This section contains articles on advocacy, forming advocacy organizations, and awareness, including awareness of specific medical devices or conditions.
General Advocacy
- Disability Positions of Primary Candidates for President (2020)
- The Illusion of Inclusion: No (Typical) Child Left Behind
- Together We Can Make the World More Accessible for All
- Toileting Children with Disabilities in Public
- My Declaration as a Medical Special Needs Parent
- Beyond the R Word
- Spread the Word to End the Word
- Advocacy Through Disability Rights Lawsuits
- Top 5 Myths About Medicaid and Kids with Disabilities
- The Nora Project: Teaching Empathy by Sparking Friendships
- Advocating with Legislators for Parents of Kids Who are Medically Complex
- Fixing Healthcare: Working Together
- Finding My Voice by Using It
- How My Son Lost His Childhood and What I Did About It
- Tell Me That I Matter: Why Accessible Bathrooms Are So Important
- When Something Isn’t Accessible
- Disability Positions of the 2016 Presidential Candidates
- “Those Parents”
- 10 Tips for Becoming Your Child’s Most Powerful Advocate
- Organizing for Advocacy in Special Education
- 8 Information Strategies for Parents and Caregivers of Children who are Medically Complex
- Home Nursing Care: Who Should Get It, and How Much? An Analysis of State-by-State Diversity
- How to Appeal an Insurance Denial: 9 Steps to Success
- “At Least It Isn’t Cancer!”
- Disability Issues: Where Do the Candidates Stand?
- Programs for Children with Special Health Care Needs: Another Funding Option through Title V
- Kids’ Waivers: A Website on Children’s Medicaid Waivers
- EPSDT: 5 Little Letters to Get Everything Your Child Need
- Taking the “Us Versus Them” Out of Advocacy
- Learning to Advocate
- Promoting Change in Health Care through Advocacy: Will You Answer the Call and “Be the Change?”
- Education Advocacy: How to Come Out on Top at Your Next Tough IEP Meeting
- Partnering with Your Child’s Primary Care Doctor
- Special Kids, Special Risks: Violent Crime and What Parents Need to Know
- Guaranteed Medicaid for Children with Complex Medical Needs
- Our Broken System
- How to Take on Your State in 10 Easy Steps
- Fighting the New York State Medicaid Red Tape
- The Problem with Medicaid Block Grants for Children with Complex Medical Needs
- Solving Your Special Education Nightmare: How to Get Free Advocacy and Legal Help
- Transition: Planning for the Future
- Empowering Your Child
- What is Olmstead? Protecting Children from Being Forced into Institutions
- You Are Your Kid’s Voice: A Parent’s Guide to Advocating
- It Starts with Awareness
- Advocating for Your Child While Inpatient
Advocacy for Specific Conditions, Treatments, or Technologies
- Global Tracheostomy Tube Awareness Week
- Book Review: The Able Life Of Cody Jane: Still Celebrating by Marly Cornell
- Book Review: Tasting Life: A Story of Courage, Strength, Humor and Love in the Face of a Chronic Illness by Inalee Koonin
- The Pediatric Medical Marijuana Movement
- A Resource Guide for Enteral Formula Coverage
- Celebrating Feeding Tube Awareness Week: For the Love of a Tubie
- Why Awareness of Tube Feeding Matters
- Positive Tube Identity
- FPIES: The Formation of a Foundation
- Rare Disease Day
- Turning on Hearing: Thoughts on a Cochlear Implant
- Personal Advocacy Channeled Outward: The Cute Syndrome Foundation
- Two Siblings Born With Isovaleric Acidemia: One Caught by Newborn Screening, One Wasn’t
- New York State of (Nursing) Mind
- How to Increase Your Child’s Medicaid Private Duty Nursing Hours
- Williams Syndrome: Creating a Family of Hope
- Global Tracheostomy Tube Awareness Week
- Life on a Tether: Why Can’t Kids Get Portable Oxygen Concentrators?
- My Son Thomas is Blind: Our Journey of Understanding, Acceptance and Advocacy
- It Starts with Awareness
- Raising Awareness: The Example of Breath of Hope
Articles from the Archives
These articles from the archives have not yet been moved over from the old website. They will open in a new window.
- Why Are So Many Home Health Companies Incompetent? How Negligent Practices Impact Our Children
- Healthcare for Children is a Right
- Working Together for Change: Addressing Nursing Reimbursement
- Medicaid Waivers Must Be Transferable from State to State
- When No One Is Listening: Advocating Successfully with Your Child’s Medical Team
- Avoiding Erroneous Munchausen Syndrome By Proxy Allegations
- Health Care Reforms in Effect that Impact Children who are Medically Complex
- Should Children with Severe Neurological Issues Be on Monitors During Sleep?
- Federal and State Assistance Programs for Children with Special Needs
- Getting Paid to Care for Your Child
- Medical Food Coverage and Legislation
- The Importance of Respite
- The Hidden Financial Costs of Having a Child with Special Needs, Part 2: The Solutions
- Mismanagement of Care Leads to Heartache
- A Victory for Children Who Cath
- Vaccinating Children with Neurological, Metabolic, and Neuromuscular Issues: A Call for Research
- Patent Law and Children with Genetic Mutations
- Congenital Heart Defect Awareness
- Starting a Nonprofit Organization: The Example of SWAN
- Feeding Tube Awareness Week