Laura Hershey: Writer, Poet, Activist, Consultant Rotating Header Image

Health Care Policy

Last Word on the MDA Telethon (at least for this year)

Ego and Soul

Yes, the Telethon was bad again this year, at least the bits I watched. One thing that continues to amaze me is how big a role Jerry Lewis’ big ego plays, all the way throughout the Telethon. Here’s one late-night quotation that I bothered to write down:
“This child in the [Boston] Hospital had muscular dystrophy, and I went to see him, and he smiled when I walked into the room, and he grabbed my hand, and he said, quote, ‘I’m glad I got muscular dystrophy, because that’s why I met you.’ I rest my case. If there are naysayers out there, and if they’re uncertain as to the validity of my soul, trust me – it was a moment in time that takes me through the program in 2001 all the way through 2010.”

I don’t know anything about Lewis’ soul, “valid” or otherwise. I only know that his presentation of disabilities distorts reality, making it appear as though a cure for muscular dystrophy is both imminent and sufficient. In fact, what we need is a society committed to including and supporting all people with disabilities, regardless of particular diagnosis.

More Reasons to Disbelieve the Telethon

It’s not just the pity mentality that causes harm. As activist Nick Dupree argues in his blog, the Telethon creates an illusion that people with disabilities get everything they need, courtesy of private charity. As Nick points out, nothing could be further from the truth. Coordination and necessary equipment are sadly lacking, and vital home care and other services are being gutted in many states. And MDA itself doesn’t even provide what many people have come to believe it provides. Read the scanned copy on Nick’s site of the letter from the CEO of MDA, highlighting all the things they no longer offer to their clients.

Post Columnist Gets It!

Susan Greene just wrote an excellent column for the Denver Post explaining our objections.

20th Telethon Protest in Charleston

The stalwart activists of Charleston, SC protested the Jerry Lewis Telethon yesterday, just as they have for 20 years since the late great Harriet McBryde Johnson started raising hell about it in 1990. Here are some photos from the Charleston protest, and an unpublished letter to the editor by Harriet’s friend and colleague John Polito.

One More Word from Me

And here’s an brief video clip of me talking about the Telethon.

Five personal reasons why I want our lawmakers to vote FOR the health care reform bill, imperfect though it is…

Five personal reasons why I want our lawmakers to vote FOR the health care reform bill, imperfect though it is:

1. I hope that some of my disabled sisters and brothers currently in nursing facilities will be able to leave the institutions, and receive the support they need under the bill’s plan to improve Medicaid. Among other provisions, states would be offered a 6% increase in the federal Medicaid match, to encourage them to provide community-based personal attendant services.

2. I hope that some future people with disabilities — which could include any of our aging parents, our returning veterans, or anyone else among us — will be able to get the assistance they need in their own homes, without impoverishing themselves to qualify for Medicaid, through the bill’s long term care insurance services program.

3. I hope that some of my attendants who are currently unable to afford health insurance, or unable to obtain it due to pre-existing conditions, will finally have access to health care. They work incredibly hard supporting my and other people’s health, independence, and quality of life, yet this important job does not provide them with employer-sponsored health insurance. I sincerely hope there will soon be affordable, meaningful, portable coverage available to them.

4. I believe, deeply, that health care is a human right. This bill takes an incremental step toward fulfilling that right, for some people. It’s not enough, but it may be a start.

5. I want to defeat these assholes.


I woke up with this thought today, and decided to write it down, illustrate it, and put it out there in cyberspace.

I'd rather have a machine breathe for me...

Does Dartmouth Study Distort Health Spending Data?

In the ongoing health care debate, it seems that we hear more frequently about patients costing too much money, rather than about the vast amounts being hoarded by the profit-hungry corporate insurance system and/or wasted by senseless decisions in both the private and public sector.

A current article in the New York Times describes the findings of a study conducted by Dartmouth health policy researchers, which criticizes hospitals that provide extensive treatments to people who are “dying.” But, as the article points out, the Dartmouth study only included figures relating to patients who did die. It leaves out very sick patients who received treatments and lived, or even got better.

For example, the article describes the case of 71-year-old Salah Putrus, who had a long history of heart failure and was hospitalized in order to be evaluated for a heart transplant. Despite his age, doctors at UCLA Medical Center pursued proactive diagnoses and treatments. “They changed his medicines to reduce the amount of water he was retaining,” the article reports. “They even removed some teeth that could be a potential source of infection. His condition improved so much that more than six months later, Mr. Putrus has remained out of the hospital and is no longer considered in active need of a transplant.”

This is an important corrective to the typical arguments against spending money to treat elderly and sick people. “Because Dartmouth’s analysis focuses solely on patients who have died, a case like Mr. Putrus’s would not show up in its data,” the article explains. “That is why critics say Dartmouth’s approach takes an overly pessimistic view of medicine: if you consider only the patients who die, there is really no way to know whether it makes sense to spend more on one case than another.”

Another study, in fact, demonstrates that in treating people with heart failure, spending more does result in higher rates of recovery. The hospital with the highest rates of spending on heart failure treatment demonstrated one-third fewer deaths six months after an initial hospital stay. This is not futile spending, but rather spending that does what medicine is supposed to do: save lives and improve people’s health. To argue against such spending is ethically indefensible, yet such arguments seem to be gaining ground.

Policymakers need to consider different sources of data when considering expenditure decisions. In the words of one epidemiologist quoted in the Times article, “If you only look at the failures, you miss the benefit.”

Long-Term Care: the Key To Successful Health Care Reform

With all the shouting and animosity at town halls and on blogs, is it possible to find any common ground in the current debate around health care reform debate?

One side argues that meddling in our market-based insurance system will limit consumer choices and cost a fortune. Another side contends that we’re heading for disaster if we don’t do something now to extend coverage to more people.

In a sense, both sides are right. The current situation is clearly untenable: Around 16 percent of Americans have no health insurance, with that number growing as people lose jobs and benefits, and health care costs keep escalating. But trying to stretch existing dollars to cover those 46 million uninsured people probably won’t work unless we make some more fundamental changes.

One necessary but overlooked change involves long-term care — the ongoing medical care, hands-on support, and domestic services that disabled and elderly people need, sometimes for many years. Long-term care is a major cost driver within the health care system, now accounting for about 12 percent of all health expenditures. Medicaid and Medicare (our current “public options”) pay the bulk of long-term care costs.

In 2002, U.S. national spending on long-term care totaled $180 billion. Nearly two-thirds of that amount went to institutions such as skilled nursing facilities — even though most people would much prefer the more cost-effective option of home health care, getting help from personal care assistants or nursing aides whom they or their family members train and supervise. Nursing home placements cost, on average, twice as much as home care.

Yet federal policy is biased toward institutional care: Every state, in order to receive Medicaid funds, must pay for nursing home placements for eligible clients. In contrast, those progressive states that want to offer the choice of home care must actually obtain federal waivers to do so. In-home care is the exception rather than the rule. This leaves home health services underfunded — or, in some states, completely unavailable — and thus forces people to give up their independence to enter nursing homes.

I have friends who found themselves inhabiting a tiny room with a roommate they didn’t like, with a dull daily routine, and a life lacking in opportunity for excitement. Why? Because they needed a little help each day, and had no access to home care.

I’m fortunate to live in a state which offers the Medicaid “home and community-based services” option. Due to a neuromuscular condition, I require daily assistance with dressing, eating, showering, getting into my wheelchair, and more. With home care, I get to live in my own house, write for a living, and raise my child, while receiving the support I need to stay alive and healthy. Without it, I’d be forced to live in a nursing home, along with a lot of other people who don’t want to be there.

States that have extensive community-based support programs serving people with disabilities have had noticeably slower growth in long-term care spending than states that favor nursing homes, group homes, and the like, according to a recent study funded by the National Institute on Disability and Rehabilitation Research. Generalizing that trend, we have a better chance at controlling our nation’s health care costs if we shift our priorities and our resources away from institutional settings, and toward home and community-based services.

As baby boomers get older, many more people will need ongoing help with daily activities. Yet none of the major reform proposals address the future of long-term care, either its quality or its costs.

We could remove the institutional bias from Medicaid and Medicare by incorporating elements of the Community Choice Act (CCA). The CCA would establish community attendant programs nationwide, directing funds toward the client’s choice of setting, whether institutional or home-based. Although it currently boasts over 100 House co-sponsors and over two dozen Senate co-sponsors, the CCA has not moved onto the broader health care reform agenda, where it belongs.

President Obama talks about making “hard choices” in order to develop a sustainable health care system. One of those hard choices must be to challenge the institutional bias in our health care spending, to free up billions of dollars which could cover more people and, for those who need long-term care, could provide better services in the community.

Unless we do that, exponential cost increases will undermine our health care system, and another generation of Americans will be consigned to stagnating in nursing homes.

My Proposed Formula for Health Care Rationing

In response to my recent article in U.S. News & World Report, and to some of my blog posts, several people have pointed out this indisputable fact: Resources being finite, some form of rationing is inevitable and necessary. I agree.

So I propose that we start freeing up dollars to improve and expand medical and support services, by denying health care funds for the following:

  • Any health care executive, manager, or administrator whose salary exceeds the average salary of a government or nonprofit executive, manager, or administrator overseeing a similarly-sized operation
  • Any health care system employee whose duties do not directly benefit health care consumers
  • Insurance company shareholders
  • Long-term residential institutions such as nursing facilities, large group homes, “state schools,” and intermediate care facilities which confine people needing support services
  • Profiteering manufacturers and vendors of medical supplies and durable medical equipment, i.e., those whose profit margins significantly exceed the profit margins of other products with similar research/development and manufacturing costs
  • Physicians and other providers who refuse to serve lower-paying consumers
  • Physicians and other providers who discriminate against some health care consumers based on age, disability, sexual orientation, language, cultural background, or other arbitrary factors

Who else would you add to this list? Feel free to post a comment with your recommendations.

Until we make the cuts suggested above, I will oppose any and all current or proposed denials of health care based on disability, age, income, job status, insurance coverage (or lack thereof), pre-existing conditions, immigration status, or other arbitrary factors.

Health care should not be a privilege, nor a commodity. Health care is a human right. Let’s not forget that the Universal Declaration of Human Rights, co-authored by Eleanor Roosevelt, supported by the United States, and adopted by the United Nations on December 10, 1948, included the following statement in Article 25:

“Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.”


Putting My U.S. News & World Report Article in Perspective

I had an op-ed essay opposing futile care policies and health care rationing published in the August 2009 issue of U.S. News & World Report. The print magazine hit newsstands several weeks ago, and yesterday it was posted on the magazine’s website.

Shortly after I submitted my essay, I started hearing some Republicans criticizing President Obama’s health care proposals using some similar-sounding concepts. They warned that expanding coverage to more people would result in “rationing,” and specifically the denial of care to elderly and disabled people. Sarah Palin, who seems determined to move on from her unimpressive term as governor of Alaska to another disastrous quest for national office, is advancing such claims. She has suggested that her baby, who has Down syndrome, would be endangered by the President’s plan. Palin said the following:
“the sick, the elderly, and the disabled would suffer the most under such rationing; and that under such a system these ‘unproductive’ members of society could face the prospect of government bureaucrats determining whether they deserve health care.”

Click here to read Palin’s entire diatribe.

This is nonsense.

As the author of what I hoped was a thoughtful, fact-based argument, I want to clarify that my concerns about treatment refusal and related issues do NOT mean I am opposed to health care reform. I do not believe in the specter of “death panels” concocted by Palin and other right-wing obstructionists. Instead, I’m talking about what is already happening, largely as a result of our profit-driven insurance system: Physicians and administrators employed by corporate health plans feel the pressure to maximize company revenues by cutting costs. They inject their own fears into “compassionate” recommendations against treatment, but this occurs in the context of coverage plans where private money interests matter more than the public good.

The arguments put forward by Sarah Palin, and some others, basically amount to, “My family has good insurance, so why should I care what anyone else does or doesn’t have?” I find this outrageous. Around 16 percent of Americans do not have access to health care. A few of these are people who probably don’t really need it — yet — but many of the rest are families with kids, or adults with chronic conditions, for whom the lack of coverage is a real hardship.

I find it especially ironic that some of the politicians who claim to want to ensure that Grandma and Baby Trig receive all necessary health care are the very same politicians who have no problem denying care to 47 million uninsured Americans, including many people disabilities and chronic illnesses. They claim to fear “government-run health care,” implying that it would be inherently evil, or low-quality, or too expensive. In my view, an expansion of government-funded health care could be far more humane and cost-effective than the services currently offered by the major health conglomerates.

I have experience with government health care — not in England or Canada, but right here in Colorado. It’s called Medicaid, and while it’s far from perfect, for many years it has covered my medical and independent living support needs far better than any private insurance policy would have. And it does so at an administrative cost of about 3 percent — much lower than private insurance industry standards.

It’s true that I and other people with disabilities have encountered problems with Medicaid bureaucracy — unfair denials, bungled paperwork, inaccurate information, and so on. But oftentimes, problems can be resolved through individual advocacy or systems advocacy — something you definitely cannot say about the private insurance industry!

Still, we can expect the rumor-slinging to continue and, unfortunately, the fearmongers will continue to exploit people with disabilities in manufacturing their dire warnings. In a recent, rather hilarious example, a conservative US publication wrote that Stephen Hawking would be allowed to die, IF he were British. Of course it turns out that Hawking is both British and alive. Furthermore, he has some very good things to say about the National Health Service.

Click here to read a good article by someone who has read the entire health care reform bill, and analyzed it from the perspective of care for people with disabilities.

Now my perspective is that the current health care reform proposal is not entirely adequate, since it does not address the important issue of long-term care. ADAPT and other advocacy groups have been urging inclusion of the Community Choice Act in health reform. Without this, I think any changes will be far less successful. Click here to get more information about the Community Choice Act.

Don’t Sacrifice Disabled People’s Lives to Balance Bungled Budgets

In several states, crucial services for people with disabilities are being sacrificed to the politics of fear and greed. We all know the economy is bad, ravaged by orgies of risky investing and corruption. Corporations and other private entities largely created this mess — though certainly federal government agencies such as the Securities and Exchange Commission failed in their watchdog duties — but state governments unfortunately bear the brunt of a diminished tax base. All kinds of social and educational services are suffering, but there is a growing fear among people with disabilities that our right to live independently in our own homes — even our very lives — may be at risk.

In one of the wealthiest states in the nation, California, money is being squandered on oil subsidies, tax breaks for the wealthy, and other misplaced priorities. The strained state budget is being exacerbated by politicians’ failure to find equitable, commonsensical savings. For example, the ACLU estimates that California could save over $100 million per year by suspending the death penalty. Instead, Gov. Schwarzenegger is pushing through cuts in home care workers’ wages and their disabled clients’ hours.

Similarly, Illinois officials seem ready to penalize disabled home care users for the state’s budget crisis. The governor has vetoed the legislature’s budget, and unless the legislature override that veto or comes up with a new budget by Wednesday, money for attendants’ wages may disappear.

This certainly isn’t the first time in history that disabled people have been considered expendable. However, my sisters and brothers in California and Illinois aren’t going down without a fight. Some are staging angry protests. Others are just telling their stories, forcing the public to confront the consequences of political and economic injustice.

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