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Commentary: Kennedy a champion for disability rights

From CNN (8/29/09):

Commentary: Kennedy a champion for disability rights

by Andrew Imparato, AAPD President and CEO

 (CNN) -- The disability rights movement has lost a giant in our global struggle for equal opportunity, human dignity and self-determination. Sen. Ted Kennedy's leadership as a disability champion was part of a broader commitment to civil and human rights.

But his accomplishments in the area of disability law and policy may prove to be his greatest and most long-lasting success as a legislator.

Senator Kennedy's commitment to the cause of disability rights was informed by his experience as the brother of Rosemary, who was born with an intellectual disability; and the brother of Eunice, who devoted her life to improving the world's treatment of people with intellectual disabilities...

... As an attorney with bipolar disorder who graduated from law school in 1990, I am one of a generation of professionals who have developed our careers in the wake of the ADA and other critical laws that protect our right to equal opportunity and fairness. I have personally benefited from Senator Kennedy's leadership. I have had the privilege of working closely with his extraordinary sons Ted and Patrick and with his top notch staff.

I cannot imagine a more effective champion for disability rights, for civil rights, for health care, for basic human decency, than Edward M. Kennedy. His legacy will be felt by more than 600 million children and adults with disabilities around the world for generations to come.

We have lost a champion, and we must all work harder to continue to make progress toward his compelling vision of a world where all people have value, all people have dignity, and all people can participate as equals in the lives of their communities.

>>> For the Full Commentary
>>> For Andy's CNN Interview on Kennedy

CNN: AAPD's Andy Imparato On Kennedy

Transcript from CNN's Interview of Andy Imparato Saturday, 8/29/09:

                     

For those who missed the CNN interview yesterday on Senator Kennedy's legacy for people with disabilities, the rush transcript from CNN is pasted below:

CURT DECKER, NATIONAL DISABILITY RIGHTS NETWORK: Senator Kennedy I think has emerged consistently as one of the true leaders. And so certainly the Education Act, the IDEA, and the Americans With Disabilities Act are two of the most major disability laws that I do not think would have happened without his leadership.

ERIC BUEHLMANN, FORMER SENATE STAFF MEMBER: I had a traumatic brain injury back in 1993. And Senator Kennedy's work has meant a variety of things, in terms of traumatic brain injury bill, making sure that there were services out there, rehabilitative services, but also his work on the Americans With Disabilities Act, ensuring that there's -- and his work on health care reform, to make sure my pre- existing condition isn't going to be taken into account for health care policies, employment discrimination, if I was ever going to encounter something like that, those kinds of things.

His work is very personal to me. Also having seen it on the hill, his love of the issue, and his belief in those kinds of things.

(END VIDEO CLIP)

WHITFIELD: To someone who says both Senator Kennedy and that Disabilities Act directly impacted him, Andrew Imparato, who heads the American Association of People With Disabilities. He joins us now from Baltimore. Good to see you.

ANDREW IMPARATO, AMERICAN ASSOCIATION OF PEOPLE WITH DISABILITIES: Thank you.

WHITFIELD: This act was passed about the time you were graduating from law school. How did this directly impact or perhaps even help launch your career?

IMPARATO: Well, you know, the law is really about creating equal opportunity for people with all types of disabilities. I have bipolar disorder or manic depression myself. And because of the law, I was able to be open about my condition throughout the career. I have made a career in the disability field. But you would be surprised how many people even in the field of disability rights aren't always open about their own conditions.

Senator Kennedy created an opportunity for a generation of professionals to be out with our disabilities. I was so moved by both of his sons talking about their own experiences with disability as part of their tributes at the funeral. And Senator Kennedy understood disability probably as well as anyone in the United States Senate.

WHITFIELD: Had you heard those stories before? And, of course, we know his sister Rosemary also having her bout with disabilities. And that was something that the family was extremely conscientious about.

IMPARATO: No question. You know, it's interesting, Ted Kennedy Jr. serves on my board of directors at the American Association of People With Disabilities, and I have never heard him tell that story. So I was hearing it for the first time with so many viewers. And it was so moving. And the message of the story is the message of the disability movement, the idea that disability is a natural part of human experience, and we shouldn't let it stop us from achieving our dreams.

WHITFIELD: So without this law, without the Disabilities Act, how do you suppose your career would have been able to go forward or do you suppose your life, if you try to look back, might it gone a different route without this law?

ANDREW IMPARATO, AMERICAN ASSOCIATION OF PEOPLE WITH DISABILITIES: Well, you know, I think many of us who work in the disability field, we feel called to do it. We feel like this is what we were put on the planet to do. That would be true if this law had passed or if it hadn't passed.

But I think the movement that created the law was the movement that buoyed Senator Kennedy as he came back to these issues, to create opportunities for parents of children with disabilities to purchase health care for their children, to do the mental health parity legislation most recently.

He understood how powerful this movement was and he saw himself as part of the movement. And it is a powerful movement and we're all grateful to his leadership today.

FREDRICKA WHITFIELD, CNN ANCHOR: His sister Eunice also a crusader in this area with her passing a couple weeks ago, Timmy Shriver picking up where mom and dad Shriver leave off with Special Olympics. But who do you suppose really carries the baton of Teddy Kennedy and this sort of sensitivity and commitment to people with disabilities?

IMPARATO: Well, again, I think that's one of the beautiful things about the Kennedy family. There are so many people carrying that baton today, whether it's Tim Shriver at the Special Olympics, whether it's Patrick Kennedy in Congress who is such a champion for the rights of people with psychiatric disabilities, whether it's Ted Kennedy, Jr. serving on my board and being a spokesperson for the disability community. We have so many in that generation.

And let's not forget Jean Kennedy Smith, who's still alive, and who created VSA Arts, which created opportunities for people with disabilities in the arts.

This is a family that has given and given and given to the disability community, and we're very grateful.

WHITFIELD: Andrew Imparato, thanks so much for your time and your reflection. Appreciate that.

IMPARATO: Thank you.

Disability Leadership Meet With White House Staff on Health Reform

Dan Fisher, Andy Imparato, Ari Ne'eman, Marty Ford, Suellen Galbraith, Bob Williams, Kelly Buckland, and Mike Oxford outside the White House after meeting with Health Reform Staff.
 (Photo By: Dan Fisher)

Disability Leadership Meet With White House Staff on Health Reform

From the Disability Representatives Present at the White House (8/31/09):

On August 27, as a follow-up to the meeting that President Obama had with disability community representatives on July 24, a group of advocates for home and community-based long-term services and supports met with Nancy-Ann DeParle and other senior staff at the White House to discuss the  Community First Choice - Option.

The disability representatives thanked the President's staff for his strong leadership on enacting comprehensive health reform that will help advance the goals of the Americans with Disabilities Act by eliminating disability-based discrimination in health care coverage and barring pre-existing condition exclusions.

The meeting participants had a frank and productive discussion concerning the possible opportunities and barriers of including a Community First Choice Medicaid State option (CFC Option) in the final health reform legislation.  The CFC Option is an idea that emerged from discussions with Senator Harkin's office and Representative Davis's office as a way to make progress on home and community-based services and supports under Medicaid and a way to lay the foundation for later enactment of the Community Choice Act.  It is a proposal that has support from the cross-disability community, including leaders from the NCIL, ADAPT, the Consortium for Citizens with Disabilities (CCD), AAPD, the National Coalition of Mental Health Consumer Survivor Organizations, Autistic Self Advocacy Network and Self Advocates Becoming Empowered (see below fact sheet on the CFC option)

The disability representatives thanked the White House Staff for their time and support for expanding choices in long-term services and supports, and all agreed to keep open the lines of communication as health care reform heats up again when Congress returns from the August recess.

Attending the meeting from the White House were Nancy-Ann DeParle, Director of the White House Office of Health Care Reform; Tina Tchen, Director of the White House Office of Public Engagement; Jeff Crowley, Director of the White House Office on National AIDS Policy and Senior Advisor on Disability Policy within the Domestic Policy Council; Kareem Dale, Special Assistant to the President for Disability Policy; and Keith Fontenot from the Office of Management and Budget.  Mr. Fontenot's responsibilities for OMB include long-term services and supports policy.

Attending the meeting from the disability community were Mike Oxford and Cassie James from ADAPT, Kelly Buckland and Lou Ann Kibbee from the National Council on Independent Living, Marty Ford of The Arc/UCP Disability Policy Collaboration and CCD, Chester Finn of Self Advocates Becoming Empowered, Daniel Fisher of the National Coalition of Mental Health Consumer Survivor Organizations, Ari Ne'eman of the Autistic Self Advocacy Network, Suellen Galbraith of ANCOR, Lee Page of Paralyzed Veterans of America, Andy Imparato of the American Association of People with Disabilities, and Bob Williams, President Clinton's Deputy Assistant Secretary for Disability and Long-term Care Policy who attended as a private citizen.

>>> Download Community First Choice - Option Proposal (MS Word Document)

Victory! Psycho Donuts Stands Down

From the National Stigma Clearinghouse (8/25/09):

DOUGHNUT SHOP RELENTS; STANDOFF ENDS

Psycho Donuts' has agreed to end its 'fun-filled mental institution' theme. After finally talking with the protesting advocates, Psycho Donuts' new owner Jordan Zweigoran (formerly a partner) began last week to remove some of the store's stigmatizing props.  

 

The protest's leaders showed extraordinary skill during this drawn-out ordeal.   Under their guidance a new coalition, CAUSE (Community Alliance United to Seek Equality), is organizing to seek respect and equal opportunities for  people with disabilities.

See more information at www.stigmanet.org   -- the first news item  is "California Doughnut Shop and Advocates' Coalition Reach Truce"

AAPD: Focus On ... H1N1

UPDATE; H1N1 Flu and Disability Community

On August 25, Obama Administration officials discussed – via a teleconference with disability leaders -- the most recent information regarding the H1N1 virus and specific concerns for the disability community. Brief oral presentations were made by officials from the White House, Centers for Disease Control and the Department of Health and Human Services.

Officials mentioned that seasonal flu vaccinations will start nationwide within the next several weeks, starting September 10, with a second round to start in mid-October, when the H1N1 vaccine will be available. They have talked with five manufacturers of the vaccine and purchased vaccine that will be distributed widely, and specifically through state health departments.

They noted that H1N1 affects people differently but there are five groups more at risk:  pregnant women, people with children less than 6 months old, health care emergency personnel, people between ages 6 months and 24 years, and people ages 25-64 who may be at higher risk due to chronic or other medical conditions. This totals about 160 million people.

Specifically in regard to disability, officials on the teleconference raised some topics and concerns.  One official talked about how the direct care workforce needs to be vaccinated to ensure continuity of care or personal assistant or attendant services for people with disabilities. Another mentioned ILCs and how others involved with these services should develop plans to minimize delays and the “need to preserve the care giving unit.”   Another noted that people with muscular disorders, children, people with metabolic conditions, people who can’t report onset of symptoms and conditions, people with pulmonary conditions, people with asthma, are also at more risk.  Another official from CDC said “we don’t have great experience of the affects of this new flu on the various categories of people with disabilities.”

They emphasized taking the following steps to reduce spread and resurgence of H1N1: hand washing, covering coughs, staying home if sick, becoming involved with school & employment plans, home preparation. Another official mentioned that state health departments would be active in the vaccination program and to contact them for further details.

Officials cited the website http://www.flu.gov as a source of information (in three languages) with a wealth of information, including personal preparedness, state contacts, and other tools. They encouraged all of us to visit and learn more. All flu.gov PSAs were captioned, including the Sesame Street Elmo one, my favorite.

Story by J. Simpson, Senior Director, Government Affairs, AAPD

IL: Action Alert! State Funding Cuts Must be Reversed

From Amber Smock, IL Activist:

To disability advocates across the United States:

I write this letter in the spirit of a call to arms, from the grassroots to the White House.  Thus far, 2009 is proving to be both a golden and a very difficult year in disability rights advocacy.  While the President has ordered the Convention on the Rights of People with Disabilities signed, the JFA Action Network has been developed, the youth wing of disability rights continues to grow, and we continue to find ways to work better and smarter together, our people are also facing dire crises away from the national level of advocacy.

This year, I cannot think about freedom without looking at the situation of people with disabilities in states such as California, Pennsylvania, Colorado and now Illinois.  All of these states are dealing with major cuts in services our community desperately needs to live even the most basic of lives.  These are states that have some of our strongest and most powerful advocates, and yet systems and funding in these states are completely out of control.  This is not to say that only these states have problems---but it is to say that the issues being confronted in these states, among others, are extremely serious this year.

I want to focus on the crisis facing Illinoisans with disabilities, in this letter.  About two weeks ago, Illinois centers for independent living were informed that the state would no longer fund any personal attendant services provided through CILS.  This includes PA training, PA referral and emergency back-up PA programs.  State funding for PA services will only come through our Department of Human Services, for which waiting lists are already a couple of months at least and do not include any kind of counseling or support for people with disabilities needing PAs.  In addition, the asset limit to receive PA services through DHS is being reduced from $3,200 to $2,000.  Hours will be reduced for many people who receive PA services now.  These cuts will be effective October 1.

At Access Living, we are slated to lose two staff with disabilities who coordinate PA services.  At other CILs across the state, they are losing even more staff.  Most of these staff are also people with disabilities.  I was informed today that a great disability advocate at Progress Center for Independent Living named Mark Karner, who has worked there for 16 years, is being let go along with five of his coworkers.  The very people with disabilities who make our movement great in Illinois are losing their jobs and being forced to live in poverty.  As far as I understand, over 40 CIL workers who coordinate PA services are being let go statewide.

Cutting Illinois PA services provided through CILs strikes a sickening blow at the very core idea of independent living and consumer control.  To compound the issue further in Chicago, we are facing major cuts in paratransit services and a fare raise from $2.25 to $3.00 as of October 1. For people with disabilities who work and have more than $2,000 in assets, they are facing the possibility of needing to quit their jobs and spend assets to meet the levels required in order to receive services.

I fully realize the importance of continuing the struggle for disability rights on Capitol Hill and in the White House, and I applaud those who have been doing this work.  However, I also wanted to raise the issue that currently in the states, we are facing these extremely serious legislative and bureaucratic threats to our way of life as a community.  I find these threats ableist and also sexist, in that PA service cuts will disproportionately cause not only people with disabilities but especially women PAs and women with disabilities to lose jobs.  I am very disturbed by the systemic neglect of the welfare of all of us, including the poorest of the poor of us.  I am disturbed by the forced classism of the cuts that force more of our people into poverty.  And I am very disturbed by the fact that we had thought we were rid of a corrupt politician, Rod Blagojevich, and that his successor has seen fit to try to balance a deficit on the backs of disability rights heroes living in Illinois.  It’s nothing new…but I am just disturbed afresh.

My friend Mike Ervin, who is also a friend to many of you and one of our best known advocates, is someone who may potentially lose PA services due to these cuts.  Mike has been asking advocates to contact the office of Illinois Governor Quinn at 312-814-2121and ask him to restore funding for PA services and to reverse the asset limit.  So please support us by calling the Governor and letting him know how shameful these cuts are, and how important it is to preserve our Home Service Program services.

Through September, this will be the focus of many Illinois advocacy efforts and I and others will certainly be sending along news as things develop here.

Shame on the state of Illinois, which is already one of the worst states to live in for community choice!  This should be the land of Lincoln, not lockdown.  FREE OUR PEOPLE!

Amber Smock

Access Living, Chicago ADAPT, FRIDA

TAKE ACTION

Dear advocates,

 Further news on Illinois cuts to services for people with disabilities…still looks like they want our people to stay home, eat minimally, and drop dead.  Reportedly:

 ·         I had incorrectly cited the projected decrease in the asset limit and going from $3,500 to $2,000.  In fact, our Department of Human Services is looking at decreasing the asset limit from $17,500 to $2,000.  Astounding!!!!  This decision is not yet final but very, very stressful while we wait for the outcome.

·         Caps on personal attendant hours are as follows:

          Money Management            3 hours/month

          Food Preparation                  27 hours/month (less than an hour a day!)

          House Work                           17 hours/month

          Laundry                                  12 hours/month

          Outside the Home                 15 hours/month (no appeal possible on this cap)

·         DHS does not yet know how many people will be affected, how many hours will be cut, or how much money will be “saved.”

·         PAs will begin to be paid through debit cards in the near future.

 According to our organizers on this issue, we need help taking action as follows:

 Call Illinois Governor Quinn’s office today!

 When you call:

Ask for the Governor’s chief of staff Jerry Stermer.  Call 312-814-2121.

          To email  go to:  www.illinois.gov/GOV/contactthegovernor.cfm

     Also call Speaker Michael Madigan’s office at  773-581-8000  fax  773-581-9414

And call Senate President John Cullerton at 773-883-0770 fax  773-296-0993

Tell the Governor AND THE OTHER state LEADERS: 

• You made a mistake!
•  REVERSE THE CUTS! Please DON’T ELIMINATE THE FUNDING FOR PA Coordinator positions at CENTERS FOR INDEPENDENT LIVING.
•  Please make sure the Governor continues to fund home services programs like the one at Access Living and its sister CILs across Illinois.

Amber Smock

DC: Kennedy Memorial Planned for TOMORROW

From the Leadership Conference on Civil Rights (8/28/09):

Dear Colleagues:

The loyal and dedicated staff of our long-time friend and champion Senator Edward M. Kennedy has asked us to announce tomorrow's memorial service for Senator Kennedy to the entire Leadership Conference coalition.  We hope you will be able to attend this service to honor our dear friend and to pay tribute to his inestimable service to the cause of civil rights.

***

Senator Kennedy served 47 years in the United States Senate, and loved each and every day he spent there, especially the people who are its heart and soul.  

The family of Senator Kennedy would like to invite members of the public to join us on Saturday, August 29, 2009 at 4:00 p.m. on the East Front Lawn of the Senate. 

The Senator's motorcade will stop briefly at the Senate so that current and former staff, those with whom the Senator worked during his time in Washington, and those whose lives have been touched by the Senator can bid a final farewell.

Sincerely,

Wade Henderson

President and CEO

 

TUNE IN: AAPD President on CNN

From the JFA Moderator:

TUNE IN TOMORROW, Saturday  (8/29) at 1:30 Eastern AAPD President and CEO, Andrew Imparato, will be speaking on the impact that Senator Kennedy had on the disability community. 

Make sure you tune in, and tell others to watch, too.

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.

Former President Bush on Senator Kennedy

Statement from Former President George H.W. Bush
41st President of the United States
August 26, 2009

Barbara and I were deeply saddened to learn Ted Kennedy lost his valiant battle with cancer. While we didn’t see eye-to-eye on many political issues through the years, I always respected his steadfast public service — so much so, in fact, that I invited him to my library in 2003 to receive the Bush Award for Excellence in Public Service. Ted Kennedy was a seminal figure in the United States Senate — a leader who answered the call to duty for some 47 years, and whose death closes a remarkable chapter in that body’s history.

Barbara and I -- and all Bushes -- send our heartfelt condolences to Victoria, Ted’s kids, and the entire Kennedy family.