The Arc of  California
Updated: October 13, 2005
Disaster Preparedness

This was formerly the Disaster Relief page and is under reconstruction to become a resource for disaster preparedness and homeland security for people with developmental disabilities, their families, and advocates.
 
Disaster Relief (Hurricane Katrina)
This section of the disaster preparedness page was developed during the following months after the Hurricane Katrina devastated parts of Alabama, Louisiana, and Mississippi.  It's purpose was to serve as a resource page for people interested in helping people with disabilities affected by the terrible conditions as well as supporting neighboring states (i.e., Texas) who are providing immediate support.  We have maintained this section at the request of several advocates who find this section interesting and helpful in their current advocacy.

How can I give financial support to relief victims with developmental disabilities?

How can I support relief efforts for people with developmental disabilities in ways other than giving money?
  1. The ArcLink
  2. Comprehensive Katrina Disaster Relief Information for People with Disabilities
  3. Louisiana Katrina Relief Website
  4. The Arc of Utah
  5. National Association of State Directors of Developmental Disabilities Services
 
What about the disability community as a whole?
  1. Support efforts in Houston
  2. Support efforts in Louisiana & Mississippi
  3. The National Council on Disability (NCD) - Resources/Publication
  4. NCD Implications and More Resources
  5. The National Child Traumatic Stress Network website
  6. California State Independent Living Council
 
Government Services and Supports
  1. Interagency Coordinating Council on Emergency Preparedness and Individuals with Disabilities
  2. CA Office of Emergency Services
  3. Social Security
  4. Information concerning HIPAA & Hurricane Katrina
  5. National Association of State Directors of Developmental Disabilities Services
  6. Federal Government's Web Portal for Disaster Relief
  7. Center for Medicaid and Medicare Services (CMS)
  8. Interagency Coordinating Council on Emergency Preparedness and Individuals with Disabilities
  9. First Gov (English)  (Spanish)
  10. Letter from AAMR
 
More Links and Resources
  1. Advocacy Center - Louisiana
  2. Disability Policy Collaboration Update October 7, 2005
  3. Disability Policy Collaboration Update September 30, 2005
  4. TASH Relief Efforts for Katrina Victims with Special Needs
  5. Resources from the CA Family Resource Centers Network
  6. Other Resources and Donation Sites
  7. New Orleans letter to America
 

 

 

 

 

&
Many of you have been asking about a relief fund for people with developmental disabilities in the areas hit by Katrina.  The Arc has developed a mechanism for serving as a conduit for donations for our constituents and The Arc of California will be contributing.  We are also asking all members and friends of The Arc to send your support, in any way you can, for our constituents with developmental disabilities and their families as they endure this natural disaster.  
 
Dear Friends,
Our nation is experiencing a catastrophe unlike no other in our history. There are literally countless people in need of assistance of virtually every kind: money, shelter, food, clothing, and every other basic necessity you can name.  We’ve heard from many of the chapters in the affected areas and so far, there are no reports of injuries or loss of life within our chapters. However, there is considerable property damage to the facilities of The Arc’s chapters in the states hit by Katrina.

The Arc of the United States would like to serve as a conduit for donations to the chapters urgently in need of our support. We will be accepting donations through our web site at www.thearc.org and the red Donate Now button (be sure to select The Arc's Katrina Relief Fund under the section of my gift is, "In Support of:" ) and through regular mail sent to:
 
The Arc of the United States
ATTN: The Arc's Katrina Relief Fund
1010 Wayne Avenue, Suite
650, Silver Spring, MD 20910

We pledge that 100 percent of these donations will be used on people rather than on buildings and structural repairs.  In addition, there will be no administrative costs deducted from your donations. All monies pledged will go to the chapters in the states affected by Katrina. We can’t possibly raise enough money to return things in those chapters to anything near normal. But our generosity will make a difference, and right now, making a donation may be all we can do to help. Of course, we will be looking for opportunities to coordinate donations of support that is needed beyond money.

Already, chapters are demonstrating their commitment to The Arc family. Executive Director of The Arc of Greater Houston Judith Kantorczyk has offered to find shelter for our constituents who may be evacuated to the Houston area.  Rebecca Shuman, Executive Director of The Arc of New Mexico, has pledged two donations of $1,000 apiece to The Arc of Louisiana and The Arc of Greater Houston. Outgoing Executive Director of The Arc of the United States Steve Eidelman and incoming Executive Director, Sue Swenson have each pledged $100 and have challenged NCE members to match the donation.

If you have any questions about the The Arc's Katrina Relief Fund, please contact Amy Curtis at curtis@thearc.org or call 301-565-5451.  Thank you for considering a donation to provide relief to our colleagues and constituents affected by the disaster.
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FOR IMMEDIATE RELEASE - PLEASE DISTRIBUTE WIDELY
 
RELIEF FOR KATRINA VICTIMS WITH SPECIAL NEEDS
 
INDIANAPOLIS, INDIANA, SEPTEMBER 2, 2005 – In the wake of Hurricane Katrina and the subsequent flooding, there are now are hundreds or thousands of people with special needs and their families with no homes, no jobs, and in need of urgent assistance. TheArcLink has created a central online clearinghouse so that family members, case managers, service coordinators or advocates can list people or families who need support.
 
In addition, people from anywhere in the country can use the site at www.thearclink.org to offer housing and supports, employment, and other assistance.
 
“There are many people who can offer their personal services to assist in the transition of people into new locations and services, or to contribute other volunteer time, either in person or via telephone,” said TheArcLink’s President Elbert Johns. “In some cases reimbursement may be available, and in those cases payment delays may or may not occur. We’d like to offer the site as a means to post announcements of a number of different types of support.”
 
Anyone who knows of hurricane victims in Alabama, Louisiana, or Mississippi with special needs and/or families who need immediate services and supports can list them on the site. The site will be particularly useful for case managers, service coordinators, state officials and other advocates, but the site is open for use by anyone.
 
Site visitors can submit the names of those in need of temporary or permanent jobs and can relocate or people in need of assistance can list themselves.
 
Employers with job opportunities can list them on the site, particularly jobs with disability services organizations or other human services agencies. The site is open to any employer in any field that has jobs to offer displaced hurricane victims. In addition to employment postings, the site can be used to offer short-term or long-term housing to those fleeing from areas affected by Hurricane Katrina.
Specific to people with disabilities, group home vacancies and related day services opportunities can be listed.  Reimbursement by Medicaid or state funds may or may not be immediately available.
 
Those wishing to make a financial donation to people with intellectual disabilities affected by Hurricane Katrina can visit The Arc of the United States’ web site at www.thearc.org and click on the red Donate Now button.  The Arc will channel 100 percent of all funds donated to its chapters in the affected areas. There will be no overhead costs deducted and funds will be used to meet the most immediate needs of food, clothing, medicine, and shelter.
 
To visit the Katrina Special Needs Assistance Page, go to www.thearclink.org and click on “Katrina Special Needs Relief.”  This page is a free public service of TheArcLink Incorporated and The Arc of Louisiana.
 
TheArcLink Incorporated is the first web site to provide customized, specific information on the various sources of assistance available to individuals with disabilities and their families on a state-by-state basis as well as information on almost 30,000 providers.
 
The Arc of the United States is the nation’s largest volunteer-based organization devoted to issues concerning people with intellectual disabilities and their families.  The Arc has 130,000 members and nearly 1,000 chapters nationwide.
CONTACT:
Elbert Johns                     
(812)327-2955                   
ejohns@thearclink.org
or    
Chris Privett
(301) 565-5454
privett@thearc.org
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forwarded by Mike Collins, Executive Director, California State Independent Living Council
Sandra Bookman, Executive Director
Houston Center for Independent Living
7000 Regency Square Blvd
Suite 160
Houston, TX 77036
Be sure your checks indicate that they are for Hurricane Relief.
The HCIL phone number is 713-974-4621

For the past few days, I have been receiving calls from people who are facing mixed levels of grief and worry about the situation in the Southeast.  Until the 'aftermath' photos proliferated, few of us realized that the water that swept the MS & LA coasts rivaled the Christmas tsunamis in Asia.  Calls to our SILC and IL colleagues are blocked by the overloaded communications network, and constant media portrayals of the widespread looting and flooded neighborhoods bring on the realization that there may be nothing left for a large number of survivors to return to when this is finally over...if it is.

The federal and state relief efforts are well underway, as advance warnings about the Hurricane Katrina path allowed for more preparation than we're granted in many other types of disasters.  The Red Cross collection machine is operating at full speed, and I know that many of you have made personal contributions directly or through the many media telethons taking place across the nation.  That's a good start.

Many people with disabilities, of all ages, are now refugees far from where they lived.  Too many of these individuals lost loved ones or all of their possessions, and will need to reestablish most aspects of their lives.  It may be months before they can be returned to their home towns, if they have any reason to return.  In the meantime their needs will have a major impact on the communities where they are being temporarily housed or sheltered.  An example is what is happening in Houston, the nearest major (and dry) city to New Orleans.  About 10,000 people are being bused from the Superdome to the Houston Astrodome.  Many more have already arrived, and are occupying other shelters and public buildings.  Most are arriving dirty, exhausted, and with no personal belongings or cash.  The major relief agencies will provide them with toiletries, clean clothes, food, and even some spending money. But there won't be much else for awhile.

When people with disabilities are evacuated, the emergency services personnel are interested in saving their lives--not bringing along bulky items like wheelchairs, walkers, lifts, medication, durable medical supplies or service animals.  Many of these evacuees will be unable to purchase such new items, and those on Medicare or Medicaid will endure a long process to gain approval for replacement items.  The Houston CIL has offered to be a resource for any evacuee with a disability, and will be setting up a resource table in the Astrodome once the buses stop arriving.  They are in need of contributions to purchase disability-related items, and perhaps services, that aren't available from other sources.

If you'd like to assist the evacuees who are now in Houston, through the Houston CIL, send your checks to the following addressee:

Sandra Bookman, Executive Director
Houston Center for Independent Living
7000 Regency Square Blvd, Suite 160
Houston, TX 77036
Be sure your checks indicate that they are for Hurricane Relief.
The HCIL phone number is 713-974-4621
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While the damaged Centers for Independent Living in LA and MS may have no 'physical' office facilities for awhile, their recovery activities will carry on.  The message from ILRU that follows will give you some suggestions for sending money to assist.  While I have been unable to reach the responsible SILCs in the region, I know they can also distribute donations efficiently to where they're needed.

For the Louisiana SILC:
Louis Prejean, Executive Director
Louisiana Statewide Independent Living Council
P.O. Box 94004
Baton Rouge, LA 70804
Phone number is 225-229-7552

For the Mississippi SILC:
Shelia Browning, SILC Liaison
Department of Rehabilitation Services
1281 Highway 51 North
Madison, MS 39042
Phone number is (601) 853-5209

Once you read the following email, you'll have several other options for assuring that your donations reach people with disabilities.  A future message will address the questions of those who want to donate 'goods.'

Thanks for your help,
Mike Collins
California SILC

From ILRU:

Dear IL Colleague,

As you may know, the Centers for Independent Living in Biloxi, Mississippi and New Orleans have been gravely affected by the hurricane. In fact the Biloxi, MS center was totally destroyed. Many of you are asking how you can help. Here is what we have learned from colleagues in those states.Sending money is the first priority. Sending supplies to those centers is helpful too but NOT RIGHT NOW, because they can't get through the water.

Here are the suggested options for right now:

1) Send a check or credit card payment to the Red Cross and designate it for Hurricane Relief, or designate it for people with disabilities in the Biloxi/Hattiesburg or New Orleans areas.

2) If you want to send money for the CILs that are dealing with this disaster directly, here are your options:

For the Biloxi Center, mail the check (payable to LIFE of Central MS and designated for the Biloxi Center) to:

LIFE of Central Mississippi
754 North President Street, Suite 1
Jackson, MS 39202

For the centers in Louisiana (make checks payable to Resources for Independent Living - this is a branch of the N.O. center - and designate for the New Orleans center)and mail to:

Resources for IL
11931 Industriplex Blvd. Suite 200
Baton Rouge, LA  70809

We have also learned from Mack Marsh of the Shreveport Center that centers in Shreveport, Baton Rouge, and Lake Charles are assisting evacuees.  Mack says they would also appreciate supplies if there is any way to get those supplies to the centers.  His list includes: manual wheelchairs, hospital
beds, adult diapers, bed pads, catheters and other supplies. The address for the Baton Rouge center is shown above, addresses for the Shreveport and Lake Charles centers follow.

Southwest LA Independence Center, Inc.
Mitch Granger
1202 Kirkman, Suite C
Lake Charles, LA 70601

New Horizons, Inc.
Jerry Kidwell
9300 Mansfield Road, Suite 204
Shreveport, LA 71118

We will keep you informed of any additional ways that you can help. Feel free to forward this information to other people interested in the needs of people with disabilities affected by this disaster.

Dawn Heinsohn
IL NET: ILRU/NCIL National Training and Technical Assistance Project
ILRU Program
2323 S. Shepherd, Suite 1000
Houston, TX  77019

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State Office of Emergency Services has learned that trapped victims on the Gulf Coast are calling family, friends, loved-ones, or anyone they can get a call out to in California asking for someone to rescue them.  These requests need to go immediately to the US Coast Guard's Rescue Line at 800-323-7233 and immediate assistance will be sent.
Please distribute this information as widely as possible.
Thank you.
Eric Lamoureux
Chief, Office of Public Information
California Governor's Office of Emergency Services
Ph. 916-845-8400
Cell. 916-869-3367
Pgr. 916-845-8911
Fax. 916-845-8444
eric_lamoureux@oes.ca.gov
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Go to the Social Security website for more links:
http://www.socialsecurity.gov/emergency/
 
Social Security Information for People Affected by Hurricane Katrina The Social Security Administration is doing everything it can to ensure that monthly payments get to beneficiaries affected by Hurricane Katrina.
 
For paper checks
The United States Postal Service (USPS) has suspended mail service in some areas damaged by Hurricane Katrina. USPS is establishing temporary mail delivery stations so you can pick up your Social Security check. To find these locations, check the USPS National Mail Service Update page.
 
To help prevent identity fraud, USPS will ask you for a photo ID.
 
If you are not able to go to a temporary mail delivery station, you can go to any open Social Security office and request an immediate payment.
 
For Direct Deposit
If you receive your Social Security payment by direct deposit, your Social Security payment is scheduled to be deposited to your account as usual. However, if you experience any difficulty getting your payment, you can go to any open Social Security office and request an immediate payment.
 
Closed Social Security Offices
As of 9/1/05 the following Social Security offices are closed:
  1. Louisiana
  2. New Orleans Downtown
  3. New Orleans Bywater
  4. New Orleans East
  5. New Orleans Westbank
  6. Kenner
  7. Hammond
  8. Covington
  9. Bogalusa
  10. New Orleans Teleservice Center
  11. Office of Hearings and Appeals, Metairie
  12. Office of Hearings and Appeals, New Orleans
  13. Disability Determination Services, New Orleans (Metairie)
  14. Mississippi
  15. Gulfport (Closed indefinitely)
  16. Moss Point (Closed indefinitely)
  17. Biloxi (Closed indefinitely)
  18. Meridian (No Power)
  19. Hattiesburg (No Power)
  20. Laurel (No Power)
  21. Mississippi Disability Determination Services (should be reopened by Tuesday, September 6, 2005.)
  22. Office of Hearings and Appeals, Hattiesburg (No Power)
 
For more information on the nearest open Social Security office, you can call 1-800-772-1213 (TTY 1-800-325-0778).
 
Go to the website for Other Useful links:
http://www.socialsecurity.gov/emergency/
FirstGov: Hurricane Katrina Recovery (en Espaqol)
USPS National Mail Service Update page
American Red Cross:
Call 1-800-HELPNOW (1-800-435-7669)
Get disaster information in English and en Espaqol.
CDC: Hurricane Katrina (en Espaqol)
Federal Emergency Management Agency (FEMA) HHS, Administration on Aging
Disaster Preparedness Manual for the Aging Network
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National Council on Disability Calls for Federal Disability

Recovery Plan in Response to Hurricane Katrina

WASHINGTON The National Council on Disability (NCD) expresses its deep concern for the tremendous loss of life and devastation caused in the southern part of the United States by Hurricane Katrina and urges the Federal Government to craft a strong coordinated Federal Disability Recovery Plan for the victims and survivors of the hurricane.

According to NCD chairperson Lex Frieden, Current data indicates that people with disabilities are now most at risk in this situation and will need recovery assistance for months or years. A disproportionate number of the Hurricane survivors are people with disabilities whose needs for basic necessities are compounded by chronic health conditions and functional impairments. Relief agencies must prioritize efforts and take special steps to address the unique and complex needs of this population.

NCDs 2005 report titled Saving Lives: Including People with Disabilities in Emergency Planning
(http://www.ncd.gov/newsroom/publications/2005/publications.htm) recommends immediate federal changes in emergency planning for people with disabilities. NCD encourages Hurricane Katrina responders to follow the findings and recommendations in this timely report.

Saving Lives: Including People with Disabilities in Emergency Planning, NCDs 2005 report, provides an overview of steps the Federal Government should take to build a solid and resilient infrastructure that will enable the government to include the diverse populations of people with disabilities in emergency preparedness, disaster relief, and homeland security programs. This infrastructure would incorporate access to technology, physical plants, programs, and communications. It also would include procurement and emergency programs and services.

NCD commends the Administration and those in leadership positions for the issuance of the July 22, 2004, Executive Order on people with disabilities and emergency preparedness. In addition, NCD acknowledges the work of the Department of Homeland Security (DHS) and the Federal Communications Commission (FCC) in their efforts to ensure that Americans with disabilities are included in the developing infrastructure.

All too often in emergency situations the legitimate concerns of people with disabilities are overlooked or swept aside. In areas ranging from the accessibility of emergency information to the evacuation plans for high-rise buildings, great urgency surrounds the need for responding to the concerns of people with disabilities in all planning, preparedness, response, recovery, and mitigation activities. The homeland security terrorist event of September 11, 2001, as well as the recent energy blackouts in the U.S. Northeast and Midwest and, more recently, the natural disaster hurricane events in Florida, the tsunami event of 2004, and this most recent event, Hurricane Katrina, underscore the need to pay attention to the concerns raised in this report, Frieden said.

The decisions the Federal Government makes, the priority it accords to civil rights, and the methods it adopts to ensure uniformity in the ways agencies handle their disability-related responsibilities are likely to be established in the early days of an emergency situation and be difficult to change if not set on the right course at the outset. By way of this report, NCD offers advice to assist the Federal Government in establishing policies and practices in these areas. This report provides examples of community efforts with respect to people with disabilities, but by no means does it provide a comprehensive treatment of the emergency preparedness, disaster relief, or homeland security program efforts by state and local governments.

Please visit https://disasterhelp.gov/portal/jhtml/index.jhtml, the Federal Governments Web portal for disaster information and help.

For more information, contact Mark Quigley at 202-272-2008.
Mark S. Quigley
Director of Communications
National Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004
202-272-2008
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National Council on Disability on Hurricane Katrina Affected Areas
 
Basic Info
People with disabilities in the Gulf Coast areas of Alabama, Mississippi, and Louisiana are experiencing tremendous loss of life and devastation caused by Hurricane Katrina. Current data indicates that people with disabilities are now most at risk in this situation—and will need recovery assistance for months or years. A disproportionate number of the Hurricane survivors are people with disabilities whose needs for basic necessities are compounded by chronic health conditions and functional impairments.
 
For example:
In Biloxi, Mississippi, a city of about 50,000 people, 26 percent of residents are people with disabilities. This means that there are 10,700 people with disabilities 5 years of age and older who live in Biloxi.
In Mobile, Alabama, a city of 198,915 people, 24 percent of the residents are people with disabilities. This means that there are 43,000 people with disabilities 5 years of age and older who live in Mobile.
 
In New Orleans, a city of about 484,000 people, 23.2 percent of residents are people with disabilities. This means that there are 102,122 people with disabilities 5 years of age and older who live in New Orleans.
 
Who are the 102,122 people with disabilities who live in New Orleans? About 10 percent (or 12,000) of them are people ages 5 to 20 years old; 61 percent (or 63,000) of them are aged 21 to 64 years old; and 29 percent (or 27,000) of the people are 65 years of age and older.
 
The 102,122 people with disabilities living in New Orleans include people who are blind, people who are deaf, people who use wheelchairs, canes, walkers, crutches, people with service animals, and people with mental health needs. At least half of the people with disabilities in New Orleans who are of working age are not employed. Many of the people rely on a variety of government programs such as Supplemental Security Income and Medicaid to help them meet their daily service and support needs.
 
Implications
 
The total destruction of the physical environment and public/private infrastructure and communications systems in the Gulf Coastal areas affected by Hurricane Katrina has life-threatening implications for all citizens with disabilities, and those without disabilities. The implications for these people include:
 
Where to go for help?
 
People with disabilities affected by Hurricane Katrina should try to contact their local emergency response officials by using the 9-1-1 system. This system will handle voice and TTY callers.
 
Louisiana government officials advise that in addition to the existing special needs shelters that have opened in Alexandria and Monroe, shelters have been opened in two other communities in Louisiana. These shelters are staffed by the Department of Health and Hospitals and Department of Social Services. While these shelters are open it is strongly encouraged that citizens first try to evacuate to the north with their families and get out of harm’s way. These are shelters of last resort and are not for the general public.
 
At 10:00 am this morning, an additional shelter was opened in Lafayette. At this time, special needs shelters have been opened in Alexandria, Monroe, Lafayette, and Baton Rouge. Due to the uncertainty of the damage that Baton Rouge and Lafayette will sustain from the storm, DHH officials stress that it is very important to move to a shelter further north in Alexandria or Monroe if at all possible.
 
Special Needs Shelters are designed for individuals who are homebound, chronically ill or who have disabilities and are in need of medical or nursing care, and have no other place to receive care.
 
Those seeking shelter will be screened by nurses to determine the level of care needed. Only people who meet admission criteria can be sheltered. If their condition is too critical, they will be referred to a hospital for sheltering, or admission. If their condition is not severe enough for Special Needs Sheltering, they will be referred to a general shelter.
 
Special triage telephone lines are being established in each region to accept the calls of citizens seeking special needs sheltering. Citizens with special needs seeking shelter must call telephone number in their area BEFORE attempting to access a shelter. These numbers are listed below.
 
Alexandria:                   800-841-5778                Shreveport:                   800-841-5776
Baton Rouge:                800-349-1372                Monroe:                       866-280-7287
Houma/Thibodaux:       800-228-9409               Slidell/Hammond:           866-280-7724
Lafayette:                      800-901-3210               
Lake Charles:                866-280-2711                           
 
Special Needs Shelters are not designed for the general public or for nursing home patients. Nursing homes in Louisiana are required to have emergency evacuation plans in place that ensure the health and safety of their residents. In most instances, these plans allow for homes in affected areas to transport their patients to nursing homes in areas safe from the storm.
 
Health officials note that if individuals have health problems that require medical expertise and must evacuate, it is best for them to go with family members or caretakers north and west to areas that are out of harm’s way. These will provide medical support services only. Because of limited staffing, those going to a Special Needs Shelter must have a caretaker to assist with ongoing support and they should bring all necessary supplies including sheets, blankets and pillows.
 
Community And Residential Services Association (CARSA), a trade organization for providers of services with developmental disabilities, in cooperation with the ARC of Louisiana, the Developmental Disabilities Council and The Advocacy Center, is available to assist families who may have relatives who were evacuated from community homes and other service programs in the Greater New Orleans area. Families seeking information may call the following numbers for assistance:
 
CARSA – 225-343-8811
 
The ARC of Louisiana – 1-866-966-6261
 
Developmental Disabilities Council – 1-800-450-8108
 
The Advocacy Center (Baton Rouge) – 1-800-711-1696
 
The Advocacy Center (Lafayette) – 1-800-822-0210

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State Directors:
 
We would like to thank everyone who has offered to assist the three states respond to the disastrous aftermath of hurricane Katrina. We just received the following message from Kathy Kliebert, from Louisiana’s Office of Citizens with Developmental Disabilities providing contacts for state officials, providers and individuals who are offering assistance or requesting information. As you might imagine, coordination is critically important right now and people are strongly urged to channel all communications through the teams and individuals Kathy has identified in her message to avoid confusion and duplication of effort. We will provide updates and pass on additional information as soon as it becomes available.
Chas Moseley
 
Louisiana Message:
The Office for Citizens with Developmental Disabilities has been working over the last several days to assure that people with developmental disabilities are being evacuated to safe places in the aftermath of Hurricane Katrina.  We have been overwhelmed by both requests for information as well as offers of assistance.  In order to respond to the needs of people with developmental disabilities in Louisiana, I have established four OCDD Response Teams to more effectively handle the requests from both people with disabilities, their families, providers, employees and the community.  This will include requests regarding ICF/MRs, waiver supports and services, state funded services, etc. The teams established and their functions are as follows:
 
Location Team:  This team will be working on locating people with developmental disabilities and their families that have been displaced.  They will be coordinating with Medicaid and other agencies to determine where people were located and will begin efforts to find out where they have relocated. 
 
Relocation Team:  This team will handle requests and questions regarding re-location of people with developmental disabilities. This includes anyone that has been displaced and was receiving services or in need of supports.  Some requests this team will field will be those regarding location of temporary, semi-permanent and permanent housing, re-location of other supports, and payment of re-located services.  They will also obtain information on any residential resources that are available both within and outside the state, looking at both public and private providers.
 
Employee Location/Relocation:  This team is tasked with locating employees that have been displaced.  They will work on the details of relocating offices and staff if necessary and resuming services for the affected areas. 
 
Donations of time, staff, money or other resources:  This team will field offers of donations of funds, staff, volunteers. etc.  that would assist people with developmental disabilities. They will coordinate efforts with other agencies on the receipt and dissemination of these resources.
 
We are trying to establish a Nationwide Toll Free number for access to these teams.  Until that number is established, please contact us through the Baton Rouge state office at 225-342-0095.  I will forward the Toll-Free Number as soon as it is established. 
 
Thank you for your support in this time of need and please keep all of the people affected by this tragedy in your thoughts and prayers.  
Kathy Kliebert
 
 
From: Charles R. Moseley, Ed.D.
Director of Special Projects
National Association of State Directors of Developmental Disabilities Services
113 Oronoco Street
Alexandria, VA 22314
Tel: (703) 683-4202
Fax: (703) 684-1395
Email: cmoseley@nasddds.org
Web Site: http://www.nasddds.org

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The Arc of Utah is calling for Volunteer Homes
 
1000 refugees from Hurricane Katrina will be arriving in Utah in the next few days. The first group of refugees will be arriving this afternoon.  There is concern that some of the individuals will have developmental disabilities. The Arc is calling for volunteers who are willing to house individuals with developmental disabilities and potentially their families.  If you are able and willing to offer assistance at this critical time, please contact:
Doug Hathaway
Executive Director
The Arc of Utah
(435) 427-3653 (home office or (801) 842-7586 (cell)
or email to: execdirector@arcutah.org
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A Message from:
Olegario "Ollie" D. Cantos VII
Special Assistant to the Acting Assistant Attorney Civil Rights Division
U.S. Department of Justice
 
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
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Press Release by the California State Independent Living Council
Michael C. Collins, Executive Director
(866) 866-7452 (Toll-free) (916) 505-4273 (Cellphone)
California’s Disability Community Helping Katrina Survivors with Disabilities
In response to pleas from Centers for Independent Living in the Southeastern states, Independent Living Centers and similar disability organizations in California have mobilized to gather and ship new and used Durable Medial Equipment or Goods to the cities where survivors are being housed temporarily.   According to the Washington, DC-based National Council on Disability (NCD), almost 200,000 people with disabilities lived in the path of Katrina’s destruction and over 100,000 of them lived in New Orleans.  Many more people have been injured or fallen prey to diseases caused by the unsanitary conditions, and will require long-term care to recover.
Lex Frieden, Chair of the NCD who lives in Houston, stated that “those who have survived the fury of the hurricane, the flooding, the disease, crime and squalor of the temporary mass shelters are now being shipped to cities that are being overwhelmed in trying to meet the needs of such large numbers of people with significant disabilities or chronic medical conditions.”  In order to evacuate the large number of survivors from the New Orleans area, people with disabilities were often forced to abandon their wheelchairs, walkers and other medical equipment. When they arrived at their new shelters outside the disaster zone, replacement items were scarce or unavailable.
California’s Independent Living Centers, which are community-based non-profit organizations serving people with disabilities of all ages, have offered to serve as the collection points for new or used items to be delivered to the survivors who are disabled.  “We know that many people who receive new replacement equipment, or recover from an injury or illness, keep the older items in case they’re ever needed, “ according to Michael Collins of the State Independent Living Council in Sacramento, “The items gathering dust in garages and storage units around the state could make a real difference to a survivor who cannot move without assistance at a shelter.”  Since many people who are elderly, and children, need replacement items too, it is hoped that the agencies serving such age groups will join in the California collection drive.  For anyone who would prefer to donate money that will assist local disability organizations in the Southeast, the California Foundation for Independent Living Centers is also accepting such donations at cfilc.org.
 
Because the deliveries of donated goods need to be coordinated with a local organization capable of temporary storage and effective delivery to the people who really need the equipment and supplies, it is being requested that advance contact be made with a recipient agency near the shelter sites.  California’s Independent Living Centers have made those contacts, and will coordinate shipment of the needed items.  To find the location of the nearest Independent Living Center or community collection drive, call the State Independent Living Council at (866) 866-7452 or view the address list at www.calsilc.org.
###
Sidebar:
The following checklist will assist communities or organizations that want to start a donation drive for disability-related items:
1.  To hold an effective donation drive, enlist every disability- or aging-related community organization, and the media, in the process.  Include groups like the Lions, Rotary, Kiwanis, Scouts, AmeriCorps, Area Agencies on Aging, Regional Centers and fraternal or faith-based groups in the publicity and collection phases.
2.  Be specific about the items needed (ask the local Independent Living Center or recipient agency for that 'wish' list.)  Some basics are:
a. Wheelchairs or electric scooters (with seat cushions)
b. Walkers, transfer lifts, canes or crutches
c. Adult diapers and disposable bed pads, and
d. Catheters, elastic stockings, and drain bags
3.  Assure that items are in workable condition, and clean, before loading them on a truck or into a container.
4.  Offer to pick up items at houses or stores for transport to the collection site (many donors won't have the means to do so).
5.  Seek out a donor for transport to the final destination, and publicize that generosity. Candidates would be cross-country freight haulers, grocery or retail chains, airlines, national delivery services, and non-profits with collection trucks.
6.  Seek out local groups at the destination to help with distribution.  AmeriCorps and the other organizations listed in step 1 (above) can be a key component in that delivery phase.
7.  Solicit feedback on the impact of the donated goods, and share it with your local community--and the media.  One suggestion is to encourage donors to attach their name and address to the items they donate, so recipients can send a ‘thank you’ note if they choose to do so.
8.  When this disaster and its aftermath are finally over, congratulate yourselves--and your community--for a job well done!
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More Disaster Relief Resource (from Lynda Carson of Rents Rule)

>>>Resource List To Find Housing For Disaster
Victims<<<
 
http://www.hurricanehousing.org/
 
****************
Resources to help victims of Hurricane Katrina
 
A number of relief agencies are accepting contributions for victims of Hurricane Katrina. In most cases, the agencies prefer donations of money rather than goods.
 
American Red Cross: To donate, go to
www.bayarea-redcross.org; call (415) 427-8000 or (800) 435-7669; or mail a contribution to 85 Second St., Eighth Floor, San Francisco, CA 94105. The Red Cross will be assessing damage, operating shelters, providing food and cleaning up. Two emergency response vehicles have already left from the Bay Area, and more deployments are expected.
 
Salvation Army: Donations can be made via the group's Web site, www.salvationarmyusa.org; by calling (800) 725-2769; or by mail at Salvation Army, Attention:Hurricane Katrina Fund, P.O. Box 193465, San Francisco, CA 94119- 3465. The organization expects to serve 400,000 meals a day to victims and first responders.
 
United Way of the Bay Area Hurricane Katrina Relief
Fund: Donations can be made online at www.uwba.org or by calling (800) 273-1779.
 
Operation Blessing: (800) 436-6348 or www.ob.org.
 
America's Second Harvest: (800) 344-8070 or www.secondharvest.org.
 
Adventist Community Services: (800) 381-7171 or www.adventist.communityservices.org.
 
Catholic Charities USA: (800) 919-9338, or www.catholiccharitiesusa.org.
 
Christian Reformed World Relief Committee: (800)
848-5818 or www.crwrc.org.
 
Church World Service: (800) 297-1516 or online at www.churchworldservice.org.
 
Convoy of Hope: (417) 823-8998 or
www.convoyofhope.org.
 
Lutheran Disaster Response: (800) 638-3522 or www.elca.org/disaster.
 
Mennonite Disaster Service: (717) 859-2210 or www.mds.mennonite.net.
 
Nazarene Disaster Response: (888) 256-5886 or www.nazarenedisasterresponse.org.
 
Presbyterian Disaster Assistance: (800) 872-3283 or www.pcusa.org/pda.
 
United Methodist Committee on Relief: (800) 554-8583 or gbgm-umc.org/umcor/emergency/hurricanes/2005 
 
Several organizations are also accepting donations for animal victims of the disaster:
 
American Humane Society: www.americanhumane.org.
 
Humane Society of the United States: www.hsus.org.
 
Louisiana Society for the Prevention of Cruelty to
Animals: www.la-spca.org/home.htm
 
Local Forums and Resources:
 
The National Next of Kin Registry
http://pleasenotifyme.org/nok/restricted/home.htm
 
Craig's List neworleans.craigslist.org/laf/
 
NOLA.com (The Times-Picayune) www.nola.com/
 
WWL-tv www.wwltv.com/forums/viewforum.php?f=16
 
RoommateClick.com Site offering a service for the New Orleans homeless, free of charge.
 
State, Local, National Goverment Agencies:
 
Federal Emergency Management Agency: 1-800-621-FEMA; www.fema.gov
 
Louisiana Homeland Security: www.ohsep.louisiana.gov
 
City of New Orleans: www.cityofno.com/portal.aspx
 
Louisiana Governor's Office: www.gov.state.la.us/
 
Mississippi Emergency Management: www.msema.org
 
National Hurricane Center: www.nhc.noaa.gov
 
National Weather Service:
iwin.nws.noaa.gov/iwin/graphicsversion/bigmain.html
 
Hydrologic Information Center (river flooding):
www.nws.noaa.gov/oh/hic/index.html 
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HIPAA Information
In light of the devastation that Hurricane Katrina has caused to parts of the country, we wanted to emphasize how the HIPAA Privacy Rule allows covered entities to share patient information to assist in disaster relief efforts, and to assist patients in receiving the care they need.  This information is in a Special Bulletin, which you can readily access from the “What’s New” column on the OCR website, http://www.hhs.gov/ocr/hipaa/, by clicking on Hurricane Katrina Bulletin:  Disclosing PHI in Emergency Situations.
 
We are pleased to be able to keep you informed about these and other new resources available to assist you in understanding the HIPAA Privacy Rule.
Steven M. Eidelman
Robert Edelsohn Chair and Professor in the
Field of Services for Adults with Developmental Disabilities
College of Human Services, Education and Public Policy
Department of Individual and Family Studies
Alison Hall West, University of Delaware
Newark, DE 19716
Office Telephone 302-831-8536
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From the California Family Resource Center Network:

Good Morning

 
Jeff Simpson, dad of a preemie and author of "Alex, The Fathering of a Preemie" has compiled a list of sites and organizations that are geared towards assisting families of children with special health care needs in the areas affected by Hurricane Katrina.  You may view it at www.jeffslife.net/katrina.html.
 
Take care,
Debbie
--
Debbie Sarmento
FRCNCA Coordinator
916-962-0832
916-962-0493 fax
debrasarmento@comcast.net

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Letter from the President of AAMR
Valerie Bradley
Dear Friends:
 
I know that you have all been deeply moved by the tragedy that we have all seen unfolding on our televisions over the week.  The desperation of the faces and the enormity of the circumstances of the victims has caused us to ask “what can we do?”  There are of course the obvious routes that are being publicized including contributing to the Red Cross.
 
My thoughts, and I’m sure yours, have also gone to the problems facing people with developmental disabilities on the Gulf Coast.  These are adults and children who may have been relocated from their homes, are in need of medicine and attention, or who are with families that no longer have a livelihood.  Therefore, I am devoting this letter specifically to the ways in which you can make a contribution that will help to improve the lives and well being of these individuals and their families.
 
The information about places to send money and to offer other forms of support changes daily so AAMR will put new information as it becomes available up on our website. 
 
We have heard from some of our friends on the Gulf Coast and know that they are okay including Mark Yeager, Pam Baker and Suzie Lassiter in Mississippi.  Suzie emailed that “Our staff is having a difficult time as well.  At least 60 % of my staff have damage to their homes and the estimate is that 60% of Pam Baker’s staff has lost everything.  We thought Camille was bad but we were wrong.”  Sharon Gomez, Alma Stewart, and Karen Reeves and their colleagues in Louisiana have also checked in as well as Eranell McIntosh Wilson in Alabama.  There are still colleagues that we have not heard from and hope they are safe.
 
The consensus is that people who were in organized residential settings are probably better off (relatively speaking) than families and people living with minimal supports.  From what we can determine, many of those people have been relocated.  In Alabama, there was minimal need for relocation.  For that reason, we have included sites that will help such individuals as well as those in supported settings.
 
In Mississippi, our members have told us that the biggest needs are among families with no money and no ability to secure medical care.  There are two ways to contribute.  First, the Mississippi AAMR chapter will disseminate monies to families in that state.  Gloria Johnson, Mississippi AAMR, P.O, Box 128, Magee, MS 39111.  Second there is an organization supporting families with children with autism that will get money out to families.  Please contact: TEAAM (Together Enhancing Autism Awareness in Mississippi) Mark H. Yeager, Ph.D., P.O. Box 128, Newton, MS, 39345.
 
In Louisiana, the Office of Citizens with Disabilities has set up response teams to manage the influx of offers of support including financial assistance, assisting with relocation of individuals with disabilities as well as DSPs.  They have established a toll free number that can be accessed from 7 am to 7pm 7 days a week.  It is a Nationwide Toll Free Number so that those out of state can call in as well.  The toll free number is 1-866-783-5553.  Phone service in Louisiana is spotty at best so if you don’t get an answer keep trying.
 
Though there does not seem to be the same level of need and immediacy in Alabama, we will keep you posted if the situation changes.
 
The AAMR Board of Directors has also decided that all Power of One donations this year (2005) will be contributed to these relief efforts, so if you want to make a contribution directly to AAMR, you can be assured that the Board will direct those contributions to the areas we are suggesting. You can send your contribution to AAMR Katrina Relief Power of One Campaign, 444 North Capitol St, NW Suite 846, Washington, DC 20001-1512 or make a credit card contribution by clicking here.
 
Another avenue for contributions is through the Pyramid Training Center run by Ursula and DJ Markey.  Their Center served over 300 families with children with disabilities.  Some of the families escaped from New Orleans, but not all.  Those who could not leave have no services.  To help these families, Rud and Ann Turnbull have helped Ursula and DJ to set up the Pyramid Parent Recovery Trust Fund.  Checks can be sent to Ann and Rud Turnbull made out to the Pyramid Parents Trust Fund.  Ann and Rud are acting as trustees. Their address is:  Rud and Ann Turnbull, Trustees, Beach Center on Disability 3111 Haworth Hall, The University of Kansas, 1200 Sunnyside Drive, Lawrence, KS 66045-7534. 
 
There are other websites that have been set up to assist people with disabilities in need.  TheArcLink.org has set up a web site to match providers from around the country with needy providers in Louisiana in needs of alternative housing.  The Arc of the United States has offered to serve as a conduit for donations to the Arc chapters urgently in need of our support. They will be accepting donations through their web site at www.thearc.org (click the red "Donate Now" button, fill out the requested information and be sure to select "The Arc's Katrina Relief Fund" under the "My gift is in support of" section) and through regular mail sent to The Arc of the United States, ATTN: The Arc's Katrina Relief Fund, 1010 Wayne Avenue, Suite 650, Silver Spring, MD 20910.
 
There are also federal websites that can be helpful to those caught up in this desperate situation.  The federal emergency interagency team is trying to answer how the federal government will make Medicaid eligible to the thousands and thousands of newly poor people.  Information will be available on http://www.ssa.gov/emergency/  for beneficiaries who were victims of Katrina. Social Security says if you can not get to a temporary post office and if you can not access your direct deposit funds, any Social Security office can provide a check.
 
Accessible housing is NOT AVAILABLE.  Rental housing has been taken by people who got out fast and by contractors.  www.hurricanehousing.org  offers a site where people can donate housing and where hurricane victims can find free housing. civil.liberties@DHS.gov is the disability office at the Department of Homeland Security where further information may be available and where conference calls are being coordinated. 
 
The Centers for Medicare and Medicaid Services has created a Katrina web page. You can access it by going to:http://www.cms.hhs.gov/katrina/. Posted on this page are various informational items that agency officials have developed to date to explain the special policies that apply to Medicare and Medicaid-eligible hurricane victims. Here you will find, among other documents: (a) the special waiver that HHS Sec. Michael Leavitt signed on Friday, granting states enhanced latitude in responding to the care and treatment needs of hurricane victims who are eligible for Medicaid or Medicare benefits: and (b) a list of frequently asked questions and answers concerning the application of the waiver to Medicaid beneficiaries. The web page also contains useful links to other sources of information concerning disaster relief efforts in the wake of the devastating storm. They have been of great help in giving us advice on how to channel the desires of people around the country to be helpful. 
 
Finally, there is a comprehensive website that tracks the needs of people with a range of disabilities.   http://www.katrinadisability.info/
 
As I mentioned, we will try and keep the members updated as new information becomes available.  Please do what you can as quickly as you can.  AAMR members can make a unique contribution to people with disabilities, their families, and to the colleagues that make up our professional family.  
 
Thanks for whatever you can do.  If you have any questions, please email me at
vbradley@hsri.org.
                           
Valerie Bradley
President
AAMR
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Bulletin from the Interagency Coordinating Council on Emergency Preparedness and Individuals with Disabilities
 
Bulletin: Saturday, September 10, 2005