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 http://parentsreachingout.org/cd/pdfs_en/hc003.pdf
or Spanish http://parentsreachingout.org/cd/pdfs_es/hc003_es.pdf. 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.
Medications
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 www.mymedschedule.com. 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.
Photo
mymedschedule.com
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 https://medicalhomeinfo.aap.org/tools-resources/Pages/For-Families.aspx. Family Voices of NC also has a care notebook
in English http://ecac-parentcenter.org/userfiles/F2F/Care%20Notebook%20FINAL%20ss%2012.1.09.pdf
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 http://www.spannj.org/cyshcn/core_outcome_6/Health_Passport_English.pdf
and Spanish at http://www.spannj.org/cyshcn/core_outcome_6/Health_Passport_Spanish.pdf.
Photo
AUCD S. Florida
Teens
Seattle Children’s Hospital has developed Care Plans for
Teens at http://cshcn.org/planning-record-keeping/care-plans-for-teens/.
Self-Advocates
Finally, self-advocates can use the Waisman Center’s “My
Health Pocket Guide” at http://www.waisman.wisc.edu/cedd/pdfs/products/health/PG.pdf. There is also “My Health, My Choice, My
Responsibility” which includes forms for health information, health plans, and
appointments at http://www.ablelinktech.com/myhealth/ as well as an iPad app. at http://www.ngsd.org/news/my-health-my-choice-my-responsibility-ipad-app.
The Boggs Center has “Being a Healthy Adult: How to Advocate for your Health and Health
Care” in English at http://www.spanadvocacy.org/content/being-healthy-adult-advocating-your-health-and-health-care
and Spanish at http://www.spanadvocacy.org/sites/g/files/g524681/f/files/TransitiontoAdultHealthcare-SP-complete_0.pdf.
Photo
Boggs Center
Insurance
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.)
Summary
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.
Resources:
Take Control of Your Health-
factsheets for youth on
appointments, medications, health information, and insurance
Photo Family Voices NH
Remain Hopeful,
Lauren
Lauren Agoratus is a parent/advocate who works for the
Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family
Voices (www.spanadvocacy.org), a national network that works to
“keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269. 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 http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.