The March 11-12 Next Step Membership Retreat will be postponed until further notice. Please call (732) 738-4388 for more information.
Do you live in NJ? Use a mobility device
February 25, 2011Do you live in NJ? Use a mobility device? ThisAbled is looking for individuals who have experienced accessibility issues on Rt 1. Contact ThisAbled here: http://www.thisabled.com/contact/contact-us.php
“Have I Done Enough?”
February 22, 2011by: Ethan B. Ellis
In January, I wrote a blog titled The Coming Conflict between the Haves and Have-nots…And What That Has to Do with People with Disabilities. In it, I wrote about the gap between rich and poor, how that gap was linked to so many social problems in this country and despaired of seeing that gap shrunk without a revolution because most of the levers of power are in the hands of those who benefit from it. I asked whether the middle-class liberals who decry this state of affairs were willing risk their comfortable lives to participate in that revolution.
Some have asked whether Next Step is a disability advocate or a poverty activist organization. Given how poor most people with disabilities are, I think we have no choice but to be both. Two recent events confirm that belief.
Yesterday Desiree commented on the blog in part as follows:
I’m at the point where either I’m going to fight or I’m going to end up on the streets…. This isn’t right – but it’s what’s GOING to happen because the nation sacrificed me and countless others to disability rather than paying for functional health care or a functional safety net that uses a realistic measure of poverty….
For example, out of an income that’s a whopping 25% over the Federal Poverty Line, I’m supposed to pay HALF my income as a “Medicaid Spend Down”. HALF. Reality already requires that I spend HALF my income (not 1/3) as rent as the FPL thinks I should. I’ve looked all over the country for a non-subsidized home for the $389/mo apartment that is the cut-off under welfare program guidelines thanks to the FPL. It doesn’t exist. And this is all on top of about $100/mo out of pocket medical expenses for a service dog and required (prescribed) supplements. Am I supposed to be able to print my own money? The math doesn’t work on my end of things.
Two weeks ago, Doreen’s 19 year-old son, whose brain was severely damaged due to chicken pox as a baby, choked to death in his mother’s arms because the Medicaid doctor wouldn’t see him. His mother, our personal assistant and friend, wept as she described how she carried him into the doctor’s office on a stretcher, only to be turned away by the nurse who forgot to put his appointment in her computer and claimed he wasn’t an emergency. “You’ll have to make another appointment,” she said.
I responded to Desiree:
“I have read your comment three times, slept on it and still have no adequate response. You illustrate all I have said and yet you are no illustration; you’re a flesh and blood human being driven to the edge of existence by an uncaring society. Given a few different circumstances, yours could be my story and yet I cannot even comfort you adequately, let alone assist you materially.
I cannot do enough. Please stay in touch. Sadly being here is all I have to offer.”
Janet and I could at least hold Doreen as she wept, inadequate as that was.
After Doreen left, Janet reminded me that half the clients she sees as a clinician at the community mental health center come to her with disabled bodies as well as troubled minds or with minds troubled by children like Doreen’s boy who are as desperately in need of care that isn’t there.
When what I write about in these blogs becomes flesh and confronts me, I wonder if I, if any of us, can ever do enough as long as unnecessary human misery exists.
What is the longest you have waited to have your DME repaired?
February 10, 2011What is the longest you have waited to have DME(Durable Medical Equipment) repaired? Tell us on Ethan Ellis’ Blog! https://gonextstep.wordpress.com/
Christmas Questions
December 28, 2010by: Ethan B. Ellis
It’s been a good Christmas at the little red house on Logan Lane. Janet and I got to bed around 2:30 a.m. after completing the late night wrapping ritual (mostly Janet – I buy, she wraps). Ethan James woke us at 6:30 on the dot exactly as promised – not bad for a boy nine days shy of his fifth birthday. We emptied our stockings in record time – his was full of small toys and large candies, Janet’s with an assortment of gadgets, topped off with Hershey’s kisses, mine mostly with blues and Bob Dylan CDs.
Through skillful negotiation (“Please, Mom, can I open just one more?), Ethan James managed to delay breakfast until more than half the presents were unwrapped. After we ate, I headed for bed for a long winter’s nap and all followed.
Now a telltale trail of paper scraps, ribbons and tape that evaded the garbage bag attest that all presents have been opened. Ethan James is shifting between the the tabletop digs where he’s excavating plastic dinosaur bones with hammer and chisel and watching Toy Story 3 on our bedroom TV with his ‘work’ googles pushed back on top of his head (yes, he says, “I’m going back to work when the shift changes”).
Pro basketball just pre-empted C-SPAN 2’s Book TV, so I’ve resorted reading blogs on the iMac. The first I see is Many Americans Face Poverty and Hardship During the Holiday by CBPP’s LaDonna Pavetti. This catches my attention:
1.6 million people were homeless in 2009 and spent at least part of the year in a shelter; nearly 325,000 of them were children.
15 million people were unemployed as of November, 6 million of whom had been looking for work for more than half a year.
44 million people were poor in 2009, 19 million of whom had incomes below half of the poverty line (half of the poverty line corresponds to an income of $5,478 for an individual and $10,977 for a family of four).
50 million people lived in households that lacked access to adequate food at some point in 2009 because they did not have enough money for groceries. Nearly 18 million people lived in households where one or more people had to skip meals or take other steps to reduce their food intake because of lack of resources.
I shiver when I read it. By the law of averages, the Ellis family, with two adults with disabilities, should fall into some of these categories. The image of little Ethan hungry, homeless or in a shelter is too horrible to contemplate for more than an instant. And yet that image is all too real for many Americans with disabilities, most of whom live just above or below the poverty line, particularly if they are also people of color, already poor and more likely to have disabilities as a result.
It is far safer to wonder how many there might be than to imagine us among them…so that is what I do.
My next reaction is anger, no, rage. Growing up,I was taught, beginning when I was only a little older than Ethan James, that this was the land of democracy, opportunity, equality and plenty. How could our leaders, most of whom are millionaires several times over, allow one sixth of all Americans to be so poor that they often do not have enough to eat?
Of course, I know the answers. Money has so corrupted our politics that we no longer live in a democracy. Our politicians are so rich that they can no longer imagine how the rest of us live, if they ever knew.
They have let our public education disintegrate so far that the smart young grad students I meet today have never been exposed to our history, the basic principles on which this country was founded, the way our government was designed to work, basic things I learned in high school. (While the reasons are more complex, it is no coincidence that the dumming down of America began at the same time that money began to errode our democracy.)
Students today are being robbed of their citizenship, brainwashed as surely as the students in twentieth century totalitarian dictatorships were brainwashed.
Will that be the future of that bright little boy of ours who wants to know the why of everything? Do I have the time left to teach him what my father taught me, more by example than by words, that justice is a precious, fragile thing, that one has an obligation to preserve it whatever the personal risk? Will he know me long enough to remember that as I have?
As these questions race through my head without answers, Ethan James reappears from the bedroom with some books in his hands: “Daddy, will you read these to me?”
Posted by Ethan Ellis