March 2, 2004
The Honorable Tommy Thompson
Secretary
Department of Health and Human Services
200 Independence Avenue, S.W.
Washington, DC 20201
Dear Mr. Secretary:
We are writing as organizations representing people with disabilities. Nearly 3
years ago, President Bush pledged to bring about New Freedom in the lives of
people with disabilities and that he would devote the full resources of the
federal government to ensure that states carry out the Olmstead decision. As
you know, we have lent our support and participated in key aspects of this
initiative. Specifically we strongly support the Money Follows the Person
demonstration as well as several of the New Freedom proposals in the
President's budget for FY 2005.
We must go on record, however, as strongly objecting to the way in which this
Administration misuses the principles of self determination, independent living
and consumer direction to further policies that will undercut those very
values. We also are deeply outraged by the actions the Administration is taking
to fundamentally weaken the Medicaid program through changes to the current
open-ended financing system for Medicaid.
The major flaw in Medicaid for Americans with disabilities of every age and in
every state is the pernicious institutional bias. It is a bias that forces too
many to be needlessly institutionalized and others in the community to have
their need for assistance with eating, dressing and going to the bathroom go
unmet. Demonstration projects like those the President has proposed can help
some states to begin to remedy these discriminatory practices and fundamental
inequities. Demonstrations alone, however, are not in anyway an acceptable or
adequate way to address these major flaws in our how our nation finances
community based long-term services and supports.
This is particularly true when the Administration is aggressively pursuing an
agenda to undermine the basic protections and structure of Medicaid. All of
which is being done in a way that would steadily deplete the resources that are
available at the federal or state levels to finance the necessary range of
health and community based long-term services.
The disability community along with many other consumer and
provider organizations strongly opposed the Administration's 2003 Medicaid
proposal that called for capped funding for Medicaid and enable states to
eliminate the comparability requirements of Medicaid. We are increasingly
troubled by a range of Administration waiver initiatives which all lead to
individual or global funding caps in Medicaid. Recent actions by HHS can only
be seen as an attempt to do through administrative action what the
Administration failed to win Congress' approval for last year. We seriously
question whether you as the Secretary have sufficient statutory authority to do
so. These types of waivers make for bad public policy that will do very real
harm to millions of children, adults and older Americans with disabilities
throughout our Nation.
According to recent media reports, Governor Craig Benson of New Hampshire and
other Governors are seeking your approval to waive the fundamental consumer
protections of Medicaid in order to be free of federal financing requirements.
We are especially concerned that there appears to be a quid pro quo of
short-term federal relief through the approval of state financing practices
that are being questioned in other contexts in exchange for states submitting
waiver proposals that would cap the federal financial obligation to state
Medicaid programs. Such waivers do not further the goals of the Medicaid Act;
indeed, they would render it obsolete.
These waivers, if approved, would have serious negative consequences for people
with disabilities of all ages. The budget crises states have faced in the last
year or two demonstrate the havoc in the lives of people with disabilities and
others caused by cuts in Medicaid services. The types of consequences faced by
children, adults and older persons with disabilities are unimaginable to most
Americans. These cuts in Medicaid have already led, to situations where far too
many children, adults and older Americans with disabilities:
By capping federal Medicaid spending through Section 1115 waivers,
the Administration is ensuring that: 1) states will continue to be forced to
eliminate rather than expand community living services; and, 2) More people
with disabilities will remain unjustly institutionalized or live in the
community but experience the real harm and indignities of having their most
basic human needs go unmet.
We find this intolerable.
We, therefore, strongly call on you to immediately stop all efforts in HHS
related to the consideration and approval of any new waiver of this kind. If
you are unwilling to do this we believe that before you approve any Section
1115 waivers that would require global caps that you should meet with a diverse
range of representatives of the disability community and explain steps that you
are prepared to take to ensure that individuals with disabilities will continue
to receive all necessary services to which they are currently entitled.
At the same time that the Administration is pushing its waiver initiatives, it
is making changes to longstanding financing practices under the guise of
cracking down on fraud and abuse. Unfortunately, the Administration's recent
rushed attempts to make revisions to the financial reporting form CMS-37 and
other recent policies, however, suggest that these efforts are not being taken
in a careful and considered way. This is imperative because we believe that
your first responsibility must be to protect the stability and security of the
health coverage that Medicaid provides for more than 50 million low-income
people.
We ask that before the Administration makes changes to current rules for
financing the state share of Medicaid costs that the Department consults not
only with states, but beneficiaries, providers, and other essential Medicaid
stakeholders.
We strongly urge the Administration, Congress and the Governors
join the disability community in adopting the Medicaid Community Attendant
Services and Supports Act (MiCASSA) as the basic framework for making genuine
progress in this area. Now is the time to strengthen the Medicaid program, not
to weaken and destroy it. Strengthening Medicaid means that the Administration
and Congress must take steps to:
The collective result of the Administration's Medicaid policies is
that people with disabilities are promised new freedoms, but we are given new
insecurity. Our criticism may seem harsh, but we believe it is both honest and
necessary for you and others to hear. We are ready to work with the
Administration to eliminate the institutional bias and enable people with
disabilities across our nation to finally come to know real and lasting
freedom. Toward this end, we request a meeting with you in the third week of
March -- when several of us will be in Washington, DC -- to discuss the
concerns we have raised in this letter and hopefully agree on a more
constructive path for moving forward. Thank you.
Sincerely,
ADAPT
Advancing Independence
American Association of Persons with Disabilities
National Coalition for Disability Rights
National Council on Independent Living
National Spinal Cord Injury Association
Paralyzed Veterans of America
CC: Senator Charles Grassley
Senator Max Baucus
Representative Billy Tauzin
Representative John Dingell