This is being provided in a rough-draft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.
Lauren DiMartino: I think we're close enough to a situation where we can get started. Thank you so much for joining us. We intended for this to be more conversational and informal any way, I actually kind like we're sitting around a table I think to that extent as long as my co-panelists agree, let's have a conversation not necessarily don't have to save our questions to the end.
Evan Monod: Yep.
Lauren DiMartino: Talk about our own experiences whatever we can bring to the table.
Attendee: Hello we'll do introductions.
Attendee: Ok.
Lauren DiMartino: So our plan for today we'll just do some introductions. Give a little overview of the IDEA, not sure where folks are coming from, with the background on that. So you know, we figure we would provide a fundamental understanding of that. Then talk about how the IDEA and IEP process is intended to support transitions from being a child or a teenager young person to a more independent adulthood. And then dive into a conversation about self-advocacy after that process, what it looks like, working with folks with disabilities from a legal perspective and from someone who works with folks, hello.
I would love to hear about you know, where -- maybe take this moment to hear where you're coming from the work you do, so we know how to kind of tailor the conversation
Attendee: I'm Nancy Mayer I'm an attorney out of North Carolina I have clients who have children who are transitioning from being children to adults. I mean obviously the big thing, what special needs trust do we set up, do we not set it up because they don't need it, how do we have a thrust a sort of set up. That's what I -- but they always have questions about what to do about their child, and how their child can be free and self-advocating as possible while still having a special needs trust not wanting it. That's part of the problem the kids don't want, don't want the overview.
Lauren DiMartino: Yep. We'll talk about some of that.
Attendee: Sure my name is Tara I am a American University.
Attendee: Be aware as soon as you think you're done you go for the Bar.
Attendee: It doesn't yet.
Attendee: Don't wore by that.
Attendee: It was so --
Attendee: I have a so many days before I think about it, who is counting.
Attendee: You get done you march it's not over.
Attendee: But I am just starting my journey I am in the disability rights all clinic at American I'm interested in pursuing disabilities right law generally speaking I have a special interest in special education law, that's what brought me into this session today.
Attendee: Great.
Attendee: I'm a third-year evening student, we have one more year. At University of Maryland I'm not as close, to done but, yeah.
Lauren DiMartino: Great.
Attendee: I am a recent graduate from Syracuse Law last spring.
(applause)
Attendee: And just passed the bar in Syracuse someone who is autistic I'm interested in promoting self-advocacy, and also general like information society and chance to do so with my career has been a bit of a journey. I'm currently working as a law clerk until August after that, we'll see what comes next.
Attendee: Thank you.
Attendee: Katie I'm a third year law student Seattle University, also counting down the days.
(applause)
Attendee: I'm a law clerk at the Federal trade commission, regional office. And I am here because I have been a victim of special education services as well as challenges with agencies, the whole spectrum of them.
And I recognize that, my own persistence is a lot of the reason why I was able to resolve some issues and to get many of the things even if not all of the things so I want to see how I can help others, kind of develop that persistence to get what they need as well.
Attendee: My name is Margaret I'm not an attorney I'm more of an educator I worked in Montessori for years I worked with two year old that's the prosecuted of time, when educators start picking up some visual observations that a child may need further assistance because that's when certain disabilities start showing up like autism spectrums things start showing up, speech delay, and I worked with children who are exceptional worked with children who had Cerebral palsy, low vision Montessori is all inclusive classroom setting it is ideal for normal children, and also ideal for children with disability it is a really good setting for children to respect each other no matter what their needs are and I'm here because I'm a real self-advocate because I have been legally blind for like 3 years now and I'm a disaster volunteer with the Red Cross, I work with a lot of non-disabled volunteers and I have actually had them come tell me when I register to come in and I was like what can you do? I have to be a real self-advocate for myself.
Attendee: Yes. Yes.
Attendee: When you learn to be self-advocate you also learn to be a self-advocate for children with disabilities I got that electric my teaching and teaching parents they need to be an advocate for their child and make sure their child's knees are met from the very beginning and get them diagnosed and things like that. That's one of my goals when I was teaching. I observed a child, because the child is started early -- by the time it is time for them to be in primary school they might be able to be inclusive in a regular classroom setting.
Lauren DiMartino: Yes. Um, then just a time -- we were just stall so you guys can get settled we'll jump in I'll ask you to join the conversation please introduce yourself as you do and so just introduce us my name is Lauren DiMartino my pronouns are she her I'm a newly blond women in a gray shirt and black suit.
[laughter] and I an attorney at
DENISE BROWN: I do brown -- I do a lot of background my background is at a highest education, I used to work with a school with -- this is a unique opportunity to see the students aged out, graduated from the more IDEA and IEP process, now in their first opportunity to be self-advocates what that looked like I work with a lot of adults with disabilities you know have been able to see that spectrum.
Katherine Groot: My name is Katherine Groot thank you for being here, my pronouns are she, her and hers I am slightly taller than average white woman. My husband would disagree with my height, shoulder length hair and glasses I'm wearing a black turtleneck I'm a staff at the legal aid society in New York and with the disability advocacy project I primary work with students from like 6 months to like 24 regarding their special education services, disciplinary hearings and other disability stuff.
Lauren DiMartino: Kamisha. She is joining us via zoom she was unable to make it down here today we're so glad she could join us.
Kamisha Heriveaux: Hello my name is Kamisha her view I'm a self-advocate -- I'm currently wearing a red shirt, red cap. I have CP, Cerebral Palsy, so I am in a chair, I am currently I'm from here and I'm wearing yellow like glasses with brown edges on the edge of them. Thank you for having me today.
Lauren DiMartino: All right.
Kamisha Heriveaux: It is good to be here! Again, I am a -- I work in MASS advocates in Boston we'll talk about that a little later today. I guess I've been working at the organization for 11 years.
I help self-advocates and everyone speak up for themselves and help them get to learn what they want and just I help them with empowerment overall. So thank you for having me today.
Lauren DiMartino: Thanks Kamisha.
Evan Monod: Hello everyone my name is Evan Monod I use he/his pronouns. I'm a shorter than average [laughter] white man with way less hair than I had previously and I'm a staff attorney at the Arc.
We work and represent folks with intellectual developmental disabilities, prior to that I just started that job three weeks ago -- [laughter] -- prior to that I worked with Lauren at the Brown, Goldstein & Levy. That's why I am here. I also have Cerebral Palsy. I walk on crutches. I also have experience in the disability education space and lived that myself I am just very excited to be here.
Lauren DiMartino: Ok. Evan.
Katherine Groot: I'm going to give a very brief overview of the IDEA so it was signed in law in 1975. And this civil rights measure opened public schools to millions of children or students with disabilities. The main idea is that it guarantees access to free and appropriate public education, which is a legal term of art and the least restrictive environment, also a legal term of art with every child with a disability under Part B 3-21, 18-21 varies state by state we can narrow that down, and part C is birth to 2 years old. Under the IDEA if a student is identified as eligible for these services then an individual education program or IEP is created by the student's local education agency or the school district. And the IEP details a special instruction and the related services that the student may need I know that's a very cursory so -- yes. And then, the IEP is the legal document that we are making, that kind of encompasses IDEA.
So it outlines what the student needs, right? I find in my practice a lot of this is deficit based it shouldn't be. But it details their needs, in and the special education services they're entitled to, based upon the evaluations have been conducted. It is to be updated annually there's a mandate for tri-annual re-evaluation of the student. So that school district will schedule the IEP meeting and the IEP team will come together. There are enumerated individuals are supposed to attend the IEP meeting. I think most importantly the parent can invite anyone they want to the meeting. And I believe it is in New York state it is 14 that students begin being part of the transition planning. Is that what it is in IDEA.
Lauren DiMartino: I think so.
Katherine Groot: Ok. Yeah.
Lauren DiMartino: Typically parents, teacher right --
Katherine Groot: Parent teacher sky psychologist represented from the school, general education teacher special education teacher, yeah.
Lauren DiMartino: Yep. Evan, I understand you had an IEP growing up.
Evan Monod: I it.
Lauren DiMartino: Can you tell us about your experience and what worked for you.
Evan Monod: To give a little bit of background I grew up in what affectionately call the people's republic of Vermont, spent my formative years there I grew up on the border of two different school districts. And the school district I was technically zoned for when I turned five told my family basically he has to go into special Ed he cannot be mainstreamed at all. And my parents you know this is immediately post ADA in the mid-90s my parents fought that, we parents said no we think he needs to be in a mainstream classroom like everyone else, the school system said tough, you can move or go in a special education. So instead of filing a lawsuit, they decided to move, we moved to a school district that promised we'll give him an IEP for certain services he needs, broadly we'll use that as a jumping off point to accommodate him in a mainstream classroom.
So, I was a part of my IEP meetings I would say starting around 13-14 in middle school and then to high school I remember the high school I remember it a lot more clearly. IEP I was initially in some special education classes in elementary school. But then the IEP became really more of a vehicle to give me reasonable accommodations to allow me to exist in a mainstream classroom.
Lauren DiMartino: Ok I know you had mentioned to me before that in theory this the system works really great depends upon the players involved right.
Evan Monod: Usually that story is a perfect example that school district would have consigned me to a segregated system where I not be able to interact with any of my non-disabled peers I often think you know I probably would not be an attorney right now, or less likely that I would be an attorney now, if I had been put into that system.
Attendee: Can we ask questions?
Lauren DiMartino: Yes.
Evan Monod: Yes.
Lauren DiMartino: Did you feel like you were really listened to?
Evan Monod: Um --
Lauren DiMartino: In the school system that wasn't shunting you --
Evan Monod: Broadly speaking I was. They were always trying to think of new and creative ways to accommodate me. It helped I liked talking to people they seemed to like me but broadly speaking, yes, I did see -- I did feel seen. But again that was entirely dependent on me existing in a school that was willing to do that. Also, existing in a school that is reasonably well funded, right.
I say this because I've heard of stories of children that are intellectually challenged with down syndrome and other intellectually challenging conditions, the teachers are saying everything they do wrong, they don't really feel I know about those annual meetings that's when they come together and tell me everything I'm doing wrong. That's not really helpful for them and wasn't helpful for anyone else either.
Lauren DiMartino: If they're included, we'll talk about that.
These kids were included that's why they were complaining about it.
Evan Monod: It was a prescriptive exercise, that's really frustrating.
Katherine Groot: I know something I do in my practice I come in when it is pretty contentious the family and school district may not have the best communication and one of the thing I do if the parent doesn't want their child there whatever, we take direction from the student starting at 7 in our practice.
But like I'll make everyone go around and say something they love about the student. Because it is -- I know it is going to be they're acting they're doing, they can't do this, they can't do that. Focus is on problems not on what is going on.
Evan Monod: Not solutions.
Katherine Groot: You can also say he can't read, ok. So like what, how do you know that? What does it look like? What testing are you looking at? You can change into more positive language. And not be so deficit-based. It is a lot of work because that's the system is created to be that way. We have problems with kids with autism not even understanding what is going on.
Lauren DiMartino: Yes.
Katherine Groot: Capacity wise?
Attendee: It just goes over their head [laughter]
Lauren DiMartino: I mean I think not just autism there's a lot of you know, we'll talk a little bit about like capacity and how to approach that in a bit I think like, you said the way the system is structured, the worse off someone is right, the more challenges they have the more services they get. So we're as advocates often I think default to like no, no, no, this is you know, this is focusing on all these things that are wrong or not working. The deficit language that's the thought you know. I have a younger sister with disabilities and I often sit with her when she gets reevaluated for services from the state, she has a care giver to take her food shopping and she is like I can do everything on my own she doesn't want to, like, it is very difficult because if she sits there we're like do you need help with XYZ if she says no to everything she is not going to get any services I often have to have conversations with her, we know you can do so many things really I well, what are the things we can think about that we would like work on? To do better, you know, we are in this conversation though we'll frame it like you know and you have to like really -- then, have almost like a regroup after it, like how did you feel about that? Let's talk about some of your strengths now, it really I mean, I said the system set up so you're not focusing on the deficits you're not getting often not getting the services which is another problem yes.
Attendee: Kind of going off of that like, um, what if the child disagrees with the parent like -- [laughter] --
Katherine Groot: That happens all the time in my practice.--do they value what the child says?
Katherine Groot: So our retainer agreement -- I only represent low income traditionally black and brown folks. So it is legal services we don't charge for services. Put always have a retainer with the parent which means what the parent says is what we're supposed to do. Our practice involves really centering the student right, they're the one going through it. Starting at a very young age it is kids have very strong opinions my two and a half year olds have very strong opinions [laughter] -- we let our families know early on like, we will be having these conversations with your child and like so often, if there's disagreement, we'll come together, we'll talk about it I'll explain this is what your grown up is thinking.
Evan Monod: Right.
Katherine Groot: I would like to speak with you your grown up is going to go to the other room, what do you think? What do you want? What is an in between, letting that child know I'm going to have to tell this to your parent we'll do it together we'll talk about it together. I think this is part of the presentation later on so great question.
Lauren DiMartino: Legally you're representing the parent.
Katherine Groot: The parent.
Lauren DiMartino: It is an obligation to the parent, just makes it a little difficult. I just have a quick question just kind of going off that topic so I know that a problem I've seen a lot in the disability community is that parents are very concerned about money leaving the home for their children after school. How do you work and manage those types of relationships where the student is wanting to do more, the parent is not on board with them becoming independent. You know I know a lot of this is more applicable in the high school realm, kids are getting involved with VR services I just wondered if you had any thoughts on that.
Lauren DiMartino: We have a lot, I think the rest of our presentation is actually going to tie into that little further. If we don't answer that more directly at some point, chime back in, so let's -- do you want to talk quickly about what is built into IDEA to support the transition process.
Katherine Groot: Yeah sure. The IDEA requires transition planning and transition services which describes like the long-term goals of the long-term goals and outlines the activities and services that will be needed to try to achieve those goals. And prepare them for transition out of high school.
Lauren DiMartino: Evan my understanding is your IEP included very specific things that allowed you to transition to be more independent adult.
Evan Monod: Yes it did, there are 3 categories of services I can think of. The first was occupational therapy. So I am going to be going to college how do I you know do every day household tasks from cleaning to cutting up an Onion if I'm cooking. How do I do these tasks safely. That's sort of one bucket. The other bucket was more physical therapy focused you know how do I set myself up physically so that I am not going to be wearing out my body later down the line. The third which was just mentioned is vocational rehabilitation services. So these services look different in every state and they're different for every person. For me, they were actually -- I remember walking into that meeting with the Voc rehab people they said oh you're going to college as if they were shocked that I was going to college.
And I said, I'm not sure really why I'm here you know I'm not really looking to get a job yet. They said that's fine. Do you have books? I said yeah I have a whole huge list of reading for next semester. They said great, we'll pay for your books they paid for my books every semester in college which was an incredible financial lift -- assistance --
Evan Monod: Yeah it was a huge lift that's because I was largely in a living in a small state that carried. They were willing I went to school I should say I went to school out-of-state. I went to school in DC and, they paid my way, that was just an absolute God send.
Katherine Groot: I think some other transitional services or activities going off that, are career exploration, assisting applying to schools right, connecting with like New York it is called access VR, OPWDD sorry I don't know the other equivalents. Or like I often make sure in my student's plans like getting a state ID or getting a city ID. Or travel training for the subway and buses, also like daily living skills, financial literacy, putting text to speech apps on phones and things like that. So there can be just like more day-to-day --
Lauren DiMartino: That can go into a plan, so there's a commitment from the whole IEP group the parents to make this happen and then it is a measured goal you have to see if the outcome has been, so that's like a little bit more of insurance in a way, right. To see these things actually come to fruition.
Then the next slide just describing the visual on the slide it is a very obvious metaphor about blossoming -- [laughter] -- greenery and flowers, so we know that these are the goals of the IDEA but there seems to be very certain gaps between those goals and the outcomes. Some of it is due to parents, etc. --
Katherine Groot: Into adult.
Lauren DiMartino: Transitioning into adulthood, Kamisha I understand you had a different experience than Evan with being involved in your own IEP process, I was wondering if you could talk to us about that.
Kamisha Heriveaux: Yeah, ok.
Attendee: can everybody hear me ok?
Evan Monod: Yes.
Attendee: Yes.
Kamisha Heriveaux: Perfect, so, yes. My, my transition was a little bit different than Evan's. I to be honest with you I hated -- because I'm like -- I would go in the room -- two seconds about like -- what do you want to do? Like, like, what do you want to do -- what is what you want to get out of the meeting. What do you want out of the meeting basically I'm going oh I want to do this I want to do this, I want to do this and that. Two seconds later, two seconds later I saw a piece of paper saying I was here -- I signed a piece of paper saying I was here, I talked all in front of me, but literally, two seconds later into the conversation, I'm sent out of the room, for them to talk to my mother. So yes.
I wasn't really involved into my IEPs as much. The -- the group was like, oh, she is so wonderful, she is doing this you know, she is a great student and we love Kamisha. Like all the pretty stuff about me which it is totally fine but like it is kind of how would I say it -- babying, not should -- that's the word. Basically sugar coating everything for me, she is so nice, she is this and that. They didn't get into the whole conversation with me. So I basically -- I was told every single meeting to leave the actual room. And then they would talk to my mother. So I -- I basically wasn't involved in my IEPs which is kind of frustrating.
The only -- the only IEP meeting that I was like officially involved in was my last one where like everyone came together they were like oh, this is what we're going to do, this is what we're going to do, you know? Here are the people to help you. And then -- you're doing it. So I think, I think in my perspective is like you know because I wasn't -- I know what I wanted to do and stuff. But because of like my perspective in like IEP meetings is from like the student's or the individual's to get involved in their whole IEP process and the whole IEP meetings, because at the end of the day, it is just about them. And you're literally teaching I mean you're helping the student get to that process, whatever it may be. I literally had a teacher after my meeting, I literally had a teacher say to me after school, can you let's talk.
She said like all in like nonprofessional baby voice type stuff. She is like, um, I don't think you can really go to college. So I was like, are you supposed to -- in my head, of course it was like, are you supposed to say to that to a student, like that's when everything went -- 360. So now I am getting my GED, and I am trying to prove people, I'm not -- I know I don't have to but like it was like that statement was kind of like a gut punch to me like literally teachers are not supposed to say you can't do something, like they're not supposed to like you know, they're supposed to lift you up not tear you down I was like,
I was like you know what? I'm going to prove you all wrong, go to college so that's what I'm trying to do now.
So that's why I am in the process of getting my GED. If that makes sense.
Lauren DiMartino: Yes. Congratulations. hank you for sharing that. I want to hear more about what you're hearing about in a sec. I just wanted to mention a couple of things I had noticed working in the community college with a lot of students that had been a part of the -- had IEPs in high school or Section 504 plans which are pans equivalents in public schools, one was the ability, the ability or willingness to talk about their disabilities right, to articulate the disabilities.
I know a lot of that comes from shame and embarrassment that is put on folks by our society, I've associated with the need for accommodations or the need for help. And sometimes it was even a difficulty they weren't age to say you know, if -- they were not able to say why or what. You got down to it, they maybe like oh yeah I had extra time I took a test there ok. Why? Because my teacher told me I could. I think that is so central to thinking about how to incorporate young people into those conversations. Like what does this mean in a way -- these are students went onto community college. There are students graduating and have the potential for earnings degrees but like incorporating them into this process to have a general understanding what this is, why it is, why they shouldn't be embarrassed.
The other thing was just like knowing where to go to ask for help or even that they had to ask for help. I think there was a lot of this idea that things were automatic. Folks did not how to articulate their disabilities they would also -- not realize that was something that they could or should ask for you know. I mean sometimes it would be a full semester or they fail a class until they were sitting with me so we can be like, let's think about what happened. They're like it was a lot harder without the separate room, that I had in high school. Oh you had a separate room in high school, did you -- did you talk to disability services here?
Did I take to who you know? So I think, thinking that this was something that just happened automatically, if it didn't happen automatically it wasn't a thing that could happen. Talking to students about -- because it is the parent that might be seeking out the IEP or the school is working with them you know, if the adults can say, we are reaching out to schedule these things, there's these disability services, these are the people that are involved at this stage, the next stage these are the types of people are involved.
Or just making it clear that these things don't just happen out of thin air there's advocacy in making them happen.
Kamisha Heriveaux: Can I mention something quickly Lauren.
Lauren DiMartino: Yeah, please.
Kamisha Heriveaux: I -- again that's why like I think it is important to have everyone in the room. Including, including the individual because you get like I said, you get to hear what the individual wants. It is not like -- sorry to say it is not just about humans and the support it is about, it is about the individual themselves. It is about coming together to like figure out like how do I work together with this person? How can I articulate what I'm talking -- what I mean without like hurting anyone's feelings. Like how -- like you have to be in the room in order to -- in order to speak your mind. If you don't speak your mind like you're not going to get to where you need to be. Like if you don't like say something like you're going to be in the back of room. That's why I'm saying like it is important to have everyone in the room of like, ok, this is your -- this is Kate, Kate is going to help me with figuring out what to do. This is Lauren you know? Lauren is like my case manager this is Kamisha, Kamisha is the individual that she is going to help me do all this stuff.
Lauren DiMartino: Yep.
Kamisha Heriveaux: That I feel like that is very, very important and I know, like when I talk about that later on, but like, it to me is like a broken record. You have to have people -- you have to have everyone in the room, not just a certain group of people. Everyone has to be in involved.
Lauren DiMartino: Right I think that shifts nicely into our next point but like talking about what does the next step look like. I think this the idea of scaffolding right. Providing the supports and slowly taking them away, so that the person can fill that space on their own and you know you said you started speaking, Katherine started speaking with students at 7, if they're there, right. They're not maybe not fully understanding what they can ask for at that point. But eventually they're hearing these ideas it is maybe offering these are the types of things that are available, what do you think would help you? I don't think we can trust people to have the sense of the thing they need. That information has to be available you can't ask for things you don't know exist. Being apart much the conversations from 7 right, having someone actually sit down and be, what do you want? Starting at 7 that person starts to think, what I want I have a say in it, let me brain storm and let me see what other people are getting and start asking questions.
Katherine Groot: I have a pretty new client and one of the school's they need to be evaluated this child needs to be evaluated. They're constantly getting up from their seats. And I was talking with the parent and then I was talking with the kiddo I was like, what's going on? Like why do you have to get up from your seat from your seat. I am thirsty, I don't have a water bottle they're like 6 you need a water bottle fantastic [laughter]I can do that.
Katherine Groot: No one --
Lauren DiMartino: No one thought to ask them.
Katherine Groot: Kids know we know I can't sit here it's been 35 minutes they're boring kids can say that, like -- it was pretty we'll see if they need to be evaluated [laughter] but like you know --
Evan Monod: Water bottle is a good first step.
Katherine Groot: Yes, much less expensive.
Lauren DiMartino: How did you see this playing out, like the scaffolding played out in your experience.
Evan Monod: Yeah so the -- so I kind of mentioned earlier I started out with an IEP I started out with special ed mostly for math classes. Math was really difficult. And geometry was really difficult, in particular perceiving shapes was really tough for me as I moved on I got to pick my own classes that became less and less relevant. And my IEP shifted more into a 504 plan. So what are the actual accommodations that he is going to need? So I needed things like a laptop, I needed proper typing classes that I -- that were tailored to me and my physical limitations right? I needed -- I needed a forum to be able to express that and that forum became my 504 meeting.
So, I always say that I sort of -- I'm now an advocate for others with disabilities I started out as an advocate for myself. That was so incredibly important because by the time I got to college, we have a very strange system in this country where the onus is put on the educational provider to provide accommodations.
And then, it seems like, once you turn 18 you go to college, the burden flips. And suddenly it is on you, you have to explain. Why do you actually need this, right? What do you actually need? Why do you actually need it? And so I was able to go in confidently into my first meeting in college saying, look, I have like 15 years’ worth of documentation. What more do you want from me, right? That is only because it was 15 years’ worth of me and my parents arguing to get these things, right.
So, really prepared me very well and then it prepared me again in law school when I had to have the same conversations again, it prevented me for the bar to have the same conversations with the Bar they still got my accommodations wrong on the Bar [laughter] so yeah, it really, sometimes I think if I had not been given that experience as a kid, would I have the where with all the audacity to be like --
Attendee: To be a self-advocate.
Evan Monod: -- exactly. I thought like, as someone who needs to request accommodations in college, but did not -- had like a needed them more than I did than in high school. I would like my college like Office of support services was so open and willing to work with me. Like I have heard horror stories with other students with disabilities that I know, that sometimes like -- especially if they have a -- they may have a hard time with even physically getting to the office.
Attendee: Right.
Attendee: To request the accommodations.
Lauren DiMartino: That's why I think what you were saying earlier in theory this all works in practicality, who are the players involved? Which is why allowing young people to understand what their rights are, what their entitled too is all the difference if you go to someone, you don't know that, you go to someone who is not giving you the services that you deserve, you think that, that's those are just what is available opposed to being actually I do know this is not, this is not -- maybe it's not you know, doesn't have to be some in-depth understanding I know I'm entitled to more than this. Or different than this.
I had a very close friend that was first year of college, and she was in a wheelchair. They like told her yes we will accommodate you, yeah. We'll put you in a dorm that you know has ramps and everything. So her parents took her to what was supposed to be her dorm, it was like a -- one of the oldest building on campus there was no wheelchair ramps no accessibility anywhere in the building. So they had to -- she self-advocates for herself. She found -- because she was new to the campus she found out where she is supposed to go for the dorm assignment she got immediately switched to a new building with accessibility, it put her parents and her, through an extra step, she had not in place, because they were not listening to her or her family.
I did, so my name -- with the nice to meet you I'm a new lawyer and in both my clinical experience and in my personal experience someone with an IEP in special education classes one of the things that I experienced both through just like my parent was advocate for me I learned advocacy through my parent is that there's a lack of information regarding institutions that have ADA violations against them [laughter] who have students who, like part of transitional programming I want to go to this institution, for instance Boston University, you get there they are super well-known for using every single accommodation.
Katherine Groot: They refused my accommodations adds well.
Evan Monod: Really.
Attendee: Yeah.
Attendee: My friend, and, she called me up at 24 hours after all this in tears I said, what did you do -- she self-advocates they gave her a much nicer room than she would have gotten in an old building stuff like that.
Then, it ended up being a better setting because she was able to be more independent without asking for a lot of help. But --
Lauren DiMartino: Transparency piece is what you're saying.
Attendee:Her parents were advocating for her too, that helps --
Evan Monod: To go back to Lauren's point just briefly I think it is important the identity of people at issue, right. Both in terms of the individual with the disability's advocacy skills the skills they were able to gain from their up bringing. The other -- the people on the other side of the table, right. But here's the thing, it shouldn't matter.
Attendee: Yes.
Evan Monod: It shouldn't matter because the law is the law. You want it enforced --It is hard for the other students they make it hard to ask for that. I mean, I have gotten an accommodation in law school, I had not been in school for 20 years so anxiety on tests was -- having not gone school for 20 years I was asking for an accommodation I got it, my classmates were treating so poorly -- you know, you would think in a law school they would know better than this.
Lauren DiMartino: Everyone feels like they're being cheated somehow.
Katherine Groot: I think also the lens that I can speak for myself but I'm going to generalize to society also, is like, we're ableists, like -- so we should -- any ways. There's complicated things but like we're always looking at it through the lens of like someone that is mobile, someone that can speak and that blah-blah that we need to flip that for like the educators and the school psychologists and all those people involved and like the IEP process or accommodations when you get to college.
Attendee: All the other students.
Evan Monod: Yes.
Lauren DiMartino: I want -- we have like 3 minutes left. And -- I have a lot to get through I just, if you could quickly tell us about the role I know you have been a social worker on your legal team the role that plays in the scaffolding process we can hear from Kamisha about the advocacy she is doing as well.
Katherine Groot: Yes, I have a social worker it is fantastic. I encourage all law offices to have social workers. It is a skill set people train for, study for just like lawyers. And she is phenomenal, is able to connect our clients with city and state agencies, um, for vocational training things like that. And she is also able to work on -- with the students like self-advocacy skills specifically which is really fantastic. And she is able to attend the IEP meetings. She preps with the student beforehand and goes with them and debriefs. Yeah it is really great. It feels really special to have a social worker.Kind of like a support system.
Lauren DiMartino: Kamisha, you're doing some work now, at MASS to empower other folks with disabilities and do some leadership trainings and can you tell us a little bit about that.
Kamisha Heriveaux: Yes. So, I've been with -- I've been with the organization for 11 years now. As to how I got started with that, my I did internship so I got the job in 2013 and then I officially got hired in 2015.
So basically my job -- I wear many different hats within my job. But my job is to help people ad voluntary indicate for themselves. No matter what they need and you know, my job is to you know, teach -- show people how to vote you know? Like start advocating small. We do like, if it is like what kind of shirt do you want to wear today? You know. We're all about self-advocacy. We teach trainings about self-advocacy. We teach about voting and things like that. We focus on the individual as well as what they want to learn as well. But we also have our own like dynamic to be like oh, this is, this is what we can show you to be independent, independent going out -- as a grown adult. You know, we have a better understanding of what you can do v. what you can't do. Because we -- I hear I shouldn't say we hear but I hear a lot of like, we can't, we can't, we can't. But now like I -- me personally I'm trying to be like yes, you can instead of you can't. That word just, for some reason that word doesn't bother me. I have heard that since I was like -- since I was a baby but like you know. That word -- but now we're like, we're showing people like yes you can instead of no you can't you know.
Lauren DiMartino: That's awesome.
Kamisha Heriveaux: In many different ways.
Lauren DiMartino: Thank you for your work. There are some I know there are local Arc chapters and other organizations like that, that do provide this type of support. And just because we only have a couple of minutes left I want to make sure we're chatting about how this translates into self-advocacy in post-education. And I work with a lot of adults with disabilities in my role and varying capacities right.
So, there are legally speaking rules of professional conduct that dictate this. There's rule 1.4 the model rule of professional conduct for working with clients with diminished capacity. It says when a client's capacity to make adequately considered decisions in connection with representation is diminished, the lawyer shall as far as reasonably possible maintain a normal client lawyer relationship with that client. So it is like important to be thinking about how to modify the services that you provide to make sure that the individual can be the client, right.
But if there's also part of the rule when the client of diminished capacity is at risk of essential harm unless the action taken, the person is not able to act in matter of self-interest the lawyer is to take the necessary actions consulting with people in their lives have the capacity to ability and to take those actions in practice my mentor Sharon who he was in here, earlier I want to credit about what I am going say I've learned so much from her the first time who is really the client? A lot of times we have, we work a lot of service providers the service providers will reach out they say oh, someone in one of our homes needs your assistance or, a parent reaches out, even though their child is 40 and living independently. Right? So who is the client? And we start by saying, can the client choose us as the lawyer? Do they understand why they need to hire a lawyer, do they want a hire, do they want me to be their lawyer if the answer to that is yes, it is very straight forward.
Sometimes it is less clear, sometimes it is no, right. One time we had a service provider reach out because someone in -- someone they provide services too, her boyfriend move out he was providing -- paying for most of the rent she knew she wasn't going to make next month's rent she went to the leasing office signed something terminating her planned on moving into a shelter she had kids we don't think she understood what the impact of this is, like what living in a shelter looks like. Can you get her out of T say you know she didn't know what she was doing beings we spoke to her she was very clearly knew what she was doing I don't know she understood how difficult the shelter was going to be she is like I could not pay the rent next month I was in a contract that said I could, I ended the contract, we're not going to come in and claim she didn't understand she didn't want us to do that. Our strategy had a shift even though that might have been the easiest out she was the client.
So but -- regardless of the capacity and in all situations we're providing accommodations, right? We're simplifying difficult concepts maybe altering our default modes of communication maybe we're used to email I have a client that is just forget trying to get her on a zoom right. We have to have in-person meetings even if it is simple. Something that could have been short or where can you go? Like, we traditionally are told we have to have meetings -- if you need to leafy understand. In our office, but like that doesn't, there's nothing that says that. I can go to where they live. I can go to a place that is easier for them.Um, and often parents representatives are still involved making sure everyone understands who my client is. Making sure that the client is, knows they're free to consult with mom as much as they want. And they could have meetings that will affect attorney client privilege there are legal consequences to that.
And -- you know, also, we always make sure we're meeting with the client alone, to say like, do you want your mom there? Are you able to say everything that you want in this meeting with mom or are you holding back. Because often that, um, is difficult. But even when a guardian or representative is a client which comes up more often than it should be, guardianship has been so every used I encourage folks to look into supportive decision statutes which is new in Maryland but even, with clients with Court appointed guardians, people forget that the -- person still retains their civil rights they retain the right to express their preferences and desires guardians must respect the preferences unless doing so could cause significant health and safety concerns Courts recognize that.
Kamisha Heriveaux: Can I -- just shall so, that I could not agree with what you're saying more, we have to have thing in plain language --
Lauren DiMartino: Exactly everyone can understand what is going on, what am I about to sine sorry to say I'm not a lawyer I don't understand for the life of me I could not understand for the life of me, is like I don't know, what like, the law in like Timbuktu if I have it in plain language I can be like oh, ok. This is what it is.
This is what -- you know.
Lauren DiMartino: Exactly --
Kamisha Heriveaux: This is what it is, but I'm actually finding this is what I'm actually doing. I think the more we have in plain language the better everything will be, I'm not saying like, we have to be like teachers and lawyers and -- no disrespect. Teachers and lawyers [laughter] and you know, to learn like what is in front of us, but like we can't -- we can't -- we can learn differently we just have to have things in -- we can live the exact same thing we have to have it is main language.
Lauren DiMartino: These are the dynamics we can preparing people at a very young age not to expect them to understand as a adult I mean I know we're over, I wanted to -- we were going to talk about just being a self-advocate, now an advocate for others.
Evan Monod: We have a lot of law students in the room or about to be grads I'll say it, if you're at all interested in civil rights attorney, do it.It is not the easiest thing in the world, it will not be it is the most fulfilling job you can do I will also say though if you're a person with a disability yourself, or you are getting into this line of work because you are related to a person with a disability or you know a person with a disability or you care about disability rights in general, make sure to keep some psychological separation right. Between yourself and your client. At the end of the day you are doing the very best you can, to represent that person. But you are not that person.
Right. And, all you can do is all you can do. So I think it is always important to keep that in mind because otherwise, you are going to care almost too much and then you are going to burn out and that's not good for anyone because in order for you to be an effective advocate you have to be able to do this for the long term, with that thank you all.
Lauren DiMartino: Sorry we went over.
(applause)