Independent POV

Your Right to Call Me A Retard Doesn’t Trump Mine to Call You A Bigot

2010-12-26T06:06:00.000-08:00

First Published as a letter to the editor in the Washington Post on February 18, 2010
What is glaringly missing from the debate over the epithet "retard" in The Post [" 'Retard': The language of bigotry," op- ed, Feb. 15] is the voice of anyone with a disability who spent a lifetime enduring such garbage.
Since I was a child, growing up with cerebral palsy, I have put up with and, worse yet, witnessed others putting up with derision from schoolyard bullies, so-called satirists and politicians. Is such speech protected by the First Amendment? Certainly it is. Free speech, however, is a two-way street. If you are going to claim the right to utter the word, don't pretend to be foggy about its meaning.
The R-word is a slur based on the rankest forms of prejudice, fear and stereotyping, and everyone from kindergartners to those in high positions knows it. If you want to use the word, use it. But if you are an adult, don't try to shield yourself from criticism by claiming that those who challenge your words and your intent are just being "politically correct" when they call you out for being what you are -- a bigot.

Building on Success Works

2010-12-20T04:14:00.000-08:00

Previously published on Disability.gov on October 25, 2010
By Guest Blogger Bob Williams, Office of Employment Support Programs, Social Security Administration

In his best seller, Outliers, Malcolm Gladwell explores what enables certain people to experience extraordinary success that defies the odds and falls far outside of the norm. To Gladwell, the success of a Bill Gates or kids playing soccer does not depend so much on someone’s innate abilities, as it does on the "accumulative advantage(s)" he or she experiences in life.

For Gates, these included having access to some of the first computers in high school in the 70’s and then going to a college where he could live in a computer lab 24/7. This is known as the “10,000 hours rule.” Research shows kids born in January or March are likely to be far better at soccer than their friends born later the same year. Why? Because youngsters born in the spring get more coaching and time to play than their friends six to eight months younger.

Gladwell argues the more we understand what factors combine to create personal success, the more we can make those conditions available to others. I agree.

As a baby boomer with significant disabilities, who has a well-established career and a good income, I consider myself an outlier, having beaten more than a few statistical odds. The older I get, the more interested I become in figuring out how what I have experienced might enable young people to access a similar path to success. Here are some of the critical lessons that continue to guide me:

Setting the bar high. Some of my earliest memories of growing up in the 60’s are those of my parents telling me that I would go to college someday. I will never know what prompted them to hold out such hopes, but their belief became my talisman. I failed to make it into college right after high school. By luck and hard work, however, I was eventually accepted and enjoyed every minute.

Working hard pays off. I learned early that hard work matters. I saw my Dad, who owned a small construction company, leave for work early every day and return late. Similarly, my Mom worked long hours cleaning, cooking and taking me to therapy. And going to therapy, I learned that paid off as well. I learned through therapy how to keep my balance, put one step in front of another, to type and ride a tricycle – things that enabled me to keep up with my brothers and sisters, to surpass the low expectations of others and demonstrate to myself that I could do far more than others thought. When a child experiences small successes early, it has a huge cascading effect. Successes build on each other. Setbacks do not become permanent realities. The child learns to define him or herself by his or her successes rather than failures.

Learning from others. Many people in my life – my parents, family, teachers, professors, friends, bosses and colleagues – have offered me critical insights. Increasingly, however, I realize that other people with disabilities have taught me the most. In high school, when I seemed destined for a day activity program, friends with disabilities – some of whom had attended college after having been denied even a basic education – were insistent on making me see that I would go on to college. Largely, it was their confidence, experience and steadfast refusal to accept anything less for or from me that made me push past my initial rejections from college admissions offices.

Capitalizing on the times. Looking back, it is abundantly clear that one of the greatest advantages I have in life and my career is having grown up in the latter half of the 20th Century and living as I do now – in the Digital Age. There is simply no better time to have a significant disability and to be alive. Revolutionary changes in civil rights, technology, the workplace and national mores have occurred over the past 50 years and continue to take place with breakneck speed, leveling the playing field in ways that were scarcely imaginable a few years ago!

I am certainly aware and appreciative of the accumulative advantage I continue to enjoy. More than this, though, I am angry and perplexed that with so many opportunities and possibilities, so few Americans with disabilities have been able to reap the benefits. Building on success works. The challenge is making success a part of everyone’s life so it can work for us all.

Bob Williams was the Commissioner of the Administration on Developmental Disabilities and later headed the Office on Disability, Aging and Long Term Care Policy (in Health and Human Services) in the Clinton Administration. Bob is currently a Senior Advisor to the Acting Associate Commissioner of the Office of Employment Support Programs in the Social Security Administration.

Disability Rights and the Tenth Amendment Movement

2010-03-13T09:28:00.001-08:00

Several weeks ago, I was mocked when I said that the Tenth Amendment movement needs to be recognized and addressed as a serious threat to the fundamental rights of Americans with disabilities. The attached blog post on why and how IDEA should be regarded as unconstitutional under the Tenth Amendment is just the most specific example of why I believe this. It is far from the only reason, however. Like it or not, the more I follow the tenthers the more I gain in my respect for their sophistication, organization and coherence. For the most part, they go out of their way to appear rational, reasoned and reasonable -- distinguishing themselves from the Tea Party without even saying so. Some of their leaders also seek to distant the movement from the States’ rights legacy of the past even though one of its central and explicit tenets is that each state is free to nullify any federal law it chooses not to follow. According to the Tenth Amendment Center, which seems to be the virtual hub of the movement, defines this concept as follows:

Nullification: When a state ‘nullifies’ a federal law, it is proclaiming that the law in
question is void and inoperative, or ‘non-effective,’ within the boundaries of that state; or, in other words, not a law as far as that State is concerned.

The center is methodically organizing state by state to enact such measures as “State sovereignty” resolutions/legislation, “health care nullification” bills, medical marijuana bills, firearm freedom statutes and a host of similar items. All of which are, I believe, is meant to create constitutional fodder to challenge, curb and roll back the authority of the federal government to regulate all types of activities across states.

Make no mistake about it, though, the aim of the movement is broader still. Simply put, its adherents argue that if the original framers did not conceive or could not conceive of it in the eighteenth century – e.g., 21st century interstate commerce, civil rights, semi automatic weapons, the concept of United States vs. state citizenship, the need for a national social compact – the federal government has no business in interfering in such matters. What is most disturbing is their ultimate goal appears to be to undermine the very idea of America: E Pluribus Unum -- Out of many, one. Instead, they would divide and untie rather than unite the nation. Such notions to cannot go unchallenged.

Links:
“Has the Federal Government Violated California’s 10th Amendment Rights by Forcing Funding Under IDEA?”
http://california.tenthamendmentcenter.com/2010/03/has-the-federal-government-violated-californias-10th-amendment-rights-by-forcing-funding-under-idea/.
“The Tenth Amendment Movement” http://www.tenthamendmentcenter.com/the-10th-amendment-movement/.
Tenth Amendment Center’s State Affiliates, http://www.tenthamendmentcenter.com/state-groups/.

Sovereign Immunity v. One Nation:

2010-02-07T09:32:00.000-08:00

Note: I wrote the following more than 5 years ago. The book I refer to -- Narrowing the Nation -- addresses "sovereign immunity" (the 11th Amendment)not the 10th Amendment and broader notions around state sovereignty. However, it seems fair to say that both Amendments are seen by strict constructionists as essential to "narrowing the nation", including by rolling back the ADA, the reach of equal protection, etc. Given the increasing demands of the Tea Party, the Tenth Amendment movement, Sarah Palin, Ron Paul and others to allow states to nullify and otherwise pick and choose what national laws they choose to follow, I am reposting it:

Sovereign Immunity v. One Nation:
One Nation, indivisible. I’ve been thinking about this tenet of our democracy and the need to reclaim it a lot lately. Perhaps this is because I’ve spent the summer reading several books about the civil war. Or because I just began a new one called Narrowing the Nation’s Power about the current Supreme Court’s attempts to inoculate States, localities and their agents against any and practically all efforts to enforce a national set of protections in our Constitution and civil rights laws (Noonan, 2002). One thing that my summer reading is making clear to me is that supporters of “States’ rights” during the Civil War and Jim Crow era and the majority on today’s Court seem to share the following in common: The belief that each State is a sovereign that is somehow equal to, if not superior to the Nation. And, that as such it must be free to act and mete out “justice” as it sees fits without fear of having its laws, policies or practices challenged or called into disrepute by its citizens (or subjects) or the Congress.

According to the Court, each State is entitled to this type of immunity under the 11 th Amendment because private lawsuits imperil its “sovereign dignity” or credibility to govern (Noonan, 2002). Its majority argues that the founders clearly meant this to be the case. However, in his book John Noonan, a senior federal appeals judge in California appointed by Ronald Reagan, takes their logic to task. He points out that the plain language of the 11th Amendment does not limit the rights of citizens living in a particular State to bring a lawsuit against that State. Rather, it merely says that the federal courts should not arbitrate legal disputes brought by citizens against a State other than the one where they reside. In other words, the amendment is completely silent on issues of immunity, sovereign or otherwise.

Noonan also takes issue with the Court’s assertion that the Framers somehow meant this to be its “original intent” even absent such language. English common law provided immunity to the king so that he would be viewed as the maker of the law and his authority could not be challenged. The Court, therefore, believes the Framers naturally would have wanted to accord this same divine right to States. But as Noonan points out those who had fought a revolution against such unbridled power were not likely to confer the same authority upon either the States or the new national government.

Unfortunately, while like many great dissents Judge Noonan’s writings can help to set the judicial stage for reversing several edicts the Court has handed down in recent years, there is much to be done and suffered through in the meantime. In a string of 5 to 4 decisions, the high court has held that State actions must be regarded as being beyond reproach in two key ways. First, it has ruled in several cases, including those involving employment discrimination by States on the basis of age and disability, that common citizens aggrieved by a State’s action cannot be granted damages even when they prove that they suffered harm as a result. The Court has similarly held that because States enjoy this supposed constitutional right to sovereign immunity that it will take it upon itself to police Congress to ensure that it does not overstep its authority to provide citizens a private right of action to sue States and localities.

The case of Garret v. the University of Alabama, which involved disability related job discrimination at a State funded institution, is a good example of how the Court is flexing its muscles in this regard. In a decision written by Chief Justice William Rehnquist the Court ruled that in passing the Americans with Disabilities Act Congress failed to show that employment discrimination on the basis of disability was such a pervasive problem that States should be made to pay damages in such cases.

The Chief Justice said that Congress relied on anecdotes and second hand information when designing the ADA's State employment discrimination provisions and doing so failed to meet constitutional muster. Under Garrett, people with disabilities still have the right to sue States and localities for injunctive or other relief targeted to remedy specific acts of discrimination.

For the time being the Garrett decision also leaves intact both the employment and public services provisions of ADA. However, many civil rights and disability rights leaders as well as independent legal experts believe that the reasoning used in the decision will be used by the States’ rights majority on the Court to whittle away at and do fundamental damage to the ADA and other civil rights laws in other cases in the future. Moreover, the Garrett decision and others like it are certain to have a chilling effect on two groups in particular. It will severely hamper the ability of individual citizens to compel States to comply with the ADA and other federal civil rights protections as well as effectively hamstring the ability of Congress to try to find legislative remedies to widespread civil rights, economic and social injustices in the future.

Why? Because the Supreme Court now believes that it along with each of the States are in a far superior position to the American people and our Congress to decide the great rights and wrongs of the day far atop of a hill. The Court seems hell bent on making itself and, its cause celebre, the States accountable to no one and with a sovereign immunity writ large enough to impress King George III. There is much about the doctrine of sovereign immunity as propounded by the Supreme Court that will, hopefully, cause many all along the political spectrum – especially those who are centrists – alarm that the Supreme Court and the States are indeed “narrowing the power of the Nation” while greatly expanding their own spheres of influence and domination. This is the one possible silver lining in this ominous storm cloud looming large on our national horizon.

Placed in its proper perspective, however, the legalizing of the notion that States should be immune from being made to pay for violating the federal civil rights of its citizens in the form of monetary damages is but one symptom of a far more endemic and serious problem. Since colonial times up to the present, States have exercised great “discretion” in deciding to what degree, if any, the poor, children, people with disabilities, minorities, prisoners and others are to be afforded the same dignity, liberty and tools to live their lives as freely and fully as other citizens. Today, this is done every time a State allocates both how and how much of its resources as well as a great deal of federal funds are to be spent on education, Medicaid, corrections, welfare to work efforts, etc.

This is very much of a “time honored tradition” in our country and one that is likely to not only continue to rule the day well into the foreseeable future but ruin the everyday lives and futures of millions of Americans, particularly those with significant disabilities and others easily marginalized. It is also a tradition that can and must be shown to be at irreconcilable odds with national principles of fundamental fairness and equal protection under the law. Future essays will explore why this is the case, why it matters and what must be done about it.

Source: Noonan, John, Jr. Narrowing the Nation’s Power. University of California Press, 2002.

Something fated -- Part 1

2010-01-02T09:06:00.000-08:00

In the spring of 1977, I was a 20 year old about to graduate from high school and my future was crumbling around me. My parents, English teacher, guidance counselor, others with disabilities I looked up to like Phyllis Zlotnick, Armand Legault Bev Jackson and Edie Harris and even the Connecticut Division of Vocational Rehabilitation all were audacious enough to believe that this kid with a communication board and an IBM Selectric had what it took to go to college. However, I had applied to, visited and been rejected by the University of Illinois at Champaign-Urbana – the only school in the nation that I knew of which was accessible and welcomed students with disabilities. My world and expectations began to shrink. However, then I began to hear of this new law called 504 and those just like me who were sitting in to force the Carter Administration to make it come alive. It would be several years before I met the likes of Ed Roberts, Judy Heumann and Hale Zukas and decades more before as a Clinton era official I proudly visited the federal office building in San Francisco where the sit in were staged.

It was the evening when watching Walter Cronkite I heard the San Francisco sit in succeeded in forcing Carter and Califano to enforce Section 5O4, though; that I knew my life and that of the Nation would change for the better. A rush of pride, tears and joy swept over me that day. Those same feeling of absolute certainty and hope have enveloped me three other times since then: The day Senator Tom Harkin dedicated the final passage of ADA to children with disabilities born that day; the day Mandela freed all of his fellow South Africans regardless of the hue of their bodies from the crushing bondage of apartheid; and most recently, when Micah Fialka-Feldman, a 25 year old student with an intellectual disability won the right to live in a dorm at Michigan’s Oakland University where he is taking classes.

History is never linear, progress is excruciatingly slow and fate is not to be left to chance. We must shape and be ever ready to be shaped by it. The 504 sit ins and the lessons Fialka-Feldman offer important reminders of this. To borrow a phrase from the late, great Tim Cook – for a little history worth knowing on the 504 sit in and the debt we all must continue to pay forward go to:

The Power of 504 (open caption) part 1 and part 2 on DREDF videos

Best wishes for a more just 2010!

Something fated -- Part 2

2010-01-02T07:19:00.000-08:00

Micah Fialka-Feldman, a 25-year-old continuing education student attending Oakland University near Detroit, is a civil rights pioneer in the same class so to speak as James Meredith, who had to sue to attend and live in the dorms at the University of Mississippi in the 1960’s because he was black. Fialka-Feldman recently won a federal lawsuit analogous to Meredith to be able to do what most students take for granted -- live in a dorm.

Due to his intellectual disability, Fialka-Feldman is not pursuing a degree but instead is enrolled in the University’s Options program. Like similar programs at a growing number of colleges and universities across the country, Options provides students with intellectual and developmental disabilities both the opportunities and supports they need to take courses and make the most of college life.

The University, however, thought that education for someone like Fialka-Feldman should end at the dorm’s door and wanted to bar him from living there, ostensibly because he was not on a degree track. However, as Federal Judge Patrick Duggan ruled, the University also based its actions on his disability or more specifically on “prejudice, stereotype (and) unfounded fears” regarding persons with intellectual and developmental disabilities in particular. Duggan found this violated both the Americans with Disabilities Act and Section 5O4 of the Rehabilitation Act.

As a kid with significant disabilities growing up and going to school in the 60’s and 70’s I faced my own share of prejudice, stereotype and discrimination. Fortunately that begun to radically change when I somehow made it into college. College dorm life was the best thing that ever happened to me. For one of the first and the few times in my life, I felt a part of rather than a part from those surrounding me. Obama is President because in large part because now generations of us have grown up learning and living together. It is like the song says: “Come on people now, smile on your brother. Everybody get together try to love one another right now.“ That to me at least is the essence of what a quality liberal arts education ought to embrace and enhance – a richer, deeper understanding of our shared foibles, strengths and capacities – our common humanity.

Oakland University says it is still considering whether to appeal Duggan’s decision. If it does, it may win a reversal and bar Micah from the dorm. Even if this happen, though, justice will eventually win out. "The gradual progress of equality is something fated," de Tocqueville wrote, "every event and every man helps it along". This man and this event are spurring it on more quickly than most. We are all better for it and for that, lets all remember to pay it forward.

Response to Ethan Ellis? Blog on the CLASS Program

2010-01-01T05:45:00.001-08:00

Ethan Ellis' blog on the CLASS Program is a good read. There is, however, one fairly significant factual error in the post -- the CLASS program would be voluntary. Workers would need to "opt out" in order to avoid having pay roll deductions being taken out. There is the rub. Proponents predict most would stay enroll and not "opt out". CBO and the CMS actuary predict the young and "healthy" would not see any benefit to having a little less cash in their pockets each payday and would opt out by the droves. This is aka adverse selection and arguably would drive costs thru the roof. Both sides can point to research to bolster their case -- none of it definitive. I have my own issues with CLASS but have come to view it as a necessary, albeit incremental step. As a nation, we tend not to make social reforms in one fall swoop. That makes things messy as you note. But, I see no other way of getting there from here. One other New Year prediction -- CLASS will become a major point of contention. It might be in the conference report that is voted on by the House and Senate. I think, though, opponents of health reform have been laying low and will try to make it part of a final seize. Best wishes to you and yours for a better 2010!

The National Good

2009-10-10T04:28:00.000-07:00

Note: While I posted this nearly three years ago it seems extremely relevant to the debate -- or the lack of true debate -- over health reform and the National Good.

In “The Responsibility Era Starts Now” in the 11/6/06 NYT, Rahm Emanuel and Bruce Reed point out that as a candidate in 2000 George W. Bush pledged to usher in an Era of Responsibility. Bush and his entourage, of course, have instead gone out their way to spur an Age of Irresponsibility in government and every other facet of national life. However, as the two leading centrist Democrats point out this election may serve as another opportunity to breathe real meaning into what it mean to behave responsibly in 21st Century America.

They argue and I agree wholly that:

“Responsibility begins at the top. That means living up to the highest standards of public service. It means putting the nation’s books in balance, not running the country into debt. Above all, it means doing right by the future by making honest, good-faith efforts to solve the country’s problems, at home and abroad. Citizenship is not an entitlement program. It’s not about giving people a program for every problem; it’s about establishing the tools and conditions that will enable them to make the most of their own lives”

However, it also requires that we act on the fact that each of our fates and that of the Nation is inextricably one.

That is why I would strongly urge that that another word that has all but disappeared from our civil discourse being added to the moniker. What we must seek to usher in is an Era of National Responsibility. Lincoln and Roosevelt led our country through the hell of the Civil War and the Depression by reminding us that our strengths lies in taking responsibility for each others' lives and liberty and thus, the National Good. Not every American of their day embraced their ethic of mutual responsibility. But enough were convinced that the fates of we the people were inextricably linked to make all the difference. The challenge we face is the same. The politics of the right and unfortunately many others is to divide and atomized. Unless we reclaim the idea that we live in one Nation indivisible -- that we live in one America, rather than in "Red or Blue States", our democracy will continue to atrophy.

(Originally posted on Independently Speaking, 11-10-06)

Why We Must End All the Waiting

2009-10-05T04:56:00.000-07:00

Ethan Ellis’ latest blog post, “End Waiting Lists: Change We Can Believe In,” hits the nail on the head. His post focuses on the long and lengthy waiting lists that an estimated 300 to 500 thousand or more people with significant disabilities are either on official waiting lists for or go uncounted but plainly needs Medicaid community living services. However, Ellis’ piece also helps illustrate a far deeper endemic crisis: Waiting is a constant in too many Americans with disabilities’ lives. Too many of our brothers and sisters, fathers and mothers, too many of our families and community living workers are putting their lives on hold indefinitely. Endlessly:

Waiting for their freedom and to get out of a nursing home, an ICFMR, a mental health facility, a jail, a prison or some other toxic human waste bin and for the needed supports to succeed at doing so.

Waiting for community living supports to keep them free from such institutions as well as free from hunger or lying in their waste in their own homes and communities.

Waiting for two and half years (29 months) or more for Medicare coverage they should instead get before having to leave a job due to disability and go on SSDI.

Waiting for employer sponsored insurance that rarely comes with the low wage jobs where many, if not most, workers significant disabilities, their families and community supports workers are employed.

Waiting to get one more in a steady stream of denial of coverage notices from your insurer due to its favorite hyphenated hatchet, a pre-existing condition.

Waiting to lose your private and/or public coverage as a young adult with a disability and having your entire life, your health, your independence, your future suddenly jeopardized because of it.

Waiting and putting off needed care, splitting pills, enduring pain, skipping meals, not paying the rent and other basics all for the lack of coverage.

Waiting to obtain the most basic of preventive care -- mammograms, Pap smears, prostate and colorectal screenings, even getting x-rays or lying down on an exam table – either because such procedures are not affordable or accessible to them.

Waiting, in short, on a Democratic Congress to do what is right and responsible. Not just for the over the 50 million of us who have disabilities and our 20 million families but for the entire nation. They must stop waiting for the GOP, whose sole aim and that of highly paid insurance executives is to maintain the status quo at any costs. Congressional Democrats and the Obama administration must do what most Americans elected them to do nearly 12 months ago. The time for waiting and putting up with the politics of intimation, innuendo and the Big Stall is over.

The time to enact comprehensive genuine health reform legislation that includes a strong and robust public option, Senator Kennedy’s CLASS Plan, the Medicaid Community First Option and banning discriminatory practices such as pre-existing conditions and life time caps on benefits is now or never.

Reforms like these, if enacted, will not be a cure-all. Nor, will they eliminate in one fell swope the multiple barriers millions of children, adults and older Americans with disabilities face in obtaining decent, affordable health and community living coverage that we need to lead healthy, independent lives. But, taken together, such provisions are vital to first easing and then ending the intolerable waiting for what must become fundamental rights of all Americans, not just of a privilege of the rich and powerful few. Why can’t we wait? Because as Dr. King made clear simple justice in our democracy must never be made to wait.

Disability, Obesity and Community Living Reforms – Some Food for Thought:

2009-09-27T09:31:00.001-07:00

Disability, Obesity and Community Living Reforms – Some Food for Thought:
Increases in obesity and weight related health conditions, long-term illness, disability, institutionalization rates pose vital questions, civil rights issues and dilemmas as well as opportunities that the disability community needs to help grapple with, frame and address. This piece is meant to begin that conversation. Here are several findings from a recent research brief by Rand -- ”Disability & Obesity -- The Shape of Things to Come” – that should be a wake up call to those interested in creating equal access to community living services as well as possible ways to finance it:

. Obesity in the U.S. population has been increasing steadily over the past two decades – nearly one in five Americans (127 million adults) is overweight and 60 million are obese.
. The rate of severe (aka, morbid) obesity – generally defined as exceeding one’s ideal body weight by 100% or more – also rose perspicuously by 50% from 2000-2005.
. This means that today nearly one out of every twenty or about 9 million adults are severely obese in this country.

Obesity, particularly at its most significant forms, exacts mounting human and economic costs leading to increases in poor health outcomes, early death, higher disability rates among working age and older Americans and yes, increases in nursing home occupancy rates. Disability rates among elderly persons both here and in other developed countries have been generally on the decline over the past few decades. Researchers hypothesize this trend will reduce the need for long term services and supports but hedge their bets on just how much of an effect there might be. In contrast, there is much less gray area in Rand’s findings re: obesity related increases in disability and institutionalization rates among working age adults. According to Rand:

. Disability is trending upward among the post baby boomers and rising most steeply among those in their 30’s. Disability rates among this younger group have increased by 50% -- much of it linked to the growing girth of Gen-McD, cutting across all economic and social strata.
. Indeed, while mental illness is still the major cause of disability among working age Americans, the fastest growing causes are diabetes and musculoskeletal conditions that are often secondary conditions of obesity.

Persons who have existing disabilities also are more likely to be obese than those without a disability. This is particularly true for women and blacks who are disabled.

The Rand researchers further found that:

"Weight … has a dramatic effect on people’s ability to manage five basic activities of daily living: bathing, eating, dressing, walking across a room, and getting in or out of bed. For men, severe obesity is associated with a 300 percent increased probability of having limitations on these activities. The effects are even larger for women."

If these current trends continue, they further posit that “the nursing home population would likely grow 10-25 percent more than historical disability trends predict” and that LTSS costs borne by Medicaid as well as individuals, families and society would skyrocket. Of course, reversing or significantly slowing obesity and the secondary conditions and poor health outcomes it results would likely produce savings of the same magnitude.

But, can we prevent or at least ameliorate the effects of obesity without punishing and making pariahs out of those who are obese? That is a vexing open question.

Disability prevention has a troubling history and effect. Such effects have at times been extremely maudlin, reinforcing the worse in societal stereotype and most crushing of self-images (ala, the Jerry Lewis pity-athons). At other times, attempts in preventing and/or controlling a disability or an entire group of people with disabilities have had downright malevolent effects even to this day (ala, the pseudo-scientific attempts at eugenics, electro-shock and forced medication). Too often, the most blatant of discrimination and injustices have occurred thinly disguised as public health measures.

It is unfortunately easy to see how something similar could happen and is already happening with regard to obesity. Public ridicule and what is termed weight bias/discrimination targeting overweight and obese children and adults is rising. In a mid-1990’s, 7% of adult Americans said they were discriminated against due to their weight. By 2006, the proportion reporting weight discrimination nearly doubled to 12% of all adults. According to Yale’s Rudd Center for Food Policy and Obesity, weight bias can seriously undermine working age adults’:

n health and psychological well being;
n educational opportunity and achievement; and,
n hiring, promotion and earnings potential.

In children and youth who overweight or obese, it adverse consequences are equally if not more insidious and tragic. According to the National Education Association, for “fat students” going to school equals:

“ongoing prejudice, unnoticed discrimination, and almost constant harassment.… From nursery school through college, fat students experience ostracism, discouragement, and sometimes violence.”

This, of course, sounds sickeningly familiar to many of us who experienced the same bullying, harassment and worse in school due to our disabilities.

The most recent “in the news” example of how government can fuel and sanction such bias and scapegoating of persons based on their weight is debate over the so-called “fat tax. Many tax experts argue that such a tax would be both highly regressive and unlikely to produce much in the way of federal or state revenues. They might drive down consumption among some just as the high tax on cigarettes is thought to be contributing to driving down demand there. But at what costs in social ostracism? Why not bring the Ugly Laws back while we are at it.

Clearly, great care must be taken in designing and implementing public health strategies to prevent and ameliorate the obesity epidemic in ways that also aggressively combat the bigotry that accompanies it. Efforts in AIDS/HIV education and prevention offer important clues and lessons learned about how best this can be done without running roughshod over the humanity and fundamental rights of others.

Make no mistake about it, though, the debate over obesity has been joined and the disability community would do well to be an active and thoughtful part of it. My take is simply this: Like any other disabling condition, to the extent that obesity and/or its effects can be prevented, ameliorated and/or effectively managed, it would produce a series of vital win-wins. In this case, an ounce of prevention and effective management of obesity could well be worth hundreds of billions in savings. A small fraction of which would probably be more than sufficient to invest in and finance most reforms needed to reverse the institutional and isolation biases in both Medicare and Medicaid by equalizing access to community living services and supports. Proponents of a just and effective LTSS policy in the U.S. would be wise to join with the public health community, civil rights advocates and others in arguing that this can and must be done in a way that maximize the health, independence, inclusion, rights and liberties of all Americans.

Governing, Social Networking Sites – Leading to Greater Accessibility and Free Speech ????

2009-09-26T05:35:00.000-07:00

Accessibility and Web 2.0 is currently one of the third viewed articles on Governing magazine’s website. The main point of this piece that it glosses over a lot is that governments at all levels are increasingly using social networking sites in two ways: 1. To make a virtual town hall meeting 24/7 where the public can voice their opinion, lodge greivances, seek redress, presumably even practice or not practice a religion as one sees fit; and, 2. Deliver and/or facilitate goods, services and equal opportunity especially in respect to such things as education and employment. The article mentions that a government entity's failure to address web access issues when using these sites may violate the Rehab Act. Now I am no lawyer but to me it likewise violates something that if memory serves is called the 1st Amendment as well.

Improved Diabetes, Obesity and Disability Management Could Yield Savings

2009-09-16T03:58:00.000-07:00

The study, “Using Clinical Information to Project Federal Health Care Spending”, which was published as a September 1 Web Exclusive in Health Affairs, yields important insights in at least two key areas. First, it presents a model for how the Congressional Budget Office and the Office of Management and Budget can forecast the short and long term costs and savings associated with initiatives to better manage and ameliorate the effects of major long term conditions such as diabetes. Current costs estimating methods look at cost and savings only over a relatively short 10-year time span, which often distorts what true spending and savings patterns might really look like over the longer haul. In reporting on the study, The Washington Post notes:

"Preventive services for the chronically ill may reduce health-care costs, but they are unlikely to generate the kind of fantastic savings that President Obama and other Democrats have said could help pay for an overhaul of the nation's health system, according to a study being published Tuesday." "Using data from long-standing clinical trials, researchers projected the cost of caring for people with Type-2 diabetes as they progress from diagnosis to various complications and death. Enrolling federally-insured patients in a simple but aggressive program to control the disease would cost the government $1,024 per person per year — money that largely would be recovered after 25 years through lower spending on dialysis, kidney transplants, amputations and other forms of treatment, the study found. However, except for the youngest diabetics, the additional services would add to overall health spending, not decrease it, the study shows." These findings offer health care reform advocates added ammunition regarding arguments "that the 10-year horizon typically used by CBO analysts is too brief to capture the savings that eventually result from improved public health." The authors suggest that the CBO use a 25-year budget window to calculate prevention program costs (Montgomery, 9/1).

The Post further reports that House Speaker Nancy Pelosi and Sen. Tom Harkin (D-Iowa), among others, have been highly critical of how under the current rules CBO cannot include potentially large long term savings that might occur outside the ten year window in any of its scoring of health and long term services reform legislation. Studies like this one offer two sets of important insights and opportunities:

First, such research clearly shows that if we as a nation are to have any real chance of “bending the curve” of health and LTSS spending, we must get better at identifying, managing and mitigating the effects of diabetes, obesity and other chronic conditions. Rand recently published a brief aptly entitled, “Disability & Obesity -- The Shape of Things to Come”, that is also a must read for anyone committed to bringing about true health and community living services and supports reform and finding savings to pay for it. One just has to go to nursing homes in DC a stone’s throw away from Congress and the White House to see that the shape of things to come is already here and the time to reshape things is now.
Second, while these studies come too late to have much of an effect on the current health reform debate, they can and likely will affect how CBO and OMB as well as the little known but extremely influential CMS actuaries score future initiatives. Disability activists and our policy-making allies would be well advised to recognize, however, that this brings with it both good news and bad news – for where there are potential long-term savings there are likely to be long-term costs to be identified and scored as well.

August 24th with the White House Health Reform Team

2009-09-01T04:47:00.000-07:00

Several of us recently met with Nancy Ann DeParle, the President's chief strategist on health reform, to discuss ways to include key components of the the CCA in the final legislation. It was extremely good to sit down first with President Obama in July and then his health reform team in August and know that they are genuinely interested in working with people with disabilities and our families. As is self evident to all of us, we have the most to gain or lose in the next week as health reform takes shape or the insurance ... Read Moreindustry and their allies on the fringe are allowed to beat it to a pulp. Both on the health reform debate writ large and working to include the Community First Choice Medicaid Option in the final legislation, I am convinced we can and must make the vital difference."

See “Disability Leadership Meet With White House Staff on Health Reform”

2009-03-01T10:04:00.000-08:00

Medicaid community living services and the stimulus
Bob Williams 1

Providing Adequate Funding for
State Medicaid Health and Community Living Services:
Medicaid provides a vital health coverage safety net to nearly 50 million Americans, funded jointly by the federal government and the states. In doing so, the program plays an especially indispensable role in providing comprehensive health care coverage to roughly 10 million children, adults and older Americans with disabilities daily. This maybe particularly true with regard to the estimated 3.3 million of those that rely on it for long term services -- over one half of who live in their homes and communities. Medicaid carries out what many considered being its most essential roles, however, in bad times like these when it must expand to provide coverage to increasing numbers of unemployed and uninsured individuals and families. All of which comes at a time when states are low on revenue and must cut other services to grow the safety net.

In other words, the Medicaid program is “countercyclical”. States must expand the number of those it covers and the costs of doing so at the very times when they are least able to afford it. In past recessions, this invariably has led states to reduce or at least curtail the expansion of services that enable people with disabilities to live and work in their community. The Wall Street Journal recently reported the same pattern is already emerging today. It noted that a recent survey found that 41 states already face current or looming budget deficits and have already made Medicaid cuts or are considering them.

The WSJ further found that at least one third of all states, in fact, are currently targeting cuts in personal care and other community living services for people with disabilities.
More may follow suit when the recession worsens. Still others maybe forced to abandon or postpone plans to reduce long waiting lists for such services. Over 250 thousand people with a wide range of developmental, intellectual, mental, physical and often multiple disabilities are currently consigned to wait for services for periods ranging from several months to a year or more. Thousands more who could and desperately want to move back into their community from a nursing home or another institution likely will be forced to remain needlessly institutionalized instead.

Cuts and delays that states feel they must make in Medicaid community living services to deal with budget short falls, therefore, will undermine the health and independence of those with disabilities and their families that rely on them most. It undermines the basic liberty of these Americans and their right to live in the community under the Americans with Disabilities Act and the U.S. Supreme Court’s 1999 Olmstead decision. Furthermore, these types of cuts will invariably lead to the lay off or at least the reduction in work for community living paraprofessionals. Ironically, many family members also likely will be forced to reduce their work hours in order to make up for these cuts in services by providing needed assistance to a child, a spouse, a parent or a brother or sister with a significant disability. In other words, such cuts will have a far-reaching domino effect. Further imperiling the human and economic well being of all those involved.

In 2003, when states faced the largest budget deficits since the 1930’s, Congress approved $20 million in aid to them; including $10 billion in the form of a “temporary” increase in the federal Medicaid match (FMAP). While this action came after most states had made deep cuts in Medicaid and other critical services, many experts credit it with averting far more dire cuts and human consequences. In a meeting with the President-elect, the Nation’s Governors stressed that one of the most effective ways to “hasten the recovery” is to fund states to “reduce or avoid cuts in … FMAP…; infrastructure investments that create jobs; and safety net programs that assist people in the greatest need.”

Similar increases in FMAP will be needed to weather this crisis as well. In the past, such increases have been designed to meet the needs of states to extend Medicaid coverage to growing numbers unemployed and uninsured working families. While this will be still necessary to do, emphasis also should be placed on assuring that states have adequate funding to provide and increase the availability and quality of community living services.
The Americans with Disabilities Act and subsequent U.S. Supreme Court’s Olmstead decision require states to take effective steps to prevent and eliminate the unjustified institutionalization and isolation of people with disabilities. For over a decade, states have steadily increased access to Medicaid community living services in order to comply with this vital civil rights obligation. However, the current economic crisis and resulting Solomonic “choices” facing Governors and state legislatures will most certainly stymie, if not reverse, many of these gains. For all of these reasons, therefore, the Obama-Biden recovery package, therefore, needs to be designed to lessen the effects of these types of cyclic problems both now and in times of future economic turmoil.

POLICY OPTION(S): To the extent that states are provided a higher federal Medicaid match (FMAP) – whether on a temporary or permanent basis – such funding could be structured to assure that states which expand community living services in good times are not “left holding the bag” for doing so when the economy declines. This might be done, for example, by rewarding states in one of at least two ways. States that create “rainy day funds” or designated taxes for the specific purpose of expanding community living services during good times and maintaining them in bad times could: (a) receive a slightly increased – e.g., a three to five percentage point higher – FMAP for doing so; and/or, (b) access such funding far earlier during periods of future economic downturns.

In addition to providing a higher match to address the immediate need for states to expand the Medicaid rolls during this recession, consideration also could be given to providing states with a 10 to 15 percent higher FMAP for making certain community living services innovations and enhancements. The higher match could be made available for and gradually phrased out over a 10 to 15 year period, which is patterned after similar provisions in Senator Harkin and Representative Davis’ Community Choice Act (S.799/HR1621) as well as the Money Follows the Person Demonstration Grant Program. This higher FMAP could be used by states for specific activities, including:

· Assessing the unmet needs for such services among persons with the full range of significant disabilities in both institutional and community settings
· Reducing reliance on institutional LTS
· Reducing waiting lists for such services among those in both institutional and community settings
· Demonstrating effective strategies for better coordinating the delivery of primary care and community living services
· Developing and implementing rational cost sharing among public and private insurers
· Phasing in effective financing strategies for managing the woodwork effect or increased demand for community living services over a 10 to 15 year period.

The Obama-Biden Administration and Congress should take advantage of the enormous potential that federal and state Medicaid funding has for creating good paying American jobs that will never be able to be out moved off shore.

Priming the Economic Engine of Medicaid Community Living Service:
A strong symbiotic relationship exists between people with significant disabilities and community living services living services (CLS) paraprofessionals. For their part, such workers play a pivotal role in enhancing the health, independence and economic security of these individuals and their families. On the other hand, these workers are heavily reliant on the relative health of Medicaid and other funding sources for their own livelihoods, personal independence and economic security. Moreover, community living jobs are expected to grow significantly over the next 20 years due in large part to the aging of the baby boom. Indeed, jobs such as personal assistants/home care workers and home health care aides are already the second and third fastest growing occupations in the U.S. economy. Some three million people are employed in these types of positions nationwide. These jobs generate a combined $56 billion in personal income for these workers, who plow most of their wages back into their local economies. The aging of the baby boom – combined with the fact that persons aged 85 years old and over who have the most need for such assistance is the fastest growing age group in America – is projected to lead to the creation of 1.6 million new LTS paraprofessional jobs between 2006-2016 or by 35 percent increase during this period. Indeed, roughly one out of every two jobs created in the entire health care sector during this same timeframe will be those of these types of paraprofessionals.

At present, however, the contributions these paraprofessionals make to people with significant disabilities, families and the common good are only marginally rewarded. In fact, the support these workers offer to assist individuals to eat, dress, go to the bathroom and other everyday necessities are still largely viewed as menial, degrading and the “lowest” form of work that anyone can perform and as a result are compensated accordingly. In fact, 40 percent of these paraprofessionals have been found to live in households that rely on Medicaid, food stamps or similar benefits. Similarly, the vast majority of these workers make under $10 an hour and nearly one third are uninsured. They also lack of stable hours and limited opportunity for advancement, which fuels extremely low morale and high turn over. Factors like these can pit the interests of people with significant disabilities against those of the workers’ they rely on most. Under the worst of scenarios, this can lead such persons to being abused, neglected and having their most basic needs, rights and abilities discounted. Even in the majority of cases, however, when workers are highly committed and support people well, many feel similarly exploited and misused due to the relatively low wages, lack of benefits and others working conditions that they experience. This, in turn, drives high rates of overtime, burn out and staff turn over, further undercutting the quality of the services and supports that they can provide.

The expected cuts in Medicaid services will further exacerbate the situation. As a nation, we are at a moral and economic crossroads with respect to this issue. We can continue to devalue these paraprofessionals or we can value the importance of their labor and those that they support. The policy choice is clear. The development of a highly motivated and growing cadre of committed community living paraprofessionals, who are valued and well compensated for the work they do is essential not just to people with significant disabilities and their families but to the future of the country that we seek to become. It is critical, therefore, that the Obama-Biden Administration include in its recovery plan, targeted strategies to improve the standard of living, working conditions and future prospects of community living paraprofessionals.

POLICY OPTION(S): As part of recovery or other vehicles, the new Administration should strongly consider providing states, localities and other community organizations funding to assist community living paraprofessionals to escape poverty by increasing their standard of living and health benefits; as well as their access to educational, career advancement and affordable housing opportunities. Targeted job and economic development federal funding could be provided and used to:

· Increase wages and benefits for these paraprofessionals.
· Invest in scholarship and loan repayment programs for such workers.
· Leverage the Workforce Investment Act to build and strengthen this workforce.
· Spur the start up of community living services small businesses and cooperatives owned and controlled by such workers, people with significant disabilities and their families.

The funds also could spur public and private sector investments in broader affordable workforce housing strategies that benefit a wide range of low to moderate income public service workers, including nurses, police officers, teachers and community living paraprofessionals. These approaches could yield multiple benefits: Rewarding workers, ensuring greater stability and fewer turnovers as well as increasing the supply of affordable housing.

Additionally, the new Administration could significantly improve the lot of community living paraprofessionals by:

· Extending federal wage and hour protection to all of these workers.
· Establishing minimum standards for these paraprofessionals’ wages and benefits for services, they provide that are paid for Medicaid and other public programs.
· Ensuring that public funds are used in ways that strengthens the stability of this vital work force.

During the campaign, the Obama-Biden team further proposed to:

· Increase the minimum wage
· Expand the use of the EITC by low-income workers
· Create Promise Neighborhoods to provide comprehensive services in impoverished areas in 20 American cities
· Invest $1 billion over five years in transitional jobs and career pathway programs that implement proven methods of helping low-income Americans succeed in the workforce
· Create a Green Jobs Corps to employ disadvantaged youth in energy jobs to in their communities and provide them with valuable skills in a high-growth career field

All of these initiatives have tremendous implications and potential benefits for the community living paraprofessional workforce.

POLICY OPTION(S): The new Administration could design and carry out their anti-poverty and economic development initiatives in ways that consciously advances the rights and interests of both Americans with significant disabilities and community living paraprofessionals. Toward this end, the Promise Neighborhoods initiative could be designed and carried out in a manner that would benefit both groups. This is particularly important to do given the high correlation between disability and poverty among those living in urban and rural America. The same basic principle also applies to any transitional jobs/career pathways initiatives that the new Administration might pursue. For example, an American Livable Communities Corps analogous to the Green Jobs Corps could be created to -- among other things -- provide educational, employment and career advancement opportunities to disadvantaged youth, people with disabilities and others in high growth allied health, human services and community living fields.