JFActivist

AFSCME Union Declares Support for the Community First Choice Option

From AFSCME:

FOR IMMEDIATE RELEASE

Thursday, December 10, 2009

An Important Step for Seniors and Individuals With Disabilities
AFSCME Declares Support for Community First Choice Option in Health Reform

Washington, D.C. - The American Federation of State, County and Municipal Employees (AFSCME) threw its full support behind a federal provision to increase personal assistance services to seniors and people with disabilities. These services include personal care and homemaking, and are provided in community settings by direct support workers.

"This is an important step toward ensuring the dignity and independence of seniors and individuals with disabilities," said AFSCME International President Gerald W. McEntee. "In our support for the Community First Choice Option, we will work for consumer choice, service quality and workforce stability."

AFSCME's International Executive Board voted unanimously today to support the Community First Choice (CFC) Option, a provision in Senate health care reform legislation to increase resources to encourage the adoption and improvement of state community-based attendant services and supports programs.

"Having a personal care attendant has meant that I can keep living in my neighborhood, that I can keep living my life. He is the best," said Sarah Pitts, a personal care consumer in Lake Elsinore, California. "Without him, I don't know what I would do. More people need this kind of assistance."

Personal assistance programs are not available in many states, and many states that offer such programs often significantly limit services. The field is characterized by low wages, few benefits and high turnover among direct support workers.

"My home health care provider works so hard for me and cares so much," said Marylin Hicks of Springfield, Missouri, a personal services consumer in Missouri's Consumer Directed Services program. "She, and all providers, should be paid fairly, because they are so important to our lives."

AFSCME represents more than 200,000 direct support workers nationwide. AFSCME is working on the federal and state levels to ensure that these programs are adequately funded, accessible to all Medicaid-eligible individuals who need them and available in more states.

Also check out the ADAPT press release on this new partnership.

>>>Download the ADAPT press release here

Comment Below: This is a HUGE victory to have this union on our side.  What can we do to maximize this partnership?

Action Alert: Send Stories of Inaccessible Medical Services and Equipment

*** Take Action ***  Report Problems Accessing Medical Services or Equipment: inaccessible tables, inadequate lifting practices at medical clinics, etc.

to Jennifer Wolfsheimer at 202-370-3210 or jwolfsheimer@equalrightscenter.org

From The Equal Rights Center (12/8/09):

New Initiative Examines Accessibility of Health Care System

 

In response to complaints about inaccessible medical services and equipment, the Equal Rights Center (ERC) has launched a new initiative aimed at eliminating this form of discrimination.  The initiative began after three ERC members who use wheelchairs called the ERC to report denial of services, inaccessible tables, and inadequate lifting practices at medical clinics in Washington, D.C. 

 

“The inaccessibility of basic medical equipment, such as examination tables, seriously compromises the quality of care individuals with disabilities receive,” said ERC Executive Director, Don Kahl.  “Not providing equal preventative and urgent care services to a large segment of our population is not only illegal but also a disservice to our entire country.”  

 

These complaints are not the first encountered by the ERC in addressing accessibility barriers.  In 2005 the ERC advocated for accessible medical facilities and reached a settlement with Washington Hospital Center, which mandated that medical facilities, such as examination rooms, examination tables and other medical equipment be made accessible.  The settlement also addressed inadequacies in policies and procedures to ensure that patients with disabilities receive the assistance they need to eat, drink, and otherwise care for themselves.

 

“A health center should be a place of safe harbor for all individuals,” said Jennifer Wolfsheimer, the ERC’s Disability Rights Manager.  “Equal treatment at health centers not only improves the wellbeing of the individuals who visit, but also improves the lives of the entire community through a more healthy and active citizenry.”

 

In an effort to ensure people with disabilities do not encounter similar forms of discrimination, the ERC has began an initiative to educate people with disabilities about their rights and health care providers about their responsibilities and, when necessary, advocacy and enforcement directed at those who violate the laws protecting people with disabilities.

 

If you or anyone you know have encountered accessibility issues at a health facility or if you would like to get involved in this initiative please contact Jennifer Wolfsheimer at 202-370-3210 or jwolfsheimer@equalrightscenter.org

Burning Bright: Musicians with Disabilities Live the Dream with 'Flame'

From ABC (11/27/09):

Flame's Members Say Disabilities Won't Stop Band From Making Music
N.Y. Band Members Live With Blindness, Autism, Down Syndrome
By MARY PFLUM and SUZAN CLARKE

Many start-up bands dream of achieving worldwide fame one day.

That the band Flame achieved the dream is remarkable in and of itself. But the band is extraordinary in another respect: Each musician has a physical or mental disability.

Indeed, Flame is the only touring band in the world to be wholly composed of disabled members.

The upstate New York band's members live with conditions that include Down syndrome, cognitive delays, autism, cerebral palsy and blindness...

>>> For the Full Article

>>> To Check out Flame's Rockin' website

Comment Below: Has anyone seen this group perform? Would you be more likely to see or book a band of musicians with disabilities?  Seeing members of our community living out their dream always inspires me to chase my own.  What are your dreams and how can our community support you in reaching them?

Department of Justice Files Briefs in Three States to Enforce Olmstead and Support Community Living

From the Department of Justice (12.2.09):

Briefs Filed in Three States to Enforce Supreme Court’s Olmstead Decision
by Tracy Russo

Last week proved to be a landmark for federal enforcement of the Supreme Court decision in Olmstead v. L.C., a ruling requiring States to eliminate unnecessary segregation of persons with disabilities and to move persons who can function in the community out of segregated facilities.

The Olmstead decision has often been called the Brown v. Board of Education of the disability rights movement. Earlier this year, President Obama issued a proclamation launching the “Year of Community Living,” and has directed the Administration to redouble enforcement efforts.

Last week, the Justice Department filed amicus, or “friend of the court,” briefs in three separate cases in Connecticut, Virginia and New York. Thomas E. Perez, Assistant Attorney General in charge of the department’s Civil Rights Division stated:

“As the Supreme Court determined in the landmark Olmstead v. L.C. case, unjustified institutionalization stigmatizes individuals with disabilities as unworthy of participation in community life. New York, Virginia and Connecticut can successfully provide community-based housing, such as scattered site apartments with supportive services, and the law requires them to do so to prevent unnecessary institutionalization.”...

>>> For the Full Post

Long Term Services and Supports in Health Reform: Safe for Now but the Debate Continues

From www.passtheclassact.org:

Dec 4, 2009 - Great News!  Early this afternoon, the Senate scheduled votes on two critical amendments to the Senate health care reform bill.  The first, introduced by Senator Sheldon Whitehouse (D-RI), was a “sense of the Congress” that the savings accrued from the CLASS Act should be used for the CLASS program.  The Whitehouse amendment passed by a resounding 98-0 vote shortly before 4:00 pm.

 

The second was introduced by Senator John Thune (R-SD) to strip the CLASS Act from the health care reform bill.  The Thune amendment needed 60 votes to pass.  When the vote reached 47-51 and it became clear that it would fail, the Thune amendment was withdrawn.

 

Despite these critical victories, the battle is far from over.  In fact, withdrawal of the Thune amendment may well mean that CLASS Act opponents in the Senate intend to reintroduce the amendment after getting a few more Senators in their camp.  Stay tuned……

From the Washington Post (12.5.09):

Senate pushes ahead on long-term care program
GOP fails in effort to cut key health-care reform funding sources
By Lori Montgomery and Shailagh Murray

...The Senate also voted to keep provisions to establish the Community Living Assistance Services and Support Act, or Class Act, despite concerns among centrist Democrats that the program would quickly run out of cash.

A majority of senators -- including 11 Democrats -- actually voted against Class Act, warning that congressional budget analysts say it would become a drain on the federal budget less than 20 years after enactment. But while the amendment, by Sen. John Thune (R-S.D.), garnered 51 votes, it fell short of the 60 needed for passage under an agreement between party leaders.

Class Act supporters hailed the decision, saying the program would offer a badly needed lifeline to seniors and disabled people trying to stay in their own homes. Workers would pay a premium in exchange for the promise of cash benefits of around $50 a day to be used for visiting nurses, medical equipment and home renovations, or to offset nursing home fees. A more expansive version of the program is included in the health-care bill approved last month by the House.

"The Class Act will offer hope to Americans with serious illnesses or injuries who can maintain their independence with the help of long-term care," said Sen. Christopher J. Dodd (D-Conn.), who ushered a version of the health package through the Senate health committee this summer in the absence of the committee's former chairman, Edward Kennedy (D-Mass.). Kennedy, who died of brain cancer, was a leading proponent of the Class Act...

>>> For the Full Article 

From the NY Times (12.2.09):

Room For Debate: Squeezing Money Out of Home Health Care
By THE EDITORS

Under the health care bills currently being debated in Congress, more than 30 million uninsured Americans would gain coverage. To help offset the costs, the Senate legislation would reduce Medicare spending on home health care services, which have grown in the push to keep Medicare patients out of hospitals and nursing homes.

Can home care agencies become more productive, as Congress assumes? Waste and fraud are a serious concern, but can these problems be effectively limited and does the current legislation address the challenges? [Click on the Names Below to Read their Perspectives]

• Stuart M. Butler, Heritage Foundation
• Donald H. Taylor, Jr., Duke University
• Grace-Marie Turner, Galen Institute
• Marilyn Moon, former Medicare public trustee
• David C. Grabowski, Harvard Medical School
• Harold Pollack, professor, University of Chicago

URGENT: Do You Still Care About Long Term Services and Supports?

National Call-In Day TOMORROW, Thursday, December 3rd

Call your Senators at this toll-free number: (800) 958-5374

Senator Gregg (R-NH) just spent some time on the Senate floor bashing the CLASS Act.  Senator Baucus (D-MT) (Manager of the health reform bill) interrupted him briefly to say, “Frankly, I’m no fan of the CLASS Act myself.”  

See below for info on a national call-in day tomorrow and for the need to collect stories ASAP.  Please feel free to adapt the alert [when you pass it along].  This is critical.  There will be an amendment to strike the CLASS Act.  We need a full-scale effort to build support for keeping CLASS Act in the bill when the amendment is offered.  

I believe this is an empowerment issue.  Some Senators have expressed the view that people with disabilities who need long term services belong in Medicaid!  That would mean continued impoverishment for life to qualify for needed supports.  We need the CLASS Act to offer an alternative to forced impoverishment in the future!

Marty Ford

From the Arc and UCP Disability Policy Collaboration (12/2/09):

Background:

The U.S. Senate is now debating its health care reform bill, the Patient Protection and Affordable Care Act. And while the Community Living Assistance Services and Supports (CLASS) Act has stayed in the bill this far, it could be stripped from the bill any day now.   In fact, we just learned that there will be an amendment to eliminate the CLASS Act from the bill.

 

Our contacts on Capitol Hill tell us that one of the biggest obstacles for the CLASS Act is misperception among Members of Congress and their staff that people with disabilities belong in the Medicaid program and cannot work.  We must set the record straight and let our Senators know that, while Medicaid is an essential safety net, millions of people who now have or later develop disabilities work and want to take personal responsibility for their long term care needs. This is an empowerment issue - People should not be forced into poverty to get the support they need.

 

You can help by doing two things:

 

1) Plan to participate *tomorrow* December 3 in a national call in day.  Join advocates from around the country in making our voices heard!  Please call both of your Senators.  The toll free number is (800) 958-5374.  Here is a Sample Script:

Hello. I am calling to ask Senator ___________________ to make sure the CLASS Act remains in the final health reform bill and to oppose any amendment to strip it from the bill. The CLASS Act will help people to remain independent at home.

 

 

2)           Tell us your long term services and supports story NOW.  Stories are being gathered to share during Senate debate on the health care reform bill. We are seeking personal stories that fall under two categories:

 

Looking Back - What could have been if the CLASS Act program had been available.  Story examples include:

•        You worked for many years and discovered that you were financially unprepared for your long term services and supports needs after you became disabled in a car accident.  If you had been able to pay into the CLASS Act program, you could have paid an attendant to help you remain in your own home and not been forced to move into a nursing home before it was necessary.

•        Your sister who has a developmental disability held a job for several years until her health worsened and she required assistance with daily activities such as transportation and meal preparation.  Had she been able to pay into the CLASS Act program, she could have paid an attendant to help her with these activities of daily living and remained employed.

•        Your wife became disabled after having a stroke.  Had she been able to pay into the CLASS Act program, she could have used the cash benefit to pay for services and supports in the state where you had planned to move to.  Instead, she had to spend down all her savings to qualify for Medicaid and you and your wife were unable to move.

•        Your father’s retirement savings were depleted to pay for his long term care needs.  If he had been able to pay into the CLASS Act program, he could have made the necessary modifications to his home to accommodate his wheelchair and covered his other needs instead of relying on you and your sibling who tapped into your own children’s education funds to help pay for his care.

 

Looking Forward - What could be if the CLASS Act program becomes available. Story examples include:

•        You just started your career.  If the CLASS Act program becomes available, you know that you can be take personal responsibility for your own care and be more self sufficient should you become disabled for any reason.

•        Your son has a disability and is currently employed.  If the CLASS Act program becomes available, he will be able use the cash benefit to purchase the services and supports that he needs to remain employed for as long as possible.

•        Your husband is starting to plan for his retirement. If the CLASS Act program is available, you know that, if he becomes disabled, you will not have to divorce him in order to keep his household income below the Medicaid eligibility level to receive long term services and supports.

•        Your mother is nearing retirement.  If the CLASS Act program becomes available, she can start paying in and supplement her private long term care insurance plan that provides limited coverage.

 

You can submit stories online at http://surveys.aahsa.org/EFM/wsb.dll/s/30g179 , or use the questions in this survey to help guide you in writing your story.  If you would prefer to just email your story (instead of the survey), please send it to acosta@thedpc.org

 

 

Thank you in advance for your advocacy and your commitment to improving the quality of life for millions of people with disabilities and older Americans.  For more information, see www.passtheclassact.org.

 

SC: Sex Assault Scandal Breaks while State Increases Funding for Institutions

From Patricia Harrison (11/20/09):

At yesterday's South Carolina Department of Disabilities and Special Needs Commission meeting, a spokesperson objected to Whitten Center being referred to as an "institution."  She claimed that Whitten Center should be called a "Gated Community" instead - no joke, she really said that.

I am all for families having a choice of safe residential options, including well run ICF/MRs, but here's some history on this particular "gated community" and what South Carolina is doing to force people who have disabilities into facilities like this:

Here's a report at http://www.goupstate.com/article/20081121/ARTICLES/811211009?Title=Whitten-Center-liable-in-sex-assaults

Whitten Center liable in sex assaults

Caregiver pleaded guilty to attacking 3 mentally handicapped clients

By Robert W. Dalton

Published: Friday, November 21, 2008 at 3:15 a.m.

Officials at the Whitten Center didn't believe John Doe when he told them he was being sexually assaulted by Daniel Maxwell Bradley, a caregiver at the Clinton facility for the mentally handicapped. They said Doe had a history of making false claims against employees.

That all changed when the FBI came knocking at the door, and agents didn't come empty-handed. They had photographs, taken by Bradley and shared on the Internet, of the assaults.

Bradley eventually pleaded guilty to sexually assaulting three residents...

Just last week, CMS approved an increase in reimbursement rate beginning Jan 1, 2010 of 70% for respite services provided to waiver participants who "choose" to receive their respite services in ICF/MR's like Whitten.  SCDDSN and CMS eliminated an option, which cost less than 1/3 the daily rate of ICF/MR services, where waiver participants could receive respite services at home for less than $70 a day.  CMS approved the elimination of some home based services and the reduction of others that the State claimed were required due to budget reductions.  BUT SCDDSN transferred more than $31 million of funds generated by the Recovery Act (federal stimulus funds) to a rainy day fund in July and about half the stimulus funds they will receive this year will be transferred to that rainy day fund, while home based services are being slashed and more people will be forced into these "gated communities."  This change in the MR/RD Medicaid waiver was approved by CMS, despite the fact that they knew about the failure to use tens of milions of dollars allocated to provide services and the failure of the State Medicaid Agency to protect residents of residential programs from abuse, neglect and exploitation, which was reported by the SC Legislative Audit Council:
 
http://lac.sc.gov/Reports/2008/DDSN.htm
 
When one parent asked the Chairman of SCDDSN this summer to please prevent these cuts and to maintain her son's home based services, the Chairman compared the parent's request to her own son's request that Santa Clause bring him a four wheeler for Christmas:  "Somebody's got to pay for it" she told the parent.
 
And 2009 is the Year of Community Living?  If you're as appalled as I am about CMS approving these changes, please contact your representatives in the U.S. Senate and House of Representatives to share your opinions.  Ask them to require South Carolina to comply with Olmstead and to give the new director of SCDDSN the funds she needs (which are now sitting in a rainy day fund) to run the agency and to protect people like Billy from these "Gated Communities."

-Patricia L Harrison

ABC to Air "A Place for All: Faith and Community for Persons with Disabilities"

From a Diva Communications Press Release (11/16/09):

Diva Communications' Interfaith Documentary Explores Pressing Issue of Faith and Persons with Disabilities

Diva Communications, Inc., a three-time Emmy award-winning programming and production company, has complete 'A Place for All: Faith and Community for Persons with Disabilities,' a unique interfaith documentary due to begin airing on ABC stations in December.  The documentary, produced in conjunction with the New York Board of Rabbis, had the support of an extraordinary lineup of faith groups including the National Council of Churches, the Evangelical Lutheran Church in America (ELCA), the Islamic Society of North America (ISNA), the United Methodist Church, the United Church of Christ and the U.S. Council of Catholic Bishops.  The faiths' relationship with persons with persons with disabilities is a critical issue since it is estimated that 1 out of 5 Americans has a disability.

'A Place for All' explores the courageous stories of persons with disabilities as the succeed in making their faith communities truly inclusive.  It features people such as Rabbi Darby Jared Leigh, a spiritual leader at Congregation Bnai Keshet in New Jersey and one of the handful of deaf rabbis in the world; members of ELCA's DAYLE program where Definitely Abled Youth unite at the 40,00 strong triennial Evangelical Lutheran youth gathering; Rev. Beth Lockard, the pastor of Christ the King Deaf Church; and Brandon Kaplan, a severely disabled boy with limited sigh and speech who recently had the privilege of becoming a Bar Mitzvah...

... ABC  stations nationwide will begin airing the program December 6, 2009 as a part of ABC's Vision and Values series, a presentation of the Interfaith Broadcasting Commission. Check your local station for times. 

>>>For More Information or To watch the trailer

>>>For A Listing of Stations and Times

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Join Us: Inaugural Organizer's Forum - Working Cross Disability

Justice For All Action Network (JFAAN) presents...

 

ORGANIZER'S FORUM!

This is a monthly one-hour call, open to all disability organizers, to provide ideas and resources to each other to support and expand community organizing among people with disabilities!

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

FIRST-EVER Organizer's Forum!

Tuesday, November 17 1-2 pm EST

Topic: Working Cross-Disability

Experiences of collaborations between different disability groups, what was challenging and what made it work.

Speakers:

Mike Bachhuber, Independent Living Council of Wisconsin, Inc.

Bill Henning, Boston Center for Independent Living

Courtney Jenkins-Atnip, Tennessee Disability Coalition

 

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

(If you haven't done a conference call before, at the set time, just call the number, listen to the prompt, and when it asks for the code, enter the code, including # sign. Then you will be connected!) 

Upcoming topics:

December 15: Social networking

January 19: Organizing State Coalitions

February 16: Media

March 16: Outreach and recruitment

April : Action strategizing

 

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