Two BFFs for Back-to-School

Authors: Kathi Garza, Jill Gorman and Judi Duffey (reprinted with permission from Albinism Insight, Autumn 2018)

Keywords: albinism, National Organization for Albinism and Hypopigmentation, NOAH, advocacy, family, inclusion, resource

Just as we come off of the excitement of NOAHCon2018, it is time to begin preparing for the upcoming school year. There are new clothes and shoes to be purchased. Hours will be spent in supermarkets with school supply lists and bargaining children as you hunt for colored folders, pens, binders, erasers, and what may feel like an endless supply of #2 pencils. Locating all of the tools your children need to be successful in the classroom is important, but do you, as a parent, have the tools you need to support your child’s success in the classroom as well?

Whether your student is starting kindergarten or high school, your involvement with your child’s programming and instructional team can play a big role in supporting success in the academic setting. NOAH, the National Organization for Albinism and Hypopigmentation, offers two tools to guide you on your journey to help your child reach maximum potential in school. The CARE Project (Creating an Albinism Resource for Education) provides parents of school-aged children with albinism, educators and other professionals with resources and information to assist in formulating education documents including the IEP, IFSP, or 504 Plan. The SchoolKit provides information and resources to guide parents in supporting general education teachers when a student with albinism will be in their classroom. Here are the Top 10 lists for each tool that we think you will find helpful when advocating for your student and while providing support to your student’s instructional team:

The CARE Project

1. Review IFSPs, IEPs, and 504 Plans for students with albinism in an organized way to help you contribute to the planning of your own child’s education document.
2. Research documents by state to see what has been offered or achieved in your own state.
3. Research documents by grade to gain insight for Assistive Technology recommendations for other children with albinism.
4. Research documents by grade to gain insight for Orientation and Mobility goals for other children with albinism.
5. Research documents by grade to gain insight for social development goals for other children with albinism.
6. Research documents as you prepare for a transitional IEP meeting by accessing documents by grade.
7. The CARE Project is stronger with you! The database is continuously being updated with submissions from NOAH families with redacted examples of Individualized Education Program documents.
8. Research documents by visual acuity.
9. Full educational documents are easily accessible to parents, educators and professionals from the NOAH website (www.albinism.org/care).
10. You can reach out directly to a CARE Project team member if you have questions about resourcing the database by emailing

NOAH SchoolKit

1. Albinism Terminology. List at your fingertips that covers definitions for Oculocutaneous Albinism (OCA) and Ocular Albinism (OA), as well as terms such as nystagmus and null point.
2. Summary of instructional team roles and the services they provide.
3. List of Safety and Emergency considerations for the instructional team to take into account on the playground, during field trips and in preparation for events such as fire drills.
4. A fact sheet to share with physical education teachers which outlines solutions to possible concerns that may arise during physical education class.
5. Suggested questions to review with the classroom teacher at the beginning of the school year concerning several topics such as classroom set-up, student accommodations and who is on your student’s instructional team.
6. Tips for parents from parents.
7. Checklist of “to-do’s” for parents when preparing for the new school year.
8. A list of possible accommodations to be discussed with the instructional team based on your student’s classroom and instructional needs.
9. What is the Expanded Core Curriculum and how can the development of ECC skills be supported beyond the classroom?
10. Suggestions on how to empower your student by involving them in the process of educating the instructional team.

These Top 10 Lists are just a small sample of the many resources and informational tools available to parents and educators of children with albinism. To review and contribute to the CARE Project, please visit www.albinism.org/CARE. To access documents and resources from the SchoolKit, please visit www.albinism.org/SchoolKit.