Advocacy and Disability Issues
The section on Advocacy and Disability Issues includes
articles about disability rights, advocating for medical or human
services, and political legislation related to disability and
children's health. Articles on the disabilities themselves, therapies, and augmentative communication can be found on the Developmental, Orthopedic, Neuromuscular, and Neurological Disorders page.
Disability Rights
Healthcare Advocacy
General Disability
Politics
Disability Rights
- Lessons from the Past: Fighting for the Civil Rights of Children with Disabilities
- Belonging: Introducing Kids to Disability Culture
- Improving Attitudes of Medical Professionals Toward Children with Neurological Impairments
- The Right to Communicate
- What Truly Makes a Child Special...And Not Extra Special
- Selective Abortion of Fetuses with Non-Fatal Disabilities: Progress or Discrimination?
- The Magnificence of Disability
- Graduating High School: Schools Forcing Out Teens with Special Needs
- 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?
- Finding Primary Pediatric Care for Your Child with Complex Medical Needs or a Disability
- 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
- Advocating for Your Child While Inpatient
- Getting the Most from Your Insurance
- You Are Your Kid's Voice: A Parent's Guide to Advocating
- Saving Your Sanity through Respite Care
- The Wheelchair Runaround: Oh, the Bitter Irony
- To Sign or Not to Sign: What to Look for in Medical Release Forms
Advocacy for Specific Conditions
- The Crisis in Pain Control for Children who are Complex, Non-Verbal, or Cognitively Impaired
- A Victory for Children Who Cath
- Vaccinating Children with Neurological, Metabolic, and Neuromuscular Issues: A Call for Research
- Genetic Testing in Children: Navigating the System
- Why You (and Your Insurance Company) Need to Get Your Child Standing
- Choosing Clothing for Children with Special Needs
- Car Seats for Children with Special Needs
- Adult Diagnosis of Asperger's Syndrome
- Not Knowing: Thoughts on Being Undiagnosed
- Life After Mito
- Unusual Presentations of Mitochondrial Disease
- Teens and Mitochondrial Disease
- Exchanging Special Needs Equipment and Supplies
- Achieving Independent Mobility Regardless of Disability
- Patent Law and Children with Genetic Mutations
- Quality of Life: Tubes, Lines, and Other Attachments
- Understanding What It Means to Have a Child Who Has Combined Hearing and Visual Impairments
- Up with Down Syndrome
Accessibility
- A Truly Accessible Bathroom
- Playgrounds for All
- Universal Design: Accessibility for AllUniversal Design: Accessibility for All
- An Insider's Guide to Morgan's Wonderland: A Park for Kids with Special Needs
- Funding Sources for Home Modification
- Universal Design: Accessibility for All
- Bedroom, Bathroom, and Ramp Project
- Deck and Lift Project
- Deck and Ramp Project
- Bedroom, Bathroom, Nurse's Area and Multisensory Area Project
- How to Bathe Your Kid with Medical Issues
Words and Labels
- Words Matter
- Sticks and Stones May Break My Bones But Words Will Devastate Me!
- The Problem with Labels
- Surviving a Friend's R-Bombs
- Learning to Live with Labels
- You Don't Have to Yell: Handling Inappropriate Comments
Awareness
- Congenital Heart Defect Awareness
- Starting a Nonprofit Organization: The Example of SWAN
- The Global Genes Project: All Kids Deserve to Have Hope for a Cure!
- Autism Research: Simons Simplex Collection Project
- Feeding Tube Awareness Week
- Raising Awareness: The Example of Breath of Hope
- It Starts with Awareness
General Disability
- Looking Normal (life with a wheelchair)
- Being a Teenager with Cerebral Palsy
- Sharmiki's Story (cerebral palsy)
- Lessons Learned...Lives Changed
- The Perfect Child: On the Path to Acceptance
- Coping with Neurological Impairment
- Acceptance is a Rollercoaster
- Coping Lessons from a Reed
- Caregiving: 12 Years of Lessons We've Learned
- Using Children's Books to Support Siblings
- The Blessings of Fostering Children with Medical Needs
Politics
- Health Care Reforms in Effect that Impact Children who are Medically Complex
- Presidential Candidate Fact Sheet
- Obama and McCain on Disability
- Obama and McCain on Healthcare
- Obama and McCain on Special Education