Patient Bill of Rights for People with ALS

As a person living with ALS, you have a right to:

1. Receive comprehensive information about ALS, including options and resources for your health care needs.
2. Participate in decisions about your health care with the highest level of decision-making that is medically and financially possible.
3. Receive ALS specialty care in a timely manner.
4. Receive health care that is coordinated and individualized for you across the spectrum of home, hospice, hospital, nursing home, outpatient, and workplace.
5. Access health care benefit coverage and life insurance coverage without discrimination based on your ALS diagnosis or physical disability.
6. Obtain clear, timely information regarding your health plan including benefits, exclusions and appeal procedures.
7. Review your medical records and have the information in your records explained to you.
8. Prepare an advance directive to state your wishes regarding emergency and end-of-life treatment choices.
9. Receive care that is considerate, respects your dignity and holds information confidential. You have this right no matter what choices you make about treatments and therapy, what your disabilities related to ALS might be or what your financial circumstances are.
10. Receive maximum support to enhance the quality of your life.