Empowered and Prepared: A 2025 Playbook for Food Allergy Families

Empowered and Prepared: A 2025 Playbook for Food Allergy Families

by Aleasa Word, FAACT Vice President of Inclusion

January 2025

Families living with food allergies have to deal not only with the daily struggles of managing food allergies but also with a growingly uncertain landscape for human, medical, and disability rights. Whether it’s healthcare accessibility, changes in legislation, societal attitudes, or cultural nuances, food allergy families will need to be prepared to advocate, adapt, and thrive.

Our first post of the new year includes some practical strategies to help your family stay resilient and informed.

1. Keep an Eye Out for Legislative Changes

The key to preparedness is an awareness of possible changes to laws and policies that may impact your family and community. Here are a few things to put on your radar:

• Healthcare Legislation: Changes in healthcare laws and insurance guidelines have the potential to impact access to life-saving epinephrine, allergist visits, and other medical necessities. Look for changes to the Affordable Care Act or state healthcare plans, especially changes to coverage for or definitions of pre-existing conditions.
• Disability Rights: Food allergies may constitute a disability under the Americans with Disabilities Act (ADA) when the allergies substantially limit a major life activity. Changes in legislation regarding disabilities may impact accommodation requirements at federally/state funded schools, workplaces, and public event venues.

What You Can Do:

• Sign up to receive regular newsletters from advocacy groups like FAACT.
• Track state and federal legislatures with resources such as Congress.gov.
• Join FAACT-recognized support groups in your area to stay connected with others who can share current information and resources.
  
  

2. Bolster Your Advocacy

In uncertain times, self-advocacy becomes more critical than ever. Whether you are a caregiver, patient, healthcare provider, or someone who works with schools, restaurants, or lawmakers, knowing how to communicate and advocate is of high importance.

Advocacy Tips:

• Document Everything: Keep a record of correspondence with schools, employers, and healthcare providers. Written proof of requests and responses can be valuable.
• Know Your Rights: Learn about Section 504 of the Rehabilitation Act of the ADA and other laws that cover the rights of people with disabilities. Familiarize yourself with FAACT’s Education Advocacy tools and resources.
• Get Vocal: Reach out to elected officials on the local, state, and federal levels to talk about the importance of protecting the rights of individuals with food allergies and disabilities.
  
  

3. Review Your Medical Plan

Access to predictable and affordable medical care is of utmost concern for families coping with food allergies. Establishing a medical plan minimizes chaos in those moments when parents feel their child is at most risk.

How To Improve Your Medical Plan:

• Have Enough on Hand: Keep enough epinephrine and other prescribed medicines on hand and check expiration dates. Using apps or smart phones to keep track of expiration dates can be helpful.
• Identify Backup Providers: If your allergist or primary care physician becomes unavailable or no longer accepts your insurance, know where to seek alternative care.
• Leverage Telehealth: Familiarize yourself with telehealth options for accessing care during emergencies or disruptions. Check co-pays, especially if you have a high-deductible plan.
• Verify Insurance Coverage: Regularly check your insurance policy for changes in coverage for allergy-related needs, including acceptable formulary medication changes.
  
  

4. Educate Your Personal Community and Family

Misunderstandings about food allergies can lead to discrimination, reduced access to necessary accommodations, and misinformation regarding management of care in families, communities, and schools. Proactive education helps build an informed, supportive community.

Educational Outreach Ideas:

• Host Information Sessions: Partner with local schools, churches, or community centers to educate others about food allergy safety.
• Distribute Resources: Share allergy action plans, posters, and guides with caregivers, teachers, and coaches. FAACT has a variety of free downloadable resources online.
• Use Social Media: Share accurate and engaging content about food allergies on your social media feeds. Be careful not to offer medical or legal advice.
  
  

5. Get Ready for School and Workplace Challenges

Schools and workplaces are critical areas where rights and accommodations can be tested. Planning ahead is key to preparing your family for any barriers.

School Readiness:

• Update 504 Plans: Ensure your child's 504 plan or IEP reflects their current needs. Have strong letters from your board-certified allergist to support the care recommendations.
• Connect with Staff: Establish good relationships with teachers, administrators, and school nurses. Provide explicit instructions for dealing with allergies and follow up in writing.
• Prepare Emergency Kits: Give school staff your student’s epinephrine devices, allergy action plans, and any other prescribed medications or tools in accordance with guidelines regarding self-carry or school stocking of items.

Workplace Readiness:

• Request Accommodations Early: If you or a family member has allergies that impact workplace safety, communicate these needs to the Human Resources department. Check state and local laws as well as how federal laws may come into play with company policies. Get medical documentation BEFORE you need it!
• Educate Colleagues: Offer to share information about food allergies to foster understanding and support within your level of comfort. Ensure you maintain any health privacy covered by law.
  
  

6. Check Your Mental Health and Emotional Resilience

Navigating uncertainty can take a toll on anyone’s emotional well-being. Building resilience is essential for managing stress and maintaining a positive outlook.

Strategies for Emotional Health and Resilience:

• Engage in Mindfulness: Techniques like meditation and deep breathing can reduce anxiety.
• Encourage Open Communication: Create a safe space for family members to share fears or frustrations. Consider a family journal board.
• Seek Support: Join FAACT-recognized support groups or seek counseling from mental health professionals who understand the unique challenges of food allergies.
  
  

7. Set Up a Financial Safety Net

Families managing food allergies experience additional costs not seen by others. Financial stability is critical during times of uncertainty, especially when medical expenses are involved.

Tips for Financial Readiness:

• Start an Emergency Fund: Set aside money for unexpected medical costs or legal fees.
• Identify Assistance Programs: Many organizations and pharmaceutical companies offer financial assistance for families managing chronic conditions.
• Review Your Medical Benefits: Ensure you’re maximizing benefits from health savings accounts (HSAs) or flexible spending accounts (FSAs).
  
  

8. Make Technology Work For You

Technology can be an important ally in the day-to-day management of food allergies and emergency preparedness.

Recommended Tools:

• Reputable Allergy Apps: Use apps like Spokin and Fig to find ideas for safe foods and restaurants. Always check yourself before you try something new and manage your allergies in accordance with your personal health and medical plans.
• Medical Alert Systems: Consider a medical alert bracelet or necklace.
• Digital Advocacy Platforms: Platforms like VoterVoice can help you advocate for the rights of those living with food allergies and other conditions.
  
  

9. Create a Family Emergency Plan

Emergencies can be difficult for any family, whether natural, social, or personal. A detailed plan ensures everyone knows how to respond at home or while traveling. Review this plan together regularly to ensure success during an emergency.

Important Ingredients for an Emergency Plan:

• Emergency Contacts: Keep a list of allergists, primary care doctors, pharmacists, and emergency services. When traveling, research emergency care facilities near where you are going.
• Food Supplies: Stock a reasonable amount of non-perishable, allergy-safe foods in case of disruptions to manufacturing or food supply. This is also helpful if you anticipate economic impacts in the near future.
• Communication Protocols: Establish how family members will stay in touch during emergencies. Test your plan and create safe words or phrases if you need to.

You are not alone in these challenges. Food allergy communities and advocacy groups offer strength, resources, and a unified voice for change. Stay up to date on all the ways FAACT is supporting the community through our website, Facebook groups, and other social media channels. Follow other social media influencers and thought leaders in the food allergy space who focus on advocacy and rights.

Together we can face challenges ahead by staying connected and informed, strengthening support networks, and putting a premium on the safety and welfare of those we care for.

Know that your small changes are part of a much bigger movement to help keep those living with food allergies safe and healthy.