Know your rights: Nursing Home Quality Reform Act created a Bill of Rights for those in long-term care
This photo illustration shows a copy of nursing home residents rights, which were established in 1987 by an act of Congress. (Kevin G. Gilbert / / May 1, 2013)
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."