Tips for Parents Navigating the System

Since insurance programs vary widely from one state to another, one insurance company to another and one country to another, this section provides only general recommendations.

1. Get Organized – Make a folder or notebook in which you keep all the information about your child. Many parents find it convenient to buy a three-inch/three-ring binder notebook and use dividers for the various sections of assessment, treatment, school, therapy and correspondence. The following information should be kept in the notebook.

Where the evaluation/assessment was done, where diagnosis was made
Names and contact information of doctors
Informative hand-outs
Supportive resources
Pertinent phone numbers and addresses
Copies of assessment reports, diagnostic and imaging tests laboratory reports
and medications taken

When the notebook is full, write the date on the cover and start another notebook. These notebooks will make it possible for you to look up information about your child. Take the notebooks with you to every appointment and keep them up-to-date.

2. Medicaid Waiver – Children affected by the juvenile and infantile forms of the allied diseases are eligible for Medicaid. Typically, Medicaid requires a waiting period, but because of the acute progression of the disease children are eligible for a ‘Medicaid Waiver’ that will allow coverage to start immediately.
To learn how to apply in your state call toll-free (877) 267-2323
or visit: http://www.cms.hhs.gov/medicaid/waivers/waivermap.asp.

3. Finding the Right Doctor for Your Child – Babies and children affected by infantile and juvenile forms of the allied diseases are cared for by a variety of doctors including, but not limited to, pediatricians, neurologists, gastroenterologists and pulmonologists. Due to the rarity of the allied diseases it is very possible there may not be healthcare professionals close to you who have ever treated someone with your child’d diagnosis before. When this occurs, NTSAD recommends finding a pediatrican or specialist that you feel comfortable with and who is willing to consult with members of NTSAD’s Sciencitic Advisory Committee to ensure the best possible care.

It is important that you and your child are:

comfortable with the doctor and his/her staff,
able to communicate your questions and concerns, and
feeling supported in your efforts to manage the disease.

You also need to feel confident that the healthcare team is a partner in your advocacy efforts with insurance companies and, when appropriate, the school system. The relationship with the doctor is a critical component of the coping and adaptation process, particularly for allied diseases for which there are no sure-fire answers and a wide range of severity and symptoms.

4. Understand your policy – Familiarize yourself with the coverage offered by your current insurance policy. You will be in a far better position to advocate for your child if you have spent time getting to know the basic elements of your plan, including:

Eligibility requirements (who is covered under what circumstances)
Benefits (which services/treatments are specifically included or excluded and what are the limits on the coverage provided)
Regulatory information (who is responsible for enforcing the provisions of the plan, and to whom would appeals be addressed if needed)
Grievance procedures (what is the grievance/appeal process)

5. Other Resources – There are a variety of resources available to help you navigate
the challenges relating to insurance, including your state's insurance commissioner's office
www.patientrights.com/links/links7.htm, and Georgetown University maintain a website that describes health insurance options in each state www.healthinsuranceinfo.net, and http://www.disabilitysecrets.com/ which provides a detailed overview of how the federal disability system works (social security disability and SSI) and also provides answers to many questions that applicants typically have, but often have finding answers to.