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ADAPT |
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Nationally ADAPT focuses on promoting services in the community instead of warehousing people with disabilities in institutions and nursing homes. Attendant services (help with things like eating, dressing, toileting, moving from wheelchair to bed, etc.) are the cornerstone to community based services for people with severe disabilities. ADAPT is working to get 25% of the Medicaid long term care funds redirected to pay for a national, mandated attendant services.
ADAPT Concludes Successful Week in Washington, D.C. 9/25/05
ADAPT, the nation's largest grassroots disability rights organization, came to Washington, D.C. on September 17 with a simple message on Medicaid cuts and housing, "Don't target low-income people with disabilities." They left on September 22, having made their point to the Congressional leadership, the National Governors Association (NGA), and officials at Housing and Urban Development (HUD), and Health and Human Services (HHS).
Outraged by Congressional plans to cut $10 billion from the Medicaid budget, on Monday, September 19, 104 of the 500 ADAPT activists were arrested after occupying the offices of Senators Grassley (R-IA), Reid (D-NV) and Frist (R-TN), and Representatives Pelosi (D-CA), Barton(R-TX), Hastert (R-IL) and Delay (R-TX). The next day, all of Congress read about ADAPT's demand for no caps or block granting in Medicaid, and restoration of the planned $10 billion in cuts on the front page of their in-house newspaper, Roll Call.
On Tuesday, HUD Secretary Alphonso Jackson came out of the HUD, building to
face ADAPT and committed to work with ADAPT on Section 8 housing voucher implementation
after ADAPT appeared at both his house in Alexandria, VA, and HUD headquarters
in D.C. While ADAPT waited for Sec. Jackson, the Democratic National Committee
hand delivered a statement from DNC Chair, Howard Dean, on the aftermath of
Hurricane Katrina, supporting ADAPT's position on fixing the current dysfunctional
disability service and support system instead of putting on a legislative bandaid
that provides little, if any relief, to anyone. The statement read, in part;
"We have an opportunity to address the problems revealed in the aftermath
of this tragedy. Americans need real leadership that includes a reconstruction
effort that includes the needs of Americans with disabilities, one that provides
a model for a system in which Americans with disabilities are integrated into
their homes and communities and not forced into nursing homes and institutions.
President Bush and Republicans in Washington should join Democrats in working
to ensure that Americans with disabilities are fully integrated into our society
and included in our emergency preparedness plans, so that, moving forward, they
are never again left behind."
Since ADAPT's "visits" to both HUD and the Department of Health and
Human Services (HHS), HHS Secretary Dr. Margaret Giannini has begun to gather
information about Katrina evacuees with disabilities shipped to nursing homes
around the country, and has pledged to work with HUD to get those people into
temporary community housing, just like other evacuees.
On Wednesday, ADAPT took their demands to the National Governors Association,
marching the two miles to NGA offices behind a flower draped casket that represented
those who have died waiting for community-based services. NGA Executive Director,
Ray Sheppach came outside to address the ADAPT demands, promising to fax the
demands to all of the nation's
governors, but generally framing his own responses to the demands with the NGA
party line about "states rights." "Funny thing about states rights,"
said Wisconsin ADAPT Organizer, Toby Tyler. "The states don't want the
federal government telling them what to do to run their affairs, yet they have
no qualms about telling us what to do to run ours. Well, we aren't about to
let that go unchallenged. ADAPT will start hitting the nation's governors, and
will keep on hitting them until they stop targeting low income people with disabilities
with their budget cuts."
104 Arrested as ADAPT Occupies
House and Senate Leadership Offices 9/20/05
Fed up with being the targets of Congressional
Medicaid cuts, and being pitted against Katrina survivors for essential services,
500 ADAPT activists occupied the offices of Congressional leaders for 5 hours
Monday, resulting in 104 arrests. "Low income people with disabilities
are hemorrhaging as a result of the continual cuts to Medicaid by the states
and Congress," said Barb Toomer, ADAPT Organizer from Utah. "The leaders
of the House and Senate are obviously in position to stop the bleeding, so we
came directly to them. We feel these cuts very personally, and we wanted the
Senators and Representatives to feel it personally, too."
Entering the offices of Sen. Bill Frist (R-TN), Sen. Chuck Grassley (R-IA),
Sen. Harry Reid ( D-NV), and Rep. Nancy Pelosi (D-CA), Rep. J. Dennis Hastert
(R-IL), Rep. Tom Delay (R-TX), Rep. Joe Barton (R-TX), ADAPT presented each
with the following demands;
1. Support restoration of the proposed $10 billion Medicaid cuts.
2. No arbitrary caps on Medicaid, or block granting of Medicaid funds.
3. Eliminate the institutional bias in Medicaid by supporting MiCASSA (S .401,
H.R. 910 ) and Money Follows the Person (S. 528, H.R. 3063)
4. Fund HUD housing vouchers for all people transitioning from nursing homes
and other institutions to integrated community living.
5. Sponsor an initiative to address long term care services, durable medical
equipment, assistive technology, support services, service animals and community
housing for Katrina evacuees with disabilities.
The occupation of the offices in the Hart,
Cannon, and Rayburn buildings followed a morning press conference held next
to FEMA Headquarters, and attended by FEMA staff. ADAPT Organizers from Louisiana,
Mississippi and Alabama called into the press conference from their home states
to inform the crowd by speakerphone about the state of affairs for Katrina survivors
with disabilities in their respective areas. They spoke of people with disabilities
being the last people evacuated, being actually turned away from shelters because
of their disabilities or because they had no attendants with them, being separated
from family, caregivers and
necessary equipment and service animals, and now languishing in nursing homes
and other institutions unconnected to the official resources being made available
to the majority of Katrina survivors.
"This really is a matter of our life and death," said Randy Alexander, Tennessee ADAPT Organizer. "A few months ago, Tennessee Gov. Bredesen drastically cut back TennCare, including home care services for people who use ventilators. He openly admitted that he was forcing these people into nursing homes. Just today we got word that we have suffered the first death of a ventilator user, the first casualty of Gov. Bredesen's heartless cuts. Unless Congress acts, the deaths will continue."
ADAPT is in Washington through Thursday of this week to demand legislation and
policy from any corner of the federal government with the power to assure that
people with disabilities of all ages have what they need to live lives of dignity
and choice in their communities.
Katrina's Impact on the Disability
Community:Immediate Needs and Long Term Consequences Resulting from Inadequate
Government Policy 9/20/05
Immediate impact on survivors with disabilities; While nursing homes and other
institutional settings were an understandable evacuation alternative as a first
response, they are no more appropriate for the long term than are the shelters
like the Astrodome. Both need to be short term so
people can resume/rebuild lives in the community as quickly as possible.
In the evacuation process, people with disabilities were separated from their wheelchairs and walkers, canes and service dogs, caretakers and family members. As a result many people ended up being sent to nursing homes because they were perceived to need more assistance than they typically do. It is imperative to reunite people with family members and caregivers and service animals, and to replace their assistive equipment so they can resume/rebuild their lives in the community as quickly as possible.
People with disabilities have been grossly undercounted and unnoticed because
many bypassed shelters when they were immediately sent to nursing homes, institutions
and/or hospitals. These institutional settings, especially those spread across
the country, are not being served by the FEMA Super Service Centers. It is imperative
that an accurate accounting occur to identify all the people with disabilities
of all ages who were temporarily sent to nursing homes in Louisiana and many
other states, and that an inventory of their needs be compiled.
Service coordination and brokering is essential to bridge the gap between the
persons with disabilities rendered homeless by Katrina and the accessible homes,
transportation, services and supports they need to resume/rebuild their lives
in the community as quickly as possible.Centers for Independent Living, local
Arcs and People First groups, and other community-based disability organizations
are experts on people with disabilities and their service and support needs.
Funding them to provide service coordination/brokering for Katrina survivors
would be cost effective, provide competent, knowledgeable assistance, and prevent
the need to "re-invent the wheel."
Longer term impact on entire national disability community; The needs, services and supports of poor people with disabilities must not be pitted against the needs, services and supports of the Katrina survivors. Policy formulated to assist survivors of Katrina should not provide a stop-gap bandaid solution to a gaping wound in the current disability service system. Reforming the system to heal the wound for ALL Americans will prevent the need for similar stop-gap initiatives in the future.
People with disabilities and other poor people have been waiting for as long as 10 years in some states for affordable/accessible/HUD subsidized housing. Over and over, they have been told "there is no housing." In the aftermath of Katrina, great stocks of affordable/HUD subsidized housing suddenly materialized. Like those who, thankfully, survived Katrina, poor people with disabilities also need homes, and want to end their homelessness. HUD, Congress and the President must find ways to help Katrina survivors that don't decimate the already critical lack of resources available to poor people with disabilities.
Legislation just proposed in the Senate provides that the Medicaid dollars paying for disabled Katrina survivors in nursing homes and institutions would follow them, assisting them to return to their former or new communities, and not be forced to remain in the nursing homes and other institutions. This enlightened common-sense solution should be available to ALL persons with disabilities, being exactly what people with disabilities have been advocating for the past 25 years. In addition, when this legislation passes, it should assure that people with disabilities in the states, who have again been waiting for years for funding that will allow them to return to or remain in their own homes and communities, will not be pushed to the back of the line by the Katrina survivors in need. As hard and tirelessly as FEMA and the Red Cross worked in this unprecedented national disaster, Katrina exposed the frightening lack of knowledge and experience of both agencies when it comes to people with disabilities, the systems that serve them, and the critical need for service co-ordination/brokering in order to assure that people with disabilities are not left behind to die, or left unserved when the crisis is over.
Comprehensive and long-term planning efforts
must be adequately funded and
need to meaningfully involve people with disabilities so that the result
will be an expert national network that can mobilize immediately to see to
the very particular and specific needs of persons with disabilities in
disaster situations. In order to assure quality outcomes, the federal
government must invest in a quality process.
ADAPT Gets Commitment From HUD Secretary Jackson on Voucher Implementation 1/19/2005
Just to be sure HUD Secretary Alphonso Jackson got the point that ADAPT wants HUD vouchers for people transitioning out of nursing homes and institutions into community living, ADAPT delivered the message simultaneously at Jackson's home in Alexandria, Virginia, and HUD headquarters in D.C. The strategy paid off when Secretary Jackson came down to HUD plaza to personally meet with protestors, and commit to work with ADAPT on voucher implementation.
"We are pleased that Sec. Jackson did what no HUD Secretary before him
has
done, namely, come to us in the street, outside the HUD fortress, and
pledge to work together to improve the lives of people with disabilities,"
said Shona Eakin, Pennsylvania ADAPT Organizer. "We have made real
progress in recent years getting people out of nursing homes using our own
ingenuity, perseverance, and the Medicaid System Change Grants. Our
biggest challenge remains finding accessible, affordable, integrated
housing for people to move into when they leave the nursing home."
Along with voucher implementation, follow-up with Jackson will also
address the problem of affordable housing stock becoming suddenly
available, then just as suddenly disappearing, in the wake of Hurricane
Katrina. Many people with disabilities and other low-income people have
waited as long as ten years for their names to rise to the top of Section
8 waiting lists in their home communities. As some of those communities
have suddenly become home to tens of thousands of survivors of Katrina,
thousands of affordable housing units "magically" appeared to help
house
them. The question is, with so many people with disabilities waiting for
that housing, where did those units come from, and why weren't they being
used for people who were kept waiting for years? And now that those units
are being used to house Katrina survivors, what does that mean for the
disability community and other low-income people on waiting lists for
housing?
"I've been waiting for a long time for my name to get to the top of the
Section 8 waiting list in Atlanta," said Susan Edwards, a Georgia ADAPT
member. Before Katrina, Section 8 told me I was number 100 on the list.
Since Katrina they told me that I am now number 300, and unless both my
parents die it will be a long, long time before I get Section 8. I'm
really glad that Secretary Jackson is going to work with ADAPT on voucher
implementation for people leaving nursing homes, but what about me? Will I
die before my name gets to the top of the list and I finally get a chance
to have my own home, too?"
Lack of accessible, affordable, integrated housing remains the greatest
barrier to community living for people who are currently warehoused in
nursing homes and other institutions. The dearth of housing surpasses even
the universal lack of adequate community based services and supports.
According to statistics compiled by the Centers for Medicare and Medicaid,
more than 300,000 of the million and a half people in the nation's nursing
homes want to move back into the community. That will only be possible
with enough accessible, affordable, integrated housing, and
community-based services and supports.
S 1716, Disaster Relief Medicaid bill
September 19, 2006
Chairman Charles Grassley
United States Senate
Washington, DC 20510
Re: S 1716, Disaster Relief Medicaid bill
Dear Chairman Grassley:
We want to begin by thanking you and your committee for working very hard in
a bipartisan way to address the needs of people in the Gulf states whose lives
have been so drastically affected by Hurricane Katrina. Of the various disaster
relief options that have been put forth, your proposal is the only one to substantively
deal with specific issues and concerns of people with disabilities. We are grateful
for your leadership in this regard. Another disaster could be around the corner.
We need to address this NOW.
This letter is from several disability organizations the American Association
of People with Disabilities, the National Council on Independent Living, the
National Spinal Cord Injury Association, and ADAPT all consumer-driven
organizations with many members in the affected states. According to a poll
last week by The Washington Post, The Kaiser Family Foundation, and the Harvard
School of Public Health, of the 61% who did not evacuate before the storm, 38%
said they were either
physically unable to leave or had to care for someone who was physically unable
to leave. We recognize that all of America is concerned about the devastation
caused by Katrina, but to those of us in the disability community this situation
is of crucial importance.
Since many individuals with disabilities depend on Medicaid and/or Medicare
for their health and long-term supports, we appreciate several of the provisions
in S 1716, the Disaster Relief Medicaid bill. The presumptive eligibility, 100%
FMAP coverage, the streamlined access to Medicaid benefits, the extended mental
health benefits, and the portability of the coverage are all excellent provisions.
However, we do want to point out a few of our concerns:
•Coordination of the services being provided. Katrina exposed the lack
of experience of FEMA and the American Red Cross in dealing with the needs of
persons with disabilities in disaster situation. We applaud you for recognizing
the need for care coordination through special provisions in this bill that
provide for care coordination services on top of the state Medicaid plan. We
strongly believe it is imperative to involve people with disabilities in this
effort.
Recommendation: Create Coordinating Councils in each state
to work with the state Medicaid office. This Council would include Medicaid
consumers from various populations and disability organizations, as well as
agencies such as Red Cross, FEMA, and other state entities.
• Duration of the 100% FMAP. Ending all 100% FMAP payments after five
or ten months could become a major disincentive to host states in providing
HCBS and other expanding medically necessary services, given they would recognize
that they would need to pay their share for those services once DRM ends. In
many instances, in fact, it would take states at least a couple of months to
identify and bring on HCBS providers and develop other necessary supports.Alternatively,
some states might be forced to discontinue or reduce HCBS waivers to both survivors
as well as their own residents when DRM ends in order to make up for the funding
shortfall.
Recommendation: Give the Secretary of HHS the authority to
develop a plan with each state for phasing out the DRM FMAP over a longer period
(e.g., 18 to 24 months) if a state can demonstrate that doing is absolutely
essential to the continued health and well-being of a particular group of beneficiaries.
• Institutionalization. Untold thousands of people with disabilities on
Medicaid are needlessly institutionalized in every state
of our country. A fifth of all nursing home residents indicate that they want
to return home. They and others wait every day for the supports to be developed
so that they could move back into their wait homes and communities. They are
waiting for the most basic of American freedoms. An estimated 200,000 people
with disabilities living in the community are on waiting lists for the Medicaid
services they need to keep from going into a nursing home. Their wait for such
vital supports should not be made longer due to this disaster. They must not
be ignored in the understandable rush to enact relief legislation.
Recommendation: In enacting this legislation, Congress must
take deliberate steps to avoid making a bad situation that existed prior to
Katrina with regard to a nationwide shortage of Medicaid community living services
even worse. One specific way this could be done is to provide states with the
funding to meet the most pressing community living needs of their own residents
even as they are meeting the needs of hurricane survivors with disabilities.
Such money is desperately needed to help people move from nursing homes into
the community and assist others to continue to live at home.
In closing, we again want to thank you and your committee for this important
legislation, and we support it. However, we do hope that our concerns can also
be considered and included, if not in this legislation, perhaps a companion
bill. As Mark Johnson, a disability advocate from Georgia, stated: We understand
why people with disabilities were evacuated without their wheelchairs, service
animals, and caretakers. In an emergency, you do whatever you have to do to
get the most people out in the quickest way possible. However, now that the
immediate crisis of evacuation is past, Chairman Grassley, we ask that you and
other members of Congress ensure that the invisible emergency of poverty and
disability services many of us face every day is addressed in ways that could
be a real turning point in our country.
Sincerely,
American Association of People with Disabilities
ADAPT
National Council on Independent Living
National Spinal Cord Injury Association
ADAPT is headed to DC, September 17-22, http://www.adapt.org/bulletin.htm .We're in the process of gathering stories about people with disabilities impacted by Katrina. We're particularly interested in people who utilize home and community based services (HCBS). Since last week advocates have been visiting evacuees in nursing homes and when possible, shelters. Some of the people PLACED in nursing homes were living in there own home. Our concern is without advocacy and service coordination they could get stuck. If you are aware of specific people having this or related experiences,
PLEASE send Marsha Katz, adaptmt@aol.com, information (names, brief explanation
of situation and contact information) ASAP. Remember we need specifics.
Free Our People,
ADAPT
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Copyright @ 2005 by Susan Fitzmaurice All Rights Rserved