>
>"ACTION ALERT!!   Segregation and Institutionalization"
>
>Bob Williams and Henry Claypool of Advancing
>Independence: Modernizing Medicare and Medicaid (AIMMM
>For a Better Tomorrow) <[log in to unmask]> write:
>
>Tell the President and the Governor of Alabama to End the
>Forced Segregation of Americans with Disabilities:
>
>Nick Dupree will be forced against his will into a nursing
>home by the State of Alabama after he turns 21 on February
>23rd unless President Bush delivers on his promise to fully
>enforce the ADA's integration mandate.   Nick is not
>unique.   Another young man Alabama needlessly
>institutionalized 195 miles away from everyone and
>everything he knew and loved died a short time later.   As
>more States slash their Medicaid budgets, more of our
>people will end up back in these places or be forced to sit
>in their own waste at home.
>
>The other day in announcing his position on affirmative
>action, the President said that "America's long experience
>with segregation (is) behind us."  Nothing could be further
>from the truth.   We have written the President strongly
>urging him to send clear message to Alabama and other
>States that the unjustified institutionalization and
>segregation of people with disabilities is an egregious
>violation of the ADA that will not be tolerated by the
>federal government anywhere in our great
>Nation.   Specifically, we asked that he immediately:
>
> + Personally contact and convince the new Governor of Bob
>Riley to take executive action to reverse his State's
>policy of the unjustified institutionalization and
>segregation of people with disabilities, whether young or
>old.
>
> + Direct Attorney General John Ashcroft to take all
>necessary action to fully enforce the civil rights of Nick
>Dupree and others with disabilities in the nation to live
>in the community with appropriate supports, free from
>unjustified institutionalization.
>
> + Direct HHS Secretary Tommy Thompson to write every other
>Governor to make clear that any similar policy or practice
>in any other State will not be tolerated and must be
>reversed immediately.
>
>The full text of the letter to the President is at the end
>of this alert.
>
>Call, Write or E-mail President Bush Today - Insist that he
>immediately:
>
>1. Contact and convince Bob Riley to take executive action
>upon becoming the new Governor of Alabama to reverse his
>State's policy of forced institutionalization.
>
>2. Direct Attorney General John Ashcroft to take all
>necessary action to fully enforce the civil rights of Nick
>Dupree and others with disabilities in the nation to live
>in the community with appropriate supports, free from
>unjustified institutionalization.
>
>3. Direct HHS Secretary Thompson to write every other
>Governor to make clear that any similar policy or practice
>in any other State will not be tolerated and must be
>reversed immediately.
>
>Contact Information: Address - The White House, 1600
>Pennsylvania Avenue, NW Washington, DC 20500. White House
>Fax - 202-456-2461.   The Public Comment Line - 202-456-
>1111 or 202-456-6213 TYD/TDD only.   E mail address:
>[log in to unmask]
>
>Call or Write Bob Riley Today - Insist that he take
>immediate executive action as the new Governor of Alabama
>to reverse his State's policy of forced
>institutionalization.
>
>Contact Information:   State Capitol, 600 Dexter Ave.,
>Montgomery, AL 36130-2751.   Phone: 334-242-7100. No
>TTY/TDD numbers or e-mail addresses provided.
>
>Thank you.
>
>Bob Williams and Henry Claypool, Co Directors
>Advancing Independence:  Modernizing Medicare and Medicaid
>Phone: 202-429-6810 E mail:  [log in to unmask]
>
>================================
>
>January 20, 2003
>
>George W. Bush
>President of the United States of America
>The White House
>1600 Pennsylvania Avenue, NW
>Washington, DC 20500
>
>
>Dear Mr. President:
>
>We request your immediate assistance in preventing the
>State of Alabama from unjustifiably institutionalizing and
>segregating Nick Dupree and others like him in nursing
>homes.   We believe the facts of the situation will amply
>demonstrate why your Administration must make it clear to
>Alabama and other States that such conduct is an egregious
>violation of the ADA that will not be tolerated by the
>federal government anywhere in our great Nation.
>
>Mr. President, it is our deep honor to introduce you to a
>young man very much in search of the promise of the
>Americans with Disabilities Act:  Nick Dupree like many
>others his age is still living at home with his parents and
>a brother while attending Spring Hill College in
>Mobile.   He has muscular dystrophy, uses a power
>wheelchair, breathes with a ventilator, lives on the
>Internet and maintains an A - GPA at college.   As a major
>in professional writing, Nick has been hoping to begin his
>career at the Mobile Registrar and to someday move on to a
>larger newspaper.   Simply put, he's in a hurry to make
>something of his life.
>
>But, all of these aspirations and the hard work it he and
>his family have invested to in working to achieve them are
>set to become the bitterest of dreams deferred on his 21st
>birthday this February 23rd.  The reasons for this are as
>follows: Nick and his 18-year-old brother, who also has
>muscular dystrophy, now receive the medically necessary
>services they need to remain alive and to live in their own
>home and community through the State's Medicaid
>program.   As you know, this is because under the federal
>Medicaid EPSDT requirements Alabama like all States must
>provide any child eligible for the program with whatever
>medically necessary services they need until age 21.
>
>These days, however, Nick is dreading the thought of what
>will happen to him on his 21st birthday on February
>23rd.   Because, unless something changes, Alabama Medicaid
>will stop providing him most of the services he needs to
>stay alive in his own home on that day.   The State's
>position is that because the EPSDT requirements will no
>longer apply to Nick when he turns 21 that it can then
>offer him the following untenable and discriminatory
>ultimatum: The State Medicaid program will pay for just 12
>hours of assistance each week through its waiver program -
>less than two hours a day.   Something that State officials
>obviously must recognize is ridiculously far too little to
>offer him or anyone else with significant disabilities a
>real alternative to being unjustifiably
>institutionalized.    Or, it will send him to a Louisiana
>nursing home, 195 miles away.
>
>The distance in miles across two States to the nursing
>homes, though, pales in comparison to how far removed this
>fate would be to Nick's dreams: The active and productive
>life and future that he has worked so diligently to achieve
>and, which he knows otherwise would be well within his
>grasp.   Indeed, no one should be forced into a nursing
>home at 21 or at any age merely for the administrative ease
>and convenience of the State.
>
>Unfortunately, Nick's situation is hardly unique.   Alabama
>makes it a practice of institutionalizing young people with
>significant disabilities simply for turning 21.   In fact,
>another young man it put in the same nursing home for its
>own convenience died a short time later.  By failing to
>provide Nick Dupree and others like him with any real way
>to avoid needless institutionalization, Alabama is not only
>showing a wanton disregard for the law.   It is also
>sentencing them to die an early and undeserved social death
>and perhaps even a physical death as well -- a life of
>State sanctioned segregation and solitary confinement.   It
>is critical, therefore, that your Administration acts
>swiftly to make clear to Alabama and other States that
>practices like this violate core protections of the ADA and
>the Medicaid statute and the federal government will not
>permit them to continue.
>
>Absent your action we have no doubt Nick and many others
>will soon be placed in permanent exile against their own
>free will, the wishes of their families' and the conscience
>of the American people.   Some might scoff at this as
>overly dramatic.   The U.S. Supreme Court did not.   In its
>1999 decision in Olmstead v. L.C., the Court said:
>
>(the) unjustified institutional isolation of persons with
>disabilities is a form of discrimination (that) reflects
>two evident judgments. First, institutional placement of
>persons who can handle and benefit from community settings
>perpetuates unwarranted assumptions that persons so
>isolated are incapable or unworthy of participating in
>community life Second, confinement in an institution
>severely diminishes the everyday life activities of
>individuals, including family relations, social contacts,
>work options, economic independence, educational
>advancement, and cultural enrichment.  -- Cites
>omitted.   See Olmstead v. L.C. (98-536).
>
>Based on this reasoning, it upheld the ADA's integration
>mandate and ruled the law requires States to take every
>reasonable step to avoid such "unjustified
>institutionalization" of people with disabilities by
>offering them services in the "the most integrated setting
>appropriate to their needs".   In practice, this means each
>State must use its Medicaid and other funds to support
>people with disabilities to live in the community rather
>than in nursing homes or other institutions to the maximum
>extent possible.    To do this effectively, a State must
>make certain that when a person leaves a nursing home that
>the "the money follows the person." That is, Medicaid money
>is moved from the nursing home budget over to the community
>side of the ledger.
>
>In a situation like Nick's, it also means the State should
>adopt a "community first" approach.   That is, it should
>spend a similar amount on providing him with community
>living services, as it would devote to institutionalizing
>him in a nursing home.   Both the "money follows the
>person" and the community first principles consistent with
>past policy interpretations made by the U.S. Justice
>Department in this regard, which we hope remain in force
>under Attorney General Ashcroft as well.   Based on what we
>know, however, Alabama seems unwilling to accept or comply
>with this commonsense principle of the ADA.
>
>Similarly, the Medicaid statute requires that all States
>must provide two distinct types of long-term services to
>anyone who is eligible for Medicaid and meets additional
>"level of care" criteria set by the State.   The first and
>most well known of these is, of course, nursing home
>services.   Every State also must provide "for the
>inclusion of home health services for any individual who,
>under the State plan, is entitled to skilled nursing home
>services."   See section 1902(a)(13) of the Social Security
>Act.   Moreover, the legislative history of the benefit
>demonstrates that - nearly 30 years prior to the ADA --
>when Congress added home health services as a mandatory
>benefit to Medicaid in 1967, its did so to assure "the
>availability of both nursing home and alternative
>noninstitutional services".   See the text of S. 1661, 90th
>Cong. (1967).
>
>Clearly, in the 1980's when it created the Medicaid home
>and community based services waiver authority, Congress'
>intent again was to assure that any State that chooses to
>offer these types of services through a 1915(c) waiver must
>do so in a way that would both be cost effective and offer
>a very real alternative to those who "but for the provision
>of such services the individuals would require the level of
>care provided in a hospital or a nursing facility or
>intermediate care facility for the mentally retarded the
>cost of which could be reimbursed under the State
>plan."  See section 1915(c) of the Medicaid statute.
>
>We have laid these facts out because when taken together we
>believe they make a compelling case as to why the federal
>government must intervene in this particular matter.   In
>doing this, it is equally crucial that your Administration
>send a clear message to other States that such violations
>of the ADA and federal Medicaid protections that occur
>anywhere in our country will no longer go unnoticed or
>unchecked by the federal government.
>
>For over two years, Nick and his allies have waged a
>vigorous campaign over the Internet and in the halls of the
>State Capitol in Montgomery to try to right this enormous
>injustice.   He has done this not just for himself but all
>other young people like him, including his younger 18-year-
>old brother with the same condition.  Due to his efforts, a
>bill was introduced last year in the State legislature that
>would have required the State Medicaid program to continue
>to provide young people with significant disabilities the
>services they need to live in their
>community.   Unfortunately, the bill did not passed.
>
>But, no new legislation is needed for you and Governor
>Riley to right this wrong.   The Governor has the power to
>direct that as a matter of State policy that the Alabama
>Medicaid program should no longer force anyone into a
>nursing home simply for turning twenty-one and must instead
>continue to provide the services they need to live in their
>own homes and communities.   The State can do this by
>expanding the hours of help it provides under its waiver
>from 12 hours a week to a more realistic number.   Or, it
>can provide services to Nick and others through its
>Medicaid home health benefit.  As we pointed out, both the
>mandatory Medicaid home health benefit and the 1915(c)
>waiver program are meant to provide people with
>disabilities of every age with a real alternative to a
>nursing home.   And, every State should be expected to see
>that they do.
>
>Your Administration, sir, also has a duty to ensure that
>all States comply with the ADA and the Olmstead
>decision.   Moreover, 71 cents of every dollar the Alabama
>Medicaid program to forcefully institutionalize young
>people like Nick Dupree comes from the federal
>government.   Hence, if the Administration does not help to
>end this practice immediately, it will both become
>complicit in it and fail to meet the federal government's
>own obligation to avoid such discrimination under Section
>5O4 of the Rehabilitation Act.
>
>Upon taking office, you pledged yourself and your
>Administration to working to ensure an era of New Freedom
>in which "all Americans with disabilities, whether young or
>old, can participate more fully in the life of their
>communities and of our country".   More recently, in
>commenting on Senator Lott's controversial remarks, you
>also forcefully made the point that:   "Every day our
>nation was segregated was a day that America was unfaithful
>to our founding ideals." Unfortunately, Mr. President, many
>form of segregation still exist in our great Nation.   And,
>we respectfully and urgently request that you do all that
>you can to put an end to this particularly pernicious form
>of State and federally sanctioned segregation as it
>persists to this day.   Specifically, we ask that you
>immediately:
>
>Personally contact and convince Governor Bob Riley to take
>executive action to reverse his State's policy of the
>unjustified institutionalization and segregation of people
>with disabilities, whether young or old.
>
>Direct Attorney General John Ashcroft to take all necessary
>action to fully enforce the civil rights of Nick Dupree and
>others with disabilities in the nation to live in the
>community with appropriate supports, free from unjustified
>institutionalization.
>
>Direct HHS Secretary Tommy Thompson to write every other
>Governor to make clear that any similar policy or practice
>in any other State will not be tolerated and must be
>reversed immediately.
>
>In closing, let us that emphasize we recognize that due to
>the worsening economy and State budget crises, Governors
>and State Legislature are being forced to make deeper and
>deeper cuts in their Medicaid programs.   We believe that
>these policy makers are faced with Solomon like choices
>that no American public servant should ever have to
>make.   We, therefore, strongly urge you to propose and/or
>support legislation that would provide increased federal
>funding for Medicaid, provided that States show how they
>will fully comply with the ADA as well as other vital civil
>rights and Medicaid protections.
>
>But, to paraphrase Dr. Martin Luther King, Jr. - federal
>fiscal relief or not, State budget shortfalls or not -- we
>can't wait for our ancient freedoms as Americans any
>longer.   Morally, America can't allow any of our young
>people or those of any age to be unjustifiably
>institutionalized.   And, collectively, we believe that we
>must be accountable for living up to the true intent and
>letter of the ADA in full.
>
>Mr. President, we wish to thank you in advance for the
>leadership that you and your Administration will hopefully
>demonstrate in addressing these crucial human and civil
>rights matters.   Thank you very much.
>
>
>Sincerely,
>
>
>Bob Williams                Henry Claypool
>Co-Directors, AIMMM
>
># # #
>
>=====================
>
>JUSTICE FOR ALL -- A Service of the
>American Association of People with Disabilities
>www.aapd-dc.org     www.jfanow.org
>
>There's strength in numbers!  Be a part of a national
>coalition of people with disabilities and join AAPD today.
>www.aapd-dc.org
>
>
>
>
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