Tips for Affected Adults 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. Social Security Disability Insurance and Medicare – Adults with disabilities are eligible for Medicare 24 months after receiving Social Security Disability Insurance (SSDI). Therefore, to maximize benefits, apply for SSDI as soon as you anticipate the disease has progressed to the point that your ability to work is compromised.
To learn more about SSDI and other Social Security benefits visit: http://www.ssa.gov/disability/.

3. Finding the Right Doctor – Adults affected by chronic forms of the allied diseases are cared for by a variety of doctors including, but not limited to, physicians, neurologists, gastroenterologists, pulmonologists, orthopedists, psychiatrists. 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 another person with your same diagnosis. When this occurs, NTSAD recommends finding a physician or specialist you feel comfortable with and is willing to consult with members of NTSAD’s Sciencitic Advisory Committee to ensure the best possible care.

It is important that you:

  • feel comfortable with the doctor and his or her staff,
  • can communicate your questions and concerns, and
  • feel supported in your efforts to manage the disease.

You also need to feel confident the healthcare team is a partner in your advocacy efforts with insurance companies and, when appropriate, the work or housing environment. 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 healthcare insurance coverage offered by your current policy. You will be in a far better position to advocate for yourself 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, 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.

A wonderful resource dedicated to understanding and navigating Medicare benefits is Medicare Interactive (MI), a one-stop source for information about health care rights, options and benefits. Brought to you by the Medicare Rights Center, a national not-for-profit, consumer service organization, dedicated to ensuring that older adults and people with disabilities get good affordable health care.