Health Care in Rural America

I received this HHS update newsletter today. Reading this report reminded me that as stressful and overwhelming as it has been learning about the healthcare options over the last year, we are fortunate that we are in an urban area with access to information, great support and a range of options. Keith and I are actively working to transfer our experiential information into accessible formats which will be available later this year. We are uniquely positioned to bring solutions to market and we are taking full advantage of those opportunities so that others can continue to live productive lives despite healthcare issues.

I hope you have the time to read the report, and I recommend subscribing to the HHS newsletter to learn more about what's happening at the federal level.

Ruth

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From: U.S. Dept. of Health & Human Services <subscriptions@hhs.gov>
Subject: Health Care in Rural America
Date: Monday, May 4, 2009, 8:26 AM

Dear Friend,

Today, the weak economy is hurting Americans across the country. More Americans are losing their jobs, those with employment are seeing their hours cut back, and many are losing their health care or paying more out of pocket for the care they need.  Perhaps nowhere is the economic downturn felt more than in rural America.

Our new report, Hard Times in the Heartland: Health Care in Rural America, highlights the challenges facing Americans in small communities across the country.

Hard Times in the Heartland shows how millions of Americans in rural communities are struggling as health care costs and premiums skyrocket. The report notes:

• Nearly one in five of the uninsured – 8.5 million people – live in rural areas.
• Rural residents pay on average for 40% of their health care costs out of their own pocket, compared with the urban share of one-third.
• In a multi-state survey, one in five insured farmers had medical debt.

You can read the full report by clicking here or by visiting www.HealthReform.gov.

Later today, Nancy-Ann DeParle, the Director of the White House Office of Health Reform, will be meeting with rural Americans in the fourth in a series of White House Health Care Stakeholder Discussions.  At the meeting, she will listen to the concerns of Americans living in rural areas and discuss the challenges they face in acquiring, keeping, and paying for quality health care.  You can watch the discussion live at 10:00 am ET by visiting www.HealthReform.gov.  

Hard Times in the Heartland shows us why we must pass comprehensive health reform this year. You can join the effort to make health reform a reality by clicking here and signing the Statement of Support.  By signing the statement and encouraging your friends to do the same, you are adding your voice to the thousands of Americans across the country who know we cannot wait to pass comprehensive health care reform.

Sincerely,

Jenny Backus 

Department of Health and Human Services

PS.  While you are reading the new rural health care report on the site, check out our new Health Reform quiz.  Do you know whether this country spends more on health care or food?  Click here and test your health care knowledge today.  We will be updating the quiz every day.

Rhetoric Rising

Wow, can't believe it's been three weeks since I posted. Over these weeks, Keith and I have been immersed in the political rhetoric keeping our attenae up for the golden moments when a real discussion of the healthcare issues we live with daily bubble up to the top of the candidates' messaging. As you all know, those are rare moments indeed.

Without a doubt, the economic crisis is deservedly the overarching message delivered in multiple forms as the 2008 presidential election builds to its (vain)glorious finish. Like all Americans we are acutely aware of the rippling impact of the economic meltdown. What has me scratching my head in confusion, is why the candidates seemingly separate the country's fiscal health from its physical health in their campaign stops.

I got the following facts from the National Coalition on Health Care website. There is much more information there, these are the points with which I found myself nodding my head in agreement:

• In a Wall Street Journal-NBC Survey almost 50 percent of the American public say the cost of health care is their number one economic concern.
• Rising health care costs is the top personal pocketbook concern for Democratic voters (45%) and Republicans (35%), well ahead of higher taxes or retirement security
• One in four Americans say their family has had a problem paying for medical care during the past year, up 7 percentage points over the past nine years. Nearly 30 percent say someone in their family has delayed medical care in the past year, a new high based on recent polling. Most say the medical condition was at least somewhat serious.
• Nearly one-quarter (23 percent) of the uninsured reported changing their way of life significantly in order to pay medical bills
• A recent study by Harvard University researchers found that the average out-of-pocket medical debt for those who filed for bankruptcy was $12,000. The study noted that 68 percent of those who filed for bankruptcy had health insurance. In addition, the study found that 50 percent of all bankruptcy filings were partly the result of medical expenses. Every 30 seconds in the United States someone files for bankruptcy in the aftermath of a serious health problem.
• One half of workers in the lowest-compensation jobs and one-half of workers in mid range-compensation jobs either had problems with medical bills in a 12-month period or were paying off accrued debt. One-quarter of workers in higher-compensated positions also reported problems with medical bills or were paying off accrued debt.
• If one member of a family is uninsured and has an accident, a hospital stay, or a costly medical treatment, the resulting medical bills can affect the economic stability of the whole family.
• A new survey shows that more than 25 percent said that housing problems resulted from medical debt, including the inability to make rent or mortgage payments and the development of bad credit ratings.
• A survey of Iowa consumers found that in order to cope with rising health insurance costs, 86 percent said they had cut back on how much they could save, and 44 percent said that they have cut back on food and heating expenses.
• Retiring elderly couples will need $200,000 in savings just to pay for the most basic medical coverage; many experts believe that this figure is conservative and that $300,000 may be a more realistic number

What is not on this list is the immeasurable cost in time and energy of managing post-crisis aftercare. As you know from this blog, Keith and I have experienced this first hand as we negotiated the paperwork, funding concerns, insurance requirements and, oh yeah, actual health issues over the 5 months since Keith returned home to recover. We are fortunate to have the support of family and friends, excellent personal caregivers, good insurance, interested health providers, and, most importantly, the ability & confidence to create our own best path to recovery.

However, all those pluses don't prevent me from falling asleep with an eye on the oxygenation/heart rate monitor to be sure that there are no indications of a restless night. Or making sure that the oxygen tube has not silently slipped off the ventilator because there is no alarm built in to alert you of that situation. (I emailed the company about this the first time it happened in the hosptial. Their reply? "Yes, that's a problem. No, we have no plans to do anything about it."). Or knowing that every piece of paper that comes through the door takes about 20 minutes of your life that you'll never get back. Or any number of other things that can happen to slow the recovery process as we, like far too many American citizens, practice unlicensed medicine managing machines and medications.

Yet, with all that said, we are still firmly in the category of the lucky ones. Keith is healing faster than anyone anticipated (except for him, of course, lol). We have weathered the economic storms and are fortunate to be in Austin which was recently named the best place to ride out the recession. I can do my work from home so I'm not away from the house for long periods of time and Keith has been able to continue his business life from the comfort of bed (much like the European royalty in the Middle Ages).

Without a doubt, we are the exception to many, many rules. Of course we have adapted our life to meet the new responsibilities, but haven't been forced completely off track. The reality is that most folks have been or are being beaten by the healthcare system. They have been forced to compromise their financial resources to maintain their physical health. Every day brings a new short-term choice that sacrifices long-term sustainability. While the dollar cost of those decisions is painfully measurable, the emotional strain is exponential and has a dangerous ripple effect. Once the fundamentals of your world are eroded, the rest falls rapidly.

The United States is the most powerful country in the world and, as noted on the National Coalition on Health Care website, experts agree that our health care system is riddled with inefficiencies, excessive administrative expenses, inflated prices, poor management, and inappropriate care, waste and fraud. These problems significantly increase the cost of medical care and health insurance for employers and workers and affect the security of families. As the 2008 Presidential election winds down, it's time to ask ourselves and our candidates if we are being served. There is an old saying, "when you have your health, you have everything". So, by extension, is it also true that if you don't have your health, you have nothing? We have all worked too hard to have nothing and deserve leadership that understands and acts on the knowledge of the importance of a healthy citizenry to the sustainability of America.

Clipped

Just about 10 days ago the clip that supports Keith's ventilator tubes broke. It's a plastic part that probably cost less than a nickel to manufacture and, in the big picture, doesn't have a whole lot to do with Keith's breathing. However, it still serves an important function. This clip keeps the ventilator tubes at a balanced angle so that the drag on Keith's trache is minimized. This is important because that drag pulls against the tube in his throat and impacts the healing at the intubation site. We put a call in to the home healthcare agency. They told us that it had to be ordered and would take about 2 weeks to arrive. In the mean time, we have been scouring the internet looking for this elusive piece of plastic and actually found the whole ventilator tube kit but nothing would arrive before the end of the month. And, since we expect to have the part from Walgreen's by then, we are just doing what we can to keep the trache tube from moving too much.

As I'm writing this, it has occurred to me that this little plastic clip is a perfect metaphor for the problems with the healthcare system: the big things get taken care of pretty well, it's the little things that cause the most grief and can shift the balance against you. We are managing as well as we can as each of these little things show up on our health doorstep. It's a team effort and among all the tools at our disposal, patience and humor are the most powerful. So, we'll continue to wait for the clip and laugh at the absurdity of it all as we just continue to breathe.

A Letter from Keith Hogan

Keith wrote this letter today and has asked me to post it. He has given his permission for it to be copied, forwarded and otherwise disseminated to the world at large. Please pay particular attention to the last paragraph.

Ruth

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My name is Keith Hogan and I am 43 years old. I was born with a genetic disease known as Spinal Muscular Atrophy Type 2. Additionally, I have severe scoliosis and respiratory problems. I have lived with these conditions my entire life and I’ve never been able to walk. Over time, I have lost the ability to use my arms. I was raised in a politically and socially conservative family. My parents and grandparents raised me to believe I could do or accomplish anything. I was blessed to be born into a loving family that was financially capable of covering my medical expenses that were not covered by private insurance. I graduated from the University of Texas in Austin in December 1989. I began my career as a banker shortly thereafter which continued until February 2005 when my bank was acquired by Prosperity Bank and my position was eliminated.

I looked for gainful employment for a year, but I was unable to find suitable employment and I believe the reason for that is that my health condition made health insurance unacceptably costly for private corporations. I continued on COBRA, but that eventually ran out and I was forced to buy into the Texas High Risk Health Insurance Pool. Not being one to sit around, I began a new career investing in and developing real estate. I eventually became eligible for disability payments through the Social Security Administration and in January 2008 I was able to be put on Medicare.

On February 18, 2008 I was hospitalized due to pneumonia and chronic respiratory failure. Within a week of being admitted, I had an emergency intubation, received a tracheotomy and was put on a ventilator. I had several episodes that brought me close to death. While in the hospital, I received some excellent care from many experienced and caring medical professionals. I also received some substandard medical care administered by some incompetent medical professionals that I believe were overworked and demoralized. I was finally released from the hospital to move back home on May 27, 2008. Since that time I have continued to recuperate but the medical expenses not covered by Medicare and the extended coverage I purchased through Humana are outstripping my financial capacity to pay for the level of care I need. I find myself in a large and growing group of people who have too much money or assets to qualify for the benefits they need, but not enough personal financial resources to pay for the care they need.

I have come to understand how absolutely flawed the entire healthcare industry in the United States has become. I believe that ineptitude, greed and systemic corruption brought us to this state. America can and must do better. This is not just a healthcare issue. For people with disabilities, it is a matter of human rights.

The unarticulated public policy of impoverishing people with disabilities, who might otherwise be a productive part of society, must be abolished. Many people believe that the Americans with Disabilities Act (ADA) levels the playing field. The ADA was flawed from the start, borne of compromise and tried to impose a one-size-fits-all solution for the tremendously diverse group of people with disabilities. To make matters worse, since the ADA was passed, judicial decisions have weakened it to the point of it becoming irrelevant.

At the present time many potentially productive members of society are being warehoused in nursing homes which are funded by Federal dollars, little of which is spent on quality patient care. This can be changed by the Community Choice Act which is based on the concept that the funding follows the patient, thereby empowering the individual. We are in an election year and have two Presidential candidates who have come down on opposite sides of this issue. Senator Barack Obama is for the Community Choice Act; Senator John McCain is against it.

If you want to know more about me, please do not hesitate to contact me.

Sincerely,

Keith Hogan
(512) 280-5402
businessksh@yahoo.com