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

Tuesday, March 1, 2016

Supported Decision-Making Can Benefit Children with Special Needs and Family Caregivers

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Children with special health care needs should have a choice in what happens in their lives, especially as they become adults.  There are things that family caregivers can do to help their child self-advocate and learn how to make good decisions.


The “next generation” of self-determination is Supported Decision-Making.  This means that the individual makes his/her own decisions with the help of a supporter or a support team.  Children with special needs have different capabilities regarding decision-making, but they can make choices with support.  As adults, they should have a say in where they live, work, post-secondary education, etc.  Many family caregivers are advised to use the legal process of guardianship for their child, especially those with developmental or intellectual disabilities.  There is some flexibility in states using limited guardianships, but this still takes away many of the rights of individuals with disabilities.  Using Supported Decision-Making will let people with disabilities make the best choices in their lives, with support.

Alternatives to Guardianship

Advanced Directives

v  This documents choices for end-of-life care and are also called “living wills.”

Healthcare Proxy

v  This document is used for medical decisions.

v  Another person has the control over legal decisions.  Note: a “durable” power-of-attorney can be revoked if the person has temporary incapacity.
Supported Decision- Making Agreements (some states have forms-See Resources)

v  Making decisions with assistance from a support person. 

How This Helps Family Caregivers 

Research has found that self-determination results in better health, independence, community inclusion, and understanding and opposition to potential abuse.[i]  On the other hand, guardianship may “have a “significant negative impact on . . . physical and mental health, longevity, ability to function, and reports of subjective wellbeing.”[ii]   

New initiatives emphasize “person-centered planning” and Supported Decision Making.  Person-centered planning considers the assets and preferences of the individual (See Resources.)  In healthcare, there is a new focus on “shared decision-making.”  Supported Decision-Making will apply to all areas of the person’s life and is thought of as “autonomy with support.”  Children with disabilities should be taught to self-advocate in order to have control over decisions throughout their lives.       

Now there are new options for family caregivers of children with special needs.  This is a personal decision for each family.  Even if the child will never live completely independently, it is essential that children with special needs get opportunities to make choices from an early age.  Children with disabilities should have as much input as they can, based on their abilities.  Supported decision-making follows the belief that “everyone has the right to make choices[iii].”


Alternatives to Guardianship factsheet-

REACH for Transition: Supported Decision-Making & Alternatives to Guardianship

Getting the Community Life You Want: A Guide to Home and Community Based Services Advocacy

National Resource Center for Supported Decision-Making
Person-Centered Planning Tool

Supported Decision-Making Toolkit (including resources on forms)

*This is an edited version of my article in the forthcoming March issue of Exceptional Parent magazine at
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

[i] Ishita Khemka, Linda Hickson, Gillian Reynolds Evaluation of a decision-making curriculum designed to empower women with mental retardation to resist abuse Am J Ment Retard. 2005 May;110(3):193-204.
Michale Wehmeyer, Michelle Schwartz Exceptional Children 1998, Vol. 63, No. 2, pp. 245-255.
Wehmeyer, M. L., Kelchner, K., & Richards, S. (1996). Essential characteristics of self-determined behaviors of adults with mental retardation and developmental disabilities. American Journal on Mental Retardation, 100, 632-642.
[ii] Jennifer L. Wright, Guardianship for Your Own Good:  Improving the Well-Being of Respondents and Wards in the USA, 33 Int’l J.L. & Psychiatry 350 (2010)

Saturday, February 13, 2016

The Warrior

To be a warrior is not a simple matter of wishing to be one. It is rather an endless struggle that will go on to the very last moment of our lives. Nobody is born a warrior, in exactly the same way that nobody is born an average man. We make ourselves into one or the other. — Powerpressive

We don't always get to choose the paths in life that we take.  This picture here is of a good friend.  Like myself, she is a parent to children with multiple and complex needs.  

Growing up I was the quiet kid.  I didn't say much at school.  I was extremely introverted.  I just wanted to live an ordinary everyday life.  Grow up, have a job, get married, find out I was secretly royalty and that my biological family was going to surprise everyone when they came and I was a secret duchess of something.  Hey, even the quiet girls have dreams! 

I did grow up, had a fantastic job, an awesome hubby, and was pretty content to coast on by.   Then my life changed.  

I didn't want to sign up for warrior status.  But when my children came along I found out that nice people can and indeed do finish last.  Not all the time, but a good chunk of it.  

My son wasn't getting what he needed.  I was told over and over again that he was "fine".  I was told this by teachers, some family, and the world at large.  They didn't see the battles and the struggles that we went through day by day.  Something had to change.  Someone had to change.  I had to change.  So I did.  Bit by bit.  

It started out with small changes, pushing back ever so slightly.  The small changes worked and over time I became bolder and bolder.  By the time Cary Lynn joined the family I was on my way to becoming a seasoned warrior.  Over the three years she has been with us I have by and large given up on having a quiet and ordinary life.  My days are filled with advocacy, fighting for needs, pushing against a system that often times works against us. 

Warriors aren't born.  They are made.  They become.  My friend has become a warrior for her children.  Day by day she fights for them.  As do each and every parent of special needs children that I know.  There is not one of us who will stop until our children get what they need.  We have to work much harder at it, but giving up has never been an option.  

There are also side effects of becoming a warrior.  When you make the choice to become one it impacts your family.  My son watches me put on my battle paint and draw my sword for justice.  My daughter hears my voice while I am shouting for equality.  Little by little Marvin and Cary Lynn are starting to pick up their own swords and shields.  I see it day by day.  When my son tells people that he needs a break, that they need to hear his feelings. When my daughter picks up her communication device and says NO NO NO NO NO. When she fights against things that hurt her.  Every day I see proof that I am raising warriors.  

Right now my friend's daughter is in the hospital.  Again.  She had a major colon resection, a J-tube placed, adhesions removed, and a new button placed in her.  I went to the hospital to visit her.  She's in a ton of pain.  But she is also a warrior.  She is fighting hard to recuperate and her strength amazes me.  

As I'm writing this I'm also watching her son and daughter.  They too are becoming warriors. Not because they were so excited about all the fringe benefits they are going to get out of it. But  because their mom is a force to be reckoned with.  Her strong drive and amazing mindset blow me away on a regular basis.  

Her son has changed so much this year.  He's become more expressive, tries to take care of his younger sisters, and has stepped up to the plate time and time again.  Her daughter who sits next to me coloring is the spitting image of her mama.  Her mannerisms  and the way she helps me out with my daughter when she is over show me that some day this little girl is going to take the world by storm.  Our children are reminders and visible benchmarks of the path we have chosen.  

Make no mistake.  We will fight for our children.  We are Warriors.  And I wouldn't have it any other way.  

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Amy Fields is a wife, mother, and advocate.  You can find her at her blog Many Kinds of Families  

Monday, February 1, 2016

How Collaborative & Proactive Solutions Can Help Family Caregivers

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In my last blog I briefly mentioned Ross Greene’s work on Collaborative & Proactive Solutions (formerly Collaborative Problem Solving.)  Find out how to use CPS with your child and how this can help your family as a whole. 

What it is

 Collaborative & Proactive Solutions (CPS) means just that – working together to solve problems.  Parents can partner with their children to prioritize issues to address.  This means that parents get input from the child and the child feels part of the process.  The child can assist in identification of the problem as well as help come up with possible solutions.
                                             Developed by Ross Greene
How it works
CPS is a matter of prioritization.  Even though family caregivers may feel like there are many issues to be addressed, they can’t work on everything at once.  Issues involving safety and health, for example, running out into the street, need to be addressed first.  Steps to using CPS include:
1.       Empathy (plus reassurance)
2.      Define the Problem
3.      Invitation
A simple example (adapted from NAMI Basics-see Resources) could be when the child leaves a mess after eating. 
Step 1 Empathy:
Parent:  “Most times you do clean up and I am very grateful when you do.  I will try harder to mention those times to you.”
Step 2 Define the Problem:
Parent:  “Ok, I understand that sometimes we all forget.  My concern is that we have an ant problem in the house and I worry this will get worse.”
Step 3 Invitation:
Parent:  “What can we do to help you remember to clean up?”
Then brainstorm on possible solutions like putting up a sign, and if the child agrees, problem solved!  Together, discuss all possible solutions and why they will or won’t work. 
Why it works
Dr. Greene believes that “children will do well if they can.”  This means that your child is doing the best s/he can with the skills s/he has.  Sometimes it’s not a matter of compliance, but a skills issue.  This means that the child simply doesn’t have the skills needed yet.  Again, it is important that parents recognize that all behavior is communication and sometimes the only way children can communicate is by acting out.  The overwhelmed or nonverbal child may only be able to cry or scream or run away from a situation that is too much for him/her.  The key is to teach appropriate replacement behaviors and effective communication skills.  By involving the child in working on this together, the child will “buy into” problem solving since s/he will have a choice about what to work on and how to fix it.
CPS will help family caregivers to “pick their battles” and let the rest go until the larger issues are resolved.  For more detailed information, see the one page factsheet at
Ross Greene’s website including books “The Explosive Child” and “Lost at School”

National Alliance on Mental Illness-Basics classes for families

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