A Care Notebook is an important tool for parents of children with special medical and school needs. This “notebook” might be a three-ring binder, an accordion file or a portable file box; it’s a place where you gather and organize important paperwork. You can include business cards and contacts, a call log, a calendar, emergency/crisis instructions, prescription information, history, school programming and other important documents that relate to your child’s unique needs for support and care.
Your portable Care Notebook should be kept up-to-date, with the most current versions of medical or school programs. Older files and records can be stored at home for reference. An important element of your on-the-go notebook is a pull-out document that provides a snapshot of your child’s unique needs. Depending on your child’s needs, you might create multiple copies of this document or you might make different versions for easy sharing with daycare providers, school staff, babysitters, the emergency room, summer camp counselors (see PAVE’s article) or others who support your child.
If building a Care Notebook sounds daunting, don’t worry. Most people start small and try different approaches until they find the best fit. Here are a few ideas to help you begin.
- Choose a holding system that makes sense for your organizational style: notebook, accordion file, small file box…
- Identify and label the document sections by choosing tools that fit your holding system: dividers, clear plastic document protectors, written or picture tabs, color coding, card holders for professional contacts…
- Include an easy-to-access calendar section for tracking appointments.
- Include a call log, where you record the names (take time to spell full names correctly!) and phone numbers of professionals you talk to. You can take notes to create a written record of a conversation. You can also send a “reflective email” to clarify information shared in the call, then print your email and tape it into your call log to create a more formal written record of the call.
- Use clear plastic sleeves for single pages or a small notebook for easy-reference information to share with a caregiver in a new situation (daycare, doctor, camp, overnight, emergency room…) Mommies of Miracles has an All About Me template.
- Be creative! Use pictures, drawings, stickers… When appropriate, invite your child to participate.
- Use technology: A website called Health Deals provides linkages to 4 Top Apps for Organizing Your Medical Records.
Your child’s medical providers might help you write a care plan and can provide specific contact information, medication lists and emergency contact procedures for each office. Your school can provide copies of an Individualized Education Program (IEP), a Section 504 Plan, a Safety Response Protocol, a Behavior Intervention Plan or other documents. If your child is at a state supported daycare (on location or in-home), staff can provide forms for emergency procedures and contacts.
Many agencies provide online templates and information. Seattle Children’s Hospital, through its Center for Children with Special Needs, provides a downloadable Planning-Record-Keeping Care Organizer on its website.
The American Academy of Pediatrics sponsors the National Center for Medical Home Information and includes a care-planning tool on its resource pages for families.
A broader search, by simply typing Care Notebook into your website browser, provides access to a variety of tools that might be a good fit for your child’s specific diagnosis, age or situation. Swindells, an agency in the Providence Health and Services network, will send you a pre-filled binder by mail or you can download the pages (available in English and Spanish) to file in your own binder.
Your care planning tool can save time and provide easier access to information and resources as unique situations arise. This tool also can provide organized access to critical information if you apply for state 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 can also help your child transition toward adult life. Easy access to a list of accommodations can ease that first meeting with a college special services office, for example, 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 your child learn what medications they are taking and advocate for an adjustment with an adult provider
Building a care notebook takes effort at first, but you will thank yourself when you have just what you need, when you need it. And get ready to share your awesome organizational skills, habits and tools with your child!