Fredda Vladeck: Community Matters: Rethinking an Aging Society
The following keynote was delivered by Fredda Vladeck, director of the Aging in Place Initiative, on March 26, 2012, at a Philadelphia Corporation for Aging conference on urban aging. At the same event, Ms. Vladeck received the 2012 M. Powell Lawton Quality of Life Award.
Thank you, I’m so pleased to be here. Receiving the M. Powell Lawton award has great personal meaning to me, as you will shortly hear.
Before I begin my talk I want to acknowledge several folks who are here today:
- My husband, Bruce, the HCFA, now CMS, administrator during the Clinton Administration;
- My bosses, David Gould, senior vice president, and Debbie Halper, vice president, of the United Hospital Fund;
- My staff, Anya Nawrocky and Rebecca Segel;
- Anita Altman of UJA-Federation of New York;
- Karen Taylor of New York City’s Department for the Aging; and
- Karen Schwab and Ron Bruno, co-chairs of New York’s NORC program directors’ group.
Thank you all for coming to Philadelphia today. I hold each of you responsible—each in your own way—for my being here today.
When Allen called to tell me about this award, I was flattered, to say the least, but I was also a bit surprised by the selection. M. Powell Lawton was one of my heroes in changing how we think of older adults. Instead of defining them by their problems—a hip fracture, demented, a wound care person, paranoid, and any other deficit-based diagnosis you can think of—Lawton gave us a framework with which to understand the transactional relationship between older adults and their environments—“all that lies outside the individual.” He taught us that, as the competencies of older adults change, the adaptations that are made (both internal and external) can impact the quality of their lives.
When I met Powell Lawton in 1984, I was a young social worker in the Department of Community Medicine at St. Vincent’s Hospital in New York City. He was the guest lecturer for the department’s quarterly “brain re-charging” meetings, as I used to call them. I carefully listened as he placed the older adult in a community context and talked about the deleterious effects the environment can have on how one experiences old age, as functional abilities and competencies change.
Lawton also said that there were adaptations that could be made to improve that experience or quality of life. Although that day he was focused on the physical attributes of the environment, I realized then that the actual geographic and social place—called the community—in which an older person lives probably also affects the quality of life and how old age is experienced. Back then I wasn’t exactly sure how, but I was sure that it did.
As many of you know, I am not a researcher or theoretician. I am a practitioner, and today I want to do four things:
- Tell you the story of how I came to understand the importance of the community in the quality of life of older adults;
- Suggest a conceptual framework for a supportive community;
- Take a look at how the models and strategies that have evolved over the last twenty or so years fit the framework; and
Raise some issues we will need to address if we are to make the communities in which most older adults live in America good places to grow old.
First, the Story
Let me take you back to St. Vincent’s Hospital in 1984. I was a geriatric social worker working on a Robert Wood Johnson Foundation-funded project called “Hospital Initiatives in Long-Term Care.” (By the way, I’ve always disliked the term “long-term care.” I think it is a misnomer. I think most of you would agree that the issue is one of long-term living—and the supports that are needed to maximize that living until one is no longer living.) I was charged with figuring out how to deal with the environmental problem of frail older adults stuck in their apartments.
The area immediately surrounding the hospital, Greenwich Village, is predominantly made up of very old brownstones with eight to ten steep steps leading up to the front doors and then stairs going up to apartments above the first floor. With such limited access to the world around them, the health of these older adults was being compromised, and they were winding up in the emergency room with what today we would call preventable admissions.
The then chair of community medicine, Dr. Phil Brickner, was a pioneer in bringing health care to where people lived. In the 1970s he created the Chelsea-Village Program with teams of physicians, nurses, and social workers who went into people’s homes to take care of the health care needs of their homebound patients. With ongoing management of the health and social support needs of the homebound residents of Greenwich Village, their visits to the emergency room decreased—but they were still stuck in their apartments. The only solution, it seemed, was to build affordable, appropriate housing.
Being a realist, I knew that this was no solution at all, given the premium on real estate, the number of units that would be needed (then and over time), and the fact that most of these patients had no intention of moving. They had made their accommodations.
We quickly abandoned our intention of solving the stairs problem in Greenwich Village and began to look at what other environmental presses there were on older adults living in the hospital’s Chelsea-Greenwich Village catchment area. I started in the emergency room and noticed what today we would call a hot spot: Penn South Houses, in the Chelsea neighborhood, which had a high number of ER visits that resulted in hospital admissions of older adults in compromised states. Lots of falls, confusion, dehydration. These were mostly preventable admissions!
What was going on in the community called Penn South Houses? I called Dave Smith, the president of Penn South at the time, to find out.
Penn South Houses is a moderate-income ten-building cooperative housing complex on the west side of Manhattan—in the shadow of Penn Station. It was built under the sponsorship of the International Ladies Garment Workers’ Union to provide affordable housing for working families—mostly ILGWU members. The original cooperators, having moved in together in 1962 when it opened, built the “community,” physically and socially, from the ground up. And what a community it was.
It was a very political community—with mostly Democrats, but also socialists, communists (both Stalinists and Trotskyites), anarchists, social democrats, and a few Republicans. The ideological battles could be fierce at times, but what guided residents was a shared vision of the kind of community in which they wanted to live—one of mutual support (neighbors helping neighbors), active and meaningful engagement (with a full calendar of events including political meetings, interest clubs, and community-wide activities), and concern for the common good (an on-site nursery school for the young families, despite the overwhelming number of apartments with no young children). Somehow they made it all work.
By 1985, 5,000 of the 6,200 residents were age 60 years or older—with more than 10 percent well into their 80s. Half of the older residents had never married. And half of those who had married had never had children. They had all moved in together in their younger years and had grown old together. Penn South had become a Naturally Occurring Retirement Community, as defined by Professor Michael Hunt of Wisconsin.
From my conversations with Dave Smith I very quickly began to understand that Penn South was a frightened community that was experiencing what today we would identify as severe competency-environmental press.
- He talked of people worried about falling and being taken to the hospital and possibly losing control over what happened to them.
- He talked about the wandering of confused or demented residents and how frightening it was for the community as a whole.
- He told me about the problems of overflowing sinks and bathtubs and the strains they put on the physical plant.
- He told me about the economic and managerial challenge when someone is no longer able to manage paying the monthly maintenance bill and eviction proceedings must be initiated.
He talked about how distressed the residents, old and young, were becoming by how much the community was beginning to look like a nursing home, with frail older residents sitting on the benches outside with nothing to do—perhaps making it a less desirable place to move into.
In keeping with the community’s ethos, the residents tried helping their frailer cooperators—they even formed a volunteer brigade that was trained by the Brookdale Center on Aging. But as time went on, the sheer numbers and complexity of the problems were overwhelming them. The social fabric of this community was breaking down.
When I asked what could be done to help Penn South, Dave suggested that the hospital station a social worker and nurse on site to help with these problems.
Tempting as this was, I knew that it alone would not really help the situation. It would not change the social climate of Penn South—or the experience of aging in that community. People would still live in fear of becoming like their frailer neighbors. And it would continue to stigmatize the very people who needed help. The "Sadies" of Penn South would remain hidden behind their apartment doors, struggling to not draw attention to themselves as out-of-whack thyroids, or medication errors or problems, brought on confusion, or dehydration set in, until a crisis eventually landed them in the very place they did not want to go—the hospital emergency room—fearing that they would not return.
Thus began a series of community conversations about how this community wanted to grow old. Yes, they wanted help for their problem neighbors. But they also wanted to keep their brains stimulated and wanted to continue to be full participating members of their community. They had fashioned the community they wanted for their middle-aged years, but had not realized that they would need other things as the community grew older, in order to maintain its vitality and their vision of a community that cared for and about one another.
I dared them to dream. What resulted in 1986 was the NORC Supportive Service Program model—an on-site partnership between the housing complex and its residents and two social service agencies (one for individuals needing help and the other to manage the group activities that the seniors wanted, including education, choral groups, theater club, art classes, writing workshops, exercise programs, a social action group—most of these led by the residents themselves).
The partnership also included a hospital, a nursing home, a home care agency, and the local senior center. It might interest you to know that half of that center’s 350 daily home-delivered meals went to residents of Penn South.
There were endless planning meetings over the course of a year as we designed the model. It was quite messy as we hammered out roles and responsibilities, how we would all work together, who was in charge, and to whom we were accountable—to our individual agencies or to the community (housing complex)? These meetings seemed endless until an event shook Penn South to its core—an older woman had wandered onto the roof of one of the buildings and had died of exposure. Dave declared the planning phase over. Six weeks later we opened our doors with a staff of social workers, a geriatric nurse practitioner, a home care specialist, and the residents themselves.
We were fortunate that UJA-Federation of New York took a big chance and funded this experiment for three years. Toward the end of the second year, we were visited by my good friend Anita Altman, of UJA-Federation. She and her committee wanted to see what was going on. They walked in on a busy day at Penn South and saw:
- Standing room-only classes being taught;
- The sale of donated theater tickets that the residents had solicited from local theaters, to raise money to pool for an emergency fund for any senior in need;
- Seniors getting their weekly blood pressure monitoring and counseling from the nurse practitioner;
- Resident friendly visitors helping low-vision seniors read their mail;
- A retired bookkeeper resident working with a social worker to help with daily money management for Charlotte, who was homebound and physically unable to take care of her daily money needs;
- Seniors getting help filling out the city’s required annual income affidavit forms; and
- A wife talking with a social worker about the difficulties she faced caring for her husband, who had debilitating Parkinson’s.
In the midst of this activity a crisis was unfolding. A resident came to report that she was very concerned about her older neighbor down the hall, whom she hadn’t seen in more than two weeks. An hour later, when the geriatric nurse practitioner got into the apartment, it was clear that there was an abuse situation going on involving two independent home care workers. Feces were all over the apartment. Checkbooks were out with checks having been written and cashed that day. Rose was in her bed looking quite confused. We safely got her to a hospital, and the home care workers were arrested.
Anita took one look at this typical day-in-the-life at Penn South and realized the potential of this model. She knew that we would need to test it out in other communities to make sure that the model was not unique to Penn South. The rest is history. I won’t bore you with the details except to say that Anita and I were convinced that public policy was needed at the federal, state, and local levels to support community-specific responses to the aging-in of such communities. And in 1999, when New York City began supporting the NORC program model, the United Hospital Fund created the Aging in Place Initiative to help guide the city and foster the development of NORC programs. This was consistent with the Fund’s long history and its belief that health and community-based services go hand in hand in improving the health of people with chronic conditions.
Since then, a lot of things have been happening across the country to re-imagine or retool communities for an aging society. We now know that the physical and social environment called “community” matters in how its residents live, and die.
States and localities have been engaged in a wide range of initiatives at the macro level to make their communities more age-friendly, to improve both the physical environment and the quality of life of older adults—from Livable Communities to Lifelong Communities to Age-friendly Cities, to name a few.
Through the lens of older adults with wide-ranging abilities:
- We are creating more safe and walkable streets;
- We are physically designing or redesigning communities that allow, in fact encourage, more social interaction;
- We are reviewing and adopting public policies and changing local practices to increase access by—and promote inclusion of—older adults in all that a community has to offer:
- Establishing standards for age-friendly business practices;
- Adopting policies that encourage older adult participation in cultural and educational offerings;
- Standardizing the size and typeface for all public documents so that those with low vision can read them;
- Increasing access to healthy, affordable foods in communities that are food deserts, through a variety of strategies; and
- We are promoting the health of community-dwelling older adults by re-tooling Parks and Recreation facilities and programming to include older adults as valued consumers, and spreading evidence-based health promotion programs across community agencies and institutions.
At the individual level, we’ve experienced a shift in emphasis in our long-term care public policy from nursing homes to home and community-based services. Primarily through initiatives in the Medicaid program in many states, we are now serving far more functionally impaired seniors in the community than in nursing homes. Non-Medicaid-financed home and community-based care of the frail elderly, supported by both public and private funds, has also mushroomed. As welcome and needed as these service expansions are, however, they do not serve all who need them, and they reinforce the separation of frail elders from the community around them.
So, as important and necessary as these two streams of change are, I believe there is a middle ground with which we must also be concerned—and that is the more immediate environment in which older adults live and that they call home.
With age come infirmities that shrink the world in which one lives:
- The older and less mobile someone gets, the more important that immediate place called “community” becomes; and
- As that immediate community grows older, the community itself can experience the competence-environmental press that we saw in Penn South.
Older residents are less able to provide help to others, some leave their homes less often, and some become more dependent on formal services that serve to keep them behind their front doors, separate from the rest of the community.
Depending on the demographic of the older adults in a community, the fabric of an aged-in community—that critical dimension that makes a place a community and supports the ability to age well—begins to fray.
We need to do something different to support the immediate community as it ages—something that improves the quality of life for all its older adults.
Since the enactment of the Older Americans Act in 1965, we’ve learned a lot about:
- The aging process and the things that can be done at an individual level and at a community level to maximize functioning and reduce the burden of disability;
- The importance of living meaningful, productive lives and maintaining social-affective ties as one ages;
- The life-cycle of communities as supportive social environments, with constant changes in their resident populations that can positively or negatively affect people’s daily lives.
Some of this we’ve learned through the painful experiences of the elderly during recent heat waves in France and Chicago, which showed how poor community supports led to preventable death and suffering.
Strategies for a Supportive Community
To me then, a supportive community is one that has a set of interrelated attributes that work together to:
- Maximize the health and well-being across the spectrum of its older residents—from the well elderly to those who are frail;
- Foster a wide range of roles for older adults in their community beyond that of client; and
- Promote connectivity among its residents.
All three need to occur at both the individual level and in the community as a whole. Focusing on only one of these won’t get us to our goal of a supportive community.
Consider the following strategies:
- Stationing a social worker and/or a nurse on site to deal with individuals’ changing needs can help ameliorate immediate problems they may experience, but only for those who are willing to self-identify, or for those who are stigmatized by their “failures”—it does little to help older adults maintain their health and well-being;
- Fun activities and educational programming can reduce social isolation and stimulate the brain, but only for those who are willing and able to participate at the times they are offered;
- A range of exercise programming or evidence-based health promotion programs can help maintain physical functioning and well-being but, again, for those who are so inclined;
- Creating opportunities for neighbors to help one another makes for meaningful engagement and can help reweave the social fabric of a community, but must be accompanied with professional supports when needed, lest residents become overwhelmed by constantly changing needs;
- Forming a social action committee to advocate for improvements in the physical environment is empowering and not only makes it possible for older adults to contribute to their community but also, when successful, affirms their ability to affect their immediate surroundings.
We have evidence that each of these strategies works for its intended purpose. But I maintain that all of these strategies, and others, need to be happening at the same time—to one degree or another, depending on the specific community. Implemented in isolation from one another, whole segments of a community’s population are left out of the mix.
The last twenty or so years has been an exciting time of great experimentation with strategies that seek to change or improve the experience of aging in community. In addition to the ones I mentioned earlier that focus on the macro level, we also have models such as NORC programs, Villages, Communities for All Ages, and the like, that work at the immediate community level to engage residents and develop programs, services, and responses based on their concerns and aspirations for the kind of community in which they want to continue growing old.
A Public Policy Agenda Is Needed
Going forward, the demographic changes that are happening in our country make it imperative that we establish a public policy agenda that funds supportive community programs—to strengthen communities as they age. To fund such an agenda with public dollars, we will need to address a number of key issues:
- Determining scale—what metrics should be used to define an aged-in community? How many older adults, in what proximity to one another, are needed to build on the social capital in a community? In what density, to take advantage of economies of scale? What boundaries should be used to define a community? Is it one housing development? A neighborhood? A whole county? Boundaries must take into account how older adults define and live life in their community.
- Differentiating among Models and Strategies. It may surprise some of you to hear me say that not every community is suitable for a NORC program. It may need something, though. How do we select from the wide range of models and strategies out there—each competing for dollars and attention? One size or type does not fit all. We need to categorize different models or strategies and the kinds of communities and conditions that each is designed to address. This would help make for more informed decisions about which model or strategy to pursue, rather than having potential funding drive those decisions. Professor Andy Scharlach from Berkeley, and Robin Stone of LeadingAge, have attempted this huge task, which is ongoing.
- Demonstrating Outcomes. How do we know that what we are doing is:
- Improving the health of a community?
- Expanding the roles that older adults have in a community? or
- Reweaving the social fabric of a community?
User-friendly measurement tools are starting to emerge that can help us prove the effectiveness of our interventions. You heard earlier about New York City’s use of Health Indicators, developed by the United Hospital Fund. That health risk identification tool is now being used by senior centers, public housing authorities, and NORC programs around the country—including one of the NORC programs here in Philadelphia.
In preparing for this talk, I learned of PCA’s social capital index. After this conference, I hope Allen will teach me more about it. I’m eager to learn how granular it is. Are there ways to utilize the tool at the neighborhood or immediate community level? Adoption of standardized measures of change is important and helps hold us all accountable.
- Building Leadership and Professional Development. It always comes down to this: new ways of working require a different repertoire of professional skills and leadership. Think about all that we’ve heard today: community building and organizing, cross-sector partnerships, using data to drive interventions, targeting interventions where and to whom they are needed, and proving that what you are doing is improving life for individuals and the community as a whole.
Speaking for a moment to my profession, I’m very proud to be a social worker, and I am proud to be the first social worker to receive this award. Although we are among the lowest-paid professionals, we have been the backbone of caring for the vulnerable among us. But moving forward on creating more supportive communities means a very different way of working than how the social work profession in the field of aging has historically functioned. It will require new skills, a willingness to experiment, and changing a mindset that says older adults are a mass of needs. It will also require a willingness to share power with the very people we are trying to help.
Large-scale adoption of these models and strategies will also require public funders—the Administration on Aging and the Area Agencies on Aging—to move beyond their comfort zone in contracting for specific services, and may also require new skills. Adopting a new vision of aging in community will affect how they implement and measure success, and require a different operational architecture than that of individual service provision. They will need to learn how to embrace cross-sector partnerships and how to work with “communities”—not just their contractors.
I say this with the utmost respect for our public agencies. But what I’m saying is based on experience both in New York, as it adopted the NORC program model as a public policy option, and at the national level, as AOA implemented the Community Innovations for Aging in Place demonstration program.
I think my colleagues—Karen Taylor, from New York City’s Department for the Aging, who implemented the public adoption of the NORC program model, and Ruth Finkelstein, who you heard from earlier today and who serves with me on AOA’s national advisory committee for the Community Innovations demonstration program—would agree with me.
So, there is much to do. The challenges are formidable. But we will be well served if we are guided by the vision that is so well expressed in PCA’s statement on its age-friendly city as “…one that is committed to improving both the physical and social environments that surround the city’s elders to facilitate independence and neighborhood cohesion.”
Thank you for this honor and for letting me share my thoughts with you today.