http://www.lgtinc.org en-us http://www.lgtinc.org N/A contact@lgtinc.org Sat, 04 Feb 2012 06:00:14 EST 20 http://www.lgtinc.org/articles/245/1/UPDATE%3A-Good-Morning-America--CMO%26%2339%3Bs-in-GA-and-Wall-Street-Journal-Article June 27, 2007   Dearest Advocates:   I wanted to give you an update from yesterday's advocacy email.  Thanks to so many of you that forwarded to me additional information that could be sent out to everyone!   If you would like to post your comments on ABC's website regarding the segment Good Morning America aired yesterday entitled "Rocky Transition From Public Medicaid to Private HMO's"…………  Here is the web link:   http://abcnews.go.com/GMA/OnCall/comments?type=story&id=3314626&GMA=true   Let's keep up the pressure on getting something done about the system. Even if you are not affected by the CMO system, please remember that Aged, Blind and Disability populations were almost put into CMO's this legislative session but due to our advocacy efforts was taken out!   We all need to be good stewards of tax-payers $$$- and that's not happening with the CMO program.  Only through communicating what the real issues are and educating those around us………are we going to receive the necessary change needed in the Medicaid system! Please help and get involved!   In addition- for those that did not get a copy of the Wall Street Journals article, it can be found by going to: http://biz.yahoo.com/wallstreet/070625/sb118254994081445264_id.html?.v=1   If you have comments regarding the WSJ's article, they can be sent to the reporter, John Hechinger at john.hechinger@wsj.com    UNITED… WE WILL MAKE A DIFFERENCE!   Sincerely, Heidi ============================================ June 26, 2007   Dearest Advocates:   Today on Good Morning America-ABC National News, they did a story titled "Rocky Transition From Public Medicaid to Private HMO's".  As many of you are aware, this has been a very difficult time for families and providers in the Georgia Medicaid system.  Please take a moment to see the segment at:   http://abcnews.go.com/GMA/OnCall/story?id=3314626&page=1   Also- if you could email ABC news letting them know about your personal struggles with the Medicaid system, that would be great. The more knowledgeable the general public becomes regarding the issues surrounding the Medicaid system…..The Better!  We need to do our part in educating those that don't understand the system (including our legislators and the Governor).  ABC News specifically talked about Georgia's Medicaid system.  I agree we need to be good stewards of taxpayers $$$, but we also have to take care of those that can't take care of themselves!!!!! Including our precious children with disabilities.  ; ; ; ;   Please let our voices be heard….."UNITED… WE WILL MAKE A DIFFERENCE!"   Comments can be submitted to ABC via the following web link (only 500 characters so be brief and to the point): http://abc.go.com/site/contactus.html?cat=Good%20Morning%20America     Education and building awareness of the issues is the key to success in making change in the overall Medicaid system! We as parents and providers must continue to help others understand the need for necessary services.  I do believe our children must be viewed as an INVESTMENT and NOT a Liability in Georgia!   ---------------------------------------------------------------------------------- In addition- the Wall Street Journal had an article on the front page of their newspaper yesterday titled "'Mainstreaming' Trend Tests Classroom Goals". Unfortunately, I was not able to pull the entire story from their website (you have to be a subscriber).  Here is the link for fyi:   http://online.wsj.com/article/SB118254994081445264-search.html?KEYWORDS=inclusion+education&COLLECTION=wsjie/6month   ------------------------------------------------------------------------------------- I hope everyone is having a great summer.   I will be issuing additional information regarding the proposed changes to the Georgia Babies Can't Wait Program and how you can get involved very shortly. Stay Tuned……….   Sincerely, Heidi   --Heidi J. Moore (Proud Mother to Jacob - 7 years old with Down syndrome & Jared - 5 years old) For more information about how Heidi can help you maximize your child's potential, please go to www.heidijmoore.com "Help The Children Now, So They Can Help Themselves Later!" The material contained in this e-mail is for general information only. It is not intended in any way to provide or offer legal advice. To obtain legal advice, please consult with your attorney or a qualified legal representative. For previous advocacy email's, please go to the following website: http://www.lgtinc.org/authors/41/Heidi-J.-Moore. To see how you can advocate for your child go to www.kidshealthcarega.org. Heidi J. Moore Wed, 27 Jun 2007 00:00:00 EDT http://www.lgtinc.org/articles/189/1/Gene-found-that-helps-combat-MS Gene found that helps combat MS A gene that helps to stave off the effects of multiple sclerosis (MS) has been discovered by scientists. A Danish-UK team found that a known risk gene for MS, called DR2b, is always partnered by a twin gene - DR2a. The researchers, writing in the journal Nature, said DR2a tempers the effects of the risk gene and reduces the severity of MS symptoms. They believe in the future the gene's symptom-fighting features could be exploited for potential treatments. There are about 85,000 people with MS in the UK. The precise cause of the disease, in which the body's immune system attacks the central nervous system, is unknown, but a range of genetic and environmental factors are being explored. Two-thirds of MS sufferers carry the pair of DR2 genes, but carrying the genes does not necessarily mean a person will go on to develop MS. Natural selection The researchers looked at mice that carried different combinations of the twin genes. They discovered the mice with just the risk gene, DR2b, had a form of multiple sclerosis with extremely aggressive symptoms. This is a new way to assess how genes contribute to autoimmune diseases overall Professor Lars Fugger Those carrying both genes were less likely to get MS, and if they did, they had a milder form of the disease. The scientists said they believed the two genes were interacting. They said the risk gene, DR2b was "influencing" the immune system to attack the body, while the DR2a gene was counteracting this attack and dampening the effects. Professor Lars Fugger, one of the researchers in the study and a clinical immunologist at the Medical Research Council Human Immunology Unit, Oxford University, said: "The DR2b gene clearly tells the immune system to go hard into battle against the body's own tissue, so it starts to work in a way that actually damages the person. He added that when the team looked through different populations, the genes were always found together. He said this was most likely down to evolutionary pressures. Assess "For this reason, natural selection has eliminated the gene on its own, but allowed it to be inherited only when it is accompanied by another gene [DR2a] which tempers its effect. "This is a new way to assess how genes contribute to autoimmune diseases overall." The researchers said they hope their findings may be useful in helping to find possible treatments for MS. Professor Fugger said that the mechanisms that reduce MS symptoms could potentially be exploited. Simon Gillespie, chief executive of the Multiple Sclerosis Society, said: "This is a very interesting finding which adds another piece to our understanding of the MS puzzle. "Genes are known to be one of a combination of factors which can lead to the development of MS. We share the researchers' hope that it could eventually play a part in helping to treat this very variable and unpredictable condition." Story from BBC NEWS: http://news.bbc.co.uk/go/pr/fr/-/2/hi/health/5379250.stm Published: 2006/10/02 00:03:03 GMT © BBC MMVI Alan Weinrib Mon, 02 Oct 2006 00:00:00 EDT http://www.lgtinc.org/articles/170/1/Healthcare-for-Kids-Rally-Flyer-and-Other-Information--Please-Distribute%21 September 19, 2006   Dearest Advocates:   Please find attached the "official" flyer for our upcoming Healthcare for Kids Rally to be held on November 4th at 9:30am at Georgia State Capitol.    The time has come for us to unite our voices to be heard....HEALTHCARE must be a priority for our children! This rally is being put together for everyone that has been impacted or has a vested interest in the Medicaid system (which includes the following: parents, providers, and concerned tax paying, voting citizens of Georgia....Therefore, everyone is impacted by this issue in the State of GA!)   At the rally, we will be discussing the following issues: + Eligibility + Access to care and provider networks. + Early Periodic Screening Diagnosis & Treatment Federal Requirements. + Burdensome Application, Appeal and Claims Process.   We encourage children to attend and plan on having some entertainment for them as well. It is going to be a family friendly event! We need to put a face to the children being impacted by poor decisions.   The color theme is RED.  Please try to wear red the day of the event.    We recommend that you either car pool with other families or take Marta. There is parking available but it might be easier to come together as a group!    We currently have a wonderful volunteer group of over 40 concerned citizens wanting to make a difference and change in the direction of Medicaid!  I am amazed at how many people are actively wanting to get involved.  If you would like to volunteer (still looking for people the day of the event to help with set-up/clean-up): please send Leanne Manning (leanne_d@bellsouth.net ), my administrative assistant for the Rally, an e-mail with the following information: Name, e-mail, phone numbers, where you live, and if you are a parent, provider,etc.   Also- if you know of a organization and/or person that would like to donate to the Rally, please let us know.  North Metro Miracle League (NMML) has graciously offered to be an administrator of funds for the Rally! Please see the attached flyer for further information. Thanks in advance for your help in this matter.    This is going to be the event of the year for Healthcare in this State....... Let's show our support!   Feel free to distribute this flyer to anyone you think would like to attend and post at therapy clinic's doctor offices,etc. WE need to get the word out about this event. The more people that show up the better........   We are voting citizens and need answers to the healthcare crisis in Georgia!   UNITED... WE WILL MAKE A DIFFERENCE!   Additional information can be found on our website: www.kidshealthcarega.org  Hope to see you there!   Sincerely, Heidi J. Moore Healthcare for Kid's Rally Coordinator   --Heidi J. Moore (Proud Mother to Jacob - 6 years old with Down syndrome & Jared - 4 years old) "Help The Children Now, So They Can Help Themselves Later!" The material contained in this e-mail is for general information only. It is not intended in any way to provide or offer legal advice. To obtain legal advice, please consult with your attorney or a qualified legal representative. Heidi J. Moore Tue, 19 Sep 2006 00:00:00 EDT http://www.lgtinc.org/articles/166/1/URGENT%3ASave-That-Date%3A-Children%26%2339%3Bs-Healthcare-Rally%21-11%7B47%7D4%7B47%7D06-at-9%3A30am September 1, 2006   Dearest Advocates:   The time has come for EVERYONE to get involved.......    We are planning a Children's Healthcare Rally at the State Capitol on Saturday, November 4th at 9:30am.  More information will be following but I wanted to make sure you SAVE THAT DATE!   We all need to speak up and have our voices heard for our children and the providers that service them.  This is an election year and we need to make sure the State understands OUR priorities must include healthcare for our children.   The Children's Healthcare Rally will involve some of the following issues:   1. Eligibility Issues for disability waivers (including the Katie Beckett Waiver). 2. Access to a viable provider network (including therapy!) 3. CMO concerns. 4. BCW Concerns. 5. Overall, administrative paperwork problems in the system!   As you can see, we will be advocating for all children with and without disabilities that require healthcare from the State.   The issue is...... all children need healthcare (which includes having service providers to perform those services!).   If you are interesting in getting involved, donating time, or money in helping make this be the most effective rally to get the lawmakers attention....please send me a BRIEF e-mail stating the following:   1. What you think you do to help the cause? 2. Contact information including: name, phone numbers, e-mail address. 3. Where you live? 4. Are you a parent, provider, friend, concerned citizen, etc?   A rally committee is being put together to help make this a successful event.  Thanks in advance for wanting to participate!   Let's show our strength in numbers....OUR VOTE COUNTS!    UNITED... WE WILL MAKE A DIFFERENCE!   Hope to see you there! More detailed information will be following shortly.    Sincerely, Heidi   --Heidi J. Moore (Proud Mother to Jacob - 6 years old with Down syndrome & Jared - 4 years old) "Help The Children Now, So They Can Help Themselves Later!" The material contained in this e-mail is for general information only. It is not intended in any way to provide or offer legal advice. To obtain legal advice, please consult with your attorney or a qualified legal representative. Heidi J. Moore Fri, 01 Sep 2006 00:00:00 EDT http://www.lgtinc.org/articles/162/1/CNN-Headline-News-and-Our-Jacob%21 Dear Family and Friends and individuals that want to see Jacob succeed in life:   I have exciting news........I was contacted by CNN Headline News two weeks ago about them wanting to do a consumer educational story on Down syndrome! They ended up coming out to our house last week and video taping Jacob in music therapy (many thanks to Jennifer, his Music therapists for being willing to participate on such late notice), crafts with the kids and an interview with me.   Here is the detailed information on when the show will air and where you can see it on the web.  The story will air on CNN Headline News on Monday, August 21.  It will air once an hour, from 1-6pm, at around 7-8 minutes past the hour (provided there is no breaking news).  It will also be fed out to CNN affiliates (around 800-1,000) the same day.  On Tuesday, August 22, the story will appear on http://www.cnn.com/2006/HEALTH/05/26/health.minute/index.html (Health Minute segment).  I really hope we continue to see stories like this in the media.....CNN asked me what was my goal for Jacob. I said " My goals are like any other parent. For Jacob to live a happy, healthy productive life and that I hope society sees my son for his abilities, not disabilities.  It's not that Jacob can't learn, he just learns differently and at his own pace! He is an amazing boy that happens to have an extra chromosome!".   Thanks again to everyone that has been on the "Jacob Team" for many years. We are all seeing the hard work paying off in his accomplishments!   Please take a moment after the segment airs next week and thank CNN for continuing to cover issues that are important to the disability world. (CNN was fantastic to work with on this project and really tried to understand the issues associated with families that have children with Down syndrome).  Building awareness is half the battle to acceptance in society and building a brighter future for our children!   You can send a quick thank you to the following general CNN feedback website: http://www.cnn.com/feedback/forms/form1.html?33   And here is the reporter, Judy Fortin contact info as well: http://www.cnn.com/feedback/forms/form4b.html?21   Let's keep up the positive media for children with disabilities!    I'm so proud of Jacob and how well he did in the interview!  Hope you enjoy! Sincerely, Heidi   --Heidi J. Moore (Proud Mother to Jacob - 6 years old with Down syndrome & Jared - 4 years old) "Help The Children Now, So They Can Help Themselves Later!" The material contained in this e-mail is for general information only. It is not intended in any way to provide or offer legal advice. To obtain legal advice, please consult with your attorney or a qualified legal representative. Heidi J. Moore Mon, 14 Aug 2006 00:00:00 EDT http://www.lgtinc.org/articles/78/1/Once-Upon-a-Week-in-Washington   Once Upon a Week in Washington by Michael Bailey   When the going gets weird," Hunter Thompson warned us, "the weird turnprofessional." Plenty of professional weirdness came to Washington, D.C., in September. Professional developmental disabilities advocates, parents and f unctionaries sor ted through one view of reality while Adapt took its message straight to the people who make decisions. One group was nice, in a weird way, and Adapt was, well, just weird, in a nice way. A s a remi nde r t hat politicians have issues that the "folks back home" care about ot he r is sue s t ha n ours, Cindy Sheehan brought her Camp Casey anti-war juggernaut to Washington at the same time.  I attended all three events. I learned the difference between synergy and entropy. And I got a good dose of gonzo-advocacy. The week began for me on Tuesday, September 20, when a cavalcade of 500 members of Adapt and their allies wound its way up Capitol Hill and into the officesof the leaders of the Congress of the United States. Senators Grassley (R - IA), Reid (D-NV) and Frist(D-TN) and Representatives Pelosi (D-CA), Barton (R-TX), Hastert (R-IL) and Delay (R-TX) found themselves confronted by people who had come to deliver a simple demand: "Don't target low-income and people with disabilities for budget and service cuts." The offices were finally cleared only after police arrived, ordered people to disperse, and made more than one hundred arrests. The next morning, Roll Call, the in-house newspaper of Congress, was filled with stories about Adapt's demands for no caps and no block-granting of Medicaid, demands for abandonment of the planned $10 billion Medicaid cut and passage ofMICASSA. Across town many of the same activists reappeared at both the home and the office ofHousing and Urban Development Secretar y Alphonso Jackson to ask for policy changes in HUD's Section 8 housing regulations. Eventually Jackson emerged from his office, listened to Adapt's demands, and agreed to take steps to address them. While waiting for Jackson, Adapt received a let te r f rom Democ rat ic Pa r t y C ha ir ma n Howard Dean supporting Adapt's position on fixing the dysfunctional disability service system. When at last the summit came, it was attended by people from nearly every state. Itcompleted its well-oiled agenda and went home having unanimously endorsed the idea that all people should live in their communities. It might be said that this, too, was good work for just a few days. But beneath the similarities lurk some very fundamental differences that defi ne the future of disability advocacy in America. Those differences raise troubling questions about whose interests are being served - those of people with disabilities, orthose of the organizations purporting to represent them. Two fancy words can help in a comparison of the ideal and the reality of the summit with those of Adapt. The fi rst is synergy: a fusion of different energies into a strong, single force. The other word is entropy: the gradual decline into random nonsensewhen a group is no longer able to cohere. While Adapt got that work accomplished, another group of disability advocates, re-searchers and administrators descended on Washington for the beginning of what was billed as a summit meeting on developmental disabilities. It was called "The Alliance for Full Participation." More t han t wo t housand people swarmed into t he giant, fashionable Washington Hilton for two days of meetings and trainings. The summit's sponsorsw e r e a W h o 's W h o o f m a i n l i n e  d i s a b i l i t yor ga n i z at ion s, i nc lud i ng the American Association o f Me n t a l R e t a r d a t i o n , the Arc of the U.S.A., the National Association of University Centers on Disabilities, the National Association of Councils on Developmental Disabilities, and Self AdvocatesBecoming Empowered. Few of the delegates were aware that the summit was, in large part, an experiment to learn whether these often feuding groups could actually co-exist under the same roof for a few days. The experiment had been endangered before it began by the threatened boycott of the summit by Self Advocates Becoming Empowered. SABE had returned to the planning table only after some personal coaxing, an apology for condescending behavior, and VIP signatures on a written protocol for how SABE members were to be treated.   The history of the summit's sponsoring groups is distinguished. Parents of children with disabilities owe a debt for work that the Arc and others did sixty years ago. The (mostly) mothers who made that happen had neither experience norfunding. They had nothing to lose and that's how they behaved. Commitment and a simple messageof justice are powerful tools. But once those tools have been used to good effect, they are hard to use again. The early history of disability advocac y was largely a struggle with bureaucracy. Bureaucracy is, by defi nition, a narrow and inwardlooking thing. Bureaucracies havea long and sad history of learning how to perpetuate and reproduce themselves while subordinating and even scoffi ng at their founding ideals of "justice," "freedom," and"independence." Those terms are hard to defi ne, and lack the precisionthat bureaucrats thrive on. Commodore Ja mes E l l iot t commanded the American gunboat"Niagara" on Lake Erie during the War of 1812. He is immortalized by his dying words: "We have met theenemy and they are ours." Disability agencies and organizations can rearrange that epigram to read, "We have met the enemy and they are us." Growing organizations have the bad habit of adopting the characteristics of their oppressors. A fearful reality sets in, imperceptible at fi rst. Well-meaning people begin to put the survival and prosperity of the organization ahead of its founding principles. All sorts of compromises can be rationalized when one believes that the world would be worse off without one's organization. Louis XV said it best: "After me, the deluge." Public funding of disability advocacy seems like a great idea. It is a great idea. There's only one problem: there's no such thing as a free lunch. Every grant, every allotment and every public dollar that comes to advocacy organizations is carefully restricted. Failure to comply with those restrictions - or having another part of the same organization engage in activity deemed insultingor unprofessional by, or dangerous to, the grantingagency - can endanger renewal of the funding. The confl ict between telling the truth and the need to hold on to their money creates that nasty condition, entropy. The two motives are no longer able to cohereand it is most often the money motive that stays and the reckless, glorious idealism that goes. Of course this is never obvious at the time. While talking of the need to "think outside of the box" organizations become so enslaved to theirmoney that no real dialogue is possible. Dissent is censored in two common ways: we must and we can't. Those rebukes to real discussion are always delivered matter-of-factly, with a sour face and condescending voice, as in "We must get the strategic plan done fi rst." Or, "We can't do civil disobedience - what would our partners in the Department ofHuman Services think?" Self-Determination, like Empowerment, has become one of thosegaseous items that expands to mean what people with power want it to mean. Summit-goers seemed oblivious to the narrow constraints under which they labor. The arcane minutiae of Section 1915 (b) (6) concurrent waivers got the royal treatment while issues like the bankrupt federal treasury, that endless war ofours, global warming, racism, dis-ableism, and the national addiction to for-profi t health care went unmentioned. The argument that these items have no bearing on disability issues only proves my point. If our planet becomes uninhabitable, if bureaucracies become even more racist, if eligibility for Medicaid becomes predicated on such total poverty that you can't afford bus fare to see your doctor, it will hardly matter that Medicaid made some small concession. T he summit ended with a u n a n i m o u s e n d o r s e m e n t o f community living. There was no condemnation of the states currently impr isoning 1,641 c hild re n -and t hat 's just c hildren -wit h developmental disabilities in their institutions. 93% of those children live in 20 states. The biggest offender is Iowa, home of Senators Grassleyand Harkin. Federal patronage to disability organizations comes to large extent from those two offi cials.The summit also made no effort to call for an immediate moratorium on new admissions. Self-Determination, like Empowerment, has become one of those gaseous items which expands to mean whatever people with power want it to mean. Notably absent from the summit's list of presenters was Tom Nerney or other true pioneers of the self-determination movement. This was not a meeting for sweeping new ideas. After the summit, Nerney called it "lost opportunities and a failure to adopt bold strategies." He also named to this reporter the people who had not been invited to present, which list happensto coincide with the list of individuals and organizations who signed Not Dead Yet's amicusbrief to the Supreme Court opposing physician assisted suicide. Many delegates seem unaware that true selfdetermination passed away some years ago in favor of the dictates of Medicaid rules. But the conference organizers know it and chose to not alienate "our federal partners" by bringing it up. There was no mass movement from fashionable Dupont Circle to the less affl uent Holiday Inn on C Street where the Adapt action was headquartered. No march in solidarity with MiCassa. Just a pandering to thefi ction that the Bush people share our goals. No one believes that, but everyone opted to not offend. "Wecan't do that!" The summit was addressed by the wise and charismatic Martin Luther King, III. He was warmly received by an audience anxious to see themselves as spiritual heirs to his father. As I heard him speak, I wondered if I were the only listener thinking that if Martin Luther King, Jr., had operated the Southern Christian Leadership Conference with a federal grant, there would have been no bus boycott, no letters from the Birmingham jail, no march on Washington. There would have been no "I Have a Dream Speech" since all of the dreamers would have been purged. The delegates to the summit are good people. Most of them want to change the world, and for the better.But working within a publicly-funded structure does, infac t , limit what they can talk about and what they can do. A foggy myopiadescends. A comparison b e t w e e n  t h e A d a p t  a c t i v i s t s and t he summit delegates could be interesting. One point of comparison might be the question of who paid to get them to Washington. Of the 2,000 delegates to the summit, very few, if any, paid out of their own pockets to attend. Adapt, on the other hand, is made up of some of the poorest people in America. All but a few of its activists paid their own way to DC and shared hotel rooms with as many as eight people to help pay their hotel bills. That requires real sacrifi ce. One wonders how many people would have attended the summit if they'd had to share their hotel rooms with strangers. Ian Kuenzi is 21 years old. He lives in Lawrence, Kansas, and came to Washington with Adapt on his own money. He has been attending actions since he was 15. I askedhim why he made the effort. "Direct action works," he said. "It is important to my way of life. I am making a difference not just for myself but for others." Kuenzi was arrested in Senate Majority Leader Frist's offi ce during the Adapt action. "My fi rst arrest," he told me, smiling. "The cops asked if I wanted to leave. I told them no."Was the arrest worth it? "Hell, yes! Wehave the right to free assembly. This brings it right into t he i r space and makes them aware of us." A delegate to the summit, who would not tell me her name, told me what she thought of Adapt. "Going to jail has never changed anything," she said. I wonder what she' d beent h i n k i ng du r i ng Martin Luther King III's speec h. His father went to jail a lot. Mike Goupil of Topeka,  also came to Washington. He is unemployed and hopes to fi nd work repairing wheelchairs. He too was arrested. "That was my tenth Adapt-related arrest," he told me. "Somebody has to stand up for the rights of people with disabilities." I asked him why he believes in direct action. "You have to show them you mean business," he said. Mike, too, was arrested in Senate Majority Leader Frist's Offi ce. Will the summit "outcomes" succeed? That depends entirely on the largesse of the federal government. Changes in federal law, generous budget allotments and, above all, more and lotsmore Medicaid millions are needed. The summit-goers' plan is simple. In order to keep getting money, you can't piss off your "federal partners." You balance the need for more money, more system reform, against your current income and decide it is best to be patient and "professional." No point in making enemies. Alienating the administration is the thing they can't do. Working with Congress is the thing they must do. Anything else will threaten their continued existence. After them, thedeluge, remember? They expect that the House will cut budgets, pass horrible laws andgenerally ravage the human services system. But, not to worry, since there are a few Senators who will actas a moderating influence and do damage control in conference committee. Most of these Senators are Democrats. They are also politicians and one of the oldest mantras of politics is "What have you done for me lately?" People wit h disabilities voted in larger numbers than ever in the last election. The Democrats supported the Help America Vote Act, they nominated a candidate who is a co-sponsor of MiCassa and yet people with disabilities voted strongly for Bush. Why should Senate Democrats continue to help us? The Bush Administration has been a disaster for all of America. The number of people living in poverty has increased dramatically. Bush has squandered the Clinton budget surplus and plunged the country into debt, debt to the tune of $150,000 per man, woman and child in America. The summit refrained from attacking Bush or the House Republicans. Why? Fear of retaliation adds up to silence. Most of the program budgets that support summit sponsors have been either f lat-funded since Bush came into power, or cut. The summit presented a real opportunity to dosome ser ious political work. But any cr iticism ofthe President would be inappropriate. A fine outcome would have been to have every delegate sig n a pledge to go h ome and do everything in their power to defeat R e p u bl ic a n members of the House of Representatives. No greater service could be done. But no one mentioned such a thing. After all, grants and allotments forbid partisan political work. The summit's sponsors are proud of having made advocacy a profession. They dress like professionals, strut like professionals, and condemn bad behavior such as the use of four-letter words. I-R-A-Q was one of the forbidden four-letter words. It costs taxpayers more than $1 billion a week to maintain Bush's war. The summit would like for Bush not to cut $10 billion from Medicaid, they want housing addressed and full Congressional funding for IDEA. Astonishingly, they want this all done without mentioning the Iraq war! "We can't afford to alienate the administration on a non-disability issue."  Better, apparently, to postpone freedom for another generation than to risk losing money.   Hurricane Katrina claimed the lives of a disproportionate number of people with disabilities. Obviously, more and better future planning is needed. But if we do not identify and remedy what is causing the waters of the Gulf of Mexico to warm, no amount of planning and preparation will protect people from future storms of increasing ferocity. Global warming? "It's not in our grant." Something is wrong when survival is considered an inappropriate goal. Nothing could be more important than health care reform. Senator Bill Frist (R-TN), a physician, is Majority Leader in the Senate, and was, for a short time, head of the now defunct Senate Disability Subcommittee. Nothing can happen in the Senate without his consent - and this is a man whose family fortune is entirely based on for-profit hospitals, notably Hospital Corporation of America - once successfully targeted by the Department of Justice for Medicaid fraud. As long as Frist has power, there will be no fundamental change. During the summit The Washington Post disclosed that a few days before an unfavorable quarterly earnings statement was due for release, Frist had sold his stock in the family hospital business. Martha Stewart went to jail for less. Although Frist denies any wrongdoing, an investigation is underway into that sale. Here is an opportunity to get rid of Frist and open the possibility of real health care reform. At the disability summit, this could not be seen as a disability issue. One must not make powerful people mad. Meanwhile, across town, another mother had arrived. Her name is Cindy Sheehan. She has no staff, no organization, no grants. What she does have is a simple message, much like the special education mothers had a generation ago. Her message is easy to understand and hard to turn your back on: "Why did my son die in Iraq? I wantthe President to tell me." I talked with her, and listened to her, on that Friday. I would like to know her better. She is someone with heart and without a hidden agenda. She is not afraid. On Saturday, she led more than 100,000 Americans to the White House to ask Bush for some simple answers. It is she and her friends, not the summit-goers, who are the spiritual heirs to Martin Luther King, Jr. It is risk-takers who inspire and lead. An Adapt activist sat near her. Paralyzed in Vietnam, his life is dedicated to peace. The obvious connection between a sane government and the prosperity of all people is what brought him to Washington. "Adapt kicks ass," he told me. The summit had the opportunity to call for the defeat of our enemies in Congress and an end to the war. It is hard to imagine that the idea ever crossed their minds. It would have been too controversial, too risky. And that is too bad. Across from Camp Casey, set up by Cindy Sheehan and her friends in honor of her dead child, is the new World War II memorial. On one of its granite pillars these words are inscribed: "They had no rightto win. Yet they did…. Even against the greatest ofodds. There is something in the human spirit - a magical blend of skill, faith and valor - that can lift men from certain defeat to incredible victory." It was Saturday when the summit participants went home. They had a good time, passed some resolutions and, mostly, didn't make anyone mad. On Monday Cindy Sheehan went to jail.  Like the Adapt activists at the start of that week, shetook her skill, faith, and valor and put it where it mattered most. She had nothing more to lose. Michael Bailey or Portland, Oregon is author of "SPECIAL EDUCATION: A Families Guide to a Child's Success," to be published in April, 2006. Michael Bailey Wed, 15 Mar 2006 00:00:00 EST http://www.lgtinc.org/articles/65/1/6th-Anniversary-of-Institution-Closure This week marks the 6th Anniversary of the closure of Fairview Training Center, Oregon's institution for people with developmental disabilities. Although community based services continue to be problematic the closure is, nevertheless, an accomplishment worth remembering. What follows is my eye witness account of its last day.       Farewell Fairview: you will not be missed  Michael T. Bailey     If only the 'inmates' of old could have benefited from today's more enlightened attitude.               In the end it was just green grass and vast, empty buildings. The mass of humanity going about its business; the smell, the bedlam, the shrieks, the love and the drama of human life are gone. In a moment all that became part of history; a part of our collective memory.           Last Thursday, a small group of staff, state officials and advocates met informally in front of LeBreton Hall on the grounds of the Fairview Training Center. Some stared into space, their minds occupied with memories, some joked, some dabbed at moist eyes, some took pictures. Over all of us lay the anticipation of a once-unimaginable and long awaited event. It happened, finally, at 1:15 p.m.           A green minivan pulled up in front of LeBreton and stopped. No one seemed to know what to do.  A few of us waived to the occupant in the front passenger seat. He smiled and waived back. For him a new life was beginning as another, older and more ordered life came to an end.           The van pulled out and disappeared. Leaving in it was the last, the very last, resident of Fairview Training Center.           In the superintendent's office we examined the entries in the large, musky, leather-bound ledgers, their endless sheets filled with careful renderings, the pages yellow and stiff from age and from the dried ink so painstakingly applied by generations of clerks. On the pages are columns marked "inmates".           Here are the daily counts. "February 24, 1917, 371 inmates." Soon their number would exceed 3,000. The names of the new "inmates" were carefully recorded and each assigned an "inmate number". Also entries such as this: "March 16, 1921, inmate #….. died. Remains shipped to family in Cave Junction." The ledgers are an archive not only of an institution but also of the meticulous detail attended to by the keepers of these "inmates."           There are scrapbooks of clippings from newspaper stories. Aging photos of goofy kids dressed up for a parade. Construction of the pond. Later, newsworthy pictures of young people bowling "in the community."           These are also stories of lost "inmates," of fires, murder and death. Images of faces smiling and laughing, a lasting testament to human spirit and resilience. I see that face every morning: My daughter has one just like it.           In 1981 the clippings began to tell another story; one of lawsuits, investigations, charges and counter-charges. That ended on Feb. 24, 2000 at 1:15 p.m. There will be no more clippings.           Slowly we walked around the silent and empty campus with two former "inmates" who remembered their lives at Fairview Training Center. The infirmary where one went for a knee operation only to learn that they had operated on her healthy hip by mistake. Another pointed out the spot where she was run over by a staff vehicle. To save money her knee was fused, rather than repaired. Thirty years later it still will not bend.           We walked into the empty "cottages," now smelling of cleaning products and echoing the sound of our footsteps. "Oh, no, it wasn't like this when I lived here," our commentator said. "Then there were no partitions of any kind. All of us girls slept on cots next to one another. There was never any privacy." She remembered how as a child she was frightened of "the big heads," the ones with hydrocephalus who leaned on the wall and groaned.           Finally, we passed the plaque on the wall of Fairview's first building. It commemorates the names of the superintendent, state officials and architect responsible for completing this project for the "Oregon Home for the Feeble Minded - 1919."           We walked back to LeBreton and got into the van. We drove off with one of the former "inmates." She had to return to her full-time job and at the end of the day would go home to her own apartment. There she would be alone with the memories of a life that once labeled her a "victim of…" and an "inmate" and now, finally, to that of a respected, financially independent and successful professional woman.           Farewell Fairview Training Center. You were born of a bad idea in 1908. You left us on a brisk and shining afternoon in the midst of an Oregon winter. Rest in Peace.           May your kind never pass our way again.               This article appeared in the Commentary Section of The Oregonian newspaper on February 29, 2000.     Michael Bailey Thu, 02 Mar 2006 00:00:00 EST http://www.lgtinc.org/articles/12/1/Issues-of-Dire-Importance-to-People-With-Disabilities We are quickly approaching the first anniversary of the judicial murder of Terri Schindler Schiavo. Advocates familiar with the case watched the unfolding scenario horrified that a human being could be devalued to the point that society would watch her being punished to death, tried like a vicious criminal on national and worldwide TV. Who could believe that she would be forced to endure brutal treatment that our constitution protects even the most hardened evil criminals from experiencing. Neither rapist, nor murderer, she was no criminal at all and yet she was victimized by the Courts that should have protected her from the cruel intentions of her monster husband Michael Schiavo, who out of love he says, starved/dehydrated his wife on 3 separate occasions; forcing her to endure the most horrific treatment administered to any human being anywhere. Could this really happen here? Not only can this happen here in America, it does and is happening all the time all over our nation. Whereas the people here think that Terri was and is the only person to have been treated this way in our country, disability advocates know the real truth. Forced starvation, dehydration happens all the time everywhere in all of our hospitals. A report by the Robert Powell center for Medical Ethics of the National Right to Life Committee, April 15, 2005, released just two weeks after the murder of Terri proves that starvation/dehydration is a regular form of "treatment" for those whose lives are considered not worth living. When asked, WILL YOUR ADVANCE DIRECTIVE BE FOLLOWED? The Report concludes that, "The public overwhelmingly believes patient and family choices for life-preserving measures should be respected, even when health care providers disapprove. However, health care providers are increasingly denying life-preserving measures in contravention of patient and family directives choosing them. Their denial of care as 'futile' is often based on 'quality of life' rather than physiological grounds and that most state laws fail to protect patients and families who want food, fluids, or life support when health care providers deny it." Do you see why it is of vital importance that people with disabilities absolutely take a very vocal stand now on this issue while we still can. We are at war with a very powerful enemy and most of you don't even know that your life orsomeone's you know is at risk. I will tell you about some very important issues which you will need to educate yourself about in order to best protect yourself and your families. 1) Please learn about the dangers of using vaccines as a preventative measure against the Flu or childhood inoculations. These are nothing more than poison cocktails. It is much better to have your immune system tested by illness and disease so that of its own accord it can strengthen your immunity. The mercury preservative Thimerosol found in most vaccines is now linked to the drastic rise of Autistic Spectrum Disorders in Children as well as Dementia and Alzheimers in Adults. People who routinely receive inoculations are the greatest at risk for all kinds of cancers and illnesses. Bioethicists are currently trying to establish new precedent for the approved starvation/dehydration of people in this category of need even though they are not dependent on feeding tubes for food and hydration. For parents with kids who have autistic spectrum disorders such as ADD/ADHD, etc; there is a treatment called chelation therapy that can help your children. Generation Rescue a group founded by parents of autistic children have successfully implemented the chelation therapy to cause a beneficial affect on their children. The chelation therapy treats your child for heavy metal mercurial poisoning and can be remedied by using a uninvasive skin lotion which draws the poisons out through the skin. Children having received the therapy are seeing singificant improvement. A federal judge has just ruled that Asperger's syndrome is a disability when in truth it is nothing more than mercury poisoning. Please read the following article I wrote for more information. 2) According to a recently released poll by the Pew Research Center for the People & the Press.- Three in 10 people, 29 percent, now say they have a living will. That's more than twice the number, 12 percent, who said in 1990 that they had put into writing how they wish to be treated medically if they are incapable of communicating. While there is a rise in the number of people who have living wills, living wills do nothing to protect the wishes of people and in fact was and is a document promoted by euthanasia and right to die groups. A Living Will is generally described as a signed, witnessed declaration instructing a physician to withhold or withdraw medical treatment from its signer if he or she is in a terminal condition and is unable to make decisions about medical treatment. A Living Will takes rights and control from its signer and gives decision-making authority to a physician. It also gives a physician complete immunity from civil or criminal liability for his or her action or inactions. A better option for really preserving your right and authority to choose is a "Durable Power of Attorney for Health Care" or a document called 'The Will to Live.' Either of these documents will protect you where the 'living will' leaves you at risk. In the Durable Power of Attorney, one can delegate to a trusted friend or family member the power to become your agent for any health care decisions you are unable to make. Also as built in protection the PMDD limits your agent's authority in one very specific way - It makes it clear that your agent does not have the authority to approve the direct and intentional ending of your life. Your agent may not authorize in any way shape or form that you be given a lethal injection or an intentional lethal drug overdose. Your agent cannot authorize you be denied food or fluids for the purpose of causing your death by starvation or dehydration. This limitation not only protects you but also protects your agent from being subjected to pressure to authorize such actions or omissions. The Will To Live safeguards your life when you cannot speak for yourself as your "health care agent", names backup agents if your first choice can't serve, describes the treatment you do and do not want to guide your health care agent and physicians, protects your family and health care agent from pressure from health care providers and others by allowing them to prove what you really did want, and best of all relieves agonizing end of life decisions by making your wishes clear. For more info: go here. 3) If you are an organ donor like I once had been, you may want to read the article I wrote "On the Dangers of Being an Organ Donor." Bioethicists and for profit health care have put all people at risk, but none more than people with disabilities. Organ donors in general do not receive quality end-of-life care because hospitals stand to make more off harvesting someone's donated organs than they would from saving organ donor's lives. It is of utmost importance for the American people to learn about what is happening in mainstream hospitals that not only embrace personhood theory but also covet the organs of their patients. Ron Panzer, advocate with the Hospice Patients Alliance wrote, "We sometimes (and increasingly) have newly injured patients being declared "brain dead" at the hospital without the appropriate tests ever being completed. We have hospital transplant teams being flown in ready to "harvest" organs from patients who have never been properly diagnosed, whose families are not always informed of all the treatment options, and we have doctors ready to "spin" the patient's condition into a "hopeless" category so the family agrees to "allow the patient's death to have some meaning" through organ donation, even though in cases where the family refuses to accept the "final determination of the all-knowing docs," the patient recovers! The glaring reality is that when the docs are wrong, dead wrong, the patient is killed by the harvesting of the organs, not because of the injuries sustained." People with disabilities are increasingly targeted as the perfect pool of people to exploit for organ donation. As of February 2002, UNOS (United Network for Organ Sharing) had a waiting list for 79,523 major organs, while in the previous year the total number of transplanted organs was 22,953. The disparity between number of transplantable organs and the need for such organs has led transplant programs to seek to expand the sources of transplantable organs. Bioethicists working for profit policy boards are giving advice which is quickly moving American society further and further away from an ethic of universal human equality and the Hippocratic oath of Do No Harm. Motive for profit has lead to theories' which create divisions of us and them in an explicit hierarchy of bioethically determined human value. Wesley J. Smith who has been exposing this movement writes, "History teaches us that judging human worth based on subjective criteria -- race, sex, sexual orientation, tribe, religion, nationality or personhood -- invariably results in the oppression, exploitation or even killing of those deemed by the powerful to be less worthy of respect. And considering that many of the people denigrated by bioethics as nonpersons, not coincidentally, also happen to be the most expensive to care for in the age of the HMO when cost-cutting is king, bioethics presents an acute danger to the lives, health and well-being of millions of people who are elderly, disabled, newborn and cognitively or developmentally impaired. Since in the end this could include any one of us, we ignore the threat of bioethics at our own peril." I leave you with this final quote on organ donation in hopes you investigate the issue more carefully, "There is no more egregious violation of patient rights than to be made dead, without any chance at all to receive care designed to bring about recovery, when recovery is realistically possible. How many inaccurate predictions are made by the doctors who are less eager to provide care and more eager to get healthy organs from the soon-to-be dead, victim of vulture-like organ transplant teams who swoop in and grab whatever they can, selling all the organs and usable body parts for many hundreds of thousands of dollars, even millions."- Ron Panzer. To learn more about this issue go here: 4) The issue of the Downing Street Memo and the war against terrorism. Estimates recently released show that the cost of the wars in Iraq and Afghanistan, have topped the 2 Trillion dollar mark. America is spending a million dollars a minute, a billion dollars a week to stay in wars we were lied into supporting. President Bush has borrowed more money than all other president's combined. With the state of the budget the way it is, the trade deficit at record highs, and our national debt at all time high, America will continue disintegrating domestically. Bush Jr. has borrowed more money than all other President's combined, not to mention that his neo-con hawks are already planning subsequent wars with Syria and Iran. There is a direct correlation between the lack of government support in our country for those that need it the most and the flood of money leaving our country supporting what now is undeniably illegal wars of conquest benefiting corporations awarded multi-billion dollar no-bid contracts at the expense of both the Iraqi and American people. The Downing Street Minutes show clearly that Bush and Blair had decided for war before Colin Powell went to the UN and before Congress authorized a Declaration of War. It also proves that the American and British Intelligence would have to "fix the facts around the policy." For information on what you can do to help take back our country. 5) One other issue surrounding war which has a direct impact on people with disabilities has to do with our nation's use of Depleted Uranium munitions. The use of these highly dangerous munitions places not only Iraqi's in danger but our soldiers as well. If you know anyone in the military make sure they learn about depleted uranium as those soldiers whom have been exposed to DU are returning from war and having children with massive complications as a result of their exposure. Unless we place pressure on the pentagon to quit using DU munitions, the whole world will be at risk as DU can travel piggyback easily into every part of the world on the tradewinds which go all places. This stuff is so harmful that just 1 particle can lead to cancer in lung, bone, kidney, prostate, gut and brain. There has been a shape rise in birth defects in Iraq even from the use of DU in the first Gulf War. The massive use of DU and white phosphorous munitions in this Gulf War has exploded the rate of cancer and birth defects in Iraq. Wasn't one of the reasons for the US to go into Iraq because Saddam had used chemical weapons against the Kurds which we supplied to him in the first place. Now our country is over there bombarding Iraq with weapons of mass destruction way worse than anything he ever used. Following inhalation of DU it is transferred from the lung to other organs eventually making its way to the kidney where it induces nephritis, a chronic kidney disease. DU has a half-life of 4.5 billion years which means contamination will last until it is placed in a secure environment where it cannot harm living tissue or contaminate soil or groundwater. Many returning soldiers contaminated with DU are giving birth to children with with extreme complications and disabilities. "Sixty-seven percent of babies born to the 400,000 vets who suffer from Gulf War Syndrome have birth defects," said Joyce Riley, a former nurse who flew in Iraq and the founder and spokesperson of the American Gulf War Veterans Association. But the Department of Defense and Veterans Affairs do not want America to know the number of sick, dead and deformed kids that vets are having. It's another cover-up... "A lot of the babies are being born with organs out of place-kidneys in the wrong place, hearts out of the body," Riley told AFP. "The most [common birth defect] is failure to thrive, where they could not keep weight on and just didn't make it." 6 Record Defense Budget, Tax Cuts for the Wealthy Could = Death for Many Americans Dependent on Medicaid Medicare People with disabilities are increasingly being put at risk by the Bush administrations focus on funding the 'war on terror' and the development of a 'police state' in America. "While the Pentagon budget is soaring, the Center on Budget and Policy Priorities, warns that President Bush is proposing to make cuts in hundreds of domestic programs. This includes education programs, environmental protection programs, numerous programs to assist low-income families, children, and elderly and disabled people, and research related to cancer, heart disease, and other medical conditions. In one case, the Center estimates 420,000 low-income seniors will lose food assistance from the Commodity Supplemental Food Program." 7.  Testimony to the Georgia Senate about the Issue of Forced Starvation/Dehydration Thank you. Thank you for taking the necessary steps to develop a law which will protect people in our great state from the nightmare scenario of forced starvation dehydration. I understand that you are asking for testimony so that you can better understand this issue. I would like to submit this written testimony into the record and break it down into various parts to illustrate the full story and why and how forced starvation dehydration happens and who and what this bill needs to protect people from. 8. Written Tesstimony to Senate on the New Freedom Initiative I want to thank you for tackling this issue and especially for asking me to be part of this very important Study Commission. Unfortunately I have bronchitis and will not be able to attend the commission tomorrow. However, I will spend the next few hours working on a written testimony which if possible I would like you to include this in the Congressional Record. Georgia appreciates your concern for those that are the least protected and most vulnerable among the population, namely our children. I would have loved to attend this Study Commission as I believe I have one of the most unique perspectives on this issue as I have been researching and reporting on it for years. Most only have a small part of the larger picture and therefore do not understand the full implications of President Bush's New Freedom Initiative, which could unnecessarily threaten the lives of millions of innocent Americans and put at risk families who will not be willing to allow the 'forced drugging' of their children. These are just some of the most important issues affecting all Americans but especially people with disabilities. For more information on any of these stories please go to the articles section at endeavorfreedom.org. To contact me concerning any issue email zengarcia@alltel.net Zen Garcia Wed, 25 Jan 2006 00:00:00 EST