Resources & information
Resources and information for patients and caregivers
Search the sections below for additional information and other resources for patients, their relatives, and caregivers. Get a list of helpful websites and patient checklists, and find out how to file a complaint about your quality of care.
- Learn about Medicare's coverage of inpatient hospital services
- Learn about Medicare's coverage of outpatient hospital services
- Guide to Choosing a Hospital (PDF)
- View providers and suppliers that are terminated or are at risk for termination from Medicare
- View hospital survey inspection results
- View patients' experiences of care at ambulatory surgical centers and hospital outpatient departments
- Learn how to file a complaint about your quality of care
- Get information on inpatient psychiatric hospital and inpatient psychiatric unit services
- Guide to choosing a nursing home
- Guide to living in a nursing home
- Learn about Medicare's coverage of nursing home and skilled nursing care
- View providers and suppliers that are terminated or are at risk for termination from Medicare
- View a list of nursing homes that have a history of poor care and may need increased oversight and enforcement (PDF)
- Find a Long-Term Care Ombudsman in your state or territory. Long-term care Ombudsmen solve problems between residents and nursing homes, as well as assisted living facilities.
Nursing home resident rights
Nursing home residents have certain rights and protections under the law. The nursing home must list and give all new residents a copy of these rights.
These resident rights include, but aren't limited to:
- The right to be treated with dignity and respect.
- The right to be informed in writing about services and fees before you enter the nursing home and during your stay.
- The right to manage your own money or to choose someone else you trust to do this for you.
- The right to privacy, and to keep and use your personal belongings and property as long as it doesn't interfere with the rights, health, or safety of others.
- The right to be informed about your medical condition, medications, and to see your own doctor. You also have the right to refuse medications and treatments.
- The right to have a choice over your schedule (for example, when you get up and go to sleep), your activities and other preferences that are important to you.
- The right to receive visitors of your choice and at your preferred time as long as it doesn’t interfere with the rights of others.
- The right to an environment more like a home that maximizes your comfort and provides you with assistance to be as independent as possible.
- The right to decline to enter into binding arbitration agreements. Arbitration agreements make it so you can’t hold your nursing home accountable in court for any potential negligence or wrongdoing
- The right to decline that a third party, like your family, be responsible for paying your nursing home bill
Learn how to file a complaint and find state agency contacts
When should I file a complaint?
You should file a complaint if you're concerned about the health care, treatment, or services that you or another person got or didn't get in the nursing home. Some reasons for filing a complaint would be abuse, neglect, poor care, not enough staff, unsafe or unsanitary conditions, dietary problems, or mistreatment.
How do I file a complaint?
You may file a complaint with your State Survey Agency in a number of ways including mail, telephone, fax, on-line, or in person. The State Survey Agency is responsible for regulating all the nursing homes in the state.
Some states have online complaint forms available (see the table below). If your state doesn't have its own complaint form, you may use this template (PDF) form to make sure you have all the information you need. You don't need to use this template or limit your information to what's on the template.
State websites with nursing home information
State websites can be a good resource if you have questions specific to your state, like state laws, benefits, or licensing. You may also choose to call them with a concern or complaint about the quality of care you or your family member gets from a nursing home, if you're not satisfied with the response from your nursing home.
You can review the chart below to find the phone number for your state-level contacts.
State information
Warning:
Swipe or scroll to see the entire table
| State | Phone and fax numbers | File a complaint electronically |
|---|---|---|
| Alabama | Phone: (800) 356-9596 Fax: (334) 206-5161 | File a complaint with Alabama |
| Alaska | Phone: (800) 478-9996 (outside Anchorage) File a complaint: (907) 334-2483 | File a complaint with Alaska |
| Arizona | Phone: (602) 324-2690 Fax: (602) 364-0993 Tucson, AZ Phone: (520) 628-6965 Fax: (520) 628-6991 | File a complaint with Arizona |
| Arkansas | Phone: (800) 582-4887 Fax: (501) 682-8540 | File a complaint with Arkansas |
| California | Phone: (800) 236-9747 Alt phone: (916) 558-1784 Fax: (916) 263-5840 | File a complaint with California |
Helpful websites and publications
- Area agencies on aging (AAA) & Aging and Disability Resource Centers (ADRCs) - AAAs assist adults age 50 and older and their caregivers. ADRCs assist people with disabilities of all incomes and ages and their families. Forty-seven states have ADRCs. Call the ElderCare Locator at 1-800-677-1116 weekdays from 9:00 a.m. to 8:00 p.m. (EST).
- Centers for Independent Living (CILs) assist people with disabilities of all incomes and ages with focus on consumer control. Note that many AAAs and CILs are ADRCs.
- Centers for Medicare & Medicaid Services (CMS) provides information about Medicare coverage, Medicare health plans, Medicare quality initiatives and free publications. The Medicare Helpline: 1-800-MEDICARE (1-800-633-4227) TTY: 1-877-486-2048.
- Find your state Medical Assistance Office. Your State Medical Assistance Office can give you information about state programs that help pay health and nursing home costs, as well as services in the community, for people with low incomes and limited resources.
- Find the phone number for your state through the link above. You can also call 1-800- MEDICARE (1-800-633-4227). TTY users should call 1-877-486-2048.
- Guide to Choosing a Nursing Home from CMS gives detailed information about choosing a nursing home, including a nursing home checklist.
- Medicare & You Handbook (PDF) gives a summary of Medicare benefits, rights and protections, and answers to the most frequently asked questions about Medicare.
- Medicare Coverage of Skilled Nursing Facility Care (PDF) gives detailed information about Medicare covered skilled care, including your rights and protections and where to get help with questions.
- National Center for Assisted Living has information to help people make decisions about nursing and assisted living facilities.
- National Consumer Voice for Quality Long Term Care represents consumers in issues related to long-term care, helping to ensure that consumers are empowered to advocate for themselves. They are a source of information and tools for consumers, families, caregivers, advocates and ombudsmen to help ensure quality care for residents. View their Consumer Guide to Choosing a Nursing Home (PDF).
- Nursing Home Quality Initiative is a CMS program that provides consumer and provider information regarding the quality of care in nursing homes.
- Quality Improvement Organizations (QIOs) assist nursing home residents and family members understand nursing home quality. A QIO is a group of practicing doctors and other health care experts paid by the federal government to check and improve the care given to people with Medicare. QIOs are available to help beneficiaries who have questions about how to use the quality information in selecting a nursing home.
- Skilled Nursing Facility Quality Reporting Program The IMPACT Act of 2014 requires that CMS develop and implement quality measures from 5 quality measure domains using standardized assessment data. The Act also requires the development and reporting of measures pertaining to resource use, hospitalization, and discharge to the community.
- State Technology Assistance Project has information on medical equipment and other assistive technology. Get the contact information for your state through the link or call (703) 524-6686.
Helpful home health contacts
- Administration on Aging - The Administration on Aging promotes the well-being of older individuals by providing services and programs designed to help them live independently in their homes and communities. This website provides resources to connect people with disabilities, older adults, caregivers, families, and professionals to important federal, national, and local programs and information.
- Find out more information about senior services in your community - The Eldercare Locator, a public service of the Administration on Aging, U.S. Department of Health and Human Services, is a nationwide service that helps older adults and families find information on senior services offered in their community.
- Alzheimer's Association - The Alzheimer's Association provides information about day-to-day help and services in the community for those affected by Alzheimer's and other dementias. This website also includes a section designated to caregivers, the Care Center. The Care Center offers information on topics such as; stages and behaviors of the disease, getting support, safety, care options, and financial and legal planning.
- Learn about Medicare's coverage of hospice services
- Questions to ask when choosing a Hospice (PDF)
- Learn how to file a complaint about your quality of care
- Learn more about patient-level data collection through the Hospice Item Set (HIS).
- Learn more about the Consumer Assessment of Healthcare Providers & Systems (CAHPS®) Hospice survey.
- View providers and suppliers that are terminated or are at risk for termination from Medicare
- Learn about Medicare's coverage of dialysis services and supplies
- Patient checklist for choosing a dialysis center (PDF)
As a person with kidney disease, you have certain rights and responsibilities. When you go to a treatment center, ask for a copy of your rights and responsibilities. This will help you know what to expect from your health care team and what they can expect from you. Your center's list should include much of the following.
Your rights
- I have the right to be told about my rights and responsibilities.
- I have the right to be treated with respect.
- I have the right to privacy. My medical records can't be shared with anyone, unless I say so.
- I have the right to meet with my whole health care team to plan my treatment.
- I have the right to see the dietitian for help with food planning and the social worker for counseling.
- I have the right to be told about my health in a way that I understand.
- I have the right to be told about and to choose my treatment options.
- I have the right to be told about any tests ordered for me and the test results.
- I have the right to be told about the services offered at the center.
- I have the right to be told about the process of dialysis and dialyzer re-use.
- I have the right to be told about any expenses that I have to pay for if they're not covered by insurance or Medicare.
- I have the right to be told about any financial help available to me.
- I have the right to accept or refuse any treatment or medicine my doctor orders for me.
- I have the right to be told about the rules at the treatment center (for example, rules for visitors, eating, personal conduct).
- I have the right to choose if I want to be part of any research studies.
Your responsibilities
- I need to treat other patients and staff as I would like to be treated, with respect.
- I need to pay my bills on time. If this is hard for me, I can ask about a payment plan.
- I need to tell my health care team if I refuse any treatment or medicine that my doctor has ordered for me.
- I need to tell my health care team if I don't understand my medical condition or treatment plan.
- I need to be on time for my treatments or when I see my doctor.
- I need to tell the staff at the center if I know that I'm going to be late or miss a treatment or visit with my doctor.
- I need to tell my health care team if I have medical problems, am going to the dentist, am being treated by another doctor, or have recently been to the hospital.
- I need to follow the rules of the center.
- I need to get to and from the center for my treatments. I can talk with my social worker if I need help doing this. Medicare doesn't pay for transportation.
Information about kidney disease, dialysis, and management
- American Association of Kidney Patients (AAKP) is a national non-profit organization founded by kidney patients for kidney patients. AAKP's goal is to help people with chronic kidney disease (CKD), those on hemodialysis and peritoneal dialysis, and transplant recipients learn how to improve their health and well-being.
- The American Kidney Fund (AKF) provides kidney disease facts and figures. AKF offers information and programs, including discount pharmacy cards and other medication programs, information on grants, minority outreach, educational materials, a helpline, and disaster relief for patients.
- Dialysis Patient Citizens (DPC) is a non-profit, patient-led dialysis organization open only to dialysis and pre-dialysis patients and their families. DPC is working to improve the quality of life for all dialysis patients through education and advocacy.
- Home Dialysis Central helps people with kidney disease learn about daily, nighttime, or conventional home hemodialysis. You can look at home dialysis equipment and other dialysis products, and find clinics that support home treatments. HDC can help you talk to other home dialysis patients, read patient stories, and locate helpful tools.
- The Life Options Rehabilitation Program is dedicated to helping people live long and live well with kidney disease. Read or download facts about kidney disease, risk factors, symptoms, frequently asked questions, and how to keep your kidneys healthy.
- The Kidney School can help people with kidney disease learn what to expect and how to be an active partner in their care with Kidney School's 30-minute on-line learning modules. Topics include how kidneys work, treatments, anemia, coping, staying active, vascular access, and more.
- The Kidney & Urology Foundation of America (KUFA) is a large nonprofit health organization supported by volunteers dedicated to developing and supporting programs that improve the lives of those suffering from kidney and urologic diseases and those who wait for organ or tissue transplants.
- The National Family Caregiver Support Program (NFCSP) is a government website that connects caregivers with local support services that can help you care for your loved one at home for as long as possible. Download brochures, read real-life caregiver stories, and find links to help caregivers maintain their own health while caring for another.
- National Kidney Foundation (NKF) is a voluntary non-profit health organization with information about preventing kidney and urinary tract diseases, improving the health and well-being of people and families affected by kidney disease and increasing the availability of all organs for transplantation.
- The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) is a National Institutes of Health website that can help you learn about the causes and types of kidney disease, treatment choices, and how to stay healthy. Get information on clinical trials, data, links, and brochures.
- The ESRD Patient Reported Outcomes (PRO) Focus Group Summary Report (PDF) summarizes the feedback received from both patient and provider specific focus groups on draft questions items for the patient reported patient safety and patient life goals.
- Get Medicare publications related to kidney disease, dialysis, and transplant.
Information on children with kidney disease
- NephKids offers a doctor-moderated email support group for parents of children or teens who have kidney disease. Get information on kidney disease in children and links to kidney disease resources.
- Children's Organ Transplant Association, Inc. (COTA) is for children who need a kidney or other organ transplant. The COTA can provide financial and fundraising help. Get newsletters, real-life patient stories, and their annual report.
Transplants and organ donation
- Learn about how to become an organ or tissue donor. Download an organ donor card, read transplant and donor stories, and get answers to common questions about organ donation on this website.
- On Transplant Living learn about what to expect before and after a transplant, get information about transplants in children, and learn about becoming an organ donor. You can also read stories of hope, get e-newsletters, and access transplant data.
- United Network for Organ Sharing (UNOS) is a private, non-profit organization that manages the nation's organ transplant system under contract with the federal government. Learn about transplant issues, get a glossary of transplant terms, view press releases and download resources.