Tag: Medicaid

The Cost of Denial For People with Disabilities

To respond to the comments made during WBAI radio’s roundtable discussion about my latest blog essay “Why It’s Time For Survival Politics For People with Disabilities…”

The last statement in the radio segment about my blog was Josie Byzek saying that (my paraphrasing) the Tea Party may win big in the midterm elections, but then there could be a backlash at the ballots in two years (in the 2012 elections).
I don’t think the problem of inadequate services for people with disabilities will just go away with a political pendulum swing in two years. The dramatic changes that have already happened and will keep happening will ensure that these monkeys stay on our backs; because we squandered the budget for so many years on tax cuts and wars, budgetary realities will force severe benefit cuts, even if you had a 100% Dem Congress. No Congress will be able to govern in the way we’d all like, because of these very severe budgetary and political realities. Yes, part of the political reality is the Tea Party; those Tea Party activists and candidates who embrace an extreme form of Randism are more comfortable with disabled people’s blood on their hands than any political group has been in my lifetime; they’re completely comfortable demonizing people on public benefits as “robbers,” “leeches” and “parasites” and (I would argue) they’re completely irreconcilable with Judeo-Christian morality. Tea Party candidates and their Rand philosophy will be shaping the debate and helping define what is achievable legislatively like never before, and people with disabilities need to know about this, educate themselves, because this is a force that will affect our lives. But overlaying that is the larger problem of “we outta money.”

In this Dave Granlund cartoon, poor jobless people with a HELP sign reach out to Uncle Sam, but he just pulls out his empty pockets and says "I was going to ask you the same."

We’ll be paying the price for decades for the decision to try and pay for two simultaneous wars with tax cuts and “just go shopping!” and paying for it in numerous ways, some very painful. We gotta pay the piper, and we’ve run up a huuuuuuge tab. If history tells us anything, it’s that the tab is always borne by the poor and disabled, the most vulnerable and least able to pour money into campaigns to fight back.

Josie Byzek herself touched on the budgetary realities when mentioning sales tax revenue that helps fund state Medicaid isn’t the same anymore, the bottom fell out. We’ve got *apocalyptic* job loss, the last of the manufacturing sector exiting en masse, etc. Those hardhat-type 9-5 jobs won’t be coming back and you’d have to visit China to see them. The information tech world will be the source of jobs, but it hasn’t adapted and kept up enough to provide that yet, and it may be another lifetime before that happens. This will be a really ugly transition.

This Concord Coalition graph shows how Medicare, Medicaid and Social Security, in addition to interest on our enormous debt, continue to bloat the budget by % of GDP. In order to sustain benefit spending, we would need to HUGELY grow the economy, but currently, it's shrinking. Terrible choices are coming soon.

I’m arguing that technology, the economy, and politics are drastically shifting, and Medicare and Medicaid will soon change BIG TIME, so disability community leaders need to get in front of this and negotiate hard for the services we want to preserve most, because a lot of them ARE going away, and we have to get out of denial and start coping and adapting NOW! Catastrophic institutionalization, re-segregation, will happen unless we acknowledge that economic and budgetary realities mean that a lot of services are inevitably going away and negotiate hard for keeping select services we can’t go without (i.e. HCBS, Home and Community Based Services) using a cost-effectiveness argument. Congress won’t give a damn about us, but will care about cost if we make the case.

and y’know how Obama’s health reform bill increases Medicaid eligibility? It gives subsidies to help pay for the increased enrollment, but that enhanced FMAP is temporary. Then what? Then FAIL!! I’ve written about this in detail here; the eligibility mandates will hit the poorest states the hardest and they are already slashing programs to the bone to the extent they’re leaving us in our own waste. Once the eligibility mandates fully take effect in 2014, will the poorest states have to drop most care for people with disabilities? They could have to dump the people most in need, in favor of reshaping their programs to bring them in line with the new requirements, i.e. providing major medical coverage to low-income (able-bodied) adults. This is one of the worst parts of health “reform,” so very disconnected from the needs on the ground and the harsh realities we face.

This is a map of the worst and best Medicaid agencies in the U.S., with the reddest being the worst, and the lightest being the best. What I'm telling you is, this map will soon get much, much redder across the country.

In light of the situation, we need to be having conversations like “yes, we know that Medicaid dentistry and ophthalmology and free eyeglasses and prosthetics and leg braces and numerous things we’re accustomed to are going away, but we have to protect HCBS or the nursing facilities will cost the states EVEN MORE.”

We can’t afford the COST OF DENIAL. We can’t stay in denial that benefits will be changing; we can’t stay complacent! I’m saying WAKE UP, the societal, technological, economic and political changes are so great that benefits will be changing dramatically, and we aren’t prepared and we aren’t identifying priority areas to protect because there is an unwillingness to sacrifice ANYTHING, so Congress will likely cut EVERYTHING. Failure to get in front of this thing, staying in denial, will mean Congress will just impose 20% or 30% austerity across the board on all departments without understanding the issues involved.


Nick’s Crusade Blog Featured On Local Radio WBAI!

My blog posts are making waves! My new blog essay about the affect of the Tea Party and the related drastic benefit changes on people with disabilities was the subject of a roundtable discussion this morning on local WBAI radio’s disability chat show “The Largest Minority.”

You can listen to the radio discussion here.

Sept. 23 “The Largest Minority” on WBAI radio, featuring a reading of my blog essay “Why It’s Time For Survival Politics For People with Disabilities” and a roundtable discussion with cohosts T.K. Small & Lawrence Carter-Long, and guest Josie Byzek, New Mobility magazine

Listen to the discussion. I don’t agree that the shift in social services spending is a temporary problem that will be “all better” after the political pendulum swings back away from the Tea Party agenda.

I’m arguing that society, technology, the economy, and politics are drastically shifting, and Medicare and Medicaid will soon change BIG TIME, so disability community leaders need to get in front of this and negotiate hard for the services we want to preserve most, because a lot of them ARE going away, and we have to get out of denial and start coping and adapting NOW!

More on the important argument I’m making here: The Cost of Denial For People with Disabilities


Why It’s Time For Survival Politics For People with Disabilities

To listen to WBAI radio’s roundtable discussion about the below essay, go here.

This isn’t “The Great Recession,” it’s “The Great Change.” The recession–that is just a symptom of these enormous tectonic shifts going on (societally, technologically, economically, politically) and our inability to keep up has caused disruptions and economic downturn. That economic downturn is not the disorder, it’s just a symptom of the rapid changes spinning around us and our inability to cope. The change has come and will keep coming. Obama promised political change to help us adapt to all the other changes, but failed because of immediate backlash. Now, the backlash (led by the Tea Party) is bringing political change, and we’re headed for an upheaval that will radically shift ideas about the publicly-funded services and supports that keep people with disabilities alive and participating.

The Tea Party agenda is incredibly important for people with disabilities to learn about and understand because those ideas are here and will soon be back in the halls of power, BIG TIME.
Understand; the Tea Party movement is just the newest part of a self-described revolutionary movement that began in the ’60s with Ronald Reagan and first gained broad federal legislative power with the “Republican Revolution” brought by the 1994 midterm elections. The Republican Revolution brought us Newt Gingrich, Dick Armey, Tom DeLay, the leaders of the Revolution, and dozens and dozens of loyal soldiers under them. Those foot soldiers, Senators and Congressmen first empowered by the ’94 revolution, the “Revolutionary guard” if you will, make up the bulk of the Congressional GOP today. And they’re worried now because the Tea Party is leading a second revolution, and they want their seats. Rick Lazio is a good example. Lazio was yet another foot soldier for the Republican Revolution and its policy platform, the Contract with America (which demanded lower taxes, eliminating welfare, tougher anti-crime laws and a balanced budget amendment making deficits unconstitutional). That was no longer right-wing enough for conservative voters; Lazio got crushed by Tea Partier Carl Paladino in the GOP gubernatorial primary. You have to hate much more to be a real conservative. This is like one of Robespierre’s purges of earlier revolutionaries; it’s not enough to support the revolution and oppose the enemy, you have to show a frenzied enthusiasm for every facet of the revolution and consistently revile the enemy publicly, or face the guillotine. Paladino painted Lazio as a “liberal Republican” throughout the primary, an INSANE claim, and won because a huge plurality of Republicans actually believes this. Rick Lazio must feel like his head’s rolling down the palace rug right now, poor bastard. Republican Revolution of ’94 wasn’t enough; now, foaming ultra-conservatives demand Republican Revolution II!

Republican Revolution II has already started; they even use the language of revolution, openly. Example: from Carl Paladino’s victory speech: “The ruling class knows — they’ve seen it now — there’s a people’s revolution.”

Watch CBS News Videos Online
This video is a great primer on the Tea Party and what they’re all about.

This survey of the Tea Party shows that Tea Partiers are 89% white. Taken from the above CBS News video.
This survey of the Tea Party reveals that 58% of Tea Partiers keep guns in the home, and 63% (an overwhelming majority) get their political news from FOX News Channel. Taken from the above CBS News video.

Even if the GOP doesn’t take over the Senate and the House, the populist groundswell it has generated (and incumbents’ fear of losing their jobs) will severely limit what Congress can do.

What ideas are the Tea Party/Republican Revolution II based on?

Reaction. The primary idea/emotion of this movement is that Obama’s presidency and the Democratic Congress are threatening their way of life and they have to “take our country back.” Conservapedia, which often seems like a Colbert-penned parody but actually is a serious project founded by Andrew Schlafly (youngest son of early segregationist and anti-feminist leader Phyllis Schlafly), has a good article on the Tea Party movement and its founding motives, all of which are a reaction to Democrats and their policies. It really is akin to Italy’s Blackshirts; it’s an authoritarian mass movement (and is being studied as such by authoritarian psychology scholars). It fits the authoritarian blueprint to a tee, right down to the outcry of an oppressed “majority” against what they see as “radicals,” scapegoating (and fear-baiting) of minorities, fear of redistribution of wealth to the “lesser,” and rallying cries to return to a heralded, idealized past. They believe that if only Republicans (especially Tea Party-endorsed Republicans) controlled the government, the rapid changes affecting their lives and the economic anxieties and fear of losing privileges they cause would be reduced. Fear and rage animate this movement.

92% of Tea Partiers think Obama is turning America into a socialist state, according to this recent poll. Image taken from the above CBS News video.

Commentators online, including Michelle Malkin and Christopher Hitchens, have turned this AP Photo into the "Islamic Rage Boy" political meme that still floats around the blogosphere today.

It’s almost analogous to the infamous “Islamic Rage Boy” from Kashmir, in furious reaction to the Indian government that the protestors feel will eradicate their way of life. The Tea Party also sets up a battle for their way of life, absolute good vs. absolute, unadulterated evil, with no shades of gray in between.

The followers are reacting to economic anxieties, but the leaders are of an Ayn Randist-bent. If you’ve been an internet activist for over a decade, you could find them saying the same things they are now (staunch anti-federalism, strict constructionist view of the Constitution that damns all federal social programs as unconstitutional, blaming FDR and the New Deal for federal overreach and all subsequent economic problems, near-deification of Ronald Reagan, fundamentalist belief in Voodoo Economics to the point that they know that tax cuts can create enough new revenue to fund anything, white supremacy, extreme persecution complex, paranoid conspiracy theories about an all-controlling liberal elite) back in the Clinton and Bush years on web forums like FreeRepublic.com. Those wingnut views are now heard much more often as we allow the fringe to creep into the mainstream, but the hard-right ideas are not new. Online communities like FreeRepublic and their ilk would disgust most people in the first 20 minutes browsing threads; these are hard-right echo-chambers that have an incredibly radicalizing affect on their followers, environments where reviling “the other” is essential for being in the “in-crowd” and cross-pollination with known far-right extremist groups is vibrant and unconcealed. These guys have a hardcore agenda, and always sought to build a grassroots movement to primary out GOP incumbents and push the party to the fringe, but were never able to until the recession and widespread economic fear gave them a vehicle.

A neon green paper sign at the Tax Day Tea Party in Boston reads

What does the Tea Party mean for people with disabilities?

The Tea Party leaders’ Rand philosophy label us who use social services “robbers,” “leeches” and “parasites” because we suck up the wealth rightfully earned by the labors of others. Judging by this video of hate activists yelling abuse like “If you’re looking for a handout, you’re in the wrong part of town! Nothing for free here, you have to work for everything you get!” at a disabled man at a Tea Party rally, and throwing money at him in revulsion, this movement embraces Social Darwinism, and they really do intend hatred for us people with disabilities and cutting off our services. Though I too would like an end to UNNECESSARY government interventions (especially in the area of civil liberties, which conservatives seem to have abandoned en masse) what counts as necessary government intervention is where Rand-bots and I differ, because they see nearly every intervention as unwarranted tyrannical intrusion into private matters. For them, even saving people from dying of decubitus ulcers from lack of personal care is unwanted government overreach.

There are opponents of this extreme agenda within the conservative leadership, for example, the New York Conservative Party said: “If Carl Paladino wins this thing, it will cause severe damage — it could be for decades — to the Republican Party of New York State.” Many (correctly) predict an internal struggle over policy once the GOP wins Congress. If Tea Party candidates run the table, expect radical change in the services provided to us people with disabilities. More likely, incoming freshmen Congressmen will be unable to oust Leader John Boehner (R – Oompa Loompa) and compromises on policy goals are expected.

How should we adapt to survive drastic changes in social spending?

I call on disability community leaders to seek a meeting with future Speaker Boehner, as well as likely GOP budget planners Paul Ryan, Eric Cantor and Kevin McCarthy (who, during their book tour rolling out the 2010 Roadmap for America’s Future legislation, have been asking voters and fellow Congressmen for an adult conversation about how best to handle the coming scaledown in social services) and meet with them to discuss PRESERVING the most cost-effective services for people with disabilities: home and community based services (HCBS). If we people with disabilities have the needed home and community based services, we stay in our homes with our loved ones, producing value in our communities, paying sales taxes, property taxes, etc. But if those services are yanked out from under us, we end up in insanely expensive nursing facilities, or worse, dead. Conservatives are usually penny smart and pound foolish on this issue, slashing “optional” HCBS funding while leaving nursing home costs to continually balloon. That “institutional bias” has to change, or the affect on people with disabilities will be just devastating as political winds keep changing and funding streams dry up. The budget arithmetic just doesn’t work, so benefits have to scale down; stop thinking this won’t change, it IS changing!

Unless the disability community wakes up to the realities that Medicaid and Medicare will soon be drastically changing and we get IN FRONT OF the issue and begin educating and negotiating hard for our top 5 most essential services to preserve, our quality of life will go down the drain. Those of us in New York will be living with services like they have under Alabama Medicaid, and Alabamians with disabilities will fall to the level of Dominican Republic or Colombia or India. We have to prevent that. It’s time for hardcore SURVIVAL POLITICS!!

In Alabama, Medicaid policies really took a vicious turn after the first Republican Revolution took over Congress after the ’94 elections. Ideas about social services changed drastically overnight. In ’96-’97 I was fighting Alabama’s stated plan to end home nursing completely and ship every last one of us to institutions out-of-state. I won, but not before several people I knew died. After George W. Bush took over the presidency in 2001, Alabama Medicaid, began saying openly that they can’t afford home care and that it should be the responsibility of families and communities, not the state. Spending on home care dropped dramatically, to unprecedented lows. I had to lobby the state legislature, and eventually sue, to keep my care from being dropped when I turned 21. I won, and saved my younger brother, but my friend Chris died because no caregiver was at home to hear his disconnect alarm. Now with unprecedented yawning budget gaps, home and community based services are scant to non-existent in the red states. I escaped to New York just in the nick of time.

Please realize that the change is here already in most of the country, even California now–thanks to the Governator and a weak legislature. Too many in the NY disability community are happy, comfortable and complacent; ya’ll don’t see the tectonic shifts coming. It’s coming because of the growing consensus that we no longer want to pay for/can’t afford Medicaid and Medicare as it is now, the growing consensus for insane, rugged individualism. People with disabilities, WAKE UP! The time for soul-searching and tough negotiating with conservatives is NOW.

Listen to Paul Ryan talking about his “Roadmap.” Understand that soon we’ll have no choice but deep sacrifices and tough compromises, so the best approach is to negotiate hard for our biggest priorities, and start NOW!


Republican Revolution II: Electric Bugaloo

Terrifyingly far-right candidate Carl Paladino crushed state GOP-endorsed Rick Lazio Tuesday night and won the Republican nomination for Governor, meaning he will go head-to-head against Democratic nominee Andrew Cuomo for Governor of New York in the November 2nd election.

Photo of Republican Gubernatorial candidate Carl Paladino at a podium

Paladino is known for his “controversial” bigoted comments and extremist stances on the issues.

Here’s a snippet of what CBS News’ Political Hotsheet had to say about Paladino’s primary victory:

Paladino’s victory over Rick Lazio doesn’t much change Republican prospects in the gubernatorial race, with Democrat Andrew Cuomo expected to cruise to an easy win. But it could prove a drag on Republicans in downballot races in the state and also embarrass the GOP establishment.

In April, Paladino acknowledged forwarding emails including images of bestiality and derogatory characterizations of President Obama, including one offering a video clip of African tribesmen dancing that characterized the video as “Obama Inauguration Rehearsal.”

The Tea-Party backed candidate reportedly sent an e-mail depicting a horse having sex with a woman and another that included a pornographic video and the headline “Miss France 2008 F[***]ing.” He also reportedly sent out an e-mail depicting President Obama and First Lady Michelle Obama as a pimp and prostitute and one showing an airplane landing near black men with the caption “Holy Sh*t. run ni**ers, run!”

Paladino also made headlines for saying last month, as the Associated Press reported, that “he would transform some New York prisons into dormitories for welfare recipients, where they could work in state-sponsored jobs, get employment training and take lessons in ‘personal hygiene.'” The program, he said, would be voluntary.

He waded into the debate over the proposed Islamic cultural center two blocks from Ground Zero, going even further than many other Republicans by suggesting he would invoke eminent domain laws to block what he calls a symbol of “conquest.” He believes global warming is a “farce.” He has what one New York tabloid called a “10-year-old love child.” If the state budget is late, he promises to shut down the government. He defended a friend who called New York Assembly speaker Sheldon Silver, an Orthodox Jew, “an Antichrist or a Hitler.”

In endorsing Lazio before the vote, the New York Times said that by nominating him the GOP “could avoid the national embarrassment of a Paladino candidacy.”

The state GOP tried to keep Paladino off the state ballot, but he got enough signatures to force his way on; he was then able to capitalize on voter anger against the Albany establishment to overtake Lazio, a mainstream figure who had been widely-expected to easily win the nomination (and then lose to Cuomo). Paladino’s victory looks like more bad news for a weakening Republican party in New York – and good news for Democrats who now have a potent symbol to feed their preferred narrative that Republicans are too far out of the mainstream for most Americans.
Excerpt from Carl Paladino’s Controversial Statements Could Embarrass Republicans – Political Hotsheet | CBS News

These email forwards are real; thanks to WNYmedia, a muckraking upstate blog, you can see all of the emails here, if you can stomach hardcore pornography (including one with bestiality), vile racism and the N-word.

These profane emails have garnered LOTS OF attention; you don’t want the governor of New York, who would be responsible for one of the most diverse, dynamic immigrant populations in the world, to be neck-deep in casual racism like this! Even Murdoch’s right-leaning NY Post came out against Paladino after WNYmedia exposed the emails, and Paladino’s extramarital affairs and 10 year-old love child surfaced (while Paladino attacked Governor Paterson‘s affairs as part of “Albany’s corruption”). Given conservatives’ penchant to angrily legislate publicly against the very behavior they continually engage in privately, you can expect Paladino to crackdown on pornography and other things if elected governor.

Unfortunately, the scandalous headlines have obscured even scarier facts about Paladino: his plans for New York. He wants the state budget slashed by 20% overall, even if he has to shut down the government to do it, he wants to axe the New York Power Authority, which would presumably transfer the NYPA‘s 4.2 million kilowatts of clean hydroelectricity to profit-hungry businesses, and he wants to put poor people into “voluntary” labor camps in converted prisons. Most disturbing is his proposed $20 billion cut to New York Medicaid, which would shrink state Medicaid/DOH by 30%, and would be inconceivably devastating for those of us with severe disabilities who rely on in-home care to stay alive and in the home.

Via the Adirondack Daily Enterprise:

Aside from consolidating government, Paladino said he would drive down Medicaid costs by $20 billion, which would reduce expenses for counties. The entire cost of the program is $52 billion, of which half is paid by the federal government and the rest divided between the state and the counties. Paladino said he would “slash” Medicaid and social welfare benefits, and require applicants to produce identification and be fingerprinted and drug-tested.

If we have the needed services and supports, we stay in our homes with our loved ones, producing value in our communities, paying sales taxes, property taxes, etc. But if those services are yanked out from under us, we end up in insanely expensive nursing facilities, or worse, dead. Conservatives are typically penny smart and pound foolish on this issue, and merely two years ago it was unimaginable that the hard-right agenda would have this level of prominence and influence.

Republican Revolution (1994), which Rick Lazio was a foot soldier for in Congress, and wanted budget cuts, elimination of welfare, law and order and anti-union laws, is no longer conservative enough for Republican voters. You have to hate much more to be a real conservative. This is like one of Robespierre’s purges of earlier revolutionaries; it’s not enough to support the revolution and oppose the enemy, you have to show a frenzied enthusiasm for every facet of the revolution and consistently revile the enemy publicly, or face the guillotine. Paladino painted Lazio as a “liberal Republican” throughout the primary, an INSANE claim, and won because a huge plurality actually believes this. Rick Lazio must feel like his head’s rolling down the palace rug right now, poor bastard. Republican Revolution of ’94 wasn’t enough; now, foaming ultra-conservatives demand Republican Revolution II!

It seems the entire country has lurched to the right; America is being driven insane by economic anxieties and the drastic changes in so many things (the economy, technology, politics and society). All the changes have triggered a huge reactionary push-back, but, even more, a tectonic shift that makes the nuttiest elements in politics more powerful than even four years ago under the Bush Administration. For such an extremist candidate to win the GOP nod, even in New York, with its proud tradition of moderate/liberal Republican governors and senators, for the right-wing nuts to conquer the home of the old Rockefeller Republicans, you know that politics has shifted DRAMATICALLY.

The right-wing nuts are more powerful now than four years ago, even though with Obama (hope and change!) the exact inverse was supposed to be the case. Support for the First Amendment is shockingly low, and support for discrimination is shockingly high–just look at the support for a nationwide ban on mosques, espoused by former Speaker Gingrich. Why has politics slid so easily to the far-right?? WHY IS THIS? what happened?!

My theory for what happened is basically: it’s Democrats’ fault! Even amidst soaring, Bobby Kennedy-esque optimistic rhetoric, Democrats delivered the same crappy, tepid leadership and status quo, making lies out of “yes we can.”
Obama isn’t up for election on November 2nd, and that makes it BAD for Democrats’ chances, because none of the people running have Obama’s rhetorical gifts, and most of what’s left for voters is the Democrats with long records being corrupt and craven and ineffectual and impotent, the Democrats suck at campaigning and suck even more at governing, Like Charlie Rangel, along with the rest of the leadership (Pelosi, Reid, etc.) who are deeply corrupt. They gave up 3/4 of progressive aims on the health care bill, in exchange for campaign bribetributions. We ended up with a love letter to the health insurance industry, one of the most evil industries in the world (I believe that one day there will be a memorial for all the victims of this industry). The vast majority of the health care bill’s crazy $1 TTTTTTrillion price tag is subsidies to the health insurance industry, a sector that is already bloated, inefficient, and unethical. When you subsidize something, you’ll inevitably get more of it; in this case we’re subsidizing EVIL. If there were any justice, the health insurance cartels would be broken up via antitrust actions (like what happened to Ma Bell), rather than maintaining stable monopolies in each state. But wait, the health insurance industry is specifically exempted from antitrust law, and the Democrats chose to leave it that way!
Those who were suspicious of the health reform effort had their suspicions confirmed, and then some; the health reform bill truly does increase the power of health insurance companies over our lives. Democrats could have done health care reform the right way, guided by their better angels, and be heralded as heroes in this election; instead, they used Massachusetts’ fascist RomneyCare as their model and refused to adopt and build on proposals from a more classical liberal view, like Sen. Ron Wyden’s plan. Democrats were on their worst possible behavior, showing the whole world how craven and corrupt they can be. That means Democrats’ credibility is shot. Thus we have no real counter to the unAmerican monsters dominating the Right (when internment camps for Muslims and nationwide bans on mosque construction become mainstream in your party because no one will “refudiate” such extremism, you are officially monstrous). The Democratic party doesn’t have the testicular fortitude to fight back; hell, they cowered instead of force a vote on health care for 9/11 rescue workers!

We liberals now have no choice but to abandon the binary, up/down, Democrat/Republican, black/white, thinking that leads us to act as if we only elect more Democrats, everything would be peachy. We know that a progressive agenda is desperately needed in this country, but go wrong in assuming that the Democratic party will always pursue those goals. We need to primary the hell out of a lot of seats until we can purge the corruption and get some actually good candidates elected.

Meanwhile, we’re boned. We’re going to see a repeat of what happened to the Democrats in the ’94 elections, that ushered in the “Republican Revolution” (Newt Gingrich, Dick Armey, Tom DeLay & company). At that time, the Democrats had caved to their corporate masters as well, and liberal voters were dispirited, while conservative voters were in a frenzy. The same thing is coming to you live on Nov. 2nd. But, of course, Republican Revolution II: Electric Bugaloo is looking much scarier–they’ve gone all Jacobin; it’s dogmatic purity or the electoral guillotine.

some of the players in Republican Revolution II: Congressman John Boehner, media wanker Tucker Carlson, and dark queen Sarah Palin
Once Republican Revolution II starts, John Boehner will likely win Speaker of the House

Republican congressmen are already openly tweeting about what they want to do, an extended government shutdown (like Gingrich did). With the economy already tanking, a disruption in government services could trigger a disaster. But I’m even more concerned about fundamental shifts in American values, social services, and escalating confrontation with the Islamic world.

I don’t feel like I am living in “the age of Obama,” already I feel like I am living in the age of Glenn Beck.

Feds Fiddling While State Medicaid Programs BURN

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.”


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!


Fix The Broken Foundation Before Building A Skyscraper On Top Of It

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
The Tower of Babel
I support a public option in the new health care reform package, but (unlike some conservatives) I realize we already have several widely-used public options, Medicare and Medicaid, that the government runs, and should fix as a core part of health reform. If a new government program just continues the failures of Medicare and Medicaid, that’s not reform. We have to include the CCA in the bill, include a wider adoption of the PROMETHEUS bundled payment system (PROMETHEUS stands for Provider payment Reforms, Outcomes, Margins, Evidence, Transparency, Hassle-reduction, Excellence, Understandability, Sustainability) so that the government’s skewed, guaranteed-to-fail fee for service billing system doesn’t bankrupt Medicare. Don’t build a tower of babel that’s just going to fall. Listen to all the experts, doctors and patient advocates, and FIX MEDICARE AND MEDICAID. I agree (mostly) with this article by David Ignatius, focus on health system reform, not just “health insurance.” We have to fix the foundation or the new skyscraper is going to collapse.


Disabled Still Forced Into Institutions Just For Turning 21: Open Letter To The Disability Community, August 2009

Obama Administration Signs the CRPD Treaty, But Is In Flagrant Violation Of It, The ADA, Olmstead, and Its Own “Year of Community Living” PR Campaign, As Arbitrary Termination of Medicaid Home Care Services at Age 21 Continues Unabated

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.


Democrats Ignoring Long-Term Care, Activists Respond. LET MY PEOPLE GO!

44 years ago, Congress passed several historic amendments to the Social Security Act, the Medicare and Medicaid programs. Back then, there were no home ventilators, there were few medications for managing disease, there were no home Hoyer lifts, and Congress couldn’t imagine the elderly and disabled living at home successfully and independently. The technology and possibilities for independent living have been available for over three decades now, but the law has not changed. The feds only mandate that state Medicaid agencies cover long-term care in nursing homes and other institutions. Basically, Pharaoh will only allow you care in a prison-like setting. People with disabilities are forced every day to leave their taxpaying jobs and families behind to go into these prisons. It’s the only way they can get the care needed to stay alive. “Give up your freedom or give up your life,” is no choice at all.

The Pharaoh is now drafting his plan to reform America’s insane health care system, but has said that long-term care, which Medicaid is the number one provider of, will not be reformed in this package. How can they reform health care without addressing long-term care, one of the biggest expenses straining state budgets and bankrupting American families? It is bizarre that legislators and voters could ever see this as a separate issue, when it is one of the worst examples of how badly the system is broken. Institutions cost the most of any long-term care option, but are enshrined in law as mandatory, while home care services, the least expensive option, are slashed to the bone by states because they are “optional.” States are still forcing people with disabilities into institutions, the most costly option, because of the antiquated and discriminatory institutional bias in federal Medicaid law that both parties continue to choose to ignore.

The Democrats created the institutional bias when they drafted Medicaid law 44 years ago. Now, amidst their push to overhaul the system, they are ignoring calls from activists to rectify this injustice. On Tuesday, ADAPT activists, after months of letters and phone calls did not produce results, visited 25 Democratic offices around the country to demand that meetings be scheduled to hear their concerns, and that the Democrats apologize for 44 years of unjust policies that have stolen billions from taxpayers and stolen millions of productive lives from their communities. Here is a video clip of activists visiting Senator Baucus’ office in Missoula, MT and stating their case. Other activists were camped out at the DNC headquarters in Washington DC, keeping vigil until their demands are finally heard. 44 years is enough of this injustice; it’s time to change.


We all owe ADAPT our support. They are putting themselves on the line, facing arrest, threats, getting carried out of the DNC by police, their accessible portable toilet was confiscated, but they’re still speaking up when no one else will, for those in nursing homes that are not being heard. Pharaoh, LET MY PEOPLE GO!

Go Down Moses – Louis Armstrong


It's TIME to pass the CCA! on Twitpic

Government-Sponsored Ablism and Segregation Tears Families Apart

This post is for Blogging Against Disablism Day, BADD, 2009.

Blogging Against Disablism Day, May 1st 2009

There’s a dark part of America’s past (and present) that few are aware of: government taking children from their families and placing them in institutions.

It usually goes like this: doctors and social workers identify a disabled child, and advise the parents to send the child to an institution to get “the best of care,” from “the experts” and “be with kids like them.” Sometimes they’d recommend parents “move on with your lives.” In some cases, most of them decades ago, children were made wards of the state and whisked away from their families, for “their own good.” We’re talking about young kids here, 5-10 years old, many of which had mild disabilities, perhaps CP, MR or autism, not needing intensive supports at all.

That’s where the ablism comes in. Just because these children are different, or need some help, they’re assumed to need locking up in institutions. The doctors and social workers aren’t aware that “the experts” they’re letting raise these kids are the nurses and aides most likely to resent disability and the needs it involves (more work for them) and most likely to brutally restrict and control kids (to avert any possibility of trouble or more work for them). That means the kids will be horribly stunted: boys will never able to touch a girl’s hair, girls never able to “play doctor” with the boy across the street, and no one able to sneak an extra cookie (each meal is strictly controlled). And if they find a way to do these anyway, their reaching of these developmental milestones will be demonized; they’ll learn to hate their humanity, hate the needs and trouble their disabilities cause the staff.  They grow up in what’s essentially a special type of prison, where the natural experimentation crucial for human growth is banned. Not only are they segregated physically, they’re segregated from normal human contact, from basic experiences, from growth, from life.  While I wasn’t raised in an institution, I was exposed to this mentality, plenty. Special ed aides would grab my manual wheelchair and pull against me spinning the wheels, to prevent me from straying from them (and interacting with other children) during recess, to ensure my “safety.”


Each afternoon, at the city rehab hospital I live in, a yellow school bus pulls up out front. The bus is dropping off the institutionalized children who live here. You can’t help but wonder, “what will these children grow up to become?”  In my experience, from meeting those who moved to the community after the local institution (or “developmental center”) closed following the landmark 30-year-long Wyatt v. Stickney desegregation lawsuit, is that you can take the person out of the institution, but you can’t take the institution out of the person; their mind will, to an extent, forever be institutionalized.  They will never question authority figures, or take actions without the consent of an authority figure.  Some who got out are leading successful lives, with jobs and many things they could’ve never had in an institution (a great argument why more deinstitutionalization needs to happen NOW) but decades of success were robbed from them.  Their development was stunted, their independence has been stripped, and their mild mental differences became serious impairments, now requiring aides (they should maybe rename “developmental centers” “regression centers.”) It’s how they were trained, to be dependent.

America has set up this enormous infrastructure of segregation for people with disabilities, and it’s wrong. Why do we do this? It’s rooted in outdated, ablist ideas.  Institutionalization began in earnest in the 19th century, and picked up and expanded widely with the technology of the 20th century.  It was based on the false notions of that era, like the need to isolate the disabled in institutions far from the community in order to keep contagions at bay, put the vulnerable under care of “experts,” and the theory that “they’ll be happier around their own kind.”  The deeply-ingrained concept that “you’re different, therefore you should be segregated” is the pinnacle of bigoted ablist thinking, and it’s the underpinning of all this stuff.  And even with all these theories disproven, too many old institutions remain, sustained by inertia, special interest groups, and the lack of community-based alternatives.

It’s hard for me to blame the parents for consenting to send their kids to this fate when there are few, if any, community-based options to turn to. With little support, and confusion about what to do, it’s not surprising widespread institutionalization has happened. The state forces parents into a grim Faustian Bargain of necessity, something way too close to The Kinder Transport for America, forced to choose between sending children away, or leave them to some uncertain, horrible fate trying to raise them with no supports, no safety net.

Some families are now trying to find children lost to the gulags decades ago.

Kevin Hopkins holds a photo of his lost sister, from <em/>People Magazine
People magazine: Kevin Hopkins holds a photo of his lost sister

From People magazine:

(Newstands only; article not available on the magazine’s website.)

Families across the country are searching for loved ones with disabilities who were sent away to institutions years ago, often without warning or explanation.

Kevin Hopkins, 53, of Springfield, Virginia, is seeking his stepsister Janet, who was sent to an institution 42 years ago. “She was my best friend,” he said. “I just wish I could know where she was and see her again.”

Shawna Gagnon, 49, of Montgomery, Alabama said her sister Zena (Xena) was taken to a California hospital 43 years ago “where people hollered and were tied to the beds.”

Filmmaker Jeff Daly, creator of the documentary “Where’s Molly?”, has been working to find family links for the estimated 250,000 Americans who live in group homes or state institutions with no family contacts. He and the nonprofit ArcLink have built a relative search database that has already fostered more than 100 reunions.

Source: PatriciaEBauer.com: The Endlless Search

More institutions are closing under mounting allegations of human rights violations, but we need the community resources to make these outdated ablist models obsolete forever.  It’s obvious that the best environment for children is a natural family setting, but too many families are STILL forced to choose institutions, especially in the South (like my old home state of Alabama) where there are few community-based options to turn to.  The best thing for the child, would be to fund attendants from the community to assist the family in caring for the child in the home.  But home and community-based services (HCBS) are purely optional for state Medicaid agencies, not a mandated service under Medicaid law.  Meanwhile, it’s mandatory to fund the huge institutions that cost much more (often double or triple the expense) and (almost inevitably) neglect, set back and stifle human growth and potential.  The harsh inhumanity involved, demands change.  We are complicit in our government’s policies, and must demand better.  It’s time for the Community Choice Act, which would make providing home care mandatory for Medicaid too, and give people a real choice.  LET MY PEOPLE GO!!!

LET MY PEOPLE GO!! on silk, from jewishbazaar.com
"LET MY PEOPLE GO!!" on silk, from jewishbazaar.com

A CCA Banner, from Mark Boatmans Blog
A CCA Banner, from Mark Boatman's Blog

An ADAPT activist holds an Our Homes NOT Nursing Homes sign, at the DUH City Action, September 2008
An ADAPT activist holds an "Our Homes NOT Nursing Homes" sign, at the "DUH City" Action, September 2008


Nothing About Long-Term Care In HHS Progress Report

In recent days, I’ve been scouring the HHS email updates for anything of relevance to people with disabilities and our struggle for freedom.

Yesterday, HHS put out its Progress Report, “a comprehensive report on the Department’s progress over the first 100 days of the Obama Administration.” (PDF file)

It contains NOTHING about long term care, not a word about home care or nursing home transition, nothing about Olmstead, or the 2001 executive order supposedly implementing Olmstead.

The law is on our side. The administration isn’t yet. We get no mention in the “Progress Report.” We aren’t a priority.

That needs to change.