There are a number of online systems, networks, and apps that can help you and your child's health care providers to keep and share important information about your child to reach the best possible health care outcome.

What is a State Health Information Exchange (HIE)?

How does participating in an HIE help me and my family?

• Safer emergency treatment - Medical staff will know right away about your allergies, health problems, medications, and prior visits, helping them care for you without delay.
• Better communication and information - HIE gives your care providers more access to the information they need to diagnose your health problems earlier and recommend treatment.
• Improved Care - Access to information about care you received elsewhere gives a better, more complete picture of your health. Viewing your complete medical history—including lab history, medication and immunization histories—helps your provider make better decisions about your care.
• Patients save time and money - Providers can access up-to-date patient health information, eliminating the need to create new files or fill out duplicate forms. Even your prescriptions can be sent electronically, allowing your pharmacist to prepare your medication before you arrive.
• Patient empowerment - HIE technology helps you to take a more active role in your health and in the health of your family. You’ll be better informed, so you can take personal responsibility for your healthcare. You can receive an electronic copy of your medical information and share it securely over the Internet with your providers and they can follow up with you on the HIE.

How do I know my information is kept private and secure?

What questions should I ask of my doctor or patient representative?

1. Is my health information automatically shared in the HIE?
2. Who controls my information? Me, the HIE, or my doctor?
3. What if I don’t want some or all of my information shared?
4. What happens when I opt in? What happens when I opt out?

What is a patient portal?

Many states are now offering fast and easy online applications for assistance programs such as Medicaid, Supplemental Nutrition Assistance Program (SNAP), Temporary Assistance for Needy Families (TANF), Energy Assistance, and Child Care (available programs will vary from state to state). Through the website, you can find out which programs you may be eligible for and submit a single application for all of them, saving time and effort. In addition to applying, you can also create an online account that provides information regarding your application and your case. Your personal account will allow you to:

• Access basic personal case information
• Check your application or case status
• View benefit approvals, denials, and notices
• Check balances for SNAP or TANF
• Renew your benefits
• View important notices for actions needed on your case
• Report changes to your case
• Update your account

The goal of these online accounts is to give clients 24/7 access to their case information and create an easier way for clients to communicate with the Department overseeing their case and makes the process much faster. To locate assistance programs in your area, and find out how to apply and create an online account, go to: Benefits.Gov.

The Supplemental Security Income (SSI) program (through the Social Security Administration) pays benefits to disabled adults and children who have limited income and resources. The Social Security Administration provides a service to recipients, the "my Social Security" account, which is an online account that you can start when you begin working and use throughout your life. This service allows people to do business with Social Security without having to visit an office or make a call, and wait for a letter to arrive in the mail. Social Security and Supplemental Security Income (SSI) beneficiaries can access their benefit verification letter, payment history, and earnings record instantly using their “my Social Security” account, as well as change or update information.

One of the greatest benefits of a "my Social Security" account, is that you can go online to instantly get a copy of your official benefit verification letter, which serves as proof of income and disability status. If you are at least 18, and you are an SSI beneficiary, you can sign up for an account at My Social Security.

If you are at least 18 but are not receiving SSI benefits, you can still sign up for a "my Social Security" account to get a personalized online Social Security statement that gives you access to earnings and benefit information. In addition, it includes links to information about retirement, disability and Medicare. For more information, see My Social Security.

When caring for a child with special health care needs, families collect information, forms, and paperwork from doctors, therapists, school, and many other sources. Organizing and record keeping can be a hard to do, but having a system will make your life much easier, and can help your child to receive the best and most efficient care and services.

One mom said, "I did not keep my child's records organized. Some of it was in a file, some in a folder, and the rest was lost in a stack of papers and bills somewhere in my house. When his clinician asked for dates of procedures and diagnosis, I had to make phone calls and request copies of the information I had misplaced. Now, I no longer have that problem, because I keep all of the important information about my child and his needs in a binder. I take that binder with me to all appointments and can add new information and paperwork into it as I get it."

Another mom said, “I look at the Care Notebook as my son’s instruction manual! It gives me great peace of mind knowing that the vital information to keep him safe, happy and healthy is available in the event I am not there to communicate it to others. It is all about him, yes it has medical information, medications and contact numbers but it also has information about how to communicate with him and what he likes and dislikes, which is just as important.”

Although electronic health records have helped many organizations and individuals to store records in one location “in the cloud,” electronic records sometimes add to organizational challenges: some of the information is digital and some is printed. It’s difficult to keep track of everything. Whether you choose to print it all, or scan all of your child’s paperwork, organize the information in one place. This will allow easy access when this information is needed for appointments, applications, caregiver instruction, and emergencies. Find a system that works for you, and stick to it.

There are many ways to organize information to have on hand when you need it:

• Some parents use a binder or “Care Notebook” for the most recent and important information, and as time goes on, they file older information away in a separate file folder, box, or expandable file.
• Many families have chosen to download and keep important information on a USB Flash Drive, which can be easily accessed on any computer with a USB port.
• Most of the time, paperwork and medical bills older than 3 years can be discarded and shredded unless it is information about a specific diagnosis or health care need and would be helpful for future appointments, procedures, or decision making.
• Cloud-based storage provides a ready-made virtual data storage solution, and is becoming more popular. When using a cloud storage service, make sure the service providers are following federal standards and regulations, such as the Health Insurance Portability and Accountability Act (HIPAA) and the Health Information Technology for Economic and Clinical Health (HITECH) Act.

Care Notebook

• From Utah Family Voices, this care notebook incorporates pages and ideas from various states. Use selected pages or the entire notebook:
  • Collaborative Care Notebook ( 467 KB) - PDF version – print and fill out
  • Completo Cuaderno de Cuaderno (Complete Care Notebook Spanish) ( 1.4 MB) - Al cuidar la salud de su niño con necesidades especiales, usted puede recibir copias e información de muchas fuentes. Un Cuaderno de registro le facilitara a organizarse mejor con la información más importante. Con un cuaderno de registros le será mucho más fácil para usted encontrar y compartir una porción de información con otros quienes son parte del equipo del cuidado de su niño.

• Portable Medical Summary ( 70 KB) - A 2-page form to keep track of medical information including diagnoses, medications, equipment, hospitalizations, and insurance. This could be carried in a wallet or pocket at all times or for short medical visits when the complete Care Notebook may not be needed.