Center for Advocacy for the Rights & Interests of the Elderly
The elderly form a growing part of our society, and we should make sure that age is no barrier to their self expression and dignity.
CARIE listens to the elderly and mobilises advocates around policy issues that affect them.
Find out about the problems the elderly face in an increasingly complex society and the many kinds of support CARIE offers them.
Listen here or find us on your favorite podcast app.
December 8, 2020
Understanding What It Means to Be Old
Understanding What It Means to Be Old
Many of society's senior citizens need a voice that promotes their autonomy, dignity and well-being. In this episode we talked with Diane Menio from CARIE about advocating for the elderly and helping them with many of the issues they face.
How Does CARIE Empower the Elderly?
For those who struggle with technology and lack support, vital services like health insurance can become hard to access. CARIE provides a "circle of advocacy", learning which issues are the most important as elderly people phone them with their problems. Diane explains that this informs their campaigns to change public policy as well as their training and awareness programs.
Listen to the whole interview to find out what CARIE is doing to offer support through the COVID-19 pandemic. You can also visit their website, which contains vital information about the rights of elders, including PA elder abuse laws.
Want to learn more about CARIE? You can subscribe to their newsletter, checkout their news section and follow them on Facebook, Instagram and Twitter.
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Every day you and I get bombarded with negative news. And just like our bodies, become what we eat, our minds become the information that we consume. If you want to stay positive, it’s so important that you also listen to stories that inspire you and uplift you. In this podcast we interview leading experts dedicated to solving the world’s most pressing problems. And if you stick around, I promise you will not only be as informed as if you watched the news, you will be uplifted, inspired, and have more positive energy in your life. Welcome to Great.com Talks With.
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Hi and welcome today, great talk with Diane Menier, West executive director of Carie.org. And if you haven’t heard of them before, they are the Center for Advocacy for the Rights and Interests of the elderly. And if you haven’t done so before, I highly recommend that you subscribe to this channel, because today we’re going to talk about how we can improve the life quality for older people. And I’m also sure we’re going to touch on what has been the effects and consequences for elderly people now with the current pandemic. Diane, thank you so much for taking the time to speak with a greater column today. Thank you. I’m glad to be here. And to begin with, how would you describe your organization to someone that is not familiar with the work of Carie?
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Well, Carrie started in the 70s, 1977, at a time when services for the elderly were growing and public public support of those services was fairly new. And so our organization started to help protect the rights of the most vulnerable elders, people who might not be able to speak up for themselves, people who were receiving long term care services, maybe they were in facilities and we just didn’t have at that time the regulatory system to make sure that people were protected and that their rights and that they knew what their rights were, that they had rights even. And so that’s why we started. We started as a coalition and we work together with other groups to try to get things done that would help protect people, including the very major nursing home reform act that was passed in 87. And that was something that we fought for for more than a decade or about a decade, I guess, since our beginning. And so that created a whole system to hopefully ensure quality. I think we all know that changing laws and practices don’t always aren’t perfect. And so I wish that by doing that, we might have put ourselves out of existence. But that isn’t the case. There’s still many, many issues. We also were very much involved in helping to protect people who have been abused and neglected and have, you know, we’re able to get in our state a law that protects older adults. Again, not perfect, but we have something that gives people the ability to be protected from abuse and neglect.
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And so but at the same time, we were doing all that policy advocacy. We also were getting calls from people who were having problems just navigating the system, having problems with the services they were getting. I always like to think that what we do is we help people access services and get quality services. Those are the things that are most important to us. And of course, knowing their rights, we have. So we help people individually as well. We get calls mainly. We get calls from people when they’ve tried everything else and they don’t know where to turn. That’s the kind of response we get from people. Oh, my goodness. You’re the first people who ever talk to talk to me on the phone. You answered the first time because that’s what we do. And so we know that a lot of the elders that we work with don’t have the technology to communicate with one another with us. And so we try to kind of break through a lot of that for them. The systems here in the states are very, very complicated. Medicare, for instance, which is the health insurance for elders, is very, very confusing and challenging to just even enroll and then to understand what the benefits are and how to manage those benefits. And so we help people with those things as well. We like to think of what we do as a circle of advocacy.
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And so that work that we do with individuals really teaches us about the issues they face. And those are the issues that we’re most concerned about. And I mentioned the quality of care in both facility care as well as home care.
Those are primary issues that we are focused on because those are the issues we care about most often. There are other issues, housing and transportation, and we work on those as well. But we like to think, you know, as I said, it’s like a circle of advocacy. We start with that individual. We do public policy advocacy, and then we try to be part of the solution by having training programs like for instance, we have a program called Competence with Compassion, which is an elder abuse prevention training program. And we train long term care staff to understand what abuse is, what to do if it happens, how to report it and so on. And so we were able to develop a program that was a study that was evaluated by a professional evaluator who found that it made a difference. And so we were able to replicate that program across the United States and even in some other countries. And so that’s that’s the way we can change people’s lives so we can change one life when they call us. We can change more lives when we change policy. And when we do training, we. Jane, more even more lives and protect more people. So that’s what we try to do.
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I can imagine how.
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Important, they must feel for elderly people that there’s someone out there fighting for their rights, especially if they are not so used to technology, they might be feeling alone. People around them might have died so that someone is picking up the phone and is eager to help them. I’m sure they feel very grateful for that service. So you mentioned that then elderly people have gone from having few to maybe almost no rights to having more rights today. What do you hope to accomplish, let’s say, in the next 10 years? What would you like to be the difference for elderly people then compared to today?
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Well, you know, there are so many issues, I mean, there one big issue is ageism, and I think we’re seeing that more than anything now during this pandemic that we’re faced with, we want older people to be considered as important. And so we’re what we see sometimes is that it’s they are the people who are dying right now. And there’s not
enough attention to that. People get sick as you get older. Sometimes dementia hits. Nobody deserves to die suffering. And so we want to draw more attention to the issues of ageism all mixed up with racism and so many other issues that people face. And so that, I think, is one of the big issues. We want to make sure that people understand that as we age, I’m one of them. We’re part of society. And we provide you know, we contribute to society and we want to be respected as well as whether or not we can you know, we have our or we continue to have capacity or not. Family members need to get the support that they need to help older adults who might need that kind of help. So those are some of the issues. And, you know, it also kind of comes into a lot of the policy that we have now.
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So we went from having a system and I talked a little bit about that, you know, not having any regulation, not having a good system. But on the other hand, what we had was a community based system in this country where people knew where to go in their own community to get the help that they needed. And now we’ve created a kind of monster in a sense, in that there’s a complex system of services that are more run by organizations or private companies that are maybe for profit and are doing this because of whatever reason. But the government is looking at it from a very different lens than they did in the past. And so there’s so much more oversight, so much more standardization in the way things are done, which is not necessarily the best individual kind of service that people need because not everyone’s the same. And so there are many things that I think that continue to be a problem. And some of them are a result of the just the maturity of the system, our aging system here, which is, you know, what’s fairly new in the 70s and now it’s matured and there are many different factors that are kind of pushing things and may be the wrong direction.
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I’m really curious. From the perspective of your organization and from the elderly, elderly, as a representative of the elderly, what is your view on the current pandemic and the way that it’s being handled and dealt with?
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This is one of our primary concerns at the moment for the last nine months. We’ve been working on this issue from the beginning in March and then we continue. And so some of the things that we’ve been concerned about, our first of all, in the US, a lot of those regulations I talked about were suspended. Residents rights have not been. Honored during this time for people and facilities, and so what’s happened is facilities were shut down and so the only people who are in facilities are residents and staff. And, you know, going back to talking about what we’ve been working on before, the pandemic is fighting for more staffing in those facilities because we didn’t have enough better quality. And what we’re finding now is playing out. There’s not enough staff.
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Many of the facilities that have the most serious problems are facilities that have already had infection control problems. And so it was set up for disaster and it’s become a disaster. The isolation of people in facilities has been tremendously a tremendous problem because people are suffering because of isolation.
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You know, when in the typical setting, people are out, it’s a community in a facility. And so they have the camaraderie of their fellow residents. They do activities. They do things together. They’re not alone. Staff is involved. And families are. One of the most important things that people have is somebody who goes in and helps with the care. My mother was in a facility with dementia. She had severe dementia. And it was devastating. It was devastating, first of all, that we needed to be there because we couldn’t take care of her at all because of the complex issues she had. And when I think about it, I helped her eat when I went to visit. And I did that often and other things, other types of care. And that’s missing right now. And so with the combined with the low staffing, we have no idea. There are studies coming out now. And I read one yesterday that found that while we have had in this country ninety thousand deaths in Long-Term Care facilities of those. And in addition to that, there’s been another 40000 people who have died, basically excess deaths when we look over time. Forty thousand more people died this year in those places than last year. And many of them are people with dementia, because when you isolate someone with dementia, you’re basically taking everything away from them.
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And so what we hear are stories of people who are dying because of starvation, dying because of dehydration. This should not be happening in a developed country like this. And so we have to fight for this. And we’re fighting every day, both at the federal level and at the state level to get our policies to change. We’re trying to get our families back in so they can help. In fact, we maintain and and from what we’ve heard, the evidence is that families don’t bring the virus into the facility. It’s the staff who brings the virus into the facility. And of course, once it’s there, it’s like a wildfire because you have such vulnerable people and they’re close. They have to share rooms. They’re there, you know. And so it’s a recipe for disaster. And we’re trying to do our best to get people protected. And, you know, there are too many horror stories right now. And the truth is, those are the only only ones that are coming out. We don’t know what’s happening in those places because no one’s allowed in. Just over the last couple of months, our regulators have started going in again, but not not as regularly as they had in the past.
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Many of their monitor, much of their monitoring is happening remotely or the residents are also we’re communicating with residents remotely as best we can. Not everyone has the ability to use a device or has a device to use. One of the things as advocates, we like to be able to talk to residents one on one. Some of them need a staff person hold that device for them. They can’t communicate without it and without that help. And so so those are some of the things we’re working on. And, of course, you know, all the stories about not enough PPE for staff. In the beginning, we were hearing reports of staff saying that the facilities administration was telling them to put trash bags on. They didn’t have coverings. And because nursing homes are not like hospitals, they don’t provide that type of medical care. And so they don’t have those things lying around. Yes. They are they dodo infection care, and so for that reason, they should have some PPE, but it wouldn’t be enough for this particular situation. And so now we have better PPE supplies. We have better testing because that was another problem. We just have not had enough testing and that is better.
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But we’re also waiting for the federal government to send more funds because the funds are running out. And we’ve been able to have something in Pennsylvania and other states where we have health systems that are going into facilities to help with all of those things that’s running out on December 1st. And our Congress needs to act to get more funding so that we can get that to continue as well as we have a National Guard that’s been helping with testing and other staffing issues in facilities. And we need that to continue.
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So so just at a time when we have this steep increase in cases, we’re about to lose the funding that’s helping. And our numbers are, you know, three to four times what they were at. It’s at this virus peak in April and May.
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Yeah, it’s an incredibly challenging situation. Imagine that someone is listening to this, maybe an elderly person, maybe someone that is younger. What can they do to help spread that awareness for elderly rights and what can they do to help?
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Well, you know, first of all, one of the issues that we’ve had is people not following guidelines in terms of wearing masks, keeping themselves protected. And so when I talked about staff going in and carrying this along, that’s because they are exposed differently. It’s not just going into their job. And so we need people to be careful and to think about how they’re conducting their lives. And so that’s one thing, but also just becoming more involved and understanding what it means to be an older person and what kind of support you need. Many people have grandparents or parents who are elderly and hopefully and they may be very healthy. And that’s a wonderful thing. But also understanding that not everyone has that privilege of having good health or a long life without problems. And so we really need people to be active. We try to get people involved, mobilize people around policy issues, because the way that we change policy is not just by us saying we need this to change. It’s about other people going to their own representatives and telling them this is what we need to happen. We have a very large coalition of family members that have formed around the lack of visitation and facilities. And they have
become very vocal, though that’s the kind of movement we need is the grassroots movement. It’s people who are being impacted. Speaking up. We have residents who are speaking up, people who live in those facilities. Of course, sadly, many of them can’t speak up because of the issues they have both physical and other cognitive problems. And so so but but there are some who can and they are speaking up and that’s that’s critical. We need to hear from the voices of people who are impacted, people who are concerned about this and want to protect their own future, as well as the future of their family members as they age.
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Yeah, and what can someone do to stay in touch with Kerry and what can someone do to help out your organization?
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Well, our Web site addresses W W W Khari CAIR, i.e. dot org. So please go to our Website. You can sign up for our newsletter. You can contact us. My contact is online. I’m glad for people to reach out to me and all of our other staff is there too. So we’re pleased to hear from people and we would love to have the support of all anyone.
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We’re pleased to have that. And we also. But besides the support, we do want to help. And so if people want help, if they want to understand more, we’re glad to talk to them or if they have a problem, call us. We’ll try to help.
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Beautiful day. And thank you so much for taking the time to speak with great adcom today. We appreciate it.
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Well, thank you so much, Neal. I appreciate it.
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Thank you. And for you listening. If you enjoy this and if you would like for more people to be able to hear conversations like this and maybe take some positive action, please consider subscribing to this podcast. It will greatly increase our chances to get through the algorithms so that more people can hear this kind of message. Thank you so much for taking the time to listen today and we’ll see you in the next episode.
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