Education During and After Cancer Treatment
Children with cancer who are undergoing/have undergone treatment may experience changes that require supports in school. These can include sensory changes (e.g., ability to see or hear), motor changes (e.g., coordination, ability to walk), cognitive changes (e.g., ability to pay attention and remember), and behavioral-emotional changes (ability to regulate emotional and behavioral responses and reactions). These changes can be minor or significant, temporary or permanent.
How can I support my child in school?
There are two primary mechanisms available to students to ensure the child can continue to effectively learn and develop in the public school system. While a private school may choose to provide accommodations and services, there is not a legal mandate to do so.
Within the public school system, a student can benefit from a 504 Accommodation Plan or an Individualized Education Plan (IEP). When seeking these resources, it is essential to always have requests and resolutions in writing.
It is important to remember that each state, and each district, may interpret the laws governing IEPs and 504 Accommodation Plans differently, and will also have varying timelines for evaluation and implementation. Make sure you are familiar with your local regulations.
What is a 504 Accommodation Plan?
A 504 Accommodation Plan arises from Section 504 of the Rehabilitation Act of 1973. This law mandates that students with disabilities have their needs met. Federal law defines an individual with a disability as “any person who: (i) has a mental or physical impairment that substantially limits one or more major life activity; (ii) has a record of such an impairment, or (iii) is regarded as having such an impairment”. Each state and district can interpret “limits one or more major life activity” differently. The goal is to ensure that all students have equal access to the curriculum.
Accommodations that may be used, but are not limited to, include:
- Access to a water bottle
- Being allowed to wear hat/wig/head covering
- Use of an elevator
- Short term modification of the class schedule
- Extended time on tests or assignments
- Modified homework assignments
- Provision of class notes from a peer or teacher
- Extra set of textbooks for home use
- Preferential seating
- Behavioral supports such as increased positive reinforcement
A student with cancer will often be granted a 504 Accommodation Plan. A letter from your medical team is required when requesting a 504 Accommodation Plan. These accommodations can be in effect well after treatment is completed.
A more comprehensive plan that provides specially designed instruction is an IEP (Individualized Education Plan).
What is an Individualized Education Plan (IEP)?
An IEP stems from the Individuals with Disabilities Education Act (IDEA). This applies to children from birth (early intervention) through high school graduation (up to age 21). This is a federal mandate that each child will have access to a “free appropriate public education”. An IEP drives specially designed instruction, which in addition to accommodations listed in a 504 Accommodation Plan, can include the type of classroom placement, direct services and intervention (e.g., speech-language therapy, occupational therapy, counseling) AND measurable goals.
How can my child qualify for an IEP?
Always place a request in writing to have your child evaluated by the Child Study Team (these teams can go by different names in each school district). This comprehensive evaluation often includes parent interviews and form completion, direct observation of, and interview with, the child, feedback from teachers, and performance-based assessment (e.g., standardized test result review, a psychoeducational evaluation focusing on cognitive and academic abilities). At times a neuropsychological evaluation can be submitted in place of the psychoeducational evaluation.
Once all of the data from family, teacher, student, and evaluations have been collected there will be a determination if the student is eligible under 1 of 13 possible categories. If the student is eligible, the team, including the parent(s)/guardian(s) will meet to discuss the possible accommodations, services, and goals. An IEP must be revisited at least once a year, though this can be more frequent. A re-evaluation is required at least every 3 years, though it can be more frequent.
If the family does not agree with the school’s decision about eligibility or about required supports and services there are procedures and legal protections to appeal the decision. For more resources on developing an IEP see www.wrightslaw.com.
How can a neuropsychological evaluation help develop IEP goals?
Medical teams recommend that children who have received cancer-directed treatment that can result in a risk for cognitive changes should participate in a neuropsychological evaluation. A neuropsychological evaluation is more comprehensive than a psychoeducational evaluation. In addition to examining cognitive and academic skills, this assessment will explore the abilities which contribute to academic and daily life success. This includes verbal abilities (receptive, expressive and pragmatic skills), visual-spatial and visual-motor abilities, verbal and visual memory, attention and executive functions (including inhibition, planning, problem-solving and organizing), social-emotional functioning, and independent adaptive functioning. The neuropsychological evaluation can be submitted to the Child Study Team, and if the school chooses, will replace the in-school assessment. A neuropsychological evaluation can provide critical information that is used to design specific measurable goals. IEP goals are not limited to specific academic skills! They can include targets for language development, social-emotional development, independence, etc.
Who can help?
Many people inside and outside of the school system can contribute to the 504 Accommodation Plan and IEP development. Parents/guardians, educators, intervention therapists, neuropsychologists, social workers, nurses, and physicians can each have unique information that contributes to the document. If you are looking for more information about the 504/IEP process there are many websites and books that can answer specific questions. Talk to your treatment team for suggestions.