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.