August 28, 2008
- The end of the beginning of the journey (Nick arrives at Coler-Goldwater Hospital in NYC from Mobile, via Atlanta and LGA).
Category: Health care and Disability Rights
2 years
Posted by – August 28, 2010
Feds Fiddling While State Medicaid Programs BURN
Posted by – May 21, 2010
Question: In light of Obama’s plan to expand Medicaid eligibility, is anyone in Congress noticing the MASSIVE state budget cuts to Medicaid across the country and ruminating about how that jives with this impending expansion? I fear that if states have to raise income eligibility and bring millions of uninsured onto the Medicaid rolls, that will mean even deeper cuts in “optional” home care programs to pay for the expansion, and even more people with disabilities’ dreams shattered.
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
Nick’s Essay on America’s Decline, with Big Solutions (long)
Posted by – May 15, 2010
I’ve been away for quite some time, I know, but I haven’t stopped thinking about public policy and the way things are going.
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
ADAPT Blogswarm, Fall Action 2009
Posted by – October 14, 2009
The ’swarm has arrived! Bloggers across the globe have united to shine a light on rampant unjust institutionalization and segregation of people with disabilities and ADAPTs Fall Action in Atlanta confronting it!
On Disability Unity
NextStep blog
WE ARE ALL IN THIS TOGETHER
Finding My Way: Journey of an Uppity Intellectual Activist Crip
Human Rights
Whose Planet Is It Anyway?
Supporting Allies
Insights
Sanabitur Anima Mea
Look Closer (my favorite post in the ’swarm)
Metamorphosis (Bob Kafka)
On the discrimination behind the institutional bias
Documenting The Action
PhilosopherCrip
Atlanta Action Days 1 & 2
Atlanta Action Day 3
The Roving Activist’s Blog
I am excited
Live from Atlanta
Today.com’s Official Disability Rights Blog
Action Day One: Conversations with Self
Action Day 2
Finding My Way: Journey of an Uppity Intellectual Activist Crip
Power is sexy and…
Composite: thoughts on poetics & tech
ADAPT in Atlanta kicking ass, taking names
Comment below to add a post to the ’swarm!
ADAPT Blogswarm, Fall Action 2009 Participants!
Posted by – October 8, 2009
I’ve been excited by the response to my call to blog to end institutionalization around the Fall National Action!
I’m honored to announce the following blogs will be participating:
PhilosopherCrip
Announcement post
The Roving Activist’s Blog
Intro
The Center for Disability Rights
Today.com’s Official Disability Rights Blog
Composite: thoughts on poetics & tech and Hack Ability
Empowering People Changing Lives
If you’re not yet listed as a participant and would like to be, please comment below. We need all the help we can get.
FREE OUR PEOPLE!!
Nick
Blog To End Unjust Institutionalization!
Posted by – October 5, 2009
ADAPT is going back to the heart of the civil rights movement, Atlanta, to demand that the promises made to Georgians (and all Americans) by the Supreme Court in Olmstead v. L.C. and E.W. are kept. Read ADAPT’s page on the action here.
Segregating people with disabilities in institutions solely because they need daily help, especially given the 21st century technology that can assist them and the widespread success of people with disabilities living in the community, is fundamentally unjust, immoral, overly costly, and, according to the Olmstead ruling, illegal under Title II of the ADA.
Olmstead, the case of two Georgia natives who wanted the state to stop segregating them, affirmed all Americans’ right to receive care in “the least restrictive setting” (i.e. not in prison-like institutions) and ordered all states to end unnecessary confinement of their disabled citizens (which it deemed illegal discrimination) at a “reasonable pace.” Most states have done little to nothing to comply. The institutional bias of the system is deeply entrenched, and even though the Olmstead decision came down 10 years ago last June, millions of people with disabilities are still kept out of sight, out of mind, stuck in institutions. “A right delayed is a right denied,” Martin Luther King, Jr. would say.
Georgia’s system, the focus of the Olmstead case, remains notoriously bad, insisting on expensive life-long institutionalizations that strip people of any choice in their daily lives, block opportunities to grow and become self sufficient, and kill hope. And most states are similarly awful, especially in the South. They refuse to heed the Supreme Court’s orders, reminiscent of their failure to follow school desegregation rulings “with all deliberate speed.”
We can no longer ignore illegal segregation and the community support services states must use to prevent it. We can no longer ignore Olmstead. We mustn’t put long-term care on the backburner and not include it in this year’s health care reform; telling us to wait another decade or more is deeply unjust. ADAPT will be in Atlanta, October 10-15, demanding that this change. You can help raise awareness around the Fall National Action by blogging!
The ADAPT Blogswarm, Fall ‘09, will collect posts raising the issues of the institutional bias, ablist and unjust institutionalization, lack of community-based services, long-term care reform, the Olmstead decision and posts highlighting ADAPT’s Fall Action. Blogswarm posts will all be listed here, on nickscrusade.org, on October 12.
Your blogging is incredibly important to raise awareness of these issues (often swept under the rug). Please contribute to the blogswarm!
For instructions on how to participate, see
ADAPT Blogswarm, Fall Action 2009
Thank you!
Nick
It’s MDA Telethon Time Again!!
Posted by – September 8, 2009
The MDA’s 44th annual Labor Day Telethon was on the TV. Since my family and I were on the local (Mobile, AL) MD Telethon several times, and my mom served a year as Mobile MDA’s president, I thought I should comment.
Many activists attack the MDA for fundraising based on pity. It’s true that their 1950s attitudes about disability can be really grating; the Telethon is decidedly stuck in the past, both in how they see us and their entertainment–it’s always had the kind of acts you would expect to see on The Tonight Show with Johnny Carson; this year’s guests included Tony Orlando, the new Menudo (sans Ricky Martin) and Charo. But what sticks in my craw isn’t that as much as the misleading nature of the Telethon.
That ridiculous caricature of Jerry Lewis, used as a Telethon logo for decades
Let’s look at some of the misleading claims from this year’s Telethon (from MDA.org):
Telethon claim: MDA provides flu shots to people with MD. “For only $30, you can provide a flu shot for Jerry’s Kids!”.
The truth: Just because national MDA authorizes local branches to cover flu shots, doesn’t mean all do. From what I’ve heard, one guy gets flu shots at an MDA clinic in California, but they aren’t available from Boston MDA. And I don’t know if the reborn Mobile, AL MDA does this, but I never saw the old Mobile MDA offer flu shots (prior to them getting shut down for fraud/embezzlement in 1993).
Telethon claim: MDA provides occupational therapy, physical therapy, and respiratory therapy consultations to people with MD.
The truth: I’m sure some clinics provide this, but I’ve never actually seen it or heard about people receiving this. And remember that if you don’t live near a clinic, you can’t access this, or any MDA services for that matter.
Telethon claim: Thanks to your generous donations all kids with MD can go to MDA summer camp, with no charge to the families!.
The truth: My mom was charged $500 per child. People aren’t barred from camp due to inability to pay, but many local branches directly contradict Telethon promises and bill parents.
Telethon claim: MDA provides wheelchairs for people with MD. On the Telethon, you see shiny new wheelchairs in a row, and all these happy people who got wheelchairs.
The truth: Even for young children they provide little of what is on the Telethon. They will pay up to $2000 toward the purchase of a wheelchair (only if Medicaid and/or private insurance won’t cover all of it) and these days $2k will cover about one tire on a powerchair. And even that small assistance is exceedingly difficult to get. So, needless to say, very few of us get wheelchairs from the MDA. In this annual report on the MDA web site, they brag about giving out the $2k equipment payment (for wheelchairs, crutches, braces, etc.) to 4,200 people in 2008. Think about that. Out of all the millions of MD patients in the U.S., only 4,200 got equipment help last year. There are probably 4000 people with muscular dystrophy in Alabama and Georgia alone who need chairs! The facts on the ground make MDA CEO Bob Ross’ claim that “millions depend on the MDA for their very survival” more than a bit dubious (Ross, who gets $500,000 a year salary from the MDA, “depends” on them way more than most MD patients!)
Jerry Lewis in front of the tote board at the 2007 Telethon
Right now we are in a situation where the public thinks the MDA is covering much more than they actually are, and that can sometimes even complicate efforts to get public sector assistance. When I was in Montgomery arguing against Medicaid’s 21-cutoff, a state senator said, “doesn’t the MDA cover that?” He was baffled and incredulous when told no.
The MDA could change its misleading ways by a) changing their policies and widely providing the goods and services advertised on the Telethon. OR b) stop misleading the audience that they are providing goods and services to us. Just come out and say, “we mainly do research, here are some research projects we are doing.” They could interview researchers and do a lot with the truth. I think it’d be cool to learn about MDA-funded scientific breakthroughs and what they mean. Show us illustrations of how dystrophin works, a diagram of a mitochondrion! Be honest and you’ll go far.
I wouldn’t mind the Telethon as much if they practiced what they preach or preached what they actually practiced. I want the MDA to reform, but I’m not holding my breath.
Nick
Related Bloggery:
Scott Sands Alive: Begging For Charity
Danny Kodmur’s story of the UCP Telethon, and how it improved
A Year In An Institution
Posted by – August 29, 2009
How many months have I been institutionalized?
August 28 marked a full year I’ve been in a NYC rehab hospital. It was a bittersweet anniversary: sweet because it’s one year since I succeeded in changing my life and moving close to my girl, and bitter because of the myriad of professionals that have failed to coordinate the home services required for me to transition to our apartment, confining me to the institution for over a year.
Hopefully I won’t make it past 13 months of institutionalization.
Nick
Fix The Broken Foundation Before Building A Skyscraper On Top Of It
Posted by – August 22, 2009
My biggest beef with Health Care Reform right now is that we’re building a new tower on top of a broken foundation. Medicare and Medicaid are badly broken, and we’re building more programs on top of that. Bad idea.
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
Is The U.S. The World Leader In Disability Rights?
Posted by – August 7, 2009
So, the U.S. has now signed on to the historic UN Convention on the Rights of People with Disabilities (CRPD). People are saying this is wonderful, the ACLU is saying that it marks America’s return as a world human rights leader (by the way, the Senate has yet to ratify the treaty). I’m concerned that this is largely happy talk, just more lip service while meanwhile we’re badly behind in enforcing the Rehab Act, the ADA, Olmstead, and the other disability rights legislation we’ve fought so hard for. Will the CRPA become yet another unenforced law on top of that growing pile? Particularly grating to me was this commentary on AAPD’s Justice For All blog, which closes with this:
The US can engage in meaningful partnerships across sectors and help developing nations with the construction of accessible infrastructure, expanding inclusive education and vocational training opportunities. By signing the Convention the US is dedicated to these efforts. Can we make a different, “Yes We Can!”
Wut?? The U.S. is going to be like the Peace Corps for accessibility of the third-world’s infrastructure or some $#!T?! PLEASE!! We can’t even implement our own disability rights laws! As we speak, the feds are moving against ENTIRE TOWNS that are inaccessible and violating the ADA! Don’t send the Accessibility Corps to Africa or India; first send them to renovate the Mobile Public Schools! First send them to Ann St. in Lower Manhattan, where most of the businesses are inaccessible, and all over the five boroughs, where inaccessible pre-war buildings seem to be the rule, not the exception. Where’s the US’ “meaningful partnerships across sectors” to address this inaccessible McDonald’s on 429 7th Ave. off W 34th, which is a major tourist area?
Picture of some serious McFail in accessibility. Alejandra provides us an important public service by documenting the many accessibility fails of NYC
We weren’t looking for some McDs yesterday, we were searching for pizza. The Spinelli’s pizza next door was accessible. When a locally-owned pizzeria tops a mega-giant multi-national chain in basic accessibility, that gigantic corporation needs to do some rethinking. As a special double bird to the elderly and disabled, this particular McDonald’s location has accessible entrances on either side of the stairs…that only open from the INSIDE, and only lead to stairs for the basement, staff confirmed. That leaves the middle stairs as the only access point for this location. Well done 7th Ave. McDonald’s, that’s some top-notch FAIL!
The U.S. has a lot of changes to make before we are a disability rights leader, an example to follow.
Any idea of when I’ll be able to access currently INACCESSIBLE public businesses? Maybe for the ADA’s 29th anniversary? 39th? Dammit, where’s the enforcement? We have no room to finger-wag and advise other countries about disability rights!
Nick
