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Become an Investigator

When it comes to tracking down the right help, the best sleuths have learned how to ask for services. So before you pick up the phone or visit that agency, make sure you can answer this question: What are you looking for — information, practical support, emotional support or financial assistance?

Now be specific about what you need, clearly describing your problem. Use assertive phrases like, “I think, I need, I would like, I feel.” But make sure to be polite and patient. Notes or questions prepared in advance will help you cover every point. Or write a script to use when making calls. You can even enlist a support person to listen in and jot notes down for you.

Here are a handful of other tips for a successful investigation:

  • Find or ask for a case manager. Establish one contact within your hospital, insurance company or public agency. When this person becomes familiar with you and your case, you are likely to have an ally who will add to your voice.

  • Outsmart the system. Most agencies have an appeal process — so plan to use it. Keep meticulous records, find alternatives, talk to supervisors and get confirmation. It may seem labor-intensive, but the appeal shows you’re serious, committed and justified to have your case re-examined.

  • Learn how to follow up. Keep a detailed log of your phone calls, including the name of the person you talked to, the date and time of the call, the outcome and any follow-up required. Above all, be persistent.

  • Stay organized. Maintain a file of scanned or photocopied applications, income tax statements and other important paperwork in a designated place. Also keep your emails in tidy electronic folders and archive emails when they become irrelevant.

  • Don’t give up. Norman Vincent Peale says, “It’s always too early to quit.” When you hit a roadblock, try another person within the organization. If you encounter a closed door, try another organization. It takes initiative to be persistent.

  • Keep your cool. It’s normal to get frustrated when you are stuck on hold, get disconnected or receive unsatisfactory service. But anger isn’t a good starting point when expressing your needs. Take a deep breath and re-check your perspective. Having CF gives us access to resources that are a privilege — not an entitlement.

  • Protect your rights. If you think you’ve been wronged, discuss your concerns with a lawyer by contacting the CF Legal Information Hotline at 800-622-0385. You may also want to file a grievance with your state if appropriate.

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Updated 8/28/13

The Cystic Fibrosis Foundation is an accredited charity of the Better Business Bureau.