I wish Congress would have put protecting the most disabled Americans ahead of uninsured able-bodied people, but they didn’t. For Congress, people like me are invisible.

The states slashing Medicaid the deepest (the Southern states) are the ones that will see the most new Medicaid eligibles thanks to “Health Care Reform.”

PERFECT
FISCAL
STORM

That means life for people with disabilities in the South is about to get even worse. Good thing I fled Alabama.

Medicaid, especially in the South, is increasingly in tatters. State Medicaid programs were slashed to the bone in the 90s thanks to “the Republican Revolution” and now there’s no fat left to trim, so they’re taking chainsaws to muscle and bone.

In the Wall Street Journal, it discusses a woman who’s had to sit in her own waste all day thanks to state budget cuts. I suppose the state hoped her bed sores and inevitable sepsis take her quickly, otherwise Medicaid will be on the hook for expensive hospital stays that would dwarf the cost of just leaving her f#$%ing home care uncut in the first place. I’ve seen this happen over and over again to people I fight for. It’s left me scarred to depths few of you could ever understand.

Here’s the Wall Street Journal piece, by Clare Ansberry.

FLORENCE, S.C—Tandem forces of shrinking state budgets and rising health-care costs have collided and struck a small brick ranch house in this rural town, home to Barbara Hickey.

Born with cerebral palsy, Ms. Hickey, now 67 years old, is confined to a motorized wheelchair. She lives alone and relies on certified nurse’s assistants to get her in and out of bed, bathed, clothed and fed.

In December, she received a letter from the South Carolina Department of Special Needs and Disabilities, saying her weekly 50 hours of personal-care help was being cut to 28 hours. That meant Ms. Hickey would get help for two hours in the morning and two hours at night. If she needed to use the bathroom in between, she would sit in a soiled diaper.

After several days of reduced care, the local office of the South Carolina Legal Services appealed the cuts on behalf of Ms. Hickey. Her hours have been restored pending the appeal.

Home health care—funded largely by Medicaid—generally costs less money than institutionalizing developmentally disabled people like Ms. Hickey. But the political reality is that it’s easier to cut back home services than to close a 24-hour facility, which can leave people with nowhere to go. Thus, some of the biggest cuts around the country are happening in the basic services that help the disabled cope at home.

South Carolina says it has little choice but to cut funding for Medicaid. It faced a $563 million deficit for the current fiscal year, and like other states must have a balanced budget. Medicaid, the joint federal-state health-insurance program for the poor and disabled, already consumes about 20% of its $5 billion budget and is one of its fastest growing costs.

The health-care program is on course to consume 40% of the budget of South Carolina in five years, and leaves little for anything else, says Gov. Mark Sanford. “It could force legislators to either cut further into bone in the areas of education, law enforcement and economic development, or raise taxes. Neither option is palatable.”

The state already is making painful cuts elsewhere. The state’s Department of Juvenile Justice has closed five group homes and cut 25 after-school programs. There are 1,000 fewer public-education teachers this school year than last.

Across the country, budget-strapped states are focusing on Medicaid. Created in 1965, it is now a $379 billion program, including state and federal funds. State spending grew an average 7.9% in fiscal 2009 as the economic crisis hit and more people signed up for Medicaid.

It was the highest growth rate since the last downturn six years ago. Spending is expected to keep growing at that pace for the next decade because of rising costs and growing enrollment.

But states don’t have much flexibility when it comes to what they can and can’t cut inside Medicaid. Although it is a state-managed system, the federal government pays a percentage of each state’s total costs and makes many of the Medicaid rules. Under federal Medicaid law, states must offer inpatient and outpatient hospital care, X-rays and lab services. They also have to cover nursing-home services and meet certain standards, such as staffing ratios.

There are further constraints this year. States can’t reduce Medicaid eligibility this year because of a condition attached to federal stimulus money, and under health-care reform, they can’t eliminate existing programs.

States also run up against other laws when they make deep cuts. Lawsuits have been filed in South Carolina, Florida, Connecticut, Virginia, Mississippi and New York, claiming Medicaid cuts make it impossible for those with disabilities to live at home and that it violates the Americans with Disabilities Act.
(I know the lawyers behind this class action. I say RIGHT ON!!!!)

Logically, states would cut the most expensive, least efficient services and keep the most cost-effective. But because of mandates and the need to save money quickly, that isn’t as easy as it sounds.

For example, home care—because relatives often provide some of the care—is generally cheaper than housing people with developmental disabilities in institutional facilities. In 1993, the average Medicaid cost for each person with disabilities was $48,500. At the end of 2008, the latest figures available, it cost an average $55,000. Adjusted for inflation, that actually represents a 23% decrease, largely as a result of more services being shifted away from costly institutions to the home, says Charlie Lakin, director of a University of Minnesota program that tracks services for the developmentally disabled.

But many in-home services, though critical to those receiving them, are optional. Furthermore, there aren’t many minimum standards set for in-home services, so it’s easier to cut them without violating funding requirements. There are fewer immediate consequences for the state when it cuts those services because families won’t generally abandon disabled relatives and leave states on the hook for housing.

Cutting home care could ultimately prove penny-wise and pound-foolish, however. It could push more people into institutions or large group homes because that is where services are guaranteed, even though institutional care is more expensive.

…

The department’s fiscal problems have been exacerbated by past spending decisions. A special state audit released in December 2008 showed that the department hadn’t provided many new services for which it had received funding and, as a result, it couldn’t recoup millions in federal matching Medicaid dollars. For example, the state spent less than $700,000 of $10 million allocated to serve autistic children, which resulted in the loss of $13.6 million in federal matching money. The state said it couldn’t ramp up the program fast enough because it couldn’t find qualified service providers. After the audit, the executive director of the department and four of the department’s seven commissioners resigned. The department has since implemented most of the recommendations made by the Legislative Audit Council.
(This same thing nearly happened with the NHTD –Nursing Home Transition & Diversion– waiver here in New York: the bureaucracy imposed on providers was SO ridiculous than very few participated, and the rules were so cumbersome for patients that, in the program’s first two years, only one patient downstate–me–transitioned home from a facility!)

Recent state cuts have targeted developmentally disabled people living at home. In December, families were told that some of their in-home support was being cut by as much as half.

Brian Phillips, a 37-year-old with cerebral palsy, was told that he was losing half of his personal-care hours. He can work a TV with a remote control but can’t dress or feed himself, or get in and out of his bed or wheelchair.

He lives alone with his father, James, 70. The elder Mr. Phillips, who has had open heart surgery and whose heart functions at only 26% of its capacity, cannot lift Brian on his own. He appealed the cuts and the hours were restored pending his appeal.

“These are cuts no one wants to make. They are very difficult for agencies to implement and they are very upsetting and very, very difficult for our families,” says Lois Park Mole, spokesperson for the state Department of Disabilities and Special Needs.

People will generally do what they must to keep their disabled family member at home regardless of the cuts. At some point, however, even the most dedicated may not be able to continue, especially as their own health deteriorates.

…

In Aiken County, Board of Disabilities Executive Director Ralph Courtney says waiting lists for services are growing. There are more than 5,000 on waiting lists for various services, from residential programs to in-home programs.

“We want to give families hope to keep their family unit together, but in reality there is very little we can put in place to assist them,” says Mr. Courtney.

In-home support is cheaper, he says, than the alternative: group homes and larger residential programs that need to be maintained and staffed 24 hours a day. “But you can’t put people out on the street,” he says. “You can cut in-home support.”

Even though Ms. Hickey lives alone and needs help with nearly every aspect of daily living, it cost less to have her live in a house with 50 hours of personal care help than in a nursing home. Institutional care in South Carolina costs about $100,000 per person a year, compared to $39,000 for home and community services, according to the University of Minnesota research.

Read the entire article here: Disabled Face Hard Choices as States Slash Medicaid

How does littering the entire country with families destroyed by Medicaid cuts, jive with HEALTH CARE REFORM?

Honestly, I have gotten so many hate messages over the years, I’m now convinced that the Americans will continue to react with cold indifference, or, worse, celebration–”good riddance! No one is gonna force me to pay for you useless leeches!”–as Medicaid policy continues to cull out people with disabilities like me, UNABATED.

And you wonder why I’m so angry that I’d consider reconstructing the U.S. entirely? It’s because my every day experience involves the above Kafkaesque Medicaid policies harming me or the people I care about!

Nick

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They aren’t going well. I followed the health care reform debate with a magnifying glass throughout, and came away deeply disgusted in both the final product and the process that made that sausage.

We desperately needed SERIOUS reform to the United States’ health care non-”system”; we’re in the richest country on Earth, but among OECD nations, our health care is at the back of the pack. No country with our level of wealth has our level of dysfunction in basic health care.

Instead of “the change we need,” what we got when Congress was done kowtowing to big insurance donors and passed the damn thing, was incremental change to half the health care industry (the private insurance market) while leaving the half the government actually runs, Medicaid and Medicare, nearly untouched. The goal of the Obama reforms is to give more Americans access to the health insurance market, more people buying insurance, with subsidies to help the poor afford private insurance. The health insurance industry stands to rake in BILLIONS! I was devastated with disappointment.

Meanwhile, the frenzy on the right wing about this bill (which was nearly a straight copy and paste of the 1993 Republican health care bill (full text of that bill, see for yourself) taking us to “socialism” are patently absurd! I’m like “really? The first thing communists do when they take over a country is enact tepid, insurer-friendly reforms that set up a free market exchange so more people can buy insurance plans? Seriously?” A volcano of right-wing rage exploded, including dozens of death threats and some vandalism across the country. How can anyone take the Tea Partiers and Glenn Beck seriously that health care reform is anything but weak-kneed incrementalism?

The Tea Party is more disconnected from reality than any political movement I’ve ever seen, and yet, they seem to be the only major grassroots force out there and their impact is unavoidable. They’re protesting more private insurance as socialism, railing against the lowest income taxes since the 1920s as communist tyranny (simultaneously, the largely graying group opposes changes in entitlements–”get the government out of my Medicare”) and now that they’re doing the one thing that Republican politicians really care about, picking off incumbents, you’re going to see the GOP tilt even more toward the radical fringe (a terrifying prospect).

Real sign, real Tea Partiers. Medicare is a government-run program.

Since the Tea Party guys’ claims have little relationship to reality, and none of them took to the streets when George W. Bush took us from record surpluses to record deficits, centralized power and forever gutted the Bill of Rights in the name of the War on Terra, the Tea Party has to be about something else. You never see the huge, angry backlash and anti-government “patriots” in funny hats and militia terrorists like McVeigh come out of the woodwork when THEIR party is in power! I’m guessing the root of the dispute here is the right-wing’s belief that government shouldn’t have the right to interfere in the market AT ALL, and add in some good ol’ American racial panic when the multicultural Democratic party took over from the virtually whites-only Republicans. Expect another McVeigh-style attack before Obama leaves office (there have already been several shooting rampages, including one targeting religious liberals at a Unitarian church, one targeting policemen for “gonna take our guns,” and one by a long-time rightist fringer targeting Jews at the National Holocaust Museum in DC).

All that furor against the health care reform bill, while, of course, from the disability rights perspective, Obama’s reforms don’t go nearly far enough, because they only make meaningful changes in private insurance, not Medicaid and Medicare, which most of us with disabilities rely on for our care.

Medicaid and Medicare are BADLY broken and rapidly going bankrupt, but aside from expanding eligibility so that more people will be crowding already scant Medicaid resources, nearly NO changes are being made there. The home care reforms I’ve devoted a decade to are not in the bill; America’s long-term care programs remain frozen in 1965, with government continually making expensive, antiquated segregation in nursing homes THE ONLY OPTION for the disabled, including children and young adults. The horribly dysfunctional patchwork of Medicaid waivers that I rail against? Despite years of demands for change from many quarters, including the National Governors Association, those injustices will remain firmly intact, untouched by “comprehensive health care reform.” People like me will continue struggling to wring bad care from what’s left of Medicare and Medicaid; our lot will not improve at all after “Health Care Reform” takes effect. I am fighting this battle every day, and the problems with hospitals closing due to inadequate payments from Medicaid, not being able to find doctors who still take Medicaid patients, and more, just continue to escalate for me.
Meanwhile, the insular Washington leadership is curiously detached and unaware of what’s happening to their own Medicaid and Medicare programs right under their noses. President Obama made me sick when, during the health care reform “summit,” Congressman Peter Roskam (R – Illinois’ 6th district) asked him, “how can we expand Medicaid when in some counties, NO doctors that take Medicaid are left standing?” and the gist of Obama’s response was “my word, what is this that you speak of my good fellow? if this is so, we can look at raising reimbursement rates!” Everyone knows that they’ll never hike Medicaid funding, and that’s why so many in Congress sought special provisions in the bill (e.g. “The Cornhusker Kickback”) for the feds to cover their states’ new unfunded mandates to expand eligibility to millions of additional people. These expansions are not going to go well, particularly in poorer states, especially since the “kickbacks” to soften the fiscal blow were all removed from the bill with reconciliation.

The failure to even attempt changing the glaring problems with Medicaid and Medicare has left me more jaded and frustrated than ever, to the point [b]I can no longer call myself a Democrat[/b]. Especially since I know that Congress exhausted itself scraping through this tinkering with private insurance, and most likely won’t have the political will or sense of urgency to revisit health care issues for another 10, 20 years. I hate being stuck with our dysfunctional Medicaid system but that’s what people with disabilities are, stuck.

While some pundits hailed the passage of health care as a colossal foreign policy victory, proving America can tackle huge issues, marking our “comeback” as problem-solver on the world stage, I see the opposite. I see a government that lacks the dynamic, bold decision-making capability that these ultra-competitive times demand, a Congress that always cops out or kicks the can down the road in the face of huge problems. I see an America so paralyzed by corruption and red tape that we’ll never catch up with competitors (people in India have already stuck a fork in the U.S., considering the Chinese their only real rival for economic dominance at this point).
Referring to China, I’ve often heard President Obama use the rallying cry, “why can’t we be the world leader in technology again?! Why can’t we have the fastest trains in the world?” Well Mr. President, I would answer him, we will never build trains and train tracks faster than China, because we have so much “environmental impact study” and “archeological impact study” red tape, followed by years of hearing lawsuits from anyone who doesn’t like the project, that it takes an average of 10 years to get any major transportation project off the ground, much less completed. China, meanwhile, simply makes a decision on future train projects, then enforces it by any means necessary. How can we compete with that given our bureaucracy?

While those panicked about executive power right now can take a sigh of relief, because presently it seems Obama can’t even take a $#!T without 60 votes from the Senate, I worry that, before long, fierce foreign competition, falling standards of living, plus a completely paralyzed Congress will lead the American people to demand a dictatorship. Another sudden economic crash, or, G-d forbid, successful terrorist attacks (by Islamist nutbags or another McVeigh) and I fear that the Republic will gasp its last gasp.

The only real solutions are solutions as big as the problems, pushed through by reform groups that aren’t just as dysfunctional as the institutions they’re fighting.

Big Solution #1: Ban campaign contributions (bribing) to public officials, as this has limited access to the halls of power ONLY to moneyed interests, as well as fostering a culture where those who spend more time working for the people than working on fundraising are immediately replaced by candidates with backing from deep-pockets, leaving only self-interested scoundrels remaining. Free speech must be immutable, overturn all McCain-Feingold restrictions on when and where and how candidates can advertise and get their message out, independent expenditures by corporations, unions, advocacy groups and private citizens are unfettered, you can say whatever you want, whenever you want with your free speech, because that’s what the 1st Amendment guarantees–you’re just not allowed to bribe public officials with campaign contributions and rig the system. Campaigns will be publicly financed like in Canada, the UK, and most of Europe. Speech is speech. MONEY IS NOT SPEECH!

Big Solution #2: Breaking the Duopoly is crucial, but WILL NOT happen without a change in the Constitution to allow Proportional Representation via STV (“Instant Runoff Voting,” AKA Single Transferable Vote, as is done in Australia, New Zealand, Republic of Ireland) to bring more parties into Congress. Allowing more parties will enable more principled views to be expressed (because, for example, if you want less intrusive government and less taxation, you won’t have to vote Republican for the tax cuts and get warrantless surveillance, anti-gay crap and anti-immigration laws too as part of the package, instead, you can vote for a party that closely matches your views). More parties also mean regional parties representing genuine regional people’s interests get into the mix. And parties would have to work together to coalesce into viable majority coalitions, and would have to curb the extremist nonsense to keep their coalitions together. Overall, Proportional Representation allows for a much, much healthier democracy, whereas currently we have the opposite of healthy democracy, the Duopoly nearly always wins 100% control of the House and Senate with the support of as little as 20-25% of eligible voters, at the cost of all other parties and their viewpoints.

Big Solution #3: This is my most radical view, but failing Solution #2, maybe we could be far more functional as a people and be much better represented, plus have no more imperialist ventures sapping our wealth, if we were to make a new version of the old Articles of Confederation for the new Information Age that separates the country into 6 or so federated regional powers (see: superstates) to avert any FURTHER deadlock, dysfunction, or civil war (each new state under parts of the current Constitution they elect to have, but empowered to each craft very different rules, based on their shared culture, for how society should work). I’m talking about ending the United States as we know it, replacing it with a federation of nearly autonomous federated republics named “the United Federation of America” (UFA! UFA! UFA!) Each federated republic would choose their own military spending and so on. Think of The Federation (United Federation of Planets) in Star Trek! That’s the type of idea I’m batting around here.

Click to enlarge the map!! In this vision of the future, South Carolina even secedes from the Southern Republic, because, hey, they've wanted to secede since birth.

I’m going even farther than “states’ rights.” I’m altering how the country operates–root and stem overhaul–by almost completely eliminating federal centralization as we know it. Why go this far? Because the paralysis of government has become so bad over the past 30 years that we have to consider crazy, radical ideas we would have shunned in disgust before.
Southern culture should never block Northeasterners’ ambitions for reform in New York where I live now, and visa versa. I moved to NY in large part to escape Alabama’s far-right public policy that was blocking my advancement, but while it’s better here, those policies (tax cuts causing huge deficits, social service cuts, the corporatist approach that keeps the institutional bias in Medicaid alive) FOLLOWED ME to New York because they’re federal policies too. And I believe the policies that affect me would be very different if only a Northeastern bloc could decide their own policies, vs. a national consensus accommodating Southern, Western, everyone’s views being forced on the Northeastern states. National compromises should no more be forced on the Northeastern states than on the Southern states (with some exceptions: states can’t disregard the certain parts of the current Constitution, like reinstating slavery or segregation).

This won’t happen any time soon (there is no public support for it) but maybe we’d all be better off if it did…

I just know that the only real solutions here are solutions as big as the problems. Without trying at least one of these big solutions, get ready to shout “HAIL CAESAR” and go full Banana Republic, while China becomes undisputed world hegemon.

Nick

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Insurance company bureaucracy is even worse, but federal programs have to be significantly better in the future for there to be meaningful competition. Right now, the government health care system is still far too fail. Medicaid is deeply corrupt, admitting people to nursing homes because institution owners and their lobbyists line the pockets of state legislators; people are even stripped of home care just for turning 21, and forced into institutions. As far as Medicare goes, its fee schedule encourages procedures over responsible diagnosis and management, causing the death of primary care and creating a costly and disastrous situation for patients. An old man will have no problem finding a cardiologist to do an angioplasty, but may find it near-impossible to find a primary care specialist who can manage him with meds instead.  A crude example, but it speaks to how costs can explode when so few primary care docs are around and it’s mostly proceduralists who have survived the extinction. Most new doctors the past few decades have stayed away from family practice because Medicare’s the AMA’s drastic undervaluing of the E&M (evaluation and management) reimbursement codes make it difficult to survive financially as primary care physicians. You get what you pay for, and Medicare (and the private insurance industry that follows Medicare’s lead) pays for procedures, procedures, procedures, NOT talking to patients and thinking about what’s best for us. According to Medicare, taking a detailed history from a patient is worth nothing more than something like the first 27 seconds of a proctoscopy; I rarely see doctors taking detailed histories anymore, outside of residents in university hospitals who are ordered to do so. Do plenty of docs have to do more and more procedures just to stay afloat and keep their doors open? YES!!

Aside from a fee schedule that has buried primary care and incentivized unnecessary procedures, Medicare has also become such an unwieldy bureaucracy that even the most basic functions are drowning in red tape.

Read this personal experience from primary care specialist Dr. Toni Brayer:

Dear President Obama,
I am in favor of Health Care Reform and I agree with you that universal coverage and eliminating the abuses that both patients and doctors have suffered at the whim of the for-profit insurance industry must be curtailed.

But I also want you to fix Medicare. Medicare is so bureaucratic that expanding it in its current form would be the death knell for primary care physicians and many community hospitals. The arcane methods of reimbursement, the ever expanding diagnosis codes, the excessive documentation rules and the poor payment to “cognitive, diagnosing, talking” physicians makes the idea of expansion untenable.

May I give you one small example, Mr. President? I moved my medical office in April. Six weeks before the move I notified Medicare of my pending change of address and filled out 22 pages of forms. Yes, Mr. Commander in Chief…22 pages for a change of address. It is now mid-August and I still do not have the “approval” for my address change.

I continue to care for my Medicare patients and they are a handful. Older folks have quite a number of medical issues, you see, and sometimes it takes 1/2 hour just to go over their medications and try to understand how their condition has changed. That is before I even begin to examine them and explain tests, treatment and coordinate their care. Despite the fact that I care for these patients, according the Medicare rules, I cannot submit a bill to Medicare because they have not approved my change of office address.

I have spent countless hours on the phone with Medicare and have sent additional documentation that they requested. I send the forms and information “overnight, registered” because a documented trail is needed to avoid having to start over at the beginning again and again. I was even required to send a signature from my “bank officer” and a utility bill from the office. Mr President, I don’t have a close relationship with a bank officer so this required a bank visit and took time away from caring for patients…but I certainly did comply.

I am still waiting to hear from Medicare. At my last call they said they had not received yet another document, but when I gave them the post office tracking number, they said it was received after all. They could not tell me when or if they will accept my address change.

I have bills stacking up since April and I just found out that they will not accept them if they are over 30 days old. I have cared for patients for 5 months and will not receive any reimbursement from Medicare. The rules state I cannot bill the patient or their supplemental Medicare insurance either.

Believe me, Mr. President, I commend you for taking on such a huge task. Please also know that Medicare reform is needed along with health care reform.

A loyal American,
Internal Medicine (aka: primary care) physician

Source: EverythingHealth: Fix Medicare

It seems like the government doesn’t want doctors participating in Medicare, and makes the reimbursements so low and the hassles so high (they can’t even manage a simple change of address without a half-year bureaucratic nightmare) that more and more providers just give up. Yes, this is yet another case of the government’s unfortunate cranial-rectal inversion.

Dr. IcedLatte lists more aspects of modern medicine that desperately need to change here.

The Tower of Babel

Nick

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The recent addition of the U.S. as a signatory to the UN Convention on the Rights of People with Disabilities (CRPD) has been much ballyhooed. Any idea if/when Article 19 of the CRPD Treaty will be enforced? That’s the article that guarantees me community choice, the freedom to live in my community, without fear of being segregated in a nursing home because the government will only provide care in institutions. You know, the right to “the most integrated setting” that TEN YEARS AGO the Supreme Court ruled we’re entitled to under the ADA?! This is particularly bitter for me because I am currently STUCK IN AN INSTITUTION.
Why agree to Article 19 when we are not following it?! The feds continue to look the other way while poorer states cut off community services for the severely disabled just because they’ve turned 21, and leave them no choices but death and/or an institution. I had to fight that policy years ago in Alabama, and won, but apparently this despicable practice is still going strong in Illinois, as I recently read on VentWorld:

My son turns 21 at the end of August and will lose his current funding source. There are no adult waivers or funding that would provide him with the same level of support he has now. Trying to get info to prove that he would NOT be safe in a skilled nursing facility or nursing home. I found a web site where I can look up the name of a home to find out their staffing levels, ratios, violations, etc. but I have to know the name of the homes first. When I do search for homes the results are not specific to ones that can handle complex ventilator care. The state of Illinois wants the cheapest plan for my son which means without proper documentation they will only provide him with minimal funding for nursing care in our home. He currently has 114 hours per week and 336 respite care hours per year. The state is saying the adult program only allows for about 30-40 hours per week – more if we use non-skilled people. The state wants to find the cheapest way to care for him and if that is a nursing home then I must have proof that the staffing ratios will not be adequate for him. Plus there are no facilities anywhere close to where we live so he would have to leave his community, his friends, his family, his job, etc. He is very social, wants to continue living at home and just because he has a birthday his life is being turned upside down. If you know of facilities that take patients 21 years of age or older with complex ventilator care and what level of staff and their ratios please respond. Thank you.

I’ve been fuming furious ever since I found this post a few days ago; despite all my years of work on the 21 “aging out” policies, despite the fact that I brought national attention to the problem and forced the HHS secretary to notice, the government (state AND federal) are still allowing this unintended consequence of the EPSDT program to put even ventilator-dependent people and their families in a horrible, untenable positions where their lives will be torn apart at best, and lost to nursing home neglect at worst. For adults, it’s incredibly difficult to remain at home if you have a severe disability. As Dr. Ford Vox wrote in a recent piece in Salon: “…if your electric wheelchair breaks down or needs a new battery, we’ll have no problem moving you into a nursing home. You’d prefer a new battery so you can continue living at home? You picked the wrong state. As a poor Missourian, you’ll have no more than 30 days for your rehabilitation. Not quite ready to go home? Need a few more days of intensive therapy? Again, you picked the wrong state. Missouri Medicaid wants to admit you to a nursing home so much that it also doesn’t allow for outpatient physical therapy services or in-home therapies, taking another essential tool out of the hands of your medical team.”

We won CRPA, The ADA, Olmstead, and more, but our victories seem almost inversely proportional to the realities on the ground, as states slash services to the bone at the same time as the disabled population (uninsured or uninsurable) grows. The president announced his “Year of Community Living” as a mother in Illinois prepares to move her ventilator-dependent son away from his job and community and into an institution just because he’ll soon turn 21 and “age out” of what little services the feds require state Medicaid agencies provide to children.

The “out of sight, out of mind” mentality of our politicians makes me angry; the fact that so many advocates in the disability community, who should be fighting for our most vulnerable people, are every bit as unaware of the 21 cutoff infuriates me. The termination of Medicaid home care services at 21 is like this wormhole that’s continuing to suck innocent people in and lead them to institutionalization and/or death, and the fact that I’m (as far as I know) still the only activist noticing this and fighting back is intensely frustrating and disturbing. We’ve GOT to stop fiddling while Rome burns, and unite to end the worst injustices. And the ongoing FAILURE to rectify the 21 cutoff situation should certainly be at the top of that list.

Nick

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I couldn’t think of a better candidate for Surgeon General than Dr. Benjamin, and I was surprised and pleased that someone from my old hometown that I am familiar with hit the big-time!

President Obama announces Regina Benjamin as his nominee for Surgeon General

Dr. Benjamin works in a clinic in Bayou La Batre just south of Mobile, Alabama (where I’m from). As far as I know, she’s the first Surgeon General to come directly from the trenches caring for the poor, not a hot-shot surgeon who never sees the outside of a hospital, a public health administrator, or a leading health care CEO well-known among country club political donors. ALL Surgeons General should be from the hands-on world, with experience with the hard realities of getting appropriate health care for America’s poor majority.

No one knows these tough realities better than Regina Benjamin, who is one of the only doctors in the small shrimping town of Bayou la Batre along the Gulf of Mexico, where old French Catholic and old Anglo Catholic families have fished and shrimped for centuries, and South Vietnamese (Catholic) shrimpers fled as war refugees after the Vietnam war ended. Bayou la Batre attracted many Vietnamese families because it’s one of the only rural shoreside shrimping villages in America similar to theirs back home, where they can live in a similar environment and work with fishing nets in the ways their families have for millennia, no need to re-train for a new job. The Vietnamese shrimpers and fishermen have increasingly edged the old shrimping families out of the business with their willingness to live on their boats all season, and a seemingly infinite capacity for thrift, bartering fish for gasoline to run their boats and other clever ways of lowering costs. I once knew an ex-army medic and LPN who’s a direct descendant of Joesph Bosarge, the French-born guy who founded Bayou la Batre with a land grant from Spain in 1786, and he told me a lot about the area. I’ve visited Bayou la Batre a few times. I’ve also talked to several Vietnamese kids about it (some of them I went to high school with; despite being poor they were always #1 in the year-end academic rankings, way ahead of me, though I was high up there). My point is, I know exactly where Regina Benjamin is coming from, and it ain’t the same board rooms and government offices where they found most of the previous Surgeons General. She runs a free clinic, and treats poor whites, poor blacks and poor Asians (often by having one of the English-speaking schoolkids translateinterpret her medical instructions into Vietnamese). Like an early 20th century country doctor, Dr. Benjamin does house calls, and accepts whatever patients can pay, even if they can’t, or even if all they can do is barter her part of their catch. This is a doctor who has risen to the top not through the usual cutthroat tactics, not through being the best at what everyone else is doing, but by charting a different path, advocating for and caring for the most needy, showing us what the focus of the medical world should be, public service.

I first became familiar with Regina Benjamin when I was fighting my famous two-year campaign to get Alabama Medicaid to stop stripping home care coverage for people like me just because we turn 21 (full story here). Local WPMI TV news interviewed her about my fight (as she then was director-designate of the Alabama State Medical Association) and she made supportive comments and said of course Alabama Medicaid should cover those who really need it, and that they’re obviously overlooking some gaps.

Regina Benjamin advocating for Nick's Crusade, August 2001

I don’t know of any other doctor who would stick her neck out for justice for kids she’s never met. Dr. Benjamin is a special person, exactly the kind of person who should be put in a powerful position to affect change. This nomination is one thing President Obama is doing RIGHT.

Bayou la Batre is one of the few remaining Catholic fishing communities that still does the annual Blessing of the Fleet in hopes of a bountiful catch that year. Dr. Benjamin is Catholic also, and likely has strong moral convictions that have led her to devote her career to the poor. Her clinic, along with all of Bayou la Batre and much of Mobile (including our backyard), was wrecked by Hurricane Katrina. She rebuilt the clinic, only for it to burn to the ground the night before its grand reopening. Then she rebuilt again. Like a heroine in a Biblical fable or something, each crushing tragedy made her stronger, gained her more support and attention, only pushed her higher. She was awarded the papal cross Pro Ecclesia et Pontifice by Pope Benedict XVI for exceptional service to the people of her diocese.

Incredibly, now Dr. Benjamin has the far-right fringe calling her “baby killer” because she’s never taken a hard-line against abortion (which is understandable from a doctor in an impoverished community that sees too many rapes and pregnancies endangering the mother). Even dumber, people are attacking her for her weight! These critics have probably never been to the Deep South; she is svelte by Alabama standards! And they’re also clueless about the expectations black men have for the women in their community re: size (maybe I should do a post about the differences in cultural expectations).

Anyhow, the haters need to get a grip. This nomination is going to sail through faster than a shrimp boat in a hurricane!

Regina Benjamin is probably Obama’s best nomination yet.

Nick

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Director of HIV/AIDS Policy and a senior disability advisor on the Domestic Policy Council, Jeff Crowley, speaks at a Candidates' Form at the George Mason Center for Health Policy Research and Ethics

Jeff Crowley from the president’s Domestic Policy Council met with the board of the NDRN (National Disability Rights Network, formerly NAPAS¹) this week and a summary of how Crowley conveyed the administration’s views on the Community Choice Act was leaked to several listserves online. The disability community deserves to know what the thinking inside their government really is, so I am publicizing this text:

Jeff Crowley from President Obama’s Domestic Policy Council came to our NDRN Board meeting this week. I am certain many people on this list know him but this is the first time I’ve seen him. Here is a summary of what he said and how he said it.

He certainly confirmed that it is the administration’s intent to offer the initial health care proposal without including long term care.

He went on the express his regret at the outcome of the ADAPT action two weeks ago. He described himself as having “worked with ADAPT in the past” and certainly assumed no sense of apology or responsibility for the arrests or the dismissive comments of his colleague, just “live with it.”

In a very guarded and cautious way he expressed the desire to deal with long term care in the second session of this Congress. He described CCA as ‘one way to deal with it.’ But he also said there were other ways. As I said I never saw him before and maybe he’s always this taciturn. But his comments about CCA were lukewarm at best.

Several times he cautioned against ‘high expectations’ and was >generally very flat and careful in his delivery.

Others have more experience and insight in this but my impression was that if we are to succeed with CCA the thrust is going to come from Congress and that the administration is being very cautious.

For what it’s worth …

1. The National Association of Protection and Advocacy Systems (NAPAS). .I won the “2003 Advocacy Award” from NAPAS and traveled to Washington, DC to receive the award and deliver an acceptance speech.

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Fifth Nick’s Crusade Video Blog: “A Seat At The Table” Determining Health Reform, Doesn’t Include People With Disabilities from Alejandra Ospina on Vimeo.

In my fifth video blog, I go after the administration’s health reform deliberations for their lack of inclusiveness.

Full transcript of the video, with supporting links and footnotes

Hello, this is Nick Dupree for the Nick’s Crusade blog.

This is day 262 of me being in an institution, and tonight I’m gonna talk about Barack Obama and the insurance industry.

Lately, the administration has been really ramping up, and saying that health care is their #1 domestic priority.  The health secretary, and Joe Biden have both said, that this is #1 on the agenda.

Now there have been a flurry of meetings at the White House about the health care package and what’s it gonna look like, what’s gonna be in it, what’s not gonna be in it.  And recently, Barack Obama met in the Roosevelt room with the top insurance executives.  On HealthReform.gov, they released this picture¹, with the caption that these are the health care “STAKEHOLDERS.”  Look at this picture.  It’s all white people! (except for the president)   And it’s all MEN, except for the two women beside the president, there’s another woman, an industry lobbyist, an industry lobbyist who’s at the table.  The administration keeps talking about “a seat at the table,” that the industry has “a seat at the table,”   And they’re offering them “a seat at the table” so they won’t oppose the plan.  Now … where’s MY “seat at the table?”  Where’s YOUR “seat at the table?”   Where’s the “seat at the table” for the black people and the people in wheelchairs?  You don’t see any people in wheelchairs at the table do you?   You don’t see any black people,or Hispanics, or Asians, or any minorities around this table, do you?

We’re giving the “seat at the table” to the people who already have the power.  And the insurance industry, they already have the power; they don’t need help from the administration.  They’re making trillions².  And they’re getting trillions, by denying life-saving care to millions of people.   They’re trying to limit the use of life-saving medical care; they’re sending denial letters like they did with my little brother.

They’re trying …  they’re SQUEEZING the American people.  They’re basically these giant leeches on the American economy, and the American people³.  Everyday people are getting SCREWED by these guys, and Obama is offering them “a seat at the table.”

In exchange, they’re offering to lower the explosive growth of health care costs.  They’re not offering to lower costs, let’s make this clear.  They’re not offering to lower any costs; they’re offering to slightly slow the growth of costs.⁴

This is a promise that they made during the Jimmy Carter presidency⁵, and we all see…and we all see how that worked.  They didn’t keep their promise, and I see no reason why they’ll keep their promise this time.

Voluntary regulation does not work, and I see no reason why these guys are getting “a seat at the table” and people… people with disabilities, get no “seat at the table.”

I don’t think that’s right. And I think that’s something that needs to CHANGE.

Footnotes

1. this picture.

The photo was originally captioned “President Barack Obama met with healthcare stakeholders in the Roosevelt Room at the White House on May 11, 2009.

In this photo from HealthReform.gov, President Obama meets with various corporate pigdogs from the Health Care industry.

I found the above photo on HealthReform.gov (though it’s now been replaced, along with the related links, in one of their near-daily updates)

2. “The US health care sector has combined revenues of 1.5 trillion annually.  Hoovers.com Industry Overview: Healthcare Sector. (for comparison’s sake, the entire continent of Africa has a combined annual GDP of 1.3 trillion)

3. Publications and Research: Study Shows More People Go Without Health Coverage as Insurance Costs Outpace Income Eightfold

4. http://healthreform.gov/factsheethealthreformstake.pdf

5. From a quote from a Carter administration official, in “No One’s Falling For Big Health’s Bogus Promise to “Reform”" By Joshua Holland, AlterNet. Posted May 13, 2009.

This is the first video blog edited by myself independently

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Transcription (as captioned in the video):

Hello, this is Nick Dupree for the for the Nick’s Crusade blog. This is my fourth video blog, and today is the 252nd day that I’ve been in an institution because I can’t get access to community services. And it seems that the Obama administration is not going to help us fix this problem — the problem of the institutional bias, where if you need services, they’re not readily available in the community so, so many people end up in expensive institutions, and it’s a lot worse for them, lowers their quality of life, and ends up costing exponentially more. I know in Alabama, it costs a quarter of a million dollars to keep someone in an institution, and it cost $70,000 to give them 24/7 home care. It’s a very stupid financial decision that the government keeps making, and despite all the activism and the years of court decisions that are on our side, we’re still not getting change we can believe in, as Obama says.

It’s even more disturbing, because during the campaign, Obama promised us that he would support the Community Choice Act, which would let people have a choice to live in the community, versus being forced to go into a nursing home, as that’s all the government will pay for.

He promised he’d support the Community Choice Act during the campaign, but yesterday we discovered that the Community Choice Act has been removed from the White House website. The White House website had the Community Choice Act featured on their Disability web page, and now it’s gone. They erased us. They erased what we really needed, and that’s despicable. And now, they’re going forward with health reform initiatives, without addressing long-term care. They’re going to reform health care without addressing one of the largest expenses of health care, which is long-term care. They say “we don’t have time”. With this kind of expense, how can we afford to wait? How can we afford, morally, to segregate part of our population, and keep them trapped in nursing homes with no choice? It’s not moral.

I advise you to go to the website of the President’s health reform initiative, HealthReform.gov. There’s no mention of long-term care, not a word whatsoever. There’s no mention of nursing homes, there’s no mention of home care, and there’s definitely no mention of the Community Choice Act. Go to HealthReform.gov and see for yourself. We’re not included, and our segregation is continuing unabated. Nobody notices us. That’s something that really has to change.

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