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NCIL WEEKLY ADVOCACY MONITOR (WhAM)

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Weekly Advocacy Monitor

WhAM!

Volume 6, Issue 1 January 7, 2008

Editor's Note:

In an effort to enhance the accessibility of our website, we've done a little remodeling. Text size is now adjustable and the format has been simplified. For now, these changes are only demonstrated on the homepage. Feedback from our membership on accessibility and usability are critical! Please take a look at the new homepage and contact Eleanor at eleanor@ncil.org with comments or suggestions!

1) What's Happening in the Nation's Capital?. 2

Summary of FY 2008 Congressional Action. 2

2) National News. 3

Final 2008 Funding Bill Cuts IL 1.74%... 3

Community Choice Act Hearing Scheduled! 5

CMS Transition Completion Timeframe Cut by Two Thirds. 5

Lawmakers, Scientific Community Attack Over-Drugging in Institutions. 6

CDC to Begin Testing Trailers for Formaldehyde. 7

3) State News. 8

Marca Bristo Named Chicagoan of the Year! 8

NY Election Board to Submit New Plan to Meet Voting Requirements. 9

4) Announcements. 9

NCD Public Quarterly Meeting Coincides with SILC Congress 2008. 9

NSCIA Membership Offer 10

5) Additional Resources. 10

Developing Partnerships with Policymakers: Tips for the Visit 10

Sample Letter of Invitation. 11

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

Source: Kaiser, CQ Daily

The Presidential Caucuses and Primaries are in full swing! Senator Barack Obama of Illinois (D) and Arkansas Governor Mike Huckabee (R) have been declared the winners of the Iowa presidential caucus. Tomorrow, January 8^th, New Hampshire's first-in-the-nation primary will be held. In the meantime, Senators Joseph Biden (D-DE) and Chris Dodd (D-CT) have dropped from the race.

President Bush signed into law a $555 billion spending bill, but criticized Congress for including nearly 10,000 earmarks, worth about $10 billion, the Washington Post reports. The package includes the 2008 Labor-HHS-Education appropriations bill and the 10 other appropriations bills, as well as $11.2 billion in emergency funds and $70 billion in additional funds for the wars in Iraq and Afghanistan. The Labor-HHS-Education section of the package includes $600.1 billion in total spending and $145.1 billion in discretionary spending. The package in large part meets the overall spending levels of the $932.8 billion requested by Bush but shifts billions of dollars to healthcare and other priorities supported by Democrats. However, the package also includes a nearly 2% cut in funding across the Departments of Labor, Health, and Education.

On December 28^th President Bush vetoed a $696 billion defense-policy bill (HR 1585) that included improvements to veterans' health care benefits and pay increases for service members. The House will begin the second session of the 110^th Congress when it reconvenes January 15^th. The Senate's second session will begin January 22^nd.

Summary of FY 2008 Congressional Action

The departments and agencies of the executive branch of the federal government receive annual appropriations through 12 separate funding bills, each controlled by a subcommittee of the House and Senate Appropriations Committee. Spending bills are passed from subcommittee to committee to chamber to conference, and upon final passage from both chambers, to the

President for signature.

The House completed their 12 appropriations bills by the start of the 2008 fiscal year, on October 1st, 2007. However, the Senate did not, leading to a continuing resolution (CR) to fund government operations through November 16th. On November 1st, 2007, House and Senate Conferees approved H.R. 3043, providing FY 2008 appropriations for Labor-HHS-Education. President Bush vetoed this bill on and on November 15th the House failed to override. The full text and legislative history of FY 2008 appropriations are available on the Library of Congress "Thomas" website at thomas.loc.gov/home/approp/app08.html.

A second CR was passed November 13^th as a part of the Defense Appropriations bill, and funded government operations through December 14^th. A third CR was signed into law Dec 14^th, which provided operation funds through December 21^st. Finally, a fourth CR was signed on December 21^st to provide funding until December 31^st, at which point the Consolidated Appropriations bill went into effect.

2) National News

Final 2008 Funding Bill Cuts IL 1.74%

The recently passed Consolidated Appropriations Act of 2008, H.R. 2764, features widespread spending cuts, and the Independent Living Program was not spared.

The Department of Education, which includes the Independent Living Program, was among programs receiving the most severe budget cuts. Others suffering similar cuts were the Departments of Labor and Health and Human Services. Division G of the law (P.L. 110-161) provides FY 2008 appropriations for the Departments of Labor, HHS, and Education.

One of the methods Congress used to constrain total spending in the Consolidated Appropriations Act was across-the-board spending cuts. However, the cuts were not government wide, as had been the case with some so- called omnibus appropriations bills in earlier years, but instead cuts were applied to only six divisions of the act, ranging in size from a 0.25% cut to Legislative Branch funding to a 1.747% cut to funding for the Departments of Labor, Health and Human Services, and Education (Labor-HHS-Ed).

The bottom line for the Independent Living Program is that Part B (state grants) was funded at $22.1 million and Part C (Centers for Independent Living) at $73.3 million for Fiscal Year 2008. Last year, IL received $74.6 million. A funding chart for Department of Education programs is available in PDF and Excel.

Analysis: It is clear that appropriators in Washington have not heard about the success of the IL Program and the increased quality of life independent living provides to their constituents. NCIL cannot stress enough the need for members to engage their federally elected officials to garner increased funding for Fiscal Year 2009 and support for the Reauthorization of the Rehabilitation Act. There are CILs in all 56 states and territories, and the District of Columbia and in all but 5 of the 435 Congressional districts across the country. Maintaining communication with your two senators and one representative is key to keeping disability policy priorities in the forefront for your federally elected officials. If each CIL invited their 2 senators and one representative to visit their Center, we could help educate appropriators and policymakers understand the importance of the Independent Living Movement the Title VII Program that supports it. Over the next year, NCIL will focus our efforts on supporting members to host, educate, and develop relationships with federally elected officials. Now, more than ever, your help is needed to launch a grassroots campaign!

TAKE ACTION: Engage Your Members of Congress, here's how:

Lead Members on a Tour! Centers for Independent Living provide services and supports for people with disabilities, so show your Senator or Representative what Independent Living is and how your Center empowers consumers and enhances the community. Members and their staff would be delighted to meet consumers, staff, and other constituents at your Center. You can also invite your

partners to participate, too!

Invite Members to Attend an Event.If you are celebrating a new building, program, or holding you're a community event, invite your member of Congress

to attend and participate.

Involve the Press. Work with your Member's office to include local reporters on tours and events. Give the Congressperson a chance to show their constituents that they support consumer-directed services for people with disabilities.

Include the Staff. Congressional staffers are their boss' eyes and ears. When you invite Senators and Representatives, don't forget to invite the staff who handle appropriations, housing, transportation, healthcare, and/or other issues

that highlight the work of your Center.

Schedule a Meeting in the District Office: Request a meeting, and then visit ncil.org for materials and talking points. Be sure to bring a few nice photos of your Center for the meeting. You can visit the members' websites (www.senate.gov and www.house.gov), look in the blue pages of your local phone book, or call the Capitol switchboard at (202) 224-3121 to get the phone number for the District Office. Simply introduce yourself and work with the scheduler or appointments secretary from there. Below are ways you can engage your legislators, a legislative summary of FY 2008 appropriations, and a Sample Letter of Invitation. If you have any questions or concerns, please contact Deb Cotter, NCIL Policy Analyst, at deb@ncil.org (202) 207-0334, ext 1008. NCIL stands ready to help you.

Community Choice Act Hearing Scheduled!

Source: ADAPT

The hearing on CCA and other long term care issues will be held on Wednesday, January 16, 2008 at 10 am.

The hearing will be held by the Health Subcommittee of the House Energy and Commerce Committee. The details are still being worked out but as soon as we know, we will let you know.

We need a BIG turnout, like we had for the Senate hearing. If you have an orange shirt, wear it because it showed up very well not only in the hearing room, but on the internet as well! The disability community united can never be divided!

This hearing will keep the momentum going for passage of CCA and reform

of long term services and supports system.

Contact members of the House Energy & Commerce Subcommittee on Health and ask them to attend this hearing. A complete list of subcommittee members can be found found online. It is critical members come to the hearing. Tell them the institutional bias in this country must end. Too many people are locked away in nursing homes away from their family, friends and community.

It is important to keep pushing Money Follows the Person and getting it implemented in the states, BUT it is also equally important to enact CCA for the entire country! This hearing is the next step... Please come to Washington DC and attend the hearing if possible and or pick up the phone and let your voices be heard. Call the Congressional Switchboard at 202-224-3121 and ask for your elected member of Congress.

CMS Transition Completion Timeframe Cut by Two Thirds

The NCIL PAS Committee will be submitting testimony to CMS regarding Medicaid's targeted case management regulations. NCIL is encouraging all members to write to CMS. The NCIL Board of Directors has a meeting scheduled with Administrator Weems February 25^th to discuss this interim final rule; Optional State Plan Case Management Services and transitioning Medicaid eligible individuals out of nursing homes.

Steve Gold: Medicaid's Targeted Case Management: Information Bulletin

CMS has issued an "Interim Final Rule" which will limit federal reimbursement for "transitioning to a community setting" to 60 days from the current 180 days. CMS has offered no explanation for the reduction and offered no examples of States' abusing the 180 days or any other reason for the reduction.

While it would be terrific if all the work could be accomplished and the person transitioned to the community within 60 days, we all know that in many cases that is not possible. Even CMS does not respond to SSDI or Medicare inquiries within 60 days! Read the entire Interim Rule.

TAKE ACTION! Write to the Department of Health and Human Services and let Secretary Michael O. Leavitt hear your concern. This CMS rule was issued on 12/4/07 and the comment period ends on [2/4/08]. You must have your comments in by [February 4^th]. Remember to cite correct CMS file number: CMS-2237-IFC

You can electronically submit comments. Click on the link "submit electronic comments on CMS regulations with an open comment period." Use Word format. You may also submit comments by regular mail: Department of Health and Human Services, Attention CMS -2237 - IFC / P.O. Box 8016 / Baltimore, MD 21244-8016 / Re: Case Management Services' Interim Final Rule"

Lawmakers, Scientific Community Attack Over-Drugging in Institutions

The following two articles have appeared prominently in the Wall Street Journal and New York Times, respectively.

Nursing Homes Struggle to Kick Drug Habit / Wall Street Journal (excerpted), by Lucette Lagnado

…Medicaid in 2005 spent $5.4 billion on atypical antipsychotic medicines -- more than it spent on any other class of drugs, including antibiotics, AIDS drugs or medicines to treat high blood pressure. Atypical antipsychotics are approved for schizophrenia and bipolar disorder. But in what is known as "off label" use, doctors often prescribe the drugs to elderly people with dementia.

The widespread use of antipsychotics among the elderly has begun to draw criticism from regulators, researchers, lawmakers and some in the nursing-home industry. Sen. Charles Grassley, the ranking Republican on the Senate Finance Committee, this month asked several drug manufacturers for records on how they may have marketed these drugs for use in geriatric patients. He also has asked the Inspector General of the Department of Health and Human Services to investigate use of the drugs in nursing homes.

…According to CMS, nearly 21% of nursing-home patients who don't have a psychosis diagnosis are on antipsychotic drugs. …Last year, CMS instituted new guidelines to limit the use of antipsychotics. Even so, under federal rules, it's still easier for nursing homes to get reimbursed for giving patients extra pills than it is for hiring extra staff.

An elderly person with Alzheimer's often isn't able to refuse antipsychotic drugs, says Cynthia Rudder, of the Long-Term Care Community Coalition, a New York patient-advocacy group. "You are basically quieting them against their will, and it is absolutely horrendous," she says. Family members can object to the use of such drugs. But they risk having the facility threaten to discharge their relative on grounds that they pose a danger to themselves or others. Read the Article in Full.

Drugs Offer No Benefit in Curbing Aggression, Study Finds / NYT (excerpted), by Benedict Carey

The drugs most widely used to manage aggressive outbursts in intellectually disabled people are no more effective than placebos for most patients and may be less so, researchers report. The finding, being published Friday, sharply challenges standard medical practice in mental health clinics and nursing homes in the United States and around the world.

In recent years, many doctors have begun to use the so-called antipsychotic drugs, which were developed to treat schizophrenia, as all-purpose tranquilizers to settle threatening behavior - in children with attention-deficit problems, college students with depression, older people with Alzheimer's disease and intellectually handicapped people.

…The study authors, who included researchers from the University of Wales and the University of Birmingham in Britain and the University of Queensland in Brisbane, Australia, wrote that their results "should not be interpreted as an indication that antipsychotic drugs have no place in the treatment of some aspects of behavior disturbance." But the routine prescription of the drugs for aggression, they concluded, "should no longer be regarded as a satisfactory form of care." Read the Article in Full.

CDC to Begin Testing Trailers for Formaldehyde

Source: FEMA

The Federal Emergency Management Agency (FEMA) and the Centers for Disease Control and Prevention (CDC) announced today that testing for formaldehyde levels in trailers and mobile homes will begin Friday, December 21, 2007. Testing will take place in Mississippi and Louisiana. The testing comes in response to a request from FEMA for assistance in answering questions related to indoor air quality and health in order to answer concerns raised by residents and community members. View Press Release in Full.

3) State News

Marca Bristo Named Chicagoan of the Year!

Each year since 1994, Chicago has honored a handful of people whose actions have changed life in the region for the better. This year we honor a champion of the disabled, an African American publisher, a world-renowned chef, a mother who turned loss into hope, a lifesaving animal lover, a kid helping other kids, and a longtime advocate of tolerance and diversity. At a January luncheon at the Four Seasons, Chicago will celebrate the achievements of these seven remarkable individuals and reward them each with a $1,000 donation from the Chicago Tribune Foundation for the charity of their choice. [Picture: Marca Bristo poses for a headshot as Chicagoan of the Year.

Spirit Triumphant: For many people, the new $13-million headquarters of Access Living, an advocacy group for people with disabilities, stands as a monument to smart design and community service. But for Marca Bristo, the group's president and CEO, the environmentally friendly building (at 115 West Chicago Avenue) is also a triumphant symbol of what people with disabilities can accomplish. "We knew we were stretching a lot," says Bristo, who uses a wheelchair. "That's part of the disability experience: taking risks and having a tenacious sense of can-do-it-ness."

Paralyzed from the chest down at the age of 23 after a 1977 diving accident, Bristo has backed ambitious projects for most of her adult life. Two years after her accident, she took the helm of the newly formed Access Living, which, among other accomplishments, has helped push to get wheelchair lifts on Chicago Transit Authority buses and improved accessibility to Chicago public schools. Today, with an annual budget of $3.7 million, the organization provides housing, in-home assistance, and other services and programs for more than 1,000 people a year. In addition, Access Living fields 20,000 calls for information and referrals annually.

Bristo has been a national leader as well, helping write the Americans with Disabilities Act of 1990, and serving as the chair of the National Council on Disability from 1994 to 2002. As the vice president of North America for Rehabilitation International, Bristo participated in the negotiation sessions for the United Nations' Convention on the Rights of Persons with Disabilities, which the UN adopted in 2006.

"She has a clear, powerful vision for the disability community," says Andrew J. Imparato, the president and CEO of the American Association of People with Disabilities, which is based in Washington, D.C. "She's one of our greatest assets in the disability movement."

Bristo-who is 54, married, and the mother of two teenagers-relishes the attention currently focused on the Access Living headquarters and its "universal" design-that is, a design that accommodates the needs of people with and without disabilities. (The building was designed by Jack Catlin of LCM Architects, who also uses a wheelchair.) "Things are coming full circle," Bristo says. "People are coming to us, and that's a tremendous feeling. The things we've been advocating are not just for a marginal group of people; they're for the society as a whole. Disability affects all of us. It's time that we normalize and accept it rather than perceive it to be at the margins of our society."

NY Election Board to Submit New Plan to Meet Voting Requirements

Source: Newsday.com, by Valerie Bauman

The state Board of Elections is expected to submit a new voting machines plan to a federal judge Friday, which would be its last chance to develop a timeline for complying with a federal election law intended to improve voting accuracy and accessibility.

U.S. District Court Judge Gary Sharpe made it clear last month that the board must find a way to meet the requirements of the Help America Vote Act, or he could appoint a special master to run elections and even put board members in jail on contempt charges. Read the Article in Full.

4) Announcements

NCD Public Quarterly Meeting Coincides with SILC Congress 2008

The National Council on Disability (NCD) will hold its next quarterly meeting at the New Orleans Marriott at the Convention Center, 859 Convention Center Boulevard, New Orleans, Louisiana, beginning Monday, January 28, 2008, from 11:00 a.m. until 5:30 p.m.; Tuesday, January 29 from 8:30 a.m. until 5:00 p.m.; and Wednesday, January 30 from 8:30 a.m. until 4:45 p.m. This meeting is open to the public. There will be time designated for public comment, supported by a toll-free call-in line, and your input is appreciated. You can also provide with written comments by e-mail, fax, or mail.

Public comment sessions will be held Monday, January 28 from 5:00 p.m. until 5:30 p.m. CST and on Tuesday, January 29 from 4:30 p.m. until 5:00 p.m. CST. The toll-free call-in number is 888-810-3951, and the pass code is "NCD Council Meeting." There will also be a reception at the hotel for all meeting participants, audience members, and people with disabilities from the community on Tuesday, January 29 from 5:00 p.m. to 6:30 p.m.

NSCIA Membership Offer

A Message from the National Spinal Cord Injury Association: We want everyone living with SCI/D to benefit from our efforts. That's why we are writing to tell you about an important opportunity from Medtronic. For each person who becomes a member of NSCIA before January 15^th, Medtronic will donate $5 NSCIA. Members receive a variety of benefits that are not available to the general public, primary among them our bi-monthly publication, SCI Life, filled with issue-driven articles and news of interest to the SCI/D community and SCI e-news, our monthly member newsletter. To learn more about all the benefits available to members, check out www.spinalcord.org. You'll find more than enough reasons to join, including free membership before January 15^th.

5) Additional Resources

Developing Partnerships with Policymakers: Tips for the Visit

The more a legislator understands and feels invested in the work of your Center, the more likely he or she will be willing to go to bat for your legislative initiatives. Direct involvement fosters the strongest, most enduring relationships. Here are some ways of encouraging it:

Involve legislators in celebrating your accomplishments. When you celebrate an accomplishment, recognize a special donor or consumer, or hold a gala anniversary party or other special event, invite your legislators. Send an invitation to each legislator's local district office as well as to the main office in DC or at the state capital (a legislator will often send a staff person if he or she can't make it). Follow up the invitation with a phone call. If you send out a press advisory about the event, enclose a copy with the invitation to legislators. This lets them know that local press might cover the event, increasing their own motivation to attend. Get into the habit of sending press releases to local papers that report on events after they happen. If legislators attend, be sure to mention it in the release. Better yet, send out a photo of legislators at your event along with your press release and print the photo in your newsletter. Send a copy of the photo with your thank-you to each legislator who attended and add them to your mailing list.

Involve legislators in public discussions of community initiatives. If you hold a public meeting or community discussion, invite your legislators. Help them understand that as a CIL, you are grounded in the community and are responsive to community needs and preferences. If they attend, use the techniques described above in reference to celebrations to recognize and thank them for

their efforts.

Use relationships with municipal officials to build legislative support. Effective legislators are highly responsive to the needs and desires of local governments. Be sure to let them know that you are working with local officials. Communications to legislators from local officials can be especially helpful in

supplementing your own advocacy efforts.

Help legislators take credit where credit is due. Did your Center change a local or state policy to enhance the lives of people with disabilities? Was a local legislator instrumental in pulling together a community initiative or working with community partners and/or local officials for people with disabilities? Then let them know how much you appreciate their efforts. Thank them in personal letters, in newsletter articles, and letters to the editor.

CAUTIONARY NOTE:Non-profit organizations 501(c)3s are prohibited from endorsing candidates or otherwise participating in political campaign activities. Use your judgment, especially during campaign season. It's OK to thank legislators publicly, but scrupulously avoid any communication that appears to be urging folks to vote for-or against-them!

Sample Letter of Invitation

Date

The Honorable John Doe
1234 Longworth House Office Building
Washington DC 20515
Sent via facsimile: (202) 123-4567

Dear Representative Doe:

I am writing to invite you to Anytown Center for Independent Living (ACIL) in Anytown, ST to tour our facility and meet with staff, consumers, and myself to learn more about the Independent Living Program on [propose date when CIL is busy with consumers and/or community groups] or another time you are in the district.

We appreciate your support of issues affecting people with disabilities and would like to show you how the Anytown CIL works with people with disabilities and others to help our community thrive.

I can be reached directly at (123) 456-7890 or yourname@cil.org. We welcome the opportunity to host you next time you are in Anytown.

Thank you for your consideration.

Sincerely,

Jane Smith
Executive Director

Anytown Center for Independent Living
1234 Main Street
Any Town, ST 12345

Phone: (123) 456-7890
Fax: (123) 456-7891

Email: Jdoe@acil.org

Last Edited By: SEANLKELLY 01/17/08 00:18:29. Edited 1 time.

SEANLKELLY

NCIL WEEKLY ADVOCACY MONITOR (WhAM) 01-14-08

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Posts: 209

01/17/08 00:20:19

Weekly Advocacy Monitor

WhAM!

Volume 6, Issue 2 January 14, 2008

Editor's Note:

NCIL has some very exciting new opportunities available on our website, with more to come in the near future. If you have not already, check out our Job Openings, new information on this year's Annual Conference including our Call for Proposals, and our 2008 Fundraising Campaign.

You can also now apply for funding to bring an IL Net training to your area, or search all of ncil.org from the homepage!

1) What's Happening in the Nation's Capital?. 2

2) National News. 2

CCA to be Heard in the House January 16^th, 2008. 2

75% Rule Undermined, More Progress Expected This Year 3

PARITY: Researchers Stress Importance Of Out-Of-Network Benefits. 4

Voting Rights Issues Clash with Federal Priorities as Election Heats Up. 5

House Releases 21^st Century Communications / Video Accessibility Act 7

Including People with Disabilities in Emergency Preparedness Activities. 8

3) State News. 9

SKIL Annual Meeting Update. 9

"Patients in Peril 2008" 9

Disability CIL Tackling Youth Incarceration, Seeking Input 10

4) Announcements. 10

MFP Rebalancing Demonstration Stakeholder Teleconference. 10

Working Life: Towards a Lifestyle of Employment For All 11

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

Source: Kaiser, CQ Daily

The House returns from recess on Tuesday, while the Senate continues convening only for pro forma sessions for one more week. Federal Reserve Chairman Ben Bernanke appeared before House Budget to discuss the near-term outlook for the U.S. economy. He predicted no recession for the near future.

Presidential Candidates are campaigning in Michigan for the January 15^th primary. Due to legal battles between states, Obama and Edwards will not be allowed to campaign in Michigan or have their names appear on the ballot. Michiganders should note that typical write-in rules do not apply in this case and that they must vote "uncommitted" in order to effectively vote for either of these two candidates.

January 19: Nevada Caucuses, South Carolina Republican Primary

January 26: South Carolina Democratic Primary

January 29: Florida Primaries

This week House Committee work will include:

CCA Hearing! The House Energy and Commerce Health Subcommittee will hold a hearing on the Community Choice Act entitled, "Medicaid's role for Americans with Disabilities." 10 am, Wednesday, 2123 Rayburn.

The Ways and Means Social Security Subcommitteewill hold a hearing on the effects of Social Security provisions affecting some public employees and other workers and their families who face hardships in retirement, or in the event of disability or death. 10 am, Wednesday, 1100 Longworth.

2) National News

CCA to be Heard in the House January 16^th, 2008

The Community Choice Act of 2007 will be heard in the House Energy and Commerce Subcommittee on Health January 16^th at 10:00am EST in room 2123 Rayburn House Office Building. The hearing is titled "Helping Families with Needed Care: Medicaid's Critical Role for Americans with Disabilities" This hearing will keep the momentum going for passage of CCA and focus on long term services and supports.

If you can come to Washington DC to attend the hearing, it will show legislators this is an important issue to the disability community! If you have an ADAPT orange T-shirt, wear it for solidarity. This hearing will also be accessible via webcast.

Contact members of the House Energy & Commerce Subcommittee on Health and ask them to attend this hearing. A complete list of Subcommittee members can be found online. It is critical members come to the hearing. Tell them the institutional bias in this country must end. Too many people are locked away in nursing homes away from their family, friends and community. It's time for change.

Please contact them, let them know why you care, and ask them to support the Community Choice Act, H.R. 1621. This is a national problem and together we can create a national solution. The House Energy and Commerce Committee is one of the "committees of jurisdiction" for the CCA in the House, and will play an important role in its passage.

For more information contact Judy R. Roy at: bhamilc1@bellsouth.net or Elizabeth Leef at 202-207-0334 ext. 1015; email elizabeth@ncil.org.

75% Rule Undermined, More Progress Expected This Year

The President recently approved the new Medicare, Medicaid, SCHIP Bill, S. 2499. Although the primary focus of the bill was to avert a 10% Medicare physician payment cut in 2008, the bill also addresses CPR's rehabilitation priorities.

Medicare's 75% Rule: The legislation will permanently freeze implementation of the 75% Rule at the 60% level as well as allow comorbid (occurring at the same time) conditions to continue to count toward meeting the rule's threshold. Additionally, the bill requires that HHS study beneficiary access to inpatient rehabilitation services and make recommendations for classifying inpatient rehabilitation hospitals and units. These 75% Rule provisions are completely inline with CPR's priorities and constitute a huge victory for CPR Members (including NCIL) and other stakeholders who worked to educate legislators about the importance of access to rehabilitation and its impact on independent living!

However, many issues of importance to the disability community were not addressed in this bill, including the Medicare Independent Living Act (or elimination of the "in-home rule"), Ending the Medicare Waiting Period Act, or acknowledgement that competitive bidding programs for durable medical equipment can impact access to equipment necessary for people with disabilities to live independently. NCIL will continue to advocate for the rights of people with disabilities and consumer control.

Lawmakers To Address Unfinished Policy Changes in Legislation This Year
Source: Congressional Quarterly

"Lawmakers are planning to address Medicare, SCHIP and Medicaid policy changes they had hoped to make last year in new legislation that would stop a 10% cut to Medicare physician fees scheduled to take effect June 30. CongressDaily reports, "With health care emerging as a top issue with voters, the election year might put increased pressure on lawmakers to present at least a few new health policies," although some proposals could draw veto threats.

Senate Finance Committee Chair Max Baucus (D-Mont.) and ranking member Chuck Grassley (R-Iowa) "want to explore Medicare changes that did not make it into last year's physician pay fix bill because time ran out". Those changes include measures supported by the Bush administration, such as health information technology requirements and proposals on mental health parity and genetic nondiscrimination. Committee members also might try to rewrite rules regarding Medicare Advantage plan marketing after the Bush administration last year rejected a proposal that would have given states more flexibility in regulating

the plans.

In addition, lawmakers are "likely to respond to the administration's latest attempts to stop states from expanding Medicaid eligibility" beyond 250% of the federal poverty level. A Baucus aide said the senator is planning to closely watch HHS this year to make sure its actions are consistent with the law.

Sen. Olympia Snowe (R-Maine), who negotiated SCHIP legislation that President Bush vetoed twice, said she hoped the Bush administration would be more willing to work with Congress this session. She said, "The administration has failed to recognize the way to achieve results for uninsured children is through building legislative consensus, not executive fiat"."

NCIL encourages members to talk with your elected representatives. If they do not hear from you, you cannot expect them to advocate for you! Pick up the phone and help advance disability rights in this critical area!

PARITY: Researchers Stress Importance Of Out-Of-Network Benefits

Source: Health Affairs, by Chris Fleming

Congress is on the verge of passing legislation mandating that health plans cover mental health (MH) and substance abuse treatment to the same extent that they cover other medical and surgical treatment. In a study published December 18 on the Health Affairs Web site, researchers say that passage of either the Senate or House version of this legislation would constitute a major improvement over the current 1996 Mental Health Parity Act, which only guaranteed equal annual and lifetime payment limits. However, the authors also warn that parity legislation could actually reduce access to MH treatment for some patients if it does not facilitate treatment by providers outside insurers' networks.

The study finds that, in 2005, only a minority of mental health providers in the national capital area participated in networks affiliated with the Federal Employees Health Benefit (FEHB) program, Medicare, Medicaid, or private insurance coverage. Only 38 to 49 percent of the area's psychiatrists, psychologists, and social workers were members of any network. Participation in FEHB networks was limited to approximately one-third of clinicians, and only 44 percent of FEHB patients received MH care from network clinicians.

"Our study shows that even in an area relatively rich in mental health resources such as Washington, D.C., and its surroundings, plan networks are not equipped to meet the full need for mental health treatment," said lead author Darrel Regier, executive director of the American Psychiatric Institute for Research and Education (APIRE). "Maintaining the out-of-network option is essential to ensuring access to treatment."

The version of parity legislation passed by the Senate would allow plans to vary the types of mental disorders covered under parity and to drop out-of-network MH coverage altogether if they decide that offering such benefits is not in their best interest, Regier and his colleagues say. In contrast, the parity bill moving through the House would require plans to cover all mental disorders and to cover out-of-network MH treatment at the same levels as other out-of-network treatment.

Voting Rights Issues Clash with Federal Priorities as Election Heats Up

Supreme Court Hears ID Case

Just as the 2008 election shifted into high gear, the Supreme Court took up a voting rights case Wednesday that could affect the outcome in some close contests this year and well into the future.

At issue: whether states may require voters to show a state government-issued ID or passport at their polling places. Crawford v. Marion County Election Board and Indiana Democratic Party v. Rokita, which concern the constitutionality of an Indiana statute mandating that in-person voters produce government-issued photo identification. The Court considered the burden that the law places on voters and the state's justification for the law, namely that photo IDs are needed to prevent vote fraud by those who are not legal voters, such as felons, noncitizens or nonresidents. Neither the Defense nor the Prosecution have been able to produce a witness affected the new law thus far. The Supreme Court is expected to rule on this case before July.

After receiving comments and support from the membership, the NCIL Voting Rights Task Force developed NCIL's Voting Rights Guiding Principles, which oppose ID requirements that pose a barrier to voting for people with disabilities.

Homeland Security Retreats from Facets of 'Real ID'

Source: Washington Post, by Spencer S. Hsu (Excerpted)

The Bush administration is easing its demand for tough national standards for driver's licenses, acting at the behest of state officials who say the "Real ID" plan is unworkable and too costly, officials familiar with the new policy said.

…In a recent meeting, DHS policy official Richard C. Barth told state officials to expect Real ID's price tag to fall by "billions of dollars" as DHS eases previous demands that the new licenses be renewed every five years, that expensive, tamper-resistant materials be used to create the ID cards, and that each state develop its own document verification systems, those officials said.

…Timothy Sparapani, senior legislative counsel for the American Civil Liberties Union, said DHS is weakening the program in a desperate bid to keep it alive. The ACLU and conservative libertarian groups that oppose Real ID view it as a de facto national ID with Orwellian implications. Eight states have passed legislation to opt out of the program, nine others have passed resolutions in opposition, and more will consider doing so this winter.

"DHS is doing back flips in order to get states to say they are complying with Real ID," Sparapani said. "It was flawed in principle from the beginning, and DHS is attempting a 'Hail Mary' pass to try to coerce and convince states that what they are doing under existing statutes is acceptable."

…In 2005, Congress passed legislation mandating Real ID to standardize information that must be included on licenses, including a digital photograph, a signature and machine-readable features such as a bar code. Under the law, states also must verify applicants' citizenship status, check identity documents such as birth certificates, and cross-check information with other states and with Social Security, immigration and State Department databases. The new licenses must include features to thwart forgery and fraud, and drivers born after 1935 will have to present birth certificates or passports to obtain them.

…Congress approved $40 million in grants to states to cover some of the expenses this year. By comparison, the National Governors Association wants $1 billion next year as a down payment for states' start-up costs. Read this article in full.

Take Action: Tell NCIL Your Voting Experiences!

Following up on last year's voter survey, The NCIL Voting Rights Task Force is seeking feedback from people with disabilities about their experiences voting - both positive and negative. Please send your polling place experiences to Task Force Chair Kathy Hoell at khoell@cox.net or to NCIL Policy Analyst Deb Cotter at deb@ncil.org Thank you for your participation. Don't forget to check out NCIL's Vote 2008 to read Presidential Candidates' responses to NCIL questions, learn more about the candidates, register to vote and more!

House Releases 21^st Century Communications / Video Accessibility Act

On December 21^st, 2007, the U.S. House of Representatives released a draft bill, the long-awaited "Twenty-first Century Communications and Video Accessibility Act." This proposal is a dramatic and comprehensive step forward for consumers with disabilities. It proposes to amend the Communications Act - the main statute that impacts the telephone and video programming industries - to add new consumer protections that will ensure people with disabilities do not get left behind as telephones and television programming increasingly rely on digital and Internet Protocol (IP) technologies. The proposals will allow greater numbers of people with disabilities to live independently and to enjoy new electronic gadgets and devices that most takes for granted.

See the draft bill (PDF only)

See a summary of the bill (Word)

Immediate Action Steps! To help pass these simple communication fixes that will bring communications into the 21^st century for people with disabilities, please send letters as soon as possible to the following House members who are the leadership of the House Energy and Commerce Committee. Make sure to ask them for sponsorship of the legislation.

John Dingell (D-MI), Chairman, House Energy and Commerce Committee, Room 2328 Rayburn House Building, Washington, DC 20515.

Ed Markey (D-MA), Chairman, House Subcommittee on Telecommunications and the Internet, Room 2125 Rayburn House Office Building, Washington, DC 20515.

Ranking Minority Members: Joe Barton (R-TX), Room 2109 Rayburn House Building, Washington, DC 20515.

Fred Upton (R-MI), Room 2322A Rayburn House Office Building, Washington, DC 20515.

Also send letters to your own representatives if they are members of the House Subcommittee on Telecommunications and the Internet, which will review the bill first. View a list of subcommittee members and their addresses. Snail mail is preferred. Please send copies of your letters to: COAT, c/o of AAPD, 1629 K Street NW, Suite 503, Washington, DC 20006, Attn: J. Simpson.

Your letter could help make sure that there really is 21^st century electronic communication for people with disabilities! NCIL is a member of the Coalition of Organizations for Accessible Technology (COAT). COAT advocates for legislative and regulatory safeguards that will ensure full access by people with disabilities to evolving high speed broadband, wireless and other Internet protocol (IP) technologies. COAT consists of over 160 national, regional, state, and community-based organizations dedicated to making sure that as our nation migrates from legacy public switched-based telecommunications to more versatile and innovative IP-based and other communication technologies, people with disabilities will not be left behind. Check out their website. If you are interested in accessible assistive technology and want to be an active member of the NCIL AT Subcommittee, please contact John Nousaine or Elizabeth Leef.

Including People with Disabilities in Emergency Preparedness Activities

On January 3^rd, NCIL policy staff joined the Consortium for Citizens with Disabilities (CCD) Task Force on Emergency Management and the National Council on Disability (NCD), to meet with officials from the Department of Homeland Security Federal Emergency Management Agency (FEMA), including Disability Coordinator Cindy Daniel, to discuss Top Officials 4 (TOPOFF 4), the nation's fourth terrorism preparedness exercise, which was conducted the week of October 15^th, 2007 and involved top officials in federal, state, and local government, as well as representatives from the international community and the private sector - over 15,000 people! NCIL policy staff and CCD members emphasized the need for increased inclusion of, response to, and collaboration with the disability community during this exercise. NCIL Policy staff has been invited to a follow-up briefing by the Interagency Coordinating Council (ICC) and FEMA regarding the two-day policy level Long Term Recovery Tabletop Exercise held in December 2007 and the After Action Conference, to be held in January, 2008.

On January 8^th and 9^th, NCIL participated in the National Organization on Disability's Special Needs Technical Assistance Conference, addressing the emergency preparedness needs of individuals with all types of disabilities.

Individual NCIL Members interested in working on these policy issues are encouraged to join the NCIL Emergency Management Task Force by contacting Norm Smith at projectfreedom1@aol.com.

3) State News

SKIL Annual Meeting Update

Kansas

There was a large crowd in attendance for SKIL's Annual Meeting December 7^th, 2007, in Parsons, Kansas. Following dinner, Executive Director Shari Coatney presented each board member a caricature created by local artist Skip Smith, who also created a portrait of the keynote speaker Andrew Imparato, President and Chief Executive Officer of the American Association of People with Disabilities, based in Washington, D.C. In his address, Imparato spoke of political power and the need to work together, especially during this election cycle. Imparato said that one way everyone can help is to get involved with increasing voter registration and turnout, and pay attention to events even in off-election years. AAPD, the largest cross-disability membership organization in the United States, was founded in 1995 by former Kansas Senator Bob Dole and some of those instrumental in passage of the Americans with Disabilities Act. Imparato said that as people age, more attention will be paid to accessibility issues.

A number of people were recognized at SKIL's annual meeting. The John Spillman Sprit of Independence Award went to Linda Roberts, The Proving by Doing Award went to Ron Waun, The President's Youth award went to Jessica Schwartz, The Bobby Carter Planned Giving Award went to the Jock's Nitch, The Gary Cantrell Radio Excellence Award went to Lynn Meredith and the Marty Wooten Advocacy Award went to Larissa Cervantes.

"Patients in Peril 2008"

District of Columbia Protection and Advocacy released the document, "Patients in Peril 2008", which outlines serious deficiencies and "inexcusable lapses" in care at St. Elizabeth's Hospital, including the deaths of seven people with psychiatric disabilities in 2007, The Inclusion Daily Express reports. Given the highly publicized recent national push to strengthen involuntary commitment standards (such as those by the State of Virginia and the L.A. Times), advocates should use such information to inform Americans that abusive and neglectful institutions are more than a relic of an ancient past and that lowered civil rights protections for people with mental illnesses will not be negotiated, let alone tolerated while such inexcusable and barbaric conditions persist.

Interested individual NCIL members are encouraged to join NCIL's Violence and Abuse Task Force to address policy issues on violence and abuse against people with disabilities, including mental illness. If you are interested in working on this Task Force, please contact one of the co chairs: Leslie Myers or Roberta Sick. Read the Report in Full (PDF). Contact ULS for alternative formats.

Disability CIL Tackling Youth Incarceration, Seeking Input

Denver

"The Disability Center for Independent Living in Denver is working closely with Lookout Mountain Youth Services to help transition youth with mental illness / substance abuse issues who have been incarcerated for minor offenses. We are working with one program director at Lookout to develop an eight week curriculum to provide independent living skills training, WRAP training, and a course on substance abuse and HIV/AIDS. We begin working with youth while they are still incarcerated and will be providing mentors upon release: youth who have experienced what they have experienced and can act as role models of success. There are two goals of the program: help guide the youth upon release to a "constructive approach to their independence" - oftentimes the sudden responsibility of independence after being incarcerated for a year or two leads to problems and recidivism. The second goal is to create a bond with the youth while still incarcerated so that they will stay with our program for at least a year after being released. Will keep you all up-to-date on the results we achieve. Any input from NCIL members would be appreciated."

4) Announcements

MFP Rebalancing Demonstration Stakeholder Teleconference

Source: CMS

The Centers for Medicare & Medicaid Services (CMS) cordially invites you to attend a national teleconference to hear about the core components and the current status of the MFP Rebalancing Demonstration. ADAPT believes that the organization "Voice of the Retarded" will be on the call to dismantle efforts to expand MFP, and they encourage the disability community to join and reiterate the need for Money Follows the Person.

As you may know, the MFP Program is the largest demonstration ever offered by Medicaid. The MFP Program is providing States with $1.75 billion in funding to promote community-based healthcare services as viable alternatives to institutional care. It is designed to help States transition people from institutions back into the community where they can preserve their independence, maintain ties to family and friends, and enjoy a better quality of life. The details for the teleconference are as follows:

Date: Thursday, January 17, 2008

Time: 3:00 - 4:30 p.m. (EST)

Call-in Number: 1-888-793-1765

Passcode: Stakeholders

This teleconference has been specifically designed for the informational needs of consumers, their families, and advocacy groups living in or representing the specific MFP Demonstration States. Participation is limited to these key stakeholders in the MFP demonstration States. If a MFP Demonstration program is operating or is planned for your State, this teleconference will provide you with important information about the program.

We encourage you to forward this message to local and regional chapters of your advocacy organizations or stakeholder groups, operating in the MFP Demonstration States, as this is a great opportunity to hear more details about the current status and core components of the MFP Rebalancing Demonstration. After a 45 minute presentation by the CMS MFP team, the teleconference will be open for your questions and comments. No pre-registration is required.

If you have any questions, please do not hesitate to contact Cathy Cope (410-786-8287), John Sorensen (410-786-5933) or Carey Appold (410-786-2117).

TASH Webinar Series:

Working Life: Towards a Lifestyle of Employment For All

Session 1: Challenges & Opportunities in Expanding Integrated Employment
Monday, January 28, 2008

Session 2: Discovery and Profiles
Monday, February 4, 2008

Session 3: The Customized Planning Meeting & Development of a Representational Portfolio
Monday, February 11, 2008

Session 4: Interest-Based Negotiation for Customized Employment
Monday, February 25, 2008S

Times for all Webinars: 1:30pm- 3:00pm Eastern; 12:30pm - 2:00pm Central; 11:30am - 1:00pm Mountain; 10:30am - 12:00pm Pacific

Click here for further details and registration. Co-Sponsored by Institute for Community Inclusion (ICI) UMass-Boston and AP.

Last Edited By: SEANLKELLY 01/17/08 00:22:32. Edited 1 time.

SEANLKELLY

NCIL WEEKLY ADVOCACY MONITOR (WhAM) 01-22-08

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Posts: 209

01/24/08 14:02:50

Weekly Advocacy Monitor

WhAM!

Volume 6, Issue 3 January 22, 2008

1) What's Happening in the Nation's Capital? 2

2) National News 3

ADA Restoration Act Hearing January 29^th. 3

Action Alert: Ask the Senate to Stop Discriminatory Judicial Appointments! 4

Hundreds of Advocates Pack the House for CCA! 5

NCIL Urges Congress to Investigate Federal Employment of People with Disabilities. 6

New CMS Rules Will Impact Access to Independent Living. 7

National Association of the Deaf Defends Communications Accessibility. 9

3) State News 10

HANO Passes Reins of Disaster Voucher Program.. 10

Access to Independence Works to Improve Statewide ILC Network. 11

4) Announcements 11

National Disability Policy: A Progress Report 11

National ADA Symposium.. 11

2008 Accessible Technology On-line Seminars. 12

5) Additional Resources 13

Disability Rights Groups Oppose the Nomination of Gene Pratter 13

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

Source: Kaiser, CQ Daily

For the first time since mid-December, both chambers of Congress will be set for legislative action this week. Both chambers will hold hearings on early childhood education, health care options for small businesses and equal pay.

The House of Representatives is trying again to override President Bush's veto of legislation expanding the State Children's Health Insurance Program through an increase in tobacco taxes. The vote is expected on Wednesday. In other House news, the Ways and Means Committee has yet to announce hearings on an economic stimulus package, but it could weigh in as soon as next week.

Tuesday, January 29^th at 9:30 AM, the House Education and Labor Committee (full committee) will hold a hearing on ADA Restoration (H.R. 3195) in 2175 Rayburn House Office Building. (See related article below).

The Senate kicks off its 2008 legislative work this week, after holding a series of pro forma sessions over the past several weeks in an effort to block the Bush

administration from making recess appointments.

The Senate is focusing on the Indian healthcare bill, which represents the first time the Indian healthcare program has been reauthorized in more than eight years. The Senate is also set to take up a bill that would expand Medicare, Medicaid and State Children's Health Insurance Program coverage for Native Americans. Notably, the bill would require that all tribal health programs, including the Indian Health Service, Indian tribes, tribal organizations and urban Indian organizations be eligible for reimbursement under Medicare, Medicaid and SCHIP. It would free Native Americans from being responsible for cost-sharing,

premiums, enrollment fees and deductions under these programs.

Tomorrow Finance Chairman Max Baucus (D-MT) will host the first of two hearings on what should be included in a stimulus bill. Congressional Budget Office Director Peter Orszag will testify about his group's recent report "Options for Responding to Short-Term Economic Weakness." On Thursday the committee members will hear from economists Jason Furman and Martin

Feldstein on stimulus measures. Other hearings could follow.

Also, the Health, Education, Labor and Pensions Committee is set to hold a hearing on Thursday to consider the Fair Pay Restoration Act (S. 1843) which seeks to clarify civil rights laws regarding discriminatory compensation.

2) National News

ADA Restoration Act Hearing January 29^th

Action Alert: Urge Members of the Education and Labor Committee to Attend!

Next Tuesday, January 29^th at 9:30am, the full House Education and Labor Committee will hold a hearing on ADA Restoration (H.R. 3195) in 2175 Rayburn House Office Building. It is essential that we secure great attendance from the Subcommittee Members at the hearing on this crucial piece of legislation. NCIL strongly urges advocates to attend!

Please contact the following Members' offices and urge them to attend Tuesday's hearing. Tell them that restoring the Congress' original intent for the ADA is necessary to create an equal playing field for people with disabilities and improve employment outcomes. For more information, including background information and NCIL's Senate testimony, visit NCIL's ADA Restoration Action Hub.

How: Call the Subcommittee Members using the Capitol Switchboard at 1-202-224-3121 [House of Representatives Relay Service is available to receive calls for House offices at 1-202-225-1904 (TTY)].

Who: Read the list below to find members who have co-sponsored ADA Restoration. When you call the offices, remember to thank those Members who have co-sponsored and encourage them to stay involved.

House Education and Labor Committee Members:

DEMOCRATIC CO-SPONSORS: George Miller, Chairman (CA)

Dale Kildee (MI), Donald Payne (NJ), Robert Andrews (NJ), Robert Scott (VA), Lynn Woolsey (CA), Rubén Hinojosa (TX), Carolyn McCarthy (NY), Dennis Kucinich (OH), David Wu (OR), Rush Holt (NJ), Susan Davis (CA), Danny Davis (IL), Raúl Grijalva (AZ), Timothy Bishop (NY), Linda Sánchez (CA), John Sarbanes (MD), Joe Sestak (PA), Dave Loebsack (IA), Mazie Hirono (HI), Jason Altmire (PA), John Yarmuth (KY), Phil Hare (IL), Yvette Clarke (NY), Joe Courtney (CT), Carol Shea-Porter (NH)

Democratic Not-Yet-Sponsors: John Tierney (MA).

REPUBLICAN CO-SPONSORS: Howard "Buck" McKeon, Ranking Member (CA)

Thomas E. Petri (WI), Peter Hoekstra (MI), Michael Castle (DE-At Large), Mark Souder (IN), Vernon Ehlers (MI), Luis Fortuño (PR).

Republican Not-Yet-Sponsors: Judy Biggert (IL), Todd Russell Platts (PA), Ric Keller (FL) , Joe Wilson (SC), John Kline (MN) , Cathy McMorris Rodgers (WA), Kenny Marchant (TX), Tom Price (GA), Charles Boustany, Jr. (LA), Virginia Foxx (NC), John "Randy" Kuhl, Jr. (NY), Rob Bishop (UT), David Davis (TN), Timothy Walberg (MI), Dean Heller (NV).

Find Hearing Information at: http://edlabor.house.gov/. Accessible Entrance: Main entrance, horseshoe drive off South Capitol Street. Closest Metro Station: Capitol South (Orange and Blue Line Trains).

Follow up: We are keeping track of what Congressional staff members tell constituents. Please contact Deb Cotter, NCIL Policy Analyst, by email deb@ncil.org or phone (202) 207-0334, ext. 1008, to let us know what your Representative's office says. Thank you!

Action Alert: Ask the Senate to Stop Discriminatory Judicial Appointments!

Contact: Senate Judiciary Committee Members

Message: "Oppose Judge Gene Pratter to the Third Circuit Court of Appeals" and "Don't Consider Controversial Judicial Nominees During Presidential Election Year."

Rationale: NCIL is strongly opposed to the confirmation of extremist judicial nominees, which has led to the further weakening of the Americans with Disabilities Act (ADA) and other civil rights protections. We believe that none of the pending controversial judicial nominations, including Judge Gene Pratter to the Third Circuit Court of Appeals, should be acted upon.

The Senate should follow its longstanding policy that judicial nominations are not processed in a presidential election year unless they are uncontroversial. Federal courts have inappropriately rolled back many important rights of people with disabilities, and the nomination of controversial nominees who are hostile to civil rights must come to an end. Accordingly, the nominations of Judge Pratter and all other controversial nominees should not be acted upon.

Contact Information: Please voice your concerns to Senate Committee on the Judiciary Chairman Senator Patrick Leahy, Ranking Member Senator Arlen Specter, and all committee members.

Hundreds of Advocates Pack the House for CCA!

January 16th, 2008 hundreds of disability rights activists converged on the House of Representatives (Committee on Energy and Commerce) Subcommittee on Health to attend the hearing "Helping Families with Needed Care: Medicaid's Critical Role for Americans with Disabilities". Over one hundred advocates packed into the hearing room as equally many were directed to two overflow rooms! The impact of this showing on the fourteen Representatives in attendance was clear. Utter confusion turned to pleasant surprise as they witnessed the disability community uniting under the Community Choice Act. You can watch the full hearing and read prepared witness testimony at the Committee on Energy and Commerce website.

Unfortunately, the focus of the hearing was Medicaid in general and not the Community Choice Act in particular, which means that the CCA must still pass through this Sub/Committee before it moves to the full house. Witness testimonies varied widely in focus and narrative, but every witness underscored their support for the CCA!

Just as the hearing began, word spread that Barack Obama had released a statement on the Community Choice Act. His statement read,

"I support the passage of the Community Choice Act of 2007, which would allow Medicaid-eligible Americans with significant disabilities the choice of living in their community, rather than having to live in a nursing home or other institution. This legislation is vitally important to the independence, community integration, and equality of hundreds of thousands of Americans with disabilities."

Chairman Pallone (D-NJ) opened the hearing with a thoughtful summary of current legislation and its effect on Medicaid and Americans with Disabilities. He identified the CCA and CLASS Act as vital steps in the process of Medicaid reform. Representative Deal (R-GA) added that he supports the Community Choice Act as a means to ending the institutional bias. Representative Green (D-TX) spoke of the need to end the 24 month waiting period for Medicaid eligibility. Representative Capps (D-CA) underscored the tragedy of Bush Administration regulations and asked for testimony regarding the lack of a trained PCA workforce, poor wages for such a workforce, and advice on recruitment and retention. After many of the Representatives present made surprisingly positive and informed opening remarks and each witness had a chance to testify, members of the Subcommittee asked numerous questions, both on- and off-topic, clearly in an effort to figure out exactly what the crowd wanted of them. Undaunted by warnings to behave, the large orange crowd cheered unanimously in support of the Community Choice Act as witnesses each explained why the legislation is crucial to the communities they represent.

Witnesses represented the Kaiser Commission, the ARC of New Jersey, Family Voices, ResCare, Amerigroup, and ADAPT. ADAPT testified that when it comes to nursing homes, "you don't get better, you just get out." They underscored the fact that we need action in order to end the institutional bias, that it is unacceptable that people with disabilities must enter a nursing home in order to access assistance escaping one, and that the disability community is disserviced by the "disease categories" employed by CMS to assess people with disabilities and the services we need to maintain independence.

Congratulations to the hundreds of advocates who made this hearing a success with their presence. One member of the Subcommittee remarked, "Now this is how you get things done in Washington!" Although no action was taken during this hearing, advocates sent a strong message and garnered a strong base of support for the CCA and many other Medicaid-related issues that will have an impact on the disability community.

Read the press release from Committee on Energy and Commerce.

NCIL Urges Congress to Investigate Federal Employment of People with Disabilities

On January 15^th, NCIL wrote to House Oversight and Government Reform Committee Chairman Harry Waxman, urging him to conduct a hearing on the status of employment of people with disabilities in the federal government, which should include review of the Schedule A Hiring Authority. Schedule A enables managers to hire qualified applicants with disabilities expeditiously through a non-competitive process. A copy of this letter is available on the NCIL website. If you are interested in working on this and other employment and Social Security Reform policy issues, please contact NCIL Employment/Social Security Subcommittee Chair Bryon MacDonald by email at bryosemite@aol.com or by phone at 510-251-4304.

A Troublesome Decline in Disability Hiring

Source: Washington Post, by Stephen Barr

Most federal agencies are losing more employees with severe disabilities than they are hiring, and the Equal Employment Opportunity Commission wants to get the government back on path as a model employer.

An EEOC management directive, which went into effect in October 2003, requires federal agencies with more than 1,000 employees to recruit disabled individuals and set hiring goals, but 43 percent of federal agencies have not established such goals, the EEOC said in a report released Tuesday.

"This may account for why little progress is being realized," the report said.

In fiscal 2006, the government had about 2.6 million permanent and temporary workers, and 24,442 were deaf, blind, mentally retarded or had other serious disabilities.

That year, the severely disabled represented 0.94 percent of the government's workforce, the lowest rate in 20 years, according to the report.

Even the overall growth in government employment did not help the recruitment and retention of disabled employees. The government's workforce grew by 135,732 between fiscal 1997 and 2006, a 5.48 percent increase, while the number of employees with severe disabilities decreased by 4,229 during, a loss of 14.75 percent. Read the Article in Full.

New CMS Rules Will Impact Access to Independent Living

The Center for Medicare and Medicaid Services (CMS) has been busy with several new regulations. NCIL is very concerned with the final interim rule regarding transitional case management, durable medical equipment, and expansion of the cash and counseling model.

Transition Services and Money Follows the Person: The Case Management regulations that CMS has just released will reduce reimbursement for "Transition Services" from 180 days to 60 days. This will have a direct and negative effect on the implementation of Money Follows the Person projects now beginning in 31 states. For people in nursing facilities, any less than six months of Transition Services can only be reimbursed for 14 days. This will drastically affect states like Texas, Kansas, and Maryland, which have state MFP programs that allow people to transition out if they have been in a facility less than 6 months. Please write to CMS and let them know what a long and difficult process transition is, and add to your own comments on how the regulation will negatively impact people waiting to return to the community.

Deadline for comments is Feb 4th. Please let CMS know:

1) Keep Transition Services reimbursement for Case Management at 180 days;

2) Allow reimbursement to be received by community organizations for each 60 days of Transition Services provided up to 180 days.

You can email comments or write to: HHS / CMS-2237-IFC / P.O. BOX 8016 /

Baltimore, MD 21244-8016.

Durable Medical Equipment: DME has been focused on by CMS & several Congresses for abuse & fraud. One of the many issues being examined by CMS & Congress is the elimination of the purchase DME in the first month. The new provision would instead rent durable medical equipment for up to 13 months before purchasing the equipment for the consumer. NCIL sees this as a huge concern for people with disabilities who depend on durable medical equipment to live independently.

This provision would eliminate the initial purchase option for power wheelchairs. Several advocacy groups, including NCIL, oppose the elimination of this provision because it would increase obstacles for people with disabilities on Medicare trying to get medically necessary equipment.

Elimination of the first-month purchase option and the imposition of a 'rental-only' policy will have the consequence of reducing access for beneficiaries. Such a policy change would require providers to absorb the significant costs of purchasing each power wheelchair from the manufacturer and essentially financing them to individuals with disabilities over the 13-month rental period. As a result of the enormous up-front costs, providers will likely be unable to produce the needed specialized items and related services such as custom accessories including backs, seats, tilt/recline systems, and other hardware required for proper fit and use of the power wheelchairs by individuals with disabilities.

Medicare's rental program rents equipment for 13 months with durable medical equipment companies responsible for maintenance and service during this rental period and allows providers to take power wheelchairs away from patients if they enter a hospital or nursing home, when Medicare coverage for equipment ceases. Hospitalizations are not uncommon for power wheelchair users, including long rehabilitation stays. The hospital or nursing homes become responsible for providing such services, resulting in patients using manual wheelchairs or having to remain in bed. Once discharged from the hospital, the beneficiary's rental period begins anew, placing them 13 months away from a purchase option, once again.

Combining this significant policy change with other upcoming changes, including competitive bidding, new accreditation requirements, a surety bond requirement, national coverage changes, and new billing codes, will add to confusion and uncertainty and may further compromise access to appropriate mobility devices. NCIL urges you to contact your elected representative and ask them to reject this provision in order to ensure that consumers with mobility impairments have access to medically necessary mobility devices. If you have further questions, please contact Elizabeth Leef at Elizabeth@ncil.org or 202-207-0334.

Recently, CMS released another rule for comment on expanding the Cash and Counseling Model for self-directed Personal Assistance Services. Please find below an article from BNA describing the proposed rule.

CMS Endorses Cash and Counseling Model

Source: BNA

The Centers for Medicare & Medicaid Services released a proposed rule providing guidance to state Medicaid officials who want to administer self-directed personal assistance services (PAS).

Self-directed care allows Medicaid recipients needing help with the activities of daily living to select, direct, and manage their needed services under an individualized service plan and budget, according to the proposal set to be published in the Jan. 18 Federal Register. Self-directed care lets recipients retain control and authority over who provides the services, how the services are provided, the hours they work, and their rate of pay.

"This proposal would give Medicaid beneficiaries significant new freedom to determine how their personal assistance services are delivered and by whom," Kerry Weems, acting CMS administrator, said in a press statement. "As health care is not simply an economic transaction, this proposal represents a fundamental shift that restores a person's ability to improve their overall health by taking greater control of his or her own decisions."

If a state adopts a self-directed personal assistance services state plan option, beneficiaries could receive a cash allowance to hire their own workers to help with such activities as bathing, preparing meals, household chores, and other related services that help a person to live independently, CMS said. Allotments also could be used to purchase items that help foster independence such as a wheelchair ramp or microwave oven.

CMS said the proposed rule would implement Section 1915 (j) by setting forth the requirements of the self-directed PAS delivery model and defining how individuals may qualify to participate in a self-directed PAS state plan option.

Read the Press Release in Full. The proposed rule is available online (PDF format).

National Association of the Deaf Defends Communications Accessibility

The National Association of the Deaf has filed several complaints against businesses that refuse to accept calls made by individuals who are deaf or hard of hearing through a telecommunications relay service.

· Complaint filed against Washington Mutual,

·Complaint filed against law firm Peroutka & Peroutka,

·Maryland and Virginia Restaurants and,

·Complaint filed against Chase Bank.

Relay services were established by Title IV of the ADA to provide functionally equivalent telephone services. As a result, businesses did not and do not need to equip themselves with TTYs or other specialized equipment to communicate by phone with people who are deaf or hard of hearing or who have a speech disability. Instead, they can make calls and accept calls made through a relay service.

NCIL encourages members with similar experiences of businesses refusing to accept calls made through a relay service to file complaints with the U.S. Department of Justice under ADA Title III. Click here for more information about filing a complaint from the Department of Justice. If they don't hear from us, nothing will change!

3) State News

HANO Passes Reins of Disaster Voucher Program

Source: Times Picayune, by Gwen Filosa (excerpted)

Houston Agency's Expertise Cited; Improvements Promised in Switch

The Housing Authority of New Orleans has handed over the responsibility of running a post-Katrina housing voucher program to an out-of-state agency. The Harris County Housing Authority in Houston will administer the Disaster Housing Assistance Program in New Orleans. Promising vast improvements that include getting payments to landlords on time, HANO formally approved the switch Wednesday.

…The switch was made to improve the voucher delivery system, from paying landlords on time to helping families find housing, HANO officials said. Harris County runs the largest Disaster Housing Voucher Program in the nation.

The switch, though, drew skepticism from U.S. Sen. Mary Landrieu, D-La., who has become a frequent critic of HANO's efforts to reopen public housing in New Orleans.

…"It continues to be a disappointment that HANO management is not improving," Landrieu said Wednesday in a statement. "It clearly was not up to the challenge to begin with. I hope that with Harris County overseeing DHAP that all New Orleanians will get the housing help they need. Long term, however, smart plans for affordable housing should be crafted by those with roots in our community." Read Article in Full.

Read Related Story: Housing Agencies Sue to Remove Protesters.

Access to Independence Works to Improve Statewide ILC Network

Cortland, New York

Earlier today, Mary E. Ewing, Executive Director of Access to Independence, announced that her agency has been awarded a three-year, $75,000 grant from the New York State Independent Living Council (NYSILC) to continue its participation in the Statewide Systems Advocacy Network (SSAN), a grassroots advocacy network of Independent Living Centers (ILCs). Ms. Ewing also announced that the agency's long-standing Systems Advocate, Dr. Mary Beilby, retired on December 31, 2007. Ms. Ewing said that Chad W. Underwood, Coordinator for the Peer Mentoring & Model Transition Programs, took over the Systems Advocate responsibilities on January 1.

According to Mr. Underwood, the SSAN provides a forum for ILCs from across the state to work collaboratively to achieve successful outcomes on disability priority issues. The New York Association on Independent Living (NYAIL) coordinates the SSAN activities and develops a disability priority agenda each year that serves as the impetus for SSAN efforts. The 2008 NYAIL Disability Priority Agenda lists ILC funding, health care, housing, employment, education, transportation, civil rights, and election reform as top priorities. For more information, visit the NYAIL web site at www.ilny.org.

4) Announcements

National Disability Policy: A Progress Report

A report was issued on January 15^th, 2008 by the National Council on Disability (NCD). "National Disability Policy: A Progress Report" examines employment, housing, education, transportation and other federal policies that affect people with disabilities. It includes examples of continued progress, as well as the challenges that remain for citizens living with disabilities who wish to be more independent, more productive and more actively involved in their families and communities. A copy of the report is available online.

National ADA Symposium

Don't miss the most comprehensive conference available on the Americans with Disabilities Act!

May 12-14, 2008
America's Center, St. Louis, MO

The DBTAC-ADA Centers are proud to announce that Symposium attendees will have the opportunity to participate in a U.S. Access Board town meeting. The Access Board holds bi-annual town meetings in cities throughout the United States to receive feedback and recommendations on accessibility issues. This year, the Access Board will hold its town meeting in conjunction with the National ADA Symposium. The focus of the meeting will be airport access.

Representatives from the U.S. Dept. of Justice, U.S. Access Board, Equal Employment Opportunity Commission, U.S. Business Leadership Network, Job Accommodation Network, DBTAC-Great Plains ADA Centers as well as other nationally recognized presenters will be conducting sessions at the ADA Symposium. The National ADA Symposium will also feature an expanded EXPO and AT Fair. Please visit the ADA Symposium website for more information, session schedule and descriptions and on-line registration.

2008 Accessible Technology On-line Seminars

The DBTAC-Great Lakes ADA Center is sponsoring a new on-line seminar series on accessible technology in 2008. The goal of the series is to increase awareness on technology accessibility for people with disabilities. Each session will be held from 1:00 - 2:00pm Central Time.

This on-line series will utilize an internet based conferencing system. The Online Conferencing System is a fully accessible integrated data and voice medium that enables users to conduct workshops over the internet from just about any computer with a network connection and web browser. Participation is enhanced with use of a personal microphone.

The seminar series is free, but pre-registration is required. Please e-mail jpete@uic.edu to register for a session or for more information or questions.

Schedule is as follows:

February 11: State Laws Addressing Accessibility

March 3: Web Accessibility for Students with Disabilities

May 19: Accessible Computer Applications

August 11: ADA and Website Accessibility

September 29: Learning and Accessibility

5) Additional Resources

Disability Rights Groups Oppose the Nomination of Gene Pratter

ADA Watch, National Coalition for Disability Rights (NCDR), National Council for Independent Living (NCIL), Liberty Resources and the Bazelon Center for Mental Health Law oppose the nomination of Gene E.K. Pratter to the Third Circuit Court of Appeals. We are deeply troubled by certain rulings by Judge Pratter that demonstrate a dismissive attitude toward the rights of people with disabilities. In light of Judge Pratter's controversial record, her nomination should not be acted upon in an election year.

Judge Pratter, a member of the Federalist Society, has been a federal judge in the Eastern District of Pennsylvania since she was confirmed in 2004, after being nominated by President George W. Bush. During her several years on the bench, Judge Pratter has authored decisions that are of grave concern to disability rights advocates.

In Phillips v. Sheraton Society Hill,[1][1] Judge Pratter dismissed an ADA employment discrimination case brought by a man with a back injury. Judge Pratter failed to apply the federal courts' customary solicitude for the rights of litigants who are not represented by counsel, and dismissed the case on her own motion because the man's complaint did not indicate whether he had exhausted his administrative remedies (that is, whether he had first given the Equal Employment Opportunity Commission a chance to investigate his claim). Judge Pratter dismissed the case without permitting Phillips, who was unrepresented, to amend his complaint to demonstrate that he had filed a complaint with the EEOC and received a "right to sue" letter.

The Third Circuit Court of Appeals reversed, holding that dismissal was inappropriate: "We are troubled by the fact that Phillips was given no opportunity to amend the Complaint before the District Court sua sponte dismissed it. Phillips' failure as a pro se litigant to allege exhaustion does not warrant dismissal of this action with prejudice….We cannot assume from [his] pro se complaint that no right-to-sue letter exists or that he failed to exhaust his administrative remedies merely because he failed to attach a right-to-sue letter." The appeals court also noted that Phillips had filed a form complaint that did not require him to affirmatively state that he had exhausted administrative remedies. Judge Pratter's harsh ruling suggests an indifference to the financial realities faced by many people with disabilities, who may not be able to afford representation in order to challenge disability discrimination, but who may not be familiar with the procedural requirements of federal court litigation.

In Disabled in Action v. Southeastern Pennsylvania Transportation Authority,[2] [2] Judge Pratter dismissed a disability rights group's claims seeking to require the Philadelphia area transit authority to comply with the ADA by making two major subway stations accessible to people with disabilities. These stations were required to be accessible because they had undergone substantial renovations. Judge Pratter held that the plaintiff's ADA claims were barred because they were filed too late. She held that the statute of limitations began running from the time that the plaintiff and its lawyer knew that the transit authority did not plan to make the stations accessible, rather than from the time that the renovations were completed without making the stations accessible. Judge Pratter's ruling ignores the plain language of the ADA, which provides that discrimination occurs when a public transportation facility is not made accessible "upon completion" of renovations. As a result of this ruling, individuals who use wheelchairs and other individuals with mobility impairments are unable to use these stations, which are major connection points in the local transportation system. The U.S. Justice Department has filed an amicus brief supporting the plaintiff on its appeal to the Third Circuit, explaining that Judge Pratter's ruling is wrong and conflicts with the clear language of the ADA.

We are extremely concerned about the prospect of elevating a federal judge who seems to have a disparaging attitude toward important rights of individuals with disabilities. Both of these rulings demonstrate a willingness to dismiss claims to enforce critical rights of individuals with disabilities based on procedural concerns that are simply not warranted.

Moreover, we believe that none of the pending controversial judicial nominations, including Judge Pratter's, should be acted upon at this stage. The Senate should follow its longstanding policy that nominations are not processed in a presidential election year unless they are uncontroversial. Federal courts have inappropriately rolled back many important rights of people with disabilities, and the nomination of controversial nominees who are hostile to civil rights must come to an end. Accordingly, the nominations of Judge Pratter and all other controversial nominees should not be acted upon.

SEANLKELLY

NCIL WEEKLY ADVOCACY MONITOR (WhAM) 02-11-08

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Posts: 209

02/12/08 16:39:25

Weekly Advocacy Monitor

WhAM!

Volume 6, Issue 6 February 11, 2008

Editor's Note:

The NCIL offices will be closed February 18^th as staff celebrates President's Day and the next edition of the WhAM! will be released February 19^th. February 25^th NCIL offices will remain open but the majority of staff will be conducting the 2008 Disability Policy Summit in Washington, D.C. The following edition of the WhAM! will be released Monday, March 3^rd.

Correction: In last week's edition of the WhAM, we incorrectly identified Representative Howard McKeon as a Democrat from California. He is in fact a Republican.

1) What's Happening in the Nation's Capital?. 2

2) National News. 3

2009 Budget Update: President Bush Maintains 2008 IL Cuts. 3

House Passes Extension of Mental Health Parity Law.. 5

Heritage Foundation Releases Blatant Misrepresentation of ADA Restoration; Fox News Tows Line, Manipulates America's Best Intentions. 6

3) Announcements. 8

Was Your Tuesday Super? Tell NCIL about Your Voting Experience. 8

4) Additional Resources. 9

IL Funding Sample Letter and Talking Points. 9

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

Source: Kaiser, CQ Daily

Predictably, the President's $3.1 trillion budget was coolly received by the Democratic Congress when it was released last Monday, and even some Republicans were less than enthralled. Democrats blasted Bush's proposed five-year freeze in domestic discretionary spending and proposals to save billions from Medicare and Medicaid. They said the budget relied on faulty assumptions and the omission of numerous expenses - including future war funding - in order to show a balanced budget by 2012. A House Appropriations release said, "the president's budget is a dreary and irresponsible re-run of those we have seen for the past eight years - missed opportunities, misplaced priorities, and fiscal fairy tales."

Unlike last year, Democrats have no illusions about negotiating with Bush on domestic funding or somehow forcing him to accept more spending than he has proposed. Bush, with the support of most congressional Republicans, was able to use veto threats last year that forced Democrats to adhere to his limit for discretionary spending. As a consequence, there has been talk of delaying completion of this year's appropriations process until after the elections, or even into next year when a new president will be in office. Of course, if Democrats did that, Republicans would criticize the move and almost certainly try to make it an election-year issue, along with their crusade against earmarks. Bush on Friday made clear he will again take a hard line with Congress, saying he will veto any appropriations bill that exceeds the amount he requested for that bill.

Budget hearings flood the calendar this week, with the House and Senate attempting to cram in about two dozen hearings related to the 2009 budget. Agency and department heads will appear before a spate of committees to articulate their funding needs. Representatives from the departments of Defense, State, Treasury, Health and Human Services, Housing and Urban Development, the Interior, Veterans Affairs, and Transportation will each make appearances at separate hearings.

In the Senate, Federal Reserve Chairman Ben Bernanke, SEC Chairman Christopher Cox and Treasury Secretary Henry M. Paulson will appear together to testify on the state of the economy before the Senate Banking, Housing and Urban Affairs Committee. This same Committee will then vote on draft public housing legislation.

The Judiciary Committee will mark up legislation regarding "mentally ill offenders" (S 2304) and hearings on the nominations of James Randal Hall to be U.S. District Judge of Georgia, Richard H. Honaker for Wyoming, Gustavus Adolphus Puryear IV for the Middle District Tennessee, and Brian Stacy Miller for the Eastern District of Arkansas. Read important NCIL information on the pending confirmation of these radical judicial nominations!

The Health, Education, Labor and Pensions will hold a hearing on ways to address healthcare workforce issues for the future. The Finance Committee will hold a hearing on oversight of marketing and sales of private Medicare plans.

In the House, the Ways and Means Health Subcommittee will hold a hearing on Medicare provisions with CMS Administrator Kerry Weems. The Appropriations Labor-HHS-Education Subcommittee will hold a hearing on "social and economic burdens of disease, injuries and disability," and the Oversight and Government Reform Domestic Policy Subcommittee will conduct a hearing on "Medicaid's response to systemic problems linked to lack of public access."

2) National News

2009 Budget Update: President Bush Maintains 2008 IL Cuts

February 4^th President Bush sent his fiscal year 2009 Budget Request to Congress, his last such request before leaving office on January 20^th, 2009. Once again, the President's priorities are clear. His $3.1 trillion Budget Request proposes draconian cuts in health and human services programs, which would negatively affect the lives of millions of people with disabilities, children, older Americans, and low-income families while allowing billions of dollars in insurance industry subsidies to continue.

All Advocates should understand that the U.S. Constitution gives the funding power to the representative branch of government. Congress (the House of Representatives) must initiate and approve funding measures, and you can influence the funding process. NCIL stands ready to lead this charge.

Overview: Among other things, the President would:

Cut mandatory spending programs by $16 billion in 2009, $208 billion over the next five years, and $619 billion over 10 years;

Cut Medicare. In response to the arbitrary 45% cap created in the Medicare Modernization Act, the President's budget proposes legislation to reduce Medicare spending by $556 billion over the next 10 years and more than $10 trillion over the next 75 years;

Increase budget deficits and a record federal debt. This budget proposes making tax cuts to the wealthiest Americans permanent. The White House expects the deficit to reach $410 billion in 2008, just short of the record set four years ago. In fiscal year 2009, which begins on October 1^st, 2008, the budget gap is projected to be $407 billion;

Protect insurance industry profits. Once again, private insurers in Medicare will collect $150 billion over ten years in taxpayer-supported subsidies while reporting record profits due to the privatization of Medicare, and;

Privatize Social Security. The President's budget proposes spending $30 billion in FY 2009 and $647 billion over the next 10 years to create Social Security private accounts.

The Stakes are High for Independent Living Services: The Independent Living Program provides services to individuals with disabilities to maximize their independence and productivity and to help them integrate into the mainstream of American society.

State Grants Part B program awards formula grants to States to expand and improve independent living services and to support the operation of Centers for Independent Living. The President proposed funding Part B at $22.2 Million.

Centers for Independent Living Part C program makes competitive grants to support a network of consumer-controlled, nonresidential, community-based centers that provide a broad range of independent living services. The President proposed funding Part C at $73.3 Million, maintaining the 2% across-the-board FY 2008 funding cut to both Parts B and C for FY 2009. This proposed funding takes IL back to FY 2004 levels, as outlined in the funding chart below.

Funding History:

Fiscal Year

(in Millions)

2001

2002

2003

2004

2005

2006

2007

2008

2009 (proposed)

Independent Living State Grants (Part B)

$22.2

$22.1

$22.0

$22.8

$22.5

$22.6

$22.2

Centers for Independent Living (Part C)

$58.0

$62.5

$69.5

$73.5

$75.5

$74.6

74.6

$73.3

73.3

Federal Funding Feud Ensues: Ladies and Gentleman, the federal funding feud has begun and your help is needed to demand that Congress represent you and your funding priorities this time around. The House and Senate Appropriations Subcommittees will review the proposal, holding hearings and other public meetings. With the nation engaged in a prolonged war overseas and increased attention on homeland security, domestic spending remains flat funded. Given inflation, among other factors, this level funding is essentially a cut to IL funding. NCIL will need your support in garnering funding for persons with disabilities to fully integrate and participate in society. Click here for more information on the President's Budget Request for the Department of Education's Office of Special Education and Rehabilitative Services, including Independent Living.

Take Action: Tell Congress to increase funding for Independent Living, and consumer-directed services for people with disabilities! Use the sample letter and talking points included in this edition of the WhAM! under Additional Resources.

If your Representative serves on the House Labor, Health and Human Services, and Education Appropriations Subcommittee or the Senate Labor, Health and Human Services, and Education Appropriations Subcommittee, your calls and faxes will influence the outcome of the budget debate and appropriations process in the coming months. If you are affiliated with a Center for Independent Living in one of these Appropriators' Districts (either of the Subcommittees above, or the full Appropriations Committee in the House or the Senate) please contact your Senator and Representatives!

NCIL cannot stress strongly enough the importance of reaching out to these Members. Please invite your Member of Congress to visit your CIL, to show Appropriators directly the importance of the Independent Living Program by connecting constituents (voters) with the appropriations process and to put a face on the IL Program. If you would like more information about inviting your Member of Congress to tour your CIL and/or need assistance doing so, please do not hesitate to contact Deb Cotter, NCIL Policy Analyst at (202) 207-0334, ext. 1008 or Deb@ncil.org (with "Congressional Visit" in the subject line.)

House Passes Extension of Mental Health Parity Law

Source: CQ Today

The House passed legislation Thursday that would extend a mental health benefits law for another year as lawmakers prepare a broader parity measure for floor consideration. Passed by 384-23, the temporary measure would extend a 1996 law that bans health plans that offer mental health coverage from setting different lifetime or annual dollar limits for such treatment than those imposed for treatment of other illnesses.

A broader mental health parity bill sponsored by Patrick J. Kennedy, (D-RI), would expand mental health regulations and require plans offering mental health benefits to make them equal in cost and scope to any medical or surgical benefits offered. It includes provisions that would require insurance coverage of certain mental health conditions.

The 1996 law does not require insurers to offer coverage for any mental health conditions. "We want to get full parity, which means we want to get the real bill that extends full coverage of mental illnesses to all health insurance plans, just as we would expect health insurance plans to cover the rest of our body - cancer, diabetes, everything else," Kennedy said. "We shouldn't expect any less for mental illnesses."

Frank Pallone Jr. (D-NJ,) said, "In spite of the 1996 law and widespread recognition that mental illness and substance abuse are treatable illnesses, there still exist glaring inequities between health insurance coverage for mental health and that for other medical conditions. As we all know, these inequities can have dire consequences for friends, families and society in general." The bill also contains a provision to collect back taxes owed by doctors and hospitals by docking Medicare payments to them. The bill would compel Medicare's hospital and physician programs to participate in the Federal Payment Levy Program, which collects back taxes by withholding federal payments.

Heritage Foundation Releases Blatant Misrepresentation of ADA Restoration; Fox News Tows Line, Manipulates America's Best Intentions

Lies! Slander! And the worst part is, these people know what they're doing. It seems strong opposition to the Restoration Act is growing, and it looks like we're going to have a battle on par with that fought to pass the original ADA. Brace yourselves, advocates! The powers that be are against the ADA, as you will read below, and will say and do anything to advance their materialistic interests. We must do everything possible to counteract this type of blatant misrepresentation and manipulation of our voices, our people, and our civil rights. Nothing about us without us!

Heritage Foundation: Congress and The Disabled - More Harm Than Help

Source: Fox News, by James Sherk

Do you have less than perfect health? Need contact lenses or eye glasses? Under legislation before Congress, the government would consider you disabled. It sounds ridiculous. It is. But that rarely stops Congress. The proposed ADA Restoration Act has powerful supporters on Capitol Hill, including the majority leader of the House of Representatives, and it could easily become law.

The bill's stated purpose is to strengthen protections for disabled Americans provided by the Americans with Disability Act (ADA). Unfortunately it would go far beyond this goal, classifying virtually every American as disabled and weakening the protections the government provides the truly disabled.

Congress passed the Americans with Disability Act in 1990 with the noble goal of ensuring that disabled Americans could participate in public life. The Act prohibits discriminating against the disabled, and it requires employers to make reasonable accommodations for disabled workers.

Intending to help the truly handicapped, Congress defined the disabled as those with "a physical or mental impairment that substantially limits one or more major life activities." The act also exempts individuals who take corrective measures that mitigate their impairment, such as prescription lenses for a nearsighted employee.

The ADA has had mixed success. It has helped many disabled workers integrate into the workforce. Unfortunately, because it made employing disabled workers expensive and laying them off difficult, the act has discouraged businesses from hiring handicapped employees in the first place. Studies show that the well-intentioned ADA has actually reduced the number of disabled Americans with jobs.

Now many members of Congress want to expand the scope of the Americans with Disabilities Act to cover almost every American. The ADA Restoration Act would remove the phrase "that substantially limits one or more major life activities" from the legal definition of disability. Anyone with any physical or mental impairment, no matter how minor, would become legally disabled. Take your pick: Heartburn. Stress. Insomnia. Occasional shortness of breath. Headaches. Tennis elbow. Heck, the flu, for that matter. If the ADA Restoration Act becomes law the government would consider every American with imperfect health - which means almost every American - disabled.

The bill even specifies that if you aren't suffering from your impairment now, you are nonetheless disabled. It doesn't matter if you can take steps to mitigate your disability, such as taking medication to reduce your cholesterol level. Under this act, you are still disabled.

Unfortunately, this bill is more than absurd. The ADA Restoration Act would actually undermine the protections afforded to genuinely handicapped Americans.

The original Americans with Disabilities Act was designed to put qualified but disabled workers on a level playing field with everyone else. However, society doesn't have unlimited resources to accommodate everyone who wants assistance. Expanding the concept of disability to cover everyone will divert resources from those who truly need and deserve assistance.

The ADA, sensibly, only requires employers to make reasonable accommodations for disabled workers. The government doesn't require businesses to go bankrupt if they cannot accommodate the needs every disabled employee. If every worker qualifies for job reassignments to accommodate their "disability," then fewer truly disabled individuals will be able to obtain job reassignment as a reasonable accommodation.

The law would not even allow employers to give higher priority to individuals with more pressing disabilities. Instead employers would have to assign accommodations on a first-come, first-served basis, with no regard to the severity of the disabilities.

Consider a manufacturer with two positions on the assembly line where workers can perform their job while sitting down. If one employee claimed disability because of a sore knee, and another because of a sprained ankle, they could insist on those positions as reasonable accommodation to their disability. If a paraplegic then applied to work, the employer could not legally move one of those employees to a position that required standing, making room for the new applicant. Instead he would have to turn the genuinely handicapped worker away because there would no longer be any reasonable accommodation possible.

If every new hire is legally disabled, it becomes next to impossible to prove that a genuinely disabled worker was discriminated against. Any company could simply point out that it hired a different disabled worker who it also could not discriminate against.

When everyone is special, no one is. Calling all workers disabled once again tilts the playing field against those with genuine handicaps. Washington is filled with absurd ideas, but the ADA Restoration Act goes beyond absurd - to harming the very individuals it's intended to help.

James Sherk is the Bradley fellow in labor policy at The Heritage Foundation (www.heritage.org; contact Mr. Sherk and investigate his funding sources at http://www.heritage.org/about/staff/jamessherk.cfm ).

3) Announcements

Was Your Tuesday Super? Tell NCIL about Your Voting Experience

In the wake of Super Tuesday's Presidential Primaries in 22 states, there have been several news stories about voting irregularities across the country. The NCIL Voting Rights Taskforce is interested in hearing about the accessibility of your voting experience. Send your story to Deb Cotter, NCIL Policy staff by email deb@ncil.org and to Taskforce Chair Kathy Hoell at khoell@cox.net.

4) Additional Resources

IL Funding Sample Letter and Talking Points

If calling through the Capitol Switchboard, (202) 224-3121, once connected with the Representative's office, ask to speak with the staff person who handles Labor, Health and Human Services Appropriations issues and send any materials, including faxes to this staff person.

[DATE]

The Honorable [FIRST LAST NAME OF REPRESENTATIVE]

United States House of Representatives

Washington, DC 200515

Sent via Facsimile: (202) 225-[###]

Dear Representative [LAST NAME]:

I am writing to voice my concern about President Bush's proposed budgets cuts to programs that enable people with disabilities to participate fully in the American dream. For too long, programs such as the Independent Living Program have been cut or flat funded because of ill conceived budget priorities in Washington. The fact is that Independent Living services such as those provided by [NAME CENTER FOR INDEPENDENT LIVING] in [CITY, STATE] have been very effective in integrating people with disabilities in my community by promoting self sufficiency and providing skills and training that people with disabilities need to live independently.

Centers for Independent Living (CILs) are non-profit community-based entities that are funded under Title VII, Chapter 1, Part C of the Rehabilitation Act of 1973, as amended. There are 334 federally funded CILs and an additional 100 that operate solely on state and local funding. These Centers serve people with disabilities in all but five Congressional Districts.

CILs provide advocacy, information, peer counseling, and independent living skills training to people with all types of disabilities - promoting, supporting, and encouraging independent lifestyles in community-based settings, not costly nursing homes or other types of institutions. Last year, CILs prevented 28,000 people from entering nursing homes and helped nearly 2,800 people out of nursing homes into community-based settings.

Indeed, Centers for Independent Living have historically helped countless numbers of people move from such restrictive environments, saving the state and federal government millions of dollars as well as facilitating employment and tax paying opportunities. Yet, in spite of the success of the program, we find ourselves dramatically cut with each passing year. The President's Budget Request proposes to flat fund the Independent Living Program Part B (State Funded Centers) at $22.2 Million and Part C (Federally Funded CILs) at $73.3 Million maintaining the nearly 2% across-the-board cut in Fiscal Year 2008 - and further reducing IL's ability to assist people with disabilities, including veterans returning with significant disabilities such as Post Traumatic Stress Disorder (PTSD) and Traumatic Brain Injury (TBI).

A few years ago the national budget for CILs reached $75 million, while serving thousands of people with disabilities. Now we find ourselves at FY 2000 funding levels. Since 2005, our budgets have been slashed by 5% while the demand for services continues to increase.

I look forward to hearing your response. Please feel free to contact me if I can provide you with any information at [GIVE YOUR DIRECT PHONE NUMBER AND EMAIL]. Additionally, Deb Cotter, NCIL Policy Analyst is my representative in Washington; please feel free to contact her for further information by phone (202) 207-0334, ext 1008 or email deb@ncil.org.

Thank you for your consideration.

Sincerely,

[FULL NAME]

[POSTAL ADDRESS]

[PHONE]

[FAX]

[EMAIL]

SEANLKELLY

NCIL WEEKLY ADVOCACY MONITOR (WhAM) 02-19-08

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Posts: 209

02/21/08 16:33:51

Weekly Advocacy Monitor

WhAM!

Volume 6, Issue 7 February 19, 2008

1) What's Happening in the Nation's Capital?. 2

NCIL Second Annual Congressional Policy Briefing. 2

2) National News. 4

ADA Restoration Update: NCD Releases Response to Opposition. 4

Felony Charges Filed In Documented Abuse Incident 5

SSA Staff Meet with NCIL Employment and Social Security Subcommittee. 8

Hurricane Response Often Ignored Mentally Ill People. 9

Stimulus Payments: Instructions for Low-Income Workers, Recipients of Social Security and Certain Veterans' Benefits. 9

3) State News. 10

ADAPT Meets Hillary in El Paso. 10

4) Announcements. 10

Call for 2008 New Freedom Initiative Award Nominations. 10

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

NCIL Second Annual Congressional Policy Briefing

The National Council on Independent Living Board of Directors announced its 2nd Annual Congressional Policy Briefing to outline for Members of Congress NCIL's priorities and those of the broader Independent Living and Disability Rights Movement.

"Now, more than ever, is the time to focus Congress' attention on the needs of America's poorest and most disenfranchised minority - people with disabilities," said NCIL President Kelly Buckland. "Our policy priorities focus on key legislation needed to empower people with disabilities to live independently and participate fully in all aspects of society," Buckland added.

The briefing is scheduled for Tuesday, February 26, 2008 from 9:00 AM - 11:00 AM in the historic Russell Caucus Room, SR-325 in the Russell Senate Office Building at Constitution Avenue & 1st Street NE, Washington, DC 20510.

NCIL's top priority is increased federal funding for the Independent Living Program. IL funding has been cut three consecutive years, while our member Centers for Independent Living (CILs) and their State Councils labored with dwindling resources throughout the country to provide essential services to people with disabilities, enabling them to live independently and productively in their own homes and communities. Indeed, last year, CILs prevented 28,000 people from entering nursing homes, helped nearly 2,800 people out of nursing homes into community-based settings, and served another 300,000 people with disabilities with essential supports. "In 2007, we saved the country more in Medicaid funding than the entire Federal Budget contribution to our IL programs. We could do so much more, serve so many more, and save our nation so much more with appropriate investment in the IL Program," Buckland emphasized.

NCIL is also focusing on passage of the ADA Restoration Act. In recent years, a number of U.S. Supreme Court decisions have significantly reduced the protections available to people with disabilities in employment settings. With passage of the ADA, Congress clearly intended to prevent discrimination based on disability, and hundreds of Members of the U.S House of Representatives support this corrective legislation to restore their original intent. House Majority Leader Steny Hoyer (D-MD) and Former Chair of the House Judiciary Committee, Congressman Jim Sensenbrenner (R-WI), introduced this legislation in the U.S. House of Representatives and Senators Tom Harkin (D-IA) and Arlen Specter (R-PA) are moving this legislation forward in the U.S. Senate. NCIL and the broader disability community and pushing for passage of this legislation before the 110th Congress adjourns. Restoring Congress' original intent to the ADA would ensure that people with disabilities are getting the opportunity to present their cases fairly when they have experienced discrimination.

NCIL continues to focus on passage of the Community Choice Act. Senate Finance Committee Chair Max Baucus has asked the Congressional Budget Office (CBO) to indicate the funding necessary to implement this legislation. Regrettably, the federal government continues to fund services in institutional settings, but refuses to mandate these same services in home and community-based settings. This institutional bias forces many people with disabilities to reside in an institution in order to receive supports they need to survive.

NCIL recently adopted a position paper entitled "Being American: the Way Out of Poverty" as an alternative to the current Social Security programs, including Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI), which freeze many Americans with disabilities in poverty by forcing them to choose the disability rolls for fear of losing healthcare and a meager monthly check. "Our approach would enable people with disabilities to choose employment by providing necessary supports. It would also provide hiring incentives for skeptical employers. Doesn't it make more sense to invest in human productivity than human poverty," queried John Lancaster, NCIL's Executive Director.

"The core IL philosophy, to which NCIL and our members subscribe, is support for consumer-directed, community-based services," said NCIL Vice-President Dan Kessler of Alabama. "Equal opportunity, a base line of essential community-based services, and economic empowerment will give choices to all people with disabilities which allow them to be active contributors to the prosperity of their communities."

The National Council on Independent Living (NCIL) is America's oldest cross-disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents over 700 members, including individuals with disabilities, Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States.

The four core services provided by all federally funded Centers for Independent Living are peer-to-peer support, information and referral, independent living skills training, and systems and individual advocacy. With additional funding, CILs can serve more disenfranchised people with disabilities, enabling them to get the services they need to be empowered contributors to their communities, employers and families.

Take Action: Urge Your Members of Congress and their Staff to Attend NCIL's 2nd Annual Congressional Policy Briefing

We need your help getting Members of Congress and their staff representatives to attend the 2008 NCIL Annual Congressional Policy Briefing. Please contact your Senators and Representative and urge them to attend the Policy Briefing to learn about Independent Living and NCIL's 2008 Legislative and Advocacy Policy Priorities. Call the Capitol Switchboard at (202) 224-3121 or visit www.congress.gov to reach your Members of Congress today! NCIL will be releasing an official version of the above press release in the near future. We ask that you forward it to your local media outlets.

2) National News

ADA Restoration Update: NCD Releases Response to Opposition

On Thursday, February 14th NCIL policy staff participated in a meeting with other disability advocates and about 20 veterans service organization (VSOs) hosted by House Majority Leader Steny Hoyer (D-MD) to thank VSOs for their advocacy efforts to enact the Americans with Disabilities Act of 1990 and urge them to renew their support of the ADA by participating in the national disability rights movement's efforts to enact the ADA Restoration Act of 2007, H.R. 3195 and S. 1881, legislation needed to reverse court decisions that have left most workers with disabilities without any on-the-job protections against discrimination.

On February 14th, the National Council on Disability (NCD) responded to recent arguments made in opposition to the ADA Restoration Act, currently under consideration in Congress. It responds to statements that NCD considers to be inaccurate representations of the impact of this proposed legislation, and does so by utilizing facts that are based on three years of NCD's extensive research on the need for this restoration of the definition of disability in the ADA.

The National Council on Disability (NCD) recommended, and remains in strong support of, the restoration of the definition of disability in the Americans with Disabilities Act (ADA). The Congressional intent of this landmark civil rights legislation was to prevent discrimination against individuals with disabilities in all aspects of society, including employment. Instead, because of a number of Supreme Court decisions, many people with disabilities have experienced discrimination and have been denied ADA protections. Much of society has lost sight of the ADA's overall purpose to establish a clear and comprehensive prohibition of discrimination on the basis of disability. NCD prepared this fact sheet in response to many recent misinterpretations and false claims about the ADA Restoration Act.

Advocates should take time to review NCD's ADA Restoration Fact Sheet so that we can familiarize ourselves with our opponents' arguments and counteract their negative propaganda!

Take Action: Tell Congress to Cosponsor and Pass the ADA Restoration Act! We are facing major challenges garnering support from some Members of Congress. Your help is needed to urge Representatives to co-sponsor and support the ADA Restoration Act, legislation that enables people with disabilities to fight employment discrimination.

Find your Representative's contact information at www.house.gov or call the Capitol Switchboard at (202) 224-3121 and urge him or her to co-sponsor the ADA Restoration Act of 2007, H.R. 3195! Your phone calls and faxes are urgently needed to convince these key members to co-sponsor the bill! Background information and talking points are available on the NCIL website.

Once you have contacted your Representative, please contact Deb Cotter, Policy Analyst, at deb@ncil.org (please put "ADA Restoration Advocate" in the subject line) or call (202) 207-0334, ext. 1008, and let her know the response you received. We are keeping track of co-sponsors and need to know what Congressional staffers are telling their constituents. Thank you!

Felony Charges Filed In Documented Abuse Incident

The National Council on Independent Living was outraged by a recent video distributed nationally of a police officer violently abusing a wheelchair-user in Hillsborough County, Florida. Thanks to a quick and intense response from several local Centers for Independent Living, attention has been brought to the issue nationally and employees are currently under investigation. Doug Towne of Caring and Sharing Center for Independent Living was interviewed by the media and remained in contact with authorities, who have assured them that they are taking the incident seriously. Please find below a message from Joseph DiDomenico, Executive Director of Self Reliance Center for Independent Living, as well as an article regarding the current situation from the Center for Independent Living of South Florida.

NCIL Members,

I want to thank John Lancaster and NCIL for the opportunity to comment on the horrible incident which occurred in Hillsborough County, Florida (Tampa) regarding the abuse and treatment of a disabled citizen with quadriplegia. We are as astonished as all disability advocates throughout this nation who viewed this incredible video of mistreatment and disregard for the human rights of a citizen of this country. What you all have viewed is inexcusable for any person, disability or not.

Self Reliance, Center for Independent Living has been deeply involved in media attention in regards to advocating for the rights of Persons with Disabilities regarding this situation. We firmly believe that an atrocious action and offense has taken place. We firmly believe and have attested that there is tremendous need for education on disabilities and training on sensitivity must take place. Although we are stunned by what has occurred, we are not surprised, due to the tremendous lack of knowledge and understanding of disability issues by not only law enforcement but the general public as well.

You all will read much in the media about this incident. We also want the disability community to know that the Hillsborough County Sheriff, Davis Gee has publicly recognized his "personal embarrassment and shock by the horrific treatment" of the individual. He has offered a personal apology and stated he will not even try to offer an explanation because he knows that what occurred is against policy, practices and standards for the department. The Governor of this State has also described this incident as "terribly disturbing". The sheriff immediately suspended the deputy and all supervisors involved directly or indirectly with this incident. The vast majority the sheriff's department would never condone nor be involved in such action.

This County and City have had the wisdom to appoint ADA coordinators with whom the CIL works closely on all disability issues. The County and City has sought input and has included and valued the CIL on many issues including affordable housing, construction and re-construction of public buildings, parks and roadways, public transportation, and emergency operations to name a few. We have always worked in partnership with our community. We are a fortunate community that has experienced a horrific and inexcusable incident involving a citizen with a disability and we will strive to work within our community to resolve and correct deficiencies.

The CIL asks the disability community to express their great horror and dismay about this incident but allow the investigative process to proceed. The Sheriffs department has done the right thing with initiating the investigation and also expressed the same horror that we have expressed.

Rightfully so, there have been complaints to the Florida and U.S. Attorney Generals offices. At this point the evidence should lead to the right decision.

We will continue to strongly advocate for this man's rights and the rights of all persons with disabilities. I thank all for their national support and ask all to allow the investigative process to take place.

As I was completing this statement breaking news on Friday night reports that the deputy will face a felony charge of abuse of a disabled person. A warrant has been issued for her arrest.

Joseph J. DiDomenico

Executive Director, Self Reliance, Center for Independent Living

Felony Charges Filed In Hillsborough Incident

Source: Center for Independent Living of South Florida Advocacy Blog

February 15, 2008

Tampa, Florida - A veteran detention deputy videotaped dumping a paralyzed inmate from his wheelchair onto a jail floor will be arrested as a result of her actions, authorities said late Friday. Hillsborough County Sheriff David Gee said an arrest warrant for Charlette Marshall-Jones, 44, had been issued for a single count of felony abuse on a disabled person.

"That's exactly the charge we've been requesting,'" said John Trevena, a Largo attorney representing the paralyzed man. The incident gained national prominence after a surveillance video surfaced this week of Marshall-Jones tipping Brian Sterner from his wheelchair during booking at Tampa's Orient Road Jail. Gee called it a "disgrace" Friday night.

Three jail supervisors remain on suspension for failing to act during or after the incident. Sgt. Gary Hinson, 51, Cpl. Steven Dickey, 45 and Cpl. Decondra Williams, 36 will remain on administrative leave until an investigation of their actions is concluded, Gee said. He said Marshall-Jones is aware of the warrant for her arrest, but has not yet turned herself in. If convicted, she could face up to five years in prison. She could not be reached by phone for comment Friday night. A telephone number listed in her name has been disconnected, and Gee said his agency did not know her whereabouts Friday night. It was not clear if she had an attorney.

Sterner, 32, was arrested January 29 on a warrant for a traffic violation. He has said that Marshall-Jones grew agitated when she told him to stand up and he didn't. Sterner is paralyzed. He has partial movement in his arms, but is unable to use his legs. The video shows Marshall-Jones dumping Sterner onto the floor shortly after he was wheeled into the jail's booking area.

The callous treatment disturbed Gee, who said the incident brought notoriety to his department for all the wrong reasons. "I too was outraged at what happened," Gee said, adding that after days of investigation, he could still not explain Marshall-Jones' actions. "There could be no rational explanation." Gee said he would cooperate with any other investigations of the incident.

Florida Attorney General Bill McCollum announced Thursday that his office planned to review the case. Trevena said he doubts he will have to file a civil suit because of Gee's swift response. "I don't think that'll be necessary," he said Friday night. He said he will negotiate with the Sheriff's office to compensate Sterner for any damages.

If you are interested in making a difference on issues surrounding violence and abuse of people with disabilities, join the NCIL Taskforce on Violence and Abuse, chaired by Leslie Myers (lmyers@independencefirst.org), which meets the first Thursday of each month at 2:00 pm EST. The committee staff is Deb Cotter.

SSA Staff Meet with NCIL Employment and Social Security Subcommittee

On Feb 15th, staff from the Social Security Administration (SSA) joined the NCIL Employment and Social Security Subcommittee conference call to discuss the status of regulations to implement the Ticket to Work Act of 1999.

(SSA Press Release) The Social Security Administration enthusiastically anticipates major changes to its Ticket to Work Program this spring by offering expanded and innovative strategies to assist beneficiaries with disabilities who want to work. Social Security is re-launching the Ticket to Work Program to include a significant increase of its service offerings and targeted outreach strategies to increase the number of beneficiaries participating in the program and the number of Employment Networks that are available to serve them.

When the Ticket to Work and Work Incentives Improvement Act was enacted in 1999, Congress envisioned that initial implementation would generate valuable lessons that could be used to refine and improve the program. The Ticket to Work Program created innovative approaches to delivering employment services, vocational rehabilitation services, and other support services to individuals, some of which had never been tried before. Based on this "research in action" a new round of program enhancements are on the way.

"We believe that people with disabilities have great potential for employment. We are doing more to make the circumstances right so that they have the chance." Sue Suter, Associate Commissioner for Employment Support Programs, SSA [End Press Release].

On Feb 11, the SSA Commissioner's Office sent the final regulations to the Office of Management and Budget (OMB) for review. SSA staff are scheduled to brief OMB on substantive changes from the August 2007 Notice of Proposed Rulemaking (NPRM). OMB has up to 90 days to process and approve the regulations, however, SSA plans to request expedited processing. Once OMB releases these final regulations, publishing them in the Federal Register, they are required to go into effect within 60 days of publication. SSA is already preparing to implement the proposed changes in the regulations. For more information about the program, visit the Ticket to Work website. NCIL is currently surveying our membership to better understand your experiences with the Ticket to Work program in your area. Responses are greatly appreciated and are due by February 25^th. Please contact Deb Cotter for a copy of the survey.

Hurricane Response Often Ignored Mentally Ill People

Source: Psychiatric News, by Aaron Levin [excerpted]

…Persons with psychiatric disabilities must receive the same help as other people when disasters strike and should be included in every stage of emergency planning, according to a report from the National Council on Disability, a federal advisory group.

…"People with disabilities were segregated from the general population in some shelters, while other shelters simply refused to let them enter," according to the report. Even before they reached shelters, some persons with psychiatric disabilities ran into problems. Residents of group homes or other psychiatric facilities were lost to emergency officials, who were unprepared for the special requirements needed to transport or relocate them. Some ended up in state parks or other refuges that were not set up to meet the needs of persons with psychiatric diagnoses. Still others were inappropriately institutionalized because they were stereotyped with the stigma of mental illness.

…Untrained FEMA representatives often denied housing to persons with psychiatric disabilities after incorrectly assessing their disabilities. FEMA or the Stafford Act may cover short-term mental health services but were not designed for people who might remain displaced for months or years. "FEMA mental health resources were designed only for 'normal reactions to abnormal situations,' but not for people with serious mental illnesses separated from their own services," said Honberg.

…Federal agencies such as the departments of Homeland Security (the parent of FEMA) and Health and Human Services should adopt policies and regulations that reflect the requirements of the Americans with Disabilities Act and Section 504 of the Rehabilitation Act to provide relief services that don't discriminate against those with mental illness… Thus far, many localities have been incorporating similar recommendations for handling people with disabilities, but not many have yet included people with psychiatric disabilities, said Carroll.

Read the article in full. View NCD's "The Needs of People With Psychiatric Disabilities During and After Hurricanes Katrina and Rita".

Stimulus Payments: Instructions for Low-Income Workers, Recipients of Social Security and Certain Veterans' Benefits

The IRS has created a page on their website dedicated to addressing questions about promised rebate checks included in the President's new Economic Stimulus Package, which includes information for Social Security beneficiaries. The information claims that "the stimulus payments will not count toward or negatively impact any other income-based government benefits, such as Social Security benefits, food stamps and other programs" and that in order to qualify an individual must have at least $3,000.00 of qualifying income. Qualifying income includes Title II benefits, but does not include SSI. Follow this link to be directed to the page containing general information on the rebate plan. Or, click here to be taken directly to the page containing information specifically for Social Security beneficiaries, low-income workers, and "certain veterans".

3) State News

ADAPT Meets Hillary in El Paso

Twelve ADAPT members attended a rally for Presidential candidate Hillary Clinton in El Paso, Texas equipped with posters, despite significant accessibility issues at the venue. Seated directly behind the VIP section of the audience, ADAPTers flyered all six rows and gave advisories to the press before security deemed the information "Material unauthorized by university officials" and confiscated the documents.

Four thousand people attended the event in El Paso and U.S. Congressman Silvestre Reyes introduced Senator Clinton. She spoke of her healthcare plan but long term care reform and the Community Choice Act were not mentioned. After her rousing speech, she mingled on the stadium floor and the group managed to deliver flyers and mention the Community Choice Act. State Senator Shapleigh guided them to meet Clinton who read their T-shirts and remarked, "Community Choice, we have to work on that." One member addressed her as Madam President and she said that she "liked the sound of that," while autographing a personalized campaign poster. Senator Clinton and local politicians heard people with disabilities talking about the Community Choice Act and long term care reform, making the effort a huge success and reaching the intended targets. Said one ADAPTer, "Our troop's experiential training paid off, in knowledge of ways to penetrate the target and reach the people we need. Si se puede! FREE OUR PEOPLE!"

4) Announcements

Call for 2008 New Freedom Initiative Award Nominations

U.S. Secretary of Labor Elaine L. Chao has called upon nonprofit organizations, small businesses, corporations and individuals that have demonstrated exemplary and innovative efforts in advancing the employment and workplace environment of people with disabilities to submit entries for the 2008 Secretary of Labor's New Freedom Initiative Award. The annual award recognizes public-private partnerships and programs that have had a positive impact on the employment of people with disabilities through access to assistive technologies, the use of innovative training, and hiring and retention techniques. It also recognizes organizations, businesses and individuals that develop comprehensive strategies to enhance the ability of Americans with disabilities to enter and advance within the workforce of the 21st century. Additional information on the award and specific nomination criteria are available in the Jan. 29, 2008, edition of the Federal Register and at www.dol.gov/odep. Questions may be addressed to the Labor Department's Office of Disability Employment Policy (ODEP), Division of Policy Communication and Outreach, at 202-693-7880. The deadline for receipt of nominations is May 30, 2008.

SEANLKELLY

NCIL WEEKLY ADVOCACY MONITOR (WhAM) 03-03-08

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Posts: 209

03/04/08 20:14:00

Weekly Advocacy Monitor

WhAM!

Volume 6, Issue 8 March 03, 2008

1) What's Happening in the Nation's Capital?. 2

2) National News. 3

NCIL Disability Summit and Congressional Briefing Update. 3

NCIL Leaders Engage CMS Directly on Targeted Case Management, Etc. 4

Leavitt Says HHS Will Not Withdraw Controversial Case
Management Rule. 5

Disability Claims Backlog Will Last Five Years [Minimum] 6

Obey Claims Congress Will Wait for Next Administration if Bush
Officials Refuse To Compromise on HHS Funding. 6

3) State News. 7

AFGE, Women's and Fair Practices Survey for Workers with Disabilities. 7

State Ordered to "Help Disabled": Federal Judge Gives Health Cabinet a Week to Make Changes; Receives Federal Approval for New Waiver 7

OIG Finds Continued Lack of Supplier Compliance with Requirements. 8

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

The House and Senate Budget Committees plan to mark up their 2009 budget resolutions this week. Democrats criticized Bush's budget for failing to assume any war costs beyond 2009, and for counting increased future revenues that would occur if more taxpayers are allowed to be hit by higher taxes under the alternative minimum tax. Yet Democrats will likely use similar assumptions to bolster their budget. To achieve a surplus in 2012, Bush also assumed that domestic discretionary spending would freeze in the future and that substantial savings would be carved from mandatory programs, particularly Medicare. Democrats won't go along with those proposals, but will assume that many of Bush's tax cuts expire or are offset by other revenue-raisers, generating substantial revenue in the last couple years of the budget's five-year budget window. Work on the budget will spark another fiery debate over Bush's tax cuts - specifically, whether they should be extended or allowed to expire.

House Science and Technology Investigations and Oversight Subcommittee will finally hold a hearing on FEMA and toxic trailer homes, an issue NCIL has been pursuing for some time (1:00pm Wednesday, 2318 Rayburn).

The Senate Judiciary will mark up legislation on "mentally ill offender treatment" (S 2304), and will vote on the nominations of:

Brian Stacy Miller to be U.S. District judge for the Eastern District of Arkansas

James Randal Hall to be U.S. district judge for the Southern District of Georgia

William Joseph Hawe to be U.S. Marshal for the Western District of Washington

John A. Mendez to be U.S. District judge for the Eastern District of California, and

Stanley Thomas Anderson to be U.S. District judge for the Western District of Tennessee (10:00am Thursday, 226 Dirksen).

The issue of accepting these controversial judicial nominations in an election year is extremely important to NCIL. Click here to review the NCIL position on these nominations and join the grassroots movement to protect our civil rights!

2) National News

NCIL Disability Summit and Congressional Briefing Update

On February 25^th, NCIL held its first-ever Disability Summit. Thirteen national organizations joined the Board of Directors to review NCIL's Spring 2008 Policy Priorities and identify areas in which we can collaborate to effect positive change. Transportation and housing were areas where the participating organizations shared similar goals and were very willing to collaborate and share best practices and innovative ideas. Other issues discussed included ADA Restoration and civil rights, healthcare and The Community Choice Act, Independent Living and Reauthorization of theRehabilitation Act.

NCIL Board presents the Policy Priorities

Discussion grew lively around the issues of consumer control, disability-friendly language, and the nature of a truly cross-disability grassroots organization. Although we did not agree on all of these issues, NCIL remains committed to our principles and those of our membership. Although we endeavor to pursue and increase collaboration, we also remain steadfast and committed to never compromise our values. The principles of consumer control, independent living philosophy, and grassroots political power remain the core of our organization.

Board and particpants gather in the historic Russell Caucus Room

The Summit was preceded by an extremely productive NCIL Board Meeting, several Hill visits, and meetings between NCIL leadership and CMS; as well as transportation stakeholders.

These events were followed by NCIL's 2^nd Annual Congressional Briefing, an opportunity for members of the House and Senate, as well as their staff, to be introduced to the 2008 Policy Priories set by our membership. The NCIL Board of Directors led the presentation, explaining NCIL, the Independent Living Program, and each of our priority issues and corresponding legislation. The audience of nearly 50 people listened intently and the majority stayed long after the presentation to meet with NCIL Board members, staff, and other stakeholders and advocates from the disability community.

Participants speak with staff and Board members after the Briefing

Last week's events were a milestone for NCIL and we would like to thank those that participated. Our first Disability Summit was a sincere effort to promote areas of collaboration and we look forward to pursuing this effort further with all organizations and advocates working to secure the civil and human rights of Americans with disabilities.

NCIL Leaders Engage CMS Directly on Targeted Case Management, Etc.

February 25^th NCIL members went to the U.S. Department of Health and Human Services, where the Centers for Medicare & Medicaid Services (CMS) is housed, to discuss three issues: new Targeted Case Management rules, changes to Durable Medical Equipment (DME) availability, and Money Follows the Person (MFP) demonstration grants and Centers for Independent Living.

The NCIL PAS Committee called for a meeting with the CMS Administrator for NCIL Representatives attending the winter NCIL Board Meeting, Disability Summit, and Congressional Briefing the week of February 23-26 in Washington DC.

Jeff Hughes (NCIL Rehab Act Subcommittee Chair from Oklahoma), Tim Sheehan (NCIL Regional Representative Chair from Wisconsin), Billy Altom (Executive Director of APRIL and NCIL Member-At-Large), and NCIL Policy Analyst Elizabeth Leef met with:

Kerry Weems, Administrator of the Centers for Medicare & Medicaid Services (CMS)

Dennis Smith, Director of the Centers for Medicaid and State Operations (CMSO)

Gale Arden, Director of the Disabled and Elderly Health Plan Group within CMSO

Laurence Wilson, Director of the Chronic Care Policy Group in the Center for Medicare Management (CMM)

Robin King, Director, Office of External Affairs (OEA)

Mary Worstell, Director, Partner Relations Group (PRG) in OEA

Tracy Self, Director, Division of Partnership Relations in PRG, and assorted CMS staffers.

Regarding Targeted Case Management, Dennis Smith asked NCIL for real time information on transitioning people from institutions to the community. The new rules cut the number of days that can be reimbursed for work completed to transition an individual from an institution to the community from 180 to 60 days, seriously compromising the work of Centers for Independent Living. NCIL explained how unrealistic the new time frame was considering constraints around transition, including the costs of upfront money for rent, utilities (especially when there is no credit history), transportation (major problem in rural areas), the lengthy wait for Section 8 vouchers and accessible, affordable, integrated housing, as well as follow-up services. Dennis Smith said he was willing to revisit TCM spending or explore new ways to identify and fund those services under a different or new category other than TCM if we could show how much time, effort and money it takes to serve consumers who want to transition out of institutions. NCIL told Mr. Smith that we stand ready to work with CMS.

NCIL reported that Money Follows the Person (MFP) is working in some states, such as Kansas, while other states, such as Oklahoma, are ignoring the state plans they developed. CMS does not have the ability to follow up on approved plans to make sure states are fully implementing the approved plan.

Kerry Weems asked NCIL to help CMS investigate suppliers not living up to expectations by monitoring the 10 cities where CMS demonstration sites will go live in July 2008, then prepare for the additional 70 demonstration sited that will launch in 2009. NCIL was told competitive bidding will not affect vendors in rural areas. Administrator Weems suggested calling 1-800-Medicare to file complaints, as this creates a pathway to the regional offices. Every time someone calls 1-800-Medicare, the CMS Ombudsman tracks the phone calls by issue and gets a sense of where specific problem areas are. If the call center doesn't respond, CMS can track the date, time, location, and usually the operator, to see where training is lacking and attempt to improve the situation. The conversation flow was friendly and discussions will continue. NCIL will be contacting CMS to continue dialog on Targeted Case Management and Durable Medical Equipment. Please see the article below for updates on the growing movement to stop Targeted Case Management rules from taking effect.

Leavitt Says HHS Will Not Withdraw Controversial Case Management Rule

Source: BNA, by Steve Teske

Health and Human Services Secretary Michael O. Leavitt February 27^th indicated he has no intention of withdrawing a controversial Medicaid rule governing targeted case management, saying the rule will prevent states from financially gaming the program.

In testimony before the House Budget Committee on the Bush administration's fiscal year 2009 budget blueprint, Leavitt said states are using "fee-based contingency consultants" to get more Medicaid money via targeted case management services. The consultants are paid to increase Medicaid reimbursement, Leavitt told the committee, a practice that he said HHS is determined to stop.

'I Have to Push Back.': "We believe states are using ambiguities to unfairly increase" their share of Medicaid funding, Leavitt said in response to a question from Representative Lloyd Doggett (D-TX). The consultants "have no incentive but to push, push, push, push" for more funding, he added. "If I'm running a program of integrity, I have to push back." Read this article in full.

Disability Claims Backlog Will Last Five Years [Minimum]

Source: Congressional Quarterly Budget Tracker

A Social Security Administration official Thursday said the agency has about 750,000 disability case appeals pending before administrative law judges, about twice as many as 10 years ago - due partly to budget cuts in previous years.

Social Security Commissioner Michael Astrue told House appropriators that the backlog should drop to 683,000 cases by the end of fiscal 2008, thanks to a budget increase Congress provided this year. The agency will still be unable to process a claim faster than nine months, on average, before 2013, he said at a House Labor-HHS-Education Appropriations hearing. People seeking disability payments wait, on average, more than 500 days for their claims to be resolved. Many become sicker, lose their homes or even die while waiting, according to advocates. The situation has angered many lawmakers, though Congress's cuts to Social Security's administrative account over the years helped create the problem.

House Appropriations Chairman Obey noted that Astrue independently requested $76 million more from Congress in fiscal 2009 than President Bush had sought for the agency. Astrue said the difference was caused in part by differences in SSA and OMB cost estimates, and the true difference was more like $20 million, which he called "marginal." Astrue last year was sworn in for a six-year term that expires January, 2013. Obey also chairs the Labor-HHS-Education subcommittee. Read the Social Security Inspector General's Testimony.

Obey Claims Congress Will Wait for Next Administration if Bush Officials Refuse To Compromise on HHS Funding

Source: Kaiser

Congress will wait until next year to pass the fiscal year 2009 Labor-HHS-Education appropriations bill in the event that the Bush administration does not agree to negotiate on the legislation, House Appropriations Committee Chair David Obey (D-WI) told HHS Secretary Mike Leavitt during a Labor, HHS, Education and Related Agencies Subcommittee hearing on Wednesday, CongressDaily reports. During his opening remarks, Obey said, "It would be good if we could work things out because, if we don't, the administration will simply be

a bystander".

Obey said that he would prefer to negotiate with administration officials to pass the bill this year. However, he added, "If they refuse to sit down with us, then the president has taken himself out of the game, and we'll wait for an adult." In addition, Obey said, "This can be a wasted eight months, or we can get something done." Last year, "the president refused to compromise -- his way or no way -- and the year was wasted," he said, adding, "This year we can wait until we have another president". Obey said that he expects the next president "will be flexible".

In response, Leavitt said that he and the administration "look forward to working with Congress, states and all our other partners to carry out the initiatives President Bush is proposing." During his testimony, "Leavitt stuck to his position that he was at the hearing to defend the president's blueprint, not negotiate it" (CongressDaily).

3) State News

AFGE, Women's and Fair Practices Survey for Workers with Disabilities

Washington, D.C.

NVP for Women and Fair Practices is taking the challenge to hold the federal and D.C. governments accountable for their treatment of employees with disabilities and their failure to remove barriers to equal employment opportunities. Please help us evaluate their treatment of workers and right these wrongs!

If you would like to help, please complete this survey and contact your District Women's and Fair Practices' Coordinators or the Women's and Fair Practices Departments' staff.

State Ordered to "Help Disabled": Federal Judge Gives Health Cabinet a Week to Make Changes; Receives Federal Approval for New Waiver

Source: Lexington Herald Leader, by Sarah Vos

Kentucky

A federal judge has given the state one week to begin implementing sweeping changes to the state's community-based services for people with mental retardation and physical disabilities. The deadline means the Cabinet for Health and Family Services will have to allocate more money to the programs, said Marsha Hockensmith, assistant director of Kentucky Protection and Advocacy. Read article in full.

Kentucky Medicaid Receives Federal Approval for New Waiver (Source: Kentucky Cabinet for Health and Human Services). Kentucky's Medicaid program has received approval from the Centers for Medicare and Medicaid Services (CMS) to start a new waiver program to better serve individuals with acquired brain injuries in community settings. In his proposed budget, Governor Steve Beshear included funding of $6.5 million in fiscal year 2009 to serve 50 individuals and $18.7 million in fiscal year 2010 to serve 150 additional individuals. These funds would cover the state's share of the new program.

The waiver will serve Kentucky residents age 18 and older with acquired brain injuries (ABI). It provides an alternative to institutional care for individuals who have reached a plateau in their rehabilitation level, and require maintenance services to avoid institutionalization and live safely in the community. Read this article in full.

OIG Finds Continued Lack of Supplier Compliance with Requirements
California, [Source: Office of the Inspector General, excerpted]

Inspector General Daniel R. Levinson announced today that the Office of Inspector General (OIG) for the Department of Health and Human Services issued another report on durable medical equipment, prosthetics, orthotics, and supply (DMEPOS) suppliers' compliance with Medicare requirements. The report, "Los Angeles County Suppliers' Compliance with Medicare Standards: Results from Unannounced Visits," found that problems persist.

OIG inspected 905 suppliers to assess their compliance with certain Medicare standards. Although these suppliers must comply with more than 20 standards encompassing numerous requirements, OIG focused on four easily observed rules requiring that each supplier: (1) maintain a physical facility, (2) be accessible during reasonable business hours, (3) have a visible sign, and (4) post hours of operation.

OIG found that 115 of 905 suppliers (13 percent) did not maintain a physical facility or were not open during unannounced site visits. Another 79 suppliers (9 percent) were open but did not meet at least one of the two additional requirements for the standards we reviewed. Finally, we found that an additional 124 suppliers (14 percent) met the requirements for the standards we reviewed, but their claims had in common an atypical characteristic.

Click here for the full release (including photos of supply companies not accessible at their addresses on file) (PDF only).

SEANLKELLY

NCIL WEEKLY ADVOCACY MONITOR (WhAM) 03-10-08

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Posts: 209

03/12/08 23:02:43

Weekly Advocacy Monitor

WhAM!

Volume 6, Issue 9 March 10, 2008

1) What's Happening in the Nation's Capital?. 2

2) National News. 3

House Passes Parity Bill: Clock Running Out for Final Passage. 4

NCIL and AAPD Convene Advocates to Increase Federal Employment of People with Disabilities 5

NCIL Veterans Committee 2008 Survey Results. 5

Four States Ask Court to Overturn Limits on Payments for Case Management 6

3) State News. 8

Bredesen Releases Details on Home-based Care Plan. 8

4) Announcements. 8

Feel the Power of the Disability Vote! Presidential Candidate Forum.. 8

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

Source: CQ, CQ Budget Tracker

Both chambers this week consider their fiscal 2009 budget resolutions. The highest drama will occur in the Senate, where Democrats have the narrowest of majorities. Unlike in the House, Republicans will be able to offer dozens of amendments on narrow policy issues, and will try to paint Democrats as fiscally reckless "tax and spenders." Many GOP amendments will likely be aimed at forcing Democratic presidential candidates Hillary Rodham Clinton and Barack Obama to make difficult political choices that Republicans can use to their advantage this election year. Both are expected to be in town for key budget votes, as is GOP presidential candidate John McCain.

The budgets reported last week by House and Senate Committees both call for more domestic spending than President Bush's proposal, and would achieve budget surpluses in fiscal 2012 and 2013. Although Bush's budget achieves balance in 2012 by freezing domestic discretionary spending and requiring savings from mandatory programs, especially Medicare, Democrats assume Bush's tax cuts would expire as scheduled at the end of 2010, bringing in substantial revenue.

Floor deliberations in both chambers will also feature high-profile debates over congressional earmarking. Many Republicans have pushed for a moratorium on earmarks and Sen. Jim DeMint (R-SC) says he will offer a budget amendment that would halt the practice. In the House, Republicans say they will offer a budget substitute that also imposes an earmark moratorium while a bipartisan group studies a possible overhaul - although Democratic leaders are also now discussing a possible moratorium, and could move on their own.

Senate debate on the budget begins Monday afternoon, while the House isn't expected to consider its budget until Wednesday or Thursday. The Senate has up to 50 hours for debate, although consideration is expected to end Thursday when the chamber votes on dozens of amendments in what is known as the "vote-a-rama." In the House, only a handful of substitutes are expected, including those by the Congressional Black Caucus - focusing on repealing some Bush tax cuts and boosting funding for education, veterans, international affairs, SCHIP, and low-income programs - and by the liberal Democrats who make up the Progressive Coalition, which would repeal tax cuts for the wealthiest one percent of taxpayers, reduce the Defense budget, and provide for a stimulus package.

The House Labor-HHS-Education Subcommittee will hold a hearing on "training and employment services in the current economy," at which NCIL President Kelly Buckland will testify to the need for increased funding for the Independent Living Program. Urge your Representatives to attend (see full story below)! 10:00 a.m. Tuesday, 2358-C Rayburn.

2) National News

NCIL President to Testify Before Appropriations Panel

House Appropriations Labor, Health, and Human Services, and Education Subcommittee Chairman David Obey (D -WI) invited NCIL President Kelly Buckland to testify on Thursday, March 13^th about funding for the Departments of Labor, Health and Human Services, and Education (Labor- HHS-Ed) bill, which provides funding for a broad range of programs and activities, including funding for Independent Living. Kelly will speak about the importance of increasing funding for the Independent Living Program to enhance the lives of millions of Americans with disabilities. Read Kelly's testimony online at www.ncil.org/news/ILFundingTestimony.html.

TAKE ACTION! Support Kelly by:

1. Urging Congress to Attend Hearing & Support Increased Funding for the Independent Living Program;

2. Attending the Hearing Thursday, March 13, 2008, 10:00 a.m.

Room 2358-C of the Rayburn House Office Building: Independence Avenue, South Capitol Street, C Street, and First Street S.W. (Capitol South Metro Station)

NCIL Presdient Kelly Buckland NCIL is asking for an increase of $100 million (for a total funding of $173.3 million annually for Independent Living) to not only restore funding cuts over the past three years, but also to reinvest the millions of dollars in savings to the Federal government that IL provides by transitioning and preventing thousands of Americans from forced institutionalization in by providing people with disabilities the information and tools they need to remain in their communities.

Call your Representative today and tell them to attend the hearing and support increased funding for the Independent Living Program! If your Representative serves on the House Appropriations Labor, Health and Human Services, Education, and related Agencies Subcommittee, then your phone call is critical!

Call the Capitol Switchboard at (202) 224-3121 and ask for your Representative's office. Once connected with their office, ask to speak with the staff person who handles appropriations for the Department of Education.

CALL SCRIPT: Hello, My name is [YOUR FULL NAME]. I'm calling from [CITY, STATE] to urge you and the Representative to attend the Appropriation Subcommittee hearing on Thursday, March 13^th to see NCIL President Kelly Buckland testify about funding for the Independent Living Program.

As a constituent and registered voter, I strongly urge the Representative to attend the hearing at 10:00 AM, in Room 2358-C of the Rayburn House Office Building and to support increased funding for the Independent Living Program, which enables people with any type of disability, of any age, to remain active in their community rather than isolated in costly nursing homes.

If you can talk to a staff person, you may have time to make additional points, as well. You can find more talking points and a list of Subcommittee Members, along with Kelly's full testimony at: www.ncil.org/news/ILFundingTestimony.html

House Passes Parity Bill: Clock Running Out for Final Passage

Your support for mental health parity helped propel the Paul Wellstone Mental Health and Addiction Equity Act, H.R. 1424, to a historic vote in the House of Representatives, where it passed 268-148 on March 5th. This first-ever House vote on a comprehensive mental health/addiction parity bill gives our cause new momentum.

But even with this victory, there is still more work to do. The House-passed measure must now be reconciled with a parity bill already passed by the Senate, S. 558. A final version will have to be approved by both chambers and signed by the President before people living with mental illnesses will finally have the same rights under their insurance plans as individuals with other health conditions.

TAKE ACTION: Tell Congress to enact a strong Parity Bill This Year!

You can make the difference in delivering that message to your elected officials! Be on the lookout for further updates and opportunities to help us finalize and implement this hard-won civil rights victory!

House Approves Bill on Mental Health Parity
Source: The New York Times, by Robert Pear

After more than a decade of struggle, the House on Wednesday passed a bill requiring most group health plans to provide more generous coverage for treatment of mental illnesses, comparable to what they provide for physical illnesses. The vote was 268 to 148, with 47 Republicans joining 221 Democrats in support of the measure.

The Senate has passed a similar bill requiring equivalence, or parity, in coverage of mental and physical ailments. Federal law now allows insurers to discriminate, and most do so, by setting higher co-payments or stricter limits on mental health benefits.

"Illness of the brain must be treated just like illness anywhere else in the body," said Speaker Nancy Pelosi, Democrat of California. Supporters of the House bill, including consumer groups and the American Psychiatric Association, said it would be a boon to many of the 35 million Americans who experience disabling symptoms of mental disorders each year. Read this article in full.

NCIL and AAPD Convene Advocates to Increase Federal Employment of People with Disabilities

On Feb 28^th, NCIL Executive Director John Lancaster and Policy Analyst Deb Cotter joined American Association of People with Disabilities President Andy Imparato and Policy Counsel Anne Sommers to convene a meeting of disability advocates in Washington in order to discuss Federal employment trends of people with disabilities.

Christine Griffin, a Commissioner at the Equal Employment Opportunity Commission (EEOC) spoke about the findings of a recent EEOC report, "Improving the Participation Rate of People with Targeted Disabilities in the Federal Work Force".

NCIL Social Security Subcommittee member Marcie Goldstein spoke about her personal experience with the Federal government and NCIL's advocacy efforts to increase awareness and full enforcement of the Rehabilitation Act of 1973, as amended, to hold the government accountable for increasing the employment rate of people with disabilities in the Federal workforce.

Advocates and organizations are encouraged to write to Representative Henry Waxman (D-CA) to request a Congressional oversight hearing; contact the Presidential candidates about this issue; and work with government agencies to provide technical assistance about hiring people with disabilities. For more information, please contact NCIL Policy Analyst Deb Cotter at (202) 207-0334, ext. 1008 or deb@ncil.org

NCIL Veterans Committee 2008 Survey Results

Last fall NCIL conducted a survey regarding Veterans and how Centers for Independent Living provide services. The survey results indicated veterans are seeking services at Independent Living Centers across the country.

The most common disability among veterans served was mental illness, as well as a variety of physical disabilities and secondary disabilities. The most frequently requested services are housing, benefits counseling (navigating VA services), information and referral, personal assistant services, advocacy, IL skills training, and assistive technology. Most Centers felt they were staffed adequately to meet the needs of veterans. Centers reported the most needed resources include more funding for staff, a veteran on staff, and training for CIL staff regarding PTSD, military culture, navigating the VA system, outreach to the VA, and the intersection of VA and IL benefits/services. The demographics section revealed the age of veterans varied widely from 20 to 85 years old. Most Centers reported working with veterans who served in Vietnam, Desert Storm, Gulf War, Korea, Granada, WWII, Iraq and Afghanistan. When asked about coordination with other veterans' organizations, respondents reported that PVA (Paralyzed Veterans of America), DAV (Disabled American Veterans), AM Vets, VFW, the American Legion, POW/MIA and Veterans/Military Affairs Committees have been utilized for information and referrals.

Much more needs to be done to coordinate services for our returning veterans as well as our aging veterans.

Kelly Buckland, President of NCIL recognizes this problem and has appointed Steve Thovson from Minnesota as the Chair of the Veterans Committee. The Committee is tasked to:

1. Get an idea of how CILs are currently serving veterans using the 2007 survey as a basis.

2. Determine what NCIL and members can do to better serve veterans. (CILs will need to determine what their state or region does), determine gaps that exist between what the VA can do and what CILs can offer, etc. and

3. Identify funding that NCIL can pursue to provide veteran services.

If you're passionate about Veterans issues or would like to contribute to the Committee, please contact Steve Thovson at steve@swcil.com or Elizabeth Leef at Elizabeth@ncil.org.

Four States Ask Court to Overturn Limits on Payments for Case Management

Source: BNA

Four state Medicaid agencies filed suit against the federal Department of Health and Human Services Feb. 29, asking the U.S. District Court for the District of Columbia to strike down a new rule restricting reimbursement for case management services (Maine Department of Health and Human Services v. U.S. Department of Health and Human Services, D. D.C., case number unavailable, 2/29/08).

The interim final rule, which went into effect on March 3, will "jeopardize the health and safety of Medicaid beneficiaries, limit state flexibility to provide case management in the most effective and efficient manner, and result in a substantial reduction in federal funds" for case management services, the four state agencies told the court.

The lawsuit was filed by Maine, Maryland, New Jersey, and Oklahoma. David Loughran, a spokesman for Maine Attorney General G. Steven Rowe (D), said other states are affected by the rule and are considering joining the litigation. The agency rule will cost Maine $16 million over the next two fiscal years, Loughran said. Figures were not available for the other three states. A spokeswoman for HHS was not available for comment.

Alleged Violation of Deficit Reduction Act: According to the complaint, the challenged provisions of the rule violate the Deficit Reduction Act of 2005.

The HHS secretary did not provide notice or seek comment before publishing the rule in the Federal Register on Dec. 4, 2007, and the rule goes beyond the secretary's authority and is arbitrary and capricious, the state Medicaid agencies said.

Since 1986, the plaintiff agencies said, "case management" and "targeted case management" have been services that a state may elect to provide as a Medicaid benefit to Medicaid-eligible beneficiaries.

These services assist beneficiaries in gaining access to medical, social, educational, and other services. Congress clarified the scope of the services under the Deficit Reduction Act and stated that costs were reimbursable, according to the complaint.

The interim rule is not in accordance with that law because it excludes the delivery of foster care services, restricts the states' right to direct the delivery of underlying services, limits the scope of underlying administrative activities, and removes the ability of the state to require assessments for affected populations, the states alleged.

"This federal rule will abruptly cut off funding that helps protect the health and safety of our state's most vulnerable citizens," Rowe said in a statement. By eliminating fundamental services, the rule will lead to "a lower quality of life and an increase in the cost of care the state will have to provide," he said.

3) State News

Bredesen Releases Details on Home-based Care Plan
Tennessee

Source: AP

Governor Phil Bredesen is proposing giving many elderly and disabled Tennesseans the option of staying out of nursing homes by providing them with caregivers in their own homes.

The state currently spends about $1.2 billion a year on long-term care services through TennCare, with about 98 percent of it directed at nursing home facilities.

Officials estimate that Bredesen's plan could direct about half of those funds to home-based care over the next decade.

Bredesen, a Democrat, said his proposal also would simplify the process for how elderly or disabled people find out whether they qualify for home-based care.

"At its core, this is about keeping people in their homes as long as they want to remain in their homes," Bredesen said.

Darin Gordon, TennCare's director, said there's no reliable way to predict how many people will choose home-based care once it becomes more widely available. But, based on the experience of other states, Tennessee could move to a 50 percent split between home-based and nursing home services in six to 10 years, he said.

The average cost per person in home and community-based care is about $12,000 per year, while nursing home costs for a year can range between $45,000 and $60,000 per person, Gordon said.

If the Legislature approves Bredesen's plan this year, it will start in July 2009. "This is a fundamental restructuring," Bredesen said. "It's about quality; it's about offering choices; it's about simplifying the system."

4) Announcements

Feel the Power of the Disability Vote! Presidential Candidate Forum

Celebrate the 18th Anniversary of the ADA at a National Presidential Candidate Forum on Disability Issues! This event will take place Saturday, July 26, 2008 at the Veterans' Memorial in Columbus OH. This event is free and everyone is welcome! Hosted by: Ohio Disability Vote Coalition and major national sponsors, including NCIL. Additional information will be coming!

SEANLKELLY

NCIL WEEKLY ADVOCACY MONITOR (WhAM) 03-24-08

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Posts: 209

03/28/08 13:28:36

Weekly Advocacy Monitor

WhAM!

Volume 6, Issue 11 March 24, 2008

1) What's Happening in the Nation's Capital?. 2

House and Senate Approve Fiscal Year 2009 Budget Resolutions. 2

2) National News. 3

Social Security Prepares to Re-launch Ticket to Work Program; Summit Energizes Advocates and Beneficiaries. 3

PAS & Healthcare Committee Update! 4

3) State News. 5

West Virginia 'Lunatic Asylum' Angers Advocates. 5

4) Announcements. 6

Benefits to Work Calculator Upgraded. 6

Walgreen's Shows Successful Business Model, Not Charity, Employing People with Disabilities 8

NCIL Request for Proposals: Aging and Disability Communities Collaboration. 8

International Conference on Self-Determination. 9

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

Both the House and Senate are currently on a two week recess in their districts and will not return until March 31^st.

House and Senate Approve Fiscal Year 2009 Budget Resolutions

Both Houses of Congress narrowly adopted their versions of the fiscal year 2009 Budget Resolution (BR). The House adopted its Resolution on March 13^th, by a vote of 212 to 207, mostly along party line. The Senate voted 51 to 49 at 2 a.m. on March 14 to adopt its version. Despite support from the three remaining Presidential candidates, all of whom are Senators, a one year moratorium on earmarked spending was shot down convincingly in both Houses. There are several major differences in the Budget Resolutions, outlined by section below.

Domestic Spending. Both bills would spend more money on domestic spending than the White House budget. The Senate would spend $21.8 billion over the Bush Administration request and the House Resolution would provide $3.5 billion more than the Senate for domestic spending. The House would allow for $25.4 billion for non-emergency discretionary spending.

Medicaid Regulations. Senator Charles Grassley (R-IA) ultimately did not offer an amendment imposing restrictions on the budget resolution's reserve fund for moratoria on Medicaid regulations.

A "Sense of the Senate" Concurrent Resolution (S. Con. 70), offered by Budget Committee Chairman Kent Conrad (D-ND) on behalf of Finance Committee Chairman Max Baucus (D-MT), to "express the sense of the Senate that Medicaid administrative regulations should not undermine Medicaid's role in our Nation's healthcare system, cap Federal Medicaid spending, or otherwise shift Medicaid cost burdens to State or local governments and their taxpayers and health providers, or undermine the Federal guarantee of health insurance coverage Medicaid provides" did pass.

Reconciliation Instructions. The Budget Resolutions differ in reconciliation instructions given to committees of jurisdiction to reshape entitlement spending. Reconciliation is the usual procedure used to modify entitlement spending such as Medicaid, Medicare, and Social Security. The House bill instructs the Ways and Means Committee to produce $750 million in savings over the next six years from entitlement programs. These savings would be used to prevent a looming ten percent reduction in Medicare payments to physicians. The Senate Resolution has no reconciliation instructions.

FY 2001 & 2003 Budget Cuts. During debate on the Resolutions, the Senate spent considerable time debating the fate of the Bush budget cuts enacted in 2001 and 2003, many of which are set to expire in 2010. Specific action on these cuts is expected to be delayed until next year.

Lifespan Respite. The Senate passed an amendment by unanimous consent reserving $53 million for Lifespan Respite. Currently Lifespan Respite, although authorized, has no funding. Senate Lifespan Respite champions Senators Hillary Clinton (D-NY) and John Warner (R-VA) offered the amendment. While this amendment does not guarantee an appropriation for the program, it is an important step in the process and signals support to appropriators as they craft spending bills.

Education. An amendment offered by Senator Bernie Sanders (I-VT) that would have added $10 billion to IDEA funding as well as other increases to human services programs was defeated by a vote of 43 to 55.

The House and Senate will attempt to reconcile the differences in these bills in April. For more information about the federal budget and appropriations process, visit the Library of Congress or contact Deb Cotter, NCIL Policy Analyst by email at deb@ncil.org or by phone at (202) 207-0334, ext. 1008.

2) National News

Social Security Prepares to Re-launch Ticket to Work Program; Summit Energizes Advocates and Beneficiaries

In preparation for the implementation of the Ticket to Work and Work Incentives Improvement Act of 1999, final regulations are due to be released this month. NCIL is working with the Social Security Administration (SSA) to "relaunch" the Ticket Program, which provides Social Security Disability Insurance (SSDI) and Supplemental Security Insurance (SSI) beneficiaries with an opportunity to enter or reenter the workforce.

March 10-13th, NCIL policy staff joined SSA officials and other partners working to implement the program at a Ticket Partners Summit in Louisville, KY to strategize about fully implementing the forthcoming final Ticket regulations. Although some individuals with disabilities have successfully left the Social Security disability programs for work by taking advantage of TTW, the Ticket program has been more limited than disability advocates had expected. At last week's Summit, SSA met with representatives of state Vocational Rehabilitation, other rehabilitation service providers and employment networks, businesses, Work Incentives Planning and Assistance Programs, Protection and Advocacy Systems, beneficiaries, and NCIL. The goal was to stimulate more interest and to share opportunities for improved cooperation. NCIL continues to help implement the program by encouraging Centers for Independent Living (CILs) and Statewide Independent Living Councils (SILCs) to consider becoming Employment Networks, which enter into contracts with SSA to assume responsibility for the coordination and delivery of appropriate employment, employment activities, and other support services under the Ticket to Work Program. Final regulations are expected to further improve the mechanics of the Ticket program. Ticket to Work has created an "Employment Network Revenue Estimator" that CILs and SILC can use to calculate the advantages in becoming an Employment Network!

For more information, including the benefits of becoming an Employment Network, please visit: www.ssa.gov/work. NCIL Policy Analyst Deb Cotter can put you in touch with the appropriate Ticket to Work staff to discuss the application process, and address specific questions. Please feel free to contact Deb by phone at (202) 207- 0334, ext. 1008 or email, deb@ncil.org. Please see related stories below, "Benefits to Work Calculator Upgraded" and "Walgreens Shows Successful Business Model, Not Charity, Employing People with Disabilities"

PAS & Healthcare Committee Update!

The PAS Committee is hard at work tackling issues such as the Community Choice Act (CCA). S. 799 by Senator Tom Harkin (D-IA) now has 20 co-sponsors and the House bill, H.R. 1621 by Representative Danny Davis (D-IL) has 82 co-sponsors! The Congressional Budget Office is still working on scoring the legislation. Stay tuned for breaking news!

New Harmful CMS Regulations: The PAS Committee is doing a lot of work around CMS rules and regulations on targeted case management and other issues important to the disability community. The PAS Committee encourages all NCIL members to call their elected legislators to support H.R. 5173 by Representative Ellison (D-MN) and S. 2578 by Senator Norm Coleman (D-MN) to temporarily delay application of proposed changes to Medicaid payment rules for case management and targeted case management services. Yet another bill on this issue, H.R. 5613, was just introduced by Energy & Commerce Chairman John Dingell (D-MI), which would prohibit CMS from taking action to implement the regulations until April of 2009. These regulations include CMS limiting Medicaid payments for targeted case management services, rehabilitation services, school-based transportation and outreach services, governmental providers, provider taxes, and hospital outpatient services.

Universal Healthcare: The Healthcare Committee continues to discuss Universal Health Care coverage and the status on pending supportive legislation. This Committee is also working on:

Accessible Healthcare: If you are tired of falling off exam tables or not getting quality healthcare, support Promoting Wellness for Individuals with Disabilities. S.1050 by Senator Harkin (D-IA) has 3 co-sponsors and H.R. 3294 by Representative Nita Lowey (D-NY) has 6 co-sponsors.

Elimination of the In-Home Rule: If you are tired of being trapped in your home because your current wheelchair isn't designed for outdoor use, support the Medicare Independent Living Act, H.R. 1809 by Representative Langevin (D-RI), which has 40 co-sponsors, and S. 2103 by Senator Bingaman (D-NM), which has 10 co-sponsors. This legislation would eliminate the "In-Home Rule".

Ending the Medicare Waiting Period: If you are finally entitled to SSDI but now have to wait two years for health coverage when you need it right now, call or write to your elected Representative and ask them sign onto the Ending the Medicare Waiting Period Act by Representative Green (D-TX). H.R. 154 has 29 co-sponsors and S. 2102 by Senator Bingaman (D-NM) has 12 co-sponsors.

Assistive Technology: The Assistive Technology Subcommittee submitted a Thank you letter on March 14th to Representative Ed Markey for introducing the Twenty-First Century Communications and Video Accessibility Act. This legislation will ensure that individuals with disabilities have access to emerging Internet-based communications and video programming technologies in the 21st century.

If legislation is important to you, call your elected federal representatives and let them know how you feel. Congress must be reminded on a regular basis about our issues because of the large volume of requests the congressional offices take daily. Don't let your issue go by unnoticed. As Anita Koddick says, "If you think you're too small to have any impact, try going to bed with a mosquito in the room." For more information, please contact Elizabeth Leef at elizabeth@ncil.org or 2020-207-0334.

3) State News

West Virginia 'Lunatic Asylum' Angers Advocates

Source: AOL News, AP, by Vicki Smith

It is an intriguing and provocative name that translates to Web hits, phone calls and tour tickets - the Trans-Allegheny Lunatic Asylum. The new owners of this former mental institution in Weston, W. Va., have opened it up for tours. "It's not a freak show," one owner said.

It is a title, to some, that acknowledges history by recreating it, readopting one of the many names previously held by the long-vacant, 19th-century West Virginia mental institution known most recently as Weston Hospital.

But mental health advocates and a marketing expert say the new owners of the massive Gothic Revival hospital have gone too far, denigrating the suffering of former patients and reopening wounds with planned events like "Psyco Path" dirt bike races on the grounds. They say words like "lunatic" and "retarded" have gone the way of "colored" and "Negro" - and should never be resurrected.

"It's like turning back the clock to a time we don't want to go back to," says Ann McDaniel, executive director of the Statewide Independent Living Council, one of several advocacy groups to object. "I think they could still do what they want to do without being offensive."

Scott Miller, director of Mountain State Direct Action Center in Lewisburg, says one former patient burst into tears after seeing the name on a sign. "It's not just that I'm a liberal and I think it's not a good idea. It's seeing people physically hurt," he says. "That's about all I needed to know."

Rebecca Jordan, whose family now owns the 307-acre (124-hectare) complex, sees things differently. "This part of history is vital, and you cannot bury what you don't like," she says. "Should we take down the Holocaust museum? Should we completely deny all that happened because it's not favorable? Because it might hurt a few feelings?"

The daily tours that began last week, $10 to $30 depending on duration, focus on serious issues such as the evolution of mental health care, the Civil War, the Great Depression, even architecture. "Not one person who has gone through this place and taken the tour has said that one thing was offensive," Jordan says. "It's not a freak show." Read the article in full.

4) Announcements

Benefits to Work Calculator Upgraded

During the Ticket to Work "Partners' Summit," Bryon Mac Donald conducted a demonstration of the Disability Benefits 101 Calculator. The World Institute on Disability has upgraded and launched a new 2.0 version of its Benefits to Work Calculator, which shows California beneficiaries how their benefits might change when taking a job, changing jobs or starting a business. The improved online calculator tool allows workers and job seekers to plan ahead with new features for more personal and real-life planning. Users can now compare new job offers and their impact on benefits and health coverage. Bryon, who serves as chair of the NCIL Employment / Social Security Subcommittee, received praise from the several dozen participants who stayed late into the evening to talk with him about the improved design of the calculator, and more specifically, about getting calculators for their states - stay tuned!

DB101 also launched the newsletter Employment Matters, news and views from DB101, to share related information on changing times, topics, programs and resources. DB101 visitors can subscribe via the newsletter tab on DB101.

The revamped website features revised sections on the Earned Income Tax Credit, Individual Development Accounts, and the Work Opportunity Tax Credit. All new features are in English and Spanish.

Recently DB101 launched the Plan for Achieving Self Support (PASS) Calculator. Social Security's PASS program can help you set aside money to fund a career goal. DB101's PASS Calculator provides estimates on how setting up a PASS might affect your finances, and can help you decide if the PASS program is something you want to explore further.

Other calculators include the Medi-Cal for the Working Disabled Calculator, which estimates whether you can access health coverage through Medi-Cal's 250% Working Disabled Program. DB101's School and Work Calculator helps youth aged 14 to 18 navigate and plan for important benefit changes that may occur at age 18.

If you are leaving a job or have left one recently, and expect to start your next one within a year, DB101's Job-to-Job Calculator can show you what might happen to your income and health coverage during the gap.

Work and Benefits Calculators are easy to use, screen reader accessible and in plain language (English and Spanish). They are completely confidential. The DB101 team designed these calculator tools for and with people with disabilities and their families, as well as service providers and the employers who work with them. In developing the new tools, the design team received and used input from benefits planners and beneficiaries using public and private benefits.

A contract with the Social Security Administration allowed DB101 to complete the calculator tools by the end of this year. The calculators are the result of pioneering design and development support since 2002 from the California Department of Rehabilitation, the Employment Development Department, the California Health Incentives Improvement Project, the Community Technology Foundation of California, and The California Endowment. Key design partners are Eightfold Way Consultants, Berkeley, California, and ECONorthwest, Portland, Oregon. For more information, visit www.db101.org or contact Bryon MacDonald by phone (610) 251-4304, TTY (620) 208- 9496, or email bryon@wid.org.

Walgreen's Shows Successful Business Model, Not Charity, Employing People with Disabilities

One of the highlights of the above- mentioned Ticket to Work Partners Summit was the keynote address by Walgreens Vice President Randy Lewis, who spoke about Walgreens' new Distribution Center in Anderson, SC, where 42% of the 250 employees are people with cognitive and/or physical disabilities. Mr. Lewis, whose son has Autism, spoke of the benefits the universally designed distribution center had for all of its employees and how the integrated workforce has helped increase morale and educate non disabled workers about the contributions people with disabilities can, and want to make by securing employment. Walgreen's is participating in the Ticket to Work Program serving as an Employment Network. Mr. Lewis reiterated that the Distribution Center is just a start, a baby step toward integrating the workforce. He continues to meet with business leaders to promote the inclusion and accommodation of people with disabilities in the workforce and, during the question and answer period, acknowledged that Walgreen's needs to do more to hire people with disabilities in their retail stores throughout the country in entry level and professional positions. This would go a long way in showing American consumers the benefit of hiring qualified people with disabilities. News clips about Walgreen's effort, visit:

ABC: Walgreens Gives Hope to Disabled Workforce

NBC: Walgreens program puts the 'able' in disabled: Drugstore chain mainstreams handicapped workers at new S.C. facility

Please note that although the second article has text, neither video is closed captioned. Feel free to contact your local ABC or NBC affiliate about making their news clips accessible.

NCIL Request for Proposals: Aging and Disability Communities Collaboration

A Request for Proposals was released March 14^th for collaboration between independent living advocates and the aging community. Grants will be awarded to CILs, SILCs or associations for independent living centers to develop exemplary plans for collaboration, education and exchange of information and resources among the independent living community, the aging community, and ADRCs. For more information, please contact Elizabeth Leef at elizabeth@ncil.org or 202-207-0334.

International Conference on Self-Determination

On May 27-29, 2008 at the sophisticated Detroit Marriott Renaissance Center, the International Conference on Self-Determination will serve a much different purpose than most other conferences. It's designed to be a combination of a few very short presentations, but mostly panel discussions and roundtables organized by topic with a diversity of moderators and cross-disability panel members rather than a single focus presentation by a particular individual or organization. Each session is organized across disabilities. Please check out the electronic brochure. To request multiple brochures for distribution at upcoming meetings and events, please email info.icsd@gmail.com .

The time has come to move forward for self-determination for all. Please join us for this unique conference opportunity.

SEANLKELLY

NCIL WEEKLY ADVOCACY MONITOR (WhAM) 03-31-08

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Posts: 209

03/31/08 13:41:02

Weekly Advocacy Monitor

WhAM!

Volume 6, Issue 12 March 31, 2008

1) What's Happening in the Nation's Capital?. 2

2) National News. 3

Breaking News: HUD Secretary Jackson Announces Resignation. 3

Senate Banking Committee Chairman Introduces Section 8 Bill 4

Violence Awareness Survey for Independent Living Centers. 4

NAD Partners with the IRS to Share Important Information. 6

Access Board Emergency Transportable Housing Committee Meeting. 6

Aging and Disability Collaboration Update. 7

3) State News. 7

Nursing Home Residents Sue for At-Home Care. 7

Tiahrt Addresses Variety of Issues, Including CCA.. 8

4) Announcements. 9

HUD Funding Notice. 9

Forum to Preview Frontline on Health Care Systems Around the World. 9

2008 ADA Symposium.. 10

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

Source: CQ Budget Tracker

Congress returns this week hoping to reach a budget deal in the next month, although lawmakers will also again focus on Iraq War spending.

The toughest obstacle on the path toward a completed budget resolution is whether to stick with pay-as-you-go rules, especially for an "AMT patch." In recent years, the Alternative Minimum Tax has been under increased attention. House Democrats want strict adherence to PAYGO as a matter of discipline, but the GOP blocked their efforts to affect the AMT last year. The House seeks to circumvent GOP objections by moving it under budget reconciliation provisions, something that would prevent a Senate GOP filibuster.

Behind-the-scenes negotiations by Democrats will probably take several weeks. Under the 1974 Budget Act, Congress is supposed to complete its budget by April 15, but that target is usually missed. Negotiators also must decide whether to include reconciliation instructions to move legislation addressing certain changes to Medicare, and to set a top-line discretionary spending limit for appropriations bills.

Although the 2008 Medicare and Social Security Trustees Report didn't change annual projections for the exhaustion of trust funds, it did hit a "trigger" that asks the president to propose ways to slow growth in Medicare costs. The next President's Administration should turn in a proposal for slowing the growth of Medicare costs within 15 days of submitting its fiscal 2010 budget request, the trustees said.

Social Security's trust funds are reported to become insolvent by 2041, while Medicare's hospital insurance trust fund will hit that point in 2019. Some Democrats have sought to get rid of the trigger, which they see as ploy to spur privatization of Medicare. The goals of Republicans are "arbitrarily limiting funding and converting Medicare from an entitlement program into a voucher," said Pete Stark, a Democrat from California, who leads the House Ways and Means Subcommittee that oversees Medicare. Democrats last year proposed doing away with the trigger as part of the reauthorization of the SCHIP program. That would be a "huge mistake," said Greg D'Angelo, a researcher at the Heritage Foundation. The trigger doesn't force Congress to take action; it only provides a prompt for the administration and Congress to consider the long-term concerns about Medicare. These concerns have been somewhat lost in current storms over how lawmakers fund pet projects - decisions that have little or no effect of how much the U.S. spends, veteran budgeteers say. "You'll hear a lot about earmarks, but you won't hear much about the Social Security and Medicare trustees report," Hoagland said.

2) National News

Sign Petition Calling for Hearing on Federal Employment of People with Disabilities

Despite Federal law mandating the hiring of people with disabilities by the Federal government, less than 1% of the 2.6 million people of Federal workforce are people with "targeted disabilities". NCIL and AAPD have launched an effort to convince Congress to hold oversight hearings on this issue to hold government agencies accountable for their inaction and non-compliance. We strongly urge your organization to sign onto our letter urging House Oversight and Government Reform Committee Chairman Henry Waxman (D-CA) to hold a hearing on the employment of people with disabilities in the Federal government. For background information, please see NCIL's Fact Sheet on the Schedule A Hiring Authority.

Breaking News: HUD Secretary Jackson Announces Resignation

Source: Politico / CBS

Housing and Urban Development Secretary Alphonso Jackson announced his resignation Monday, bowing to pressure to step aside.

"There are times when one must attend more diligently to personal and family matters," Jackson said in his resignation letter. "Now is such a time for me"

Earlier this month, two Democratic senators, Patty Murray of Washington and Christopher Dodd of Connecticut, sent a letter to President Bush urging him to call for Mr. Jackson's resignation, arguing that accusations of wrongdoing had made him unable to perform his duties at the proper level.

Jackson has been involved in a controversy over a Philadelphia redevelopment project, with accusations aired in a lawsuit that Jackson tried to retaliate against a city agency after it refused to award a contract to one of his friends. Jackson and other HUD officials have denied any wrongdoing.

Jackson said in the letter he will stay on until April 18, to "fully assist in the orderly transition of the leadership at HUD."

Jackson's departure comes at a critical time for the Bush administration and Congress as political leaders in Washington scramble to deal with the fallout from the subprime mortgage crisis. HUD oversees the Federal Housing Administration, a critical player in any federal response to the problems in the nation's housing market. Read a much more detailed account from the Dallas News.

Senate Banking Committee Chairman Introduces Section 8 Bill

On March 3^rd, Senate Banking Committee Chairman Christopher Dodd (D-CT) introduced the Section 8 Voucher Reform Act of 2008 (SEVRA), S. 2684. The bill would streamline housing inspections, simplify income determinations, and ease the portability process. The legislation would also allow public housing authorities (PHAs) to use a larger share of vouchers for project-based assistance and would authorize project-based preservation vouchers to be used in place of enhanced tenant-based assistance. NCIL's Housing Subcommittee is reviewing the Senate draft and will send the NCIL Housing Subcommittee is drafting a letter to send the chairman outlining key concerns. The NCIL SEVRA Position Paper is available online. Individual NCIL members are encouraged to participate in the Housing Subcommittee. Contact Subcommittee Chair Brian Peters.

The House passed its version of voucher reform legislation (H.R. 1851) last year. Both bills include an allocation formula that distributes funds to Public Housing Authorities (PHAs) based on leasing and cost data from the previous year. Like the House bill, the Senate bill would authorize 100,000 new vouchers during a five-year period.

Violence Awareness Survey for Independent Living Centers

By Leslie Myers, Co-Chair, Task Force on Violence and Abuse of People with Disabilities

In 2007 the NCIL Task Force on Violence and Abuse of People with Disabilities developed the Violence Awareness Survey for Independent Living Centers for NCIL members to determine what CILs across the country are doing to assist their consumers who are experiencing violence/abuse and what CILs might need from the Task Force to help them do this work. The surveys were sent out via e-mail by NCIL and then again in WhAM; the surveys were also handed out at the 2007 NCIL conference by members of the Task Force and employees of IndependenceFirst. APRIL also used the survey and sent it out to their membership and had it available at their annual conference.

The survey was sent to the 229 CILs on the NCIL membership list, 73 returned the survey and when multiple surveys were received from the same CIL, the survey answers were averaged together. An additional 37 surveys were returned from CILs that were either not NCIL members or were satellite programs of another CIL, these surveys were added to the total possible surveys giving us 110 surveys (73 + 37) returned from a potential 266 programs (229 + 37) or a 41.35% return rate.

Results:

· 89% (n=98) of the CILs that responded said that they feel that it is extremely important for Independent Living Centers to understand and respond to the issue of violence against people with disabilities.

· 58.2% (n=64) of the respondents said they are some-what comfortable responding to violence/abuse issues of their consumers and 36.4% (n=40) indicated that they were extremely comfortable.

· 70% (n=77) of the programs that responded said that they are some-what confident that they could recognize the signs of abuse, while 20% (n=22) were extremely confident.

· 70% (n=77) of the CILs indicated that they are extremely confident they can refer a consumer experiencing violence/abuse to the appropriate community based services.

· 72% (n=79) of the CILs responded that they do not include questions about violence/abuse on their intake forms or as a regular part of their programming.

· 71% (n=78) CILs have a policy/procedure for responding to reports of violence/abuse of their consumers.

Survey participants were then ask what types of violence/abuse that their staff had dealt with or responded to, the following is a breakdown of the answers we received:

· 77% (n=85) Emotional / psychological abuse

· 75.4% (n=83) Domestic violence

· 75.4% (n=83) Financial exploitation

· 70% (n=77) Abuse by a caregiver

· 47% (n=52) Sexual assault

· 41% (n=45) Abuse in an institution

· 39% (n=43) Assault

· 34% (n=37) Robbery

· 18% (n=20) Hate crimes

We also asked survey participants what type of information or training they would like the Task Force to do to help them better serve people with disabilities who had been victims of violence/abuse, the following topics were mentioned:

· Role of CILs in dealing with Violence/Abuse 91% (n=100)

· Intervention Strategies 84% (n=93)

· Recognizing the Signs of Violence/Abuse 83% (n=91)

· Prevention Strategies 80% (n=88)

· Basic Information on Violence/Abuse and People with Disabilities 75% (n=82)

· Advocating for Victims with Disabilities 73% (n=80)

· Collaborating with Programs Serving Victims 72% (n=78)

· Outreach 52% (n=57)

The Task Force will use the information provided from this survey to design phone and internet training, as well as to build an on-line tool kit for CILs. If you are interested in being part of the NCIL Task Force on Violence and Abuse of People with Disabilities, we have a monthly conference call on the 1^st Thursday at 1:00 (CST). Feel free to contact Leslie Myers, NCIL Task Force Co-Chair at (414) 226-8381 or lmyers@independencefirst.org if you have any question about the results of our survey or if you are interested in joining the Task Force. The Task Force would like to thank all those programs that took the time to complete the survey.

NAD Partners with the IRS to Share Important Information

The National Association of the Deaf (NAD) announced that it has partnered with the Internal Revenue Service (IRS) to make sure important information reaches the deaf community. The IRS produced three pilot videos, "Economic Stimulus Payment Basics", in American Sign Language (ASL) along with an English transcript of the content. These pilot videos are available on the NAD website.

"This is the first time that the IRS has produced Public Service Announcement (PSA) videos in ASL with an English transcript," said Nancy J. Bloch, NAD Chief Executive Officer. "We are delighted to bring you these video clips."

More Information about the Economic Stimulus Package can be found on the IRS website.

Access Board Emergency Transportable Housing Committee Meeting

On March 27^th and 28^th, the Emergency Transportable Housing Advisory Committee met to review recommendations to the Board. The Board convened the Advisory Committee to address access to emergency transportable housing. Access to such housing proved problematic in the aftermath of Hurricane Katrina and, after verifying and examining the issues involved, the Board has determined that supplementary guidelines are needed. The Emergency Transportable Housing Advisory Committee, which includes representation from disability groups including NCIL Policy Analyst Deb Cotter, industry and code groups, and government agencies, will develop recommendations to the Board on tailoring or clarifying coverage of emergency transportable housing in its facility guidelines. For additional information, including members, agendas, and minutes to previous meetings, please visit the Advisory Committee's website.

Aging and Disability Collaboration Update

The Annual Conference of the National Council on Aging and the American Society on Aging was held in Washington D.C. March 26-30, 2008.

NCIL and the Administration on Aging presented "Promising Practices of Aging and Disability Partnerships". There was 32 other workshops scheduled at the same time and over 40 people attended the presentation.

Aging Disability Resource Centers (ADRCs) are developing all over the country. Independent living advocates and aging advocates are being encouraged to work together to create partnerships that value similarities and differences as well as determine which services should be coordinated, integrated or left alone. The ADRCs were established to ensure partnerships that will be a resource for all persons regardless of age, income, or disability to access long-term care resources and services.

NCIL currently has a request for proposals on Best Practices for Collaboration between Independent Living Advocates and Aging Advocates. The application process ends April 14^th. Awards will be made by April 21^st. These mini-grants were developed to encourage independent living advocates to network with aging advocates by developing exemplary plans for collaboration, education and exchange of information and resources among the independent living community, the aging community and ADRCs. See the NCIL website for areas of collaboration. If you have questions about the ADRCs or the RFP, please contact Elizabeth Leef at 202-207-0334 or Elizabeth@ncil.org.

3) State News

Nursing Home Residents Sue for At-Home Care

Florida, Source: Tampabay.com

Since a stroke four years ago, 66-year-old Bud Lee can't lift himself out of bed, or take himself to the bathroom. He'd like to regain a bit of his old independence.

John Boyd, 50, has been paralyzed since 14. He would like an apartment of his own and a job, like when he answered customer service phones for Red Lobster a few years back. Instead, both men live in nursing homes, a frequent venue when Florida Medicaid pays the bills.

That may change. Lee, Boyd and five other nursing home residents backed by the AARP Foundation have filed a class-action lawsuit against Florida under the Americans with Disabilities Act, citing a 1999 court ruling that helped spring mentally ill people from big, impersonal hospitals.

Plaintiffs in the nursing home case say they are in the same boat. They could live more cheaply in home-like settings, they say, if only the state would shed its bias toward institutions.

What's next?

The U.S. District Court in Tallahassee must decide whether a class-action suit is proper and whether these seven named plaintiffs have standing to sue and can represent all Medicaid recipients with disabilities who might be inappropriately living in nursing homes. A full trial may take 18 months to two years. Read Article in full.

Tiahrt Addresses Variety of Issues, Including CCA

El Dorado, Kansas, Source: El Dorado Times

On his second week of congressional recess, Rep. Todd Tiahrt made stops in El Dorado, Augusta and Haysville Monday, looking to constituents to get a feel for the issues that matter most to the citizens he represents.

"Let me just tell you a little bit about what's going on in Washington," Tiahrt said, as he outlined some of the high points of the 110th Congress.

Tiahrt told the 40 or so people gathered in Double D's about the $2.9 trillion U.S. budget being outlined for fiscal year 2009.

About two-thirds of the money, he said, goes toward social security, Medicare, Medicaid and interest on the national debt. One-third of the budget falls under discretionary spending guidelines, money that goes toward defense, transportation, education, environment and "all those other things the federal government does."

…"Those committees try to decide some priorities within that spending," he said.
Tiahrt sits on the appropriations committee, which "in a sense writes the checks" for discretionary spending. He also sits on the defense and interior sub-committees.

"I spend most of my time either as the ranking member of the interior sub-committee or in defense ranks," Tiahrt said. "I'm also on the intelligence committee and that's had a lot of activity since the global war on terror started on September 11."

He then turned his ear to the crowd, looking for feedback on local issues. Many spoke out on the issue of illegal immigration, but some had other issues they wanted to discuss.

An employee of the Resource Center for Independent Living in El Dorado who advocates for American Disabled for American Public Transit (ADAPT) asked if Tiahrt planned to sign the Community Choice Act, which would "establish a national program of community-based attendant services and supports for people with disabilities, regardless of age or disability."

"This may be a very good piece of legislation, I'm anxious to find out about it and I thank you for bringing it up," Tiahrt said. "There's about 8,000 variations of legislation every two years. I can't keep them all straight in my mind. It takes people like you to make sure stuff like this gets my attention." Read the article in full.

4) Announcements

HUD Funding Notice

On March 19th, the Department of Housing and Urban Development (HUD) published the general provisions of its FY 2008 Super Notice of Funding Availability (SuperNOFA), which describes the general rules prospective grantees must follow. The 2008 SuperNOFA contains program application information (including information on applying for grants under the Section 811 Supportive Housing for Persons with Disabilities program) and is expected to be released next month. The March 19th document is available online.

Forum to Preview Frontline on Health Care Systems Around the World

It is common knowledge that the United States is the only industrialized country that does not provide universal coverage. Possibly less well known is that all higher income countries face similar challenges in trying to stem the rising cost of health care driven by new medical technologies, make better use of medical evidence in clinical practice, respond to an aging population, and improve quality of care. How countries around the world address these issues - and how they have evolved to the health systems they have today - may be instructive as a new President and Congress tackle changes to the U.S. health system.

In order to help shine a light on what may be learned from health care systems in other advanced capitalist democracies - the United Kingdom, Germany, Japan, Switzerland and Taiwan - the Kaiser Family Foundation will host a forum featuring Washington Post correspondent, T.R. Reid's FRONTLINE production, "Sick Around the World". Diane Rowland, Kaiser's executive vice president, will provide opening comments, and the forum will feature commentary from T.R. Reid and clips from the film.

T.R. Reid undertook the research and reporting on which "Sick Around the World" is based while he was a 2007 Kaiser Media Fellow. Sick Around the World will air on PBS stations on Tuesday, April 15 at 9:00 p.m. ET and will be available online.

WHEN: Tuesday, April 15 at 12-noon ET. Lunch will be served promptly at noon.

WHERE: The event will take place in the Foundation's Barbara Jordan Conference Center at 1330 G Street, NW, Washington, D.C.

RSVP: To attend, contact Sarah Williams Kingsley at (650) 854-9400.

2008 ADA Symposium

The National ADA Symposium is a three day conference on the Americans with Disabilities Act and related disability laws that has earned the reputation as the most comprehensive event available on the ADA.

May 12-14, 2008

America's Center, St. Louis, Missouri

The DBTAC-ADA Centers are proud to announce that Symposium attendees will have the unique opportunity to participate in a U.S. Access Board town meeting. The Access Board holds bi-annual town meetings in cities throughout the United States to receive feedback and recommendations on accessibility issues. This year, the Access Board will hold its town meeting in conjunction with the National ADA Symposium. The focus of the meeting will be airport access.

Please visit the ADA Symposium website for more information, session schedule and descriptions, and on-line registration. The National ADA Symposium is sponsored by the Network of DBTAC-ADA Centers.

SEANLKELLY

NCIL WEEKLY ADVOCACY MONITOR (WhAM) 04-07-08

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Posts: 209

04/08/08 22:14:18

Weekly Advocacy Monitor

WhAM!

Volume 6, Issue 13 April 7, 2008

1) What's Happening in the Nation's Capital?. 2

2) National News. 3

House Science Committee Investigates CDC Formaldehyde Research and FEMA Response 3

Federal Court Holds Individual Entitled to State Payment of Full-Time Home Care. 3

Medicaid Rules Faulted at Energy and Commerce Hearing. 5

Kennedy, Domenici work on Parity Compromise; NYT Readers Wax Philosophical on Practical Issue 6

Medicare Acts to Reduce the Number of Yearly Drug Plan Reassignments Among Low-Income Beneficiaries 8

3) State News. 8

Taxi Commission Acts to Bring First Accessible Taxis to District 8

4) Announcements. 9

NYLN Hosts National Teleconference, "Many Voices, One Vote!" 9

NIDRR and Partners Release Resource Guide on Emergency Management 10

Autistic Self Advocacy Network Announces Launch of International Chapter 10

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

Source: CQ Budget Tracker

Hearings on the future of Iraq are plentiful next week, several of which feature testimony by both the U.S. Ambassador to Iraq and Gen. David Petraeus. Secretary of Defense Robert Gates and Joint Chiefs of Staff Chairman Michael Mullen will appear before the Senate Armed Services Committee to talk about future U.S. involvement in Iraq.

Appropriations hearings continue next week, with Secretary of State Condoleezza Rice, Attorney General Michael Mukasey and Secretary of Agriculture Ed Schafer all making appearances before different panels to talk about the funding needs of their departments.

A "Who's Who" of economists and budget experts Wednesday expressed frustration with what they called a failure of the political establishment to address future fiscal problems that will be caused by expanding "entitlements".

Numerous panel members said the public and politicians aren't responding because, unlike the current housing credit crisis, the problem is not immediate and won't manifest itself until years down the road. Congressional Budget Office Director Orszag questioned whether an alternative approach is needed to complement the current message, focusing on dramatic inefficiencies that exist in the healthcare system

The (very conservative) Heritage Foundation's Stuart Butler said it is critical to continue educating the public about fiscal problems so policymakers can "get public permission to act." A regular participant in the Fiscal Wake Up Tour, he told the audience at the subsequent CRFB dinner that the foundation "is going to be like no foundation you've ever seen before" and would "focus on educating, activating, and stimulating action." "Stay tuned," he said.

Not all budget forum panelists supported proposals for a fiscal commission or task force to recommend comprehensive solutions that Congress could vote on, similar to a military base closing commission, with former lawmaker Kolbe raising questions. "We're talking not about the selection of what physical infrastructure in the Defense Department should be closed . . . we're talking about reordering the entire economy." Kolbe also said that having some commission present a comprehensive recommendation and requiring a single up-or-down vote by Congress raised Constitutional questions and "is a very frightening thought in many ways."

In both the House and Senate, in several Committees and Subcommittees, legislators will hold hearings on the current credit and financial crisis. A House Ways and Means Panel will look at extending unemployment benefits due to the current state of the economy. The Senate Transportation-HUD Subcommittee will hold a hearing on the Federal Housing Authority's role in addressing the housing crisis. The Senate Banking, Housing and Urban Affairs Committee will hold a hearing on proposals to mitigate foreclosures and restore liquidity to the mortgage markets.

Chairman Christopher Dodd and the Committee's ranking Republican, Richard Shelby, were given a deadline of midday Wednesday to devise a compromise to offer as a substitute amendment to current housing legislation. Speaker Nancy Pelosi called publicly for a White House summit on the economy with House and Senate Democrats and Republicans.

NCIL WEEKLY ADVOCACY MONITOR (WhAM)

NCIL WEEKLY ADVOCACY MONITOR (WhAM)

Final 2008 Funding Bill Cuts IL 1.74%

NCD Public Quarterly Meeting Coincides with SILC Congress 2008

CCA to be Heard in the House January 16th, 2008

MFP Rebalancing Demonstration Stakeholder Teleconference

ADA Restoration Act Hearing January 29th

National Disability Policy: A Progress Report

Heritage Foundation Releases Blatant Misrepresentation of ADA Restoration; Fox News Tows Line, Manipulates America's Best Intentions

4) Additional Resources

IL Funding Sample Letter and Talking Points

Felony Charges Filed In Documented Abuse Incident

3) State News

3) State News

AFGE, Women's and Fair Practices Survey for Workers with Disabilities

4) Announcements

3) State News

West Virginia 'Lunatic Asylum' Angers Advocates

Benefits to Work Calculator Upgraded

3) State News

Nursing Home Residents Sue for At-Home Care

CCA to be Heard in the House January 16^th, 2008

ADA Restoration Act Hearing January 29^th