JFActivist

Harvard Medical Professor and Wheel-Chair User Gives Perspective on Heath Care Reform

From the New Republic (9/14/09):

The Truth About Disabilities and Health Reform
by Harold Pollack

[Lisa] Iezzoni, MD is Professor of Medicine at Harvard Medical School and Director of the Institute for Health Policy. Among her areas of expertise is “risk adjustment”--an arcane-sounding term which basically entails looking at how much it costs to take care of people in different states of health, and then adjusting payments (to doctors, to hospital, to insurers) based on that.

But it’s her personal expertise that makes her particularly well-suited to talk about health care and disabilities. She is not only a doctor; she’s also a wheelchair user. A book she co-authored, More Than Ramps, provides policymakers and clinicians with nuts-and-bolts advice about how to improve health care quality and access for people with disabilities...

Pollack:  Let’s shift to the surveys you've conducted with women and men, mostly women, diagnosed with multiple sclerosis. More than 90 percent actually had health insurance.

Iezzoni:  Yes. 96 percent had some form of health insurance. People with MS have two things going for them. Number one, many were formally employed, and so they have paid into the Medicare trust fund sufficiently to get SSDI. MS is one of those list conditions. So--assuming there's a medical record and documentation is up to stuff--people with MS typically do get SSDI. Second, people with MS have a fairly high rate of being married. So they can get spousal health insurance if their spouse is working.

If you dig a little bit deeper under our results, about a quarter of our insured respondents still were splitting pills, delaying medical care, feeling like they didn't enough money for basic necessities because of medical care. It’s the old issue of underinsurance. It really is an undercurrent for this population, especially where some of the drugs can cost upwards of $20,000 or $30,000 a year.

Pollack:  The leading bills moving through Congress repeal lifetime caps and include related provisions. Would these ensure that people would be liberated from these kinds of anxieties?

Iezzoni:  I think that the very first thing that removes anxiety from people is the prohibition against denial based on your health status. That is just a terrifying thing. I'm a professor of medicine at Harvard Medical School. I am afraid that if I lose my job I will lose my health insurance because nobody would ever insure me again. And for somebody like me to feel that way, think of how other people who do not have the connections I have must feel...

...Pollack:  Your last comments point out either the irony or the grotesqueness in the current public debate, in which critics of health reform are attempting to argue that the elderly and the disabled who would be the most disadvantaged by this legislation. Many of the 615 pages that we've discussed are provisions that are intended to provide new services or improved services to these very populations.

Iezzoni:  Absolutely. I believe that. I think that is truly the intent of these senators who passed this bill.

>>> For the Whole Article

Disability Leaders Meet with Attorney General

Disability Leaders Meet with Attorney General
by Andrew Imparato, AAPD President and CEO

Last week, nine representatives from the disability community met with Attorney General Eric Holder at the U.S. Department of Justice to go over our priorities for the Department under his leadership.  The meeting was a follow-up to the brief meeting that the Attorney General, President Obama, and Secretary of Labor Solis had with disability community representatives at the White House on July 24.  At the meeting last week, the disability advocates divided our priorities into three broad categories:

1)    Leadership role of the Attorney General;
2)    Enforcement priorities; and
3)    Access to justice issues.

Under the first category, we brought up the importance of the Attorney General using his bully pulpit to frame disability issues as civil rights and human rights issues at their core.  Whether talking about the UN Convention on the Rights of Persons with Disabilities, access to communications and information technology, or the ability to live outside an institution, the Attorney General has the ability to help the public understand how discrimination against people with disabilities is morally and legally linked to other forms of discrimination and should not be tolerated in this country or around the world.  Also under this agenda item, we mentioned the importance of greater consistency across the Department of Justice on disability rights issues, specifically referencing the issue of the Civil Division, Antitrust Division, or the Office of the Solicitor General sometimes taking positions in cases involving disabled people that are not consistent with the positions taken by the Civil Rights Division.  Finally, we touched on the importance of the Department of Justice leading by example in its approach to the recruitment and retention of workers with disabilities, noting the DOJ is currently the second worst cabinet agency in the percentage of workers with targeted disabilities according to the latest statistics from the EEOC.

Under the second category, we described the importance of a reinvigorated approach to enforcement of ADA and other civil rights laws protecting children and adults with disabilities, explicitly referencing the need for stronger enforcement of the right to community integration under the Olmstead v. L.C. Supreme Court decision and the need to shift departmental priorities from creating better institutions to creating community services for people with disabilities.  On this point, we asked for DOJ to assert the kind of strong leadership role that it did historically in the area of school desegregation.  We also discussed stronger enforcement of the right to equal access to information and communication technology under section 508 of the Rehabilitation Act, the ADA, and other laws; the right to be free of abuse and neglect under multiple laws; and the right to vote privately and independently under the Help America Vote Act.

Under the third category, we emphasized the need for stronger leadership from the Department of Justice that will improve the interactions between law enforcement and the criminal and civil legal system and people with disabilities.  We described the ongoing challenges many people with disabilities have in their interactions with law enforcement and corrections personnel who have not been adequately trained in how to interact appropriately with people who are deaf or have a hearing loss, people with epilepsy, people with psychiatric disabilities, and other disability groups.  We noted the problems many law students and lawyers have in getting accommodations on the LSAT, in law school, on the bar exam, and in the legal profession.  We emphasized the problems that our community has experienced with federal judges who have misinterpreted the ADA and other disability laws, and the need to have disability records more carefully vetted as part of the judicial nomination selection process.  On this last point, we offered to work with the Administration to identify strong candidates for judicial nominations from the disability community.

We closed by thanking the Attorney General for his willingness to serve as a disability rights champion within the Administration, and suggesting the value of him appointing a senior level adviser on disability issues who would work out of his office and ensure greater consistency and coordination around disability law and policy issues across the Department.  During our discussion of this potential new position, we acknowledged the important work of the Disability Rights Section within the Department’s Civil Rights Division in understanding and addressing our issues, but pointed out that this one department could not be solely responsible for all issues related to the integration and civil rights of people with disabilities, which had to be incorporated into practice and policy across all the divisions of DOJ.  The Attorney General expressed a desire to have regular meetings to check-in on the Department’s progress, and thanked the advocates for our time and ideas.  Overall, the disability advocates in attendance were very impressed with the Attorney General and look forward to working with him and his colleagues at the Department to follow up on the issues raised in the meeting.

Attending the meeting for the Department of Justice, in addition to Attorney General Holder, was Acting Assistant Attorney General for Civil Rights Loretta King; Sam Hirsch, Deputy Associate General Counsel; Monty Wilkinson, Counselor to the Attorney General, and Margaret Johnson, Special Assitant to the Attorney General.   Attending the meeting from the disability community were Tony Coelho; Curt Decker, National Disability Rights Network; Sandy Finucane, Epilepsy Foundation of America; Steve Gold, ADAPT; Marilyn Golden, Disability Rights Education and Defense Fund; Andy Imparato, American Association of People with Disabilities; Jennifer Mathis, Bazelon Center for Mental Health Law; Dr. Marc Mauer, National Federation of the Blind; and Jeff Rosen for NAD and Snap!VRS.

Heckled Woman Speaks Out

from the JFA Moderator: The following is a Guest Column written by Marianne Hoynes who was heckled and booed while trying to speak at a health care town hall. 

>>>For a previous post on this incident

Thank you Ms. Hoynes for reminding us of the humanity at stake in this debate.

We who need health care reform are real people, really suffering
by Marianne Hoynes

A couple of weeks ago, I in my wheelchair went to a NJ town hall meeting to learn more about the new health care bill. I thought this would be a good time to share with my congressman what it is like to be sick in America today.

I am on disability. I have been diagnosed with Rheumatoid Arthritis and Sjogren's Syndrome, two auto immune diseases, where my body sees my healthy connective and mucous tissue, mistakes them as unhealthy, and attacks them, causing irreversible damage. I spend half my day in a wheelchair because of degenerative disk disease.

The stress of living with chronic illness, waking up every morning in severe pain day after day, can drain me of hope. The financial stress added to that is almost unbearable. My disease is all but invisible, so I have to get expensive imaging tests to track its progress. Some medications are a thousand dollars plus a month.

Knowing every day, that I am the reason my family is being driven from middle class into poverty because of the cost of my health care , is a huge burden to bear.

We who need health care reform are real people, really suffering.

To my dismay, I entered a room filled with a screaming, angry mob, whose purpose was to shout down anyone who wanted to speak. My sense of right was stronger than my fear of sharing something personal and painful about my life in front of these bullies. They were not going to stop me from saying what I had to say.

I started with the terrible story of Kitty Genovese, murdered in the streets of NY in front of 38 witnesses, calling out for help, as they turned their backs on her. This was later defined as the "bystander effect"; a social phenomenon where individuals will not offer someone help during an emergency while others are present. The greater the number of bystanders, the less likely they are to offer assistance. New Yorkers earned a bad reputation of being cold and uncaring.

This seemed a fitting analogy to the tens of millions of Americans who are being driven into poverty and homelessness because of catastrophic illness, while the world watches. What happens to the least of us in our society defines who we are as a nation. We were so ashamed to hear that story of Kitty Genovese. We as a society need to have more shame over how we treat the sick, physically and mentally challenged in this country. This could happen to any of you.

When I got sick, the health care and pharmaceutical industries strapped me on like a feed bag, and began sucking me dry of everything I worked hard for in my life. There is no regulation, no one to protect me from this extortion, no one to help me until I and my family become destitute and have to take charity, welfare, food stamps.

Reasonable health care is a basic human right in every developed nation in the world. Americans are the only ones who do not see it that way.

This country needs to see health care as a basic human right, not a privilege. And make no mistake, the world is watching. We, once a revered Superpower, are now becoming known as a nation who profits from its most vulnerable population, and treats its sick as a financial commodity, feeding from us until we are destitute. We need to allow our sick and disabled to live with some dignity, afford needed medication and treatment, much as we did once for our elderly. Anything less is inhumane.  

Share your Story Below

Guest Column: The Disability We Don’t See

Contributed by AAPD's Coalition Partner, the Islamic Society of North America (7/26/09):

The Disability We Don’t See
By Khansa Padri

Confession isn’t Part of Islam, but I reason to make one.  I used to harbor anxious feelings about people with physical and mental disabilities.  That’s why when the prospect of volunteering for the Special Olympics recently came my way I hesitated.

The inner debate was on.  Did I really want to get up on my Saturday morning and bake in the sun for innumerable hours to help with a program for people that made me uncomfortable?  But the social benefits for children in need!  Shouldn’t I help the feeble?

Ugh, but how well I remembered my own uneasiness in being around disabled children.  I could be cozy in bed, sleeping in late after a hectic week.  Then the little voice within spoke up, though I tried repeatedly to shut it out.  It kept asking: “What would Khadijah, the Mother of the Believers do, may God be pleased with her – the woman who gave everything to the budding Muslim community in Makkah, for the sake of Allah?”

At last, with a deep sigh and a quick bismillah, I signed my name on the dotted line.

Saturday morning I found myself decked in a white hijab and tons of sun-block lotion.  I can do this, I kept telling myself.  I tried to psyche up.  I envisioned myself happily and successfully getting through the day.  But most importantly, I renewed my intention to participate in this event solely for the pleasure of my Creator.

When I got to the Special Olympics site, abruptly I beheld a flurry of people-in wheelchairs, on crutches, cast in varied apparatus and motions all mingling with one another.  For a moment, I was taken aback.  My eyes swallowed the un-synched scene, and my heart gave a quick flutter.

I swiftly pulled myself together and registered, got my volunteer badge, and headed off to my event.  My task was mercifully simple:  Keep the relay race lines moving and physically assist anyone in need of a hand here or arm there.

One by one, the unique athletes, some trudging, others hopping, slowly struggled down the 50 yard track, never taking their eyes off the finish line and always surpassing it.  Each time a member made it across the trodden path, the entire team broke out in pride-screams of victory.  With each passing race words of encouragement instinctively spilled out of my mouth and  gentle touches of aide was a simple matter of reflexes.  I soon became a member of not just one team but all three.

The day moved faster than I expected. Even the blazing sun didn’t seem so bothersome anymore.  I was actually enjoying myself.  I ate some scrumptious food and even conversed with a number of participants, listening to their wholesome dreams of growing up and leaving their mark on the world.  Yes I had a bit of difficulty understanding  the speech of a few, but I never failed to see the eagerness and  determination to succeed that illuminated their faces.

The day wound down, only a couple of contests left.  I felt immensely satisfied with how the even unfolded for me.  Little did I know, that my day was just about to begin?

It was a 10-yard baton relay race between two teams.  Things were flowing smoothly as before with the athletes engaged in friendly competition. A small boy of about 7 in a wheel chair, with one full leg and one amputated to the knee, unexpectedly began struggling to stand up.

Naturally, I asked him what he was doing.  He would use his crutches in this final race, he said.  As I looked at him, it was clear that there was going to be on convincing this boy to stay in his wheelchair.  I had to think fast.  So instead of disallowing him, I simply gave him the keys to his independence.

Intently I watched him.  He began to wobble down  the lane.  He moved with laborious determination, stopping every so often to take a breath.  Whether  there was a rock along the way or Allah had just determined to teach me a hard-learned lesson, I don’t’ know. But before I could react, the young boy flipped onto the ground, his crutches lying close by.  Within seconds, I was beside the boy, feeling as if my heart was going to come out of my mouth.  I helped him turn over and checked for any injuries or signs of bleeding.  Except for a few minor scratches on his knees and palm, the boy appeared unhurt, alhamdulilah!

The race was over for him.  He’d turn around and call it a day.

But to my shock, he tightly grabbed hold of his crutches and fiercely stared in to the finish line.  His intent was clear.  So I helped him to his feet and then stood by in disbelief as the boy continued his arduous journey to complete the race.

Every eye was fixed upon him, step after grueling step.  By the time he reached that deeply coveted line, the entire audience was on its feet applauding raucously.  I myself literally jumped for joy and ran to meet him at the other end.

The satisfied look of accomplishment he wore, beads of perspiration on his forehead, is forever etched in my mind.  I congratulated him, exclaiming wildly: “You did it! You did it!”  He just looked at me.  And calmly he said: “No We did it.”

My heart dissolved. My eyes misted.  This 7-year old child, with a physical disability, yet the will and poise of  a hero, helped me more than anything I did that day.  He became my teacher.

For Allah had reminded me through him that the real disabilities in human beings lie not in their forms or intellects, but dwell in their hearts.  And all of them veil a single thing: A spirit imbued with arrogance that proud feeling which hinders us from acceptance of one another because of superficial differences; that prevents us from our native state of happiness for each other and mutual joy in togetherness; that keeps us from hymning our inborn will to express collective thanksgiving to the sole Creator and all His many splendid creatures.

I was humbled.  I was grateful.  By a miracle, I had been cured.

Help AAPD’s Cause Move Up to a League

Help AAPD’s Cause Move Up to a League!!

AAPD’s cause reached 2,500 members this week, moving us from a Guild to a 2,500 member Tribe! Please help us move from a Guild to the next step, a 5,000 member League, by recruiting others to our cause.

We want to be a Guild by Oct. 1. Help us make it happen.

Reach out to your friends, family and co-workers and make sure they’re all a part our AAPD cause! Visit the cause at http://apps.facebook.com/causes/293863/77712843?m=ef2c5a27

Just In: AAPD Joins Facebook Causes

From the JFA Moderator:

AAPD recently joined Facebook Causes as a way to get the word out about the disability rights movement and to make it easier for YOU, our dedicated activists, to contribute your support.

Take Action TODAY: Join or Donate to AAPD's Cause on Facebook and share these links with your friends.

>>> To Join the Movement

>>> To Support our Work

Action Alert: Share your Transportation Stories with Congress

From Donna McNamee (9/2/09):

Transportation for America Needs Your Stories for Congress

I don't know about you, but I'm feeling it - cutbacks in how much funding local transit authorities receive have meant longer commutes, fewer routes, increased fares, and a lot of frustration. And I know it's not just me - 75% of transit agencies have had to either trim down service or raise prices over the last few years, and the effects trickle down to everyone.

But for persons with disabilities and seniors, the impact is devastating. Those us us who literally have no other way to travel are now imprisioned in our homes when transit system service hours are cut. Those on fixed incomes are unable to afford the higher fares and the end result is the same: Staying at home and living in isolation. But it's not just the isolation, it's the job loss, the inability to go to school, seek medical care and remain independent in our home communities. The problems with transit which Congress and our state legislatures are ignoring is destroying the lives we've struggled to build.

The folks at Transportation for America have been collecting stories about how transit cuts are affecting real people, and the things people have written in are stunning. We need to make sure our members of Congress hear these stories so they can know what it’s like and pass laws to fix it. Will you pass the stories on to your representatives?

Just follow this link to take action: http://action.smartgrowthamerica.org/t/3224/campaign.jsp?campaign_KEY=1996

Thanks - I really appreciate your help!

Disability Leaders Share Personal Memories of the Lion of the Senate

Read below the personal remembrances of disability leaders as they reflected on Senator Ted Kennedy's death.

Christina N. Mills
California Foundation for Independent Living Centers

"My fondest memory of Senator Kennedy is from 1999. I was attended the National Youth Leadership Forum and ADAPT was holding an action on the Hill. Senator Kennedy came out to address the crowd and then came up to several of the youth to individually introduce himself. It was so exciting to meet a Kennedy, especially Ted Kennedy. He was an amazing human being who firmly believed in our community."

Kelly Buckland, Executive Director
National Council on Independent Living (NCIL)

"What a great man and a great family.  I have always been an admirer of the entire family...the Senator flew me back here to testify on health care reform in 1989.  I am looking at his thank you letter to me as I write this note.  Just one more reminder of how long the senator worked on health care reform and how it really was the 'work of his life.'  He will be missed by the entire world."

Dan Fisher
Executive Director of the National Coalition of Mental Health Consumer/Survivor Organizations

"My fondest recollection was at Fred Fay's house in Concord, MA, when Senator Kennedy and Connie Garner came to thank Fred for all he did to help in his campaign. They reviewed all their work together. Senator Kennedy inquired about how Fred was doing. Fred proudly displayed all the technology he used to communicate with the world.  Fred asked about Ted's back. Ted said it had been bothering him. Fred then recommended a special support complete with a several pages of documentation. The caring between the two of them was very touching. I felt the spirit of our movement strongly shining in that room."

Rayna Aylward
Executive Director at Mitsubishi Electric America Foundation

"My own recollection of the Senator is of a small personal gesture that meant the world to me, and may shed a little light on why his staff was so devoted and loyal.  I was standing in the foyer of his McLean home, after a VSA fundraising event, waiting for his sister Mrs. Smith.  The Senator walked in, carrying a tennis racket, looked at me and said smilingly "I guess you're not here for tennis."  Then he invited me to sit down inside.  I spent the next half hour or so surrounded by photos of my heros in the Kennedy family, sipping a soda served by the Senator himself."  

Nancy J. Bloch
NAD Chief Executive Officer

"On July 26, 2004, at a ceremony in Boston, Massachusetts marking the 14th anniversary of the Americans with Disabilities Act, we had the distinct honor of presenting a special award to Senator Edward M. Kennedy from the National Association of the Deaf (NAD) and the American Association of People with Disabilities (AAPD) in recognition of “his tireless efforts on behalf of over 28 million deaf and hard of hearing Americans.”  In our news release at that time we said that “Senator Kennedy has been at the forefront on issues important to the NAD over the years; he has consistently demonstrated his leadership on civil rights issues dating back to his election to the United States Senate in 1962.” His many accomplishments cannot adequately be summarized in a brief statement. His work has tremendously enhanced the quality of life of deaf and hard of hearing Americans in a very real and lasting manner.  I shall never forget that twinkle that was always in his eyes, and we will deeply miss his extraordinary wisdom, leadership and passion."

Laura Kaloi
Public Policy Director, National Center for Learning Disabilities, Inc.

Senator Edward Kennedy was twice honored and received The National Center for Learning Disabilities ‘Distinguished Advocacy Award’ for ‘making a difference in the lives of our nation’s children and adults with learning disabilities’.  In his taped response in 2005 -- that was broadcast at our Annual Benefit Gala dinner in NYC -- he responded with great passion and commitment to ensuring that every individual with a disability have a quality education in our nation’s schools.  His photo and statement hang in the front office of NCLD’s New York City headquarters as a great reminder of what we are engaged to do together.

All best wishes to his family and close friends.

Share your own stories below or visit www.tedkennedy.org for a broader range of personal tributes.

Kennedy Family's Statement on the Passing of Senator Edward Kennedy

Statement from the Kennedy Family (8/26/09):

Senator Edward M. Kennedy: 1932-2009

“Edward M. Kennedy – the husband, father, grandfather, brother and uncle we loved so deeply – died late Tuesday night at home in Hyannis Port.   We’ve lost the irreplaceable center of our family and joyous light in our lives, but the inspiration of his faith, optimism, and perseverance will live on in our hearts forever.   We thank everyone who gave him care and support over this last year, and everyone who stood with him for so many years in his tireless march for progress toward justice, fairness and opportunity for all.  He loved this country and devoted his life to serving it.   He always believed that our best days were still ahead, but it’s hard to imagine any of them without him.”

To share your sympathy and/or memories of Senator Kennedy visit www.tedkennedy.org

Handicap is NOT a Death Sentence

From U.S.News and World Report (August 10, 2009):

Handicap Is Not a Death Sentence and Should Not Be Treated as One
"Futile" healthcare is in the eye of the beholder, and should be in the hands of the patient
By Laura Hershey

Laura Hershey of Englewood, Colo., is a national advocate for the rights of the handicapped.

When people discuss "end-of-life care," they often invoke scenarios meant to sound ominous: tubes, breathing machines, physical dependency. I'm not scared by those images, having lived for 46 years with increasing reliance on technological and human support. A ventilator aids my breathing. Personal care assistants bathe, dress, and feed me. I operate my wheelchair by blowing into a tube. And my life is far from over. Of course, none of us can know for sure, but I plan on being around for a while.

That plan has not always gone unquestioned. Tactless acquaintances have told me they would kill themselves if they became as disabled as me. More chillingly, the last time I was hospitalized for pneumonia, I had two different nurses ask if I had a DNR—a "do not resuscitate" order. I replied that I had come to the hospital to get better, not to die.

Unfortunately, that expectation of medical treatment can run up against physicians' opposing views and hospitals' rules. In dozens of states, laws allow doctors to unilaterally deny lifesaving treatments that they deem "futile," even if the patient or a surrogate decision maker wants care continued. Some people actually advocate this, as a way to ration healthcare—limiting the resources available to sicker patients, to extend basic care to more healthy people...

Who should make medical decisions? The individual in the hospital bed, with everything at stake? The family, with their complex and sometimes contradictory concerns about love, obligation, and money? The doctor, with a vested interest in achieving rigidly defined "successful" outcomes? Or hospital administrators, with one eye on the bottom line?

The situations that worry me most are those involving different definitions of "futile" and "effective..."

Some prominent bioethicists, seeking easy scapegoats for escalating healthcare costs, increasingly question the value of providing care to people with disabilities, whose lives they (mistakenly) consider undesirable.

>>> For the Full Article

>>> For the Counter-Argument read the case for healthcare rationing from Michael Tanner of the Cato Institute.