PEOPLE WITH DISABILITIES IN BUDGET CRISES: A NEW ROLE

March 8th, 2010

Ethan B. Ellis

We’re broke. The whole damn country’s broke … at every level, from Washington, DC, to small towns, and the states are hardest hit.

Not only are they the primary source of services that their citizens depend on, including those of us with disabilities, they have to deliver them while balancing their budgets. In New Jersey, for example, we have a $9 billion gap in a $27 billion budget. Bridging that gap is a high wire act and somebody’s bound to fall off.

This is all about doing what we can to make sure it isn’t us.

Governors all over the country will be proposing austere budgets this spring. Most of them will include deep cuts in services to people with disabilities. The reflex reaction of our communities, like all the other constituencies cut, will be to rally around to oppose those cuts, in hopes of making others absorb them.

I suggest we resist this reflex. I do so for two reasons: first, because deep cuts must be made, and, while we have an obligation to make sure we’re never put in this position again, right now we have a citizen’s duty to assure that the cuts are made responsibly.

Second and most importantly, we know that most of those programs either don’t work or don’t work as effectively as they should. For example, I will not support a budget that wastes hundreds of millions of dollars keeping people locked up in developmental centers or psychiatric facilities just to keep state workers employed. I will not support a budget that segregates people in group homes who could live more cheaply and richly in more open environments, just to keep a bunch of providers financially afloat. I will not support a budget that does not allow personal assistants to provide the full range of service we need, just to protect the professional prerogatives of RNs or the profits of home health providers.

Instead, I suggest that we go to our governors and state legislators and offer them our expertise in what works and doesn’t work. No one knows that better than we do. If our expertise doesn’t include the capacity to analyze the savings that our recommendations would make, let’s ask the state budget makers to provide us and them with that expertise. It’s a lot cheaper than wasting money on what we don’t want or need and it recognizes our legitimate contributions as responsible citizens.

If they don’t want to listen, then our role as responsible citizens is to take to the streets.

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DISABILITY: A CULTURE? A COMMUNITY? A POLITICAL FORCE?

February 25th, 2010

Ethan B. Ellis

A couple of weeks ago, I was teaching an introductory class on disability to some Rutgers juniors when the instructor raised the inevitable question: “Is there a disability culture?”

“No.” My answer, quick and unequivocal, surprised her as much as it may surprise you, but it’s something I’ve thought about since I first saw the term in the Disability Rag, now the Ragged Edge, 30 years ago. Many may disagree, but here’s my take on it.

People with disabilities are just too diverse to form a culture. We’re geographically dispersed; we don’t speak a common language – heck, we can’t even agree on what to call ourselves; more than half of us get our disabilities in old age and 87% of us became disabled in adulthood; 80% of us are poor and many of us live in isolation or in congregate care facilities where our lives are pretty much controlled by our keepers. Over half of us don’t even identify ourselves as people with disabilities and only about 25% have ever heard of the Americans with Disabilities Act.

That’s not enough glue to stick a stamp on an envelope, much less create a cohesive culture.

I have a similar problem with the term ‘disability community’, though I use it all the time for want of a better one. In theory, it’s meant to be inclusive, to bring people with disabilities, our families, our providers and advocates together under one roof. In practice, it’s more often used to include whoever the user wants it to include, usually to give the impression that the user is speaking for a much larger constituency than s/he actually represents.

How often have you heard someone say: “The disability community wants this or that,” or “the disability community supports him or her,” and thought to yourself, “I don’t agree. They’re not speaking for me.”? I’ve had that experience far too often, particularly when it’s someone without a disability putting words in my mouth that don’t taste right, that I want to spit out.

Unfortunately, it happens most often when public policies that affect us are being decided and lobbied for in Washington, DC, Trenton, NJ or other state capitals and we haven’t even been consulted about them. I’ve paid my dues to any number of state and national disability organizations over the last three plus decades and none of them have ever asked me or other people with disabilities what we thought about an issue before they took a position on it, even though many of their offices are papered over with ‘Nothing About Us Without Us’ posters and their brochures describe them as “grassroots” organizations.

Debates about disability culture and the careless use of terms like the ‘disability community often deflect us from our most urgent mission: to create a legitimate and powerful voice for people with disabilities that commands attention in the local, state and national political dialogues.

For three years now, Next Step has been trying to turn the current policy-making process on its head, to become at bottoms-up, not top-down, voice for people with disabilities. In that time, we’ve learned how hard it is to create a way to make that voice legitimate and amplify it so the people who make decisions about us not only hear it, but are compelled to listen to it.

On March 19th and 20th, we’re holding a membership retreat to see how we’re doing and how we can do it better. It will be at the New Brunswick, NJ Hyatt.

We’ve already taken some steps to prepare for the decisions that will be made at the retreat. We’ve doubled our fundraising and grant writing staff, we’ve hired our first community organizer to develop and support local affiliates, we’re redesigning our website to make it truly interactive so more of you can have a voice in creating the platform that will determine Next Step’s priorities and monitor how we’re doing to accomplish its objectives.

If you want to contribute your ideas to this process, email me at ethan@gonextstep.org .
If you’re in the area and want to attend, contact Mary Scibelli at mary@gonextstep.org for details. It’ll only cost you the price of an annual membership, $25 max.

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SOME OF US WILL DIE

February 17th, 2010

Ethan B. Ellis

Last week, New Jersey Governor Chris Christie announced $2.2 billion in additional cuts in the state budget that ends on June 30 this year. The cuts are the immediate result of a shortfall in state tax revenues, due of the recession, but also reflect structural flaws in the state’s budget-making process. Both will lead to problems in next year’s budget, beginning July 1, which already has a projected $9 to $11 billion dollar deficit. That is about a third of the total.

New Jersey is not alone. The Center for Budget and Public Policy estimates that 41 states must fill current budget holes amounting to $35.5 billion by June 30 and 48 states face deficits of $180 billion as they start making their budgets for next year.

The biggest chunk of any state budget goes to provide the human services that people with disabilities and other poor people need to survive, a lot of them funded through Medicaid, the fastest growing part of state expenditures. States are already cutting back on these services and will have to cut back on them much more next year.

This budgetary mumbo-jumbo is so complicated and the dollars involved are so enormous that it’s hard to make sense of them. Let me try.

Medicaid pays for all kinds of health care services that poor people, including most of us, use. Most of them are mandated, but a lot are optional – if the state decides not to pay for them, we don’t get them.

Medicaid also pays for specific disability services like personal assistance and durable medical equipment. It also pays for a wide range of supports that enable people with traumatic brain injuries and developmental disabilities and seniors to live in the community, instead of going to nursing homes or other institutions.

These are prime targets for the budget-cutting axe. In New Jersey, for example, no more people will leave developmental centers or get off waiting lists until the budget crisis is over. That could be two or three years from now.

Across the country, tens of thousands of people with disabilities already die needlessly every year because they can’t get medical care or because the care they get is inadequate. They are our friends and relatives who can’t get health insurance because pre-existing conditions disqualify them or make the insurance cost more than they can afford. That’s now.

Many more of us will die because of cuts this year and next year. The supports we depend on to stay alive just won’t be there. Other people, who are poor, like most of us, will die, too. It’s unavoidable.

Or is it?

Think about it. Tens of thousands of Americans will die from lack of money while we pour hundreds of billions of dollars into wars we don’t need to and should not fight. Tens of thousands of Americans will die because of tax laws that allow one percent of us to own 40% of the country while more than half of us get poorer and poorer, not just people who have always been poor, but people who used to think of themselves as middleclass, but have seen their income shrink, have lost their homes and seen their life-savings disappear.

That is not the America I grew up in. That is not the America I want my four year-old to know when he grows up. It does not have to be. If we unite to change the fundamental political and economic structure of this country, we can all live in it with pride as equals, not by dividing the pie in absolutely equal pieces, but by closing the gap between rich and poor that kills so many of us every year.

Is there a choice?

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SNOW IS A 504 VIOLATION – THE VIEW FROM NJ

February 10th, 2010

Ethan B. Ellis

As I sit here at my computer in suburban New Jersey, I can see the snow filling up our back yard. As much as three inches is stacked up on the rhododendron next to the house and on tree branches sheltered from the wind. There’s four times as much in the yard … and in the driveway. It’s mostly a grim black and white now but it will dazzle with color and beauty tomorrow when the morning-after sun hits it.

It’s a good thing, too because Janet and I aren’t going anywhere on our scooters, not ‘til after the roads are plowed, not ‘til after the snow guy snow-blows the driveway and the ramp and clears the windows on the van. We’re marooned in our own home, crips incarcerated.

When we join our less fortunate brothers and sisters on the streets (and I’m acutely aware of how fortunate we are), we’ll all confront unshoveled sidewalks and driveways, snow-packed curb-cuts and reserved parking spaces plowed full of snow so able-bodied drivers don’t have to walk so far. But we’ll wake up to the real nightmare the next day – ice, the melted snow that froze while we slept – just waiting to break the bones of those of us who can walk a little.

Snow is a 504 violation. I began saying that in the late1970s when I first became aware of Title V of the Rehab Act that forbade discrimination against us by the federal government and organizations it funded. I’d follow up by saying, “… if I could only find a court to file a complaint in and a lawyer to take the case.”

That’s how I feel about the Americans with Disabilities Act today. As we approach its 20th birthday this July, I’m keenly aware that it hasn’t lived up to the promise many of us invested in it when we worked so hard for its passage all those years ago.

Sure, it has led to many changes in the built environment and increased employers’ understanding that they have to hire those of us who ‘are otherwise qualified,’ if not their willingness to do so. Those are good things and many of us have benefited from them.

But as an enforcement tool to protect those whose rights under it are still violated, it stinks.

Its complaint procedures are too cumbersome and complex to be used by the vast majority of people with disabilities, whom this country has failed to educate. The U.S. Justice Department and the other federal agencies charged with enforcing it are so understaffed and under-funded that complaints back up by the tens of thousands and take years to settle, often so long that the damage done is beyond repair.

It’s not worth it for most private attorneys to take such cases unless paid in advance and publicly funded attorneys are so few that they have impossibly long waiting lists or turn away anyone who doesn’t have a case likely to set a precedent or otherwise attract attention to them or the agencies they work for.

In short, it’s a rich man’s law that’s supposed to protect people who are mostly poor.

That’s not so surprising when you think about it. We live in a country in which government increasingly serves the rich at the expense of the poor and even its middleclass, once the backbone of its economic prosperity. So, is it so surprising that the laws it makes serve them, too?

As long as the gap between rich and poor continues to grow, as it has for forty years, our rights and our ability to enforce them will continue to shrink. A mere change in the laws will not change that. Until we shrink that gap considerably, justice for the poor, including people with disabilities, and even the middleclass will be sporadic and accidental.

When we shrink that gap, we will win our human rights and make our civil rights meaningful, not the other way around. Shrinking the gap between rich and poor must become the primary goal for all of us who work for social and economic justice. It is the only way we can achieve it.

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THE ‘R’ WORD AND MR. BOOGALOO

February 8th, 2010

Ethan B. Ellis

Recently, Rahm Emanuel and Rush Limbaugh have focused attention on a campaign by people with developmental disabilities and their supporters to remove the words ‘mental retardation’ and its derivatives from the American lexicon and replace them with ‘cognitive’ or ‘intellectual’ disabilities.

Both Rahm and Rush, unlikely collaborators from opposite ends of America’s political spectrum, unwittingly boosted the campaign to national prominence by using its most pejorative form, ‘retards’ in the same week. Typical of their individual political styles, Rahm invited some of Washington’s disability elite to the White House to witness his signing of the Special Olympians’ pledge to eradicate the word, while Rush tried to bluster his way though his faux pas by repeating it over and over again on his next show.

I support the campaign wholeheartedly. It brings back memories of being stared at by strangers because of my spastic walk and hearing mothers shush their kids when they asked; “What’s wrong with that man.” I can only imagines what it’s like to b called ‘retard’ everywhere you go.

There’s another reason, though. I strongly believe that every oppressed group has the right to define themselves, not be labeled by those who oppress or study them, often the same people. It’s s lesson I learned in the mid-1960s when I worked in the poverty program on Manhattan’s Lower East Side and lived in a predominately African-American working-class high-rise condo on East 110th Street and Second Avenue at the beginning of the “Black is beautiful” awakening.

We had a bunch of people from the building over to party one night. Doris, our next-door neighbor, made a dramatic entrance, wearing a stunning black dress that perfectly complimented her natural beauty. We were busy praising both, when a voice boomed out from the easy chair in the corner: “She can’t be beautiful; she’s too black!”

It was Mr. Boogaloo, one of our least-favorite neighbors, a guy who could smell a party anywhere in the building and invited himself in, welcome or not. We called him Mr. Boogaloo, after the flashy but shallow dance briefly popular at the time. He fit the image perfectly, dressed in a tan plaid bell-bottomed polyester suit that matched his light skin.

We all fell silent as Doris began to sob. Then the women rushed to comfort her as Mr. Boogaloo slid out the door.

Names hurt. I learned that lessen that night and never forgot it or Mr. Boogaloo who taught it so callously.

The ‘R’ word campaign is not new. Bill Byrne introduced me to it in the 1980s. At the time he led a one-man campaign to change the Association of Retarded Citizens to the Arc. He showed up at every meeting and conference around the state with his sandwich-board sign and leaflets and buttons and buttonholed everyone with his message, whether they wanted to hear it or not. Enough did so that, one by one, local chapters began to change their names. Soon, he became the state’s most famous self-advocate and converts provided him with a national platform and within a few years the countrywide association became Arc/USA.

I have no doubt that Bill’s successors will win this battle. The stars are aligned and the time has come. The time has also come to convert the energy that it will take to win this important symbolic battle into a permanent political presence. Brothers and sisters with cognitive disabilities, I solute you, I support you and I look forward to joining you in our ongoing struggle to live with pride as equals in this society.

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CHRIS CHRISTIE, COAST TO COAST

February 5th, 2010

Ethan B. Ellis
This blogging business is full of surprises, especially for an old codger like me who still confuses RSS feeds with rusty feet.

Last week, I got an email from a California blogger who said she writes about disability from a Republican perspective. She very respectfully asked if she could interview me to get a non-partisan view of what the election of our new governor, Chris Christie, might portend for people with disabilities in New Jersey.

One of the pleasures of conversation on the Internet is that you have time to reflect on complicated decisions without revealing the pauses that can make real-time encounters awkward. And I definitely wanted to think this one over.

She was technically correct about my non-partisanship – I don’t think the leadership of either party pays much attention to people with disabilities during elections and even less between them. On the other hand, my politics put me on the other end of the political spectrum from where I supposed she would be. On the third hand, I’m as curious as a cat and many of my friends have remarked that I must have as many lives, so I decided to give it a go.

In her email, she said she’d send me a list of questions, which I could take as much liberty with as I liked. When it arrived, I answered each one very directly, wondering, as I wrote, if and how she would mesh my thoughts with hers.

Tonight she emailed me a large chunk of her blog and asked that I verify the quotes she had attributed to me. They were accurate, of course, but they were imbedded in a text that almost exactly paralleled mine. We agreed that, so far as disability is concerned, Christie wouldn’t’ have to do much to outshine his predecessors; we agreed that he had the opportunity to do a great deal more; we even agreed that whatever he did was unlikely to be enough.

Astonished, I wanted to know more about this astonishing lady. Sure enough, she blogs for Frumforum.com , which is filled with blogs by the people I argue with on my TV screen every night.

Stories by Dana Commandatore is something else entirely. What she writes is tough, compassionate and moving, but carries a message that the most hardened disability activist couldn’t quarrel with. A Los Angeles advertising executive, she has a child with autism and a website where she takes on the misleading and harmfully frightening myths that have grown up around that disability as well as the organizations and spokespersons who purvey them. She believes that advocates with autism can and should speak for themselves and supports my colleague and fellow New Jerseyan, Ari Ne’eman, who has done so with sufficient success to be nominated to the National Council on Disabilities by President Obama, the arch enemy of many of other bloggers she appears with.

I urge you to visit her blog today (and any other day, for that matter) and read about how New Jersey’s new governor looks from the other coast. It’s a pleasure to add some details to that picture and I look forward to welcoming Dana Commandatore to this blog early and often.

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CHRISTIE AND DISABILITIES – FIRST CLUES

January 27th, 2010

Ethan B. Ellis

People with disabilities in New Jersey are a step closer to knowing what the next four to eight years will mean to them under Governor Chris Christie. His office has recently released the report of his Transition Team on the Departments of Human Services and Children and Families.

The report begins with a compact but comprehensive description of the two departments and their divisions and offices, along with the staffing and budget for each. You may want to hold onto it. It’s the best I’ve seen in 43 years of studying NJ government from inside and out.

Among its many recommendations, three are especially significant impact for people with disabilities:

Consider closing New Lisbon and Woodbridge Developmental Centers and using the savings to add community supports for people with developmental disabilities who have been waiting for them.

Merge the Division of Disability Services, which primarily serves those who acquire their disabilities in adulthood, with the Division of Developmental Disabilities.

Transfer services for senior citizens from the Department of Health and Senior Services to the Department of Human Services.

On their face, all three are progressive, representing cutting-edge thinking in their fields. New Jersey trails all but two other states in moving people out of developmental centers who can live in the community. It is being sued for violating the Supreme Court’s ten-year-old Olmstead decision mandating that people with disabilities live in the least restrictive settings possible. Also, the U.S. Justice Department has sanctioned New Lisbon and Woodbridge for several unwarranted deaths as well as thousands of cases of broken bones and other serious injuries suffered by their residents, some within the last year.

The other two recommendations reflect our growing understanding that it is more efficient, effective and equitable to organize supports by functional need, not diagnosis or age. Two people with quadriplegia have similar needs, whether it is due to cerebral palsy or a spinal cord injury and should be eligible for similar services. By the same logic, someone with Alzheimer’s disease and someone with Down syndrome with the same needs should have access to the same supports.

Combining the two divisions will make it easier to operationalize that understanding. So will moving senior services to the department, since 75% of people over 70 have a disability and all can use the same generic social services.

I have only one serious quarrel with the recommendations. The report assumes that all developmental center residents will need to live in group homes. This runs counter to our experience in closing North Princeton Developmental Center. Many of its former residents are flourishing in less restrictive settings costing much less than group homes. Several states have begun to dismantle their group home systems as being overly restrictive. After all, would you really like to spend your life with three people someone else chose for you?

In all things governmental the devil is in the details, political, financial and bureaucratic. The governor will run into opposition from unions and a dwindling number of families when he closes New Lisbon and Woodbridge. Advocates and providers who have won more than their fair share of resources for their constituents will not share them happily with those who have less. Bureaucrats will protect what they have, deserved or not.

The Transition Team also had some biases of its own. In order to assemble enough expertise, the governor had to appoint those who work in the field, some of whom have their own special interests to protect. For example, that may be the genesis of the recommendation to move everyone leaving the developmental centers into group homes.

Finally, there is the overhanging shadow of the state’s massive structural deficit, which the Transition Team was in no position to resolve. While some of its recommendations will reduce costs significantly, they will not begin to fill the hole that Christie inherits. More cuts are inevitable. How people with disabilities survive them will depend on two things: how severe they are and whether they are administered with heart or meat-axe in hand.

The report is more than we might have hoped for in these troubled times. Stay tuned.

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OPEN LETTER TO PRESIDENT OBAMA: GIVE US OUR MONEY BACK

January 24th, 2010

Ethan B. Ellis

You fooled me. I wanted change so much that I believed that you were different, that you would keep your promises. You haven’t, so give me my money back.

I call on everybody who gave to your campaign and also feels let down to demand their money back, too. When enough of us do, you’ll remember those promises and start to keep them. If not, there’s always 2012.

Here’s the story of my disillusionment. When you hear enough others, you’ll begin to realize that you have to dance with those of us that brung you or the dance is over.

I made the $10 and $20 contributions whenever I could, bought a new tee-shirt whenever a one came out, even got one for my little boy so he could tell his children and grandchildren: “I was there!” when they are growing up. I joined your disability advisory committee, long before most of its other members did. I didn’t want anything ‘special’ for those of us with disabilities, just the things you promised everybody else.

I wanted peace so we could stop wasting our money on the dead and deadly dream of American empire and on killing and disabling more young Americans; instead I got the expansion of the unwinable war in Afghanistan, “graveyard of empires.”

I wanted health care for all because people with disabilities would benefit most from a fair system that doesn’t penalize pre-existing conditions, raise rates or cancel policies when illness or disability strike, a system that costs less and limits the profits of the medical/industrial complex to a reasonable return on investment. Instead, you have sold out to that complex at every opportunity, even creating some of you own.

I wanted to reduce the gap between rich and poor, which is larger in this country than in any other industrialized nation. I wanted that because compelling research proves that that gap is the major cause of most of our social ills, including ranking 37th in wellness. Your promise to sunset the Bush tax giveaways to his billionaire friends would have started to close the gap. Instead, I got bank bailouts that made your Wall Street campaign donors richer at the expense of the poor and middleclass. Instead, you wanted them to pay for health care reform by taxing their benefits, rather than taxing the richest Americans, whose wealth has increased seven-fold in the last thirty years.

I wanted the change you promised to bring to government, a change that would reduce the influence of money and amplify the voices of ordinary citizens, a change that would open government to transparency and bring our democracy back from the brink of inverted totalitarianism. [link to ] Instead, I got secret deals between the Wall Street wolves you appointed to guard our financial henhouse and their old buddies; I got your $400 million bribes to Senators; I got expenditures of $1.4 million a day by the medical/industrial complex that bought even more votes than you did and blanketed the airways with so much misinformation (read ‘lies’) that they cut public support for health care reform from 74% last August to 39% today. Those back-room deals and your failure to lead has raised the price of the best government money can buy so high that us ordinary citizens can’t even buy back a tiny piece of what we’re supposed to own outright.

You may wonder why a76 year-old man with a disability spends his time on these grave, complex matters of public policy, instead of sucking his thumb because you didn’t give him his Social Security cost of living increase. Let me tell you why.

Every dollar you waste in war is a dollar not spent in upgrading our infrastructure, re-building accessible streets and sidewalks, improving mass transit, creating accessible, affordable housing, removing barriers to our employment. Every month you let go by without real health care reform costs us thousands of friends who wouldn’t have died otherwise. Every time the gap between rich and poor widens, most of us get poorer because we are poor already; our health declines; so does our longevity; more of us are victims of prejudice, discrimination and violence; and on and on. Every time you hold on to the unconstitutional powers your predecessor seized and you promised to give up but haven’t, our freedoms are threatened and our chances to live with pride as equals in a just society are set back.

Yes, you fooled us. Give us our money back and start keeping those promises that caused us togive it so willingly in the first place. Then maybe, just maybe, we’ll be there when you need us again.

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DISABILITY:THE HIDDEN HORROR OF HAITI…AND WHAT WE CAN DO ABOUT IT

January 20th, 2010

Ethan B. Ellis

Those of us with disabilities, like the rest of the watching world, have been horrified by the images of death, misery and physical destruction that have rolled off our TV and computer screens continually from Haiti for the last week. Like so many, we have shut them out, unable to stand the sight of another twisted body strewn in the street or tossed on a barricade as hopelessness turns to anger, unable to listen to the cries of another bandaged child torn forever from a family dead under unmoved rubble.

But, like the rest of the watching world, we are prompted to act, to do something, to give something that will connect us with that awful human suffering, but dull the pain of that connection. We must do something now, even though we know that supplies are piling up at the tiny Port au Prince airport because they can’t be trucked to those who will starve without them, even though other people’s money is pouring in so fast that many NGOs can’t count it, much less coordinate its use.

Those of us with disabilities who know the island also know that after the last body is buried, the last hospital is rebuilt and the country begins to come alive again as its rescuers move on to the next disaster and the eyes of the watching world move with them, that people like us, now multiplied by the earthquake’s crush will be buried under the crushing weight of the country’s other unmet priories.

Those of us at Next Step who know the island also know that the people like us will be left to die or survive as beggars unless somebody does something and that we are in the best, or the least worst position to do it. We also know that doing something will require a long-term commitment and a lot of guidance and support from those who know Haiti and its people better than we do.

As a first step we have created a donation page. We chose Partners In Health (PIH) for several reasons: it shares Next Step’s values and commitment to social justice and human rights; it has been working in Haiti for more than two decades; and it has been selected by the United Nations to coordinate all hospital operations in Haiti during the earthquake emergency. Before that emergency ends, we will ask PIH for its ongoing guidance and support for Next Step’s long-term commitment there.

Right now, please visit the Next Step donation page and give whatever you can

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LONG-TERM CARE: PLAYING IN THE MAINSTREAM OF AMERICAN POLITICS

January 15th, 2010

Ethan B. Ellis

Tom Nerney, a pioneer in the DD community, once said that debates over policy aren’t won with statistics, but they sure are helpful when its time to implement the policy that won. While Tom was right, data often help me sort out my thinking on important issues. They fill holes in the big picture I might stumble over otherwise.

That’s why I look forward to Steve Gold’s analyses of long-term care for people with disabilities. Recently, he’s issued three Information Bulletins (#296, 297 and 298) in rapid fire. Each compares how states divide Medicaid money for long-term care between institutional and community supports for different groups of people with disabilities.

In #296, he compares state expenditures for institutional versus community services for people who are old or have physical disabilities; in #297, he does the same for people with developmental disabilities; in #298, he compares one against the other. His findings are provocative; so are the questions they raise.

I’ll spare you most of the numbers, but here are a few that caught my eye:

Two-thirds of the $104 billion we spend on Medicaid long-term care goes to people who are old or have physical disabilities; one third goes to people with developmental disabilities;

64.5% of what we spend on people with developmental disabilities goes for community services, 35.5% for institutions;

Only 31.6% spent on people who were old or had physical disabilities goes for community services, 68.4% for institutions, almost the exact opposite.

Steve asked why the differences. Here are some likely answers.

First, the DD community is the oldest and strongest of all the disability advocacy groups. It was started in the late 1940s and early 1950s by parents who have always had more resources to lobby decision-makers with than people with disabilities did. They also have had more credibility with those decision-makers simply because they look and walk and talk more like them than we do.

Second, that community has been united under one banner, that of developmental disabilities, created by Elizabeth Boggs and Elsie Helsel for exactly that purpose. People with disabilities have taken longer to unite. The differences in our disabilities make us more heterogeneous than our families and that heterogeneity makes it harder to establish common goals, especially if we were first organized by people without disabilities, who made their living serving us separately.

Third, the nursing home industry has more economic and political clout in Washington than do the declining numbers of parents and union members who want to keep developmental centers open. The economic stakes for nursing home owners are considerably higher.

Fourth, people in nursing homes are more diverse than most think. While seniors make up the majority of residents, there are also many younger people with physical and developmental disabilities in them, the first thought to be incapable of living anywhere else because of the severity of their disabilities, the second, because they didn’t fit neatly into community programs when their developmental centers were closed. Both were wasting away until ADAPT began to free them through direct action and creative legislative advocacy.

Fifth, the concept that older people who are disabled or ill can live in the community is much newer than the counterpart call for community supports from disability advocates. It is new to their families and to the general public and, until recently, has had little support from the organized senior citizen community.

The nation is now at a turning point in how it will spend its long-term care dollars. Seniors, who have always wanted to live out their ‘golden years’ in their own homes, are saying so more loudly, just as people with disabilities have been doing for so long.

The health care debate has made it clear that institutionalization is several times more expensive than community supports and usually unnecessary and wasteful. ADAPT, long viewed as too radical in its tactics, has demonstrated the success of those tactics and become a leader in developing a legislative agenda for long-term care that has united other disability groups and seniors.

On the other hand, that agenda has been overshadowed in the health care debate by the efforts of the medical/industrial complex to protect its money-making machine at the expense of this country’s health and solvency. Many who support the status quo in long-term care are part of that complex and are working hard to keep that agenda buried.

At this time, it seems likely that the health care battle will result in a draw: President Obama will get a bill to sign; it will not solve the basic problems of escalating medical expenses and lack of insurance for many Americans; and those issues will have to be dealt with again soon.

If that draw teaches us anything, it should teach us that people with disabilities must develop political power commensurate with our numbers. We’re a fifth of this country’s population and we must use the power inherent in those numbers when the battle over health care breaks out again. We say we want to be in the mainstream and that means playing mainstream politics.

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