The following interview was conducted on November 13, 2017 with Jim Hubbard, a school psychologist and counselor, by Kate Kelts, RN, BSN, patient support coordinator for the Children’s Tumor Foundation. Jim has 33 years of experience as a school psychologist working with children and families, as well as living with NF1 himself. This resource is meant to serve as a resource for parents beginning the process of advocating for their child’s education.
What should parents understand about the purpose, function, and laws surrounding the Individualized Education Plan (IEP) and the 504 Plan?
The 504/IEP serves many purposes. It is designed to consistently support the student’s personal learning process, review specific strengths and weaknesses, monitor overall progress and areas of need, assess learning styles and provide positive learning experiences in order for that child to succeed at his/her full potential. IEP/504 meetings are legal contracts that the school district and specific individuals must monitor to ensure that the IEP/504 Plan is being followed. Specific legal safeguards are established for each student when an individual educational plan or 504 Plan is designed.
How important is it that the IEP team at my child’s school understands my child’s specific diagnosis of NF? What information would be most important to share with the team about their medical diagnosis specifically?
It is important the IEP team be aware of how NF can impact a child’s learning and that very often the impact can change from day to day. Many children with NF have difficulties with attention, fine/gross motor skills, speech, visual-spatial abilities, and auditory processing. School personnel should be informed how the child’s current medical condition is impacting educational progress. That information can be gathered from medical personnel and other professionals prior to meeting with school officials. The school should also be aware of a child’s strengths in order to tap their full potential. Every child living with NF is different and constantly developing. The school needs to be informed of any specific changes in your child’s medical conditions in order to best address his/her needs. This process will be on-going throughout the child’s educational career.
What type of evaluation assessments would be recommended to differentiate the child’s strengths & weaknesses?
A comprehensive evaluation should include, but not limited to social/adaptive behavior, visual-motor skills, memory, health and developmental history, intellectual assessments, attention skills, and speech/language (if that is an area of concern). In addition, it is crucial that a qualified individual observe the child in his/her classroom and on the school grounds/playground. A team of qualified individuals, who specialize in their specific area, should do the evaluation.
What can be done for a child who does not qualify for an IEP but still has obvious learning support needs?
A 504 Plan could be developed for those students who do not qualify for an IEP, but still need learning support. In addition, many schools have “learning labs” and after-school tutoring to address specific areas of need. It should also be noted, that if a student doesn’t qualify initially, further assessments at a later time (2-3 years) may reveal that special education services are warranted. Students with NF could qualify under “Other Health Impaired” and do not need to demonstrate a learning disability in order to qualify for special education services. The health impairment (NF) would need to substantially impact educational progress and create academic needs that cannot be addressed without specialized intervention.
How can we help children with NF accept the ways they may be different from other children and teach resiliency?
Resiliency is not something that can be “taught”. Individuals need to develop a healthy lifestyle and have an adequate support system in order for resiliency to occur. Children with NF need to be introduced to a number of activities outside of the school setting. It is important as parents and as school personnel that we emphasize their areas of strength in order to enhance self-esteem. They, like all of us, need to be connected to others through community groups and other social functions. Parents can help their child by setting up and following through on realistic goals that their child wants to achieve. There will be times when they fail at something and parents need to help their children manage strong feelings and develop problem-solving skills during times of failure and frustration. Parents can also help their child by seeing the “big picture” in life. All kids need to be introduced to the “world” so that they can appreciate how all of us are different and unique. Maintaining a sense of humor is vitally important and NF kids should be assisted with embracing their differences rather than being ashamed of them.
What is your opinion on inclusion for children with more significant learning disabilities?
There are many advantages with mainstreaming learning disabled children. First of all, it improves social skills and empathy skills for all students. The non- disabled students learn the importance of tolerance and empathy. Disabled students are introduced to different kinds of students, with a variety of strengths and weaknesses that they may not have seen in a special education setting. However, for mainstreaming to be truly effective general education teachers need on-going support and training. It is vital that special education teachers and general education staff work together to come up with instructional strategies for all students. Experienced and willing general education/ special education teachers should be initially selected when beginning the process. If they have some good experiences, then the word will “spread” and more teachers may be wiling and open to “accepting” SPED students into their classroom. Each disabled student’s IEP should be carefully reviewed to ascertain where he or she could be most successful in a general education setting. If that doesn’t occur, teachers and students may become frustrated if “too much” time is spent re-teaching a concept that 99% of the class has mastered. Students who are mainstreamed, also need to be provided with the life skills necessary for them to become as self-sufficient as possible when they transition out of high school. Some of those needed skills can only be taught in a separate setting and the desire to mainstream should not take away that vital instructional time that many of those students need.
CTF recently published an excellent resource, The NF Parent Guidebook, that you can read here http://www.ctf.org/resources/nf-parent-guidebook.
For more information on NF and learning please also visit our Resource Library at www.ctf.org/resources/resource-library.
Not all of the opinions expressed in this interview reflect those of the Children’s Tumor Foundation.