A growing light...

...and it's not an oncoming train!

We found out about a program yesterday that might just be the answer we've been looking for to help manage our medical financial budget. It's the Medicaid Buy-In program and, fingers crossed, we can use it effectively to keep our budget in the black in 2009!

The Medicaid Buy-In program allows people of any age who have a disability and are working to receive Medicaid by paying a monthly premium. The monthly premium is based on earned and unearned income. One of the most important aspects for us is that each client is considered a "household of one" which means that a spouse is not penalized for assets owned by the other spouse. This also applies to income as well, so I can earn all the money I want and Keith will not lose his benefits! This is incredible news and we will be getting more details next week. This will call for a whole new level of paperwork, but it's worth it for financial sustainablity.

Let's get Keith on the The Ellen Show!

As you know, Keith Hogan is my husband and he is 43 years old. He was born with a genetic disease known as Spinal Muscular Atrophy Type 2 and has severe scoliosis and respiratory problems. He has lived with these conditions his entire life and has never been able to walk. Over time, he lost the ability to use his arms.

Keith was raised in a politically and socially conservative family who told him he could do or accomplish anything. So, he did. In 1989, he graduated from the University of Texas at Austin with a BA in Finance. He went on to a successful career in banking and real estate.

He spent 3-1/2 months in the hospital in 2008 where he was put on a ventilator. He is now at home working to get off the ventilator and get back to work. After his experiences with the healthcare system this year (both at the hospital and at home), he has become committed to sharing his story with the world. Between us, we have a huge network of great people. Being able to share Keith's story on The Ellen Show would bring his story to the world.

We believe that Keith would be a remarkable guest on The Ellen Show because:

• Keith is amazing, courageous and inspiring to everyone who meets him
• More people need to meet Keith and hear his story
• With the distress in the world today, people need to be reminded that we can all have the life we choose, no matter what the circumstances

Please join our Facebook group and let's get Keith on The Ellen Show!

Keith Hogan...Longhorn Living Star!

Keith's good friend Elena Watts arranged for this interview with 'Longhorn Living', which is a weekly section of the University of Texas student newspaper The Daily Texan. In it, Keith was given the opportunity to share his story of the ups and downs on the road to recovery. It was also the public debut of our extremely cute puppy, Henry Hopper Hogan who, like Keith, was born to be a star!

Choices?

Last week we met with the social worker/consultant and a lawyer to discuss the possible solutions for managing the costs of meeting Keith's healthcare needs going forward. Today we got the news in black and white. Even with all the positive elements in our favor, the long-term outlook is grim to say the least.

Here's the breakdown of "choices" available to us:

1. In order to shorten the time necessary to qualify to be evaluated for eligibility in the Community Based Alternatives program, Keith enters a hursing home/institution for a minimum of 4 months (more likely 6 months). Given the near-death experiences and deterioriation of health he experienced in the last rehabilitation center, this is not an acceptable option.
2. Apply for the Community Care for Aged and Disabled program. To do this, Keith is required to reduce countable assets to $6000. This is accomplished by either moving existing assets to a trust administered by a parent or transferring to another trusted individual. If the trust is created, it must have a "Medicaid payback" provision which means that once Keith passes away, all monies received from the government must be paid back from the trust. The purpose of the trust is that Keith would not have personal access to the funds.
3. The real kicker is that to qualify for any support at all, Keith and I can have a combined gross income no greater than $4044/month. If we exceed that number, then all support is stopped and have to wait 6 months to reapply for support.
4. Oh, and we could always get divorced. Apparently the institutions that actively encourage you to get married, use that against you when it comes to seeking support.

In truth, none of these choices are palatable. No matter which way you look at it, we only get the minimal support offered by public entities if we agree to impoverish ourselves and give up any control over our lives. Not only is Keith put in double jeopardy by compounding his physical disability with financial constraints, but I, as his wife, am equally bound by these limits. By these standards, we are both discouraged from being productive. Hard work and the commensurate financial rewards are punished by the system which is counter-productive at the very least.

Ultimately, I think our best bet is to shake ourselves free of the financial shackles that are offered by the governmental monies. By virtue of our creativity, age, networking skills, and ability to communicate our story, we are uniquely positioned to develop a financially successful alternative to the "choices". Naturally, we'll share the solution with the world!

Change for People with Disabilities: Time to Email Obama!

For the first time ever, the disabled Americans were noted in a president-elect's acceptance speech when President-Elect Barack Obama spoke the following words:

“It is the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Latino, Asian, Native American, gay, straight, DISABLED and not disabled — Americans who sent a message to the world that we have never been a collection of Red States and Blue States: we are, and always will be, the United States of America.”

–President-Elect Barack Obama
Acceptance speech, November 4, 2008; (emphasis added)

The following was written by Andrea Shettle. It is a call to action to hold President Obama to his word to create opportunities for persons with disabilities to live more independent lives.

On November 4, 2008, millions of people with disabilities across the United States and around the world joined our non-disabled peers in watching the United States election results. Obama supporters cheered or wept to learn that the next US president would be Obama. Then we cheered or wept again when Obama mentioned people with disabilities in his acceptance speech. History was made–not only for America, not only for Black people, not only for Kenya and all of Africa, not only for Indigenous peoples, but also for people with disabilities.

But we cannot afford to allow the moment to end here. Whether we supported Obama, McCain, or another candidate, we all know there is far too much work ahead before we can say, “Yes, we have made real change for people with disabilities.”

It is time for people with disabilities, our loved ones, our neighbors, and colleagues to join together, across ideological divides, to reach out to Obama. We should all send an email to Kareem Dale, Obama’s National Disability Vote Director (at kdale@barackobama.com), WITH COPIES TO Anne Hayes, a volunteer on the Obama Disability Policy Committee (at ahayesku@hotmail.com).

First, we should thank Obama — and also Kareem Dale — for mentioning people with disabilities in Obama’s acceptance speech on November 4. Ensure that they understand how much it matters simply for us to be included. How did you feel when Obama mentioned us? Share your story.

Second, we should tell Obama and Kareem Dale that we are aware of Obama’s disability platform. He promised to increase educational opportunities; end discrimination; increase employment opportunities; and support independent, community-based living for Americans with disabilities. And he promised to sign the Convention on the Rights of Persons with Disabilities (CRPD), the first international, legally-binding human rights treaty for people with disabilities. Tell Obama and Kareem Dale that we are ready to call Obama to account if he fails us. But more importantly, we are ready to work with him for change for people with disabilities.

It is important to send your disability-related emails to BOTH Kareem Dale AND Anne Hayes (between now and inauguration day. Kareem Dale’s email address may change between now and January 20, 2009.) Anne Hayes can help ensure that emails sent to Kareem Dale are not lost during this time of transition.

Both Kareem Dale and others who have worked on disability issues within the Obama campaign are ready to receive YOUR emails on disability-related issues for US President-elect Obama. Emails are welcome from across the United States and around the world. If you are a US citizen, then please say so in your email.

Learn more about Obama’s plan for people with disabilities .

Yes, the video is captioned. And if you scroll down to the bottom of the page, you can download Obama’s Full Plan for people with disabilities in PDF format (62 Kb).

Read Obama’s acceptance speech.

Want to read someone else’s letter to Obama before you write your own? Click here.

Brain Power

This was on 60 Minutes last night. Beyond cool.


Watch CBS Videos Online

24-hour Poll Dance

In my post on 9/8/08 I told you all why Keith ordered a mail-in ballot for this election. There is way too much at stake in this election and we didn't want to risk him losing the opportunity to vote as he did in the Texas primary in February. We figured that no matter his health condition, the mail-in ballot would have him covered and he wouldn't be disenfranchised.

The mail-in ballot arrived in the mail the 2nd week of October and early voting began on October 20th. Last week, we got our first taste of real Fall weather and Keith was feeling pretty healthy so he decided he'd rather vote in person. His attendants got him into the wheelchair, connected his ventilator so he could be mobile and we were off to the polls. We arrived about 2:30p and happily the line wasn't long so we zoomed straight to the front. I showed the poll worker Keith's ID which she quickly scanned in and then looked up at me with a big smile and said, "I'm sorry Mr. Hogan cannot vote today because he received a mail-in ballot." I agreed that he had indeed received the ballot and then pointed to Keith so that she could see he was actually there in person, in his wheelchair on the ventilator and ready to vote. At that point she told us that unless we 'surrendered' the mail-in ballot, Keith could not vote. If we had known this to be the case, we would have certainly brought the ballot with us to ensure that the considerable effort which had been put into getting Keith to the polls would have resulted in his being allowed to vote. However, there is no notice on the ballot or on the many pieces of instructional materials included in the package from the Texas Secretary of State. Thus, we did not have the ballot with us and Keith was effectively disenfranchised.


Later that night we completed the write-in ballot, signed it and sealed it in anticipation of me dropping it off at the polling place the next day. Patriotic duty dispatched, it was time to sleep. The next day I went to the polling place to turn in the envelope and was told that they could not accept any mail-in ballots. To his credit, the poll worker was very empathetic and promptly sought out a supervisor to see if there was any way they could accept the ballot. Unfortunately, there was no procedure in place for this situation so I had to fill out an affidavit describing the issues and then get over to the post office to be sure that Keith's ballot got to the Travis County Clerk's office in time to be counted. So, I got back in my car, went to the post office and dropped the ballot in the mailbox at 2:30, just about 24 hours after Keith started to vote.

We are fortunate that we can enact a Plan B, C or as many as we need to so that we can achieve our purpose. I have no doubt that there are a large number of folks who are either permanently or temporarily disabled. It takes extra effort to manage the daily interactions with the system and, apparently, the system saves a few more hurdles for really important occasions such as voting.

Left Behind: Texas’s Uninsured Children

One in five children living in Texas is without health insurance — the highest in the nation, according to a report released by Families USA.

The study, “Left Behind: Texas’s Uninsured Children,” found that 1.4 million children, or 20.5 percent of the population aged 18 and under were without health insurance in the three years from 2005 to 2007.

The number of uninsured children in the state grew by more than 33,000 between 2003 and 2007, according to the study.

Of the children without health insurance, 89.5 percent lived in a household where at least one parent worked, and 73.9 percent lived in a household where at least one family member worked at a year-round, full-time job.

Sixty-five percent of the children lived in low-income families — $35,200 for a family of three in 2008.

Washington D.C.-based Families USA is a national organization for health care consumers.

Wow, what a concept: Healthcare should Focus on Prevention & Preparedness

I received the Foundation Center's e-newsletter "Philanthropy News Digest" today. As I scanned the headlines, I was drawn to the headline Report Lays Out Blueprint for Modernizing U.S. Healthcare System. The summary information is noted below, click the links for the whole report.

(The first link, Trust for America's Health, has key health statistics by state. The Texas information was disheartening, but not surprising.)

In order to make up for a $20 billion annual shortfall in funding for public health programs, the U.S. needs to establish a stable, reliable funding stream and increase state, local, and federal spending by billions of dollars, a new report from the Trust for America's Health argues.

Funded by the Robert Wood Johnson Foundation, the report, Blueprint for a Healthier America: Modernizing the Federal Public Health System to Focus on Prevention and Preparedness (134 pages, PDF), found that despite the $2 trillion spent annually on health care in the United States, tens of millions of Americans suffer from preventable diseases, while major vulnerabilities exist in the nation's preparedness to respond to health emergencies. To help address these issues, the report recommends increasing federal spending by $12 billion and state and local spending by $8 billion annually over the next four to five years.

Other recommendations in the report include setting realistic short- and long-term health goals for the country; investing in disease prevention as a cornerstone of healthcare reform; implementing a National Health and Prevention Strategy focused on lowering disease rates and combating obesity; and clearly defining public health emergency preparedness and response roles and responsibilities.

"America's public health system is broken. Serious gaps exist in the nation's ability to safeguard health, putting our families, communities, states, and the country at risk," said TFAH executive director Jeff Levi. "This blueprint reflects ideas from the best and the brightest minds in public health for ways to prevent disease, prepare for disasters, and bring down healthcare costs."

“Trust for America's Health Releases Blueprint for Modernizing Public Health for the Presidential Transition and Next Congress.”

Robert Wood Johnson Foundation
Press Release 10/21/08.

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.

Sobering, indeed.

I was perusing the news on Yahoo tonight and a headline caught my eye "6 die in family murder-suicide in upscale LA home". I lived in Santa Monica for about 13 years and knew quite a few folks in upscale homes so I clicked on the link and read the article. As I read the article, I scanned for the name of the people involved. There was no name but as I read the work details naming Price Waterhouse and Sony Pictures, I turned to Keith and said there was a good chance that I had been acquainted with the gunman. (Like many places, LA is big at first glance, but once you get into certain circles, it's a pretty small town.) About 30 minutes passed and the story was updated. My eyes were drawn to the name, Karthik Rajaram. It was one of those surreal moments when the news moves from there to here at supersonic speed. All of a sudden I got a clear mental picture of Karthik in the PW offices (no C at that time) excited about his second son's birth and explaining to us the significance of his son's name. Ganesha, in honor of Lord Ganesh, the Remover of Obstacles and Lord of Beginnings. When he died on Saturday, Karthik's son Ganesha was only 12. To add more significance, in numerology 12 is the number of what is completed.

I cannot pretend to know why this tragedy occurred, or why Karthik felt he had no other options. I do know that Karthik was proud of his family and was committed to successfully providing for them. I also know that I saw moments of fear in his eyes that were covered up with intellectual bravado. Even on that day he was overjoyed at his son's birth, the fear was still there. He felt validated for having another son, yet knew that the proving had just begun. Apparently, it all became too much and it ended Saturday night in an upscale home just north of LA.

I think this story struck me for another reason as well. With what Keith and I have experienced this year, I have been made acutely aware of how thin the thread can be that binds us to this world. We create constructs such as friends, family and other emotional or physical commitments in the hope that they will keep us grounded and engaged in our own life. Keith has said that one of the reasons he didn't succomb to those near-death moments is because he knew he had to live now that he had a wife. That was an emotional commitment that overrode any other fears he may have had. Keith chose to live despite institutional care that put him at serious risk and, seemingly, would have been just fine if he had slipped away. The institution is not moved by individual desires and once you know that, you know what you must do to survive.

"Critical Condition"

What happens if you fall sick and are one of 47 million people in America without health insurance? “Critical Condition” by Roger Weisberg (“Waging a Living,” P.O.V. 2006) puts a human face on the nation’s growing health care crisis by capturing the harrowing struggles of four critically ill Americans who discover that being uninsured can cost them their jobs, health, home, savings, even their lives. Filmed in vérité style, “Critical Condition” offers a moving and invaluable exposé at a time when the nation is debating how to extend health insurance to all Americans.

Roger Weisberg's Critical Condition is a powerful, eye-opening look at the health care crisis in America. In an election season when health care reform has become one of the nation's most hotly debated issues, Critical Condition lays out the human consequences of an increasingly expensive and inaccessible system. Using the same cinema verite style he employed with Waging a Living (P.O.V., 2006), Weisberg allows ordinary hard-working Americans to tell their harrowing stories of battling critical illnesses without health insurance.

The four people profiled in Critical Condition live in places as diverse as Los Angeles; Austin, Texas; and Bethlehem, Penn., but they face distressingly similar obstacles to surviving without health insurance. It is through their eyes and words that we are taken through the gaping holes in the health care system, where care is often delayed or denied. Ultimately, the unforgettable subjects of Critical Condition discover that being uninsured can cost them their jobs, health, homes, savings, and even their lives.

Critical Condition dramatizes how health care is rationed based on ability to pay. "It's your money or your life," says one of the film's subjects, who courageously lays bare the uncounted cost in pain and suffering that is borne by millions of uninsured Americans

As the film illustrates, the country spends over $2 trillion a year — over $6,000 per person — on health care, yet is the only major industrial nation without universal coverage. Forty-seven million Americans live without health insurance, and 80 percent of them are from working families who either cannot afford insurance premiums or lose their insurance exactly when they need it most: when they fall ill and can no longer work.

Despite spending 50 percent more on health care than any other country in the world, America ranks 15th in preventable death, 24th in life expectancy, and 28th in infant mortality. The struggles of the four families profiled in Critical Condition put a human face on just what these statistics really mean for ordinary Americans.

2008 Presidential Candidate Positions on Disability-related Issues

This side-by-side comparison of the candidates' positions on disability-related issues is based on information found on the candidates' Web sites, the candidates' Senatorial Web sites and supplemented by other sources. OLRS neither supports nor opposes any political party or candidate for office. Information provided on this page is strictly for educational purposes only. Please click HERE to see the comparison chart.

The McCain/Palin camp has reiterated their support for children with special needs since Governor Palin's awareness has been raised with the birth of her son Trig. However, as always, the programs only focus on children and do not extend past the age of 21. They are then left with minimal support until the age of 65 when government programs become available once again.

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.

Critical Mass

These are the opening paragraphs in an article entitled "Fla. Medicaid Recipients Want Out of Nursing Homes."

Charles Todd Lee spent a lifetime going backstage at concerts, following politicians on the campaign trail and capturing iconic shots of everyone from Martin Luther King Jr. to Mick Jagger to Mickey Mantle. Today, he enjoys such freedom only in his dreams.

The 67-year-old photographer has been confined to a nursing home for five years, the victim of a stroke that paralyzed his left side. And he's angry.

"Most of the people come here to die, so you want to die," he said. "It is a prison. I can't escape it.


The article ends with a quote from John Boyd, 50, (who) has been in a nursing home for the last nine years. He hates them. He became a quadriplegic 36 years ago when he fell off a wall and broke his neck.

"I can't choose what meal I want, I can't have a visitor after 8 o'clock — it's just like a prison without bars," he said. "People are making decisions for and about me that don't even know me or even care about me. All they care about is the money they're getting for me."

Since our journey through the American healthcare system began last February, articles like these tend to catch my attention. The stories from patients like Mr. Lee or Mr. Boyd illustrate the limited options available to people who, like Keith, still have a lot of life left to live but, because of their disability are relegated to institutions just because that's the only option Medicaid dollars will pay for at this time.

This is a shameful state of affairs. As a country we are warehousing people who are willing and able to contribute but are prevented from doing so because of the powerful institutional/nursing home lobby that has heavily invested in maintaining the status quo and the short-sighted politicians who enjoy the benefits of that status quo.

What will it take to bring Mr. Lee, Mr. Boyd and others back into their community? Well, in the state of Florida, they've filed a federal lawsuit seeking class-action status on behalf of 8,500 institutionalized Floridians based on the premise that the state is illegally forcing them to live in nursing homes when they should be able to live where they choose. Should they be successful, not only will these patients be free to create independent lives, but they will also be setting a precedent for other states to follow. You can be sure we'll be keeping a close eye on this case.

While there is no guarantee that Texas will follow anybody's lead, it gives us a bit more hope that we're not alone on this journey and that the critical mass needed for institutional change is growing. Stay tuned.

Where the Presidential Candidates Stand on Advocacy for People with Disabilities

I came across Patricia Bauer's blog which featured an article by a person with disabilities who researched the primary parties presidential candidates' position in healthcare with special attention to disabilities. The author, Paul K. Longmore is a professor of history and director, Institute on Disability, at San Francisco State University.

If you are physically disabled, have serious medical issues, or love someone with a physical disability or serious medical issues, I would encourage you to read this article prior to casting your ballot for President on November 4, 2008.

Dr. Glen House, Founder, Disaboom

I found this article on Dr. Glen House today. He is the founder of a new social website called Disaboom which is focused on people with disabilities whom they encourage to "live forward". There is also a section on the website for caregivers. The purpose is to create community around living a whole life despite perceived and real limits. Keith and I had discovered the community recently and then found that we have some unexpected connections to the founder. It has been beneficial for both Keith and me to connect with other folks who are 'living forward' and sharing their stories. Because Dr. House is speaking from his own experience, there is an authenticity that is lacking in other sites. (I had also checked out Steve Case's Revolution Health, and was shocked to find that it had no area for people with disabilities.)

You get a sense of Dr. House's joie de vivre in the article, please click here to read the whole thing.

++++++++++++++++++++++++++++

By Chris Taylor

September 15, 2008: 9:00 AM EDT

(Fortune Small Business)

Despite his wheelchair, and often because of it, Dr. Glen House has always enjoyed doing what he isn't supposed to. Take the time he persuaded his neighbor in Colorado Springs, J.W. Roth, to join him on vacation in the ice fields of Taku, Alaska. The trip entailed flying to a remote lodge in a tiny ski plane that was ill-equipped for disabled passengers: Boarding was via a rope ladder. "They said no wheelchairs," Roth recalls. "So we signed up."

That 2006 trip was a turning point for House and Roth. The boarding process was dicey: Roth gave House a fireman's lift up the plane's ladder, which dangled over the ice. "If I go down, you're going with me," House snarled on the way up. But later the pair sat in the Taku lodge, wondering how they might bring such exhilarating experiences to other disabled people. "They're sick of doctors," House told Roth. "They want to know how to live forward with their conditions."

That chat led to this year's launch of Disaboom.com, a fast-growing social network aimed at the 50 million Americans with disabilities and their caregivers. In a time of social-network fatigue, as Facebook and MySpace have spawned hundreds of bland imitators, Denver-based Disaboom is unique. It focuses on a large, untapped audience eager to get answers and make connections, and one that advertisers had previously been unable to reach.

Like the entrepreneurs in the stories that follow, House demonstrates that disabilities are no obstacle in the brave new world of technology. If anything, the determination they engender provides a clear business advantage. According to the U.S. Census Bureau, the percentage of self-employed Americans with disabilities has grown from 12% to 15% since the dawn of the Web. For the rest of us, the figure has stayed static at 8%. Your next competitor may just zoom past you in a wheelchair.

The Dead Zone

The 2008 election campaigns have included rhetoric about tax breaks for middle income families, and media coverage has included stories about families who have children with disabilities. Left out of all the election rhetoric are the candidates' positions on and commitments to those babies with disabilities who grow into adults with disabilities who all-too-often survive on extremely low incomes (less than 30% of the median income). These extremely low incomes are often the fixed benefit amounts of SSI and Social Security.

So, how does Texas stack up? Not very well at all. Texas is currently ranked 48th out of 50 states and scores extremely low in both eligibility and scope of services (followed only by Mississippi and Idaho). Here are some highlights. The entire report can be viewed here.

• Total Score: 335.5 out of 1000
  Rank: 48 out of 50
• Placing in the bottom 10 in two categories, including the one with the heaviest weight, Texas ranks a poor 48th overall. In fact, it is the only state that places consistently at the bottom, all its category-specific ranks ranging within 10 ranks. Unlike other states that have made a policy decision to cover more persons for fewer services, or vice-versa, Texas ranks extremely low in both eligibility and scope of services.
  
• With respect to eligibility, Texas tends to adhere closely to the minimum Federal Poverty Levels, for which it earns no points since the mandatory minimums leave many who cannot afford private health insurance without healthcare. This poor showing in eligibility in Texas means that large numbers of people are excluded from Medicaid just because of where they happen to live, and they would be covered in a state with more lenient eligibility criteria.

The most dangerous of the gaping holes in the Texas support network is shared by many states and is referenced in the first paragraph of today's post. It is about the dangerous and destructive dead zone for people with disabilities: age 21-65, the most productive years of all of our lives! During the time that they can be contributing to the world, they are marginalized, povertized and institutionalized. They are taken out of the economic mainstream and effectively left to beg for support. This is patently un-American. As a country we should be developing productive citizens at every opportunity.

In this election year, politicians constantly chatter about lower taxes, smaller government and putting everyone to work. Here in reality, I hear people complain all the time about the people who 'live off the government' and, to be fair, there are people who fit that profile. However, the majority of U.S. citizens want to be productive and contribute. They'd be happy to pay taxes if it affords them a quality of life that makes them feel like a whole American citizen. Many years ago, Martin Luther King called for people to be measured by "...the content of their character, not the color of their skin," it's now time for those civil rights to be extended to people with disabilities who want the chance to be full economic citizens, rather than be relegated to a place at the bottom of an economic ladder that they cannot currently climb. There are ways to help them up the ladder, one of which is the Community Choice Act. With the socioeconomic map of the United States shifting under the pressure of institutional failures, it is imperative that we create opportunity for all citizens. We cannot risk leaving anyone in the Dead Zone.

Healing

We actually got to see the hematologist last week. He's a very nice guy who usually sees cancer patients so when he opened the door to the exam room, took a look around and said "everyone looks pretty healthy in here, why are you here?" Keith told him about the anemia and the low red blood cell count. He looked closely at Keith and said "You don't look anemic to me, let's take a test and prove it." Stacy, heretofore known as the 'Blood Whisperer', entered the room and quickly drew the blood needed. (This in itself was a bit of a miracle, since Keith has a reputation as a 'hard stick'.) A few minutes later, the doctor came back in the room and declared that Keith was absolutely not anemic.

Not only is this a tangible measurement of how much better Keith is healing at home rather than in some institution, but also how the system can work once you identify the problem. In this case, the same day that I told the person in Keith's primary doctor's office my theory that we were just being paper shuffled around until the doctors could merge and deny service, we got the appointment. Coincidence? Probably. But it felt like I had somehow broken a spell by naming the wrong. (Okay, maybe I spent a bit too much time in Middle Earth as a kid, lol). Without a doubt, if we had not persisted, demanded and questioned we would not have had the appointment. How many people cannot do that for themselves? Too many.

As we've been on this healing journey, we have gotten a lot of agreement from folks about the broken system. This message is not just from patients, but from doctors, nurses, respiratory therapists, institutional health providers, home healthcare workers and just about everybody who has crossed our path. While in some ways it's comforting to know that we are not alone in our experience, it's also overwhelming to realize that the brokenness of the system is so accepted by all. The weight these healthworkers carry trying to hold it together is now breaking them. Perhaps patients are being sent home with ever more complicated medical routines to give them a better chance at healing. Certainly Keith has experienced exponential improvement at home.

So, should the broken system just be accepted as 'the way it is'? No. Can one person make a difference? Absolutely. It could be one person listening to a healthcare worker discuss her passion for patient care so that she is reinvigorated for one more day. Or the person who finds and connects with the individuals in the institutions. Or building community around solutions. Most importantly as long as one person continues to hold the vision of a strong, vital healthcare system, then we all have the chance of experiencing that truth. I have often been branded an idealist and, as my friends will attest, one of those individuals who actually holds those kinds of visions. So, when you're feeling overwhelmed with the broken system, uncaring healthcare workers and other uninspired participants in the healthcare world, just know that I'm your designated idealist holding a vision of a system that works.

The Post-Katrina, Post-Gustav, Pre-Ike Post

In an effort to show that the problems we are having with the healthcare system are frighteningly widespread, I'll be posting some of the stories I receive from near and far. Here's the first one:

Mary Matthiesen, director of Conversations for Life, “Teaching Healthcare & The Public How to Talk About What Matters Most”, forwarded my friend Maggie Duval an on-the-fly message from “barefoot doctor” Michael A. Kaiser in New Orleans (from Sept 4th). Borrowing a shared computer running an aircard (no Internet access, and due to lack of power/resources), this is a front line report about aftermath of Gustav on LSU health care facilities in Baton Rouge, Houma an NO. Please forward at will…
—-
Good morning…

Just a brief, or maybe not so brief, update.

Larry in New Orleans. Quarter apt with power and he’s staying there. 8002 Cohn, not easy to identify damage (broken windows, water leaking, trees through roof), but no power.

Here… Mike and Victor without power. The admin of HCSD [Health Care Services Division - LSU Baton Rouge] remains working out of our day surgical hospital, which is operating on generator power. That means, there are some lights, and anything that needs electricity must be plugged into a red plug, designed for critical life support systems. Therefore, there are many red plugs in some places and very few in others. That means you need a flashlight to use the bathroom at all times or to enter a patient room (where we sleep) after dark. We’ve become very good at using the few red plugs for multiple purposes from charging blackberries to running the microwave to setting up our twice/day videoconference with all our hospitals.

Like Katrina, I’m struggling for an analogy in American History.

Before the storm we fully evacuated three hospitals and mostly two others. Then after the storm (with no gas and with communication failing) we moved just about everyone back and evacuated fully a fourth hospital.

Where has this been done before?

Of our 7 hospitals…two remain closed. EKL [Earl K. Long], here in Baton Rouge is still without power. When power finally got back to the hospital, key switches were so hot and damp that the power arced and blew shit up. Estimates for repairs range from “by tonight” to 6-8 weeks. Nothing, NOTHING, happens faster than the estimates or anywhere near the early estimates.

I’m thinking a month.

Chabert in Houma essentially took a direct hit. We are still figuring out all the damage, but replacement of all the elevators alone are estimated to take 8-12 weeks. (See comments above about time estimates).

It’s impossible to accept that we will be starting a new round of FEMA negotiations and interim solutions for healthcare. We are still negotiating with FEMA and revising interim solutions in NO three years after Katrina.

In Houma, we are already working towards a military supplied facility (DMAT-have no idea what the letters stand for) to be located in an empty grocery store.

Some of the Gustav vs Katrina differences are huge, (for example one hospital vs all impacted this time) but some are so similar. No matter how much thinking and money we’ve put into improving communication (and lots of money has been spent with clear measurable benefits), communication remains a barrier. We are running the hospital system mostly off laptops with aircards as we have no real internet access. Most cell phones are useless (I have a voice mail from at least 48 hrs ago that I cannot connect and listen to). And again, in the United States of America, lack of fuel is significantly hampering our efforts. An example, a huge truck delivering medicines ran out of gas and sat on the side of the road, while we figured out how to get him fuel. I would go tomorrow to Houma and see for myself the condition of the hospital, but I’m not sure where and how long it would take to get gas.

Another, example, I spoke to Mike Sanders last night:

Mike S: I stopped for gas on the way home tonight. (He hadn’t been “home” for a week)
Me: How long did it take?
Him: Oh, it wasn’t bad at all. I only had to wait an hour.

Hmmmm. I haven’t seen or heard three minutes of the Republican convention (did hear three very funny minutes of Dave Letterman making fun of our new VP candidate), but I know the response was better, but Federal help was and is mostly missing. If we had to rely on the Federal government instead of our own planning, patients would have died in both Houma and Baton Rouge in our hospitals. And when the real story of the medical evacuation of NO comes out (I know only pieces), there are definitely deaths that resulted from Federal government incompetence and inability to deliver what they planned and promised. Geaux Obama!

(The above paragraph morphed out of control. I started to write about the lack of media attention, once “the story” of the levees breaking in NO again didn’t pan out.)

OK… other folks are waking up so I need to pass on this computer with its air card to others. I’ll go take a shower (still cold) and start another day. For those of you who believe in the concept of “barefoot doctors”, I do everything in bare feet, which I truly believe keeps me grounded.

Thanks for all the e-mails to me, and all the calls and e-mail to family and friends to check-in how I did and am doing.

Feel free to forward this on. I’m hoping that this e-mail alone leads to more Obama votes in November,

love,mike

Voting Rights (and Wrongs)

Keith entered the hospital on February 18, 2008 the first day of early voting in the Texas Democratic primary. Since we believed that he'd only be in a few days, we didn't worry about him being able to vote, after all there'd be another couple of weeks to make sure that he got to cast his vote. Except that there wasn't. As you know, the three days turned into three months so he didn't get to vote at all. After Keith got his trache implanted on February 25th, we still didn't know how long he'd be in the hospital so we asked the hospital staff if there was a procedure for patients who were unexpectedly sidelined from the voting process. They said nobody had asked about it and that it wasn't part of their operational training. So, I went to the Travis County Registrar's website and learned that February 25th, the day Keith was having his trache implanted, was the last day for 'emergency' absentee registration. So, no vote for Keith in the primary.

As the national election approaches and it becomes clear that Keith may not be able to physically go to the polls himself, we went to the web once again in search of a way to ensure he gets to vote. I entered the search term "absentee ballot travis county texas" and was directed to http://www.co.travis.tx.us/county_clerk/election/pdfs/fpca.pdf. On the form, there are only 3 acceptable reasons for an absentee vote:

1. A member of the uniformed services or merchant marine on active duty, or an eligible spouse or dependent;
2. A U.S. citizen residing outside the U.S. temporarily; or
3. A U.S. citizen residing outside the U.S. indefinitely.

Keith is none of these unless you want to get philosophical and claim that he's 'outside the U.S. mainstream temporarily. (I picture the elections folks in the government stating "we are not amused" in unision, lol).

I then went to the Travis County website and after sorting through several pages discovered that he doesn't need an absentee ballot at all. He needs an "Application for Ballot by Mail" which must be submitted by mail (duh!) not earlier than the 60th day before the election and not later than the 7th day before the election. You have four categories on this one:

1. 65 years of age or older
2. Disability
3. Confinement in jail (!)
4. Expected absence from the county

So, happily, Keith will get to vote. However I wonder about all the folks unexpectedly residing outside their normal life who will not get to vote. Are hospitals aware of the procedure? Do they have copies of the application for patients to use? I don't know how many people even care about this issue, but to have even one vote cancelled simply because of access to the correct paperwork is reason enough to formalize a process guaranteeing the right to vote.

Medicare(less) Lessons 1 & 2

As is often the case, the government infrastucture is designed for acute issues and falls apart once the diagnosis changes to 'chronic'. We all see this in the news every day. Some of the stories hit home, others are at home.

We will be eternally grateful that Keith was accepted into the Medicare program on January 1, 2008. Knowing that the costs were covered took some of the stress out of the 3-1/2 month hospital stay. We are also grateful that we had some time in the hospital prior to returning home to train with the respiratory therapists so we could handle the new duties when Keith moved home with the ventilator and trache. We were fortunate that Walgreen's Home Healthcare is the provider contracted to take care of the post-hospital needs. So, without a doubt, the government-managed Medicare fulfilled its purpose in regard to the acute healthcare issues Keith has experienced this year. However, in this phase of healing, when Keith's health needs have been recategorized as chronic, Medicare has transformed into Medicare(less).

One of the most important parts of this healing process is getting Keith back into his pre-hospital life. In that life he engaged with the world daily, he did not hang out in bed for days at a time. Because Medicare will only cover a manual lift, he can only get out of bed when one of his male attendants is here. This is because the process of using the manual lift requires quite a bit of upper body strength, which is not something that most female attendants have. We have requested an electronic lift, which is easily managed by one person and is safer for both Keith and his attendants. Unfortunately, Medicare considers this an unnecessary expense and does not pay for the lift. This forces Keith to be confined to bed and allows him experience the world second hand through me, his caregivers, visitors, the internet and the television. So we have leveraged all of those elements to spread the word about Keith's progress and get the world engaged with him. Although his physical movement is still limited by the lack of an electronic lift, he has been able to reposition himself as an activist and is back to engaging with people near and far.

Lesson One: Insurance does the bare minimum to keep you alive, but does not allow you to truly live. If you want a full life, you have to fill it!

We were recently informed that Medicare had determined that the inner cannula on Keith's trache only needed to be changed every three days, rather than every day as we had been instructed to do at the hospital. (The inner cannula fits in the trache and is the is the first line of defense against infection.) We didn't find this out from Medicare, we found this out when our Walgreen's representative dropped off supplies last week and we only had one box of replacement cannulas instead of three. Naturally, it was disconcerting to discover that Medicare was reducing support for something that we had been told was vital to Keith's good health. After conferring with Keith's doctor, we decided on a workable compromise and the inner cannulas will be changed every other day. Medicare will cover one box and Walgreen's will sell us the 2nd box at their cost. It's an additional expense for us, but well worth it.

Lesson Two: Medicare does not service individuals, they serve groups. You have to do the work to make the plan work for you.

Okay, those are the lessons for tonight. No doubt there will be more, after all, tomorrow is Monday and government is back in session!

Community

I have always recognized the power of community. Whether as a comfort when you are feeling alone or as an energized group working towards a common goal, it is a vitally important element of the human experience. This year Keith and I have been overwhelmed with support and kindness from the folks in our life who are our community. As the year has progressed and our lives have changed, we have been compelled to expand our community and tell our story to the world. Through this blog I've reconnected with old friends and been introduced to many other folks. We are all bound by the desire to improve the community by sharing our challenges and using the experiences to create an even stronger community ready to take on all that life offers.

I found this video yesterday and it struck me as a strong reminder that community begins with one person working to make a difference. I hope you enjoy it and pass it on:

Don't be Fooled by Sister Sarah's Bridge to Nowhere

In her speech last night Sarah Palin made a special effort to connect with folks whose lives have been touched by disabilities. With a wink and big smile, she said you will "have a friend in the White House". However, on the off-chance that she will become the Vice President of the United States, she still won't be occupying the White House. That will fall to John McCain who has declared that he will not support the Community Choice Act. He even states that publicly in this video. John McCain is NOT a friend to people with disabilties. And, as the record apparently shows, neither is Sarah Palin. (I have been reading an Alaskan political blog called Mudflats: Tiptoeing Through The Muck of Alaskan Politics. Last night the author made a comment about Governor Palin cut funding for special needs programs in Alaska. Once he writes the full post, I will share it here.) I have no doubt she loves Trig and all of her children, but I do have doubts that she has a true idea of the extra time and attention it will take to create a full life for him.

As the primary caregiver for my husband Keith, I am appalled at the glorification of caretaking by a woman who has a whole network of people who are taking care of those 5 kids. It is a daily struggle to manage our home, the attendants, Keith's business life, my business life and, oh yeah, my identity beyond all that, a woman named Ruth who has had the same chipped nailpolish on her nails for the last few weeks. (It's not a fashion statement, it's a testament to the fact I've got other more pressing uses for my time.) Wow, I just counted up my responsibilities...looks like I've got 5 kids too. However, I don't have a whole state at my disposal and I certainly don't have national support for my work.

Without the Community Choice Act, none of us will.

Remember the Alamo!

Well, I figured that was a good title to open a post about another Texan who is fighting the good fight against the healthcare system, lol.

John T. James, Ph.D. created the site Patient Safety America as a result of his son Alex's death 5 years at the age of 19 ago due to uninformed, careless, and unethical care by cardiologists at a hospital in central Texas in the late summer of 2002. You can read the full story here. He has written a book called "A Sea of Broken Hearts" sharing his experience as a lesson to others. It is a journey of heartbreaking mystery and discovery as a father pieces together the events that led to the death of his 19-year old son, despite extensive evaluation by a "team" of cardiologists. That personal struggle opens into a broad-ranging examination of our profit-driven health care system. The story concludes with an appeal for ten patient's rights to protect us all before we personally encounter the dangers of our health care system.

The most painful and shocking sentence in his story is that the Texas Medical Board, under the direction of Dr. Donald Patrick determined that my son's care exceeded the standard of care in Texas. I think this says a lot about the standard of care in Texas.

I hope you get a chance to check out his site, read his story and join his cause.

Time for the Big Guns: Keith's Letter to Oprah

With Oprah's new season starting, I thought we should do our part to kick it off well. So, naturally, we thought she should hear Keith's story. Please feel free to use this letter as a basis and let her know that you think it's a great story too!

You can send your message to Oprah HERE.

++++++++++++++++++++++++++++++++++++++++++++++

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. I also have severe scoliosis and respiratory problems. I have lived with these conditions my entire life & I've never been able to walk. Over time, I have lost the ability to use my arms. You can see more about me here: http://www.youtube.com/watch?v=1S9D8y89GM8.

On 2/18/08 I was hospitalized due to pneumonia & chronic respiratory failure. Within a week of being admitted, I had an emergency intubation, received a tracheotomy & was put on a ventilator. I had several episodes that brought me close to death. I was finally released from the hospital to move back home on 5/27/08. I have continued to recuperate but the medical expenses not covered by Medicare & 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 & 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.

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.

I have come to understand how absolutely flawed the entire healthcare industry in the United States has become. I believe that ineptitude, greed & systemic corruption brought us to this state. America can & must do better. The unarticulated public policy of impoverishing people with disabilities, who might otherwise be a productive part of society, must be abolished. This is not just a healthcare issue. For people with disabilities, it is a matter of human rights.

PSA: Community Choice Act

As all good public information channels must, we're having a short break in the regular programming for a Public Service Announcement. (You can thank years of watching PBS pledge drives for that, lol).

Since our sojourn into the healthcare maze, we have found one piece of legislation that has given us a bit of hope that lights the way. You may have heard Keith and I refer to the Community Choice Act on a number of occasions. I thought it would be helpful to share the information here as well as give you a quick link you can use to tell your elected officials of the vital importance of this legislation if we want to be able to live indepenent lives to the best of our abilities. Keith may be the first person you know who personalizes this need, but I am quite sure he won't be the last.

Community Choice Act

For decades, people with disabilities, both old and young, have wanted alternatives to nursing homes and other institutions when they need long term services. Our long term care system has a heavy institutional bias. Every state that receives Medicaid MUST provide nursing home services, but community based services are optional. Sixty seven (67%) percent of Medicaid long term care dollars pay for institutional services, while the remaining thirty three (33%) must cover all the community based waivers, optional programs, etc.

Families are in crisis. When support services are needed there are no real choices in the community. Whether a child is born with a disability, an adult has a traumatic injury or a person becomes disabled through the aging process, they overwhelmingly wan t their attendant services provided in their own homes, not nursing homes or other large institutions. People with disabilities and their families will no longer tolerate being forced into selecting institutions. It's time for Real Choice.

The Community Choice Act provides an alternative and will fundamentally change our long term care system and the institutional bias that now exists. Building on the Money Follows the Person concept, the two million Americans currently residing in nursing homes and other institutions would have a choice. In addition, people would not be forced into institutions in order to get out on community services; once they are deemed eligible for the institutional services, people with disabilities and their families will be able to choose where and how they receive services. Instead of making a new entitlement, the Community Choice Act, makes the existing entitlement more flexible.

The Community Choice Act establishes a national program of community-based attendant services and supports for people with disabilities, regardless of age or disability. This bill would allow the dollars to follow the person, and allow eligible individuals, or their representatives, to choose where they would receive services and supports. Any individual who is entitled to nursing home or other institutional services will now be able to choose where and how these services are provided.

TAKE ACTION!

Please click HERE to both speak for yourself and for others who have no voice.

Beware Cheerful Women Who Answer the Phone

Just got off the phone with Keith's doctor's office. We've been trying to follow doctor's orders and get an appointment with a hematologist because Keith developed anemia while in the hospital as a result of the drop in red blood cell production that can occur in cases of chronic illness. It all sounds pretty serious to us, so we're committed to jumping through the hoops necessary to make it happen. Trouble is, the hoops are moving, and on fire.

The hematologist that Keith saw in the hospital is not in his Humana/Medicare provider network. When we called for an appointment, the cheerful woman on the phone told us that the first $10,000 in expenses was our responsibility. Naturally, our next call was to Humana/Medicare to find a provider in the network.

Humana/Medicare gave us the names of several doctors in network, we chose the ones closest to Keith's primary physician and called for an appointment. The cheerful woman who answered the phone asked that we have Keith's records sent over before any appointment could be set, once she had those records she would call us to schedule the appointment. We immediately called Keith's primary physician with the request and were told it would be taken care of the next day.

About a week later, we realized that there had been no phone call so we followed up with Keith's doctor who assured us that the files had been transferred. We then called the hematologist's office who told us the person in charge of that was out, they'd check and call back.

Another week passes.

Another call to Keith's primary physician's office, more reassurances, ball back in the hematologist's court.

Another week passes.

I spoke with Keith's primary physician today and he said he'd check on it. A few minutes later his office manager called and said the doctors we had selected did not accept Humana/Medicare insurance. I called her back, told her that we got those recommendations directly from Humana/Medicare. She hesitated for a moment and, as if she was telling me a state secret, said that those two doctors were joining the practice of the original hematologist who saw Keith in the hospital. (Thus forcing us back in the position of having to pay the first $10,000 in expenses if we chose to make an appointment with them.)

I was appalled. If we had been told a month ago that these doctors were not going to be accessible to do the job, we could have made an appointment with another of the in-network doctors. In my estimation, they had knowingly continued to delay the appointment citing paperwork and blaming anyone who wasn't on the phone so that this merger could occur and they wouldn't have to deal with Medicare patients like Keith.

Fortunately, Keith is of hardy stock and is hardly wasting away from anemia. However, if this need was so urgent in the hospital that he was given direct hemoglobin and iron transfusions to strengthen his red blood cell count, why the hell was this appointment given no urgency here in the 'real world'? How are we expected to trust our doctors when the most urgent question is "how are you going to pay for this?" when "this" can't even be proven to be a problem that we as patients should give any urgency to at all? We are fortunate in that Keith & I are very resourceful, able to ask questions, and find alternatives. However, as Keith, who is a great poker player says, it's hard to win the game with the deck stacked (and re-stacked) against you.

It has been just about a month and we still haven't gotten an appointment set. So, the ring cycle begins again, and we will begin calling the next bunch of doctors and trying to get them to care. One thing I am sure of is that a cheerful woman will answer the phone

Labor Day (and Night)

According to Wikipedia, Labor Day is a United States federal holiday observed on the first Monday in September. The holiday originated in 1882 as the Central Labor Union (of New York City) sought to create "a day off for the working citizens".

The whole holiday has confused me ever since I was a kid. I grew up in Texas where there are no labor unions so we didn't have the parades or other indicators of the meaning of the holiday that might be more apparent to me. My confusion also might be tied to the fact I grew up in a family of entrepreneurs and otherwise creative thinkers and observed that work was a 7 day/week opportunity.

While that childhood didn't prepare me for holidays, it certainly prepared me only too well for work. Not just the timeclock driven work that is at the root of this holiday, but the 24/7 labors of love such as the work that Keith and I have taken on as we have committed to bringing him back to optimal health.

When we first arrived back home from the hospital, the work of managing his trache, the ventilator and medications seemed quite daunting. It became quickly apparant that we could handle all that and soon it developed its own rhythm. The bigger work that has emerged is understanding and taming the many-headed hydra known as the U.S. healthcare system. Believe me, this was not our original plan for the first year of married life. However, some are borne to seemlingly daunting tasks, others (like us) have them thrust upon them.

As we've researched the good, bad and ugly of the beast, we have been heartened to discover some amazing folks along the way. The first is Dr. Julia A. Hallisy who has written a book called The Empowered Patient which is a compendium of action steps and strategies for patients. She directed us to Lisa Lindell in Houston Texas who has written the book 108 Days about her experience keeping her husband alive after a month-long hospital stay turned into a 108 day odyssey through the healthcare maze. Dr. Hallisy also strongly recommended that we read the book Who Killed Health Care? written by Dr. Regina Herzlinger since it offers a real-world, consumer-driven solution to the ailing U.S. healthcare system.

Within those three books, we have the complete value chain of knowledge necessary to do our work. Dr. Hallisy tells you how to be a better patient; Lisa Lindell demonstrates how to be an advocate; and Dr. Herzlinger provides a straightforward plan for utilizing those patients and advocates to reinvent the system.

Now, I just need to find the time to read the books, LOL.

Give and Take

Keith has dealt with the issue of hiring personal care attendants his whole life. It's an odd thing to select the stranger who is going to take care of your most personal of business. From my two years of observation, there are, for the most part, two categories of people who enter the personal care attendant field: caretakers and caregivers.

Caretakers look at this work as a job, just something to keep gas in their tank and a bit of money in their pocket. They start out as fairly pleasant people who do everything on "the list" and then head out the door at the end of the shift. After a month or two, when they feel comfortable with the routine and have built up some trust, the bad habits begin appearing. Showing up a bit later each day, doing the minimal work, making themselves 'at home' on the job. There are countless times that I would open the door to the bedroom and find attendants sleeping or watching TV. Or they would leave the house to run a quick errand for Keith and disappear for a few hours. Or, as with one attendant last year, steal checks and attempt identity theft. (Happily that guy is currently awaiting trial, though it's been a Herculean effort to get the authorities to care about the crime). These 'takers' are sliding through life, preying on people whom they believe are weak and taking advantage of a system that does not care.

On the other hand, Caregivers, are a completely different type of person. These folks have genuinely chosen this work as a career, perhaps even a vocation. You can tell the difference almost immediately. Even during the interview process they are keeping an eye on Keith and looking for ways they can be of service. Contrary to the 'takers', these people are always attentive to detail and have a giving manner. I never have to question their commitment to Keith or wonder if he was safe in their care. When Keith went into the hospital on February 18th, his primary attendants Jen and Bruce, continued their care for him in the hospital. Jen's background as a Certified Nursing Assistant was invaluable as the stay in the hospital extended from a few days to a few months. This is when the difference between give and take became so apparent to me.

Once Keith came home, we had to find more attendants since Keith required 24/7 care with the addition of the ventilator to our life. As we soon discovered, the medical equipment sorted out people fairly quickly so we were able to assemble a good team of people from the ever-reliable Craig's List. Unfortunately, this also doubled our monthly out-of-pocket personal care attendant expenses. We consulted the Humana/Medicare insurance manual and saw that his policy allowed for a moderate co-pay for PCA expenses with 'in network' agencies and 80% reimbursement of PCA expenses with 'out of network' agencies.

We contacted Keith's insurance provider to get a list of home healthcare agencies so we could start the process of finding agency attendants and hopefully reduce our expenses. What a fool's errand. Half of the agencies we called do not honor Medicare. Those who did accept Medicare could either provide a PCA who did standard caregiver duties, but would not provide any medical help as required by the ventilator. They directed us to agencies who provided medical care, but those folks would not perform any personal care duties. What we needed was a hybrid: a personal care attendant who is (or could be) trained to do the medical duties related to the ventilator and trache. Apparently this does not exist on the institutional/agency level.

So, until we can open our own heavy home healthcare agency, we'll stick with Craig's List and our retinue of caregivers. I advise all of you to begin thinking about your own network of givers now, before you are forced into a system that is not prepared to handle the brave new world of care that is required by an aging population.

Just press SEND

As Keith and I attempted to wend our way through the byzantine healthcare system, it rapidly became apparent to us that we were going to need an expert to help us sort through the information and determine whether any of it was good news.

For example, in early July we were told that a representative from the Texas Department of Aging and Disability Services (DADS) would be contacting us in a few weeks to arrange a time to assess Keith's eligibility for their services. We were happily surprised that she actually showed up a few days later, thereby speeding the process. Within 10 minutes of her arrival, it became clear that we were not going to benefit from the standard DADS program because of the stringent requirements of financial need for married couples: $2800/month gross income and no more than $3000 in assets (aside from your home or automobiles). We were disappointed, but not surprised. The DADS agent was very nice and genuinely wanted to help us find a solution. She then told us about the Community Based Alternative program which basically allows you to have the services of an institutional health facility at your own home. We were excited about this option until we learned that there is a 3-5 year waiting period!

Naturally, there's a loophole (apparently there is at least one loophole for every law passed in Texas). You can skip to the head of the line if you are in a facility for 30+ days and get an assessment immediately. Here's the secret password that should be your first words on Day 31: "CBA Bypass". Once those magic words are spoken, you are whisked to the top of the list and an agent conducts a home visit, arrangements are made and, voila, you have the benefits of state support in the comfort of your own home.

Only one problem. It doesn't work that way.

The truth is that you still need to qualify financially for Medicaid. The other more soul-shattering truth is that you have to stay in the nursing home about 6 months before you are considered for the CBA program. Those are two HUGE things to leave out of the conversation.

Both of those truths underscore the unarticulated public policy of impoverishing and marginalizing people with disabilities. To deny access to all the things that make life worth living so that a person might receive moderate support from an uncaring authority is patently un-American. There is no life, no liberty and no pursuit of happiness. We provide more support to visitors to our shores than natural-born productive citizens whose only limitations are physical.

This is a shameful situation and those of us who have the good fortune of physical wholeness have a responsibility to share those abilities to make a difference. I'm not talking about ditching your life and taking on the burdens of others. It's much easier than that. Simply share these stories with others, particularly politicians, social messengers and other market makers. In order to change the world it only takes three steps: copy, paste and just press SEND.

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

+++++++++++++++++++++++++++++++

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