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:

Quick Look: How to Prepare for a Virtual Meeting

Schools and families continue to meet virtually to discuss special education services during the closures related to the coronavirus pandemic. Here are tips to help family members prepare for remote meetings to discuss a student’s Individualized Education Program (IEP), a Section 504 Plan, evaluation for special education services or something else related to a special education student’s needs and learning program.

For more comprehensive information, see PAVE’s article, IEP on Pause? How to Support Continuous Learning with School Buildings Closed.”

  • Determine a regular communication plan with the school. That might include email, telephone, text, web-based meetings, U.S. mail, packet delivery by school bus…  whatever works for regularly checking in.   
  • Family caregivers can request meetings. PAVE provides a template to formalize the request: Sample Letter to Request an IEP Meeting. Included with the letter template is detail about who is required to attend IEP meetings, and those requirements have not changed.
  • The Special Education Continuous Learning Plan is provided by the Office of Superintendent of Public Instruction (OSPI) to support but not replace the IEP during the national crisis caused by the coronavirus pandemic. Included in the form is a sample meeting agenda.
  • Consider confidentiality and privacy issues. Ask school staff to describe how privacy and confidentiality are protected through a suggested meeting platform, and make sure to have any passwords or PINs ready to use when you log in or call into a meeting.
  • Before a meeting, ask to sign any necessary paperwork or releases to have special education records sent electronically via email. Special education records can include meeting notifications, IEP or Section 504 documents, assessments, progress reports, Prior Written Notices that describe meetings and planned actions, or other materials that contribute to the program review and goals.  
  • Review records before the meeting and write down questions to ask during the meeting. PAVE provides a Parent Handout Form or, for self-advocates, a Student Handout Form, that can help organize concerns and questions. Another version of a Parent Input Form is provided by the Washington Office of Superintendent of Public Instruction (OSPI).
  • Carefully review goals, services, accommodations, modifications and consider how they might apply or need to be adjusted for current circumstances. Think creatively and prepare to collaborate and request expertise from school staff. Pay special attention to the present levels of academic achievement and functional performance. These present levels statements, within the first pages of the IEP document, describe how the student is doing and where there are challenges. Wrightslaw.com provides tools specifically to support parents in reviewing IEP present levels in preparation for a meeting during COVID-19.
  • Consider whether the student will attend the meeting. A student who is 14 or older is invited as part of the state’s Pathways to Graduation planning. PAVE provides an article: Attention Students: Lead your own IEP meetings and take charge of your future.
  • Communicate early—before the scheduled meeting—to request updates about progress, a student’s present levels of performance, or other concerns. If family caregivers build a handout for the meeting, that can be submitted ahead of time to ensure that this information is part of the agenda.
  • Family members can request a practice session to test the technology. Part of that training might include practice sharing the screen to make sure everyone will be able to view important documents during the formal meeting.
  • As with in-person meetings, family participants can invite support people. A friend or family member might be able to attend and take notes.
  • Refer to parent and/or student input forms to stay on topic and ensure that all concerns and questions are addressed.
  • When the meeting ends, family participants can ask for a copy of the program recommendations page.
  • After the IEP meeting, the school provides a Prior Written Notice (PWN) to the family participants to review meeting notes and any decisions, agreements, or disagreements. Ask when and how the PWN will be provided. Family participants have the right to request amendments or corrections to the PWN.
  • Be sure to leave with a clear action plan. Here are key questions to ask and record:
    • What will happen?
    • Who is responsible?
    • When will the actions happen? Are there timelines?
    • How will we communicate for follow through?
  • As with any meeting, any unresolved issues can be addressed in a follow-up meeting.

To learn more, PAVE provides a six-minute overview of IEP basics and a 30-minute training video about special education.   

Map Your Future with Person-Centered Planning

A Brief Overview  

  • Person-Centered Planning (PCP) is a method for helping a person map out a future with intention and support.
  • PAVE staff member Michele Lehosky, PCP facilitator, provided a training at PAVE’s Tools 4 Success conference in March 2020. Here’s a YouTube video from that virtual conference: Build Your Dream Map.
  • Read on for more information about what Person-Centered Planning is like.

Full Article  

Everyone dreams about what they might do or become. Individuals with disabilities might need additional support to design the plans, set the goals and recruit help. The Person-Centered Planning (PCP) process is a tool that works like a Global Positioning System (GPS) to help a person figure out where they are starting and how to navigate to a planned destination.   

A PCP session is a gathering that can happen in a specific physical location, such as a school or a community center, or in a virtual space online. The people who get together might include family members, friends, teachers, vocational specialists, coaches—anyone who might help brainstorm ways to plan an enriched, full life for a person of honor.

The first step is to celebrate the gifts, talents, and dreams of the person. Then the group develops action steps to help that person move closer to their dreams and goals.  

Throughout the gathering, the attendees listen, ask questions, and draw pictures or write down words that contribute to the process. Respect for the person’s goals and wishes is a priority, and participants withhold judgment to honor the individual completely.  

Person-Centered Planning explores all areas of a person’s life. All people experience various times in their lives that are transitions. High-school graduation is a major example. Job changes, moving to a new home, entering or leaving a relationship: Those transitions happen for individuals with and without disabilities.

Individuals with disabilities have some additional transitions. For example, when a person leaves the special education system of public education at graduation or after age 21, there is a change in disability protections. A student receiving special education is protected by the Individuals with Disabilities Education Act (IDEA). In adult life, the right to accommodations and non-discrimination is protected solely by the Rehabilitation Act of 1973 (Section 504) and the Americans with Disabilities Act (ADA).

There are specific transitions that occur for individuals who qualify for support from the Developmental Disabilities Administration (DDA), which in Washington is part of the Department of Social and Health Services (DSHS). Employment and workforce training programs often are part of the transition from high school into what happens next.

During major life transitions, many service agencies focus on a person’s inabilities or deficits.  Person-Centered Planning, on the other hand, focuses on what’s positive and possible, based on the dreams and goals of the individual.

A PCP session includes a set of maps where information is collected in words and pictures. Here are some examples:

People in my Life     

This map names important people and their roles in concentric circles. These are people that the individual trusts for help and support and may include paid and unpaid supporters. Those who are closest to the person are in the circles closest to the center of the map.

Who am I?  My Story, My History    

This map is built during the session to describe the person’s story from birth up until the gathering. This map reflects what is most important to the individual. The facilitator might ask:

  • What parts of your life are important for people to know?   
  • What are some stories of your life that would be helpful for a coworker or a friend to know? 
  • Are you a sibling? A spouse? A parent?
  • How old are you? 
  • What activities do you participate in? 
  • Have you had any jobs?
  • Where do you live? Go to school?  
  • Do you have a medical concern that someone spending time with you might need to know about? 

 Likes and Dislikes  

The “Likes” list includes favorites, things that make the person happy. Favorite colors, foods, activities, places, people are listed. 

The “Dislikes” list includes the opposite of all those things and might also list triggers (bright lights, loud noises, angry voices, bullies) or other sensitivities.

What Works/ Doesn’t work 

The first part of this map asks: When learning a new activity or skill, what are steps and learning tools or activities that work for you? Answers might look like these examples: frequent breaks, accommodations, a written schedule, a list of duties, instructions in larger print, a preferred time of day to start something…. 

The second part asks: When learning a new activity or skill what activities do not work for you? Answers might resemble these examples:  waiting in line, too many instructions, too many people barking out orders, standing or sitting for too long, verbal instructions, unclear expectations….  

Gifts, Talents and Strengths  

This map asks several questions: 

  • What are you good at?
  • What can you do that is easy for you? 
  • What are your best qualities? 
  • What do people like about you?   

Examples for answers:  best smile, cleaning, giving, caring, natural dancer, very social, great with computers, good with numbers, great at sports, good listener, good with animals, etc.   

Dreams /Nightmares 

The My Dreams map asks: Where you would like to see yourself in a few years?  Follow-up questions:

  • What will you be doing?
  • What would your dream job be?  
  • Where are you living? 
  • Do you live on your own or with family or a roommate?  
  • How are you keeping in touch with your friends?   
  • What is an action you can take to move toward your dream or goals?    

The Nightmare Map asks:  What do you want to avoid?  Follow-up questions might include this one: Where do you not want to be in a few years? This is not to make the person feel bad but to make an out-loud statement about what the person doesn’t want to happen. This can include actions or thoughts that someone wants to avoid.  

Needs 

The Needs map asks:  What do you need help with to avoid the nightmare?  A follow up question might include: What areas do you need support with? Answers might look like these examples: budgeting money, learning to drive, training to ride the bus, cooking lessons, looking for a job. The goal is to recruit support to help the person stay away from the nightmare and work toward the dream.   

Action Steps  

A map that show Action Steps includes the specific help that will assist the individual in moving toward the dream. This chart typically details what needs to be done, who will do it, and by when. 

Example:    

Goal: To Write a Resume     
Who: Michele 
What: Call Mark to ask for help.  
By When: Next Monday, April 6, 2020 

This process involves many support people in the person’s life and identifies, in a self-directed way, areas where help is needed to meet personal goals. The gathering involves the important people in someone’s life because they can help through the process and step up to offer support for the action steps. 

How to get a Person-Centered Plan  

Here are places that might help you find a PCP facilitator in your area:  

  • Developmental Disabilities Administration (DDA) 
  • Division of Vocational Rehabilitation (DVR)
  • School District 

If you live in Pierce County, Wash., PAVE offers PCP facilitation. Please fill out a Helpline Request Form at wapave.org and ask for PCP support. One of our coordinators will contact you.  

Here are a few additional places to seek information about Person-Centered Planning:  

Inclusion.com: All My Life’s a Circle  

Inclusion.com: The Path Method 

Video from PAVE, Tools 4 Success  

Informing Families.org