Collaboration In Focus - Federal And
Non-Profit Disability Response To Hurricane Katrina
Saturday, September 3, 2005
Dear Leaders from Private, Non-Profit, and Government Organizations
In the past, I have been in touch with you regularly regarding some of the
latest developments on the disability rights enforcement front from within the
Civil Rights Division of the U.S. Department of Justice. Over time, I have been
in direct communication with many of you on an individual basis as we have
worked collaboratively to devise and then execute innovative strategies to
benefit members of the disability community. As these relationships continue to
flourish, so has our ability collectively to move forward in a united way. Now,
in the aftermath of the ravages of Hurricane Katrina, the worst natural disaster
in American history, I call upon you to come together once again.
To give you an update on the federal response on the disability front, since
Wednesday, I have been in direct contact with disability leaders in Louisiana,
Mississippi, Alabama, Florida, and Texas to obtain the latest information from
the ground regarding the well-being of individuals with disabilities in the
affected areas so that we from the federal government may best determine the
specific needs of those individuals. That ultimately led to a regional
conference call, convened by the Interagency Coordinating Council on Emergency
Preparedness and Individuals with Disabilities, which took place yesterday
afternoon. Chaired by Daniel W.
Sutherland, Director of the Office of Civil Rights and Civil Liberties of the
Department of Homeland Security (on behalf of Secretary Michael Chertoff), this
call brought together key leaders with top officials from across the federal
government who focus particularly on serving people with disabilities. Hosted by
the Office of Disability Employment Policy of the U.S. Department of Labor, the
call devoted attention to identifying the most immediate needs of hurricane
victims with disabilities in order to obtain a prompt government response by key
federal agencies to those needs.
One of the most immediate outcomes was an effort by Dr. Margaret Giannini,
Director of the Office on Disability in the U.S. Department of Health and Human
Services, to communicate directly and quickly with Dr. Mark McClellan,
Administrator of the Center for Medicaid and Medicare, regarding the need for
Medicaid waivers to be accepted across state lines and to expedite Medicaid
claims for individuals with disabilities who were displaced due to the
hurricane. As a result, within a matter of hours, Dr. Giannini announced that
there will be Medicaid waivers between the states housing hurricane survivors
who were already receiving Medicaid to have their Medicaid accepted in their
current location. In addition, Medicaid claims of new prospective enrollees will
be expedited. If or to whatever extent an official statement is released about
Medicaid, I will be sure to forward that information to you.
Meanwhile, Marcie Roth, Executive Director and Chief Executive Officer of the
National Spinal Cord Injury Association, organized leaders from across the
disability community and, with the support of Richard Petty of the Independent
Living Resource Utilization Project (ILRU), assembled a conference call, which
also convened yesterday. It brought together key officials both from within the
disability community and within the federal government, to focus particular
attention on centralizing information about how disability organizations may
provide vital assistance to the relief effort. Consequently, work groups are
being set up to focus on (1) obtaining and channeling financial resources to
help people with disabilities and (2) identifying specific ways that individuals
and organizations or pledging to provide assistance in the affected areas by way
of disability-related expertise, technical assistance, etc.
Below, for your reference, are the following items:
* Notes from the Interagency Coordinating Council meeting on Friday,
September 2, 2005
* Email from Marcie Roth, seeking to centralize information about ways in
which individuals and organizations are ready and available to assist people
with disabilities in the affected areas
* Modified compilation from Mark Johnson, Director of Advocacy at the
Shepherd Center in Atlanta, regarding immediate ways in which to assist with
disability-related relief efforts
To learn about the work of the Interagency Coordinating Council on Emergency
Preparedness and Individuals with Disabilities, visit:
In addition, September is National Emergency Preparedness Awareness Month.
Future email will provide further information about how you, your family, and
people with disabilities you serve may best be prepared for the event of an
emergency (whether natural or man-made).
As always, please forward this email to all those who may benefit from
receiving it. Meanwhile, I will continue to keep you posted on the latest
developments from here in Washington. Thank you for doing everything you can to
help the victims of Hurricane Katrina and for doing your part to prepare for
future disasters. We are all a part of the solution.
Olegario "Ollie" D. Cantos VII
Special Assistant to the Acting Assistant Attorney Civil Rights Division U.S.
Department of Justice
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EMAIL FROM MARCIE ROTH
Please send me the following information ASAP so we can make our case for
disability specialists to be put into place to address disability specific
issues from an advocacy perspective to address both medical and non-medical
needs. I need as much information as possible in the following categories:
* Location (town, state)
* Current living situation
* Immediate needs (medicine, foor, water, sterile catheters, DME -
wheelchairs, air mattresses, seat cushions, for example)
* Additional needs (accessible housing, special education services, for
* Single or family/companions
If you are a CIL or other service provider, what is your current situation?
* What staffing and other resources (computers, cell/SAT phones for
example) are needed? Address, phone, email
* Anything else that will help decision makers to address the additional
disability specific needs of survivors
Please send to firstname.lastname@example.org
. You can reach me at (301) 990-6559 or (301) 717-7447.
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Interagency Coordinating Council on Emergency Preparedness and Individuals
with Disabilities September 2, 2005 4:00 p.m.
On behalf of Secretary Chertoff, Dan Sutherland chairs the Interagency
Coordinating Council on Emergency Preparedness and Individuals with
Disabilities. The ICC includes representatives from 24 federal agencies; there
are eight working groups that focus on emergency transportation, emergency
communications, evacuations from workplaces, and other issues.
On Friday September 2, 2005, the ICC convened a telephone conference with
advocates for the disability communities in Louisiana, Mississippi, Texas,
Alabama and Florida. Approximately 30 people participated in the telephone
A. Key Immediate Issues:
* Need high level person who can resolve problems - a high-level point of
contact within DHS/FEMA and the American Red Cross.
* Shelters and facilities must be accessible to people with disabilities and
to people who have the specialties in providing services to people with
disabilities. The Justice Department can issue a statement on the legal
requirements. However, DHS could issue a statement and operational guidance
* Medicaid problem - pharmacies in neighboring states are not issuing people
their medications because they do not recognize Medicaid cards from the other
states. HHS's representative on the ICC will undertake this issue.
* Housing shortage and that which is available needs to be accessible to
individuals with disabilities.
*Volunteers who are deployed to the region need to understand the special
needs of people with disabilities.
* Immediate need for durable medical goods; limited diet due to medical
* Population increase is such right now that the infrastructure cannot
* Hold a second telephone conference on Tuesday, September 7, 10:30 am.
B. Who's on what base? How do we best coordinate?
* Earlier meeting - Marcy's call - private groups trying to get organized
* ICC call - government, ICC, now engaging with the problems on the ground
* All the recovery and rescue efforts - how do we (ICC and the private
disability rights groups) integrate our ideas into them?
C. What is happening in the affected regions?
Lois - Protection and Advocacy Agency, LA
o Trying to identify where own staff are - 10 of 35 are still missing. They
are reorganizing selves and working out of Baton Rouge office. They should be
able to offer services on Tuesday. Trying to protect the rights of disabilities
of people in the states. Key issues:
- Where did people go? (group homes, nursing homes, supported independent
- Workers are homeless - People who will be coming now won't have the means to
get an apartment
o In dire straits. What is on TV is absolutely accurate.
Bill - LSU
o Citizens now in TX and possibly other states. Issues around transfer of
o Social Security
Mary - Jackson, MS
o Advocates are not allowed to help explain needs of people with
o Advocates cannot go into the shelters
o Going to release HUD houses, but need modifications to make it accessible.
o Shelters - people with severe disabilities are sleeping on concrete floors
o There is a lack of medication
o Interpreters are not permitted into the shelters.
o People with disabilities do not know where shelters are, and groups are
unable to communicate with them.
Elaine - Advocacy Inc - Houston
o Similar difficulty accessing the facilities
o May assert access under federal authorities. Don't want to go to court, but
may need to do so.
o Being told by FEMA and American Red Cross that issues are being handled,
but cannot confirm this.
o Large number of people with mental health issues cannot get prescriptions
as pharmacies are refusing to refill out of state prescriptions.
o People are not viewed as being disabled unless there is something physical
that the person in the shelter can see immediately.
o Turning mental patients away because there are not enough doctors to
o There is a lack of durable equipment.
o Housing - there is a need to match individuals to accessible housing.
o Safety issue: There are serious safety concerns
o How long and where can people access Medicaid services? Is there going to
be some type of system set up for those who are going to be in need?
Yvonne - New Orleans Independent Living Center
o Consumers are in the area and don't have housing.
o Need medical help.
o How can people access medication?
o Soap, clothes, underwear, basics
o Have no where else to go.
o Consumers - Superdome or Convention Center, but the center has no idea how
access these people.
Shellie - Independent Living Center, Mobile, AL
o People moving out of the shelters
o People are traveling north and being turned away from shelters because the
shelters are not accessible. There is no way to track where these people are
Lex - experience from Tropical Storm
o Took three days to be able to communicate outside his home after the storm.
o Agencies need to go house to house to find these folks
o FEMA/American Red Cross - don't publicize numbers where those in need can
call for help. Most people cannot find the aid centers.
o First line people don't have appropriate training to manage people with
o Need to find someone with authority or someone who can get to authority in
order to resolve problems.
o Housing is already full. Even if it is accessible, it will be taken.
o FEMA trailers are not accessible.
D. Open Discussion:
* Medicaid Issue:
* Email for how Medicaid from LA will be accepted in TX, but how can word get
out about this?
* Pharmacies are still refusing to honor word that Medicaid should be
* Social Security:
* Will the offices in the states have some type of replacement?
o Can go to website
o Postal Service has suspended mail and establishing temporary mail locations
o If cannot go to temporary mail station, can go to any social security
o If cannot get to direct deposit, can go to social security office.
* What about people with disabilities?
E. What are the next steps?
* Need a contact in the federal government who can assert the fact that we
should have access to these facilities. In need of an authority to access
quickly to explain to the shelters that the advocacy groups should be allowed
into the shelters. Justice may be able to help.
* How to get the word out? There are professors who are qualified to help
here and can get the word out. We need to tap the folks in each state to help
* When we are talking about people with mental disabilities and other
similar, we need people who are qualified to work with them, not just general
* FEMA/Red Cross folks need to be in contact with the advocacy groups.
* Need a mechanism to elevate these issues and bring them to solution
quickly. Cannot wait for weeks for a decision. Who on the fed government side
has the power to make decisions so that we move this forward? Need a liaison
with Red Cross/FEMA.
* Concern about people with disabilities being left behind.
* Perhaps people who have homes that may be accessible can open their homes.
Call concluded at 17.05 EST.
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MODIFIED COMPILLATION OF MARK JOHNSON
Interagency Coordinating Council on Emergency Preparedness and Individuals
* Daniel W. Sutherland, Chairperson
* Olegario "Ollie" D. Cantos VII, Chairperson TA and Outreach Subcommittee
National Council on Disability
Lex Friedent, Chairperson
(713) 520-0232, Ext. 124
U.S. Department of Health and Human Services
Dr. Margaret Giannini, Director, Office on Disability
INDEPENDENT LIVING CENTERS
National Council on Independent Living
John Lancaster, Executive Director
In addition to coordinated relief efforts for AL, LA & MS, approaches for other
states where people are moving or being moved, is needed.
If you have a particular expertise in the disability rights field and want to
volunteer for relief efforts, please visit:
and click on "Disability Expert Volunteers". This website is adding a message
board to collect this information to serve as the disability community's central
communication point for volunteerism in the affected area.
DATABASE FOR THOSE IN NEED
Send names, etc. to Marcie Roth,
ON THE GROUND - Independent Living Centers
Southeast Region - Dan Kessler, 205) 251-4503,
Louisiana - Mack Marsh, 318-671-8131; email@example.com
Mississippi - Christie Dunaway,
Councils on DD,
MS Coalition, Mary Troope,
National Disability Rights Network (formerly known as "NAPAS"):
DISABILITY SPECIFIC FUNDS
A multi agency, cross disability proposal will be available by September 9th
(tentative). For more information, contact Marca Bristo,
MBristo@aol.com, 312- 253-7000,
In the meantime, several agency and disability specific funds have been created.
CA Foundation for ILCs,
National Down Syndrome, http://www.ndss.org/
Spina Bifida, http://www.sbaa.org
UCP, Houston, http://www.ucphouston.org/
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Olegario D. Cantos VII
Special Assistant to the Acting Assistant Attorney General Civil Rights Division
U.S. Department of Justice 950 Pennsylvania Avenue, NW, Room 5529
Washington, DC 20530
Voice: (202) 616-7920
TDD: (202) 514-0617
Fax: (202) 307-2839