A letter to the President, Enough is Enough
From: Mark_Johnson@shepherd.org  (Mark Johnson)



February 7, 2003

George W. Bush
President of the United States of America
The White House
1600 Pennsylvania Avenue, NW Washington, DC 20500

Dear Mr. President:

On January 21st, a letter was submitted to your office requesting your
immediate assistance in preventing the State of Alabama from unjustifiably
institutionalizing and segregating Nick Dupree and others like him in
nursing homes.

In that letter, we highlighted why Alabama's practice of forcibly
institutionalizing young people with significant disabilities once they
21 and no longer qualify for federally protected EPSDT services violates
both Medicaid law and the Americans with Disabilities Act. We asked you
convince Governor Riley to reverse his State's policy of the forced
institutionalization and segregation of people with disabilities, young or
old. Equally importantly, we noted that because of growing deficits
States are cutting back community living and nursing home transition
services paid for by Medicaid -- the very lifeline to true freedom for
6 millions children, adults and older Americans with disabilities. And,
these reasons, we strongly urged that your Administration take decisive
action to fully enforce the civil rights of people with disabilities
throughout our Nation to live in the community with support rather than be
needlessly institutionalized.

Since then we have heard that discussions are taking place between CMS and
the Alabama Medicaid programs that will hopefully remedy the untenable
dilemma that Nick and many other individuals with significant disabilities
face in Alabama. We are appreciative of these efforts and hopeful that
they will bear fruit both for the many people who are locked away in
nursing homes and other institutions and those like Nick Dupree who are at
immediate risk of entering one because of the near complete lack of community
services throughout the State.

As we have pointed out, however, Alabama is not unique in this regard.
With States facing deepening budget deficit, nearly all are slashing
Medicaid services essential to getting people with disabilities out of
institutions and preventing others from ever going in at all. It is,
therefore, crucial that the White House send a clear message to Alabama and
other States that the federal government will not tolerate the unjustified
institutionalization of people with disabilities anywhere in the Nation.

We strongly urge the Administration to let its views be known on these
crucial matters before 5 PM Monday, February 10th. The federal district
Court in Alabama will begin hearing a case the following day brought by
Nick Dupree to prevent the Medicaid program from cutting off services as of his
21st birthday that are essential to keeping him alive and helping to avoid
his unjustified institutionalization. We know that the Justice Department
seems to have no plans to intervene directly in this case. However, we
believe the issues it raises extend far beyond the State of Alabama and
must be addressed in a very public and explicit fashion by your Administration.

Your Administration also must offer credible evidence as to why it believes
that your Medicaid block grant proposal is consistent with truly realizing
the goal you first set upon becoming President: That of ushering in 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". At that time, you committed to focus the full resources of the
federal government to enforce the ADA and the Olmstead decision that
require States to take every reasonable step to avoid the needless
institutionalization of people with disabilities by offering them services
in their own homes and communities. Frankly, though, people with
disabilities across the country report that little progress is being made
in this respect and that federal enforcement efforts to ensure the civil
rights of people with disabilities to be free from unjust institutionalization are

Similarly, in announcing the Administration's Medicaid block grant proposal
HHS Secretary Thompson used the same rhetoric of the "New Freedom
initiative" and said a prime focus of the plan would be that of
home and community care, and preventing or delaying inappropriate
institutional care." Unfortunately, the financial facts of your
Administration's proposal fail to bear the Secretary's cheerful claims out.
In fact, the huge fiscal restraints the block grant would impose on
and the overwhelming influence the nursing home industry would exert over
how such shrinking resources get spent would produce the opposite results.

We hope and trust that the Administration will comment on and shed light on
all these matters by 5 PM Monday. On Tuesday, we will begin a nonviolent
vigil and fast outside the White House at 10 that morning. This will be
the first of what we believe will unfortunately need to be of many such
undertakings to highlight for the American people how the policies and
practices being pursued by many States and your Administration will
to starve millions of people with significant disabilities - including many
in our Nation's Greatest Generation -- of their dignity and independence by
denying them the basic supports they need to stay alive and live in their
own homes and communities.

September 11th and all that has transpired since then remind all of us how
precious the freedoms that the vast majority of Americans can still enjoy
truly are. Yet, comparatively few yet understand how increasingly fragile
and limited these essential American freedoms to live our lives as we
believe fit and to the fullest are becoming. That is why even as we are
the verge of war and federal and budget deficits that will force
at levels to abandon growing numbers of their citizens, it is clear to us
it was to Dr. Martin Luther King, Jr. that we simply can't wait for our
people's freedom any more. Morally, we cannot allow those freedoms to be
ignored, treaded on, or permanently, place on a waiting list to some
promised far off era of "New Freedom".

Thank you for your consideration of the concerns we have raised in this and
previous correspondence.


Bob Williams, Henry Claypool and Becky Ogle