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Rehabilitation Institute of Chicago: LIFE Center
Rehabilitation Institute of Chicago: LIFE Center

Being Your Own Advocate

Living with a Disability or Chronic Illness

Reviewed June 2016
Author: Paula L. Thomas , RN
Care Manager
Rehabilitation Institute of Chicago
Life is a partnership with others. This is true for everyone, whether living with a disability or not. Learning to be your own advocate is an important step in coping with a chronic illness or disability – empowering you to get your needs met. Feeling a sense of empowerment happens in many ways. Here are some tips to begin:

•Keep a Personal Health Record – a written health history with dates, physician names and phone numbers, diagnoses and treatments provided.
•Learn your rights under the Americans with Disabilities Act (ADA).
•Understand how your health plan works whether HMO, PPO, POS, etc. including coverage gaps and potential out of pocket costs. Make sure you have a copy of your benefit handbook or know how to access online.
•Learn how long private insurance benefits continue if you do not return to work.
•Consider naming a Health Care Power of Attorney.
•Learn to work with your health care providers as a partner.
•Be knowledgeable about your disability and physical care needs.
•Don't be intimidated – you know your body. If you feel that there is a change in your health that needs medical attention, contact your health care provider. If you don't feel issues are being addressed, discuss this with your provider.

The health care environment is fast paced and appointments are often short. Here are suggestions for ways to maximize time with your provider:
•State your priorities for the visit and what information you want to discuss.
•Develop a question list and forward to the provider ahead of time if possible.
•Take notes or have another person take notes during discussions.
•Be brief and to the point in your communications with providers.
•Present a concise health history and only include relevant information that pertains to your disability or reason for seeking medical treatment.
•Summarize and repeat provider information to confirm understanding.
•Follow up by obtaining test results.
•Get a second opinion if necessary.
•Call before your office visit to find out if the provider is running on time.
•Call to determine building accessibility before appointments.

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