Sunday, May 1, 2016

When Family Caregivers Need Help Navigating the Systems Helping Their Child

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When trying to get services for their children with special needs, family caregivers may run into roadblocks.  There are organizations that can help for free, but sometimes a paid advocate or even a lawyer is needed. 
When or why would family caregivers need help?
There are various systems that parents have to navigate, including education, healthcare, and family support.  Sometimes all it takes is a phone call to an organization to find out what the system’s responsibilities are and what their child’s rights are.  Basic advocacy can be done by keeping good notes and documenting everything.  Sometimes, families need to send a letter confirming a conversation because otherwise there’s no proof of what was said.  Other times parents may need to send documents by certified/return receipt mail to prove it was received. 
Sometimes parents end up disagreeing with their school district on instructional services, related services like therapies, or placement, from inclusion to resource room, a self-contained class or even out of district school.  There are Parent Training and Information Centers in every state that can offer free technical assistance/parent advising to families (see Resources for links below.)  If parents need more help, they can reach out to their state Protection and Advocacy agency.  Paid advocates and lawyers can be found through the Council of Parent Attorneys and Advocates. 
Health Care
Other times families may be struggling with getting medical equipment or other health care from their insurance company (whether it’s private or through Medicaid.)  Or perhaps they’re trying to apply for SSI (Supplemental Security Income.) Or maybe their child just got a new diagnosis.  There are Family Voices State Affiliates and Family-to-Family Health Information Centers in every state that offer free help to parents.  If the issue is still unresolved, the next step could be to contact free legal help from Disability Rights in each state (sometimes call Protection and Advocacy.) 
Family Support
Lastly some parents are dealing with state offices based on their child’s disability.  Sometimes all they need is to talk to another trained volunteer of a child with the same condition and these can be found through Parent-to-Parent.  In every state, there is also a Governor’s Council on Developmental Disability.  Lastly, for families going through transition to adult life, Centers for Independent Living can help maximize their child’s potential.  For free legal help if needed, Disability Rights in each state would help with these family support systems as well.      
Sometimes family caregivers just need to contact a local non-profit to find out more information.  Other times, parents may need a professional paid advocate or even an attorney.  By advocating for their child with special needs, families can get the services their child needs resulting in better outcomes.  Next month I’ll cover how parents can move from individual to systems advocacy to make positive changes for their family and other families like theirs. 
Parent Training and Information Centers


Council of Parent Attorneys and Advocates (map)


Family Voices/Family-to-Family Health Information Centers
National Disability Rights Network

National Association of Councils on Developmental Disabilities
National Council on Independent Living


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

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)