Friday, December 18, 2009

Ambit Energy

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!


Tuesday, December 8, 2009

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

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.

Monday, November 30, 2009

Your Thoughts Are Cordially Invited…

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

Tuesday, November 24, 2009

From Abled to Labeled

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

Into the Impossible...

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

Saturday, November 21, 2009

There's always something....

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.

Monday, October 5, 2009

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

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.

Friday, October 2, 2009

The Cost of Failure to Enact Health Reform

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.

Sunday, September 6, 2009

Physical Disability v. Fiscal Disability

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).

Monday, August 10, 2009

A Letter from Rep Lloyd Doggett [D-TX]

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.

Lloyd Doggett

Friday, July 24, 2009

There's been a little complication with my complication

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:
  1. 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
  2. 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

Tuesday, July 7, 2009

Medicare Improvements for Patients and Providers Act of 2008

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.

Wednesday, July 1, 2009

Intellectual Oxygen!

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!

Saturday, June 6, 2009

The far.

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!

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.

Friday, June 5, 2009

Oxygen deprivation

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!


Thursday, June 4, 2009

Thank you for shopping at Mayo...

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."

Monday, May 4, 2009

Health Care in Rural America

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.



From: U.S. Dept. of Health & Human Services <>
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

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  

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.


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.

Wednesday, April 1, 2009

Coalition to Advance Healthcare Reform (CAHR)

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.

Tuesday, March 31, 2009

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

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.

Monday, March 30, 2009

The Cost of Inaction

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.

Saturday, March 28, 2009

We're going for 10,000!

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!

Tuesday, March 24, 2009

Measure Offers Choice And Independence For People With Disabilties

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!!!

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

Monday, March 23, 2009

Don't Ask Me!

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:

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!"

Sunday, March 22, 2009

Another Humana policy you should know about.

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.

Thursday, March 19, 2009

Where is the 'human' in Humana?

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.

Wednesday, March 18, 2009

Terri Johnson -- A Place for Mom

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.



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
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.