JFActivist

President Obama's Disability Shout-Out at Lincoln Memorial

From President Obama's Address at the Lincoln Memorial for the opening concert for the 2009 Presidential Inauguration (Jan. 18, 2009):

... And yet, as I stand here today, what gives me the greatest hope of all is not the stone and marble that surrounds us today, but what fills the spaces in between. It is you -- Americans of every race and region and station who came here because you believe in what this country can be and because you want to help us get there.

It is the same thing that gave me hope from the day we began this campaign for the presidency nearly two years ago; a belief that if we could just recognize ourselves in one another and bring everyone together -- Democrats, Republicans, independents; Latino, Asian and Native American; black and white, gay and straight, disabled and not -- then not only would we restore hope and opportunity in places that yearned for both, but maybe, just maybe, we might perfect our union in the process...

>>> For the Entire Speech

Inaugural Disability Events Held Nationwide

Nationwide Inaugural Disability Events Update

We are almost to the inauguration! Please see below a list of disability inaugural events to be held around the country, along with some materials for people holding events and ideas for what you can do.

 

Thanks to all those who are organizing events or who have helped put together this nationwide effort.

 

Please check the information below about your event and email me immediately (or call 510-427-7535) to give corrections or additions. We are still looking for details about Long Beach and Marin County, plus a location for Portland.

 

Things to keep in mind for your local event:

* Please take photos or videotape your event, and send it to disabilitymovement@gmail.com. We'll make sure to distribute all the information so that we can see what went on around the country and show how large and diverse the disability community is.

* You might make a large poster and/or photo of the group at your event, something to send to the President and Congress to show them people with disabilities are mobilized and ready for change.

* Collect email addresses at your event and send them on to us to be added to the Justice for All listserv, to help connect people with disabilities all over the country.

* Feel free to call Jessica (510-427-7535) anytime over the weekend for more ideas, materials, or questions .

 

Resources Available:

1) A list of events being held around the country

    * Please publicize widely!

 

2) A sample press release to use for your local event OR for folks to use to get national press

    * Please add your own contact information, make any changes you'd like - make it your own!

  

 

3) The Transition Letter sent by a group of national disability consumer-controlled organizations, along with a series of policy statements

    * Feel free to use these at your local events to discuss why these issues are important to your community and talk about how folks are affected personally, and what you all want to do about it

 

4) A variation on the transition letter - a sample that you can use at your local event! Ask people to sign it, talk about it, and send it to the President, the Vice-President, and the leadership of the House & Senate

 

Thanks again for all your work! Have a fabulous time with your event!

 

Jessica Lehman

 

------------------------------------------------------------

 

Disability Inaugural Events

 

1) Portland, Oregon

People First: A Disability Networking and Resource Event

When: Thursday, January 22, 5-7 pm

This event follows the meeting of the new Commission on Disabilities and will include time to mingle and sign letters or postcards to Obama about what is important to them. The mayor and Commissioners Fitz and Fish have been invited.

Contact: Nickole Cheron, Disability Program Coordinator

Phone: 503-823-2036

Email: Nickole.Cheron@ci.portland.or.us

 

2) Marin County, California

For details contact disabilitymovement@gmail.com.

 

3) Oakland, California

Disability Inaugural Event

When: Wednesday, January 21, 4-7 pm

Where: Fruitvale / San Antonio Senior Center, 3301 East 12th Street, Oakland, right at the Fruitvale BART station Join us to raise your voice and put disability issues on the agenda for the new president! Enjoy food, drinks, and good company.

Sponsored by: Community Resources for Independent Living, Center for Independent Living, World Institute on Disability, Disability Rights Education & Defense Fund, and National Multiple Sclerosis Society

Contact: Jessica Lehman, 510-881-5743, jessica.lehman@cril-online.org

 

4) Long Beach, California

CA Workforce Investment Act Conference for Youth "Youth Advocacy in the "AGE OF OBAMA"

When: Tuesday, January 20, 2009, 9:00 - 11:00AM For details contact disabilitymovement@gmail.com.

 

5) Austin, Texas

Barack Obama Inauguration Viewing

Join the ADAPT of Texas activists, who will be drinking coffee, eating bagels and cream cheese, while celebrating the historic inauguration of Senator Barack Obama as President of the United States.

When: Tues, Jan 20th - 9am

Where:  ADAPT Office - 1640A East 2nd St  Suite 100 Please let us know you are coming so we have enough bagels.

(Even better bring something to share)

RSVP - 512/442-0252

 

6) Columbia, Missouri

"Speak Up, Speak Out!" Legislative Training Learn how a bill becomes a law and how to contact your legislator!

When: Friday, January 30, 1:00 – 4:00 pm

Where: Columbia Public Library, 100 West Broadway, Columbia MO 65205 RSVP by January 25th to Mark Ohrenberg, Services for Independent Living

Phone: 573-874-1646 ext. 216

Email: mohrenberg@silcolumbia.org

 

7) Warwick, Rhode Island

Join the RI Disability Vote Project to watch Barack Obama's inauguration Brown bag (bring your own) lunch. Drinks and cookies will be provided.

When: Tuesday, January 20, 2009, 11:30-2:00 pm

Where: Warwick Public Library, 600 Sandy Lane, Warwick, RI RSVP to Jean Lawlor at (401) 295-5757 x15 or ridvp@ridvp.org

 

8) Angola, New York (Western New York)

Community Access Action Planning

Self Advocacy AmeriCorps members and volunteers will work with people with developmental disabilities and staff of Claddagh Day Hab in Angola, NY to brainstorm solutions to the barriers that they face in gaining access to their community and develop action plans to address those barriers.

When: Monday, January 19 from 11:00 AM - 1:00 PM

Where: Claddagh Day Hab, 8484 Erie Rd, Angola, NY 14006

Contact: Sophia Roberts, western@sanys.org

Phone:716- 517-2342

 

9) Amherst, New York (Western New York)

On behalf of People Inc.'s United Voices for Change- the advocates will be showing Obama's presidential speech. We ask anyone attending to bring a non-perishable food item. We will make a donation to the WNY Food Bank and an in-house food pantry.

When: January 20, 2009, 1:00 pm

Where: 3131 Sheridan Drive, in Amherst

Contact: Cheryl Creekmore, Chairperson of United Voices for Change

Email: advocacy@people-inc.org

 

10) Washington, DC

Inauguration Viewing and Potluck Dinner, Roundtable to discuss issues and concerns of the disability community, and Martin Luther King Jr.

Event

 

View inauguration and parade

When: January 20, 11 am – 8 pm

Where: 1338 North Capitol Street NW, Suite 101 Potluck, snacks, coffee, and water Sponsored by CAN/Consumer Action Network and Ida Mae Campbell Wellness and Resource Center

Contact: (202) 684-7015

 

First Annual Round Table Discussion

Sponsored by CAN/Consumer Action Network and Ida Mae Campbell Wellness and Resource Center

When: January 22, 6-8 pm

Where: 1338 North Capitol Street NW, Suite 101 Dinner will be provided Please RSVP by January 20 to Iden McCollum at idenmccollum@gmail.com or call (202) 684-7015

 

Reenactment of MLK's famous speech "I Have a Dream"

Come prepared to laugh, cry and be happy.  We are going into a wonderful new opportunity with President elect Obama and we have the chance to voice our opinions and share our concerns with his cabinet, so let's be heard.  This event is sponsored by the Consumer Action Network/CAN and the Ida Mae Campbell Wellness & Resource Center.

When: January 21, 2009, 5:00pm-7:00pm

Where: 1338 North Capitol Street NW Suite 101

Contact: 202-684-7015

Sponsored by Ida Mae Campbell Wellness and Resource Center

 

11) Richmond, Virginia

Inaugural event

The Coalition for Virginians with Mental Disabilities is hosting a rally in Richmond for Virginians with Mental Disabilities including intellectual disabilities, mental health issues, and substance abuse issues. We are gathering at St. Paul's Church next to Capitol Square at 10:00 am. The Rally will include speeches, briefings, and distribution of materials. After the Rally is over, at 11:00, we will walk in a group to the General Assembly Building to meet with our legislators.

When: Monday, January 19, 10 am

Contact: Bonnie Neighbour, Advocacy Coordinator, VOCAL Network

Phone: 1-877-VOCLNET toll-free, 314-809-2317 cell

Email: bonnie@vocalvirginia.org

 

12) Raleigh, North Carolina

Fundraiser and Inaugural Celebration

When: Saturday, January 17

Where: Unitarian United Fellowship of Raleigh For details, contact Cynthia Vester, Executive Director, NC-CANSO, North Carolina – Consumer Advocacy, Networking and Support Organization www.nc-canso.org

Phone: (919) 327-1500, x503

Email: cynthia@nc-canso.org

 

13) Atlanta, Georgia

Viewing and discussion about disability policy and healthcare issues

When: Tuesday, January 20, 2009, 10-1

Where: Shepherd Center, http://www.shepherd.org/about/location.asp

Contact: Mark Johnson, Director of Advocacy, Shepherd Center, 404-350-7490

 

 

EVENTS HELD PREVIOUSLY

 

1) Macomb County, Michigan

Health Care Community Discussion

Sponsored by Disability Network Oakland & Macomb Held on December 17th, 2008, at Disability Network Oakland & Macomb For more info, contact Dorie Bawks, Advocacy Specialist

Phone: 586-268-4160

Email: dbawks@dnom.org

Special Olympic Torch in the Inaugural Parade

From the Epoch Times (Jan. 15, 2009):

Special Olympics Torch Makes NYC Visit

By Christine Lin

NEW YORK—In less than one week, law enforcement officials and Special Olympics athletes will carry the Special Olympics torch down the streets of Washington, D.C. following Barack Obama's inauguration. The Washington, D.C. stop will be one of three U.S. cities to welcome the torch this year preceding the Winter Games in Boise, Idaho.

For the New York leg of the trip, ten New York-based athletes from Team USA and hundreds of law enforcement professionals ran the torch down snowy streets on Thursday from City Hall to the World Financial Center.

Special Olympian Peter Dailey was one of the athletes who participated in the run. An ice skater from Rochester, Dailey said he “enjoyed” running in the snow very much. Dailey, 23, has won several gold medals since he began competing in the Special Olympics in 2001.

Throughout its journey across 10 countries, DHL courier transported the flame. Following Washington, D.C., the torch will be transported to Los Angeles. Already it has traveled 37,000 miles, with nearly 4,000 more to go...

>>>For the Entire Article

Disability Community to Host Its First-Ever Inaugural Ball

FOR IMMEDIATE RELEASE

Contact:
Karen Lee
For the Disability Power & Pride Inaugural Ball
Office: 202.973.3606
Cell: 703.966.1282

Disability Community to Host Its First-Ever Inaugural Ball
Advocacy and Civil Rights Groups Come Together to Celebrate New Administration’s Commitment to Breaking Down Barriers

Washington, DC, January 15, 2009 – A coalition of leading national disability advocacy groups has united to host the first-ever Disability Power & Pride Inaugural Ball held on Sunday, January 18, 2009 at the National Press Club. Setting aside individual agendas, the disability community celebrates this historic presidency and the promise of the new Administration to reduce stigma and maximize opportunities for all Americans to participate fully in our nation’s democracy.

In recognition of our nation’s brave military, many of whom experienced significant injuries resulting in disability, Ball organizers are sponsoring a number of combat veterans from Walter Reed Medical Center as honored guests.

“There are more than 54 million Americans with disabilities, but we have been largely absent from politics,” said former Congressman Tony Coelho, chairman of the Ball Planning Committee and author of the Americans with Disabilities Act (ADA).  “With this event, we say, ‘no more.’ Just like any other civil rights group, we are proud of our ability to organize, fundraise, participate in this wonderful society, and above all – celebrate the hope that President-elect Barack Obama brings to our country.”

This fully-accessible Inaugural Ball is hosted by a cadre of leading disability advocacy groups, including the American Association of People with Disabilities, National Coalition for Disability Rights, National Council on Independent Living, United Cerebral Palsy, the AbilityOne Program, and many others.

“The enactment of the ADA gave people with disabilities important legal rights, but that was just the beginning,” added Coelho. “As our strength becomes more widely recognized – both in size and purchasing power – we can begin to accomplish great things, legislatively and otherwise.”
 
Disability Power & Pride Inaugural Ball Details:

When:        Sunday, January 18, 2009, 7pm to 12am

Where:        National Press Club, 529 14th Street NW, 13th Floor, Washington, DC

Tickets:     Complimentary for media, but RSVP required

Attire:        Black tie optional

RSVP:        Kendra Kojcsich, 202.973.2919, Kendra.kojcsich@porternovelli.com

Information:    Sign language interpreters, CART, audio description and assistive listening devices will be available. Internet access for media available.
www.disabilitypowerandpride.org

Comment Below:  An excellent step toward developing a sense of unity in the disability community. Share reactions to the ball.  If you attend, please share how it goes.  Share other ideas for furthering cross-disability collaboration.  

Smithsonian Hosts Inaugural Series with Signed and Captioned Events

SIGNED AND CAPTIONED INAGURATION EVENTS AT THE
SMITHSONIAN INSTITUTION

Giving Voice to Hope

Overview: Storytelling performances by Onawumi and Mitch Capel address the journeys African Americans have taken to full participation in this democracy, toward full citizenship and civil rights, and the meaning of hope in this historic moment.  Organized by Folklife and the National Museum of African American History and Culture.  ASL Interpretation will be provided.

Dates/Times/Locations: Sunday, January 18th and Monday, January 19th, Smithsonian Castle, 2:00 pm to 3:30 pm

Inaugural Debate Series
Overview: On the 100th anniversary of the first debates between Historically Black Colleges and Universities, NMAAHC will host six college debate teams from across the country to discuss the priorities of the new Obama administration - Energy and Climate Change, Health Care and the Economy, and Foreign Policy. Teams participating in the debate include Michigan State University, Wake Forest University, University of Mary Washington, University of Southern California, Fayetteville State University, and Voorhees College. Sponsored by the National Museum of African American History and Culture, in association with the White House Initiative on Historically Black Colleges and Universities.  ASL interpretation will be provided.

Dates/Times/Locations: Monday, January 19th, Baird Auditorium, NMNH, 9:00 am to 4:00 pm

   

Out of Many: A Multicultural Festival of Music, Dance and  Story
Overview: In honor of the inauguration of President-elect Barack             Obama, the Smithsonian’s National Museum of the American Indian             will host “Out of Many: A Multicultural Festival of Music, Dance and             Story” from Saturday, Jan.17 through Monday, Jan. 19, 2009. The             three-day program will feature daily performances of live music,             dancing and storytelling at various museum locations from a variety of cultural traditions, including American Indian, African and African American, Asian and Asian Pacific American, Central and South American and European American. All performances are free and open to the public.  Select program are scheduled to be captioned             and interpreted, to check the schedule of events for more detail visit             www.americanindian.si.edu, to request additional access services             email access@si.edu or call Krista at 202-633-4340.

Dates/Time/Location:  From Saturday January 17 – Monday January             19, for additional details go to www.americanindian.si.edu

The Smithsonian Associates presents: Presidential Films  (all films will be open captioned)

JFK
Overview: Starring: Kevin Costner, Tommy Lee Jones, Kevin Bacon                Directed By: Oliver Stone

New Orleans District Attorney Jim Garrison is highly suspicious of the             official story presented by the FBI to explain JFK's assassination.             When he takes it upon himself to investigate, he unearths a deadly             conspiracy.

Dates/Times/location: Sunday, January 18, 2009 /S. Dillon Ripley             Center Lecture Hall / Show Time: 10:00 am (189 minutes)

The American President                                                    
Overview: Starring: Michael Douglas, Annette Benning, Richard Dreyfuss Directed By: Rob Reiner

Widowed US president Andrew Shephard falls in love with lobbyist             Sydney Helen Wade. His relationship with Wade opens the door for             his prime political opponent, Senator Bob Rumson, to launch an attack on the President's character threatening his all but certain re-election.

Date/Time/Location: Sunday, January 18, 2009 /S. Dillon Ripley Center Lecture Hall / Show Time: 1:30pm (114 minutes)

Dr. Strangelove                                                                          
Overview: Starring: Peter Sellars, George C. Scott     Directed By:             Stanley Kubrick

At the height of the Cold War, Air Force General Jack D. Ripper is             convinced of a Communist plot to conquer the Free World. Will the             bombers be stopped in time, or will General Jack Ripper succeed in             destroying the World?

Date/Time/Location: Sunday, January 18, 2009 /S. Dillon Ripley Center Lecture Hall / Show Time: 4pm (93 minutes)

Mr. Smith Goes to Washington                                       
Overview: Starring: James Stewart     Directed By: Frank Capra
Naive and idealistic Jefferson Smith, leader of the Boy Rangers,             discovers many of the shortcomings of the political process as his             earnest goal of a National Boys' Camp leads to a conflict with the             state political boss.

Date/Time/Location: Monday, January 19, 2009/ s. Dillon Ripley             Center/ShowTime: 10am (129 minutes)

   

All the President’s Men                                                       
Overview: Starring: Dustin Hoffman, Robert Redford   Directed By:             Alan Pakula

Enactment of the work of Bob Woodward and Carl Bernstein who uncovered the dirty tricks campaign and the cover-up of the White House's involvement in the Watergate break in.

Date/Time/Location: Monday, January 19, 2009/ S. Dillon Ripley Center /Show Time: 1pm (138 minutes)

   

My Fellow Americans                                                        
Overview:  Starring: Jack Lemmon, James Garner, Dan Aykroyd                 Directed By: Peter Segal

Kramer and Douglas, two former presidents from opposite ends of             the political spectrum, become reluctant allies when they become             the target of a conspirator in President Haney's administration.

Date/Time/Location: Monday, January 19, 2009/ S. Dillon Ripley enter Show Time: 4pm (101 minutes)

Call to Unify: Inaugural Disability Events Around the Country

Status Update from AAPD and our Consumer Controlled Coalition

We have been working on coordinating disability inaugural events around the country, to mobilize the disability community and build the groundswell we need to have people with disabilities heard in the new administration. I'm writing to give a progress report and ask your help.

>>> For our original release

Events planned so far:

1) Portland, Oregon: "People First: A Disability Networking and Resource Event," Thursday, January 22, 5-7 pm

2) Marin County, California

3) Oakland, California: Disability Inaugural Event, Wednesday, January 21, 4-7 pm

4) Columbia, Missouri: "Speak Up, Speak Out!" Legislative Training, Friday, January 30

5) Washington, DC: Potluck Dinner, Roundtable to discuss issues and concerns of the disability community

6) Raleigh, North Carolina: Fundraiser and Inaugural Celebration, Saturday, January 17

Possible Events in:

Chicago, Illinois and Macomb County, Michigan

Next Steps:

* We'd like to get more events planned around the country! Can you think about contacts you have in key areas around the country? Please email us with names that you have - we can do the work of contacting them if necessary, but we need your contacts!

Some areas that might be useful: Maryland (district of House Majority Leader Steny Hoyer), Ohio (House Republican Leader John Boehner), Nevada (Senate Majority Leader Harry Reid)...

* Some of you may be hosting small inauguration parties at your homes, inviting other people with disabilities to watch with you - please let us know so we can include these on the list of nationwide events!

* We will turn the disability policy paper into a letter that every gathering around the country can have attendees sign and send in - potentially to the Pres & VP, plus House & Senate leadership. Let us know if you want to help with this.

* A sample press release will go out by Wednesday or Thursday.

Thanks for all your help on this. With our work, we hope to use the excitement around Obama's inauguration to bring out more of our community and prepare for strong and effective action over the next four years and beyond.

 For more information, to request materials, or to report an event you have organized

Email disabilitymovement@gmail.com or call Jessica Lehman at (510) 427-7535 or Rebecca (Hare) Cokley at (202) 420-1847

Disability Groups Send Recommendations to Obama

December 22, 2008

 

President-Elect Barack Obama

Presidential Transition Team

Washington DC

 

Dear President-Elect Obama:

 

I write on behalf of a coalition of national consumer-led disability organizations to share some of our collective policy priorities for your new Administration.  Many disability organizations have been and will be sharing more specific recommendations that reflect their organizational priorities, but we wanted to work together on a joint document to highlight the areas that are of common interest and concern.  The process that led to the development of this document began with an advanced leadership forum in October in Boston (organized by the Boston Center for Independent Living) that brought together disability leaders from around the country to explore together how to strengthen our movement and cultivate new leaders.  The individuals who participated in that Fred Fay Advanced Leadership Forum then reached out to the leaders of national disability consumer organizations, and we decided collectively to work on this joint letter.

 

We stand committed to working with your Administration and an even larger coalition of disability and civil rights organizations to move forward on our common policy agenda.  As you work to fine-tune and implement your Plan to Empower Americans with Disabilities, we urge you to do so in partnership with organizations that are run by people with disabilities and that have strong grassroots constituencies like the groups that have come together to produce this letter.   In our experience, disability policy and public policy more generally works better when it comes from the constituencies that are its intended beneficiaries.

 

Thank you for your leadership on disability issues, and thank you for the opportunity to share our agenda as we enter into a period of extraordinary opportunities and challenges.

 

Sincerely,

 

Andrew J. Imparato

President and CEO

American Association of People with Disabilities

Dear President-elect Obama,

Congratulations on capturing the hearts, minds, and hopes of our nation! As grassroots, community-based, consumer-controlled disability organizations, which collectively represent over 50 million Americans with the full spectrum of disabilities, we look forward to working with you and your administration to make cost-effective policy changes to enhance the lives of and restore the civil liberties Americans with disabilities. 

 

Attached you will find nine summaries of the top policy issues facing Americans with disabilities. Taking action on your commitment and these policy measures will not only benefit citizens with disabilities, our nation’s wounded warriors, and the ever-growing aging population, it will benefit all Americans and save our government millions of dollars as individuals with disabilities become full participants in society.  

 

They include:

·         Employment: Reversing the persistently high percentages of people with disabilities who are not working but are ready, willing and able to work;

·         Education: Increasing access and opportunities for physical activity, and improving quality;

·         Health Care: Improving access and decreasing disparities and inequities;

·         Home and Community-based Services (HCBS): Promoting effective community-based services as alternatives to costly nursing homes and other institutions and increase the FMAP to states;

·         Disability Research: Promoting a quality of life and participation-based research agenda;

·         Civil Rights: Reinvigorating civil rights enforcement, extending access requirements to new technologies, and continuing to restore protections stripped away by hostile courts;

·         Human Rights: Protecting human rights of individuals with disabilities at home and abroad;

·         Emergency Preparedness, Response and Recovery Needs: Planning, coordinating, and providing resources to support people with disabilities before, during, and after a crisis; and

·         Genetic Science and Technology: Promoting ethical use of new technologies.

Like you, we stand and sit on the shoulders of so many who have come before us. As our nation approaches the 20^th anniversary of the Americans with Disabilities Act in 2010, we embrace the disability rights principle, “Nothing About Us, Without Us.” For too long others claimed the need to speak for us, but no other group -  professionals or relatives - speak for us.

Additionally, we urge you to embrace the fundamental principles for sustainable change, which are essential elements to building healthy, resilient, empowered communities.  As you move forward with deliberate speed and consideration, we urge your administration to:

·         Provide oversight of federal agency public policy, regulatory, and enforcement actions, and collaborate with consumer and community-based disability organizations as partners to better serve the ever-expanding population of more than 50 million Americans with disabilities;

·         Hire qualified professionals with disabilities, who have expertise in policy areas, throughout the administration, including a Special Assistant to the President on Disability Policy;

·         Include individuals with disabilities in policy formation in all areas addressed by the administration, and integrate representatives of our community on all advisory boards of all major agencies;

·         Provide services that serve people with disabilities across the life span, from cradle to grave, and all those with increased needs for health care, health promotion, and long-term services and community-based supports;

·         Incorporate consumer-directed services and include consumers in policy development;

·         Embrace the disability experience as part of culturally competent policy and diversity at all levels of planning, policy formulation, implementation, and evaluation; and

·         Focus on “universal design” as a cost-effective innovative way to enhance the quality of life and level of participation of all Americans in community life and incorporate it into infrastructure changes in the economic stimulus package so we upgrade the infrastructure for all to use; 

 

Thank you for your support of the need for the federal government to be “diligent about making sure the states enforce the rights affirmed by the Olmstead decision.” Enabling people with disabilities to live independently in their own homes and communities, rather than being forced into costly Medicaid-funded nursing homes and other institutions will ensure civil liberties, enhance the quality of life and full participation of all Americans by creating stronger, sustainable communities of inclusion and acceptance to honor the 10^th Anniversary of the Olmstead decision.

As a community of individuals with disabilities, we ask for nothing more than what other Americans expect and already have. We seek inclusion. We seek a voice for the disability rights message in the change you create. As you create more jobs for Americans, include jobs for Americans with disabilities. As you improve education for America’s students, include students with disabilities. As you improve the healthcare system, include the healthcare needs of individuals with disabilities. As you restore civil rights to Americans, include the civil rights of individuals with disabilities. To paraphrase your now immortal words, - We are not a nation of disabled and non-disabled Americans. We are the United States of America.

We stand ready to work with you and look forward to an opportunity to discuss our priorities with you personally in the coming months.

 

Sincerely,

American Association of People with Disabilities (AAPD)

Access Living

American Disabled for Attendant Programs Today (ADAPT)

Autistic Self Advocacy Network

Boston Center for Independent Living (BCIL)

California Foundation for Independent Living Centers (CFILC)

Disability Rights Education and Defense Fund (DREDF)

Generations Ahead

Little People of America

Metro-West Center for Independent Living (MWCIL)

National Association of the Deaf (NAD)

National Coalition for Disability Rights (NCDR)

National Coalition of Mental Health Consumer Survivor Organizations

National Council on Independent Living (NCIL)

National Empowerment Center

National Federation of the Blind (NFB)

Self Advocates Becoming Empowered (SABE)

Special Olympics

Texas State Independent Living Council (TX SILC)

World Institute on Disability (WID)

Attachments

For Policy Recommendations on each policy issue click links above

Disability Groups Send Transition Team Genetic Science and Technology Policy Recommendations

From Transition Letter Attachment Sent by AAPD and a Coalition of Consumer Controlled Organizations (12/22/08):

Genetic Science and Technology

 

Background:

 

·         Society is rapidly increasing its use of genetic technologies, including prenatal genetic testing and screening, trait selection, stem cell therapy, and personalized medicine. Individuals increasingly face complex decisions about how to use genetic technologies.

·         The general public’s understanding of what it means to have a disability or raise a child with a disability is limited. Physicians, genetic counselors, personalized genomics companies, friends, family, and the media may offer limited information which often provides a medical prognosis without the context of life experiences of people with disabilities.

·         Income, geography, and language often limit access to genetic technologies, leading to disparities in the use of genetic testing, therapies, and other treatments.

·         Genetic technology policy discussions often assume the need to prevent or cure disability without contextualizing the issue in a broader discussion of funding priorities for supports and services.

Long Term Goals:

 

·         Convene a national summit to develop a consensus protocol for assessing the impact of genetic technology policy on people with disabilities, considering the impact - not simply the intent - of policy, practice, and regulation and include leaders of the disability community.

·         Assure all administration policies affirm the rights and values of people with disabilities, support the autonomy of women and families, and promote an ongoing dialogue.

Short Term Goals:

 

·         Hire and appoint people with disabilities who have worked with prominent consumer-controlled disability organizations and have expertise in genetic and related ethical issues, to the Office of Science and Technology Policy and the President’s Council on Bioethics.

·         Ensure active participation of people with disabilities as leaders in the debates surrounding genetic technologies, challenging assumptions about the need to prevent, cure, or eliminate disability by appointing them to decision-making agency and interagency bodies.

·         Seek appropriate funding to implement the Prenatally and Postnatally Diagnosed Conditions Awareness Act, with leadership from national consumer-controlled disability organizations to gather information about living with intellectual, developmental, physical, visual, auditory, sensory, and mental health disabilities, and distribute in accessible formats and multiple languages.

·         Implement the Genetic Information Nondiscrimination Act (GINA) with leadership from consumer-controlled disability organizations that have expertise in living with genetic conditions.

·         Ensure that all genetic research goes forward with a proper understanding of the ethical issues involved and sufficient support to positively affect the quality of life of people with disabilities.

·         Fund research to explore the social and demographic consequences of genetic testing and selective abortion/implantation on disability populations and the general population.

Disability Groups Send Transition Team Emergency Preparedness Recommendations

From Transition Letter Attachment Sent by AAPD and a Coalition of Consumer Controlled Organizations (12/22/08):

Emergency Preparedness, Response and Recovery Needs 

 

Background:

 

·         Up to 1/3 of individuals affected by emergencies or disasters, have functional needs related to disability and/or chronic conditions that affect their safety, health and independence.

 

·         Policies, practices and programs of local, state and federal agencies charged with emergency management fail to adequately address the needs of individuals with disabilities. 

 

·         During emergencies and disasters, human and civil rights violations are rampant, despite simple and readily achievable solutions to protect lives and maximize limited resources.

 

·         Agencies charged with emergency management often underutilize experts in emergency management needs of people with disabilities, and often exclude them from planning and response at all levels.

 

·         The Robert T. Stafford Disaster Relief and Emergency Assistance Act (Stafford Act) fails to adequately address proper disaster management needs and results in misuse of limited resources.

 

·         Studies show every dollar spent in preparedness saves nine dollars in response and recovery for the general population and significantly more for preparedness needs of individuals with disabilities.

 

Long Term Goals:

 

·         Establish a mandate for the interagency coordinating council to incorporate expertise available outside the federal government into its decision.

 

·         Appoint a coordinator with expertise in the needs of people with disabilities to all federal agencies with specific emergency preparedness responsibilities, and the authority and resources to act on them.

 

·         Provide adequate resources and authority to FEMA, the National Council on Disability, the HHS Office on Disability, and the Domestic Policy Council to design, implement, and coordinate policy and practice initiatives across agencies to improve outcomes for individuals with disabilities.

 

·         Mandate that emergency management agencies at every level engage disability community experts to help address the needs of people with disabilities before, during and after disasters.

 

Short Term Goals:

 

·         Ensure the National Security review team assesses FEMA’s progress in fulfilling the directives in the 2006 Stafford Act amendment as outlined by the ten statutory charges for the Disability Coordinator.

 

·         Establish an Office on Disability in FEMA with adequate authority and resources for the Disability Coordinator to fulfill the expectations of this position. 

 

·         Include expertise in emergency preparedness, response and recovery of people with disabilities on the Domestic Policy Council team and all other areas throughout the administration charged with emergency preparedness.

 

·         Change the composition and authority of the Interagency Coordinating Council formed under Executive Order 13347 to include private sector experts at the table.

 

·         Ensure that people with disabilities have equal access to necessary services and supports to maintain health and independence during, and after emergencies, disasters, and/or crises.

Disability Groups Send Transition Team Human Rights Recommendations

From Transition Letter Attachment Sent by AAPD and a Coalition of Consumer Controlled Organizations (12/22/08):

Promote Human Rights

Background:

 

·         The United Nations adopted The United Nations Convention on the Rights of Peoples with Disabilities (CRPD) on December 13, 2006. Forty-two nations ratified the CRPD and a total of 136 nations have signed it, indicating their intent to ratify. 

 

·         During the campaign, President-elect Obama indicated that the administration would support US ratification.

 

·         The CRPD will promote, protect, and ensure the full and equal enjoyment of all human rights by persons with disabilities.

 

·         It addresses the rights of people with disabilities to self-determination, physical and programmatic access, personal mobility, health, education, employment, habilitation and rehabilitation, participation in political life, and equality and non-discrimination. 

 

·         When the US ratifies the CRPD, it will underline its recognition of and commitment to enforce human rights and equality for people with disabilities.

 

·         Americans with disabilities still face barriers to these rights, including the right to community living outside of institutions, guaranteed by the United States Supreme Court in Olmstead.   

 

·         Enabling people with disabilities to live independently in their homes and communities, rather than in costly Medicaid-funded nursing homes and mental institutions will not only save millions of dollars, but also will enhance the quality of life for millions of Americans.

 

·         Young people need more supports to promote the transition from school to independent living and work to enhance quality of life and decrease the alarming number of unemployed individuals with disabilities.

 

·         Individuals with disabilities are subjected to hate crimes, but specific data is limited.

 

Long Term Goals:

 

·         Promote and protect human rights of individuals with disabilities at home and abroad.

 

·         Promote policies that emphasize the transition from school to independent living and work.

 

Short Term Goals:

 

·         Sign the UN Convention on the Rights of Peoples with Disabilities and work with Congress to ratify it.

 

·         Work with the States to make sure they enforce the right to community living outside of institutions, as mandated by the United States Supreme Court in Olmstead, and with Congress to provide the States with the tools they need to enforce it.

 

·         Require law enforcement agencies currently required to keep surveillance data on hate crimes to collect specific data on the disabilities of hate crime victims and provide technical assistance to the public and law enforcement agencies to encourage reporting.