As you begin to have more brief conversation with parents about schooling related challenges, you may find it helpful to have a basic understanding about relevant educational processes and vocabulary. In this module, you will learn about the two major federal laws that. ensure access to services for eligible children. Since eligibility is the keyword, in addition to learning about the types of accommodations and services that are possible, this module also covers critical information about the processes for determining eligibility, including ways that you can help. Understanding schooling available supports. The Education Landscape. It is important for providers to have a foundational understanding of how children access school-based supports to address educationally relevant impacts of disease and treatment. You don't have to be an expert, just able to discuss some options and point parents in the right directions to get more information. What kind of supports do we need? School based supports, generally take one of two forms. Regular classroom accommodations or specialized instruction and interventions via special education. Accommodations, generally referred to the kinds of adjustments or supports that can be implemented within a regular classroom or a typical testing setting. They don't require modifying the instruction itself. For example, accommodations that might be particularly relevant to children undergoing chemotherapy, include being able to take breaks as needed, carry a water bottle, or wear a hat in the classroom. Some of these might feel like common sense, but it can still be important to specify such accommodations in writing. Other potential supports may be more critical to academic work, such as allowing additional time for the student to respond or complete work or Instead, reducing the number of items or the length of the task, so the student can complete it in the same amount of time as classmates. This can be particularly relevant for homework, as the fatigue many children feel during treatment, may make it hard to complete a full homework load after working hard to pay attention and complete tasks at school all day. Thinking carefully about the student's ability to access instruction may lead to accommodations such as assigning a seat, where the teacher can be sure that the student can hear and see well, or where the teacher can reach the student to redirect their attention when needed for distraction. Many students may need to access some form of technology, such as text to speech or speech to text, a screen-reader, enlarged font or other aids to support vision, hearing or reading ability. In some cases, these will need to extend to the testing setting, so that the student has a fair chance to show what he or she knows. Finally, regular classroom accommodations may also include various supports to reinforce appropriate classroom behaviors and interactions. All of these regular education supports for accommodations, can and should be documented on a formal support plan called an. Accommodation plan or a Section 504 plan. A separate set of specialized supports and services are accessed, through special education. By Federal Law, special education is available to students who have a disability That impacts their educational performance. Into need something different from their regular ed peers, in terms of instructional strategies. These types of supports often involve the student being pulled out of the classroom or pulled into another for smaller grid individualized instruction or being otherwise provided with instruction in a different way from their peers. They are different from the regular classroom accommodations we just. discussed. For example, a child who has a learning disability and struggles to acquire reading skills or to understand math concepts may need to be taught differently. Other Special Education Services include related service therapies, such as occupational, physical, or speech language therapy or even psychological services, or adapted physical education for students with significant vision or motor and or coordination impacts. While many of these sound like familiar rehabilitative services, the focus of Special Education Services is on the student's access to education and the educational environment, not on recovering or optimizing function. This can contribute to making the process of obtaining them challenging for parents. There are two different federal laws that govern these different types of supports and services. The Individuals with Disabilities Education Act or IDEA, governs special education, and ensures that students with disabilities that impact their education receive an Individualized Education Program or an IEP. Section 504 of the Rehabilitation Act of 1973 is the same law that ensures curb cuts, automated door openers, and other accommodations designed to ensure accessibility of the built environment. In schools, it ensures accommodations needed for students to access learning and the classroom. Most students participate in the general education setting, what we call the regular classroom, and the majority of them do not experience educational disabilities. Nationally, approximately 14 percent of all public school students have a disability and receive special education via an IEP. Of those students, the majority spend most of their time in the general education setting or the regular classroom. A very few spend the majority of the school day in a separate classroom or separate building. But even fewer students with disabilities receive regular classroom accommodations via a 504 plan. Nationally only about one to two percent of students with disabilities have these plans. What is important to take away here is that to access either special education services, or 504 accommodations, students must have a disability as defined by the federal law, and determined by the school team. In both cases, services or accommodations are free to the student and family, and the school system is responsible for paying for the service or support. Unlike therapeutic rehabilitation services through a hospital or a clinic, there is no co-pay for the family. However, in order to access either type of support, the student must be identified as having a disability that impacts education, but only an IEP, an Individualized Education Program allows the child to receive special education and related services. More about this process later. Quick quiz question. If 504 plan and an IEP both allow a child with a disability to get special education services depending on severity of the child's disability. Remember students with disabilities may be eligible to receive either 504 accommodations or special education instruction and services, but only an IEP, an Individualized Education Program allows the child to receive special education and related services. Students cannot access special ed via a 504 plan. Quick quiz question. If your patient needs additional academic support of the kinds we've been discussing, you can write a prescription for special education services as you might for rehabilitative, occupational, or physical therapy? Unfortunately, eligibility to receive these kinds of school-based supports is a school team decision. Providers cannot write a prescription for special ed, an IEP, or for a 504 plan. However, you can absolutely write a letter documenting the patient's medical condition, which can be very helpful to school teams when considering the student's eligibility for supports. It can help to identify why the child may be missing school, and what the duration of missing school might be. It can help for the provider to clarify the impact of the patient's disease or treatment on functions such as seeing or reading, or writing, and especially on learning and accessing education. You can also make referrals to need a hospital services, especially to neuropsychological evaluation services, which can help identify specific disabilities and may help clarify the role of the patient's disease or treatment in his or her presentation. Again, we saw in the national parent data that only about a third of parents reported that their child had been referred for neuropsychology, and only about 40 percent of patients here received CNS-directed therapies. Even though the Children's Oncology Group or COG recommends neuropsychology services for these patients as standard of care, it's not reliably happening or parents aren't routinely aware of these referrals. But neuropsychology evaluations can be a critical way to help provide the formal documentation of disability that schools require for determination of eligibility. I keep using the term eligible. What does that mean? The challenge to accessing these services is that the school team determines. whether the student meets educational criteria for one of the categories of disability specified by the IDEA. This is a complicated process, and there are different rules that result in a different implementation of the law between states, and even across school districts in the same state. There are a number of challenges to this process that parents have reported. Perhaps one of the biggest challenges is the requirement that the student's disability, as defined by federal law and the school team, impacts their access to education in a fairly direct way. Specifically, the requirement is that the disability adversely affects educational performance, and the meaning of this requirement has been hotly debated in various courts. For clarity, school teams often set test score criteria such that low scores demonstrate that adverse educational impact. But it is important to think about other impacts, such as failure to complete or turn in work, behavioral disruptions that result in mixed instruction or very slow work speed, any or all of which may result in academic failure for that patient. Another example might be eligibility for school-based physical therapy. To be eligible for this related service, the patient's physical disability must limit their ability to access the educational environment in some way. Maybe they're not able to ambulate independently, or climb the steps to the school bus, or safely access the building. Simply having worse motor skills than they did before starting treatment, but still being able to. generally access the educational environment will likely not result in that patient receiving school-based PT. The focus is on access, not optimizing function. This determination is not up to you, or the neuropsychologist, or even the parents, though the parent is a member of that decision-making team. The determination is up to the school team and the process, and the laws that govern it can be confusing or frustrating to families. They need your help to clarify, or at least help to guide them in the right direction to get some clarification. To be identified as eligible for special education services or supports, a patient must have one of the 14 disabilities listed in IDEA. What might be qualifying disability conditions for childhood cancer survivors? There are a number of sensory impairments that are relevant to these patients listed here in order of potential frequency. As detailed in the prior module, certain chemotherapy agents can result in hearing loss, and certain cancers an their treatment may result in vision impairments, ranging from field cuts to blindness. Patients with osteosarcoma, [inaudible] orthopedic impairments, as well as. children with brainstem tumors that limit mobility. There are a number of other conditions that may also be appropriate to consider in certain patients. We know that the base rates of certain neurodevelopmental disorders like autism, developmental delay, or even intellectual disability, is such that comorbidity with cancer is certainly the case. More specific to this conversation is the other health impairments classification. Other health impairment basically means that there is an impact of a chronic or acute health condition on a the child's strength, vitality, or alertness. This definition and the terms vitality or alertness can be confusing to parents and school teams alike. It can be helpful to clarify that not paying attention or being quite vulnerable to fatigue can reflect levels of alertness or vitality. Again, the patient must meet the educational definition to qualify for special education, and show the adverse impact on educational performance. The federal definition calls out leukemia specifically, which is good for oncology providers to know that that's written in the federal definition. However, this is not an exclusive list. Just because brain tumor, or lymphoma, or other cancers are not listed, should not be taken to mean that those patients wouldn't necessarily qualify. Quick quiz question. Patients treated for leukemia are automatically eligible for special education services under the classification of other health impairment. True or false? An important take home. Is that there is no automatic eligibility for any of the disability categories. Although leukemia is specifically identified as a health condition that may be relevant to consider and may limit the student's strength, vitality, or alertness. Eligibility for special education still requires documentation of adverse education impact, as well as school team determination about eligibility. The evaluation and eligibility process theoretically is supposed to represent a linear progression from identification of concerns and some informal problem-solving to referral and consent for school-based evaluation, and then conduct of a multi-disciplinary evaluation. Results of which are reviewed in the IEP team meeting where determination of eligibility is made. Once the student is found eligible for special education, determination of needed supports and services results in development of the IEP and implementation of those interventions. Looks linear and fairly straightforward. That's how it is supposed to work. In reality, it looks a lot more like this for families. The process can feel as if it is full of dead ends and denials or endless loops. The school teams may be confused and not understand what cancer has to do with learning. Or in the case of a student who has, "cured now," after leukemia during their preschool years, but is now struggling in middle-school, why the cancer or its treatment might still be relevant to educational success much later. There's just a lot of confusion and misunderstanding. All that means that patients and their families need your help. You may feel that this is a bit outside your comfort zone, you didn't go to medical school to learn to explain federal laws to families. But identifying what you can do and referring to needed support resources like neuropsychology, school liaison services, or other services, can make a big difference. But that doesn't solve the issue by itself. Helping families understand the long-term, educationally relevant effects of cancer treatment is critical to scaffold their ability to navigate the school support process and educate others along the way. I'd like to close this segment with another quote from a parent. The child completed cancer treatment and was referred for and obtained neuropsychological assessment. The parents said, "Even after all that, we're three years in and still fighting with the school for supports for Max. The schools don't seem to know how to handle his diagnosis and possible education repercussions of his treatment. He looks normal and healthy, so they seem to dismiss certain things". This misconception is a common challenge survivors and their families face after treatment. Because the child no longer look sick, any potential effects of disease or treatment can be dismissed. The concept of late effects and post-treatment effects on critical functions needs repeating. It's helpful for providers to help lay the groundwork, to ask questions about behavioral or cognitive symptoms, ask about schooling specifics, and explain the connections to the patient's medical history. This can help equip patients and families to better understand and prepare for schooling related challenges and advocate effectively for their needs with others. After the last two modules, you may be ready to sympathize with the parents who've told us that the schooling challenges were harder than the cancer itself. During cancer treatment, parents report feeling supported by their health care team about medical issues. But they feel uncertain about where to turn to you for help with schooling issues and more than half felt unprepared to support their child. You know from the whirlwind of information we've just provided you, that it can be hard to anticipate what supports a child might need or to know how to access them. That's where our back to school road maps come in. The road maps can help parents take action on behalf of their child. But only if you communicate with parents clearly about the value of the road map, as well as provide them. The next section presents information about the road maps themselves. This overview will help you know why they are important, so you can share that with the parents at the same time, you share the road map itself.