I also plan to update this blog with a few thoughts on the healthcare reform bill that is becoming the law of the land. I want to wish you all a happy weekend.

Keith

I suffered respiratory failure on February 18, 2008 and was given a trache on February 25, 2008.  After 3-1/2 months in the hospital, I returned home on May 27, 2008 to continue my recovery.  At that time, Walgreens-OptionCare became my home healthcare provider. My wife and I were told that your company would accept the 80% payment from Medicare administered by Humana.  At that time, we were happy with the people at Walgreens-OptionCare, and we were promised that the remaining 20% would be written off by Walgreens-OptionCare, and therefore, would not be responsible for any costs beyond the 80%.  We were happy with this arrangement until the phone call we received on June 4, 2009.  At that time, we were told that they could no longer provide weekly delivery of oxygen in liquid form, which is the form that works best for me and is recommended by my doctor.

About a week later, I spoke with the Walgreens-OptionCare manager, Michael Davis, who told me that it was not financially feasible for them to continue to deliver oxygen in this form.  He went on to state that the financial agreements made under the previous management did not work for the company so they needed to be changed.  We asked him for this in writing so we could review our options and he agreed to do this.  Two days later I was informed via email that he was not going to do this because he had seen a comment that I made on Facebook which he felt was disparaging of Walgreens and therefore, believed that anything he put in writing would be taken out of context.  At that time he informed me that no oxygen would be delivered unless I agreed to pay out of pocket at the time of delivery.  About a week later, it was time for the next oxygen delivery and I was forced to sign an agreement committing to payment before the oxygen was delivered.  To say the least, I was signing under duress.

Since that time I have personally spent approximately $750/month on liquid oxygen.  Based on our conversations, we were under the impression that Walgreens-OptionCare would cover one delivery per month and we would cover the other 2 deliveries.  However, when we called Michael Davis about this agreement, he said that had changed.  Walgreens-OtpionCare would take direct payment from Medicare and then we’d have to worry about the rest.  I asked if we could get that in writing, and was told that it wasn’t necessary then Mr. Davis summarily hung up the phone.

Upon doing research, it became apparent that Walgreens-OptionCare was in violation of federal law specific to oxygen delivery:

As a result of the Medicare Improvements for Patients and Providers Act of 2008, there were several changes effecting services on or after January 1, 2009.  The changes are being made to comply with the Act’s requirements, but also take into account the patients needs for life-sustaining oxygen.

http://www.portableoxygen.org/Oxygen_guidelines.html

Specifically, this is the rule that we believe Walgreens-OptionCare is breaking:

• The supplier is prevented from arbitrarily switching oxygen equipment systems during the 36 month period. (example: switching from liquid oxygen or compressed to a concentrator)

Exceptions to this rule:

• The patient’s physician orders different equipment based on medical necessity.
• The Patient chooses newer technology.
• If the patient chooses a newer technology, then the patient will have to sign an Advance Beneficiary Notice (ABN) acknowledging that he/she may possibly have a financial liability for the newer technology.

Naturally, there are many more details to share about this case.  I hope my synopsis has given you a good overview of the situation.  Please feel free to contact me via email or telephone if there is more information you need to understand the situation.  I suspect many other patients are having similar issues with Walgreens-OptionCare here in Austin, Texas.  Apparently some Walgreens-OptionCare employees are upset, and are willing to testify to this effect.

We were recently told that not only was Michael Davis not reprimanded for his conduct, he was actually promoted to a position covering 6 regions.  I shudder to think of the people who are now dependent on his cost-cutting policies without regard to the impact on human lives.  One of the ripple effects of his promotion is that now Walgreens/OptionCare employees are being forced to be party to these dangerous decisions because they are fearful of losing their jobs.

We have brought this information to the offices of Representative Lloyd Doggett once again and will continue to raise this story to the highest level possible until we are heard and action is taken.

I appreciate you taking the time to review this information

Regards,

Keith Hogan

I have largely been responsible for hiring the PCAs that assist me on a daily basis, for most of the last 40 years. I find people that are compatible with me and train them to assist me with my daily activities.  I require assistance to do most anything and everything that an able bodied person largely takes for granted.  I need help with all of my personal hygiene as well as taking care of my personal business.  Naturally, this often develops into a fairly intimate relationship as my PCAs are aware of my personal business.  For the most part, they have been pretty discreet about the more sensitive information to which they are privy, but there is a certain lack of privacy that I have to live with as a result of my physical disability.

There have been a few occasions  that have left me feeling betrayed and anxious about my situation.  When I was very young, there was a PCA whom I will refer to as LS.  This person traumatized me and physically abused me.  One of the things he did was to hold a pillow over my face until I would panic because I could not breathe.  He would also poke his finger in my butt until I jumped.  He would laugh and then I would laugh a rather uncomfortable laugh just so we could move past that moment.  I now recognize that this was physical abuse, but as a child I didn’t know what to make of it.  I didn’t tell anybody at the time because I did not want to get LS in trouble even though I knew he was violating my personal space and acting inappropriately.  I have experienced other instances of abuse, as I believe most young people in America have, but these instances were cases of psychological or verbal abuse rather than physical abuse.

More recently, in 2007, a PCA whom I’ll call TB took advantage of me.  He seemed like a nice person, but his actions soon proved that he was a con artist.  A few months after he started, I got a late night call and he asked me to bail him out of jail.  Since he had thus far proven himself to be a good PCA, I did and he paid me back. A few months after that, he asked me to loan him the money to purchase a black BMW.  At first he made his payments to me on time and when he asked to lease one side of a duplex that I was renovating and converting to condominiums, it seemed like a good fit. After he moved in, the car loan payments came later and later and he was often late paying his rent. I think he may have had a gambling problem, but I am certain that he had a problem obeying the laws of the State of Texas.  TB’s employment came to an abrupt end when he forged my name to a check and cashed it at my Credit Union.  I quickly learned of this, and he didn’t come to work the next day.  After some digging, I discovered that he had an extensive criminal record and had attempted to commit identity theft upon me. Unfortunately, the local police department was reluctant to do anything because it was not a violent crime.  My wife, Ruth, and some friends helped me to gather evidence to present to the police department.  Sadly, no action was taken.  I couldn’t stand the thought of TB taking advantage of another person.  I felt as though I had to do everything within my power to prevent this, or I would be culpable in TB’s next crime.  Eventually, I helped trap TB and bring him to justice.  Nevertheless, TB only spent a few weeks in jail, and received probation for a period of five years.  Somehow he managed to make some restitution, but I am still owed a large sum of money by TB.

As my final example, I hired a PCA that I will refer to as JH. She told me that she suffered from depression, but I hired her anyway since I have a number of friends that also suffer from depression so I was familiar with that prognosis.  While JH was working for me, I fell in love and married Ruth Glendinning.  In retrospect, it is clear to me that JH was jealous of my relationship and angry that I married Ruth.  Stupidly, I thought that JH would eventually become accustomed to my new relationship.  Regrettably, this was not to be the case.   I suffered respiratory failure early in 2008 and I had to be hospitalized for a good portion of that Spring.  I was released from the hospital and allowed to return home with the support of a number of people including my wife and my PCA JH.  I began using a ventilator in addition to supplemental oxygen.  It was good to get out of the hospital and return home, but it was a new way of life for me, and I felt more physically disabled than ever before.  It was a complicated process getting everything ready for my return home. Things settled down after a while and JH expressed a desire to find employment elsewhere. I hired two individuals as PCAs to replace JH. I asked her to train the new PCAs and, while doing so, she expressed views to them that she held about her position which I did not condone as they were disruptive, disrespectful and unhelpful. I hired her replacements within 2 weeks of her expected departure. Soon after JH left, I learned that she had taken some of my medicine. I knew that she had her own prescription for one of the medications and I had said she could take a few of my pills till she could see her physician, however JH took 30-40 pills rather than the 4-5 I expected her to take. I feel as though JH had misappropriated my medication and that she abused her position with me and set up her replacements for failure. Apparently JH has endured some disruptions in her life including the end of her long-term relationship with her boyfriend. However, I believe that JH has serious unresolved mental problems that go well beyond clinical depression. I have tried to be honest with people who call seeking a reference for JH. I want to be professional, but I do not want anybody to suffer as a result of her actions.

These and other incidents have been on my mind the last few days and inspired me to write this post. It is a strange life I live depending on others to take care of my personal needs.  I want to wish you well in the year ahead. Please be cautious and take good care of each other.

I have great concern about this important work being in the hands of our legislators because I do not believe that we truly have a representative form of government so long as our legislators are beholden to lobbyists. I am very hopeful that the U.S. Congress will pass a healthcare reform bill that can continue to be improved upon in the years to come.  Until that time, the ever increasing cost of health insurance will prevent the United States from prospering. Today it’s generally accepted as a moral imperative that hospitals provide emergency care without regard to the patient’s ability to pay. It is enormously expensive to pay for a person’s healthcare once it has reached a point of rapid decline. We’ve all heard stories of how the insurance company CEOs and Pharmaceutical CEOs are being paid millions of dollars. I don’t think this would be as objectionable if healthcare in the U.S. wasn’t in such a deplorable state. Additionally, it’s impossible to applaud the financial success of those who gathered those dollars from the pockets of the fallen. Throughout my life, my family and I have made tremendous financial sacrifices to afford my healthcare. I do not live extravagantly and I know that I would be much better off financially if I wasn’t overburdened by the cost of maintaining my health. Opponents of healthcare reform claim that healthcare reform will increase the cost of healthcare for Americans. They ignore the fact that healthcare costs have been going up for all Americans at a much faster rate than the overall inflation rate. This has led to many thousands of individuals filing for bankruptcy and it will inevitably lead to the bankruptcy of the Federal government unless things change quickly.

Be assured, I am a fervent participant in the capitalist system. However, the words of Karl Marx’s famous quote resonate with me “from each according to his ability, to each according to his need”. I am also a Christian and contrary to many of the Christians pushing their message in the media, the Bible has a number of messages more reflective of the communist philosophy. For example, from Exodus 16:16-18: This is what the Lord has commanded: Gather of it, every many of you, as much as he can eat; you shall take an omer apiece, according to the number of persons who each of you has in his tent. And the people of Israel did so; they gathered some more, some less. But when they measured it with an omer, he that gathered much had nothing over, and he that gathered little had no lack; each gathered according to what he could eat.

I am not unlike many Americans. I am not independently wealthy, but I am not destitute. I am given very little incentive to be financial rewarded for being productive and, in fact, I am given much more incentive to be unproductive and financially destitute. I cannot afford to pay my healthcare expenses and, in fact, financial support to provide my healthcare is withdrawn as I become more financially productive in the private sector. All I can do is work to change the system. I think that people should be provided with the incentive to be as productive as possible and to be able to pay for as much of their healthcare as they can. However, that is not the way the US healthcare system operates.

I urge you to contact your legislators to support healthcare reform because in the words of the late Senator Ted Kennedy, access to affordable quality healthcare is a right, not a privilege.

I moved to Houston because of Texas Commerce BancShares. I was originally offered a job at TCB programming mainframe computers. At that time it was generally the place that people with disabilities, particularly people with mobility impairments, were placed. Perhaps I had the hubris of youth and a high opinion of myself, but I rejected this offer. A number of individuals advocated for me and I was offered a position in Loan Review.  As I was saying before, I would go from my apartment to a security garage, load up into my van, drive approximately 10 blocks to another garage, through the tunnel system in downtown Houston and into my cubicle at Texas Commerce Bank. It was a dehumanizing process. I didn’t feel like I was reaching my full potential as a human being. I couldn’t express my creativity or demonstrate my ability to manage very much at TCB. Nevertheless, I am grateful for the opportunity that job afforded me. It gave me a good grounding in credit. I am fortunate to possess the ability to learn from other’s mistakes which suited me well in later endeavors. Aside from the dehumanizing aspects of my job, I didn’t like the people I was living with and I felt like somebody was painting more lanes on the highway every day. The roads were getting bigger but there seemed to be more traffic on every square foot of pavement. The anxiety level I experienced was increasing the entire time I was in Houston.

I  worked hard and I met some interesting people, but I didn’t feel like I was making a difference in the world. I felt somewhat claustrophobic. At this point, I had the opportunity to move back to Victoria to work with South Texas Savings Bank. My family was the second largest shareholder in South Texas Savings Bank. With the Buhler family, we owned just over 50% of this financial institution. The bank was in financial trouble so I left Texas Commerce BancShares to work with Janet Stormont-Moeller. I began working as a consultant and soon became Vice President and Assistant to the President. The bank’s senior management was replaced and the financial health of the institution improved substantially over the next two years.

Moving to Victoria alleviated the feeling that I did not have a purpose in life. I enjoyed the challenge of working at South Texas Savings and helping restore its financial health.

Eventually I started to experience the same feelings that were present before I left to attend the University of Texas at Austin. Victoria Texas was the same town I left in 1987. The people in Victoria continued to treat me as if I was the same person I was in high school. My peers at other financial institutions would stare at me in public as though I was some sort of freak. I was often given the impression that people thought that I had used connections to achieve my position at the bank rather than my position being a reflection of my work. Others repeatedly remarked about the tremendous odds I had to overcome and I was heroic for doing more than just sitting at home. Although I should have been used to it, I didn’t feel as though I was being treated fairly.

With these experiences, it’s somewhat hard for me to relate to able bodied people. I can’t imagine that an able bodied white male in my position would have been subject to the same sort of ridicule or praise that I received. With my obvious physical disability, it’s easy for some people to discount me as a whole person. However, from my front row seat, I have to say that their lack of vision is a more damaging disability.

It was in high school that it really hit me that I was very different from the people around me.  Even though I had some physical limitations, I believed that I was smarter than my classmates, and that I deserved to be treated at least as well as they did.  It was a very difficult time in my life.  In high school, the jocks were practically worshiped and minor differences resulted in people being ostracized.  I was not even one of the geniuses, but I was part of the second smartest group with only occasional flashes of brilliance.  I had no artistic ability of consequence, and I was certainly no athlete.  I felt frustrated because I wasn’t overtly special.  I was moderately popular and I had my fair share of friends, but I always felt different and apart from everyone else.

Eventually, I started to take refuge amongst the outcasts at St. Jo’s.  They all drank and partied, but the important thing to me was that they accepted me.  I didn’t have to play any silly social games to be accepted by the outcasts.  In retrospect, all of the drinking and partying was really a waste of time.  The friends I made at that time seem to have all gone their own way, and it is difficult for me to explain why we were ever friends at all.  It is true that they were not pretentious, and they were all special in their own way.  Some were smart, some were artistic, some were theatrical, but all of them accepted me for the person that I was.  Yet, the partying got out of hand, and some did not survive unscathed.  I was more fortunate because I grew up and decided that all of the partying was counter-productive to my happiness and the achievement of the goals I had set for myself.  I wanted to get out of Victoria and have a life of independence and a career of my own. With my acceptance to the University of Texas at Austin, I was finally able to do just that.  This may not sound like much to you, but for some people with disabilities, a life of independence really is the impossible dream.

The other day a friend asked me what I thought were the ten biggest problems faced by people with disabilities. It impressed me because that question is not asked nearly often enough. I do have to say that this question posed a dilemma for me. First of all, I don’t feel qualified to answer this question for anybody but myself. Secondly, and most importantly, I don’t like to talk about myself which makes this blog quite difficult for me.

People with disabilities comprise an extremely large and diverse community. There are people with impairments in hearing, vision or mobility and there are those recovering from some sort of accident such as spinal cord injuries, amputations, post traumatic stress disorder, mental illness and emotional stresses. The diversity of need in this community cannot be overstated. Additionally, each person has their own attitude towards their disablement and how, or if, they want to move forward.

In my case, I have never been able to walk and I’ve always suffered from respiratory problems. It has always been my experience that I see the world and do things differently than a person who has been paralyzed after suffering a spinal cord injury. I have always felt a responsibility to answer questions and satisfy other’s curiosity whenever the occasion presents itself. However, I am still reluctant to answer questions that reflect anything other than my personal opinion.

Eventually I responded to my friend’s email with the following list:

1. People with disabilities suffer from a largely unrecognized and insidious level of prejudice
2. Public policy relegates people with disabilities to a life of poverty, rather than enabling their productive capacity
3. The Americans with Disabilities Act has failed people with disabilities and needs to be dismantled and rebuilt reflecting modern life
4. People with disabilities need to have full and equal access to:  (a) buildings, (b) education, (c) opportunity, (d) satisfying, economic productivity and (5) control of personal healthcare choices
5. Healthcare policy needs to be updated to encompass the technological advances that preclude institutionalization for chronic diagnoses
6. The diversity of the disability community must be acknowledge and addressed
7. Social integration through universal design must be a part of any social policy

This is not an exhaustive list and I know it is incomplete. Please let me know what you think and add to this list.

Now, we’re joining members of Democracy for America to up the pressure. There’s an open letter to the Democratic Caucus asking them to strip any Democrat who filibusters health care reform of his or her committee chairmanship.

I just added my name to the open letter. Will you join me?

http://pol.moveon.org/norewards/?r_by=-17429344-DpkVukx&rc=paste

Thanks!

Soon after my diagnosis, my parents adopted one of my brothers and several years later, they adopted my youngest brother. With a few notable exceptions, I was remarkably oblivious to my rather obvious physical disability until I was in middle school. There was the time when some teenagers, whom I presume were drunk, tried to run me off of Fulton Beach Road on a lazy Sunday afternoon. I wasn’t injured, but I was scolded for not driving my wheelchair into the ditch to avoid the pickup truck. Then at the age of 12 a security guard at San Juan Puerto Rico’s airport insisted that I stand up as we were going through customs to return to Houston. I know there was a language barrier, but I also think that the security guard was less than sensitive and lacked intelligence.

Being fairly bright and rather resourceful I was able to get around pretty well with the exception of steps, stairs and ladders. I found a way to get most any place I wanted to go and do most anything I wanted to do. I really became aware of my disability in junior high school. Until that time I played with the kids in my neighborhood. I drove my own wheelchair and played chicken with them on their bicycles. I guess we did the things that most kids do. In adolescence everything began to change. I had a serious respiratory illness in 7^th grade and I missed most of the school year. My classmates in Our Lady of Victory were told by the nuns of that I might not make it back to school. In fact, I later learned that my schoolmates were told to pray for me every day. I’d been told by some of my friends that I was not expected to live, but I always thought that this was just “crazy talk”. I never really considered my own mortality until I was in middle school. I had always been successful in all my endeavors up to that age and I really believed in my own invincibility the way only young men can believe that. After attending Our Lady of Victory I took the opportunity to attend public high school and have a homebound teacher. I rarely actually attended high school since my teacher would bring lessons home to tutor me in all my classes. The fact that I had a crush on my homebound teacher was certainly an incentive not to actually go to school. Even with that incentive, eventually I became bored. I was frustrated and did not feel academically challenged. I begged my parents to let me attend St. Joseph High School. Although I lacked the necessary credits to stay in the same grade as my former classmates, I was generally regarded as one of the brightest students at St. Joseph High School. Many of my athletic friends didn’t seem to want to be bothered with me. My schoolmates would often treat me as though I was asexual telling me intimate personal details about their relationships. Dating did not seem to be an option for me, let alone any sort of intimate relationship. I felt like an outsider in many ways. Despite all that, I persevered and graduated from St. Joseph’s High school. By this time, my family was dealing with a significant financial reversal and I was told that I would not be able to attend the University of Texas at Austin. Rather I should attend The Victoria College and maybe I could transfer to the University of Texas later. Afterwards, I learned that many members from my family were concerned that I would not be able to make it living away from them in Austin. Eventually I graduated from The Victoria College and transferred to the University of Texas at Austin in the summer of 1987. Of course, that’s another story.