We are letting the funding drive what we do, and the kinds of solutions, and even the questions that we are asking.

Q: You have spoken of "tired 40-year-old templates" and have been a major advocate for reinventing communities. We have a system of nursing homes, assisted living centers, community centers, many funded by Medicaid or Medicare; what is the matter with those?

A: Those are the institutions we know and recognize, but when you ask what is wrong with this 40-year-old template: It was designed for a different time, a different population, a different challenge -- it doesn't take into account that we all live, and old people live, in the context of a community, and the older we get the more important the role of community. Especially as you think about the kinds of help that neighbors give one another, and as a whole community ages, the neighbors may not be able to continue helping one another, so the role of community has been seriously overlooked and undervalued.

Q: I wonder what you mean by the need to reinvent our society, to reinvent communities

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• Staying Put at 96¹
5/6/06
 

A: What can we do in communities to help shore up the natural supports and create more supportive communities, as well as organize and locate a range of services different than we currently do? Our system, Medicare and Medicaid, is delivering this to older people in a fashion I call "one hip fracture at a time."  When you have ever-increasing numbers of older people in a community you have an opportunity to really think about this a little differently.

I will take a simple example. There is a lot of attention being paid to elder-friendly communities, and while most people think of sidewalks cut out so people can [use] their wheelchairs … if you think about what is important as people age, what is most important is connection to other people and community. Yet we don't really assess communities in terms of their ability to promote a coming together.

We build playgrounds for kids, and there is a lot of business that gets done on the playground. Having been a mother of young children, [I know] there was more stuff that got done, making playdates, making friends with other young mothers.

Where does that happen, what is that outlet for older people? Where do they go for that kind of rejuvenating? What is the structure for that? It is certainly not the senior center.

If you start looking at what we need to do to build the infrastructure in communities that support aging in place, you will find that the communities have many more resources and social capital that will be helpful, if we only step back and look and ask.

Q: The disabled community has been very vocal -- almost militant -- in demanding that care be offered in the home. Money spent on elder care has gone overwhelmingly in favor of institutions, over home and community care. Where have the advocates for the elderly been in making the same demand? Why don't we see the same level of militancy, a kind of take-to-the-streets approach on the part of those groups that activate for the aged?

A: You are talking to an old community activist. Advocacy is not what I shy away from or am afraid of.

I have thought about this issue a lot. We are talking about very different populations. The disabled community is in general a younger and -- aside from whatever the disabled condition is -- a relatively healthy, stable population that is trying to figure out how to take its place in society. That is the younger disabled. And then there is also the developmentally disabled and their families, and frankly those two groups account for the larger growth in Medicaid long-term care expenditure -- the growth in long-term care among the elderly has not been that great or significant.

By and large, the elderly are not a homogenous population. You are dealing with an enormously wide age spectrum, all sorts of conditions and abilities all sorts of economic classes spread out all across the country and so are their families. Their families are not by and large living in close proximity. It is a very hard group to organize … I would like nothing more than for the elderly of America to rise up and speak with one voice about what their vision is of how we as a country should be addressing the issue of aging.

Q: If you were redesigning society, how would you make it more elder-friendly? What does America need to do to take care of its elderly?

A: I would change my approach. I would ask the elderly what they think is needed. We haven't done that.

Q: Is there hope on the horizon, or are there too many vested interests -- far too many dollars at risk -- to allow for any genuine reform?

A: I am hopeful – of course there are vested interests; that is American society, that is how we work. I think that reform happens idiosyncratically. Yes, there are always going to be vested interests that are at play as you try to address a problem or make changes.

You have your provider industry. You have got the families, which are providing, by the way, the overwhelming majority of the care, and we are not really asking them what they want. There are many vested interests; that is part of what it means to live in a pluralistic society.

But it goes back to organizing the people of this country [to reach out to elderly] and their families. There is a lot of effort to try to figure out how to move from an institutional-based bias of care to home- and community-based.

This is still a work in progress, of moving from institution to home and community, and each state will do it a little differently. There have been promises of great savings if you move people out of nursing homes into communities. It is not at all clear that this is true. For some, it is more expensive, for some it is less expensive, for some it is as expensive, but the promise -- it is a mantra in this country -- that it is cheaper to take care of people in community -- I think we really [need] to do some analysis before we go down that quick-fix road.

But in the end, when you talk about what are my hopes for the future -- I hope that we as a country can get back to asking ourselves the central question, which is how we as a society care for and about one another; that is the question that helps us start looking for answers.