This Global Genes Quick Guide is a resource for advocates focused on pressing topics causing challenges in their lives and communities.
A Global Genes Quick Guide: Know Your RARE Rights
Empowering You with Knowledge, Confidence, and Next Steps
Navigating life with a rare disease can feel isolating and uncertain—like there’s no roadmap for what to ask, expect, or demand. The systems you encounter—whether medical, educational, or insurance-related—can seem designed for everyone but you.
Fortunately, rare disease parent and advocate Kelley Coleman has created the guidebook so many families wish existed. In her powerful resource, Everything No One Tells You About Parenting a Disabled Child, Kelley shares real-life insight informed by lived experience and expert interviews. Even more valuable: every chapter ends with a checklist to help you reflect, take action, and move forward with clarity.
We partnered with Kelley to share three of these essential checklists—focused on accessibility, insurance, and education. Each one highlights rights that are often misunderstood or overlooked, especially for those impacted by rare disease. While Kelley’s book centers on parenting, the rights and strategies shared here apply broadly, including to adults navigating rare diagnoses.
Understanding your rights is one of the most powerful tools you can carry. These checklists will help you ask better questions, tap into the right resources, and advocate with confidence—ensuring that individuals and families living with rare diseases are informed, heard, and supported.
📋 Your Accessibility Rights Checklist
Ask Yourself
- Do I understand the accommodations and access my child is entitled to under the law?
- What role models and organizations am I following in the disability advocacy world?
- Am I teaching my child to self-advocate?
How can I involve my child in their own advocacy from an early age?
“I learned early on that the world wasn’t going to adapt to me — at least, not on its own. If I wanted to be heard, understood, and included, I had to take the lead. I had to become my own self-advocate. That meant speaking up, even when it was uncomfortable. It meant preparing for challenges others didn’t always see. And it meant showing up for myself — every single day.
I always had a Plan A: the way I hoped things would go. But I also had a Plan B: the backup, just in case. That wasn’t about expecting failure — it was about being ready. It gave me confidence in a world that could be uncertain and unfair. Self-advocacy doesn’t mean going at it alone. It means knowing who you are, recognizing your needs, and having the courage to ask for what’s right. It means understanding your worth — and never letting the world make you feel like you deserve less.”
– Kendra Gottsleben, an adult living with MPS VI, author and founder of Rare by Design
Where Do I Start?
- Learn the basics of disability history and rights.
- Seek out real-life disabled role models and peers.
- Follow disabled leaders and disability advocacy organizations on social media.
- Include your child in conversations, meetings, and advocacy any time their rights, accommodations, and future are being discussed.
📋 Your Insurance Rights Checklist
Ask Yourself
• Do I understand the terms and coverage of my insurance policy?
• Do I have a current copy of my summary of plan benefits?
• Do I know what services (medical, therapeutic, equipment, etc.) are necessary for my child?
• Do I know where to find coverage information for these services in my insurance plan?
• Do I understand what government resources are available to my child in my state and how to access those resources/benefits?
• Do I understand my state’s eligibility criteria for government insurance? Is my child’s coverage based solely on disability, or does family income factor into coverage?
• Do I need to submit a disability-related waiver through my state social services agency in order for my child to qualify for disability-related benefits?
If my child is nearing adulthood, how am I preparing them to understand this process, and involving them to the fullest extent possible?
“You know who loves dealing with insurance? No one. It’s the paperwork we all put off – because we just don’t know where to begin. When we learn what our insurance plan includes, we can tackle the paperwork and fully use our plans as they are meant to be used – that’s what they’re there for. I got an amazing email from a mom who said “I didn’t know what to do with an insurance claim. Then I read your book and I knew how to appeal it. Now I’m holding a check for $3500 that I never would have gotten before.” We are walking away from money – and letting the insurance companies win – if we don’t know how to navigate our plans.”
– Kelley Coleman, rare mom and author.
Where Do I Start?
If you have private insurance:
– Be sure your child is covered.
– Find, read, and understand your summary of plan benefits (SPB) or summary of benefits and coverage (SBC).
– Ask for a case manager or a direct contact (this may not be an option with your insurance, but it is worth a try).
– Get clarity on specifically which doctors, hospitals, therapists, supports (for example: feeding tube supplies, diapers, etc.) are covered if you do not have this information after reading your SPB or SBC.
If you have state health insurance:
– Confirm that your child is covered based on disability rather than based on income (some may qualify under both categories). If your child qualifies based on disability, your state social services agency may need to submit a disability waiver and/or supporting documentation.
– Confirm if you will be using this state health insurance as your only, primary, or secondary insurance.
– Get clarity on which doctors, hospitals, therapists, supports (for example: feeding tube supplies, adaptive equipment, diapers, etc.) are covered.
– If this insurance is your secondary insurance, confirm if you need denial letters or documentation from your primary insurance in order to get services or supports covered.
– Ask other parents what can be covered via state insurance, because odds are no one else is going to tell you, and each state is different. • Social services in your state:
– Identify your state agency providing services to individuals with disabilities. Search online using keywords such as: your state and disability services (e.g.: Indiana disability services), or state name and developmental disabilities (e.g.: Indiana developmental disabilities) or state and health and human services (e.g.: Indiana health and human services).
If you can’t find the information you’re looking for online, call your state governor’s office and explain that you are looking for the state government office that serves and supports people with disabilities. Local disability-specific organizations may be able to help you find this information as well. Search online using keyword combinations such as: autism and your state, rare disease and your state, visual impairment and your state, etc.
– Determine if your child qualifies for services. Schedule an evaluation.
– Talk to other parents about what services are available.
📋 Your Education Rights Checklist
Ask Yourself
• Do I understand how to get my child evaluated for an IEP?
Do I need to seek clarification on the IEP process from our school district in order to truly be an equal member of the IEP team?
• What parents do I know who have been through the IEP process? What questions do I have for them?
• Does my school district offer IEP education/information classes?
• How can I involve my child in their IEP process to the maximum extent possible?
“Remember, you can request updates to your child’s 504 plan at any time during the school year. If something was overlooked, you can ask to have it added later. As a parent, please continue monitoring and ensuring the accommodations are being implemented throughout the school year.”
– Elle Cole, author, caregiver, and advocate for families navigating Sickle Cell Disease and Type 1 Diabetes
Where Do I Start?
- Schedule the IEP meeting.
- Notify the school who will attend, that you’ll record it, and that you are requesting all relevant documentation in advance.
- Schedule a lawyer and/or advocate meeting if you’d like.
- Bring to the IEP meeting:
– Your questions in writing
– Your copy of the IEP
– A recording device (fully charged)
– A notebook and pen
– Snacks - After the IEP meeting:
– Take the unsigned document home, read it, get clarification as needed.
– Meet with your lawyer/advocate if that’s your thing.
– Sign the document and return it—only after you are certain you fully understand it and that it gives your child FAPE (that is: you are satisfied with what the IEP provides and/or you have contested parts you disagree with and those issues are resolved).
– Breathe. You did it!
“Pro tip: Make sure that every single communication between you and your school district about your child’s education is in writing. Send emails. If you communicate over the phone, it’s like it never happened. “
– Bo Bigelow, Rare Dad, Chairman, Foundation for Hao-Fountain Syndrome, IEP Attorney
Links to Related Resources:
“Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports ” by Kelley Coleman
The Circle of Care Guidebook for Caregivers of Children with Rare and/or Serious Illnesses.
“Born Extraordinary: Empowering Children with Differences and Disabilities” by Meg Zucker
“Rare Mamas: Empowering Strategies for Navigating Your Child’s Rare Disease” by Nikki McIntosh
Accessibility Rights Resources:
You can use these national associations to find the center for your state.
Week in RARE 2024 Panel Video: Disability and Access
Advocating for Inclusive Playgrounds
All Wheels Up – Air Travel Rights
Why Flying with a Wheelchair Is a Civil Rights Issue
The Not-So-Friendly Skies: Flying When You Have a Rare Disease
Addressing Independence and Accessibility with Rare Disease – Two Disabled Dudes podcast
Inclusion with Kendra Gottsleben – National MPS Society: Our Voices podcast
Nothing About Us Without Us – The Handicapable Podcast
Insurance Rights Resources:
Navigating Health Insurance Toolkit
RARE Webinar Series Health Insurance 101
Getting Financial Help Qualifying for Disability and Other Insurance Matters – Video
One Secret Insurance Companies Do Not Want You To Know
2022 FAIR Toolkit: Understanding and Navigating Medicare
Health Insurance Coverage 101 in 2 minutes – Video
What Young Adults with Rare Conditions Need to Know About Health Insurance – podcast
Navigating Health Insurance Issues – Video Part 1
Navigating Health Insurance Issues – Video Part 2
Life with Lowe: When Insurance Won’t Cover Behavioral Therapy
Education Rights Resources:
2024 Week in RARE panel: Your Child’s Rights IEPs and 504s – video
IEPs: The difference between IEPs and 504 plans – video
How to Get SMART Goals on Your Child’s IEP
Planning for Your Child’s IEP Starts NOW!
Special Education: 25 Power Moves at School – Stronger Every Day podcast
HC&U podcast with Dr. Stephanie Hitti on IEPs and 504s
Understanding IEPs and 504 Plans – Ask the Expert podcast
504/IEP Sickle Cell Disease Seminar Webinar with Elle Cole
A New Kind of IEP (an eye to aging out of school) – Stronger Every Day podcast
Association of University Centers on Disabilities
These checklists originally appeared in the book “Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports ” by Kelley Coleman.
Global Genes 2025 Quick Guide Series is our way to respond to a common need we have heard for more information in the rare community. Think of them as the answer to one frequently asked question or pain point we have heard from our Rare Concierge, our online and in person communities and our Global Advocacy Alliance. Each one is complete with links to additional related resources across various media types, both those that are authored by Global Genes and from outside sources as well.
This series is supported in part by: Amgen, Amicus, Beam Therapeutics, Biocryst, BridgeBio, Chiesi, Mallinckrodt Pharmaceuticals, Merck, and Parexel
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