From my perch, I have the tremendous honor of meeting amazing heroes who work tirelessly on behalf of children battling cancer. We may not know their names or learn of the importance of their work on a daily basis. But every day of every week, a community of heroes does its best to make life for a young cancer patient, or survivor, a little less frustrating, a little less exhausting or a little more hassle-free.
Two local heroes at the Kennedy Krieger Institute go to bat every day for kids in our area returning to school after cancer treatment.
This is what I learned when I sat down with Dr. Lisa Carey and Dr. Lisa Jacobson:
Background:
A significant outcome of pediatric cancer treatments, widely seen after treatment, is cognitive impacts. When a parent is receiving the news their child has cancer, the focus is on treatment options, not potential side effects. Yet, it is widely known in the pediatric cancer community that many cancer treatments lead to cognitive impacts, including difficulty sustaining attention, behavioral challenges, learning delays, hearing loss and/or balance and processing disorders. But, when faced with treatment to enable their child to live, the side effects are, of course, not as critical.
For many children who are in treatment, or who have survived cancer, these real outcomes from their aggressive therapies can negatively impact academic success. At the same time, schools are not well prepared to understand the complexity of the impacts cancer and its treatment have on learning and behavior, especially as these effects can change over time.
While pediatric cancers have an 85% survival rate overall, pediatric cancer patients are at least twice as likely not to graduate from high school as typical peers. This is rarely, if ever, discussed with parents during diagnosis and treatment and yet, it is a significant problem for many families managing effects of treatment for their child with cancer.
What I learned is that “educators need to be educated” about the specific types of learning, behavior, and physical impacts kids with cancer or who survived cancer experience. Issues faced by kids during and after treatment may range from falling asleep in class, to poor attention and ability to manage academic tasks, to difficulty with transitions, to poor learning, or even falling down from feeling unbalanced. Yet, none of these conditions falls neatly into an educational diagnosis and therefore, are often not addressed through typical 504 or IEPs.
That’s where the Hospital Education Liaison Program (HELP) comes in.
Lisa Carey, Ed.D.
Lisa Carey, EdD, serves as a liaison between the child/student/patient’s medical team and their school to ensure there is communication and support for the child (patient).
Effectively, this vital position serves as a translator to ensure that the child’s medical condition and education-related needs are known to their school, that the patient’s parent understands available education-related services and how to access them, and likewise, that the medical team is aware of the child’s needs or behaviors taking place at school. Dr. Carey has expertise in designing both school-based and online specialized instruction. This is vital, as many survivors will need continued distance education during the COVID19 pandemic.
As the Hospital-School Liaison, Dr. Carey works with Lisa Jacobson, Ph.D., Director of the Oncology Follow-up Clinic at Kennedy Krieger Institute’s Department of Neuropsychology to use neuropsychological assessments to guide educational planning for patients who have experienced cognitive impacts due to cancer. Recently, Dr. Carey developed a strategy of creating a one-page summary of the neuropsychological evaluation report that outlines each child’s specific needs, both educationally and medically, so that there is a clear two-way flow of information. This summary has proven to be useful and helps to ensure improved communication and understanding.
The HELP program offers three tiers of support to the patient/family:
- Tier 1 includes consultation with the neuropsychologist, including regular attendance at neuropsychology oncology clinic rounds and discussion with providers about patient needs and relevant supports/services. This consult may be the only intervention necessary, or may reveal additional needed supports.
- Tier 2 supports include informational sessions with the patient’s family and/or school team. These sessions are focused on building knowledge and linking families and/or school staff to relevant resources. This may include meetings with the family to explain options for schooling supports, clarify the process of obtaining special education services, and/or provide relevant resources.
- Tier 3 supports focus on building capacity among school staff through professional learning activities such as professional development sessions, classroom observation and feedback (remotely or in-person where feasible), and supports for instructional planning.
The majority of cases served to date primarily utilized Tier 1 and Tier 2 supports. School staff reported interest in Tier 3 supports, but given constraints related to the pandemic, were hesitant to engage in more significant professional learning activities. School teams were grateful to be connected to specific, relevant resources.
Who is eligible:
- Services are available to all pediatric cancer survivors, regardless of diagnosis, from pre-school through 12th grade living in Maryland who come through Johns Hopkins Hospital for treatment or, who are referred to KKI for support.
- HELP services eligibility is limited to pediatric cancer survivors who have received a neuropsychological evaluation so that specific and objective documentation of specific educational needs is available to review.
Each year, ~100 survivors are evaluated in the Neuropsychology Department’s oncology clinic, of which current CCF funding provides approximately 1/4 (~25 families) with HELP. HELP hopes to grow capacity each year for helping additional survivors, their families, and school teams.
Outcomes:
- During the 2020-2021 school year, HELP served 15 patients ranging from 5-17 years old. These patients live in 7 of the 24 counties in Maryland, representing every region of the state.
- Over 60% of patients had completed treatment.
- Patients were racially, ethnically, and economically diverse, with 36% receiving care through medical assistance (public insurance).
- Currently, Dr. Carey is working with 5-8 families, although families do return for follow-up as needed.
Challenges:
Dr. Carey’s vital role, which enhances communication, and, therefore, builds support between a pediatric cancer patient’s medical and educational team, is not billable through insurance. This means that private funding is critical to ensuring this position remains in place.
Successes:
One metric has been tracking outcomes of school support team meetings (i.e., 504 Plan or IEP team meetings): 100% of patients/students have increased the level and/or type of supports provided by the school after HELP/Dr. Carey’s involvement.
Dr. Carey attempts to ensure that a patient’s school team is aware of medical changes (perhaps a treatment regimen changed) and therefore to be aware of fatigue or other potential side effects during class. At the same time, Dr. Carey updates the medical team if the patient is experiencing challenges in school that are likely a side effect of the specific treatment they receive(d).
CCF is proud to partner with KKI to support kids returning to school while enduring cancer treatment, or after completing treatment for cancer.
For more information about this program, feel free to reach CCF or KKI directly.
In partnership,
Tasha Museles
President
The Children’s Cancer Foundation, Inc.
