Thursday, August 28, 2008

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.

Monday, August 25, 2008

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.



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.


Keith Hogan
(512) 280-5402

Sunday, August 17, 2008

Don't 'dis' my ability!

As a natural innovator, entrepreneur and all-around (r)evolutionary, I am not the first choice to send in to deal with the system. I'm a direct communicator that just wants to get to the point. However, the keepers of the information mete it out in meager portions and it mostly leads to more questions rather than the answers being sought. Keith is much better at this game since he's had a lifetime to hone his skills. However, even he gets exasperated at the lack of solutions available for a problem that has been with our society since time began. That problem? How do we deal with the disabled in our society so that they remain productive citizens?

It has become increasingly clear that our nation's unspoken public policy is to impoverish people with disabilities. And Texas is no different.

In spite of Keith's professional and financial success, as well as the generosity of his friends and family, it is increasingly difficult to make ends meet. But, the truth is that he'll never be poor enough to get help from the state of Texas and, like most true Texans, he doesn't want to live anywhere else. Keith's forbearers moved to Texas before the Alamo fell. They have had a strong hand in shaping his hometown, Victoria, and have contributed to the economy in significant ways.

It is appalling that Texas which, as a state, has benefited greatly from his family's contributions, chooses to devalue Keith's potential by depriving him of the resources necessary to continue as a contributing member of society. And this goes beyond limiting Keith.

As his wife, I am happly committed to doing everything I can to support him in rebuilding his health and get back to participating in a life he wants. What this means is that I'm basically on call 24/7. We have very good Personal Care Attendants who are devoted to Keith. However they are people too and there are times that I have to fill in for them. In addition to managing that schedule, I also need to earn income and, when possible, take care of myself.

By denying financial support to Keith, Texas is also "dissing" my ability to contribute. Like Keith, I am a naturally entrepreneurial and highly productive person. However, the constant strain of managing the home healthcare experience sucks energy at an alarming rate. When I hear the candidates yammer on about the energy crisis I wonder if they are talking about fuel for the car or fuel for the caregivers? I can control how much I drive, however I cannot always control how much I am driven. Right now I'm running on the renewable energy of love, commitment and faith. What I need is money to cover everything else!

Saturday, August 16, 2008

Where's Your Wheelchair?

I know that you are all aware of the spiraling escalation of medical expenses. We have been made acutely aware of this firsthand with Keith's hospital stay and associated post-hospital cost of care. Fortunately Keith has very good insurance so the cost of the hospital care was manageable. The complete shock to the system was the aftercare.

On May 27th, Keith was sent home with a ventilator. While still in the hospital, we had been trained to manage the machine and were all reasonably comfortable with the work ahead. To be honest, managing his oxygen has been the easy part. As we've had to deal with disinterested 3rd party billers, burned-out state agency workers and just plain old bureaucratic triple-speak, managing my own oxygen has been a more delicate operation. However, no matter how disinterested the other party, or burned-out the workers, or how triple the speak you have no choice but to engage with the system. The system is not the clean, well-lighted place we would naturally seek for support and solace. However, it's all we've got for now. So, we take a deep breath and dive in.

Let me share one telephone encounter with you to establish a frustration benchmark. The Texas Department of Aging & Disability Services is the agency of record for dealing with state resource support for disabled citizens.

Surprisingly, the phone was answered on the first ring which gave me hope that things were going to go well. The woman on the line was pleasant, however when she heard that Keith was older than 21 and younger than 65, she became a bit less pleasant. Add to that he's on a ventilator and needs 24/7 personal care support, well, the bureaucratic gate clanged shut and I could hear her reaching for the metaphorical key. According to the State of Texas, anyone who is in need of 24/7 assistance has two choices: (1) relocate to a nursing home or (2) pay for everything out of pocket. Well, the first choice was not an option. Keith is extraordinarily gifted intellectually and his only limit is the inability to use his arms and legs. Being sentenced to a nursing home was completely unacceptable. As to the second option, well, we were already doing that without the permission of the State of Texas.

I calmly asked for clarification: "So, what your are telling me is that the State of Texas believes that the only solution for a person like Keith is to force him into a nursing home? There is no support available to help him continue a productive life?" She answered, "Yes, those are the rules of the State of Texas for people like your husband." At that point I thanked her for her 'help' and ended the conversation.

I went into the other room to give Keith the news. Naturally I was frustrated, angry and amazed that Texas actually endorsed taking a incredibly productive citizen and dumping them in storage rather than investing the dollars necessary to keep them an active and contributing part of the economy. Naturally, Keith wasn't surprised. He's lived with this his whole life. He could have ridden the system, but that was not what he was taught by his parents and grandparents. Obvoiusly he's physically disabled, but it's apparent to me and everyone who meets him that there are many more people who have their wheelchair on the inside. And, unfortunately, they are in the majority and have made rules that are in effect...for now.

Friday, August 15, 2008

The Story Begins...

My husband, Keith Hogan, is a remarkable man. He is 43 and has Spinal Muscular Atrophy. He's outlived his doctor's predictions by about 30 years at this point. His form of the disease is Spinal Muscular Atrophy Type 2. And, his film tells a lot of the story.

He entered South Austin Hospital with pneumonia on February 18th and, due to his inability to use his hands or legs, there was somebody with him 24/7 to be sure his needs were fully covered. Any night that I didn't stay with him, his mother did. For the most part he received excellent care from caring staff. There were some notable exceptions, but that's to be expected I suppose.

Keith did not return home until May 27th bringing new accessories: a trache, a ventilator and the need for 24/7 personal care attendants. This automatically doubled our PCA expense to almost $9000/month. We attempted to get help from the state of Texas, but don't meet the poverty level necessary for Medicaid and are not wealthy enough to continue paying out of pocket.

This is where the real work became clear and where our story begins.