Sober at the Party

Ambit Energy

2009-12-18T09:31:00.005-06:00

Hello and Happy Holidays!

As all of you know, the last 18 months have been a healthcare adventure for me and Keith. I think we've done a great job surfing the chaos, but we have been looking for the right vehicle to take us forward into 2010 and beyond with greater financial security. We began researching financial opportunities with our good friend Beth Krueger, looking for those which would allow us to fulfill our personal mission to "do good and do well." We recently found that opportunity through our friend Bill Mclellan who told us about Ambit Energy. A company, which, in the words of its founder, Jere Thompson Jr., has a vision to be the finest and most respected retail energy provider in the United States.

So, Why Ambit Energy?

Like many of you, we have been offered the 'opportunity' to sell friends & family a wide range of costly products over the years. What we like about Ambit Energy, is that it's just offering you the chance to purchase a product you already use at a lower price. Period. If you want to take it further and develop your own micro-business, great, but absolutely not necessary to benefit from the Ambit Energy opportunity of lowered energy rates.

Truly, energy is the perfect product to offer: everyone needs it, everyone understands it, everyone uses it every day, and everyone likes to save money on their monthly bills. Energy demand is growing and states all across the country are just beginning to open their energy markets to competition.

Texas is leading the country as a model for deregulation. It is the 11th largest electricity market in the world. In Texas alone, residential customers spend over $24 billion dollars every year and most of these customers are still paying the highest rate in the market. Ambit Energy provides an opportunity to save money and earn income at the same time.

Unfortunately, we live in Austin and cannot personally benefit from the Ambit rates at this time. However, you can click here to see if your area is part of the program, and then see how much you can save on your own home energy costs. In addition to Texas, Ambit Energy also offers lowered energy rates in New York and Illinois, with an eye to expanding the opportunity nationwide.

So, there's the story. Thanks for taking the time read this post and we hope that you'll check out the Ambit Energy opportunity to see if it works for you, your family and your friends.

Have a great holiday season!

Ruth

Feeling brave? Here's a scary peek at the high cost of long-term care....

2009-12-08T00:17:00.005-06:00

Genworth Financial has created an incredible online tool which lets you estimate your cost of long-term care as far as 20 years in the future.

Check out the interactive map HERE.

Reports you can download:

Your Thoughts Are Cordially Invited…

2009-11-30T20:52:00.001-06:00

From Keith Hogan's blog Civil Wrongs

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....

Please continue reading Your Thoughts Are Cordially Invited... here

From Abled to Labeled

2009-11-24T12:55:00.002-06:00

"While life may not be perfect, it’s still life and it's still to be enjoyed in anyway possible."

http://tinyurl.com/yllttym.

Into the Impossible...

2009-11-24T09:19:00.001-06:00

“The limits of the possible can only be defined by going beyond them into the impossible.” Arthur C. Clarke

Civil Wrongs

There's always something....

2009-11-21T00:34:00.002-06:00

The other day Keith was wondering what he would write about in his blog this week. Fortunately, when you see the world from a different perspective, there's always something.

~~~~~~~~~~~~~~~~~~~~~~~~~~

Second-Class Citizen Blues

by Keith Hogan

Yesterday, I went to a meeting with the insurance salesman to discuss managed Medicare products. My attorney, who is very well regarded for his disability law knowledge, recommended him to me. Unfortunately, the insurance salesman’s office was located in a historical building that was completely inaccessible to me. I could not even use a ramp or an elevator in the back of the building because there wasn’t one. I realize that this was a building of historic significance, but it was disheartening to find that it maintained the historical disregard for people with disabilities.

Please continue reading at http://civilwrongs.wordpress.com/2009/11/18/second-class-blues/

Humana: Our 800 Pound Gorrilla in the Oxygen War of 2009

2009-10-05T13:15:00.003-05:00

A couple of weeks ago we were contacted by Humana to discuss Keith's oxygen situation. Specifically they were concerned that the home healthcare provider was requesting reimbursement from Humana/Medicare while still taking cash from Keith for his oxygen delivery. Additionally, as a Humana member, Keith has a cap of $6.25 per delivery as opposed to the ~$200 per delivery that the home healthcare provider was collecting. I informed Humana that we had been in contact with Rep Lloyd Doggett's office [D-TX] about this situation and that it was being investigated at the federal level. At the very least, the home healthcare provider is clearly violating federal law regarding oxygen delivery as detailed in the Patients & Providers Act of 2008.

The work to bring this to the attention of the right people has been exhausting. The amount of energy necessary to find people who care has been appalling. For me, insuring that Keith has the oxygen he needs to continue healing is of paramount importance and that has been the primary motivation to move forward. However, I am also driven by the unknown others who are being affected by this home healthcare provider's policies in this region. To top it all off, it sickens me to see the recent advertisements by this company expressing their commitment to their clients when I know our experience on the local level has been quite different. And, we are not alone. There are many oxygen dependent clients who are experiencing similar issues. I'm hopeful that with Humana on our side that we can not only sort out Keith's O2, but improve the options for others as well.

The Cost of Failure to Enact Health Reform

2009-10-02T21:31:00.002-05:00

The Robert Wood Johnson Foundation and the Urban Institute have released a study that the groups say underscores the financial necessity of reform.

The report breaks out the coverage and cost estimates for each state. Below is a snapshot of Texas' data. You can see it in larger, clearer detail on page 57. If you live elsewhere, the state projections begin alphabetically on page 14.

Researchers from the Urban Institute used their Health Insurance Policy Simulation Model to estimate how coverage and cost trends would change between now and 2019 if the health system is not reformed. The report shows that under the worst-case scenario, within 10 years:

The number of people without insurance would increase by more than 30 percent in 29 states.
In every state, the number of uninsured would increase by at least 10 percent.
Businesses would see their premiums increase—more than doubling in 27 states.
Even in the best case scenario, employers in 46 states would see premiums increase by more than 60 percent.
Every state would see a smaller share of its population getting health care through their job.
Half of the states would see the number of people with ESI fall by more than 10 percent.
Every state would see spending for Medicaid/Children's Health Insurance Program (CHIP) rise by more than 75 percent.
The amount of uncompensated care in the health system would more than double in 45 states

Read the full report HERE.

Physical Disability v. Fiscal Disability

2009-09-06T15:37:00.001-05:00

We received the following explanation of earning limits from our very smart, experienced lawyer who has a particular talent for simplifying & communicating the rules guiding participation in Medicaid programs. Keith & I are pretty astute and have had a reasonable amount of experience decoding legalese. We've had to read it a few times and I think the next step is drawing a diagram, LOL.

Start practicing your decoding now, it only gets more complicated!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I'm glad you asked. Here are responses as to the short-term and long-term questions:

1. Short-term: To prepare an answer, I constructed the attached spreadsheet for calculating how much income you can have under Buy-In. That in turn led me to review the new HHSC Buy-In rules, and I found that the $2,167 limit applies only to earned income. There is no limit on unearned income (such as SSDI income). That is because under the old rules, all but $674 per month of unearned income had to be paid as a premium for Buy-In coverage. The new rules cap the premium at $500 per month, but they still don't include unearned income in the income cap (250% of poverty level) on countable earned income. And the first $65 of earned income plus one-half the rest doesn't count. Therefore, bottom line, you can have a maximum of $4,399 of actual earned income (only $2,167 of which is countable), and you can have unlimited unearned income (of which you will have to pay $500 as a premium).

That puts Buy-In back in the running as a possibility, but I'm still strongly recommending you look first at StarPlus to see what level of benefits it offers. You can get into Buy-In at any time later as your earned income develops. We do still have the problem under StarPlus that any income over $2,022 per month (after deduction of medical premiums) has to be paid as a copayment; and that program counts all earned income (no deduction of $65 plus one-half the rest).

2. Long-term: Your more general question motivated me to research a Buy-In issue that has puzzled me: what does it really mean that to qualify for Buy-In you have to have a disability as defined by SSA, "except the requirement that the person be unable to engage in any substantial gainful activity does not apply."? Here is the answer I've come up with, somewhat tentatively (excerpted from my summary of Buy-In, attached):

Under the Social Security Disability rules, a person with actual gross earned income exceeding $980 per month is (with some exceptions) presumed not disabled. The above-quoted rule removes that presumption. Where does that leave us? The answer would appear to require reference to the Social Security Administration's disability determination rules, which state that person who is not currently engaging in "substantial gainful activity" as defined in the rules may or may not meet the disability definition. If not, the next inquiry is whether the person's impairments are "severe." If so, they ask whether the person has an impairment that meets or equals the definition of a "listed impairment." If the answer to that question is also "Yes," then the person meets the definition of "disabled." This may resolve the apparent paradox that one can be engaging in substantial gainful activity (making over $980 per month) as defined by the Social Security Disability rules, yet still meet the "disability" requirement of Medicaid Buy-In. Notice that an individual in this category is likely to lose the Social Security Disability benefit and, after 24 months, the Medicare benefit. However, they can still have full medical coverage under Medicaid (for a very low premium if they have no unearned income) and $4,399 per month earned income. (Footnote: The basic rule on the 5-step process is at 20 C.F.R. §404.1505. It is broken down more specifically at POMS DI 22001.001 et seq. See especially the chart at DI 22001.035. The author does not practice in the area of disability determination, and these complex rules can be difficult to apply. Therefore, it is particularly important that the planning decision in such a case be based on advice from a specialist in this practice.)

The C.F.R. and POMS provisions cited in the footnote are attached.

Bottom line, it appears you can keep Medicaid Buy-In as long as your earned income is below $4,399 per month, because your condition is clearly severe and I'm sure you have listed impairments.

Whether you can also keep SSDI income at that level of earned income is another question. If you look just at the 5-step sequential evaluation chart, it would seem not, because you would be engaging in substantial gainful activity the chart says you should be denied at the first step. However, see the attached excerpt from a treatise on disability determinations for some important conditions and exceptions. Most importantly, "impairment-related work expenses" are deducted from earned income for the purpose of determining whether you have $980 per month earned income; and there are lots of other deductions, trial work period rules, etc. From a quick reading of it, because substantial gainful activity is an exception to the rule that you keep the disability benefit as long as your impairment continues at the same level, I think that (after a trial work period) you would lose the SSDI and (after 24 months) Medicare if you had earned income on a sustained basis over $980 per month (after deductions for IRWE, etc.). However, that still leaves you with up to $4,399 per month earned income AFTER those deductions. For example, if attendant care and other IRWE costs $5000 per month, you can have up to $9,399 per month earned income.

In summary, I've found that Buy-In eligibility won't be affected by your SSDI income, and you can have up to $4,399 per month earned income while still qualifying for it. StarPlus is much more restrictive on income, essentially requiring (at your income level) that any earned income be paid as a copayment (but not counting Ruth's income or assets at all). Long-term, you can have acute-care benefits plus limited home care under Buy-In if you have as much as $4,399 per month earned income, AFTER deduction of whatever attendant care, etc. you can deduct as income-related work expenses (probably several thousand dollars per month).

A Letter from Rep Lloyd Doggett [D-TX]

2009-08-10T17:48:00.000-05:00

Dear Ruth:

You have probably heard about the organized group that disrupted my recent neighborhood office hours in South Austin. They came not so much to be heard as to deny others the right to be heard. And this appears to be part of a coordinated, nationwide effort.

While much has been reported about their protest, little has been explained about their broader agenda. During their protest, they made clear that they were not just determined to halt new health care reform, but also seek to end Social Security and Medicare. Now one of the organizers of this disruption has articulated her vision that we should rely exclusively on private education. Click here to read her own words as it appeared in the Statesman recently.

In visiting at local gatherings of teachers preparing for the new school year, I remain hopeful about public education-all that it can do to bind our community together and prepare our youth for tomorrow. I reject the extreme notion that public education or public health care deserve no place in our country.

As we return for a vote in September, I am more committed than ever to winning approval of legislation to offer more individual choice to access affordable health care. Too many of our neighbors go uninsured or underinsured; too many, after years of paying premiums, find themselves with inadequate coverage once they become ill, and too many are denied coverage because of pre-existing conditions. Attached is a recent article that I wrote explaining why I believe that the legislation on which I have been working in the House Ways and Means Health Subcommittee represents an important step forward in addressing these concerns. I will be speaking at a major public gathering in support of health reform at 3 p.m. on Saturday, August 29 at First United Methodist Church, 1201 Lavaca in Austin.

As always, I welcome your advice on these and other federal issues.

Affordable Health Care Indispensable to Healthy Economy
U.S. Rep. Lloyd Doggett (D), Senior Member of the House Ways and Means Health Subcommittee

I have been seeking a meaningful answer to the many shortcomings American families encounter with health care. Our House proposal has now won endorsement from the American Medical Association, AARP, and Consumers Union. But during recent Central Texas meetings, I have heard from some neighbors with legitimate concerns about the complexities of our approach, others who suffer from a steady diet of cable television misinformation, and a few who are just against anything that President Obama favors. Here is how this imperfect bill affects you.

Health care peace of mind --If you are among the 1 in 4 of our neighbors with no health insurance, the 24,000 additional Texans who lose coverage each month, or the many who have insurance with more exceptions than coverage, you will finally be able to get affordable health care through a new Health Insurance Exchange. An estimated 96% of the coverage available through this new marketplace will be from private insurance carriers subject to new national standards and no longer able to decline those with preexisting conditions. One alternative available through the Exchange is a public plan similar to Medicare but subject to the same standards as the private carriers. Like Medicare, the government would not own health care facilities or employ physicians. You can keep the same doctor, and health decisions will continue to be between you and your doctor.

Competition cuts costs -- Budget analysts project that in a decade only 4% of Americans under age 65 will choose this public plan option. What some shamelessly call a "government takeover," is in truth this very modest reform. The public option expands individual choice and spurs real competition among private insurers instead of just pouring billions more into the existing system that is failing too many while doing little to control costs. Opponents, who always insist that government cannot do anything well, now claim that a little public competition threatens these private insurance giants.

Ending coverage games --Even if you already have satisfactory coverage, perhaps through a large private or public employer, you gain much from this initiative. Insurers are prohibited from refusing to renew coverage, charging wildly different premiums to different people for the same coverage, using policy fine print to deny needed coverage, or shifting to you the cost of catastrophic illnesses. And insurers have less justification for substantially increasing premium and copays, while cutting benefits. As President Obama said, "Reform is about every American who has ever feared that they may lose their coverage." No longer will losing insurance prevent your seeking a better job or starting a new business.

If you rely on Medicare, you will get better access to preventive services and medications, including gradual closing of the "donut hole" gap in drug coverage. Increased payments to physicians means more will accept new Medicare patients.

To those fearing the "rationing" of health care, look more closely at existing rationing. In 2006, 22,000 Americans died because they lacked health insurance-that's real rationing. This bill ends rationing that already occurs every day.

Small businesses win -- With skyrocketing costs, limited bargaining power, and routine discrimination, many small businesses are struggling to maintain decent coverage, paying 18% more per employee than other employers. This bill ends coverage games for small businesses just as it does for individuals. For many small businesses, the new Health Insurance Exchange will offer lower cost, higher quality coverage. Eligible businesses will get rates and a wider choice of plans, currently available only to large employers. For most small business owners concerned that they will be penalized for not providing insurance that they cannot afford, there are tax credits to assist many with as much as 50% of the cost and a complete exemption for the smallest with an annual payroll below $250,000. And I want to do even more.

Keeping the price affordable -- If you are a taxpayer concerned about costs, covering the many uninsured does initially add about 4% to the cost of the current health care system. But rather than incurring more public debt, we pay for this -with about half coming from savings through improved health care delivery and most of the rest from a surcharge on those with incomes over $350,000. A family with $500,000 in income would pay an extra $1,500 a year. Other revenues are gained by closing some tax shelters and international tax avoidance schemes that I have fought for years. Additionally, this bill transitions us from a sickness system to a wellness system, which will save costs as people access the preventive care and other services they need on the front end rather than seeking more expensive care after becoming really sick.

If we can get a better handle on health care costs, which have consistently spiraled faster than inflation, families can devote less income to health care, employers can give raises rather than just pay higher premiums, and we can ensure Medicare's long-term sustainability.

I do agree that this bill is no panacea. It is not what I would have written by myself. During the legislative process, it will be changed, hopefully, to do even more to contain costs. But it can lead us to a victory for healthy families, a healthy economy, and a healthy America. Let's keep at improving it until we get this important job accomplished.

Sincerely,
Lloyd Doggett

There's been a little complication with my complication

2009-07-24T16:03:00.000-05:00

After speaking with a very helpful woman at the Austin Social Security office by phone and then confirming what she told me online, I set off on what I thought would be a quick trip to the Social Security office to change Keith's birthdate. The trip to the office itself was pretty simple, the real trip started once I got in the door.

As requested, I had brought Keith's birth certificate, Texas ID, Social Security card, my Power of Attorney, and the signed form SS-5. I laid out it all out on the counter for the clerk so we could get the birthdate changed and get on to the next set of hoops in our quest for Keith's health benefits.

The clerk looked at the assembled information, scanned the birth certificate and honed in on the signed SS-5 form. He picked it up to look closer and then told me he didn't think that Keith's stamped signature was going to be acceptable to the Social Security Administration. He went to check with the office manager and I heard her shrill voice in the background, "Oh, no! We do not accept rubber stamp signatures in this office!" [this is somewhat amusing when you consider that just about every official document you receive from a government office is finished off with a 'rubber stamp' signature, lol].

The clerk came back to the window a few minutes later and confirmed that despite all the evidence arrayed in front of him, the signature immediately stopped this transaction. I explained to him that the signature was Keith's legal signature since he cannot use his hands due to the progression of his disease. The signature the SSA was denying has been accepted on all legal transactions up to and including Federal banking transactions from when Keith was a bank officer several years ago. He said that was fine for the other organizations, but the Social Security Administration was directed by the Homeland Security office standards which are separate from any other Federal standards.

I asked him for a solution. He had two suggestions:

Have Keith come into the office with me or an attendant so his hand could be held & directed to make 'his mark' [as an official policy, this sounds shady to say the least]; or
Have Keith's doctor write a letter stating that Keith was not competent to sign his name, therefore I or someone else could sign for him.

I just stared at the clerk for a moment and then said "So, let me get this right. Rather than using his legally approved signature stamp to correct an error created by the Social Security Administration, you suggest that he either be physically 'directed' to sign or get a letter declaring him incompetent so that I or someone else could sign for him? And those are the only legal options that the SSA allows?" He said, "Yes, those are the only options available."

At that point, I had no choice but to gather all the paperwork, IDs and the certified birth certificate, and leave the office before I did something that required the security guard in the corner to put down his book and take action.

As I drove down I-35, I kept thinking about the movie Brazil and looked up some quotes when I got home. This one seems to sum my experience pretty well:

Sam Lowry: I assure you, Mrs. Buttle, the Ministry is very scrupulous about following up and eradicating any error. If you have any complaints which you'd like to make, I'd be more than happy to send you the appropriate forms

Medicare Improvements for Patients and Providers Act of 2008

2009-07-07T19:58:00.001-05:00

H.R. 6331 To amend titles XVIII and XIX of the Social Security Act to extend expiring provisions under the Medicare Program, to improve beneficiary access to preventive and mental health services, to enhance low-income benefit programs, and to maintain access to care in rural areas, including pharmacy access, and for other purposes. Read more HERE.

Intellectual Oxygen!

2009-07-01T00:04:00.004-05:00

We're still contending with oxygen issues. I found the website Portable Oxygen tonight which incredibly informative and translates the "medi-speak" into language that is meaningful.

Pete Wilson's summation of the Medicare rules of oxygen delivery were especially informative and I believe will be very helpful to our case.

If you or anyone you know needs to learn more about O2, I highly recommend checking out Portable Oxygen!

The charges...so far.

2009-06-06T22:30:00.003-05:00

I don't know if they'll add more charges for lack of insurance or reckless endangerment or resisting arrest or fleeing the scene of an accident...I sure hope so!

Rude Awakening by a guy who was NOT sober at any party!

2009-06-06T09:08:00.006-05:00

Keith's PCA Ken knocked on our door at 6:30 this morning and said "I think my truck has been stolen and Ruth's car is totaled" I went outside and I was speechless. Apparently, a drunk driver had jumpe d the curb, hit the back of my car and rammed into Ken's truck with such force that it was knocked into the street. His truck wasn't stolen, it had been towed by APD. With the insulation of the house and the noise of the machines back here in bedroom, we didn't hear a thing. Here's the story from the neighbors: This guy was speeding down the street, jumped the curb, lost control and wiped out the cars. After he saw what happened, he jumped out of his car, ran down the street taking his clothes off and tried to get into his house which is just around the corner. Our neighber down the street, chased after him, grabbed him and held him for the police. The driver is booked into Travis County Jail. He has a whole slew of charges including possession of marijuana, driving while intoxicated and failure to stop and give information. Oh, yeah, he also doesn't seem to have insurance. We're waiting for Progressive to call back. Here are some photos of the damage, thank God none of us was hurt.

Oxygen deprivation

2009-06-05T09:09:00.000-05:00

Keith got a call from Walgreen's Home Healthcare yesterday. Apparently Medicare has informed Walgreen's that only one delivery of oxygen per month will be covered. Currently, the liquid oxygen is delivered weekly.

Yeah, you heard me right, Medicare has declared that Keith can only get oxygen once a month.

Some solutions:

Get a detailed explanation & prescription from the doctor as to why Keith needs an average of 3L/minute of liquid oxygen. [Um, because it's the only way to stay alive on this planet?]
Fill the garage with oxygen canisters and store a highly flammable liquid during the hot Texas summer.
Find a spare $2000/month to pay for the other 3 weeks of oxygen

Naturally we're working towards the first choice, lol.

I'll let you know what happens!

Ruth

Thank you for shopping at Mayo...

2009-06-04T19:28:00.002-05:00

My friend Margaret just got back from the Mayo Clinic. You can learn more about why she went on her facebook group page To Find the True Cause of My Crippling Fatigue Crazy.

Here's her report on what happened:

just prior to going to the mayo clinic, my symptoms exacerbated: i had a mylar rash, felt like i had a fever (sometimes chills, too), and once experienced warmth in my legs.

Mayo reminded me of that movie Gattica. There were no sick-looking people, or people w/ oxygen or no hair; just old people. The first physician I saw promptly told me he would not accept my saliva or other samples, indicating low sIga, b/c they were not deemed accurate. He then interrupted me as I began my symptom list and told me neither chronic fatigue or another new bodily symptom I cited "would be addressed." He then handed me a 2-year old printed-off-the-internet article (not even the Mayo article) on Chronic Fatigue Immune Deficiency Syndrome (really!?). Then he made me an appointment with the psychiatrist. Due to an emergency, he was unable to meet w/ me the following day, but a different, and very kind physician did. I asked if my new & weird symptoms had an explanation (shogren's, as my current doctor thought, Lupus, due to the rash, etc.), and he said, "yes, chronic fatigue immune deficiency syndrome." I asked if this meant my immune system was more susceptible, and he said, "no." I asked how I was supposed to take care of my children if I can't lift my head, and he said, "I'm so sorry." I get that there's little interest in helping tired women, but 10 vials of blood later, armed with only a high iron content and possibly a low Vitamin D level (again), they were content to send me home (kick me out). They didn't even have the results of my circadian pee test (everyone holds a GAP drawstring-looking bag w/ a jug that holds their pee in it). That was the highlight: the nurse who handed me the bag with the jug said, "Thank you for shopping at Mayo."

Health Care in Rural America

2009-05-04T10:15:00.004-05:00

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

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

Ruth

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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

Dear Friend,

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

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

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

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

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

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

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

Sincerely,

Jenny Backus

Department of Health and Human Services

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

Coalition to Advance Healthcare Reform (CAHR)

2009-04-01T20:34:00.003-05:00

I found this organization today (yeah, I know, it was formed in 2007, but I've had a lot going on, lol). I checked out the list of businesses in Texas who are members. Hopefully there will be more soon. I know that once we have our home healthcare company set up, we'll do what we can to patronize businesses such as these that are committed to creating market-based solutions to healthcare reform.

The Coalition to Advance Healthcare Reform (CAHR) is an active working coalition of business leaders and employers. We are dedicated to engaging in one of the most crucial domestic policy debates of our time - the health of every American. From Capitol Hill, to state legislatures, to inside our boardrooms we are committed to solving this crisis, because it threatens the health of our people and the economy.

At the current growth rate, healthcare costs will be 22 percent of the United State's gross domestic product by 2015, which will negatively impact the competitiveness of U.S. businesses in the global marketplace and be detrimental to American workers. By next year, the average Fortune 500 firm will have a healthcare bill that exceeds its net income. And today, 47 million Americans are living and raising their families without health insurance.

Action must be taken to stop these alarming trends and we believe healthcare reform must happen before 2009. Waiting longer - until 2012 or beyond - is simply not good enough for the millions of uninsured Americans, businesses struggling to provide affordable benefits or the insured who fight to keep up with rising costs for coverage and care.

Through this newly formed organization, the business community can join together with other likeminded leaders, to advance meaningful, market-based solutions to this crisis. By advancing a set of core principles to guide and shape state and federal policies embraced by the coalition, the business community can, and should be, in a leadership position to advance solutions that reverse rising healthcare costs, solve the problem of the uninsured, and dramatically improve the quality of care for every American.

You can learn more HERE.

I think my DAD's got a new gig upstairs...

2009-03-31T00:01:00.009-05:00

Great news! We received a letter on Saturday advising us that Keith had moved to the top of the list for the Texas DADS STAR+PLUS program! This came as quite surprise because when we signed up in July 2008, we were told that it was a 2-3 year waiting list.

From the website:

STAR+PLUS is a Texas Medicaid program that provides health care as well as acute and long-term services and support through a managed care system. It is administered by the Texas Health and Human Services Commission (HHSC). Services are provided through HMOs. [The two HMO options available in Texas are Amerigroup and Evercare.]

Translated into words we want to hear:

Once qualified, Keith will get financial support for personal care attendants [approximately 40 hours/week; perhaps more!]
Coverage for medical supplies
Coverage for durable goods

There are many program details beyond those three items, but those are huge elements of making home healthcare work!

So, we have 30 days from the date of the letter to submit an application to the program which will lead to an in-home assessment to determine the next level of qualification. Fortunately we have Clyde Farrell and Leah Cohen assisting us with this process. Naturally, we'll keep you informed of the story as it unfolds!

About the title of this entry, since my Dad passed away earlier this month, I like to think that he's up there smoothing the way for good things like this to happen.

The Cost of Inaction

2009-03-30T10:00:00.005-05:00

I received a link to The Cost of Inaction report from the White House Office of Healthcare Reform. The opening paragraph is noted below:

Americans across the country are demanding comprehensive health reform and cannot afford to wait any longer for Washington to act. Businesses and families are struggling as costs continue to skyrocket. More and more Americans find themselves uninsured. Those Americans fortunate enough to have health insurance often don't get the quality care they need and deserve. The Costs of Inaction highlights the flaws in the health care system and demonstrates the cost of maintaining the status quo. Organized into three sections - Escalating Health Care Costs, Diminishing Access to Care and Persistent Gaps in Quality - the report shows how the current system has failed millions of Americans and why we must enact comprehensive health reform this year.

Please click HERE for the rest of the report.

We're going for 10,000!

2009-03-28T10:37:00.005-05:00

We have had 9,425 views of Keith's video on YouTube, "The Lucky Mutant". It was posted on 04/08/08 and we'd like to get 10,000 views by 04/08/09.

Keith has gotten great feedback from folks who have young children diagnosed with SMA who are happy to see that their kids can have a full life, despite the diagnosis. You can watch the video here, please share this LINK with your friends!

Measure Offers Choice And Independence For People With Disabilties

2009-03-24T21:48:00.002-05:00

Please contact Senator Tom Harkin and Representative Danny Davis to thank them for reintroducing the Community Choice Act. And be sure to contact your political representatives to support this act too!

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

Measure Offers Choice And Independence For People With Disabilties
by Harkin Press Staff

Disability advocates from around the country travel to Washington to rally with lawmakers
A measure introduced today in both the U.S. Senate and U.S. House will offer choice and independence for people with disabilities. The Community Choice Act, legislation sponsored by Senator Tom Harkin (D-IA) and Congressman Danny Davis (D-IL), will bring people with disabilities into the mainstream of society and provide equal opportunity for employment and full involvement in community activities. It allows people with disabilities who need an institutional level of care the choice of receiving their services and supports in their own communities, rather than in an institution.

“The legislation sends a message to the rest of Congress and to America: We want real homes, not nursing homes,” said Harkin, one of the authors of the Americans with Disabilities Act. “Our current system effectively forces people into institutions and requires them to impoverish themselves in order to become eligible for the assistance they need. It is wrong – and this legislation changes it.”

“This legislation allows States and consumers to obtain more cost effective long-term services in the most appropriate setting for the individual. Individuals with disabilities will be able to chose between services in an institution or services at home permitting more independence, more dignity and reduced cost,” said Congressman Davis. “Without any new entitlements, The Community Choice Act will allow the dollars to follow the person, and allow individuals, or their representatives, to choose where and how to best receive services and supports.”

Under the U.S. Supreme Court’s decision in Olmstead v. L.C. (1999), individuals with disabilities have the right to choose to receive their long-term services and supports in the community, rather than in an institutional setting. The Community Choice Act would amend Title XIX of the Social Security Act to make community-based attendant care services an alternative for Medicaid recipients who are “institutionally eligible” for nursing home care.

Disability advocates from around the country traveled to Washington today to rally with the lawmakers as they announced the introduction of the measure, which is supported by all of the major disability organizations.

Nick Dupree Knows What He's Talking About!!!

2009-03-24T09:29:00.001-05:00

Disability A “Social Construct?” Not If You Lack Supports

Who is more disabled? The successful banker who happens to be quadriplegic, and gets up each weekday (with the help of assistants) and goes to work, contributing to the community and pulling down over $100,000 a year? Or the dude who still lives in his mom’s basement, who can do chin-ups, run and jump, but is unwilling or unable to contribute to society? Who is more disabled?

Traditionally, society would tell you the banker is disabled. Dumb society. Clearly, he’s not as disabled as the basement guy! If we measure ability according to contribution, the banker is way ahead. But society usually measures things based on appearance, and the banker looks “dependent,” “confined to a wheelchair” and “trapped” to most people.

Does this mean disability is a purely social construct? And we should all go write disability studies papers about how disability is a false construct used by a pervasively ablist society to oppress those who are different? Not so fast.

It all depends on supports. If your caregivers are responsive and willing and able to support all your needs, your disability becomes a minor, almost social/cultural difference, like hair color or left-handedness. You can contribute in your own way, as everyone else can. But if you don’t have good supports, that same person may end up with repeated illness, lying helplessly on their back, unable to contribute. The banker who made $100,000 will make $0 and live in a dim nursing home without the support of his assistants. Suddenly, he is MUCH MORE disabled than the basement guy (who at least always has choices). Suddenly, it’s not a social/cultural difference the banker has the luxury to debate; he is watching his peers contribute and benefit in society while he’s unable to leave his room regardless of his wishes, and the cultural assumptions of his inability have become true, a prophecy fulfilled by the system’s outdated model. He’s suddenly very different, and it’s not cultural at all. It’s a real, physical difference, and a huge barrier.

Unless we have reliable access to proper personal attendants and supports in the community, unless we pass the Community Choice Act and offer REAL choices of community living vs. living in a hopeless institution’s back ward, then debating “disability as a social construct” will be the luxury of academics, while those with severe disabilities hope the nurse will let them turn on their side today. Until we have the help we need, our problems will be very real and physical, with the invisible cultural barriers several rungs up the ladder, something we HOPE we can confront once we climb up.

And once more and more of us with severe disabilities are living independently and publicly seen doing so, the appearances, and thus the societal perceptions, will shift, and the assumptions that we are helpless, can’t contribute and need to be in institutions will dissipate. We can begin to reverse that vicious cycle if both appearances and the realities of what we’re contributing change.

Now we have to get the needed services and supports to change the lives of people with disabilities. And that’s what the Community Choice Act is about.

The Community Choice Act is being reintroduced in Congress THIS TUESDAY, the 24th. Read more now.

Nick Dupree
Nick's Crusade
http://www.nickscrusade.org/wordpress/

Don't Ask Me!

2009-03-23T12:26:00.008-05:00

We just had an enlightening conversation with Candice from Humana's Prescription Review Department. Apparently this is an annual service provided by Humana to assess how (and if) the client's prescriptions are working together.

What we learned today:

Keith is still in Stage 1 of the prescription plan, which means that he has not yet reached $2700 in Rx benefits for the year. Approximately 25% of rx costs come out-of-pocket. However, that limit is rapidly approaching and Keith should enter Stage 2 coverage by about June 1st.
Stage 2 is the dreaded "donut hole" with no prescription coverage at all. This would not be a problem if Keith had Medicare Part D insurance, which limits the client's out of pocket costs to $100/month. However, he didn't anticipate the healthcare issues.
Once you are through the donut hole, you enter Stage 3 (Catastrophic coverage) in which Humana covers 95% of the prescription cost, with the remaining 5% coming out of pocket.

We did not have to deal with this last year because Keith spent so much time in the hospital and billing is completely different.

Confused yet? Yeah, so are we. I honestly don't know how people with less capability (whether due to illness, confusion or stress) handle this. The system seems to be designed to deliberately confuse and frustrate the client. And the people assisting you seem to realize this as they immediately give you new department names, 800 numbers and other potentially helpful tidbits to solve your problems. The bottom line, however, is "don't ask me!".

Here are the Humana support numbers she gave us, please feel free to share with everyone:

Prescription Review Status: Clinical Pharmacy Review Team 800-555-2546
If your prescription status is declined: Humana Member Grievance & Appeal Department, 800-457-4708

Once you are in the 'donut hole', there are two recommended prescription assistance programs:

Patient Access Network, 866-316-7263
Free Medicine Foundation, 573-996-3333

We are still awaiting the 2nd round review of Keith's medroxyprogestrone prescription coverage. The doctor is sending another strong appeal for support and Candice noted that Keith's prior 10 years of usage should be a strong consideration in the board's decision. However, as always, the unspoken message was "don't ask me!"

Another Humana policy you should know about.

2009-03-22T00:13:00.003-05:00

On Tuesday March 10th my father was rushed to the Christus Spohn hospital in Corpus Christi.

In the short time that we were still hopeful that he could be stabilized, we hoped to have him moved to Austin where my sister & I could spend more time with him as he healed. The social worker at Christus Spohn worked that end of the information gathering and we had two great doctors here in Austin ready to be Dad's admitting doctor once the transfer was okayed.

The social worker did her best, but sadly informed us that Dad's Humana coverage was only regional, so even if we could physically bring him to Austin, none of his medical needs would be covered until April 1st since any requested changes go into effect at the first of the month.

In our case, dad never stabilized, and passed away in Corpus Christi on March 14th.

One of the many lessons we learned out of this tragic incident, is that you need to be sure that everyone you care about has PPO insurance so they can get medical support when and where they need it.

Taking it a bit further, I'd love to find the insurance company that would waive the timing requirement so that patients could be transferred to a hospice or other facility near their family when their time here on Earth is short.

Where is the 'human' in Humana?

2009-03-19T09:34:00.005-05:00

Well, Humana has denied Keith the meds he needs. Don't get me wrong, they want him to have medroxyprogesterone, they just don't want to pay for it. Which adds about $96/month to our healthcare costs. Which makes me wonder how Humana can change a prescription plan without notice? And what do the people do who can't muster up the extra $96+ per month?

Keith's doctor is going to challenge this with the old "the patient needs this medication to breathe" defense. We'll see if that works.

Terri Johnson -- A Place for Mom

2009-03-18T10:45:00.005-05:00

I received this email last Tuesday, the day that Dad was admitted to the ER at Christus Spohn Hospital in Corpus Christi. At that time we still had the hope we could move Dad up here to be closer to me and my sister. I spoke with the management of each of the places Terri Johnson recommended and was impressed with the kindness, warmth and genuine interest in making this next phase of Dad's life fun, safe and interesting. Unfortunately, we never had the opportunity to get Dad settled here in Austin.

Terri Johnson is a great asset to her company, A Place for Mom. She knows the market well and respected everything we shared about Dad's situation, including the budget! Her insight and compassion made a huge difference.

Although we were not able to utilize this information for Dad, I wanted to share it with all of you so that you might benefit in your own situation.

Ruth

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you for contacting A Place for Mom. As your Eldercare Advisor, I am here to answer questions and provide you with referrals and details on senior care options in your area. Again, there is no charge to you or your dad for our services.

As we discussed, I am sending you a short list of communities that should meet your dad’s needs. I can help you set up a schedule to tour, and please feel free to contact our partners listed below to learn more and arrange tours. The selected care providers may also call you to schedule a visit. After you tour, give me a call or I will contact you and we can discuss if they met your needs. If not, I can offer more options for you.

Please call or e-mail me anytime! I am always interested in knowing how your search is going and am ready to assist you in any way I can.

Highland Estates1500 North Lakeline DrCedar Park, TX 78613
Contact: Julie or Joe Rowlette Phone: 512-259-3318

Click here for directions to this community.

Parkwood Meadows310 Chisholm TrailRound Rock, TX 78681
Contact: Debbie or Don McCowan Phone: 512-255-0886

Click here for directions to this community.

Parsons House Austin1130 Camino La CostaAustin, TX 78752-3969
Contact: Michael McKee Phone: 512-454-0524

Click here for directions to this community.

A great resource to check out is A Place for Mom's Family, the first online community website set up specifically for the families of aging loved ones to talk about eldercare. Find or share tips on moving mom or dad, legal matters, financial aid for Veterans, Alzheimer's care, dementia and so much more. Join today!

I look forward to working with you! Please keep me in the loop on what you hear regarding your dad’s prognosis (I will keep my fingers crossed for him).

Warm regards,

Terri Johnson
Eldercare Advisor
(877) 386-8023
terrij@aplaceformom.com
www.aplaceformom.com

http://elder-care-community.aplaceformom.com
Join "A Place for Mom's Family" - The first online community website set up specifically for the families of aging loved ones to talk about eldercare. Find or share tips on moving mom or dad, legal matters, financial aid for Veterans, Alzheimer's care, dementia and so much more.

A Place for Mom, Inc. is a nationwide information service about eldercare options including nursing homes, assisted living facilities, adult family homes, independent living and home care agencies. Our role is to provide information and options that meet a loved one’s stated needs and preferences. A Place for Mom, Inc. has assisted over 450,000 families in finding care and housing for their loved ones since it began in 2000.

Facilities or agencies may be included in our service if they are appropriately licensed by the state in which they operate. If a participating facility informs A Place for Mom, Inc. that it has lost its license, for any reason, or if A Place for Mom, Inc. has received complaints of significant dissatisfaction by consumers which are documented and can be proved, the facility will be excluded from the A Place for Mom, Inc. information service. A Place for Mom, Inc. does not own or operate any of the facilities or agencies to which it refers.

In order to provide the information service to consumers at no charge, participating facilities or agencies pay a fee to A Place for Mom, Inc. Information about facilities or agencies is provided for each family based on the clinical, financial and geographic needs and preferences stated by the family or client. A Place for Mom does not endorse or recommend any facility or agency as we believe it is the consumer’s sole responsibility to select the appropriate care for a loved one or for oneself. The facilities which are provided are options to assist in finding the right care or housing. Families are encouraged to tour and ask questions of each provider to ensure they select the facility that best meets their needs. A list of questions to assist you in the selection process is available from A Place for Mom, Inc.

Just ask George...

2009-03-16T11:59:00.003-05:00

Just spent 30 minutes on the phone with Humana...only 10 minutes per department (apparently that's good?).

According to Humana customer service representative Randy, Keith is over the limit for the year (2009) for medroxyprogesterone, although they admitted that didn't make sense based on last year's needs. That confusion bumped us to the next department. Randy told us he'd fully apprise the rep in Pharmacy Customer Service of the situation so we didn't have to repeat the story. Well, he was sort of right.

While we didn't have to repeat the story, the Pharma Customer Service rep spent most of her time advising us that we should let Medicare know that they had Keith's birthdate wrong on his official paperwork. We assured her that we had done that multiple times and, after her 3rd admonition about it, I cut her off and said we needed to focus on the medication issue. She looked at the records and said, "oh, this is the wrong department, let me connect you to Pharmacy Clinic Customer Service...I'll call ahead so they understand the situation and you don't have to repeat the story."

I knew we must have gotten to some inner sanctum of customer service because the hold music was in the classical vein. George came on the line and smoothly told us that after looking at Keith's records, he had a solution underway. He faxed a request to Keith's doctor and advised us to tell the doctor to elaborate on the medical need for this prescription. Humana would then have an answer in 24-72 hours as to whether Keith could have this medication in the dose the doctor prescribed.

So, perhaps we have a victory in this skirmish. If so, I know that next time I go straight to George...lol.

Subscription does not equal Prescription

2009-03-15T13:19:00.006-05:00

I went to Walgreens today to pick up Keith's prescription for Medroxyprogesterone. This Rx is used as a mild, direct stimulant of the respiratory center, thereby improving Keith's breathing. His doctor has directed Keith to take 4 pills 3x/day for a total of 12 pills/day. Keith has been taking this medication for about 10 years and it works well in concert with the other meds he has been prescribed. After all, he's still breathing...lol.

Okay, back to the story. The pharmacy tech told me that the system was not allowing her to fill the prescription for any more than 60 pills...a 5-day supply based on the prescribing doctor's dosage. She got the pharmacist who also tried to override the system to no avail. She called Humana to find out why a standard medication refill was not being honored. She was told that Humana had determined that they would only pay for 2 pills a day, not the prescribed 12 pills/day per the doctor's orders. I was aghast. How does a insurance company with no medical knowledge of the patient arbitrarily change the prescription? I was told they said it was fine for Keith to take the 12 pills/day, but that he'd have to pay for them himself.

The pharmacist at Walgreens said this happens all day, every day. She has sent a fax to Keith's doctor to see if we can get this changed. Next step is contacting Humana Cares...we'll see if they do.

Walter Glendinning, 10.13.31 - 03.14.09

2009-03-14T09:04:00.002-05:00

My Dad, Walter Glendinning, passed peacefully at 4am in Corpus Christi from undiagnosed colon cancer. All of us (including Dad) just learned about the cancer on Wednesday so we are grateful that he went swiftly and without pain. He was very well cared for by the medical staff at Christus Spohn Hospital and we will be eternally grateful for the kindness they showed Dad, my sisters and me. I will keep you updated on any memorial service information, which will be in Rockport some time in April.

Dad was born in the tiny town of Hawick, Scotland and found his true home in the even tinier town of Rockport Texas about 20 years ago. Along the way he traveled the world and made many friends over his 77 years. He will be deeply missed by all who had the opportunity to know him and experience his positive energy. He was always ready with a good story, friendly smile, silly pun or joke, and a compassionate heart. He made friends literally to the day he died. There much more to say about Dad, but suffice it to say he had much love and laughter around him.

Thanks so much for all your good wishes and prayers.

Love,

Ruth

If there is a ground zero for both problems, it is Texas

2009-03-06T16:12:00.002-06:00

The Healthcare Crisis Hits Home
Karen Tumulty
TIME Magazine cover story

http://www.time.com/time/nation/article/0,8599,1883149-1,00.html

Here's an excerpt that caught my eye...

If there is a ground zero for both problems, it is Texas, where I grew up and where my parents and brothers still live. About 1 in 4 Texans is uninsured, the highest rate in the country. The vast majority of the uninsured — 8 in 10 — live in households in which someone works, typically for a small business. But only 37% of Texas companies with fewer than 50 employees offer medical coverage.

The state's Medicaid program is notoriously stingy. State law requires counties to provide care only to those deemed "indigent," defined as people who earn less than 21% of the federal poverty line, or $2,274 a year for a single adult and $4,630 for a family of four. Many counties, particularly rural ones, do no more than that minimum. So Texas — a state with relatively little regulation of the health-insurance industry — is fertile territory for insurance companies selling bare-bones coverage at low prices.

Read the whole article. It may be better where you are, but not by much. Forward this article to your political representatives. Demand better. You may not need it today, but without a doubt, you will need it soon.

Achieving a Better Life Experience Act of 2009 (ABLE Act of 2009)

2009-03-04T20:30:00.002-06:00

Proposed Bill Would Allow Tax-Free Trusts For Those With Disabilities
By Michelle Diament
March 3, 2009
(Updated: March 3, 2009 at 1:16 PM CT)

[http://www.disabilityscoop.com/2009/03/03/savings-accounts-bill/2412/]

A bill proposed in Congress would allow tax-free savings accounts for people with disabilities much like those already in existence for those saving for college.

The bill sponsored by Sen. Robert Casey, D-Penn., and Rep. Ander Crenshaw, R-Fla., would allow trusts to be created to pay for disability related expenses such as education, housing, health care and personal support services. The funds in the trust would not count against the individual’s maximum asset amounts to qualify for Medicaid and other government programs.

Called the Achieving a Better Life Experience Act of 2009 or the ABLE Act of 2009, the bill would create accounts similar to the 529 plans that currently exist to save for college. Up to $500,000 could be invested in the accounts, which would be tax-free in many cases.
“Too often persons with disabilities are caught in between the cracks in our society. The ABLE Act will provide families with a savings tool that is flexible and portable. The accounts are designed to help ease difficult financial situations and provide peace of mind to the families of individuals with disabilities,” Crenshaw said.

In order to become law, the bill would need to pass both the Senate and House and be signed by the president.

It seems appropriate that this demand for freedom is starting in Philadelphia...

2009-03-02T17:46:00.004-06:00

Give Disabled a Home Choice

Cassie James Holdsworth and Nancy Salandra are, respectively, director of policy and advocacy and director of independent-living services for Liberty Resources

The Community Choice Act has been languishing in Washington for 15 years, despite the considerable benefits - in both lifestyle and finances - it would yield for many Americans.

The act is a piece of federal legislation that would amend the Social Security Act to give disabled and elderly people access to support services at home instead of in institutions.

Under current Medicaid policy, disabled or elderly people who require assistance with daily activities are entitled to such services only if they reside in nursing homes.

The average annual cost of a nursing-home stay in Pennsylvania is more than $67,000, and 67 percent of nursing homes in the state are funded by Medicaid.

Why can't patients live in their communities with the same funds?

Advocates have long been asking Congress to allow people at risk of being admitted to nursing homes to have the option of staying in their own homes with Medicaid dollars. Not only do the vast majority of people prefer living at home; it's also cheaper. Often, two people can be served in the community for the price of putting one person in a nursing home.

Home care can also create more jobs. And it allows people to remain productive members of their communities.

So why hasn't this legislation been approved? The chief barrier is the influential nursing-home industry, which has been entrenched in American society for more than four decades.

It's time for America to think differently about long-term care, and the Community Choice Act is a critical first step. The legislation provides a socially and fiscally responsible alternative that will enable many people with infirmities or disabilities to maintain their independence.

With the high cost of health care and the prospect of increasing numbers of baby boomers needing such services, funding community-based services seems even more prudent.

The legislation is expected to be reintroduced this spring. All but four members of Pennsylvania's congressional delegation, including both of its U.S. senators, have signed on in the past.

Given that Pennsylvania ranks 13th among the states in nursing-home population and third in state spending on nursing homes, the commonwealth stands to reap extraordinary benefits from this legislation. It should be leading the charge. Where are our champions?

Liberty Resources Inc. is a nonprofit advocacy organization that promotes independent living for people with disabilities in the Philadelphia area.

Quick Update

2009-02-22T23:33:00.004-06:00

The lack of posts is not indicative of all problems being solved...lol.

Actually, we've been dealing with a host of new problems, the kind that no insurance covers. It's pretty normal to have attendants rotate out of our lives. Sometimes it comes in waves, this month was one of those times. Although I was a bit panicked to find out that both of our experienced attendants would be leaving at once, Keith was quite calm. He's been dealing with this his entire life. I had already taken over the afternoon shift (2-8p) so that we could stretch our budget a bit further. I could do any of the tasks needed to keep Keith safe & comfortable. Unfortunately I am not able to get Keith into his wheelchair myself so his movement to other parts of the house and beyond was severely limited. So, my working that shift was not ideal, but at least Keith & I got to spend more time together.

We placed an ad on Craig's List and were overwhelmed with the large number of responses. Some very high quality people were excited at the possibility of working with Keith, not only to strengthen their caregiving skills, but also to learn about life from his perspective. We were able to get two new attendants hired and trained by last week. The new shift is 9a-4p which eventually me to get out of the house & be more productive financially (and maybe even work out a few times a week.) Until the new attendants are completely comfortable in the work, I need to be here for support and direction. I will continue to cover the 4-8pm shift until we can get Keith enrolled in the Medicaid Buy-in plan and (hopefully) get some of the hours covered.

While all this is going on, the project I have been incubating since April 17, 2002 has a serious funding opportunity which will bring a great (and much needed) financial windfall to our lives. Naturally, it will require a lot of my time as well. This is something I've been preparing for since 2002 and I'm fortunate to have a husband who wants me to pursue this dream to its highest level. I know that there are folks out there who don't get me or understand what I do. To them, I can only say, watch!

We'll update this blog as we can. Big news will be shared...we promise!

Doublespeak 101

2009-01-08T09:33:00.008-06:00

At this time Keith has a hydraulic hand-powered lift which requires someone with the upper body strength to guide Keith into his wheelchair. It's really a two-person operation since one person has to move the ventilator and the other person needs to be sure that the single lever that locks the sling in place does not come loose. This has happened twice so far, quickly dropping Keith towards the floor and if a 2nd person hadn't been there, he would have had quite a jolt.

So, we were heartened to receive an email from Michelle that she'd investigated on her end and found that there was a possibility that Keith could qualify for a motorized lift. This is a key piece of equipment because it allows Keith to get out of bed and back into his life.

I contacted our insurance-approved durable goods provider and received this response:

Are you talking about a patient lift? If so (I am ccn'g our billing specialist to get more input as well) while they may authorize the electric lift, history has shown that when we submit our claim for payment they downgrade the claim payment to a manual patient lift, and pay us based on that code despite getting the auth for a power lift. It is rather frustrating, but the reasoning is, a power lift is a convenience item for the caregiver, and not for the patient, unless the patient is using it independently, in which case that point has to be proven, by the fact that no caregivers are on staff for the patient.

Next problem is, if they ever would pay us one time, which so far they haven't that I am aware of, the allowable for a power patient lift is very low. First Medicare will only pay for that item as a rental, they cap that rental at 13 months, so for $128.48, it would take us 13 months to capture $1,670.24, and that is if the secondary insurance kicked in otherwise it is only 80 % of that amount. As you know the power lifts cost as much as $2,500 and more. There is no way we can purchase a $2,500 lift and expect to get paid $1,670 after one year of billing, if they were to pay us at all, which again they would more than likely down code the item to a manual lift.

I am sorry to say, unless our billing specialist knows something I don't, I don't think we can help you with your request, unless you have some other type of funding source willing to pay for it, such as DARS.

We heard from the billing specialist today and she confirmed that nobody has been successful in this mission in the past and there is no expectation that anyone would be successful in the future.

The most frustrating thing about this is that this piece of equipment is vital to Keith's continued recovery. One of the symptoms of Spinal Muscular Atrophy is muscular wasting. Keith always had a very active life that slowed the muscular degeneration, but after 10 months of enforced bed rest, this thin line between maintaining and losing overall health has been irrevocably erased. Unlike people without SMA, Keith cannnot rebuild muscle strength. Add to this the stress of being forced to disconnect from the meaningful engagement with the world that Keith has had his entire life and you begin to understand the importance of this piece of equipment.

The motorized lift is not a "convenience to the caregiver". It is a vital tool that allows Keith to actively participate in his life. When he gets out of bed and into his wheelchair, he reclaims his independence and his whole perspective on his role in the world. The importance of this cannot be understated and we will continue to pursue every avenue to get what we need for Keith to reclaim his life.

The Curious Case of Keith Hogan

2009-01-05T20:52:00.005-06:00

Just a quick note to thank all of you for sending all that good energy Keith's way. In the last couple of days he's back to being the Keith we all know and love...and we couldn't be happier to have him back! We'll keep you updated with his progress...and you keep sending those healing thoughts!

Humana Cares...really!!!!

2009-01-02T11:50:00.002-06:00

We had a meeting with an amazing woman today named Michelle Sperry who is the Field Care Manager from Humana healthcare's new division, Humana Cares. The focus of this division is to be the bridge between Humana clients and Humana programs. In other words, she is who we needed from day one of this health adventure. Now that we are on day 289, we recognize the right person when we see her! She has given us renewed hope for putting together a sustainable life plan that allows both Keith and me to live our life to the fullest.

Humana Cares Rocks!

New Year's Update

2009-01-01T09:42:00.001-06:00

As some of you know, Keith has had some health issues over the last month. He had an appointment with Dr. Gilbey last week which went well. The doctor confirmed that all his vital signs and test results are in the normal range so he doesn't have any urgent concern about that. He did notice that Keith's concentration was diminished, his speech is less clear and that his general response to questions was slower than it has been before. I gave him a run down of the issues I've noted over the last few weeks including lack of appetite, speaking difficulties and swallowing issues. We did mention that there has been considerable stress which is now abating. He suggested that we observe the status of Keith's physical symptoms for the next 2-3 weeks and if they are still escalating, he would then check him into the hospital for a 24 hour observation period where they could do an MRI, xrays, speech/swallow assessment and any other in-depth tests appropriate to his symptoms.

We also discussed the possibility that Keith's body is weakening due to SMA and the fact that he's been bed-bound for the last 10 months. The doctor also said that there is a greater chance that Keith will have to remain on the ventilator permanently. As Dr. Gilbey noted, Keith really has no physical reserves so he may have to come to terms with needing that support for the long term. We fully expect Keith to live for a long time to come, however it may be without some of the freedom he is used to.

Despite Keith's health setback, we are still excited about the new year and all its positive potential on every level. As always, we are deeply appreciative of your continued love, support and prayers.

Here's to a happy, healthy and prosperous new year for us all!

Love,

Ruth, Keith & Henry Hopper

A growing light...

2008-12-14T12:43:00.002-06:00

...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!

2008-12-09T11:09:00.007-06:00

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!

2008-12-03T19:05:00.006-06:00

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?

2008-11-12T12:45:00.008-06:00

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:

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.
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.
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.
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!

2008-11-07T21:13:00.005-06:00

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

2008-11-03T20:28:00.003-06:00

This was on 60 Minutes last night. Beyond cool.

Watch CBS Videos Online

24-hour Poll Dance

2008-11-01T19:26:00.005-05:00

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

2008-10-31T15:36:00.001-05:00

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

2008-10-28T23:42:00.007-05:00

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

2008-10-27T21:07:00.002-05:00

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.

2008-10-06T23:38:00.002-05:00

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"

2008-09-30T19:47:00.004-05:00

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

2008-09-30T00:15:00.002-05:00

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

2008-09-23T21:08:00.005-05:00

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

2008-09-20T17:39:00.007-05:00

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

2008-09-17T19:15:00.002-05:00

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

2008-09-16T22:00:00.000-05:00

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

2008-09-16T08:59:00.006-05:00

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

2008-09-14T10:01:00.006-05:00

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

2008-09-08T12:32:00.004-05:00

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)

2008-09-08T11:33:00.006-05:00

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:

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

65 years of age or older
Disability
Confinement in jail (!)
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

2008-09-07T18:17:00.010-05:00

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

2008-09-05T11:06:00.004-05:00

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

2008-09-04T09:23:00.003-05:00

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!

2008-09-04T00:28:00.003-05:00

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

2008-09-03T13:21:00.006-05:00

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

2008-09-02T22:35:00.004-05:00

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

2008-09-02T11:47:00.005-05:00

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)

2008-09-01T20:20:00.008-05:00

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

2008-08-28T09:33:00.010-05:00

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

2008-08-25T21:32:00.007-05:00

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

2008-08-25T16:42:00.003-05:00

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

Don't 'dis' my ability!

2008-08-17T10:06:00.004-05:00

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!

Where's Your Wheelchair?

2008-08-16T08:45:00.009-05:00

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.

The Story Begins...

2008-08-15T23:39:00.006-05:00

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.