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NCIL WEEKLY ADVOCACY MONITOR (WhAM)

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SEANLKELLY

NCIL WEEKLY ADVOCACY MONITOR (WhAM) 08-31-09

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Posts: 215

09/01/09 13:11:32

National Council on Independent Living

Weekly Advocacy Monitor

Volume 7, Issue 26 August 31, 2009

1) What's Happening in the Nation's Capital?

NCIL Meets with Whitehouse to Discuss Community First Choice Option

2) National News

Healthcare Update

Senior Groups Reject Healthcare 'Scare Tactics'

Recent Rulings Against P&As Underscore the Importance of the Circuit Court of Appeals

3) State News

Tell Illinois Governor Quinn to Stop Cuts to Home ServicesShare

At Sestak Town Hall, Disability Activists Draw Their Own Red Line on Long-Term Care Funding

4) Announcements and Additional Resources

New NCIL "Policy Shop" Ready for Busy Fall Congressional Session

NCIL Welcomes new Policy Analyst, Lacy Pittman

Proposal for a Community First Choice (CFC) Medicaid State Option for Inclusion in Healthcare Reform

1) What's Happening in the Nation's Capital?

NCIL Meets with Whitehouse to Discuss Community First Choice Option

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 attached 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.

Learn more about the Community First Choice Option under Additional Resources.

2) National News

Healthcare Update

The biggest news in healthcare and long-term care reform over the last week was the passing of Senator Edward M Kennedy of Massachusetts. While NCIL and the rest of the nation mourn his loss and celebrate his life, political insiders are already assessing the impact this will have on the healthcare reform process. There are several issues emerging that relate to the loss. One concern is the absence of his skill and leadership in the Senate, and how that will hinder the ability of Congress to navigate the difficult path to successfully reform our healthcare and long-term care systems. Senator Kennedy was known as someone who could reach across the aisle to Republicans to get meaningful compromises on important reforms. Senator Kennedy was liked and respected by many of his colleagues in the Senate and used his relationships and skills to make progress. Some analysts feel that his void may be too great to overcome.

Another issue is that Senator Kennedy was the potential 60th vote needed to ensure the Senate passage. Senators could "filibuster" a piece of legislation on the floor, unless 60 or more Senators vote for "cloture", which would end debate and move the bill forward to be voted on. This means that in theory, if a bill was filibustered by Republicans, Democrats might have been able to override it and pass the bill with only 51 votes.

The third issue that political analysts are looking at is how the death of the Senator will stem outrage and allow a constructive debate to proceed. It is not expected that Congress will simply pass reform to honor the Senator, as this issue is so big and decisive, but it could motivate some members who are hesitant or on the fence to support comprehensive reform.

Six Senators on the Senate Finance Committee have begun to meet by phone or webcast to work on agreements towards a bipartisan bill. There has been doubt cast over the ability of these Finance Committee members to reach an agreement in light of comments by the Republicans that indicate they have been purposely slowing the progress of the bill down, and that they would only support a bill with 70-80 votes in the full Senate. Democrats have also caused controversy by suggesting that they might support the process known as "reconciliation". Reconciliation is a specific process to move legislation through the budget process, as opposed to a stand-alone bill. The reconciliation process is not subject to a filibuster and would only need a simple majority of votes, making it potentially easier for Democrats to pass a bill in the Senate. The down side of that process is that the entire healthcare reform legislation could not be passed this way. Only parts of the healthcare reform legislation that affect the federal budget in a positive or negative manner could be included. Parts of the bill that have no effect on the budget would have to be put into a separate bill. The Senate has been informally shooting for a deadline of September 15th to have a bill ready to begin mark-up in their Committee. To this point, very little is known about what is in the Finance Committee version of healthcare reform, and this has slowed the entire process down, as the other four Committees in Congress are looking to the proposal to deal with expanding coverage while not exploding the federal budget.

In the House, the Energy and Commerce Committee staff, the last committee of three House Committees to pass a version of HR 3200, has been working on preparing for additional amendments to their bill. That is unusual because typically amendments are offered and voted on after a bill has been passed out of the committee. The Energy and Commerce Committee is working with the Rules Committee in the House to figure out how this can be done. What is promising is that a healthcare bill is close to being put on the floor of the House of Representatives for a vote - closer than ever to seeing reform become a reality. The effort is far from over, as there are many unknowns in the Senate Finance version and all five different versions need to be one final version, passed out of both the House and Senate, before the President can sign anything. If reform still happens, it will be a lot closer to the New Year than expected.

For more information about the healthcare and long-term care reform process happening in Washington DC, contact NCIL Policy Analyst Jason Beloungy at 202-207-0334 (toll-free 1-877-525-3400), ext. 1008.

Senior Groups Reject Healthcare 'Scare Tactics'

Source: National Public Radio

At high noon on one of the hottest days of the summer, a small group of senior citizens sweated it out in front of state GOP headquarters in Raleigh, N.C., asking the Republican Party to stop using what they called "scare tactics" to turn senior citizens against overhauling the health care system. It could be the start of a silver backlash against what some say is a misinformation campaign about health care reform.

The members of the Alliance for Retired Americans were angry about a recent column by national GOP Chairman Michael Steele, who said health care reform would lead to rationing for the elderly and deep cuts to Medicare. Protester Michael Gravinese says that's not true - and he thinks Steele is trying to frighten seniors like him

"It's pretty blatant and obvious what they're doing," Gravinese says. "And that's not for the good of the country. Let's have a reasoned, honest debate about health care." Read More.

Recent Rulings Against P&As Underscore the Importance of the Circuit Court of Appeals

Two bad decisions were made by the Fourth and Seventh Circuit Courts of Appeals this summer. In both cases, two separate state Protection & Advocacy agencies were attempting to get peer review records in order to investigate deaths or injuries in state owned and operated institutions for individuals with disabilities. Before reading details about these cases below, NCIL would like to remind members why we spend time being engaged in judicial nominations for the federal Circuit Court of Appeals. In the example below, you can see how one Circuit Court's bad decision created an almost immediate precedent for another. The Fourth Circuit Court of Appeals, which offered the first decision, is the same court that Judge Andre Davis has been nominated for. NCIL strongly opposes Judge Davis' confirmation to this court.

The U.S. Senate confirms these federal judges and every NCIL member has two U.S. Senators who can vote for or against future nominees. NCIL hopes these two cases shed light on the importance of the grassroots being involved in the nomination of federal judges, in addition to Supreme Court Justice.

The Fourth Circuit held in VOPA v. Reinhard that state agency P&As could not sue state officials in federal court for violating the access provisions of the DD and PAIMI Acts. The immediate consequence of this decision is that the Virginia P&A, which is a state agency P&A, would have to enforce its access authority by getting an order from the Virginia State Supreme Court or by suing in one of the many Virginia state trial courts. The Seventh Circuit Court of Appeals has followed this decision in Indiana Protection and Advocacy Services v. Indiana Family and Social Services Administration. If other circuits adopt the reasoning of the Fourth and Seventh Circuits, state agency protection and advocacy agencies could be unable enforce their access authority in federal court.

The Seventh Circuit decided in Indiana Protection and Advocacy Services v. Indiana Family and Social Services Administration that P&As have no private right of action to enforce their access authority in court. In other words, the Seventh Circuit has held that P&As cannot sue to enforce their access authority in any court. The court suggests that the only remedy for violating the access statutes would be termination of federal funding under the DD and PAIMI Acts.

Both cases were decided by three-judge panels. The Virginia and Indiana P&As filed petitions for rehearing to seek review by the full court. The National Disability Rights Network filed amicus briefs in support of both P&As. The United States filed an amicus brief in support of the Virginia P&A in the Fourth Circuit case. However, the Fourth Circuit ultimately denied the petition for rehearing by the full court. The Virginia P&A is deciding whether to file a petition for certiorari, which a losing party files with the Supreme Court asking it to review the decision of a lower court. The United States also intends to file an amicus brief (a testimony that has not been solicited by any of the parties, or a learned treatise on a matter that bears on the case. The decision whether to admit the information lies with the discretion of the court in support of the Indiana P&A's petition for rehearing if the U.S. Solicitor General approves. The Seventh Circuit has not yet made a decision on the petition for rehearing.

3) State News

Tell Illinois Governor Quinn to Stop Cuts to Home ServicesShare

Source: Access Living

Cuts to the Department of Human Services Home Service Program pose threats to the independence of persons with disabilities. Thousands of people with disabilities around Illinois use Personal Assistant services and coordinators to allow them to live in their own homes rather than in costly nursing homes. This program saves the state tens of millions of dollars a year, and gives consumers the opportunity to live with dignity as members of their communities.

These cuts include:

Cuts in service hours for Home Service Program leading to deteriorating quality of life for people with severe disabilities
Elimination of Personal Assistant Programs that help consumers hire and manage their Home Services and have control over the care they receive.
Threats to lower asset limits for people getting Home Care leading to unemployment and impoverishment for people with disabilities who work

You Can Help! Call Illinois Governor Quinn at: (312) 814-2121. Tell Him. You made a mistake. Stop the cuts to Home Services Now.

At Sestak Town Hall, Disability Activists Draw Their Own Red Line on Long-Term Care Funding

Source: Huffington Post, by Daniel Denvir

I scanned the aisles for mustachioed presidential portraits and Obamacare warning-signs at a health care town hall with Rep. Joe Sestak (D-PA) in Philadelphia. "Before we get started," intoned the understated moderator, "we know that these meetings here in the Commonwealth have been somewhat heated."

Yesterday's meeting was hosted by Liberty Resources, an organization that promotes independent living for disabled people, and the Philadelphia chapter of ADAPT, a seriously militant disability rights organization. But the town hall with Sestak, who is challenging Republican-turned-Democrat Senator Arlen Specter in the party primary, went uninterrupted, the ground rules unchallenged. No teabaggers showed up. No screaming. No fearful questions about "death panels" or socialism, national or otherwise. Yet the nearly 200 disability rights activists that showed up were mad.

For disability rights activists, the public option--which they do support--isn't the only red line that Democrats shouldn't cross. Activists say they will oppose any bill that fails to include the core provisions of the Community Choice Act, legislation that gives in-home long-term care the same funding priority as nursing home care. These people want to live independently--an option that, fiscal watchdogs be advised, turns out to be almost three times cheaper than institutional care.

As I wrote in a piece this June about the situation in Pennsylvania: Federal and state Medicaid law requires that disabled people receive a state-granted waiver to get reimbursed for homecare, making the system highly biased toward placing people in institutions. This is the system's default setting, especially for the elderly disabled.

The Community Choice Act would change what activists call the "institutional bias" in long-term care funding. This is the "rationing" that actually takes place under our current system. While the House legislation didn't include these long-term care provisions, activists are hopeful that Senate allies will come through and that a comprehensive bill will make it out of conference.

In a debate dominated by crazed, gun-toting teabaggers and a series of incoherent Democratic proposals, disability rights activists present a different--and undercovered--angle on health care reform. The room full of people with chronic health care needs offered a poignant counterpoint to the crazies who have terrorized politicians over the past weeks, people more concerned with obscure and tenuous historical comparisons (circa 1933) than an everyday person's very real problems.

ADAPT was out in full force in orange shirts emblazoned with their trademark logo of a person in a wheelchair breaking free of her chains. Indeed, ADAPT says they secured the meeting after they blockaded a Sestak town hall two weeks back (although I wasn't able to confirm this independently), protesting the fact that the event wasn't accessible. These are amazing political activists, people who excel in chaining their wheelchairs to things in order to get a point across. Read More.

4) Announcements and Additional Resources

New NCIL "Policy Shop" Ready for Busy Fall Congressional Session

NCIL has gone through staff changes over the last few months. Healthcare Policy Fellow Jason Beloungy was hired for a permanent position as a Policy Analyst in June. NCIL Policy Analyst Elizabeth Leef departed for a position with the Administration on Aging in July. Elizabeth was replaced by Lacy Pittman, who began her position in early August. To help members know which staff person is working on the issues that matter to members, here is a list of the Subcommittees and Taskforces that Jason and Lacy currently staff:

Jason

Healthcare
Personal Assistance Services
Rehab Act/IL Funding
Employment
ADA/Civil Rights
Voting Rights Taskforce
Judicial Nominations
ADRC Taskforce

Lacy

Housing
Assistive Technology
Education/IDEA
Transportation
Veterans
ADA/Civil Rights
Violence and Abuse Taskforce
Mental Health Taskforce
SEIU Taskforce
CANAR Taskforce

NCIL Welcomes new Policy Analyst, Lacy Pittman

Lacy Pittman was raised in Memphis, TN. At a young age, she had trouble paying attention and had difficulty in reading and comprehension which affected her academic pursuit greatly. After being diagnosed with a non-apparent disability, she discovered methods to effectively manage it and these tools influenced and improved her daily life.
Upon graduating from high school, she attended the University of Tennessee (UT). At UT, she was an active participant of several extra-curricular activities like the U.S. Business Leadership Network (USBLN), National Youth Leadership Network (NYLN), UT's Career Services Committee, and Boling Center for Developmental Disabilities (Community Advisory Committee). Also, she completed a 10-week long internship with the United States Department of Agriculture in the Foreign Agriculture Service as an Agricultural Marketing Assistant through the Workforce Recruitment Program. These experiences greatly influenced her passion for advocating for people with disabilities.

After graduating from UT, she worked in banking but in her spare time, she pursued her passion by volunteering for organizations that promote disability awareness. Currently, she serves NYLN as the Advocacy Committee Chair, Governing Board member, and Resource Consultant where she has participates in the Rural People, Rural Policy grant through the W.K. Kellog Foundation, and serves on USBLN's Student Advisory Committee. By becoming active in these organizations and learning about important issues, she accepted the position of Policy Analyst with NCIL.

Proposal for a Community First Choice (CFC) Medicaid State Option for Inclusion in Healthcare Reform

The core elements of the Community Choice Act (found in Section 101 of the bill) would be structured as an option for states to include in their Medicaid State Plans. The Community First Choice (CFC) Option would provide individuals with disabilities who are eligible for nursing homes and other institutional settings with options to receive community-based services. CFC would support the Olmstead decision by giving people the choice to leave facilities and institutions for their own homes and communities with appropriate, cost effective services and supports. It would also help address state waiting lists for services by providing access to a community-based benefit within Medicaid. The option would not allow caps on the number of individuals served, nor allow waiting lists for these services. A significant enhanced FMAP would be provided, depending on cost, to encourage states to select this option.

Summary of Core Provisions - This is a summary of core provisions that should be included. The complete language should be drawn from S. 683/H.R. 1670. Detailed language can be provided.

Amend Medicaid to allow state Medicaid plan coverage of community-based attendant services and supports for certain Medicaid-eligible individuals.
Services under this option would include services to assist individuals with activities of daily living (ADLs), instrumental activities of daily living (IADLs), and health-related tasks through hands-on assistance, supervision, or cueing. ADLs include eating, toileting, grooming, dressing, bathing, and transferring. IADLs include meal planning and preparation; managing finances; shopping for food, clothing, and other essential items; performing essential household chores; communicating by phone and other media; and traveling around and participating in the community. Health-related tasks are defined as those tasks that can be delegated or assigned by licensed health-care professionals under state law to be performed by an attendant. Services also include assistance in learning the skills necessary for the individual to accomplish these tasks him/herself; back-up systems; and voluntary training on selection and management of attendants. Certain expenditures would be excluded, including room and board; services provided under IDEA and the Rehabilitation Act; assistive technology devices and services; durable medical equipment; and home modifications.
Services must be provided in a home or community setting based on a written plan.
Services must be made available statewide and must be provided in the most integrated setting appropriate for the individual.
Services must be provided regardless of age, disability, or type of services needed.
States will establish and maintain a comprehensive, continuous quality assurance system, including development of requirements for service delivery models; quality assurance to maximize consumer independence and consumer control; and external monitoring; along with other critical state and federal responsibilities/requirements included in S. 683/H.R. 1670.
Service delivery models must include consumer directed, agency-based, and other models, along with requirements to comply with all federal and state labor laws.
States would be required to establish a Development and Implementation Council to work with the state in developing and implementing the state plan amendment necessary in order to provide the services. The majority of Council members must be individuals with disabilities, elderly individuals, and representatives of such individuals, and must collaborate with, among others, providers and advocates.
States would cooperate in reporting to Congress.
CFC services would not affect the states' ability to provide such services under other Medicaid provisions.

Contact the Editor: Eleanor@ncil.org

To advertise in the Weekly Advocacy Monitor, contact the Editor.

SEANLKELLY

NCIL WEEKLY ADVOCACY MONITOR (WhAM) 09-14-09

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Posts: 215

09/14/09 12:58:37

National Council on Independent Living

Weekly Advocacy Monitor

Volume 7, Issue 27 September 14, 2009

1) What's Happening in the Nation's Capital?

President Obama Uses Address to Congress to Push Reform

Act Now: Davis Nomination to Move Next Week

2) National News

Harkin Becomes HELP Committee Chairman

NCIL Now Pushing the Community First Choice Option in Healthcare Reform

Senate Finance Committee Releases Framework of Bill

3) State News

New York State Discriminated Against People with Mental Illness, Judge Rules

Florida Teacher Retains Job, District Told It Can't Fire Her Over Abuse of Students with Disabilities

4) Announcements and Additional Resources

Save the Date! SILC Congress 2010

Independent Media 2.0: NYLN's Teleconference on Blogs & Social Media!

Catch HHS' Ear: Healthy People 2020 Meetings Announced

1) What's Happening in the Nation's Capital?

President Obama Uses Address to Congress to Push Reform

On Wednesday evening, President Obama delivered an address to a Joint Session of Congress. In his Speech he stated that his reforms would, "provide more security and stability to those who have health insurance… provide insurance for those who don't. And it will slow the growth of health care costs for our families, our businesses, and our government. The President then went on to outline more about what his plan means for people who have health insurance: "Here are the details that every American needs to know about this plan. First, if you are among the hundreds of millions of Americans who already have health insurance through your job, or Medicare, or Medicaid, or the VA, nothing in this plan will require you or your employer to change the coverage or the doctor you have."

The President then talked about issues that impact people with disabilities: "Under this plan, it will be against the law for insurance companies to deny you coverage because of a preexisting condition. As soon as I sign this bill, it will be against the law for insurance companies to drop your coverage when you get sick or water it down when you need it the most. They will no longer be able to place some arbitrary cap on the amount of coverage you can receive in a given year or in a lifetime. We will place a limit on how much you can be charged for out-of-pocket expenses, because in the United States of America, no one should go broke because they get sick".

President Obama also talked about the importance of a Public Health Insurance program to ensure choice, competition and affordability. Finally, he spoke about his ideas for paying for the reform without adding to the national deficit. He said that we can offset new costs by reform to the current healthcare system and by curbing fraud and abuse in Medicare. To close the speech, President Obama invoked the memory of the late Senator Kennedy and reflected on a letter that the Senator had written to the President in May. The next few weeks will show how effective the speech was at getting Congress and the rest of the country behind meaningful reform.

Read the President's speech.

Act Now: Davis Nomination to Move Next Week

Oppose Judge Davis to the Fourth Circuit Court of Appeals! NCIL has strongly opposed the nomination of Judge Andre Davis to the Fourth Circuit Court of Appeals, and has learned that the nomination may move to a floor vote in the full Senate next week.

Call both of your U.S. Senators today and tell them to VOTE NO to confirm Judge Andre Davis to the Fourth Circuit Court of Appeals based upon your strong concerns about his disability employment discrimination record. You can remind your Senators that the Fourth Circuit Court of Appeals has historically been hostile to people with disabilities, and that this nomination will not change that.

In last week's WhAM!, NCIL shared a ruling by the Fourth Circuit Court of Appeals that limited the rights of state Protection and Advocacy organizations to sue institutions in federal court. NCIL feels that by adding Judge Davis to the Fourth Circuit, this court will continue to hand down rulings that are detrimental to people with disabilities.
If you have questions, please contact NCIL Policy Analyst, Jason Beloungy, at 202-207-0334 (toll-free 1-877-525-3400) ext. 1008. Jason can also be reached by e-mail at jason@ncil.com.

2) National News

Harkin Becomes HELP Committee Chairman

Last Wednesday, Senator Chris Dodd (D-CT) announced that he would retain his Chairmanship of the Senate Banking Committee, opening the door for a replacement to Chair the Senate Health, Education, Labor and Pensions (HELP) Committee. Senator Dodd assumed many of the responsibilities of the Chairmanship until Senator Ted Kennedy passed away late last month. Disability advocates were pleased to learn that long-time ally, Senator Tom Harkin (D-IA), would relinquish his chairmanship of the Senate Agriculture, Nutrition and Forestry Committee, and assume Chairmanship of the HELP Committee. In this position Senator Harkin will be stepping into a leading role in the healthcare reform process. The HELP Committee has already passed a bill, but once the Senate Finance Committee passes their version, the two Committees will have to merge the two bills into one, which will then be voted on by the full Senate. NCIL is hopeful that with Senator Harkin as Chair of the HELP Committee, the Senate can come up with a bill that best addresses the barriers to health insurance, healthcare and long-term care that exist for millions of people with disabilities.

NCIL Now Pushing the Community First Choice Option in Healthcare Reform

NCIL continues to vigorously support the Community Choice Act (CCA) as a stand-alone bill.

For the last several months, NCIL has been working hard in Washington to ensure that the needs of people with disabilities are addressed in healthcare reform, while educating NCIL members about what is going on and how they can be involved.

Since the beginning of this process, NCIL has clearly stated its priorities in an effort to integrate the needs of the disability community into healthcare reform legislation, including language to end the institutional bias in Medicaid. It has been our unwavering goal to have the language of the CCA in the final reform bill, and our policy to pursue a compromise only if it became very clear that the CCA would not be a part of the reform legislation. Over the course of the last few weeks, that fact has been made very clear to disability advocates in Washington and throughout the nation. It is now time NCIL and the rest of the disability community pursue compromise in order to advance progress in our fight to end the institutional bias.

Senate Finance Committee Releases Framework of Bill

Senate Finance Committee Chairman Max Baucus released a document last week outlining the framework of that Committee's healthcare reform legislation, which will be released this week. While three House Committees and one Senate Committee have passed a version of a bill out of their respective committees, the Senate Finance Committee has been working behind closed doors on their own bill. Much of the delay has come from the bipartisan negotiations between six senators , known as the "Gang of Six". This Gang of Six includes Republican Senators Grassley, Enzi and Snowe, as well as Democrats Baucus, Conrad and Bingaman. In the document, Senator Baucus outlined major areas of reform to be covered in the legislation, including:

Creation of a Health Insurance Exchange for the small group and non-group market to allow for simple and efficient comparison of benefit plans and costs
Health Insurance Companies would be required to offer coverage on a guaranteed basis and would be prohibited from denying or cancelling coverage based on pre-existing conditions
An individual and employer mandate to have health insurance. Hardship and religious exemptions would be allowed, but the mandate would be supported by the subsidies listed above
Health insurance companies could not place caps or limits on coverage
Federal funding for start-up costs to create health insurance co-ops that would be non-profit and member-run. This is viewed as an alternative to the full public health insurance program
Funding for Money Follows the Person Grants (no other details)
Funding for Aging and Disability Resource Centers (ADRC)(language likely from the project 20/20 legislation, no details in outline)
A new Office of Coordination for Dual Eligible (Medicare and Medicaid) Beneficiaries
New standards to evaluate health disparities of people with disabilities
Pilot program to encourage bundling of post-acute care services to achieve Medicare savings
Elimination of the 1st-month purchase option for power wheelchairs in Medicare
Improved transparency of nursing home information (no details in outline)

For more details, read the outline (PDF).

To be clear, this is only the framework of the bill that the Finance Committee is expected to release this week. There was not much explanation for these proposals at this time, but NCIL will keep members informed once the bill is released and will be urging our members to be involved in the healthcare reform debate. NCIL did not see any proposals for changes to long-term care, elimination of the 2-year wait for Medicare, or efforts to create access standards for examination and diagnostic equipment in medicals and dental clinics.

3) State News

New York State Discriminated Against People with Mental Illness, Judge Rules

Source: New York Times, by James Barron

New York State discriminated against thousands of [people with mental illness] in New York City by leaving them in privately run adult homes, which effectively replaced state-run psychiatric hospitals more than a generation ago but turned out to be little more than institutions themselves, a federal judge ruled on Tuesday.

The judge, Nicholas G. Garaufis of Federal District Court in Brooklyn, ruled that the state was violating the Americans with Disabilities Act by housing more than 4,300 [people with mental illness] in New York City in more than two dozen adult homes. He said the residents had little hope of mingling with anyone in the wider community.

The nonprofit group that sued the state had asked Judge Garaufis to tell state officials they could no longer steer [people with mental illness] into adult homes. He stopped short of that but directed the state to submit a "remedial plan" by mid-October.

Florida Teacher Retains Job, District Told It Can't Fire Her Over Abuse of Students with Disabilities

Source: Herald Tribune, by Kim Hackett

Editor's Note: This story has not been edited to reflect people first language.

Venice Elementary School special education teacher Diana O'Neill will be suspended and undergo a job change but she will not be fired, as the Sarasota School District had desired, an employment arbitrator ruled Tuesday.

O'Neill was under fire after she was accused by the district of hitting, kicking, pushing and otherwise abusing her severely disabled students. She was arrested and charged with four counts of child abuse, but was acquitted of those charges in February.

Following the acquittal, the district sought to have O'Neill fired, arguing that her treatment of four profoundly disabled students was a "flagrant violation of her responsibilities as a teacher."

While finding that O'Neill got rough with her students - including hitting them on the head with water bottles, kicking a student and pulling the skin off the lip of another - arbitrator Mark Lurie said because the district knew about O'Neill's behavior but never disciplined her for her misconduct or even gave her a verbal warning, she could not be fired. The decision cannot be appealed.

Venice Elementary School Principal Theresa Baus said she talked to O'Neill about her behavior and warned her not to hit or hurt the students, but never notified her that she was being given a verbal warning.

None of O'Neill's actions made it into her personnel file and no one who witnessed her getting physical with students ever called the Child Abuse Hot Line, as required by law, Lurie wrote.

It was not until two classroom aides came forward in January 2008, with a log detailing what they say are dozens of instances of abuse, that Baus called the hot line after being advised by her bosses to do so.

Lurie ruled that after a four-week suspension and counseling O'Neill be allowed to return to her $80,000-a-year teaching job, or one similar. Read More.

4) Announcements and Additional Resources

Save the Date! SILC Congress 2010

SILC Congress 2010 in Summerlin, Nevada (suburb of Las Vegas) January 3-5, 2010, at the JW Marriott Resort.

Independent Media 2.0: NYLN's Teleconference on Blogs & Social Media!

Curious about the hype behind blogs, youtube, twitter, podcasts and zines? Join NYLN on Monday September 21st at 8 pm est, for a teleconference & webcast on independent media. We will have national media experts talk about how they use free, accessible media tools to build community and advocate for people with disabilities. We promise--- you won't want to miss this!!

Monday September 21 at 8 pm EST / 7 pm CST / 6 pm MST / 5 pm PST / 4 pm Alaska / 3 pm Hawaii

Speakers Include: Moya Bailey, Quirky Black Girls founder; Anita Cameron, ADAPT media maker; Cripchick, feminist blogger; Ari Ne'eman and Melanie Yergeau, organizers with the Autistic Self Advocacy Network

To sign up, visit www.nyln.org and click the link at the bottom of the page!

Catch HHS' Ear: Healthy People 2020 Meetings Announced

The Centers for Disease Control has announced that registration is now open for the 2009 "Healthy People 2020" Public Meetings. Every ten years the U.S. Department of Health and Human Services publishes this report which provides science-based, 10-year national objectives for promoting health and preventing disease. This would be a good opportunity to tell HHS about issues that affect people with disabilities.

The dates and sites are as follows:

October 22, 2009: Kansas City, KS; Kansas University Medical Center
November 7, 2009: Philadelphia, PA; Thomas Jefferson University, Jefferson School of Population Health
November 20, 2009: Seattle, Washington; Red Lion Hotel on Fifth Avenue

There is no registration cost. Online registration is open at: http://www.healthypeople.gov/hp2020/regional/default.

Contact the Editor: Eleanor@ncil.org

To advertise in the Weekly Advocacy Monitor, contact the Editor.

SEANLKELLY

NCIL WEEKLY ADVOCACY MONITOR (WhAM) 09-22-09

#63

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Posts: 215

09/22/09 13:26:17

National Council on Independent Living

Weekly Advocacy Monitor

Volume 7, Issue 28 September 22, 2009

1) What's Happening in the Nation's Capital?

Obama Announces Intent to Nominate Chai Feldblum for EEOC Commissioner!

Independent Living Appropriations Update

2) National News

Act Now: Include the Community First Choice Amendment in Healthcare Reform!

Commission Approves Proposed ADA Regulations for Public Comment

Housing Choice Voucher Program Deficit Addressed by the Senate

Healthcare Reform Update

3) State News

Indiana Court Strikes Down Tough Voter ID Law

New York Advocates Outraged Over Governor Patterson's Vetoes

4) Announcements and Additional Resources

PBS Premieres "Body & Soul: Diana & Kathy"

Reauthorization of the Workforce Investment Act of 1998: Listening Session for Disability Stakeholders

1) What's Happening in the Nation's Capital?

Obama Announces Intent to Nominate Chai Feldblum for EEOC Commissioner!

WhAM! readers will remember Chai Feldblum from last year, when she decimated the opposition to the ADA Amendments Act in a hearing held by the Senate HELP Committee. Her fierce defense of the civil rights of people with disabilities was truly an amazing display, and if she is confirmed as Commissioner of the Equal Employment Opportunity Commission, she will surely work diligently to turn the tide in discrimination against people with disabilities in the workplace.

Disability, Gay Rights Expert Picked for EEOC: Source: Washington Post, by Garance Franke-Ruta

President Obama announced Monday his intent to nominate Chai R. Feldblum for Commissioner of the Equal Employment Opportunity Commission. Feldblum, a law professor at Georgetown University Law Center, previously served as legislative counsel to the AIDS Project of the American Civil Liberties Union, where she played a role in the drafting of the Americans with Disabilities Act of 1990.

"She has also worked on advancing lesbian, gay, bisexual and transgender rights" and "been a leading expert on the Employment Nondiscrimination Act," according to a biography released by the White House. Her degrees are from Harvard Law School and Barnard College, and she went on to clerk for Judge Frank Coffin on the First Circuit Court of Appeals and Supreme Court Justice Harry A. Blackmun. The EEOC has five commissioners.

Independent Living Appropriations Update

With two weeks left in the fiscal year and not a single appropriations bill ready for the president's signature, House Democratic leaders are moving forward with a continuing resolution to keep the government funded at current levels.

The Rules Committee on Tuesday will take up a continuing resolution likely to cover all government operations. The House has passed all 12 annual spending bills, but the Senate has passed only five, which still need to go to conference.

NCIL has been very pleased with the appropriations bills in the House and Senate that have provided an increase in Part C funding for the Independent Living Program (funding for Centers for Independent Living). NCIL hopes that the Senate and the House will pass their legislation with the funding increase and provide another much-needed increase to the Independent Living Program.

2) National News

Act Now: Include the Community First Choice Amendment in Healthcare Reform!

Senator Charles Schumer, (D-NY) has introduced the language of the Community First Choice option as an amendment to the Senate Finance Committee healthcare reform legislation. Last week, the Chairman of the Senate Finance Committee released his Committee's version of healthcare reform, which did nothing to end the institutional bias in Medicaid! NCIL strongly supports the Community First Choice (CFC) Amendment. More information about the CFC is included below. Now is the time to take Action. Here's what you can do:

If your Senator is on the Finance Committee: Look at the list of Senators below. These are the people who will be debating the healthcare legislation, including the Community First Choice Option amendment, this week! If your Senator is on the list, call them right away and give them this message:

"Hello. My name is [Your Name] and I am a constituent from the state of [Your State]. I am calling to urge Senator [Your Senator] to support the Community First Choice Amendment, introduced by Senator Schumer. I ask the Senator to vote for this Amendment to make it possible for citizens in our state to have a choice to get services in their own homes instead of costly and dangerous institutions!"

Senators on the Finance Committee:

Arizona: Jon Kyl (R): (202) 224-4521
Arkansas: Blanche Lincoln (D): (202) 224-4843
Delaware: Tom Carper (D): (202) 224-2441
Florida: Bill Nelson (D): (202) 224-5274
Idaho: Mike Crapo (R): (202) 224-6142
Iowa: Chuck Grassley (R): (202) 224-3744
Kansas: Pat Roberts (R): (202) 224-4774
Kentucky: Jim Bunning (R): (202) 224-4343
Maine: Olympia Snowe (R): (202) 224-5344
Massachusetts: John F. Kerry (D): (202) 224-2742
Michigan: Debbie Stabenow (D): (202) 224-4822
Montana: Max Baucus (D) [Chair of Sen. Finance Committee]: (202) 224-2651
Nevada: John Ensign (R): (202) 224-6244
New Jersey: Robert Menendez (D): (202) 224-4744
New Mexico: Jeff Bingaman (D): (202) 224-5521
North Dakota: Kent Conrad (D): (202) 224-2043
Oregon: Ron Wyden (D): (202) 224-5244
Texas: John Cornyn (R): (202) 224-2934
Utah: Orrin Hatch (R): (202) 224-5251
Washington: Maria Cantwell (D): (202) 224-3441
West Virginia: John D. Rockefeller, IV (D): (202) 224-6472
Wyoming: Mike Enzi (R): (202) 224-3424

If your Senator is NOT on the Finance Committee: If your Senators were not on the list, you can still take action and make a difference. Call your Senator(s) right away and tell them the following message:

"Hello. My name is [Your Name] and I am a constituent from the state of [Your State]. I am calling to urge Senator [Your Senator] to tell Chairman Max Baucus to support the Community First Choice Amendment, introduced by Senator Schumer. This amendment will make it possible for citizens in our state to have a choice to get services in their own homes instead of costly and dangerous institutions!"

More information about the Community First Choice (CFC) Amendment.

Commission Approves Proposed ADA Regulations for Public Comment

The U.S. Equal Employment Opportunity Commission (EEOC) today approved a Notice of Proposed Rulemaking (NPRM) revising its regulations to provide that an individual seeking protection under the Americans with Disabilities Act (ADA) establish that he or she has a disability consistent with the original, expansive intent of Congress when it enacted the ADA in 1990. The NPRM, approved by 2-1 vote, carries a 60-day period for public comment.

The NPRM makes several significant changes to the definition of the term "disability" necessitated by enactment of the ADA Amendments Act of 2008. The NPRM is posted on the Commission's website, www.eeoc.gov, along with a question-and-answer guide about the proposal and instructions for submitting public comments. The EEOC voted June 17 to adopt the rules changes, which then went to the Office of Management and Budget for review, and to federal agencies.

Consistent with the ADAAA, the NPRM emphasizes that the definition of disability -- an impairment that poses a substantial limitation in a major life activity -- must be construed in favor of broad coverage of individuals to the maximum extent permitted by the terms of the ADA, and should not require extensive analysis; that major life activities include "major bodily functions"; that mitigating measures, such as medications and devices that people use to reduce or eliminate the effects of an impairment, are not to be considered when determining whether someone has a disability; and that impairments that are episodic or in remission, such as epilepsy, cancer, and many kinds of psychiatric impairments, are disabilities if they would "substantially limit" major life activities when active. The regulation also provides a more straightforward way of demonstrating a substantial limitation in the major life activity of working, and implements the ADAAA's new standard for determining whether someone is "regarded as" as having a disability.

The 60-day public comment period on the proposed rule-making will officially commence upon publication of the NPRM in the Federal Register, which is expected to be published the week of September 21, 2009. The EEOC encourages the public to offer its views and suggestions. More information.

Housing Choice Voucher Program Deficit Addressed by the Senate

Last week, the Senate completed the 2010 Transportation, Housing and Urban Development, and Related Agencies (T-HUD) Appropriations Act, H.R. 3288. In addition, T-HUD's Chairwoman, Senator Patty Murray offered an amendment to cure the current Housing Choice Voucher Program deficit. This amendment was adopted by unanimous consent and provides $200 million to fix the projected $130 million shortfall.

The Center on Budget and Policy Priorities (CBPP) released the article "Funding Shortfalls Causing Cuts in Housing Vouchers Tens of Thousands of Low-Income Families Facing Higher Rents, Loss of Assistance This Year". According to the CBPP, the housing voucher program assists more than 2 million people with rental assistance by helping low-income families with housing by providing vouchers to pay for rent and utilities. In 2009, there was a funding deficit that affected this program. The shortage was caused by a shortfall in the projected budget and a decline in income due to the current economical climate. As a result, almost 400 state and local housing agencies are using cost cutting measures like discontinuing housing vouchers to waiting list candidates, increasing the rent for voucher recipients, and ending future vouchers.

Healthcare Reform Update

After months of speculation, and a process that was closed to all but six Senators, the Chairman of the Senate Finance Committee, Max Baucus (D-MT), released his Committee's version of healthcare reform. The legislation was met with complaints from fellow Democrats that the bill did not do enough to make health insurance affordable, did not include a public health insurance option, and burdened the middle class by taxing high-cost private health insurance benefits. Republicans were upset that the bill cost too much and did little to control the costs of healthcare. One thing was clear from the release of the legislation: this is seen as a starting point and Senators on both sides of the aisle will be ready with over 500 amendments, as the Senate Finance Committee begins its mark-up session today. There were aspects of the bill that were similar to the legislation passed out of three Committees in the House of Representatives, including creation of a health insurance exchange, subsidies to eligible people to buy health insurance in the exchange, and expansion of Medicaid to cover non-elderly, non-pregnant, childless adults. The differences lie in the amount of the subsidies and the size of the Medicaid expansion. NCIL will be working on getting out information about this legislation and how it affects people with disabilities. NCIL will also be on Capitol Hill this week pushing for our priorities.

While the release of the Senate Finance Committee legislation was highly anticipated, it was not a final step in the process to reform the healthcare and long-term care system in America. This week, the Finance Committee will mark-up their legislation by offering amendments. It is felt this process could take two weeks, as there are many amendments being offered. If the Finance Committee is successful in passing their bill, members of the Committee will need to meet with members of the Senate Health, Education, Labor and Pensions (HELP) Committee and merge the two bills into one to be voted on by the full Senate. This is expected to go well into the fall. In the meantime, the House of Representatives will be working on their legislation. If the House and the Senate pass different bills in their respective chambers, a conference committee will need to work out the differences. If this conference bill can then be passed by each chamber, it will go to the President to sign or veto.

In the House, work has been occurring to meld the three committee versions of H.R. 3200, which differ only slightly from one another. The House is also expected to consider a late package of largely noncontroversial amendments from the Energy and Commerce Committee, which were not included in the July markup of the bill because the panel ran out of time. A second markup for the leftover amendments is expected to happen on September 23rd.

3) State News

Indiana Court Strikes Down Tough Voter ID Law

Source: Associated Press, by Charles Wilson and Mike Smith

The state Court of Appeals on Thursday struck down an Indiana law requiring government-issued photo identification for voters, overturning on state constitutional grounds a strict law previously upheld by the U.S. Supreme Court.

Considered one of the nation's toughest voter identification laws, it requires that a state or federal photo ID card be presented at the ballot box. Critics have said it disenfranchises some poor, older and minority voters. Supporters contend it is needed to prevent voter fraud at the polls, which critics say is rare.

Republican Gov. Mitch Daniels called Thursday's 3-0 ruling "an act of judicial arrogance." "It would be one thing if this thing had not already been litigated from the bottom up through the federal system, and multiple court rulings - including the Supreme Court of the United States - hadn't already spoken," Daniels said.

The Indiana Democratic Party previously challenged the law in federal court, saying it violated the U.S. Constitution. But the nation's highest court upheld 6-3 in April 2008. The League of Women Voters then challenged the law in state courts, arguing it violated the Indiana Constitution by imposing a requirement on some, but not all, voters.

A Marion County judge dismissed the suit in December, but the League appealed, and this time a panel of judges ruled in its favor. In a 29-page ruling, Judge Patricia A. Riley wrote that the trial court must declare the law void because it regulates voters in a way that is not "uniform and impartial." Read More.

New York Advocates Outraged Over Governor Patterson's Vetoes

Source: New York Association on Independent Living and Center for Disability Rights

New Yorkers with disabilities were stunned last night when Governor Paterson vetoed not one, but two critical pieces of civil rights legislation. Both bills were passed overwhelmingly by the state legislature, and would require state law to conform with existing federal requirements under the Americans with Disabilities Act and the Help America Vote Act (HAVA). In response, disability advocates are calling on the state legislature to override the Governor's vetoes and ensure people with disabilities in New York are treated as fairly in New York State as they are under existing federal law.

"By vetoing these bills, the Governor is denying millions of people with disabilities fundamental civil rights," said Melanie Shaw, executive director of the New York Association on Independent Living (NYAIL). "We are appalled that that the Governor would veto two civil rights bills passed by a proportion of the Legislature sufficient to override a veto, bills that simply write existing federal rights into state law for clarification and enforcement."

"It is unconscionable and highly ironic that a governor with a disability has vetoed these bills.
We are very disappointed that, by these actions, he has failed to offer the leadership we hoped he would bring to the governor's office," said Christine Zachmeyer, NYAIL board member and chair of the New York State Independent Living Council (NYSILC).

One bill, A.781-B (Paulin)/S.5396 (Huntley), adds federal American with Disabilities Act (ADA)
Title II language into state statute, clarifying the obligations of government officials and strengthening the civil rights protections for people with disabilities. Title II of the ADA protects people with disabilities from discrimination on the basis of disability in services provided by public entities, including state and local governments. In the proposed bill, public entities would be required under state law to make reasonable accommodations-the same accommodations already required by federal law-and individuals with disabilities would gain critical access to the administrative enforcement mechanisms through the State Division of Human Rights. This bill imposes no new or additional requirements upon local governments or businesses.

Another bill, A. 584 (Cahill)/S.1058 (Addabbo), would require all polling sites to comply with the accessibility guidelines of the ADA. Across the state, polling sites are notorious for violations of the ADA, infringing on people with disabilities' right to vote. The new law will update state election law consistent with federal requirements, eliminate outdated waiver language, increase the likelihood of compliance, and increase procedures for enforcement. Inaccessible sites can either be moved, consolidated, or modifications can be made and counties can be reimbursed from pre-existing state and federal HAVA funds for costs incurred in making polling places accessible to individuals with disabilities, including the blind and visually impaired.

The Governor's vetoes come just ten days after the state was found to have violated the ADA and the Supreme Court's Olmstead decision by discriminating against people with psychiatric disabilities in adult homes in New York City. In response to that ruling, disability advocates are calling on Governor Paterson to direct the state not to appeal the decision, and to redouble efforts to produce an Olmstead plan which meets the court's requirements and a budget that implements the plan as soon as possible.

Disability advocates now call on the New York State Legislature to override these vetoes and ensure the civil rights of all New Yorkers with disabilities:

Override the Governor's veto of A.781-B (Paulin)/S.5396 (Huntley) to incorporate the provisions of Title II of the ADA into state law and strengthen protections for people with disabilities against discrimination in New York State!
Override the Governor's veto of A. 584 (Cahill)/S.1058 (Addabbo) to ensure that the state's 3.3 million voters with disabilities have access to their most fundamental citizenship right to vote!

4) Announcements and Additional Resources

PBS Premieres "Body & Soul: Diana & Kathy"

The film "Body & Soul: Diana & Kathy" chronicles the life of two of the country's most remarkable advocates for people with disabilities. Diana Braun, who has Down syndrome, and Kathy Conour, who has cerebral palsy, met three decades ago and vowed to fight to live independent lives. Fearful of being shut away in a nursing home or forced into a state-run institution, Diana and Kathy broke the rules, escaped the system, and modeled a grand experiment in independent living.

As a result of their efforts today Diana and Kathy are well-known as a tireless and dynamic pair of lobbyists and activists in the disability movement. Although Kathy is non-verbal, through the help of a mouth stick and the Pathfinder assistive communication device, she writes articles for national magazines and has a lively email correspondence with leaders in the disability rights movement. Kathy also serves on boards, and continues to lobby effectively for disability rights--Kathy was once even arrested, power chair and all. Diana drives, cooks, shops, takes care of scheduling doctor's appointments and has been Kathy's personal assistant and friend for more than 35 years.

The film chronicles a journey from their home in Springfield, IL to Washington, D.C. The trip is physically dangerous and technically illegal-Medicare rules require them to be homebound. History has shown, however the benefits of breaking rules can sometimes outweigh the risks. Although they comprise the largest minority in the United States, people with disabilities are routinely denied equal access and rights. "Body & Soul: Diana & Kathy" exemplifies the abilities of people with disabilities and helps us understand an important and complex social issue.

"Body & Soul: Diana & Kathy", will have its television premiere this fall on PBS in as part of the network's National Disabilities Awareness programming. Read More and find your local listings.

Reauthorization of the Workforce Investment Act of 1998: Listening Session for Disability Stakeholders

Date: 10/01/2009
Time: 2pm Eastern (1:00pm/Central, 12:00pm/Mountain, 11:00am/Pacific)
Length: 180 minutes
Registration: http://www.workforce3one.org/view/5000926034463890808/info

Please join Seth Harris, Deputy Secretary for the U.S. Department of Labor; Jane Oates, Assistant Secretary for the Employment and Training Administration (ETA); and Kathy Martinez, Assistant Secretary for the Office of Disability Employment Policy (ODEP) for a "listening session" focused on the reauthorization of the Workforce Investment Act (WIA) of 1998, and its impact on programs and services for people with disabilities.

We have an extraordinary opportunity to provide input to the Secretary of the Department of Labor, Hilda Solis, on the reauthorization of the Workforce Investment Act (WIA). The Secretary has asked the ETA to conduct a series of "listening" opportunities to hear from all interested stakeholders about reauthorization. The purpose of this listening session is to solicit input from disability stakeholders. ETA and ODEP will be jointly conducting this WIA reauthorization listening session on the following topics:

What is working well in WIA and should be continued?
What is not working well and should be discontinued or altered?
What opportunities does reauthorization present for innovation and change?

There will be a number of pre-scheduled five minute presentations by disability stakeholders as well as an opportunity for all participants to provide comments. Interested attendees must register at Workforce3One.org. Registrants will be able to participate in the listening session either in person at the Department of Labor or remotely via Webinar or teleconference. A teleconference number and Webinar link with access to closed captioning will be provided to those who wish to remotely attend the listening session.

If you are interested in attending the listening session in person, please contact Randee Chafkin at chafkin.randee@dol.gov. Please also contact Ms. Chafkin if you are requesting an accommodation. Space is limited and participation in person will be on a first registered basis; if there are more registrants who want to attend in person than there is space, you will be notified by e-mail prior to the session and will be able to participate by Webinar or teleconference.

Written comments are also welcome and can be submitted to: WIA.Reauthorization2009@dol.gov through October 15, 2009. This listening session will be recorded and archived on Workforce3One.org so that interested parties may access the recording and transcript at any time.

We look forward to hearing your comments and appreciate your taking the time to provide input about the WIA reauthorization. Thank you.

Jane Oates, Assistant Secretary, Employment and Training Administration
Kathy Martinez, Assistant Secretary, Office of Disability Employment Administration Policy

Contact the Editor: Eleanor@ncil.org

To advertise in the Weekly Advocacy Monitor, contact the Editor.

SEANLKELLY

NCIL WEEKLY ADVOCACY MONITOR (WhAM) 09-28-09

#64

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Posts: 215

09/28/09 13:55:23

National Council on Independent Living

Weekly Advocacy Monitor

Volume 7, Issue 29 September 28, 2009

1) What's Happening in the Nation's Capital?

Action Alert: Community NOW! National Advocacy Day

Independent Living Appropriations Update

2) National News

Community First Choice Option Makes It Into the Senate Finance Bill!

Autistic Community Condemns New Autism Speaks Campaign

SEVRA Update: More Work to be Done to Ensure Practical Outcomes for Our Community

3) State News

EEOC files Discrimination Suit Against Ohio Kroger Subsidiary

"Sins Invalid" Boldly Challenges Stereotypes in the Bay Area this October

New Jersey Cop Indicted for Severely Beating Person with a Mental Illness

4) Announcements and Additional Resources

Deadline to Apply for AAPD Paul Hearne Award is October 1, 2009

1) What's Happening in the Nation's Capital?

Action Alert: Community NOW! National Advocacy Day

The U.S. Senate is going to begin the process of merging its two versions of healthcare legislation as soon as later this week. The bill passed by the Health, Education, Labor and Pensions (HELP) Committee contains the CLASS Act. The bill currently being marked-up in the Senate Finance Committee contains the Community First Choice Option. We must all take part in a National Day of Action to ensure that these two priorities remain in the final Senate bill.

This Wednesday, September 30th, advocates from all over the nation must make their voices heard by all 100 U.S. Senators, so it is clear that healthcare reform must include the Community First Choice Option and the CLASS Act. There will be a briefing on Capitol Hill on Wednesday. Additionally, there will be a national call-in number for those who cannot be in Washington, D.C.

The Message for Senators: I strongly support the Community First Choice Option and the CLASS Act as a part of the final healthcare bill in the Senate. I urge the Senator to please support both of these priorities for people with disabilities as the Senate Finance and HELP Committees merge their bills.

If you are able to be in Washington D.C. on Wednesday: If there is any way you can make it to Washington this Wednesday, now is the time to make our voices heard and ensure that these priorities remain in the final legislation. On Wednesday, at 1:00 p.m. at the Dirksen Senate Office Building, Room SD 430, there will be a briefing to talk about these two priorities and their importance to people with disabilities! Following the briefing, all attendees will be encouraged to take one page handouts to their U.S. Senators. Having a physical presence on Capitol Hill will show how important these priorities are to people with disabilities!

If you cannot be in Washington D.C. on Wednesday: This is a short turnaround time to bring a large physical presence to the Capitol, but we still need everyone who wants to see the Community First Choice Option and the CLASS Act in the Senate healthcare reform legislation to call in to a hotline on Wednesday to share the message. That number will be provided before Wednesday and sent out in another alert. If there was ever a time to advocate for these priorities, NOW is the time! If you cannot call in on Wednesday, anytime this week is a great time!

More Information about the Community First Choice Option. For more information on the CLASS Act, see page 6 of the NCIL Policy Priorities Booklet (PDF).

If you have additional questions about the priorities, the Community Now! National Advocacy Day, or the healthcare reform process, contact Jason Beloungy, NCIL Policy Analyst, at 1-202-207-0334 (toll-free: 1-877-525-3400) ext. 1008. You can also e-mail Jason at: jason@ncil.org.

Independent Living Appropriations Update

With the end of the Federal Fiscal Year this Wednesday, Congress needed to ensure that the Federal Government did not shut down on Thursday, the beginning of FY 2010. Since none of the appropriations bills have achieved final passage, the House of Representatives passed a Continuing Resolution, to fund the government at 2009 levels until October 31st. The Senate is expected to take up the measure on Tuesday of this week. NCIL will continue to monitor appropriations developments to keep our members up-to-date on developments with Independent Living funding.

2) National News

Community First Choice Option Makes It Into the Senate Finance Bill!

The Senate Finance Committee was the hottest show in Washington last week as it began marking-up the bill it has worked on for months behind closed doors. Last week Senate Finance Committee members were busy offering up an astounding 564 amendments to the legislation, known as the "America's Healthy Futures Act of 2009" or the Chairman's Mark. To shorten the debate, the Chairman accepted some of the amendments and added them to his Mark, including Community First Choice Option Amendment! Getting the CFC into the Chairman's Mark was a big victory and will help move America toward ending the institutional bias in Medicaid, if we act boldly to ensure it is included in the legislation signed into law.

NCIL Policy Analyst Jason Beloungy attended the first day of the mark-up on Tuesday of last week. While there was a lot of fanfare about this event, it was mostly an exhibit of political posturing as each member of the Senate Finance Committee was given time for opening remarks. The remarks filled the entire morning session of the mark-up and started off the afternoon as well. Only a few amendments were actually debated and voted on during the afternoon. This left many people wondering how the Committee planned to get through 500 amendments in two weeks.

Senator John Kerry (D-MA) offered an amendment to reduce the amount of decrease in payments for home health care delivery. The Senator correctly pointed out that home health care is highly desired by the elderly community, improves outcomes and is substantially less expensive than institutional or hospital care. He noted that home health care was taking a larger percentage hit than any other area, and that such priorities were misplaced (Huffington Post).

Many hope that the Senate will be able to merge this bill with that passed by the HELP Committee soon, so that the legislation can be debated by the full Senate in October. Even after the bills are merged, the Senate will wait for the Congressional Budget Office (CBO) to provide a cost-estimate. According to the CBO Director, that process would likely take around two weeks.

This week, the Finance Committee staff will be working to eliminate duplicate amendments and negotiate other amendments so there are not so many to debate and vote on. Amongst the list of amendments not yet in the bill are amendments concerning a continuation of the Money Follows the Person demonstration program and legislation to create and fund Aging and Disability Resource Centers (ADRCs) throughout the country. This legislation is also known as Project 20/20 and has provisions to fund ADRC grants to states, wellness and prevention services for seniors, and a nursing home diversion program for people over the age of 75.

NCIL will be monitoring these issues closely and will be involved on Capitol Hill as your voice in this process. If you have questions about the healthcare reform process, contact Jason Beloungy, NCIL Policy Analyst, at 1-202-207-0334 (toll-free: 1-877-525-3400) ext. 1008. You can also e-mail Jason at: jason@ncil.org.

Autistic Community Condemns New Autism Speaks Campaign

ASAN issued the following press release September 23 condemning Autism Speaks' unethical and offensive "I Am Autism" advertising campaign:

The autism community reacted in horror today to Autism Speaks' new "I am Autism" campaign, presenting Autistic people as kidnap victims and burdens on their family members and communities.

"I am autism. I have no interest in right or wrong. I will plot to rob you of your children and your dreams….And if you're happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain," says the "I am Autism" video, released yesterday and created by Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann.

"This is the latest in a series of unethical fundraising strategies adopted by Autism Speaks," said Ari Ne'eman, an adult on the autism spectrum and President of the Autistic Self Advocacy Network (ASAN). "This type of fear mongering hurts Autistic people, by raising fear and not contributing in the slightest to accurate understanding of the needs of Autistic adults and children." ASAN's Columbus, Ohio chapter has already made arrangements to protest Autism Speaks' upcoming local fundraising walk and other ASAN chapters will be making similar arrangements shortly, said Ne'eman.

In addition to relying on fear and pity mongering to raise funds, the Autism Speaks video repeats frequently referenced claims of higher than average divorce rates amongst parents of Autistic children. However, a 2008 study conducted by HarrisInteractive for Easter Seals in cooperation with the Autism Society of America found divorce rates for parents of Autistic children lower than those for families with no children with disabilities. The video also relies heavily on the idea of rapidly increasing autism rates. Another new study, released the same day as the video, by the British Government's National Health Service found that autism rates among adults are the same as amongst children, indicating that the popular "epidemic" claim of rapidly increasing autism incidence is likely false. Read More or, if you have the stomach, watch the video.

SEVRA Update: More Work to be Done to Ensure Practical Outcomes for Our Community

The Section 8 Voucher Reform Act (SEVRA) was passed out of the House Financial Services Committee in July and the next step will be consideration by the full House of Representatives. This important legislation will solidify the housing voucher program and encourage state and local housing agencies to help families that are on the verge of poverty and homelessness. SEVRA provides four important initiatives: establish a secure voucher funding system, simplify the rent payments rules, develop affordable housing with "project based" vouchers, and provide agencies with the tools to ensure that tenant buildings are habitable.

SEVRA has some strengths. It would establish a secure system for distribution and funding and provide agencies with tools and incentives to assist more families. These provisions would decrease the chances for agencies to eliminate vouchers due to funding availability.

SEVRA will allow Congress and PHAs to consider economic instability and market fluctuations when calculating voucher appropriations and the number of vouchers to be disbursed. Still, when requests for vouchers exceed allotted funding, PHAs will be required to cut costs, which could include eliminating some vouchers.

Although SEVRA has the potential to improve the current housing deficit, it also creates several problems. SEVRA threatens the expansion of the U.S. Department of Housing and Urban Development's (HUD) program "Moving-to-Work" (MTW), which allows HUD and Public Housing Authorities (PHAs) some flexibility. Over the years, this flexibility has prevented rent increases and created some useful policy enforcements. MTW forbids policies like substantial increases in rent and time limits on assistance. In order to make sure MTW is effective, rigorous evaluations have been incorporated to monitor progress and track outcomes.

In SEVRA, MTW will be expanded and renamed the "Housing Innovation Program" (HIP), which will make consumers part of a demonstration project that would be difficult for HUD to evaluate, impeding positive change. HIP will allow HUD to raise the number of participating agencies who receive vouchers from 30 to 80.

Congress should revise a provision that mandates all adults who receive voucher assistance to provide specified forms of identification. This will create a burden for people with disabilities, who are much less likely to have these specified forms of identification.

The Center on Budget and Policy Priorities believes SEVRA will reduce administrative burdens for housing agencies and private owners, strengthen work supports, and provide more flexible and effective assistance to low-income families. More information from the Center on Budget and Policy Priorities.

3) State News

EEOC files Discrimination Suit Against Ohio Kroger Subsidiary

Source: Denver Business Journal, by Ed Sealover

The Equal Employment Opportunity Commission has filed a lawsuit against Dillon Companies Inc., operator of the King Soopers supermarket chain in Colorado, alleging it discriminated against a learning-disabled employee at a Lakewood store. According to the suit, filed Friday in U.S. District Court, two supervisors allegedly harassed and taunted courtesy clerk Justin Stringer because of his disability. Store officials then terminated Stringer, an 11-year employee, in June 2006.

The lawsuit seeks unspecified monetary relief, including compensatory and punitive damages and compensation for emotional pain and suffering. It also asks that Dillon Companies carry out policies and programs that provide equal employment opportunities for people with disabilities and that Stringer be reinstated or given front pay and job-search expenses. Dillon Companies is a unit of Cincinnati-based Kroger Co.

"Unfortunately, individuals with learning disabilities continue to be the object of harassment by those who would like to replay the sophomoric pranks of schoolyard bullies," EEOC Regional Attorney Mary Jo O'Neill said in a news release. "Lawsuits such as this one will remind employers that employees with disabilities must be treated with the same dignity and respect as other valuable members of the work force." A spokesman for King Soopers did not immediately respond to a request for comment.

Stringer, who has a severe learning disability and is "substantially limited in the major life activity of learning," had worked at the store since 1995 and been written up only once when new management took over in 2005 and 2006, according to the lawsuit.

Some of the new supervisors taunted him because of his disability, according to the lawsuit. One manager would threaten to call Stringer's mother, which caused him to become upset and agitated, and commented that she didn't want to "baby-sit" Stringer, according to the suit. On June 22, 2006, the two store leaders changed his break "because they thought it would be funny to watch him get upset" and then threatened to call his mother while walking toward a phone booth, the lawsuit alleged. Stringer tried to get a manager to stop calling his mother and then was terminated for insubordination and misconduct relating to his actions, the suit alleged.

The employment practices at the store were carried out with malice or with reckless indifference to Stringer's rights, according to the lawsuit. Thus, supervisors and managers created a hostile work environment and terminated him unlawfully, the lawsuit further alleged.

"Sins Invalid" Boldly Challenges Stereotypes in the Bay Area this October

October 2 - 4, 2009

Get more information and tickets.

Description: Sins Invalid is a performance project that incubates and celebrates artists with disabilities, centralizing artists of color and %**%@ and gender-variant artists as communities who have been historically marginalized. Our performance work explores the themes of sexuality, embodiment and the disabled body. Conceived and led by disabled people of color, we develop and present cutting-edge work where normative paradigms of "normal" and "sexy" are challenged, offering instead a vision of beauty and sexuality inclusive of all individuals and communities.

We define disability broadly to include people with physical impairments, people who belong to a sensory minority, people with emotional disabilities, people with cognitive challenges, and those with chronic/severe illness. We understand the experience of disability to occur within any and all walks of life, with deeply felt connections to all communities impacted by the medicalization of their bodies, including trans, gender variant and intersex people, and others whose bodies do not conform to our culture(s)' notions of "normal" or "functional."

New Jersey Cop Indicted for Severely Beating Person with a Mental Illness

Police officer Joseph Rios, who was caught on surveillance tape beating a disabled man, has been indicted on misconduct and assault charges. Rios stopped Ronnie Holloway in front of Lawrence's Grill and Bar in Passaic, NJ on June 6th. After demanding the 49-year-old [man with] schizophrenia remove his sweatshirt, Rios can be seen slamming him into the hood of his car and hitting him with his nightstick. Read more at and see the video.

4) Announcements and Additional Resources

Deadline to Apply for AAPD Paul Hearne Award is October 1, 2009

The American Association of People with Disabilities is seeking applicants for The Paul G. Hearne Award, presented annually by AAPD as an initiative to recognize and honor emerging leaders within the national cross-disability civil rights movement. The award is named in honor of Mr. Paul G. Hearne, a pioneer, advocate, activist, and national leader for people with disabilities.

Each year, AAPD selects up to two individuals whose work, life and passion mirror the life and legacy of Mr. Hearne. Award recipients will each receive $10,000 to help them continue their progress as leaders. They will also have an opportunity to meet and network with national disability leaders at the AAPD Leadership Gala in Washington, DC each March. U.S. residents with any type of disability are eligible to apply.

For more information or to apply, go to: http://www.aapd.com/DMD/PaulHearneAward.html

Contact the Editor: Eleanor@ncil.org

To advertise in the Weekly Advocacy Monitor, contact the Editor.

SEANLKELLY

NCIL WEEKLY ADVOCACY MONITOR (WhAM) 10-05-09

#65

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Posts: 215

10/07/09 00:38:30

National Council on Independent Living

Weekly Advocacy Monitor

Volume 7, Issue 30 October 5, 2009

1) What's Happening in the Nation's Capital?

Community Now! Day of Advocacy

Healthcare Reform Update

2) National News

President Obama Announces New Initiatives During National Disability Employment Awareness Month

NCIL Joins Campaign to End Support for Autism Speaks and So Can You

Sears, Roebuck to Pay Largest ADA Settlement Ever for Employment Discrimination

3) State News

Michigan Conference to Focus on Issues Facing Veterans with Disabilities

TRCIL and Activist Madonna Long Produce Fashion Show to Empower Women with Disabilities

Virginia Gubernatorial Candidate Mocked by Prominent Supporter of Opposition Candidate

4) Announcements and Additional Resources

NCIL Presents at Department of Labor Listening Session

Breaking Barriers to Equality Town Forum This Saturday

Swine Flu Vaccine Available This Week for People with Disabilities, Seniors

1) What's Happening in the Nation's Capital?

Community Now! Day of Advocacy

On Wednesday, September 30th, the aging and disability communities joined forces to promote the "Community Now! Day of Advocacy". This day of advocacy was planned quickly due to breaking news from Capitol Hill that the two Senate Committees with jurisdiction were going to begin merging their versions of healthcare reform legislation by week's end. Advocates gathered in Washington to announce that now is the time to ensure that two key priorities for people with disabilities are part of the final Senate legislation.

In July, the Senate Health, Education, Labor, and Pensions (HELP) Committee passed its version of the legislation, which included the CLASS Act. The CLASS Act is one of NCIL's two biggest priorities for reform. Then, the week before last, the Senate Finance Committee Chairman, Max Baucus (D-MT), introduced a bill for debate that included another big priority for NCIL, the Community First Choice Option, language created as a compromise on the Community Choice Act, which NCIL continues to support.

As the two Committees merge their bills, sections will be removed and new ones added. NCIL knows that despite strong support for the Community First Choice Option and the CLASS Act, if people from across country don't let their Senators know why they need to stay, it will be much easier for Senators to remove them.

The Day of Advocacy was a two-part effort, which included a briefing on Capitol Hill and visits to Senate offices, as well as a national call-in effort. NCIL Policy Analyst Jason Beloungy attended the events on Capitol Hill. In the Dirksen Senate Office Building, over 50 advocates from the aging and disability communities gathered to hear details about the Community First Choice Option and the CLASS Act. Mike Oxford of Topeka Independent Living Resource Center and Lee Perselay, from Senator Harkin's office, spoke about the details and the importance of the CFC Option. Connie Garner, former staff to Senator Ted Kennedy and current staff to Senator Tom Harkin, and a representative from the American Association of Homes and Services for the Aging (AAHSA) both spoke about the CLASS Act.

After the presentation and a question and answer period, advocates broke into groups to visit all 100 Senate offices. Jason Beloungy, joined by two staff from the Endependence Center of Northern Virginia and a staff member from the ARC/UCP visited 17 Senate offices to drop off materials about the CFC Option and the CLASS Act.

The national call-in effort was another integral part of the Day of Advocacy. NCIL sent out information about the call-in to members last week, and continues to urge NCIL members to call both of their US Senators. The toll-free number to the Capitol Switchboard is: 1-800-828-0498. When that line expires, you can reach your senators at: (202) 224-3121.

Healthcare Reform Update

At 2:00 a.m. Friday morning the Senate Finance Committee completed mark-up of their version of healthcare reform legislation. This was an historical moment at which the healthcare reform process moved further than it has since Harry Truman was President. The Committee did not take a final vote to pass the legislation, opting to wait until (likely) this week. The Chairman of the Senate Finance Committee, Max Baucus (D-MT), indicated that he wanted to wait for the final cost estimate from the Congressional Budget Office (CBO), which is expected to have an estimate this week. If the Committee approves the legislation, all Congressional Committees with jurisdiction will have passed versions out of Committee.

There are currently three versions in the House of Representatives and two versions in the Senate. The House has been working behind closed doors to create one version to vote on in the full chamber. The Progressive Caucus, a group of more liberal House Democrats, has been adamant that they will only support reform if it includes a new public healthcare insurance program, known as the "Public Option". However, the "Blue Dog" Caucus, a group of more conservative Democrats has been raising concerns about cost and insisting on changes to Medicare reimbursements to improve access to services in rural areas. Both of these Caucuses have significant clout over what ends up in the bill, so the House leadership will need to find compromises that most Democrats can support. There has been little or no Republican support for the legislation.

In the Senate, inter-party conflicts have led many to believe that the bill that passes the Senate will cost less than the House version and have no "Public Option". There are 58 Democrats and 2 Independents who tend to vote with and support the Democrats. All 60 votes would be needed if Republican Senators decide to filibuster the legislation on the floor of the Senate. The Senators merging the two bills will need to account for all 60 Senator's concerns in order to avoid a filibuster.

The Speaker of the House and the House Majority Leader feel confident that they will have a bill on the floor and voted on by the end of this month. The Senate leadership is expecting to start debating the bill in the full Senate in 2-3 weeks, and hopes to have a bill passed in the Senate 2 weeks later. After the House and Senate pass separate bills, they will need to be merged in order for a final bill to be voted on by both chambers.

What this means for NCIL priorities: There are still opportunities for concerns to be addressed, and an effort will be needed to maintain what we've been able to include so far. NCIL will continue to let members know when their efforts are needed to keep what we support in the bill, change provisions that are bad, and demand additions to the legislation that are sorely needed.

For additional information about NCIL's priorities, or the healthcare reform process, contact NCIL Policy Analyst, Jason Beloungy, at 202-207-0334 (toll-free: 1-877-525-0341), ext. 1008.

2) National News

President Obama Announces New Initiatives During National Disability Employment Awareness Month

Source: The White House

President Obama [yesterday] announced that his Administration is taking several steps to ensure that there is fair and equal access to employment for all Americans, particularly the 54 million people in this country living with disabilities. The announcement comes during National Disability Employment Awareness Month.

"My Administration is committed to ensuring that all Americans have the chance to fulfill their potential and contribute to our nation," said President Obama. "Across this country, millions of people with disabilities are working or want to work, and they should have access to the support and services they need to succeed. As the nation's largest employer, the Federal Government and its contractors can lead the way by implementing effective employment policies and practices that increase opportunities and help workers achieve their full potential. We must also rededicate ourselves to fostering an inclusive work culture that welcomes the skills and talents of all qualified employees. That's why I've asked the responsible agencies to develop new plans and policies to help increase employment across America for people with disabilities." Read The Action Steps.

NCIL Joins Campaign to End Support for Autism Speaks and So Can You

NCIL has joined a multitude of organizations calling on Autism Speaks to end its use of fear, stigma, misinformation and prejudice against people with disabilities as a fundraising tool. Your organization can sign on to the following letter as well, but the deadline is today, so you must act quickly if you wish to join the campaign.

To sign on (organizations only at this time): e-mail info@autisticadvocacy.org before Close of Business Tuesday, October 6th, 2009.
To join ASAN's upcoming protests of Autism Speaks in Ohio, New England, New York City and elsewhere across the country e-mail info@autisticadvocacy.org.

To the Sponsors, Donors and Supporters of Autism Speaks:

We, the undersigned organizations representing self advocates, parents, professionals and allies in the Autism, Autistic and Disability Communities, are writing to you to express our concern about the recent actions of Autism Speaks. Our work is about helping empower and support people with disabilities of all kinds, including adults and youth on the autism spectrum, and we recognize that there are a wide variety of means towards accomplishing this goal. Yet, Autism Speaks' recent choice to use fear, stigma, misinformation and prejudice against Autistic people as a fundraising tool does real damage to people with disabilities everywhere. The most recent example of this lack of ethics can be found in Autism Speaks' new "I am Autism" campaign which states, "I am autism...I know where you live...I work faster than pediatric AIDS, cancer and diabetes combined. And if you're happily married, I will make sure that your marriage fails. Your money will fall into my hands and I will bankrupt you for my own self-gain...I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain...I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness."

Not only does this campaign rely on offensive stereotypes and inaccurate information (research indicates that parents of Autistic children are not more likely to divorce than parents of non-Autistic children), but it also does real damage to the cause of disability rights. By choosing to portray Autistic people as husks of real people, stolen out of our own bodies, Autism Speaks reinforces stereotypes and prejudice against people with disabilities that have existed for centuries and have been the source of pain, segregation and violence.

We are calling on you to end your support for Autism Speaks and to find new ways to show your support for Autistic people and others with disabilities. As the result of a pattern of unethical behavior and irresponsible governance, outlined below, we believe that Autism Speaks as an organization no longer deserves your time, energy, money and support. Read the entire letter.

Sears, Roebuck to Pay Largest ADA Settlement Ever for Employment Discrimination

Source: Occupational Health and Safety

The Equal Employment Opportunity Commission (EEOC) recently announced the entry of a record-setting consent decree resolving a class lawsuit against Sears, Roebuck, and Co. (Sears) under the Americans with Disabilities Act (ADA) for $6.2 million and significant remedial relief.

The consent decree, approved on Sept. 29 by Federal District Judge Wayne Andersen, represents the largest ADA settlement in a single lawsuit in EEOC history. EEOC's suit alleged that Sears maintained an inflexible workers' compensation leave exhaustion policy and terminated employees instead of providing them with reasonable accommodations for their disabilities, in violation of the ADA.

"The facts of this case showed that, nearly twenty years after the enactment of the ADA, the rights of individuals with disabilities are still in jeopardy," said Stuart J. Ishimaru, EEOC acting chairman. "At the same time, this record settlement sends the strongest possible message that the EEOC will use its enforcement authority boldly to protect those rights and advance equal employment opportunities for individuals with disabilities."

EEOC Chicago District Director John Rowe, who supervised the agency's administrative investigation preceding the lawsuit, said that the case arose from a charge of discrimination filed with the EEOC by a former Sears service technician, John Bava. According to Rowe, Bava was injured on the job, took workers' compensation leave, and, although remaining disabled by the injuries, repeatedly attempted to return to work. Sears, Rowe said, "Could never see its way clear to provide Bava with a reasonable accommodation which would have put him back to work and, instead, fired him when his leave expired." Read More.

3) State News

Michigan Conference to Focus on Issues Facing Veterans with Disabilities

Source: The Grand Rapids Press

A conference in Grand Rapids, MI October 15, 2009 will cover "Opportunities for Inclusion." Housing, accessibility, transportation and challenges facing veterans disabled in combat will be the focus of the event, sponsored by Disability Advocates.

The conference is 9 a.m. to 4 p.m. at Calvin College's Prince Conference Center, 1800 E. Beltline Ave. SE. Cost: $10 for veterans, $15 for others. Sessions include community organizing and universal design, with keynote speech by retired Marines Lt. Col. Tim Maxwell, president of SemperMax. Visit www.dakc.us to register.

TRCIL and Activist Madonna Long Produce Fashion Show to Empower Women with Disabilities

Source: ThePittsburghChannel.com

Pittsburgh, PA - Models with disabilities took the stage September 30 during a fashion show aimed at empowering people. The Dare to Change the World show was designed to make the models feel as good as they looked.

The show was created by disabled rights activist Madonna Long. The Ebensburg, Indiana County, native also publishes a magazine aimed at empowering disabled women. "It's also about hoping to help them to understand to advocate for themselves, and not just understand that it's 'Madonna on Capitol Hill,' it can be me up on Capitol Hill," Long said.

The fashion show was part of the Disability Pride dinner hosted by the Three Rivers Center for Independent Living.

Virginia Gubernatorial Candidate Mocked by Prominent Supporter of Opposition Candidate

Source: Huffington Post

The Virginia gubernatorial race took an ugly turn this past weekend when a prominent endorser for Republican Bob McDonnell mocked the slight stutter of Democrat candidate Creigh Deeds.
At a rally for McDonnell's campaign, Sheila Johnson was taped discussing the importance of communication skills in the state's next governor.

"We need someone who can really communicate," she said. "And Bob McDonnell can communicate. The other people that I talk to, especially his o-o-o-o-o-o-o-o-o-o-opponent... could not articulate what needed to be done."

Deeds' spokesperson Mike Gehrke offers the following response to Johnson's comment: "This is a cheap shot and a new low for this race. Virginians deserve better than personal attacks like this. Creigh Deeds isn't the smoothest speaker in the race, but when he speaks he is authentic and means what he says." Read more and watch the video.

4) Announcements and Additional Resources

NCIL Presents at Department of Labor Listening Session

On Thursday, October 1st, NCIL Policy Analyst Jason Beloungy was one of 21 invited speakers to publically comment on the reauthorization of the Workforce Investment Act (WIA) of 1998 before Assistant Secretary of the Employment and Training Administration (ETA), Jane Oates; and Assistant Secretary of the Office of Disability Employment Policy (ODEP), Kathy Martinez.

The purpose of the listening session was to gather input for the Department of Labor about what has been working with WIA, what has not been working, and new opportunities for innovation and change. The 21 presenters were broken up into four groups: Workforce Investment System experts; Disability Program Navigators; National Experts on WIA; and National Disability Organizations.

Jason was joined on the panel of national disability organizations by Charles Harles, Co-Chair of the Consortium of Citizen's with Disabilities' (CCD) Employment and Training Taskforce; David Hoff, Board Member of APSE, the network on employment, and Chair of their Public Policy Committee; and Serena Lowe, Co-Founder of the Collaboration to Promote Self-Determination.

NCIL's presentation focused primarily on the concerns with WIA and suggestions for innovation and changes, and our written testimony will be released shortly. The entire three-and-one-half-hour listening session can be listened to online by going to: www.workforce3one.org

Breaking Barriers to Equality Town Forum This Saturday

Saturday October 10th, 2009; 1:00 PM - 2:30 PM
Location: Sheraton Four Points Hotel
1201 K Street NW
Washington, DC 20005

Hosted by ReachOut USA: www.reachoutusa.org

1 in 5 people in the LGBT Community have a disability or chronic disease. This town forum hall will bring together leading members of the Disability and LGBT Communities to discuss common issues to unite us in a stronger effort towards equality for all people.

Some topics to be discussed:

Employment: Safe workplaces, equal opportunities, fair hiring practices, non-discrimination policies.
Accessibility: (how both communities can work together to make themselves fully accessible to each other, which also includes outreach)
Healthcare Reform Issues: Community First Choice would allow that services must be provided in a home or community setting based on a written plan, instead of being forced into a nursing home because of a disability or chronic illness.
Violence/Hate Crimes: Issues that affect both communities.
Equality: Equal protection in all matters governed by civil law in all 50 states.

Please join us for an informal mixer Saturday night from 7:00 PM to 9:00 PM in the Postscript Room at the Madison Hotel, 1177 15th Street NW.

Swine Flu Vaccine Available This Week for People with Disabilities, Seniors

The federal government is launching the most ambitious vaccination campaign in the U.S. history, geared toward preventing the spread of the highly contagious H1N1 (Swine Flu) virus. H1N1 is similar to the seasonal flu but with more severe symptoms and marks the first influenza pandemic in over 41 years. One of the goals in the campaign by the federal government is to aid communities that may be more at higher risk, including some people with disabilities. The government states the vaccine itself will be free but there might be costs associated from the provider of the vaccine.

Over the last few months, the government has spent $2 billion to purchase about 250 million doses of H1N1 vaccine and has pledged to buy enough to immunize every American. The vaccination will come in two forms: a shot and FluMist, a nasal spray. The doses are being divided among the states, distributed according to population, and further dispersed by state health departments. Vaccination sites include doctors' offices, hospitals, drugstores, and public clinics.

For more information, please visit the Center for Disease Control and Prevention's website: http://www.cdc.gov/h1n1flu/general_info.htm.

Contact the Editor: Eleanor@ncil.org

To advertise in the Weekly Advocacy Monitor, contact the Editor.

SEANLKELLY

NCIL WEEKLY ADVOCACY MONITOR (WhAM) 10-19-09

#66

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Posts: 215

10/20/09 12:58:17

National Council on Independent Living

Weekly Advocacy Monitor

Volume 7, Issue 31 October 19, 2009

1) What's Happening in the Nation's Capital?

Healthcare Reform Update: One Step Closer

2) National News

House Adds Hate Crimes Protections for People with Disabilities

Recession Prevents Automatic COLA Increases in Social Security Benefits; Obama Calls on Congress to Extend Economic Recovery Payment for 2010

NCIL Presents Concerns and Recommendations on Reauthorization of WIA to the Department of Labor

3) State News

ADAPT Storms Atlanta

CA Advocates Protest Cutbacks to Community-Based Services; File Injunction to Stop the Cuts

4) Announcements and Additional Resources

NCIL Launches Women's Caucus: Join Today!

President Obama Announces Intent to Nominate Lynnae Ruttledge as RSA Commissioner

Pro-Privatization Bush Aide Nominated to Social Security Board

1) What's Happening in the Nation's Capital?

Healthcare Reform Update: One Step Closer

On October 13th, the Senate Finance Committee advanced the opportunity for healthcare reform when it became the fifth and final Congressional Committee to pass a bill out of committee. After all of the Senators on the Committee had a chance to give a statement, they voted on the bill, known as the "America's Healthy Future Act" by a margin of 14-9. All 13 Democrats voted for the bill, as well as Senator Olympia Snowe (R-ME). While this was a major victory for reform, it is no guarantee that a final bill will pass with bi-partisan support, or at all. Even some of the Democrats on the Committee voted for the bill with the expectation that changes would be made during the process of merging it with that of the Health, Education, Labor and Pension (HELP) Committee. Others talked about their plan to offer amendments when the bill goes to the floor of the Senate for debate. An outline of the major components of the Senate Finance Bill that have an impact on people with disabilities will be distributed to the membership later this week.

What Happens Next: Staff to the Senate Majority Leader, Harry Reid (D-NV) predict that the merger process may only take a few days. The merged legislation will then be discussed with all Senate Democrats and analyzed by the Congressional Budget Office (CBO), which would push debate of the final Senate bill to the week of October 26th.

The House of Representatives continues work to merge their three versions of HR 3200. Some Representatives have been closely watching the Senate Finance Committee, hoping they could use its bill as a model that would appease conservative members in both chambers. House leadership has been pressing for completion of a merge that includes the public option, which would give people without insurance an option for affordable and comprehensive coverage. The House plans to have their version scored by the Congressional Budget Office this week, and hopes to be debating a final bill in late October.

After the House and Senate pass their respective bills, a final bill must be forged and pushed through both chambers again.

2) National News

House Adds Hate Crimes Protections for People with Disabilities

Source: Disability Scoop, by Michelle Diament

Violent crimes committed based on a person's disability would become federal hate crimes offenses under legislation approved by the House of Representatives Thursday. The measure builds upon the 1968 hate crimes act by adding disability, gender, sexual orientation and gender identity to the list of protected statuses. Current law includes protections for crimes committed based on a person's race, color, religion or national origin.

The move comes on the heels of a Justice Department study released earlier this month indicating that people with disabilities are 50 percent more likely to experience nonfatal violent crime as compared to their peers. Of crime victims with disabilities, the study indicated that about one in five said they thought their disability was the reason they were targeted.

"No American should ever have to suffer persecution or violence because of who they are, how they look or what they believe," House Speaker Nancy Pelosi (D-CA) said of the hate crimes bill, which passed as part of a larger defense spending bill. "This legislation also gives state and local law enforcement the tools they need to prevent and prosecute hate crimes nationwide, helping protect Americans against bias-motivated violence and securing our fundamental right to feel safe in our communities."

Many Republicans, however, voted against the defense spending bill because the hate crimes provision - which they called "thought crimes legislation" - was included.

The legislation must still be approved by the Senate and by President Barack Obama, both of which are likely.

Recession Prevents Automatic COLA Increases in Social Security Benefits; Obama Calls on Congress to Extend Economic Recovery Payment for 2010

Source: The Boston Globe, by Andrew Chan (excerpted)

As expected for some time now, the Social Security Administration (SSA) recently confirmed on their web site that there will not be an automatic cost-of-living-adjustment (COLA) for those who receive monthly Social Security and Supplemental Security Income benefits in 2010.

Under current social security laws, Social Security and Supplemental Security Income benefits increase automatically each year based on the inflation measure known as the Consumer Price Index for Urban Wage Earners and Clerical Workers (CPI-W). Since there was no increase in the CPI-W for [the relevant period last year], there would be no COLA increase for 2010. Read more about what this means from the Boston Globe.

From the White House: President Obama announced his support for an additional $250 Economic Recovery Payment to the seniors, veterans and people with disabilities who are struggling to make ends meet with retirement savings that have not fully recovered from their losses over the first year of the recession. In addition to this legislative proposal, the Internal Revenue Service and the Department of Treasury will take steps this week to prevent reductions in the amounts that workers can contribute to IRAs, 401(k)s, and other aspects of tax-favored retirement systems in 2010 that some feared could result from negative inflation over the past twelve months.
Read the President's remarks.

The President's proposal would provide an additional year of the $250 "Economic Recovery Payments" initially enacted under the American Reinvestment & Recovery Act (ARRA). Under this proposal:

57 million people would benefit. These include 49 million Social Security beneficiaries, 5 million Supplemental Security Income beneficiaries, 2 million veterans benefit recipients, 0.5 million railroad retirement and disability beneficiaries, and also about 1 million public-employee retirees not entitled to any of the previous benefits.
The benefit would be $250 - or equivalent to a 2 percent increase in benefits for the average Social Security retiree beneficiary. Under the rules no person could "double dip" and receive a $250 Economic Recovery Payment through more than one program. Nor could they receive both an Economic Recovery Payment and the Making Work Pay tax credit.
The total cost of the proposal would be $13 billion - and would not hurt the solvency of Social Security. The President is committed to ensuring that the $13 billion cost of the proposal does not reduce the solvency of Social Security or other social insurance programs.
Would extend an effective relief program. To date Economic Recovery Payments have been made to 55 million people including seniors, veterans and people with disabilities and totaled $13.7 billion. Most of the checks were mailed out in May 2009.

NCIL Presents Concerns and Recommendations on Reauthorization of WIA to the Department of Labor

On October 1, 2009 NCIL staff Jason Beloungy presented recommendations on reauthorization of the Workforce Investment Act (WIA) at a listening session held by the Department of Labor. The testimony focused on what is and is not working in WIA's current form, as well as opportunities for innovation and change.

Here is a brief summary of NCIL's position. You can get all the details in the official testimony.

NCIL has been working on reauthorization for over a decade while people with disabilities fall through the cracks and face a level of unemployment unparalleled to any other demographic in the nation.

NCIL supports the reauthorization of WIA, with strongly recommended improvements. NCIL believes that in order to Reauthorize the Workforce Investment Act, there needs to be changes to improve employment services for underserved populations that further embrace consumer control over one's life and one's programs and services. Many of the problems with WIA could be addressed with simple changes - attitudinally, physically and programmatically.

NCIL believes that it is the obligation of the federal government to tear down the barriers to job-seekers that exist, which in some cases are exacerbated by WIA in its current form. With an economic crisis and a shrinking workforce already making the task of finding meaningful competitive employment difficult, there is an opportunity to make sure that all of the rungs are in place for people with disabilities to climb the ladder to success, independence and happiness.

3) State News

ADAPT Storms Atlanta

Source: Worker's World, by Dianne Mathiowetz

Downtown Atlanta was the backdrop to a demonstration of hundreds of disabled people demanding equality and the freedom to choose to live in their communities instead of nursing homes. Rallying on Oct. 11 at the Dr. Martin Luther King Jr. Historic Site, through music, banner slogans, chants and speeches, the activist members of ADAPT, a national grassroots disability rights organization, asserted their determination to win full civil and human rights.

ADAPT is holding its national convention in Atlanta with a packed three-day schedule of workshops, strategy sessions and direct actions geared to challenge and change stereotyping and patronizing policies that rob [people with disabilities] of self-determination.

Of special focus is mobilizing for congressional passage of the Community Choice Act, which would redirect Medicaid funds from forced institutional care to community-based housing and home care services. Ken Collins, who [experienced] brain damage in a snow mobile accident more than three decades ago and works at the San Juan Center for Independence in Gallup, N.M., explained that the benefits of community-based housing extend beyond the improvement in the quality of life for [individuals with disabilities]. The benefits would include helping the individuals' families, provide more jobs for an expanded home care workforce and lead to a more open society. Read More.

CA Advocates Protest Cutbacks to Community-Based Services; File Injunction to Stop the Cuts

Source: KGO Radio Bay Area News

Senior citizens, people with disabilities, and caregivers will be rallying outside the federal building in Oakland on Monday morning in support of a lawsuit that would stop cuts to in-home supportive services. A federal judge has issued an emergency restraining order to stop the California Department of Social Services from mailing more than 130,000 notices informing seniors and people with disabilities statewide that services will be cut or eliminated, according to rally organizers.

After the rally, attorneys from a consortium of in-house service consumers and providers will argue for the issuance of a preliminary injunction to block the implementation of the cuts while the case is considered.

The cuts are scheduled to take effect on Nov. 1 and would result in 40,000 people losing in-house supportive services and 90,000 having their services reduced, according to rally organizers. The services include meal preparation, food shopping, cleaning and assistance with medical appointments.

The rally was scheduled to begin at 9:15 a.m. this morning outside the building located at 1301 Clay St.

4) Announcements and Additional Resources

NCIL Launches Women's Caucus: Join Today!

NCIL has a new opportunity for the voice of women with disabilities to be heard, and independence needs to be addressed fully. At the NCIL Annual Conference, a few women gathered to discuss the issues that are affecting them as women in the disability community and opportunities for leadership within NCIL. As a result, NCIL has approved a Women's Caucus as part of the Diversity Committee. Mary Margaret Moore and Sarah Launderville have come forward to co-lead a NCIL Women's Caucus. Mary Margaret Moore is the Executive Director of Independent Living Center of the North Shore and Cape Ann, Inc. and Region I Representative to the NCIL Board. Sarah Launderville is Executive Director of the Vermont Center for Independent Living.

The first caucus meeting is scheduled for Friday, November 6, 2009, at 3:00 PM EST. The caucus is open to all NCIL members who self identify as women seeking support to erase the barriers to independent living in our lives and our sisters' lives. If you would like to participate, send an email to mmmoore@ilcnsca.org and slaunderville@vcil.org with "Sign me up for Women's Caucus" in the subject line, and you will receive the agenda and teleconference call in number for our meetings.

At the first caucus meeting, members will create a vision statement and plan for the group. Hope you will join us!

President Obama Announces Intent to Nominate Lynnae Ruttledge as RSA Commissioner

Source: The White House, Office of the Press Secretary

On October 15, President Barack Obama announced his intent to nominate Lynnae M. Ruttledge to the post of Commissioner of the Rehabilitation Services Administration, Department of Education. The following is a biography provided by the White House.

Lynnae M. Ruttledge has served as the Director of the Washington Department of Social and Health Service, Division of Vocational Rehabilitation since 2005. She is responsible for leading Washington's vocational rehabilitation program, working annually with more than 23,000 individuals with significant disabilities to achieve their vocational goals. Previously, Ruttledge served in leadership positions at the Oregon Department of Human Services, Office of Vocational Rehabilitation Services for more than 25 years. Ruttledge began her public service career in Michigan as a classroom teacher in the public school system. She has received numerous recognitions and awards for her service including the Washington Governor's Award for Leadership in Management in 2007. As a person born with a disability, Ruttledge received assistance from the vocational rehabilitation program and graduated from the Northern Michigan University with a B.A. in Education.

Pro-Privatization Bush Aide Nominated to Social Security Board

Source: Wall Street Journal, by Jonathan Weisman

For much of 2005, a battered Democratic Party sought to regain its footing by doing battle with President George W. Bush over his attempt to carve private investment accounts out of Social Security. The effort was widely viewed as a rousing success, stopping the initiative in its tracks and weakening a newly re-elected president, but the brains behind the Bush Social Security plan have not been vanquished.

Far from it: Chuck Blahous was nominated to the Social Security Board of Trustees last week - by Barack Obama. White House aides say Blahous's nomination comes courtesy of the Senate Minority Leader Mitch McConnell, who gets to recommend an appointee to one of two public trustee slots on the Social Security Board. But it was Obama who sent his name up to the Senate, with nary a mention of his work championing what Democrats derisively called Social Security privatization.

The nomination identifies Blahous as a former deputy director of the Bush National Economic Council and as the executive director of the bipartisan President's Commission to Strengthen Social Security. That commission was tasked to draft the policy recommendations for maintaining Social Security solvency, in part through partial privatization.

Editor's Note: In an interesting confluence of recent events, Mr. Blahous published a Washington Post Op-Ed this August enteating the Obama Administration not to respond to the lack of COLA increase, and to shift new burdens onto Social Security recipients themselves.

Contact the Editor: Eleanor@ncil.org

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SEANLKELLY

NCIL WEEKLY ADVOCACY MONITOR (WhAM) 10-26-09

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Posts: 215

10/26/09 23:12:15

National Council on Independent Living

Weekly Advocacy Monitor

Volume 7, Issue 32 October 26, 2009

1) What's Happening in the Nation's Capital?

Act Now: Help Save the CLASS Act from Corporate Lobbyists!

2) National News

National Housing Trust Fund Update: Funding Mechanisms Introduced

The Public Option: What it Is!

Sidewalk Accessibility Becomes Major Issue as Recession Drags On

3) State News

DOJ Intends to Intervene in Precedent-Setting New York Case

4) Announcements and Additional Resources

Spread the Word: United We Ride National Dialogue

Kelly Buckland to Appear on Disability Matters this Tuesday: Tune In!

Notice on Competitive Bidding from CMS

SSA Webinar on Benefits for "Wounded Warriors"

1) What's Happening in the Nation's Capital?

Act Now: Help Save the CLASS Act from Corporate Lobbyists!

The Senate continues to merge the Health Education Labor and Pensions (HELP) and Finance Committee bills in to one, in the hopes that it will next go to the Senate Floor for debate, amendments, and a vote. The participants in that process are Senate Majority Leader Harry Reid, Senate Finance Committee Chair Max Baucus, and Senator Chris Dodd, Acting Chair when the bill was introduced to the HELP Committee.

Over the course of the last week, the insurance industry and some high ranking Senators have been actively working against the CLASS Act. They have spread misleading information about it in an attempt to get it stripped from the final bill. We must reach out to our Senators now to build solid support and put those who oppose the CLASS Act in their place: working for the American people. The CFC Option has not yet faced the same opposition, but if we lose the CLASS Act in the Senate, the CFC will become the next target.

Act Now: Call your U.S. Senators and tell them to support the Community First Choice Option and CLASS Act as part of the final Senate Healthcare Reform Bill! It is extremely important that both of these reforms make it into the final legislation.

In the House of Representatives, the merge process is near completion. It is expected that the House will soon release more information, including the status of the CLASS Act and the Community First Choice Option. The Energy and Commerce Committee included a "shell" of the CLASS Act in their version of the legislation and we are currently waiting to see whether the work of our members successfully achieved inclusion of the CFC Option in the final House bill. Since the Senate has maintained the provision, the House may follow suit.

2) National News

National Housing Trust Fund Update: Funding Mechanisms Introduced

Congress created the National Housing Trust Fund In 2008 with the intention of funding it through Fannie Mae and Freddie Mac. With the economic downturn, the implosion of the housing market, and government intervention in Fannie Mae & Freddie Mac, the funding never materialized.

Two bills in the House (H.R. 3766) and the Senate (S. 1731) would set aside $1 billion for the Trust Fund as "start-up money." Both rely on funding from the Troubled Asset Relief Program (TARP), the "bank bailout" money being repaid. H.R. 3766, The Main Street TARP Act of 2009, introduced by Rep. Barney Frank (D-MA), would use unspent TARP funding. S. 1731, The Preserving Homes and Communities Act, sponsored by Senator Jack Reed (D-RI), would use the sale of warrants that the Treasury Department is holding.

The Trust Fund would provide subsidies to developers who preserve, rehabilitate and construct housing primarily for extremely low-income families. The passage of those bills would provide badly needed housing and stimulate the construction of multi-family buildings at a time when funding for these projects is difficult to obtain.

NCIL urges members to contact their Representatives and Senators in support of H.R. 3766 and S. 1731.

The Public Option: What it Is!

There has been a lot of discussion about the "Public Option", so we'd like to take this opportunity to discuss what it means. The Public Option is a proposal for the government to create a health insurance program that would compete with private insurance companies. People who are eligible would be able to access it, as well as other private insurance options, in a health insurance exchange. In the same way that Medicare and Medicaid are government health insurance programs, this new proposal would not look much different, depending on what Congress ultimately decides to make the program look like.

The Public Option would only be available to a small portion of the American public. The idea to limit access to the Public Option came from Congress' intent to protect the for-profit health insurance industry. Congress has different ideas on who should be able to choose this option, but if it were to be approved, the only people initially able to use it would be people who:

Do not have insurance through an employer;
Do not have insurance through the government already, such as Medicare or Medicaid.

There are varying ideas on allowing others in the two groups listed above to join. For example, some Congresspersons feel that individuals and employers should be able to have a choice after the Option has been established for a few years.

The question of how the Public Option would reimburse doctors and providers has become the most difficult to answer. If reimbursement rates were based merely on cost to the government or fairness to providers, the answer would be easy. However, the interests compete, so there are a few options being considered:

Create a program that is much like Medicare and would reimburse doctors and providers at the current Medicare reimbursement rates. This is the cheapest option, but doctors and providers dislike the reimbursement rate.
The second option is like the first, but the reimbursement rate would be Medicare, plus 5%.
The third option is to create a plan like Medicare, but the rates would be negotiated between the Department of Health and Human Services and providers. Democrats from rural areas like this option, but it is more expensive than the others.
Another option being considered is allowing states who do not want a Public Option to opt-out of the plan.
Some moderate Democrats, and Senator Olympia Snowe (R-ME), have proposed a public plan that would only go into effect several years from now, if the private insurance industry could not demonstrate competition and lower health care costs.

These are just a few of the big questions surrounding the Public Option. There will likely be some form of a Public Option in the House reform bill. In the Senate, the latest indication is that the Senate Majority Leader will offer a bill with a Public Option that includes the opt-out clause.

If you have questions about the healthcare reform process or the NCIL priorities in reform, please contact NCIL Policy Analyst, Jason Beloungy, at 1-202-207-0334 (toll-free: 1-877-525-3400), ext. 1008. Jason can also be reached by e-mail at: jason@ncil.org.

Sidewalk Accessibility Becomes Major Issue as Recession Drags On

Source: USA Ttoday, by Chris Joyner

The nation's crumbling sidewalks have disabled residents taking their wheelchairs to the streets, a potentially dangerous practice that has cash-strapped cities and disability-rights advocates at odds over how to fix the problem. Cities across the nation are dealing with eroding sidewalks that do not meet standards set by the Americans with Disabilities Act. Under the ADA, state and local governments cannot discriminate against the disabled in providing "services, programs or activities," including access to sidewalks.

Although there are no specific statistics on the number of accidents involving wheelchairs in streets, according to the U.S. Department of Transportation's Fatality Analysis Reporting System, disability was a factor in 617 pedestrian traffic fatalities last year.

Disabled residents here [in Jackson, MS] take their lives in their hands getting from point A to point B, says Scott Crawford, a disability-rights advocate. In March, James Smith, 68, was killed when an SUV, struck by another vehicle, plowed into his motorized wheelchair on Medgar Evers Boulevard, one of Jackson's main thoroughfares.

Where they exist, the sidewalks often are in such disrepair as to be impassible to people in wheelchairs, says Crawford, leaving the roadway as the only other option. "I've been beeped at and honked at and cussed at," by motorists, he says.

Lois Thibault, coordinator of research for the U.S. Access Board, a federal agency that provides guidance to local governments on ADA issues, said Jackson is in the same boat with a lot of cities that for years stalled spending federal dollars on sidewalks to spend money on roads. "It's deferred maintenance," she said. "We've been so focused on new construction that we've let the maintenance go."

Crawford is a plaintiff in a federal lawsuit aimed at getting the city to comply with ADA standards by making sidewalks, bus stops and other public areas accessible to the disabled. The Justice Department has joined in the lawsuit. Read More.

3) State News

DOJ Intends to Intervene in Precedent-Setting New York Case

Source: Politics on the Hudson

[New York] state has received a two-week extension to file a U.S. District Court-ordered remedial plan on how to place residents of adult homes in New York City in settings that are more integrated into the community. Instead of this Friday, state officials have until Nov. 6.

Besides needing more time to develop the plan, state officials recently learned the U.S. Department of Justice intends to intervene in the lawsuit and they haven't yet been able to review all the paperwork, according to Assistant Attorney General Barbara Hathaway, who sent a letter requesting an extension to the judge.

Last month, U.S. District Court Judge Nicholas Garaufis ruled that about 4,300 mentally ill people living in New York City adult homes were not receiving adequate care, a violation of the Americans with Disabilities Act and the Rehabilitation Act, which require they live in the least restrictive setting possible.

Disability Advocates Inc. sued the state six years ago on behalf of the adult-home residents. Adult homes are for-profit entities that have been widely criticized for their care. Many former patients at psychiatric hospitals were discharged into group homes after the state began deinstitutionalization in the early 1970s. It's unclear whether the Health Department and the Office of Mental Health will propose remedies on a statewide basis. New York has 380 group homes.

But the decision is expected to have national implications on treatment for people with mental illness. The Department of Justice has requested permission to intervene in the case "in order to ensure that the broader public interest is represented in this litigation," the agency wrote in a letter to Garaufis, who is taking up the matter today.

Here is another excerpt from the letter: "The United States has primary regulatory and enforcement authority under Title II of the ADA, and therefore has a strong interest in ensuring the proper and consistent application of its ADA regulations. Moreover, the United States seeks to intervene because of the significance and scope of the proposed remedy, which will help transform the lives of individuals with mental illness whom the Court found to be living in segregated communities, a great concern for the United States."

The remedy may serve as a model for other courts in similar cases and the United States "has a substantial interest in helping to craft this remedy," the DOJ letter said.

4) Announcements and Additional Resources

Spread the Word: United We Ride National Dialogue

November 2-13, 2009

Do you know anyone who might have a suggestion or an idea about how to increase access to affordable and reliable transportation services for people with disabilities, older adults, and people with limited incomes?

Please ask them to sign up now at www.uwrdialogue.org to participate in an upcoming online National Dialogue with representatives of the federal government, as well as state and community leaders! Stakeholders can provide critical input to the Federal Interagency Coordinating Council on Access and Mobility (CCAM) and help the best ideas 'rise to the top' during the dialogue. Just click the link above to sign up to participate in this free online dialogue! It is important that this dialogue be as inclusive as possible, so please spread the word.

Kelly Buckland to Appear on Disability Matters this Tuesday: Tune In!

NCIL Executive Director Kelly Buckland will appear on the internet radio show Disability Matters with Joyce Bender tomorrow, October 27, 2009. Tune in free of charge. The event will be closed captioned.

From Joyce Bender: "Kelly Buckland is a great champion for Americans with disabilities. Hear him on October 27th on Disability Matters with Joyce Bender on Voice America. The show is on from 2:00 to 3:00 pm Eastern time."

The show will also be archived at: www.benderconsult.com.

Notice on Competitive Bidding from CMS

Source: Janet Miller, Office of External Affairs, Centers for Medicare & Medicaid Services

"If you help people with Medicare get certain medical equipment and supplies, such as oxygen or power wheelchairs, you should know about new requirements for Medicare suppliers of durable medical equipment, prosthetics, orthotics and supplies (DMEPOS) now in effect that may change the suppliers that Medicare beneficiaries will need to use.

CMS is sending notification letters to beneficiaries who may need to change suppliers in order for Medicare to pay for their equipment and supplies. The letter encourages each beneficiary to check with their supplier to make sure that the supplier meets the new requirements. The letter also provides instructions for the beneficiary to find another supplier, if necessary. A copy of the notification letter along with additional information on Medicare's new accreditation and surety bond requirements for DMEPOS suppliers may be found at http://www.cms.hhs.gov/Partnerships/03_DMEPOS_Toolkit.asp. The additional information in the toolkit includes fact sheets and frequently asked questions (FAQs) on the issue."

We are very interested in working with you, and those you represent, to resolve any concerns that may arise out of this change. Please let me know of any concerns or questions you hear about from colleagues or clients so we may address them."

SSA Webinar on Benefits for "Wounded Warriors"

Source: SSA

The Social Security Administration will host a national webinar November 4, "Social Security for Wounded Warriors." During the webinar, you can learn more about benefit programs and the expedited processing of disability claims available to our nation's Wounded Warriors. The expedited process is used for military service members who become disabled while on active military service on or after October 1, 2001, regardless of where the disability occurs.

We welcome service members, their families and friends, and those that advocate on their behalf to participate in this seminar for the web as we discuss: who is eligible, when to apply, and how to apply.

The webinar will be hosted via www.socialsecurity.gov on November 4, 2009, at 2:00 p.m. EST. To RSVP for the webinar, please visit: http://www.socialsecurity.gov/survey/woundedwarriorsrsvp.htm. You will have the option of submitting questions in advance of the webinar with your RSVP.

Contact the Editor: Eleanor@ncil.org

To advertise in the Weekly Advocacy Monitor, contact the Editor.

SEANLKELLY

NCIL WEEKLY ADVOCACY MONITOR (WhAM) 11-02-09

#68

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Posts: 215

11/03/09 16:52:08

National Council on Independent Living

Weekly Advocacy Monitor

Volume 7, Issue 33 November 2, 2009

1) What's Happening in the Nation's Capital?

Keep It Classy: The 7 Senators Trying to Kill the CLASS Act

2) National News

House of Representatives Introduces Healthcare Reform Legislation

Senate Awaits Cost Estimate

Autism Speaks' Walk on National Mall Stirs Controversy

3) State News

Important New Maryland Law Protects Parents with Disabilities

4) Announcements and Additional Resources

HHS Report Highlights How Health Insurance Reform Will Reduce Costs for Small Businesses

1) What's Happening in the Nation's Capital?

Keep It Classy: The 7 Senators Trying to Kill the CLASS Act

Creating quite a stir last week in Washington was one of NCIL's top priorities: the CLASS Act! News outlets were reporting that the CLASS Act was a sticking point for several Senators, and some felt inclined to oppose the bill because of its inclusion. Seven senators sent the Majority Leader a letter expressing their concerns for the bill. Their primary concern for the bill was that it would create deficits for the country in the "out years" (the years after the period for which the Congressional Budget Office scores the bill). Despite the fact that the CLASS Act, as amended by the HELP Committee, included language that guaranteed its solvency for 75 years (which is practically unheard of for most legislation), these seven Senators still feel there is a problem:

Senator Joe Lieberman (CT)
Senator Blanche Lincoln (AR)
Senator Evan Bayh (IN)
Senator Kent Conrad (ND)
Senator Mark Warner (VA)
Senator Mary Landrieu (LA)
Senator Ben Nelson (NE)

NCIL urges members in those states to call these Senators and tell them that the CLASS Act needs to be in healthcare reform!

2) National News

House of Representatives Introduces Healthcare Reform Legislation

Last week, the Democratic leadership in the House of Representatives released their version of reform legislation (HR 3962). The 1,990 page bill was the nearly-final product of weeks of negotiation between members of the House as they worked to blend the three versions of HR 3200 approved in committee.

The price tag of the bill falls under $900 Billion, which meets the goal set by President Obama, but has a few missing components. There are still some issues, such as healthcare for immigrants, federal funds being used for abortion services and Medicare reimbursement concerns for doctors and physicians. The House is busy working out the final details of this bill that will need to garner the 218 votes on the floor of the House. House leadership hopes to achieve that threshold this week, and then begin deliberation. It is unclear if amendments to the bill will be allowed during the floor session. The House leadership is aiming to have the bill passed out of their chamber by as early as the end of this week!

There is a lot of information in a nearly 2,000 page bill, so NCIL will distribute an alert this week to address some of the highlights and deficiencies of the bill as it currently stands.

Senate Awaits Cost Estimate

In the Senate, Majority Leader Harry Reid (D-NV) made an announcement that he had finally produced a bill. Senators Reid, Chris Dodd (D-CT), and Max Baucus (D-MT) spent the last several days working on merging the bills that had passed the two Committees. The announcement was an important one because the Majority Leader decided to include a provision creating a national government-run health insurance program (the Public Option) in his bill.

The Senate is awaiting a cost estimate from the Congressional Budget Office on the entire Senate Bill. Once that estimate is determined, the bill will be released. The Majority Leader is keeping details to himself as he awaits a cost estimate, and is having different versions scored by the CBO because he want to publicly release a final bill with a reasonable price tag that meets the expectations of the 60 Senators he needs to bring the bill to a vote.

The bill will be public for at least 72 hours before debate begins and the Leadership is planning to have the bill passed later this month. This timeframe could prove elusive if some Senators who caucus with the Democrats support a republican filibuster. This issue was raised last week when Senator Joe Lieberman (I-CT) indicated that he would support a filibuster if the bill contained the Public Option.

There are a lot of rules and procedures in the Senate that can make the most experienced Senators unsure of how these final steps will play out. Once the bill is released to the floor of the Senate, a number of amendments could be offered to change it. While it seems like there are only a few steps left, there is a long way to go and nothing is certain at this point.

For more information about the healthcare reform process in the House and Senate, contact NCIL Policy Analyst, Jason Beloungy, at 202-207-0334 (toll-free 1-877-525-3400), ext.1008. Jason can also be reached by e-mail at: jason@ncil.org.

Autism Speaks' Walk on National Mall Stirs Controversy

Source: DC's NewsChannel 8

Thousands of people converged on the National Mall Saturday [to support "fighting autism"]. Several protesters, many of whom also fall on the autism spectrum, used the annual "Walk Now for Autism" event to point out the flaws with the event sponsor.

…The annual walk sponsored by Autism Speaks drew families and supporters from all over the D.C. area. Together they raised closed to $700,000. "This money goes toward research and autism awareness," said Joe Galli, chair of the D.C. chapter of Autism Speaks. "These kids are struggling to get the treatment that they need."

On the other end of the Mall, protesters held an event of their own questioning the practices of Autism Speaks. "They use fear and stigma and pity to try and raise money off the backs of our people," said Ari Ne'eman, president of the Autistic Self Advocacy Network.

The group says the money raised Saturday and at future events won't all go to help those with the disorder. "Its funding goes overwhelmingly toward things like genetic research to create a prenatal test to end our existence," said Ne'eman.

The protesters were set up where they could be seen, right near the path of Saturday's walk. They said they did get some backlash but most people were receptive and wanted to learn more.

3) State News

Important New Maryland Law Protects Parents with Disabilities

Source: Baltimore Sun

On October 1, new laws went into effect that protect parents with disabilities in family court. General Assembly members heard from members of the National Federation of the Blind and others with disabilities that family court judges and social services workers were making assumptions that people with disabilities couldn't raise their children.

Essentially, people were being told they had to prove they could raise their children, even when there was no evidence of any problem. The new law clarifies that people with disabilities are assumed to be competent parents just like anyone else rather than allowing fishing expeditions by attorneys and social services workers based on fears of what might happen.

House Bill 689 says that there must be actual evidence on the record that a parent is having problems before disability may be a consideration in family court, including in matters of adoption, custody and visitation. It's a small change that will level the playing field for people with disabilities. We understand that some parents with disabilities have problems with their children, just like anyone else, but now the law just says there has to be evidence.

4) Announcements and Additional Resources

HHS Report Highlights How Health Insurance Reform Will Reduce Costs for Small Businesses

HHS Secretary Kathleen Sebelius today released a new report, "Lower Premiums, Stronger Businesses: How Health Insurance Reform Will Bring Down Costs for Small Businesses." The report outlines the many ways health insurance reform will lower health care costs for small businesses and is available now at www.HealthReform.gov.

"Small businesses drive our economy and create jobs, but they are struggling as health care costs continue to rise," Secretary Sebelius said. "The high cost of care is making it difficult or impossible for these businesses to offer care or grow their business. Health insurance reform will bring costs down and give small businesses the relief they need."

Senator Kirk Speaks on the CLASS Act

Senator Paul G. Kirk, Jr. spoke on the floor of the United States Senate this morning of October 28 in support of the Community Living Assistance Services and Supports (CLASS) Act. Senator Kirk was appointed to replace Kennedy. NCIL thanks Senator Kirk for his strong support of the CLASS Act in healthcare reform and encourages our members in Massachusetts to call his office and thank him for his support. His statement is as follows:

"I want to address a legislative initiative that will assist our senior or infirm citizens as part of our health care reform initiative. Today in the United States there are approximately 200 million people who are elderly or disabled. These individuals are some of our most vulnerable and often they are forgotten.

But they always had a friend and advocate in Senator Ted Kennedy. He was the premier legislative innovator. Senator Kennedy understood the current system is not working, that it cried out for innovation. He knew it was wrong that in order for individuals with disabilities and the elderly to receive the services and support they need, they had to stop working, spend down their savings, abandon their dreams, abandon their homes, and possibly go into a permanent facility. All the wrong incentives for individuals who deserve dignity in those fragile years.

All this, he felt, is directly contrary to our idea of living the "American dream." Senator Kennedy was not one to sit idly by. He acted. He acted to try to help as many of these men and women as possible. The community living assistance services and supports act, known as the CLASS Act, was at the heart of his efforts to help people with functional limitations and their families obtain the services and support they need in order to keep their independence and continue as active members of their communities. I am honored to take up that worthy cause.

Here's how the CLASS Act will help the middle class. Under the act, a worker in Massachusetts or any other state can choose to pay into a voluntary insurance program through affordable payroll deductions. After five years of those deductions, they would be eligible for a daily cash benefit of $50 if they became disabled. That money can make a huge difference in allowing a disabled person to live with independence and with dignity. For example, it can pay for having a ramp installed in their home or pay for needed transportation or purchase a commuter to work from home and remain self-sufficient.

Some have said this innovation is unsustainable, that it is just another government benefit that will become unaffordable in the years to come. But the Congressional Budget Office and other independent auditing agencies estimate the CLASS Act will be able to maintain its solvency for 75 years. The plan is self-funded and is a cost saver for Medicaid, since fewer people would need to push themselves into poverty in order to enroll in Medicaid and receive the care they need. The CLASS Act will correct that disincentive.

The CLASS Act is a realistic answer to the serious problems of our current system, and it's important to the lives of millions of Americans. Disability could suddenly strike any of us in the years ahead. As we work to provide health insurance to the tens of millions of Americans who do not have it, it is hard to understand why we should not meet the needs of millions of people with disabilities and the elderly who desperately need our help.

I hope very much that our colleagues will support the CLASS Act as an innovative and necessary part of the current health reform bill, and I look forward to further opportunities to advance this measure, and ultimately as a part of the needed health reform bill that is coming to the floor and will help and serve the American people to its ultimate enactment."

Contact the Editor: Eleanor@ncil.org

To advertise in the Weekly Advocacy Monitor, contact the Editor.

SEANLKELLY

NCIL WEEKLY ADVOCACY MONITOR (WhAM) 11-09-09

#69

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Posts: 215

11/09/09 13:43:03

National Council on Independent Living

Weekly Advocacy Monitor

Volume 7, Issue 34 November 9, 2009

1) What's Happening in the Nation's Capital?

House of Representatives Makes History with Passage of Healthcare Bill

2) National News

Back to the Senate!

Federal Olmstead Enforcement by CMS - A New Day?

Poverty and Disability Greatly Correlated, New Study Shows

Republicans Offer Alternate Plan as Amendment

3) State News

Oregon Becomes First State to Eliminate ICFs/MR

4) Announcements and Additional Resources

United We Ride National Dialogue Now Live!

VA Extends "Agent Orange" Benefits to More Veterans

1) What's Happening in the Nation's Capital?

House of Representatives Makes History with Passage of Healthcare Bill

On Saturday night, at about 11:15pm Eastern, the House of Representatives passed the America's Healthy Future Act of 2009, H.R. 3962. The vote was close, with a final tally of 220-215, mostly along party lines. There were 39 Democrats who voted against the bill and one Republican who voted for it. Never before has legislation to overhaul the nation's healthcare system passed either chamber in Congress. This was monumental, but only the first of the epic steps left in the process.

NCIL strongly encourages members to see how your member of Congress voted, then contact them. Thank those who voted for the bill, and express disappointment with those who voted against it. This is as important as calling to urge them to vote a certain way because this will not be the last vote! A final bill will have to be compromised and then voted on by both Chambers.

NCIL Policy Analyst Jason Beloungy attended the floor debate in the House. Several hundred citizens were trying to gain access to the debate and many were ardent opponents of the bill. Members of Congress are being flooded with the message that Americans don't support reform by passionate and vocal minority. We need everyone who supports reform and independence for people with disabilities to call their Senators and Representatives, or we may lose the opportunity.

During the debate, NCIL's two biggest priorities in HR 3962 were addressed. Congressman Frank Pallone took the podium to speak in support of the CLASS Act provision. Shortly after, Congressman Henry Waxman addressed his colleagues on the need to remove the barriers to long-term care in the community for Americans on Medicaid (the aim of the Community First Choice Option). NCIL applauds Chairmen Pallone and Waxman for standing up for the rights of people with disabilities, who should have a choice to live in the community and have options to make that possible regardless of income or work status. They said:

Mr. Pallone: The bill we are debating today includes the CLASS Act, a bill I sponsored, along with Representative Dingell, which would encourage individuals to plan ahead for future long-term care needs. But there are other things we can do to help increase the availability of home and community-based services. The Empowered at Home Act, H.R. 2688, which I sponsored with Representative DeGette, helps encourage States to improve and increase access to home and community-based services under their Medicaid programs. While we were not able to include these other provisions from the Empowered at Home Act in H.R. 3962, I hope that we can consider their inclusion in the final health reform bill that emerges from the conference with our Senate colleagues.

Mr. Waxman: I want to thank the gentleman from New Jersey for his leadership on the bill before us today and for his tireless efforts on behalf of low-income Americans who need long-term care. I support the elimination of barriers to the provision of home and community-based services under Medicaid, a result that the gentleman's Empowered at Home Act would achieve. …I will continue to work with you and other Members to enact legislation that gives State Medicaid programs a robust option for offering low-income Americans the choice of receiving long-term care services in the community rather than in a nursing home.

NCIL congratulates the Leadership of the House on their ability to pass this measure, as it contains several provisions that will help introduce fairness and equality to the long-term care and healthcare systems.

If you have questions about HR 3962, about the reform process, or about contacting you members of Congress, contact NCIL Policy Analyst Jason Beloungy at 202-207-0334 (toll-free 1-877-525-3400), ext. 1008 or at jason@ncil.org.

2) National News

Back to the Senate!

Pressure is mounting on the Leadership to pass a bill by the end of the year, but skepticism for is growing because efforts in the Senate have been delayed at each critical point. The skepticism is an acknowledgment that with only two months left in the year, Democrats are still a long way from sending a bill to the president's desk. The battle in the Senate is the next phase, and it will drag on in the coming weeks.

The Senate Majority Leader, Harry Reid, is still working on two barriers to reform in the Senate. One barrier is the cost-estimate or "score" from the Congressional Budget Office (CBO). Because the Majority Leader sent multiple proposals to be scored, it is taking longer than expected. The earliest a score will be released is by the end of this week, possibly pushing debate until the week of Thanksgiving. This delay will make it almost impossible for a final bill to be signed by the President before the end of the year.

The second barrier is garnering enough support to allow the legislation to go to a vote. Since Reid indicated that the bill includes the "Public Option", some moderate Democrats and an Independent Senator have said they won't support it and may even block the bill from a vote. Senator Reid and others in the Leadership need to convince their colleagues of the merits of the bill.

Stay tuned for more information about the Senate's legislation and for NCIL Action Alerts. These next few alerts will be some of the most important and full action by our membership will send a strong signal to Congress about the need for quality reform now!

Federal Olmstead Enforcement by CMS - A New Day?

Steve Gold Information Bulletin # 295

Ten years after the Supreme Court issued the Olmstead decision holding that unnecessary institutionalization violated the ADA and nine years after CMS wrote its ADA/Olmstead "State Medicaid Director" letters pursuant to this decision, CMS finally put some bite behind Olmstead.

On 10/30/09, CMS wrote the Missouri Department of Social Services that Missouri's MA home health services, which required people to be "homebound," was "not in compliance with Federal requirements." CMS pointed out that the Supreme Court in Olmstead, "reinforced the ADA by affirming the right of individuals with disabilities to live in their communities." CMS provided Missouri 30 days to change its policy or CMS could "proceed with compliance proceedings" which could "result in withholding Federal funding."

Just think, CMS took a step which reflects that civil rights of people with disabilities are real. Sure it's taken ten years, but maybe, just maybe, this CMS letter signals a new day. While confronting the "homebound" issue is obviously very important, the significance of what CMS did goes far beyond this one issue.

Does your state have a waiting list for people in nursing homes to receive sufficient MA services in the community so they will not need to be in an institution? If yes, then how does your waiting list "affirm the right of individuals with disabilities to live in their communities"? Waiting lists ensure just the opposite.

Does your state offer people who are at imminent risk of going into a nursing home meaningful services BEFORE they go into the institution? If no, then the failure to provide real services ensures that people will have to go into nursing homes and will not be able to live in their communities.

Wouldn't it be interesting if CMS really enforced Olmstead and told states that 10 years waiting for full implementation of Olmstead is far too long? Wouldn't it be a great CMS step to tell states that 10 years is more than enough time. Many states continue to dither because they do not believe CMS will do anything. Despite the Supreme Court's decision, States continue to genuflect to the nursing home industry and perpetuate unnecessary institutionalization in violation of Olmstead, in large part because CMS has shown no will to enforce the ADA. Will CMS take on these States?

It's not too far-fetched to believe CMS might. After all, CMS would not permit States to deny MA services based on race, religion or gender in violation of other federal civil rights statutes. Maybe CMS has begun to recognize disability and the ADA as a real federal civil rights issue.

And while we're thinking about federal enforcement of the ADA and Olmstead, what about the U.S. Department of Justice? Without affirmative, aggressive DOJ enforcement, schools would have remained racially segregated, voting provisions would have continued to be racially tinged, and women sports (Title IX) would have never been implemented.

Yes, with race and gender, the U.S. Department of Justice showed the country and many States that federal enforcement was real. It's truly thanks to DOJ that these abuses were stopped.

What about DOJ showing States -- 19 years after Congress enacted the ADA finding segregation (in 1990) existed and 10 years after the Supreme Court ruled in Olmstead E28093 that DOJ will affirmatively and aggressively enforce the ADA and will end the unnecessary institutionalization of people with disabilities?

Poverty and Disability Greatly Correlated, New Study Shows

Source: Chicago Tribune, by Mike Ervin

Hard economic times are even harder when you have a disability. But poverty and disability don't have to be synonymous if we design our policies well. A new report from the Center for Economic and Policy Research (a Washington-based think tank) titled "Half in Ten" states that almost 50 percent of working-age adults who experience poverty for at least a 12-month period have one or more disabilities.

People with disabilities, the report says, account for a larger share of those experiencing poverty than people in all other minority, ethnic and racial groups combined and are even a larger group than single parents. The extra costs associated with living with a disability such as purchasing expensive equipment like wheelchairs and catheters or obtaining specialized medical attention keep many disabled people and their families in poverty, the report notes.

The report also astutely observes that direct care workers who assist people with disabilities in their homes and communities are often themselves in poverty. The median income for the 3 million direct care workers in the United States is only $17,000 a year, the report says.

Fortunately, there are several steps we can take to ensure that disability doesn't spell poverty.

The first step is universal health care. The report stresses "the fundamental importance of health care reform, especially the provision of universal coverage, to anti-poverty efforts." The lack of good health insurance, the report says, "is one of the most significant drivers of income poverty and severe disadvantage." Another important step is for the United States to adopt "the kinds of paid-sick-day and paid-sick-leave policies that are already in place in all other similarly wealthy nations." At least 40 percent of private sector workers in the United States have no paid sick days or leave, the report says.

Third, we should ease the ridiculously harsh restrictions on assets and earnings imposed on those receiving Social Security Disability Income. The current Social Security policy basically requires you to impoverish yourself before you can get disability aid from the government.

And, fourth, we should pay a decent wage to the health care providers who do such a superb job in tending to the needs of the disabled.

It's clear that the current economic hardship is being made much worse for many people than it needs to be due to the disregard politicians and policymakers have for the well-being of Americans with disabilities and those who work in providing them with assistance. It's time for that to change.

Republicans Offer Alternate Plan as Amendment

Early last week, Republicans in the House released an alternate version of healthcare reform legislation and offered as an amendment to HR 3962 on the House floor on Saturday. House leadership restricted each party to one amendment.

The amendment, which was estimated by the Congressional Budget Office (CBO) to cost about $61 Billion over 10 years, takes a different approach and has different priorities for reform. The focus of the Republican legislation is to:

lower healthcare costs,
create universal access programs,
reduce "junk lawsuits",
encourage insurance pools to small businesses,
enhance health savings accounts, and
eliminate the insurance industry practice of rescission.

NCIL applauds provisions that work to eliminate the practice of rescission, the provision to enhance state-run high risk insurance pools and reinsurance programs, elimination of some requirements for guaranteed availability of insurance for people with pre-existing conditions, and exclusion of annual or lifetime caps on spending in health insurance coverage or plans.

However, the Republican proposal has no provisions to address the priorities laid out by NCIL's membership. Specifically, the Republican alternative does not include:

the Community First Choice Option,
the CLASS Act,
accessibility standards for medical and diagnostic equipment,
mental health and substance abuse parity language,
enhancement of benefits for insurance programs to include Durable Medical Equipment, or
language that goes far enough to end the discrimination against people with pre-existing conditions.

The CBO estimate of $61 Billion over 10 years is far less than the roughly $1 Trillion price of the Democratic plan because of the glaring differences. The Democratic plan passed on Saturday aims to cover the vast majority of legal citizens, while the Republican plan does not. The CBO estimated that after 10 years, 17 percent of legal, non-elderly residents won't have health-care insurance. The Republican alternative would have helped 3 million people secure coverage, which is offset by the growth in the population. The Democratic plan would cover 36 million more people and cut the uninsured population to 4 percent. Additionally, the aim of the Republican plan is to save money, but their plan only reduces the national deficit by $68 billion over the next 10 years, while the Democratic plan would reduce it by $104 billion.

Ultimately, the Republican Amendment failed a vote on the floor of the House on Saturday, and has no chance of passing the House as a stand-alone bill.

3) State News

Oregon Becomes First State to Eliminate ICFs/MR

As of the close of business November 5, 2009, Oregon became the first state in the nation to have no "Intermediate Care Facilities for the Mentally Retarded" (ICFs/MR) and no citizens residing in ICFs/MR in other states. This includes public and community facilities. Oregon is now operating 100% under the community waiver.

Before yesterday, the only other state operating with no public or private ICFs/MR was Alaska, which has about 10 people in out-of-state ICFs/MR.

4) Announcements and Additional Resources

United We Ride National Dialogue Now Live!

NOVEMBER 2-13, 2009

From United We Ride: It's here! The United We Ride National Dialogue begins today and we're looking forward to having you join us at www.uwrdialogue.org.

Do you have a suggestion or an idea about how to increase access to affordable and reliable transportation services for people with disabilities, older adults, and people with limited incomes? Please join the Dialogue now at www.uwrdialogue.org to share your best ideas! Over the next 12 days, you have the opportunity to participate in an online dialogue with other national, state and local stakeholders. Stakeholders like you can provide critical input to the Federal Interagency Coordinating Council on Access and Mobility (CCAM) and help the best ideas 'rise to the top' during the dialogue. Just click the link at the bottom to register for this free on-line dialogue! It is important that this dialogue be as inclusive as possible, so please spread the word.

For more information about this exciting new collaborative opportunity, please visit: www.UWRdialogue.org.

VA Extends "Agent Orange" Benefits to More Veterans

Source: Department of Veterans Affairs

Relying on an independent study by the Institute of Medicine (IOM), Secretary of Veterans Affairs Eric K. Shinseki decided to establish a service-connection for Vietnam Veterans with three specific illnesses based on the latest evidence of an association with the herbicides referred to Agent Orange. The illnesses affected by the recent decision are B cell leukemias, such as hairy cell leukemia; Parkinson's disease; and ischemic heart disease.

Used in Vietnam to defoliate trees and remove concealment for the enemy, Agent Orange left a legacy of disability that continues to the present. Between January 1965 and April 1970, an estimated 2.6 million military personnel who served in Vietnam were potentially exposed to sprayed Agent Orange.

In practical terms, Veterans who served in Vietnam during the war and who have a "presumed" illness don't have to prove an association between their illnesses and their military service. This "presumption" simplifies and speeds up the application process for benefits.

The Secretary's decision brings to 15 the number of presumed illnesses recognized by the Department of Veterans Affairs (VA). "We must do better reviews of illnesses that may be connected to service, and we will," Shinseki added. "Veterans who endure health problems deserve timely decisions based on solid evidence." See other illnesses previously recognized under VA's "presumption" rule as being caused by exposure to herbicides during the Vietnam War.

Contact the Editor: Eleanor@ncil.org

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SEANLKELLY

NCIL WEEKLY ADVOCACY MONITOR (WhAM) 11-16-09

#70

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Posts: 215

11/16/09 13:10:11

National Council on Independent Living

Weekly Advocacy Monitor

Volume 7, Issue 35 November 16, 2009

1) What's Happening in the Nation's Capital?

Healthcare Reform Update: Will the CLASS Act Survive?

2) National News

Act Now: Tell HUD to Include Universal Design in the Choice Neighborhoods Initiative

CLASS Act Would Not Increase Federal Deficit, AAHSA's Manard Asserts

3) State News

Access Becomes Hot Topic in Historic Gettysburg: Get In on the Action!

New York Study Finds High Rates of Abuse Against Women with Disabilities

4) Announcements and Additional Resources

2009 Member Outcomes: Showcase Your CIL or SILC!

Join the JFAAN Organizer's Forum to Support Community Organizing

Make Your Voice Heard In the Development of the National Disaster Recovery Framework

2010 Open Enrollment for Medicare Plans Began November 15; CMS Encourages Beneficiaries to Review Coverage

1) What's Happening in the Nation's Capital?

Healthcare Reform Update: Will the CLASS Act Survive?

The healthcare reform process has slowed after last weekend's drama, when the House of Representatives passed their version of reform. The Senate is still awaiting a cost estimate from the Congressional Budget Office (CBO). Once the cost estimate is in, the Majority leader will draft a final bill for the Democratic Caucus to review. This is a very "behind-the-scenes" process, chosen to ensure the bill has support from 60 Senators and can move to debate and vote on the floor of the Senate. The Majority Leader does not want to draw a negative reaction from the public on draft legislation, which could potentially kill the bill.

There is much unknown about the legislation that Senate Majority Leader Harry Reid sent to the CBO because he drafted it from the two very different versions from the Senate Finance and Senate Health, Education, Labor and Pensions (HELP) Committees, and added provisions of his own. One of those provisions is amongst the biggest points of contention among Senators, the government-run health insurance program called the "Public Option" This public option would be limited to eligible small businesses and people who do not get insurance through an employer or from the government.

To win support from moderate Democrats, Senator Reid included language that would allow states to "Opt-Out" of the federal plan. Despite the effort, there are several Democratic (and an Independent) Senators who have expressed their distaste with automatic inclusion. Without their support, the process to debate, vote on and pass a bill in the Senate becomes increasingly difficult. For that reason, Senator Reid has allowed Senator Thomas Carper (D-DE) to draft a "Plan B" Public Option. The Carper plan would establish a nonprofit board to offer coverage through state exchanges where private insurers failed to provide affordable insurance. While this idea of a "trigger" will satisfy some who hesitate to support the original public option, it may alienate other Senators who want it included.

The CLASS Act, which NCIL has supported throughout this debate, is still being discussed. Several Senators feel the CLASS Act may create federal deficits, despite amendments to ensure its fiscal solvency and a requirement that no money from the federal budget be used to pay for the program. Senator Reid has asked the CBO to "score" his legislative proposals with and without the CLASS Act.

NCIL will share details of the bill with our membership as soon as they become available. If you have questions about healthcare reform, please contact Policy Analyst Jason Beloungy, at 1-202-207-0334 (toll-free:1-877-525-3400), ext.1008 or at jason@ncil.org.

2) National News

Act Now: Tell HUD to Include Universal Design in the Choice Neighborhoods Initiative

Since its creation, the HOPE VI program, intended to rehabilitate and redevelop the "worst of the worst" public housing, has had some remarkable successes in some communities. The Department of Housing and Urban Development (HUD) intends to draw on the lessons of those success stories to create a successor to the HOPE VI program: the Choice Neighborhoods Initiative.

HUD believes that "A new $250 million Choice Neighborhoods Initiative will build on the lessons of HOPE VI and revitalize high poverty neighborhoods through transformative investments in distressed public and assisted housing and closer linkages with school reform and early childhood interventions. " The Senate approved the funds for Choice Neighborhoods in its appropriations bill, but the House allocated a similar amount for HOPE VI instead. HUD distributed a proposed bill to create the program and held a webcast to discuss the program.

The NCIL Housing Subcommittee Co-Chairs attended the webcast. We were able to question HUD staff on whether the new program would include Universal Design. They responded with a single word: "yes," which is good news for people with disabilities and older adults.

However, an examination of the text of the proposed bill reveals that only the existing laws would apply; Section 504 of the 1973 Rehabilitation Act, Uniform Federal Accessibility Standards, and the Fair Housing Act. Language mandating Universal Design does not appear to be included.

Therefore, the NCIL Housing Subcommittee is asking people to contact HUD with the simple message: The Choice Neighborhoods Initiative must require Universal Design. You can contact HUD at choiceneighborhoods@hud.gov. If you are interested in being part of the Housing Subcommittee, please contact NCIL Policy Analyst Lacy Pittman at 202-207-0334 ext. 1015 or lacy@ncil.org.

CLASS Act Would Not Increase Federal Deficit, AAHSA's Manard Asserts

Source: McKnight's Long-Term Care News and Assisted Living

Barbara Manard, vice president of the American Association of Homes and Services for the Aging, Wednesday countered criticism that the CLASS Act would contribute to the federal deficit. That is "a misunderstanding about how the federal budget works," she told McKnight's during AAHSA's annual conference in Chicago. The conference ended on Wednesday.

Several senators last month sent a letter to Senate Majority Leader Harry Reid (D-NV) asking him to keep the CLASS Act provision out of the healthcare reform bill because requests for benefits would exceed revenue generated through the program. Under the program, workers would contribute a portion of their paychecks to a federal trust. They would then be able to draw from the trust if they became disabled. The program would help to defray Medicaid costs and allow people to receive care in their homes. It is not yet clear whether it will appear in the Senate's version of healthcare reform.

Manard argued that the CLASS Act, which stands for the Community Living Services and Support Act, has been proven to be actuarially sound. Premiums and earned interest would finance it over the long haul, similar to the national flood control insurance program, she said. She disagreed that it would increase the deficit-that it would draw more money out of the federal budget than it would pay into it.

"What the main thing is to understand is that the bank account for the CLASS Act never runs out of money," she said.

3) State News

Access Becomes Hot Topic in Historic Gettysburg: Get In on the Action!

Source: The Evening Sun, by Erin James

What: The public is invited to a meeting to discuss compliance with the Americans with Disabilities Act in Gettysburg. ADA consultant James Varhola will be available to answer questions.

When: 6 to 8 p.m. Thursday

Where: Adams County Library, 140 Baltimore St., Gettysburg

After a two-year hiatus, Gettysburg business owners are once again making a concerted effort to discuss the Americans with Disabilities Act in the context of numerous complaints that have been filed in the historic town in the past several years.

The complaints filed by Hampstead, Md., woman Marilynn Phillips will be the subject of a meeting on Thursday at the Adams County Library in Gettysburg. The meeting is being organized by Eligius Wachter, a Gettysburg newcomer who calls himself a "concerned citizen" and "community organizer." "I'm just trying to find the facts and make some summary of them for the local people," Wachter said.

Wachter said he decided to take action after hearing the accounts of numerous business owners about their struggles to comply with the ADA, especially after being named in civil-rights complaints or federal lawsuits filed by Phillips. "I was just talking to people," he said. "Every time I talk to somebody I feel like I get a completely different chapter of the book."

For example, Wachter said he noticed that sidewalk space on Chambersburg Street had been reduced to a width of only four feet after a business there installed a concrete ramp to meet ADA accessibility regulations - "making it impossible for groups of people to pass by comfortably."

Wachter said he is also concerned about the potential implications of ADA compliance on historic buildings and other landmarks. "I feel that the historic integrity and that the business interests of landlords and owners have not been properly defended or understood as it may be defended," he said. "That shows that there's not a unified understanding of what the heck is going on."

Wachter said he is in Gettysburg "expanding on some business endeavors" and has been in town since early October. Though he is not a lawyer, Wachter said he did attend law school. He said he has received guidance and encouragement from Gettysburg Signs owner Gene Golden. "He welcomed me to make an effort to organize," Wachter said. "Previous major efforts at organization had not been successful. The community had tried." Read More.

New York Study Finds High Rates of Abuse Against Women with Disabilities

Source: Lower Hudson Journal News, by Candice Ferrette

WHITE PLAINS - Westchester women with mental or physical disabilities suffer high rates of domestic violence and the abuser is often an intimate partner, a recent county report suggests.

"Domestic Violence Incidence Survey of Women and Men With Disabilities," surveyed 350 Westchester County community-based social service organizations, including police departments and elected officials. More than half of the 50 organizations responding to the survey said there was at least one report of domestic violence from a person with disabilities within their group.

In a majority of the incidents - 87 percent - women were the victims. And, in more than 70 percent of those cases, the abuser was the woman's intimate partner, similar to rates among able-bodied people. "When we consider that domestic violence is mostly a silent crime among people with disabilities, and we had an average of almost 500 actual reports in one year - can you imagine how many people must be suffering in silence?" said Camille F. Murphy, director of the Office for Women.

Murphy, however, acknowledged that the data are limited. "We need to encourage more organizations to start collecting data on disabled victims of domestic violence so we have empirical evidence that thousands of women, and men, need our help," said Evan Latainer, county director of the Office for the Aging. Read More.

4) Announcements and Additional Resources

2009 Member Outcomes: Showcase Your CIL or SILC!

Please send NCIL one or two of your Center or SILC's biggest accomplishments of 2009. We are collecting your outcomes for our upcoming Congressional Briefing and 2009 Annual Report. This is an excellent opportunity to showcase your organization and promote Independent Living nationally!

Please send accomplishments in the form of outcomes.

Individual advocacy example: "Anytown Center for Independent Living transitioned 32 people from nursing homes and other institutions, saving the state and federal government $800,000."

Systems advocacy example: "Anytown Center for Independent Living removed 29 barriers in the transportation system in the city of Anytown, nearly 80% of those identified."

Please keep submissions as concise as possible. Submit your accomplishments via email to eleanor@ncil.org by Friday, November 27, 2009. Thank you!

Join the JFAAN Organizer's Forum to Support Community Organizing

The Justice For All Action Network will be hosting monthly one-hour calls, open to all disability organizers, to provide ideas and resources to each other to support and expand community organizing among people with disabilities!

Conference calls will be the 3rd Tuesday of each month, 1-2 pm Eastern time. Each month will have a set topic, with 3-4 speakers to share their experiences on that topic, focusing on how-to's, challenges, successes, and lessons learned. Then we'll have time for question & answer, and discussion. You don't have to be on the call each month; just join when you're interested in the topic.

First Organizer's Forum: Tuesday, November 17; 1-2 pm EST

Topic: Working Cross-Disability Experiences of collaborations between different disability groups, what was challenging and what made it work.

Speakers: Mike Bachhuber, Independent Living Council of Wisconsin, Inc.; Bill Henning, Boston Center for Independent Living; Courtney Jenkins-Atnip, Tennessee Disability Coalition.

Call-in number (same for each month): 712-432-0080; Code: 193134#

Upcoming topics: December 15: Social networking; January 19: Organizing State Coalitions; February 16: Media; March 16: Outreach and recruitment; April : Action strategizing.

The Organizer's Forum is put on by the national Organizing Workgroup of the Justice For All Action Network (JFAAN). The Justice for All Action Network is a national cross-disability coalition, led by disability groups run by persons with disabilities with support from allies, committed to building a strong and unified cross-disability movement so that individuals with disabilities have the power to shape national policies, politics, media, and culture. For more information, contact: Andy Imparato, American Association of People with Disabilities, 202 521-4301, AImparato@aapd.com; or Kelly Buckland, National Council on Independent Living, 202-207-0334, kelly@ncil.org.

Make Your Voice Heard In the Development of the National Disaster Recovery Framework

Source: FEMA

Many of you received a letter from FEMA Administrator Fugate about the National Disaster Recovery Framework last month. Some of you have been invited to participate in stakeholder meetings in communities across the country and now everyone's voice is needed to guide this process!

Please participate in the development of the National Disaster Recovery Framework. Please visit the web site to learn more about this initiative being led by the White House, the US Department of Homeland Security and the US Department of Housing and Urban Development.

Please go to www.DisasterRecoveryWorkingGroup.gov for more information and to http://www.disasterrecoveryworkinggroup.gov/questionnaire to provide your guidance to the process by entering your information on the website.

Thank you for helping ensure a very big response. Everyone has something to add. Please forward this to others who may be interested in having their voice heard as the National Disaster Recovery Framework is developed.

2010 Open Enrollment for Medicare Plans Began November 15; CMS Encourages Beneficiaries to Review Coverage

The Centers for Medicare & Medicaid Services (CMS) is encouraging Medicare beneficiaries to take advantage of the annual Open Enrollment period to make sure they have the best coverage available to meet their healthcare needs in 2010.

The Open Enrollment period begins on November 15th and runs through December 31st. It's the one time every year when all people with Medicare can review and, if necessary, change their current health care coverage.

Beginning on November 15th, beneficiaries can go to www.medicare.gov or call 1-800-MEDICARE (1-800-633-4227) to make changes in their Medicare prescription drug and health coverage. People in Original Medicare without prescription drug coverage can enroll in a drug plan or health plan that offers drug coverage during Open Enrollment. Read the entire CMS press release.

Contact the Editor: Eleanor@ncil.org

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SEANLKELLY

NCIL WEEKLY ADVOCACY MONITOR (WhAM) 11-23-09

#71

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Posts: 215

11/23/09 14:33:26

National Council on Independent Living

Weekly Advocacy Monitor

Volume 7, Issue 36 November 23, 2009

1) What's Happening in the Nation's Capital?

Senate Votes to Debate Healthcare, NCIL Priorities Hang Tight

2) National News

Mikulski Introduces Rosa's Law: "What You Call People is How You Treat Them."

Flowers for Algernon: Parents Wary of "Cure" for People with Down Syndrome; Scientists Persist

Google and YouTube Announce Automatic Captions!

Action Alert: Support the Campaign to Fund the National Housing Trust Fund

3) State News

Investigation Begins on Death at Infamous Pennsylvania Facility

4) Announcements and Additional Resources

Senate HELP Committee Holds Hearing on EEOC Commissioner

CMS Withdraws Medicaid Rehabilitative Services Proposed Rule

CMS Releases State Medicaid Director Letter on Medicaid Self-Directed Personal Assistance Services

1) What's Happening in the Nation's Capital?

Senate Votes to Debate Healthcare, NCIL Priorities Hang Tight

Last week, the Senate released its version of healthcare reform legislation, the Patient Protection and Affordable Care Act (HR 3590), after much anticipation. Senate Majority Leader Harry Reid (D-NV) released the bill after the Congressional Budget Office announced its cost to be $848 Billion dollars over ten years. Important updates include:

The CLASS Act, an initiative to create a national voluntary long-term care insurance program and one of NCIL's top priorities, was included in the bill. NCIL is pleased with this and other provisions that benefit people with disabilities, but some Senators are working to strip the CLASS Act from the bill because of pressure from the long-term care and life insurance industry. The only way it can become law is if we keep the pressure on!
The CFC Option was not only included in the Senate legislation, but significantly strengthened! Originally, it contained a five-year sunset provision, meaning it would automatically end after 5 years unless Congress voted to extend it. The sunset provision has been removed. In Committee, the CFC Option start date was proposed to be 2014, a nearly 5-year wait for any state to begin to allow people in Medicaid the opportunity to choose home and community based services. The proposed start date has been changed to 2010!

Reid felt compromises in the bill would garner enough support to move the bill through the Senate, where there are procedures that can make the legislative process lengthy and difficult. Reid needed 60 Senators to vote just to begin debate! The Majority Leader allowed a full day of debate, and afterwards the vote to begin debate passed 60-39. Debate will begin the week after Thanksgiving, and is expected to be full of contention and drama as some Democrats look to offer amendments to change the bill, and Republicans attempt to kill the bill.

Debate is expected to last for weeks, and it is uncertain if a bill will pass the Senate by the end of the year. The Majority Leader needs support from 60 Senators to bring the bill to a final vote. That means changes will be made to appease Senators who have stated that they will not allow the bill to be voted on.

NCIL is analyzing the bill now and will soon provide a synopsis to our membership.

2) National News

Mikulski Introduces Rosa's Law: "What You Call People is How You Treat Them."

Source: www.allamericanatriots.com

Senator Barbara A. Mikulski today introduced Rosa's Law, a bill that will eliminate the terms "mental retardation" and "mentally retarded" from the federal law books. U.S. Senator Michael B. Enzi (R-Wyo.), Ranking Member of the Health, Education, Labor and Pensions Committee, is the Republican sponsor of the bill. Senator Mikulski's statement as delivered on the Senate floor follows:

"Today I rise to introduce legislation that I'm calling Rosa's Law. This bill began by listening to the people in my own state. It began when a mother told me a compelling story about her own daughter, her family's efforts to give her daughter an opportunity for an education and to be treated with respect and with dignity. And at the same time, it began with the advocacy of not only she and her husband, but of her entire family, including her 14 year old son Nick who testified at the Maryland General Assembly.

"As a result of their effort, I'm introducing Rosa's Law. Before I say more about the bill, I want to tell you about the family. I want to tell you about the Marcellinos, Joseph and Nina who are parents to four children - Nick, Madeleine, Gigi and Rosa. They're in the gallery now watching this and I wish you could have been with me in my office as I met with the parents and talked with the family.

"Last year, at a roundtable on special education, I met Nina Marcellino for the first time. She told me about her daughter Rosa who was labeled at her school some years ago as mentally retarded. She told me about the stigma, the pain, and the anguish it caused both Nina and her husband, Rosa's brother and sisters as well as the Rosa herself.

Nina and Joseph reached out to their local disability advocacy organization, The Arc, to see what could be done to change the law. They then reached out to a member of the Maryland General Assembly, a wonderful Representative named Ted Sophocleus. He introduced legislation in the General Assembly that would change the word 'mentally retarded' and substitute it with the phrase 'an individual with an intellectual disability.'
"That's why I stand on the Senate floor today to introduce, at the request of the family, a law on behalf of this little girl and on behalf of all of the children of the United States of America who are labeled, stigmatized and bear a burden the rest of their lives because of the language we use in the law books.

"My law changes the phrase 'mentally retarded' to 'an individual with an intellectual disability' We did this in health, education and labor policy without in any way negatively impinging upon either the educational or other benefits that these children are entitled to. Read More.

Flowers for Algernon: Parents Wary of "Cure" for People with Down Syndrome; Scientists Persist

Source: LA Times, by Karen Kaplan

Is a wonder pill necessarily wonderful for people with Down syndrome? Scientists are hard at work developing a cure for the genetic disorder Down syndrome. But even if they succeed, nearly 60% of parents whose children have Down syndrome might take a pass.

In a survey conducted by researchers from the psychiatry department at the University of British Columbia in Vancouver, 27% of parents said they would not cure their children, and another 32% said they were unsure. Many parents expressed concern that a cure would change their child's personality, said Angela Inglis, a genetic counselor who worked on the survey. "Yes, it is a challenge, but your life will change in so many ways for the good, [but] you can't imagine not having him," said one parent who would decline a cure.

That feeling was not universal. Forty-one percent of parents said they would definitely treat their children for Down syndrome. Those parents said they were motivated by a desire to make their kids more independent and to give them more opportunities in life, Inglis said. She added that parents who had the hardest time caring for their children were the most inclined to seek a cure.

…The question about a cure might become less theoretical in the not-too-distant future. In patients with Down syndrome, the brain loses its ability to make an important neurotransmitter called norepinephrine. But researchers from Stanford University and UC San Diego found that in genetically engineered mice that have a rodent version of the disease, injections of a drug called xamoterol returned the animals to normal function.

Once inside the mouse brains, xamoterol converted into norepinephrine and allowed the mice to build nests and complete cognitive tests just like regular animals, according to a study being published in Thursday's edition of Science Translational Medicine. The drug kicked in within just a few hours, but its effects wore off quickly. Read More.

Google and YouTube Announce Automatic Captions!

Source: Google Public Policy Blog

Last week NCIL staff attended an event hosted by Google and YouTube called "Announcement on Accessibility and Innovation". They announced new initiatives to increase accessibility in their products, including the preliminary roll-out of automatic captioning in YouTube, an innovation that takes advantage of their speech recognition technology to turn the spoken word into text captions. They also announced that if you have a transcript of your video, you can upload it to YouTube and it will time the captions for you.

This is useful for anyone who is deaf or hearing impaired, but it will have broader effects as well. For example, YouTube captions can be automatically translated, making video more accessible across languages. And while we've had the ability to manually caption videos for a while, automatic captions and automatically timed transcripts lower the barriers and, they hope, helps open YouTube to everyone.

Indeed, with 20 hours of video uploaded to YouTube every minute, captioning YouTube through purely manual means would be very difficult. That's why they're excited about today's announcement. Please note that only 13 YouTube channels will feature automatic captions at this time so that we can gather feedback, but all video owners will be able to upload transcripts and automatically time them. Ken Harrenstien, the software engineer who led this project, describes today's announcements in more detail on the Official Google Blog. Read the rest of this article from their public policy blog.

Action Alert: Support the Campaign to Fund the National Housing Trust Fund

The National Low-Income Housing Coalition (NLIHC) is planning an advocacy campaign to take place on December 1 and 2 to urge funding for the National Housing Trust Fund (NHTF). NCIL supported the creation of the NHTF and was pleased to see its passage last year.

Unfortunately, the funding that was to come through Fannie Mae and Freddy Mac is not available at this time. NLIHC is urging Congress to capitalize the NHTF with at least $1 billion before the end of the year. The NCIL Housing Subcommittee is supporting this effort and urges members to contact their Senators and Representative. Members can contact the Capitol switchboard at 877-210-5351 and ask to be connected to the Senators' and Representative's offices. Get more information.

3) State News

Investigation Begins on Death at Infamous Pennsylvania Facility

Source: philly.com

It was after midnight in mid-April, and Greg Harlen would not stop screaming in his room at the Cardinal Krol Center. Harlen, 52, a resident of the Philadelphia Archdiocese-run home for [men with mental illness], was lying in his bed, writhing in pain. Both of his hips had been shattered.

Later that morning, staffers decided to call 9-1-1. Harlen, who had Down syndrome, was taken to Springfield Hospital - nearly 20 hours after he is believed to have suffered a mysterious trauma that broke his hips. He died in the hospital about a month later of complications from his injuries. "I can't imagine the pain he was in," said Harlen's sister, Sheila Phelan. "I don't understand why they didn't send him to the hospital long before they did."

Harlen's death has renewed scrutiny of the center's operations, five years after the state Health Department released a scathing report that said the 131-bed home in Delaware County had failed to protect its residents from sexual abuse by another resident - and other serious violations. "What's happening out there?" Phelan asked. "Is this normal, that people scream?"

Archdiocese spokeswoman Donna Farrell said she couldn't comment on Harlen's case because the investigation was ongoing. "Greg's death was a real loss and hit everyone here very hard," she said.

It remains unclear how Harlen was injured, whether he was beaten by another person or fell. He was unable to speak afterward. Harlen's family believes that he was assaulted by a caregiver there, but police are awaiting the neuropathology results from his autopsy before deciding whether to proceed with a criminal investigation.

Philadelphia's Department of Behavioral Health and Mental Retardation Services determined last month that Harlen, formerly of Northeast Philadelphia, should have been taken to the hospital sooner. The department found that, "given the intensity and duration" of Harlen's crying on April 16 and 17 and other indications that he was in pain, "more timely action should have been taken by the agency to assess Mr. Harlen for injuries and necessary medical treatment."

Records show that the center, in Marple Township across from Ss. Peter and Paul Cemetery, has repeatedly been cited by the state in recent years for a range of violations, some of which are recurring. Read More.

4) Announcements and Additional Resources

Senate HELP Committee Holds Hearing on EEOC Commissioner

On Thursday, November 19th, the Senate Health, Education, Labor and Pensions (HELP) Committee held a hearing on the nomination of Chai Feldblum for the position of Commissioner of the Equal Employment Opportunity Commission (EEOC). Chai Feldblum, a strong advocate for the ADA Amendments Act, was greeted by a packed room of disability advocates who eagerly support her confirmation. The nominee was introduced by House Majority Leader Steny Hoyer. She demonstrated her command of the issues as she answered numerous questions about disability rights and the ADA Amendments Act, which was became law last year. The EEOC is currently working on the rule making process for the ADAAA.

The hearing was festive as those in attendance honored HELP Chairman Tom Harkin (D-IA) on his 70th birthday. The entire room sang "Happy Birthday" to Senator Harkin, and NCIL extends birthday wishes to the Senator as well!

Advocates felt the hearing went well, and the nominee left no doubts that she was exceptionally qualified for the position. NCIL strongly supports the confirmation of Chai Feldblum and looks forward to a vote by the Committee, which is expected in a few weeks.

CMS Withdraws Medicaid Rehabilitative Services Proposed Rule

Source: CMS

The Centers for Medicare & Medicaid Services (CMS) is withdrawing the proposed rule, "Medicaid Program; Coverage for Rehabilitative Services" (72 FR 45201). Originally published in the Federal Register on August 13, 2007, the rule proposed to clarify the definition of Medicaid "rehabilitative services" and establish new documentation and other requirements.

This rule had been subject to a congressional moratorium put in place by two laws, the Medicare, Medicaid, and SCHIP Extension Act of 2007 (Pub. L. 110-173) and the Supplemental Appropriations Act, 2008 (Pub. L. 110-252), that prohibited the Secretary from taking any action, including publication of a final rule that was more restrictive with respect to coverage or payment for rehabilitative services than the requirements in place as of July 1, 2007. Before the expiration of the congressional moratorium, section 5003(d) of the American Recovery and Reinvestment Act of 2009 (Pub. L. 111-5), enacted on February 17, 2009, included a "Sense of Congress" that the Secretary should not promulgate as a final regulation the August 13, 2007 proposed regulation. In light of clear congressional concern as well as the complexity of the underlying issues and of the public comments received, CMS decided to withdraw the August 2007 proposed rule in order to assure agency flexibility in re-examining the issues and exploring options and alternatives with Congress and stakeholders.

A notice will be published in the Federal Register on Monday, November 23, 2009. If you have any questions about this withdrawal notice, please contact the CMS Office of Legislation.

CMS Releases State Medicaid Director Letter on Medicaid Self-Directed Personal Assistance Services

Source: CMS

Today, the Centers for Medicare & Medicaid Services (CMS) released a State Medicaid Director letter providing guidance on the implementation of section 6087 of the Deficit Reduction Act of 2005 (DRA), (Pub. L. 109-171), which amended section 1915 of the Social Security Act (the Act) to allow States to provide individuals with the option to self-direct personal assistance services. The purpose of this letter is to provide additional clarification and guidance for section 1915(j)(4)(B)(ii) of the Act, which permits States to allow participants to use their individual budget for "permissible purchases" (i.e., to acquire items that increase independence or substitute for human assistance) to the extent that expenditures would otherwise be made for the human assistance, and section 1915(c) Home and Community-Based Services (HCBS) waiver programs, in which States may offer self-direction and permit participants to purchase "individual directed goods and services."

Under the Medicaid self-direction option, participants are able to save or accumulate funds from their budgets for the purchase of goods, services, supports, equipment, supplies, or items that will increase independence or substitute for human assistance. In determining whether coverage is permissible, such goods, services, supports, equipment, supplies, or items must 1) be related to a need or goal identified in the State-approved person-centered service plan; 2) be used for the purpose of increasing independence or substituting for human assistance, to the extent the expenditures would otherwise be made for that human assistance; 3) promote opportunities for community living and inclusion; 4) be accommodated within the participant's budget without compromising the participant's health or safety; and 5) be provided to, or directed exclusively toward, the benefit of the participant.

The State Medicaid Director letter will also be posted on the CMS website. If you have questions about this announcement, please contact the CMS Office of Legislation.

Contact the Editor: Eleanor@ncil.org

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