HEALTH CARE POLICY AND PRACTICE MEETING HIGHLIGHTS - MAY 9, 2002

Health and Mental Health Practice Developments in Social Work Services for the Aging

This was an annual meeting on health and mental health care and the aging. Three committees/work groups of the NYC Chapter joined the HCPPN for presentation and discussion:

TOPIC ONE: Empowering the Aged: SPEAKER: Amy West, JPAC

Sponsor: Gerontological Social Work Committee; Barbara Reinhart, Bernice Maloney, Co-Chairs

I come from an organization called JPAC - the Joint Public Affairs Committee for Older Adults. It's a grassroots senior citizen's advocacy organization that's a department of the Jewish Association for Services for the Aged. About 25 years ago, JASA made a decision to start an advocacy program because so many of the things that were happening from the 60's when we got the Older American's Act passed all the way through the 70's. They felt very strongly that older adults needed to raise their voices and have an impact on the decisions that were being made. It's a little bit different from other advocacy organizations that might advocate on behalf of older adults or on behalf of clients. We don't see the people who belong to JPAC as "clients;" we call them members. Our main mission is to teach those older adults not only how to advocate on their own behalf if they have problems with their healthcare or their housing or other issues. We also want them to go into their communities and to reach out to other older adults, to get them mobilized and organized so they can have a collective impact. And we've been very effective. We work in coalition with many, many, other groups around the city and around the state including other senior groups, union retiree organizations, civic clubs and advocacy groups to really have an impact on the issues and the policies that are being made.

I was asked to come speak today on why empower "the aged." I don't like the term because it sounds stagnant in time; it sounds like someone who's very, very old. We prefer to call our constituency older adults. We try to stand for a positive image of what it means to grow older.

1) What would be some reasons why we'd want to do organize older persons? (Answer: "They vote!") They vote- huge reason. We're talking about a massive voting block here. So pulling together older adults is beneficial for the programs we work for. If we can have 500, 600 senior citizens like we did the other day at City Hall or like we're going to have up in Albany, the politicians say, "Wow, these are the ones who are gonna vote me either in or out." They estimate that about 30% of the upcoming election will be senior citizens voting. And even outside of that, just the sheer numbers of people we're talking about, 1.3 million in the city, 3.1 million in the state over 65.

And as we know, the generation that's coming up behind them is huge. And it's going to transform what we think of aging and older adults because that baby boom generation is pushing into their 60's. For example, AARP only goes by its acronym now because they don't want to be seen as a program for older adults.

The "third age" as some people have called the retirement stage of life-- has been extended by leaps and bounds through progress being made in healthcare mainly and economics. We have members of JPAC who have been retired for nearly 35 years. It's a whole different concept. It's not a couple of years anymore; it's decades long of people living in the community. This is why we draw on them as resources and make sure that we use those resources in the community to maintain the dignity of older adults.

2) Why else do you think, as social workers, we would want to empower older adults? [Answer] Yes, it's very good for their mental health. It's one of the number one things that we've seen from our own members; people talk about how good they feel about being involved in community activism and community organizing. It gives them a reason to get up out of bed in the morning despite the fact that that they may be having health problems. They literally feel healthier, and it's because they've gained a sense of fulfillment by giving back to the community, and continuing to be involved; this continues all the way through to those who even have more advanced stages of dementia. Even if they can't be as active in the community, they can be more involved maybe their nursing homes. I mean there's lots of ways to organize people.

The programs for the elderly were fought for and won through hard advocacy, and are not safe by any stretch of the imagination; there have been constant attacks against programs that were really "held harmless" just a few years ago, programs like Medicare and Social Security. They're attacking them left and right, trying to convince the next generation of people that it's good for them if these programs are privatized. There has been a call to put money into the markets, investing and gambling in the stock market; even though as the recent ENRON fiasco points out, all your investments could be gone. The programs that many generations before have fought for and won still need to be maintained and in fact improved.

I'll move now into some of the activism that we've been doing. I co-chair a state wide coalition called the New York Network for Action on Medicare and Social Security. And I would invite any of you who are interested to join us. We meet monthly-as part of a dynamic coalition of folks who are from all over the state, in Manhattan, at the JPAC office on the last Friday of the month in the morning. Lani Sanjek of the New York State Wide Senior Action Council is a co-chair, and also Mark Hannay of New York Metro Healthcare For All Campaign is another co-chair. We initially came together to stop the push to transform Medicare into a privatized coverage scheme where those who are wealthier get better care and coverage. Most recently, we have been working to add prescription drug coverage to the Medicare program. This fight goes well beyond coverage into the prescription drug cost arena, where we are trying to ratchet down the high cost of these medications. We working on this on the state and federal levels.

We also talk increasingly about the regulations that are impacting the Medicare program and are moving into other things that are lacking in the Medicare program, like hearing, vision, dental care. It's a very active group. We've done tons and tons of demonstrations and public hearings with Congressmen and Senators and we've gotten some good publicity and raised public awareness; but we're still fighting obviously. We haven't achieved Medicare prescription drug benefits yet.

The other thing that I wanted to talk about briefly is nursing homes. There is legislation that's been pending in the state now for a number of years, having to do with assisted living and the lack of staffing in nursing homes. We've been fighting to increase the amount of staffing for years. So there's some legislation that's pending. (Discussed postcards regarding increased staffing). It's a big money issue, and it's certainly not an easy one this year with the State's fiscal problems. But it's one that we continue to raise We also need to get more people out there to inspect the nursing homes; there hasn't been adequate funding to do any of that. (Discusses "tell my story" forms, asking people to take them, etc.).

On May 15th there's actually a whole state-wide event happening that's called Seniors Vote 2002. This is an appropriate way to end because we've talked about how seniors are such a force, so we're bringing that force together. There'll be about 600 older adults, with about 10 busses from NYC going up, including the Union-1199. We're gonna go up to present these issues as a senior agenda, and also to challenge the candidates running for governor to respond to those issues. They must say how they are going to deal with not only the 3.1 million older adults, but that population that's coming up right behind them. What are they going to do in terms of senior programs, in terms of EPIC, which is the Elderly Pharmaceutical Insurance Coverage Program, a pharmacy subsidy program, etc.

One last thing. We run a leadership training program for older adults called the Institute for Senior Action; it's really a powerful community organizing class that teaches older adults how to go back into their communities and make social change. I started off by saying that's our goal and that's what we do. It's been modeled after the Community Organizing curriculum at Hunter School of Social Work. It's a 10 week leadership training class that runs the full gamut, how to meet with an elected official, how to write a persuasive letter to the editor, how to get up and make a good public speech, the 101 of the legislative process, and much more. It's held twice a year, in March and in September and it runs for a series of 10 weeks. We bring in a whole group of instructors from around the city and around the state to teach it. 362 have graduated so far, not including the 25 that we have right now currently in the class. A couple of our students put together a book with two parts: How to start your own advocacy training program, whether you be a senior group or a young person's group, that's the first half of the book; and the second half of the book gives the how-to's that they learned in the class.

TOPIC TWO: Social Work Group Work and Mental Health Services in the Long Term Care Setting

SPEAKER: Lucia McBee, Asst Dir. Social Work, Jewish Home and Hospital

Manhattan Division Sponsor: Nursing Home Committee,Wayne Orlowitz, and Ricki Cosenza, Co-Chairs

It's such a nice segue from what Amy was talking about because its about the empowerment of the population that those of us who do social work with the frail elderly do. I'd like to think of the groups that I run as empowering the frail elderly to participate in their care. Most of you know the traditional medical model is very hierarchical; it's very much people being told what their problem is; the group model that I'd like to present today is slightly different. It's called Wellness Groups and it's based on complimentary and alternative medicines and techniques that are out there today. I think they're very synchronistic with social work practice; basically it is empowering the elderly to participate in their own care; it's really a paradigm shift. What wellness groups do is teach the group members to participate in their care. The particular techniques that I've been working with are techniques that were developed at the University of Massachusetts about 25 years ago. They're called "Mindfulness Based Stress Reduction."

About 8 years ago when I began at Jewish Home and Hospital I noticed that there were a lot of problems around chronic pain, and as we know that's a big problem for the elderly. As we extend the life, we have a lot more chronic illness rather than acute, and what we're seeing in the nursing homes is people with chronic illness and along with that, a lot of pain. And as we know, medicine and pharmacological interventions can't always give the total relief of the pain. So I would say stress and chronic pain really affect the quality of life, and what these groups hopefully do is increase people's quality of life. So Mindfulness Based Stress Reduction is actually very tradition, ancient techniques using techniques such as breathing exercises, meditation, and yoga, gentle yoga as well as visualization, music, aroma therapy. We use these techniques to help people participate in their care, to help people feel better; they're called non- pharmacological or complimentary and alternative techniques. The group models that I've taught on the long term care units where we have a significant number of people with dementia; we have a very frail population. The group that was originally developed was not for this population, so I've had to make some adaptations, but I still think that it's a very successful model for any population.

We do deep breathing exercises, we do meditation, we do yoga, we also do a lot of discussion on what you can control and what you can't control, especially for the institutionalized elderly. A lot of the decision making is out of their hands, a lot of things can't be controlled in their life. Nobody ever says, "I can't wait to get old and go to a nursing home." So what we work on a lot using these techniques is to help people realize what they still can do; what they still have control over. This can partly be by using the breathing techniques or the relaxation techniques, but it also can be just a shift, helping them realize that they do have some control left, and that they still can participate in their care. They may not be able to get their call bell answered right away, but they can still take a deep breath while they're doing it, or try to relax or think of something else while it's happening and realize what is still under their control.

Therapeutic touch was actually developed by nurses years ago, and is now taught in nursing school; it is energy healing. It's pretty amazing that nurses are talking about energy healing, but they do. It's actually not touching, it's using energy work to deal with people. It's not with touch, but you come close to someone's body and you work with the energy in their body. Raake is one form of energy healing, therapeutic touch is another, there are many forms of energy healing and body work. It's taught in nursing schools now though I haven't yet met a nurse who uses it in our facility. I was on a dementia unit. This is a group where there was moderate to severe dementia. Many of the participants could not even understand the instructions, but I still felt as I was beginning the work that they would understand if I was centered. It would work if I was coming from a very relaxed place with the tone of my voice.

We also use aroma therapy regularly and that's an incredibly successful intervention for those of you who use it. We also use gentle music and guided imagery. So we ran this group on the dementia unit which was not only for people with dementia, but with severe agitation problems. We really did find that the group would relax and calm people down. Not only did it calm the particular group down, but it calmed the entire unit down because the aroma therapy would spread out, the nurses aides would feel calmer. They'd come and sit at the edge of the groups and do their chart notes, I noticed. It's a very calming effect, so I wouldn't count out any group using these techniques; I think they can be successful with any population. I've run the group with mixed units also, with people with dementia, with other frailties. The participants not only report that they have experienced a sense of relaxation and a sense of feeling better, but also some reduced pain. We have a paper coming out shortly on this. We did pre and post tests on 10 groups and there was an increased sense of well being as well as decreased pain reported, statistically significant in well being. Not statistically significant in reduction of pain, but how you perceive the pain in your life.

I know I want to go to a nursing home that has these kind of treatments. That's how I got started in all of this, by looking at pain and looking at the fact that pharmacological interventions alone do not reduce pain and that they also have all these side effects too. One of the other things we learn to do in mindfulness is to pay attention moment by moment; so one of the exercises we do is an eating exercise. We have raisins that we pass around, we learn to be mindful while we're eating, or to pay attention to our life, to still enjoy what quality of life we do have left.

We also do exercises, The residents really enjoy gentle exercises. They're just stretches, but we really focus, partly on what can you still do. If you have an amputation on one leg, you can still left the other leg. I think the focus of the medical model is so much about the problems and what you can't do, the diagnosis, etc. This is very much about what people still can do. (Describes visuals, etc. I've made tapes of the relaxation exercises, and when someone has pain, the social workers will use the tapes. The social worker will sit with the person and help them use the tape for relaxation.

The other piece I did was a telephone relaxation group where I connected people through the telephone. I've run similar group for care givers, for family members and they find it very helpful. Those of us who work in nursing homes very often are more worried about the caregivers than the actual residents. The residents are being cared for, but then you have these incredibly stressed out family members. So they're being run for caregivers, the telephone group, and the tapes are available for the community. Inside, you want to start with staff because if staff aren't going to buy into this, it's not going to happen.

TOPIC THREE: Social Work in Home Care: Beyond Assessment

Sharon Goodstine, Director of Social Work. DSS and the Evaluation Unit for Visiting Nurse Association of Brooklyn. Sponsor: Home Care Network, Fiona Larkin, Chair

My topic was "beyond assessment." I think if you want to see a branch of social work, and a branch of intervention with patients and clients that's really based on changes in Medicare, you really could look at home care. That's when you see what the impact really is of public policy on practice. I've been in home care for almost 20 years, but the breadth of changes in home care, I even today can't quite comprehend myself. Home care once was a quiet little back-water of social work with a small number of patients and a quiet little practice. You could go out and see your patients for 8 or 10 weeks and provide supportive services such as helping them change their light bulbs, and at the same time, become very important to them. You could do a lot of counseling; that has changed into something that verges on a constant rush to get in, to get out. If we're not part of managed care, we're certainly going to be very shortly.

Everything has really just been speeded up, and home care has been placed in an incredibly important position for patients because they just don't stay in the hospital long enough to get any care. So when I often sit and talk with patients I think over the years of a patient who had an operation that 10 years ago would have been in the hospital for 2 weeks. Then it was for one week, now they're lucky if they're in 2-3 days. They come home from the hospital with a drain in place, and they have not the foggiest clue of what they're going to do; there's nobody to call.

The value of homecare, what we do for people, has increased tremendously. People need us more than they ever needed us before because they are so much sicker. Patients today are routinely discharged from the hospital with fevers whereas in the past, if the patient had a fever, it was back into bed; you're going to stay here till we get to the bottom of it. Today, you go home until you develop something that's a new diagnosis, so that we can put you back in and get paid again. But, the pressures on home care come from a lot of different places.

In terms of social work practice, I'd like to look at social work practice itself. What people need from us is twofold. They still need counseling, which we're lucky if we have time to give them. There's still no one there to really help them sometimes deal with the catastrophe of a mastectomy, with an altered body image, with a change in function, with all the things that we always went in to do as part of counseling piece. What's happened is we're forced into this kind of little box. How can we get them Medicaid? That's what it all boils down to in NYC; that's not necessarily true in every other state, because in every other state having Medicaid doesn't help you the way it helps you here. So we spend a lot of time doing a very sophisticated level of financial planning with people because to be honest, that's probably one of the most important things we will ever do for someone is to get them an active Medicaid number.

And it's forced our practice into something that it never used to be. It's forced people into doing something they may never have thought they would have to do, and they don't want to do. It's caught up with people's image about themselves, and what it means to be part of a so-called welfare related type program. It has to do with asking husbands and wives to sign papers saying they will not be responsible for their spouse; this is the spouse that they've cared for for 30 years. You're going to have them sign a paper that says "I'm not going to pay my spouses bills." It involves telling people that if you were to put your spouse into a nice nursing home, you can keep their income and your income. But if you were to keep them home, you'll have to pay $450 a month as a surplus; otherwise you can't get any care. It puts social workers into a position of telling people who have worked their whole lives and who think they have Medicare and who think they are entitled to homecare that they're not. The bad thing is that the 200 visits that was in the book, means absolutely nothing in today's world.

I just saw something that says they don't want to give general prescription coverage under Medicare. It's like with kidney transplants, you're entitled to Medicare. Well, you have cancer, too, you're not entitled to Medicare. Now what they're going to do is Medicare will cover certain expensive chemotherapy type drugs, but not others. They're trying piecemeal to see if they can keep people happy, and keep people quiet, by saying they will cover these really expensive medications.

Medicare has redefined what the home health aid should do. The home health aid is a medical assistant's personnel, and therefore it is no longer important that this person do your cooking, do your shopping, do any cleaning at all. I don't mean heavy duty, I mean they don't want to make the bed. All this aid needs to do is give you a bath because your personal hygiene is related directly to your medical condition. And the idea that there might be some move of foot to allow home health aids to do more medical tasks wouldn't surprise me at all, because today we now have physical therapists who are being trained to do wound care. Physical therapists in home care will be doing simple wound care. Physical therapists in home care will be admitting patients very shortly, and they will be discharging patients. They are being trained to do the OASIS admission and discharge forms. They will be able to function independently as medical practitioners; the nursing piece will be subsumed under their clinical skills. Why are we doing that? We want to do that because it saves money.

Why does it save money? Because we have a certain amount of money. Under the famous "prospective payment system" that came into home care a couple of years ago, we're given a certain amount of money to service every patient. So how do we service them? Well, Medicare only says that we have to improve them, that we have to have outcomes, we have to have goals. How we get to those goals? They're going to let us decide how responsibly. We have certain DOH regulations, and we have certain state regulations. So we don't know if those home health aids will be running around giving injections quite yet, but those things are changeable. We're moving basically to "if it works, just do it."

I have a friend who works in an EIP (Early Intervention) program in NJ. For those people who don't know it, it's a 0-3 basically very intensive program. They are center based, but its mostly in home based program for children who have any form of disability--physical, a failure to thrive, or even living in a non-supportive environment. It's supposed to bring every discipline into basically a child's life. Whatever discipline they need, whether its physical therapy, social work. What they've done in this agency is that they now say that they've cross- trained everybody. So the primary therapist, my friend the social worker is now on the floor doing OT, she's down on the floor doing PT sessions. I have said, as a social worker, well where is your expertise? If that were my child, I would like my child's therapy to be provided by a PT. I would like to feel that social work will be provided by a social worker. I wouldn't want the PT arranging my benefits, and doing my counseling necessarily. I think that the issue of mushing together all of these therapies because it's the most convenient thing, may not be the best for the patient. I'm starting to feel that we are sacrificing a lot of things in home care through being coerced by reimbursement, and being directed by reimbursement.

And finally, home care is becoming increasingly competitive; it's becoming big business. If you don't think so, you can listen to the ads on radio and TV, you will hear it and see it. People are competing for all types of cases. If you read the adult home articles that were in the paper recently there's a brief mention of home care services. You'd be interested to know that there are many home care agencies that maintain programs in adult homes. You'd have to judge for yourself if it is appropriate. There are many areas in which home care is moving where I'm not sure that I feel the basic concern is the service needs of the patient. Perhaps they're more the service needs of the agencies, and this is what has most upset us.

Our concern is that there was so little input of social work into PPS. Social work is not considered to be a service in PPS that is scored in when you are calculating the reimbursement -into groups comparable to DRG group for home care. Social work is not considered a reimbursed service in that entire plan. And the person that was there representing what used to be called HCFA said that the reason that they didn't feel that social work was important was because they claimed that they had done several studies. There studies revealed such interesting information as, for example, the fact that you had relatives willing and able to assist you at home, had no bearing on how successful you would be in remaining in the home. Now I don't know a single home care social worker who would ever say that could be possible. We all know that a supportive and involve family is a lynchpin of homecare working for people. There are many people who remain home because they have neighbors, people who are not relatives, who take over those roles; that's how they stay home.

The only good thing I sometimes see in health care is that all of this competition for the so-called health care dollar has pushed medical care into neighborhoods where there was no medical care. I can remember back in the early days of home care, there were neighborhoods in Brooklyn where there wasn't a standing clinic. I remember neighborhoods where we found one private practitioner who would take Medicaid. There were no clinics, there was no outreach. Now because of competition, all of a sudden, people have wanted to service these communities. Maybe they don't want to service them for the right reason, but they're actually servicing them with some actual hopefully quality services that come from reputable teaching hospitals in Manhattan and Brooklyn. We're not just talking about Medicaid mills that may have always existed; we're talking about access to real medical care. And it's the same thing for home care; because home care used to be kind of a little backwater, people really didn't refer a lot of patients to home care, it was very hit or miss. Today because perhaps, there is more competition and there are liaison nurses from all home care and hospitals, more people get home care; that's not a bad thing for patients.

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