A Selection of Viewpoints about the Rights of Older Minnesotans
From the Rights Stuff Newsletter, July 2009
As Minnesotans grow older, many become vulnerable, dependent upon others—in nursing homes and as recipients of an array of social services—to meet their basic needs. Are they vulnerable to discrimination as well? In this edition of The Rights Stuff, we look beyond age bias to other, less-talked-about issues facing older Minnesotans, from discrimination based on religion to sexual orientation.
The issue is complex, and there are many voices that need to be heard. On these pages, we present a selection of viewpoints to help start a conversation about the rights of older Minnesotans to enjoy respect for their culture, religion and civil rights, as part of the care they will increasingly require.
Note: The information and interviews in this section appeared in the July 2009 edition of the Department of Human Rights newsletter, The Rights Stuff. The newsletter includes additional material related to this topic. The views expressed are those of the individuals interviewed and not necessarily those of the Minnesota Department of Human Rights.
Forum Links | ViewPoints
Introduction & Overview
Each time the home health aid comes to visit his apartment, an older gay male removes pictures of his partner from his bookshelf, fearing that if his caregiver knows he is gay, he may no longer get good care. In a nursing home, when it is time for an older Muslim patient to pray, his caregiver interrupts—he must take his scheduled medication, right now, the caregiver insists. In another nursing home, a resident from Ghana is unable to obtain the food that is appropriate for his culture. And in yet another nursing care facility, an older male who has developed a relationship with another male patient is beaten severely by a third, who cannot stand to see two men holding hands.
Discrimination happens. And when it happens to older Minnesotans who may be especially vulnerable for health or other reasons, there would appear to be plenty of laws, regulations and agencies to protect them. A Minnesota Patients’ Bill of Rights (MS 144.651) provides broadly for quality of life and appropriate care, and declares that a patient has the right "to every consideration of your privacy, individuality, and cultural identity as related to your social, religious, and psychological well-being." There is also a federal bill of rights, part of the Nursing Home Reform Act passed by Congress in 1987, that guarantees residents in nursing homes a number rights, including the right to voice grievances without discrimination or reprisal.
Then there is the Minnesota Human Rights Act (MHRA), which prohibits discrimination in public accommodations, public services, housing (and employment and other areas), and also applies to hospitals, nursing homes, assisted living facilities, home health care services—virtually any medical or social service a senior citizen could require. It is illegal under the MHRA to treat a patient adversely because of their religion, race, national origin, color, creed, sexual orientation, age, and other characteristic protected under the Act.
The Act is enforced by the Minnesota Department of Human Rights, which has the authority to investigate charges of discrimination in health care settings. Other state agencies with more specific responsibilities and ties to health care complaint investigations include the Office of Health Facility Complaints—part of the Minnesota Department of Health—and the Office of the Ombudsman for Long Term Care, a program of the Minnesota Board on Aging. There are other agencies that could also have a role in investigating civil rights complaints and/or advocating on behalf of vulnerable, older Minnesotans who face discrimination—because of their religion, national origin, sexual orientation or some other factor—in Minnesota’s nursing homes and other senior care facilities.
But while the abuse and neglect of seniors generates headlines and has the attention of policymakers and the public, rarely does an incident of illegal discrimination capture anyone’s attention—or result in a case that an agency can document and investigate.
There are stories and anecdotal examples of situations that would appear to violate the Human Rights Act, the Patients Bill of Rights and perhaps other laws and regulations. But cases? "I’ve been in this job for about 16 years and I can’t remember getting a complaint of discrimination against an older American," says Joann Da Silva, who is responsible for civil rights investigations and complaints in Department of Human Services (DHS) programs. Other agencies, including the Minnesota Department of Human Rights, experience a similar dearth of discrimination charges involving vulnerable older Minnesotans in health care settings.
That’s not because discrimination is not a problem in nursing homes and elsewhere, say advocates, who believe many seniors are too intimidated—and afraid of losing the care they have—to complain when their rights are violated.
A staff attorney for OutFront Minnesota, a GLBT (Gay, Lesbian, Bisexual and Transgender) advocacy organization, Phil Duran believes that fear is particularly acute among the older gay population. "If you’re sitting in a nursing home and you are feeling very vulnerable and dependent on these people, are you going to sit there in your hospital bed with tubes sticking out of your arms and say, "Hey, I’m gay, you need to treat me better?" asks Duran.
Even when discrimination is blatant, older GLBT people may not want to pursue a charge. "On some level, there is an expectation that they’re going to be discriminated against... frequently people in our community, for any number of reasons, are just willing to let it go," says Duran (see interview, page 14). "And I think older people are particularly susceptible to that kind of an approach."
When Muslims are treated by health care providers in a manner that is disrespectful to their religion and culture, they are also reluctant to raise their voices in objection. "Most people are afraid to complain, because they do not want to be singled out as troublemakers," says Owais Bayunus, President of the Islamic Center of Minnesota. "They are dependent upon their caregivers, and they are afraid they will be treated badly in some other way by those people about whom they are complaining. I think this is true when anyone is complaining about discrimination —he thinks twice, before he opens up his mouth."
The reason for treatment that appears religiously and culturally insensitive may not always be an intent to discriminate. Bayunus recalls visiting his mother, who had been in nursing home after suffering a paralyzing stroke, and being concerned about her treatment. "They would uncover her in front of other people who where there in the same room," he recalls. "I had asked many times that a sheet be used, or a curtain around the bed, so it would not be in front of everybody." But the fact that she was Muslim may have had nothing to do with the treatment to which he objected, Bayunus believes.. "It may not be because of Islam that they were not taking care. It may just be because people wanted to do the job quickly, that they did not care much about modesty and these things."
While patients regardless of religion may be uncomfortable with doctors who seem to have too little time, when health care is delivered in a hurry the consequences may be especially troubling for those from other cultures—whose elders, especially, may be unfamiliar with, and not necessary inclined to trust, western medicine. This can lead to unfortunate misunderstandings, says Barbara Greene, a consultant who has worked extensively with the Somali community in Minnesota.
"In a health care system where someone is watching the door, or they’re speaking to the patient or an interpreter, but one hand is on the doorknob and they are ready to leave—that’s really a strong indication that your provider has other priorities, and you’re really not being cared for well, or listened to," says Greene.
But still, they don’t complain. Or they haven’t, most of the time.
There are some who believe, however, that the tendency of some vulnerable older Minnesotans and their families to accept treatment that may violate their civil rights is about to change. There are a host of factors, which appear to be converging at the same time, that could eventually turn a trickle of discrimination complaints into a flood, some believe
Between now and 2030, Minnesota will see a profound increase in the number of people over 65, accompanied by an unprecedented demand for health and long term care as baby boomers retire. Minnesota’s elderly minority and immigrant population will also grow dramatically, as will their demand for services.
"This is the first generation that the family went to the nursing home," notes Sue Mua, Hmong Liaison for Galtier Health Care, which operates a program especially for Southeast Asian elders (see story page 12). Somali elders entering nursing homes and long-term care facilities also represent the first generation to do so. As it becomes more common for a Hmong or Somali elder to enter a nursing home, these cultures may be better able to navigate their way through our health care and social service system, and more inclined to raises questions if care is not culturally appropriate.
As for the GLBT community, as more members of the baby-boom generation begin to seek long-term care, they may well be a lot more assertive than those who now find themselves in a nursing home, often afraid to speak up about sexual orientation issues. For those who are GLBT, "there is a huge generational difference in terms of approach to their own lives and their own expectations," says Duran. "Many of the people who are currently GLBT senior citizens are people who came of age in the 50s or early 60s... where hiding was not merely a choice, but the only obvious choice. Later generations have obviously grown up with some very different expectations."
It is clear that we are in unchartered waters. By 2030, one out of every four Minnesotans will be over 65; and their diversity and their expectations will reflect the social and culture changes that began, arguably, in the sixties and led to a new understanding of civil rights, gay rights, elder and health care rights.
Sherilyn Moe, ombudsman specialist for the Office of Ombudsman for Long Term Care, suggests that as demographic changes find more people from more places—from Southeast Asia, Africa, or the Middle East—seeking long term-care, discrimination will become more of an issue. Ombudsman Cheryl Hennen notes that while caregivers are required to receive vulnerable adult training, "they are not mandated to receive training related to cultural diversity," a situation she believes should change, given "where we are in this time and place in our society."
And, especially, where we’re about to be. The senior boom has begun, as the first generations of baby boomers retire. They are likely to live longer than any previous generation, and by 2050, Minnesota will have the largest number of people ever over 85. A lot of them will eventually be in nursing homes or other senior care facilities—living next to people from other cultures, receiving care from people from other cultures and countries.
How will they all get along? How will health care providers and others ensure that Minnesotans of all cultures and persuasions will enjoy the right "to every consideration of your privacy, individuality, and cultural identity as related to your social, religious, and psychological well-being," as provided in the Patients’ Bill of Rights—and the right to be free from discrimination, as provided under the Minnesota Human Rights Act?
"I think this issue is going to bubble up," says Ombudsman Moe. And it will bubble up—and need to be addressed—well before 2030.