Sorry for any cross-postings. Susan Gilbert Beck
Re: Collaboration In Focus - Federal And Non-Profit Disability Response
To Hurricane Katrina
From: Justice for All Moderator
Saturday, September 3, 2005
Dear Leaders from Private, Non-Profit, and Government Organizations
Nationwide:
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 compillation 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:
http://www.dhs.gov/DisabilityPreparedness.html
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.
Sincerely,
Olegario "Ollie" D. Cantos VII
Special Assistant to the Acting Assistant Attorney
Civil Rights Division
U.S. Department of Justice
- - - - - - - - - -
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
* Disability
* Immediate needs (medicine, foor, water, sterile catheters, DME -
wheelchairs, airmattresses, seat cushions, for example)
* Additional needs (accessible housing, special education services, for
example)
* Age
* 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 [log in to unmask] You can reach me at (301) 990-6559
or (301) 717-7447.
- - - - - - - - - -
Conference Call
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 conference.
A. Key Immediate Issues:
7 Need high level person who can resolve problems - a high-level
point of contact within DHS/FEMA and the American Red Cross.
7 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 encouraging accessibility.
7 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.
7 Housing shortage and that which is available needs to be
accessible to individuals with disabilities.
7Volunteers who are deployed to the region need to understand the
special needs of people with disabilities.
7Immediate need for durable medical goods; limited diet due to
medical needs.
7 Population increase is such right now that the infrastructure
cannot accommodate.
7Hold a second telephone conference on Tuesday, September 7, 10:30 am.
B. Who's on what base? How do we best coordinate?
7 Earlier meeting - Marcy's call - private groups trying to get
organized
7 ICC call - government, ICC, now engaging with the problems on the
ground
7 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?
7 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:
* Housing
* Where did people go? (group homes, nursing homes, supported
independent living)
* Workers are homeless - People who will be coming now won't
have the means to get an apartment
* Clothes
* Soap
o In dire straits. What is on TV is absolutely accurate.
7 Bill - LSU
o Citizens now in TX and possibly other states. Issues around
transfer of Medicaid
o Social Security
7 Mary - Jackson, MS
o Advocates are not allowed to help explain needs of people with
disabilities.
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.
7 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 monitor them.
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?
7 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 Walkers
o Have no where else to go.
o Consumers - Superdome or Convention Center, but the center has
no idea how access these people.
7 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 going.
7 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 special needs.
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:
7 Medicaid Issue:
7 Email for how Medicaid from LA will be accepted in TX, but how can
word get out about this?
7 Pharmacies are still refusing to honor word that Medicaid should
be accessible.
7 Social Security:
7 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 office.
o If cannot get to direct deposit, can go to social security office.
7What about people with disabilities?
F. What are the next steps?
7 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.
7 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 with this.
7 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 volunteers.
7 FEMA/Red Cross folks need to be in contact with the advocacy groups.
7 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.
7 Concern about people with disabilities being left behind.
7 Perhaps people who have homes that may be accessible can open
their homes.
7 http://www.hurricanehousing.org
Call concluded at 17.05 EST.
- - - - - - - - - -
MODIFIED COMPILLATION OF MARK JOHNSON
[log in to unmask]
WEB SITE
http://katrinadisability.info
Susan Fitzmaurice
[log in to unmask]
COORDINATION
Federal Government
Interagency Coordinating Council on Emergency Preparedness and
Individuals with
Disabilities
http://www.dhs.gov/disabilitypreparedness.html
* Daniel W. Sutherland, Chairperson
[log in to unmask]
(202) 772-9816
* Olegario "Ollie" D. Cantos VII, Chairperson TA and Outreach
Subcommittee
[log in to unmask]
(202) 616-7920
National Council on Disability
Lex Friedent, Chairperson
[log in to unmask]
(713) 520-0232, Ext. 124
http://www.ncd.gov
U.S. Department of Health and Human Services
Dr. Margaret Giannini, Director, Office on Disability
[log in to unmask]
(202) 205-1016
http://www.hhs.gov/od/
INDEPENDENT LIVING CENTERS
List at:
http://www.ilru.org/html/publications/directory/index.html )
National Council on Independent Living
John Lancaster, Executive Director
[log in to unmask]
(877) 525-3409
http://www.ncil.org/
In addition to coordinated relief efforts for AL, LA & MS, approaches for
other states where people are moving or being moved, is needed.
DISABILITY EXPERTS
If you have a particular expertise in the disability rights field
and want to volunteer for relief efforts, please visit:
http://www.KatrinaDisability.Info
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, [log in to unmask], 301-990-6559.
ON THE GROUND - Independent Living Centers
Southeast Region - Dan Kessler, 205) 251-4503, [log in to unmask],
http://www.birminghamilc.org/index.html
Louisiana - Mack Marsh, 318-671-8131; [log in to unmask]
Mississippi - Christie Dunaway, [log in to unmask],
http://www.ccd-life.org/life.htm
OTHER
ARC, http://www.thearc.org/
Councils on DD, http://www.nacdd.org/index.htm
MS Coalition, Mary Troope, [log in to unmask], 601-969-0601,
http://www.mscoalition.com/
National Disability Rights Network (formerly known as "NAPAS"):
http://www.napas.org
DISABILITY SPECIFIC FUNDS
A multi agency, cross disability proposal will be available by September
9th (tentative). For more information, contact Marca Bristo,
[log in to unmask], 312- 253-7000, http://www.accessliving.org/
In the meantime, several agency and disability specific funds have been
created. For example:
ARC, http://www.thearc.org/
CA Foundation for ILCs, http://www.cfilc.org/site
Family Voices, http://www.familyvoices.org/
National Down Syndrome, http://www.ndss.org/
Spina Bifida, http://www.sbaa.org
TASH, http://tash.org/
UCP, Houston, http://www.ucphouston.org/
- - - - - - - - - -
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
Email: [log in to unmask]
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