Tips for Getting Answers to Your Questions

Many parents say information helps them feel more confident in caring for their child. We have compiled some tips from other parents who have children with special needs. Partner with your doctor and other health professionals to develop a plan to meet your child’s needs. Communicate clearly so that everyone understands your child’s needs and the plan.

Keep Trying:
“It’s about not giving up and about asking a lot of questions. Persistence is the word I use. Pushy, sometimes yes. But persistence is really it because you don’t have to be pushy, you just have to not give up.” 

When contacting potential resources:

• Keep calling and keep asking questions.
• Ask for names and phone numbers or e-mails of other people to contact.
• If the recorded voice on the phone is confusing, often you can just stay on the line. Then you can talk with a person.
• Written requests or e-mail may get a prompt response.

Keep Notes:
“Get organized. Write down when you called, who you talked with, and what the conversation was about. You’re going to need to go back to that at some point - you’re not going to be able to remember it all.

Be sure to keep track of:

• Who you talked with, the name of the organization, the phone number, e-mail and the date of the call.
• The information you were given.
• What you and what they agreed to - and by what date.
• Their ideas about other people to contact.
• Ask for a business card. Write down the time and day of your contact and what was done.
• Fax, mail, or e-mail your questions to your doctor before your appointment.
• Use the Care Notebook or Care Organizer to help you collect and organize notes and papers.

Educate Yourself:
“Families need to educate themselves about all aspects of their child’s disease.”

• Get information from your doctors, the library, other parents, or the internet.
• Make sure the information you receive is correct and up to date. Ask your doctor or health care provider about the information you find.

Learn the Language:
“I didn’t even have the right words to know how to ask. You need to know the proper words to use to get the right care and services for your child.”

Give this key information when you make a call or contact:

• Your child’s age.
• Your child’s diagnosis (if one has been made) or your main concern.
• Where you live (city, county).

Listen to the words others use when talking with you:

• Ask about any word you don’t understand.
• Write the word down and what it means (have them spell it out).
• Use these words when you talk to others.