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Getting Started
Get Diagnosed
Gathering Important Information
Organizing Your Information
The Educated Parent
Early Intervention
What To Do First
What is Early Intervention?
Keeping an IEP Notebook
Preparing for an IEP Meeting
Conducting an IEP Meeting
Individuals With Disabilities Act
IDEA ACT - A Quick Reference
IDEA Legal Text
Family Finances
Recommended Resources
Introduction to Universal Housing Design
Housing options
Building a New House ~ That Works!
Introduction to Universal Housing Design
Entrances and Thresholds
Single Family Home Resources
Remodeled Bathroom
Ceiling Lifts
Problem Spaces
Adding a Ramp
Good Restroom
Not So Good Restrooms
Great Space Adaptions
Not So Great Adaptations
Ramp Design
Ramp Design (Part 2)
Commercial Ramps
Public Access Ramps
Adding a Ramp
Retrofit Door Sill Ramp
Medical Bills
Filing an Appeal
Medical Expenses and Income Taxes
Finding Help for the Uninsured or Underinsured
Free or Discounted Prescription Programs
Medicaid Waivers
Legal Adults - Introduction
Guardianship and Declaration of Incapacitation
Establishing Guardianship and Obtaining a Declaration of Incapacitation
Dependency Determination (Military)
When to Start the Transition Process
Begin Transition - Age 14-16
Exploring Possibilities and Guardianship Issues - Age 17
Age 18
After High School Graduation - Age 19-22
Post High School Education Options
Future Housing Options
Specialized Medical Equipment
Wheelchair Evaluation
Wheelchair Safety
Introduction: Special Needs and the Military Family
DEERS & ID Cards
Dependency Determination
TriCare Introduction
TriCare Program Options
Exceptional Family Member Program (EFMP)
Individual Case Management
TriCare Extended Care Health Option (ECHO)
Early Intervention
Housing Options
Family Support Services
Community Contacts
Letters of Medical Sufficiency
Wheelchair Accessible Vans
Van Conversion: A good Example
Fund Raising - The Flamingo Air Project
Utah DSPD Complaint List Winter 2011

Organizing Your Information

After a few visits to doctor's offices alone, the amount of paperwork accumulated can become a problem. Every office visited along the way will result in some sort of paperwork for parents to keep track of. It is important to keep it stored in one place and in a portable format.

  1. PORTABLE RECORDS - We recommend a binder with at least 1-inch rings and a zipper closure to prevent loss of paperwork. You really don't want any of this lost under someone's car in the parking lot ...when it's raining. While you're at it, pick up a package of dividers, some lined paper, and two zippered pouches. One pouch for holding pencils, pens, highlighters, sticky notes, etc. and another for holding insurance cards/information.

    Once you've got the binder and supplies, we move on to the next question..."What goes where?"

    The first page should be a "Questions Page". (Available in "FORMS" section) Use this form for jotting down any questions you may think of as you are going throughout your day. These are questions you will want to ask during upcoming visits to any of the physicians or treatment professionals providing care for your child. Questions written down will not be forgotten and will enable you to take notes and file the answers in the appropriate sections following your visit.

    After your "Q&A" page(s), the next section of your binder should be for all of the basic information you have collected regarding your child's medical condition and medical history. (See "FORMS")

    The following sections of the binder should be divided alphabetically for each individual care provider. This will include all physicians (their notes, instructions, care sheets, etc.), hospitals, therapists, social workers, agencies, labs, teachers, etc. Anyone involved in the care of your child should have a section. Some lab reports and letters from physicians or therapists regarding basic diagnosis information or specific recommended treatment should be copied. Originals need to be filed for safe storage and the copies should be included in your binder. This binder goes with you to every visit or treatment session.

    Information that becomes outdated should be filed in your permanent paper file for later reference. Only current information should be maintained in the binder.

  2. STORAGE - The second thing you will need is something for file storage. This can be a cardboard file box, plastic file crate, any form of filing cabinet/storage unit that you choose. Don't forget to pick up some file folders too. File storage is for older information too bulky to carry in a binder yet needs to be kept for future reference. Over time this can become a rather large collection of documents but it will be important to keep them. These documents are essential for tracking your child's progress and will keep information from being lost.

    (Hospitals and other medical offices are notorious for loosing archived records.)

  3. DOCUMENT MANAGEMENT - For those of you with a computer, we would recommend considering investing in an all-in-one printer/scanner/fax/copier machine. For those of you without a computer, we recommend a "stand alone" version that will give you most of the same capabilities without the need for computer hookup. When shopping, look for "Print/Fax/Copy" features.

    We cannot express strongly enough how invaluable a fax machine will be when you are trying to co-ordinate information between home, doctors, and insurance companies. Having a computer will also allow you to scan and file your documents to a disk. This will help prevent any loss of records. This is not a replacement of the original paper file but a backup to the originals and needs to be stored in a separate and safe location. We recommend this backup be kept in your safe-deposit box and updated every six months or as necessary.

  4. FORMS - There is a lot of information you will need to have on hand. The following forms are provided here for your use in recording basic medical information. Additional forms relating to other topics on this site are available through the "Forms" button of the navigation bar to the left.

Download PDF Forms:

Basic Medical History Family Medical History Development Progress Record Procedure Log
A free copy of Adobe's Acrobat Reader can be obtained by clicking the following link.