Self-Advocacy: Being a Good Medical Consumer

You Know Your Body Best

• You are not your disability, and many health problems have nothing to do with your disability!
• Your personal history
• Medical – disability-related and not
• Social – smoking, smoking, alcohol, nonprescription or street drugs, sex, etc.
• Your family health history
• Heart disease, cancer, diabetes, mental health, addictions, etc.

You Employ the Doctor:  You’re the Boss

• You have the right to respectful, considerate treatment.
• You have the right to ask questions and to receive meaningful responses.
• You have the right to a complete physical exam, including (for women) routine gynecological exams and mammograms, and men, prostate exams.
• You have the right to have all exams conducted on tables and using equipment and techniques appropriate to your disability and respectful of your physical and emotional self.
• You have the right to have an interpreter present.
• You have the right to have your service animal present.
• You have the right to a second medical opinion.
• You have the right to change physicians.
• You have the right to educate your healthcare professional! Print out a copy or two (or three …) of How to Make Your Practice More Accessible (developed by the Kansas University Research & Training Institute on Independent Living and shared by the Association of Programs in Rural Independent Living); read it and give a copy to your provider.

Help Your Healthcare Provider Give You the Best Care

• Know what medications you are taking, what dosage, and why.
• Ask about medication interactions.
• Ask about medication side effects.
• Ask your provider what you can do to optimize your state of wellness:
• How do diet and exercise affect me?
• What can I do – or do differently – to enhance my good health?
• What vitamins or supplements might help?
• What exams should every woman/man my age have?
• What immunizations do I need?
• I’d like to stop smoking, but don’t know how.
• I, uh, like to party.  A lot.  Maybe too much. . . .
  • Want help or need a referral?  Your provider is ready and willing to help!
• When you are scheduling the appointment, specify what you will need at the provider’s office to facilitate a meaningful appointment.
• If you have health insurance, ask if the provider is a member of your plan.  If you are on Medicare or Medicaid, ask if the provider’s office accepts these.  Would the office be open to working out a payment plan, if necessary?
• What paperwork will need to be completed? Would it be possible to complete it ahead of time? If it must be completed at the time of the appointment, would there be a staffer available. if desired, to help you complete it in a private space?
• If you are deaf, request an interpreter.
  • Ask the provider if they could notify you ahead of time if the office is running late: you do not want to be in the middle of your delayed appointment and have your interpreter leave for another commitment!
• If English is not your native language and you are not comfortable presenting your case in English, request an interpreter.
• If you have a mobility impairment, ask about:
  • Building access - where is the accessible entrance, and where is it in relation to the parking lot or drop-off zone?
• Does the building have level entry, automatic doors and a working elevator?
• Is the office itself accessible? How does the door open? Is there a doorbell or alert?
• How wide is the doorway? Does the office have an accessible exam table? What about the laboratory and radiology areas?
• Are medical staff properly trained in transfer techniques?

• Describe your complaint – why you’re there, even if for a routine exam – as thoroughly as possible:
• When did it start?
• What were you doing when it started?
• If you are having pain, does the pain come and go, or is it constant?
• If you are having pain, how is it affecting your routine activities?
• What have you tried to alleviate your symptoms?

• If your doctor prescribes medication:
• Is it necessary?  What other medication or treatment options might be available – or necessary?
• What side-effects might it have?
• How might it interact with any other medications you’re taking?

• Ask questions!
• Understand what your provider is telling you – or not telling you.
• Ask your provider to discuss:
  • Your diagnosis and what it means
  • Sequellae or related conditions
• Ask about treatment options
  • In place of the one being recommended
  • In case the first one recommended doesn’t work or causes a (negative) reaction