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Hey folks, [00:01:00] welcome back to another clinical episode here on The Testing Psychologist. I have a return guest with me today, Dr. Rebecca Resnik. She is a licensed psychologist, specializes in neuropsychological assessment in her group practice, Rebecca Resnik and Associates, which has offices in North Bethesda, Maryland.
She is the former President of the Maryland Psychological Association, co-founder of the Computational Linguistics and Clinical Psychology Workshop, which is 10 years running at the North American Association for Computational Linguistics. She loves conducting continuing education for psychologists and educators.
We are lucky to have her here today as a return guest. She is talking about transition-related resources for older adolescents as they transition into young adulthood. So we tackle that critical period when an individual graduates high school and takes that huge leap into the “real” world.
In many parts of the [00:02:00] country, this is an area of relatively little support for individuals. We talk through all the considerations there and how to provide more support as practitioners as these individuals go from a pretty well-supported or well-structured educational environment to a much more ambiguously supported reality. So if you work with older adolescents or young adults, this is chock-full of information for you.
So without any further delay, let’s get to my conversation with Dr. Rebecca Resnik.
Hey, Rebecca, welcome back.
Dr. Rebecca: It’s great to see you again.
Dr. Sharp: Likewise. [00:03:00] We talked about this a little bit, but it has been probably six or seven years since you were on the podcast the first time. You were definitely within my first 50 episodes, I think, and I can’t believe it’s been that long.
Dr. Rebecca: Look at the empire you’ve built.
Dr. Sharp: Is that what it’s called? I don’t know. No, thank you. It’s been fun.
Dr. Rebecca: It is certainly a lot bigger.
Dr. Sharp: It is. It’s the best part of the week though. I love doing these interviews because I get to talk with awesome folks like yourself about any number of topics that are relevant for testing. So thanks for being here again.
Today we are talking about, I called it transition-related resources, but it’s this idea of supporting older adolescents as they transition into young adulthood and the fact that is a gap in services in a lot of places and I think it’s super important to talk about.
I’ll start with the question that I always start with, which is, [00:04:00] why this is important to you? You do a lot of things, but why did this become important to you?
Dr. Rebecca: This is important to me because before I started specializing in neuropsychological testing, I was a special education teacher. And so I’ve been on both sides of the table when the team has to review the IEP and make the plan for what’s going to happen for this young person, how are we going to launch them?
I have seen a lot of terrible psychological evaluations, as I’m sure you have, too. It’s very frustrating when you’re the one who’s supposed to take the data in the psychological evaluation and use it to do something for a student, and it’s useless.
So one of my passions is trying to help psychologists and neuropsychologists understand when you’re writing a report, how do you make it useful? How do you create a report that is going to have some meaning and some impact and make life [00:05:00] better? Because when we don’t understand transition, we hurt our patients.
That’s not just me complaining about things, wagging my finger at everybody. That’s the data. We have a lot of young people out there, particularly our autistic young people who are not gainfully employed, who don’t have a social life or integrate into the community. We have a lot of folks with intellectual disability who are sent out of high school, and the expression in the parent community is they fell off the cliff.
Once these folks are out of K-12 education, there’s often no safety net for them. And so this has been troubling me for years and years, and it got to the point where I was like, this is bothering me so much seeing all of these young people who weren’t properly taken care of, I got to talk to Jeremy about it.
Dr. Sharp: Yeah. It sounds like you have a similar experience [00:06:00] that to us here in our area, I imagine similar in lots of parts of the country where unless these young adults are notably impaired, pretty severely impaired in whatever way, they fall through the cracks and like you said, fall off a cliff once they get out of school. There aren’t that many services for moderately low functioning or moderately high needs. However, you want to frame it.
Dr. Rebecca: Yeah, and how we frame it is how we think about it. In terms of the problems that I’m seeing, and I’m over here in the East Coast, I’m in the DC metro area. We are like the classic savage inequalities where we have a very affluent population base, but then less than 5 miles away, we have pockets of extremely marginalized [00:07:00] youth in communities in DC and Southern Maryland.
This is so important because it doesn’t mean that we have to write 50-page reports, it doesn’t mean that we have to do something tremendously different. It means that we have responsibilities to understand how transition works so that when we do our assessments, we can assess with transition in mind.
If the psychologist is expecting the school team to know what to do or to take care of everything or the family to know how to advocate or the young person to know how to advocate, we wind up with a lot of young people who I’m now seeing coming through my office, they’re young adults, they’ve never launched and they’ve never had successful relationships and friendships.
No career training. A lot of times, no benefits, no social security, no vocational rehabilitation services. [00:08:00] They’re living with their parents all by themselves and that’s not a life. We can certainly do better. As psychologists, we can do a lot better without redoing a whole bunch of the way that we write reports.
So what I’m hoping to talk with you about is how we can frame our thinking around transition so that young people don’t fall through the cracks and families know how to go into those last years of K-12 education ready to advocate. And so the young people can advocate for themselves as well.
Dr. Sharp: I love that. I wonder if we start by setting a little context and putting this in contrast almost with what it’s like before 18 and then what happens after 18. So I’ll put forth how it works here. You can agree or disagree or share a different perspective.
At least here, our [00:09:00] adaptive services, we call them Community Centered Boards, but it’s like they’re community entity that assists individuals with developmental delays and so forth. They handle things from 0 to 3 or birth to 3, the school district takes over from 3 to 5 for a preschool early intervention thing. Schools handle it from 5 to graduation and then18 plus is when that Community Centered Board steps back in to provide adaptive services for individuals who need it again; higher needs individuals with developmental delays or whatever it may be. How does that compare to the setting where you’re at?
Dr. Rebecca: I’ve seen kids and young adults from Maryland, from DC and from Virginia. Occasionally, we get somebody from Delaware, Pennsylvania, or occasionally, West Virginia. In this area, we’re not a big state like Delaware but we’re population [00:10:00] dense area that covers three different municipalities.
So what we have here is that during the early years up until age eight, students are often coded with a catch-all service delivery code. It’s not a diagnosis, it’s an eligibility code under special education called developmental delay.
A lot of parents don’t understand what that means. Basically, it’s a way to make sure that a young person can access services, but you’re not quite sure where you’re going to land diagnostically speaking for a while.
So what sometimes happens is that kids have to be assessed. They have the right to be assessed every three years through K-12 public school education. That’s a legal standard. They can be assessed more and in some cases they should, but parents have the right to waive their right to be assessed every three years.
So we often [00:11:00] have kids where maybe they transitioned out of elementary school without updated testing since before they were eight. And so they’ll come into middle school still with the eligibility code of developmental delay. And so the parents will have never been given a good introduction to who’s your child, how does their brain work, what’s their strengths and weaknesses, what’s the trajectory; what’s the rate and level of progress?
And so when I was a middle school teacher, I saw sometimes parents being told right in the middle of an IEP meeting, oh, by the way, your child has intellectual disability, didn’t you know? How could they know? I remember very vividly a father breaking down in tears. We had other families where they were extremely upset and this is no way to do business.
Maybe they get an assessment [00:12:00] in middle school but oftentimes when they head into high school, particularly now that we’re talking about post-pandemic, a lot of these young people don’t get a really comprehensive assessment. They don’t have somebody coming in and saying, okay, we’ve got to update IQ, we’ve got to update adaptive function, we’ve got to update speech-language with the intention of we’re going to be very mindful about transition and how we’re going to prepare you for life.
The federal mandate is that transition planning has to start at 16, that’s way too late for a lot of our families, especially when we have young people with a lot of high support needs. When we think about support needs, support needs is how we should be thinking about this in terms of not so much what’s this person’s diagnosis specifically but are there needs intermittent, [00:13:00] limited, extensive or pervasive?
When we think in terms of what kinds of supports, how often, what level of supports and how do we put a program in place that is measurable, goal-oriented, and comprehensive so that this young person can transition into a high quality of life, that’s not happening in a lot of cases. Even in a very privileged area here, the last data I looked up said that about 40% of IEPs don’t have what would match the federal mandates for a transition plan.
If you review IEPs, you’ll sometimes see in there, like an expert witness case I did where the transition plan was student will work at the concession stand in a local sports arena, not a transition plan.
Dr. Sharp: Okay.
Dr. Rebecca: You must see this too, when you’re reviewing the IEP, [00:14:00] sometimes you see a well-thought-out transition plan, but a lot of times you just see the same goals over and over again.
Dr. Sharp: Yeah, absolutely. And then they have a hard time making that leap. There are so many factors involved in this. I have hypotheses, but I’m curious what you think might be happening here. Is it just a matter of school staff being overwhelmed? Is it families not advocating or kids/young adults not advocating for themselves? What are the factors you think are contributing to the drop off here?
Dr. Rebecca: I have a lot of thoughts about this. I’m sure you do too, because we’re both at points in our career where we’ve been in this long enough that we’ve seen trends come and go and things change over time, particularly pre-pandemic versus post-pandemic.
I don’t envy the folks in schools, particularly in this [00:15:00] post-pandemic era, where so many kids fell behind, so many school psychologists are super backed up, IEP teams are seeing kids with incredibly complex needs that they weren’t seeing before.
I don’t want to act like, oh, the school is the enemy. They’re the problem because you do sometimes see IEPs from more marginalized, low-resource school districts where they don’t have a lot of transition support teachers. They don’t have a lot of specialists. They don’t have a lot of job coaches and folks who do a lot of community outreach but that doesn’t mean that we can’t put together a decent plan and try to make something work for young people.
As far as families go, I do want to talk a lot about families in this because in the culture and the belief system of the families, their resources has a lot to do with how we’re going to [00:16:00] plan for transition, but we can’t really change so much of, our school is going to have a lot of resources and know what they don’t know.
We can definitely spend some time educating families.
If we don’t have that kind of time, we can connect them up with social workers, pupil personnel workers, advocates, social resources and community advocacy groups. There’s no shortage of information, but if we don’t think to connect families up with like oh, here’s your local chapter of The Arc, or here’s your local chapter of TASH, for example, or here’s autism self-advocacy network, if we don’t think to do that, we can’t be sure that somebody else is going to take over that role.
In terms of psychologists, and I’m thinking broadly about psychologists, neuropsychologists, school psychologists, I think part of what is happening here in terms of why young people fall off the cliff without proper information to put a plan together [00:17:00] is that a lot of us aren’t all that comfortable with the idea that there are more significant disabilities and that sounds like a weird thing to say.
Dr. Sharp: I’m intrigued. Yes, what have you got?
Dr. Rebecca: Okay. There’s an interesting movement called the #SayTheWord movement. The disability advocates are using this hashtag to talk about disability as diversity. What they’re saying makes a lot of sense is that we need to get comfortable with the idea that, yes, there are disabilities, they make life difficult and sometimes they impact the quality of your life.
When we make ourselves comfortable by using little euphemisms, Dr Aaron Andrews, for example, has done a wonderful book and does continuing education on [00:18:00] this, we have to get out of the pressure to not say that somebody has a particular type of disability. We find ourselves under pressure to say oh, learning difficulties or learning differences, or they have different learning style.
I’ve even had parents say, I don’t want to think of my child as a struggling reader. I get that, as a parent, we don’t love the idea that a kid is struggling and yet if you watch a dyslexic kid you’re trying to get through the GORT-5, they are struggling. So we have to be comfortable with saying, yes, this is a disability, let’s think about how can we get you your rights so that you can self-advocate. The three pillars of self-advocacy are: know yourself, know what you need, know how to get what you need, but also find your people.
If we’re [00:19:00] using these little euphemisms, like learning differences or differently abled, we’re not communicating effectively with other professionals, but we’re also not helping that person develop a positive sense of themselves as a person with a disability, that’s part of them but not the only part of them. We are not our diagnosis is what disability advocates will say. I would love to hear what you were thinking, too.
Dr. Sharp: No, I think that makes a lot of sense. It’s this idea that in an effort to be, let’s just say supportive of folks or affirming or empowering or maybe doing them a disservice by not being clear and explicit about the diagnosis or the disability or whatever it may be.
Dr. Rebecca: The last thing I want to do is say that we shouldn’t be affirming, empathic and empowering, absolutely but at the same time, there are disabilities that lend themselves very well to the [00:20:00] social model of understanding disability in deaf culture in particular. The deaf culture is saying, hey, we’re not disabled when you guys aren’t around. That’s a really important thing for us to understand.
I do love the movement towards being affirming and empowering; that’s what our role is supposed to be as psychologists. The last thing we want is for people to leave our office, go cry in the car and feel like they’re left without any hope or sense of what they’re going to do next and how they’re going to help their child. That’s not what we’re going for.
There’s different ways of looking at disability. Disability is such a heterogeneous group. We can’t really talk about, oh, there’s the disabled and then there’s the rest of us, because we’re going to pass fluidly through those two different populations, and that’s all of us.
There’s not a one size fits all model that we can [00:21:00] say like oh, disability is this. There’s disability where the social model of understanding disability is understanding disability not as part of the person but as a flaw of society and deaf culture comes to mind which if you ever had the privilege of working with someone from the deaf community, very rich culture that has a strong tradition of self-advocacy.
But then there are other disabilities that they really are part of the person and they need more than accommodation. So different types of disability will sometimes fit the medical model really well. It’s not like the social models are good and the medical models are bad, if you have a child with muscular dystrophy or a seizure disorder or juvenile rheumatoid arthritis or gosh, I have a relative with irritable bowel, you’re not going to say, oh, your irritable bowel must bring you so many gifts. No.
Sometimes the [00:22:00] medical model of thinking about how do we intervene and provide care, and sometimes disability does come with significant care needs as well. If you have a tracheostomy tube, for example, you need a nurse around or someone who can suction out that tube on a regular basis.
So this is really complicated and it doesn’t work for us as psychologists to be rigidly thinking about things one way or the other, it’s all about this particular patient in front of us; what does this person need? What are their goals? What do they want to get out of life after school?
Dr. Sharp: Yeah, I think that’s a great point. You had asked earlier what I might think and contributes to all of this, I wanted to circle back to that a little bit and throw out some thoughts. At least in my experience, I see a few things.
One, the [00:23:00] timeline is huge for people. I don’t think that we, myself included, I’m speaking for myself, anticipate the needs in enough time when we’re working with kids at that point because at least here in Colorado, we tell people to get on the wait list for waivers and services and so forth at 13. And so I don’t think a lot of us are thinking, hey, I’m evaluating this 12 or 13-year-old, I need to be looking through this lens of transition-related resources at that point. We maybe drop the ball a little early.
But then once I get to that point where they’re 16, 17, 18, it’s almost like a hot potato thing where it’s like, who handles this? Is it the psychologist? Is it the school? Is it the advocate community? Is it the Community Center Board? And so it ends up getting passed around and dropped and nothing happens [00:24:00] or it’s just this piecemeal thing. I don’t know if that rest.
Dr. Rebecca: I love the hot potato. I’m old enough to remember playing hot potato.
Dr. Sharp: Right.
Dr. Rebecca: I know it’s true because then you have a gray area, who’s going to do all of this work. Are you going to get that career training? Is it going to be the public school program? Is it going to be the private sector? Is it going to be agencies? The government? Who’s going to do that? And with everybody has budget shortfalls and long wait lists, nobody wants to take on a lot of that.
I did a lot what you said about the timeline and anticipating the needs, if you have a child that you’re assessing and even a very young child, but the higher and more complicated the support needs, the more you need to start thinking about transition very early on. This is hard for a lot of families because [00:25:00] it’s hard for families to think about their child being ready to launch into the world when they’re maybe only five years old.
That’s where we as professionals come in with our clinical experience. We’ve seen many kids and we know sometimes development is very hard to predict, but we want to establish that baseline because the baseline is so important.
A lot of times when I see an assessment from a school and it’s just a BASC, could we not do any better than that? Sometimes they try to test the child and the child is too stressed out by it, not available, they’re overwhelmed and so getting some actual data is a problem, but establishing that baseline and starting to help the family get a sense of your child’s support needs are going to vary compared to what we think of as like typical support needs. So their [00:26:00] rate and level of progress may be different. There may be different things that they do.
I see a lot of kids who have complicated support needs. I’ll look back through the records and often what I’ll see is that nobody’s really been honest with them about how significant their child support needs actually are. I’ll see people twist themselves into pretzels metaphorically speaking to avoid having to say to the family something that might be disappointing or sad or hard to say.
It’s frustrating because we’re healthcare providers. It’s not our job to always say, oh, your child has such a beautiful smile. Your child lights up the room. Your child’s a great artist. I’m a big believer in strength-based assessment, especially for transition, because that’s how you’re going to figure out what kind of job and career training, or are they going off to college?
Those [00:27:00] strengths are what’s going to pull them along but there is a lot of passing the buck that I see where people don’t want to make a diagnosis, particularly of intellectual disability. People will come up with any kind of reason, or they won’t even say anything.
School psychologists are in such a bind because they’re perfectly capable of diagnosing a lot of different conditions, but a lot of the times they’re not supposed to diagnose anything. And so you have a kid where they’ve had four psychological evaluations and nobody’s ever said to the parents we need to start talking about whether diploma track is right for you.
We need to start planning for a special needs trust, or how are you going to get career training in high school? How are you going to learn some life skills so that you’re not living in your parents’ basement all by yourself playing video games all day.
And yeah, you’re right, I love the fact that your practice, you’re doing this at [00:28:00] 13. Technically, we could wait until 16, but the IEP team and also taking a leadership role that can definitely push it towards the more that the child has high support needs and complicated support needs, the more the IEP team needs to be thinking about meeting those complicated support needs well before the legal technical drop dead date.
Dr. Sharp: Sure. I wonder, do you go so far as to try to front-load when kids are young? Say we run into a four or five, six-year-old. At that time, things change, of course, who knows, but at that time, maybe they do have an intellectual disability or profile that points in that direction.
There have been many times in the past where I’ll say at that point, hey, nobody can predict the future. I’m an optimist. I want to see the best for everyone. [00:29:00] Here’s the best case scenario and as a heads-up, I would be very on top of getting these regular evaluations every year, like make sure you come back and see us before 12 or 13, because that’s when we may need to start looking at transition-related services. Is that something that you would support in your practice or is that overkill? I’m curious how you approach that or how you prepare parents?
Dr. Rebecca: Am saluting you right now. I’m impressed with that. None of us want to say to a parent, oh, gosh, your kid’s never going to do X, Y, and Z. That’s not pleasant and a lot of times we don’t really know but
then again, when we’re seeing kids with, let’s say, some genetic anomalies that impact multiple body systems and have cognitive, language and learning [00:30:00] impact, you’re so much better off if the family is at least starting to think about a more individualized education program for their child.
But you would let us around to the certificate versus diploma topic. I imagine this is one that you spend a lot of time thinking about too, how to broach that topic with families or do families come to you and often asked?
Dr. SHARP: We don’t get that a whole lot for whatever reason. I’m not sure if maybe our school district is a little better identifying and catching those kids early. I’m not sure. I don’t have a great hypothesis on that but it happens here and there. I don’t know that I would explicitly say certificate versus diploma, but I do talk with families a lot about, say, applied or life skills [00:31:00] classes versus abstract trying to push toward algebra, geometry, trigonometry.
We’ll talk with them about that kind of stuff like hey, we need to be looking at more applied education for the next few years, things that will actually work. I’d love to hear this certificate versus diploma discussion that is coming up for you.
Dr. Rebecca: I love the fact that your school system is doing a lot of the heavy lifting there and helping families think about their options in a very mindful way because a lot of times when families go to meetings, they think they understood what happened but unless they’re privileged enough to have an advocate there, or maybe a social worker, pupil personnel worker, a lot of times what the school team thinks that they’ve communicated to the parents is not at all what the parents took from that meeting.
Especially in this time when [00:32:00] they’re rushed so they’re getting families in, out. And families leave r not feeling listened to much less empowered. So the certificate versus diploma thing is a big deal here in Maryland and DC because we don’t have levels of ways to complete high school. It’s like you get a diploma or you don’t is the way a lot of people think about it. 21 states have various tracks that people can pursue; is Colorado one of them?
Dr. Sharp: Yes. We do have different tracks.
Dr. Rebecca: I love that. The idea of one size fits all, nobody would argue that everybody in the world could become a professional basketball player. I say that because basketball in PE class for me was particularly humiliating. I’m short. I’m [00:33:00] stubby. I’m slow. I can’t throw. Imagine if succeeding in basketball was like the way that you became a success and could have a high quality of life, and that was the only way, I would be miserable all the time.
I would not want to get the basketball diploma. I would be like isn’t there anything for those of us who don’t want to play basketball or not particularly good at basketball, for whom basketball is pretty stressful ordeal, humiliation abounds.
What we have out here is, we have the diploma track. Psychologists should be at least a bit familiar with what the diploma track in their area includes. You did a great job naming that because what a kid has to do in our neck of the woods, it’s all an academic diploma. It’s all a college preparation [00:34:00] diploma.
Back in the old days, there were what they called commercial diplomas. And so you could go into career preparation and learn a lot of really valuable skills, and it wasn’t looked down on. But now unfortunately, it’s like college preparation or sorry, you’re out of luck.
Our diploma requirements here require a lot of abstract thinking, high working memory demands. We’re talking about algebra 2, we’re talking about having to take a biology competency test, we’re talking about three years of science, two years of foreign language, tech education, health. It’s a lot.
If you’re seeing a young person, even a very young child where the trajectory of their academic progress isn’t going to put them in a good position to complete a diploma, I wish we could get rid of this stigma around, oh, don’t settle for a certificate or a [00:35:00] certificate’s meaningless. I’ve actually seen that a lot of places on the internet including special education advocacy sites and nothing could be further from the truth.
What a certificate of completion actually means is that you are going to craft your own high school program around your preferences, your goals, what’s important to you, what is the young person like and what do they want to do. When I was a special education teacher, for my kids, I had some who were on diploma track and a lot of them were miserable. They didn’t want to read Lord of the Flies. They weren’t happy.
Imagine if you’re trying to do that with a 2nd or 3rd grade reading level and everybody’s pushing you to do a whole bunch of stuff that feels extremely hard and you’re not good at. It’s not surprising that a lot of them felt like screw this. This is nothing for me. This isn’t about me. You all are just [00:36:00] pushing me to do this stuff that I don’t see the value in. I get that.
But then I had students who were on certificate track and the best part of their day was the time when they got to go to, in our area was the Edison Tech Center where they would go and learn career skills. So they would go and learn to hang drywall, come back and be like, guess what? I learned how to hang drywall, my uncle’s going to get me a job in his company and I’m going to make more than you.
Dr. Sharp: They’re totally right.
Dr. Rebecca: They’re totally right. For them, that was what they wanted to learn. It’s what they wanted to do. It’s not fair for us to hold out this idea of the only way you can be successful or respected is to take all of this one-size-fits-all all program.
For parents in our area, this is a huge emotional [00:37:00] weight. A lot of the folks who come to us in the private practice world are frustrated because they’re saying, I don’t want my kid taken off diploma track. I’m fighting with the school because they’re trying to take my kid off diploma track.
There’s this adversarial relationship where the parents are grieving what they’re feeling like is the loss of a big dream. They’re feeling like what do you mean? My kid won’t even graduate from high school and that it’s really not what it means. They can still go to prom. They’ll still walk at graduation. They’ll still be in the chorus concert.
One of my son’s friends was in the Life Skills program at high school. He was Jean Valjean in our school’s production of Les Miserables. It was amazing. So I’m a big proponent of crafting a high school program that is really meaningful to you and is based on your students’ strengths.
You had a school psychologist on two [00:38:00] episodes ago, and I really liked how practical she was. Let’s focus on the strengths. What’s this kid good at but also, what does this kid really want?
What the parents want for their child is often based on not knowing a lot about first off, their child’s rate and level of performance, but also what actually are the requirements for a diploma and what do we lose by going diploma track? Because there’s a response cost; when we make a choice to do something that takes time and energy, we can’t do another thing that takes time and energy.
If we’re thinking about you wanting to have a high quality of life and potentially go to college, people think that if you go with a certificate of completion, you’re an individualized program, that automatically, you’re never going to be able to go to college, and that’s actually not true. There are many community colleges [00:39:00] all across the country that have post-secondary programs. You can go, you can take courses.
Near our house, there’s a special life skills program called the Challenge Program. There’s Career Prep. There’s also a lot of colleges across the country that have programs for students who are autistic with higher support needs, students with intellectual disability like University of Maryland, George Mason University, Autism Delaware. There’s a cool website called thinkcollege.net, which I think you put in the show notes.
If you have a family that is like I want my kid to have that experience of going to college and challenging themselves, this is a whole new world. It is no longer the case that if you studied hotel management in your high school program that you’re never going to be able to go to college, the doors are now open.
[00:40:00] Dr. Sharp: I love that. Clearly you have thought a lot about this and worked with a lot of families on this path. The thing that you touched on that caught my attention is the dual objectives that we have to contend with, which is the actual, I don’t want to say concrete but the more straightforward assessment, the numbers, the data and the diagnosis, but then there’s the emotional component that comes into play with families, parents, maybe the individual themselves about what one path or another means for their kid.
So maybe there’s a question in there, maybe I’m just reflecting that that is hard sometimes. If there are any, I don’t know if you’d say strategies or ways that you’ve learned to talk with families over the years [00:41:00] who may be grieving around what they perceive to be the ideal future for their kid, I would love to talk about that.
Let’s take a break to hear from a featured partner.
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All right, let’s get back to the podcast.
Dr. Rebecca: Every family is different and some families embrace the positive disability identity. We’re going to get out there and become advocates. My mother, that was her. She became the mother lioness who was going to stand up for her child in IEP meetings. Other parents need a lot more time and holding to almost get to know their child over time.
We can’t pretend that if [00:44:00] we see a kid at five years old, that we have a crystal ball and we’re going to say this is exactly their trajectory, things will change. Sometimes things change for the better, but sometimes they don’t as well. Sometimes kids have a really good start and then once the abstract reasoning demands and the workload gets higher, and the working memory challenges, they’re having a harder time.
This is the reason that I’m fairly optimistic that we won’t be completely replaced by AI and robots. It’s because the scores are not hard to generate. We don’t even really need to be there to generate a lot of scores.
My husband’s an AI researcher and I’ve gotten to see all of these amazing computer assessment natural language processing, but what those will never replace us in is how do we make meaning out of this. [00:45:00] Scores are one thing, but the special thing about psychologists and neuropsychologists and why I love this profession is that we’re coming to this with the data, with the curiosity, the empathy, and the desire to imagine a life for this kid and how do we make that meaningful?
The scores, they are important though. When you look at the DSM now, I shouldn’t get started too much on the DSM, but there’s pressure, not just from the DSM for us to rely less on IQ test scores. IQ test scores are, they’re really important for us to stay grounded and for us to make observations, for us to communicate things to other professionals and to parents as well.
In terms of nuts and bolts, [00:46:00] we need to make sure that when we’re speaking to parents, we’re being sensitive to what’s their emotional feeling about this? What’s their cultural understanding of disability? I can’t assume that somebody I’m talking to is thinking the same way about what it means to have a child with differences and disabilities, whether hidden or obvious to anyone who sees the child.
Some of the hardest conversations I have to have are the ones where I’ll talk to them about a particular school, a particular type of classroom, a particular activity. Sometimes the parents will come back and say, I looked at that and it’s horrible. I’ll say, oh my gosh, tell me what you saw. They’ll say, I don’t want my kid in a classroom with kids like that. I don’t want them hanging out with kids like that.
I had one mother who said, my son would never want to be friends with kids like that. Oh my gosh. That [00:47:00] sense of internalized stigma, you love your own child. You would throw yourself in front of a train for this beautiful child. They don’t often see what the support needs actually are, they see progress. They see, a year ago, he didn’t know his alphabet and now he does.
It’s sometimes a difficult conversation to help them understand their child in context of what’s going to be expected in this particular community, in this particular culture. Out here in the DC area, it’s a very high-pressure, go, go, go type of environment. And that is a harder environment for folks who need more time to learn things, more time to master skills.
It’s something I’m always working on and always thinking about. It’s the [00:48:00] kind of thing that wakes me up at three in the morning; how am I going to do this feedback? Have you read Feedback that Sticks?
Dr. Sharp: Oh, yeah. Classic.
Dr. Rebecca: That’s a good one. Somebody stole my copy. So whoever stole it, you need to give it back.
Dr. Sharp: Somebody stole my copy too. If you’re out there listening. I’m sure it was one of my postdocs or interns or something. I’m coming after you. Yes.
So we’re talking a lot about the families, their role and parents. I know you mentioned self-advocacy earlier in the conversation, but I wanted to shine a little bit more of a spotlight on that. I feel like self-advocacy is, I don’t know if I call it a buzzword that almost minimizes the importance, but I’m curious your perspective on self-advocacy and how these young adults can take the reins a bit in this whole process.
Dr. Rebecca: That one’s twofold. On the one hand, I am thrilled to see people taking on [00:49:00] a positive identity as like I’m a person with disability. Sometimes they’ll say with this difference and getting together with other folks to make positive change. Sometimes that’s lobbying, sometimes it’s sharing stories of lived experience.
Sometimes you have folks partnering with researchers like last lecture I saw with Simon Baron-Cohen. He had two folks there with lived experience who were commenting on the findings and their own life. The more we can own what we need, again, the three pillars are know yourself, know what you need, and know how to get it.
For the folks who are able to self-advocate for themselves, more power to you. I want my report to be something that makes that possible for you. That opens those doors to community and resources.
We have to remember, too, that not everybody [00:50:00] is going to be in a great position to self-advocate for themselves. This is a tricky area where sometimes people’s disability leads them into situations where they could be taken advantage of. The formal term for that is undue influence.
I have worked with young people who had been the victim of scams. I worked with a young man in his mid-20s, he was sexually attracted to young boys and his parents were terrified of what was going to happen if potentially he hurt a child, or even if somebody thought he was going to hurt a child, what could happen to him because he wasn’t able to exercise wise judgment to avoid some really significant problems.
I assessed a young man who was trying to talk to a group of [00:51:00] girls. He was out in the community. He sees some pretty girls. He tries to talk to them. They call the cops on him. The police tell him sit down. He sits down, but what he didn’t understand was the policeman sit down and stay sitting down. So he sits down, then he gets up. The police slam him down and break his arm.
We can’t assume that everybody is going to be ready to make all of their own decisions or maybe not at the same timeframe. I have teenagers, not every 18-year-old should be driving, making life decisions. Someone merges not ready. That’s okay.
And so we get into this area that’s fraught with a lot of emotion, which is, what about when you have somebody who is going to need support, one of their support needs is to make good decisions. The most restrictive version of that is guardianship. [00:52:00] And that it’s gotten a bad rap partly because of Britney Spears. Do you remember the Free Britney?
Dr. Sharp: Oh, sure.
Dr. Rebecca: I think there’s a lot of misunderstanding of what a lot of families are intending to do when they’re seeking guardianship but guardianship is the most restrictive. I’ve never seen a guardianship case where I felt like the family was doing it to take advantage or to rob a child or relative of the decisions that they were able to make comfortably.
If you’re not comfortable with guardianship, you can do supported decision-making agreements where you can have an attorney draw up a more individualized agreement and a legally binding agreement. You can also have power of attorney for specific things.
Let’s say you have an 18-year-old who has developed psychosis, you may want to have [00:53:00] power of attorney for medical decisions so that you can help that young person if they’re in crisis and they need to be hospitalized so that you can get to the records and advocate for them and make sure that their prescriptions are filled.
I don’t want to demonize these things because they often out in the media are seen as oh, you’re trying to take people’s rights away but we do have to think about the full continuum of, there’s all kinds of people out there. One size fits all is never one size fits all. It’s one size fits some. And so we got to focus on the person in front of us; their family, their culture, their goals, and individualize it around what’s going to open the most doors for them so that they can have a really high quality of life.
Dr. Sharp: Yeah. I like the way that you frame that. I wonder if we might pivot to more concretely talking about our role as psychologists, what this looks like, the evaluation process, the [00:54:00] recommendations, the connecting with community resources. Really diving into our role in this whole process and what that looks like.
Dr. Rebecca: We’re going to geek out. Okay. Now that I’m over 50, I find that a lot of what I was taught through the years is either outdated or we figured out it was wrong. A lot of things that I learned as gospel truth were wrong, whole language anybody.
I learned, when I was in graduate school, that the people with autism, we use person-first language back then that they didn’t want friendships, that they weren’t interested. Oh my gosh, what were we thinking? So in terms of assessing the transition in mind, it’s this like Stephen Covey’s idea to begin with the end in mind. We’re thinking about quality of life and the maximum level of independence, choice, and possibility for this [00:55:00] person that’s going to be a good fit for them.
I follow the standards of the American Association of Intellectual and Developmental Disability Standards. I think that guide is much more informative for us as psychologists than the DSM or the WHO guidelines. This particular guidebook, you can get it on Amazon. They’re emphasizing using multiple sources of data.
As you know, this is a civil rights issue, we’re no longer diagnosing people with intellectual disability based on like a cutoff score. And so the trend has been to think more about adaptive functioning. And so now we’re being asked to go beyond just thinking about adaptive functioning scores to support needs. So the real emphasis is as we [00:56:00] move into the century kicking and screaming, we need to think more about support needs and get less hung up on a particular score.
But that said, the standards tell us that we should be focusing on the Full Scale IQ. This is a difference from when I was first out there, if you had any index score that was above a 75, people wouldn’t diagnose intellectual disability. It didn’t matter if the full-scale was in the low 50s, if there was one score that popped up, it was, oh, no, I’m not going to do that to this child. I’m not going to label him/her/them, whomever.
What they’re really saying is we need to think about the full scale, not only is it the most reliable, but it has the most predictive power for how hard are they going to find life in our complicated [00:57:00] society. So really looking at the full scale.
Adaptive functioning is problematic as you know because what a lot of folks do, particularly in schools, I’m not picking on school psychologists. I know how little time they have. I know their caseloads are huge. They are tired, overworked people, and underpaid but a lot of times what they’ll do is they’ll send out an ABAS for example, the Adaptive Behavior Assessment Scale, and get a parent and a teacher to fill it out.
People talk about IQ tests as being problematic and to some extent they are, but we know they have good predictive power. I have more problem with Adaptive Behavior Rating Scales as being sources of potential cultural bias. They’re also often out of date. When you pick up the ABAS, isn’t there still a question about do you use a pay phone?
Dr. Sharp: Yeah. I [00:58:00] can’t remember that exact question, but I know what you’re talking about. There are many questions where it’s like, oh, this seems like …
Dr. Rebecca: They ask questions about, does this child walk out into his or her neighborhood and go to a friend’s house? Well, societal norms have changed. Most kids don’t do that anymore.
Dr. Sharp: That’s true.
Dr. Rebecca: Cis girls are generally not given that kind of freedom to wander around and go to a friend’s house. The other big problem with our adaptive functioning scales is we have the bias, the culture, they get out of date. We also have human bias.
I understand that people were like rating scales. Yes. They’re the only way to go, but human beings fill out rating scales and there’s no human being in the world who fills out a rating scale, who doesn’t have [00:59:00] biases and blind spots. I filled out rating scales for my own kids when I got them tested. I knew the factor analysis structure and I found myself wrestling with like my mom psychologist self.
Dr. Sharp: It’s so hard
Dr. Rebecca: I’m sure you’ve had the experience where you see a kid where they have significant support needs and their developmental trajectory is very different from the typical kid. The parent will fill out the rating scale all average.
Dr. Sharp: Absolutely. That’s happened so many times.
Dr. Rebecca: I know. Or the reverse where a teacher is, you may have a kid who’s perfectly capable, but maybe they have some externalizing behaviors and the teacher will fill out everything as the worst score as possible. Sometimes I get this for a kid who has gotten one B in their life and the teacher is filling out everything as if this kid has the highest level of support [01:00:00] needs possible.
So what do we do about this is we’re looking for convergent validity here. We want to assess their conceptual development, their social development, their practical development. I am a big fan of getting a speech-language pathologist into the mix or doing my own language assessment, because having that language piece in there. I would rather assess and see what they do with an on demand test than trust that the parent is understanding what the test developers meant when they designed those communication scale items.
The other big one is you looking very closely at their academics. If you have a kid whose parents are thinking about having them do diploma track, let’s say they’re 14 years old and all of their academic skills are like below the 3rd grade [01:01:00] level, this is going to be really hard and it’s not going to be pleasant.
Sometimes we’re going to get teachers who will just socially pass the kid along. I was involved in a due process hearing where that had happened to a kid in a local school where the teachers probably out of good intentions just push them through and give them a diploma without them having learned anything and that shouldn’t happen.
I want to assess their academics. I want to see work samples. If I can get the speech pathologist report, I want to see that. I want to see the last three psychological evaluations so I can get a sense of this kid’s trajectory.
It’s so important that if we’re talking about someone whose support needs are consistent with intellectual disability, we need to make that diagnosis. [01:02:00] We need to make it clear that onset occurred before 18 is great before 22 is essential and make sure that we’ve documented that it is severe and persistent and that it’s not just a temporary thing for social security eligibility, the guidelines are out there.
I think I sent them too in the resources. We can save families a whole lot of grief if we cut and paste some pieces from the Social Security Administration’s guidelines, put those in our report and answer those questions. Is it severe and persistent? Was the onset before age of 18? Do we have really significant problems with adaptive functioning, thinking, learning, concentrating? Do we have support needs related to activities of daily living and basic functional tasks that we all have to do?
All of this is out there online but if we don’t know [01:03:00] about it, then what happens is you have a lot of kids who graduate or don’t graduate. They get out there and their parents are like, I need some support here. I need Social Security. I want to get them signed up for Medicaid.
I want to get them connected up with vocational rehabilitation. I want to get them some career training. I want to get them eligible for different types of supported housing in the community. Unless your report is providing some information to meet the desired information that the state agencies need to see, they’re going to have to come back and pay for another psychological evaluation about, and that’s not good.
Dr. Sharp: That’s a good point. You can almost think of it like evaluations we do for the MCAT or the LSAT or something like that, where there are some really specific language and criteria that they’re looking for. If we can think about that ahead of [01:04:00] time and put it in the report, it can save families a lot of hassle.
Dr. Rebecca: Yeah, it’s a lot harder to get MCAT accommodations than it is to make sure that the social security stipulations are met. And those are only for intellectual disability. There’s 11 different categories. There’s intellectual disability and autism, and all sorts of ways that we can qualify someone for these social services. That’s our tax dollars at work; the good things our tax dollars do.
If we’re not aware of what information has to be there, then they’re out of luck. Particularly notifying parents of things like see if you can talk to an attorney or a social worker to set up a special needs trust. Think about is there a supported decision making need or a guardianship need?
Think [01:05:00] about this before the young person turns 18 because once they’re 18, they’re an adult in the eyes of the law and not everybody who’s chronologically 18 is ready to make wise decisions and assume all of that responsibility, never mind, fill out all the forms that come with being an adult.
If we’re proactive, if we’re thinking about transition very early on, then we can make sure, even if we aren’t comfortable laying all of that out, making sure the families know like don’t let your child leave high school without that final report that I sometimes refer to casual as your exit ticket. That’s your last assessment that documents your present level of academic and adaptive performance. You must have one last psychological evaluation in high school.
If you’re going to have significant support needs that need to be met that are not the [01:06:00] typical of peers with either more minimal disabilities or less support needs, the parents absolutely have to know that they shouldn’t waive their right to that last assessment because if they do, the moving walkway comes to an end. Once you’re out of K-12, it is almost impossible to get all of that information and try and go and apply for community and social services without that documentation.
And that’s when very sadly they’re either lost and they don’t know where to go, or they have to then spend a bunch of money to get a private evaluation or private attorney, and we can spare them that.
Dr. Sharp: Absolutely. I wanted to ask you about a situation that comes up in our practice I’d say fairly often, curious if you run into it and if so how you might tackle it. We have several evaluations, I would say, over the course of the year where we’ll have young adults who [01:07:00] are, they certainly don’t meet the IQ threshold so their IQs might be in the 80s, 90s, maybe even higher than that, but the adaptive functioning is legitimately very low. And that could be due to any number of things. Maybe it’s executive functioning or mood or autism or any number of things.
And then we run into this little conundrum where the entities around town are reluctant to provide services because they don’t meet the “cutoff”. I’m curious, do you run into that, first of all?
Dr. Rebecca: A lot of my students when I was a special educator were in that gap. Their support needs were not significant enough that they were in a certificate program, an individualized program, or in a life skills program, but at the same time, they were having a very hard time staying on diploma track, [01:08:00] even with co-taught classes, or some self-contained classes, or some pull-out.
Everybody’s working really hard to try and get them through this curriculum, but if your IQ is, let’s say, it’s a 79 and your basic reading skills are really low, your basic math skills are really low, your working memory is not great, your processing speed is not great; this is suggesting a lot of support needs. I don’t have an answer for this because this is a lot of the population.
When you think about the normal distribution, we’ve got 3% of kids on the high tail. These are super bright kids. We’ve got 3% of kids down with the more significant support needs. They’re down what we would call the extremely low range but [01:09:00] what about those kids who are more than a standard deviation below the average?
In that chunk where they’re under 85, but they’re not quite below 70, we have the hardest time figuring out how to make a good educational experience and a good quality of life for those kids. I think this is one of those things where it’s going to take a lot of parents demanding that we do better.
Look at like case of vendor F went all the way through the Supreme court saying that kids had to make more than just minimal progress in one area. This is going to have to come up with a groundswell of parents and clinicians working together to say we need something else. We cannot just have the one size fits all education program and expect good outcomes for everybody.
Dr. Sharp: Sure. I wonder if that might be a nice segue to maybe our last [01:10:00] topic here before our time runs out, always goes by very fast, but you have brought advocacy in house in your practice. Is that right?
Dr. Rebecca: We did.
Dr. Sharp: Yes. Tell me about that. How does that work in a mental health practice? Tell me all about this. I’m very curious about this service within a private practice because we only see it out in the community. It’s maybe an attorney. It’s an advocacy group. It’s the Arc, which you mentioned. It’s that kind of thing. And so I’m curious how this works in a private practice.
Dr. Rebecca: It wasn’t my idea, but during the pandemic, we had a lot of advocates that we really loved retire. A lot of folks during the pandemic were like, I think I’m done. This is my time or they were scaling back or else the wait lists are huge.
For me that my practice has always [01:11:00] had a lot of focus on special education, I come from these two traditions and it’s really important to me that any reports that we do are useful to school teams, that we’re trying to collaborate, inform and work together as opposed to throw a Molotov cocktail into the middle of the meeting.
The other piece that we found was for families to get psychological testing is insurance companies, you know this, it’s very hard to get them to pay for it, particularly when they’re saying, oh, that’s educational. We don’t cover that.
We found a burden for the families if they had done testing and then maybe their insurance company had said, too bad, we’re not paying for that. We’re not going to reimburse you for it to then say, oh, now you have to go and pay a whole bunch of thousands of dollars for an advocate to do a lot of the work that we’ve already done.
We’ve [01:12:00] reviewed the file. We’ve reviewed all the psychological evaluations. We’ve reviewed the speech and the occupational therapy. We’ve looked at work samples. We’ve looked at the IEP goals. We were already doing so much of it that it seemed like we could do it cheaper for them and also not have a handoff because as you know as a business owner, the handoff is everything. If I hand off to somebody who does a bad job, I am going to get blamed, and rightfully so.
Two of the therapists in my practice were really interested in this. They had experiences being part of multidisciplinary teams and they got some extra training. I help out with the advocacy program as well. It seemed like a service line that we needed to start providing because there was such a need.
Dr. Sharp: That’s fantastic. I assume, I was about to ask a really dumb question, I’ll just say it because that happens [01:13:00] sometimes. I was about to say, I assume you charge for it. You’re not doing this for free. What is the pricing model for something like this? Is it per hour kind of deal or is it a flat rate for some kind of package? How does this work?
Dr. Rebecca: I would love to be able to charge like attorneys and be like, give me $5,000 and I’ll do whatever I want with it. We’re not doing that. We’re not trying to gouge people because these are existing patients. We’re trying to provide a service that’s part of the care that they’re already getting. So it’s an hourly.
I do know some advocates who do a retainer system. If they’re doing a lot of heavy duty advocacy where this is potentially a case where you’re talking about a lot of meetings, central office is involved, mediation is involved. Generally, if a case is going [01:14:00] to be that involved, then we have a whole bunch of advocates in the community that we like and trust and so we’ll put them in their very capable hands.
Dr. Sharp: I got you. That’s cool. This is one of those things, we think about alternative service lines in our practice a lot. This is a great example of something that integrates well with our services assuming you’re working with adolescents’ developmental concerns. I appreciate it.
Dr. Rebecca: It’s the brand of having an educationally focused is to bring neuropsychology and the special education focus all together with emphasizing the quality of experience for the patients and their families. That’s the zone we’re trying to live in.
Dr. Sharp: Yeah, I like that. I know we’ve talked about a lot of things. You have given me so many resources. I think the show notes [01:15:00] for this episode are going to be very rich.
If folks are listening and they want to dive in a little bit more and wrap their minds around transition-related resources, support for young adults, do you have a top one or two resources that folks might check out just to start to head down that path a little bit?
Dr. Rebecca: Yeah, I would start with, I got it right here in case I need to reference it, the Intellectual Disability Definition, Diagnosis, Classification and System Supports. That’s the standard for diagnosing intellectual disability at this point. There’s a lot of great information in there about thinking about support needs.
I think that organizations like the Arc, TASH, ASAN; the Autism Self Advocacy Network, these [01:16:00] places have a lot of really rich information about advocacy. There is rights law, for example. I have many things in the resources.
I know I’m a drink-from-the-fire-hose type of person. I tend to suck down a lot of information. I did this basically what we’ve been talking about today, I have as a presentation that I’ve given two times, if people want me to speak for their hospital or their clinic or whatever. I love this topic. As you can see, it means a lot to me. So they’re welcome to reach out there as well.
Dr. Sharp: Fantastic. What’s the best way to contact you for those who are interested?
Dr. Rebecca: Through the website. It’s resnikpsychology. Again, not because I’m a huge narcissist, but because it was branding advice and things. Resnik is one of those [01:17:00] Eastern European Jewish names that has five different ways to spell it. So mine is without C in the end.
Dr. Sharp: Got you. That sounds good. We’ll put that in the show notes along with all of the other resources that you shared. So super grateful. This is a great conversation and it flew by. I know there’s a lot more that we could say about this, but I really enjoyed it. Thanks for being here.
Dr. Rebecca: It’s good to talk with you again. Thanks a lot.
Dr. Sharp: All right, y’all. Thank you so much for tuning into this episode. Always grateful to have you here. I hope that you take away some information that you can implement in your practice and in your life. Any resources that we mentioned during the episode will be listed in the show notes so make sure to check those out.
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