Patients are encouraged to discuss necessary workplace accommodations openly with employers in order to be able to continue to work as long as possible. If you can perform the essential functions of your job, even if you require reasonable accommodations, your employer cannot discriminate against you with respect to your wages, hours, terms and conditions of employment. You have the right to access health care benefit coverage without discrimination based on your ALS diagnosis or physical disability. 5 People with ALS who are eligible for health plan coverage under the plan's terms and conditions, must not be discriminated against in enrollment practices or in the delivery of health care services based on disability. You have the right to obtain clear, timely information regarding your health plan including benefits, exclusions and appeal procedures.
Patients have a right to a full and fair review of their benefit claims.
You have the right to access your medical records and have the information in your records explained to you. People with ALS have the right to request and receive a copy of their medical records and to have the information in their records explained or interpreted in lay language. An advance directive is a document allowing a person to give directions about future medical care or to designate another person to make medical decisions if the individual loses decision-making capacity. Advance directives may include living wills, durable powers of attorney, right to die, or similar documents expressing the individual's preferences as specified in the 1990 Patient Self-Determination Act. People living with ALS have the right to make advance directives concerning treatment with the expectation that the directives will be honored by health care providers.