there’s really no class size limit except that which is required by union contract. So you can have a class of 35, 36, 37 students. And you would have that class size ratio of 60-40.  The benefit is that research has shown that for both types of students, special education and general education, special education kids are exposed to age appropriate curricula, age, appropriate language, age, appropriate, social interactions, and general education kids can benefit at times from the for lack of a better phrase, trick that the teacher knows about how to elicit language or how to improve math or how to adjust the paragraph so that a child who doesn’t have a good language background can understand what’s in the paragraph. Are you an oral learner? Are you a visual learner? Are you a kinesthetic learner? All of this is part and parcel of what the two teachers help to address. It’s not a cure all by any means because you still need specific techniques to reach, say,  a child who’s deaf. Yeah. Or a child who’s blind and you still need experience.

Jon M: [00:23:26] So I was going to say, thank you for that explanation because it’s like really important and it gives people the kind of background they need. But you were starting to say about the ICT because you were saying that when a parent is looking at what’s proposed in terms of the program adaptation and you go back to looking at the IEP to see what concerns you have, because for example, you might. He’s supposed to be getting an ICT class. So can you pick it up from there? What would happen when the parent is looking at the IEP and then looking at the proposed adaptation?

Ellen M: [00:24:01] In this instance now, the parents would really be like a detective because if they’ve chosen blended learning, two days in three days out, they’d have to take a pretty hard look at how that ICT class or any other, whether it’s a small group class,  self-contained or just a general education class would address the child’s related services as well as the education piece. So, are you going to get in-person related services or is it going to be remote related services? Your IEP calls for five days a week of speech and language. You’re not going to be in-person five days a week. How is that speech and language going to be delivered on the other three days when you’re in remote?

The DOE has been struggling at this point now because when you break down these classes so that you could do the social distancing, if you have an average class size of 26 to 28 children, say, at the third grade and families have opted both for blended and remote, you have to sit down and figure out where are we going to seat these children? We’ve got to do our six feet. Where are we going to provide these children their related services? Is it in a separate room? Is it in the room with everybody else? If you provide the related services in the room with everybody else, does that pump up the numbers? So you can’t have more than 11 children, 11 people in the classroom. You’ve got the teacher and you’ve got 10 children. The related service provider comes in now you’ve got 12 people in the room. Does that change the rat? Does that change the exposure? Does that change your way of working with the children? Because now you have this extra body in the room. And when do you have this extra body in the room? So say you’ve got, like you said, 10 kids, three of them get different related services. One gets OT, one gets PT, one gets speech and language. Are those OT, PT, speech and language people going to be in the classroom at the same time, delivering in-class services? Is the child going to be taken out of the classroom to walk down the hall to go to another room where he or she would receive the services, either one-to-one or in a small group?  You’re going to have to be very good trusting. And I believe that most people do trust and I believe that most people are doing the best they can. But if you can, you look at your IEP, you look at the remote learning plan or the PAD as they’re calling it now, and ask to walk through the building, make an appointment, say, “I need to see where my son or my daughter is going to sit. I need see where my son or my daughter is going to have related services.” ” Well, you know, Mrs. McHugh, he’s only going to be there two days a week.” ” I know that, but I still need to see it.” It’s almost kinesthetic learning. I need to see it, feel it, touch it, know it,, because this is my child whom we have all agreed needs,specialized services. Like the law says I’m a full of equal participant in the development of the IEP and the selection of placement and program. I need to make an informed decision. I need to trust you as well as you need to trust me that I am a full and equal participant in this. I know I’m beating a dead horse by using the full and equal participant lingo, but that’s in the law and people should know it.

Jon M: [00:27:47] So let’s say the teacher will send a parent, a proposed PAD. And then the parent may have concerns and will say, “I’m concerned about this,” or “I want to see the classroom.” I want this, I want that. So then what happens then? Does the, am I correct that the system, if you will, must have the parent’s agreement in order to implement this, or if there’s a disagreement, then it can go to a impartial hearing and so forth. But basically that it cannot be implemented without the parents’ ultimate consent. Is that, is that accurate?

Ellen M: [00:28:26] Parent consent is usually given the first go around, right? So the child that’s identified at four and the parent signs a consent form for evaluation and assessment. And then the parent signs another document, the IEP, when he or she agrees with the education program that has been laid out. If there is a major change, a drop in service, a drop in the  placement, a change in placement, going from typical class to a small self contained class, all of that requires the parent to come in and agree.

Jon M: [00:29:05] And so that would apply to the PAD as well?

Ellen M: [00:29:09] To my mind, yes. And to most people who are doing advocacy work, yes. Because the way the DOE has set some of these things out, there’s always a line “or as best as we can,” or “as circumstances permit” or “as resources allow.” So what we, all the DOEs are, not just New York City, all of them are running up against a shortage of providers, a shortage of staff, a shortage of paraprofessionals that are in some classes are mandated. You’re looking at working two days at the school full time and three days at home. School teachers in the school don’t necessarily have the flexibility to do the remote learning because you’re in group A. Group A goes in Monday, Tuesday. They have teacher D and E. Teacher D and E then have another group Group B on Wednesdays and Thursdays. They have to be with that group. So they can’t be the same people providing the remote learning. And I don’t know that this is a resolution. In some states they have put in wide lens cameras so that the teacher is always on camera all five days that he or she is in the classroom. And when the kids go home, they just turn on the camera on their computer, and it’s as if they were sitting at home watching. In New York City, to the best of my knowledge, they are not doing that. Rumor has said it’s because of contractual issues or parents don’t want their children to be on a camera, it’s intrusive or there’s privacy, or it’s just too darn expensive because we are the largest system in the States. I don’t know if it’s in the world, but certainly in the States. So you’re going to have, we’ll have someone who is doing the remote learning three days a week. And that someone has a lot to handle, which it looks like, although I think that the DOE might try to address it is that someone will be the only one doing remote. And remote is hard. You don’t get the reaction. You don’t necessarily see you see the face. You know, staff had a a very quick and very hard learning experience. They got put on a horse and told to ride it. A lot of staff took off over the summer, which is not a bad thing either, so now they’re coming back and having to look at their skills again, look at their coworkers, and some hints, I guess, would be a better way to put it. So, and they’re all under tremendous pressure to do, to perform, to be as similar as they can be if this was not a middle of a pandemic. It’s a hard thing to do, no matter what. And now you’re talking about 1.1 million children. I don’t know. I I’ve heard 84,000 staff members, but I don’t know if that’s right.

Amy H-L: [00:32:30] So in addition to giving parents the information that they need to make informed decisions about their children’s education, what kinds of supports would you like teachers to give parents during the pandemic?

Ellen M: [00:32:45] Me? I wanted the teachers to teach four days a week and to spend one day a week with the family. That was my suggestion that, you know, everybody looked at me cross-eyed, but I think now people are beginning to realize this because their experience teaching via remote learning and having to work with the families because, you know, I know my kids, I would have had to drag them over and nail them into a chair if they were home. You know, you’re home. You’re distracted by everything. I work from home and it’s still easy to be distracted. You have to say, no, I’m not going to do the laundry. No, I’m not going to make a sandwich. Now you’ve got kids, and they don’t even have the theoretical control that I as an adult am supposed to exert. So that was my thought, that the teachers should teach for four days and work with the families on the fifth day.

Jon M: [00:33:42] That makes a lot of sense.

Ellen M: [00:33:44] I thought it did. And of course there were a couple of people at the union that did. But most of them were like, “are you nuts? They’ll never let us do that.”

Jon M: [00:33:55] So New York City Department of Ed has a separate school district called District 75 that serves students with severe disabilities from all over the city. It includes some school buildings and then some sites that are co-located in buildings with other schools. What structures, if any, are in place for collaboration between co-located sites and the other schools in the buildings?

Ellen M: [00:34:21] Good will is usually the structure. There are 59, I believe, self-contained District 75 buildings and over well, depending on who you talk to, with anywhere between 320 and 350 offsites. So an offsite can be as few as five classes and as many as 10 or 12, you know, depending on where they’re located, how big the building is, what type of special needs are there, but principals are only required to have a building team if there are three or more schools in a building, or if a general ed building and a charter school are located in the same building. So if a general ed school and a District 75 school are located in the same building, there’s no requirement for those principals to talk to each other. There’s no requirement for those principals. There’s the generic ethical requirement to plan because you want to be able to use the gym collaboratively, the library, the lunchroom, other classrooms, the art room, should it exist. But there comes to us, the Citywide Council on Special Ed, what comes back is the struggle to program. And granted, the struggle to program is really based on numbers. How many, if you got 1700 children in a building and 10 classes of kids with special needs, so maybe 120, you’re looking at a lot of kids to handle, to get in and out of buildings, to give lunch, and to provide with all of the other things that make school a school , afterschool programs, plays, assemblies, fundraisers, PTA. The unfortunate part is because it’s considered a separate district, there a two funneled lines. So you’re a child in PS yada, yada yada, and you have a speech delay. You get speech and language from a district supplied person. You’re a child in District 75. You have a speech delay, you get speech and language from a District 75 supplied person. Neither person can cross that divide. So say you were short of a speech and language person for three weeks. The District 75 person can’t handle the district-based person.  The district-based person can’t handle the District 75 person. It’s a tremendous waste of resources and it’s a divide that then spreads itself throughout the school. Those kids are on the fourth floor. Those kids are on the second floor. Those kids are downstairs. Those kids, they don’t have lunch with us. A classic example is Stuyvesant High School for all the yelling. They have a small District 75 program. They also have an accessible pool. The kids in District 75 have never been in the accessible pool even though one or two of them were there [inaudible} use wheelchairs. 993 is located at Frank Sinatra. They did not want to give the students in District 75 students, a Frank Sinatra diploma, because after all they weren’t our students. In another school,they didn’t want to allow children who were able to participate in a sports team to participate in the sports team because after all they weren’t our children. It’s an unfortunate division created artificially by funding.

And I understand what the District 75 people mean when they say we have tremendous talent and we need to make sure that our children are well educated. So we need the control of our funding so that we can have, we can plug a hole here or provide something there. But at the other end of it is there’s no, for lack of a better word, cross pollination, and the folks in District 75 have some tricks of the trade that they could certainly give to the general ed teacher and the general education teacher in PS yada, yada, yada could certainly expose the folks in District 75 to the standard curriculum, even if it has to be very dramatically adapted for the District 75 child who’s reading at a first grade level. It’s still not a bad idea to expose them. Well, I understand the funding issues, but I still can’t imagine what that looks like, the message that that gives to children, you know, when they’re segregated in that way, the kids will tell you, “no, I’m not one of them. That’s not my school.” All right. I’m just going to use the number because it comes to mind. I’m at 993. They’re in Frank Sinatra. We’re different. How do you cross that boundary without having some kind of school planning team, school cooperative team, principals talking to each other, a more proactive co-planning. And I know I sound like I’m wearing rose-colored glasses. But maybe this pandemic has forced people to look at how they can cross those divides and how they have to plan, how they have to be different than they were before.

Amy H-L: [00:40:21] Ellen, what would that proactive planning look like?

Ellen M: [00:40:25] Well, just use of the school yard. So, okay, there are classic examples. The kids from District 75 are on a different bell schedule. So they have to be in school, I’m just picking numbers, at 8:10.  The general ed kids don’t have to be at school until 8:30. So the general ed kids are playing in the school yard, for the most part, if they get to school a little earlier. Why is it the District 75 kids have to be led into classrooms? Why can’t the bell schedule be the same? Principals say, and I understand what they’re talking about, when you’ve got these schools, you’ve  got 400, 600 kids coming into a building. You have to use all your entrances, but why is it only the District 75 kids go in that entrance? Well, you know, they use wheelchairs. Yeah. Well, you know, people stand on the corner at the curb cut and see somebody use a wheelchair. They step on them then? Well, they’re blind. They could trip and fall. Children trip and fall all the time, you know? The one place for kids to get to know each other is usually on a play yard or the playground, or however you want to describe it. 

The other thing is probably lunch. Granted, you would not want to overcrowd your lunch room, but at the same time, there’s absolutely no reason why you can’t have a mix of kids together. We talk about diversity and we talk about respect for all, and we talk about excellence for all. And you forget that that disability is a diversity and I’m not looking to be trite, believe me, but disability is part of the diversity issue here. So you don’t hear like other people do, or you don’t read like other people do. Why do you have to go in a separate door? Or why do you have to be on a separate class schedule? There’s still stories in the paper about, oh, well PS yada, yada, yada had a school fair, but the District 75 kids weren’t allowed to attend, or you have gifted and talented programs. In  my own home district, there’s a building that’s full of gifted and talented kids. When they decided that they were going to include some kids from District 75, the building went berserk.  Staff, parents, principals, “They’re going to pull down on our scores. They’re not going to be part of our community. They don’t come from our community. They’re going to be bussed in here.” It was  a junior high school. Everybody was being bussed. Not everybody came from the community. Not everybody had the same reading and math level either. So people had to say to them, “oh no, no,  District 75 kids are not included in reading and math scores because they can’t do it.” You know, it was like a, it was like somebody hit you in the stomach.

Jon M: [00:43:39] So a lot of what you’re describing in terms of this sort of resistance to students with IEPs  being included as one of our kids, rather than one of their kids, just is unethical. What kinds of things. I mean, you’ve mentioned some specifics, but what would be some of the things that the Department of Ed and, for that matter, teachers and school people in individual schools and parents. What can people be doing that would lead to more ethical treatment of students with disabilities and their families? What are some of the things that you’d recommend?

Lay down your prejudices, lay down your arms, lay down your pencils and look up and see these kids that come in the door. About eight years ago, the Feds came down on New York City very hard for the number of kids that were in self-contained classes in districts, not only District 75, but in districts. So something called a New Pathway to Success was developed to integrate children who have an IEP into typical school buildings. In some buildings, people actually said, “well, what the heck? Let’s give it a go.” You know, in other buildings, the reaction on the part of the staff and community was “no, no, no, they don’t belong here.” Part of the problem was there wasn’t an explanation when it was first implemented, it was only supposed to be kindergarten and first grade, sixth grade in junior high school, ninth grade in high school, but nobody communicated that effectively with the schools. So entire schools thought that they were going to have to develop integrated co-teaching classes on every level by September X. That’s not what it was. It was the entry class, the entry level classes were being worked on to include or integrate, however you want to call it. So now we’re about nine or 10 years into it. One of the positives that has occurred is an increase in reading levels and then increasing graduation. They are nowhere near where they should be, but there has been a noticeable increase in reading and math scores and in graduation. But you know, the other end of that argument is if they’re still below grade level, are still below average, what are we doing to raise those things? And I think this is my opinion. People have become complacent. And again, I’m going to say this, this virus may have shaken people right down to their very toes and forced them to look at different ways to educate all children. I hope, it’s my belief, most people are ethical. Sometimes they get lost. And other times, you know, this is the system, huge bureaucracies just move along. People at this level say great things and somebody who’s teaching a second grade class, well, hasn’t gotten the resources and hasn’t seen a supervisor for a support service in three weeks. I haven’t got the heart for all of the big words that people are using at the top level, when she’s seeing children struggling or working as hard as they can. And knowing that she’s doing her best, but she hasn’t cracked the code, feeling frustrated. So there’s tremendous lack of communication in the middle. Part of that lack of communication in the middle is the way bureaucracies roll out their latest platform or their latest innovation. They roll it out on paper. They don’t roll it out in discussion. People at the top create teams, they bring in their best. They sit down and develop this. They’re really pleased. And sometimes it is pleasing. And then they roll it out on paper and they hand it out. The principal says, “good grief. I’ve got another, they want me to change math again” or says to the teacher, “the way you were having everybody sit and read on the rug, we’re not going to do that anymore. You know, we’re not going to do rugs. We’re going to do frogs.” I’m being facetious, but they roll out paper and it’s well intended, but the people who are developing this paper are talking to themselves and they are saying the same thing to each other and after a while it rings a bell. And it sounds so good. You still haven’t said “Mr. or Mrs. So and So in the second grade, what do you think? What do you know?  What would you do?” You know, “Oh, well we want this child to have an integrated co-teaching class. Can, you can do this integrating co-teaching with age appropriate peers, having age appropriate social experiences, exposed to an age appropriate curriculum, and learning age appropriate language.” And if I was a teacher, I’d look at them and say, “what do you think I’ve been doing here?”

Amy H-L: [00:49:26] We certainly hope that the disruptions caused by the pandemic well lead to some more real listening. Perhaps the administrators will start listening to teachers and teachers will start listening to parents. And perhaps we all can start listening to students.

Thank you so much, Ellen McHugh.

Ellen M: [00:49:50] Thank you very much for being so patient and listening to me. Yeah.

Amy H-L: [00:50:00] And thank you listeners. Please subscribe wherever you get your podcasts and give us a rating or review. This helps other people to find the show. Check out our website, ethicalschools.org, for more episodes and articles, and subscribe to our monthly emails. We post annotated transcripts of our interviews to make them easier to use in workshops or classes. We work with consultants to offer customized SEL programs with a focus on ethics for school schools and youth programs in the New York City area. Contact us at hosts@atethicalschools.org or on Facebook, Instagram, and Twitter @ethicalschools. Our editor and social media manager is Amanda Denti. Until next week. 

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