Aging and Disability Issues in the Capital Area of New York State

Blond is the new blue.

2008-09-21T19:47:00.002-04:00

or,

"He disagreed with something that ate him."

Can anybody guess where this is going yet? It's just a bit of social commentary for today: slightly over fifty years ago, Ian Flemming had his secret agent James Bond posit that Florida was full of older women with blue hair. That's the way it was in the 50s and 60s (and maybe the 40s and 30s, too: I don't know back that far). The point was that there was some kind of artificiality about the Floridian lifestyle, the blue hair being the symbol of it all. Flemming had a way of working that kind of social commentary into his work: in the same work, Live and let die, M states that "the negro races are just beginning to throw up geniuses in all the professions — scientists, doctors, writers ... They've got plenty of brains and ability and guts." Quite a daring statement in 1954.

So where did the blue-haired ladies go? They became blonds! My grandmother did the blue-hair thing back in the 50s and 60s (and 70s). My mother was a blond. In fact, I've started noticing that many women in their, shall we say, gray-hair years are not, gray, not blue, but blond (or brunette or, well you get the point).

This is empowerment. We don't see age as a type of branding: it's the true empowerment of "you're only as old as you feel." A woman's "life" does not end just because her hair turns gray, just because she reaches a certain age. That works for men, too. (Of course, its sad that a person would be judged by the color of their hair to begin with, but that's an entire other train of thought.)

So aging has a whole other dimension now. We age "young" and we look "young" as we age. We carry that with us now into a different type of aging. The older adult of the first decades of the 21st Century will be a completely character from the older adult of the mid-20th Century. Living longer, healthier lives, we will look the part. HOw about that, Ian Flemming?

So angry my Hair Hurts!

2008-09-07T00:39:00.006-04:00

That's how I get sometimes. Tonight it was watching We were soldiers once. That's the movie based on the book We were soldiers once, and young, about November of 1965 and the battle of Ie Drang in the Central Highlands of South Vietnam. It's not that that battle upsets me, but the entire idea of 58,000, mostly young, U.S. service men and women, and the Lord only knows how many Vietnamese, both north and south, killed is horrifying. And why was it? Because Lyndon Johnson was afraid of being labeled the President who lost Vietnam to the Communists? I believe that the late 1960s was the time of the height of U.S. power and prestige, that it all started to drift away along with the end of the Johnson administration, along with the Great Society, and that it's never come back since then. Nixon was too busy establishing the new conservative majority, based on his southern strategy of division and racism; Ford was too busy putting Nixon behind him; Carter was too caught-up in his own national malaise; Reagan was too busy solidifying the Nixon strategy of division and wedge-issues; and so it's gone. For U.S. global power, for the U.S. military, for international prestige it was never what it was in the early second half of the 1960s. I'm not saying this is a good or a bad thing, although global strength at the cost of 58,000 lives in a senseless war is not something for which I would argue in favor.

Which brings us to another point. We are faced today with one legacy of Vietnam: survival rates for battle-field casualties are higher. Body armor now protects a soldiers body, and evacuation to first-class medical treatment quickly happens.

This is at the expense of crippling injuries, injuries that the Department of Veterans Affairs, ex- the "VA," seems ill-equipped to handle and that will be a legacy of this war for years, for decades to come. TBI, traumatic brain injury, seems to be at the top of the list of unintended consequences. Way too much head rattling around, too little post-rattling care, what with roadside bombs and other such hazards. How do we plan on caring for these scarred soldiers? It does not seem like there is a plan yet. Of all the lessons learned on the battlefields of Southeast Asia, we still don't do well on the home front.

Odd how Vietnam, for so many reasons, still casts it's long shadow.

Healthcare not Welfare!

2008-09-04T20:13:00.002-04:00

Catchy slogan, huh? That's because I stole it, sort of, from a local political campaign, "Healthcare not Warfare." A good lefty sentiment, but not on point for me, at the moment (anyway, it's a primary, and I'm not registered in either of the tweedle-dee/tweedle-dum parties). No, I'm still thinking about why it's so easy to cut benefits programs. Right, it's because there's always a (more expensive) entitlement program to catch people who can't get the benefit: like EISEP and Medicaid.

So the point is, let's get healthcare on track now, and not let the welfare system catch the people who fall through the cracks of our less-than-optimum healthcare system.

Doesn't it make more sense to manage ahead of time and avoid the crisis response system when healthcare as usual fails to provide? That's why we need healthcare, not welfare.

I'm Back

2008-08-24T09:09:00.003-04:00

In more ways than one. First, my departure from the world of disability is proceeding apace, although there were some bumps in that road. Second, I have been able to do some travel, in particular a visit to Washington, D.C., to attend a conference sponsored by the Centers for Disease Control. But now I've decided to start writing again, and the first thing that needs addressing is the needs of the disabled population, older or otherwise.

Yes, we all know that New York State is in a budget crisis. Yes, it is expensive to provide the safety net that is mandated in the New York State constitution:

The aid, care and support of the needy are public concerns and shall be provided by the state and by such of its subdivisions, and in such manner and by such means, as the legislature may from time to time determine.

There are a number of programs that seek to address that mandate. Medicaid, the joint Federal/State program, is one way to secure support for the needy. Medicaid, however, cannot be the only means. First, to this observer, it seems to be a reimbursement-driven program, not a needs-driven program. Second, it requires virtual impoverishment, not necessarily a good criteria of need. Finally, there are less expensive options. But Medicaid is a de-facto mandate that does not require a lot of thought to fund: it is there by fiat, so the tough decisions are removed.

Could it be that the legislature, as cited in the constitution, does not take the other options seriously, or that it lacks the political will to vote more expenditures (headline: "Legislature increase spending in some-such program"). Is it just easier to "cut" spending on non-mandated programs but in the end spend more on the mandated ones?

What about EISEP, the Expanded In-Home Services for the Elderly Program? EISEP has a long history of leveraging a wide range of supports, both formal (i.e., funded services) and informal (i.e., non-funded support from friends, relatives, or neighbors). The result is less "formal" costs for the same services, and those formal costs are the ones paid from the State's budget. I would argue that upping the budget for EISEP would -- in the end -- reduce State spending, but that would require somebody to stick their neck out and ask for increases when, in today's political climate, that may not be the politically correct thing to do. So soak the taxpayer again, but let them think it's a good deal!

Why Institutions?

2008-05-31T21:25:00.002-04:00

They have been a couple of interesting happenings since I lasted posted here. The most important, I believe, is the recent news that Albany's ubiquitous care provider, The Eddy, is developing new types of housing. The Eddy has always been ready to innovate, to try new things, so it's not surprising to see The Eddy working on new plans for residences. But there is still something that, in the words of Peter Griffen (of "Family Guy"), really "grinds my gears." It's this nagging feeling that people's life trajectories are on the wrong track. No matter how nice the residence may be, why do so many people wind-up in institutions?

A colleague of mine, Constance Laymon of Consumer Directed Choices, has been known to point out that persons wind up in institution even though they have been convicted on no crime. Why do people find themselves in these total institutions? Isn't there something wrong about that? Yes, I want all nursing homes swept away with a sweep of my arm. No, i don't believe that an person should be in those environments.

So what's my alternative? I don't really have a good one, but revamping the concept of the nursing home is essential to human dignity. First of all, though, the structure of the total institution has to be eliminated. (Just to clarify, institutions are a special category of group quarters: prisons and nursing homes are good examples, secure facilities where the resident does not have authority or ability to freely travel.) It's hard to maintain one's sense of self, of individuality, let alone self-respect, when living in an institution. That's no way for people to live in the twilight of their lives, and it's no way for the younger to have to spend their entire lives. This is essential: the sense of self, of intellectual integrity and independence, must be maintained, and any environment that structurally stifles those things is unacceptable.

Bravo to The Eddy for trying new tacks in long-term care, but there's still a long way to go.

Things are getting smaller.

2008-05-17T20:30:00.004-04:00

Things are getting smaller: did I say that already? Well, it bears repeating. After four weeks of not moving around a whole lot, I'm starting to move around again, and with that, the world starts to shrink. On Monday morning the 21st, the morning after my accident, the world was about the size of my bedroom. It took a couple of weeks before I could move about with some ease, but as I started to move about easier, as the leg pounded less as I tried to swing it over the side of the bed, suddenly the distance down the hall seemed to shrink to a manageable way to travel. The whole world seems like that.

If you happen to be unable to get around, the world seems like a really big place. I still don't walk all that far without tiring, so the distance from the parking garage at work to my office is about all the walking I can do; in fact, the walk back seemed downright un-doable the the other day. If I have to, I can walk down to the end of my block to get the bus, which saves me the need to step on the clutch of my Subaru; what happens if there isn't a bus stop at the end of the block? What if I had to walk two blocks, or ten? And then if that walk can not happen, the world is an infinitely bit place -- make that, Albany is an infinitely big place. You can't get there from here.

In the City, bus options are pretty good, at least where I am. To my south, in Delmar, it's going to be a bit further to the bus stop. What happens to folks who "age in"? What happens when people don't have the ability to walk as far, or to drive, and their options to travel are taken out of their own hands? My mother, on Long Island, would say that the worst thing that ever happened to her was not being able to drive (I pointed out that living in a country that had gone to war four times, World War II, the Korean War, the Vietnam War, and the Iraq war -- Kuwait hardly counted -- was a significant social upheaval, but she missed that point: I don't think she would be alone). It is scary how we don't have a way to, how shall we put it, degrade gracefully (that's a communications term I picked-up years ago about how communications systems should be designed as they go through the EMP, electro-eagnetic pulse, associate with a nuclear detonation).

The point should be taken, that people are going to become increasingly limited in their transportation options as they age, and if they wish to age in place, to stay in their homes, to be able to get around, they are going to need some transportation infrastructure when their own means fail. Of course, they could be like me and get a disability of sorts earlier on. But then, my disability is of the passing nature.

So for me, right now, things are getting smaller. That may well be only a temporary experience.

Elder Abuse?

2008-05-10T23:07:00.002-04:00

Is elder abuse an issue here in the Capital Area? The Eddy, the regions ubiquitous provider of human services, was the subject of an article in yesterday's Times Union. According to the TU, "The Eddy will offer a 24-hour hot line, counseling, emergency housing with nursing care if necessary and, in partnership with Albany Law School, legal advice." If this is a needed service, then this is a sick society: according to the article, "According to the National Center on Elder Abuse, there are between 820,000 and 1.8 million seniors abused each year in the U.S."

But we've really known for a long time about elder abuse. Years ago - - I haven't followed this lately, maybe still - - it was headlined in the newspapers as "granny bashing": grandmothers getting beaten for the social security checks and the like. And it's an international issue, as noted previously. So why, on top of everything else that the elderly have to deal with, are they also the subjects of abuse?

Nothing is really new, is it? The elderly are the weak. The weak are the victims. But isn't it more than just wanting to steal somebody's social security check (or life's savings)? People in nursing homes have been abused by staff: what a paradox, the caregiver, the professional caregiver, becoming the abuser. There are some philosophies (Marxism may be one) that argue that social inequality is the root of all evil; that's certainly a nicer scenario than one that people are just evil. But let's not toss Marxism away too easily. By denying people the ability to meet their basic needs, to force people to live on the margins of society, what do we expect to have happen? By creating poverty, by maintaining poverty, we ourselves lose the moral high ground: so who really is evil?

Safety Nets?

2008-05-05T10:23:00.016-04:00

The headline in this Sunday's Times Union, one of the headlines, the one on the far right, so I guess the most important headline, above the fold, told us that "Slowing growth now hits insured." And they added that "Even those protected by employer plans find rising share of costs, limited coverage mean a medical emergency can plunge them into debt[.]"

Let's take a minute to get our minds around this. If you don't have medical insurance and you get sick, you have to spend down to the Medicaid threshold to be eligible for state-sponsored insurance. You basically have to impoverish yourself. You don't get thrown out of your house, but you may find a lien on it. You get to keep $725 a month, if I recall correctly, and that's a grand total of $8,700 dollars a year to live on. I think I have that right; I think that's really poverty.

But let's also get to this other point, the one about the insured who also wind-up in debt. So let's say you have a job, making more that $8,700 a year, and you don't have the correct coverage for exactly what ails you. So there's a deductible, or a co-pay, or a limit on coverage. So people go into debt: they don't send their children to private school, they don't make improvements on their houses, they don't have their hair done, they don't go out to dinner, they don't have the oil changed in their car. For how many years? How many illnesses?

Why do people have to go into debt if they get sick? Whether or not they have insurance, whether or not they have "enough" insurance, why do people have to get poor to get better? Am I missing something here? Why does good health get tied to good wealth? This is a scary idea, that if one has money then one has access to health care, and an absence of money means an absence of access to health care. (Remember that line from The X-Files, the "cigarette smoking man" to his son, "Access, agent Spender: it's about access.")

What about access? Let's read the New York State Constitution,Article XVII,Section 1:

The aid, care and support of the needy are public concerns and shall be provided by the state and by such of its subdivisions, and in such manner and by such means, as the legislature may from time to time determine.

Are we missing some there? If people have to go into debt to pay for their medical care, with or without medical insurance, that sounds like the definition of "needy" to me. Where is the help for these people? Why should anybody have to go into debt, in many cases ruinously so, just to live a healthy life, if not just to live, period. Don't we have a responsibility to provide "aid, care and support" to all? Isn't it time for a universal and all encompassing health care plan for all?

Whose job is insurance?

2008-04-30T20:36:00.003-04:00

The news today, besides the weak economy, is that John McCain is proposing a health care plan for people who would have problems getting health care: people like him, for example (cancer history). It's still a private industry plan, say some of the critics. That's an interesting point; or, it's interesting that they are making that point. Is it wrong to propose a private-industry-based health-care plan?

Are there some things that are too important to be left to the private sector, some things that are so important they need to be done only by the government? We take for granted that some things are the exclusive purview of the government, although lines sometimes get blurred: foreign policy (but then there's Jimmy Carter off to the middle east); military affairs (not counting Blackwater, or, for that matter, the entire military-industrial complex, just as Dwight Eisenhower warned); and there's also the mundane, the highway departments, local library districts, and we all went to town-hall to get marriage licenses (or those of us who could, did). So we can all pretty much agree that there are some things that governments do (beyond the Hobbsian essentials of smoothing the wheels of social and economic transaction). So, if we all believe that governments should be in charge of paving the roads (even if a contractor actually lays the asphalt), why should providing for health care be any different? For anybody, for that matter: not just the problematic cases. Aren't there some things that are just too important, too essential to be left to the vagaries of private industry and the free market?

How does a 78-year-old woman starve to death in her own home?

2008-04-26T14:04:00.007-04:00

This one calls out for something, something real, something dramatic, something substantial, something to make a difference. Yes, there is elder abuse in the world; friends of mine have devoted themselves to the cause; it is an international cause, in fact (see the International Network for the Prevention of Elder Abuse); but what is so shocking is how this happened. About a mile from my own home here in Albany, this woman starves to death in her own bed in a home she shares with her daughter.

Let's not try anybody right now: let's just look try to find the social realities that surround this case. What has been reported is that a 47-year-old woman shared a home with her mother, and, according to the Albany Times-Union of Saturday, April 26th, "At some point, and for reasons that remained unclear Friday, she stopped feeding her mother enough to keep her alive." So, here are a couple of ideas on that:

Nobody noticed the older woman hadn't been seen around for a while? Maybe not a call to the Elder Abuse Hot Line (New York State Adult Abuse Hotline: 1-800-342-3009, press option 6 [options six?]) but couldn't somebody have been gotten into the loop? Maybe -- maybe -- all it would have taken would have been a phone call -- to the local Office for the Aging or Department of Social Services -- to have a case manager become involved.

How does an older adult -- apparently confined to home or even to bed -- not get into the community-based long term care system? How does a person reach the point where they cannot feed themselves and not have an aide? Don't people know to call for help? Isn't that what the blue pages in the telephone book are for? [They still have the blue pages, don't they?]

Why do we in the aging services network not know about our (potential) clients unless they throw themselves at our faces. Shouldn't we have a way of knowing these things?

Shouldn't the care system be a true cradle-to-grave network where a person is never far from (life-sustaining) help when needed? This is a tough nut to crack: how do we track somebody through their lives so that we are there when they need us? Is there to be some eye-in-the-sky that all-knowingly sees people, tracks their records, determines when they need aid? It's important to every person that the needy not fall through the cracks, so important that this question needs to be asked.

We've done a pretty good job at getting all people into some parts of the social services system, either through a type of default, this is how it's done mechanism or through global awareness. The Social Security system nets people seemingly from birth; all people age 65 and over seem to know to get into Medicare. Why can't we get people into the aging network of services before they starve to death?

There are so many people who are slipping through the cracks, in one form or other, that we need to reexamine what it is we are doing with our service system and why we miss people who are truly in need. We should know where the elderly are, we should know whom among them need support, and we should be able to offer that support. Forget arguments of costs of community based long term care versus nursing homes or other residential facilities. This is a question of basic morality: people should not be abandoned to starve in their own beds, and if they do they've been abandoned by all of us.

Two things today

2008-04-24T14:33:00.012-04:00

Personal Update:

I'm a bit more comfortable now, but my leg is still not quite up to trips off the second floor. Oh, but the way, day-time TV is a vast wasteland.

From today's Paper:

A brief note on an article out of Schenectady, there will be a diet and diabetes program for children and adults living with diabetes, "The Diabetes and Nutrition Awareness Program." This is a good idea, and in fact ought to be expanded into a universal nutrition awareness and diabetes screening program. In an era when diet and the increasingly early onset of type II diabetes have been linked (risk factors generally are increasing age, obesity, and physical inactivity), promoting good dietary habits is clearly a positive public health undertaking.

Consider for a moment that preventing diabetes (i.e., preventing early -- or any -- onset of type II diabetes) would have tremendous benefits not only for the day to day quality of life of the individual but also for the costs of treating long-term a person with diabetes, costs that ripple through the health-care system. Any expenditure on prevention would certainly ultimately pay rewards many fold.

Which raises a question: why don't we spend more money on prevention? Shouldn't we be blanketing schools and senior centers with nutritional awareness education? Shouldn't we be plastering bill-boards and the pages of newspapers with pubic awareness ads extolling the virtues of healthy eating and exercise (and, to go along with that, making sure there is an awareness of the problematic nature of the fast-food diet)? Why is this a bad idea?

Are we afraid of offending the fast-food industry? Certainly by now we are aware enough of the link between diet and health issues, and we are aware of the link between a fast-food diet and health issues, so why be afraid of offending anyone? Or does it just seem unseemly for the state government (or the feds, for that matter) to go to war with an entire industry of food providers? Can that really be all there is to it?

Irony

2008-04-22T13:47:00.000-04:00

I'm writing this, my first CACAD blog entry, at an odd juncture in my life. To give the punch-line away first, I've just transitioned from an aging issue to a disability issue. My mother, for whom I've been a long-distance caregiver for the past several years, died on April 15th; on April 20th, I was involved in a motorcycle accident.

I write this, I'm lying in bed, in my second-floor bedroom, without a real prospect of going downstairs. No, the house is not built well for movement on crutches. It has three living levels with stairs up to the main floor, more stairs to the second floor (where I am now), and a downstairs with -- you guessed it -- stairs. So my first exposure to disability is that my house is not very disability-friendly. In fact, the irony is that I'm trapped in my own second-floor bedroom: me, someone who should know better.

O.K., there were options. I might not have struggled up the stairs Sunday night, but it is my bedroom, where I'm comfortable (the lumps in the bed are all in the right place), so it's where I wanted to be. And I'd already gone up one flight of stairs just to get to the first floor, so I just kept going. And then there was the big option: seven years ago, when I bought this house, I could have opted for a ranch instead, using proper foresight.

Is it really even an issue, that houses have two or three floors of living space and -- as we age-in -- we can only manage one (without substantial expenditures or efforts)? A friend of mine once told me he and his wife were moving to "an old-man's home," a single-level ranch, long before he was unable to negotiate stairs (he still has no problems, but he's there now just in case).

So here I am, supposed to have an idea about housing issues and all that, and I'm trapped anyway. Does one have some type of social or personal responsibility to plan for a life trajectory that will, with a fair level of inevitability, find one as an older adult with limited mobility? Do we all have to plan, to say there is some essential -- and specifically required need to plan for the inevitable decline. Am I socially irresponsible -- or worse: morally bankrupt -- for not having already gone to the old-man's home in preparation for the disabilities of older age. And let's not forget that a disability can affect a person of any age: are we foisting fundamentally inappropriate homes on people, people who at any moment be living in suddenly inaccessible residences?

Are multi-level home (e.g., split-levels, high-ranches, Victorians, etc.) the social equivalent of drinking-and-driving, especially for people over a certain age? (The young -- especially with families -- may be indulged, but of course there's always that possibility of the unforeseen disability.) I'm not sure. I suspect that it is not unreasonable that people should have expectations in line with reality. I know that for every day a person ages it is increasingly likely that he or she will become impaired. Some people, like my mother, will be forced from their homes, in her case at the age of 81, just a year before her death; some (like my maternal grandparents) will live at home (in their custom-built split-level) in essentially good health and unimpaired mobility until their deaths. There's me, presumably only temporarily stranded up here (but there was a guardrail about an inch from neck on Sunday).

Travelling around Albany, we see all manner of multi-story dwellings. The old housing stock along Madison Avenue and State Street around Washington Park is typical of much of the city (I think of this as the generic inner-city brownstone-type, walk-up-type house: that may be somewhat inaccurate, but it gets the idea across). The outer areas of the city, the less urban, more suburban neighborhoods, look like the typical suburban neighborhoods anywhere: that is, multi-stories. It is what it is.

Where does that lead us (or, where does that leave us)? Our housing stock is what it is. Older adults and the disabled are perhaps among the least likely (economically least capable) to have new homes built (or existing ones remodeled) to fit their needs. I do not have an answer for these questions, at least not right now, but I do believe that there is a need have housing match the needs and capabilities of the population, and that we all have to think about this.