When Alejandra mentioned to me that even Raul, like me one of two brothers with an uber rare muscle mitochondrial thing, on a ventilator full time and an awesome advocate too, went ahead with the Ice Bucket Challenge, I replied “if only ADAPT had a meme like that!” So together, Alejandra and I brainstormed a new, ADAPTed version of the challenge, and here it is.
I offer a different focus for the ice bucketed masses on social media, and try to give voice to the views of many like me in disability rights circles: we don’t want “eradicating neuromuscular diseases” to be the only agenda… quality of life is the key, and every day we’re fighting uphill against systems that hold us back from living the best lives we can.
Yes, awareness is great. Yes, medical research is super important, for quality of life too. Politicians who ham it up with an ice bucket after voting to sequester cut the NIH budget so severely that ALS research and all NIH programs had to regroup even more barebones than before shouldn’t be re-elected! Democrats voted for that sequester en masse while the Republicans held out for even more harsh cuts; nominating the lot of ’em for a bucket o’ scorpions challenge would be more like it.
Neuromuscular research funding should be auto-approved and Raytheon, Northrupp Grummond, KBR and their ilk should have to pass the hat on social media.
Medicaid long-term care still mandates antiquated nursing home care but in-home supports are “optional,” meaning most states offer only spotty or barely-existing home care, and even that is increasingly threatened. Private “major medical” health insurance like Blue Cross phased out coverage of long-term care nationwide in the early ’90s excepting a handful of examples, so unless you’ve purchased a special long-term care plan in your working years to cover full-time care in your senior years, Medicaid is the only place you can turn. Private long-term care plans aren’t available to ALS diagnosed people, preexisting condition y’know, much less sold for the Nicks and Rauls with inborn genetic muscle diseases.
This means the most severely affected by neuromuscular diseases like ALS, the Americans who need full-time care the most, have only the dilapidated 50 states/different Medicaid programs for the long-term care that is so essential for both survival and a life worth living. RIGHT NOW these vulnerable groups are unable to get the needed services and supports for the quality of life that they deserve, with their loved ones in their homes, and face worse conditions than they should because of our insane political system. That fight is RIGHT NOW, not four, five generations hence like the potential cures we seek.
Standing up for the people in the trenches now is important, awareness of our lives, our struggles, our dignity, is crucial oxygen for us as we face daily battles… Visit www.adapt.org to learn more and to donate.
The 21 cut-off, the policy that I fought hard to change in Alabama with a full campaign that I began two years before the cut-off would hit on my 21st birthday, and now I fight on this blog, is still a threat to many around the country. As people with severe disabilities are saved by technology and are increasingly able to grow up, greater and greater numbers of us will trip over the 21 cliff, “aging out” of the in-home care that we need for the most basic survival and dignity. It is a problem that too many state Medicaids essentially shove the people who need services and supports the most off the cliff as a 21st birthday present, and this continues to cause real harm.
We cannot allow states to undo the incredible progress people have made, with the help of life support technology, surviving to adulthood and thriving, adding our talents and contributions to our families, communities, states, and country. It is not the will of the American people that states pull the rug out from under the most vulnerable just because they’ve turned 21, but too many states have been doing exactly that for far too long; I’m continually haunted that, in Alabama, not all my friends survived it.
This video, featuring Sarah, and Jordan of the 21 disabled campaign, two college students grappling with the consequences or future consequences of the 21 cut-off and other hardships foisted on them by short-sighted Medicaid bureaucrats, will wake you up to the continuing crisis that aging out at 21 is right now, in 2013.
In this video ^ Jordan mentioned her first 21 disabled video: you can see that original 21 disabled video here that went viral and really made a difference, pressing Florida Medicaid into giving Jordan a reprieve until graduation.
I really admire how Jordan, with so little time remaining on the clock—just a few months—when she found out the 21 cut-off existed and found herself barreling toward the 21 cliff, was able to fight back effectively and win. A big part of her success was her savvy with social media, maximizing Facebook, Twitter and WordPress to get her YouTube video in front of 30,000 people in a matter of days. Neither YouTube, Facebook, Twitter or WordPress existed during “Nick’s Crusade” (March 2001-February 2003) but now that these social media tools ARE available, I hope me + the disability community writ large can leverage them effectively enough to make the bulk of internet users aware of the 21 cut-off, and then build the support necessary to end “aging out” of in-home care in all 50 states!
Sarah, who talks about her experiences first in the newest video, has no reprieve from the 21 cut-off on the horizon. She describes a situation of fighting tooth and nail to get services, waiting until age 18 to finally get some desperately needed services and supports so she could live out her college dreams, then upon arrival at the university dorms was told she would have to go home, for the excuse I’ve seen used again and again to oppress and exclude us, “liability reasons.” Sarah didn’t leave and didn’t give up, and that alone shows more fortitude than most could fathom. And now she is looking ahead at the 21 cliff, facing the prospect of the life-sustaining hands-on care that makes college possible for her going away after her 21st birthday.
Such a system as Florida has, that allows you just three years of the care you need to survive—from age 18 to 21—then pulls the rug out from under you mid-semester, is a uniquely cruel system. In fact, there is little else in American life THIS openly cruel in its impact on people with disabilities and their families, and, in my travels, I’ve not seen any other policy that poses as clear a clear and present danger to people with severe disabilities as this 21 cut-off policy does, which is why I’ll never shut up about it. Help me. Don’t let me be the only voice out there on this issue of “aging out” of life-sustaining services and supports! Given the intransigence of Florida Medicaid and the intractable nature of the Florida legislature when it comes to social programs, we will need all hands on deck to gain meaningful change for Sarah!
Awareness of this issue MUST go on the front burner. It is a nationwide problem: Raul Carranza in California, who is on a vent 24/7 like me, was forced out of college at ACLU for his 21st birthday when he no longer qualified as “pediatric” and the state became stingy (go to Raul’s web site for the full story, which is more complex than other cases, but has a very similar root cause).
Let’s do something.
IDEA 1: consider helping me with BLOGSWARM FOR SARAH: End the age 21 cut-off!. If I can get Sarah’s permission, I’d create a hub here on www.nickscrusade.org for a mass movement of blogging about preventing the dream-destroying 21 cut-off from harming Sarah and others, with everyone posting on their blogs on the issue, expressing their unique thoughts, views and ideas, and linking back to the central hub, as was done with past ADAPT Blogswarms and Blogging Against Disablism Day (BADD). Interested bloggers, please contact me via email at nick @ nickscrusade.org or on Twitter @NickDupree or on Facebook at Nick Dupree
IDEA 2: This goes hand-in-hand with the preceding idea; just MAKE JORDAN AND SARAH’S NEW VIDEO GO VIRAL! Put the video, embedded above, or this nickscrusade.org post with the video in it in front of as many people as possible; Facebook it, tweet it, re-tweet it, email it, reddit it, SHARE IT far and wide! Whether you blog about the video or not, SPREAD IT!
We live in interesting times. Now more than ever, survivors can get involved online and share their stories with the world. It’s an amazing thing that those of us who breathe and/or move with the help of technology can now use other, Internet-based technologies to participate in the world, make our unheard voices heard, give the megaphone of the blogosphere to the unrepresented, make public the pain and oppression that has always been hidden away… but to really be heard over the social media noise, to really maximize online tools and make a difference, WE NEED YOUR HELP! You, the person reading this right now.
The bulk of this post was taken from a piece of my upcoming memoir I’ve left on the cutting room floor.
It’s like 12-step programs say, “the first step to recovery is admitting you have a problem.”
So just getting people to understand that people with disabilities exist and admit that there are multiple, severe problems with the systems we rely on to survive—to the point we cannot survive in too many cases—just getting that understanding is a major hurdle. There’s this widespread false belief that people like me are “taken care of” and don’t need community help and involvement, when we do more than ever! The institutional bias is a huge problem. Austerity is a huge problem. I need people involved, I need volunteers, and the need for assistance and advocacy that I and the disability community as a whole NEED is only increasing as austerity budgets reduce the government support we’re receiving.
We, the grassroots activists, must educate the state governors and Medicaid commissioners who are running the programs and the legislators who are supposed to oversee them as to the real problems; it’s a bizarre psychedelic upside down situation where the insiders have little knowledge of the most egregious unintended consequences their programs create. We have fallen through the looking glass, and the captains don’t notice that their ships have holes in them. The few grassroots activists who see and come to understand how Medicaid programs in their state really work after they’re been through the special interest gauntlet and legislative sausage machine end up feeling like Cassandra, the Greek mythological prophetess who predicted doom and destruction and a Trojan horse was coming, was disbelieved, and was right. It’s hard to be the one person interrupting the party to point out the horrible truths.
The captains insist their hole-y fleet is just fine; “we’re not taking on water, and wouldn’t you be better off thinking positive and being grateful for what we have?” When optimism is preached by “see no evil, hear no evil” wind-up monkey leadership, it can actually be quite harmful. Sometimes politicians and CEOs employ an almost Maoist forced optimism to squelch the legitimate grievances of individuals. In the first few months of my campaign, Nick’s Crusade, the majority of the signs were discouraging. I wasn’t even sure that I could convince people that there was a problem. I kept going because I couldn’t do otherwise.
In this lecture, Barbara Ehrenreich talks about this forced optimism, its use as a tool of social control in authoritarian societies, its destructive consequences.
In the 2013-2014 period, states must decide whether to opt-in or opt-out of the “Medicaid expansion.”
Though it pains me deeply that the Affordable Care Act doesn’t fix any of the problems within Medicaid, even the most egregious, lethal flaws, I do understand how important the Medicaid expansion is, especially in the Southern states. The Medicaid expansion expands the number of people covered by raising the income threshold for eligibility. That means that families who are severely impoverished, making like $12,000 a year, can now qualify for Medicaid in places they couldn’t previously. like Florida. I know that it is hard to believe, but many states, especially in the Deep South, put their Medicaid eligibility thresholds ridiculously low; in Alabama, for example, you can’t qualify for Medicaid unless you make under $251 a month (or thereabouts, it may have changed slightly since I left the state). That means that Alabama Medicaid excludes the working poor, the bulk of all impoverished Alabamians unless they’re children or too disabled to work at all, leaving an enormous swath of Alabamians uninsured and bankrupting the hospitals who provide a great deal of “indigent care.” In Alabama, several rural hospitals have had to close following Medicaid budget cuts that came down from Montgomery, because their patients are mostly not covered, and they’re very dependent on the Medicaid reimbursements they can get for caring for the few rural people who are covered. A recent study published in the New England Journal of Medicine showed that prior Medicaid expansions led to a fall in mortality rates; in other words, expanding Medicaid saves lives.
Unfortunately, the states who need the Medicaid expansion the most, i.e. Alabama, are the ones refusing the expansion.
Medicaid works through matching funds, or FMAP (Federal Medical Assistance Percentage) that go toward each state’s Medicaid program. The FMAP varies based on the income of the state… here’s a cartoon I made to explain Medicaid funding:
Click to enlarge.
As you can see, the Medicaid expansion increases the number of eligibles, and grants states enhanced FMAP to cover almost all of the costs. But the Administration and Congress have given states enhanced match before, with the “stimulus” bill, the Recovery Act of 2009 (more about this round of enhanced matching). The news media is (per usual) misleading the public. Everywhere I’m seeing print headlines, radio segments and TV talking heads saying, without nuance, that governors opting-in to the Medicaid expansion are “accepting ObamaCare.”
Just because this Medicaid expansion is tucked into an amendment of the Affordable Care Act doesn’t mean you’re “accepting ObamaCare” by participating in it. I agree with Chris Christie on almost nothing, but it is important to be fair to everyone. Christie isn’t flip-flopping on ObamaCare, which I explained in Part 1 is all about subsidized private insurance exchanges, he is participating in Medicaid—a state-federal partnership signed into law alongside Medicare by President Lyndon Johnson in 1965—and he’s taking the enhanced match to pay for almost all the tab new eligibles will incur.
If we’d stop mislabeling governors as “flip-flopping,” maybe more red states would opt-in to the Medicaid expansion; the Southern states need this assistance the most desperately, but are the least likely to take the Administration up on its offer.
Florida Governor Rick Scott (R – Columbia Hospital Corporation) is, so far, the only Southern governor to show any openness to the expansion. Scott’s change of heart, which since he explicitly denounced the Medicaid expansion, was really a flip-flop, is discussed here on PBS. This is one of the least awful talking head segments I have found, though its failure to distinguish Medicaid and ObamaCare clearly enough may further contribute to the confusion:
Oh man, I am so frustrated that people misunderstand ObamaCare—the Affordable Care Act (ACA)—and continually frame it as something it’s not. They frame it as some sort of universal health care coverage, or as some vague new program that replaces Medicare and Medicaid, or at least fixes their most egregious problems (Medicaid’s age 21 cut-off, for example). None of the above are true. I’m writing a book, a memoir of my fight against Alabama Medicaid’s age 21 cut off and a book-length exploration of the plight of young vent-dependent people in general, and if you’re wondering how ObamaCare changes things vis a vis Medicaid, it doesn’t. The Affordable Care Act expands Medicaid eligibility, but doesn’t change the underlying rules and regulations, or fill its most egregious gaps. So there’s very little about ObamaCare in my book; it just isn’t all that relevant for those of us with severe disabilities who have to rely on Medicaid and Medicare.
What is ObamaCare?
The public needs to ask this over and over again, until the wrong assumptions dissipate. Congress never debated universal health care coverage. When Congress debated the Affordable Care Act, they were debating a proposal nearly identical to a bill titled the “Health Equity and Access Reform Today Act” (HEART Act) which was introduced by Senate Republicans in 1993 as the conservative alternative to Bill Clinton’s health care legislation (which focused on an employer mandate to provide health insurance). The crux of the conservative proposal was essentially, “we want universal health care too, but through private insurance, and we’ll do that through an individual mandate; every American will have health insurance coverage.” The individual mandate means that the government requires individual citizens to have insurance.
The mandate made its political début in a 1989 Heritage Foundation brief titled “Assuring Affordable Health Care for All Americans,” as a counterpoint to the single-payer system and the employer mandate, which were favored in Democratic circles. In the brief, Stuart Butler, the foundation’s health-care expert, argued, “Many states now require passengers in automobiles to wear seat-belts for their own protection. Many others require anybody driving a car to have liability insurance. But neither the federal government nor any state requires all households to protect themselves from the potentially catastrophic costs of a serious accident or illness. Under the Heritage plan, there would be such a requirement.” The mandate made its first legislative appearance in 1993, in the Health Equity and Access Reform Today Act—the Republicans’ alternative to President Clinton’s health-reform bill—which was sponsored by John Chafee, of Rhode Island, and co-sponsored by eighteen Republicans, including Bob Dole, who was then the Senate Minority Leader.
By 2009, the debate had turned upside down, with Democrats supporting the Heritage Foundation‘s individual mandate as the core of the proposed Affordable Care Act, and the Republicans unanimously against the individual mandate. Inexplicably, Democrats have moved to the right and embraced the rightist policies of the past—Barack Obama has positioned himself as a George H. W. Bush-type of moderate conservative president, a dramatic break from prior black presidential candidates like Shirley Chisholm and Jesse Jackson—and Republicans have turned against their own policies after supporting them for two decades. It’s bizarro world!
The costs of the Affordable Care Act. almost all of the costs, come from the individual mandate and the associated subsidies. The core of ObamaCare, the nut meat, is the system of subsidized health insurance exchanges. The main idea is that “health insurance is unaffordable and we’ll fix that by adding subsidies that make insurance affordable, and for the poor we will expand Medicaid eligibility, then most everyone will have coverage.” Affordable Care Act proponents called this “achieving universality” by tweaking multiple pieces of the system, like a piecemeal universal health care. This rang hollow even then; it didn’t even sound like the proponents believed their own rhetoric. I didn’t buy the claims that we’d “get to universality” any more than the incredible claims about health care providers voluntarily holding down prices as part of the ObamaCare grand bargain.
The debate in Congress over the Affordable Care Act primarily revolved around the individual mandate, the potential costs and red tape nightmares involved, and, inexplicably, abortion. Though the ACA includes a firewall between its subsidies and abortion, there aren’t any abortion-funding provisions in the bill, and the legislation is not intended to address abortion at all, still, the debate centered on abortion to an unexpected degree, in the House of Representatives especially. President Obama signed Executive Order 13535 to reinforce the Hyde Amendment’s prohibitions on federal funding for abortion as related to the ACA.
During the 2008 Democratic primary, Hillary Clinton was for the individual mandate and Barack Obama was against it. I agreed with that version of Obama. The idea of requiring citizens to buy a defective product (health insurance scams) from select corporations is terrifying. The U.S. Supreme Court was asked to rule on the question of whether the federal government can require buying insurance and fine citizens for not acting, for non-activity. The court gave the individual mandate a thumbs up, as long as the fine is implemented as a tax. I think that this sets a horrible precedent in terms of the fusion of corporation and state. The Obama Administration, and future administrations, will decide which health insurance plans meet Affordable Care Act standards and are allowed into the insurance exchanges, and as we already have seen, for example with ACA requirements being waived for the most powerful companies, how corrupt that process can be.
In 2013-2014 the main provisions of ObamaCare, the subsidized health insurance exchanges—some, like New York’s, will be state-run, but where governors have refused to set up exchanges, for example Alabama, there will be federal-run exchanges—will go into effect, along with the individual mandate. Right now, only two percent of health insurance plans meet the minimum coverage requirements to be sold on the exchanges. We’ll see how things change as the requirements kick in and the exchanges come online (literally, the exchanges will be online marketplaces). Expect to see more than a few kerfuffles over the individual mandate penalty fines, plus some serious sticker shock—the cheapest type of plan under the ACA is a “bronze plan,” and according to an IRS estimate, bronze family plans for 4 and 5 person families are assumed to cost $20,000 a year in 2016—though it seems the exchanges’ subsidies may pay for the bulk of the exorbitant costs. I don’t know that pouring subsidies in won’t just incentivize insurers to keep raising prices. Removing the downward pressure on prices consumers exert when they can’t afford premium hikes, the feds saying “no matter how bad you gouge, we’ll pay it” seems INSANE to me, like something that would only make sense to an industry lobbyist.
Massive subsidies that only increase are not a positive, in my view. Neither are subsidies to the health insurance companies amid an abusive dynamic “please stop killing children with preexisting conditions! Here, take $500 billion, just stop hurting us!” a positive; they’re actually the worst possible approach to this problem. And anyone who thinks abusive practices like the cruelty against those of us with preexisting conditions will end, you’re naive; new abuses and new loopholes to get old abuses through will appear on day 1. Awful unintended consequences are already arriving. The entire model desperately needs replacement.
Too often, health insurance is a scam. You pay in enormous sums each month just so the insurance company can deny you care in your hour of need. It’s essentially a very sophisticated, legal way to mug you each month. And when you subsidize something, you get more of it…
What is ObamaCare? it’s predominately a requirement to buy health insurance from select corporations with fines for disobedience, plus enormous subsidies for those selected corporations.
Next, in Part 2: the Supreme Court ruled that the “Medicaid expansion” provisions of the ACA must be voluntary for states. This has meant decision time for all 50 state governors across the country, but opting-in to the Medicaid expansion ISN’T “accepting ObamaCare.”
I’ve been thinking about my friend Chris a lot this week, especially in the days preceding and following March 4th, when the tragedy that took him happened.
When I was little, Chris was the bigger kid, both in age (four years older) and heft (kids with Duchenne Muscular Dystrophy—DMD, which I don’t have—tend to be heavy, seeming to keep their baby fat, plus, until the preteen years). He was the poster child for the Mobile MDA (Muscular Dystrophy Association). I’ve gone in-depth on this blog about what it was like being in the Mobile MDA in the 1980s before. There was really a sense that “I want to be involved in the MDA, I want my kids to be involved, and raise money for the MDA, so then when my child is older and in full decline and we need all the help we can get, the resources will be there.” Parent involvement in the MDA really was seen as an investment in your children’s future, so the feeling of betrayal was intense when the MDA of Mobile (transformed and unrecognizable as the community-engaged organization it was in 1980s) didn’t help Chris in his fight for survival or even note his death.
Chris and I really became friends as young adults, when he would hang out in my chat room (Disabled Teens Support Group) that I had set up as a safe space for people like us to share the unique challenges facing young people with disabilities. I ran the group on the Delphi Forums site, which was a very, very Web 1.0 platform that you could run chat rooms and message boards on. It was a clunky, antiquated tool, even at the time, and perhaps some of the language (“Disabled Teens”) was antiquated too, but we got a lot out of it. Chris and I shared a deep context of what it means to be a young, vent-dependent man in South Alabama, the very real challenges, threats, and pain involved, and a lot of those basics could go unsaid; that, in-and-of-itself, was very freeing. He was also the only other vent-dependent friend I had outside the home that was close enough (South Mobile) to see in person. I was at one of his birthday parties; an old guy in the neighborhood called the police about the loud rock music.
Chris had a mohawk, so dark red it was almost black. He loved metal. Especially metal performed by scantily-clad women. For him, you’re either 100% extreme, balls out, hardcore, or you’re wimpy (though he used much harsher terms than wimpy). So, he tended to see me as soft and decidedly un-metal, though he developed a deep respect for my work overturning Alabama Medicaid’s age 21 cut-off, or as he put it, “kicking ass.”
Chris, with his mohawk and gaunt, angular appearance, looked metal; he’d have been perfect for the glossy cover of a metal album. And it all fit. It fit as one of the only reasonable reactions to the unreasonable policy realities in the Deep South that yank all support and shove people with disabilities and their families to tiptoe a high-wire without a safety net. And it definitely fit his hardcore words, hardcore music, hardcore aesthetic. What’s more hardcore than life on a ventilator? What’s more extreme, more on the razor’s edge, than being in your face, rocking all over Mobile County, despite being on life support? And what’s more American than saying “f**k nature, the hell with the odds, I’m here, I’m on a vent, and I won’t give up.” To me and his friends, Chris was this amazing, punk rock “only in America” kind of figure. His death was a horrible loss.
Chris was also an incredible writer; I’ve never known anyone as good as him when it comes to short fiction. He once shared one of his short stories with me, about a Viking “berzerker” warrior. His chatting with my group on the Delphi Forums, led to him participating in other Delphi communities, RPG groups, where what he was really doing was writing a novel with others. Brilliant writing!! I wish it could’ve been properly compiled and published at that time.
Though this writing on Delphi, he met a young woman in Northern Alabama who he grew to love. Chris never let anyone neuter or infantilize him for a second; his passion for women was as hardcore as everything else about him. It’s awful that he never met this girl he loved and that overall, he never could get in-person reciprocal feeling from Alabama’s female half. Like me, he ultimately got the cold shoulder from every girl he met in Alabama.
In an email about sharing his feelings with the aforementioned girl, he wrote: “If you have a dream, or something you need to say, or to let out, don’t hesitate, don’t let go of that opportunity, it may never come again.”
The only extant piece on the web about Chris’ death is this, from Inclusion Daily News: Alabama Medicaid Policy Blamed For Friend’s Death (thank you Dave Reynolds for keeping this article available nine years in; I will keep it accessible from the front page sidebar of this blog in perpetuity.) Chris’ goals in life were like anyone’s, to survive, find his niche, and thrive. His parents did everything humanly possible to help him keep going, in sports terms, “they left it all on the field.” But they were put in an impossible situation by Alabama Medicaid’s policies, which ended most in-home care for recipients at age 21, knocking them down to about 12 hours of nursing care per week, apparently with the idea that the family could provide coverage without sleep for the rest of the week 24 hours a day. No human being can do that forever, though Chris’ family and friends tried, and kept it going for five years without Chris even being hospitalized. But it’s one of those probability things, Medicaid put them in a situation without care, where it is likely that eventually, a ventilator tube disconnection event would coincide with a time his mom went to the store and only one parent was present, and too asleep to respond given the exhaustion of the care every day. That tube disconnection meant… suffocating until brain dead. His parents shouldn’t blame themselves for the impossible situation Alabama Medicaid put them in. They never should’ve been thrust into that situation; if he weren’t in Alabama, it’s likely he would’ve received some care hours each day that would have enabled his mom to leave the home for supplies with peace of mind.
There’s a lot of blame to go around, but I think Alabama Medicaid should get the brunt of it for “just following orders,” mailing out termination notices with one line, “PDN (private duty nursing) to terminate after [xx.xx.xxxx]” (the person’s 21st birthday) and phoning nursing agencies to ensure they know no hours can be billed after that date, without ever ruminating on the barbarism of their actions or considering solutions. Part of the blame goes to the several Alabama politicians who ignored numerous pleas for help from Chris and his family. And, of course, the MDA ignored their cries for help when they could’ve helped Chris’ parents organize daily volunteers, or assisted somehow, large or small.
And I feel like part of the blame goes to me. Chris died after my “victory” over the 21 cut-off in February 2003, which set up a new program for vent-dependent, or in their terms, “technology assisted,” Alabamians who are “aging out” at 21. This program made the 21 cut-off, at least where ventboys are concerned, a thing of the past in Alabama, making my home state an island of relative sanity in a sea of Deep South states (including Florida) that continue to essentially shove their most vulnerable off a cliff just for turning 21, even now in 2013. But the “technology assisted” waiver I got started had no provision for grandfathering in people like Chris, cut off five years prior to the advent of the TA waiver. I never felt less victorious than the day Chris reacted to the fact that my “victory” meant no change for him. I made sure local news channel 15 knew about Chris’ situation; they did a significant feature on him about six months before his death. But I feel guilt that I didn’t launch a national effort for awareness and I didn’t push harder to involve lawyers. I also don’t understand the premise that I survive and he doesn’t.
I need to get back in the fight. Unless I’m actively fighting so similar tragedies don’t happen again, I don’t feel like I’ve found my niche. For 2013, this book I’m writing, this memoir/exposé, is like the “tip of the spear” of my new campaign on Medicaid 21-cut-off, with the focus on vent users. The vent-dependent population can’t afford to be invisible anymore.
So, as I said in Part 1, it’s very important to assess presidential candidates in a just and fair manner, and too often the news media is blaring the one sentence “not concerned about the very poor” sans context. But, to be honest, Romney’s answer is even worse when examined in its full context and nuance. Gail Collins over at the NYT wrote an excellent line-by-line breakdown of Mitt’s full statement. I won’t reprint her words here but I highly recommend you take a look.
Romney’s statement (read it here in full) singles out the 95% of Americans in the middle as his main concern. He’s not concerned about the top 1% and that leaves the bottom 4% he isn’t concerned about. Basic arithmetic shows the bottom 4% are those earning under $5,000 annually, a group politicians barely notice exist, much less spend time helping. This category would probably encompass mostly the elderly and disabled, and the homeless, including a lot of homeless veterans.
The most intelligent and spot-on post I’ve seen on this so far in the sprawling blogosphere is from the Columbia Journalism Review’s Campaign Desk: Three Thoughts on Mitt Romney’s ‘Very Poor’ Day : CJR
What makes it great is it actually does what journalism should, dig beneath the noise and the claims and try and unearth the facts. It points out that when Romney says the bottom 4% have a “very ample safety net” and it’s the middle class that needs help, it reveals a deep misunderstanding about the safety net in his brain. The article points out that social programs, for example Medicaid, spend more on long-term care for the elderly and disabled than on any other line item, and plenty of those folks qualify under medical assistance and Medicaid keeps them perched barely on the edge of a middle class quality of life. The article also cites data showing that many beneficiaries of Medicaid are actually middle-class families—certainly families in that broad “90-95 percent of Americans” that Romney says he wants to help—who “would otherwise be stuck with the full tab for care for their elderly and disabled relatives.” Medicaid is life support for the middle class as much as it’s a “safety net” for “the very poor.” More people should be cognizant of this data. Paul Ryan is: he hates that Medicaid is benefiting the middle class.
When pressed by CNN’s Soledad O’Brien after his initial “very poor” remark, Romney went on to say “We will hear from the Democrat Party about the plight of the poor.”
Essentially, he’s saying that’s their job, not Republicans’ role.
This references a political balance that may have existed 30 years ago, when Tip O’Neill and outspoken liberals controlled the House of Representatives and made sure the concerns of the poor were heard sometimes, but most certainly doesn’t exist now. No Democratic party leader that would remotely try to balance the scales toward the poor has existed since the era Tip O’Neill clinked high ball glasses in the Oval Office with Ronnie after 6 o’clock, and spent all his working hours before 6pm standing up to President Reagan, fighting for his blue-collar, poor base. He was by the unions, for the unions, and that doesn’t exist anymore. That is over; Tip O’Neill died in 1994 and no one remotely like him has succeeded him. Nancy Pelosi, the longest-serving Democratic Speaker of the House since O’Neill (she served four years) spends more time cozying up to corporate interests than unions. Instead of O’Neill, a hardscrabble Catholic boy from a poor Irish district, fighting the good fight for every day blue-collar people, we have Pelosi, an aloof elite holding a net worth of approximately $58 million in real estate, stock, and businesses she and her husband own, and is now facing an insider trading scandal. Sadly, Chris Hedges is right about the death of the liberal class.
When was the last time you heard Pelosi or Obama, or even the Clintons talk about the very poor? About the impoverished elderly? About people with disabilities? About the marginalized and excluded bottom 4% of Americans who have no apparent “trampoline out of poverty”? If I had a nickel for every time I’ve heard “from the Democrat party [sic] about the plight of the poor” over the past 20 years, I doubt I’d have enough nickels to make a phone call. Democrats frequently speechify about “working families,” when the problem is American families aren’t working, they can’t find enough work to make ends meet; too much of our economic base has been off-shored, and there hasn’t been enough innovation to replace what’s been lost. Obama and Pelosi talk about the middle class, campaigning for that big demographic same as Mitt Romney is, minus mentioning the “very poor” at all.
So given the Democrats abdicating their past role as fighters for the poor, we have to ask the Republicans as well, Romney included, for assistance for those trapped at the bottom, for help fixing the safety net and the upward ladder.
Unfortunately, the video footage is coming out, showing that “the people who need the help most are not the poor” is a recurring theme in Romney’s stump speeches. This is really troubling stuff, particularly after all the data has again and again shown the U.S. to lead the developed world in poverty [Source]. Also, as Romney says “if [the safety net] has holes in it, I will repair them,” he’s simultaneously pushing forth a tax plan that would blow a hole in social programs’ funding like we’ve never seen: Romney Tax Plan Would Require Slashing Social Safety Net … Says Romney Economic Adviser. It is disturbing that Romney says we have a “very ample safety net” while the next minute pushing a tax plan that—based on the analysis of his own economic adviser—would require slashing the very social programs he’s saying he’ll “repair.” Yet another contradiction from Willard “Mitt” Romney, the human mystery wrapped in an enigma. I want to reform the system to revolutionize how it sees us and respects our individual freedom, we need a very big change, I like the possibilities in some of Senator Wyden’s ideas for replacing Medicaid—which he calls a “caste system”—with something better and more equitable; what we don’t need is to destroy the program, death from a thousand cuts.
Still, I hope for some kind of educational moment can come out of this. That’s why I’ve written Romney HQ a letter. I have nothing against Governor Romney as a person, I’m sure he’s a great, affable guy, and I’d love to meet him to work on bringing individualized funding, choice and competition to Medicaid/Medicare instead of “one size fits all.” We don’t really know what kind of Republican Willard is deep down or how he’ll really govern—is he a lefty Rockefeller Republican like his dad, a moderate pragmatist like George H. W. Bush, a hard-right Reagan-and-Ayn-Rand type?—we don’t know. So why not assume he can be very reform-minded like his dad; why can’t Mitt be the one to lead the way in revolutionizing Medicaid and Medicare to be completely different? Choice, competition, individualized budgeting, cash and counseling—let’s go!
After all, Romney supporters like to refer to Mitt Romney as “Mr. Fix-it.” I’ve seen dudes holding “Romney: Mr. Fix-it” signs prior to the debates on cable news. I found this image on mittromneycentral.com:
Fan art by MittFan12 (Steve Thomas) In a bizarre interlude, me finding this “Romney Mr. Fix it” image led to me stumbling into the mittromneycentral.com chat room by accident. Most of the supporters in the chat were polite and cordial in answering my questions, and I left there with more respect for Team Romney than I came in with…
So, there’s been a dust up over Mitt Romney’s “I’m not concerned about the very poor” comments on CNN. A lot of the blogosphere is mindlessly blasting this quote sans context, and the TV news even worse, so Team Romney isn’t wrong to protest how this has been “taken out of context.” Cable news has been bad. So bad: stopping short of breaking it down into a few syllables and grunts between prescription drug advertisements.
But, to be honest, Romney’s answer is even worse when examined in its full context and nuance.
Here’s Mitt Romney’s “I’m not concerned about the very poor, I’m not concerned about the very rich, I’m campaigning for Americans in the middle” the relevant part of his interview with Soledad O’Brien, with all the context and nuance he gave CNN:
ROMNEY: You know, just let people get to know you better. The nice thing about what happened here in Florida is I got a chance to go across the state, meet with people. They heard what I am concerned about. They understand how I will be able to make things better.
I think people want someone who not just throws an incendiary bomb from time to time but someone who actually knows how it takes to improve their life, get home values rising again, to get jobs again in this country, and to make sure when soldiers come home they have a job waiting for them. And make sure people who are retired don’t have to worry about what’s going to happen at the end of the week.
This is a time people are worried. They’re frightened. They want someone who they have confidence in. And I believe I will be able to instill that confidence in the American people. And, by the way, I’m in this race because I care about Americans. I’m not concerned about the very poor. We have a safety net there. If it needs repair, I’ll fix it.
I’m not concerned about the very rich, they’re doing just fine. I’m concerned about the very heart of the America, the 90, 95 percent of Americans who right now are struggling and I’ll continue to take that message across the nation.
O’BRIEN: All right. So I know I said last question, but I’ve got to ask you. You just said I’m not concerned about the very poor because they have a safety net. And I think there are lots of very poor Americans who are struggling who would say that sounds odd. Can you explain that?
ROMNEY: Well, you had to finish the sentence, Soledad. I said I’m not concerned about the very poor that have the safety net, but if it has holes in it, I will repair them.
O’BRIEN: Got it. OK.
ROMNEY: The – the challenge right now – we will hear from the Democrat Party the plight of the poor, and – and there’s no question, it’s not good being poor and we have a safety net to help those that are very poor.
But my campaign is focused on middle income Americans. My campaign – you
can choose where to focus. You can focus on the rich. That’s not my focus. You can focus on the very poor. That’s not my focus.
My focus is on middle income Americans, retirees living on social security, people who cannot find work, folks who have kids that are getting ready to go to college. That – these are the people who’ve been most badly hurt during the Obama years.
We have a very ample safety net, and we can talk about whether it needs to be strengthened or whether there are holes in it. But we have food stamps, we have
Medicaid, we have housing vouchers, we have programs to help the poor. But the middle income Americans, they’re the folks that are really struggling right now, and they need someone that can help get this economy going for them.
O’BRIEN: All right. Mitt Romney, congratulations to you on your big victory last night. Thanks for talking with us. appreciate it.
For me, the “not concerned about the very poor” comment is one of the least disturbing parts of his answer here.
First, it’s what he said immediately following that: “We have a safety net there. If it needs repair, I’ll fix it.” That anyone who has been a leader in government can still essentially wonder aloud IF the safety net needs repair astonishes me. After all the tragic deaths (like the 12-year-old boy who died for lack of a dentist to simply pull a tooth) and horrible suffering that’s been well-documented and displayed, how can anyone not know our safety net needs a major shoring up if not—my position—a total rethinking and restructuring?
For those with severe disabilities dependent on Medicaid, the Republican cuts from 1995-2007 have had horrible consequences. I’ve had to fight like hell to survive. In 1996 in Alabama, Medicaid started gutting EPSDT (the federally-mandated program providing nursing care for those in need) and sending out termination notices to families in the mail. Then in 1999-2001 we had more aggressive cuts. They changed the rules so it’s only a temporary program to train caregivers to stay with their child 24/7, and they keep repeating that it is not the government’s role to “babysit” your child at all (even if your child is on life support and routinely coding). And now it is 2007 and Alabama barely funds it at all. We’ve almost been rolled back into the 1970s level. I’ve had friends die. I’m sick of tolerating this evil like it is a valid policy position. It is in no way valid nor deserving of our deference and patience. It is nothing but immoral…
I have seen too much suffering and death because of inadequate supports and invisible safety nets and I am frakking traumatized that people are still pushing this destructive right-wing mythology that if we chip away at government funding even further, that this will magically increase services. It has been tried for years and has failed every time.
I plan to drop Willard “Mitt” Romney a note, you could do the same. Let him know what problems in “safety net” programs need his help, concisely and politely. Appeal to his “Mr. Fix-it” rhetoric. I don’t know if anyone will be able to connect and begin a constructive dialogue with Team Romney, but if even one person did, it would have a wonderful impact.
Mitt Romney for President
P.O. Box 149756
Boston, MA 02114-9756
I’m happy that some of my blog posts have become particularly well-trafficked resources on the interweb. I’ve often written about historical topics that interest me, and, oddly enough, those posts get more hits than posts about disability, politics and injustice, the main subjects of my Nick’s Crusade Blog.
This is a survey of the most viewed posts ever on this site…
This post, about the explorer Zheng He and the voyages of his grand treasure ships, is usually the most viewed post for any given week. Not only does the post shed light on the way-ahead-of-their-time ways that the Yongle Emperor projected power and influence with technology like the printing press and an enormous Navy (techniques that would seldom be used with such sophistication until the 19th century) but it also remains very relevant because it details a Chinese period of prolonged international engagement, trade and wealth only rivaled by the high water mark of Chinese power today. The end of the treasure ships, with hardliners burning them as an isolationist backlash swept the empire, illuminates a pattern you see over and over again in Chinese history: after the inevitable bust comes following an economic boom, Conservative Confucians take over and crackdown on trade after a harsh isolationist reaction. Today, China-watchers and investors, and indeed the PRC regime, worry about another cycle of isolationist backlash cropping up if Chinese people in the underdeveloped heartland don’t feel enough improvement in their lives from foreign trade and become angry.
Rivaling “Zheng He” for the Top Search term leading people to my blog is “griffin” or related key words. This post is shockingly well-visited, and it’s one of the quickest ones I’ve written. I saw a program on the History channel about mythical creatures that suggested the Griffin came from ancient Scythian warriors who came upon dinosaur skulls and spread stories about Griffins to intimidate enemies, and decided to blast a quick blog post. I guess people really like Griffins.
This post, coming in a distant third in views, generates hits from the sheer bizarreness of the video it highlights, a war propaganda-era Disney short with Donald Duck dreaming he is a Nazi. Even though the film is clearly meant to mock and underline the failures of the Nazi system, seeing Donald in a Nazi uniform is still WEIRD!
I wanted to talk about the social model of services and supports for people with disabilities, and barriers to implementing it.
When you think about disability internationally, most disabled people in countries around the world are taken care of by their own families and their own communities. In Alabama, where I’m from, and in many of the poorer states, they didn’t get the medical model at all until federal funding in the 1960s. Prior to that, all you had was a kind of quasi-social model, with families and neighbors taking care of their disabled children, the same way they did in the 19th century and from time immemorial. A new social model of services and supports would essentially work like an enhanced version of that, with disabilities normal phenomena that communities live with and provide for.
In the first world countries, as families are working almost entirely outside of the home, they have no recourse but to use government services to help take care of their disabled children and adults. In Alabama, the attitude is that the most harsh, spartan medical model is all they can afford, and that they can’t afford to innovate. They have missed an opportunity to save money by re-imagining a social model that would put the power back in the hands of families and people with disabilities, instead of forcing them to spend on treatments that the medical model wants for them.
Across the country, budget cuts are removing the medical model more and more from our lives, because the states can no longer afford the kind of medical services that they’ve been paying for. The medical model won’t be the force it has been without enough public funding. So there’s more need than ever to implement a new social model of services and supports. In one of the conferences that I attended (TASH Boston ‘02) there was a session on what drives people to put their loved ones into nursing homes. And the number one reason found in studies was that when someone becomes incontinent of bladder and bowel, the family doesn’t want to deal with it, and puts them in a facility. There was one story where a mother wanted to put her autistic son in a facility just because he couldn’t figure out how to zipper his pants, though he could otherwise engage in self-care. This is the institutional bias, up close and personal, and it is ridiculous. We can no longer afford to put people with disabilities in segregated, medical model institutions. The funds saved by turning the institutional bias on its head and closing more of these terrible, outdated, freedom-killing institutions is great. We can’t afford these awful dinosaurs financially, and we can’t afford it in the human toll, in the human potential and spirits that are locked up.
To escape that fate of being put away forever in a nursing home, I had to fight Alabama Medicaid policies that would cut off home care services at age 21. My campaign, Nick’s Crusade, led to the Dupree v. Alabama Medicaid lawsuit, which used the Olmstead decision to end the practice of Alabama cutting off ventilator dependent people from in-home services once they turned 21. It was a victory that helped half a dozen people stay in their homes, but it didn’t solve the underlying problem, that even in the home, the medical model of home nursing care tends to segregate, restrict and limit the liberty and potential of people with disabilities.
Because Alejandra and I love each other, we made the decision to spend our lives together, as many people with and without disabilities do. However, most people with disabilities living in the U.S. run into the so-called “marriage penalty” if they receive federal Social Security benefits, which are reduced by one-third if two recipients marry. Choosing to declare our commitment to each other despite this policy, we held a commitment ceremony in Central Park on June 6, 2010. It was also an opportunity for others in the community to learn about and share their experiences with this injustice.
Getting the supports needed to maintain my health and safety, attain freedom to access the community and resume college remain problematic. I write and draw webcomics, such as Theodore Roosevelt and the Rough Riders vs. Zombies. I was going to show my work from a table at the MoCCA Festival, and ended up canceling because we didn’t have the help for getting me up in the chair and out to the festival. For me as a disabled man, “freedom,” means that I have good caregivers around me that can help me do stuff. Without those people, I’m stuck in my room at best, and, at worst, dead.
Nurses, personal care attendants, and other home caregivers will always remain enormously important in any model because in first world countries the cost of living is high, and thus the people doing the bulk of the care will be the ones who can do it without losing their apartment. Paid supports should be budgeted by the disabled person (see individualized budgets and the Cash & Counseling program) so that both the caregivers and the patient aren’t constantly battling middlemen–agencies and Medicaid, and so the patient can give their best staff higher pay and bonuses. This essay isn’t meant diminish the importance of nurses and PCAs but to re-imagine them as part of a support community that form around people with disabilities; with families and communities that refuse to shelve their people in prison-like nursing facilities, that refuse to use a strict, heartless medical model inside the home, that say NO to materialism and profiteering, and instead focus on care and caring. Personal care is incredibly intimate and sensitive, caregivers see and touch and care for wounds, deformities and vulnerabilities that no one else sees, this is soulful and special work; it should never be callously commodified or turned into a cold assembly line in a nursing facility. The people who are good at going into someone’s home and making them clean, comfortable, giving them care and freedom, are very special people. In a new social model, friends and neighbors of the disabled person partner with and lend their support to these special caregivers, helping them and assisting them to assist their patient. The caregivers in turn helping the friends to help their patient. They care about each other and collaborate to help the disabled person. The community loves and supports each other.
Relying on Medicaid to give me ALL the assistance needed to live a real life in the community will always be difficult as long as Medicaid is locked-in to the medical model. It’s near impossible without friends and volunteers in your community lending some support. What is needed is the social model: normalization of disability: for society at large to start seeing people with disabilities as equal members of families and communities, instead of undue burdens. If someone in the community had cared about the kid who couldn’t manage the zipper on his pants, he wouldn’t have been at risk of institutionalization at great cost to his community. If the community would give their time and love more, we’d need Medicaid, the increasingly dark, Kafkaesquebureaucracy that pays for services for disabled people, less.
There are plenty of ways for the community to support people with disabilities. When I was hospitalized for several months in early 1992, Bettie Hudgens, the founder of the Communications department at Spring Hill College, where my mom taught, created a sign up sheet so that volunteers would visit me every day, so I would have someone checking in on me during the hours mom was teaching. The signup sheet allowed the community to organize around me so that every day was covered. We need that kind of community building now more than ever.
Communities will eventually be forced to choose, will they pay more and more for Medicaid as its red tape continues to render it hilariously dysfunctional like a Soviet department, or will friends and neighbors pitch in to help the elderly get in and out of bed, and change soiled clothes so they wouldn’t have to be segregated in institutions, so their people with disabilities will have less involvement with the heartless Medicaid bureaucracy and be less exposed to the whims of the politicians that fund them. It’s up to usto implement a new social model, as the old models begin to collapse.
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