For most people, home means familiar faces, rooms filled with years of memories and a measure of control over one's life.
But for many older adults, home is confined to four walls in an institutional setting, where you learn to navigate a wheelchair along crowded hallways, try to sleep through night checks and become attuned to the emotions and habits of fellow residents.
Placing a loved one in a nursing home is one of the most difficult decisions anyone will ever make. It's not always a choice. It's often a necessity for a parent, a spouse, a loved one who needs the type of care that assisted living or home health services simply can't provide.
With research and perseverance, families try to make the transition as easy as possible by selecting a nursing home with a safe and pleasant environment, a caring, professional staff and top-notch medical practices.
Most importantly, however, they want their loved ones to be protected during the most vulnerable period of their lives. They want them to be free from abuse and neglect. They want them to have a say in their day-to-day care, preferences and needs. And they want them to be able to live their golden years with dignity.
Many people fear nursing homes because of preconceived notions, according to a study by AARP. They feel there will be a loss of freedom and comfort. They have concerns about the quality of care and possible abuse. They worry they will become neglected — just another face in a sea of faces.
But in 1987, long-time efforts of consumer groups helped alleviate some of those fears when Congress passed the Nursing Home Quality Reform Act, which established tougher Federal standards and a Residents Bill of Rights.
The Reform Act expanded the authority of the Department of Health and Human Services, as well as individual states, to discipline nursing homes for offenses, which, according to the Maryland Legal Aid Bureau, can cost the facility up to $10,000 per incident in fines.
It also set the first federal standards for training nurses' aides, as well as for staffing by licensed and registered nurses.
Above all, the act made clear that residence in a nursing home is not synonymous with a loss of autonomy.
It guarantees a patient's rights in a wide range of areas — from privacy and confidentiality to being able to voice grievances and having a say in their own medical care.
In Maryland, these rights are regulated under Code of Maryland Regulations or COMAR, 10.07.09 titled Residents Bill of Rights: Comprehensive Care Facilities and Extended Care Facilities, said Lynn Smith, ombudsman for the Washington County Commission on Aging.
"I can't speak for other states (as to whether the rights differ), but all (Maryland) nursing homes must meet Federal residents' rights requirements if they participate in Medicare or Medicaid," Smith said.
Nursing homes are required to give residents a copy upon admission and the document should be posted in the nursing home, Smith noted.
For Deborah Roman of Hagerstown, reviewing the Bill of Rights made her feel more at ease with the decision to move her 84-year-old mother from the house she had lived in for 50 years to a local nursing home.
"It was an emotional roller coaster, up and down, up and down, trying to come to grips with the fact that she needed more round-the-clock attention than she was receiving living on her own," Roman said. "And even though the family selected a place that we are extremely happy with — and that includes my mother — there are always concerns. Is she being treated with kindness and respect? Does she have a say in her day-to-day activities or whether she wants to take a particular medicine? Knowing a loved one has some protection alleviates a lot of fears."
Gregory Dorazo said the care his 87-year-old mother has received at an area nursing home "has been outstanding."
But there were little things, over the years, that bothered her.
"She didn't realize she and other residents could form a reading club and she wanted family members to be included in more in-house activities," the Hagerstown man said. "By being reminded of her rights, she realized she had a voice to make those changes. It's made her a happier person."
The complete Bill of Rights is available online at the Maryland Health Care Commission's Consumer Guide to Long Term Care. It can be found at mhcc.maryland.gov/consumerinfo/longtermcare/GeneralResources.aspx. See boxed information for an example.
Smith said all nursing home residents, regardless of whether a power of attorney is involved, have the right to file a complaint.
If you think your rights have been violated, there are several ways to receive assistance. One is a long-term care ombudsman, a free advocate for residents, who will try to help individuals resolve their concerns, according to Smith.
The Washington County Commission on Aging has an ombudsman for both nursing homes and assisted living facilities, Smith said.
"If there is a grievance, an ombudsman will encourage the resident and family to be empowered and attempt to resolve an issue on their own by speaking to the nursing home's social worker or administrator," Smith said. "If one wishes to remain anonymous or if a resident wants assistance, an ombudsman — if consent is given by the resident or power of attorney — can attempt to resolve the complaint."
Smith said resolving complaints "is resident driven, so sometimes what a family member considers an issue might not be an issue for the resident. Consent to advocate on an individual's behalf must be obtained. However, an ombudsman can be involved, without a particular resident's consent, if an issue is facility wide, such as food, no hot water, etc."
Residents also can contact the Office of Health Care Quality, which is the licensing agency in Maryland.
"They conduct annual surveys, as well as complaint investigations," Smith said. "Both the ombudsman and OHCQ phone numbers are posted in a public area at nursing facilities."
According to the Maryland Legal Aid Bureau, in addition to contacting an ombudsman, grievances can be filed with the nursing home administrator. Nursing homes must have a procedure for grievances or complaints. The nursing home must respond to the complaint within 30 days.
Abuse or fraud can be reported to the Maryland Attorney General's office, Medicaid Fraud Division, which focuses on resident abuse, fraud and waste in nursing homes. If you have a concern about resident abuse, call 410-576-6521. If you want to report fraud, waste or abuse, contact the Department of Health and Mental Hygiene, Office of the Inspector General's Hotline at 866-770-7175.
More information also is available by going to the website for the National Consumer Voice for Quality Long Term Care at www.theconsumervoice.org.
Some of the basic rights advocated by the National Consumer Voice for Quality Long Term Care include:
A. The right to be fully informed of:
Available services and charges
Facility rules and regulations
State survey reports and the nursing home's plan of correction
Advance plans of a change in rooms or roommates
B. The right to complain
To present grievances to staff or any other person without fear of reprisal and with prompt efforts by the facility to resolve those grievances
To complain to the facility's ombudsman program
To file a complaint with the state survey and certification agency
C. The right to participate in one's own care
Receive adequate and appropriate care
Be informed of all changes in medical condition
Participate in their own assessment, care planning, treatment and discharge
Refuse medication and treatment
Refuse chemical and physical restraints
Review one's medical records
Be free from charge for services covered by Medicaid or Medicare
D. Right to privacy and confidentiality
Private and unrestricted communication with any person of their choice
During treatment and care of one's personal needs
Regarding medical, personal or financial affairs
E. Rights during transfers and discharges
Remain in the nursing facility unless a transfer or discharge is necessary to meet the resident's welfare; is appropriate because the resident's health has improved; is needed to protect the health and safety of other residents or staff; is required because the resident has failed, after reasonable notice, to pay the facility charge for an item or service provided at the resident's request; receive 30-day notice of transfer or discharge which includes the reason, effective date, location to which the resident is transferred or discharged; the right to appeal and the name, address and telephone number of the state long-term care ombudsman; and safe transfer or discharge through sufficient preparation by the nursing home
F. Right to dignity, respect and freedom
To be treated with consideration, respect and dignity
To be free from mental, physical and sexual abuse, corporal punishment, involuntary seclusion and physical and chemical restraints
Security of possessions
G. Right to visits
By a resident's personal physician and representatives from the state survey agency and ombudsman programs
By relatives, friends and others of the residents' choosing
By organizations or individuals providing health, social, legal or other services
Residents have to right to refuse visitors
H. The right to make independent choices
Make personal decisions, such as what to wear and how to spend free time
Reasonable accommodation of one's needs and preferences
Choose a physician
Participate in community activities, both inside and outside the nursing home
Organize and participate in a resident council
Manage one's own financial affairs
According to Lynn Smith, ombudsman for the Washington County Commission on Aging, the most common grievances in Maryland are:
2. Care plan/resident assessment
3. Dignity, respect and staff attitudes
4. Accident or injury of unknown origin
5. Failure to respond to requests for assistance
6. Medications — administration and organization
7. Personal hygiene
8. Exercise preference/choice
9. Symptoms unattended, including pain