Friday, April 1, 2016

How Family Caregivers can Teach their Child with Special Needs to Self-advocate in Health Care

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Last month I covered Supported Decision-Making in general.  One of the most difficult areas for children with disabilities to navigate is health care.  Many times doctors will continue to speak to parents, rather than the teen or young adult assuming that they may be unable to respond accurately to questions.  Find out how families can help their child self-advocate in the medical arena. 

Medical Appointments

Scheduling an appointment could be one of the easiest steps to take.  It is best to schedule a follow-up appointment while still at the provider’s office.  The parent could use a calendar (either hard copy or perhaps an app. on their phone) so the child can see which other activities are booked to avoid scheduling conflicts.

Participating in appointments can be started early.  Most children can answer the initial questions on their name and date of birth though some may need to practice this at home first.  They can also answer questions on symptoms, especially the typical yes/no questions like, “Have you had any headaches?  Upset stomach?,” etc.  Family Voices WI has factsheets on preparing children for doctor’s appointments at or Spanish  As they get older, children can practice filling out forms. 

For children seeing multiple providers, it’s good to review at home the doctor’s name, specialty, and why they need to be seen.  A brief list of questions prepared ahead of time also helps appointments run more smoothly. 


Medication adherence is the single largest factor in preventing rehospitalization.  Medication alarms are available, and so are apps. for phones and tablets.  Children may be able to use a pill organizer with supervision along with a medication schedule.  A great online tool as well as app. is  The schedule includes a picture of the medication, what it’s used for, and how much to take at what time.  It has a list for refilling the pill organizer too.

Another thing that older children can learn to do is call for refills.  They should be taught to look for when the bottle is almost empty and how to call the pharmacy-most have automated systems that are easy to use by just keying in the refill number.

It is important that families, and children, learn that they should ask for any interactions among medications.  This means that certain meds may have to be taken separately from others.


Medical Information

This is one of the most difficult items to navigate but again it helps if older children know why they’re seeing a specific doctor.  They should know to share the information related to that condition.  Again, they can start by answering simple questions by practicing at home and will learn how to answer harder questions as they get older. 

It’s a good idea to sign up for the doctor’s patient portal, if there is one.  Here, all of the health information for that provider will be located in one place.  It’s also a good idea to go over the after visit summary with the child to the best of their ability.

Children with complex needs should get medical id bracelets.  There are all sorts of trendy designs out now so children won’t feel like it stands out.

Sometimes it helps to make a separate paper or email list for:

  •  medications
  • medical conditions
  • providers
  • hospitalizations/surgeries

Organizing Health Information by Age:

Families/Young Children
The American Academy of Pediatrics has a “Build Your Own Care” Notebook for families at  Family Voices of NC also has a care notebook in English

A special resource for children who are hospitalized who want to express preferences:
“My Health Passport is available” developed by AUCD South Florida, in available in English at and Spanish at

                                                    Photo AUCD S. Florida

Seattle Children’s Hospital has developed Care Plans for Teens at 

Finally, self-advocates can use the Waisman Center’s “My Health Pocket Guide” at  There is also “My Health, My Choice, My Responsibility” which includes forms for health information, health plans, and appointments at as well as an iPad app. at  The Boggs Center has “Being a Healthy Adult:  How to Advocate for your Health and Health Care” in English at and Spanish at
                                                               Photo Boggs Center


Health care coverage is probably the most complex thing to learn.  Families can teach their child first to make sure they bring their card to each visit.  When they’re older, parents can teach them how to match up the bills with the explanation of benefits.  It’s particularly difficult if there is more than one insurance company for medical or other coverage.  Family Voices NH has tools on all of these topics to help children speak up for themselves regarding healthcare (see Resources.)


Learning how to self-advocate in health care is an essential step towards independence.  Children with special health care needs must start this process early which will result in better outcomes for their health as well as increasing independent living skills.

Take Control of Your Health-
factsheets for youth on appointments, medications, health information, and insurance

                                                          Photo Family Voices NH

Remain Hopeful,


Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (, a national network that works to “keep families at the center of children’s healthcare” at or FB  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at or FB