Special Education Options and Advocacy for Children with Cancer
In 2012, I was awarded the Women Lawyers Association of Los Angeles, Fran Kandel Public Interest Grant to create a guide to special education options for parents of children with cancer. The guide is a basic primer on the Individuals with Disabilities Education Act (IDEA) that takes the reader through what it means to qualify for protection under the law, to creating an Individualized Education Program (IEP), to legal recourse available in the event of conflict with a school district. It also addresses highlights of Section 504 of the Rehabilitation Act and 504 plans as well as the Americans with Disabilities Act (ADA), with specific information about how these laws relate to childhood cancer.
The latter two laws can be important to protect children with cancer and cancer survivors from discrimination and unequal access to education in the event that they do not qualify under the IDEA standards, which can be more difficult to meet in some cases. The Disability Rights Legal Center, where I served as a law clerk for much of law school, sponsored and provided guidance for the project. The guide is a resource that the DRLC can distribute to clients in need of this information in a simplified, easy to consult format. Some of the best assistance to parents going through the special education process is to help them to be better advocates for themselves, and ultimately for their children. Informed parents are more likely to feel empowered and receive better results when they approach a school district about obtaining services for their child. My goal for this project was to create a product that increases awareness of these legal issues, and thereby increases the chance that more children affected by cancer will receive the continuing educational support they need and deserve.
Approximately 13,400 children in the United States are diagnosed with cancer every year. Children with cancer, such as leukemia, struggle with symptoms including fever, infection, anemia, bruising, bleeding, bone and joint pain, fatigue and loss of appetite. Neuropsychology research has shown that not only do these children experience disabling symptoms at the point of diagnosis, but many also experience severe, permanent, neurological damage resulting from medically vital chemotherapy and radiation they receive during treatment. Often the neurological damage surfaces many years after treatment. Researchers have found long-term survivors of childhood leukemia to be significantly delayed in processing speed, working memory, academic achievement scores, verbal learning, attention, and IQ when compared to control groups. Sadly, this means that children with cancer and blood diseases who survive the trauma of a life-threatening illness are further stricken by a series of additional traumas as they battle the related health, cognitive, and academic challenges implicit in surviving the disease.
Children with severe health impairments like cancer are too often out of the sight and mind of public school districts for a variety of reasons. Many student patients must miss a significant portion of at least one school year. At some point, however, a number of these students become healthy enough to benefit from instruction at home or in the hospital. Later, many will need comprehensive special education evaluations, services, and accommodations to address cancer’s residual effects when they return to their school site. Nonetheless, many of these children go without legally mandated special education services and disability accommodations. These brave cancer survivors should receive far greater support as they transition into back into what should be a more normal life.
The IDEA, Section 504, and the ADA guarantee children with cancer the right to special education services and disability accommodations. The IDEA provides the right to special education and related services to students who qualify within certain categories of eligibility. One of these is "Other Health Impairment,” which specifically includes childhood leukemia as a qualifying disability. Another is "Specific Learning Disability,” a category that many students in remission will meet up to several years after chemotherapy and radiation. Services for students with Other Health Impairment or a Specific Learning Disability may include tutoring, Resource Specialist Programs, nursing services, modified assignments or schedules at school, or home or hospital instruction, provided through an IEP.
Students with cancer and other blood diseases need considerable advocacy to enforce their legal rights. The immediate shock of a cancer diagnosis and the trauma of treatment mean that parents and children will, of course, shift focus away from the child’s education and onto basic survival, undergoing essential medical treatments. During remission, parents may not necessarily recognize when their child begins to experience signs of a new disability and they likely will not know that their child is entitled to comprehensive special education services. Unlike developmental or physical disabilities that some children have from birth, parents of children with cancer will not necessarily associate their child’s recently developed needs with those requiring special education. They do not always consider themselves, as many parents in this field do, the parents of a "special needs” child. Even if parents are aware of their child’s education rights, it is always challenging for them to navigate the complexities of special education law without legal representation. Add to that the almost inevitable financial drain of providing care to a chronically ill family member, and it is not difficult to imagine why, for many of these families, legal assistance is out of reach.In embarking on this project, I was also very mindful of a fact that looms over any project involving childhood cancer: too often, children do not survive cancer. Truthfully, the necessity of education rights pales in comparison to this life or death situation. Yet, to me, this project represents the hope of survivorship in the face of this fact. When a child is diagnosed with cancer, we do not know whether she will be a cancer survivor, but we can prepare for, hope for, and believe in her survivorship from the outset. If a child can battle cancer, we can do this by advocating for her right to be educated as an equal to her peers.
Ms. Gross received WLALA’s Fran Kandel Public Interest Grant in 2012. She is currently a Bridge to Practice Fellow at Disability Rights Legal Center’s Inland Empire Program in Ontario, CA.