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

NCIL Disability Policy Summit

NCIL Congressional Policy Briefing and Hill Visits

2) National News

Community Choice Act 2009 - Like Wings On An Eagle: Our Time Has Come!

Senate Finance Subcommittee Hearing on the Role of Long-Term Care in Health Care Reform

Ending the Medicare Disability Waiting Period Act of 2009 Introduced!

Vice President Biden Announces $250 Recovery Payments to Go to Social Security and SSI Beneficiaries in May

Congress Reintroduced to CLASS Act

3) Announcements and Additional Resources

NCIL Needs Your Input Regarding Veterans Issues in Order to Pursue IL Funding

Disability Scoop: Kareem Dale, Top White House Aide, Talks Disability Policy

NCD Hosts Teleconference on Two Recent Reports, NCIL Policy Analyst Elizabeth Leef Scheduled to Speak

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

NCIL Disability Policy Summit

Last Monday, March 23, NCIL held a Disability Policy Summit in Washington DC. Representatives from 22 national disability organizations attended. The NCIL Board presented our 2009 Legislative and Advocacy Priorities. "The meeting provided a great opportunity for organizations to share their legislative priorities and engage in dialogue to continue collaboration" said John Lancaster.

NCIL Congressional Policy Briefing and Hill Visits

On Tuesday, March 24th, NCIL held its 3rd annual Congressional Policy Briefing in the Senate Russell Building. Senator Tom Harkin (D-IA) was introduced by Dawn Francis, Executive Director of the Iowa SILC. The Senator kicked off our event by welcoming everyone and inviting us all to the re-introduction of the Community Choice Act. Tim Sheehan of Wisconsin gave an overview of CILs and SILCs, Jeff Hughes spoke about the Reauthorization of the Rehab Act, and Lou Ann Kibbee talked about the Community Choice Act. Several Congressional staff attended and our Policy Priorities Booklet was ditributed to all.

Later that day, NCIL Policy Fellow Jason Beloungy had the privilege to attend a meeting with NCIL Board President Kelly Buckland, NCIL Board Member Tim Sheehan and Kelly's wife and son, Merle and Rodney. They attended scheduled meeting with the Chairman of the House Appropriations Committee, David Obey (D-WI) to talk about concerns with RSA not releasing information or funds related to the American Recovery and Reinvestment Act for the IL Program, as well as the 2010 Budget process. The meeting was very positive, and the delegation felt good about what had been discussed in this face-to-face meeting with the Chairman in his U.S. Capitol Office. The Chairman of the House Appropriations Committee is one of the most powerful members of Congress, and to get a personal meeting with him in his Capitol office is a very rare opportunity. Jason described the very memorable experience, "The Chairman's office is located next to the office of the Speaker of the House, and is not part of the Capitol Tour. Once inside the office, you had one of the best views. The view overlooked the National Mall and right at the Washington Monument. All of us in the room felt that this was an exceptional moment that none will likely forget."

Jeff Hughes and NCIL staff Elizabeth Leef met with the lead staff person for Representative George Miller (D-CA), Chairman of the House Energy and Labor Committee, who is working on the Reauthorization of the Rehab Act. Recent events regarding RSA and the stimulus funds were discussed. NCIL Board members Mary Margaret Moore and Steve Higgins attended a meeting with the lead staff person for Senator Ted Kennedy (D-MA), responsible for the Reauthorization of the Rehab Act on the Senate side. The Senate will be working from the old Senate version of Reauthorization and the House wants to start from scratch. NCIL will keep the membership informed and up-to-date as we learn more. NCIL will outreach to the membership for input on Reauthorization.

Board members Jeff Hughes and Carla Lawson met with Senator Colburn's staff and discussed recent events with RSA. The Senator's staff will be contacting RSA on behalf of NCIL to see why IL funds are being held up.

Congressional visits included the offices of Senators Lincoln (D-AR), Casey (D-PA), Hagan (D-NC), Roberts (R-KS), Murkowski (R-AK), Hatch (D-UT), Udall (D-CO), and Bennet (D-CO). House visits included Representatives Tiahrt (R-KS), Jenkins (R-KS), Moore (D-KS), Chairman David Obey (D-WI), Moran (R-KS), Miller (D-NC), Tierney (D-MA) and Chairman Miller (D-CA).

2) National News

Community Choice Act 2009 - Like Wings On An Eagle: Our Time Has Come!

Following the NCIL Congressional Briefing, a press conference was held in the Senate Dirksen Building, and the Community Choice Act of 2009 was introduced. Mike Oxford of Kansas ADAPT moderated the event, where Senator Tom Harkin and Congressman Danny Davis announced that they have introduced the Community Choice Act in the 111th Congress.

Our community showed up in force, filling the hearing room and the hallways outside. Disability Rights activists from across the country participated in person and by phone from over 100 sites nationally. Speakers included NCIL Executive Director John Lancaster, Dawn Russell of ADAPT, Andy Imparato of the AAPD, Marty Ford of the Coalition of Citizens with Disabilities (CCD), Victor Robinson of Self Advocates Becoming Empowered (SABE), and Mitch LaPlante, Researcher at the University of California, San Francisco.

After Mike Oxford warmed up the crowd, Senator Harkin gave a rousing speech, emphasizing that "Our time has come". He praised President Obama for his support of the CCA and vowed that will pass this year, either as part of broader healthcare reform or as independent legislation. Representative Danny Davis then spoke about the pride he felt being connected to the Community Choice Act and said that the best advocates in the country are people with disabilities. He praised Harkin for his tireless efforts, and quoted a Bible passage that emphasized Harkin's continued efforts to pass the CCA over the past 17 years; "Those that wait… shall renew their strength. They will mount up, like the wings on an eagle…" he said.

John Lancaster testified that NCIL was there to collaborate in solidarity with everyone who was there to support the CCA. He said that the CCA is clearly one of the most, if not the most, important issue in our community. Many NCIL Governing Board members and people representing Centers for Independent Living were present at the hearing. Those Board members not present were at that very moment visiting their Congressional representatives, pushing for passage of the Community Choice Act.

John testified passionately, "I want you folks to know that we are working this and we will work it with you. I was struck by Mitch's comment about CBO's previous fear about people coming out of the woodwork to get benefits under the Community Choice Act. That's such poppycock and we all know it. How many people are going to come out of the woodwork to have someone help them go to the toilet or to pull on their underwear or to get in bed. Come on, let's be real here. These are very personal services, which for some people are essential for them to participate fully in the community and even have a chance for a job and be productive, contributing members of their communities and of our great American society. And it's a darn shame that people have to check themselves into a nursing home or a state institution just so that they can get the basic supports that they need to exist with no control anymore over when and how those services are delivered, no choice over who is delivering them. This is a matter of basic human dignity as well as rights. And it's time for the status quo to end!"

Dawn Russell of ADAPT testified that the CCA is the most important bipartisan disability rights legislation of our time and that it must continue to be a top priority for Harkin, Davis, and our community as a whole. "We have a window of opportunity; now a fresh breeze of hope and change are blowing through it! ...Pick up you tool of choice and get to work!". Marty Ford of the CCD testified that the institutional bias continues and waiting lists for community services continue to impede independent living. She noted that people with disabilities need to be included in healthcare reform and that the CCA is the solution and now is the time. Mitch LaPlante of the USCSF testified about his research; outlining the need for the CCA to be rescored by the Congressional Budget Office and the realistic cost of the bill. He agreed with Senator Harkin that this national problem needs a national solution. Victor Robinson of SABE announced the organization's support of the CCA and offered a personal account of the need for the legislation. "Why do people have to wait so long just to live in the community, close to their family and friends? We must change that, and we will!" Andy Imparato testified to the civil rights aspect of the CAA, and said that the promises of the ADA, Independent Living, and the ADA Amendments Act could never be a true reality without the CCA.

Watch a video (captioned). If the video does not load, visit http://www.tvworldwide.com/events/cca_intro/090324/.

Senate Finance Subcommittee Hearing on the Role of Long-Term Care in Health Care Reform

On Wednesday, March 25th, the Senate Finance Subcommittee on Health had a hearing to look at the role of Long-Term Care in Health Care Reform. Jason Beloungy, NCIL Healthcare Policy Fellow, attended the hearing along with a large group from ADAPT and many other interested people. The witnesses called to testify included: Judy Feder, PhD., Senior Fellow, Center for American Progress Action Fund (testimony PDF); Raymond C. Scheppach, PhD., Executive Director, National Governors Association (testimony PDF); Dennis G. Smith, Senior Research Fellow in Health Care Reform, The Heritage Foundation (testimony PDF); Joshua M. Wiener, PhD., Senior Fellow, RTI International (testimony PDF).

There was a lot of terrific discussion that brought many issues that impact people with disabilities into the mainstream discussion about healthcare reform. Dr. Feder listed a few options to incorporate LTC into health reform including broadening Medical Assistance support for Home and Community Based Services (HCBS). She specifically cited the Community Choice Act, which drew cheers from the audience. She felt that it was necessary to improve service delivery for dual eligible beneficiaries and improve payment methods for services. She also suggested phasing in a new Long-Term Care Insurance program into the Medicare benefit. Finally, Dr. Feder discussed the creation of a voluntary public long-term care insurance program, such as the CLASS Act.

Another highlight of the hearing came from an unlikely source. Dennis Smith, who is now with the conservative think tank the Heritage Foundation, was the former CMS Director of the Center for Medicaid and State Operations. Many advocates in the disability community were at odds with the actions of Mr. Smith during his tenure at CMS. However, in his testimony at the hearing he sounded like an ally. Mr. Smith first made clear that his testimony was not representative of his current or former employer. He then talked about some recommendations he felt were important for including long-term care into healthcare reform.

His first recommendation was to reorganize Medicaid so that it levels the playing field, so that institutionalization is not a mandate and HCBS an option. To further his point, Mr. Smith stated that a new agency should be created to focus on the needs of people with disabilities. Mr. Smith also talked about his idea of "Life Accounts" that could be used for purchasing services for independent living.

The final witness to speak, Dr. Weiner, also referenced the Community Choice Act and CLASS ACT as viable methods to access home and community based services.

Finally, while discussing healthcare for people with disabilities, Chairman Rockefeller asked if any of the members of ADAPT who were in attendance wished to comment. Chris Hilderbrandt came to the witness table and answered some questions from the Chairman, and talked about healthcare concerns and the need for supports in order to have quality care in the community.

Ending the Medicare Disability Waiting Period Act of 2009 Introduced!

S. 700 and H.R. 1708 would eliminate the unjustifiable two-year delay in coverage for people with significant disabilities who are waiting to become eligible for Medicare coverage. Nearly 40% of people with disabilities are without health insurance at some point during their wait for Medicare, and 24% for the duration. Many cannot afford to pay COBRA premiums to maintain coverage from their former employer, and private coverage on the individual market is unavailable or too expensive for this high-cost population. As in the 110th Session of Congress, NCIL strongly supports this much needed legislation.

Vice President Biden Announces $250 Recovery Payments to Go to Social Security and SSI Beneficiaries in May

Vice President Joe Biden and Michael J. Astrue, Commissioner of Social Security, announced that the federal government will send out a onetime payment of $250 in economic recovery payments to all people who receive Social Security and Supplemental Security Income (SSI) benefits beginning in early May 2009 and continuing throughout the month except for those receiving Medicaid in care facilities. No action is required to get the payment, the economic recovery payments will be sent separately from the person's regular monthly payment. To receive the payment, the individual must be eligible for Social Security or SSI during the months of November 2008, December 2008 or January 2009. The legislation also provides for a one-time payment to Veterans Affairs (VA) and Railroad Retirement Board (RRB) beneficiaries. If someone receives Social Security and SSI, VA or RRB benefits, he or she will receive only one $250 payment. People getting Social Security or SSI should not contact the agency unless a payment is not received by June 4, 2009. For more detailed information about the $250 one-time economic recovery payments, go to www.socialsecurity.gov/payment. To learn more about the American Recovery and Reinvestment Act of 2009, go to www.recovery.gov.

Congress Reintroduced to CLASS Act

Source: www.thelongtermcaresolution.org

Earlier today, Sen. Edward Kennedy (D-MA) and Reps. Frank Pallone (D-NJ) and John Dingell (D-MI) reintroduced the Community Living Assistance Services and Supports (CLASS) Act of 2009, which would create an insurance program for adults who become functionally disabled.

...The bill would create a national insurance trust, which would provide a cash benefit to help obtain services and supports. That cash benefit would allow those with disabilities to have more choices and opportunities in how and where they choose to live.

"As America continues to age, we are faced with an impending crisis in long-term care that has been ignored for too long," Pallone said in a release. "As we work to reform our health care system, we must not forget those Americans in need of community services. The CLASS Act offers a new approach that is smart and compassionate. It will give those with functional disabilities the means to maintain their lifestyles, to stay with their families and to remain productive members of their communities."

The insurance trust would be financed by voluntary payroll deductions. A person 18 years or older would be qualified to receive benefits after five years of contribution to the program. Under the measure, all working adults would be automatically enrolled in the program, unless they choose to opt out.

"The bill we propose is a long overdue effort to offer greater dignity, greater hope, and greater opportunity," Kennedy said. "It makes a simple pact with all Americans - 'If you work hard and contribute, society will take care of you when you fall on hard times."

3) Announcements and Additional Resources

NCIL Needs Your Input Regarding Veterans Issues in Order to Pursue IL Funding

Steve Thovson, Chair of the NCIL Veterans Subcommittee, hereby requests information from the NCIL membership about CIL services to veterans. The Subcommittee is working on a strategy NCIL can use to seek funding for CILs to serve veterans through outreach, direct services, etc. As part of that process we need to know:

• more about CILs' work with veterans around the country (please include a brief description of your work and the number of people served, if available);
  
  
• if you are contracting for services with the Veterans Administration (VA), we would like to learn about what you are doing, including your experiences trying to become a subcontractor with companies who have been awarded contracts to provide services for the VA.

Please email Steve at: steve@swcil.com. Thanks for your assistance!

Disability Scoop: Kareem Dale, Top White House Aide, Talks Disability Policy

Source: Disability Scoop, by Michelle Diament

In February Vice President Joe Biden announced the selection of Kareem Dale as the first ever special assistant to the president for disability policy. Now, in an exclusive interview with Disability Scoop, Dale defends the president following his misstep on The Tonight Show last week and talks about what's next in the administration's plans for people with disabilities. Read the Interview.

NCD Hosts Teleconference on Two Recent Reports, NCIL Policy Analyst Elizabeth Leef Scheduled to Speak

In response to numerous requests, NCD has arranged for telephone access for those who would like to listen to the release proceedings of two important NCD reports on March 31, 2009, at the NCD quarterly meeting in Washington. The toll-free, call-in, listen-only number for each event is 888-790-6568, and the pass code is "NCD Meeting."

The two releases are:

• Federal Employment of People with Disabilities (An evaluation of the employment of people with disabilities within the Federal Government): 10:15 a.m. EDT - 11:00 a.m. EDT. Speaker: Susan Parker, Director of Policy Development, Office of Disability Employment Policy, US Department of Labor; and
  
  
• National Disability Policy: A Progress Report (This is the mandated report to the President and Congress prepared by the Council which includes 17 recommendations): 3:45 p.m. EDT - 5:00 p.m. EDT. Speakers: Elizabeth Leef, Policy Analyst, National Council on Independent Living; John D. Kemp, Principal, Powers, Pyles, Sutter & Verville; Peter Thomas, Principal, Powers, Pyles, Sutter & Verville and Co-Chair of the Consortium for Citizens with Disabilities Health Task Force.

Specific times are also designated to receive public comment, supported by a toll-free call-in line, and input is encouraged and greatly appreciated. Individuals or organizations can also provide written comments by e-mail, fax, or mail. Public comment sessions will be held Monday, March 30 from 11:30 a.m. until noon EDT, and on Tuesday, March 31 from 1 p.m. until 1:30 p.m. EDT. The reports will be posted prior to each release at http://www.ncd.gov/newsroom/publications/index.htm.

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

NCIL Submits Oral and Written Statement Concerning the Reauthorization of the Workforce Investment Act

NCIL Executive Director to Meet with White House Staff

2) National News

Be a Part of Change - Meet with Members of Congress While They are Home on Break!

RSA Webinar for SILCs and State VR Directors on ARRA Funds for the IL Part B Program

Obama Sets Up Formal Office for Healthcare Reform

3) State News

Silicon Valley ILC Takes Lead on "Psycho Donuts"

4) Announcements and Additional Resources

2009 ADAPT FUN*RUN Update

KASA's New Pocket Guide: How to be Involved in a Board or Council

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

NCIL Submits Oral and Written Statement Concerning the Reauthorization of the Workforce Investment Act

On Tuesday, April 7, NCIL Policy Staff Jason Beloungy and Elizabeth Leef attended a listening session held by the Senate Health, Education, Labor and Pensions (HELP) Committee to discuss specific areas of the reauthorization of WIA.

The listening session addressed areas of Title I of WIA, including people with disabilities, low skill, limited English, ex-offender, older worker and other relevant "populations" and national programs. The purpose of the listening session was to hear stakeholder comments regarding adult populations served under Title I of WIA. Jason Beloungy presented an oral statement to the Subcommittee regarding the following areas:

• WIA One-Stop Centers must be physically and programmatically accessible;
• Transportation must be addressed for people with disabilities to access One-Stop Centers; and
• Increased participation of people with disabilities on Workforce Investment Boards at the state and local levels.

In addition to the oral statement, NCIL submitted a written statement of recommendations to the committee. For additional questions regarding the listening session or the submitted statement, contact Jason at the NCIL office or by e-mail at: jason@ncil.org.

NCIL Executive Director to Meet with White House Staff

On April 15th, NCIL's Executive Director, John Lancaster, will meet with Kareem Dale, Special Assistant to the President for Disability Policy, and other White House staff for a meeting and briefing related to disability issues. The WhAM! will report to members about this meeting in next week's edition.

2) National News

Be a Part of Change - Meet with Members of Congress While They are Home on Break!

Members of Congress are back in their districts for the spring recess. As we noted in last week'sedition, we are strongly encouraging our members to get out and meet with members of Congress while they hold listening sessions, town-hall meetings, local office hours and other events to see what constituents are concerned about. NCIL has made it easier for you to talk to your members of Congress in the House and Senate by providing our updated Policy Booklet. The Community Choice Act and the CLASS Act are the two bills that are getting our attention. In addition to those bills, we are also bringing the issues that affect people with disabilities to the table in the healthcare reform talks.

If you have the opportunity to meet with a member of Congress, please talk about our issues! It is grassroots efforts like these that strengthen NCIL's ability to be successful here in Washington. If you know of an event that you'd like to attend, but would like to be better prepared, feel free to call or e-mail the Policy Staff at NCIL. Jason and Elizabeth would be happy to help you with your message, talking points or to better understand the issues in the Policy Booklet.

Finally, if you do have the opportunity to meet with a member of Congress in your area, please call or e-mail NCIL to let us know what you talked about and if the member had additional questions or wanted follow up by NCIL. You can reach Jason and Elizabeth by phone at the NCIL office, or by e-mail at: jason@ncil.org and elizabeth@ncil.org.

RSA Webinar for SILCs and State VR Directors on ARRA Funds for the IL Part B Program

Source: RSA

Dear State Director, SILC Chair, SILC Member, and SILC Staff:

RSA will conduct two consecutive webinars for State Independent Living (SILC) Chairs, SILC members, SILC staff, and State VR Directors on Thursday, April 16th. The first session is scheduled from 1:00 - 2:30 (EST) and the second from 3:00 - 4:30 (EST). The purpose of the webinar is to:

• review the Department's guidance for the American Recovery and Reinvestment Act (ARRA) funding for the State IL Services program (IL Part B) program;
  
  
• respond to questions; and
  
  
• provide an opportunity for webinar participants to share ideas about innovative uses for the ARRA funds consistent with the principles outlined in the Fact Sheets and Guidance at http://www.ed.gov/policy/gen/leg/recovery/index.html.

We strongly encourage you to submit your questions prior to the webinar at RSARecoveryActComments@ed.gov. If you are unable to participate in the webinar, you may still submit your questions and review responses on the archived session. In the event you cannot participate and your questions are not addressed in the archived session, we will provide additional opportunities to respond to your questions.

One of the important roles that RSA envisions for itself in the ARRA initiative is to promote the sharing of innovative ideas among recipients of ARRA funds. We hope that many webinar participants will be prepared to share any innovative uses for the ARRA funds that their state is considering.

Due to the high interest in obtaining information about ARRA funds for the VR and IL programs, and the fact that there is a 100 call-in line limit to participate in the webinars, we will be holding a number of webinars for partners and stakeholders, including State VR Directors, State Rehabilitation Councils, and Statewide Independent Living Councils, in order to provide adequate access to all.

We encourage you to register without delay, and we request that you join in on the same line in order to maximize participation. The webinar will be available in archive format the following day at the same link. Having the webinars in accessible archives will allow not only participants who are unable to participate to hear the discussion, but also allow all parties to hear other parties' questions and suggestions.

To register for the TA seminar, please click on the link for the session that is most convenient for you and follow the registration instructions:

• 1:00 session - http://ncrtm.org/mod/resource/view.php?id=1522
  
  
• 3:00 session - http://ncrtm.org/mod/resource/view.php?id=1536

If you need assistance with registration for the webinar, please contact Terry Martin at terrence.martin@ed.gov or at (202) 245-7275. Thank you.

Sue Rankin-White, Chief, Technical Assistance Unit

Obama Sets Up Formal Office for Healthcare Reform

Source: Reuters, by Maggie Fox

President Barack Obama set up an executive office for healthcare reform at the White House on Wednesday, saying the overhaul was one of the biggest priorities for the first year of his presidency. Obama issued an executive order that says the U.S. healthcare system "suffers from serious and pervasive problems."

The White House Office of Health Reform (Health Reform Office) will help the executive branch steer "the federal government's comprehensive effort to improve access to health care, the quality of such care, and the sustainability of the health care system," the order reads. It also says the Secretary of Health and Human Services will create an Office of Health Reform to work with the White House office.

Obama has nominated former Clinton administration health official Nancy-Ann DeParle to lead the White House office. His nominee for Health and Human Services secretary is Kansas Governor Kathleen Sebelius. The new office will help ensure that policymakers across the executive branch work toward Obama's healthcare agenda, the order reads.

U.S. government economists predict that public and private health spending will hit $2.5 trillion this year, taking up a 17.6 percent share of gross domestic product. Yet studies suggest Americans get poorer care than people in other industrialized countries that have national healthcare plans, and 46 million Americans have no health insurance at all.

3) State News

Silicon Valley ILC Takes Lead on "Psycho Donuts"

Sarah Triano is the executive director of the Silicon Valley Independent Living Center. In addition to the following letter, Ms. Triano testified at a recent hearing. Supporters of this letter include Parents Helping Parents, Council on Aging Silicon Valley, Santa Clara County IHSS Advisory Board, Sensory Access Foundation and Services for Brain Injury.

Source: Mercury News

"Nothing funny about donut shop's theme: The recent article by Chris Vongsarath ("Psycho Donuts is a wild and crazy place," March 13) describes the ambiance of a new donut shop as "somewhere between classic Americana and completely insane." The store capitalizes on the theme of a "fun mental institution," complete with a padded cell where kids can take photos while wearing a straitjacket, a "group therapy" area, employees dressed in medical garb, and donuts named after psychiatric disabilities, such as Massive Brain Trauma.

One might dismiss this donut shop as a harmless venture by young entrepreneurs trying to find a hook in a bad economy, but the ongoing discrimination and stigmatizing of people with mental disabilities in the U.S. and globally puts a much darker cast on this questionable enterprise.

People with psychiatric diagnoses and intellectual disabilities experience daily discrimination, unnecessary institutionalization and marginalization. Groups like Mental Disability Rights International have documented widespread human rights violations, such as the ongoing practice of painful and dangerous electroshock treatment, the large numbers of deaths in mental institutions and horrendous conditions in isolation cells. How can one justify making a profit at the expense of the dignity and human rights of other human beings?

We in the disability community recognize that great strides have been made, such as the passage of the Mental Health Parity Act in 2008; however, enforcement of the human rights and civil liberties of people with disabilities remains a pressing global concern, evidenced by the United Nation's recent adoption of the Convention for the Rights of Persons with Disabilities, and the United States' failure to sign on to the treaty.

It might feel like a great leap from the United Nations to the Psycho Donut Shop, but consider if the donut shop mocked ethnic minorities, religious groups, the plight of people without homes or people with terminal illnesses. Wouldn't we all be outraged? Human rights are inherent to all human beings; we cannot afford to let the thoughtless actions of some erode the rights of others to live with respect and dignity."

Sarah Triano, San Jose

4) Announcements and Additional Resources

2009 ADAPT FUN*RUN Update

Source: ADAPT

ADAPT is continuing its advocacy in 2009 to reverse the institutional bias in the Medicaid long term care system so no person is forced into nursing homes or institutions for people, young or old, with physical, developmental or mental disabilities. Though we are a grassroots organization this effort will take funding to sustain our actions and activities. We want your assistance in raising this money.

ADAPT will be hosting a FUN RUN for Disability Rights in Washington, DC on Sunday, April 26th. ADAPT frequently chants "FREE OUR PEOPLE!" at our Actions. With your help we can make that chant become a reality for thousands of people with disabilities throughout the US. All donations are tax deductible and will be used to advance the ADAPT disability rights agenda.

ADAPT is honored to announce that Lois Curtis, surviving plaintiff in the Olmstead Decision will be in Washington DC on April 26th, to celebrate the ten year anniversary of this landmark decision. Ms. Curtis will be participating in both the kick-off celebration, 2009 FUN*RUN, and the closing celebration in her home city, Atlanta, Georgia in mid-October.

We appreciate your support in helping to uphold the law that Lois and Elaine fought so hard to pass. To donate to Lois, the advocacy of ADAPT and the foundation of her choice click on the link below and making a tax-deductible pledge for every lap completed. Sponsor Lois now! View Lois's artist brochure (PDF).

Sign-up to be a FUN*RUNNER: www.adaptfunrun.org. For information: 512/442-0252. Ask a Question / Comment.

For an Institution Free America, The ADAPT Community

KASA's New Pocket Guide: How to be Involved in a Board or Council

The pocket guide "How to be Involved in a Board or Council: Roles and Responsibilities" covers: why youth should get involved in their community, questions to ask the board/council, skills and/or attitudes needed to serve on a board/council, roles and responsibilities, how to be prepared, tips to deal with what might be hard, suggestions for working with adults, and many other resources.

Written by youth who have served on boards and councils successfully this 24 page pocket guide will give young people interested in getting more involved in their community the information they need! This pocket guide was developed as a result of direct feedback to our KASA Youth as Leaders manual; A "How-To" Manual on including youth as leaders in your organization, agency or project. Projects and agencies using this manual to include youth in their leadership bodies requested a companion guide for youth. So if you are using the KASA Youth as Leaders manual, this pocket guide is for you!

To order the pocket guide by mail, use the attached form or order online by visiting: http://www.familyvoices.org/catalog.php (scroll down to under "what's new" to find the pocket guide).

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

Countdown to 2009 NCIL Annual Conference

ADAPT Hits DC, Demands Long Term Care Be Included in Healthcare Reform

NCIL Opposes Obama Nominee to the Maryland Seat of the Fourth Circuit Court of Appeals

2) National News

The Budget is Coming! The Budget is Coming!

Governor Kathleen Sebelius Recommended for HHS Secretary by Senate Finance Committee

Petition to Help End Discrimination Against People with Autism

3) State News

Another Child with a Disability Murdered by Neglect; Motive: Welfare Fraud

4) Announcements and Additional Resources

Google Lime Scholarship for Students with Disabilities

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

Countdown to 2009 NCIL Annual Conference

The countdown is on! Next month NCIL will host our 2009 Annual Conference "Believe: We Are Better. Reenergize, Reorganize, Reauthorize!"

The NCIL staff is busy putting together the policy booklets and preparing for advocates to hit the Hill in early June. This year, NCIL policy staff has been tightly focused on the American Recovery & Reinvestment Act, which included funding for Centers for Independent Living. This is a new year for the Independent Living Program, which is used to scraping by. We have the opportunity to change our communities and free our people from institutions.

Other hot issues include the healthcare reform debate. NCIL is working diligently on the passage of the Community Choice Act. Push back is coming from the Governors and the State Medicaid Directors. Contact your Governor and the Medicaid Director and let them know the CCA is good for people and the nation as a whole. We have scientific research stating states will save Medicaid dollars by allowing money to follow the person into the community to receive long term care services. The time is now to include Community Choice Act in healthcare reform! 10 ADAPT members met today with Obama's Health Care Czar Nancy Ann DeParle. She stated long term care would NOT be included in healthcare reform. Focus needs to be paid to our Governors and Medicaid State Directors!

The aging community is out in force acquiring additional funding to provide services to the aging and people with disabilities. In order for Independent Living to obtain recognition for all the work they do, Centers must develop a relationship with their State Unit on Aging. For more information on ADRCs contact Elizabeth Leef at the NCIL office 202-207-0334 or email elizabeth@ncil.org.

ADAPT Hits DC, Demands Long Term Care Be Included in Healthcare Reform

Source: ADAPT

500 ADAPT activists from throughout the US, including 50 Texans, lined up outside the Whitehouse calling for President Obama to include the Community Choice Act and long term services and supports in his health care reform proposals.
10 ADAPT activists met with Obama Health Care Czar Nancy Ann DeParle.

At about 2:00pm 100 people were chained to the White House fence after President Obama's Health Care Czar Nancy Ann DeParle stated with no reservation that long term services and supports WILL NOT be in health care reform. She told 10 ADAPT activists that they can't do it in the timeframe set and that we would have to live with the institutional bias. Arrests are occurring.

Police Arresting Angry Members of the Disabled Community Who Are Picketing White House

Source: ABC News, by Jake Tapper and Sunlen Miller

Police have started to arrest some of the disabled protestors picketing outside the White House right now. Almost all of the 400 demonstrators are in wheelchairs. "Shame on you, Obama is a liar! Shame on you, Obama is a liar!" some are chanting.

They're here from all over the country -- Texas, Montana, New York, Pennsylvania -- to protest what they see as President Obama not sufficiently supporting the Community Choice Act, a bill that would amend the Social Security Act to provide those with disabilities and older Americans the ability to use federal funding for community-based attendant services instead of just for nursing homes.

ADAPT wants the Community Choice Act to be included as part of the overall health care reform package. White House health care czar Nancy-Ann DeParle told some members of ADAPT this morning that President Obama as a candidate supported CCA, but not as a part of the overall health reform effort. Sen. Tom Harkin, D-Iowa, and Rep. Danny Davis, D-Illinois, introduced the bill last month.*

"The President supports CCA and was in fact a co-sponsor of it when he was in the Senate," says the administration's spokesperson for health reform, Linda Douglass. "He hasn't signed it into law because there is nothing to sign yet. It was introduced at the beginning of the year and has been referred to the Energy and Commerce Committee."

"Take me inside with you right now and I'll call Obama a f------ liar to his face," says Peggy Dougherty, 69, from Easton, Penn, who has handcuffed herself to the White House gate. Dougherty, who suffers from multiple sclerosis, has an Obama/Biden pin on her purse. She voted for the Democratic ticket, she says. "He made a promise and he broke it," she says.

Many of the protestors here today are members of the disability rights group ADAPT. According to an "action alert" sent by the Center for Disability Rights, ADAPT members were told by that "(d)espite featuring the Community Choice Act (CCA) prominently in the presidential campaign, President Obama's administration, including Ms. DeParle, has again demonstrated that they are unwilling to take leadership and capitalize on the promise of healthcare reform to pass CCA. ADAPT has been part of prior meetings with the Obama administration which also failed to yield any commitment to call for CCA to be part of healthcare reform."

Continues the action alert: "In response to the Obama administration's refusal to demonstrate leadership, ADAPT activists have chained and handcuffed themselves to the Whitehouse fence. They are refusing to leave until President Obama fulfils his campaign commitment to support passage of the CCA. ADAPT is demanding that President Obama create the change that Americans with Disabilities need: the Community Choice Act!"

"This is about choosing to live in our homes in our communities instead of nursing homes," says Milagros Franco, from the Brooklyn Center for Independence of the Disabled.
"I'm a survivor of a nursing home," says Eileen "Spitfire" Sabel. "I could tell you stories that would curl your hair."

As senators, both President Obama and Vice President Biden co-sponsored the Community Choice Act. During the campaign, then-Sen. Obama said the "legislation is vitally important to the independence, community integration, and equality of hundreds of thousands of Americans with disabilities," that it will help to empower them "to take full advantage of their talents" and "ensure that everyone can live independently as full citizens in their communities."

A man in a wheelchair handed me two ADAPT fliers. "The squeaky wheel gets the grease," says one. Reads another: "You think prison is bad, trying living in a nursing home."

UPDATE: Harkin communications director Kate Cyrul emailed ADAPT to say: "Discussions about what will and will not be in the health reform package are currently underway, and no final decisions have been made. Senator Harkin has made clear that any health care reform package is incomplete if it does not address the right of individuals with disabilities to choose to live in the community and receive supportive care, services they are currently entitled to only in an institutional setting. Senator Obama was a cosponsor of the Community Choice Act in the 110th Congress, and made support for the legislation a key part of his disabilities platform during the campaign."

NCIL Opposes Obama Nominee to the Maryland Seat of the Fourth Circuit Court of Appeals

Judge Andre Davis has a poor record in the area of Employment Discrimination

On Thursday, April 23, NCIL's Executive Director, John Lancaster, along with other national disability organizations, met with officials from the White House to discuss opposition to Judge Davis' nomination to the Fourth Circuit Court of Appeals. The meeting was a chance for disability rights advocates to explain the opposition to the nomination, despite the Obama Administration's assertion that Judge Davis has a good track record on civil rights. While Judge Davis has decided favorably for people with disabilities in cases regarding physical accessibility, his record on employment discrimination does not respect the ADA and Congress' intent. Judge Davis' inability to correctly interpret the meaning of disability and the ADA leaves NCIL and other advocates concerned about future misunderstanding about the ADA Amendments Act, signed into law last year.

The White House will continue to support Judge Davis' nomination, despite the concerns addressed at Thursday's meeting. While NCIL is not satisfied with that decision, and will oppose the nomination, the White House did offer to spend more time vetting future nominees, specifically about their track record on disability issues. The White House will work with NCIL and other organizations to make sure that the voice of people with disabilities is heard when making judicial nominations.

NCIL will provide additional information about our opposition to Judge Davis in the near future. We will seek the support of our membership in advocating with the Senate to derail his confirmation.

2) National News

The Budget is Coming! The Budget is Coming!

Committees in the U.S. House and Senate have been burning the midnight oil by putting together their respective versions of a federal budget for Fiscal Year 2010. The Federal Budget process is a complicated one, but the most important process for funding the programs and services we all rely on for employment, health, safety, and our way of life. To make things a little easier to understand, here is a simplified estimate of the timeline for achieving a federal budget this year. Please note that these timeframes are only estimates and typically change.

2009 Timetable for FY 2010 Federal Budget

January

• Congressional Budget Office (CBO) releases projected deficits

February

• 2-26: President Obama released his preliminary budget plan with rough estimates and few details. Detailed plan coming in Spring.

March

• 3-11: 2009 Omnibus Bill Signed into law
• 3-20: CBO releases new budget deficit projections
• Week of 3-23: House and Senate Budget Committees mark up FY2010 Budget Resolutions (their general versions of the budget)
• Week of 3-30: Resolutions passed by House/Senate

April

• 4-20 to 5-1: Congress finalizes FY 2010 Budget Resolution

May

• First week of May: President Obama is expected to submit a detailed budget plan
• Mid-May: Appropriations Subcommittees (there are 12 of them and they include HUD, Agriculture, etc…) receive their allocations for FY 2010. Once these Allocations are determined and sent to the Subcommittees, the total amount appropriated cannot be increased. That means if a particular housing program in HUD is proposed to be underfunded, the only way increase the amount is to take money from somewhere else in HUD.

June and July

• House/Senate Committees mark up FY 2010 Appropriations bills, sometimes in late May, but most likely in June/July. There could possibly be a vote in each full chamber of Congress before Congress has its recess in August - not common.

August

• Congressional Recess

September

• Federal Agency Fiscal Year 2011 requests due to the White House Office of Management and Budget (OMB). This is for the President to begin working on the next budget, even if before the 2010 budget is done.

October, November, and December

• FY 2010 Budget Process should be done or near done at this time
• FY 2011 budget requests finalized

For a more detailed explanation of the budget process, the Center on Budget and Policy Priorities has terrific information on the subject (http://www.cbpp.org/files/3-7-03bud.pdf).

Governor Kathleen Sebelius Recommended for HHS Secretary by Senate Finance Committee

On Tuesday, April 21st, by a vote of 15-8, the Senate Finance Committee voted mostly along party lines to recommend Gov. Kathleen Sebelius (D-KS) for confirmation in the full Senate. Some of the no votes were due to Republican Senators' concerns over her support of abortion rights, while others expressed dissatisfaction with her answers to questions raised during confirmation hearings. Senate Minority Whip Kyl criticized the nominee's position on healthcare policy, arguing that she would eliminate choice, particularly in treatment options. Kyl said she failed to promise the government would "not use comparative effectiveness research as a tool to deny care." The latest stimulus package included $1.1 billion for research that compares the effectiveness of medical treatments. Some Republicans argue such research could be used to block access to the best care.

Due to these concerns, some Republican members of the Senate were threatening to hold up the nomination through the filibuster process until Senate Majority Leader Harry Reid reached a deal with Republicans. The vote might come as early as tomorrow, April 28th. The deal will allow debate on the nomination for up to eight hours in return for enough republican votes to reach the 60-vote threshold to end a filibuster and hold vote on her confirmation. The Health and Human Services Secretary is the final cabinet position to be approved for the President.

Petition to Help End Discrimination Against People with Autism

Source: Autistic Self Advocacy Netowrk (ASAN)

I'm writing to ask you to sign our petition, calling on Dr. Tony Attwood and Dr. Isabelle Hénault, two respected experts in the world of Autism, to disassociate themselves from hate groups promoting stereotypes and libels that seek to encourage discrimination against Autistic people in family law and relationships. We in the disability community have long suffered from many forms of discrimination, stereotyping and discrimination. Historically, one of the most pervasive forms of this type of discrimination has come from those who use stereotypes and psuedo-science to try and deprive us of one of the most common ways of expressing membership in the human community - the right to have a family, to marry and to raise children on an equal basis with any other citizen. The eugenics movement is one of the most well known examples of this dangerous and unethical means of discriminating against people with disabilities, as is the related idea that disabled people are inherently unfit as spouses or parents. In the name of these kinds of stereotypes, people with disabilities have been deprived of parental rights and discriminated against in divorce and child custody cases for generations. In the Autistic community, we face opponents who seek to propagate these same forms of hatred, often claiming to do so either for our own good or wrapped in the guise of the same types of false science that justified the involuntary sterilization of hundreds of thousands of individuals worldwide who were deemed unfit to raise children.

For the last decade, groups like Families of Adults Afflicted with Asperger's Syndrome (FAAAS) have been promoting the idea that prolonged family contact with Autistic adults in romantic or family relationships is harmful to "normal" people. Amongst other methods, they have done this by promoting "Cassandra Affective Deprivation Disorder," a term invented by British psychologist Maxine Aston. Cassandra Affective Deprivation Disorder, a condition developed by Aston and which serves as the basis for much of her marketing and income, is claimed by Aston to be a depressive disorder caused by romantic involvement with an Autistic person. CADD is based entirely upon pseudoscience, personal grudges, and stereotypes rather than any form of accurate research or evidence. CADD has never been recognised by any psychological association and is not supported by any peer-reviewed scientific research. Aston and others involved with such groups have purported to diagnose clients with CADD, despite having no legitimate authority for doing so. In CADD support groups, clients are encouraged to "vent" about the failures of their partners and to characterise Autistics in general as unsuitable for family life.

We're asking you, regardless of your background or interest in Autism or cross-disability issues, to join us in signing this petition to help secure the rights of all people to be treated equally under the law. Our petition can be found at: http://www.ipetitions.com/petition/AttwoodHenault/ and if you are interested in e-mailing directly tony@tonyattwood. com.au is the e-mail address for Dr. Attwood and ihenault@internet. uqam.ca is the e-mail address for Dr. Hénault. Thank you for your support. Together, we can mobilize our community and stop discrimination wherever it rears its ugly head.

As always, Nothing About Us, Without Us!
Ari Ne'eman, President, The Autistic Self Advocacy Network

3) State News

Another Child with a Disability Murdered by Neglect; Motive: Welfare Fraud

Source: The Associated Press, MSNBC

Flint, Michigan - A 9-year-old quadriplegic girl whose body was found in a storage unit suffered from "severe, ongoing malnutrition and neglect," a prosecutor said Friday after charging her adoptive mother with murder. Genesee County Prosecutor David Leyton charged 39-year-old Lorrie Thomas of Flint with six crimes, including second-degree murder, child abuse, tampering with evidence, removing a dead body and welfare fraud over $500.

Shylea Myza Thomas weighed 33 pounds at her death - about half her weight of 61 pounds in August 2007, Leyton said at a news conference. The girl had untreated bed sores and bones sticking through skin, he said. "Nobody should die like this. ... The child suffered - there's no question about it. It's heart-wrenching to every one of us," he said.

Investigators believe Shylea died about six weeks ago, around the time the storage unit was rented, Leyton said. He said she was supposed to be fed special, prescription food through a tube attached to her stomach. Thomas is accused of cashing a check April 13 that included a monthly stipend for the girl of $2,884.

Thomas has been in custody since Wednesday, when investigators found the girl's body in the storage unit near Flint, 65 miles northwest of Detroit. The body was in a black trash bag and stuffed into a plastic bin with mothballs to cover up the smell.

Thomas, dressed in orange jail clothes, cried Friday at her arraignment in District Court in Flint. Judge Tracy Collier-Nix ordered her held without bond and set her next court appearance for Tuesday. She was to get a court-appointed lawyer. If convicted of the murder charge, Thomas could face life in prison. Read More.

4) Announcements and Additional Resources

Google Lime Scholarship for Students with Disabilities

Access to knowledge is our thing. When it comes to higher education for promising scholars, we don't want anything to stand in the way. That's why we're proud to partner with Lime. Google is committed to helping the innovators of the future make the most of their talents by providing scholarships and networking retreats for computer science students with disabilities. Recipients of the Google Lime Scholarship will receive a scholarship for the 2009-2010 academic year.

Selected students will also be invited to attend the all-expenses-paid retreat at the Googleplex in Mountain View, CA, in 2010. Scholarships will be awarded based on the strength of candidates' academic background and demonstrated passion - $10,000USD for those studying in the US and $5,000CAD for those studying in Canada (based on average tuition costs).

Eligibility Requirements - Candidates must be:

• A student entering their junior or senior year of undergraduate study or be enrolled in a graduate program in the 2009-2010 academic year at a university in the United States or Canada (in addition to US and Canada citizens, international students with disabilities studying at universities in the US or Canada are also encouraged to apply)
• Enrolled in a Computer Science or Computer Engineering program, or a closely related technical field as a full-time student for the 2009-2010 academic year
• A person with a disability (defined as someone who has, or considers themselves to have, a long-term, or recurring, issue that impacts one or more activities that others may consider a daily function); this definition also includes the perception among others that a disability exists

How To Apply - Candidates will apply online via the Lime online application process, and provide the following:

• Contact and education information
• Current resume
• Academic transcripts
• Answers to essay questions
• Two recommendation letters from a professor, adviser or supervisor

For application materials see: http://www.limeconnect.com/google.html.

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

Message from Jeff Crowley and Kareem Dale responding to questions about the Administration's Position on Community Choice Act, and Olmstead

Call for Volunteers: NCIL Annual Conference 2009

2) National News

U.S. House Passes Hate Crime Bill

O'Reilly Smears Hate Crimes Bill with False Claims About Disability Protections

National Call-In Day May 13: Ensure Long-Term Services and Supports are Included in Healthcare Reform

3) State News

Obama Vs. Schwarzenegger: White House Threatens To Rescind Stimulus Funds

4) Announcements and Additional Resources

Home-Based Jobs through Ticket to Work for People with Disabilities

FCC Releases ASL Video Explaining New Ten-Digit Numbering and Emergency Call Handling Procedures for Internet-Based TRS

You're Invited to a Special Online Event to Introduce the "Declaration for Independence" and Call-to-Action for Health Care Reform

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

Message from Jeff Crowley and Kareem Dale responding to questions about the Administration's Position on Community Choice Act, and Olmstead

We apologize that it has taken us this long to respond. This is a very important issue and we would like to clarify our position.

The Administration looks forward to continuing to engage with the disability community about a wide range of important issues, including the steps the Administration has taken to improve the well-being of those who live with disabilities.

Among the issues we look forward to working with you on is the Community Choice Act. The President supports enactment of this important bill. He remains committed to working with you to expand access to community services and independent living and to enforcing existing civil rights laws, including the ADA, in order to ensure access to necessary services in the most integrated setting.

We know many are interested in the relationship between the Community Choice Act and health care reform. The President is working closely with Congress to pass a good health reform bill this year and remains open to working with the Hill on these issues. We believe that our efforts will improve the lives of many uninsured people with disabilities, and make it easier to take the next step of expanding access to critical community services.

Beyond the Congressional session this year, the Administration looks forward to working with the disability and aging communities to address access to Medicaid home- and community-based services and continue to address civil rights concerns of Americans with disabilities to have the right to live in the most integrated setting appropriate to their needs as enshrined by the Supreme Court in the Olmstead decision.

Jeff and Kareem

Call for Volunteers: NCIL Annual Conference 2009

We are looking for volunteers to provide invaluable support at the upcoming NCIL Annual Conference 2009 at Grand Hyatt Washington on June 5-8, 2009. NCIL plans the conference with a very energetic small team and a limited budget. We're committed to keeping costs low to make the conference affordable as possible for conference attendees and organizations. Volunteers are essential to the conference success and are valued by NCIL.

We know some of your staff must attend all conference activities but if there are others that may not normally get to come to the conference. These individuals could sign up to volunteer and have their registration fees waived. We have many areas for volunteers to help out. If you are interested in signing up to volunteer, please contact Angela Rasmussen, NCIL Logistics Coordinator at angela@ncil.org by May 22, 2009.

A Few Examples of Volunteer Positions:

• Registration Volunteers: greet attendees and provide registration support. Works directly with attendees, create nametags, process registration forms and replenish bags/materials.
• Rally Lunch & Clean-Up Volunteer: Distributes lunches, water bottles, and collect trash before, during and after Rally. Also distributes water to March participants before March begins.
• Note-Taker/Minutes: Responsible for taking minutes at the Annual Council Meeting. *Prior experience with note-taking and bring laptop computer.
• Ballot Runner: Responsible for distributing and collecting ballots at the Annual council Meeting.
• Door Keeper: Responsible for collecting Banquet meal tickets and guarding the doors.
• Stage Manager: Serves as the contact person for all large plenary speakers and serves as a liaison between logistics staff and speakers.
• Mic-Runners: The microhone-runners will facilitate large plenary Q&A sessions by bringing the microphone to participants.

Anybody is welcome to volunteer so please pass on the word that we'd love volunteers to help out at the NCIL Annual Conference 2009. Please submit your volunteer request to Angela Rasmussen, NCIL Logistics Coordinator at angela@ncil.org by May 22, 2009.

Thank You for Your Support,
NCIL Annual Conference Subcommittee

2) National News

U.S. House Passes Hate Crime Bill

Source: Reuters, by Thomas Ferraro

The U.S. House of Representatives Wednesday approved an expansion of federal "hate crime" laws -- an effort that former Republican President George W. Bush had opposed. On a vote of 249-175, the House passed and sent to the Senate a bill backed by the new Democratic White House to broaden such laws by classifying as "hate crimes" those attacks based on a victim's sexual orientation, gender identity or mental or physical disability. The current law, enacted four decades ago, limits federal jurisdiction over hate crimes to assaults based on race, color, religion or national origin.

The bill would lift a requirement that a victim had to be attacked while engaged in a federally protected activity, like attending school, for it to be a federal hate crime.

House Democratic Leader Steny Hoyer urged passage of the Federal Local Law Enforcement Hate Crimes Prevention Act of 2009. "Hate crimes motivated by race, religion, national origin, gender, sexual orientation, and identity or disability not only injure individual victims, but also terrorize entire segments of our population and tear at our nation's social fabric," Hoyer said.

Bush had helped stop such a bill in the last Congress, arguing existing state and federal laws were adequate. But President Barack Obama asked Congress to send it to him to sign into law. "I urge members on both sides of the aisle to act on this important civil rights issue by passing this legislation to protect all of our citizens from violent acts of intolerance," Obama said in a statement before the vote.

Conviction of a hate crime carries stepped up punishment, above and beyond that meted out for the attack. The bill would allow the federal government to help state and local authorities investigate hate crimes.

Representative Lamar Smith, ranking Republican on the House Judiciary Committee, helped lead the charge against the bill, arguing it was misdirected and discriminatory.
"All violent crimes must be vigorously prosecuted," Smith said. "Unfortunately, this bill undermines one of the most basic principles of our criminal justice system -- 'equal justice for all.'"

"Justice will now depend on the race, gender, sexual orientation, disability or other protected status of the victim," Smith said. "It will allow different penalties to be imposed for the same crime."

Earlier this year, Congress passed two other major bills derailed during the Bush administration. One, vetoed by Bush, would have expanded a federal health insurance program for children. The other, blocked by Bush's fellow Republicans in the Senate, would have reversed a U.S. Supreme Court ruling to make it easier to sue for discrimination in the workplace. With Democrats having won the White House and expanded their control of Congress in the 2008 election, both measures were among the party's top 2009 legislative priorities. And they became among the first bills Obama signed into law.

O'Reilly Smears Hate Crimes Bill with False Claims About Disability Protections

Source: Media Matters for America

Bill O'Reilly claimed that pedophiles could be protected under the Local Law Enforcement Hate Crimes Prevention Act, which defines as a federal crime acts of violence motivated by prejudice against people with disabilities, among others. But pedophilia is not considered a "disability" under current federal law.

On the May 5 edition of Fox News' The O'Reilly Factor, host Bill O'Reilly falsely claimed that pedophiles could be protected under the Local Law Enforcement Hate Crimes Prevention Act -- which defines as a crime acts of attempted violence "motivated by prejudice based on the actual or perceived race, color, religion, national origin, gender, sexual orientation, gender identity, or disability of the victim." Specifically, O'Reilly said:

"[Y]ou could make an argument that a pedophile has a disease, and because the disease is there, he's a target or she's a target." O'Reilly later added that pedophiles could be protected by the bill because "[d]isability is included. They have a mental disability." However, pedophilia is not considered a "disability" under current federal law.

Indeed, the Americans with Disabilities Act of 1990 (ADA), specifically excludes pedophilia, thereby precluding protection for pedophiles from the hate crimes bill. Additionally, on May 6, America's Newsroom co-host Megyn Kelly joined other Fox hosts in advancing the false claim that Democrats "vote[d] to protect" pedophiles by voting against an amendment to the hate crimes bill by Rep. Steve King (R-IA) stating that "the term 'sexual orientation' shall not include pedophilia."

While discussing the Democrats' opposition to King's amendment, O'Reilly suggested that by defining as crimes acts of attempted violence "motivated by prejudice based on the actual or perceived ... disability of the victim," the underlying bill could protect pedophiles because "a psychiatrist would make an argument ... they have a disease. They can't control themselves." O'Reilly also stated that "you could make an argument that a pedophile has a disease, and because the disease is there, he's a target or she's a target." After Fox News contributor Marc Lamont Hill later stated, "when we talk about sexual orientation, you're not talking about ... pedophilia," O'Reilly replied, "Disability is included. They have a mental disability." Read More.

National Call-In Day May 13: Ensure Long-Term Services and Supports are Included in Healthcare Reform

NCIL has joined with CCD in a National Call in Day to push for long term care services in health care reform. Please join the movement and let your voice be heard May 13th. Last March, over 5000 calls were received in the Senate and were hoping to triple that number so Congress cannot ignore the grassroots movement and the demand to include long term care in healthcare reform.

Background: In coming weeks, the Senate will finalize legislation to reform America's health care system. Long-term services and supports are essential to individuals with disabilities and seniors and must be included.

While over 48 million Americans do not have medical insurance, over 250 million Americans lack any insurance protection for the costs of long-term services. Nearly half of all funding for long-term services is provided through Medicaid that requires individuals to impoverish themselves to receive supports.

There is an institutional bias within Medicaid that denies Americans with disabilities an equal choice for home and community services. Hundreds of thousands of individuals with disabilities and their families are on waiting lists for Medicaid home and community-based services.

Proposals exist to help address these issues. However, they will only be included within healthcare reform legislation if Congress hears from you. Aging and disability organizations have joined together to host a national call-in day on Wednesday, May 13. Please join thousands of others across the country in calling your Senators to tell them how important it is to include long-term services and supports. Your calls can make a difference!

Call-In Information
When: Wednesday, May 13 (Between 8AM and 6PM EDT)
Call-In Number: 1-866-459-9232 (Toll Free)

You will be asked which state you are calling from and will be connected to your Senators' offices. Below is a sample script to leave a message.

"Hello [state your name and where you are calling from]. I'm calling to ask the Senator to help make sure long-term services and supports are part of health care reform. Long-term services and supports are essential to the health, well-being, and community participation of individuals with disabilities and seniors. Please ensure long-term services and supports are included in legislation to reform health care. Thank you."

3) State News

Obama Vs. Schwarzenegger: White House Threatens To Rescind Stimulus Funds

Source: The Huffington Post, by Rachel Weiner

Arnold Schwarzenegger has been one of the prominent Republican defenders of President Obama's stimulus plan. He's called the California governor "one of the great innovators of state government" and "an outstanding partner with our administration." But their relationship has hit a rough patch.

The L.A. Times reports that the Obama administration is threatening to rescind stimulus billions of dollars in federal stimulus funds if wage cuts to unionized home healthcare workers are not restored.

Schwarzenegger's office was advised this week by federal health officials that the wage reduction, which will save California $74 million, violates provisions of the American Recovery and Reinvestment Act. Failure to revoke the scheduled wage cut before it takes effect July 1 could cost California $6.8 billion in stimulus money, according to state officials.

The Service Employees International Union, which represents the workers, requested the opinion from Obama's Department of Health and Human Services. "The Obama Administration has made it clear that the State cannot cut the homecare workers' wages. Now we need our counties to follow suit and take all the cuts off the table," said SEIU Executive Vice President and SEIU UHW Trustee, Eliseo Medina.

"I am glad that President Obama stood up for us," said Greg Price, a homecare worker and SEIU UHW member in Fresno County. "Now it is up to the County to stand up for workers like me."

Schwarzenegger, however, has said the state doesn't have the money. "Neither the Legislature nor I make decisions to reduce wages or benefits lightly, but only as a last resort in response to an unprecedented fiscal crisis," Schwarzenegger wrote in a letter to Health and Human Services Secretary Kathleen Sebelius. He urged the administration to reconsider.

4) Announcements and Additional Resources

Home-Based Jobs through Ticket to Work for People with Disabilities

NTI, the National Telecommuting Institute, has a non-profit program to assist people with disabilities in home employment called the Ticket To Work Home-Based Jobs. Most positions are telecommunication, home-computer jobs. Wages are from $9 - $15/hour. Contact the organization at www.mytickettoworkathome.org or 1-866-501-8387.

FCC Releases ASL Video Explaining New Ten-Digit Numbering and Emergency Call Handling Procedures for Internet-Based TRS

Source: News release from the FCC Consumer and Governmental Affairs Bureau

The Federal Communications Commission has produced a video in American Sign Language to explain the new ten-digit numbering requirements and emergency call handling procedures for Internet-based telecommunications relay services. You can view the video at: http://www.fcc.gov/cgb/dro/numbering_and_e911_for_vrs_ip.html.

Since December 31, 2008, persons with hearing and speech disabilities using Video Relay Service (VRS) or Internet Protocol Relay (IP Relay) - two forms of Internet-based Telecommunications Relay Service (TRS) - have been able to obtain ten-digit geographic telephone numbers that permit access to enhanced 911 (E911) service, as well as facilitate the placing and receiving of IP-based TRS calls.

VRS and IP Relay users obtaining ten-digit telephone numbers can make emergency calls through their primary ("default") provider and have the call, along with their ten-digit number and Registered Location information, automatically routed to the appropriate public safety answering point, the same E911 call center used by voice telephone users. In addition, all 911 emergency calls made through VRS or IP Relay must receive priority attention so that they will be answered by the first available Communications Assistant ahead of all other non-emergency calls.

Further, with a ten-digit number, voice telephone users calling someone using VRS or IP Relay will simply dial the user's assigned ten-digit telephone number, rather than the VRS or IP Relay provider's access number and the user's IP address or proxy telephone number.

After June 30, 2009, all VRS and IP Relay users must have registered with a default provider - i.e., obtained an ten-digit geographic telephone number and provided location information - in order to place a VRS or IP Relay call (unless it is an emergency call).

[NVRC Note: This 14-segment video is in RealPlayer format. If you do not have Real Player software, when you click on the first link, "Introduction to New Numbering and E911 Requirements for VRS and IP Relay," you will be linked to a page where you can download RealPlayer free of charge.]

You're Invited to a Special Online Event to Introduce the "Declaration for Independence" and Call-to-Action for Health Care Reform

What: Health Care Reform - A Nationwide Virtual Town Hall Meeting on Independent Living and Long-Term Support and Services

When: Our National Day of Dialogue, Thursday, May 21, 2009, 2:00 p.m.

Registration: Please go to www.declarationforindependence.org

On behalf of the National Advisory Board on Improving Health Care Services for Seniors and People with Disabilities (NAB), I would like to tell you briefly about a unique but long overdue call-to-action, and how you can learn more. We invite you to join national leaders in the health care debate for a first-of-its-kind event ... a nationwide virtual town hall meeting to discuss long-term support and services for seniors and people with disabilities. This WebEx event - part of our National Day of Dialogue on Thursday, May 21, 2009 - is open to all interested parties nationwide. It's a follow-up to our new report, "Declaration for Independence: A Call to Transform Health and Long Term Services for Seniors and People with Disabilities."

Lex Frieden, Convener, National Advisory Board on Improving Health Care Services for Seniors and People with Disabilities

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

Sincerely,

Kelly Buckland, Executive Director

1) Annual Conference Summary: Activities of the Week

Annual Meeting: Elections

Annual Meeting: Resolutions

Awards

Legislative and Advocacy Update!

March and Rally at the Nation's Capitol

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

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

1)Annual Conference Summary: Activities of the Week

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

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

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

Annual Meeting: Elections

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

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

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

Annual Meeting: Resolutions

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

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

Awards

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

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

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

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

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

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

Legislative and Advocacy Update!

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

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

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

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

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

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

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

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

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

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

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

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

March and Rally at the Nation's Capitol

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

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

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

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

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

Source: CQ HealthBeat By Jane Norman

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Correction: In Issue 16 of the Weekly Advocacy Monitor, we incorrectly identified Brenda Curtiss as the new Chair of the NCIL Regional Representatives Committee. Carla Lawson of Oklahoma (Region VI) is the new Chair of that Committee.

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

2009 Supplemental Appropriations Bill: Stimulus Funds Do Not Need to be Used to Create New Centers!

NCIL Officially Supports the Confirmation of Judge Sonia Sotomayor to the Supreme Court

Five Things You Should Know About Judge Sonia Sotomayor and Disability Rights

2) National News

Congress is Home for the Week - Have They Heard from You?

CLASS Act Scored: Cost-Savings of $59 Billion Over 10 Years!

No State Meets Community Living Obligation, Bazelon Report Says

Report Supports Use of Nonpesticide Measures

Current Voting Issues, Part II

3) State News

Oregon Couple Seeks $14 Million for "Wrongful" Birth of Daughter with Down Syndrome

Mental Health Parity in Michigan Needs Your Support: Action Alert from Partners for Parity

Illinois Advocates Hold Huge Protest over Human Service and Mental Health Cuts

4) Announcements and Additional Resources

Kathy Martinez Confirmed as ODEP Assistant Secretary

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

2009 Supplemental Appropriations Bill: Stimulus Funds Do Not Need to be Used to Create New Centers!

The Rehabilitation Act sets out priorities for Title VII, Part C funding as follows:

1. Fund current Centers at the current level
2. Provide a Cost of Living Increase to current CILs
3. Start New CILs

Section 803 (See language below) of the Fiscal Year 2009 Supplemental Appropriations Bill, passed by both houses of congress and signed by the President removes the requirement for RSA or Designated State Units to start new Centers for Independent Living with American Recovery and Reinvestment Act (ARRA) funding. This would leave it to the State Plan for Independent Living (SPIL) to determine if new CIL's should be developed. NCIL discourages states from starting new CILs with ARRA funding unless they have developed a strategy to continue funding the new CILs after the ARRA funds have been expended.

SEC. 803. The Commissioner of the Rehabilitation Services Administration, or the Director of a designated State unit that has approval to make awards under section 723 of the Rehabilitation Act, may allocate funds appropriated under the American Reinvestment and Recovery Act of 2009 (Public Law 111-5) ("ARRA") for the Centers for Independent Living Program among centers in a State without regard to the priority in section 722(e)(3) or section 723(e)(3) of the Rehabilitation Act of 1973 for funding new centers if the allocation is consistent with the provisions of the State plan submitted under section 704 of the Rehabilitation Act and approved by the Commissioner. Such funds and other Independent Living funds available under ARRA that are being set aside by the Department of Education for competitive grants may be used to support multi-year grants of up to 5 years and may be expended by any recipients of such multi-year grants during the project period of the grant, notwithstanding any provision in the Rehabilitation Act limiting the period of availability for obligation or expenditure by the grantee.

NCIL Officially Supports the Confirmation of Judge Sonia Sotomayor to the Supreme Court

NCIL has gone on record to support Sonia Sotomayor to be confirmed as the next Supreme Court Justice of the United States. NCIL has weighed her record as an appeals court and circuit court judge, which was an extensive record, and how we felt that record demonstrated her ability to make decisions on the Supreme Court that would respect the rights of people with disabilities. NCIL's decision was supported by the broad research efforts of the Bazelon Center for Mental Health Law, and their interpretation and review of the thousands of cases that Judge Sotomayor has made a decision on. Judge Sotomayor's decisions under the Americans with Disabilities Act (ADA), have demonstrated a good understanding of - and healthy respect for - the rights of persons with disabilities. In important ADA cases concerning the definition of "disability", Judge Sotomayor has often combed through voluminous or technical testimony to determine whether the plaintiff was protected by the law. Similarly, her understanding of the importance of accommodations to help workers with disabilities maintain employment is reflected in her thoughtful decisions in workplace accommodation cases. She has not been afraid to dissent from a decision finding that plaintiffs did not have disabilities. Nor has she been afraid to overturn a jury verdict where incorrect instructions to the jury impeded a plaintiff's ability to obtain relief under the ADA.

Additionally, NCIL feels it is important to embrace the fact that Judge Sotomayor is a person with a disability, and unlike others before her, has embraced and not hidden her disability from the public. Read a letter in support of her confirmation and sign on.

Five Things You Should Know About Judge Sonia Sotomayor and Disability Rights

Source: Bazelon Center for Mental Health Law:

Judge Sonia Sotomayor, President Obama's first nominee to the United States Supreme Court, understands that disability rights are civil rights. As a judge on both the district court and circuit court, she has demonstrated that she recognizes the importance of Congress's role in enacting major disability rights laws including the Americans with Disabilities Act (ADA), the Rehabilitation Act, and the Individuals with Disabilities Education Act (IDEA). These laws protect the civil rights of people with disabilities by requiring that they have equal opportunities in work and at school, that they have equal access to government services and public accommodations, like stores, restaurants, theaters, and sporting events. The care that Judge Sotomayor has taken in her decisions under these laws indicates a respect for Congress's intent to protect individuals with disabilities from such discrimination. And she is not afraid to take bold positions to ensure that Congress's laws protecting disability rights are upheld.

Judge Sotomayor understands that the ADA protects millions of people with disabilities: Over the years many judges have taken an extremely narrow view of whether people with disabilities like cancer, diabetes, epilepsy, and many mental illnesses were covered by the ADA. Last year, Congress had to amend the ADA to make it clear that people with disabilities like these are protected. Judge Sotomayor has a record of looking at all of the facts to ensure that she makes the right decision about whether a plaintiff is protected by the ADA.

Judge Sotomayor knows how important special education is to students with disabilities and their families: Special education consists of critical specialized instruction and services for students with disabilities who need these supports to succeed in school and life. Judge Sotomayor has acknowledged that when families and schools disagree about what services are appropriate, a student's success in school hangs in the balance and, as a result, such disagreements should be resolved as soon as possible. In one case, Judge Sotomayor held that parents can place their child in an alternative setting and get reimbursed for the cost of appropriate services if the public school fails to provide them. This year the Supreme Court agreed with Judge Sotomayor's position when it decided the Forest Grove case.

Judge Sotomayor knows that people with disabilities have a right to privacy: Under the ADA employees are protected from having personal information disclosed to people who don't need to know about it. Judge Sotomayor has affirmed this, stating that employers should not be able to "monitor … [or] control … the health of their employees [or] the most intimate aspects of their off-duty lives."

Judge Sotomayor knows that people with disabilities are entitled to lead independent lives, just like everyone else: Sometimes people make assumptions about persons with disabilities based on stereotypes of helplessness. Judge Sotomayor understands that this is wrong. Arguing that it was wrong to appoint a guardian ad litem (a person appointed by the court to protect the interests of someone who is incapacitated) for a plaintiff who had been released from a psychiatric hospital, she determined, at the least, that the plaintiff should have been given adequate notice that, "if … a guardian ad litem was appointed, she would lose all authority to make decisions concerning her own case."

Judge Sotomayor understands that court rulings have consequences: Judge Sotomayor understands that her decisions in disability rights cases have consequences for people with disabilities. In a case about whether a person with a learning disability should get accommodations to take the bar exam so she could earn her right to practice law, Judge Sotomayor wrote that the plaintiff "struggled through three laborious years of law school-at no small fiscal or psychic cost. To tell her now that she is free to go and practice another profession, or to return to her prior field … would not be consistent with the remedial goals that Congress intended in passing the ADA."

In addition to her extensive legal expertise, Judge Sotomayor's life experience makes her uniquely qualified to be a disability rights champion on the Supreme Court. Unlike any other Supreme Court justice within recent memory, Judge Sotomayor has publicly acknowledged that she has a disability--insulin-dependent diabetes. Her life experience with diabetes makes her uniquely qualified to help her colleagues on the Supreme Court understand the importance of the protections in the ADA and other disability rights laws to people with disabilities.

We need a disability rights champion on the Supreme Court. For all of these reasons, we think Judge Sotomayor can be a champion for disability rights. If you agree, contact your Senators now to ask that he or she vote to confirm Judge Sotomayor for the Supreme Court. To find contact information for your Senators, go to www.senate.gov.

2) National News

Congress is Home for the Week - Have They Heard from You?

The 4th of July Recess is a week-long period where members of Congress are back in their districts for town-hall events, parades, and a chance to hear from constituents. NCIL has repeatedly urged all members to find out if your Representative or Senators will be in your area, and if so, get out and talk to them about getting the Community Choice Act, CLASS Act, Promoting Wellness for People with Disabilities Act, and language to end the two-year wait for Medicare into the healthcare reform legislation. Many members of Congress have publically stated that what they hear from constituents during their week home is what they will take back with them when considering healthcare reform legislation. Let's not let this opportunity slip away. If there are no plans for your members of Congress to be in your area, call the nearest local office they have and share the message. The bills are being worked on right now, and we do not have any guarantees that any of the language we want in the bills will be there in the end - so ACT NOW!

CLASS Act Scored: Cost-Savings of $59 Billion Over 10 Years!

Last week, the Congressional Budget Office (CBO) finally released their score (cost estimate) of the CLASS Act. The news was very good for advocates who have been fighting the cost issue on a number of fronts. The CBO scored the bill for a cost-savings of $59 billion over the next ten years, and even more importantly, the CBO indicated the program will remain solvent over time. NCIL is pleased to hear this and feels that the CLASS Act is an important piece of the Long-Term Care puzzle, in addition to the Community Choice Act. When you talk to your members of Congress about the CLASS Act while they are in their districts this week, tell them that the CBO has scored the CLASS Act. It SAVES money and should be included in healthcare reform.

No State Meets Community Living Obligation, Bazelon Report Says

Source: Disability Scoop, by Michelle Diament

No state adequately fulfills its obligation under the Supreme Court's Olmstead decision to provide community-based living for people with disabilities, according to a report released Wednesday by the Bazelon Center for Mental Health Law.

The report, "Still Waiting… The Unfulfilled Promise of Olmstead," details the current situation ten years after the court's decision in Olmstead v. LC and EW. Under that decision, the court said that states have an obligation to provide care for people with disabilities in a community setting, where medically possible.

Currently, it's unclear how many Americans are unnecessarily living in hospitals, nursing homes and other institutional environments because each state reports information differently. And that's one of the biggest problems, the report indicates. Many, if not most, of the individuals in these situations could live in the community with supports at a lower cost.

The report recommends that states assess the number of people in their care who could be better served in community settings and shift funding from institutions to community-based supports. Further, on the federal level the report encourages an expansion of the Medicaid Home and Community Based Services Waiver, passage of the Community Choice Act and making mental health insurance coverage accessible to all Americans. To view the full report click here (PDF).

Report Supports Use of Nonpesticide Measures

Excellent news just came in about chemical-free abatement of cockroaches in 13 buildings of 5 public housing projects in East Harlem and Brooklyn. The New York City Housing Authority has trained its entire workforce of pest control professionals in integrated pest management (IPM) and suspended its use of pesticide sprays in residential units. The article below emphasizes that IPM in the units will benefit low-income children with asthma, but in fact this policy will help protect all residents with disabilities.

Nonpesticide Control Works Best on NYC Cockroaches

Source: Environmental Health News

Management measures that keep unwanted pests out of buildings and apartments can control cockroaches and their associated allergens better than traditional pesticide sprayings. This is the first study to show how a one-time, low cost visit by professionals can effectively reduce the insects' populations for up to six months. Sealing cracks and using bait traps--rather than periodic pesticide applications--to control the pests lowers people's indoor exposures to unhealthy toxic chemicals and allergens that can lead to asthma. Read More.

Current Voting Issues, Part II

This is the second of a three-part series of articles prepares by the NCIL Voting Rights Working Group. This week's article covers HAVA and the Disability Vote Alliance. The Voting Rights Taskforce is part of the ADA/Civil Rights Subcommittee here at NCIL. Both the Voting Rights Taskforce and the ADA/Civil Rights Subcommittee are always seeking new members to be a part of their efforts to strengthen and support the rights of people with disabilities. If you are interested in joining the Voting Rights Taskforce, please contact Kathy Hoell by e-mail at khoell@cox.net. If you would like to join the broader ADA/Civil Rights Taskforce, please contact Mark Derry at adamarkd@aol.com.

What is the Help America Vote Act?

HAVA is a continuum of Civil Rights Legislation for Americans with disabilities, designed to maximize societal access. HAVA is one - albeit the most important one - of the gains toward societal accessibility obtained by persons with disabilities. There is nothing as important in this great Republic of ours as the assurance that every citizen has access to their right to the voting process in the same manner as everyone else, and that the vote cast is the vote counted.

Despite the fact that our great nation has finally crossed a historical milestone by electing the first African American President of the United States, many Americans with disabilities are still being denied the most basic tool to fully participate within the voting process. The voting process is instrumental in the exercise of political power by any one particular group. Such is the power of the disability vote.

The disability community comprises 20 percent of our nation's population, making this the largest minority constituency in the country. However, the disability community is the least mobilized voting bloc, vote at a rate that is typically lower than the general population, and lower than the more organized minority constituencies. Because of this lack of a consistent, mobilized voting bloc, people with disabilities have limited access to the policymakers responsible for decisions that affect the lives of and services available to people with disabilities. This lack of political power is evidenced by disproportionate poverty and unemployment rates between people with disabilities and the general population; two-thirds of people with disabilities live below the federal poverty line, and 85% are unemployed or underemployed. This lack of power and involvement by citizens with disabilities within our political system must come to an end and it must begin - NOW!

If the disability community wants to be taken seriously by our elected officials, as they seriously compete for the vote of other groups, we need to show them that we are a consolidated and strong voting bloc. Every single person with a disability needs to VOTE in every single election to demonstrate our power as a group, and to ensure that the voting process will be fully accessible for as many people with disabilities as possible.

Join the Disability Vote Alliance Today! Toward maximizing and strengthening voter participation by persons with disabilities, a number of states have developed Voting Coalitions that are working on increasing voter participation and strengthening the power of the disability vote. There is the Disability Vote Alliance which is a state and national partnership for disability vote mobilization and there are organized state-wide Disability Vote Coalitions in 13 states.

3) State News

Oregon Couple Seeks $14 Million for "Wrongful" Birth of Daughter with Down Syndrome

Source: The Oregonian, by Aimee Green

In the months before their daughter was born in 2007, Deborah and Ariel Levy worried the baby might have Down syndrome. They say a doctor at the Legacy Center for Maternal-Fetal Medicine assured them that a sample of tissue taken from the placenta early in the pregnancy ruled out the developmental disability, despite the results of later testing that showed the fetus might have it.

But within days of the birth of their daughter, the Southwest Portland couple learned the baby did have Down syndrome. Had they known, they say, they would have terminated the pregnancy. Now they're suing in Multnomah County Circuit Court, seeking more than $14 million to cover the costs of raising her and providing education, medical care, and speech and physical therapy for their daughter, who turned 2 this month. The suit also seeks money to cover her life-long living expenses.

The Levys declined to be interviewed. Their attorney, David K. Miller, said the toddler is as dear to them as their two older children but they fear being perceived as "heartless."

Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, said fewer than 10 such suits -- for disabilities ranging from spina bifida to severe retardation -- are filed in the U.S. each year. "The reason they're rare is you are forced to take a position that's very awkward," Caplan said. "Parents don't like arguing it, and courts don't like hearing it." Parents must be willing to declare "we feel burdened to have this child," Caplan said. And in order for the suits to succeed, courts must be willing to rule that "it's better not to exist and give damages for having to exist," Caplan said.

Miller said his clients are "committed to the best possible life for their daughter." He said one of their role models is Karen Gaffney, a 31-year-old Portland woman with Down syndrome who earned a regular high-school diploma and an associate of science degree from Portland Community College and travels the nation as a renowned speaker. "They feel very strongly that what happened to them was wrong," Miller said. "They were given incorrect information, and their lives have changed because of it." Read More.

Mental Health Parity in Michigan Needs Your Support: Action Alert from Partners for Parity

Members of Michigan Partners for Parity were stunned yesterday when the House Health Policy Committee unanimously reported out HB 4476 and 4183, with a recommendation that they pass. These bills would require private insurers to provide coverage for the autism spectrum disorders and, for specific treatments. In other words, these bills would provide parity for individuals with autism spectrum disorders but would continue to discriminate against people with all other mental, emotional, developmental and20substance use disorders.

Michigan Partners for Parity deplores the lack of insurance coverage for autism and its related disorders. However, to support these bills without passing comprehension parity continues to discriminate against and stigmatize people with all mental and emotional disorders. Amy Zaagman, of the Michigan Association of Community Mental Health Boards summed up Partners' frustration beautifully: "And so I come to share today that the mental health and developmental disabilities community remains hurt and confused as to why this committee views moving autism-only bills that amend the exact same sections of statute as anything other than discriminatory. We have reached out to the autism advocacy community to work together on comprehensive bills and have been rebuffed. We have, at every opportunity, given language to the sponsors of these bills as to how we could cover all Michigan families struggling with brain disorders and yet, we are here today on the verge of moving autism-only bills. Comprehensive bills have been done in other states and if we work together we are convinced it could be done here."

For 16 years, MI Partners for Parity and its member organizations have fought to end discrimination against people with mental illness. Never has it been more important to have our legislators hear our voices. We need to let our elected officials know how important this issue is to so many, many people. Our lobbyists tell us we need 5,000 letters with a single message: Do not pass the autism bills without the parity bills. It is time to end discrimination against all people with brain disorders!

We need you to help get a letter tree going. The letters (snail or e-mail) should be addressed to Representative Andy Dillon, the Speaker of the House. These letters have to start pouring in before the end of this week.Just give the Speaker the message that you are shocked, dismayed, insulted, offended and hurt (use your own words) that mental health parity has been bypassed, marginalized, sidelined, and discriminated against in favor of singling out one disorder for a legislative mandate. Why is one child favored over another? We have many policy objections over the details of the autism mandate bills, but your message just needs to be simple, direct, and swiftly delivered: Do not vote on the autism mandate unless you also take a vote for mental health parity. We can and must snatch victory from the jaws of defeat. There are a number of members in the House who support us and do not want to see parity left behind. This apparent setback may be a blessing in disguise if each of us does the right thing and speaks up for parity.

Write to: The Honorable Andy Dillon, Speaker of the House / Michigan House of Representatives / PO Box 30014 / Lansing MI / 48909. Or send an e-mail to: andydillon@house.mi.gov

Illinois Advocates Hold Huge Protest over Human Service and Mental Health Cuts

Source: NBC

They came in wheelchairs and brandishing signs -- people with disabilities asking that they not be forced to suffer when the state budget axe swings. Hundreds descended on the Thompson Center on Monday to rally against cuts they say would affect the quality of their lives. Protesters held signs that read, "Illinois is wasting money," "Save our services," and "Institutions never work."

"People want to live in the community. People who are in the community are successful. Those placements are going to be cut, and people are going to have to go back into institutions," said Barry Taylor, with Equip for Equality.

The goal of the protest was to catch the attention of legislators who return to Springfield tomorrow in an attempt to patch a $9.2 billion budget shortfall. But the question remains: who will have to pay?

Sharon Cosgrove was once institutionalized with an eating disorder. "They put me in restraints because I would bang my head. I'd say, 'No, I'll stop. I'll stop. They dehumanized me," she said.

Cosgrove is one of 5,000 people helped each year by the Anixter Center. But the $22 million it gets from the state has already been cut by $6 million, and stands to lose $6 million more. "It's a disaster -- 1,700 people will lose services if we have to implement it. We will lay off close to 100 staff," the Anixter Center's Allan Bergman said.

Sharon, who was planning to go to college in the fall, wonders what will happen to her. "We can't have these cuts. I am so scared we're going to lose our home," she said. Watch a video of the march!

4) Announcements and Additional Resources

Kathy Martinez Confirmed as ODEP Assistant Secretary

From the Senate Daily Digest: Kathy Martinez was confirmed by the Senate Thursday, June 25 as ODEP Assistant Secretary. Blind since birth, Martinez, who has worked as executive director of the World Institute on Disability (WID) since 2005, has worked in employment, asset building, independent living, international development, and diversity and gender issues in her work at WID. For more information on Martinez see her profile from National Journal: http://www.nationaljournal.com/decisionmakers/dm/349/.

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

Healthcare Reform Update

CLASS Act Survives Mark-Up; Still Part of Healthcare Reform

2) National News

OUTRAGEOUS! Peter Singer Enters Healthcare Debate: Our Lives are Half as Valuable, Cure or Kill Mentality is Philosophically Sound by Our Own Standards

HELP Subcommittee Holds WIA Hearing

Sotomayor Confirmation Hearing Began Last Week; Full Senate Vote as Early as This Week

Hate Crimes Bill Nears Passage

3) State News

NCIL Members' Contributions Help Save Iowa Center

4) Announcements and Additional Resources

Stories Needed from Members About ARRA Experience with RSA

Share Your Voting Stories: What Is Going On Where You Live?

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

Healthcare Reform Update

The healthcare reform process is being described as a soap opera, with its wild ups and downs. One minute it looks like the effort may fail, and the next it's moving rapidly through committees. A lot has been accomplished, but a lot of questions need answers. The hard part has yet to come: how to pay for reform without adding new taxes to low- and middle-income Americans while creating an adequate benefits package.

The House Ways and Means Committee and Education and Labor Committee have both finished their mark-ups of the Tri-Committee Healthcare reform bill, and passed their bills out of Committee. Education and Labor will finish next week. There are now three versions of the 1,000+ page bill, and once all three have passed out of their Committees, the differences will have to be worked out.

Some of the positives that we have seen so far in the HELP and House versions of healthcare reform include:

• expanded Medical Assistance eligibility to individual adults without children,
• subsidies to individuals and families to assist them to purchase health insurance in the proposed "healthcare exchange",
• newly added language in one of the House bills that likely mandates Durable Medical Equipment as a basic benefit of private plans in the health insurance exchange,
• a public insurance program that will be a new choice of coverage for people in areas with limited options,
• the language from the promoting wellness legislation that requires the Access Board to develop accessibility standards for medical and examination equipment, and the removal of the discrimination of people with pre-existing conditions in health insurance.

NCIL is still waiting to see language that ends the institutional bias in Medicaid (the language in the CCA) and language to end the two year wait for Medicare. We are also working to include the CLASS Act in the House bill (although it was an introduced amendment in one of the committees). NCIL is impressed of the scope of the changes being introduced, but still pushes on to make sure some key reforms just mentioned are not left out.
In Senate Finance, they are working away at cutting provisions to bring the cost down under 1 trillion dollars over the next ten years. This is never a good thing when what you wanted wasn't in the original draft of proposals to begin with. This is due in large part to the rejection of the idea to tax healthcare benefits. Organized labor was influential in this, and the President has consistently opposed it. This left a 300 billion dollar gap that had to be filled by cuts, instead of "revenue raiser" or what we know more commonly as taxes. Just as a reminder, the Senate Finance Committee is the committee with the ability to draft language that would finally end the institutional bias in Medical Assistance through the language of the Community Choice Act.

In the Senate Health, Education, Labor and Pensions Committee, they finished the mark-up and passed their bill out the Committee. See the update about the CLASS Act below.

One final point about the reform process is that regardless of what committee adds provisions we like or do not like, the conferencing of committees in each chamber is a chance to create a complete bill for that respective chamber. It could have a good result where good things are added from each Committee's "marked-up" bill, or it could be the opposite, and good things from one version are removed for the final version. This happens again later after each bill passes its respective chamber and the two bills have to be the same to reach the President's desk. The House and the Senate versions have to be one bill for the President to sign.

A lot is happening. A lot can and will change. We still have a lot of work to do here in DC and throughout the country.

CLASS Act Survives Mark-Up; Still Part of Healthcare Reform

On July 7th, the Senate Health, Education, Labor and Pensions (HELP) Committee tackled long-term care reform as they marked-up the CLASS Act section of their healthcare reform legislation. NCIL Executive Director Kelly Buckland, and Policy Analyst Jason Beloungy, attended the hearing, as did many other advocates and lobbyists. The hearing room in the Russell Senate Building was full as the Committee talked about the bill and tackled how this new long-term care insurance option can be solvent yet affordable, while offering a cash benefit that can make a difference. This fundamental issue came to the front of the debate when Republican Senator Judd Gregg expressed his dissatisfaction with the CLASS Act because it was, as he felt, not designed for solvency after the first ten years. Senator Gregg cited the Congressional Budget Office (CBO) report that showed the program with a cost savings of 58 BILLION dollars in the first ten years of the program, but if actions by the Secretary of Health and Human Services were not taken to adjust benefits and premiums, the program would begin to go in the red. Senator Gregg also cited a study done by another organization where the deficit from the CLASS Act could reach $2 Trillion dollars in 75 years. While the legislation clearly gives the Secretary the authority to make premium and benefit adjustments to keep the program in the black after the first ten years, Senator Gregg wanted the premiums and benefits set from the beginning to ensure solvency for 75 years. Senator Dodd (D-CT), who is acting as Chair of the Committee in lieu of Senator Kennedy, felt that the legislation as it was written made the program solvent for the next 75 years.

While there was disagreement amongst the Committee members about whether or not the CLASS Act would remain solvent as it was written, there was an agreement that members would accept the CLASS Act and offer no other amendments if the amendment by Senator Gregg was accepted. The amendment was offered and accepted and the CLASS Act was approved by the Committee. The next step is to merge the HELP Committee bill with the Finance bill. This will happen later in July or August, once Finance releases and marks up their bill. It is felt that since this bill offers saving of $58 billion dollars in ten years, and 2 billion of that in Medicaid savings, the bill will likely be a part of the version that goes to the Senate floor.

2) National News

OUTRAGEOUS! Peter Singer Enters Healthcare Debate: Our Lives are Half as Valuable, Cure or Kill Mentality is Philosophically Sound by Our Own Standards

Peter Singer, Professor of Bioethics at Princeton University and outspoken proponent of eugenics, has entered the healthcare debate with this outrageous attack on the disability community, published in this Sunday's edition of the New York Times, along with several other newspapers. He argues that healthcare rationing is the only feasible way to achieve universal healthcare and that every life has a value - in dollars - attached to it. It's no surprise that the value he places on the lives of people with disabilities turns out to be exactly half that of others'.

Singer also states, "This method of preserving our belief that everyone has an equal right to life is, however, a double-edged sword… Disability advocates, it seems, are forced to choose between insisting that extending their lives is just as important as extending the lives of people without disabilities, and seeking public support for research into a cure for their condition." These arguments are not only deeply offensive, but also philosophically unsound. Dr. Singer has become so entrenched in his bias against our community that he is no longer able to carry out his duty as a philosopher to support his arguments with reason. It is our duty as a community to correct the wrong that Singer has caused, and to vigorously debate his claims. Get instructions on how to send a letter to the editor of the Times.

Why We Must Ration Health Care, by Peter Singer (excerpted)

"Health care does more than save lives: it also reduces pain and suffering. How can we compare saving a person's life with, say, making it possible for someone who was confined to bed to return to an active life? We can elicit people's values on that too. One common method is to describe medical conditions to people - let's say being a quadriplegic - and tell them that they can choose between 10 years in that condition or some smaller number of years without it. If most would prefer, say, 10 years as a quadriplegic to 4 years of nondisabled life, but would choose 6 years of nondisabled life over 10 with quadriplegia, but have difficulty deciding between 5 years of nondisabled life or 10 years with quadriplegia, then they are, in effect, assessing life with quadriplegia as half as good as nondisabled life. (These are hypothetical figures, chosen to keep the math simple, and not based on any actual surveys.) If that judgment represents a rough average across the population, we might conclude that restoring to nondisabled life two people who would otherwise be quadriplegics is equivalent in value to saving the life of one person, provided the life expectancies of all involved are similar.

This is the basis of the quality-adjusted life-year, or QALY, a unit designed to enable us to compare the benefits achieved by different forms of health care. The QALY has been used by economists working in health care for more than 30 years to compare the cost-effectiveness of a wide variety of medical procedures and, in some countries, as part of the process of deciding which medical treatments will be paid for with public money. If a reformed U.S. health care system explicitly accepted rationing, as I have argued it should, QALYs could play a similar role in the U.S.

Some will object that this discriminates against people with disabilities. If we return to the hypothetical assumption that a year with quadriplegia is valued at only half as much as a year without it, then a treatment that extends the lives of people without disabilities will be seen as providing twice the value of one that extends, for a similar period, the lives of quadriplegics. That clashes with the idea that all human lives are of equal value. The problem, however, does not lie with the concept of the quality-adjusted life-year, but with the judgment that, if faced with 10 years as a quadriplegic, one would prefer a shorter lifespan without a disability. Disability advocates might argue that such judgments, made by people without disabilities, merely reflect the ignorance and prejudice of people without disabilities when they think about people with disabilities. We should, they will very reasonably say, ask quadriplegics themselves to evaluate life with quadriplegia. If we do that, and we find that quadriplegics would not give up even one year of life as a quadriplegic in order to have their disability cured, then the QALY method does not justify giving preference to procedures that extend the lives of people without disabilities over procedures that extend the lives of people with disabilities.

This method of preserving our belief that everyone has an equal right to life is, however, a double-edged sword. If life with quadriplegia is as good as life without it, there is no health benefit to be gained by curing it. That implication, no doubt, would have been vigorously rejected by someone like Christopher Reeve, who, after being paralyzed in an accident, campaigned for more research into ways of overcoming spinal-cord injuries. Disability advocates, it seems, are forced to choose between insisting that extending their lives is just as important as extending the lives of people without disabilities, and seeking public support for research into a cure for their condition." Read the entire article.

HELP Subcommittee Holds WIA Hearing

On July 16th, one day after the Senate Health, Education, Labor and Pensions Committee finished it's mark-up of the healthcare legislation, the Subcommittee on Employment and Workplace Safety convened a hearing to discuss the re-authorization of the Workforce Investment Act (WIA). NCIL Executive Director, Kelly Buckland, and NCIL Policy Analyst, Jason Beloungy attended the hearing. The purpose of the hearing was to talk about the education and employment aspects of WIA. There were two panels for the hearing. The first panel included the Honorable Jane Oates, Assistant Secretary of Labor, Employment and Training Administration and The Honorable Martha Kanter, Under Secretary of the U.S. Department of Education. The panelists talked about the need for improvements to job centers to better serve persons with disabilities. The ranking member of the subcommittee, Johnny Isakson of Georgia raised concerns that NCIL has advocated in the past. He asked the Assistant Secretary how physical and programmatic access to one-stops can be improved. This is exactly the kind of advocacy that is needed and NCIL thanks the Senator from Georgia.

Later in the hearing, there was a second panel of several guests. William Kiernan of the Institute for Community Inclusion of Boston talked about employment and unemployment data on people with disabilities, and was clear in pointing out that even in good economic times, the employment rates of people with disabilities is below that of persons without disabilities, and that the impact of a bad economy is felt even more. Senator Isakson again championed employment for people with disabilities when he asked Mr. Kiernan about how employment and unemployment figures affect the national averages. NCIL will continue to track the movement of the reauthorization of WIA, and keep members informed and engaged in this matter.

Sotomayor Confirmation Hearing Began Last Week; Full Senate Vote as Early as This Week

Despite all of the work happening on healthcare reform, Senators who sit on the Senate Judiciary Committee began the process of confirming President Obama's choice for the next Justice of the Supreme Court, Judge Sonia Sotomayor. NCIL has publically endorsed the confirmation of Judge Sotomayor. The confirmation hearing is expected to last much of this week. While NCIL expects Judge Sotomayor to be approved by the Committee and ultimately confirmed by the entire Senate, NCIL continues to urge its members to call both of their U.S. Senators and tell them to vote to confirm Judge Sotomayor. If you have not done so, please take some time this week to call your Senators.

Hate Crimes Bill Nears Passage

Source: Politico, by Alex Isenstadt

Hate crimes legislation that would expand protections for those attacked because of sexual orientation [and disability] is poised to become law after several years of failed efforts to push the proposal past the Senate.

Senators, in a 63-28 vote, approved attaching the Matthew Shepard Hate Crimes Act as an amendment to the must-pass defense appropriations bill over objections from Republicans, who argued that the legislation should be considered as a stand-alone bill.

The defense bill still has to come before a Senate vote and a House-Senate conference, but Republicans concede that there is little they can do to stop the legislation from moving forward. "There are more Democrats in conference than Republicans," said Don Stewart, a spokesman for Senate Minority Leader Mitch McConnell (R-KY.). "Clearly, there are a few more hurdles before the amendment reaches the president's desk, but its prospects for becoming law this year are very good," said Allison Herwitt, legislative director for the Human Rights Campaign, an organization that is backing the legislation.

3) State News

NCIL Members' Contributions Help Save Iowa Center

Dear Friends and Colleagues of Independent Living,

It has been a little over a year since the Floods of 2008 wiped out the office of the Center for Independent Living in Waterloo, Iowa. I wanted to send out a brief update to everyone on what has happened with that Center.

Thanks to the National Council on Independent Living (NCIL) who gave the Waterloo CIL $14,000 in NCIL disaster relief funds, the CIL was able to stay in operation during and after the flood hit. I want you all to know that they finally received their FEMA funds, and have returned the $14,000 back to NCIL to replenish the NCIL Disaster Relief Fund!

The Center has relocated to a new office that is much better than the old one. They have been able to use their FEMA reimbursement to replace what was lost in the flood, which was basically everything in the office. They have also changed their name from the Black Hawk Center for Independent Living to the Northeast Iowa Center for Independent Living.

A huge thank you to all those who offered in-kind and financial assistance and words of encouragement! While the CIL did not take most people up on their offer for financial assistance, they very much appreciated the outpouring of support from across the country. Thanks everyone!

Dawn E. Francis, Executive Director, Iowa Statewide Independent Living Council

4) Announcements and Additional Resources

Stories Needed from Members About ARRA Experience with RSA

Earlier this month, NCIL sent out an alert to help members prepare for their upcoming meetings with RSA about their plans to use ARRA Part C dollars. In that alert, NCIL asked members to submit their stories to NCIL to post on the website. NCIL has received several verbal accounts, and one written account. NCIL will get the link up this week, and will post that write-up, and others as they come in. Please take some time to write about your experience with this process. Talk about the following:

• A general account of what happened
• What your state did to prepare
• What you could have done differently
• Recommendations to other states as they prepare

Please send your write-up to Jason Beloungy. His e-mail is jason@ncil.org. If you have questions, you can e-mail Jason or call him at 1-202-207-0334 (Toll-Free: 1-877-525-3400), ext. 1008.

Share Your Voting Stories: What Is Going On Where You Live?

To maximize the intended purpose of the Help America Vote Act (HAVA) the National Council on Independent Living (NCIL) Voting Rights Working Group wants to know what is going on in your community or state to get people with disabilities involved in the voting process. Such examples would be registering to vote, being comfortable with voting machines, and by volunteering as poll workers. We are also looking for stories about individual voting experiences while trying to use the accessible voting system. When we get your stories, we will reprint your experiences in anticipation that it will act as a catalyst to help others to get started to maximize voting access and participation by Americans with Disabilities. We will also use these testimonials to educate our Congressional leaders of the many barriers that still thwart millions of our brothers and sisters with disabilities from fully participating within the voting process.

Please submit your stories to Jason@ncil.org. Please feel free to share this request widely.

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

Healthcare Update

Full Senate Sotomayor Confirmation to be Debated and Voted on this Week

2) National News

Update: IL Funding and the Senate Appropriations Committee

The Americans with Disabilities Act: 19 Years of Progress, by Tom Harkin

Obama Hedges on Mandatory Community Services

3) State News

Choice Put on Hold in Alaska

Support Iowa Advocate Working for National Legislation on Gas Station Access

4) Announcements and Additional Resources

NCIL Housing Position Paper Updated; Invitation to Join the Subcommittee!

Op-Ed: Singer Rebuttal; Why We Must Not Ration Health Care

NCD Seeks Input on Emerging Trends / Issues Affecting People with Disabilities

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

Healthcare Update

Healthcare reform continues to move along. Since last week's WhAM!, the following activities have taken place: The Energy and Commerce Committee was at a stand-still when the conservative Democrats on the Committee, known as the "Blue Dogs", threatened to vote against the healthcare reform legislation because they felt it did little to control the excessive cost of healthcare and not worsen the federal budget. Many of the Blue Dogs also felt that not enough was being done to address disparities in rural areas. The Energy and Commerce Committee Chair, the Speaker of the House, the House Majority Leader, and key staff from the Obama Administration met all week to work out compromises on specific issues. While there was not total agreement on these issues, there was enough to allow the Committee to get back to work on marking up the legislation. This activity was short-lived, as the House adjourned for recess at the end of the week, and will not resume until September 8th. The next five weeks will be spent by members of Congress reaching out to constituents to find out what they want in healthcare reform. NCIL has continually included talking points and letters to Congress in the WhAM! and Action Alerts, and encourages NCIL members to use these items to tell your member of Congress what you feel needs to be in the healthcare reform legislation.

In the Senate Finance Committee, the bipartisan group of Senate Finance Committee members negotiating a proposal that could be pivotal to whether Congress enacts health overhaul legislation has set a September 15th deadline to complete their work on the Committee's draft of the legislation. The six Senators involved in the negotiations "agreed by that date there would be a product ready for a mark up," a source said. The six Senators are Committee Chairman Max Baucus (D-MT), Kent Conrad (D-ND), Jeff Bingaman (D-NM), Charles E. Grassley (R-IA), Michael B. Enzi (R-WY), and Olympia J. Snowe (R-ME). Get the Senators' contact information.

If you live in one of these states, please make an effort to attend any town hall meetings or listening sessions held by your Senator. Also call their local office and tell them that healthcare reform is NOT complete unless it includes the language of the Community Choice Act, among other reforms we have discussed previously. The Senate Health, Education, Labor and Pensions Committee has already passed their version of the healthcare legislation in their Committee. Once the Senate Finance Committee completes and passes a version in their Committee, the two bills (which will look quite different) will need to be pieced together into one final bill that the Senate can vote on. Once the Senate passes a healthcare bill, it will be compared to whatever bill comes out of the House of Representatives (which has yet to pass the third and final Committee), and a final version will need to be put together and passed by both chambers before it can go to the President's desk. The original timeline for passage was October, but it is felt that an honest goal is closer to the end of the year.

If you have questions about healthcare and long-term care reform, about procedure, how to get the legislation passed, or other questions, please contact NCIL Policy Analyst, Jason Beloungy at jason@ncil.org. Jason can be reached by phone at 202-207-0334 (toll-free: 1-877525-3400), ext. 1008.

Full Senate Sotomayor Confirmation to be Debated and Voted on this Week

Last Tuesday, July 28, the Senate Judiciary Committee voted to approve Judge Sonia Sotomayor and to recommend her confirmation to the full Senate. The vote was 13-6, with all Democrats votes in favor, along with Republican Senator Lindsey Graham (SC). The full Senate will debate the nomination this week, and is expected to vote to approve Judge Sotomayor as the next Supreme Court Justice toward the end of the week. As a reminder, NCIL strongly supports the nomination of Judge Sotomayor and urges NCIL members to call both of their Senators and tell them to vote YES to confirm.

There are only a few Senators who have not said how they will vote this week. It's very important that these Senators hear from people with disabilities, to tell them to vote for Judge Sotomayor. They need to know that people with disabilities are watching! Call your Senator today and tell him or her to vote for Judge Sotomayor!

• Senator Mark Begich (Alaska): (202) 224-3004
• Senator Lisa Murkowski (Alaska): (202) 224-6665
• Senator John McCain (Arizona): (202) 224-2235
• Senator Kit Bond (Missouri): (202) 224-5721
• Senator Ben Nelson (Nebraska): (202) 224-6551
• Senator John Ensign (Nevada): (202) 224-6244
• Senator Judd Gregg (New Hampshire): (202) 224-3324
• Senator George Voinovich (Ohio): (202) 224-3353
• Senator Mike Enzi (Wyoming): (202) 224-3424

One last note about this confirmation: while it is almost assured that Judge Sotoamyor will be confirmed, it is still vital to the civil rights of people with disabilities that members of the disability community contact their Senators to tell them that you support this nominee and feel she will respect the rights of people with disabilities when making rulings as a Supreme Court Justice. If Senators don't hear from us, they don't think we care. If they don't think we care, then they are less likely to consider justices based on how they rule, think, or act on disability issues in the future. What we do today has lasting impact - so act now and help NCIL support the confirmation of Judge Sotomayor.

2) National News

Update: IL Funding and the Senate Appropriations Committee

The Senate Appropriations Subcommittee on Labor, Health and Human Services and Education met last Tuesday, July 28, 2009, to discuss Fiscal Year 2010 Appropriations. As funding for the Independent Living Program is part of the Education budget, NCIL attended this hearing with great interest. NCIL was not able to obtain what the Independent Living Program received in funds for the Fiscal Year 2010, and the bill passed out of the Subcommittee.

On Thursday, July 30th, the full Senate Appropriations Committee met and approved the bill that passed in the Subcommittee, which Senator Tom Harkin chairs. Senator Harkin, in his remarks to the Subcommittee and full Committee, noted that many programs that received funding through the American Recovery and Reinvestment Act (ARRA / the stimulus) may see little or no increase in their 2010 appropriation because they will have funds from the ARRA obligated during that same period.

At the time of publication, NCIL has yet to see what the Senate has approved. Senator Harkin did note that when the House and Senate work to come up with one budget for 2010, as there are differences between the two budgets, there will be an opportunity for some funding to be increased that was not increased in the Senate Version. NCIL has previously reported that in the House version, Part C funding was budgeted to get an increase of $3 million, to just over $80 million dollars for FY 2010 (Part B funding was projected to remain at the FY 2009 level). NCIL applauded Chairman Obey and the rest of the Appropriations Committee, and hopes that the Senate follows their lead. If not, NCIL will be working with Congress and our members to get that increase in the final version.

The Americans with Disabilities Act: 19 Years of Progress

By Senator Tom Harkin

This month, we commemorate the 19th anniversary of the Americans with Disabilities Act (ADA) - the landmark civil rights law securing the rights of people with disabilities. As chief Senate sponsor of this legislation, I remember the day it was signed into law - June 26, 1990 - as one of the proudest in my entire legislative career.

Nineteen years later, we have made amazing progress. Thanks to the ADA, streets, buildings and transportation are more accessible for people with physical impairments. Information is offered in alternative formats, so that it is useable by individuals with visual or hearing impairments.

These changes are all around us, and are so integrated into our daily lives that it is sometimes hard to remember how the world was before. Employers are required to provide reasonable accommodations so that people with disabilities can have equal opportunity in the workplace. And we have advanced the four goals of the ADA - equality of opportunity, full participation, independent living and economic self-sufficiency.

Just as important, because of ADA, we have seen an enormous change in attitudes. It used to be socially acceptable to treat people with disabilities as second-class citizens, to exclude and marginalize them. Today, by contrast, the expectation is that we will do what it takes to give people with disabilities not just physical access, but an equal opportunity in our schools, in our workplaces, in all areas of our economy and society. We recognize that people with disabilities - like all people - have unique abilities, talents and aptitudes. And that America is better, fairer, and richer when we make full use of those gifts.

We have not yet arrived at the Promised Land - certainly not with a 60 percent unemployment rate among people with disabilities. We have a long way to go. But, on this anniversary, we have much to celebrate.

On July 26, 1990, when he signed ADA into law, President George Herbert Walker Bush spoke with great eloquence. And I will never forget his final words before taking up his pen. He said, "Let the shameful wall of exclusion finally come tumbling down." Nearly two decades later, that wall is indeed falling. The ADA has opened doors, created opportunity, and transformed lives. Let us continue this progress!

To watch a video of the speech I gave on the Senate floor in honor of the 19th anniversary of the Americans with Disabilities Act, go to http://www.youtube.com/watch?v=jZAyN4FCG3I .

Obama Hedges on Mandatory Community Services

Source: ProPublica, by Jennifer LaFleur

Obama signed a measure last week recognizing the rights of people with disabilities around the world. The United Nations Convention Proclamation on the Rights of People with Disabilities calls for equality in access to public services, medical care and other services. It also called for the right for people to choose where they live: "To recognize the equal right of all persons with disabilities to live in the community, with choices equal to others." Yet in the United States, many people with disabilities do not have that choice.

We reported in June that thousands of people nationwide want to live on their own, but instead remain in nursing homes, rehabilitation centers or state hospitals, often at a higher cost to taxpayers because of a historic bias toward institutional care. In 1999, the U.S. Supreme Court ruled [3] that funding services for Medicaid recipients who live in institutions - and not those who live in the community - violated the Americans with Disabilities Act.

"Signing a U.N. Convention proclamation doesn't give anybody freedom," said Bruce Darling, a disability activist with ADAPT from Rochester. "We are still forcing people to live in nursing homes." Disability groups have pushed for legislation, such as the proposed Community Choice Act, which would allow people with disabilities to stay at home. Medicaid guarantees service in a nursing home for those who need that level of care, but similar services in the community are optional.

Measures have been introduced in Congress for several years that would allow people to choose where they want services. When President Obama was in the Senate, he co-sponsored such legislation. But since he has been in the White House, Obama has not said he will support moves to make community services mandatory.

In June, Obama called for increased spending on independent living services and directed HUD to provide vouchers to individuals trying to move out of institutions. A White House spokesman told ProPublica "the President believes that investing in health and long-term services for people with disabilities is an important national priority," but would not say whether the President will support legislation to make community services mandatory.

"Ultimately this becomes a bureaucratic conversation about spending health care dollars," activist Darling said. "And we completely lose the concept that this is a civil rights issue for Americans. No other group gets locked up like this. No one would stand for it."

3) State News

Choice Put on Hold in Alaska

On June 28, the federal Center for Medicare and Medicaid Services (CMS) forced the State of Alaska (and only the state of Alaska) to stop taking new applications for Medicaid waivers and Personal Assistant Services.

The ban applied to Alaska's four waivers and the PCA program. Because of this ban, Alaskan elders and people with disabilities who are in nursing homes or hospitals and want to live at home may not have the choice to do so. Those who already live at home and want to stay at home may not be able to get the help they need - and could be forced into a nursing home.

The moratorium came in an audit of the State of Alaska's Senior and Disability Services waiver programs. The audit is not complete but the preliminary findings concluded there was insufficient evidence that Alaska was ensuring consumer safety. Long wait lists and the lack of adequate data on consumer's deaths areas of concern. Neither quality care nor fraud was an issue, the way the state managed the program was.

For years Alaskans have joined NCIL marches working to pass the numerous versions of the Community Choice Act, believing that in our state HCBS programs could keep us out of nursing homes. Now with the stroke of an anonymous bureaucrat's pen, those programs were put on hold.

The moratorium will be in effect until the State of Alaska can show CMS that it has addressed the audited issues.

Access Alaska is urging all people concerned about this ban to write or call the Alaska Congressional Delegation - Sen. Lisa Murkowski, Sen. Mark Begich and Rep. Don Young and ask them to pressure CMS to lift the ban while the state fixes its flawed system. Senator Begich and Murkowski along with many local legislators have responded.

For continuing information see www.accessalaska.org, www.facebook.com/AccessAlaska, and twitter @Access_Alaska.

Support Iowa Advocate Working for National Legislation on Gas Station Access

Dear Iowa and National Disability Advocates,

We have two disability advocates in Iowa, Angie Plager and Mitch Swanson, who have been discussing with Senator Tom Harkin the need to get legislation introduced for better gas station access. Senator Harkin is interested, but needs to see that there is a lot of support for this. Please read the following, and if you are in support, I believe they would like for you to print out the attached letter, sign it, and send it to Senator Tom Harkin at his Des Moines office.

Even if you are not from Iowa, you can still do this so that Senator Harkin knows there is national interest in this issue. Also, here is a website with more information on gas station lack of accessibility issues: www.disabilitygas.com. Here is the sample letter:

Senator Tom Harkin / 210 Walnut Street / Room 733 Federal Building / Des Moines, IA 50309

Dear Senator Harkin,

We have a personal interest in the dangers of refueling vehicles for individuals with physical disabilities and as parents of children with physical disabilities, who do not want to leave their children unattended in the vehicle.

The ADA requirement (42 U.S.C. 12181) states that all self-service gas stations must pump gas for their customers with disabilities when there is more than one employee on duty. The predicament is getting the attention of the store personnel, knowing the availability of this service, or having the simple means of being able to communicate with them.

We are in support of pursuing federal legislation for a safer more convenient refueling experience for people with disabilities, senior citizens, and parents of children with disabilities. An accessible, communication device to gain the attention of in store personnel would be part of this safer experience. This safer experience also needs to include signage indicating the existence of a calling device and hours that refueling services are available.

Sincerely,

Your Name / Your Address / Your Phone / Your E-Mail Address

4) Announcements and Additional Resources

NCIL Housing Position Paper Updated; Invitation to Join the Subcommittee!

NCIL's Housing Subcommittee has completed an update of the NCIL Housing Position Paper, which was last revised in August 2006. You can find the new Position Paper at http://www.ncil.org/news/HousingPositionPapers.html. The paper outlines NCIL's priorities on housing issues relating to persons with disabilities, for affordable, accessible, healthy/nontoxic, decent, safe and integrated housing for persons with disabilities. The recent NCIL survey of members has shown a strong desire for NCIL to advocate on housing issues. With the rapidly changing legislative and political environment with the change of administration and the new Congressional session, the Housing Subcommittee has divided the advocacy goals into the following work groups: Accessible, Safe, Affordable, and Healthy/Non-toxic. With the new work groups comes an opportunity for NCIL members to be a part of the advocacy process. The Housing Subcommittee would like to invite those interested in housing, to contact NCIL staff person Jason Beloungy at Jason@ncil.org or 202-207-0334. Note that all Subcommittee members must be individual NCIL members.

Op-Ed: Singer Rebuttal; Why We Must Not Ration Health Care

By Eleanor Canter

In last Sunday's edition of the New York Times, Peter Singer made a lengthy attempt to convince the American public that health care must be rationed, supported by classic utilitarian bioethics. Utilitarian bioethics is based on the premise that the distribution of resources is a zero-sum game, meaning that the losses of one individual can be neutralized by the gains of another. Through his meandering examples, he seeks to convince us that utilitarian bioethical principles are a given and that anybody who has any common sense at all agrees that when the cost of medical treatment exceeds a person's " value", it is economically efficient to withhold treatment. But he does not only believe that it is economically efficient, Singer believes that this barbarous philosophy would lead to an overall net increase in wealth and happiness. His conclusion is that it is morally tenable to apply monetary considerations to the value of individual lives.

I will put aside for now the fact that he is a proponent of eugenics, the practice of eradicating people with undesirable traits from the general population by a variety of means, and focus only on the arguments he presented in this opinion editorial. Singer's first assumption is that is impossible not to ration health care; that rational people simply disagree on the degree to which it should be rationed.

He argues that health care is already rationed because of the inherent scarceness of the resource and cites the woeful inadequacies of our current system as evidence that rationing is inescapable. Is it patently ridiculous to portray health care as an inherently scarce resource in the richest and most powerful nation in the world. The current state of our health care system and the crushing effect its having on our economy have a direct correlation to the choices we have made and the priorities we have chosen as a nation. Since we have chosen to make war, corporate subsidies, and tax cuts to the wealthiest Americans a priority, health care is indeed a scarce resource that is unfairly rationed. It does not follow, however, that government-endorsed rationing is the solution to the problem or that health care must always be a scarce resource.

Singer goes on to argue that measuring the good achieved by health care by the number of lives saved is "too crude". To him, it is obvious that "saving one teenager is equivalent to saving 14 85-year-olds" and that "restoring to nondisabled life two people who would otherwise be quadriplegics is equivalent in value to saving the life of one person". He must temper his argument in order to sound reasonable: "But just as emergency rooms should leave criminal justice to the courts and treat assailants and victims alike, so decisions about the allocation of health care resources should be kept separate from judgments about the moral character or social value of individuals." He has thrown this sentence in to let the reader know that some characteristics should not be taken into account when assessing the monetary value of an individual life, such as a violent criminal past.

From this point Singer digresses into the ethical morass the disability community has confronted him with throughout his career. He first presents his opponents' arguments: quality of life judgments about life with a disability made by people without disabilities are inherently flawed and reflect ignorance and prejudice, and people with disabilities invariably rate their quality of life much higher than people without disabilities imagine it. He imagines that we can "survey" people with disabilities and simply ask them "How many years of life are you willing to give up to have your medical condition cured?". Once we have completed the survey, he posits, we can then, free of any ethical concern, deny them life saving treatment based on the average answer.

With that little ethical glitch out of the way, Singer throws in one last jab at the disability community, "Disability advocates, it seems, are forced to choose between insisting that extending their lives is just as important as extending the lives of people without disabilities, and seeking public support for research into a cure for their condition." This is a classic logical fallacy. Singer is suggesting that if people with disabilities support research for a cure, then they are acknowledging that their lives are less valuable, and implicitly supporting his argument for rationed health care. He also suggests that people with disabilities cannot both place an equal value on their own lives and expect quality health care (of which research is only one aspect).

Disability advocates, who do by and large persistently insist that their lives have equal value, have never been opposed to comprehensive health care or research. We are opposed to a "cure or kill" mentality, the idea that our lives only have potential value, based on our ability to be cured, which is exactly what Singer is advocating. To claim that anyone should have to choose between health care and their basic human dignity is disingenuous of Singer and deeply offensive.

But Singer goes even further to suggest that the United States government should adopt his public plan to treat people with disabilities as only a fraction of a human life, forcing them to purchase private insurance for equal access to health care. "Rationing public health care limits free choice if private health insurance is prohibited. But many countries combine free national health insurance with optional private insurance… Those who opt for unrationed health care will know exactly how much it costs them."

This is ethically outrageous, but Singer is confident the public will adopt the proposed bigotry and integrate it into a government-run program when they observe the economic utility of discrimination. He states, "Will Americans allow their government… to decide which treatments are sufficiently cost-effective to be provided at public expense and which are not? They might, [if] the option of private health insurance remains available… and they are able to see, in their own pocket, the full cost of not rationing health care."

The fact that the discourse surrounding the health care discussion has actually sunk to the level of debating whether or not human lives have equal value makes me terribly sad. The first eugenics movement in America began because of chaotic social and economic conditions after the civil war. We must be very careful not to abandon our principles in uncertain economic times. We must answer Singer's selfish and un-American ideals with a resounding NO.

NCD Seeks Input on Emerging Trends / Issues Affecting People with Disabilities

The National Council on Disability (NCD) is gathering public input for a study of emerging issues and trends affecting the lives of people with disabilities. If you would like to participate, the entire document and information on how to respond is available at: http://www.ncd.gov/newsroom/publications/2009/NationalCouncilonDisability.doc. Please send your responses to NCD by September 15, 2009.

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

Act Now to Support Independent Living and Help Implement Olmstead: Applaud CMS for their Proposed Rule on Home and Community-Based Services Waiver Flexibility

2) National News

Healthcare Update

White House Release: Stable and Secure Health Care for America: How Health Insurance Reform Will Help People with Disabilities

Not Dead Yet and Coalition Denounce New York Times Magazine Article; Ask for Dialogue on Disability Issues

3) State News

Montana Contingent Meets Face-to-Face with Baucus, Drive Home the Need to End the Institutional Bias!

Michigan Congressman Addresses "Death Sentence" Concerns of Parent Claiming to Speak for Child with Disability

4) Announcements and Additional Resources

NCIL Awards Five Mini-Grants for Disability and Aging Collaboration

ADAPT Direct Action Organizing Training: Spring 2010

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

Act Now to Support Independent Living and Help Implement Olmstead: Applaud CMS for their Proposed Rule on Home and Community-Based Services Waiver Flexibility

ADAPT is hoping to secure a large number of comments from the Independent Living community on an ANPRM (Advanced Notice of Proposed Rule Making) regarding the provision of institutional waivers based on functional need, rather than diagnosis. ADAPT has made a point to express to CMS the need to allow Community Integration Services as a specific service reimbursable by Medicaid because of the fact that so many Centers lack the funds and staff to get and keep people out of institutions for good. If a 5th core service is implemented, additional funding will be necessary. Having one cost neutrality formula for this new waiver is important so that we don't continue the inequity between funding available in Nursing Facility versus Developmental Disability waivers.

The Comments for HHS' Medicaid Program Home and Community Based Services (HCBS) Waivers are due August 21st. Below are ADAPT's comments, for you to use to develop your comments. Feel free to share them with other groups and individuals you know who might want to comment too. We need as many positive comments as possible, so please get other people in your state or groups you are involved with to comment as well. We fully expect opponents of these changes to be commenting in force! This is a complicated issue, but ADAPT does a great job explaining it below! This is an excllent opportunity to advance the capacity of our Movement and free our people!

Read the full text of the ANPRM (Advanced Notice of Proposed Rule Making (PDF).

ADDRESSES: In commenting, please refer to file code CMS-2296-ANPRM. Because of staff and resource limitations, CMS cannot accept comments by fax transmission. Submit comments in one of four ways (please choose only one of the ways listed):

1. Electronically. You may submit electronic comments on this regulation to http://www.regulations.gov. Follow instructions under the ''More Search Options'' tab.
2. By regular mail: allow sufficient time for mailed comments to be received before the close of the comment period. You may mail written comments to the following address only: Centers for Medicare & Medicaid Services / Department of Health and Human Services / Attention: CMS-2296-ANPRM / P.O. Box 8016 / Baltimore, MD 21244-1850.
3. By express or overnight mail. To the following address only: Centers for Medicare & Medicaid Services / Department of Health and Human Services / Attention: CMS-2296-ANPRM / Mail Stop C4-26-05 / 7500 Security Boulevard / Baltimore, MD 21244-1850.
4. By hand or courier. See ANPRM for these instructions (above).

ADAPT's Comments CMS's Advanced Notice of Proposed Rule Making on HCBS Flexibility,
file code CMS-2296-ANPRM

ADAPT is a national grassroots disability rights organization fighting to reform the institutional-biased long term care (LTC) system. Developed 44 years ago, the current LTC system is based on institutional services as the default; is extremely costly, fragmented, and inefficient; and is disliked for a variety of reasons by consumers, providers, professionals, bureaucrats and politicians. The time for change is long overdue, and is necessary to be in concert with some of the health care reform principles being promoted by the President and Congress, namely consumer choice, cost effectiveness/savings, and covering more people.

ADAPT applauds CMS for issuing this ANPRM, which continues the transition to services based on functional need rather than disability/aging label. By giving states maximum flexibility to combine various populations and develop waivers based on actual need, not arbitrary disability or age labels, they will be able to better use scarce resources to serve more people with disabilities and older Americans.

Compliance with the ADA and the Olmstead Decision: Because the current system does not adequately target the functional needs of individuals, in some cases it actually discriminates against people who have severe disabilities that don't meet the specific medical or age eligibility criteria of existing HCBS programs who could otherwise meet their functional needs. For instance, a person with a traumatic brain injury, or someone born with fetal alcohol syndrome or Autism, might very well need the same services as an individual with a lower measured IQ score, but might not meet the IQ eligibility, or age of onset criteria that are often part of developmental disability waivers.

The current system continually puts states in jeopardy of violating both the Olmstead decision and, therefore, the ADA because they can't adequately meet the needs of severely disabled people in the current silo-funded waiver configuration. Olmstead plans typically follow this silo mentality, and so currently, states don't take a coordinated approach to providing long-term services and supports. This lack of coordination results in fragmentation, inefficiencies, and the ultimate outcome is that people do not get the customized services they need to live in the community. And too often, they may be forced to accept costly services that they neither want nor need. As we all know too well, one-size doesn't fit all, and rarely fits anyone properly. Silo-focused state agencies sometimes develop Olmstead plans in total ignorance of what the rest of their state is (or is not) doing. This isolated approach results in great difficulty for CMS, state politicians and advocates to easily comprehend or monitor exactly what is being done to comply with the Olmstead decision requirements.

Moving from a silo-type system to a person-centered, functionally-based system will assist in breaking the culture that has developed over time that assumes that people with disabilities and older Americans need "programs" to be pigeon-holed into, rather than we chose support services, based on functional need. This "program-pigeon-hole" culture helped create and expand costly, segregated nursing facilities, institutions, and other congregate settings. In the current system, different eligibility criteria for different programs sometimes require people to move from one program into another program with less or different services simply because they become older. The proposed functionally based waiver would fix this problem. Read More!

2) National News

Healthcare Update

Congress remains on their August recess. Many in Congress have been holding Town Hall events and Forums about the healthcare reform legislation in the House and Senate. There has been much in the news the last two weeks about angry citizens who are sending the message that they dislike much of what is going on or what is proposed. While an argument can be made on the sincerity of their passion and commitment, it cannot be argued that this helps the prospects for reform in any way. This is why NCIL has encouraged members to get out to these events and make your voice heard, and speak out about what people with disabilities expect in healthcare reform. While the loudest folks in the room have gotten the attention lately, their message does nothing to ensure that the healthcare and long-term care needs of people with disabilities are addressed. NCIL again encourages members to attend events to make our voices heard, because if we fail as a nation to reform the system, we'll see another generation of our brothers and sisters locked in institutions; or locked in their homes without access to basic care and support that will allow them to gain employment or participate meaningfully. Another generation of people with disabilities will find inaccessible clinics and examination equipment, and doctors that treat us as second-class citizens incapable of self-directed lives, instead of valuing and respecting our rights and abilities.

If we don't get vocal and fight those who want to protect corporate financial interests at the expense of our right to affordable, non-discriminatory healthcare and long-term care, we will have only ourselves to blame. We must stand up for what is right, for is needed, and for what will be one more step toward the freedom of Americans with disabilities. Again, NCIL would like to see the following in healthcare reform legislation:

• The language of the Community Choice Act, to allow anyone who is eligible for Medical Assistance the right to access Home and Community Based Services, and not be forced to accept long-term services and supports in a nursing home because that is what Medicaid unfairly mandates. This HAS NOT been included in any version yet!
  
  
• The language of the CLASS Act, which is a new long-term insurance option for people who are employed. If you pay into the system for a minimum of five years, and need assistance with 2-3 activities of daily living, you will get a cash benefit of roughly $65 per day (this amount has not been determined, but the minimum is $50/day and the highest estimates are $75/day. You can use this cash benefit any way you'd like, and there is no lifetime limit or cap. This language has been included in a House and Senate version, and we'd like to ensure that it makes it into the final bill!
  
  
• The language of the Promoting Wellness for People with Disabilities Act, which mandates the U.S. Access Board to establish minimum accessibility standards for diagnostic equipment in medical and dental clinics and disability cultural competency training for healthcare and dental professionals. A few bits of this have been included in the House, but we need the full language to be included.
  
  
• Ending the two-year waiting period for Medicare for people with disabilities. This practice continues today, and healthcare reform is an excellent opportunity to end it. The House and Senate bills have provisions to expand coverage to people who may fall into this category. NCIL supports that provision, provided the quality of the options are equal to or better than Medicare, and that those who would not fit into the options for expanded coverage are allowed to be in Medicare as soon as they were eligible.

NCIL also supports the following:

• No Pre-existing conditions exclusions. Insurance companies will be prohibited from refusing coverage because of medical history.
  
  
• No Annual or Lifetime Caps on Coverage Insurance companies will be prevented from placing annual or lifetime caps on coverage.
  
  
• Coverage for Durable Medical Equipment, Prosthetics, and Orthotics (DMEPOS). These products will be included in any new health plans.
  
  
• Increased Medicaid provider reimbursement rates. More providers will serve Medicaid clients when their reimbursement rates are increased to match to those of Medicare providers.

If you have questions about the priorities of Healthcare and long-term care reform, about the procedure to get the legislation passed, or other questions, please contact NCIL Policy Analyst, Jason Beloungy at jason@nci.org. Jason can be reached by phone at 202-207-0334 (toll-free: 1-877-525-3400), ext. 1008.

White House Release: Stable and Secure Health Care for America: How Health Insurance Reform Will Help People with Disabilities

Greater Choices for Americans with Disabilities

• Eliminate Discrimination in Obtaining Health Insurance: Health insurance reform legislation will prevent any insurance company from denying coverage based on a person's underlying health status, including genetic information.
  
  
• Make Health Care Accessible to Everyone: By expanding health insurance to all Americans and providing premium assistance to make it affordable, health insurance reform will significantly increase access to a choice of health insurance plans for individuals with disabilities. This will enable individuals who are employed to keep their jobs rather than giving up employment in order to receive Medicaid benefits.
  
  
• More Affordable Choices: Health insurance reform will create a health insurance exchange so you can compare prices and health plans and decide which quality affordable option is right for you and your family. In addition, some bills would provide a new voluntary insurance program that helps families deal with long‐term care costs if a loved one develops a disability.
  
  
• Expand the Medicaid Program: Health insurance reform will expand the Medicaid program to more Americans, including people with disabilities. This expansion will assist low‐income adults who have disabilities but do not meet the stringent requirements of the SSI program to receive Medicaid coverage.

Lowering Costs by Rewarding Quality and Cutting Waste

• Provide Deep Discounts for Medications in the Medicare "Donut Hole": For individuals with disabilities who are dually eligible for Medicare and Medicaid, prescription drug coverage through Medicare Part D leaves them at risk of hitting the "doughnut hole," or the gap in prescription drug coverage. In an historic agreement, the drug industry has agreed to provide individuals with a discount of at least 50 percent for medication costs that fall in this coverage gap, saving thousands of dollars for some enrollees.
  
  
• Financial Relief for Low‐Income Medicare Beneficiaries: Health insurance reform will simplify the application process for financial support for low‐income Medicare beneficiaries. It will also increase premium subsidies and decrease certain copayments for Medicare's drug benefit.

Assuring Accessible, Quality, Affordable Health Care for People with Disabilities

• Preventive Care for Better Health: People with disabilities are less likely to receive preventive care and are more likely to be diagnosed with screenable cancers at a later stage. By ensuring that all Americans have access to preventive care and investing in public health, health reform will work to create a system that prevents illness and disease instead of just treating it when it's too late.
  
  
• Improve Care for Chronic Disease: One in every 10 Americans experiences a major limitation in activity because of a chronic condition. Health insurance reform will encourage innovations in the treatment of these diseases to prevent disabilities from occurring and progressing.
  
  
• Promote High Quality Care: Health insurance reform legislation will establish medically driven priorities and standards on quality, require quality reporting by hospitals, and provide incentive payments for high quality performance. As a result, people with disabilities will have better information to support their health care choices.

Not Dead Yet and Coalition Denounce New York Times Magazine Article; Ask for Dialogue on Disability Issues

The National Council on Independent Living joins the entire disability community in denouncing Peter Singer's article advocating the denial of healthcare to people with disabilities based on a "quality of life assessment". Not Dead Yet has penned a letter to New York Times Magazine Editor Gerald Marzorati calling for a serious dialogue on its reporting of disability issues and its stand on rationed healthcare for people with disabilities.

"For The New York Times Magazine to publish an article calling for health care rationing that would discriminate against people with disabilities one week before the anniversary of the Americans with Disabilities Act shows how out of touch the leadership at The New York Times Magazine is," said Not Dead Yet President Diane Coleman. "Peter Singer is a sloppy ethicist who should not be given a forum by a publication as credible as The New York Times. His piece, published at a key time in the health care debate, gives fodder to critics whose goal is to kill any reform by raising the specter of government supported euthanasia."

The letter, written by Stephen Drake, Research Analyst for Not Dead Yet, states:

"…This is Peter Singer's most direct assault on the value of the lives of people with physical disabilities past the age of infancy that we have read. His policy proposals allowing for the killing of newborns with disabilities and people with significant cognitive disabilities are already well known.

While this is a bolder assault than we have seen from Professor Singer in the past, it's hardly surprising. What's surprising and deeply disturbing is that the NY Times editorial staff have sought him out as a writer on more than one occasion..."

The coalition has requested the following of The New York Times Magazine:

1. The NY Times staff needs to define and clarify its understanding of disability as a basic human rights issue.
   
   
2. If the current stance of the NY Times is that the lives of people with disabilities are, in fact, a drain on health care sources, it should be stated on record.
   
   
3. Discuss training in the basics of covering disability in news stories - beyond the "human interest" and "medical" angles.
   
   
4. Cover the difference between "analysis" and "appealing to bigotry" in public policy discussions.

To read the letter in its entirety, visit: http://notdeadyetnewscommentary.blogspot.com.

3) State News

Montana Contingent Meets Face-to-Face with Baucus, Drive Home the Need to End the Institutional Bias!

This is the report from the Montana orange-wearing contingent that met with Senator Baucus on Thursday, August 13, in Missoula.

After a series of unannounced visits to the state offices of Sen. Max Baucus where we stridently advocated for inclusion of long-term services and supports in healthcare reform, we finally got a face-to-face meeting with the Senator here at home in Montana. Since some of us have tried repeatedly with no luck to gain personal contact over the past few years, we were appreciative of this meeting, which came during a time when Sen. Baucus has an especially full plate. The meeting went well, and while we got no promises, we did leave with more hope than we have felt in some time on the potential to eliminate the institutional bias in the Medicaid program.

Our conversation was about the institutional bias, including long-term services and supports in health care reform, and passing the Community Choice Act (CCA). Sen. Baucus brought up the CBO scoring on the CCA and we reminded him that the CBO recently backed off their original scoring and now agree with the numbers produced by researchers Mitch LaPlante, Charlene Harrington, and Stephen Kaye. We mentioned several recent pieces of research that show the efficacy of Home and Community-based Services, and he is interested in getting all the studies we have regarding lower costs for HCBS compared to nursing homes. He asked us to provide this information directly to David Schwartz, Senator Baucus' healthcare expert on the Senate Finance Committee. He also wants to know which states are doing the best with HCBS. We threw out a few states we know about, and would appreciate information on additional states that we can forward.

Our group included two men with MD (both are vent users) who talked about their life experiences. One emphasized the need for good quality staff in the community because his life quite literally depends on it, and the other talked about being forced into a nursing home in his home state of North Dakota when he started to use a vent, and four years later having to move to Montana in order to live a free life in the community where he is now in college. In addition, we made Sen. Baucus aware that while Montana supports vent users in the community, if Montana cuts optional services, and HCBS takes a hit, both Mark and Dustin would be forced into nursing homes out of state because MT nursing homes won't take vent-users. This reality really seemed to hit home with him and helped him understand why a federal change is needed, not just varying (or no) programs in the states.

We also mentioned that not doing something about eliminating the institutional bias has civil rights implications because there are many of us who believe Congress and the Administration are in violation of both the ADA and the Olmstead decision if Congress doesn't act to remove the institutional bias. This, too, seemed to get the senator's attention, and he suggested we get some good attorneys to look at that possibility as a way to force something being done. It sounded like he may also have his staff research this.

We told him that we understood he and the President have the same healthcare reform goals, including greater coverage (more people covered), better care, personal choice, and cost savings. We said that given those goals, it doesn't make sense to keep forcing states to provide the most expensive Long Term Service (nursing home/ICF-MR), which isn't peoples' choice and provides lower quality service, and all because the institutional bias remains in Medicaid! We then asked if Congress couldn't just get rid of the nursing home mandate, and just tell states in the Medicaid law that they must provide LTSS, and then let states and individuals choose what they want, in essence ending the institutional bias.

IT WAS LIKE A LIGHTBULB WENT ON!!! Sen. Baucus said, "You know, that might just be the way we get at this issue." (Substitute LTSS for NF/ICF-MR in the list of mandated services).

There were a couple of other side points, but in the end, we gave him the Community First Choice paper developed by ADAPT and on the top we wrote "End the Institutional Bias" as OUR first choice, but if we can only get the state option, please consider this. He gave us Dave Schwartz' direct line and his own personal email, told us to stay in contact with Dave and get back with him when Congress gets back in session, as well as forward any ideas, plans, things that would help him make the argument in the meantime.

So that's where we left things, and now we have some homework and follow-up to do.

The contingent included Mike Mayer, Executive Director Summit ILC; Bob Liston, ADAPT, Board President, Summit ILC; Travis Hoffman, Advocacy Coordinator, Summit ILC; Jude Monson, Program Manager, Summit ILC; Mark Boatman, ADAPT, UMT Journalism student, vent-user, and nursing home survivor; Dustin Hankinson, ADAPT, vent-user, Disability Rights Montana Board Member, active in Democratic party; Teresa Martinosky, ADAPT, disability rights advocate; Marsha Katz, ADAPT; Casey Shultz, LPN.

Michigan Congressman Addresses "Death Sentence" Concerns of Parent Claiming to Speak for Child with Disability

At a town hall meeting last week, an angry constituent, who was joined by his son with a disability, made his feelings know about Congress' efforts to overhaul the healthcare system in America. Because of the disruptive antics of some of the members of the audience, Congressman Dingell did not get a chance to accurately respond. The link below contains a letter from Congressman Dingell to the constituent, outlining how the legislation in the House will benefit people with disabilities. Congressman Dingell's letter provides good insight, but fails to address the institutional bias in Medicaid, despite making the assumption that the constituent's son may be on Medicaid. He does reference the CLASS Act in his letter, which is another priority for NCIL. Read the article.

4) Announcements and Additional Resources

NCIL Awards Five Mini-Grants for Disability and Aging Collaboration

The National Council on Independent Living is pleased to announce the recipients of five (5) $4,000 mini-grants that were selected because of their proposals for collaboration, education and exchange of information and resources between Independent Living community and the aging community. "These five recipients provided exemplary ways to help bridge the gap between the communities that will benefit people with disabilities and older adults beyond the life of the grant", stated NCIL Executive Director, Kelly Buckland. The five awardees are:

• Northern West Virginia Center for Independent Living - Morgantown, West Virginia
• Connecticut Association of Centers for Independent Living - Hartford, Connecticut
• Vermont Center for Independent Living - Montpelier, Vermont
• Center for Accessible Living - Louisville, Kentucky
• Granite State Independent Living - Concord, New Hampshire

The applicants were selected by a panel of public and private sector experts in aging and disability, long-term supports, and research and program development. NCIL has awarded these mini-grants for the second year in a row because of the strong belief that the aging and disability communities need to be full and committed partners in the expansion of information, resources and services. NCIL also believes that such grants strengthen the role of the Center for Independent Living in establishing or enhancing ADRCs.

The U.S Administration on Aging (AoA) and the Centers for Medicare and Medicaid Services, (CMS) both part of the U.S. Department of Health and Human Services, launched the Aging and Disability Resource Center (ADRC) grant initiative to promote the integration of long-term care information and referral services, benefits and options counseling services, and access to publicly and privately financed services and benefits for those in need of long-term supports and their families. ADRC grants were awarded to 43 states beginning in 2003, and these states have opened ADRCs that serve older adults and individuals with disabilities. NCIL has been working closely with the AoA to bridge the gap between the disability community and the aging community. NCIL was awarded a second grant by The Administration on Aging to help implement intensive technical assistance and peer-to-peer mentorship to ensure inclusion and collaboration between aging and disability organizations in establishing a new ADRC or enhancing an existing ADRC.

ADAPT Direct Action Organizing Training: Spring 2010

MAD AS HELL AND DON'T WANT TO TAKE IT ANY LONGER?

DON'T MOURN…ORGANIZE! Form an ADAPT GROUP!

The ADAPT Community will be hosting a "Direct Action Organizing Training" Spring 2010, in Memphis, Tennessee. Topics Covered:

• The Power relationship
• Picking an Issue
• Winning Strategies/Tactics
• Organizing a "Direct Action"
• Negotiating Getting to yes
• Pitchfork Approach to Social Change
• Forming an ADAPT Group

For information: contact Bob Liston at adaptbob@gmail.com; 406/544-5137 (cell); 406/829-9495.