Thursday, January 25, 2007

Statement of Solidarity for the Dignity of PWDs..

A Statement of Solidarity for the Dignity of People With Disabilities: A Reaction to, against the "Ashley Treatment"..

Resource: People First of Georgia.

Monday, January 22, 2007

MH Press Conference: Georgia State Capitol, Tuesday, January 23, 9:00am..

Related to a previous blog post regarding Andy Miller and Alan Judd's AJC articles, forwarding the following in its latest version to hit my inbox.. Resource thanks go out to my friends and mentors over at disABILITY LINK.. In their words,

This is an opportunity for cross disability advocacy - concern for the "services" people receive in state institutions - whatever their disability label.

Thanks for always being there.. :WINK:

Speaking elsewise most respectfully from these shoes that have been there (else it would never have crossed my mind to even say it, ya know, ya know?): To those who will tokenly stand out in this latest mess that is our state's mental health care system, psychiatric survivors will invariably seek you out as the kind and knowing soul who is saying what they wish they had the stremgth and position to say themselves that very moment, too..

When these sometimes otherwise labeled "consumer survivors" do reach out, answer their phone calls and return their emails, even if it's just to say, "I really don't have an answer for you in your specific case.. You need to take the next step forward by speaking with [these people].." The Life most assuredly in crisis at the other end will 1) appreciate your honesty and integrity and 2) appreciate you are not just in it for the limelight..

Press Conference will be given jointly by the Mental Health Services Coalition--*ALL MENTAL HEALTH-FOCUSED ORGANIZATIONS* (strength in numbers and unity)

Tuesday, 2007-01-23- 9:00am
Senate Press Office
Paul D. Coverdell Leglslative Office Building, Room 201
Atlanta GA State Capitol

Please call, email, write, arm twist or hawg tie your State Senators and Representatives to come.

Nora Lott Haynes

Crossposted: Georgia Disability Advocates' Calendar.

Sunday, January 21, 2007

Left, Right, Center, Center of Right, Center of Left..

Human Life.......

Friday, January 12, 2007

CMS Press Release: 17 States Receive Grants for Alternatives to Institutional Care..

Yeah, it wasn't missed by these fingertips that Georgia didn't make the cut for these grants.. Don't know what it is, but Land of the Olmstead decision and we always seem to be among the last to implement things.. :(

January 12, 2007
CONTACT: CMS Public Affairs
(202) 690-6145


Seventeen states will receive more than $23 million in grants for FY 07 and up to $900 million over 5 years for demonstration programs that will help build Medicaid long-term care programs to keep people in the community and out of institutions.

Today’s awards, announced by Leslie Norwalk, acting administrator for the Centers for Medicare and Medicaid Services (CMS), are the first round of grants that will total $1.75 billion over five years (2007-2011) to help states shift Medicaid’s traditional emphasis on institutional care to a system offering greater choices for individuals and a full range of home- and community-based services. This Money Follows the Person (MFP) "rebalancing" initiative was included in the Deficit Reduction Act of 2005 (DRA) currently being implemented by CMS.

"There is more evidence than ever that people who need long-term care prefer to remain in their own homes and communities whenever possible," Acting Administrator Norwalk said. "States will also get more for their money by giving the elderly and people with disabilities more control over how and where they get the Medicaid services they need. With these grants, the states propose to transition over 20,000 individuals from institutions and into community settings.

"Because experience shows that money following the person’s own preferences improves satisfaction and can reduce Medicaid costs too, we intend to continue taking steps, such as those taken through these grants, to remove barriers, real or perceived, that prevent them from participating fully in community life."

The Medicaid program traditionally pays for care for elderly and disabled individuals living in institutions who need help with activities of daily living. Previously, in order to fund home and community-based services, states had to establish a "waiver program" apart from the approved State Medicaid plan.

To assist states in offering greater choices, the DRA made changes in Medicaid that will allow states to add home- and community-based services to their permanent array of benefits without having to go through a waiver program. Under a DRA provision separate from the MFP initiative, states now have the option to provide home and community-based services without a waiver program.

States receiving grants today under the MFP initiative (see list below) will design programs with four major objectives:

  • Increase the use of home and community-based, rather than institutional, long-term care services;
  • Eliminate barriers or mechanisms that prevent Medicaid-eligible individuals from receiving support for appropriate and necessary long-term services in the settings of their choice;
  • Increase the ability of the state Medicaid program to assure continued provision of home and community based long-term care services to eligible individuals who choose to move from an institutional to a community setting; and
  • Ensure that procedures are in place to provide quality assurance for individuals receiving Medicaid home and community-based long-term care services and to provide for continuous quality improvement in such services.

All states were eligible to apply for participation in the five-year demonstration that requires a commitment to participate in the demonstration services for at least two consecutive years. A second round of state grants may be announced later this year using 2007 grant money.

States receiving grant funds may be eligible to receive a higher percentage of federal matching dollars to help cover the costs for people moving out of institutions and into community settings. The higher matching rate will be applied to certain services provided to an individual for a one-year period after the individual moves out of an institution and into the community. The state must continue to provide community services after that period as long as the person needs community services and is Medicaid eligible.

"These demonstration grants are a clear sign of our continued commitment to expand choice to all individuals wanting to live meaningful lives in the community," acting administrator Norwalk said. "These grants will help give them the independence to live at home and be an active part of their communities."

For more details about the New Freedom Initiative, of which this demonstration is part, visit the CMS (New Freedom Initiative) web site.


State -- FY 2007 Award Amount

  • WI -- $8,020,388
  • NY -- $192,981
  • WA -- $108,500
  • CT -- $1,313,823
  • MI -- $2,034,732
  • OK -- $3,526,428
  • AR -- $139,519
  • MD -- $1,000,000
  • NE -- $202,500
  • NH -- $297,671
  • CA -- $90,000
  • IN -- $860,514
  • TX -- $143,401
  • SC -- $34,789
  • MO -- $3,398,225
  • IA -- $307,933
  • OH -- $2,079,488
  • Total -- $23,750,892

NIH Press Release :: COPD (Chronic Obstructive Pulmonary Disease)..

U.S. Department of Health and Human Services
NIH News
National Heart, Lung, and Blood Institute (NHLBI)

FOR IMMEDIATE RELEASE: Friday, January 12, 2007

CONTACT: NHLBI Communications, 301-496-4236, e-mail:


WHAT: COPD is the fourth leading cause of death in the U.S. and is expected to be the third leading cause of death by 2020. An estimated 12 million Americans are diagnosed with COPD and an additional 12 million are believed to have the disease, but are not yet diagnosed.

In conjunction with the launch of a new national awareness and education campaign on COPD, the National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health, in partnership with the COPD community, is sponsoring a panel discussion to highlight the problem of COPD and provide an update on current research and future treatments. Patient advocates, leading physicians, and scientists will discuss the growing burden COPD places on the individual, the family and society and how the science has informed the art of caring for the whole patient with COPD.

Following brief remarks on COPD and the campaign, there will be a question and answer session with the speakers.

SPEAKERS: Elizabeth G. Nabel, M.D., Director, NHLBI
James Kiley, PhD., Director, Division of Lung Diseases, NHLBI
Grace Anne Dorney, COPD Patient

SCIENTIFIC PRESENTERS: A. Sonia Buist, M.D., Oregon Health Sciences University
Bartolome Celli, M.D., St. Elizabeth's Medical Center, Tufts University, Boston
Ronald Crystal, M.D., Weill Medical College of Cornell University

CAMPAIGN PARTNERS: Butch Pallay, MD, Board Member, American Academy of Family Physicians
David Ingbar, MD, President-elect, American Thoracic Society
Terri Weaver, PhD, Board Chair, American Lung Association
Mark Rosen, MD, President, American College of Chest Physicians

WHEN: January 18, 2007; 9:00 a.m. - 11:00 a.m. ET

WHERE: Holeman Lounge, National Press Club

For more information about the COPD campaign, please visit,

Part of the National Institutes of Health, the National Heart, Lung, and Blood Institute (NHLBI) plans, conducts, and supports research related to the causes, prevention, diagnosis, and treatment of heart, blood vessel, lung, and blood diseases; and sleep disorders. The Institute also administers national health education campaigns on women and heart disease, healthy weight for children, and other topics. NHLBI press releases and other materials are available online.

The National Institutes of Health (NIH) -- The Nation's Medical Research Agency -- is comprised of 27 Institutes and Centers and is a component of the U. S. Department of Health and Human Services (HHS). It is the primary Federal agency for conducting and supporting basic, clinical, and translational medical research, and investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit

This NIH News Release is available online.

ILRU/NCIL Online Course: Introduction to Olmstead and Community..

The IL NET is a partnership of ILRU and NCIL. On-line courses are offered with the on-line facilitation support of Utah State University.

COURSE DATES: February 5-March 2, 2007



TARGET AUDIENCE: Center and SILC staff, managers, and executives, as well as board members. This is a beginner to intermediate level course.

PURPOSE: Participants will learn about the background and significance of the U.S. Supreme Court Olmstead decision. They will examine a framework for analyzing disability policy that may be used to determine if state and federal laws and programs really support the rights of persons with disabilities. They will also better understand how the ADA formed the basis for the Olmstead Decision and the importance of that decision for people with disabilities. Participants will better understand how and why individuals with disabilities can plan and direct their own services. Additionally, the participants will focus on using the concept of "consumer direction" to support the choices of those who want to leave institutional settings (such as nursing homes) and live in the community with the supports that they need.


A full course calendar is on the ILRU Web site at: Calendar.

PAYMENT INFORMATION: The course fee is $65 per participant. Payment may be made by credit card through the Web site at the time of registration. Credit card orders are also accepted by phone at 713.520.0232 ext. 130. Do not send credit card information by e-mail, since such transactions are not secure. Checks or money orders are also accepted and should be mailed with a completed application form. Return your completed registration form and payment to:

2323 S Shepherd, Suite 1000
Houston, TX 77019

Related links:

ONLINE COURSES FROM ILRU: This online course is presented by the IL NET, the national training and technical assistance project for centers for independent living and statewide independent living councils. The IL NET is operated by the Independent Living Research Utilization (ILRU) Program at Memorial Hermann | TIRR in partnership with the National Council on Independent Living (NCIL). Online course implementation is facilitated by the Interdisciplinary Training Division of the Center for Persons with Disabilities, Utah State University.

OTHER QUESTIONS: Contact Dawn Heinsohn at ILRU, 713.520.0232 ext. 130

Crossposted: Georgia Disability Advocates' Calendar.

FRIDA: "Speak Out About the Ashley Treatment"..

Ok, thanks to personal health, this one is a couple days late in finding its way out of my inbox, BUT.. No time like the Present, as they say, for letting those involved in Ashley X's treatment know what you think.. A HUGE thank you to the originators for posting email addresses for those of us who don't frequent the phone very often..

Resource for this information was a member post over at the Disability Convention Yahoo! group..

PS.. My view on the same..?

  • That a human being's, that a person's "self" was taken from them..
  • That this will set a very sad, very sick precedent..
  • That Ashley's parents may indeed have believed that what they did was "the right thing to do under the circumstances"..
  • That the Lives of that many more of my friends with disabilities may now be seen as in jeopardy..
  • That Life itself seems to just keep losing value in the eyes of so many people.. What gives them the right..?

ACTION ALERT: Speak Out About the Ashley Treatment
Fax, E-mail, and Phone Campaign

Feminist Response in Disability Activism (FRIDA), with the support of Chicago ADAPT (American Disabled for Attendant Programs Today), the national ADAPT community and Not Dead Yet (NDY), invites you to speak out about the Ashley Treatment.

Our Targets: Seattle Childrens Hospital staff involved in the case of nine-year-old Ashleys growth attenuation and sterilization, as well as Melinda Gates, chair of the Seattle Childrens Hospital fundraising committee and Susan Macek, Director of Communications for Seattle Childrens Hospital.

Why: To oppose their permission of what is now known as the Ashley Treatment, and to condemn further permission of such treatments for children with disabilities whose lives are not otherwise at risk.

When: Tuesday, January 9, 2007, starting at 9 am in your time zone.

Contact Info:

Dr. Douglas Diekema, 206-987-2380
B-5520 Emergency Medicine
4800 Sand Point Way NE
Seattle, WA 98105
Fax: (206) 987-3836

Dr. Daniel F. Gunther
Phone: (206) 987-2380
M1-3 Endocrinology
4800 Sand Point Way NE
Seattle, WA 98105
Fax: (206) 987-3836

Melinda Gates
PO Box 23350
Seattle, WA 98102
Phone: (206) 709-3100
Fax: (206) 709-3252

Susan Macek
Director of Communications, Seattle Childrens Hospital
Phone: (206) 987-5201
Pager: (206) 469-6310

Ashley is a nine-year-old with a severe cognitive disability. In order to keep her small and more easily cared for by her family, doctors at Seattle Childrens Hospital are having her undergo hormone therapy to stunt her growth. In addition, they surgically removed her breast buds, uterus and appendix. The Ashley Treatment, as her parents call it, is a medical fix to serious social problems we face in America today. The first of these problems is a lack of quality home-based services for people with disabilities. The second is the social attitude that people with disabilities are less than human and therefore fair game for experimentation. The third is a lack of understanding of disability vs. illness: as Joe Hall of South Carolina has stated, "When I was born my parents knew that I would never walk, but they would have never thought it would be acceptable to cut my legs off."

To review Ashleys parents blog, please see:

To review one of the original articles as reported by the BBC, please see:

We need to let the Seattle Childrens Hospital and its fundraising Chairperson know that the Ashley Treatment has not gone unnoticed by those of us who live with disabilities.

For more information, AND TO KEEP US POSTED OF YOUR ASHLEY TREATMENT ACTIVITIES, please call Sharon Lamp at (847) 803-3258 or e-mail Amber Smock at

(Original) Source: Feminist Response In Disability Activism (FRIDA)

Crossposted at: Georgia Disability Advocates' Calendar.

Monday, January 8, 2007

"A Hidden Shame": AJC Investigation into Georgia Mental Health Care Hospitals..

***HIGH Trigger warning on this lead for consumer or psychiatric survivors***


PLEASE NOTE: The reporters and those who assist them are putting together a very extensive investigation into Georgia's mental health care hospitals.. In several places, they give readers the opportunity to provide feedback, either through online comment forms or a phone number for one on one contact..

Overwhelming amount of information regarding the Atlanta Journal-Constitution's newest investigation(s) into what they state as "at least 115 patients from Georgia's state psychiatric hospitals who have died under suspicious circumstances during the past five years".. The reporters have presented so much information, it would be taking a huge chance on copyright infringement with respect to reposting from this keyboard..

Theoretically, this series of articles all starts here:

A HIDDEN SHAME: About this series

Links to the related articles so far are provided on the left of the screen.. You'll most likely need an AJC free, somewhat lengthy online subscription to view while the information is up there..

For my friends who wish to have alternative formats available, you will need to inquire of AJC directly.. The reporters offer the following phone number for those wishing to contact them regarding this series of articles in particular:


Crossposted at: Georgia Disability Advocates' Calendar.