A Note from the Editor:
Dear NCIL Members,
The next edition of the Weekly Advocacy Monitor will be released January 12, 2009. The NCIL offices will be closed for the holidays and internal development activities from December 22nd until January 5th. The NCIL staff is very excited for the coming year and we look forward to sharing it with you, our members. Happy holidays!
Eleanor Canter
1) What’s Happening in the Nation’s Capital?
Take Action: Tell President Elect Obama Your Policy Priorities!
2) National News
More Opportunities to Communicate with the Obama Transition Team and Members of His Cabinet
A Year End Report, by Healthcare Policy Analyst Elizabeth Leef
IDEA Regulations Tweaked
NY Governor Patterson Rips SNL for Mocking Blindness
3) State News
DC to Make Homeless Shelters More Accessible
Massachusetts Moves to Close Four Institutions
Protesters Disrupt Meeting about Texas' State Schools for the Disabled
4) Announcements and Additional Resources
Associated Press Collecting Stories on the Impact of the 24 Month Waiting Period
Working DRAFT Obama Transition Team Letter
Take Action: Tell President Elect Obama Your Policy Priorities!
Over the past month and a half, NCIL staff has met with key policy staff of the Presidential Transition Team (PTT) to convey our members’ policy priorities for people with disabilities. The time has come for President-Elect Barack Obama and his PTT to hear directly from you: people with disabilities, Centers for Independent Living, and Statewide Independent Living Councils. Your input is critically needed to ensure that people with disabilities have a seat at the table and nothing is considered about us without us!
We urge you to use NCIL’s DRAFT letter to President-Elect Obama as a model for you to send your own letter. Please send your letters via email to Kareem Dale (kdale@barackobama.com) or via the PTT’s Website.
Nothing About Us Without Us! There are only 36 days left before the Inauguration and we need to do more than stand on the sidelines and watch the parade:
- People with disabilities should tell their stories and connect life experiences to specific policy requests;
- Centers for Independent Living and Statewide Independent Living Councils should highlight their successes and priorities!
For more information, contact NCIL Policy Analysts Deb Cotter or Elizabeth Leef by phone (202.207.0334) or email deb@ncil.org, elizabeth@ncil.org. Please be sure to share you letters with us so we have your stories on record. When sending email, please put “Letter to Pres-Elect Obama” in the subject line.
More Opportunities to Communicate with the Obama Transition Team and Members of His Cabinet
Many of you know that the Obama-Biden Transition Team has put in place a remarkable online opportunity regarding how stakeholders influence public policy. This site promises to show all the meetings they are holding with stakeholders, and includes links to materials those stakeholders are using in those meetings. There's also an opportunity for the public to comment on each meeting and the issues raised.
Members of the Obama Health Care Transition team, including former Senator Tom Daschle (incoming Secretary of Health and Human Services), are soliciting comments and recommendations on healthcare reform via a blog on the transition website. Although we know they can’t possibly read all of the submissions, we understand that the transition team is reviewing comments and using technology to track topical issues and key words. This is a good opportunity to raise the level of awareness and importance about disability issues in healthcare reform.
A Year End Report, by Healthcare Policy Analyst Elizabeth Leef
It has been two years I have had the honor to serve as NCIL’s HealthSouth Fellow. I have grown both personally and professionally and am proud to announce that I will remain on staff as a full time Policy Analyst. The following article discusses recent events within the NCIL Committees and Taskforces I have worked with.
The PAS Subcommittee, chaired by Judy Roy of Alabama, has been meeting monthly to discuss strategies to get the Community Choice Act passed in the 111th Congress. Dr. LaPlante, a leading researcher from the University of California San Fransisco, has agreed to attend the 2009 NCIL Conference and we have confidence his report will result in a Congressional Budget Office scoring of the bill. Senator Baucus of the Senate Finance Committee is dedicated to reforming the healthcare system along with Senator Kennedy, Chairman of the Health, Education, Labor and Pension Committee. These two Senators hold the power to seriously change the healthcare system and we need to make sure they know our issues.
NCIL’s Healthcare Committee, chaired by Brenda Curtis of Ohio, is looking for passionate NCIL members to get involved with the Committee. The Committee recently released a position paper on Universal Healthcare that can be reviewed on the NCIL website. Many of the Committee’s priority bills will be getting a lot more attention next year. People who qualify for SSDI have to wait up to 2 years before they can receive Medicare and there is a new coalition pushing for Ending the 24 Month Waiting Period for Medicare. The coalition is looking for stories from people caught in this waiting period. The In Home Rule, addressed by the Medicare Independent Living Act will also be examined, according to a source on the Presidential Transition Team. Promoting Wellness for People with Disabilities will be re-introduced next session with high expectations. Sections of the bill will be incorporated within a larger moving piece of legislation.
The Assistive Technology Committee, chaired by John Nousain of Wisconsin, continues to meet monthly and strongly supports the Coalition of Organizations for Assistive Technology. COAT advocates for legislative and regulatory safeguards that will ensure full access by people with disabilities to evolving high speed broadband, wireless and other Internet Protocol (IP) technologies. They have been focused on the 21st Century Communication and Video Accessibility Act and education on the transition from Analog to Digital Television. The AT committee advises RESNA (Rehabilitation Engineering and Assistive Technology Society of North America) on issues regarding consumers and durable medical equipment and assistive technology professions. RESNA is currently changing their AT certification process.
NCIL scored a major victory delaying a competitive bidding program being implemented by the Centers for Medicare and Medicaid (CMS). The Competitive Bidding Program or DMEPOS (Durable Medical Equipment Prosthetics Orthotics Supplies) program was delayed for 18 months in the Medicare Bill that passed last summer, which included an exemption for high end complex rehabilitation devices. The industry agreed to a 9.5% cut as a “pay for” in the delay and exemption. While this was a major victory, competitive bidding will return and it will include manual wheelchairs and oxygen. The 9.5% cut might have a ripple effect on the availability of certain durable medical equipment devices. Another important CMS regulation NCIL is watching is the targeted case management rates, which help transition people out of nursing homes.
The Veterans Committee, chaired by Steve Thovson of Minnesota, also continues to meet monthly and is strategizing how CILS can better serve veterans. The Committee has shared important information that could benefit CILs in serving Veterans. Long term goals include acquiring increased funding for CILs to increase capacity, and training on veterans needing advocacy with the Veterans Administration. The committee plans on submitting a proposal to present at the 2009 NCIL Conference and will develop a position paper on Independent Living and Veteran Services.
The Aging Disability Resource Center (ADRC) Taskforce, chaired by Mary Margaret Moore from Massachussetts, has completed its position paper regarding what Aging Disability Resource Centers should be in order to effectively serve the senior and disability communities across the country. NCIL continues to work with the Lewin Group on technical assistance and outreach to Centers for Independent Living and Aging organizations, such as the Area Agencies on Aging as well as State Units on Aging through collaboration efforts by the Administration on Aging. The NCIL grant from AoA has ended and a discussion has started for another grant to be awarded through the Lewin Group for 2009.
Ongoing efforts are being made to increase awareness among disability advocates on collaboration with aging advocates to secure funding for nursing home transition, serving returning veterans, increasing respite services, and educational outreach opportunities to increase awareness about the digital TV telecommunication transition. The Federal government is not recognizing the power of Independent Living and it is up to you to get to the table in your State and demand a seat and to be equal partners with aging advocates providing services to the senior and disability communities.
The Native American / Consortia of Administrators for Native American Rehabilitation (CANAR) Taskforce, chaired by Jim Beck of Alaska, continues to meet monthly to bring attention to Native Americans with disabilities struggling to acquire services on Tribal lands. The Committee completed their position paper on Independent Living Services in the Indian Nations. And it is dedicated to working with CANAR to increase funding to improve Independent Living services on tribal lands. The committee is looking to collaborate with other Native American organizations to push for Reauthorization of Native Americans Healthcare Act. NCIL presented at the Mid-Year CANAR conference and helped sponsor the last conference in Arizona.
The SEUI Taskforce, chaired by Phil Pangrazzio of Arizona, competed a position paper on Unions, Personal Care Attendants and Consumers. NCIL is currently collaborating with SEIU on the passage of the Community Choice Act. An event is being planned for early Spring 2009 to push for the passage.
NCIL is currently working with Doctorial Candidates CJ McKinney and Patricia Yeager from the University of Northern Colorado in developing the 2009 Bi-Annual Membership Survey. This year the survey will take into consideration issues NCIL is currently working on. For example, NCIL has a grant with the HealthSouth Corporation to hire a Policy Analyst to work on Healthcare issues. NCIL will always advocate for increased funding for Independent Living Centers and to strengthen the rights and responsibilities for Statewide Independent Living Councils. We will fulfill our grant obligations to our funders, including advocacy on healthcare through the Healthsouth fellowship. In an attempt to narrow NCIL’s legislative and advocacy focus to better serve our membership and be more effective, the next NCIL survey will look much different.
The HealthSouth Fellowship interview process is almost completed. We had several excellent applications and will be announcing the winner in early January. The HealthSouth Fellow will cover healthcare issues surrounding Medicaid, CMS regulations, universal healthcare initiatives, assistive technology, education and the ADA /civil rights. Elizabeth will continue to staff the PAS committee and will work on Medicare, ADRC, veterans, and Native American issues.
IDEA Regulations Tweaked
Source: Disability Scoop, by Michelle Diament
Modifications to the regulations governing the Individuals with Disabilities Act will allow parents to decline special education services and clarify who can have non-attorney representation.
The new rules, which take effect December 31, make it such that parents can request in writing that their child no longer receive special education services. Under such circumstances, the student will be treated as a general education student and lose protections provided under IDEA. However, if parents later want to request a reevaluation for special education services, they may.
Also, the rules say that state law will determine whether or not parents may be represented by a non-attorney at due process hearings. To read more from the new rules published in the Federal Register click here.
NY Governor Patterson Rips SNL for Mocking Blindness
Last night Saturday Night Live aired a mock interview with New York Governor David Patterson, which highlighted his disability. Fred Armisen, who played Patterson, said that he would like to fill Hillary Clinton’s senate seat with someone from “the freak bin” (such as himself). “I mean, they don’t have to be blind. Maybe someone with like a gamey arm. Maybe the giant gums with the tiny teeth. Let’s get one of those in the Senate. I mean, no matter who we pull out of the freak bin it will be better than the garbage pile New Jersey elected” Watch the clip here.
Source: The Raw Story, by David Edwards and Muriel Kane
New York Governor David Patterson, who is legally blind, was not amused by a Saturday Night Live spoof which mocks his disability to the point of depicting him as a buffoon. CNN's Alina Cho explained on Monday, "It is clear that Governor Patterson clearly believes that SNL stepped over the line when it portrayed him as blind and bumbling."
In that sketch, the actor representing Patterson, Fred Armisen, has trouble finding his way around, holds a chart upside down, and says things like, "Whoever is appointed Senator must, like me, be caught totally off guard and be comically unprepared to take office."
According to the New York Times, "Mr. Paterson is known for a having an irreverent sense of humor that is cheekier than most politicians would dare." An official statement from Patterson's communications director also insisted, "The governor engages in humor all the time, and he can certainly take a joke."
"However," continues the statement, "this particular 'Saturday Night Live' skit unfortunately chose to ridicule people with physical disabilities and imply that disabled people are incapable of having jobs with serious responsibilities."
Although the New York Post described Patterson in its headline for the story as being in a "blind rage," Patterson himself refused to express anger when asked about the skit by reporters on Sunday. He joked instead, "I run the place that I work in so I don’t have to worry about being discriminated against, I think. But the point is that a lot of people who don’t get promotions and don’t get opportunities and don’t even get work are disabled in our society."
Patterson similarly told the Daily News, "I can take a joke. But only 37% of disabled people are working and I'm afraid that that kind of third-grade humor certainly adds to this atmosphere. Let's just say I don't think it helped."
The National Federation of the Blind has called the skit an attack on all blind Americans, and the president of the National Federation of the Blind of New York suggested that even though the show would never dare mock Patterson in racist terms, "’Saturday Night Live’ was reaching for a cheap laugh at the expense of a whole class of people." Neither CNN nor the Times has been able to obtain a comment from Saturday Night Live. The New York Times has more details here.
DC to Make Homeless Shelters More Accessible
Source: The Examiner, AP
The Justice Department has reached a settlement with the D.C. government that requires the city to make homeless shelters more accessible to people with disabilities. Under the agreement reached Friday, D.C. must improve oversight of contractors who manage shelters and develop a plan to ensure that homeless people with disabilities can access shelters, among other requirements. District officials estimate the overall plan would cost be between $4 and $5 million.
A 2008 survey by a contractor found that 23 percent of the city's homeless are physically disabled, 19 percent have a mental illness and 2 percent are living with HIV or AIDS. Justice Department officials say they investigated the shelter program after receiving complaints that the city was violating the Americans with Disabilities Act.
Massachusetts Moves to Close Four Institutions
Source: Worcester Telegram and Gazette, by Aaron Nicodemus
State officials announced yesterday that the Irving A. Glavin Regional Center, a state facility for the intellectually impaired, will be closed within four years along with state institutions in Winchendon, Palmer and Waltham.
Glavin’s 55 residents will be moved to “community settings” or sent to one of two remaining facilities in the state, located in Wrentham and Danvers, “based on each individual’s needs, abilities and wishes.”
In all, 316 people will be moved from four institutions, which include the Fernald Developmental Center in Waltham; Monson Developmental Center in Palmer; and Templeton Developmental Center in Winchendon’s Baldwinville section. The Wrentham Developmental Center and the Hogan Regional Center in Hawthorne will remain open. About 900 people live in the six institutions.
The Glavin Center, which employs a staff of 165, was once marked to be closed in the early 1990s by then-Gov. William Weld before the decision was reversed. A DMR spokeswoman said the plan is to close Glavin by June 30, 2013.
The closures are a continuation of an ongoing trend by the state of deinstitutionalizing the care of severely disabled people. For more than a decade, the state has been moving intellectually impaired residents out of institutions and into group homes. Several of these group homes are clustered along Lake Street in Shrewsbury, near the Glavin Center. Read More.
Protesters Disrupt Meeting about Texas' State Schools for the Disabled
Source: The Dallas Morning News, by Emily Ramshaw
Advocates for closing Texas' state schools for the disabled disrupted a state board meeting Wednesday morning to protest mistreatment at the facilities, which a recent federal report blamed in part for the deaths of more than 50 people in the last year.
Candie Reyes and other protesters disrupted a meeting of the Department of Aging and Disability Services council Wednesday. Some chanted 'people are dying, shame on you' and '53 deaths on your watch,' and threw red spray-painted wristwatches at the dais. With chants of "people are dying, shame on you" and "53 deaths on your watch," close to 20 protesters shouted at members of the Department of Aging and Disability Services council and threw red spray-painted wristwatches at the dais.
"Who's standing up for these people?" asked Jeff Garrison-Tate, who heads Community Now, an organization that supports moving people with disabilities into community-based care. "If 53 dogs died, people would be marching in the streets."
After 10 minutes and efforts by agency Commissioner Addie Horn to calm the group, the protesters were escorted out by security. The routine meeting resumed. "It's unfortunate that this small group of narrow-minded people came to disrupt this public meeting," said agency spokeswoman Cecilia Fedorov. "We asked them to behave in an orderly manner and told them we wanted to hear from them during the public comment period." Read More.
Associated Press Collecting Stories on the Impact of the 24 Month Waiting Period
NCIL has been advocating for the elimination of the 24 month waiting period once someone is deemed eligible for SSDI. A new coalition has been formed here in Washington DC. They are currently collecting stories from beneficiaries or families caught in the 24 month waiting period. If you have a story to tell please contact Ricardo at the AP – he is looking to do a story about families who have lost relatives because of the two-year waiting period. Ricardo’s email address is RAlonso-Zaldivar@ap.org, and his phone number is 202-641-9442.
Working DRAFT Obama Transition Team Letter
Dear President-Elect Obama:
Thank you for your leadership on disability policy issues during your campaign and throughout your career. The National Council on Independent Living (NCIL) looks forward to working with you and your Administration to implement the policy changes you and Vice President-Elect Joseph Biden outlined in your Plan to Empower Americans with Disabilities. We are thrilled that Senator Tom Harkin not only served as your disability policy advisor during the campaign, but also that you continue to seek the Senator’s input. However, the participation of people with disabilities in shaping policy is critical to the success of the programs and services that often define our lives. We are pleased that you have hired several key disability advocates as part of your team. NCIL will continue to provide input and advice from our community organizers with disabilities. We stand ready to assist you in the mission to implement initiatives that will finally allow Americans with disabilities the opportunity to pursue the American Dream.
As you know, NCIL is the oldest cross-disability, national grassroots organization run by and for people with disabilities. NCIL's membership includes Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), people with disabilities, and other disability rights organizations. Independent Living (IL) organizations are directed and staffed by individuals with disabilities themselves, making them uniquely qualified to address relevant issues with expertise and practical solutions. As a membership organization, NCIL advances Independent Living and the rights of people with disabilities through consumer-driven advocacy. NCIL envisions a world in which people with disabilities are valued equally and participate fully.
CILs provide peer support, independent living skills training, and individual advocacy for people with disabilities, giving people the tools they need to live independently in their communities and fully contribute to society. Most importantly, they provide systemic advocacy by working with local, state, and federal policy makers to ensure the civil rights of people with disabilities and increase the effectiveness and efficiency of the systems on which they depend. To that end, NCIL urges you to implement the following policies to ensure that IL advocates can continue to provide these cost-effective services to the most disenfranchised Americans. Enhancing these services will enable Americans with disabilities to survive this economic crisis and help to revive the economy:
- Reauthorize the Independent Living Program, Title VII of the Rehabilitation Act of 1973.
NCIL has been working to reauthorize and reform the Rehabilitation Act for nearly a decade while people with disabilities have fallen through the cracks and continue to face unemployment at a rate of up to 70% (Source: Department of Labor).** Please find below recommendations for improving the Rehabilitation Services Administration (RSA) and its policies to ensure that all Americans can obtain employment and participate fully in society. NCIL’s priorities for the reauthorization of the Rehabilitation Act are outlined in our position paper.
Consumer control of services should be the cornerstone of our economic recovery. People with disabilities are the best equipped to oversee programs that assist them. This concept of “consumer control,” has proven to be a highly effective way of managing programs that serve people with disabilities, such as Centers for Independent Living, Statewide Independent Living Councils, and state rehabilitation councils.* It should now be implemented at the federal level by giving people with disabilities a voice over the Rehabilitation Services Administration. Title IV of the Workforce Investment Act should be amended to include the establishment of Rehabilitation Services Administration Council to direct the activities and oversee the operations of the Rehabilitation Services Administration in order to hold the Commissioner and their agency accountable. The link above provides an outline of a consumer-controlled RSA Council that would not only promote self-determination, but also enhance services to people with disabilities across the agency.
- Enact the Harkin-Specter Community Choice Act
Hold firm to your commitment to enable people with disabilities to live in their homes rather than in costly Medicaid-funded nursing homes. The Community Choice Act is about individual CHOICE. It mandates that states and Medicaid to offer home- and community-based services as an alternative to an institutional setting. Research conducted at the University of California at San Francisco has found that the Congressional Budget Office’s score of the bill was severely overinflated and that community based services are affordable (LaPlante, 2007). Every American deserves the right to live independently and to choose how and where to live.
- Include persons with disabilities in the development of all housing policies, housing programs, and educational housing presentations.
NCIL believes that community living is a right. There is a wealth of data and information documenting that there is a critical lack of affordable, accessible, healthy/nontoxicand integrated housing for persons with disabilities, as well as a high incidence of housing discrimination committed against persons with disabilities. The Federal government funds a great deal of affordable housing; yet federal housing policies are often developed without the participation of persons with disabilities. The NCIL Housing Position Paper focuses on, but is not necessarily limited to, federally funded housing. In this harsh economic climate, people with disabilities should be included in all aspects of the development of housing initiatives.
- Reform Social Security by providing employment support insurance to people with disabilities and wage replacement support for people whose condition prevents them from working.
National public policy on employment and benefits is stuck in a morass of confusing program rules and conflicting advocacy positions. Both the rule makers and the advocates are struggling with how to support employment while protecting health and income benefits for those who rely on them most.
Designs for a two-plan model, reinforced with tax reform, would feasibly address these issues. The rules and programs would continue to have a level of complexity, but the mind-bending process of proving an inability to work before getting work incentives would get resolved. There would be a health coverage program for those looking for work. Advocates for employment supports would no longer be at odds with those demanding a safety net for those who need one. Tweaking Social Security rules has not worked up to this point, and there is little reason to believe it will work in the future. NCIL urges you to adopt the World Institute on Disability-NCIL proposal Being American: The Way Out of Poverty as part of your reform.
- Make the Federal Government a model employer of people with disabilities: Comply with the Rehabilitation Act of 1973, as Amended.
The percentage of Federal employees with targeted disabilities hit a 20-year low in Fiscal Year 2006, when the participation rate fell to 0.94% of the federal government’s total work force. In addition to declining numbers, the average grade for people with targeted disabilities was 8.5 – a full grade and a half below the government wide average of 10. Year after year, the Federal Government fails to demonstrate that it is a model employer when it comes to the hiring, placement and advancement of people with targeted disabilities.
The Federal Government has never been a model employer of people with targeted disabilities, despite requirements under the Rehabilitation Act of 1973 to develop and maintain an affirmative action program with the goal of hiring and advancing people with disabilities – a requirement that has been in place for 34 years!
Yet, the Federal government is on the brink of experiencing the most significant exodus of experience and talent in history. The Office of Personnel Management (OPM) estimates that the Federal government will lose 40 % of its total workforce by 2010 as the baby boomer generation begins to retire. People with targeted disabilities currently experience an unemployment rate of 70% and represent a significant untapped pool of talent. Now is the time for Federal agencies to be held accountable and required to satisfy their legal obligation to become a model employer of people with targeted disabilities.
As a grassroots driven organization, NCIL will conduct our biannual Legislative and Advocacy survey of our membership to determine our policy priorities. We encourage your Administration to consider our current policy priorities as we move forward.
Thank you for your consideration. We look forward to working with you and your new team in the coming weeks, months, and years to enhance the lives of people with disabilities through community integration and full participation in society. Please do not hesitate to contact NCIL Policy Analysts Deb Cotter or Elizabeth Leef by phone: (202) 207-0334 or email: Deb@ncil.org, Elizabeth@ncil.org if we can be of any assistance.
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December 15, 2008