Loading ...
Sorry, an error occurred while loading the content.

Re: Greetings With A Smile

Expand Messages
  • David
    Hi, I grew up with AMC at the Childrens hospital in Seattle, the last time I was there I was 19. that was 28 years ago, but I still know some of the Dr s there
    Message 1 of 18 , May 2, 2004
    • 0 Attachment
      Hi, I grew up with AMC at the Childrens hospital in Seattle, the
      last time I was there I was 19. that was 28 years ago, but I still
      know some of the Dr's there and keep in touch with a few of them, I
      have also met with other Doctors from other parts of the country
      about AMC, from what my experience is, with Children, Seattle is one
      of the best...but I could be biased.

      David

      --- In amc_adults@yahoogroups.com, Georgia <arthrogryposis2003@y...>
      wrote:
      >
      > Hello Everyone
      >
      >
      >
      > I hope someone can help me with some important information. A
      friend of mine is expecting twins. One of the babies might have
      Arthrogryposis Multiplex Congenita and would like to know which
      hospital (dupont or seattle) is better. If you have been to both,
      do you have a preference? I would love to hear your experiences.
      >
      >
      >
      >
      >
      > ---------------------------------
      > Do you Yahoo!?
      > Win a $20,000 Career Makeover at Yahoo! HotJobs
      >
      > [Non-text portions of this message have been removed]
    • Georgia
      Hi Dave I am at the college right now finishing up some end of the semester reports. Saw your email pop up and thought I would say thank you for answering me.
      Message 2 of 18 , May 2, 2004
      • 0 Attachment
        Hi Dave

        I am at the college right now finishing up some end of the semester reports. Saw your email pop up and thought I would say thank you for answering me. Ya I live in Arizona and my friend is a student. I am discovering that there are a lot of people with AMC and it isn't such a small world like I thought. So I will take your advise and show her the emails that I have received. Again thanks for answering me.

        David <d_kennedy@...> wrote:
        Hi, I grew up with AMC at the Childrens hospital in Seattle, the
        last time I was there I was 19. that was 28 years ago, but I still
        know some of the Dr's there and keep in touch with a few of them, I
        have also met with other Doctors from other parts of the country
        about AMC, from what my experience is, with Children, Seattle is one
        of the best...but I could be biased.

        David

        --- In amc_adults@yahoogroups.com, Georgia
        wrote:
        >
        > Hello Everyone
        >
        >
        >
        > I hope someone can help me with some important information. A
        friend of mine is expecting twins. One of the babies might have
        Arthrogryposis Multiplex Congenita and would like to know which
        hospital (dupont or seattle) is better. If you have been to both,
        do you have a preference? I would love to hear your experiences.
        >
        >
        >
        >
        >
        > ---------------------------------
        > Do you Yahoo!?
        > Win a $20,000 Career Makeover at Yahoo! HotJobs
        >
        > [Non-text portions of this message have been removed]




        Yahoo! Groups Links






        ---------------------------------
        Do you Yahoo!?
        Win a $20,000 Career Makeover at Yahoo! HotJobs

        [Non-text portions of this message have been removed]
      • Georgia
        To:Advocates_For_People_With_Diffabilities@yahoogroups.comFrom: Londa Date:Thu, 6 May 2004 09:09:08 -0400 Subject:AFPWD Fw:
        Message 3 of 18 , May 7, 2004
        • 0 Attachment
          To:Advocates_For_People_With_Diffabilities@yahoogroups.comFrom:"Londa" <londa.mccullough@...>Date:Thu, 6 May 2004 09:09:08 -0400
          Subject:AFPWD Fw: [OCLB] Parent Power!

          Hello Everyone

          I been asked to post this email to all the groups I belong to. Sorry for the length of this email. As an advocate I feel this email is very important to all the parents who have children in school.


          For more information, discussion forums, and our archives, please visit http://pub60.ezboard.com/bourchildrenleftbehind
          -----


          ---------------------------------


          OUR CHILDREN LEFT BEHIND
          Newsletter | Home page | Archives | Message Board
          ---------------------------------


          MAY 6, 2004

          PARENT POWER!
          May 3rd I.D.E.A. Call-in Day marks another grassroots success for families

          Congratulations to everyone on such a great job during Monday���s Call-in Day! We are still receiving feedback from many who participated, but here are a few of the common themes based on what our readers are telling us:

          The bill was pushed off from this week to the week of May 10, 2004. (We know, we know! LOL This date change is obvious to most of you, but since we heard this so often, we felt the need to share it anyway.)

          The switchboard reported that the call volume was much higher than usual.

          The phone lines were very busy in most places. Voicemail boxes were full. Some callers reported that Senate staffers were answering S.1248 calls while talking with another person discussing S.1248 at the same time.

          Many offices were using tallies only, and it varied from office to office whether they even asked where the callers lived. Some of the office staff didn���t ask for the callers��� names at all. In most cases, the folks working on the tallies knew that it was S.1248 Call-in Day.

          Parents are much more persistent these days in making absolutely certain that no one in the Senate can say that they aren���t hearing from parents. Varieties of message delivery were used on Call-in Day, including phone, fax, and e-mail. If one didn���t work, another was tried. Also, if one of our parents or advocates could not get through on Call-in Day, they would do it at night or on another day. We didn���t hear from anyone who just said that they were giving up.
          Although we don���t know for sure how many calls there were for this issue alone, from the e-mail that we have been reading, it is safe for us to speculate that the Senator���s offices received hundreds and hundreds of calls from parents regarding S.1248.

          The most impressive thing that we have been hearing is that Senate staffers are beginning to better understand the potential negative impact that the IDEA amendments and reauthorization will have on students with disabilities. Examples of how certain provisions could play out, given what families are presently experiencing, seem well received by most offices where the staff has allowed parents to speak to them at some length.

          Unfortunately, we are also hearing that there are some offices where parents are really not being listened to, if heard at all. It appears that some minds have already been made up, based on the past erroneous information given to them that parents have been fighting all along. What is amazing about this is that we heard from one visitor that her senator has not read the bill yet and also have been told that this is pretty typical (that until a date is confirmed, the bill is not read by the senator and staffers don���t communicate at the level of vigor and regularity that parents would hope).

          We are hearing and reading information all over the map about amendments, ranging from they are done (but they are not usually released for the public for reviewing), to they aren���t done yet. Many of us talking about IDEA wonder how the amendments could not be done, given that this week was so strongly pegged to be the week that the bill would come to the Senate���s floor.

          Our visitors also sent us some additional comments that seem to make sense. The first was that Senator Frist plans on bringing S.1248 to the floor this year and wants it to pass. However, it will not come to the floor until it is certain to comfortably pass. Second, we heard that parents may receive little, if any, notice when S.1248 comes to the floor. So, we must keep our ears to the ground and IDEA detective skills sharp. And lastly, we were told that the bill cannot be officially ���removed from the calendar��� due to November���s S.1248 agreement between the Senators.

          Another victory that we all need to note is that so many parents, through grassroots efforts alone, are working together and delivering common messages. Individuals who may have never met each other before are now communicating regularly, planning next steps together, and celebrating this great surge of Parent Power! We are too. It takes every person and organization that we can get to sustain this positive momentum. And it is critical that we do.

          What next? Well, we need to continue doing what we are doing. Schedule more Call-in Days. Make and break the news. Write press releases. And continue to do all of the things in the red link at the top of the www.ourchildrenleftbehind.com Home page. Additionally, the governors from each of our states are now looking down our throats and were just in Washington last week. Governors have an incredible amount of power and influence in D.C. Needless to say, they want state power, local control, paperwork reduction, less accountability, and other things that run counter to what parents are asking for. So, it may be wise to save those letters to your Senators and rewrite them as letters to your own state governor. You can find the contact information for your governor at www.congress.org.

          In summary, parents across this country pulled off another successful call-in day using primarily our electronic devices as a way to connect with each other. We are all really helping define what ���online activism��� looks like. We now have much more information than we���ve had before. More and more senate offices are listening and beginning to understand our messages. The amendment situation is unclear. State governors are turning up the heat. The school folks are not backing off either. The sheer volume of calls, letters, visits, faxes and other contacts matters. Understanding the issues and being able to distill them down, in ways that people who do not have close relationships with students who have disabilities can understand, is important. We are far from being done. Building in sustainability mechanisms to maintain our momentum and efforts is a must. And, lastly, keeping our own online networks intact may be the only way that some parents across the country will hear what is
          actually going on.

          The Our Children Left Behind team congratulates all of you and everyone who helped make this week���s Call-in Day a success.

          Debi Lewis shared an interesting quote describing the meaning of advocacy with our team members. It was written by Wolf Wolfensburger (we are looking for the original source, so if anyone has a clue, please send it along, we are interested in knowing). I would like to share it with you, in celebration of this week. You sacrifice so much for this IDEA battle each day that this quote just seemed to fit the occasion, so here it goes:
          Quote:

          ---------------------------------

          However, merely speaking on behalf of a person or group does not seem to be enough. The concept of advocacy implies in addition, a vigor, a vehemence, a commitment ��� I would even say a high cost, often in the form of risk.

          To me, advocacy-like action becomes advocacy when the actor does more than what is done routinely and what would be found to be routinely acceptable. The advocate gives beyond the ordinary call of his/her time, possessions, emotional wear and tear, continuity of involvement.

          In this sense, the advocate acts at least as vigorously for another person or group as for himself/herself. Above all the advocate is prepared to risk hostility from others, taunts, being considered foolish or crazy, loss of income, loss of job, loss of health, physical hurt, violence - - perhaps even death.

          To me valuable action, without high cost, or perhaps even risk, is not advocacy.

          Whenever advocacy really begins to work, it will be persecuted, because it will be a threat. Conversely, the phonier an advocacy and protection system is, the more likely it is to be praised, legitimized, exalted and funded.

          Wolf Wolfensburger

          ---------------------------------

          We are so happy that parents are still calling, writing, and visiting their Senators. It is much needed. Please, keep your letters coming and let us know what you hear. Isn���t it nice helping each other out?

          Shari Krishnan, today's parentvolunteer@...

          ��2004 Our Children Left Behind.

          Our Children Left Behind [OCLB] was created and is owned/operated by parent volunteers (Sandy Alperstein, Tricia & Calvin Luker, Shari Krishnan, and Debi Lewis). Permission to forward, copy, and/or post this article is granted provided that it is unedited and attributed to the author(s) and www.ourchildrenleftbehind.com. For more about OCLB or to share information, please contact parentvolunteer@....


          ---------------------------------


          BREAKING NEWS

          May 6, 2004 (Senate's Pre-Memorial Day Agenda)

          Senate Majority Leader Bill Frist, R-Tenn., today laid out a pared-down agenda between now and the Memorial Day recess. Notably absent was a final version of the fiscal 2005 budget resolution (S Con Res 95), which has stalled in a House-Senate dispute over offset requirements for tax cuts. Frist said he was hopeful the Senate could pass the corporate tax bill (S1637) this week. Next week, he will call up legislation (S 1248) to reauthorize the Individuals with Disabilities Education Act. He also plans to take up the annual defense authorization bill before the May 24 recess. Frist mentioned two other near-term priorities: a measure (S 15) that would authorize the administration's Project Bioshield to combat bioterrorism and appointment of conferees to the highway program reauthorization. First up after the recess will be a bill to overhaul the rules governing class action lawsuits. And to get that on the floor, Frist agreed to schedule a vote on a minimum wage increase.


          ---------------------------------


          THE GRAPEVINE

          May 5, 2004 (SpEdVoters Call-In Day ReCap & Thanks)

          Thanks to everyone who called, wrote, e-mailed etc. You all jammed the switchboards again. Responses varied, but almost all offices admitted that families were calling and were not happy with S.1248.

          That is the good news.

          The bad news is that the Senators who have made up their minds don't really care if we are happy or not. Most of them who admitted to a position said that they will vote 'yes' because the bill is 'bipartisan'. I find it mind boggling that the two parties who can't agree on what to call fried potatoes can find universal agreement that our children do not deserve the rights that they grant to criminals (the right to presumed innocence for example).

          It also turns out that the Senators have been meeting with the other side to develop strategies to undermine our children's interests. Where are the meetings with parents and self-advocates? In the minds of the Senate schools are for the teachers, and the students are merely the fodder that passes along the production lines. Rather then giving the teachers the tools that they need to effectively teach all children, they are just giving up on the 6.5 Million children who have been classified with a disability.

          So S.1248 is better then HR.1350. Whether you get run over by a bus doing 45 or 65 you are still dead. It is a semantic distinction. Also considering the White House's wholehearted support of HR1350, why would the Senate GOP oppose the administration and their House colleagues in Conference? So we will end up with more HR.1350 then S.1248.

          Between 70% and 75% of people with disabilities are unemployed. Considering that it is the job of the educational system to create employable adults, and that IDEA has been on the books for 25 years, it is obvious that the system is a failure. With this track record, how can anyone who truly believes that our children can learn, want to reduce oversight instead of increase it. By removing STOs, restricting due process rights, and doing away with the presumption of innocence, S.1248 shows that the Senate, despite its words to the contrary, do not believe that our children can learn. Nor do they think that they are worth the effort. They used to believe the same things about women and people of color.

          What we are fighting is so much more than S.1248. We are fighting the dehumanization of our precious children. Don't give up.
          "Get Up, Stand Up, Stand up for your rights.
          Get Up, Stand Up, Don't give up the fight."
          -Bob Marley
          Larry



          ---------------------------------



          Home pages | Breaking News | Press Info | The Grapevine | Resources



          ---------------------------------





          Printed for educational purposes only: The news that is reported is not
          necessarily the viewpoint of AFPWD or it's management. Nothing within this message should be construed as endorsing, promoting or abetting any illegal or unethical activity. The articles in this newsletter are not necessarily the opinion of the editor.

          Material appearing here is distributed without profit or monitory gain to those who have expressed an interest in receiving the material for research and educational purposes. This is in accordance with Title 17 U. S. C. section 107.

          http://www4.law.cornell.edu/uscode/17/107.html

          Under Bill s.1618 TITLE III passed by the 105th U.S. Congress this letter cannot be considered spam as long as we include: Contact information & a Remove Link
          Reprinted under the Fair Use Law: Doctrine of international
          copyright law.
          http://www4.law.cornell.edu/uscode/17/107.html



          ---------------------------------
          Do you Yahoo!?
          Win a $20,000 Career Makeover at Yahoo! HotJobs

          [Non-text portions of this message have been removed]
        • Georgia
          Hi Everyone Some how I over looked in including the link. Sorry everyone. I am having a bad day. Here it is... http://www.msnbc.msn.com/id/5318863/ ... Do
          Message 4 of 18 , Jun 30, 2004
          • 0 Attachment
            Hi Everyone

            Some how I over looked in including the link. Sorry everyone. I am having a bad day.

            Here it is...


            http://www.msnbc.msn.com/id/5318863/


            ---------------------------------
            Do you Yahoo!?
            New and Improved Yahoo! Mail - 100MB free storage!

            [Non-text portions of this message have been removed]
          • Georgia
            Hello Everyone I Am Excited About Taking A Trip To Washington State. I Will Be There 12th Through 20th. My Uncle Sent Me A Phone Card. I Would Love To Talk
            Message 5 of 18 , Jul 9 1:01 PM
            • 0 Attachment
              Hello Everyone I Am Excited About Taking A Trip To
              Washington State. I Will Be There 12th Through 20th.
              My Uncle Sent Me A Phone Card. I Would Love To Talk
              With Anyone About AMC. Send Me An Email With Your
              Phone Number ASAP. Thank You All For Your Support.




              __________________________________
              Do you Yahoo!?
              New and Improved Yahoo! Mail - 100MB free storage!
              http://promotions.yahoo.com/new_mail
            • Lisa
              Hi Georgia, I m excited for you about your up-coming trip. I would really like it if you were to give me a call, my number is 256-447-9119. However, I will be
              Message 6 of 18 , Jul 9 9:13 PM
              • 0 Attachment
                Hi Georgia,
                I'm excited for you about your up-coming trip. I would really like it if you were to give me a call, my number is 256-447-9119. However, I will be away from home a few days beginning next Friday because I am going into the hospital for surgery. But I would really like to talk to you, so maybe we can talk before then. Either way, I hope you have a wonderful time in Washington State.

                Sincerely,
                Lisa J.

                Georgia <arthrogryposis2003@...> wrote:
                Hello Everyone I Am Excited About Taking A Trip To
                Washington State. I Will Be There 12th Through 20th.
                My Uncle Sent Me A Phone Card. I Would Love To Talk
                With Anyone About AMC. Send Me An Email With Your
                Phone Number ASAP. Thank You All For Your Support.




                __________________________________
                Do you Yahoo!?
                New and Improved Yahoo! Mail - 100MB free storage!
                http://promotions.yahoo.com/new_mail

                Yahoo! Groups SponsorADVERTISEMENT


                ---------------------------------
                Yahoo! Groups Links

                To visit your group on the web, go to:
                http://groups.yahoo.com/group/amc_adults/

                To unsubscribe from this group, send an email to:
                amc_adults-unsubscribe@yahoogroups.com

                Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



                ~ It is because we are determined, not flawless, that we can attain perfection.




                ---------------------------------
                Do you Yahoo!?
                New and Improved Yahoo! Mail - Send 10MB messages!

                [Non-text portions of this message have been removed]
              • Georgia
                Hi Lisa I tried calling you but I got the answering machine. Hope your recovery is speedy. You can always email me. I also like using yahoo messenger.
                Message 7 of 18 , Jul 16 10:20 AM
                • 0 Attachment
                  Hi Lisa

                  I tried calling you but I got the answering machine. Hope your recovery is speedy. You can always email me. I also like using yahoo messenger. Well, take care.

                  Lisa <paintinglisa@...> wrote:
                  Hi Georgia,
                  I'm excited for you about your up-coming trip. I would really like it if you were to give me a call, my number is 256-447-9119. However, I will be away from home a few days beginning next Friday because I am going into the hospital for surgery. But I would really like to talk to you, so maybe we can talk before then. Either way, I hope you have a wonderful time in Washington State.

                  Sincerely,
                  Lisa J.

                  Georgia wrote:
                  Hello Everyone I Am Excited About Taking A Trip To
                  Washington State. I Will Be There 12th Through 20th.
                  My Uncle Sent Me A Phone Card. I Would Love To Talk
                  With Anyone About AMC. Send Me An Email With Your
                  Phone Number ASAP. Thank You All For Your Support.




                  __________________________________
                  Do you Yahoo!?
                  New and Improved Yahoo! Mail - 100MB free storage!
                  http://promotions.yahoo.com/new_mail

                  Yahoo! Groups SponsorADVERTISEMENT


                  ---------------------------------
                  Yahoo! Groups Links

                  To visit your group on the web, go to:
                  http://groups.yahoo.com/group/amc_adults/

                  To unsubscribe from this group, send an email to:
                  amc_adults-unsubscribe@yahoogroups.com

                  Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



                  ~ It is because we are determined, not flawless, that we can attain perfection.




                  ---------------------------------
                  Do you Yahoo!?
                  New and Improved Yahoo! Mail - Send 10MB messages!

                  [Non-text portions of this message have been removed]





                  Yahoo! Groups Links







                  ---------------------------------
                  Do you Yahoo!?
                  Yahoo! Mail is new and improved - Check it out!

                  [Non-text portions of this message have been removed]
                • Georgia
                  Hi Everyone I received this email from a friend and I thought several members who reside in a nursing home might find this helpful to them. It is very long.
                  Message 8 of 18 , Aug 4, 2004
                  • 0 Attachment
                    Hi Everyone

                    I received this email from a friend and I thought several members who reside in a nursing home might find this helpful to them. It is very long. Sorry.


                    From: allwerasking <allwerasking@y...>
                    Date: Sat Jul 31, 2004 5:36 pm
                    Subject: Fwd: Washinton Post: Options to Nursing Homes



                    Advocates_For_People_With_Diffabilities@yahoogroups.com



                    --- ADA Watch <info@A...> wrote:

                    From: "ADA Watch" <info@A...>
                    Subject: Washinton Post: Options to Nursing Homes
                    To: allwerasking@y...
                    Date: Sat, 31 Jul 2004 13:34:03 -0400 (EDT)

                    www.adawatch.org
                    ADA Watch news from the National Coalition for Disability Rights

                    ------------------------------------------------------------

                    washingtonpost.com


                    In Maryland, Disabled but Not Confined

                    Options to Nursing Homes Expand

                    By Mary Otto
                    Washington Post Staff Writer
                    Saturday, July 31, 2004; Page A01

                    It is another sleepy Saturday evening at this Wheaton nursing home.

                    Then the fiery woman in the red dress rolls off the MetroAccess bus in her electric wheelchair.

                    She has a spiral notebook in her lap and passion in her voice. She's quadriplegic.

                    She's Ellen Archie, 37. She used to live here. Now she's back, helping other people get out.

                    "They can't stop you from having a life outside of here," Archie tells her old neighbors, who encircle her with their wheelchairs in the courtyard.

                    Archie is one of a devoted network of outreach workers � some paid, some volunteer -- who go into nursing homes, whether they are welcome or not, and tell residents about their rights under federal law to live with as much freedom as they desire and can safely handle.

                    It has been three years since Maryland began providing waivers that allow nursing home residents ages 18 to 59 to opt for care in their own homes, provided they can acquire the home health services they need at the same price or less than it costs them to live in an institution.

                    For years, many disabled people have been propelled into nursing homes simply because Medicaid has paid for a bed there but not for the comparatively modest costs of home health care. But federal laws and court rulings -- and the staggering costs for states -- have laid the groundwork for providing more options for the disabled who want to live in the community.

                    "We don't have dementia, we don't have Alzheimer's. We have our minds," Archie tells her listeners. "It's mind over matter."

                    "Mind over matter, that works sometimes," muses her old friend Sherry Haynes, 54, who misses Archie. She used to straighten Archie's dresser drawers and keep her company before Archie got a Medicaid waiver and a rental assistance voucher and moved into her own apartment in Silver Spring.

                    Haynes, who has diabetes and lupus and has difficulty walking, wants to move out, too. It has been a year since Archie left, and Haynes is still waiting for housing.

                    "Ellen, I need another form, the green form for the waiver," Haynes says. "I need to fill it out if you don't mind, sweetie."

                    "I'll get it out to you Monday," Archie promises.

                    Her campaign, and that of other outreach workers, is not aimed at nursing homes that abuse residents or at patients who cannot function without the intensive services there.

                    "Our goal is to get people who do not belong in nursing homes out," says Archie, who keeps files on the people she visits regularly stacked on a tray table at the foot of her electric bed in her small apartment.

                    Sitting in the courtyard with her old neighbors, she acknowledges the struggles of daily life in a paralyzed body, with its spasms, sweats and tics. But mostly she speaks of the small joys of living again in the world: a trip to the coffee shop, a visit to the park or, in the evening, a sip of merlot.

                    She knows the thought of freedom can be scary to some.

                    "A lot of people just give up," she says. She understands. They are not old, yet they have suffered terrible trauma. Their monthly Supplemental Security Income checks are turned over to the nursing home. And they have come to depend on the institutions for all their needs.

                    "Your life will change, " she tells them again and again. "But you have to want it to change."

                    Finding Alternatives

                    Some have taken the leap of faith.

                    "We've gotten 145 out," Archie reported proudly this month. The cases of those 145 people took more than two years of hard work by the state's six nonprofit centers for independent living. A nationwide network of such centers has been charged with protecting the rights granted by the 1990 Americans With Disabilities Act and the U.S. Supreme Court's 1999 Olmstead v. L.C. decision, which directs states to offer programs for the disabled "in the most integrated setting appropriate."

                    There is much work to be done.

                    In Maryland, roughly 1,725 people ages 18 to 59 live on Medicaid in nursing homes, the state says. In the District, 1,106 people younger than 60 live in nursing homes on Medicaid, advocates say. Virginia estimates that 3,760 Medicaid recipients younger than 64 live in nursing homes.

                    "Most of the people could live in the community with supports through a Medicaid waiver," said Cathy Raggio of Independence Now, which serves Montgomery and Prince George's counties.

                    Nelson J. Sabatini, Maryland's health secretary, agreed that many people would do better outside of nursing homes. "What we are doing today in some cases is fairly barbarian," he said. "We're keeping people in an institutional setting who don't belong there."

                    He is concerned not only about the way institutionalization can limit potential, but also about the cost. A year in a nursing home can cost more than $60,000; the same services delivered at home cost closer to $40,000.

                    "The waivers have proven we can meet a lot of people's needs in settings other than nursing homes," he said.

                    In this regard, Maryland is known as a progressive state. The General Assembly has approved legislation known as the Money Follows the Individual Accountability Act, which has increased access to waivers to move disabled residents back into the community.

                    Sabatini said more needs to be done, both to help move people out of nursing homes and to contain the rising costs of long-term care under Medicaid. He wants to turn over the state Medicaid program to an HMO-like system that he said would make long-term care more consumer-friendly and cost-efficient.

                    Under the plan, he said, no nursing home residents would be discharged against their will. But organizations would receive financial incentives to develop alternatives.

                    Some advocates for the disabled said they worry that the plan would simply turn nursing homes into assisted living facilities, another form of institution.

                    Sabatini disagreed. "I think this model provides flexibility," he said.

                    Like the advocates, he said the biggest challenge to getting people out of nursing homes is finding accessible, affordable places to live.

                    "We can say you can go out and get services in the community, and the money follows you. But the housing is not included," he said.

                    Too Few Choices

                    At a recent hearing of the Governor's Commission on Housing Policy in Ellicott City, advocates for the disabled, some in wheelchairs, lined up to testify to that fact.

                    "There isn't a day that goes by that we don't receive a call on housing," said Cheryl Randall of Baltimore-based Making Choices for Independent Living. She spoke of a client who died the day her name finally came to the top of an affordable housing waiting list.

                    Tom Liberatore of the Maryland chapter of the National Multiple Sclerosis Society expressed the problem in dollar terms.

                    "In 2002, the average monthly rent for a one-bedroom apartment in Maryland was equivalent to 134.5 percent of the monthly SSI benefit received by Maryland citizens with disabilities," he testified.

                    The standard Supplemental Security Income benefit amounts to about $560 a month in Maryland, so to afford housing, beneficiaries rely heavily upon rental assistance vouchers. But the federal voucher program is undergoing cuts and is overwhelmed by applications. In the Washington region, the wait
                    for a voucher can stretch for months and often years.

                    Even for people who can afford to pay, the number of apartments that are wheelchair accessible is small.

                    With the help of the FreedomCenter in Frederick, Joseph Boyer Jr., 69, a former construction worker and double amputee, beat the odds.

                    After more than three years in a nursing home, he recently moved into a modest, accessible apartment with the help of a Medicaid waiver for older adults. His daughter and grandson were on hand to celebrate with him.

                    So was his peer mentor, Mary Kemp, who like Boyer lives with diabetes. She worked for a year to help him get the waiver and to find him the apartment equipped with an electric hospital bed and bathroom with grab bars. Boyer will receive twice-daily visits from a home health aide, who will help him with bathing and other tasks.

                    After savoring his new home, Boyer patrolled the parking lot on his electric scooter and checked his new mailbox. Then he sat for a while by his front door, enjoying the speckled shade of a young oak. These small pleasures were missing for him, he said, in those years in the nursing home.

                    Kemp gave him a hug.

                    "It's been a day, Mary," he said to her. "It's been a wonderful day."

                    'Like Hitting the Lotto'

                    Ellen Archie knows the feeling. She was 29 when she awakened from a swimming pool accident in a helpless body. She learned that the injury to her spine had paralyzed her legs and severely curtailed use of her arms. After months of work, she regained the use of a few fingers. She left the rehabilitation center for a nursing home. Days, months and years passed in a limbo of regimented toiletings and feedings. The nights were punctuated
                    by the wails of some of her elderly and demented neighbors.

                    "Is this going to be my life?" she wondered at 34.

                    Then, by chance, she found help from Independence Now.

                    She waited nearly three years for her housing voucher. And when she received it, she knew she had only three months to use it or lose it.

                    After countless telephone calls, she found Alexander House, a

                    wheelchair-accessible building owned by MontgomeryCounty's Housing Opportunities Commission.

                    "Getting a voucher and getting out of the nursing home is like hitting the lotto for $280 million," she says. The challenges, she says, are unimaginable to most people. So are the rewards. "It is magic. And it's good magic."

                    2004 The Washington Post Company



                    ---------------------------------
                    Do you Yahoo!?
                    Yahoo! Mail - 50x more storage than other providers!

                    [Non-text portions of this message have been removed]
                  • AMC Conference Group
                    Hello everyone, I like to thank Rose and Denise for helping me out on September 7th with the AMC Conference Group in yahoo. We had a good turn out. This was a
                    Message 9 of 18 , Sep 12, 2004
                    • 0 Attachment
                      Hello everyone, I like to thank Rose and Denise for
                      helping me out on September 7th with the AMC
                      Conference Group in yahoo. We had a good turn out.
                      This was a great opportunity for us to get to know one
                      another. So be sure to join us on Tuesday. Georgia



                      _______________________________
                      Do you Yahoo!?
                      Shop for Back-to-School deals on Yahoo! Shopping.
                      http://shopping.yahoo.com/backtoschool
                    • Disability With A Smile
                      Hi Everyone Happy Fourth of July...because of the holiday, I have canceled the CochiseAbility AMC chats today, SUNDAY the 3rd and next SUNDAY the 10th. Both my
                      Message 10 of 18 , Jul 3 10:25 AM
                      • 0 Attachment
                        Hi Everyone

                        Happy Fourth of July...because of the holiday, I have canceled the CochiseAbility AMC chats today, SUNDAY the 3rd and next SUNDAY the 10th. Both my moderator and I will be out of town. Thank you....


                        ---------------------------------
                        Yahoo! Sports
                        Rekindle the Rivalries. Sign up for Fantasy Football

                        [Non-text portions of this message have been removed]
                      • Disability With A Smile
                        Hi Everyone I just got back from attending a CIL Summit Conference in Phoenix. It was a meeting of people from all areas of Arizona and Centers for Independent
                        Message 11 of 18 , Aug 12, 2005
                        • 0 Attachment
                          Hi Everyone

                          I just got back from attending a CIL Summit Conference in Phoenix. It was a meeting of people from all areas of Arizona and Centers for Independent Living. I met many staff members at the Embassy Suites in Phoenix/Paradise Valley. While I was attending this conference I was given this site. I hope this helps...http://www.alsa.org/resources/product.cfm

                          Mandy (Disability Advocate with www.cochiseability.org)


                          ---------------------------------
                          Start your day with Yahoo! - make it your home page

                          [Non-text portions of this message have been removed]
                        Your message has been successfully submitted and would be delivered to recipients shortly.