ADD Update 

June/July 2006 

Commissioners Message 

Last fall, in the months following hurricanes Katrina and Rita, the 
DD Network response was overwhelming. Grantees in the 
affected regions worked around the clock to meet the needs of 
individuals with disabilities and their families. Grantees from 
across the Nation sent resources, money, and staff to assist their 
colleagues on the Gulf Coast. 

Its hurricane season again. As our colleagues on the Gulf Coast 
continue to help families repair their lives and brace for the 
possibility of another storm, newspapers across the country are 
peppered with headlines warning of other potential dangers 
ranging from avian flu to terrorism threats. It is essential, then, 
that we as a Network work together to take the steps that will 
allow us to respond to an emergency not with panic, but with 
confidence and compassion. We must prepare for these potential 
disasters not out of fear or pessimism, but out of a desire that our 
collective reaction to unforeseen or unfortunate events will be both purposeful and effective. 

Many lessons were learned in the months following Hurricanes Katrina and Rita. Perhaps most 
important among these lessons is that it is absolutely essential that we as a community of disability 
advocates form relationship with Federal, State, local and private emergency management 
stakeholders. In the event of an emergency, it is crucial that we communicate effectively and work 
smoothly with public and private emergency response teams. This collaboration should not be put 
off until a disaster is upon us. It must begin now. 

This issue of the ADD Update focuses on Emergency Management. In it, I hope to outline steps 
that can be taken to improve planning, communication, and preparation. More than that, I hope to 
encourage an ongoing conversation between grantees, as well as among grantees and Federal, State, 
and local stakeholders. As part of the effort to facilitate that conversation, ADD and HHS, together 
with the Department of Homeland Security, were proud to sponsor the Working Conference on 
Emergency Management and Individuals with Disabilities and the Elderly on June 28-30 in 
Washington, DC. All States and the District of Columbia were invited to designate individuals 

11Commissioners Message 
44Spotlight on Self Advocacy 
55A Different Road to Self 
Advocacy 
66Collaboration in Georgia 
77Independent Evaluation Update 
1100Program Progress 
1111Program Performance 
1122Announcements and Updates 
1133Emergency Preparedness Tips 
1166ADDed Resources 

from Departments, Offices or Task Forces related to Aging, Health, Homeland Security, Emergency 
Management, and Special Needs Populations to represent them at the conference. Additionally, an 
ADD Grantee representative was part of each of these delegations. 

The conference addressed three phases of 
emergency management: planning, response, and 
recovery. Attendees heard from experts and 
participated in workgroups. I was overwhelmed 
by the hard work and dedication of the speakers, 
delegates, and attendees. 

At the conference, many important subjects were 
broached, new relationships were formed, and 
ideas were discussed. Perhaps most importantly, 
the foundation was laid to enable members of the 
disability and emergency management 
communities to work together. 

I am confident in the ability of ADDs grantees to 
build on this foundation, and to create practical 
plans and solutions that will allow the needs of 
Americans with disabilities to be met in the event 
of a disaster. 

I hope that in continuing to work together, 
conference delegates and other stakeholders will 
keep in mind three important concepts that 
emerged at the conference: 

1. 
People with experience working with the 
disability and aging communities must be 
involved in all phases of emergency 
management: planning, response, and 
recovery. Members of these communities 
themselves should be involved as well, and 
must have defined roles in shaping 
solutions. 
2. 
Individuals and organizations involved in 
emergency management planning have to 
get to know one another. The time to build 
solid relationships with other organizations 
is before the waters start to rise. By 
Topics of the Emergency Management 
Conference included: 
.Day 1: Estimating populations and the 
viability of registries. 
.Day 2: Accessible transportation and 
communication. 
.Day 3: Coordination and restoration of 
services. 
The goals of the conference for State 
delegations were to: 
.Connect representatives from homeland 
security, emergency management, special 
needs, aging and disability with each 
other, 
.Have an opportunity to work together 
and lay out how to strengthen the 
capacity of their State to assist target 
populations in an emergency or disaster, 
.Take their consensus-based ideas back to 
their Governors, and 
.Work together for the adoption and 
implementation of these ideas statewide. 
The goals for Federal agencies and national 
organizations: 
Just as State delegations and Regional Groups 
will be working through how to address specific 
topics, meetings of federal and national groups 
each afternoon will allow us to work through 
how we will facilitate these activities by working 
together at the national level. 
For more information and resources from the 
conference, please visit:http://add-em-conf.com 
starting now to get to know other organizations, we can become familiar with each others 
operations, and discover ways that our services and planning techniques can complement 
each other. 

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3. 
Resource mapping is crucial. Everyone should spend time on documenting the availability 
and location of the resources that will be needed in the event of a disaster- supplies, 
vehicles, housing. During Hurricane Katrina, there were hundreds of accessible buses 
located within a few hundred miles of the disaster area that went unused because responders 
didnt know where they were or how to get permission to use them. In order to have access 
to the resources needed in a disaster, we must know where those resources are and how to 
quickly access them when they are needed. 
These steps, and the many other steps necessary to implement appropriate and effective emergency 
response plans, do not have to be the responsibility of any one agency. Only by working together 
and sharing resources, skills, and ideas can we ensure that the needs of all Americans will be met. 

At the conference, I was unable due to time constraints to thank the many individuals and 
organizations who made the event a success, and who are already working hard to improve 
emergency management initiatives. In addition to the Department of Health and Human Services 
and the Department of Homeland Security, the conference was made possible by the Administration 
on Aging, the Office on Disability, the Family and Youth Services Bureau, the Childrens Bureau, 
the Substance Abuse and Mental Health Services Administration, and the Social Security 
Administration. I owe a great deal of thanks to Daniel Sutherland of the U.S. Department of 
Homeland Security, who served as co-coordinator for this event. Among the many other 
individuals to whom I am thankful are Secretary Michael Chertoff, Deputy Secretary Alex Azar, 
David Paulison, Dr. Wade Horn, Dr. Margaret Gianinni, Josephina Carbonell, Robert Zitz, 
Elizabeth Davis, Jim Mason, Joe Forsha, and Joanne Barnes. I am also grateful to the many others 
whose participation made this conference possible. I look forward to continued cooperation as we 
work together on this important issue. 

Editors Note: Pages 13-15 of this issue of the ADD Update contain a detachable emergency 

preparedness checklist specifically designed for individuals with disabilities. Links to 

additional resources can be found on the last two pages. 

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Spotlight on Self Advocacy 
Finding a Voice 

For Mia Peterson, being a self-advocate has always been 
about finding her voice. 

Mia is a member of the Board of Directors of the National 
Down Syndrome Society, where she acts as chairperson of 
the Self-Advocacy Advisory Board and edits a regular 
bulletin. Shes also a full-time employee of the Iowa 
Protection and Advocacy System, and she writes the 
internal newsletter there as well. 

As a writer and self-advocate, Mia is living happily in her home State and has found a forum in 
which to voice her beliefs and opinions, but her journey towards that point began almost ten years 
ago, when she was still in high school. 

One of Mias hobbies has always been writing stories. As a senior in high school, Mia attended a 
National Down Syndrome conference with her father. She had the opportunity to share her fiction 
with representatives of the Down Syndrome Congress, who then asked to publish some of her 
stories in a new newsletter. Shortly thereafter, Mia was asked to be co-editor of the newsletter. 

When the founder of a Cincinnati, Ohio-based business called Capabilities Unlimited read Mias 
stories, Mia was offered a job writing for a newsletter by and for people with disabilities. She was 
able to work from home in Iowa for a while, and then she was offered a part-time position in Ohio. 

I was nervous, but I decided to take that risk, says Mia of the move. My family supported me, 
because they wanted me to have this chance to live my own life. Im glad that they did. It was worth 
the risk. That was the beginning of my self-determination. 

In Ohio, Mia wrote for the newsletter, and helped other self-advocates get training. People need to 
speak for themselves, not let other people speak for them, she says. 

The move to Ohio was a positive, life-changing experience for Mia, but it came with challenges as 
well. When I moved, I had to learn a lot of things, she says. I had to learn how to do things on 
my own, how to work in an office, how to find my own voice, how to give others a voice by 
advocacy training. 

The challenges and the risk were definitely worth it, says Mia. Now living in Iowa again, she has 
been working for the P&A for seven months. She loves her job, and loves working with people. In 
her spare time, she enjoys swimming, running, walking with friends, and bike riding with her 
family. She continues to be active in self-advocacy and looks forward to whatever experiences and 
challenges are next. 

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What Did You Do Before This?: A Different Road to 
Self-Advocacy 
By Kathy Cargill-Willis, ADD Program Specialist 

During my first couple of weeks at ADD, a colleague (I love that word because in one word it 
conveys professional equality and team membership) asked me, What did you do before this? It 
wasnt a question to challenge my credentials; she was just curious. But the answer is complicated 
for me, and I suspect it is complicated for many people with disabilities. It took me several decades 
to realize that my qualifications, abilities, and disabilities were not likely going to fit a job position 
found in the classified pages in your average Sunday paper. But I have experience-- professional 
experience and experience worthy of compensation. 

I also realized early that research and the written word were going to my best friends. Now, with the 
Internet, research is so easy and so, dare I say, accessible. After twenty years of gathering research 
for political candidates, I discovered that if you go in to a meeting or an interview armed with paper 
and an attitude of look what I can do for you, or you need me to do this for you, instead of 
trying to fit into a job description, you will be more successful. This especially worked in the world 
of politics and academia where hiring practices are looser. This attitude generally reaped a job or a 
contract eventually, and although I was not selected for the position advertised, sometimes the 
conditions of the contract were more lucrative and gave me more worthy experience. 

In the three years before joining ADD, I accomplished three things, things that are very significant 
to my career. I held a contract with the Ohio Developmental Disabilities Council digesting lengthy 
reports from federal agencies and experts in the disability arena. This job allowed me to become 
very familiar with the priorities and current trends in the disability field, giving me the ability to 
access reliable scholars in the field, such as David Braddock or Charlie Lakin. Secondly, I 
published my first novel, which was very exciting. Dreaming A Life is a fictional comparison of 
the life of a twin with significant disabilities and her able-bodied sister. The book is available at my 
local bookstore in Ohio and on Amazon.com. The third opportunity came as I described above. I 
interviewed for a position at a small health education company. Although I was not selected for the 
position, the company wanted me to develop three modules on disability issues. Since I already had 
the research at my fingertips, the whole project took me much less time than the company expected; 
therefore, when dividing my compensation by the hour the rate of pay was significantly higher than 
the original position for which I applied. 

As I write this article, I have been at ADD for almost two months. It has been exciting, 
exhilarating, and exhausting. Did you know that after you walk from the metro to the front door of 
the HHS building, you walk another block to my office inside the building? And people ask me if I 
want to go outside for lunch, two blocks here and two blocks there? Last Friday we had a fire drill 
or a fire incident, I am not sure which. There was not a clear procedure for me to exit the building: 
do I wait for someone to have time to pick me up in the elevator, or do I take the stairs and possibly 
get knocked over or impede others exiting? Another incident happened late Friday afternoon when 
my supervisor came into my office and said that she needed me and two other colleagues to copy, 

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collate and make 30 packets for a meeting Monday. I looked at her and said, You really dont want 
me to do that, but I would be happy to do labels or the agenda. It would take me forever to collate 
and I would wrinkle everything. She said, Oh I forgot, which I took as a compliment. Like any 
other team, my colleagues and I need to discover our individual strengths, abilities and weaknesses. 
When working with people with disabilities the process may take a little longer. 

The point of this article is that the experience of people with disabilities may be different and may 
be acquired differently, but it may be no less creditable. Even if a self-advocate does not have thirty 
years, or even one year as a civil servant, his or her experience may be very strong and comparable 
to the professional! 

Collaboration in Georgia: Childrens Freedom Initiative 
Don Faulk loves country music, fireworks, go-cart rides, and veggie tales videos. As of 2005, 
however, Don had been living in an institution for six years-- half of his young life. Fireworks and 
go-carts, along with other favorite family activities, were only available on Dons occasional visits 
home. Music and videos were played in his room in a nursing home where most of the other 
residents were senior citizens. Don loved being outside, but did not often get the opportunity to go 
out. He spent his days lying in bed, or occasionally sitting in a chair in the nursing home hallway. 

Dons mother wanted to bring him home. However, she couldnt afford the services that Don 
would need. The State would pay for Dons nursing home care, but not for the supports that would 
allow him to receive the care he needed to live his life at home with his family. 

ADD and its grantees are dedicated to the principle that children like Don should never have to 
spend their lives confined in institutions. In Georgia, where Don lives, the three grantees joined 
forces to create the Childrens Freedom Initiative. This initiative was formed to make sure that in 
the future no child in Georgia will have to live in an institution. 

The mission of the initiative is centered on the belief that children like Don belong with loving 
families  not in facilities. Currently, it is estimated that 140  150 of Georgias children are living 
in nursing homes and state hospitals. The DD Network is taking steps to change that. 

As part of the Childrens Freedom Initiative, the DD Network worked cooperatively to bring 
together a diverse group of stakeholders at a summit to ensure that children who live in facilities 
are given the chance to live with permanent, loving families and to imagine a future where no 
child will live in an institution. In order to add value to the summit, the DD Network hired 
national consultants who have successfully moved children into permanent homes in other states. 
The summit clarified and reinforced the following messages: 


Children need and deserve permanent homes and communities; 


Serving children (and other persons) with disabilities in the community is much more 

cost-effective than serving them in institutions; and 

 
Every child can live in the community with the correct support system in place. 

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During the 2005 legislative session of the General Assembly, House Resolution 633 was introduced 
to look into this issue. This resolution resulted in the creation of an oversight committee. The non-
legislative members of the committee are persons with disabilities, family members, and 
representatives from the DD Network. 

In conjunction with this project, the P&A and the Council jointly funded "Longing For Home", the 
powerful video/DVD about the initiative. In addition, UCEDD-affiliated graduate student Katie 
Bailey interviewed 6 families whose children were or are now institutionalized in Georgia and 
wrote stories for a publication called From Loving Arms. UCEDD staff disseminated over 1000 
copies of this publication. A picture of Don Faulk was featured on the cover. 
In August 2005, at the Childrens Freedom Initiative Summit in The purpose of this 
Atlanta, Dons mother held a copy of From Loving Arms over her update is to provide 
head and tearfully asked, Why cant I bring my son home? current information 

about progress on theDuring the most recent session of the Georgia legislature, funds Independent Evaluationwere approved so that all of the children in Georgia's state-and current activities 
administered institutions can go home. Next year, the DD Network being implemented. Thiswill work with the legislature to tackle the issue of children in will be a regular featureprivate facilities & nursing homes. of the ADD Update to 

ensure that you are 
With the help of the Childrens Freedom Initiative and the P&As knowledgeable about 
advocacy efforts, Don at last went home to live with his family in the Independent 
February 2006. He has a swing in his backyard, and is receiving Evaluation processes 
good support from his school. and activities. 
Hes so happy, says Dons mother Laurie. Hes always giggling and trying to talk. Six years 
lying in bed and now hes just happy. 

ADD Independent Evaluation Update 
Westat has been hard at work and making progress on the ADD Independent Evaluation project. As 
we reported in the March ADD Update, Westat established working groups for each of the ADD 
grant programs (DD Councils, P&As, and UCEDDs), which are comprised of Executive or 
Associate Directors of the respective programs and a DD Council Chair. More recently, a 
collaboration working group was established by drawing from the three program workgroups. 
Below is a listing of the members of each working group: 

P&A Working Group 

Mary Faithfull, Texas 
Sarah Wiggins-Mitchell, New Jersey 
Robert Joondeph, Oregon 
Timothy Shaw, Nebraska 
Jeanne Thobro, Wyoming 
Tom Gallagher, Indiana 

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DD Council Working Group 

Jamie Wolfe, Delaware 
Debra Dowds, Florida 
Vendella Collins, Michigan 
Becky Maddy Harker, Iowa 
Richard Weathermon, Nevada 
Waynette Cabral, Hawaii 
Bill Lynch, Oregon 

UCEDD Working Group 

Lucille Zeph, Maine 
Tawara Goode, Washington, DC 
Fred Orelove, Virginia 
Fred Palmer, Tennessee 
David Mank, Indiana 
Carl Calkins, Missouri 
Gloria Krahn, Oregon 

Collaboration Working Group 

Fred Orlove (UCEDD), Virginia 
Jeanne Thobro (P&A), Wyoming 
Becky Maddy Harker (DD Council), Iowa 
Robert Joondeph (P&A), Oregon 
Bill Lynch (DD Council), Oregon 
Gloria Krahn (UCEDD), Oregon 

These working groups represent a range of program characteristics, including the geographic 
location, size, funding levels, and administrative home for the program. 

The purpose of these working groups is to help Westat develop DRAFT performance standards for 
each program and for collaboration across the DD Network grantees. Evaluation in its most basic 
form is a simple comparison of what is to an expectation of what should be. The standard is 
what should be, and through the examination of new or existing data on what is, the evaluation 
process will determine the extent to which the program meets each standard for each program 
function. The working groups are helping to develop standards that will be designed around the 
characteristics of effective DD Network programs and collaboration among the three programs. 

DRAFT performance standards are being developed for each programs key functions as well as 
the key functions for Network collaboration. Although each of the three DD Network programs has 
the same long-term goals that emanate from the DD Act, each program functions differently to 
achieve those goals. 

Currently, the working groups are hard at work assisting Westat in characterizing the key functions 
of each DD Network program. This process has included a series of meetings of each working 
group organized by Westat. All working groups have had one in-person meeting as well as several 

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conference calls. Members of the working groups have also conducted work off-line. 

The meetings of the working groups have consisted of discussions of key concepts and issues, 
including the following: 

 
What are the key functions of the P&A/UCEDD/DD Council? 

 
What are the goals of each key function? 

 
What are the characteristics of a successful P&A/UCEDD/DD Council? 

 
What are the characteristics of successful collaboration? 

 
By what standards does the P&A/UCEDD/DD Council measure its own success? 

 
How does one characterize and identify the impact of each DD Network program on: 

 
The ability of individuals with developmental disabilities to make choices and exert 
control over the services, supports, and assistance they use; 

 
The ability of individuals with developmental disabilities to access services, supports, 
and assistance in a manner that ensures that such an individual is free from abuse, 
neglect, sexual and financial exploitation, violation of legal and human rights, and the 
inappropriate use of restraints and seclusion; and 

 
The extent to which DD Network programs collaborate with each other to achieve the 
purpose and principles of the DD Act? 

Future discussions will address data requirements and measurement tools necessary to measure the 
indicators that are developed as well as discussions of existing data that can be used for this 
evaluation. 

Westat hopes to complete discussions with the working groups by the end of August, 2006. Once 
this work is complete, Westat will organize the DRAFT performance standards for each key 
function into evaluation tools called measurement matrices. These DRAFT measurement matrices 
will be presented to Validation Panels. 

Westat will establish four Validation Panels. The role of the Validation Panels is to review and 
comment on the contents of the DRAFT measurement matrices in order to achieve consensus on the 
matrices before they go forward for pilot testing. Panels will be comprised of DD network program 
staff and DD Council members, ADD staff, and others with expertise in issues facing the 
developmental disabilities community (e.g., self-advocates, family members, advocates) and 
evaluation research background. It is intended that the Validation Panels will be established in the 
summer of 2006 and will begin meeting in late summer or early fall. 

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As you can tell from this update, much has been accomplished over the past few months and there is 
much more work to be done in the coming months. ADD will continue to keep you informed on the 
Independent Evaluation project through the ADD Update. In the meantime, if you have questions 
about the activities being carried out through this project, please contact Jennifer Johnson at 202690-
5982 or jennifer.johnson@acf.hhs.gov. 

Program Progress 
Connecticut DD Network 

The Connecticut DD Network has developed a Guide for Including People with Disabilities in 
Disaster Preparedness Planning. This guide, written for municipal and regional planners, reflects 
information, concerns and recommendations that emerged at the day long forum on December 6, 
2005 on "Lessons Learned" from recent large scale disasters that affected states along the Gulf 
Coast. While the guide is intended to facilitate planning at the regional and local levels, it also 
contains information that will be useful to individuals with disabilities and their families, and 
identifies some critical issues that need further development at the systems level in Connecticut. 
The goal of the guide is to provide for people with disabilities at the same level of safety afforded to 
all, and to have people with disabilities involved in the process to plan, advocate, and take charge 
for themselves. ADD is pleased to offer a copy of this excellent tool to all attendees at the Working 
Conference on Emergency Management and Individuals with Disabilities and the Elderly on June 
28-30 in Washington, DC. Additionally, the full text of the document is available at 
http://www.ct.gov/opapd/cwp/view.asp?Q=316886&A=1782. 

Minnesota UCEDD 

The National Association of State Directors of Developmental Disabilities Services (NASDDDS), 
in conjunction with the Research and Training Center/Institute on Community Integration at the 
University of Minnesota, is developing an emergency preparedness self-assessment instrument for 
state developmental disabilities agencies. The new self-assessment tool is being constructed to assist 
member state agency officials evaluate the extent to which their existing preparedness plans are able 
to address the unique characteristics of individuals receiving support through publicly funded 
developmental disabilities programs. 

Katrina Aid Today 

Katrina Aid Today is a national case management consortium of nine nonprofit partners, led by 
United Methodist Committee on Relief. One of the participating partners is the National Disability 
Rights Network, through which many P&As are participating in the relief effort. The program is 
facilitated by the Federal Emergency Management Agency of the Department of Homeland 
Security. 

Under Katrina Aid Today, the Mission of NDRN is to provide high quality, cost-effective nationwide 
case management services for displaced individuals with disabilities and their families. 
Designed to support displaced individuals with disabilities and their families in regaining self-

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sufficiency while building cohesive and inclusive communities, the Protection and Advocacy 
Network is: 

 
identifying individuals with disabilities and their families in this population and establishing 

mechanisms for them to contact P&A agencies; 
 
taking referrals of complex disability cases from other Consortium partners; 
 
assisting individuals and their families to develop individual recovery plans; 
 
supporting the implementation of these recovery plans by navigating through complex 

delivery systems related to disability and other human and social services, supports and 
accommodations; and 
 
Connecting these individuals with additional resources through the Consortium, as well as 
legal or other advocacy services in the community if necessary. 

In order to meet the goals and objectives of KAT, NDRN created a two-tier system. 
Tier I consists of nine, primary P&As in the states with the highest numbers of individuals affected 
by Hurricane Katrina  Louisiana, Texas, Mississippi, Alabama, Georgia, Florida, Tennessee, 
Illinois and Arkansas. 


Tier II consists of low-incidence P&As standing ready to assist identified evacuees. They are 
Colorado, Indiana, Michigan, Missouri, New Jersey, New York, North Carolina, Ohio and 
Pennsylvania. 


Program Performance 
DDC and PADD Annual Reports: 
In May 2006, ADD completed the process of reviewing and approving the DDC FY 2005, PADD 
FY2005 PPR, and PADD FY 2006 SGP reports. Currently, ADD and its Contractor are compiling 
and and analyzing the data. Once ready, these national aggregate data will be used in the annual 
GPRA report, the FY 2008 Budget Requests and the data tables will be published on the ADDs 
Web site. 

Five Year State Plan Reports: 

In May 2006, the blank Five Year State Plan form was deployed on the ACF Online Data 
Collection (OLDC) platform. With this form on OLDC, ADD has all DDC and PADD reports 
available on OLDC. 
DD Councils will be submitting their new five-year state plans (effective FY 2007-2012) on the 
OLDC for ADD review and approval on/by the due date --Aug 15, 2006. 

Contact Syed Rafiuddin @ srafiuddin@acf.hhs.gov for any technical issues and questions. 

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Announcements and Updates 
Councils Technical Assistance Institute 

The Councils Technical Assistance Institute, Bolder Voices: Building Leaders and Telling Our 
Stories, was held on June 5th and 6th in Baltimore, MD. The conference focused on finding new 
ways to tell the Councils stories and effectively communicate their messages. Neil Romano, who 
is considered among the nations leading authorities in the field of media and public advocacy, 
served as the keynote speaker. In 2003, Mr. Romano founded Americas Strength Foundation, a 
private organization designed to help people with disabilities find main-stream employment. In 
addition, Mr. Romano owns The Romano Group, a multi-media production and consulting firm. In 
addition to his keynote address, Mr. Romano served as the lead speaker for two breakout sessions, 
and educated conference attendees on subjects such as shaping messages and handling public 
relations. Other sessions focused on data collection and other communication-related issues. 

The P&A/CAP TASC Annual Conference for 2006 

The Annual Conference for the Protection and Advocacy (P&A) systems and Client Assistance 
Programs (CAPs, for employment) was held June 13-16. It was sponsored by various federal 
programs, including the Administration on Developmental Disabilities (ADD), and was 
administered by the federally funded Training and Advocacy Support Center (TASC), a division of 
the National Disability Rights Network (NDRN). This conference covered a lot of topics and 
generated a lot of excitement. 

The first day of the conference was focused on Training Institutes, which provided opportunities for 
specialized training in areas critical to P&A effectiveness. These included Secondary 
Investigations, non-litigation strategies for preserving Medicaid, communication strategies. 

The plenary in the morning of the second day featured Eric Treat, a self-advocate, as the master of 
ceremonies, with panelists discussing How Consumer Advocates Can Make a Difference, and the 
plenary in the morning of the third day focused on Employment as Community Integration. 

The main body of the conference, beginning on the second day, comprised seven training tracks, 
which were each focused on topics such as Community Living, Advocacy Strategies, Promoting 
Employment, Childrens Issues, and Juvenile Justice issues. There were also, of course, tracks on 
Complex Legal Issues and on Abuse and Neglect issues. Self Advocates were highly visible at this 
conference, leading workshops such as developing voting materials for people with limited literacy 
and effective communications with individuals who are Deaf. There was also a workshop on 
working with the Hispanic and Latino communities, to help P&As improve their outreach. Helping 
people with disabilities to successfully participate in the voting process was well covered in this 
conference, including a review of the Rules Governing Election Advocacy and Election Protection 
Efforts. There was also a focus on the use of jails and prisons as a substitute for institutions, and the 
terrible abuses that occur in those settings 

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Emergency Preparedness Tips 
The recent tragedies along the Gulf Coast highlighted the need to adequately prepare to meet the 
needs of Americans with disabilities during and after future emergencies. Moving forward, ADDs 
focus is not only on response to these hurricanes, but on ensuring that the lessons learned on the 
Gulf Coast this year will improve the services provided to Americans with disabilities in the event 
of future disasters. 

After the hurricanes, ADD circulated an email to all grantees containing several tools that we hope 
will be helpful in developing emergency plans that address the unique needs of individuals with 
disabilities. 

Attached to this email, grantees received the following documents: 


Disaster Preparedness for People with Special Needs and Persons Age 65 and Older 

Working Together When the Worst Happens: Nonprofit Emergency Preparedness in the 

National Capital Region 

 
FEMA: A Guide to the Disaster Declaration Process and Federal Disaster Assistance 

 
Disaster Solutions (compiled from various documents, including reports from ADDs 

grantees 

If youd like a copy of the Disaster Solutions document, please contact Rebekah Yeager at 
ryeager@acf.hhs.gov. The other three documents, as well as other resources, can be found on 
ADDs website at http://www.acf.hhs.gov/programs/add/resources/hurricanekatrina.html. 
Additional links are provided in the last section of this newsletter. 

The following checklist, compiled from FEMA and Red Cross recommendations, can be helpful in 
formulating disaster readiness plans for people with disabilities: 

Emergency Preparedness for Individuals with Disabilities 

Personal Support Network: A personal support network is made up of individuals who will check 
with you in an emergency to ensure you are O.K. and to give assistance if needed. Identify a 
minimum of three people at each location. Do not depend on any one person.

Make arrangements, prior to an emergency, for your support network to immediately check on 
you (e.g., after a quake) and, if needed, offer assistance. 
Exchange important keys.
Show where you keep emergency supplies.
Share copies of your relevant emergency documents, evacuation plans, and emergency health 
information card.
Agree and practice a communications system regarding how to contact each other in an 
emergency. Do not count on the telephone working.



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The American Dream Belongs to Everyone Page 13 of 17 


You and your personal support network should always notify each other to help each other in an 
emergency. 

Emergency Contact List 


Ask several relatives or friends who live outside the immediate area (approx. 100 miles away) to 
act as a clearinghouse for information about you and your family (e.g., after a quake). It is often 
easier to place an out of state long distance call from a disaster area, then to call within the area. 
All family members should know to call the contact person to report their location and 
condition. Once contact is made, have the contact person relay messages to your other friends 
and relatives outside the disaster area. 
Besides emergency out-of-town contacts, the list should include emergency response agencies, 
personal support network, equipment vendors, doctors, utility companies, employers, schools, 
and day care center information for all household members. Post list by telephones. 
Medications 


Work with your doctor to obtain an extra supply of medication, as well as extra copies of 
prescriptions. Make several copies of your prescriptions and put one copy in each of your 
survival kits, car kit, wallet, with your emergency documents and your evacuation plan. 
Ask your doctor if it would be safe to go without one dosage periodically, until an adequate 
supply has been accumulated. 
Ask your provider or pharmacist about the shelf life and storage temperature sensitivities of 
your medication. Ask how often you should rotate stored medication to ensure that the 
effectiveness of the medication does not weaken due to excess storage time. 
If you are on medications which are administered to you by a clinic or hospital (such as 
methadone, or chemo or radiation therapy) ask your provider how you should plan for a 3-14 
day disruption. 

Equipment and Assistive Devices 


Keep equipment and assistive devices in a consistent, convenient and secured place, so you can 
quickly and easily locate them during an emergency. 
Keep back-up equipment such as a spare battery or manual wheelchair.


Carry-On/Carry-With-You Supplies: 

Supplies to keep with you at all times. 


Emergency Health Information Card that contains information about medications, equipment 
used, allergies and sensitivities, communication difficulties, preferred treatment, treatment-
medical providers, and important contact people. 
Instructions on personal assistance needs and how best to provide them.
Copy of emergency documents.
Essential medications/copies of prescriptions (at least a weeks supply)
Flashlight on key ring.


ADD Program Update. 
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The American Dream Belongs to Everyone Page 14 of 17 


Signaling device (whistle, beeper, bell, screecher)
Small battery operated radio and extra batteries


Supplies to Add to Emergency Kit: 

Store in areas you anticipate will be easy to reach. If you have to leave something behind, make 
sure you get these.

 
Food and water for 3 days (one gallon per person per day), blankets, non-electric can opener. 
Disability-related supplies for up to two weeks. (If unable to afford extra supplies consider 
contacting disability-specific organizations such as the Multiple Sclerosis Society, Arthritis 
Foundation. 
Life in cramped, unheated shelters can increase the chances of pneumonia and colds. Equip 
your kits with any vitamins or medications you take to guard against getting sick and to cope 
with being sick. 

Communication: Practice Assertiveness Skills 


Take charge and practice how to quickly explain to people how to move your mobility aids or 
how to move you safely and rapidly. Be prepared to give clear, specific and concise instructions 
and directions to rescue personnel, i.e., take my oxygen tank, take my insulin from the 
refrigerator, take my communication device from under the bed. Practice giving these 
instructions with the least amount of words in the least amount of time. 
Be prepared to request an accommodation from disaster personnel. For example, if you are 
unable to wait in long lines for extended periods of time, practice clearly and concisely 
explaining why you cannot wait in line. 
Conduct a Self-Assessment: 

Evaluate your capabilities, limitations and needs, as well as your surroundings to determine what 
type of help you will need in an emergency. 

Have you designated a room in your home for shelter in case of a chemical or biological attack, 
and have on hand a roll of duct tape, scissors, and plastic to cover windows and vents in the 
room?
Will you be able to shut off utilities (gas, water, electricity)?
Can you operate a fire extinguisher? Will extended handles make this item available to you? 
Will you be able to carry your evacuation kit? Do you have duplicates at other sites?
How will you evacuate? Move or secure large objects that might block your escape path. 
Write instructions for the following (keep a copy with you and share with support network)
. How to turn off utilities
. How to operate and safely move essential equipment
. How to safely transport you if need to be carried, and include any areas of vulnerability
. List personal care assistance needs (dressing, bathing etc.) with instructions on how best to 
  assist you. 
. Make a map of where to find medications, aids and supplies. 



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U.S. Department of Health and Human Services . Administration for Children and Families 

The American Dream Belongs to Everyone Page 15 of 17 


ADDed Resources 
Emergency Preparedness is an ongoing process. Please check ADDs website frequently for 
updated links. www.acf.hhs.gov/programs/add. 

Department of Homeland Security 

 
Disability Preparedness Resource Center: http://www.disabilitypreparedness.gov/ 

 
Interagency Coordinating Council on Emergency Preparedness and Individuals with 
Disabilities (ICC) 

 
ICC Website 

http://www.dhs.gov/dhspublic/interapp/editorial/editorial_0591.xml 

 
2005 Annual Report 

http://www.dhs.gov/interweb/assetlibrary/
CRCL_IWDEP_AnnualReport_2005.pdf


 
FEMA Disability Preparedness Information 

http://www.disabilitypreparedness.gov/ 

National Council on Disability 

 
Saving Lives: Including People with Disabilities in Emergency Planning 

http://www.ncd.gov/newsroom/publications/2005/saving_lives.htm 

Department of Justice 

 
An ADA Guide for Local Governments: Making Community Emergency Preparedness and 
Response Programs Accessible to People with Disabilities 

http://www.usdoj.gov/crt/ada/emergencyprep.htm 

 
A Report on Special Needs Issues, Efforts and Lessons Learned 

http://www.eadassociates.com/resources.html#gpub 

Emergency Preparedness Initiative of the National Organization on Disability 

 
Emergency Preparedness Initiative Guide for Emergency Managers, Planners and 
Responders


http://www.nod.org/index.cfm?fuseaction=page.viewPage&
pageID=1430&nodeID=1&FeatureID=1034&redirected=1&
CFID=6648848&CFTOKEN=70639594


 
Report on Special Needs Assessment for Katrina Evacuees (SNAKE) Project 

http://www.nod.org/index.cfm?fuseaction=page.viewPage&
pageID=1430&nodeID=1&FeatureID=1588&redirected=1&
CFID=6648848&CFTOKEN=70639594


ADD Program Update. 
U.S. Department of Health and Human Services . Administration for Children and Families 

The American Dream Belongs to Everyone 
Page 16 of 17 


Send Us 
Your 
Stories 
The next 
ADD 
New York City Regional Office of Mental Retardation and Developmental Disabilities 

 
911 Experience 

http://www.eadassociates.com/resources.html#gpub 

IAEM Bulletins featuring Special Needs articles 

 
http://www.eadassociates.com/resources.html#gpub 

The California State Independent Living Center 

 
The Impact of 2003 Wildfires on People with Disabilities, April 1, 2004 

http://www.eadassociates.com/resources.html#gpub 

Homeland Protection Professional  Special Needs Related Articles 

 
Special People, Special Care, March 2006, by Lisa Gibney, Robyn Reese, Ned Wright 

http://add-em-conf.com/confdocs/special_people_special_care.pdf 

 
Are We Prepared for the Cost of Preparedness, April 2006, by Elizabeth Davis 

http://add-em-conf.com/confdocs/Prepared_for_the_cost_of_preparedness.pdf 

 
Special Products Section, April 2006 

http://add-em-conf.com/confdocs/Spec_Prod_Section.pdf 

AARP 

 
We Can Do Better: Lessons Learned for Protecting Older Persons in Disasters (Summary) 

http://add-em-conf.com/confdocs/AARP_summary-doing_better


seniors_and_disasters_2006.pdf 

 
We Can Do Better: Lessons Learned for Protecting Older Persons in Disasters (Full 
Report) 

http://add-em-conf.com/confdocs/AARP_full_report-doing_better


seniors_and_disasters_2006.pdf 

Tips For First Responders In Assisting Persons With Disability: 

http://cdd.unm.edu/products/tips_web020205.pdf 

We Want to Hear From You: 
The next issue of the ADD Update will focus on cultural competence. Please send any 
suggestions, information, stories, and photographs to ryeager@acf.hhs.gov. 
ADD Program Update 
 
U.S. Department of Health and Human Services . Administration for Children and Families 

The American Dream Belongs to Everyone 
Page 17 of 17