One of the first actions you should take is to create a Personal Summary/Health Profile of your child or young adult, something like a snapshot. This, once done, will permit you to review your current status, changes in conditions and will provide you with a record or mini-history. We have provided several different types of information forms that will help you to create this Profile. There are various ways of creating a Health Profile: in a notebook, on a series of forms, or on the Internet. All Profiles will need to be updated continuously, as conditions and services change, and online versions are designed to be easily updated over time.
Personal Summary/ Health Profile: This Summary/Profile includes personal information, medications, allergies, diagnoses, Medicaid number, immunizations, medical conditions, diagnostic/surgical procedures, hospitalizations, and more.
Examples of Health Profiles forms:
- “Hi Doc” Health Information Form by New York State Department of Health is a Health Summary for children with special healthcare needs that permits the parent to describe easily all of a child’s health information, and share it with healthcare providers. It is recommended that a new form be filled out every year. (9)
- Parent to Parent Health Care Notebook by is described as having value that far exceeds simple organization. It is a tool to help in developing a partnership with the professionals who provide care to your child. As you become more organized you will develop the skill of “when and then.” You will approach your healthcare professionals thinking, “When this happens then I will….” (10)
- Health Vault by Microsoft is a good online version of a Health Profile or Summary. It is completely updateable and has many possibilities for establishing alerts, prescription tracking over time and many other features. (11)
- The Healthy Transitions NY website is one of the best overall web-based resources for youth with developmental disabilities/medically fragile conditions. It offers a section on Keeping a Health Summary (12)
- My Health Passport by the Florida Center for Inclusive Communities is a document that describes important aspects of an individual’s special healthcare needs. The form is available in English and Spanish.
Emergency Information Summary: Below are forms you can print or download that provide you with not just a medical summary, but what to do in an emergency:
- Emergency Medical Information for Children with Special Needs from the American Academy of Pediatrics
- The Transition Information Form on the Healthy Transitions NY web site is adapted from the AAP/ACEP Emergency Information Form. It provides summary information and specific information relevant to emergency care. It can also be used as a planning tool—to identify adult healthcare providers and health related services when youth transition out of school and other pediatric oriented systems of care. (13)
Other Useful Medical History and Emergency Forms
Medical Appointment Form. An excellent form for keeping track of and preparing for a medical appointment may be found at Westchester Institute for Human Development. Other forms on this site are useful as well. (14)
MedicAlert Kid Smart membership (requires membership fee) is a special service that ensures children and teenagers (17 and under) with medical conditions, allergies or special needs are protected by a live 24/7 emergency response and family notification service. Kid Smart membership can also provide parents/caregivers peace-of-mind, should the child wander or become lost.