Beyond Age Discrimination Video Program

Panel 1 - Overview

Barb Blumer is an attorney who has been advising Minnesota housing and health care programs serving seniors for over 30 years.

Rosalie Kane is a professor in the division of health policy and management of the School of Public Health at the University of Minnesota.

Deb Holtz is a State Ombudsman for Long-Term Care, a service of the Minnesota Board on Aging.

Edited Transcript of Panel 1 (Overview)

Introductory Comments – Rondah Kinchlow: I'm Rondah Kinchlow and today we're going to focus on the rights of older Minnesotans and how many of them may be increasingly vulnerable to treatment that may not always respect those rights. Between now and the year 2030, Minnesota will see a profound increase in the number of people over the age of 65. At some point, many of them will be entering nursing homes or assisted living facilities, seeking home health care, or otherwise becoming dependent upon others to meet their basic needs.

In recent months, there have been a number of news stories about seniors who have been physically or emotionally abused in nursing homes. We're not going to focus on those sensational stories in this program. We are going to step back and take a broader view of the rights of older Minnesotans to appropriate care, care that is respectful not only of an older person's humanity, but of their privacy, individuality, and cultural identity.

When we hear the words "senior citizen," a lot of us may have an idea of a stereotype, really, of who that person is. We might picture our grandparents, and we think we know who they are and what they need and that most senior citizens are pretty much like them. We may not think of those who are 65 or 75 or older and living in nursing homes as being Muslim or Hmong or gay or lesbian, but the fact is, the cultural and demographic changes that can be seen in every part of Minnesota are affecting our senior population too.

Are seniors getting the care they deserve, the respectful, nondiscriminatory care they are entitled to under the Minnesota Patients Bill of Rights, the Minnesota Human Rights Act, and a variety of state and federal laws? When such care is lacking, what can seniors and their families do to make sure that cultural, religious, and other needs are respected?

We're here to ask those questions and a lot more, and we're going to do it in a special two-part program with two different groups of experts. In our first discussion, we'll look at the challenges in serving the health care and other needs of an ever more diverse group of older Minnesotans. Our second panel will look more specifically at one example. That discussion will focus on Minnesota's GLBT population and issues that gay, lesbian, bisexual, and transgender individuals face in obtaining nondiscriminatory care.

Kinchlow: We've often thought about the services for senior citizens as being primarily medical services, but there's a whole menu.

Blumer: That's where I wanted to jump in, because I think the challenges that I see are that the services go from food to transportation to health care to socialization to activities to mental illness to everything, and the other challenges, they go on for a lot longer than people expect that they will.

Kinchlow: Can we talk a little bit about the different personality or the different profile of that senior citizen? And I'm noting the office that you're working in, the office that you represent. Are they more outspoken now? Do they know their rights more? Are they willing to speak out more about what they're entitled to?

Holtz: I think every year you see more and more of that. We work with 85-year-old women, for example, who say, "Everything is just fine... even though that person couldn't answer my call light for an hour, and I did have an accident, she was really trying the best that she could." So what we have to do with that age group is remind people that absolutely she was doing the best that she could, but you have a right, Mrs. Jones, to the dignity, and let's figure out how we can solve this together. Every generation, I think, has different expectations, and I think every year we see that people are understanding more and more of their rights.

Blumer: My experience with my clients is that it's the children of those who are receiving services who are typically 60 and under, who are doing the reading, and who do become aware of the rights that their parents have and are asserting them on their behalf more and more frequently, whereas, as Deb said, the older folks don't know their rights, or they're concerned about asserting them.

Kane: I think the concern about asserting them is pivotal. Perhaps more and more people are learning their rights. Though I think there is vast repositories of unawareness. However, if you're in a hospital, if you're in a nursing home, if you're depending on somebody to change your catheter, this is probably not going to be the time you're going to assert a right. Maybe the word vulnerable does fit here, because people did feel vulnerable—

Blumer: And fear of retaliation.

Kane: That's right. It wasn't the time they wanted to say, "Respect me, I'm gay," or, "Pay attention to the fact that I'm a Muslim, and I'd like to pray at this moment." Not when you're very dependent on this doctor, this nurse.

Blumer: I think Minnesota is at the top in terms of our overall legal structure awareness of seniors' rights to live where they want to live.

Holtz: I would agree, Barb.

Blumer: We've avoided what so many other states have, which is pigeonholing seniors as they become to have to need two hours of service or this kind of service, that you have to live here to get that service. You have to live here to get that service. In Minnesota, we don't have that kind of a system. We have clearly recognized that it's consumer-directed and have structured particularly our senior housing regulatory system to do that, which is very unique, and we have to fight hard for that against the protectionism which is also called out in society, saying we do have vulnerable folks, so therefore we should regulate and make people do things that will keep them safe, and that's a central tension that I think we've done well on. The leaders of this state who have structured these things, of which we have been able to participate along with many, many others, have been very attentive to these rights. I think it's the culture in Minnesota that we have wanted to make sure that the elderly were not treated differently.

Holtz: It's a culture of our providers too, Barb. Every state has an ombudsman office just like ours, and nationally, the majority of complaints in each state is related to care, actual care that people are getting. In Minnesota, we're an anomaly. The majority of our complaints don't relate to care. They actually relate to resident rights, about 44%, which can make people pause and think, "Does that mean people aren't hearing about their rights?" We actually interpret that as a good thing. It means that the number one, the majority of our complaints are not about care, so that means that the majority of people are getting really good care from providers in Minnesota. When you get your basic needs met, then you can learn about your rights, and you can voice concerns.

Kane: But in long-term care, I don't think the meek inherit the earth, and I think that people who don't speak the predominant language are going to have difficulty. People who do speak the predominant language and all the people around them working speak another language also have difficulties. And let's face it, most people don't want to live in a nursing home. So the general direction away from nursing homes is very positive, and our care providers in Minnesota are also on that bandwagon, very involved in trying to provide a different kind of service. It is harder. It's kind of hard to get out of a nursing home even if you ask to get out when you're in one. It's—it's sometimes quite hard for an older person to be permitted, encouraged to hire their own help rather than go through a home care agency, even if they would feel they could get more bang for the buck and perhaps organize something that would be culturally consonant and fit in with their needs because of the instinct to protect, and generally speaking, in nursing homes, the lack of privacy is such a barrier. Now, I'm happy to say Minnesota has more private rooms in their nursing homes than most states, and most states don't even keep that information but—

Kinchlow: But when you say barrier, do you mean that they've had their own homes and so they're used to this certain level of privacy?

Kane: It's just an absurd barrier to expect somebody at age 70, 80, or 90 to move into a room with a stranger, and after that, everything else follows. So there's more opportunities in our assisted living settings, which largely are private rooms and even private apartments, and more opportunities as we move away from the shared room kind of phenomenon. But all over the country, shared rooms are the norm. So a lot of the problems people have in trying to lead a life that's comfortable to them with the visitors that are comfortable for them, the timetable that they want, is a function of that problem.

Kinchlow: But I have also read a flipside of that, and is it true that you can be too ill to be in a nursing home and that you can be evicted?

Holtz: The facility, the provider, has to legitimately prove that they can no longer meet the needs for the individual. Sometimes it's just a matter of miscommunication. Does the person need a feeding tube, or are there other options? Nursing homes are mandated to provide that care, so we really are able to provide people different options.

Blumer: And particularly in the assisted living and senior housing arena, and so I wanted to get back to why that is. It's because the professionals have licenses, and they have scope of practice.

Holtz: Good point, Barb.

Blumer: They're not permitted by law to provide services for which they're not qualified. And we want that to be there. That's the basic quality regulator for services is to know that people have licenses and that the professionals will say, "I can't do this because either I or my staff don't know how, and you'll be harmed." You wouldn't want it any other way. But as Deb said, it very often is a give-and-take as to understanding about what care is needed, what options are available, and what additional help can be brought in so the person maybe doesn't have to move from where they want to live, but they get the help they need from the people who are qualified to do it.

Kane: Of course, if you live in your own home, nobody's going to ask you to leave because you're too ill. They really can't. They can only ask you to leave if you don't pay the rent or if you're trashing the premises. But if you lived in a licensed setting, you lose that degree of control. Somebody might judge that you're too sick for the setting. I think in nursing homes, where sometimes people are asked to leave, and I'm certainly seeing this in a study I'm doing now. It's in Ohio, not Minnesota. People with Alzheimer's disease who manifest so-called behavior problems, in a flash, you can find them off in an in-patient psych unit, after which they might not be encouraged to come back. And so that's an invidious kind of problem.

Blumer: Well, and that happens with anyone who has any kind of a mental disability whose conduct does not just affect themselves but affects others with whom they're living in a very intimate setting, and particularly, the nursing homes have one set of rules because they are what they are, and assisted living has a completely different set of rules, and the people who live there are tenants, and they have the right not to be unduly disturbed by the others who live there. And so, again, you have that balance of individual rights versus group rights, which we always have in our disability and other kind of discrimination issues.

Kane: And which play out the most strongly in crowded settings and the shared settings and so on.

Blumer: And one of the points I think is really important is that it's hard to individualize when you are strapped for resources so that you may wish to accommodate everyone's individual preferences, which is a societal goal we really wish to have. If you don't have enough money to pay for even the basic general program for everyone, it's very hard to respect each person's rights. So to me, that's a very important consideration.

Holtz: Barb, do you think it's hard to individualize, or do you think because we get so strapped for money, we get into the mind-set—that it will cost more to do that, which I think sometimes may just hinder our creative thinking—

Blumer: Stress always does.

Holtz: Yes. So I think one of the things, for example, that our office would strive for is just reminding people that there are probably enough unique individual things that we can do that don't cost money. I would agree. When you're limited, you can't go off onto that and create special programs, but I think our challenge is to think about ways that we can meet the unique needs or diverse requests in different cultures just in creative ways. Our bottom line is always, "Dignity is free."

Kinchlow: But I think that the point that you brought up in talking about this, when people feel strapped for cash, they make decisions completely different—

Holtz: Absolutely. It's an added stressor.

Kinchlow: So that you think that, "I can't be creative. I can't afford to be creative right now."

Kane: There are two levels of thinking about money. The one we're talking about now is a reflection on the various reimbursement rates for publicly funded programs. But people outlive their resources too. There are people who thought they had enough money to last for duration —the duration has gotten longer. So there's that problem with private resources, and it seemed to have happened a generation ago too, when people thought they would make it to 70 and they made it to 80. Now there are people who are 80, making it to 90 and plus. So that's one level. And then the other level is the appropriations for public services, which Minnesota has historically been extremely generous with reference to that. I mean, we're going through a little phase at the moment. But we have paid nicely, actually, for our nursing homes and our in-home services.

Kinchlow: I think that it redefines the role of the family's participation in this, because there was a time when someone did not live that long.

Holtz: If your family's here, if your children are in the same state.

Kinchlow: And this certain level of willingness.

Holtz: Absolutely.

Blumer: Any Google search or anything will find that we are all trying to figure out how to rethink the family's role and society's role and make a good balance between those two as we all age.

Kinchlow: And it's a little bit of a clash.

Blumer: Very much a clash.

Kinchlow: Because if that senior citizen is different than the one from 20 or 30 years ago. They're more independent, which means welcoming and embracing that family dynamic might not be such a warm reception.

Kane: They're more independent longer. Ultimately, there is a kind of dependency or interdependence that occurs with age so that you just can't be an island. The family members, by and large, are extremely involved in services and care to older people. There's no abandonment. Nothing like that is happening. Though, family members have their own sort of pushes and pulls, and for one thing, there's some kind of a magazine article image of an older person with white hair and then their children with little kids around them, but that isn't the real way it is.

Blumer: It's the kids with the silver hair.

Kane: So there's the health problems and issues of people who are coming into their own retirement or have their own health problems and their elderly relatives. It's not straightforward, and then there's a lot of needs for the younger generation, and some families simply don't have enough to go every which way up and down the generations.

Kinchlow: But just a couple of other areas I think that we should really be sure to tap into, and that is, you don't want to be introduced to this topic the day that you have to be introduced to this topic. This is the one time doing your homework really—

Blumer: Homework always helps. And there are resources available to help people start thinking about this that we couldn't have dreamed of ten years ago.

Kinchlow: Is there any central starting point?

Holtz: Absolutely. I would say the Senior LinkAge Line. It's a service through the Minnesota Board on Aging. It's a 1-800 number where you start and you can get help, assistance navigating the system. We also have the Disability LinkAge Line in Minnesota.

Blumer: You have the Board on Aging web site.

Holtz: We have the Board on Aging web site.

Blumer: Which goes everywhere.

Holtz: Yes. There's a lot of one-stop shopping and even much more of a concerted effort to keep doing that, to have a lot more coordination for people.

Kinchlow: Just some final thoughts. We all would like to think that we get old gracefully. But just some final thoughts in terms of your feelings on senior citizens.

Kane: Maybe one of the most important things to get across is, as we age, we diverge, so seniors are different from each other. And then when you're thinking about a 40-year time span, there's just huge differences and lots of opportunity for productivity, for creativity. But there will be needs too in older people.

Kinchlow: That's such a positive way to look at this. Deb?

Holtz: I always think information is power, and I think that's one of the most powerful things that we have in Minnesota. We do have a wealth of information and resources and places for people to at least talk about it and develop policies and additional funding and services and supports, and I think it's just something that we all need to think about probably a lot more than we do. It's easy for me to think about my parents who are aging. I would rather not think that I'm in that age bracket yet, but realistically, I should be thinking about, what are my financial resources? What are my social supports? Just thinking about things and just arming myself with that information and knowledge and an acceptance of the fact that life changes, and if we're lucky enough, you get to have the marathon, and you get to age. If you are lucky enough, you get to be a senior.

Blumer: It's hard to visualize when it's uncertain. As my friends are now contemplating and some of them retiring, they have definite plans for the next 15 years, and after that, it's a dark abyss. They have no idea. They haven't visualized themselves this way, and they don't know whether to visualize a healthy 80s or an unhealthy 80s, and so therefore, they refuse to try to visualize it and plan themselves out. I think they would conduct themselves differently on early retirement if they would do some visualizing, and I am not very good at it myself, but that's the model that I'm trying to set, that I can set the model for my parents who are very healthy 80s, and I can also set the model where I might have a stroke tomorrow, but I will be here for 20 years, and that's the hard reality—visualizing yourself in that—and embracing what that means both in a positive and a not so positive way. But to fail to do it, I think, is really counterproductive.

Kinchlow: Thank you three times over for coming and talking about this. There's so much that you can learn just from listening and from observing and, as you said, being fortunate enough to be in that situation where you're helping someone who is a senior, because it's not that far down the road for some of us, a little further for others. But it's not that far down the road, and it doesn't have to be scary if you arm yourself with information. So thank you so much for talking with us this evening.

Continue with Part Two: GLBT Issues

• Sidebar: GLBT Pride Interviews
• Part 2: GLBT Issues, edited transcript
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