Welcome to the 2009 Annual Conference Edition of the Weekly Advocacy Monitor! As you will read below, this year’s Conference was a huge success, thanks to our incredible membership and generous sponsors. I would like to take this opportunity to thank the NCIL Board and staff for their tireless efforts to make this event happen! I would especially like to thank top sponsors Purple Language Services, Pride Mobility, Johnson & Johnson, Amerigroup, HealthSouth, The Center for Disability Rights, Verizon, Q90 CIL Management Suite, Invacare, NCART, IndependenceFirst, HSC Foundation, AdvaMed, Arizona Bridge to Independent Living (ABIL), Living Independence Network Corporation (LINC), Sunrise Medical, Vehicle Production Group LLC, and Edison Electric Institute, though every contribution to this year’s Annual Conference has been critical to the event and is very much appreciated by NCIL and its members!

Sincerely,

Kelly Buckland, Executive Director

1) Annual Conference Summary: Activities of the Week

Annual Meeting: Elections

Annual Meeting: Resolutions

Awards

Legislative and Advocacy Update!

March and Rally at the Nation's Capitol

Harkin Vows Health Overhaul Will Include Community Choice Act at NCIL Rally

Senate HELP Committee Press Briefing: Panel discusses the inclusion of Long-Term Care in Healthcare Reform

 

1)Annual Conference Summary: Activities of the Week

The 2009 NCIL Annual Conference was an incredible success! Despite the current economic crisis and the callous inaction on distribution Independent Living stimulus funds by RSA, advocates came from all over the country to demand civil and human rights for people with disabilities, attend workshops and plenaries on the Independent Living Movement, and organize national and grassroots plans of action.

On Friday, the Conference opened with a keynote from Dr. Connie Garner, staff to Senator Edward Kennedy. Dr. Garner spoke passionately on the need to pass the CLASS Act in conjunction with the Community Choice Act in order to create real change in healthcare and civil rights for people with disabilities. Attendees then participated in one of three events designed to educate both NCIL and its membership on the importance of diversity in our Movement. Throughout the week, NCIL’s Diversity Committee hosted a plenary session, a townhall forum, and a reception to expand dialogue on this important topic.

That evening, Conference-goers attended a reception hosted by the International Committee. At this powerful event, advocates were delighted to hear rousing speeches from Judy Heumann and Marca Bristo. They spoke about the need to ratify the UN Convention on the Rights of Persons with Disabilities. The room was entirely packed and their calls to action and the response of the crowd echoed loudly throughout the hotel.

Annual Meeting: Elections

On Saturday, attendees enjoyed the Exhibit Fair, Awards Banquet Luncheon, and Annual Meeting. The membership was very involved at this year’s Annual Meeting, at which several important votes were scheduled. Up for election this year were the positions of President, Treasurer, Representatives of Regions I, III, V, VII, and IX, and Members-At-Large. The results of the election are as follows:

President: Daniel Kessler
Treasurer: Phil Pangrazio
Members-At-Large: Bruce Darling, Jeff Hughes, and Frank Shible
Region I Representative: Mary Margaret Moore
Region III Representative: David Burds
Region V Representative, Regional Representatives Chair: Brenda Curtiss
Region VII Representative: Vacant
Region IX Representative: Kent Mickelson

When Vice President Dan Kessler won the Presidency, the position of Vice President (and Chair of the Legislative and Advocacy Committee) became open. Lou Ann Kibbee ran unopposed and was elected by unanimous consent.

Annual Meeting: Resolutions

Another important business item at the Annual Council Meeting is the consideration of Resolutions submitted by NCIL members.  Resolutions allow NCIL members to directly legislate the organization’s position and focus on specific issues facing people with disabilities and the Independent Living Movement. 

Spirited debate was held over this year’s two resolutions, both pertaining to people with chemical sensitivities. The first resolution called for NCIL to create a national training program on the subject and was struck down by the membership, which cited legal concerns and a lack of funding. A vote of the second resolution was postponed and will be carried out via email to the membership.

Awards

A vital tradition of our Annual Conference is taking the time to thank and congratulate individuals who have worked tirelessly for the advancement of Independent Living and the rights of people with disabilities. These people have made outstanding efforts and achievement. There is not enough space to outline the tremendous accomplishments of these individuals in the WhAM!, as a full account of their contributions could hardly fit in a book.  We offer our highest congratulations and appreciation for the unyielding labor and leadership of the following outstanding advocates.

This year’s Regional Advocacy Award winners were recognized by their peers and honored at our Opening Plenary Session. Region 1: Janet Dermody, Region 2: Chris Hilderbrant, Region 3: Maureen Hollowell, Region 4: Scott Renner, Region 5: Maureen Ryan, Region 6: Dennis Borel, Region 7: Dawn Francis, Region 10: Von Elison

This year’s National Advocacy Award winner was selected by NCIL’s leadership and recognized at the Annual Awards Banquet. The award was renamed the Corey Rowley National Advocacy Award in honor of Corey Rowley, who passed away recently. Newly-elected NCIL President Dan Kessler and Secretary Ann McDaniel spoke movingly about Rowley’s many contributions to the Independent Living Movement and of NCIL’s desire to honor her memory by naming the award after her. The Award was presented to Lee Perselay, counsel to Senator Tom Harkin, who has made major inroads for the disability community in the Senate.

The Frank Harkin Memorial Award was awarded to the honorable Anthony Coelho, and the President’s Award to the honorable David R. Obey.

The Diana Vietz Award for youth leadership was presented to not just one but two outstanding youth this year, Eddie Rea and Micah Fialka-Feldman.

Last, but certainly not least, Denise Figueroa was recognized for her lifelong commitment to NCIL and the Independent Living Movement as she accepted the Max Starkloff Lifetime Achievement Award.

Legislative and Advocacy Update!

Sunday was a very long but productive day. Attendees began with an update on NCIL’s legislative and advocacy activities, followed by the plenary Preparing for the Day on the Hill. The room was packed as advocates prepared themselves to visit with their Congressional representatives the following day. In the afternoon, advocates attended workshops and a meeting of the SILC Congress was held. Attendees worked late into the evening, meeting for regional caucuses to prepare for Congressional visits.

Jason and Judy started off the event by laying out the purpose and message of the subsequent “Day on the Hill”. To do this, Judy took time to explain what the Community Choice Act and CLASS Act bills were about. Following that, Jason explained the Promoting Wellness for People with Disabilities Act and the Ending the Medicare Wait Period Act in order to educate members about these bills and to make it clear why the language of these four bills needs to be a part of the healthcare reform. Judy then spoke on the history of healthcare reform, and how attempts to make changes to the broken system only happen about once every twenty years.

Congressional  process involved in to reform and laid out which Committees in the House and Senate have jurisdiction over the legislation. Jason stressed the importance of the Senate Finance Committee and the Senate Health, Education, Labor and Pensions (HELP) Committee. He noted that whatever version of reform comes out of the Senate will likely be what is passed by both Houses. Jason urged attendees to see if they had members of Congress on relevant Committees and Judy followed up with timelines.

Essentially, the Senate is drafting two bills in the respective Committees THIS WEEK and NEXT WEEK. That is why we all MUST call our Senators in the next few days and tell them the following: “Any Healthcare Legislation that does not include the language of the Community Choice Act, the CLASS Act, The Promoting Wellness for People with Disabilities Act, and any language to eliminate the two-year wait for Medicare is NOT complete legislation and not truly reform for millions of people with disabilities!”

This year at the NCIL Legislative and Advocacy [marathon] Update, Dan Kessler, Chair of the L & A Committee, Judy Roy, Chair of the PAS committee, Dr. Mitch LaPlante from the University of California San Francisco, Tim Sheehan, NCIL Regional Representative and Jason Beloungy and Elizabeth Leef, NCIL staff, gave an update on healthcare reform and disability-related issues.

It is important to remember as Congress crafts the healthcare reform bill that our issues must be included! We have heard that the Ending the Medicare Waiting Period Act has been addressed and that pieces of the Promoting Wellness for People with Disabilities bill is also included.

Dr. Mitch LaPlante from the University of California, San Francisco spoke passionately about cost savings that can be created in Medicaid by ending the institutional bias. Dr. LaPlante later met with the Congressional Budget Office (CBO) to discuss the funding formulas used to estimate the cost of the Community Choice Act.

Elizabeth Leef and Tim Sheehan gave an update on increased Independent Living funds both in the latest round of Appropriations and in the American Reinvestment and Recovery Act (ARRA). In 2008 Independent Living funding was at $73 million. In 2009 IL got an increase to $77 million, and this year the President’s budget includes another increase to bring IL funding up to $80 million!

With a new President, Independent Living was included in the ARRA! This was not a “do the right thing” on behalf of Congress. NCIL staff, board and membership worked hard to be included in this historic one time ‘stimulus’ bill. Senator Tom Harkin (D-IA) and Congressman David Obey (D-WI) championed the increase and worked closely with NCIL staff and Board members to ensure passage!

On February 13, 2009 President Obama signed the ARRA into law. IL advocates celebrated and started asking questions to the Rehabilitation Services Administration (RSA) about how and when the ARRA would be disbursed. In March 2009 NCIL submitted a list of questions (with the answers) to RSA on how ARRA funding should be distributed. On April 1, 2009 RSA released Part B ARRA funds to the states. On May 4th, RSA held a webinar on Part C ARRA funds. NCIL recommends all states review their SPIL in preparation for the ARRA funds.

To review  RSA documents on ARRA funds go to: http://www.ed.gov/policy/gen/leg/recovery/factsheet/ils.html

It is critical disability advocates educate those around them and persuade our elected officials to support the Independent Living Movement. NCIL thanks the hundreds of advocates who showed up in force last week to bring our issues to the forefront of national debate.

March and Rally at the Nation's Capitol

Monday morning approximately 500 advocates gathered to march through the streets of Washington to deliver our message to Capitol Hill and the nation. Our permit to march was denied at the last minute. Undeterred, NCIL members took to the street, chanting “Freedom! Now!” and “Our Homes, Not Nursing Homes!”. For the first time in three years we were granted sunshine and all 500 marchers made it to the rally unhindered.

Due to an unusually high number of first-time Conference attendees, the March and Rally at the Capitol were especially spirited and everyone was excited to take advantage of the opportunity.

At the rally site, newly-elected NCIL Board President Dan Kessler led the crowd to demand freedom for our people. This year the Rally was held on the West Front Lawn, directly in front of the Capitol Building. It was especially exciting to be so close to the Capitol Building, and anyone inside certainly heard our demand for freedom. Board members Mary Margaret Moore and Stan Holbrook charged the crowd with powerful speeches, reiterating the importance of diversity, advocacy, and the passion that drives change as everyone waited expectantly for Senator Harkin to take the stage. AAPD CEO Andy Imparato spoke on Supreme Court nominee Sonia Sotomayor and her seemingly positive record on disability issues. Billy Altom of APRIL played “Won’t Back Down” for the crowd and another NCIL member led us in “We Shall Overcome,” which was incredibly moving.

Harkin Vows Health Overhaul Will Include Community Choice Act at NCIL Rally

At Monday’s Rally Senator Harkin vowed not to sign on to any healthcare reform legislation that does not include the language of the Community Choice Act. The following article describes this momentous declaration and its implications. NCIL sincerely thanks Senator Harkin for his unwavering and unparalleled dedication to civil rights!

Source: CQ HealthBeat By Jane Norman

Democratic Senator Tom Harkin of Iowa said Monday he is working to get Medicaid changes included in the health overhaul that would provide broad long-term care services to people with disabilities outside nursing homes and that he won’t back down.

Harkin, following a speech heavily attended by disability rights advocates, said he has met with health leaders in the House and Senate about his bill, the so-called Community Choice Act (S 683), which would allow Medicaid coverage for activities of daily living in the home such as eating, bathing and toileting. Harkin said he requested his only one-on-one meeting with President Obama since the president took office to ask that the Community Choice Act not be forgotten as the health overhaul moves along.

He said he made his pitch to both Obama and Nancy-Ann DeParle, director of the White House Office of Health Reform. “I don’t see how I could support a bill that didn’t have the Community Choice Act in it”, Harkin, a member of the Health, Education, Labor and Pensions Committee, said in an interview. The author of the Americans with Disabilities Act, he also is a senior member of the committee who has headed up a task force working on prevention measures to be included in the health overhaul.

Harkin added: “I will do everything in my power to get this included. I don’t mince words on this. I will do everything I can as a senator both on the positive side and if I have to, on the negative side, to get this done”.

The legislation would allow non-institutional care for people with significant disabilities who are eligible for Medicaid, similar to some programs already implemented by states. States must provide nursing home services but don’t have to extend those services to people living outside nursing homes.

One hurdle is the projected cost of the expansion, which Harkin said has been estimated at $2 billion to $4 billion a year. However, he said he believes that cost may be overestimated and doesn’t take into account the thousands of people who could stay in their homes, earn wages and pay taxes if they had community-based services.

The coverage, even if costly, still should be included, he said. “We’re talking about a $1 trillion health bill. We’re talking about $100 billion a year”, he said. “Two or four or five percent is not too much to ask to provide civil rights for people with disabilities.”

The Consortium for Citizens with Disabilities said an estimated 10 million Americans currently need long-term services and the number will grow as the population ages, to a projected 26 million by 2050. The consortium said it backs Harkin’s legislation as well as legislation (S 697) introduced by HELP Committee Chairman Edward Kennedy D-MA), which would set up a voluntary national insurance program to provide non-medical benefits to people who become severely disabled. All workers would be enrolled unless they choose to opt out. Kennedy’s legislation is included in a draft health overhaul bill.

Harkin said he was not involved with writing the Kennedy measure. “It’s okay but it’s not what is needed right now. Its fine. But that doesn’t answer the problem of what’s existing right now”, Harkin said. “There is a pool of about 600,000 people on Medicaid who are denied their civil rights and that to me is the most important thing to address right now”, he said.

He told the disability rights advocates that even with passage of the ADA and subsequent court decisions affirming it, people with disabilities on Medicaid are still being forced into nursing homes, and he has spoken to all the big players on health legislation seeking inclusion of his bill in the overhaul.

“As far as I am concerned, there is no health reform without the Community Choice Act”, he told the cheering crowd.

Senate HELP Committee Press Briefing: Panel discusses the inclusion of Long-Term Care in Healthcare Reform

Following the Rally, NCIL Executive Director, Kelly Buckland, along with Policy Fellow Jason Beloungy, attended a Press Briefing held by the Senate Health, Education, Labor and Pension Committee (HELP) on Monday, June 8 in the Russell Senate Caucus Room (SR-325).  The Press Briefing was a way to get the topic of long-term care reform into the spotlight of healthcare reform. Dr. Connie Garner from Senator Kennedy’s office started off the event by explaining the purpose of the event and introduced Senator Harkin, the author of the Community Choice Act. Senator Harkin gave a passionate talk to those in attendance about the logic and necessity to include long-term care reform in healthcare reform. Senator Harkin’s speech excited the crowd, which was full of orange shirts and blue shirts worn by advocates and ADAPTers who attended the NCIL Conference.

Senator Harkin got the enthusiastically supportive crowd fired up for the remainder of the briefing. Following Senator Harkin, Dr. Garner introduced Dana Torres. Dana is well known as the 41 year old Beijing Olympics silver medal swimmer. Dana took part in the briefing to share her personal story of her experiences with her aging father and disabled coach. The panel included a very moving presentation by John Henry Douglas, a member of the Florida SILC who was awarded two purple hearts in Vietnam. John Henry spoke movingly in tears about his father being forced to die in a nursing home, as well as his own fight to get out of a nursing home. John Henry’s discussion was selfless in the way he talked about how the VA has benefits that allow him to live at home independently, and that these same benefits should be awarded to all people with disabilities – not just veterans. Following John Henry, Mike Oxford used his in-depth knowledge of the issues to make a strong case for both the Community Choice Act and the CLASS Act. Following Mike’s presentation at the briefing, Barbara Manard, Ph.D. vice-president of long-term care/health strategies for the American Association of Homes and Services for the Aging (AAHSA), talked about the research that supports the need for the CLASS Act.

Following the passionate and educated discussion by the other panelists, Dr. Garner and Lee Perselay, who is the Disability Counsel for Senator Harkin, laid out the specifics of the Community Choice Act and the CLASS Act, and why their inclusion in the health care reform legislation was necessary. There were several members of the Press in attendance, and two television cameras, but no time was left for questions by the media. This event was a good way to get issues of importance to the disability community in to the mainstream media’s attention. Now NCIL members and fellow advocates need to keep pressing the message NOW in your local areas.

After the March and Rally, attendees gathered to celebrate the week’s accomplishments at the closing social. NCIL staff Denise Law got the party started by being the first one on the dance floor, and soon it was packed. NCIL members danced for hours before saying goodbye for another year.