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 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 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 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

- - - - - - - - - -


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, air mattresses, 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 mroth@spinalcord.org . 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:

* 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 encouraging accessibility.

* 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 needs.

* Population increase is such right now that the infrastructure cannot accommodate.

* 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:

- 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.

 Bill - LSU

o Citizens now in TX and possibly other states. Issues around transfer of Medicaid

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 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?

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.

 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.

 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:

* 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 accessible.

* 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 office.

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 with this.

* 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.

* 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.

* http://www.hurricanehousing.org

Call concluded at 17.05 EST.
- - - - - - - - - -




Susan Fitzmaurice


Federal Government

Interagency Coordinating Council on Emergency Preparedness and Individuals with
* Daniel W. Sutherland, Chairperson
(202) 772-9816
* Olegario "Ollie" D. Cantos VII, Chairperson TA and Outreach Subcommittee
(202) 616-7920

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
(202) 205-1016


List at:
http://www.ilru.org/html/publications/directory/index.html )

National Council on Independent Living
John Lancaster, Executive Director
(877) 525-3409

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.


Send names, etc. to Marcie Roth, mroth@spinalcord.org,  301-990-6559.

ON THE GROUND - Independent Living Centers

Southeast Region - Dan Kessler, 205) 251-4503, dgkessle@bellsouth.net,

Louisiana - Mack Marsh, 318-671-8131; mmarsh@nhilc.org

Mississippi - Christie Dunaway, lifeofms@aol.com http://www.ccd-life.org/life.htm


ARC, http://www.thearc.org/

Councils on DD, http://www.nacdd.org/index.htm

MS Coalition, Mary Troope, mary@mscoalition.com,  601-969-0601,

National Disability Rights Network (formerly known as "NAPAS"):


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, 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: Ollie.Cantos@usdoj.gov





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