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 The ALS Association's Patient Bill of Rights - Resources

You can read the Patient Bill of Rights in full or download it as a pdf. The introduction outlines ALSA's reasons for preparing this Bill of Rights.

ALS patients and families can call or write to the following organizations and agencies for assistance if they encounter a problem obtaining one or more rights that are protected by law or regulation. It may be best, initially, to contact the chapter, your support group, physician or hospital. We encourage you to try to resolve problems first with the person or organization involved in the issue.

1. Your ALS physician, clinic, and/or hospital. In most cases, clinics and hospitals have offices of patient relations that can provide information and assistance.

2. The local chapter or support group of The ALS Association.

3. The National Office of The ALS Association (800) 782-4747.

4. Ombudsman. Your state's Department of Health Facilities. This is generally the state's licensing and regulatory agency for all health facilities and for consumer complaints.
Kansas State Long-Term Care Ombudsman
Missouri Long Term Care Ombudsman
Nebraska Long-term Care Ombudsman

5. If your problem relates to a health insurance company, contact your state's Department of Corporations (Consumer Complaints Division).
Kansas Attorney General's Office - Consumer Protection Anti-trust Division
Missouri Attorney General's Office - Consumer Protection Division
Nebraska Department of Justice - Consumer Complaint Form

6. If your problem relates to mental health issues, contact your state's Department of Mental Health (Consumer Complaints Division).
Kansas Department of Health & Environment - Division of Health
Missouri Department of Mental Health

Nebraska Department of Health and Human Services

7. For problems regarding disability rights, contact the Americans with Disabilities Act Information Line at the Department of Justice (800) 514-0301 or (800) 514-0383 TDD, or online at www.usdoj.gov
Kansas Attorney General's Office
Missouri Attorney General's Office
Nebraska Attorney General's Office

8. For problems regarding regulations and healthcare accreditation, contact The Joint Commission on the Accreditation of Healthcare Organizations (800) 994-6610, or online at www.jcaho.org

9. Each of the eleven rights has been referenced with existing law, regulation or standard-setting agency that supports or reinforces the Bill of Rights for People with ALS. This table indicates the reference(s) associated with each right.

Right American Hospital Association Joint Commission on Accreditation of Health Organizations Medicare National Health Council's "Putting Patients First" Americans with Disabilities Act Employee Retirement Income Security Act Patient Self-Determination Act of 1990
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