Back to School for EDS Children in K-12 through College: Disability Accommodations, Medical Rights, and Protection from Harm

When I was growing up back to school specials meant a cool cartoon or movie on the one channel TV like Schoolhouse Rock. Today it is much more serious and required for parents to keep their kids safe. If you are a student or a parent of a child who needs extra support for their illness and/or disability accommodations for school or to enter and succeed in grammar school up to college, this is for you and just in time.

For Students K-12

• Read the EDS Awareness resourceful article for K-12 parents of kids with EDS

• Ask your student to read our  article written by students with their tips on navigating school with EDS.

Need to Know Rights and Terminology:

• Learn your rights from the ADA Act in the US

• Know the terms of IEPs and special ed terms

• Understand the differences between IDEA and Section 504

Ideas for Accommodations: 

• From the Parent Center Hub and 22 more ideas for school accommodations

• If your student is a rising senior see these tactics to get ready for college during high school with disabilities.

Sample letters:

○          Sample Accommodations Letter from Your Doctor/Clinician - Template - Google Docs

○          Sample Accommodations Letter Request for Professor -Template - Google Docs

Parents’ Tools:

• Review the recent medical research report on the lived experiences of parents of EDS children

• Be sure to learn to navigate pediatric to adult care in rare diseases

• Save money pre-tax with a US government ABLE disability savings account for kids under 26 

More Resources:

• Accommodations on College Board Exams from the College Board

• Association on Higher Education And Disability (AHEAD)

• Higher Education — Generation Patient

• Postsecondary Institutions and Students with Disabilities from the ADA National Network

• Disability Rights Legal Center (DRLC) - Free disability-related legal advice

• Benefits.gov   
  

Be Prepared to Help Your Older Kids in a Medical Emergency

Unless you have 2 legal documents signed by your child, medical providers must treat you like a stranger – that’s the law.   Did you know that your college "kid" is considered an independent adult when it comes to medical care? At age 18, everyone becomes responsible for their own medical decisions as an adult, unless they give consent for others to be informed or involved in their care. Verbal consent works.  But what if your adult child is unconscious or compromised in some other way – and faced with a decision about surgery and medical treatments? Even in an emergency, doctors and nurses can’t share health care information with you.  A worst-case scenario for everyone. Think about your older kids, too! Even after your they are "officially launched" in jobs and careers, your family may want peace of mind that you can be there for each other during medical care, no matter what.  

For everyone's peace of mind... 

• Download Medical Power of Attorney and HIPAA Release forms from any reputable source for the state where your adult child goes to school or lives. These sources are free, generally at state government sites.  Make copies of these forms for everyone, including the health center at school and your child's doctors. If your child has an electronic medical record, upload the completed forms there, too. (By the way, be sure to have all login info for their patient portals!) 

• Make sure you and your child have ICE (In Case of Emergency) settings on your phones, make sure that all of those listed have copies, as well. Always include any important notes to first responders like allergies, reactions, medication resistance, etc. 

• Take pictures of the completed forms and store digital copies on your phones. (Be sure the signature pages are clear!) They will always be at your fingertips which can be critical in a crisis. 
  

Hopefully when you have all these items in order, your sense of ease about your child going back to school at any age will be more safe and secure after preparation. And let's hope you never need them!

Taking Care of Your EDS Kid, Not Just Maya Protect Your Kids from Authority Abuse Allegations If They’re Frequently Injured or Bruised from EDS and Other Illnesses

Parents of children with invisible illnesses, such as EDS and other chronic pain or fatigue-related conditions, mental health issues, or autoimmune disorders, or neurodivergent differences can face unique challenges. These illnesses might not be immediately visible to others, sometimes leading to misunderstandings or misinterpretations regarding the child's health and the parents' caregiving. I hate that this is a topic we need to talk about, but it is reality for too many families. The issue was recently showcased in the Netflix series, Taking Care of Maya about a sick child being removed from her family by doctors believing she was being abused. This is a very complex arena, and one no one talks about, but parents need information to be better prepared for the tragedy. Here are a few tips to protect your family and ensure the best care for your child, parents can consider the following strategies:

• Documentation and Medical Records: Keep thorough and up-to-date medical records for your child. This includes doctor's notes, diagnoses, treatment plans, and medication records. Consistent documentation is key in demonstrating the history and legitimacy of the child's condition.

• Establish a Strong Relationship with Healthcare Providers: Develop a good working relationship with your child's doctors and specialists. Their support and understanding of your child’s condition can be invaluable, especially if questions about your child's care arise from others.

• Educate Yourself Thoroughly: Understanding your child's condition in depth will empower you to make informed decisions about their care and to advocate effectively on their behalf.

• Communication with Schools and Other Institutions: Communicate proactively with schools, daycare centers, and other relevant institutions about your child's condition. Providing them with information and guidance on how to support your child can help in creating a supportive environment.

• Build a Support Network: Connect with support groups, either locally or online, for parents of children with similar conditions. These networks can provide emotional support, advice, and practical tips based on shared experiences.

• Know Your Rights: Familiarize yourself with the legal rights pertaining to your child’s condition and or special needs or accommodations, especially regarding education and healthcare. In some regions, this may include rights under disability legislation.

• Plan for Emergencies: Have a clear plan for emergencies, including who to contact and what steps to take if your child’s health rapidly deteriorates or if there are legal inquiries regarding your child's wellbeing. Having an easily assessable well documented plan with emergency contacts included is a must for unpredictable circumstances to recruit help.

• Seek Legal Advice if Necessary: If you face challenges related to your child’s care, such as disputes with schools or misunderstandings with child protective services, don’t hesitate to seek legal advice. Resources are available with TCAPP.org

• Open Dialogue with Family and Friends: Educate your immediate social circle about your child’s condition and any warnings signs to monitor. Having a supportive family and friend group can provide both practical and emotional support.

• Self-Care for Parents: Taking care of a child with an invisible illness can be demanding. Remember to look after your own health and well-being, as it is crucial for both you and your child.

In the Best Interest of the Child In any situation, especially in legal contexts, the child's best interest is a primary consideration. This can sometimes lead to conflicts between what a parent feels is best and what authorities or courts determine. State laws play a crucial role in defining and protecting these rights. For example, in cases of suspected child abuse or neglect, child protective services may investigate and make decisions that could override certain parental rights for the child's safety. For more information or guidance in this area, learn more from The Coalition Against Pediatric Pain (TCAPP) nonprofit or the Do No Harm project at www.donoharm.com.