Tips to Organize Your Child’s Medical and School Documents

Care planning and a well-organized system to keep track of important documents can save time and create comfort during uncertain times. This article provides some tips for building a “care notebook,” which might be a three-ring binder, an accordion file, or a portable file box—whatever makes sense for your organizational style and the types of materials you need to sort.

A portable Care Notebook can include the most current versions of medical or school documents, while older files can be archived separately. Here are some examples of formal documents you might organize:

  • Medical paperwork: diagnoses, assessments, surgeries, medications, provider contacts
  • School paperwork:  Individualized Education Program (IEP), Section 504 Plan, assessments, meeting notifications, progress notes, correspondence, telephone logs
  • Personal care notes: hygiene routines and concerns, food preferences and issues, sleep schedules and challenges
  • Community access: transportation needs, hobbies, clubs, activities

Consider what else to include, such as business cards and contacts, a call log, a calendar, emergency/crisis instructions, prescription information, history, school schedule…

Each primary category can be a section of a large notebook or its own notebook. Consider how portable the notebook needs to be and where you might take it or share it. Will the size and shape be practical for where you plan to go? Do you need more than one notebook or system?

Keep emergency information handy and easy to clean

A small “on the go” handout might be helpful for critical care appointments or emergencies. A laminated handout or a page tucked into a protective sleeve will be easier than a large notebook to disinfect after being in public. Depending on a child’s needs, caregivers might create multiple copies or versions of an on-the-go handout for easy sharing with daycare providers, school staff, babysitters, the emergency room, camp counselors or others who support children.

Key information for a quick look could include:

  • medications and dosages
  • doctors and contact information
  • emergency contacts—and whom to call first
  • allergy information
  • preferred calming measures

Plan for a caregiver’s illness

Another pull-out page or small notebook might include specific instructions about what to do if a caregiver gets sick. These questions could be addressed:

  • Who is the next designated caregiver?
  • Where can the child live?
  • What are specific daily care needs and medical care plans?
  • Is there a guardianship or a medical power of attorney?
  • Are there any financial or long-term plans that need sharing?

Step-by-Step Instructions

Building a Care Notebook does not have to be daunting. Most people start small and try different approaches until they find the best fit.  Here are a few ideas to start the process:

  • Choose a holding system that makes sense for your organizational style: notebook, accordion file, small file box, or a primarily digital system with limited “to-go” handouts.
  • Identify and label the document sections by choosing tools that fit your system: dividers, clear plastic document protectors, written or picture tabs, color coding, card holders for professional contacts, a hierarchy of folders on your computer…
  • Include an easy-to-access calendar section for tracking appointments.
  • Include a call log, where names are recorded (take time to spell full names correctly!) and phone numbers of professionals. Take notes to create a written record of a conversation. It is also practical to send a “reflective email” to clarify information shared in a call, then print the email, and tape it into the call log to create a more formal written record of the call.
  • A separate sheet of easy-reference information can be used to share with a caregiver in a new situation, such as daycare, doctor, camp, or a sleepover. Mommies of Miracles has an All About Me template that serves this purpose.
  • When appropriate, invite the child to participate.
  • Use technology: Dr. Hempel Digital Network provides 10 health-record applications with four options that combine electronic medical records with telehealth capabilities. Other applications work with cellular phones. Here are three: MTBC PHR, Medical Records, and Medfusion Plus.

Tools to help you begin

Quick and easy forms can help you start. Here are two options:

  1. Portable Medical Summary from Seattle Children’s Hospital
  2. What’s the Plan from the Washington Department of Health

Guidance to help you build a more comprehensive care notebook is available from Family Voices of Washington. Printable forms can be done in stages and updated as needed to slide into a notebook or filing system. The templates include pull-out pages for Emergency Room or Urgent Care visits and forms to help organize medical appointments.

A child’s medical providers might help write a care plan and can provide specific contact information, medication lists and emergency contact procedures for each office. A school can provide copies of an Individualized Education Program (IEP), a Section 504 Plan, an Emergency Response Protocol, a Behavior Intervention Plan or other documents. If a child is in state-supported daycare (on location or in-home), staff can provide forms for emergency procedures and contacts.

You will thank yourself in the future!

Having information organized and ready can make it easier to apply for public services through the Social Security Administration, the Developmental Disabilities Administration (DDA), the Division of Vocational Rehabilitation (DVR) or others. For military families, a Care Notebook can make transitions and frequent moves easier to manage.

A well-established organization system also can help a child transition toward adult life. Easy access to a list of accommodations can ease that first meeting with a college special services office or provide a key set of documents for requesting employment supports through DVR. Easy access to key medical records can be the first step to helping a child learn what medications they are taking and advocate for an adjustment with an adult provider

Additional resources for long-term planning include:

Technology Provides Options for Medical Care from a Distance

A Brief Overview

  • During the coronavirus pandemic and statewide stay-home orders, some providers are offering online appointments. This article includes information about access to telehealth and how to prepare for a virtual visit.
  • Federal privacy laws have been relaxed during the shutdown to allow more opportunities for on-screen healthcare. Washington’s telemedicine parity law was updated by the 2015 legislature. Those updates went into effect in 2017 (SSB 5175).
  • Generally, military families with TRICARE and families with state insurance, Apple Health, have coverage for medically necessary services provided through telemedicine.
  • A 6-minute video tutorial from the Hawaii Department of Health provides information about what to expect during a telehealth session.
  • Washington’s Department of Social and Health Services (DSHS) is providing free cell phones and minutes to low-income families through a federal program called Lifeline. State-specific information about this option is available from the Health Care Authority.
  • See Links to Support Families during the Coronavirus Crisis for additional resources.

Full Article

Families staying home during the coronavirus pandemic need new ways to access medical care. Onscreen appointments—telehealth, telemedicine, teleintervention, telepsychiatry—meet some needs.

The U.S. Department of Health and Human Services (hhs.gov) in early March 2020 relaxed legal requirements related to confidentiality in order to support the delivery of telehealth services while families shelter in place. Roger Severino, director of the Office for Civil Rights (OCR), issued the following statement: “We are empowering medical providers to serve patients wherever they are during this national public health emergency. We are especially concerned about reaching those most at risk, including older persons and persons with disabilities.”

The federal guidance refers to confidentiality rules under the Health Insurance Portability and Accountability Act of 1996 (HIPAA). The HHS website states that OCR will use discretion and relax compliance under HIPAA if services are delivered in good faith:

“During the COVID-19 national emergency, which also constitutes a nationwide public health emergency, covered health care providers subject to the HIPAA Rules may seek to communicate with patients, and provide telehealth services, through remote communications technologies.  Some of these technologies, and the manner in which they are used by HIPAA-covered health care providers, may not fully comply with the requirements of the HIPAA Rules.”

Washington State has grown telehealth since 2015

Even before social distancing requirements, virtual appointments for diagnoses and treatments that don’t require direct physical examination have gained popularity. Before COVID-19 took hold, Washington’s 2020 legislature passed HB 2728 to support further development of children’s behavioral health services delivered through telemedicine.

In order to meet needs in some rural communities and underserved fields, such as psychiatry, Washington’s telemedicine parity law was updated by the 2015 legislature. Those updates went into effect in 2017 (SSB 5175).

The law enables providers to seek reimbursement for most services provided virtually if those same services would be covered by insurance if they were delivered in person. The law defines telemedicine as “the delivery of health care services through the use of interactive audio and video technology, permitting real-time communication between the patient at the originating site and the provider, for the purpose of diagnosis, consultation, or treatment.”

Telephone (“audio only”) services or provider guidance by facsimile (FAX) or email may not be covered. Families can check with their insurance carrier to make sure an appointment would be covered if video could fail during the appointment or is unavailable because of a technology complication.

Generally, telemedicine is covered by insurance if:

  • The payor would cover the service if it was provided in-person, and the service can reasonably be provided without direct contact.
  • The health care service is medically necessary.
  • The service is recognized as an essential health benefit under the federal Patient Protection and Affordable Care Act

Individual providers create their own policies about whether they provide services electronically, and the parity law doesn’t guarantee equal reimbursement. Washington is part of the Interstate Medical Licensure Compact, making it easier for providers to get licensed in multiple states and provide services to a broader clientele, including through telemedicine.

Families with Medicaid in Washington State, which is called Apple Health, can find information related to telehealth from the Health Care Authority. In keeping with federal guidance, Medicaid in general is reimbursing telehealth services at the same rate they would reimburse in-person services during the pandemic.

TRICARE expands options for military families, including ABA

TRICARE provides coverage for medically necessary telemedicine visits from providers who offer that service. Preventive health screenings, psychiatric care and medication consultations are examples of appointments that are most easily held virtually. Depending on the TRICARE plan, an authorization or referral may be needed.

In addition, TRICARE is extending telehealth for families who access Applied Behavior Analysis (ABA) and are enrolled in the Autism Care Demonstration (ACD) March 31- May 31, 2020. This temporary extension includes ABA support to parents/caregivers, and the services don’t require the child to be present at the telehealth appointment.

How do I prepare for a telemedicine appointment?

Before services are rendered, providers are required to seek informed consent from patients and/or legal guardians and to provide information about how the technology works and how privacy is protected. Electronic signatures are generally acceptable, particularly as the state requires social distancing. The Washington State Department of Social and Health Services (DSHS) provides a downloadable guidebook about telehealth

Prepare for a routine check-up like you would if you were visiting the clinic: Write down questions and concerns, including any changes related to health or medication. A visual tutorial, created by the Department of Health in Hawaii, walks through the different types of telehealth and what someone might expect.

If you suspect COVID-19, carefully document symptoms. The Centers for Disease Control (CDC) provide a COVID-19 screening tool. Be sure to note anything about the illness or its possible treatment that might be affected by a disability condition.

If testing is prescribed, a drive-through testing site may be suggested. The Americans with Disabilities Act (ADA) affords individuals the right to accommodations when accessing what is publicly available. The Northwest ADA Center provides guidance about drive-through testing, specifically addressing topics related to blindness, deafness or wheelchair access, for example. Prepare for the telehealth appointment with any questions related to drive-through testing and disability, if that topic might come up.

What if I don’t have internet or a cell phone?

Families who do not have internet at home may be able to get service for free or low cost because of the pandemic. Some internet providers offer free internet for a limited time, based on income. Internet Essentials from Comcast and Charter Communications are examples. Their services are based on income, and students with free and reduced lunches are among those who may qualify.

Washington’s  Department of Social and Health Services (DSHS) is providing free cell phones and minutes to low-income families through a federal program called Lifeline. State-specific information about this option is available from the Health Care Authority.

How can I plan for an in-person doctor visit or emergency?

Children with complex medical needs may still need an in-person doctor visit for some conditions. General guidance is to call ahead if there is concern that anyone in the family might be ill so medical staff can take precautions to protect everyone from exposure to illness. In many locations, individuals are screened and checked for fever before they enter the facility.

For a medical emergency, prepare to offer first-responders clear information about the nature of the emergency. If a member of your household has a chronic condition that may create an urgent care situation, prepare a handout with basic information in advance. PAVE’s article about a Care Notebook might help. Because personal protective equipment (masks, gloves, gowns) are in short supply, responders will send minimal staff for less urgent circumstances. If the situation is clearly life or death, a larger team may suit up with personal protective equipment in order to help.

Many dental offices have closed, although some may remain open for emergency procedures. Call ahead: Schedules and policies are changing rapidly.

Caregivers of children with complex needs face additional challenges

Being the caregiver for a child with significant medical needs adds additional layers to current circumstances. Here are questions some will face:

  • Is my child’s medical need worth the risk of exposure to a hospital setting?
  • What are the short-term and long-term considerations in changing the plan for care during this time of national crisis?

The answers obviously are personal and different for every family’s circumstances.

While facing tough choices and uncertain times, your self-care is critical, and PAVE offers an article with ideas just for you. Of course, start with the basics: breathe with intention, nourish your body and seek points of fun and connection each day. Staying connected to a child’s care team can help, so you’re already in touch if there’s an emergent medical situation.

PAVE’s Family-to-Family Health Information Center continues to provide information for families and caregivers of children with disabilities and special healthcare needs in Washington State. Fill out a Helpline Request Form at wapave.org for individualized assistance.

Collaboration on Many Different Levels

This article was submitted by a parent that receives services from the Department of Services for the Blind (DSB) to share her experiences with other parents.

Check out DSV’s website by cliking here

By Emily Coleman

My son, Eddie, was born 10 ½ years ago with Optic Nerve Hypoplasia.  I learned quickly that I needed caring professionals to surround us and help us determine the best way to educate our son. I realized that without people who really knew blindness in our lives, we would be at a loss. From the beginning of his life, collaboration became not only important, but a lifeline. It also inspired me to get further involved in the field of blindness as an educator.

For the past few years, I’ve been working as a Teacher of the Visually Impaired (TVI) in Eastern Washington through the WA State School for the Blind’s Outreach program.  While working in multiple districts, I was able to collaborate closely with students, parents, and a variety of educators.  As a parent of a child who is blind, I learned quickly that everyone brought something unique to the “table” when discussing Eddie. As a TVI, I learned that was true for all children who are blind/visually impaired (B/VI).

Last spring, I moved into the position of Outreach Director at the WA State School for the Blind (WSSB) and WA State Vision Consultant with WA Sensory Disability Services (WSDS). In this new role, I’ve been able to take collaboration to a whole new level.  I’ve had the opportunity to work outside of my family, and my region, and learn from professionals around the state. It’s been a fast-paced adventure that I’ve enjoyed every day.

When I agreed to take this new position, I had to really think about the role WSSB and WSDS play and how I can best serve their missions and the students who are B/VI in our state. I obviously don’t know everything in regards to educating children who are blind…and I never will. As a parent, and as a teacher, I sought out the expertise of others and guidance through collaboration. This drive to collaborate to best serve kids is also shared by WSSB and WSDS, and so I knew that we were on the same page.

WSSB provides support to students via an on-campus program, but also supports students regionally via technology consultation, distant-education courses, online resources, professional development, contracted services, and more…including assistance with birth-through-3 services statewide. WSDS provides many of those same things, but also works in collaboration with the Deaf-Blind Project, Center for Childhood Deafness and Hearing Loss http://www.cdhl.wa.gov, WSSB, and other agencies, including DSB.

The combined knowledge and experience in WA State is substantial, and collaborating is an effective way to serve kids and move them towards greater independence. I invite you to reach out to me as a parent, educator, or consultant if you have questions or concerns regarding your own child or a student who is B/VI. Whenever possible, I’ll be a gateway to other professionals and further expertise, through the act of collaboration.

Emily Coleman

emily.coleman@wssb.wa.gov

 

When your loved one has to be admitted to the hospital

When your loved one has to be admitted to the hospital, it can be scary, stressful, and at certain points very overwhelming not only for you, but also for the person needing the health care.  What I have learned after caring for my son who was born at 26 weeks and experiences hydrocephalus (cerebral spinal fluid does not drain properly and requires a shunt to drain the fluid to his peritoneum) is that when he is in the hospital, I never leave him alone.  I have always been deeply involved in his health care, much to some nurses’ and doctors’ irritation…  However, after what we have experienced in the hospital, I believe it is vital that your loved one has an advocate to ensure the best care possible is delivered and also to help when a nurse or certified nursing assistant can’t get to the room quick enough to assist.  For example, if your loved one is receiving intravenous antibiotics, which can cause explosive diarrhea or potentially life threatening allergic reactions, sometimes it can take 5 – 15 minutes for someone to respond to a call button. By that time the situation can be much worse if your loved one is alone.

During one hospitalization, my son developed Red Man Syndrome, which is a sudden allergic reaction to vancomycin.  One minute he looked fine and literally two to three minutes later, he was red from his chest up to his forehead.  After pushing the call button and waiting one minute with no response, I ran to the nurses’ station, where no one was there, found a nurse down the hall and demanded to have the IV stopped.  The nurse had the nerve to argue with me that she didn’t think my son was having an allergic reaction.  I demanded again to have the IV stopped and for her to call the doctor.  While she was calling the doctor, I googled allergic reactions to vancomycin and discovered Red Man Syndrome where 47% of people receiving IV vancomycin develop the allergy.  When the nurse came back, I showed her the information and she was shocked.  I’ve even had to ask phlebotomists (technicians who draw blood) to put gloves on before they take blood or start an IV on my son.

The unfortunate reality of what happens in hospitals is that many staff are overwhelmed, may have had a mediocre education, or perhaps chose health care for less than authentic reasons.  I have witnessed nurses purposely medicate a loved one in order to make their day more manageable.  I have personally experienced less than adequate health care while hospitalized for preterm labor and miscarriage, and I look back now realizing that these events occurred while I was alone.

Here are some helpful hints to prepare for a potential hospitalization:

Do your homework about your local hospitals. The Joint Commission is an independent, non-profit organization that accredits and certifies over 20,000 health care facilities in the nation.  They have an online “Quality Check” tool where you can see how your local hospitals are rated (http://www.qualitycheck.org/consumer/searchQCR.aspx). Another safety rating organization called the Leapfrog Group is composed of a group of large employers that came about to discuss how they could work together to use the way they purchased health care to have an influence on its quality and affordability.  They collect data on hospitals all over the nation and produce a Hospital Safety Survey that consumers can check (http://www.leapfroggroup.org/).

Evaluate your doctors and health care staff.  Do they listen?  Do they respond in a timely manner?  Do they treat you with respect and compassion?  Do they empower you to manage your own health care?  Are they open to holistic options and discuss the importance healthy nutrition and exercise?

Empower yourself with information about any diagnosis your loved one may experience, treatment options, and any local, state or national organizations specializing in that health condition.  Your state Family to Family Health Information Center can help you with that (http://www.familyvoices.org).  PAVE supports the WA State Family to Family Health Information Center and you can contact Jill McCormick, the Program Director at JMcCormick@wapave.org .

One of my colleagues at PAVE shared this helpful hint:  Have an overnight bag packed and in the trunk of your car because you never know when you might have a medical emergency with a loved one.

Establish a local network of friends and family members who can support you when you need a break.

Ask questions to medical staff about what drugs or procedures are being used, why, and any side effects.  Insist they wash hands when they come in the room or use gloves.  Understand there is a reason it is called “the practice of medicine.”

Use medical alert bracelets to identify allergies, implanted devices or diagnoses.  These tools can be vital in alerting emergency personnel if you or your loved one is unconscious.

Complete your own advance directive and help your loved one complete it as well.  After experiencing the tragic death of my mother who did not have an advance directive, my sister and I had to witness her suffer because her husband insisted on ineffective life support.  My son and I have completed ours and we carry them with us.

According to the Leapfrog Group, “there are more deaths in hospitals each year from preventable medical mistakes than there are from vehicle accidents, breast cancer, and AIDS.”  During my son’s last hospitalization in 2012, my father who was, at the time, CEO of Providence Alaska Medical Center, leaned over to me while we were in the emergency room and whispered, “Don’t leave him alone.”  So I didn’t. And I will not. Not for as long as I live.