1) What’s Happening in the Nation’s Capital?
NCIL’s Participation in Inaugural Activities
The Disability Power and Pride Ball A Huge Success!
2) National News
Independent Living Funding Opportunity in House Stimulus Package – Act Now!
Nursing Home Industry Worries about New Ratings System
Obama Engages Four Disability-Friendly Advisors
Regulators Ordered to Leave Work Unfinished: Work on ADAAG Proposed Guidelines Halted
3) State News
Kansas Advocates Seize Opportunity to Educate New Lawmaker
People with Disabilities, CILs Paying the Price in San Diego, Elsewhere
4) Announcements and Additional Resources
Op-ed by Mike Strautmanis, Chief of Staff to the Assistant to the President for Intergovernmental Relations and Public Liaison
ADRC Grantee Funding Opportunity
Cheney’s Villainy — Nothing to Do with His Wheelchair
NCIL’s Participation in Inaugural Activities
Disability Power and Pride Inaugural Ball: Staff members John Lancaster, Jorge Pineda, Elizabeth Leef, and Eleanor Canter attended the Inaugural Ball, along with their loved ones. Jorge remarked, “It was great to see many people that I had not seen in many years and remarkable how many people from other states came to the ball and the inaugural festivity”.
Congressman Steny Hoyer (D-MD) and Senator Harkin (D-IA) addressed the packed and excited ballroom, to the delight of the crowd. Hoyer said, “We will celebrate our country's promise of inclusion, that all men and women are created equal and are endowed by their Creator with certain unalienable rights… America offers a promise of using [our] abilities to seize opportunities to make a difference for individuals, for their families, for their communities, and, yes, for their country.”
Several other speeches and performances followed. The crowd enjoyed an excellent dinner and cocktails and the dance floor was packed throughout the night. It was an evening for celebration, and our community clearly got the memo. The disability community’s first inaugural ball was a huge success and NCIL staff was honored to have been a part of it!
Inauguration Day: Estimates for the attendance of the inauguration are still ranging between 1 and 2 million. Massive problems with security and transportation kept tens of thousands of ticket holders outside the gates, including NCIL staff Eleanor Canter. Although the crowds kept a good attitude, masses could be heard chanting “Let us in! Let us in!” Many people with disabilities braved the cold and long lines, giving our community a visible presence. “I’m still glad I was there and that I survived. The huge masses of people moving in unison was something very strange to be a part of. I keep referring to that day as the Armageddon of Hope,” she said.
Tim Fuchs met with family and friends and watched the event from the base of the Washington Monument. “Even though we were a mile from the Capitol, we found ourselves nestled between the Washington Monument and the White House with a million of our closest friends. Regardless of party or politics, it was encouraging to see so many people outside in bitter cold to demonstrate our support for President Obama and our country. I just hope that this administration will truly support the Independent Living Movement.”
Justin Chappell volunteered with the Presidential Inaugural Committee to help others enjoy the week-long festivities as much as he had riding a float in the 1993 Inaugural Parade. He staffed registration lines at a three-day series of trainings for inauguration week volunteers. January 17th and 18th, he served as an Opening Ceremony Press Team Volunteer in zero degree weather. He worked from 6 a.m. until 6 p.m. helping credentialed press locate their assigned areas and VIP seating.
Denise Law also volunteered for the Inaugural Committee, which received 60,000 applications and accepted 18,000. “It was an honor to be one of the chosen - my assignment was Hotel Information Assistance, serving President Obama’s friends and family at the Mayflower Hotel, which held one the unofficial inaugural balls. It was exciting to feel the visitors’ excitement, as it was my first time ever volunteering for such an historical event,” she said.
The Disability Power and Pride Ball A Huge Success!
Source: RollCall
The Disability Power and Pride Ball, scheduled for Sunday night at the National Press Club, was the first of its kind and is being called a “political coming out” for people with disabilities by the ball’s planners. The celebration was set to include sign language translators and wheelchair accessibility.
“What we don’t want is for people to be patronizing and say, ‘Let’s include some people with disabilities at our party.’ We want to have our own party and reach out to everybody else,” says former Rep. Tony Coelho (D-CA), chairman of the Ball Planning Committee and author of the Americans with Disabilities Act. “We want to be proud of what we are.”
The sold-out ball, which was expected to be attended by 700 people, advertised a buffet, cocktails and a performance by Bill Shannon, also known as “the CrutchMaster.” Shannon… is a choreographer with the Cirque Du Soleil. He planned to perform a show in which he would swing around and dance on his crutches, proving that a bad hip can’t keep a man down.
The ball was also an occasion to honor disabled veterans, Coelho said. “We want them to see how proud we are of them and welcome them to our community. To say, ‘Don’t be embarrassed in anyway by your disability,’” he said in an interview before the ball. “A lot of times these young men and women come back and there is this sympathy as opposed to enabling them to be part of society totally. We want them to realize that we are very much proud of who they are, what they are and what they can do in the future.”
Independent Living Funding Opportunity in House Stimulus Package – Act Now!
Update! Friday, House of Representatives completed mark ups in 3 Committees of the proposed economic recovery bill. It will be brought to the House Floor sometime this week. Summaries and full text of the bill as marked up by the Committee are available on the House Appropriations website. Independent Living is listed under the Subtitle C Education portion.
The Senate is busy drafting its own bill. The Senate Appropriation Committee will be determining the amounts in each section. It is critical Senate Appropriators hear from Independent living advocates.
This is funding is not secured and we could loose it all. Take the following steps today!
Action Steps: Call your Senators and ask them to keep the House appropriation funding level at $200 million for the Independent Living Program in the American Recovery and Reinvestment Act.
Targets
- Call all House Members! Ask them to vote yes on the Economic Stimulus Bill. Thank them for including $200 million for Centers for Independent Living!
- Call all Senate Appropriations Committee Members and ask them to keep the House appropriation funding level at $200 million for the Independent Living Program in the American Recovery and Reinvestment Act.
Ask for the legislative aide handling the Economic Recovery package.
Suggested talking points: Hi! My name is ___. As a constituent and a person with a disability, I am requesting the (Senator / Congress(wo)man support the American Recovery and Reinvestment Act and the House Appropriations Committee mark up, which includes $200 million for two years for the Independent Living Program!
Centers for Independent Living enable people with disabilities participate in, and contribute to society. Independent Living has struggled for too long. Now is our opportunity to be heard and recognized. If funding cuts continue Centers for Independent Living will have to work harder and longer to serve its growing constituency. These continued cuts come despite:
- Almost 30% of counties remain unserved. (Source: Rural Institute at the University of Montana);
- 10 million Americans with disabilities live in poverty;
- 72 % of adults with disabilities who want to work are unemployed;
- The dramatically increasing size of the disability population as a direct result of the wars in Afghanistan and Iraq, the climbing rates of obesity and diabetes, and the growing aging population, and;
- Most people with significant disabilities still are unable to benefit from the opportunities and services CILs provide because of the lack of funding.
For more information: Contact NCIL Policy Analyst Elizabeth Leef by email, Elizabeth@ncil.org, phone: (202) 207-0334, ext 1015 or fax: (202) 207-0341.
Nursing Home Industry Worries about New Ratings System
Source: AP
About 22 percent of the nation's nearly 16,000 nursing homes received the federal government's lowest rating in a new five-star system unveiled in December, while 12 percent received the highest ranking possible. A home could obtain up to five stars based on criteria such as staffing and how well they fared in state inspections. The lowest ranking possible was one star. Such a simple rating for so complex a task as caring for the elderly has led to much anxiety in the nursing home industry.
Kerry Weems, acting administrator for the Centers for Medicare and Medicaid Services, said the agency was merely taking existing data already on the agency's Web site and making it easier for patients and families to choose a nursing home. He said it can be difficult for people to understand all the aspects of an inspection.
"This should help consumers in narrowing their choices, but nothing should substitute for visiting a nursing home when making a decision," Weems said. Officials also see the new rating system as a way to challenge nursing homes to improve the care they provide to nearly 1.5 million patients nationwide. "Transparency is key when it comes to nursing home quality," said Sen. Herb Kohl (D-WI).
Under the new system, five stars means a nursing home ranks "much above average," four star indicates "above average," three means "about average," two is "below average" with a one indicating "much below average." The rankings will be updated quarterly. The industry is already questioning the validity of the rankings.
To nursing home operators, the five-star system is a great idea whose time has not yet come. The system "is poorly planned, prematurely implemented and hamhandedly rolled out," said Larry Minnix, president and chief executive officer of the American Association of Homes and Services for the Aging, an industry trade group.
The ratings are based on three major criteria: state inspections, staffing levels and quality measures, such as the percentage of residents with pressure sores. The nursing homes will receive stars for each of those categories as well as for their overall quality.
Consumer groups like the concept, but they agreed there are some potential problems with the data. For example, the staffing data is self-reported just before state surveys and is widely recognized as unreliable. "From a consumer viewpoint, it's not stringent enough," said Alice H. Hedt, executive director of the National Citizens' Coalition for Nursing Home Reform. "It's basically taking information already available on Medicare's Nursing Home Compare Web site and pulling it into an easier system for consumers to use, and that is a good thing."
Read More or visit Medicare's Nursing Home Compare website: http://Medicare.gov/NHcompare
Obama Engages Four Disability-Friendly Advisors
At the Disability Pride and Power Inaugural ball, it was announced that Kareem Dale would become a Special Advisor to President Obama on disability issues. We have also learned that Paul Steven Miller will be playing a role in helping the Obama Administration ensure that people with disabilities will be represented in positions within the Administration. Tony Coelho, former United States congressman from California, current chair of the Epilepsy Foundation's national board of directors is also playing an active role in advancing disability interests and hires within the Administration. The new Chief of Staff to the Assistant to the President for Intergovernmental Relations and Public Liaison is Michael Strautmanis. Please find below (under Additional Resources) a Washington Post Op Ed he authored last year concerning people with disabilities and President Obama.
Obama Campaign Hires New Disability Vote Director; Campaign Continues to Strengthen Constituency Vote Operation
Kareem Dale, founder and chief executive officer of The Dale Law Group (DLG) in Chicago, has been appointed as the Obama campaign’s Disability Vote Director, effective July 14, 2008. Dale, partially blind, will help broaden the campaign’s reach and involve even more voices in this coalition for change.
In his role as Disability Vote Director, Dale will be responsible for all disability outreach efforts for the campaign, including attending national conferences, coordinating grassroots efforts, speaking at events as a surrogate for the campaign, and ensuring that campaign locations are accessible for all Americans with disabilities.
“Throughout this campaign, Barack Obama has insisted that we can change our politics and involve new voters in the process if we focus on our common hopes as Americans,” Campaign Manager David Plouffe said. “Kareem Dale shares Barack Obama’s fundamental commitment to building a world free of unnecessary barriers, stereotypes, and discrimination, and we’re excited he’s a part of this campaign.”
Fifty-four million Americans – roughly 1 in 6 – personally experience some form of disability. Senator Obama is committed to empowering people with disabilities so that they can fulfill the American dream and take full advantage of their talents and become independent, integrated members of society. “I look forward to encouraging all Americans with disabilities to support a candidate who is going to bring real change to their lives,” Dale said.
Paul Steven Miller, Henry M. Jackson Professor of Law and Director, UW Disability Studies Program
An internationally renowned expert in disability and employment discrimination law, Professor Miller joined the faculty in 2004, after spending twelve years in public service in Washington, DC. He was one of the longest serving commissioners of the U.S. Equal Employment Opportunity Commission (EEOC). While at the EEOC, Professor Miller spearheaded the development of the agency's mediation program. He has also served as the White House liaison to the disability community and as Deputy Director of the U.S. Office of Consumer Affairs. Prior to joining the U.S. government, Professor Miller was the director of litigation for the Western Law Center for Disability Rights (now the Disability Law Center) and taught at the law schools of Loyola University and UCLA.
Since 2006, Professor Miller has been the director of the University of Washington's Disability Studies Program, an interdisciplinary program that examines the social, cultural, historical and personal experience of disability.
Professor Miller currently serves as a member of the board of Mental Disability Rights International, an international human rights NGO; a member of the National Advisory Board of the Center for Genetic Research, Ethics, and Law at Case Western Reserve University; the Medical Ethics Committee of Seattle Children's Hospital; a member of the Grants and Community Leadership Committee of The Seattle Foundation; and an International Associate of the Employers' Forum on Disability based in London, England. He also serves as an appointed member of the HHS Secretary's Advisory Committee on Genetics Health and Society.
Professor Miller is an active member of the American Bar Association's (ABA) Labor and Employment Section, and he is a Fellow of the ABA Foundation. Professor Miller is a frequent speaker and lecturer in the area of equal employment opportunity, workplace diversity, disability issues, and the legal, social and ethical issues of the Human Genome Project, and he is a prolific writer on these topics. Professor Miller's insights on the topics of the workplace, disability, genetics and the law often appear in the national media, in print, television and radio. He has received grant funding for his research and work in the areas of disability human rights, genomics and health equality, and bioethics. He has been the convener and chair of several national and international symposia, including Framing Legal and Human Rights Strategies for Change: A Case Study of Disability Rights in Asia (2008); and The Ethics and Policy of Limiting Growth in Children with Severe Disabilities: Issues of Decision Making, Benefits and Social Impact (2007).
Regulators Ordered to Leave Work Unfinished: Work on ADAAG Proposed Guidelines Halted
President Obama has halted all pending regulations. So for example, the Department of Justice's proposed ADA Accessibility Guidelines (ADAAG) are on hold pending review by Obama Administration officials.
Source: Washington Post
In its first hours, the Obama administration took an initial step to put its imprint on the government, ordering work halted on all federal regulations left unfinished at the end of the Bush era until they can be reviewed by the new president's team.
White House Chief of Staff Rahm Emanuel dispatched a memo yesterday afternoon to federal agencies and departments, directing them to stop pending rules until the new administration has time to conduct a "legal and policy review" of each one. The directive has become a first-day tradition among presidents, dating to Ronald Reagan in 1981, helping incoming administrations put their own philosophical stamp on the regulatory work that is a subtle but potent tool of presidential power. Presidents George W. Bush and Bill Clinton did the same thing.
Deputy White House press secretary Bill Burton said yesterday evening that he was uncertain how many unfinished rules the new administration has inherited. In a parting note late last week, Susan Dudley, the Office of Management and Budget official who oversaw regulatory work under Bush, said that the administration had issued 100 final rules since November, when Obama won the presidency, fewer than in the final weeks of Clinton's tenure. It is unclear, however, how many of them still have not taken effect -- or how many regulations are left over in earlier phases. Read More.
Kansas Advocates Seize Opportunity to Educate New Lawmaker
Source: The Joplin Globe, by Andra Bryan Stefanoni [excerpted]
Pittsburg, Kansas - A steady stream of constituents came through the door Friday afternoon at 701 N. Broadway as U.S. Rep. Lynn Jenkins (R-KS) formally opened her district office.
Jenkins, the former state treasurer who defeated Democrat Nancy Boyda for the U.S. House post, spends Tuesday through Thursday in Washington, then returns to Topeka. “We wanted a place where constituents could come or call at any time with concerns or questions. Constituent services is going to be a focus of mine.”
Representatives from numerous organizations, boards, businesses and educational institutions attended the open-house reception. Some, including Lou Ann Colyer and Dave Sorrick from Southeast Kansas Independent Living, had specific reasons for attending; others merely sought an introduction.
“There are a couple of federal issues related to disability services, including the Community Choice Act, that we are here to champion,” Sorrick said. The Community Choice Act would allow individuals eligible for nursing-home services or intermediate care to choose a new alternative, so that the money follows the individual. Read More.
People with Disabilities, CILs Paying the Price in San Diego
Source: MSNBC
San Diegans reacted Sunday to news that California's fiscal future had lurched yet another step toward oblivion. State Controller John Chiang announced he could no longer make payments for services to disabled and blind people who need the money to pay for rent and food. Payments would most likely have to be stopped by Feb. 1. "Delaying these payments will hurt real families," Chiang said. About one million people would be affected by the non-payments.
Access to Independence is an independent living center that been around since 1976. It gets about 35-37 percent of it's total budget from the state. That works out to roughly $56,000 a month. Louis Frick is the executive director of Access to Independence. He says, this is really going to hurt people who need help. "They're very tight budgeted number one. Number two, you miss a check and all of a sudden the likelihood of losing your home, losing the apartment or shared living space you're in," Frick said. "It's extremely frustrating." Read More.
Similar situations are occurring in Iowa and Kansas.
Op-ed by Mike Strautmanis, Chief of Staff to the Assistant to the President for Intergovernmental Relations and Public Liaison
My son Jori has a disability. He is on the Autism Spectrum. Jori is a daily gift to our family, but we face challenges. Fortunately, Jori has a friend named Barack Obama. Literally. Barack has watched Jori grow up. He stands by Jori, his mother, and me as we struggle with the barriers society places in the way of people with disabilities. Every American with a disability, or who has a loved one with a disability, should be fortunate enough to have a friend --- or even a President --- like Barack Obama.
I want our country to provide support to families like mine --- the families who face the practical, financial, and emotional challenges of a loved one with a disability. Jori has taught Barack about these challenges. These days, I work on the Obama-Biden campaign after serving on Barack’s Senate staff as his Chief Counsel since he arrived in Washington. But long before that, Barack and I were friends. He and Michelle have been a big part of our family’s life and a great help to my wife and me. To them, Jori is not a statistic; he’s a kid they see around town or at the office. They see how our family, which has more advantages than many, struggles to help Jori to get the care he needs, which is sometimes more than a loving family can provide, and the education he deserves, but few public schools have the resources to deliver.
When Barack gives a friendly hello to Jori, he shows his kindness; when he accommodates my schedule to enable me to be a fully engaged parent, he shows that he understands what families like ours go through. He understands that as a leader, he has an obligation to help us to keep all of America’s promises to our loved ones and give us the tools we need as parents to ensure that our children won’t be shortchanged.
As President, Barack will begin by creating a new White House post: Assistant to the President for Disability Policy. He will press Congress to pass the CLASS Act and the Community Choice Act to help Americans with disabilities to choose to live independently in the community and to help them pay for the direct care workers, assistive technology and other tools that make independent, community-based living possible. For our children, Barack will continue his fight for full funding of IDEA so that students with disabilities are assured of a free appropriate public education. Barack agrees that funding IDEA at less than half its authorized level is a disgrace, but he also understands that merely wringing more money out of Congress is not enough. His Secretary of Education will fully implement and enforce IDEA. Local school districts’ foot-dragging and resistance to IDEA, denying teachers what they need to serve kids with disabilities in the most inclusive possible setting, will no longer be tolerated.
It’s easy for me to say that my friend Barack will do these things, but this isn’t just friendship talking. I know he will do the right thing, for two reasons. First, there is his record: As an Illinois state senator Barack Obama sponsored legislation that created an autism spectrum diagnosis program, designed to implement evidence-based best practices. Barack worked with Illinois families to build the Easter Seals academic programs that prepare students for independent living. Moreover, Barack helped pass Illinois’ mental health parity law as a State Senator. Barack understands that we need universal screening, education and early intervention strategies for all children, but especially children with disabilities. That’s why he intends to provide $10 billion per year in funding for developmental programs serving children between birth and age five. Barack has long supported the Family and Medical Leave Act; as President, he will expand it and help the states create paid leave systems to ease the tough choices that are faced every day by working families providing support to a disabled member.
But there is a second reason that I have faith that a President Obama will fight for people with disabilities, and one that I find more compelling: I have seen Barack Obama with my son and other people with disabilities. I have seen how he puts his arm on Jori’s shoulder, how he smiles at Jori and speaks to him as the person that he is. I see his understanding that Jori and every other American with a disability is a fellow child of God with potential worth developing and dignity worth protecting. I see this and I know that Barack understands why I would do anything to secure real opportunity for that precious child, why any parent in my place would do the same. I see that Barack Obama comprehends all of that, and he wants to help us get there. And I know that if we can help Barack Obama to get to the White House, he will do more than any President ever has done to help those of us who love and care for loved ones with disabilities to achieve everything they can achieve. I know this man. So does Jori. And he gives us hope.
ADRC Grantee Funding Opportunity
The U.S. Administration on Aging (AoA) and the Centers for Medicare & Medicaid Services (CMS) have published a call for applications for $25 million grants to State Health Insurance Assistance Programs (SHIPs), Area Agencies on Aging (AAAs), and Aging and Disability Resource Centers (ADRCs) for grant funding resulting from provisions of the Medicare Improvement for Patients and Providers Act (MIPPA) of 2008. Additionally, another $5 million grant is available for an organization to serve as a national resource center to provide technical assistance to these programs related to outreach to Medicare beneficiaries with limited incomes. This collaborative effort of AoA and CMS requests States to submit joint plans that demonstrate coordinated and targeted efforts to reach beneficiaries with limited incomes and to assist them with applying for Medicare Savings Programs and Part D Low-Income Subsidy assistance. Additionally, States are asked to demonstrate how funds will be used to bolster outreach efforts to beneficiaries in rural areas.
Please note that a bidders’ teleconference is scheduled for February 4 to provide states with an opportunity to ask any questions.
More complete grant information can be found on AoA's website.
Cheney’s Villainy — Nothing to Do with His Wheelchair
Last issue we brought you some of Advocate Laura Hershey’s work in the form of the petition to object to the award of the Jean Hersholt Humanitarian Award at the Oscars to Jerry Lewis (there is still time if you have not yet signed!). Today we bring you her short but poignant article on the reaction the country had to the sight of Dick Cheney using a wheelchair during the inauguration.
Blog by Laura Hershey
I never thought I’d be sticking up for Dick Cheney. But his appearance at the Inauguration today, riding in a wheelchair pushed by several Marines, has elicited so many nasty, disabiliphobic comments, that I find myself… well, not exactly defending Cheney, but at least defending the dignity of wheelchair use.
Cheney apparently pulled a back muscle, and has to stay off his feet for a few days. Granted, with his clunky chair and his scowling countenance, he’s not exactly the model of the hip, sexy crip. Too many commentators, however, have turned the wheelchair into a mark of shame. MSNBC’s Chris Matthews said, “The Vice President in that wheelchair… is a metaphor for the low esteem with which he’s held in this country. His numbers are pathetically low.” (Is Matthews aware of the fact that President Franklin D. Roosevelt, one of the most effective and most popular presidents, governed from a wheelchair?)
Around the Internet, I’ve seen numerous gleeful references to the image of Cheney in a wheelchair. Several compared him to Dr. Strangelove, the maniacal nuclear scientist in Stanley Kubrick’s film. Others invoke Mr. Potter, that mean old banker in Frank Capra’s “It’s a Wonderful Life”.
We don’t need another villain in a wheelchair. A villain he may be, with shared responsibility for torture, repression, and all kinds of other crimes against humanity. But the wheelchair has nothing to do with it. |
January 26, 2009