GENETIC ALLIANCE BY SHARON ALEXANDER, MPA
The Advocacy ATLAS has over 200 tools and resources developed by parents, parent advocacy groups, condition-specific advocacy groups, disability groups and other partners.
This time of year can be both exhilarating and challenging for the whole family. Whether returning to school or starting school for the first time, there are a lot of things to do and moving pieces to consider. For children with special healthcare needs and their families, this process may be even more complicated.
Not Sure Where to Start?
You’re not alone. Oftentimes parents find themselves feeling that same feeling as when they became a parent and started along their journey of raising a child with special healthcare needs. No one can share your exact same experience but, sometimes, hearing what worked or didn’t work for another family can bring relief, comfort, or at least make you think about what may be to come and how you would deal with different situations. That’s why Genetic Alliance, Parent to Parent USA, and Family Voices created the Advocacy ATLAS (www.geneticalliance.org/advocacy-atlas). You may not realize it but every time you need to speak up to get something for yourself or your child you become an advocate. Sometimes all it takes is crafting your message in a way that is meaningful and resonates with your target audience to get what you want or need.
We know that advocacy is an important part of life for individuals with genetic conditions, disabilities, and/or special healthcare needs and their families. Individuals advocate on behalf of themselves or others every day to communicate needs, share experiences, and take steps to get what they want and need. The Advocacy ATLAS has over 200 tools and resources developed by parents, parent advocacy groups, condition-specific advocacy groups, disability groups and other partners. ATLAS, like in the title, stands for Accessible Tools for Leadership and Advocacy Success. Our goal was to create a site with the right tools or templates that can be customized to fit a family’s needs along the journey of life. Resources are grouped into 10 different topic areas to make finding the right tools even easier. Each topic page has a story from a family about their experience advocating in that area.
Thinking Ahead: Who, What, Where, When, and Why?
As your child/(ren) get ready to go to school, consider all the people they will interact with at school – their various teachers, including the physical education teacher and coaches, as well as school nurses and after-school program leaders. The Advocacy ATLAS has resources on Education Services and Supports, including a template that may be helpful when writing a letter or preparing to meet with any of these individuals.
Confused about IEPs? There’s a great background presentation created by a parent leader on IEPs as well as an IEP Tip Sheet. Parents and support organizations created all of these resources because they saw a need to help other families navigate through the sometimes-tough journey through life and life experiences. Oftentimes all it takes to be more prepared is seeing important considerations listed out so you can know you’ve got your bases covered. Maybe you’re looking for a starting point or template you can tailor to your and your child’s needs to help them have a successful school experience.
Browsing the other resource areas may be helpful too: for example, the Communicating About Your Health page has helpful tools to explain your/your child’s likes/dislikes, personality, and health needs including a presentation template developed by a mom to introduce her daughter to peers.
Other Back to School Resources
GEMSS: Genetics Education Materials for School Success
www.geneticalliance.org/sites/default/files/publicationsarchive/attending_with_genetic.pdf
This site provides teachers and parents more information on genetic conditions as well as helpful strategies for use in classrooms, including ideas for emergencies, field trips, diets, communication, instruction, and more.
IEP Checklist App from the Parent Educational Advocacy Training Center
www.peatc.org/peatc.cgim?template=IEPChecklistiPhone
Individualized Education Programs support the needs of school-aged children with disabilities. This app, available for iPhone, helps parents of students with special needs become better-informed advocates by making IEP information easier to access
More About the ATLAS
The Advocacy ATLAS was created as part of a larger initiative called the National Genetics Education and Consumer Network (NGECN). NGECN is program led by Genetic Alliance, a non-profit dedicated to transforming health through genetics. The program is funded by the Health Resources and Services Administration (HRSA) to create a network of partnerships and accessible tools. Our goal is to improve access to and knowledge about genetic services for the public and individuals with genetic conditions and their families. By working with partners such as Parent to Parent USA and Family Voices, we hope to empower individuals and families by making resources and information more accessible. The Advocacy ATLAS was developed by Genetic Alliance in partnership with Parent to Parent USA and Family Voices. This project is funded by the Health Resources and Services Administration (HRSA), Grant no. U22MC04100, National Coordinating Center for the Regional Genetic Services Collaboratives.
Tell us what you think! Are there any resources that you would like to see or found useful on the Advocacy ATLAS? Email Sharon Alexander, Program Manager at salexander@geneticalliance.org •
ABOUT THE AUTHOR:
Sharon Alexander serves as a Program Manager at Genetic Alliance, overseeing public education efforts aimed at increasing access to genetic services and the quality of genetic services.
EXAMPLES OF TOPICS YOU MAY WANT TO ADDRESS IN A LETTER TO SCHOOL
Make sure all of this information is updated on a regular basis. For more suggestions and a template to start your letter, check out: Attending School with a Genetic Condition: A Parent’s Guide
www.geneticalliance.org/sites/default/files/publicationsarchive/attending_with_genetic.pdf
REQUIRED MEDICATION DURING THE SCHOOL DAY
o Access to private bathroom in the nurse’s office
o Specific exercises (such as airway clearance for children with cystic fibrosis)
o Special diet supervision
o Any other special instructions
o Identify who is responsible for the child’s care each day and in case of the caregiver’s absence
o Emergency contact information for parents, relatives, friends
o Provide statements from doctor or specialist regarding treatment and emergency protocols, if necessary
o Name of doctor or specialist who coordinates care
o Name of hospital or medical center where the child is treated
o Current list of medications
o Allergies
o Current weight, height, other baseline information
SPECIAL CARE NEEDED DURING THE SCHOOL DAY EMERGENCY PROTOCOL
o Name of medication
o Dosage
o Dosing instructions
o Name of prescribing doctor
o Written permission for administering medication
o Permission for older students to carry medicine themselves to help alleviate symptoms (such as Tums)
o Address when and how the child will get the medicine
