Conference on the Well-Being of Asian American Senior Citizens – Session 1B

Parmatma Sara: Hi, my name is Parmatma Saran, a professor of Sociology at Baruch College and also the Vice Chair of AAARI. We’ve two panelists here today, Dr Ashman Pandya and Ms. Mala Desai, who’ll discuss about, “Health Related with Senior Citizens. D. Pandya is the President of Indo-American Association or Senior Citizens. Ms. Desai is the founder and chairperson of Pragati, an organization for South Asian women and families in Queens.
We’ll begin first with Ms. Desai.

Mala Desai: Thank you so much for inviting me here today. I’m a community organizer, and my background is in social work. I went on to study non-profit management, and when I arrived in New York in 1992, I started volunteering for South Asian woman and families, which led to the creation of Pragati. We organize around health issues for the North Queens Health Coalition, which is made up of over 60 organizations in Queens. What we do there is community organizing by creating programs. Members identify specific needs that are relevant to the community with regards to access to healthcare. My job is to bring people together, create partnerships, networks and collaborations to meet those needs, and to identify resources to deliver those services. The focus is really on getting real services to real people who are having a difficult time understanding how to take care of themselves, and very often understanding how the system works.

I brought some flyers for you and some materials, so we can talk about it later. I also printed up this right off the Internet, Services for Seniors, which is available through every Department for the Aging across the country. How many of us are aware of the services that are available? There are some that I didn’t even know was out there. We’ven’t organized and tried to create programs that reach our people. You can see the wealth of services that are funded and are available for seniors.

That’s a quickie on available resources, which we need to learn and educate ourselves about. The other way if you don’t have Internet access, is calling 311 in New York City, which really is helpful. When people call 311, they asked to identify what their need is. Sometimes they self identify it, or sometimes it’s the worker who has to ask a few questions to see what exactly the person is looking for. They’re then directly connected to a local agency that can handle their issues. In my office we don’t have direct connections, but when we receive those type of calls, we forward them to local agencies. So that’s how we can start to access resources, and learn about what’s out there for our seniors.

A little about Pragati. It’s an organization for South Asian women and families, and started out because South Asian women really didn’t know how to get what they needed to get. We started out with a very simple ESL class held over the weekends with five women. Ten years later we’re now providing a full range of services.

Pragati is a very small non-profit that sits in the basement of a Jewish academy, doing amazing work. We started doing caregiver services three years ago and have experienced such an amazing range of demands. We need to get ourselves better organized to create a program, because in Queens, for South Asian communities, there are absolutely no services. Where do we send our people to services? In Queens, We’ve one senior center, which is the only vegetarian senior center probably across the country. Not all of our seniors are able to get to that center, and it’s not meeting the needs of the diversity of the South Asian community, because the South Asian community itself has isolated pockets of people who come together based on their religious and/or language needs.

So you have groups which are not being reached. Pragati is a place that has a lot of information. It’s the entry point for people to call, but Pragati can’t provide services, so we connect them immediately to a service that can be provided by another agency. I’ll give you an example which is related to the caregiver services program. What we provide for our caregivers is a lot of counseling, education, and emotional support. We’re also able to cover some costs that are incurred by the family for various things like medicine. We’ve even bought groceries for people, provided transportation, even paid for their phone bills.

We’ve also managed to reach out and educate our community about desperate care. If you see the statistics, you know that over 78% of elders with chronic illness are being cared for across the country by their family and friends. They’re being care for by the people at home, and that’s a burden that influences the quality of life for the family, and also the individual. We know that people don’t want to be away from home, and end up in a nursing home or even in a long-term care facility, unless it’s really required. They want to be at home, and this program is meeting that need. We provide home care by giving caregivers a break to take care of themselves.

Let me give you an example. We got a call from a family who saw our ad. We advertise in Bengali in South Asian and other newspapers. There was an 88-year old lady who had fallen down and hurt herself, was in the hospital, and was being discharged. The discharge planner, the social workers and the hospital physicians didn’t know how to send her home because she needed in-home care. She couldn’t communicate with anyone other then her family, and they had to work. So they asked us to take care of her. And we said OK, we did the research, a case worker from the facility come back to the family, kept in touch and then realize they work in only one region of Queens. The family was not their region of Queens. And we now needed to a certified social worker. The family needed a full assessment, which has to be done by a **** speaking social worker, which was really hard to find. So we forward the case to our local social service agency and they had it done, social worker **** who connected with the family and spoke to the lady and set up through the assessment process some care for the lady at home. And then after we did that connection, she realize that the lady doesn’t live in our region. So they forwarded the call to the agency that provides the service in that region which is Belrose in southeast Queens.

That’s just an example of how we’re starting to connect people to real services, and bridging the gap between how to support the family when they’re at home and when they need to be taken care of by trying to meet other languages. I also brought some information on the technical aspect of my presentation. We’re having an event, a caregivers’ night out, on the 14th of June, so please join us. As of today, I’ve flyers in seven languages, by Monday I’ll have them in ten.

We’re also doing a lot of work on Medicare D. Pragati is providing Medicare D education, outreach, and helping people to complete applications online. The 15th is the cut off date, and we’re hoping for an extension. The ads are out there and seniors apparently don’t know about it. Pragati is providing assistance. People can call, make an appointment with our staff who will help you complete the application

Thank you.
Saran: We can take some questions for Ms. Desai.

Audience:

I’ve one quick question, I’m a dermatologist, and I really don’t know anything about the Indian community. Can you just talk about what would you want to teach me or tell me that I should know?

Mala Desai:
An over arching principal for elders is that they’re to be taken care of by the adult child in the home. It’s considered shameful if the elder is not in the home with the son or the daughter. It’s like a custom, and what is dictated, not by religion, but by custom and family factors that the son has to take care of the elder parents. So the burden also falls on the daughter-in-law. My father doesn’t have a son, just three daughters, and my parents are in India, so it’s a challenge. Still, it’s something we have to deal with, but the issue is really that they want to be at home, and be taken care of by their children. Now when you’re here in America, that’s not a reality, because here, you’re not a family with an extended support system. You’re an isolated unit, and you can’t survive with both adults not working. Once children are teenagers, they really don’t exist. I’ve two teenagers who just left home for college and they kind of never existed for the last five years. So you’re alone.

The issues over here is loneliness. Elders become dependent on their adult children, which they’re not back home. Even today my parents are completely independent and have their own life, social network, family network, and it’s all right that the daughters are not with them. But when they come here to visit us, they hate it. I look around at other grandparents who have come and migrated over here, and it’s really hard to connect them with a social network that’s close by where they’re not dependent on the children to take them back and forth. So their activities get limited to going to the temple on the weekends. The main issue is isolation, lack of even the ability to travel to and from where they need to go.

Audience: As a father of two children, I’ve a question. You’re right too about how the Indian tradition it’s the responsibility of the family, particularly the son, to look after elderly parents. Now, if they’re living here, it’s simply not practical. So even if their parents need help, they’re reluctant to go to centers or talk to anyone. You’re right, it’s a big challenge. I’m just wondering, has your organization made any specific efforts to raise consciousness in the community and the neighborhood as to how things are different here and instead of something at home?

Mala Desai: There is that barrier of trust. They’ll ask me to show my entire life document, and I don’t want to do that. It’s like pulling teeth sometimes when helping to fill out Medicare D paperwork, even if they’re eligible for Medicaid. There’s that fear to sharing personal information.

Many of them have family members who are in the process of migration. When you’re in the process of migration, your life, your documents, your finances and your paperwork are being scrutinized. And they don’t want to deal with it. They’d rather take the Medicaid application to a lawyer, because they don’t trust a social worker to complete it. They want to verify if it’ll make an impact on the immigration process. So there are immigration lawyers who are experts on benefit applications.

Audience: I’ve a small suggestion. There are a number of newspapers that I look at regularly, where you can send to them any coverage of a particular population and their needs. Since your people are active in that area, I would suggest that perhaps you make sure that there’s some coverage in the upcoming issue.

Mala Desai:
Coverage is out there, and everyone reads them, especially the seniors, because they’re home all week and they wait for the weeklies and the dailies to arrive. But guess what, this is an ad. We have to buy the spot. Pragati’s budget is $65,000 a year. One quarter page ad is $700. We can’t afford it. You have to buy ad space, and that’s the only way you get the word out. To do an article there has to be a scandal. They’ll wait for a story of elderly abuse and then write it. They’re not going to put your number out there. It’s a business they run. You have to buy your spot.

Audience: My mother is 83-years old. She lives with me most of the time, but right now she’s in India. What happens if she doesn’t make the Medicare Part D deadline on the 15th?

Mala Desai:
You’re going to have to pay some penalties, I think. If she already has Medicare and an HMO, then she’ll be automatically assigned. You need to check with the HMO that’s going to be paying for the prescription drugs. And then if her situation changes, or prescription changes, a year later or six months later, you need to really do an analysis on whether her HMO will continue to cover changes in prescriptions, and you might need to change the HMO.

Saran: Thank you, Ms. Desai. Our next speaker is Dr. Pandya, President of the National Indo-American Association for Senior Citizens Inc. (NIAASC).
Dr. Pandya:
First of all, let me just tell you about my frustration. When I go and talk to a group, I always ask to myself, “Who am I talking to?” I try to find out, but I’m unable to get a good answer. I thought I would have consumers, seniors coming here. I don’t see any of them. So basically, I think this group is for people who are providing services, either clinical or professional administrational services. Is that a fair assumption? I’m also a physician, so I’m in the same kind of business. I’ve been associated with senior services for ten years or so now, and I’m going to tell you the kind of approach that I’ve found useful. The people that I deal with, they’re older than me, but I’m also older than most of you. That doesn’t make us any better or worse.

My approach is empowering people, creating a partnership with them and say “Look, I’m no better, I just happened to come here early so I can drive, and if you don’t know how to drive, you can learn as well as I can. It took me couple of years, to get a driver license it, and it may take you that long as well, but it doesn’t have to be, unless you start. You’re not different or worse than anybody else. But, if you don’t want to drive in New York City, it’s not a big deal, you can just take the bus to the temple or the senior center. So, what’s the big deal? You can do it. In our senior program, there are many senior citizens who take public transit regularly. Instead of emphasizing you’re old, my approach is, we all have problems. Our lives are different, but if you’re willing to learn few new tricks, you can make your new home, America, a very enjoyable and satisfying experience.

The program that I was instrumental in starting, I don’t run anymore. It’s now run by somebody from a family in India, who was a businessman there. They do a super job, probably a little bit better than I did. They know their needs, priority, budgeting, everything that’s required. So, this is my experience, empowering them, creating an institute so that they can start out with a positive approach. This is why I like the title of the conference, it talks about wellness, it doesn’t talk about handicaps.

Secondly, a point that I’d like to look at is our heritage. Where we come from, Eastern culture, Hinduism, Buddhism, all this religion, they’re very old traditions. There are a lot of things in life you can’t change, so don’t make yourself miserable. Instead, don’t overlook the things you can do, such as have an optimistic attitude and approach to life. That’s why we have a lot of people who do go to social services by themselves. They’re not waiting for social worker or somebody to take them. Too bad workers in the department of social services don’t understand different cultures too well. They’re paid to deal with foreigners or people of foreign origin. Sometimes people tolerate their illness too much. You have hearing problems, there’s something you can do about it. You have to make them aware that they’ve got to look into what can be done, not just accept your fate.

A third point is that we all come from the traditional health care in India, China and Eastern countries. Herbal and holistic medicine is part of us, but we tend to overvalue what we’ve brought with us, and sometimes undervalue what new things are relevant to us. Seniors, come and tell the doctor, that they don’t like taking chemicals. “I have diabetes, I’m going to take herbal medicine, and it’ll be fine.” I don’t have any knowledge about herbal medicine, but I’m not going to say don’t take it. However, if you’re diabetic, you better check your blood sugar regularly. Don’t over depend on traditional medicine. It has its place.

We talked about earlier is how we’re all going to die, something that we don’t want to think about. There is an Indian scripture that starts out with a story where somebody is going to die and he doesn’t want to think about it. He has only eight days to live, so then he becomes a very spiritual person. We can all have an accident tomorrow, and you’re not going to know today. If you prepare end of life document, it doesn’t do any harm. I’m sure half of the people in here don’t have one prepared. We’re all educated people. People that come from other cultures don’t do it. They’ve never heard of a healthcare medical director. Our approach has been to tell people why It’s good for them and for their children.

Myself for example, I have son, daughter and a wife. I’d create a lot of headaches for them because they’re going to have a difficult time trying to figure out what I’d like to do at the end of my life. Each has their own emotional reasoning and idea. So what’s wrong with writing a medical directive now? I know that everyone says that we should do it, and they’ll get to it. Enough waiting, let’s do it. What we do is we’ll do a group workshop. We’ve seventy people in that senior citizen center, and about fifty-five people went home without documents. My doctor happens to be a lawyer, a priest and a physiatrist; he answers all different questions. We tell people you can always change what you put down. All you need is a blank page with some writing, and someone to be a witness. I tell them this is the reason why we’re doing it in a group. There are going to be people here that aren’t your family, and aren’t going to benefit. They can be your witness, and you can be theirs. At the end of the day, after 3 or 4 hours, these people have a medical directive, a healthcare proxy. I’m very proud to say that about twenty-five people filled out organ donation forms.

To me, this is a public health approach, two important issues that need to be addressed. To summarize what I’ve been trying to say, people who happen to be more senior than us, need more empowerment, and respect. The right education and action will certainly make their lives more fruitful, satisfying, and happier. We can be their partner in accomplishing that.

Saran: Thank you Dr. Pandya. There’s reception at 4:30pm, so we have some time left for questions or comments. Let me ask the first one.

How do you confront that issue yourself in whatever you’re doing with them? It’s very difficult to ask Indian American senior citizens to participate in this kind of issue, like writing a will.

Dr Pandya: I’m here with my family, and we did it about twenty years ago. I was in my 40s, and my children were in their 20s. I told them, you’re not going to die early because you make one up. A few days later, we met up with other family, and I got my siblings to make one too. You have to create a structure. People have a little bit desire and resistance, but if you create a structure, people will want to do it.

Anyone else with a question? No? I guess this concludes our breakout session.

Saran: Thank you all for coming, and enjoy the reception.