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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

Gathering Important Information

You need to collect all the information you can. Parents are handed a lot of information over time to keep track of. We'll talk about how to organize it all in the "Get Organized" section a little later but for now lets focus on collecting it. (The "Forms" button will take you to documents that will assist you in collecting this information.)

There is a basic set of questions that people will be asking you repeatedly. It will be most helpful to have this information right at your fingertips whenever you see a brand new physician, go to a new hospital or facility, see a new therapist, or have lab work done. This will include birth information (height, weight, gestational age at birth, APGAR scores, etc.), and additional information regarding any adverse situations and/or problems with pregnancy including labor and delivery. A current health history including lab tests with results, initial exams with notes, and diagnoses that lead physicians to believe that there is a problem with your child. All of this information will need to be readily available. We suggest that you keep a portable, detailed record in a three-ring binder. You, the parent, need to be responsible for maintaining your own personal copies of all records. No one else is going to do this for you.

Given the new HIPA Act, it will be easier and less expensive for you, the parent, to request any tests, results, treatment notes, etc. as they become available at the various offices, hospitals, or facilities where you receive treatment. It becomes more difficult and financially expensive to gather the information once it has gone into an archive and has been filed. It is best to obtain copies of these records as soon as possible after your visit. We suggest you request a copy while you are still in the office. At the end of your visit you should see the receptionist and request a "Release of Information" form. Inform the receptionist that you want a copy of the paperwork from your visit and would like it either sent to your home address or made available for pick up. When you fill out this form, you will be allowing the physician's office to release the information to you with your permission. (They have to have your permission to send it out to anyone...including yourself - yes...our eyes are rolling too.) Waiting too long to make this request will result in a fee for the retrieval and copying of your file.