Peds YA - Know Your Rights - United Ostomy Associations of America

Know Your Rights

It is important to understand and know your rights or the rights of your child with an ostomy:

You do not have to disclose your medical history or that of your child’s to anyone

You/your child has a right to equal access

You/your child has a right not be discriminated against for you or their medical needs

UOAA’s PATIENT BILL OF RIGHTS

UOAA recognizes that ostomy care for children to young adults should be child and family-centered and should involve communication between all members of the healthcare team. This team includes doctors, nurses, ostomy nurses, child life specialists, nutritionists and social workers.

The goal of UOAA’s Pediatric Ostomy Patient Bill of Rights and Ostomy & Continent Diversion Patient Bill of Rights for adults (see links below) is to define quality ostomy care as the rights to which infants, children, teens and young adults and their families ideally receive when facing ostomy surgery.

The Pediatric Bill of Rights is a tool to empower parents/legal guardians to advocate for their child during all phases of care. The rights listed are meant to ensure a positive patient experience and best outcomes to achieve a desirable quality of life for the infant, child, or teen living with an ostomy and their family. Our Ostomy & Continent Diversion Patient Bill of Rights gives adult ostomates a tool to self-advocate for their own care and improve outcomes.

These rights are in addition to standard (hospital) patient rights and specifically related to having an ostomy.

PEDIATRIC PATIENT BILL OF RIGHTS OSTOMY & CONTINENT DIVERSION PATIENT BILL OF RIGHTS

You can also visit UOAA’s PATIENT BILL OF RIGHTS webpage to watch an animated series created in partnership with Better Health that provides step-by-step guidance on how to utilize the Patient Bill of Rights when interacting with you or your child’s healthcare team. You can also download and print a wallet version of the Patient Bill of Rights in both English and Spanish.

Advocacy

There is no better advocate for you than yourself.
You know how you are feeling better than anyone else.
Don’t be a doormat: Your needs are important, don’t let others convince you otherwise.
Be assertive without being aggressive.
Be Resolute: Your medical needs are not something that can be compromised.
Find Your Voice – 10 Questions to Help You Speak Up

Insurance

Consider all options that you have available when you turn 18.
You can sometimes stay on parents’ insurance until 26.
Have the discussion with your parents to see if this option makes sense based on their insurance offerings.
If you must obtain your own plan, look at co-pays and deductibles for various plan types available to you – specifically how they cover ostomy supplies and
Durable Medical Equipment (DME): If you must obtain your own plan, look at co-pays and deductibles for various plan types available to you – specifically how they cover ostomy supplies and Durable Medical Equipment (DME).
Learn more about how the Affordable Care Act helps young adults
Learn more about healthcare insurance

Miscommunication

Make sure that you communicate your needs clearly.
Get the other party to repeat what you said in their own words so you know that you are on the same page.
To ensure informed medical decision-making, it is important to take notes and if not automatically provided, ask for a written summary of what was discussed in your visit. It is important to know what is in your medical records.

Emergency Supplies

Connect with your local UOAA Support Group chapter.

There may be members who have extra supplies that fit and work with you.
They may have an “Ostomy Pantry” of extra donated supplies.
Learn more through UOAA

Hope, support, and finding community

Parent Stories

These webpages are funded by a grant from Hollister Incorporated.

Contact Us

United Ostomy Associations of America
P.O. Box 2293
Biddeford, ME 04005-2293

Virtual Ostomy Clinic

Contact UOAA

Donate Your Supplies

Call us toll-free at: 1-800-826-0826.
Our Information Line hours are Monday-Friday, 9am to 3pm EST. If you have an emergency, please dial 911 or contact your local medical professional.

Please understand that UOAA is a private, nonprofit, advocacy and informational organization. We are not a medical facility and we do not have medical or legal professionals on staff. Therefore, UOAA does not provide Medical, Mental Health, Insurance or Legal Advice. Visit UOAA Virtual Ostomy Clinic provided by The Wound Company for non-emergency, virtual ostomy support.