Knowledge is power when advocating for school inclusion with David Lepofsky

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David Lepofsky, lawyer and disability rights activist, discusses how knowledge is power when it comes to advocating for inclusion in school. Understanding the system means parents can better navigate the issues and work with the school to achieve inclusion goals.

Let’s give a kid a shoe horn to try to fit their foot into a shoe that was never designed for their foot. That’s the basic approach to inclusive education in many school boards today, says disability advocate David Lepofsky. The education system classifies students as “normal” or “exceptional,” and if your child is exceptional, it can be an incredible challenge to navigate the systemic barriers that prevent your child from getting the most out of an education that was designed to serve “normal” kids.

What can parents do to circumvent these issues and get proactive about advocating for their kids’ needs when the system is practically inaccessible for anyone without a graduate degree in government bureaucracy? Lepofsky addresses the “shackles” that prohibit parents and teachers from coming to an understanding about kids’ needs, the insufficient bureaucratic oversight that leads to unenforceable special education policies, and the work that his organization is doing to try and help parents access the inaccessible. 

Your child with a disability deserves to succeed in, and enjoy, their educational experience just as much as any child without a disability. But how can you help them succeed when the system wasn’t designed for them? David Lepofsky addresses the systemic barriers that prevent parents from taking a proactive role in supporting their kids’ education and talks about what his team is trying to do to circumvent these issues.

What’s on the menu, and how can I order it? A chat with disability advocate and retired lawyer David Lepofsky about the ways the education system is inaccessible to kids with disabilities and their parents. He looks at Ontario specifically but also talks about more general barriers that are persistent throughout different regions and mentions a few ways Ontario-based parents, school administrators, and policymakers could benefit by paying attention to what they’re doing south of the border.

This month is Inclusive Education month in Canada and Black History Month in the US. It is an excellent intersection to help us think about inclusivity. In Inclusion Academy, Good Things In Life's monthly membership, we are covering IEPs – how to make them inclusive, equitable and help all students reach their potential. You can learn more and join us by clicking here.

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Genia (00:03):
Welcome to the Good Things In Life podcast. I'm Genia Stephen. This month, February is Inclusive Education month in Canada. Around the world, February is a significant month around, uh, for inclusive education because often this is the month where schools begin thinking about individual education plans and planning for the following school year. In Inclusion Academy, the Good Things In Life monthly membership, we're going to be working on IEP ‘s this year or IEP's this month for next year, as we think about how to maximize inclusion and really high quality curriculum based education for our kids with disabilities. If you're interested in participating in this IEP planning process and interested in having the support to think about what does a quality IEP look like for your child and how can we use IEP's to help further inclusion for our kids, then consider joining the membership. You can find out more at goodthingsinlife.org/inclusion.

Genia (01:15):
Today's guest is David Lepofsky. David is a lawyer. He graduated in 1979 from Osgoode Hall Law School with a bachelor of law and obtained his master's of law from the Harvard Law School. In 2004, he was appointed the position of general counsel, which in Ontario is the highest promotion for a lawyer outside of management. It's reserved for only a handful of the 2000 lawyers in the province. And it's reserved for the most senior counsel recognizing career achievement in handling the most complex work demonstrated diversity of expertise, creativity, professional leadership, judgment, and mentoring, and role modeling. David's a visiting professor of disability rights and legal education at the Osgoode Hall Law School and a past adjunct member of the university of Toronto faculty of law. He holds volunteer leadership roles in the disability community as the chair of the Accessibility for Ontarians with Disabilities Act Alliance. He's a member and past chair of the Toronto District School Board, Special Education Advisory Committee. And the Toronto District is either the largest or the second largest school board district in the country. He's also a member of the kindergarten to grade 12 education standards development committee appointed by the government to recommend reforms that tear down barriers impeding students with disabilities in our schools.

Genia (02:54):
David, thank you so much for joining me today. I'm really looking forward to our conversation and I'm grateful that you have taken the time to speak with me. So welcome and thanks.

David (03:00):
Thanks for including me.

Genia (03:05):
So David, you and I have overlapping networks overlap overlapping circles, although we couldn't figure out exactly where all of the overlaps exist when we were speaking the other day. Um, but we both live in Ontario, Canada. We've both been in the disability community and working on disability issues, you know, really our whole lives. And I wonder if you could start by just sort of introducing yourself, you know, not, not your bio so much as the, why do you care about this? Why is this been lifelong work for you?

David (03:41):
Okay, well I'm 63. I've been blind. I had partial vision as a kid and been blind my entire adult life, totally blind. I'm a lawyer. I call myself a recovering lawyer cause I retired five years ago and I now teach law part-time and I am a full-time volunteer disability rights community organizer and activist, and that's taken many forms, but from, uh, 1994 to 2005, I led the coalition that successfully campaigned for the provincial accessibility law in Ontario, the Accessibility for Ontarians with Disabilities Act or AODA. I now lead the coalition, the AODA Alliance, that campaigns to get it effectively implemented. In terms of what we're going to talk about today in terms of education I've had, um, other roles that, uh, tie into that. Um, in Ontario, every publicly funded school board is required to have a, um Special Education Advisory Committee SEAC or SEAC.

David (04:45):
And I've served on the SEAC for five years, uh, for the Toronto District School Board. Uh, that's Canada's largest school board. We have a quarter of a million students including, uh, in the range of 50,000 who have special education needs. Excuse me. Um, and finally, um, in this regard, uh, through the advocacy efforts of the coalition I lead, uh, we got the Ontario government to agree, to develop a new regulation. That's under development to tear down the barriers in the school system, facing students with disabilities. Uh, it will be called an Education Accessibility Standard, hasn't been enacted yet. Um, and, uh, under our legislation, the provincial government head to a point and advisory committee to recommend what that regulation should include. I'm on that advisory committee, it has a long name. It's called The Kindergarten to 12, uh, uh, Education Standards Development Committee. We're in the middle of developing recommendations, which I'm hoping early in the new year, will be out for public comment, uh, before we finalize them where we can get input from the public on what we're we're contemplating

David (05:58):
So through all of those kinds of things and a lot of other informal activity, I've been very actively involved in the area of community, organizing and advocacy for new laws, getting laws implemented and for policy reform. Now I want to just clarify one thing. Um, I'm not in private legal practice. So, um, sometimes people will tweet or email me looking to hire a lawyer, uh, or for a pro bono lawyer. And I'm not in practice at all. So I can't give advice on individual cases. So I ended up having, after I do an interview like this, having to sort of deal with a bunch of people, who've got serious issues and they're looking for advice and this I end up telling them all the same thing, which is you need to go to a lawyer. And unfortunately I can't be that lawyer.

Genia (06:50):
Right. Right. So thank you for clarifying that. So David, your, your work on removing the barriers to learning for kids with disabilities, the barriers to inclusion. I think that most people listening can think about what those barriers might be, but I wonder if you could talk about that a little, what are the barriers for kids with disabilities?

David (07:12):
I think too, it's a great question. Um, but to explain the answer, I got to pull back a bit from education for just a minute. And what I want to say is this, um, what we be pulled with disabilities face in the world around us, whether our disability is a physical disability, like people use a wheelchair or a sensory disability, like people like be replied or people that neurological disability like autism or a communication disability or mental health condition, learning disability, intellectual disability, whatever the disability may be. We in a sense all face the same thing, which is that we live in a world, which is largely if not overwhelmingly designed and operated on a pervasive, but ridiculous first principle. And that first principle or premise is that the world is for people without disabilities. We're either not there or we're not expected to participate.

David (08:07):
And so we find that the buildings we go into or want to go into the places where we want to shop and the goods they sell, the public transit, we want to ride the places of employment or the jobs that we want to take part in. Um, and indeed the education system are all designed on that first premise. And it's not because anybody sat down and conspiratorially rubbed their hands together and said, let's keep those people with disabilities that it's, uh, may not be conscious at all. They might not be aware of it until you pointed out. Often they're not aware of it, but it's still pervasive. Um, and so in the case of the education system, this, uh, is, uh, most clear when we realized that historically for years, for decades, um, the schools where kids are taught that is to say the actual buildings and grounds the equipment in those schools, the technology, the curriculum, the, uh, the teachers are all the, everything is designed on the premise that it's for people, uh, for students without disabilities.

David (09:16):
And that when the kids with disabilities come along, they give it a name, they call it special education and they may have special education teachers. And so on. Now there's been a move to try to change this for years, but it's largely been a rear guard battle. In other words, it's largely trying to get some of these barriers removed or figure out. Special education to me is a way of politely saying, let's give a kid a shoe horn to try to fit their foot into a shoe that was never designed for their foot. Um, and I realized we have a listenership from, uh, outside Ontario, not just in Ontario, but I want to give Ontario as an example because it's in a lot of ways, it's typical. In Ontario, this got crystallized in the fact that for years, decades, then they actually used terminology that, that expressed this.

David (10:12):
They, and they still do. They used to talk about the schools for, uh, serving what they call normal students and then the other kids were exceptional peoples. Now in Ontario, and this is deeply offensive by the way. I mean, calling some kids normal and others exceptional, you know, if you went to a workplace and said, well, we have normal employees and the, we have women you'd call that sexist. Right? Recent, we had normal employees. And then we had ones whose skin is white. You'd call that racist. Yeah. Well to have a, an education system that for years operated on the basis that we had normal students and then these other ones they're called exceptional peoples and they don't mean exceptional. Like they're really good or weird. And if you read the Ontario education act today, um, it still calls them exceptional peoples. And in common use in our education system, uh, the conditions cannot call the disability.

David (11:14):
It's called an exceptionality. I mean this language, and I don't want to preoccupied with language. I want to change systems and service.

Genia (11:22):
Right. Hallelujah.

David (11:24):
But, but, um, but the words here convey the message that is pervasive. And when I pointed this out to senior policy people in ministry and the ministry of education or senior school board officials, nobody disagrees. Uh, but, uh, I'll take it further. So when you start finding out that, you know, they're buying it to use in the classroom, but it's accessible. Or if, if you talk about let's promote inclusion of kids with disabilities in the regular classroom, but the regular classroom teacher was trained in an education system for teachers that assumed the teachers went down. One of two silos, went into one or two silos. They're either a general education teacher, meaning they didn't teach kids with disabilities, whether they were in a special education teacher, which meant they taught in a separate environment for.

Genia (12:17):
Only kids with disabilities. Yeah.

David (12:20):
For only kids with disabilities. And when you talk about let's move towards more inclusion, you get some teachers understandably panicking going, like, I don't know how to teach these kids. And nobody gave me the training and nobody's giving me the support. So nobody's giving me the resources and that's a completely understandable and deeply worrisome reaction. So the problem and the way I look at the overall school system, um, and any parents listening or educators listening, you could take what I've just said and transform it into examples that you've seen in your day-to-day life. What you end up with is a school system, which is overwhelmingly, designed and operated on this basis. And then it becomes shackles on the hands that are the get in the wave teachers who want to be able to teach all learners, uh, and principals who want all learners to succeed in their schools. But these barriers get in the way.

David (13:20):
So that's, that's the overall problem. Now then if you take a kid with autism, you can describe how it transforms into, um, specifics or a kid who's blind, or a student who's deaf, or a student with a learning disability or an intellectual disability or any other disability. They'll give you the specific illustrations of it. But, um, they're all just specific illustrations of what I've just said. And by the way, let's just add one more thing. And this is Ontario based in people listening elsewhere. You can decide how much this fits into your world. Everything I've just said is bad enough to be a formula for failure. Now that's not to say that all kids with disabilities fail, there are teachers and principals and parents who manage despite all this to succeed and more power to them, uh, and more credit to them. Um, but they're having to overcome this, uh, uh, these barriers and shackles that are making it harder for them to succeed, but there's something else that makes it worse.

David (14:28):
And what I'm now going to describe is absolutely undisputably true. Uh, but before a number of us started raising it with the government, nobody was even paying attention to it, or even thinking about it. What's that? The definition of special education or exceptional people in Ontario, which I don't think is unique to Ontario, but in fairness, I haven't gone out and researched it all over the place, it does not include all kids with disabilities, but it does include some kids with no disabilities. So when the government says, we've spent X amount of money on special education, and we've got all the staff for special education, not only are they dealing with the regime, that's kind of one collective corporate afterthought, how do we fit these kids into a system that wasn't designed for them? They're not even covering the right kids. Some are and some aren't.

David (15:18):
What do I mean? Well, for one thing, if you look in Ontario at the regulations and policies, not all disabilities are covered by their antiquated term, uh, exceptionality. And, uh, for example, a mental health condition is not covered. A student with a mental health condition is not considered an exceptional people unless it's their mental health condition leads them to be a, become a behavior problem. So put another way, you know, provide for their needs until they get so frustrated, they become a behavior problem. Now they're an exceptional people, now we meet their needs.

Genia (15:57):
Right.

David (15:57):
There's no,

Genia (15:58):
Maybe we meet their needs or maybe we just deal with the behavior.

David (16:02):
Right. Now I'm not saying those schools are interested in mental health,

Genia (16:06):
Ofcourse.

David (16:06):
but if you look at the special education bureaucracy, it's the way it's operated. It does not include that. As one example, I also said some kids who have no disability are covered by special education.

David (16:18):
Who's that? Well, remember I said that exceptional people means anyone who's not normal. Well, that includes kids who are gifted.

Genia (16:27):
Great. Yeah.

David (16:28):
Now let me make a couple of things clear. Number one, I totally support the idea of serving kids who are gifted and meeting their education needs. I'm not saying it shouldn't be met. And there are a number of, uh, kids who are gifted, who also have disabilities. Now my view is kids with disabilities need to have their disability accommodated under our anti-discrimination laws, whether they are gifted and have a disability, not gifted to have a disability wherever they are in the learning spectrum. And I agree that kids who are not gifted or who are gifted and having a disability should have appropriate educational programming for them. But right now, what the government does in Ontario is they create an education, a special education, budget, and bureaucracy, and it serves all gifted.

David (17:16):
It's there to serve I should say, all gifted kids and some, but not all kids with disabilities. So in the number of people they serve can include some kids who have no disabilities and they can leave out some kids who do have disabilities. That's crazy. Now let me, and by the way, if you think about it, the idea of lumping into one population, um, uh, kids who are gifted and have no disabilities and have them fight for the same budget dollars as kids who are deaf blind, or have multiple disabilities and other sorts of complex needs makes no sense as a policy matter. Now I want to again, make it clear in case anybody's listening, I'm not saying cut services or funding or supports or protections for kids who are gifted, whether or not they have a disability. I'm not saying any of that. I want to make sure they're properly served like all kids, but I'm saying we need a coherent system that serves all kids with disabilities and doesn't subdivide with them, or make them compete for budget dollars with any kids without disabilities. But that's just one more layer of absurdity. That's been built into our system for years. And if, if you go to anybody in, uh, policy people anywhere up the hierarchy at our ministry of education and say, why do you define things this way? No, nobody has a policy answer. Cause there isn't, it's just the way it's always been done.

Genia (18:52):
Yeah. Yeah. So I, so you're talking about budgets and policy and the way we define, you know, the way we define kids and

David (19:02):
The way we deploy services, because everything flows from that.

Genia (19:05):
Right. So interestingly, I was a couple of months ago in conversation, um, with some parents from the States and we were talking about one child in particular, who's very young, he's just coming into the school system. And we were looking at the IEP, um, documents in that state and the 504 documents in that state. And what I had never put together before is that it actually says, at least in that state, that the IEP is only for kids who can't access the general curriculum. So by just by definition, if a child is granted an IEP, the expectation is that they're not going to be accessing the curriculum in the same way as a student who might fall under the, you know rehab protection rights of the 504. It's just another example essentially, of how we create structures and systems that inherently, by the way, they're designed and by the, by the premises upon which they're based, create barriers to kids, even around there, you're talking, you know, in Ontario that the fine points that you're making are a little bit different, but we see this in systems all over the place, I guess is my point.

David (20:22):
Now, let me tell you that in the United States they have for years had a better due process, significantly better due process protection for parents and kids with disabilities. Because federal laws, since the mid 1970s under a law that used to be called the education of all the handicapped children act and later called the now called the individuals with disabilities education act or IDEA form is IDEA provides all sorts of protections that we don't have and that we need. And that means that our kids with disabilities and their parents, um, face greater levels of unfairness here institutionally. And let me just draw on this and make this, translate this into the practical experience appearance. So I mentioned before that I, uh, I'm on the Special Education Advisory Committee for the Toronto District School Board. I was chair for two years. Um, so while, uh, we, um, hear from lots of parents and we interact with senior, uh, school board officials, uh, and give feedback, which sometimes they listened to often it doesn't lead to, um, any actual change. Um, but we recurrently identified a number of recurring needs. And one of them is that parents don't even know too often, what options are available for their kids are there for actual placements or programs or services or supports or how to find out about them and how to pursue them,

Genia (22:04):
Or discern quality that's actually

David (22:08):
Before we even talk about discerning how, how good they are, how they're working. I mean, getting them at all or whatever. And, uh, and we knew this and I summarized it in a conversation I eventually had with the director of education for the school board. More than once saying that the trend district split board is reminds me from the point of view of parents, with kids, with disabilities as being like a restaurant that won't give you a menu, right? Like, how do I know what to order if I don't even know what's on the menu? And again, it's not a grand conspiracy, but I had a couple of volunteer law students go to their website and just pretend they're a parent with, um, you know, a grade 10 education, uh, you know, not with a, a graduate degree for university. When you pick a parent with a grade 10 education, go read the book and who doesn't know any special ed jargon.

David (22:57):
And they know their kid's having some trouble learning, uh, and, uh, and some trouble at school and to go find out what's available or who to ask and just try to navigate the website. And of course it, it turned out it was totally a base it's, it's a lot of jargon and it's a lot of technical terminology and assumes a lot of knowledge. And I don't think that that's unique to the Toronto district school board. We have an audit at all school boards for this, but, and then we went a step further. Uh, um, our special ed advisory committee did a parent survey online. And we heard back from, I think over 1500 parents just about what they, uh, how easy or hard it was to learn about and navigate the system. And we got overwhelming results that we, we shared with the school board and we made public on our website for the school board that show the parents, find it very hard to find out what's available and find it very hard to figure out how to navigate the system, where to go, who to ask.

David (23:58):
So what is led me to decide to do, um, earlier, uh, in the fall of 2020, uh, to help parents is to record a video, which is up on YouTube. And I hope you can share the link on your.

Genia (24:16):
I will. Yeah.

David (24:16):
And share the show notes and what I did in that video, I gave it as a talk at the law school Osgoode Hall Law School, where I'm a visiting part-time professor. But what I did is I'm really speaking to parents of students with disabilities who don't know any of the technical language, any of the legal machinery, and this is a useful at Ontario, but could be useful elsewhere. It's probably a little less useful to States because you'd want to know a lot about the U S legal protections that we don't have in Canada. But even then what I did, I haven't heard from any number of parents and been to any number of meetings where they don't even know the basics of how do I take on this system and advocate for my child.

David (25:00):
And I don't mean how do they fight in combat and, and, and, and that kind of thing, but how do I work with the school board? How do I figure out what to ask for? It's a system that provides my child with a shoe that doesn't fit and doesn't even give me the shoe horn. And I've got teachers who would like to be able to help, and principals would like to be able to help, but they don't know what to do. Um, and they're overloaded. Um, and this is before COVID, when you add COVID distance learning and social distancing, it gets even more complicated. How do I do it? And I offer practical tips to parents, uh, on how to figure out what it is to ask for how to present your requests, and if you're not successful, what to do next.

Genia (25:50):
Right. Um

David (25:51):
All short of going to lawyers that I always say, if, if you eventually need to take resort to that, you can, and you know, and so on, but I'm trying to give you the steps before that, hopefully that will resolve things for lots of people.

David (26:03):
Now, since posted this online, uh, about two and a half months ago, it's been seen almost 1100 times and I've gotten really, um, supportive feedback, both from parents and from educators. Uh, um, I talked to one principal who had sent it to all the parents in their school saying this is helpful for you. Now, what I'm hoping in Ontario, there are a third of a million students with disabilities, more or less. Um, I'm hoping our educational system sends it out to all of them. Not because I need people seeing me. Okay. That's not the issue. It's because I want information to be useful. I think this could help people make things better for their children.

Genia (26:53):
Hey, there, I wanted to let you know that Good Things In Life's monthly membership Inclusion Academy is covering IEP's inclusive education plans this month. We're going to be going through some expert presentations on creating high quality, high impact, inclusive IEP's. We'll be reviewing people's or people's kid's IEP's. And we will have a guest expert come in to provide some recommendations, some suggestions, some strategies around advocacy for getting an actually implementing high quality IEP's. If this is something that would be valuable to you, you can find out more and join by going to goodthingsinlife.org/join.

Genia (27:50):
Yeah. So, David, let me just, I just want you to pause there for a second. So I will, um, I will make sure that there's, uh, a link that people can, um, can use to find that video. So the link will be goodthingsinlife.org/david, just for ease. And then that will take you to the Osgoode law schools site, where David's recorded this video. And we'll also be sharing the audio on the podcast. So you can look for that as well. So, one thing I want to, I just, I I'm feeling compelled to talk about is that my experience now it's just my experience, but my experience is that it's not that parents aren't told what's available. Parents are told, they're just not told all of what's available. So very often what we're experiencing in Ontario and at their places is that parents are told, uh, a single, um, you know, a single segregated, special option.

Genia (28:51):
This is available and this is the right match for your child's needs. And your child is going to it's that whole special thing, special people who are especially trained to deal with your child's special issues in special places. And, you know, we've got this wonderful pro special program for your child. And so I wonder if you can, when you're talking about what people are, you know, making sure that parents know what it is, what it is that is available to their kids. That's not what you're talking about. Or I wonder if you could speak to that, like in broad terms, what is it that you think parents need to know about?

David (29:34):
I think people, parents need to know a whole spectrum of things they need to know for one thing, what different options there are for where the child can learn, what, uh, options are there in the regular classroom, what options are there in special education programs? What the differences are, what the strengths are or opportunities are, what the consequences are of going to one versus the other. I think they also need to know if you're going to go into either of them, what, um, learning supports there are, what assessment supports there are. If your child needs an assessment to help figure out what it is they need. Um, they don't know. And some parents know this, some parents don't, I'm not saying no one does. I'm saying the school boards and the education system does not make it easy to find out. I've talked to some who found it very easier to find out.

David (30:31):
I've talked to some at some school boards who make a point of, uh, for example, attaching, I'm going to use a word they might not use, but a system navigator to the family to help them figure it out. Others it's, it's, it's a maze, but what we don't have is a system in place to make sure it is consistently provided across the board. Um, I'm confident that parents who are more articulate, vigorous experienced in advocacy will get further than parents who are shy or don't have the time because of their they're overloaded as parents. And most kids with disabilities are at some point, uh, those for whom English isn't their is not their first language. It's going to be more challenging and so on. So, uh, but it's, uh, uh, it's just not a user friendly system. It's left for example, I know in the Toronto District School Board is doing example really to the principal to be the frontline person.

David (31:35):
And that means that there are hundreds of different people who could be approaching it hundreds of different ways, um, with some success stories and some really bad stories. But when we did the survey, we heard so much, that was worrisome, that what I said, we didn't audit the accuracy of the information received in the survey. But I said to the Toronto District School Board Senior Management, if we assume that 2/3 of the people giving us written feedback in these surveys are, are, are wrong. You still have lots to worry about, do you follow me? So, but then the next thing people need to know about is among the things people need to know is not just what's on the menu, but how to order it. In other words, if you want to, uh, uh, seek some of these things or explore them, um, how do you find out, uh, how do you, who do you talk to, and if you're not happy with what they say or decide, where do you go next and how do you present to them?

David (32:34):
So I'll give you an example, here's the contrast between Canada and the US. As I understand it under US law, um, as students with disabilities are not only entitled to an individual education plan or IEP, but they're entitled to an IEP meeting with the school board officials, um, uh, to collaborate on right. Again now in Ontario, as a contrast, there is no stated legal right to an IEP meeting in our special education laws. All that is said in our regulations is that, uh, the school board has to consult the family, but that is, uh, I believe routinely done by a letter that simply says, you know, we're going to do an IEP.

Genia (33:17):
Here's the IEP sign here.

David (33:19):
Know before it's developed saying, we're going to do it, you know, tell us your child's strengths and needs or whatever, but, and let us know if you want to talk about it, but not as specific statement, like you were entitled to have an individual education plan meeting with us. We would bring the whole school team together with you and, and whoever you would like to have at the table, where we could talk about what we might include in it to have discussions and see if we could arrive at a consensus, we would welcome that opportunity. Let us know if you'd like to have it, if you need any disability or other accommodations to be able to participate, let us know. Now that doesn't cost anything to add to their form letter, but, um, the province is not requiring that to take place. Now I know from talking to some parents that parents who know about asking can call up and ask the principal or email the principal and say, hey can we have, whether you call it something fancy, like an IEP meeting, it doesn't matter.

David (34:17):
What matters is, can we talk about what could go in the IEP? And if you have a meeting, you know, um, I'm sure if you ask, they'll say yes, but the parents don't know to ask and don't know what to ask for, you know, a meeting and so on and, and who to have there and who you can bring. They're less likely to ask. So in my video, as an example, I spell that out and give people, parents tips on asking for this. I'm hoping if more parents see this video, ask for those meetings, that they can work together and end up with better IEPs. The other thing parents don't know about is what to do. If they're concerned that there are good things in the IEP, but they're not actually being fulfilled just because it's written in the idea doesn't mean it's actually going to get done and parents need to know how to approach that situation, who to go to and what to do about it, um, to get that fulfilled. So it's a long answer here.

Genia (35:22):
Let's talk about that in the context of remote schooling for a second, David?

David (35:26):
Sure.

Genia (35:27):
Sorry. So I'll just, I think that one great example right now, or one really prominent situation right now, and this whole issue people will not, you've got an IEP, but nobody's following it. That is pervasive. It's a very common, longstanding issue. But the issue of, of IEP is essentially being almost entirely abandoned. Um, during remote schooling, I think is a really top of mind and relevant example of this for, for many people listening. So I wonder if we could just, I'd love to hear your thoughts.

David (36:00):
Okay. Well, let me tell you a couple of things. First, we don't know how many IEP's are actually being followed and how many are not at most, we have anecdotal feedback. Uh, but one of the things that, that my coalition, the AODA Alliance is saying is there should be a requirement to audit them and publicly report on compliance, not revealing kids' names, but the ministry of education, for example, in Ontario, is, is really the ministry of really good policies that not all their policies are really good, but they're really good at writing policies. Not so good at making sure that anybody is actually following them. And when they're presented, uh, confronted on this, they'll just make big statements about, well, we, we have a policy on this and we have a policy on that. Well, that's lovely. I mean, there's still key areas where they're missing policies that we need, but you need things that will make sure that these policies are really being followed.

David (36:53):
And for example, auditing how many IEP's are being complied with how many are not, and finding out where the recurring gaps are, could help plan to fix them. But if you don't look and you don't know, you can't fix them. Now during the distance learning, this becomes more problematic. In fact, during COVID, it becomes problematic for a couple of reasons. First during distance learning, you've got teachers who, for no fault of anybody, no fault of the school board, no fault of anybody. Um, aren't in the same room with the students. So they, they don't know how much they're connecting. They don't know how much it's harder to identify needs. And it's hard, hard to know if they're actually doing, uh, resolve those needs. Uh, now going further, I've talked to one teacher who said, they're a distance teacher for one school board. And when they first got a class of how many kids, they could not get the school board to give them the IEP's for their students where you can't fulfill an IEP.

David (37:55):
If you kick it out, your hands on them.

Genia (37:57):
Wow..

David (37:58):
Okay. I think that eventually got solved, but that is a serious problem. Um, the next problem is, um, one of the ways we know, uh, you know, that parents can try to follow what's going on is visiting the school when their child is attending school, uh, to see what's going on. And if they know the IEP says that X is supposed to happen and they show up and the kids come home, how'd you do at school today? What'd you do nothing, right? You can't monitor that way. Always. Sometimes you can, but you want to be able to go in the school. And I, well, a situation course for nobody's fault. Parents can't go into schools now during COVID. So that level of supervision or, or informal monitoring is gone, what does that mean? We need even more work by schools to monitor because parents can't. Now what's really tragic in all of this is, you know, we're all learning new stuff about how to do distance

David (39:02):
learning, but what has been missing on a system-wide basis in Ontario and others listening to this podcast can decide to what extent this applies in their communities. But what was missing is when our government moved us to distance learning in March of 2020, they did not adopt a comprehensive strategy to make sure distance learning was accessible to students and teachers and parents with disabilities. And I will tell you that the coalition I lead, the AODA Alliance, we have been among the lead voices, raising these concerns. And let me point out two illustrations. If I can. Um, in Ontario, the government owns and operates a public education TV network called TVO or TV Ontario, and the government of Ontario announced the minister of education over and over it we've partnered with TV Ontario to deliver online learning content. Well, we, my coalition took a look at that content in, uh, in May.

David (40:08):
And it took about two minutes to realize that it's not accessible, that there's all sorts of accessibility problems, uh, and like accessibility for government web content and private web content has been a law for, for years. They're not even obeying their own law. Well, we pointed it out. I talked to the vice president for digital content of that TV station network back in, um, in the spring, confirmed it and writing, uh, uh, said, you need a plan. You need to fix it. We've seen no evidence. They've done anything to fix it in the intervening six months. The other thing we did, uh, my coalition the AODA Alliance teamed up with another grassroots group that were closely aligned with the Ontario autism coalition. And we did an online webinar on May 4th, 2020. I can send you the link. You can post it where we offered tips to educators on how to make distance learning accessible for kids who are blind, kids who were deaf, kids with autism, kids with behavior problems, just a spectrum of different ideas.

David (41:18):
And it's had like a couple of thousand views, um which is great. We put it together in five days, all through volunteer efforts. We have since told the Ontario government, you share this with the 72 school boards, get this out to, and teachers let them learn from what we put together. As far as we know, they have it. We've said to the government, you should be doing the same thing, creating resources like this. You know, these are things that could make these. Instead, what they've done is they've left it to each school board, each principal, each teacher, to figure it out themselves. That's the entire model of inaccessible education, but Ontario has right now. It's basically, here's the mainstream system. As for these other kids, they're exceptions, you figure it out,

Genia (42:10):
Right? So I just want to, to say, um, to people listening, I'll make sure that the link to that resources in the show notes, so we'll make it easily accessible to you in the show notes. So David, if you're a parent and your parents, and you know, maybe you're doing home, you know, remote schooling and you are seeing things on your child's IEP. Like, you know, this goal is canceled due to remote schooling. Um, or, you know, there are things on the IEP that are not being addressed at all, or accommodations that are not being addressed at all during remote schooling. Um, any thoughts on sort of practical steps that parents can take to try to address this?

David (42:58):
Well, I'm, I'm really going to refer people to the video of practical tips for parents. Cause that's what I spend 50 minutes giving you because it's whether it's distance learning related or whether it's related to in school attendance during the social distancing or whatever else, the strategies are all the same.

Genia (43:17)::
The strategies all the same, okay.

David (43:18):
The solutions may be different. And my view is I cut government just mountains of Slack for last March and April, because they were in a crisis, nobody knew this was coming. We've had to transform literally in Ontario, 2 million students to learning in a context that never, uh, contemplated before on short notice. And that's enormous. You gotta cut them some slack. And I do, but it's now been eight, nine months since then. And they were told about these barriers early in the process. Um, the standards development committee I'm sitting on, gave the government a detailed report on the 24th of July.

David (44:03):
It's on aodaalliance.org/education. If you want to see everything we're doing on education, go to aodaalliance.org/education. You'll see up there that a detailed report on what needed to be done to make distance learning and reopened schools accessible, um, was delivered to the government back at the end of July. And we have to this day, see no systematic plan, uh, to implement our recommendations. There's still back to the same way they dealt with it months ago, which is, Hey, school boards, you figured out. And I want to re emphasize, I'm not saying no teachers are doing anything right or no principals or no school boards are doing everything right. I know they're all been working on this and trying to figure things out, but they're all being left, um, at sea. And that is a formula for inefficiency and waste of public money when they each have to reinvent the wheel.

David (45:05):
By the way, if you're just one quick plug, if your listeners want to learn more about the advocacy, my coalition is doing, I'm going to recommend you do two things. If you're on Twitter, follow @aodaalliance or me @davidlepofsky D A V I D L E P O F S K Y. It's the same tweets either way.

Genia (45:30)
I'll make sure those links.

David (45:32):
We have a Facebook page for we have a Facebook page for accessibility for Ontarians with disabilities act Alliance. And if you want to get our email updates, we send out regular email updates. We've, uh, quieten down over the Christmas holidays and the new year break, but we're gonna, uh, kick back into gear on the new year. Um, at some point. Go to our homepage, which is aodaalliance.org. And right there, there's a signup link. You can plug in your email address and, um, you know, learn more about what we're up to.

Genia (46:05):
Awesome. Well, I think David would, would those that contact information and those resource links, um, now is a perfect time to wrap this up. I do want to let people know that the audio from the video that David has been talking about will be published, um, on the podcast at the same time as this interview with David. So if you're listening to this interview, the audio from the video is also available. And if you want to watch the video itself, again, the link for that is goodthingsinlife.org/david and of course, that will take you to an external link where the YouTube video is.

David (46:41):
And, and I, if, if I can ask your listeners, I strongly encourage you if you like the video to share it with other parents, share it with educators and urge your principals or school boards to circulate it because you know, the old thing about knowledge is power. This is really it.

Genia (47:01):
Yeah. And one of the great things about this video too, is that, um, while you're providing parents with practical tips and ways that they can, um, you know, pursue building relationships and moving towards quality education for their kids, and then following up, if it's not happening, it's not a video that in any way, pits parents and schools or teachers or principals against each other, this really is, as you've said, tips

Genia (47:30):
And information for understanding how does the system work? You know, and, and that is, it is, or it's not contentious, or at least it shouldn't be. Um, so this is a great resource. I think that outside, you know, if listening and you are outside of Ontario, many, many of the tips that David provides are still going to be super relevant. And one of the things that can, that you can do fairly easily is look or watch or listen to what David is saying about the process and remediation steps. And even just understanding that this is how it works in Ontario will probably make it easier for you to find the comparable steps in your own school system, if you're outside of Ontario. So I think it'll be valuable regardless of where you live. David, thank you so, so much for your time today. I'm really very grateful. I look forward to hopefully having you back on the podcast once the AODA Alliance recommend, well, sorry, it's not the AODA.

David (48:37):
Oh, the standards development committee recommendations

Genia (48:40:
Remind me of the, the standards yeah. Remind me of the, um,

David (48:44):
K-12 standards development.

Genia (48:49):
So K-12.

David (48:49):
Community.

Genia (48:49):
Yeah. So the report and the recommendations that will be coming out in the first quarter of 2021, I hope to have you back on to discuss the results of that work.

David (48:59):
Well, thanks for including me and everybody stay safe.

Genia (49:03):
Thank you so much.

Genia (49:07):
Thank you so much for joining David and I today. I really appreciate his insight and his experience. And I do really want to recommend that you would either watch the video that David's been talking about, or look for the audio version. That's going to be published on the podcast. So it will be published at the same time and come directly after this episode of the podcast. Now, if you are interested in working on your child's IEP, that's what we're working on in the month of February in inclusion Academy, . Inclusion Academy members, get monthly support access to, you know, live events, um, you know, live support. They also get access to The What, Why and How of Inclusive Education, which is our foundations course on education. So David's video is providing a lot of tips, a lot of information, and The What, Why and How of Inclusive Education is really that core foundations course so that you are going to be well-informed about what it means to have an inclusive education, how to go about advocating for it and how to support your whole school team in pursuing inclusive ed. So I hope you'll look into that. If you're interested in joining the Inclusion Academy and having my support as you work through your child's IEP for the upcoming year, including thinking about remote schooling, then you can go to goodthingsinlife.org/join. Until next week. I hope you are well and safe. And I look forward to being here again with you next week. Take care. Bye bye.

Special thanks to David Lepofsky for joining me this week. Until next time!

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Genia Stephen
Genia Stephen

Sister, mother, midwife, writer, speaker and perpetually curious. Dedicated to bringing you the voices, ideas and conversations of world class mentors and thought leaders in the field of disability.