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!

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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).

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.

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

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.

Choices?

Last week we met with the social worker/consultant and a lawyer to discuss the possible solutions for managing the costs of meeting Keith's healthcare needs going forward. Today we got the news in black and white. Even with all the positive elements in our favor, the long-term outlook is grim to say the least.

Here's the breakdown of "choices" available to us:

1. In order to shorten the time necessary to qualify to be evaluated for eligibility in the Community Based Alternatives program, Keith enters a hursing home/institution for a minimum of 4 months (more likely 6 months). Given the near-death experiences and deterioriation of health he experienced in the last rehabilitation center, this is not an acceptable option.
2. Apply for the Community Care for Aged and Disabled program. To do this, Keith is required to reduce countable assets to $6000. This is accomplished by either moving existing assets to a trust administered by a parent or transferring to another trusted individual. If the trust is created, it must have a "Medicaid payback" provision which means that once Keith passes away, all monies received from the government must be paid back from the trust. The purpose of the trust is that Keith would not have personal access to the funds.
3. The real kicker is that to qualify for any support at all, Keith and I can have a combined gross income no greater than $4044/month. If we exceed that number, then all support is stopped and have to wait 6 months to reapply for support.
4. Oh, and we could always get divorced. Apparently the institutions that actively encourage you to get married, use that against you when it comes to seeking support.

In truth, none of these choices are palatable. No matter which way you look at it, we only get the minimal support offered by public entities if we agree to impoverish ourselves and give up any control over our lives. Not only is Keith put in double jeopardy by compounding his physical disability with financial constraints, but I, as his wife, am equally bound by these limits. By these standards, we are both discouraged from being productive. Hard work and the commensurate financial rewards are punished by the system which is counter-productive at the very least.

Ultimately, I think our best bet is to shake ourselves free of the financial shackles that are offered by the governmental monies. By virtue of our creativity, age, networking skills, and ability to communicate our story, we are uniquely positioned to develop a financially successful alternative to the "choices". Naturally, we'll share the solution with the world!

Critical Mass

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.

The Dead Zone

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.

Just press SEND

As Keith and I attempted to wend our way through the byzantine healthcare system, it rapidly became apparent to us that we were going to need an expert to help us sort through the information and determine whether any of it was good news.

For example, in early July we were told that a representative from the Texas Department of Aging and Disability Services (DADS) would be contacting us in a few weeks to arrange a time to assess Keith's eligibility for their services. We were happily surprised that she actually showed up a few days later, thereby speeding the process. Within 10 minutes of her arrival, it became clear that we were not going to benefit from the standard DADS program because of the stringent requirements of financial need for married couples: $2800/month gross income and no more than $3000 in assets (aside from your home or automobiles). We were disappointed, but not surprised. The DADS agent was very nice and genuinely wanted to help us find a solution. She then told us about the Community Based Alternative program which basically allows you to have the services of an institutional health facility at your own home. We were excited about this option until we learned that there is a 3-5 year waiting period!

Naturally, there's a loophole (apparently there is at least one loophole for every law passed in Texas). You can skip to the head of the line if you are in a facility for 30+ days and get an assessment immediately. Here's the secret password that should be your first words on Day 31: "CBA Bypass". Once those magic words are spoken, you are whisked to the top of the list and an agent conducts a home visit, arrangements are made and, voila, you have the benefits of state support in the comfort of your own home.

Only one problem. It doesn't work that way.

The truth is that you still need to qualify financially for Medicaid. The other more soul-shattering truth is that you have to stay in the nursing home about 6 months before you are considered for the CBA program. Those are two HUGE things to leave out of the conversation.

Both of those truths underscore the unarticulated public policy of impoverishing and marginalizing people with disabilities. To deny access to all the things that make life worth living so that a person might receive moderate support from an uncaring authority is patently un-American. There is no life, no liberty and no pursuit of happiness. We provide more support to visitors to our shores than natural-born productive citizens whose only limitations are physical.

This is a shameful situation and those of us who have the good fortune of physical wholeness have a responsibility to share those abilities to make a difference. I'm not talking about ditching your life and taking on the burdens of others. It's much easier than that. Simply share these stories with others, particularly politicians, social messengers and other market makers. In order to change the world it only takes three steps: copy, paste and just press SEND.