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How Do I Keep Track of All These Papers?

Doctor reports, test results, hospitalizations, special education plans, the medication information the pharmacy gives you for each new prescription—it is enough to make anyone feel overwhelmed.

The good news is that simple tools are available to help you organize your child’s health and development information and history. If you are a teenager or young adult, there are tools to help you begin taking responsibility for your own health history and information.

While your child’s medical home doctor or clinic keeps a medical history of your child, there may be emergencies where you or other health care providers will need that record and not be able to get it quickly enough.

Organizing the paperwork that shows your child’s health and developmental history makes you and your family a more effective partner with service providers:

    • You have the written information providers need in the medical language they need.
    • You can ask providers to explain words or information you don’t understand
    • You don’t have to worry about forgetting the details of surgeries or tests that happened years ago
    • You will feel more confident in filling your medical home role as the expert on your child (or yourself if you are a teen or young adult).

Care Organizers

A Care Organizer is usually a notebook, binder or folder. You can use a Care Organizer to keep and track important information about your child’s health and developmental history, treatments, medications, surgeries, therapies and so on. The organizer is one way for you to manage, organize and communicate health and services information with your child’s care team.

An organizer should include the most important information, but may include anything related to your child such as:

  • Your child’s birth information, such as date, height, weight, length and gestation (length of pregnancy)
  • Phone list of physicians, pharmacies, agencies, programs and other contacts
  • Insurance information
  • Emergency information, including an emergency plan (see below)
  • Current care plan (see below for a care plan)
  • Growth chart
  • Immunizations
  • Lab results and procedures
  • Calendar for appointments and follow-up schedules
  • Medication records, including dosages, frequency, side effects and other related issues
  • List of treatments or therapies and their frequency
  • Your child’s growth information
  • Hospitalizations, including when and what the hospitalizations were for
  • Financial records, bills, and payments

It may also include information related to your child’s school, or other activities that you wish to record. You can make your own organizer or adapt an existing one.

Washington State Care Notebook
A Care Notebook and an organizer (folder) version have been developed for use in Washington State. The Care Notebook is a three-ring binder that contains sheets to help parents track detailed information about their child with special health care needs and folders to organize paperwork. The Care Organizer is a plastic expanding file folder with individual pockets labeled to help organize paperwork. You can print out individual pages or order a copy for your child.

The notebook was developed at the Center for Children with Special Needs, a division of Seattle Children’s Hospital with funding from the Department of Health, Children with Special Health Care Needs Program.

TIP: The CSHCN Coordinator at your local health department can show you how to use these materials if you want more help making using the notebook for your child.

Other Organizer/Notebook Examples

    • In Washington State, Mary Bridge Children’s Hospital in Tacoma has adapted a very nice care notebook with extensive graphics for their patients.
    • Medical Home Care Notebook pages from The National Center for Medical Home Implementation.

Care Plans

A care plan is a written health care plan for your child that may include what medications or services your child needs and which specialists your child needs to see. It can include plans of how you will get the services or who may help you with those services. It can address physical needs, emotional needs, or environmental needs. A care plan is a tool to help you and the professionals agree on and document what services your child needs and will receive, when, by who and at what frequency. The care plan should also include who is responsible for making sure each piece happens.

A care plan can be a checklist to remind physicians about issues to address. The plan can be kept in a care notebook, at schools, child care centers and other places that need to know the needs of your child.

Tip: At the very simplest level a care plan can be useful as written list of instructions from the doctor or nurse for your family explaining what to do and expect in the near future for care.

If your physician does not have a care plan for your child, consider asking for one. It can be a great way to share and coordinate information among all the people who provide care for your child.

Care Plan Examples:

 

Emergency Information Forms

Children with special health care needs have unique medical histories and sometimes require very special medical treatment. If emergency personnel do not have access to this important information, children are in danger of delayed treatment, unnecessary tests, and even serious errors. It is extremely important that parents and physicians work together to give emergency providers access to the special information they need to properly care for the child.

    • Emergency Information Form for Children with Special NeedsThe American Academy of Pediatrics (AAP) and the American College of Emergency Physicians have developed the Emergency Information Form. This form can help you record health information for your child for doctors and emergency medical people such as paramedics and firefighters responding to a 911 call. An interactive version of the form as well as sample versions and additional information are available through the AAP website.TIP: Suggested places that you can keep copies of the emergency form include; your child’s back pack, school, childcare, home, in your car and/or with you. You can also give it to the people responsible for your child when you are not present, such as when your child is playing at another child’s house or participating in extracurricular activities.
    • Additional information on preparing for emergency room visits can be food at the National Center of Medical Home Initiatives for Children with Special Needs

Office Visit Forms

When you have a child with special needs it is sometimes harder to keep on top of routine care, such as well child visits. This section is to help you:

  • Remember when to get immunizations, monitoring for height, weight and vision checks and what to expect at each visit
  • Prepare for each visit and bring your questions with you

Well-Child Visits

Many doctors’ offices will use checklists during well child visits and share written material on health or developmental issues particular to your child or child’s age. Some may mail you reminder cards to let you know it is time to make the next appointment.

State and national efforts include:

  • Child Profile
    CHILD Profile sends health promotion materials to all parents of children birth to age six in Washington State. The materials contain age-specific information about growth, development, safety, nutrition, and other parenting issues. There are a total of 17 mailings, timed to match with the American Academy of Pediatrics -recommended schedule of well-child visits. CHILD Profile is a program of the Washington State Department of Health.
    Spanish: http://www.childprofile.org/espanol/default.html
  • Bright Futures
    The national Bright Futures health supervision guidelines are built on the principal that every child deserves to be healthy, and that optimal health involves a trusting relationship between the health professional, the child, the family and the community. Bright Futures materials help families and professionals know what to expect at each well child visit and how to work together for the health of our children.The Bright Futures website includes forms for growth charts, immunization schedules, growth and development, nutrition, physical activity, dental health and much more information that you can use.
    Also:
    Family Encounter Forms go over what to expect at scheduled visits
    Family Tip sheets with general health and developmental information at particular ages

Other Office Visit Forms

Some doctors’ offices will also give you a form when you come in to help organize the visit and prioritize what you need done in the limited time available: A typical form might ask:

    • What is the main reason for today’s visit?
    • Other concerns to address if there is time
    • Any prescriptions, referrals, school forms or other forms you need?
      If your doctor’s office does not have this kind of list, you can bring your own to help you remember what you would like to cover.

Adolescent Health Transition Materials

Transitioning from pediatric care to adult health care can be made easier with some advance planning. Visit the Washington State Adolescent Health Transition Project website for tools to anticipate and organize this journey.