In this webinar, CHOP experts discuss neuropsychological evaluation, the legal rights of students, and how to support your child as he returns to learning after treatment for cancer or another disease.
Thriving in School After Treatment
Iris Paltin: Hi and thanks for joining us. Today, we're going to be talking about "Thriving in School after Treatment." My name is Iris Paltin, I'm a pediatric neuropsychologist and I'm here today with Jamie Johnson, who's our Hospital School Teacher, and Eileen Kenna Satullo, who is our social worker. So, we'll get started and thanks so much for making time out of your busy week to be here today.
So, you know, you'll see at the bottom of your screen, there's a moderated chat. So below the video feed, you can use a window to connect with one another, and also, please submit your questions using the chat window. Questions will be posted as they are answered during the scheduled Q&A breaks after each of our sections and also at the end of our talk today.
So, first, we're going to speaking about neuropsychological assessment. And I just want to share a little bit about what a neuropsychological assessment is.
So, this assessment is usually an all-day experience that really looks to inform the family about a child's functioning in a lot of different areas.
So, intellectual functioning is what you think — typically think of as IQ, which is made up of verbal and nonverbal reasoning, working and memory, and processing speed, which is how quickly you're able to access information you have.
Also, Language Functioning — everything from basic one word identification and retrieval to higher order pragmatic language — so, the nuances and prosody of how we communicate with one another.
A large part of the day is spent at looking at learning in memory. So whether we're at school or at home, we take in information in a lot of different ways, and the goal is to identify where is this child most successful. How is this child best able to integrate new knowledge and benefit from instruction.
Visual-motor and visual-spatial functioning is simply how lines make sense in space, and how you make your hands do what you see in your mind's eye. We also are very focused on the whole being of the child, not just their core cognitive abilities, but their social and emotional functioning, adaptive abilities, which is how well they take care of themselves in their daily environment, and then attention and executive functioning skills, which I'll spend a lot of time speaking about in a few moments.
So, executive functions are thought of as the conductor of the orchestra. This is an incredibly important domain that impacts academic functioning in variable ways as the child ages. So, in the younger years, elementary school, you're really looking at the child's ability to attend to what's important, not be distracted by things that are unimportant, be able to put the brakes on and do what they need to do because the teacher or class is moving in a new direction. And then when you get into later grades, middle school and beyond, it's really about organizing and planning and executing the tasks that are competing in this child's world. And so, a lot of academic success depends on how effective these skills are.
But to have a conductor, you need to know who's in the orchestra. So these same skills that we just talked about at the beginning, just to give you a little idea as to how they relate to actual school functioning, visual and motor abilities would be any time handwriting is needed, a child who's taking notes, keeping up with the class.
Visual-spatial functioning is heavily implicated in math abilities, especially as you get into looking at charts and graphs and Algebra, and be able to see visual information in a meaningful way. And language processing is, again, how we communicate both verbally and with the written word, and the rest, we had talked a little bit about already.
But to really draw your attention to what I think is most interesting is this conductor as the executive functions. When we're thinking about starting a task, a lot of times children or anyone can be overwhelmed with: Where do I start? What are the things I need? How am I going to get it done? How much time is it going to take? What am I going to do first? What am I going to do if things don't go as I expected? And, how am I actually going to react and problem-solve as things are occurring?
And those are all the 10 items you see on the screen in front of you, things that are contributing to executive functions, and they are measured in a direct way in an assessment. But also incredibly importantly, we ask for parents to complete forms telling us what they see their child is either succeeding at or struggling with at home. Because we know that our environment is a very contained one-on-one distraction-free room, which is different than having six classes coming home after dinner, before sports practice, with three other kids in the house, and how are goals being actually met or were they being derailed.
So, it is a collaborative process between the direct assessment and parent-informed measures, as well as asking the child themselves to rate and discuss how they see they're doing in their everyday life.
So, within oncology specifically, there are no “signature” profiles due to the wide range of presenting characteristics present in each child. So, diagnosis could be anything from if the child had a brain tumor or leukemia or a tumor in another location; treatments, we know that cranial radiation and intrathecal chemotherapies are most impacting. That's not to say that — and surgery of course — that's not to say that other treatments are not, but that's what has been most heavily studied, and also patient characteristics really vary.
So, how old is the child at treatment and diagnosis? We know gender plays a role, and premorbidly, did someone already have problems with attention or organization or a learning difference? Were these things present before diagnosis and treatment?
And then, one of the biggest factors is how much support and intervention can this child have in their recovery, of course. And we know that really changes how well someone does in their everyday life.
So, as I said, the largest focus is really on radiation therapy and intrathecal chemotherapies, and what comes out of that research is primarily struggles in the areas of processing speed, fine and graphomotor speed, attention and executive functions, memory, and that's both visual and verbal learning, and just general IQ.
Now, the complicated thing about IQ is that when you're putting together four different scores, which is what an IQ is, a verbal score, a nonverbal score, a working memory score, and a processing speed score, IQ numbers can be misleading. It's like asking a track star to do a 500-meter swim and saying, but they're an average athlete. You can have some areas of strength and some areas of weakness, and one number by itself really kind of obliterates those differences. So, that's something really important to think about when you're looking at just an overall intellectual functioning number.
Also contributing to performance is how academically available is the child. So, are they missing school for treatment or for feeling ill, or even when they are in school, are they less available for learning because they're not feeling well, they're distracted by other things that are going on, they're trying to catch up from things that they have missed, or for another whole host of reasons. Even though they're physically present, it doesn't mean that they're best available for learning.
So, just to keep in mind, time periods which might prompt a family to explore neuropsych assessment are really those windows where the demands in the environment are about to increase. So you see on your screen that completion of treatment, start of elementary school, third grade, middle school, seventh grade, high school, and then post secondary education are really times where all of a sudden, the demands for independence increase, and for those children who have gone through treatment, that's often where if we have not yet seen struggles, that's where they can develop because there hasn't been the practice of dealing with these new situations.
So, that's just something to keep in the back of our mind if your child is in one of these windows [siren] and new difficulties have emerged, that would not be unexpected.
I hope you can hear me over this.
So, other observations, in addition to those static time points, are things that you might see at school or at home would be difficulties maintaining attention. You could see difficulties with the academic subjects that your child was previously successful in or enjoying. And under that could be contributing reading or writing speed, reading comprehension, ability to learn new math facts or to recall conceptual information, and also just integrating new knowledge into an existing database.
So, if you're hearing any of these challenges at school, it could be due to the late effects of treatment.
Also, and this is I think a big one, when homework becomes a battleground, there's often a cue that things are not going well, and it's not a motivation issue, it's not a lack of trying issue. It might be that the child is really struggling to keep up, especially with completing assignments, keeping track of things or becoming overwhelmed.
And again, this is right for those executive functions that if they're not developing at the expected rate compared to typical peers, homework, which is less structured and becoming more and more a part of everyday life, becomes a very challenging time if someone who doesn't know how to start, how to get themselves together, and how to finish, even if they know the material that they should be doing.
In social situations, you can see differences if the child's having a hard time maintaining their previous friendships or making new friends. That might be a sign that there is a difference between the child and their peers that is becoming more of a struggle.
And similarly, if your child seems to be more anxious or withdrawn, that could be their way of communicating that life is getting a little bit too hard and they don't know how to deal with it. So, maybe a neuropsych evaluation can inform where interventions will support them so they can more fully engage in things that they enjoyed.
So, the whole point of a neuropsychological evaluation is to inform recommendations and treatments. It's — if you just took your child into a room for eight hours and they did a bunch of testing and you left with the report, you haven't gained much. But if you leave a feedback session knowing what your next steps are to support your child, then that's the whole name of the game.
So, one example would be if a memory problem is identified, then maybe the way testing is administered needs to be modified, and you can see some examples on the screen in front of you.
Similarly, slowed processing speed could mean that someone needs additional time to complete their work. So it's not a content problem, it's a time to get things done. And if your child knows that a spelling test they only have 10 minutes for and they physically cannot get the words on the page in that time, that's a very demoralizing circle to be in, whereas just saying you have 15 minutes, instead of 10 minutes, both allows the child to demonstrate their knowledge and reduces anxiety associated with testing.
So, reduced graphomotor speed can be associated with needs for writing and note-taking accommodations. The simplest one is having a word processor or a laptop available. In this day and age, we really handwrite our grocery notes to ourselves. There's not a whole lot that our handwriting's important for once you know how to write, so just having access to something that takes away those graphomotor demands can make a huge difference in a child's ability to communicate what they know, and also to be successful in taking notes.
So, if a child can't keep up with the rate of a lecture, when they're going home to study, they don't have meaningful notes to look at. So, we're trying to intervene on that cycle.
If during different phases of treatment or as consequent of treatment that there's significant fatigue or attentional difficulties, again, when a child is not available for learning, a modified school day is really appropriate so that the time spent in school is most effective.
And it's very possible that referrals for outside services are recommended, whether that be mental health and supportive counseling, whether it be a speech-language evaluation to understand some of the higher order language issues that could be at play and OT for the graphomotor needs. It's really creating a team that will be able to individualize services for your child.
And also, there's a lot of room to learn things that children can do for themselves or that the family can organize to support them. So, looking on your screen in front of you, you'll see a self-talk paradigm that really gets at the executive functions of, "I have a goal and I don't know how to get there. Maybe this is a rubric that I can follow. So, I have the things I need in the place where I need them. I know what my goal is. I know how much time it's going to take me, and most importantly, it's giving feedback to oneself. So did my plan work or not? How can I modify it next time?" Because all of us, especially children and teenagers, are generally very bad time estimators.
We think something's going to take 10 minutes and it really takes an hour, and if you've done that with four assignments in a row, you're incredibly frustrated. So, developing that internal clock and what works and what doesn't are really just effective life skills to take anywhere.
So, in summary, the goals of a neuropsych assessment are really to help best understand your child's cognitive development after diagnosis and treatment, to help develop an IEP or 504 Accommodation Plan within the school, which you'll be hearing a lot more about from the following speakers, and also to identify services or interventions that can really support your child's success.
And then finally, planning for the future. So, neuropsych assessments can be repeated every few years because as the child develops, their needs may change and the goals for that child and family also differ. So, we really just want to facilitate those outcomes.
So, I was just handed — I'm going to take a look at a few questions and see if I can answer any right now before the next speaker.
So, two great questions. The first question is: "How does someone go about getting a neuropsych evaluation? What is the timeframe post-treatment? The ideal time to have it performed?"
So, I'll be very honest, scheduling a neuropsych often takes a lot longer than we would like due to waitlist that are just generated at hospitals, at private practices across the country. I would assume that it takes several months to get in. Unfortunately, it's not something that you'd likely do overnight.
So, I would definitely plan for that, especially if you're coming up towards the end of a school year and you're thinking about accommodation needs, start well in advance. And then the ideal timeframe — I would say if not for identifying — if actual problems haven't been identified and you're just wanting to be preventative, I think once treatment has been completed is a great time because testing on treatment … if there was already identified needs, then definitely test — on treatment, off treatment, it doesn't matter. You're seeing that there's a problem; that is the time to get your child in. If you're not seeing problems, I would say once a child is feeling stronger and is back to themselves in terms of energy and resources, then that's a really good time for an assessment.
The one caveat is, if you know that your child is going to be going through extensive treatment and you have the luxury of time before treatment starts, it can be helpful to have a baseline prior to treatment, but that is not essential, and is often actually really quite difficult just because of the speed that things need to move once diagnosis is made.
So, there's another question here saying, "A child is one year off treatment, also diagnosed with autism. What kind of tutoring or specialist intervention do you recommend, and how do we find a good fit? He's finishing second grade."
So, that is an excellent question, and I'm going to start by saying that I'm going to have a hard time answering it because just like every child with a cancer diagnosis is different, every child with an autism diagnosis is different, and I'm not … I don't know if this child is non-verbal, is very verbally gifted. So, across that spectrum, it's really — it's hard to say. In broad strokes, generally, intervention that is one on one with a behavioral specialist will be most effective for tutoring because so much of the tutoring is being able to engage with the material.
So, meeting that child where they are, and being able to design a reinforcing program that helps motivate the child to participate, is going to be very important. And at the end of this talk, you'll actually have an email address or if you want to send in more specific questions either about this child or anyone, we're happy to weigh in, though of course, this is not actual advice from a clinician to a client since we don't know these children, but we will weigh in with what the research has shown and what we know best from our practice.
So, thanks so much and I'll turn it over.
Eileen Kenna Satullo: I'm Eileen Kenna Satullo as Iris said before. I'm an oncology social worker at CHOP and I'm also the educational liaison, which means the social workers and others in the division if they have cases where there's a lot of snafus going on with school reentry or education plans, they give me a call and I try to help.
So, I'm going to look at student rights. The first thing I'm going to look at the laws, because the laws are really what guide everything that happens to the school child. And after the neuropsych is completed, the question is: "What are the next practical steps? What should you do as a parent?"
So, it usually involves deciding whether to amend an existing 504 Plan or IEP, or just starting from the beginning and getting one in the first place. So, let's look at the law.
The law is called the Individuals With Disabilities Education Act or IDEA. And it is a federal law, so it applies to all the states, although every state has a little bit of different tweaking. So, you have to keep that in mind. But it guarantees a free and appropriate public education to every child, also falls FAPE. Schools love acronyms, alphabet soup.
Anyway, so they came up with IEP as the Individualized Education Plan, and that is something a child can get if he or she has a disability that requires any kind of special education services, and we'll go into that a little more in a bit. So, disabilities might include something called "other health impairment," and cancer can come under that, and survivors, and it can also include obviously other diseases that children may have.
So, oftentimes I will find, because I work a lot with kids with acute leukemia, they will qualify possibly for an IEP. The brain tumor patients often qualify because of their cranial radiation to the head, so that puts them in a higher risk, and the kids with ALL, they get methotrexate into their spinal fluid which crosses the blood brain barrier, and that makes them at a higher risk. Also, a lower age at diagnosis makes for a higher risk.
So, that's what an IEP is. But everybody doesn't qualify for an IEP. So, there's something else called the 504 Plan, and that is actually a civil rights law based on the 1973, I believe, Handicap Rehabilitation Law. And the point of that law is that — think physical accommodations, think things like, all right, you're a cancer patient child going back to school.
Well, schools today have all kinds of rules. You're not allowed to wear a hat. You're not allowed to carry water bottles. Some kids in school, you can't carry backpacks or anything because of safety concerns. So, we need to intervene there. So, this is where I'll say to parents, you absolutely need this in writing. Get a 504 Plan when you're going back to school, this is sort of the early days, and we're going to put in writing that she or he has permission to wear a hat, carry snacks and water bottle. Maybe you need an elevator key. Maybe you need to leave class early to avoid crowds. So, these are the kinds of things we put into the 504 Plans.
The other really important thing to have in there, because I've had cases — well, let me back up — it is to have excused absences, OK, because schools have rules on how many days you're really allowed to miss or be in danger of being retained, held back. So, you want to have in writing in your plan that excused absences for hospitalizations, doctors’ appointments. And this circumvents their regular policies then, so you have it in writing. And don't accept the school saying, "Oh, we don't need it in writing. We're going to do everything you need." Get it in writing.
I've had cases where a high school student who missed a lot of school because of treatment, was diagnosed maybe junior year or whatever, comes to senior year and finds out, he's told, "Oh, you don't have enough credits to graduate," because they did not have it in writing all of his excused absences.
So, thankfully, in the case I'm thinking about, we did intervene — a lot of phone calls — and he was allowed to graduate and given the credit. But get it in writing — if I can say anything over and over is that, no matter what.
But typically, you're going to see more 504 Plans in the beginning of treatment rather than after treatment. Because after treatment, other needs may have developed, which helps ups the ante for your child.
So, how to get started if you are starting on this process. Say you have a neuropsych eval from Dr. Paltin and you're like, "OK, what do I do now?" If you don't already have that IEP, you have to write to the school principal, and I'm pretty sure this is the same in every state. I know it's definitely in Pennsylvania and New Jersey.
You write to the school principal and say that you need your child evaluated for a possible IEP, special education services. Or, it could be 504 Plan accommodations, but that's up to the school to decide, but I always tell parents put in that letter. For example, I've been told my child is at high risk because he had cranial radiation, or intrathecal methotrexate, whatever the case may be, throw that in there. I'll often write the letter for the family and help them get that together and then send it off to the school.
In Pennsylvania, we have a very rather annoying provision, I think, it's the "Permission to Evaluate" form. They don't have it in New Jersey, I'm happy to say. But basically, you write that letter, ask to sign the PTE form because the clock doesn't start on the timing until you signed the form. So, the school has to give it to you within 10 days. To me, it's a lot of fooling around, but ask for it and get it right away because if you go to the school, you can usually get it right away.
So, the good news about 504s is usually, they can be done very quickly. When I'm involved, we usually get them done within a week of the child's diagnosis, and we get that in writing and then I always feel better. I think the parents do too. But then, when you look at after treatment, they may qualify — they may have other needs.
I did one of those in New Jersey, I did check this to be sure that, the nice thing about New Jersey, and again, this is probably because of case law, when they write that letter, the request to evaluate letter, that is considered your permission, so you don't have to go through another form, and the clock starts immediately on the time that the school has to do their evaluation.
Now, how do you get it? How do you get the IEP? What are they thinking about? What kinds of hoops does the cancer patient have to jump through?
Well, the eligibility … it's an "if" and an "and". So, you need to look at things like hearing, vision, speech, orthopedic impairment. Maybe the child has a specific learning disability. Maybe they already knew that before treatment. They might be other health impaired with a different disease or illness, and because of one of those things or all of those things, because of that disability, needs specialized instructions.
If they don't need specialized instruction, you fall into the 504 Plan, but if you need specialized instruction, and you can make that argument and make it stick, that's where you get the IEP. So, there can be disagreement on that obviously, because it's open to interpretation.
We're always also looking for related services, which things that would help your child take advantage of the specialized instruction such as, as you noted, the laptop or the iPad or the things they may need that would be helpful for them to learn.
Timeline — there's very strict timelines in every state regarding IEPs. It behooves everyone to find out what it is in their state. In Pennsylvania, the school district is supposed to complete the evaluation and give you the written report within 60 calendar days minus the summer, the dates the parents sign that form. So, mark it on your calendar, make sure you know when you submitted things. If you take your letter to the school, get a receipt. I always recommend that.
And then once the eval is done, the IEP must be created within 30 calendar days of the completed evaluation. And again, this varies a little bit from state to state, so you're going to want to check that and we'll give you some resources later to do that.
So, all right, you went this far, you got that IEP and you're like, "Yay, this is great." But maybe you're not agreeing with the content, and this happens. So, I always say start simply. There's lots of ways to appeal that and things to do to rectify that.
But first thing talk to the teacher. Because sometimes I've had parents call me with issues that were really … could be straightened out with a conversation. So, you start there, maybe you don't get anywhere. At that point, I say OK, let's ask for an IEP team meeting. OK, in New Jersey it would be the Child Study Team meeting. So, you're asking, OK, we're going to have an official meeting, sit down and look at this, and explain why I think this isn't being followed, or I don't agree with the content of what you're trying to do here.
Another avenue of appeal, and this is in Pennsylvania specifically, it's called "IEP," it's fairly new, "IEP Facilitation." This is a person that is appointed by the Department of Education, but they're not part of the Department of Education. They're trained, they're supposed to be neutral, and they're assigned at no cost to the parents. Their goal is to sit down with the team and the parents and try to facilitate an agreement.
If that fails, and this is true in New Jersey and most other states, mediation. Again, a trained mutual mediator gets involved. You don't need an attorney for that, and it's supposed to — in both cases — work with both sides to try to come to an agreement. The highest level of appeals is called a "due process hearing," and it is what it sounds like. It's pretty formal. There's an administrative law judge, both sides have attorneys. I've never seen a case where they didn't. So, that can get pretty pricey, and it’s obviously not something you want to happen, but it does. And I think a lot of the tweaks in the law have all been because of due process hearing outcomes and little changes that came about because of that.
So, if you're thoroughly confused or not, I wanted to just give you a little checklist for if you're saying, "Oh, what should my kid get," or "What do I think he or she qualifies for?" A couple of things you can ask: "Does my child need special education services?" Or, "Do I think he or she does? Do I suspect it?"
OK, if yes, you're going to ask for an IEP evaluation, and he or she probably is going to qualify. Then you can — another question to ask is, "Does my child need an accommodation like a wheelchair access?" Is that all? OK, fine. Then a 504 Plan, that would be considered a physical accommodation.
But what if I have a child that needs both things, maybe they need wheelchair access and they also need some special ed for, you know, learning problems that he or she has. Well, in that case, you're going to want the IEP. And a rule of thumb is also to think — sometimes people say to me, "Oh, isn't it better to get a 504 than an IEP?" And I'll say, no.
An IEP, the rights that you have there trump a 504 Plan. So they're really … if your child in any way qualifies for that IEP, go for it, get it and keep it, which I know Jamie's going to talk about that, because it's worth its weight in gold in terms of the services for your child. And accommodations, physical accommodations, can always be incorporated into the IEP.
I think I know answer to this one. "Is intrathecal methotrexate," which is a drug given as we noted, in the spinal fluid to children with leukemia in particular, "is it the same as IV methotrexate in terms of association with cognitive issues?"
Yeah, because isn't it that the spinal fluid crosses the blood brain barrier but IV methotrexate does not?
Iris Paltin: Correct, you got it.
Eileen Kenna Satullo: So, it's not the same. That would be the answer.
Iris Paltin: That’s not to say that someone who's had other treatment would needs services, but in terms of the research, it is a different outcome.
Eileen Kenna Satullo: Oh, here's one. Again, we can probably both answer this one. "My son is 12, in treatment for a brain tumor. How do I determine whether a 504 or IEP is better for him? He currently has an IEP but the school wants to switch to a 504. He's very smart and with an IEP, he's in learning support. They don't really know what to do with him."
Well, isn't that typical? That's kind of a typical situation.
Iris Paltin: I think you've hit something that resonates probably with a lot of viewers right now. I will stick with exactly what you said. When you can hold onto that IEP, always hold onto the IEP. The IEP gives you accountability that a 504 does not. I don't — do you want to talk about…
Eileen Kenna Satullo: No, go ahead.
Iris Paltin: So, with an IEP, not only do you have to have yearly meetings, they're also goals that are tracked on a quarterly basis. With a 504, that doesn't exist. You just have a list of recommendations for the teachers. So, let's say we did something even as basic as additional time for testing. On a 504, that's a recommendation. On an IEP, that's a legal mandate.
So, that's at the most basic. So anytime you can keep an IEP, do so. And I would make the argument that your child is doing well because the IEP is there to support the areas of weakness, so that the areas of strength can shine, and they shouldn’t be penalized because they have areas of strength.
Eileen Kenna Satullo: And the other thing, I mean, think about gifted children who have IEPs. They're all over the school district. So, even if he is very smart, which he is.
Just — it makes no sense to get rid of that. I would fight to hold onto it.
And like you said, not penalize him for doing well.
Jamie Johnson: And also just speaking to this issue as well, keep the IEP, that really trumps the 504 and as Iris was saying, it is legally mandated. As far as with … if he's in learning support, I would be very curious to know if he was taken out of the classroom, if you could advocate for him to be included, inclusion within the classroom. That could really rectify a lot of learning needs. And also, you can, as a parent, you are a partner.
So you really want to advocate that … for those meetings. And if you're not getting the reasonable accommodations that you feel that your son is receiving, I would continue going with that avenue. Reach out to a local advocate. Reach out to your local state services. I know in Pennsylvania we have PaTTAN.
So, they have a lot of information for parents and trainings, and they can set up you as well as your son with an advocate that can attend meetings, and really try to advocate for that. Because if you feel that his learning needs are being held back because of the learning support, there are other avenues and ways to support that.
Eileen Kenna Satullo: I'm also wondering if this child — has he had a neuropsych testing yet.
Iris Paltin: You know, that's a good question. I mean it could be really helpful to shed some light.
Eileen Kenna Satullo: Right, I agree.
Iris Paltin: Jaime?
Jamie Johnson: My name is Jamie Johnson, and I'm a special education teacher at The Children's Hospital of Philadelphia. And I just wanted to start out by saying school was always a huge part of any child's life. It creates the normalcy. They have friends, there's learning, they're preparing for their future.
It's a journey. And a lot of school districts, all throughout our country, varying policies and guidelines and procedures, and it can get pretty sticky if you don't have the right wording or if somebody's telling you one thing, but really, the state and all the guidelines are saying another.
So, I'm just going to … throughout my presentation, we know that there's a lot of situational demands and they exceed the personal resources, and I hope that you could take a lot of the resources within the presentation.
What I'm going to do is start by talking about the barriers and the solutions to educate a chronically ill child. There's a lot of violations, and it kind of falls under the umbrella of the FAPE, the Free and Appropriate Education, Section 504 and IDEA. And this all ties again into the "No Child Left Behind Act" as well, the NCLB.
So some barriers, and from my experience in working with parents with a chronically ill child, are attendants, retention, greater tension, holding them back, homebound, providing reasonable accommodations for the homebound, either at the home or in the hospital when they are hospitalized. And then lastly, extended school year has always been identified, trying to fight and get that extended time for them throughout the summer.
So, attendance, like it says, “you're missing school, you're missing out.” That is not OK for a school to assume. The reason why is because one of the indicators is measured through an adequate yearly process or the AYP. So, basically, they are measured and they're funded through their attendance. So, children with chronic illnesses, I heard a parent before say they're reviewed as attendance anchors. Either they stabilize the program or they can pull down the program.
The fear of not achieving required 92% really drives the schools to disenrollment, withdrawal of the student, and this has always been not OK. In my experience, we really fight for even the disenrollment. Sometimes, it's within 10 days in some states, and within that time, the school needs to provide adequate services for your child during that time.
Our next barrier is retention, and there's always a huge threat, "They're not going to pass my child, they're not at school. They're saying they're not succeeding and they're not adequately fulfilling all that needs to happen." And this is definitely a huge issue. A lot of times, schools are providing an hour a day, five days a week, which is a homebound policy. Within that hour, it's very impossible to get through a whole curriculum.
I really always advocate to designate the poor subjects. What are they really responsible, and how can we as a team get together and just scale back and really focus on the poorer subjects? Retaining a child with chronic illness from advancing to the next grade level, they usually present this either early on, or definitely later on.
And like going back to what Eileen said, get everything in writing. If they're promising just, "Oh no, they don't have to do this," or, "They have to do this," I would suggest this, get everything in writing, and especially with the 504 and the IEP.
Our next thing is extended school year. And within the state of Pennsylvania, our extended school year or ESY, is usually provided in the summers. In Pennsylvania, it is – it usually starts at the end of our school year, depending on when that is with snow days now. But usually, the end of June and it goes all the way through probably the end of July, sometimes even early August.
So, just some of the key points here is: It provides opportunities for lost instructional time, and qualifications vary from state to state. An ESY is reserved — and this is like the key wording — for students who exhibit regression over multiple time points. And I always advocate for parents to argue that point when you have a chronically ill child because they do exhibit regression over the multiple time points. We can also … I've also had parents advocate for extended homebound during the ESY time just to support their child, and if they need to accumulate a certain number of hours, it would be accumulated within that time period.
So, just some data and some factors that they throw at you with the regression and recoupment. Sometimes, this can get a little hazy. So regression is how much knowledge or how many skills a student loses during a break in educational program. This is where I always say documentation is best. If you are seeing that your child is showing regression, math is the easy, most relatable that you could refer.
So, say you have a second grade child, and they are continuing their educational program, and they're having a lot of memory issues. You're noticing it with computation facts and just to keep documentation within that. That could be an argument for the ESY or extended services that you may need.
Recoupment is how long it takes for the student to get the knowledge or skills back to the level where they were before the break. And within the ESY program, they should have very clear, distinct goals that they could be able to produce, graphs — something to show the beginning of baseline to where it is now.
And mastery, of course, is when they master the skill. And after a number of repetitions sometimes, like they'll count … if the student has not completed the number of repetitions, that's needs and that can be documented as well.
This brings my next point to supplementary aids. This has always been an area where parents really want to know what can be provided. Schools don't always tell you everything that they can provide. Like I said, advocates are wonderful to have in that room with you. So, the supplementary aids are four categories: collaborative, instructional, physical, and there’s social-behavioral.
So, I'm going to start with the collaborative. So, this is more like I think of, the adults that are working together to program for your child. There can be instructional arrangements. So, like some schools have like co-teaching or paraprofessional support, or even too, like a need in the classroom that could service either as a behavior aid or an instructional aid.
Coaching and guided support for team members in the use of assistive technology. A lot of times, a student will be designated an assistive technology device, and there are specific trainings that the school staff needs to go to, to fully support that child. And I really always … that could definitely fall into this supplemental.
The scheduled opportunities, like for parental collaborations. I always say to put that in there. If you want to sit there and schedule a meeting every 30 days or maybe every 60 days, that's where you can put that in there — in writing.
Our next one is instructional. So I like to see Inspector Gadget, he's got all the things coming all out. And so this, I always think of the delivery of instruction. How is your child going to learn? There's a multi-modal way of learning. They could be a visual learner. They could be an auditory learner. They could be a kinesthetic learner, wanting to move and do things. And there's all different ways of learning. So you really want to advocate for the modified curricular goals, the alternate ways of learning. The test modifications, you know, however long, if they need extra time, do they need a separate room? Thinking, what is the way that your child is most likely to learn and progress?
And then alternate materials or assistive technology. It's like books on tape, large print, computer access. Another piece is the physical. So, whenever you think of physical, think of the physical environment. What does your child need to access the physical environment to best meet his or her educational needs? So, I always think of furniture arrangements in environments.
How are the desks set up? Do they have light sensitivity? Do they have sound sensitivity? That's something that is really prevalent in classrooms, and even before or after treatment or especially during treatment, they may have these things. So, environmental aids — so again, like the heating of the classroom, maybe the cooling of the classroom.
The structural aids, so like if your child has a wheelchair or any assistive device that may need, even if their legs are tired, and I've heard a parent had to put in the IEP a block to put underneath the desk for support for the child's foot because it was not a requirement in the classroom.
So social-behavioral — these are supports and services to increase social behavior, reduce disruptive behavior. So, say your child's having some behavior issues and exhibiting really either regression or just sensitivity all around within. The school is provided social skills instruction. Maybe there's a behavior plan, maybe there's a plan that can get your child back on track towards where they need to be. So even peer supports and behavior plans, modifications of rules and expectations. As Eileen said, schools have their specific rules but there's always a way to try to bend.
So, just some tips — I've learned a lot from my parents and dealing with a lot of schools. This seems to be the most helpful is a healthcare plan. If the healthcare plan can be included in the IEP, sometimes it's a stand-alone document, definitely in the 504, but to really include the diagnosis, emergency plan, physician orders, nursing goals and intervention for the student. That's a big one.
Nursing procedures and training of school personnel, specific healthcare needs and the student's role in his self-care. What do they know about their injury or their illness? What can they provide? This has always been a really good, helpful plan for them.
Hospital and homebound instruction — so, the student that has needs and they can't be met by public schools, and the child can't go into the classroom. They have to receive specially designed instruction at home or in the hospital. We have a hospital school program at CHOP that works as homebound service while the children are inpatient.
And the school will provide service and provide also any extenuating services such as PT, OT, speech. They can provide schoolwork and everything for that. Homebound has been a tricky issue. I know along with the funding and everything with schools, but please, just keep advocating for your child to receive the services that they need.
Schools cannot base placement decisions on category of disability, severity, the configuration of the delivery system, availability, and availability of space is huge, and administrative convenience. The place for a child is in school and we always advocate to get that child back into that school, whatever it takes.
I know some services have been provided such as Skyping, and just to have that "in touch" feeling with that school and the child. We just came up as a group with a bunch of resources.
Eileen Kenna Satullo: The Education Law Centers, I can't say enough about them. I think they're in many states. I know for sure they're in Pennsylvania and New Jersey and the websites. If you go to the website, click on their "Publications" and they have a guide to how to get IEPs, 504s.
There are templates for letters, how to send your letters using the right wording. And it's really remarkable if you use the right buzz words, how you get results as opposed to calling up the school, or just writing your own handwriting, oh I want an evaluation. It doesn't get the same result as these letter templates do.
So, I highly recommend the Education Law Center sites as well as Wrights Law, which is fantastic. We've all used it. They answer specific questions from parents. You can post them online and then they have an archive, because if you had the question, someone else had it in the past, and a lot of them are there, they're on there. I'll type in a topic and all the questions will come up for that topic and then the answers, so it's wonderful.
At CHOP, we do have "A Teacher's Guide to School Reentry," which I think is excellent. It's really — I would say mostly for the more early entry back into school, but it's got great advice in there for teachers, guidance counselors, nurses, and anybody can access that online.
The PEAL Center is an excellent parent organization. I've used them many times. Check out their website. And then the Office of Dispute Resolution, you can call that number just with your general questions about special Ed in Pennsylvania. There's a similar organization in New Jersey.
So, it's not that there's … the information isn't out there, in fact, there's so much information sometimes, it feels overwhelming, I think. But hopefully these sources are going to be able to zero in on maybe some of your questions and answers.
CureSearch, I love that one too. That is just a couple page summary that's really clear and easy to understand, I think. I've given it to many schools. I think it's three-pages handout, which talks about who is at risk for late effects of cancer treatment, educationally, cognitively.
It's very clear, and you can look at it and say, oh yeah, this child had this risk factor or this risk factor or not, as the case may be. That has been really helpful in a lot of meetings, because schools will say, "What? He seems fine. He seems fine now. What's going on?" That'll answer those questions.
And I'm not really familiar with the next one.
Jamie Johnson: Oh, Mission Empower, a lot of parents have used this, just more for advocacy. You can call the number. They're a great group. They provide you a lot of really good buzz words, and also, there is like through their website, there's online trainings and everything that a parent could attend.
And then the Parent Education and Advocacy Leadership Center, and that again is national as well. It's all through the state, it's all through by state listing, so you can call that number. I'm not familiar with the website of that, but I know that a lot of parents have within my experience, used this.
And time for questions.
So, “When a child has accommodations such as the number line for tests and homework on the IEP, is it legal to not allow the child to use those aids for standardized testing?”
OK, great question. So, standardized testing, there is a section within the IEP that you can request for accommodations. Every state is different within their guidelines. If they have it in their IEP for their curriculum within the school, a lot of times with the standardized testing, it's the measurable goals.
So, they can only provide like calculators, there's a certain extent to where it needs to be. I would just recommend to again, during that IEP meeting, or even just a revision meeting, or just a meeting, just to go over your state guidelines and what are the accommodations for the standardized testing either for the state testing, or even standardized testing even in an academic progress.
Iris Paltin: So, I'll just jump into the Standardized Testing. Let's say your child has extended time for in-class tests. That does not mean that they have earned extended time for their in-school standardized test. And if we fast forward to SATs and GREs, that's a completely different process, where you're applying to the college board, etc.
So, it is essential that you have demonstrated use and benefit from the accommodations in school before you pursue them at the next level. So, if a child has never used extra time and is now about to take the SATs, it's an incredible uphill battle asking for extended time at that point.
Even if you have extended time on your IEP and you have not used it, it is hard to get the accommodations. So, that's another good argument for keeping accommodations in place on the IEP versus 504 if you're looking to the future and thinking that standardized assessments later on are going to need intervention. You have to show that you continued to benefit from that service.
Jamie Johnson: This is another one we were talking about before. "Is it possible for my child's school to do a neuropsych evaluation?"
Iris Paltin: That is a great question. The shortest answer is, no. It is incredibly important for the school and the provider to be collaborative because as Eileen often points out, a school is not required to consider a neuropsych. What is the exact phrase?
Eileen Kenna Satullo: Well, they're required to consider it but not abide by it or carry out the recommendation.
Iris Paltin: So, generally in school evaluations include an IQ test, which is what we talked about those four different components being lumped into one, academic achievement measure, and then parent reports and in-class observations and other things that are useful.
What I would recommend if you want to get the ball rolling, and you have a long wait for a neuropsych, you can get that done in school and then the neuropsychologist won't have to do that part and they'll be able to do a lot more of the memory executive functions and other components.
Alternately, if you get to the neuropsych first, you can then — you're highly encouraged to use that report in the school, because while the school does not have to abide by it, if those measures have been given within a certain window, they can't be re-administered. So, now you're in a bit of a position of, I have this data. Hopefully, these recommendations will help inform what my child needs. The school needs to do an evaluation, and you've already done the measures that they would use.
So, in short, no a school cannot do a neuropsych, but you can collaborate with them in the parts of the assessment that they administer and what an outside provider can give.
Jamie Johnson: The next question is, "My daughter is 7 years old and she repeated kindergarten this year. Next year, she'll move on to first grade. She's in a mainstream class and pulled out for OT and speech. We just had her IEP meeting and they think that she will need to be pulled from class to work with a resource teacher. I feel that it would be better for her to have an aide who could keep her on track during the day. She craves being a part of the class and should I insist on her having an aide if she starts to fall behind?"
This is always a really good question. I would insist — if you feel that your child would best meet her educational needs this way. However, also, like we kept saying with the school, they can accommodate. It doesn't mean that they're going to do it, but see where they can meet you at some point in the middle of this.
Maybe there's a reason that they want to see her with a resource teacher at a certain period of time, and then maybe what you could do is split half and half. I know parents have requested half instructional time with the resource aide and then there's a time … a period where they come in with the inclusion piece of it. Like I said, just have that meeting, see where they can meet you in the middle with it.
Iris Paltin: And also to do devil's advocate, on paper, I love, love aides. I think they're great, but the reality is each person is different. What is the training level of that aide and what are they going to be providing? Because having just a human body next to your child in class is not going to be what propels them forward. You want to know who that aide I going to be, what their training is, when have they done this service in the past.
And if the school doesn't have that to offer, and they're just putting someone in the chair next to your child, I don't think that would be supportive. So, that's just the flip side of when you want to have a pull out.
Eileen Kenna Satullo: Because you don't know — we don't know — the resource teacher may be targeting specific goals, learning goals. She's a teacher. She's got that educational degree, she might have a Master's degree, who knows. The aide, we don't know the training. It could be a high school graduate. I mean it does occur.
But I'm also a little surprised there too because mostly you hear about inclusion, not pull out.
Jamie Johnson: Yes, see what they can come up and meet you in the middle with that inclusion piece of it. You know, even if it's a couple days a week, or even with everyday would be great, but if that teacher, the resource teacher, can plan with the regular ed teacher, maybe plan more of an inclusion piece to their lessons, I think that would benefit.
Eileen Kenna Satullo: That could be a goal, too.
Here's another question. "Please explain further that the school is not required to abide by the neuropsych testing recommendations."
Well, remember we talked about when you're requesting your child be evaluated for possible IEP. So, the school does its battery of tests, Iris talked about, and let's say we do — we at CHOP or wherever you have the child tested — gets the neuropsych eval. It's the way the law is. I mean the school district, their testing they follow — I think most schools when they get the recommendations from the neuropsych evals, which are amazing to read and have so much good information in and always has recommendations at the end, I think … it just makes sense to me that they are going to follow that, but they don't have to. The law doesn't say that they have to.
Iris Paltin: What it does hopefully helps do is empower both the parent and if you need an advocate, because now you have — it is evidence and you're asking for specific reasons why goals need to be included. So, sometimes just changing the direction of the conversation and saying, OK, so recommendation number four, whatever that is, you don't want to include that, that's fine. Our goal for this year is that my child achieve this. How are we going to make that happen?
So, we're not tied or wed to what the wording is in the neuropsych report. We are completely willing to work with the school in making this educational progress. We all agree this is where they need to be. How are we going to get there?
I think what the neuropsych eval will hopefully shed light on is where some of those goals need to be.
Eileen Kenna Satullo: And it really does. I mean whenever I read them, I always come away and say, oh, OK, now I get it. And explaining the processing and the thinking and how the child thinks, and I think that provides so much good information for the IEP team at the school.
Jamie Johnson: And just this is just more info about the child whose school wanted to switch from the IEP to the 504. He did have a neuropsych eval.
Eileen Kenna Satullo: "He tested 1% in some areas, 99% in others. He has impairments in working memory and inability to follow multiple part directions. He's always tested advanced in all areas of school. The learning support department doesn't know what his goals should be."
Iris Paltin: That's a great question, I mean — and with that because we know where working memory impacts learning in so many ways and then the downstream effect of that. But if … my guess is that you have ideas as to what his learning goals need to be, that you're seeing that there are places where he's struggling or doing well, or he's doing well because you're sitting with him for hours a day reviewing and revising and going over things. And it's wonderful to have involved parents, but the parents are not the teachers.
Jamie Johnson: And I also recommend too, the teaching strategies. So, talk with the teacher. There's definitely some working memory strategies that I use with my students all the time, such as sticky notes, and just jotting down, and really try to talk with the teacher and see where his or her idea of the strategies, what is working and what is not because that could be included in the IEP.
Iris Paltin: Right, how you're delivering instructions.
Jamie Johnson: Well, thank you so much for joining us and I hope that this was a really helpful resource for you to navigate that educational journey with you chronically ill child. Again, if you have any further questions, please don't hesitate to contact us. I hope all is well and good luck.