Only Anecdotal

No numbers, just stories

Posts Tagged ‘advocacy

Aging and Disability

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Last week I had the opportunity to walk into the formal face of my double-faceted work existence as I attended both the Massachusetts Home Care Conference and the Massachusetts Statewide Independent Living Council (SILC) Conference. Back-to-back, I witnessed duals (not duels… although I wonder), and the very notion of what it means to be a service provider in this changing world.

A word from Christine Griffin perhaps brought it all back home to me. To paraphrase her lunchtime talk at the SILC conference, she discussed the notion of the newly aging–a great difference as I have seen between the newly sixty-year-old Vietnam-era consumer, and the ninety-five-year-old WWII veteran. Remember the clash of cultures back in the day? Depression-era stoic survivor not wanting help, versus Civil Rights-era champion demanding help–and equality, to boot? It is enormous, and Ms. Griffin’s statement about meals on wheels (“I am not going to accept the Salisbury Steak; I may just want to order a pizza!”) hits the nail on the head.

I find a lot of resistance to “help” from that Depression-era crowd. It seems to me that they are proud of their achievements, and do not cede their independence easily. But it is more than that.

I am forever frustrated–annoyed–by the idea that granting freedom to people by giving them the assistance they need to live life fully is an entitlement, and that some people are more entitled than others. For some strange reason, we feel that the compliant survivors of the first half of the nineteenth century somehow worked to earn services, and Medicare, and our help if they need it, whereas a younger person who has the misfortune of developing some life-altering illness or disability cannot easily receive the same level of support.

This is true in terms of the sheer availability of the most basic services, like homemaking, as well as at an administrative level where the power clearly lies more in aging community than in the younger disabled world.

I know this is always a controversial subject, but numbers tell a great story, and by numbers I mean distribution of money. We are supposed to collaborate in our aging and disability consortia, but too often I see a competition where there should never be one.

The services through the aging and disability consortia right now include the options counseling program–which was in its root a real collaboration between the two worlds–and the care transitions programs (STAAR, Coleman Coaching programs) meant to help prevent hospital readmissions of specific groups of people. It is absolutely astounding to me that in the second category, these programs seem to be popping up, presumably a product of aging and disability worlds, but they are the elder service agencies that own them. Was there ever any sort of collaboration? If so, when? Or has the disability world been present only in name but not in voice? How very sad.

At the Home Care Conference, I was delighted to meet up with a few of the Information and Referral staff from my Independent Living Center’s partners in the Aging world. When the ADRC project began over four years ago, our area included five of the Aging Service Access Points, and there were monthly meetings with I&R and options counseling staff. Over the three years that we met, I learned an enormous amount about how agencies that serve the same population with the same programs can differ so much. We learned how we are innovative in our own ways, perhaps the best ones for our specific communities; we learned to work together. And best of all, we all really liked one another. It was a key to our success, this sharing, and I miss it. I think that if we are ever to rediscover that spirit of collaboration, it will require more efforts like this, coffee, stories, community. Formerly quarterly reports and meetings are simply not enough. We need to meet monthly, informally perhaps, in smaller groups–often enough that we feel close, and not limited to the pressing demands as we are turning to one another for advice and support.

It is obvious why disabilities of all sorts and the aging community would want to come together: politically, we are much stronger as one unified voice than we are as separate voices asking for the same thing. Divided, we are easily conquered as well.

So, we need to step back, and listen. We need to tear apart our misconceptions, our silos. Oh–I know how trite this sounds as we have all heard the silo speeches before. But in fact, even in the dearest community to me, I saw how separate we all are, the aging services, disability services, medical services, technical services. It absolutely astounds me to keep going to meetings and conferences and hear all the same stories told in different ways, with great ideas that somehow are not–still!–uniting. So much potential in all of it, especially now. And now is the time to come together and act.


Written by Only Anecdotal

17 Sep 2012 at 7:37pm

Why War Is Hell

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He was alone in the hospital room, his wife gone for several years. The rest of his large family lived relatively nearby, but he said he saw them rarely. The man was near ninety years old, and now quite sick.

Today, on Memorial Day, I am thinking about this man, and many others I have met over the years.

I am thinking about my mechanic back in St. Louis, a man who was capable of figuring out (at small expense to me) my first car, a 1972 Chevelle that had been altered from automatic transmission to standard, three-on-the-tree. He worked in a garage where his wife kept the books and his buddy worked on the cars, and he oversaw things–telling stories and doing the car work, too, when no one else was there to talk to.

I am thinking about my neighbor, who was not such a storyteller, but one subject did inspire him, as it inspired many other people I grew up with–people whose tales became more real after my visits to the landing beaches in Normandy, after I heard stories, too, from the people who lived there. I am thinking about my uncle, his South Pacific stories. I am thinking about my dad who missed Korea by a weekend–he went home on leave before he was to depart, and the conflict ended.

When I am working, I am mentally searching through the grab bag of possibilities for services. So, asking the question to veterans often prompts a lot of memories–stories that typically involve time, place, but stopping short of specifics or feelings. “Some things should not be discussed,” the man I first mentioned told me. But that day, this veteran told me about the uncertainty, the people he thought he might have killed, friends he saw die. As I left him, I wondered how many times he had told those stories. I wondered about his life now. I thought about courage, and the notion that courage involves shielding people back home from the horror of it all. I don’t know that it is ever possible to do that. Yes, war on every level is hell.

I have a book that I carry around that has descriptions of VA benefits and who is eligible for them, but it is a system that I find quite baffling. In many ways it is easier to understand and navigate, but it is also so separate from the state services I know, so separate also from the rest of the medical world. I am used to walking into busy hospitals that greet their visitors with health messages, gift shops, coffee. The VA hospital greets the public with flags first.

But before they may reach the VA healthcare system, veterans have to enter the system. Veterans are not automatically handed benefits, but have to ask for them. If disabled during service, they have a determination of percentage of service-connection to determine the level of benefits. So, for that disability, the VA works quite well. But, as a veteran’s agent once said to me, “Don’t get hit by a bus and expect the VA to cover it.”

Towns in Massachusetts have given cash benefits to veterans who need them since the Civil War. And there are other federal programs like Aid and Assistance that help veterans (or surviving spouses) as they age and need more help, regardless of the veteran’s service-connected disability. I have met some great people who work for the VA, and as veteran’s agents in our towns. I have seen people get help that they never realized was available.

That said, it can be a difficult system to maneuver, with a great deal of paperwork, and long wait times for benefits.

So I wonder, if we are struggling right now to meet the needs of the veterans who ask for help and are qualified for it, how on earth do we expect to meet the needs of returning veterans from our wars today?

Associated Press reported on May 28 that forty-five percent of the returning 1.6 million veterans now are filing disability claims with the Veterans Administration. War is hell, surely, but from what I see, the war truly begins when it comes back home.

Often I see people who have served the United States, lost love, lost life, lost hope in many ways, but the saddest realizations come when people find that the promises–we will always cover you–cannot be fulfilled.

It is an enormous sacrifice to serve, we all know, but when we go into wars, it is the conflict at hand and the costs directly related to fighting the war that get the money. After the war has ended, at least on paper, it is too easy to forget. It is easy to dismiss the same old stories that we family, friends, spouses, kids hear over and over and over. It is easy to forget the service connected nightmares, the loss, the plea–I was there for you when you needed me, my country. Now where are you for me?

Written by Only Anecdotal

28 May 2012 at 8:52pm

Not Ready for Prime Time?

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The son of the patient was nearly red, and gesturing when I arrived.

“Dad is not ready to go home yet!”

A hospitalist stood in the hall, looking at the floor, then looking up every once in a while to make a comment.

“We cannot change the decision.”

“There is nothing we can do.”

“It is not our decision.”

“It is the system.”

The System.

We all hate The System in its bureaucratic anonymity. And we especially hate it when someone tells us that The System is responsible for a decision that will significantly alter our expectations. The son of this particular patient had expected what had happened with his mother years before: his father would be in the hospital for a few days, then go on to the neighborhood skilled nursing facility for a few weeks of short-term rehabilitation. But times have changed, and despite the son’s own illness and compromised ability to care for himself, let alone anyone else at the time, Dad had an overnight at the hospital, but now was about to go home.

“So where do I go to complain?” the son yelled back at the doctor.

A fair question, in any circumstance. It should not be a difficult one to answer, either. But it was, or so it seemed, because the son was still yelling, and the surrounding staff were still telling him that they were sorry.

And so, the patient’s son decided to complain to me. “Look! Look! This is what they are doing.”

He handed me a discharge summary, signed and ready to go. And beneath that was the paper that explains how to appeal to Medicare if you disagree with a discharge.

So, the paper does tell patients where to go to complain–and actually, the patient’s son was in the process of following suggestion #1: “You can talk to the hospital staff, your doctor and your managed care plan (if you belong to one) about your concerns.”

But getting to suggestion #2, which involves calling the area Quality Improvement Organization (Masspro here), is not obvious to most people, even Medicare consumers. And finding that Important Message from Medicare instruction page buried within a stack of paperwork on a sick patient’s bedside table is not terribly likely, even if the patient does remember signing something downstairs–wasn’t it about HIPAA?– and even if someone has some vague idea that there must be a higher authority in the hospital, or beyond the hospital, that takes complaints–and responds to them.

So, I wonder how many patients file appeals about their discharge. I have to admit that after many years of hanging out in hospitals, I would never have guessed that my insurance company was the place I really needed to call if I disagreed with a decision that I assumed a doctor was making.

I also have to say, most people who do not feel ready to go home are never this loud about a discharge decision. Loudness upsets everyone, and often causes more problems than it solves–or so we think. Most people disagree quietly, if they think to disagree at all, and they go home. There, if things are bad enough, they may remain unsatisfied about their health in general, and possibly with the entire system meant to monitor it.  And they may well try to ignore doctors and hospitals as much as possible.

So, just in case it ever happens to you, and you are on Medicare, be prepared. If you are admitted as an inpatient to the hospital, and think that you are still sick enough that you actually want to stay admitted as an inpatient in the hospital, you may have to pay for the extra time if you do not appeal before midnight of the planned discharge date. Figuring it all out after the fact, when you feel better at home, can be an expensive option.

And of course, an impossible one if you do not notice that Important Message from Medicare until after your hospital bed turns into a pumpkin.

Now, the sticky part in this entire situation is not only the frustration of the discharge, but the fact that this patient was never actually admitted as an inpatient to the hospital.

Who knew?

Certainly not the patient, or his family, who had no idea that there was a distinction between inpatient and outpatient if a person was lying upstairs in a hospital bed. Doesn’t “observation” just mean that someone is watching over things?

And who really would know? Unless you know. You know if you work in a hospital, I hope. And you know if you are especially savvy about the healthcare system, or at least Medicare. And you know if you just watched a friend faced with a similar situation. And you just might know if you read all the mail that you get relating to Medicare–it is very possible that there was a big instruction page that you received at some time…

But more on this question next time.

Now, I want to say that I understand that family members should not be using hospitals for respite from caregiving. And I also know that ideally, care that can happen outside a hospital setting should happen outside a hospital setting. But no matter the reason, a consumer or family member should have a clear understanding of how decisions are made, and who is making them.

And I also want to say that understanding what happens in this world of hospitals does not mean that we agree with the way care is administered in them. Or that we do not think that there might be enormous chronic unmet needs in the community that end up in an emergency room because by that time, they have become acute needs.

Part of the difficulty in communicating with consumers about The System comes simply from working in The System. At a certain point, we begin to understand how these rules work, and why they exist, at least in our own little part of it. But the danger is that in that process is forgetting how twisted and confusing it all is to the people who do not encounter this world on a daily basis. And ironically, theirs are the lives that are most affected by the decisions that are made during that hospital stay.

It requires an intentional effort to make sure that hospitals give people a way to interact with their decision-makers effectively, and on a human level. Without that in place, without giving the consumer the ability to be heard, we all lose out. We blame our own frustrations and those of the consumers on a large, anonymous entity that is not only omniscient, but omnipotent, as well.  There is no meaningful dialogue. I imagine that in the long run, this is also very expensive.