Senior Resources


Aging Well with Celiac Disease

Hosted by the National Celiac Association and the Harvard Medical School Celiac Education & Research Program.

Check that Your Medications are Gluten- Free


More Help

Check out these steps for success and strategies for advocacy when you or a loved one encounters problems accessing safe, gluten-free food in a congregate living facility.

Introduction

Seniors with celiac disease face unique challenges when transitioning to a nursing home, assisted living, or independent senior living community. This guide aims to empower seniors and their families to navigate these challenges effectively. It focuses on understanding one’s legal rights, choosing the right facility, advocating for necessary dietary accommodations, and handling potential rejections based on dietary needs. The ultimate goal is to ensure a safe, comfortable, and dignified living experience for seniors with celiac disease in their chosen community.

Understanding Your Rights

Under the Fair Housing Act (FHA) and the Americans with Disabilities Act (ADA), seniors with celiac disease are entitled to reasonable accommodations in housing facilities. Facilities are generally capable of providing gluten-free dietary options.

When researching facilities, it’s crucial to assess their capability to meet gluten-free dietary needs and to understand the legal obligation to accommodate such requirements. Download [this letter: link to PDF] that outlines your rights as someone with celiac disease.

Choosing the Right Facility

Selecting an appropriate facility involves:

  1. Research and Shortlisting: Identify facilities with a track record or willingness to accommodate special diets.
  2. Visiting and Evaluating: Discuss gluten-free meal preparation and cross-contact prevention with staff.
  3. Dietitian Availability: Look for facilities with knowledgeable dietitians.
  4. Reviewing Meal Plans: Evaluate how well a facility can adapt meals to a gluten-free diet.
  5. Assessing Care Philosophy: Ensure the facility’s approach to care aligns with the senior’s needs.
When Advocating for Your Dietary Needs

Never be afraid to speak up:

  1. Educate Yourself: Understand your rights under the FHA and ADA.
  2. Clear Communication: Express dietary needs clearly and assertively to staff.
  3. Document Requests and Responses: Keep records of your accommodation requests and any responses or refusals.
Handling Rejection Based on Celiac Disease:

If a facility refuses to accommodate your gluten-free diet, it’s important to:

  1. Seek Clarification: Ask for a clear explanation of the refusal, preferably in writing. Persons to contact are the facility’s head of nutrition/dietary services, dietitian, and/or other front-line staff.
  2. Document the Interaction: If the interaction is done verbally, keep detailed notes of whom you spoke with and what was said.
  3. If the issue persists: Escalate to the facility’s administration.
  4. If there’s still no satisfactory resolution: Contact the long-term care ombudsman in your state. Click here to learn more and to find your ombudsman.
  5. As a final recourse: File a complaint with the state’s office of civil rights or contact a private attorney.
  6. Regarding filing a complaint with the Office of Civil Rights or reaching out to a private attorney, this can be done in parallel with steps 2 or 3, if the violation is severe or the need immediate.
  7. Please note: Every state has its own civil rights office; some states have their enforcement arm under the Attorney General’s office, and others have an Office of Civil Rights, Division of Human Rights, Civil Rights Commission, etc. – they are all worded differently depending on the state.
Practical Tips for Daily Living

Daily management involves:

  1. Stay Informed and Share Knowledge: Continuously learn about gluten-free living and share insights with facility staff.
  2. Participate Actively: Engage in menu planning and community activities related to nutrition.
  3. Create a Support Network: Connect with other residents with dietary restrictions.
  4. Personal Gluten-Free Supplies: Maintain a supply of gluten-free snacks and staples.
  5. Ongoing Menu Review: Regularly review and discuss meal options with the facility.
Conclusion

Navigating life in a senior living community with celiac disease requires informed decision-making, active self-advocacy, and resilience in the face of challenges. Understanding and

asserting one’s rights, choosing an accommodating facility, and being prepared to address potential rejections are crucial steps. This guide aims to empower seniors with celiac disease and their families to achieve a comfortable and dignified living experience, ensuring their dietary and healthcare needs are respected and met.