Healthcare Transition and Medical Self-Advocacy

When young people turn 18, a lot happens. Adult responsibilities and decisions can feel scary and confusing for the unprepared. Becoming responsible for medical care is part of growing up, and that process is so critical that there’s a specific name for it: healthcare transition.

For example, at age 18 a young adult is responsible to sign official paperwork to authorize procedures or therapies. They must sign documents to say who can look at their medical records, talk to their doctors, or come to an appointment with them. Those rules are part of HIPAA, which stands for the Health Insurance Portability and Accountability Act. HIPAA is a federal law that protects confidentiality, regardless of disability.

In this video, young adults living with various disability and medical conditions talk about their journeys in the adult healthcare system. They talk about how they make decisions and how they ask for help. Their ability to explain their needs, make decisions, and speak up for themselves is called self-advocacy. Take a look and listen to what they have to say in their own words!

For more information and resources around healthcare transition and self-advocacy, follow these links to the Family to Family Health Information website.

Another place for information is the Informing Families website, which includes a section called got transition.

Stay Stubborn! One Girl’s Self-Determination while Navigating Healthcare

By Kyann Flint

Being stubborn is the right approach when it means self-determination. Having the drive to learn what you want and need and then speak up for yourself gives you control over your life. 

I learned that lesson young. By age 6, I was advocating in my own healthcare. My doctor wanted to stick a swab up my nose and down my throat at the same time. I told him, “No!” and asked, “What would that accomplish?” I was not sick. Why put me through that? I had been through enough tests. If this one was not going to improve my pain or give me a diagnosis, then it did not need to happen. Because I spoke up, it didn’t!

My parents supported my growing self-advocacy and also advocated for me. As my voice blossomed, so did my skills for self-determination. The self-determination skills I worked on throughout childhood have helped me gain independence and make some of the most important adult decisions of my life.

When I was 8, I was diagnosed with a type of genetic peripheral neuropathy called Charcot Marie Tooth (CMT). The coating around my nerves becomes scarred and cannot be repaired, making it hard for my brain to tell my legs, arms, feet, and hands what to do.

I continued to have symptoms that did not quite fit this diagnosis, so testing continued. By age 12, I started asking whether further diagnoses would improve my quality of life. The answer was no, so I chose to end the poking and prodding and deal with my symptoms as they came.

Right after I turned 21, I was in tremendous pain and needed more help. Three years later, I had a second diagnosis: Heredity Spastic Paraplegia. Four years after that, the cause of my pain was finally found. My bladder was failing, which made it difficult to go to the bathroom. I eventually lost the ability to go to the bathroom on my own. On September 30, 2020, I made one of the best decisions of my life and had the Mitrofanoff surgery that now allows me to go to the bathroom independently.

I needed a lot of self-determination to get to this point. Before the surgery, one doctor advised against it, explaining that I wasn’t a good candidate due to my progressive neuromuscular disorders. She predicted that I would be incapacitated one day, so “why bother?” I decided that even if she were right, I wanted the independence that the surgery could provide now. I found a new surgeon. I am so thankful that I did!

My surgeon related well with me and supported my belief that I was “worthy” of this procedure. He agreed that it was a good choice to enable me to live more independently right now. The choice to proceed wasn’t easy or pain-free. I needed many tests and procedures, including a colonoscopy without anesthesia. Delays in scheduling the surgery tested my self-determination, but I persevered.

My surgery included a week in the hospital and months of recovery, but my stubborn nature helped me get through it all, despite the frustration of having limited manual dexterity and being legally blind. But I figured out how to go to the bathroom independently!

It took a lot of self-determination to move forward with one of the best decisions of my life, but I am proud that I made this decision. If you have a decision to make in your life, I hope you will tap into your own stubborn self-determination. Figure out what you need and want and speak up for yourself. I’m so glad I did.

About the author: Kyann Flint, Director of Accessibility for Wandke Consulting, is a passionate advocate for the disability community. As a person with a disability, she strives to educate society on how social barriers, like ignorance and stereotypes, limit the disability community. Kyann loves coffee and traveling.

Get Ready for Summer with Camp Planning

Planning summer camp for children with special needs requires a bit of extra thinking and planning. Your initial questions might feel fear-based:

  • Will the camp be accessible enough?
  • Will she be safe?
  • Will they care for him? 
  • Will the kids be nice?
  • Is she ready? Am I ready? 

Getting organized can alleviate your fears and help set your child up for a safe and fun summer experience. These broad-based questions can help narrow your search:  

  • Would your family prefer a day or an overnight camp?
  • Given your child’s unique circumstances, would it make sense to arrange special supports in a camp designed for all children?
  • Would an inclusive camp with a caregiver be the best fit? 

A guide to help you seek answers to these and other questions is The Center for Children with Special Needs Summer Camp Directory, which lists camps designed to meet unique medical, social and emotional needs. This directory lists overnight camps and week-long adaptive day camps.   

Here are some additional tips for getting ready:

Talk About Camp Early and Often

Make this a family project. Discuss the possible activities with your child, look at pictures and call the people at places that sounded interesting. Focus on what sounds fun and what it might mean to make new friends and share adventures. Invite your child to talk about what might feel scary—and that feeling jittery or homesick is a normal part of going to camp for all children who are new to the experience.

Practice makes perfect

Many camps have open houses or visiting times so a child can look around and begin to get comfortable with the environment. Have staff show you around and talk about the schedule so your child can feel prepared and know what to expect.

Safety First

Help your child talk about self-care routines. Your child can practice asking for something he or she might need, and you can talk about who the helpers will be. This is great practice in the life skills of self-determination and self-advocacy! Your child can also help you write down special instructions for the camp staff. Talk openly to the camp director, and document allergies and things to avoid. Ask whether a specific staff person can be assigned to your child so that person can receive training directly from you. Make sure to include specifics about your child’s unique needs (e.g.: He tends to have a tantrum if you ask him to rush; she walks in her sleep; or he needs a calming spot, a hideaway or a swing.) Help the staff feel prepared to help your child succeed, relax and have fun!

Make sure to talk with your child about privacy, safe touch, and respecting one’s body. Ask the camp what they have in place to ensure safety.

Check in With Your Child’s Doctor

You can schedule a medical appointment to talk about do’s and don’ts at camp. For example, DO go swimming and have a great time, but DON’T jump from high places into the water if a medical condition like brittle bones makes this dangerous. At the appointment, you can request additional dosages or back-up medications as needed. If your child has serious health concerns, a camp with nurses or doctors trained in your child’s specific condition may be necessary. You or a paid caregiver also might be able to visit during lunch or another time of day to provide needed medical supports, and this can be discussed with your provider during this pre-camp medical check-up. Be sure that everyone involved knows what is expected and who is responsible for which aspects of your child’s care.  

Don’t forget to include sunscreen, lots of water, and a hat for summertime heat. Take note if your child is taking a medication that might increase heat sensitivity.

Make a List and Check it THRICE!

Many camps provide detailed packing lists, but your family’s list will include specific items for your child’s individual comfort or unique circumstances. Medications, emergency changes of clothes, pads, or other medical supplies need to be written down to make sure they make it to camp!

Zip-closure baggies labeled with a Sharpie pen might help you get organized. You can write instructions on index cards inside the baggies. A Care Planner can help, with a medical release, copies of medical cards and instructions about where to take your child in an emergency.  Here are some resources to help you create a Care Planner:

Organize Your Child’s Medical and School Documents with a Care Notebook
Familyvoices.org
Seattle Children’s Hospital Center for Children with Special Needs
National Center for Medical Home Implementation

Enjoy Your Me Time

Wish your child an excellent adventure, and don’t forget to treat yourself to some self-care time while your super special child is away at camp!