JFActivist

AAPD Annual Gala Selling out Fast

From AAPD (2.28.11):

 

AAPD 2011 Gala Tickets are Going Fast

Designed by fashion designer Norma Kamali and honoring disability leadership including the Cast and and Creative Team behind the Fox Television Show, "Glee," the 2011 Gala tickets are selling like hotcakes. 

Find out more about the 2011 Gala at www.aapd.com

>>> To learn more about the 2011 Gala

>>> To view the official invitation

>>> To purchase tickets

 

Walmart Awards $600,000 to AAPD for Internship Program

From AAPD  (2.15.11):

FOR IMMEDIATE RELEASE                                              

Walmart Awards $600,000 to AAPD for Internship Program

Money to fund leadership opportunities for students with disabilities in the nation’s capital

WASHINGTON, DC – February 15, 2011 – The American Association of People with Disabilities (AAPD) is excited to announce the investment of $600,000 from Walmart, with support from the Walmart Foundation, to support a significant expansion of AAPD’s internship opportunities in public service for students with disabilities.

Working together over the next two years, AAPD and Walmart will build the new AAPD Summer Internship Program with opportunities for undergraduate, graduate and law students with all types of disabilities from all around the country to intern with members of Congress, Congressional Committees, the Executive Branch, federal agencies and offices of government affairs. AAPD and Walmart firmly believe that a key to professional, personal, and academic success for students with disabilities can be the life-changing experience of a Washington, D.C. summer internship. 

AAPD is building on its pilot Congressional and Federal IT internship programs, sponsored by the Mitsubishi Electric America Foundation (MEAF) and Microsoft, respectively, over the past 10 years. 

“Together we have learned the tremendous impact these internship opportunities can have on the lives and futures of young people with disabilities, and AAPD is thrilled to expand these opportunities through our new program and partnership with Walmart,” said Helena Berger, AAPD’s Acting President & CEO.  “Walmart’s grant is the largest single investment in the history of AAPD.”

For 10 years, AAPD has offered Congressional and federal agency summer internships to undergraduate students, placing more than 125 interns with all types of disabilities in Washington internships. This new partnership with Walmart will allow AAPD to grow exponentially its Washington, D.C. Summer Internship Program, hosting 28 interns this summer, and many more in future years. The AAPD internship program will now also be open to college students, law students and other graduate and professional students with disabilities, and will offer a wider group of young leaders with disabilities exposure to careers in public service and government…

>>> For the full release

Will Med Tech Innovations Benefit PWDs?

From AAPD (2.8.11):

From Websites to Biotechnology: Will Med Tech Innovations Benefit People with Disabilities?

By Daniel Dwyer, AAPD Policy Intern

To learn more about innovations in medical technology and how this might affect people with disabilities, AAPD attended a symposium entitled “Medical Innovation at a Crossroads: Choosing the Path Ahead,” hosted by the Council for American Medical Innovation (CAMI) in January, 2011, held in Washington, DC.  The symposium focused on three key components that drive medical innovation and that the organizers assert are essential to any effort to restore U.S. leadership: the federal government, the private sector and research/educational institutions.  While people with disabilities were not specifically mentioned, it is clear that what happens in this area will impact our lives both from the healthcare and employment perspectives. Speakers noted that the healthcare industry is the largest segment of the U.S. economy and how in one recent week, 34,000 new jobs were created in healthcare. 

The speakers included U.S. Chief Technology Officer Aneesh Chopra, and Fareed Zakaria, the Editor-at-Large of Time and host of CNN’s Fareed Zakaria GPS.  There were also panels which included former U.S. House Majority Leader Dick Gephardt (Co-Chair of CAMI), President and CEO of PhRMA John Castellani. Also speaking were USAgainstAlzheimers founder George Vrandenburg and Mike Leavitt, now a Co-Chair of CAMI and former governor of Utah as well as a former Secretary of Health and Human Services. 

Speakers noted that while many in Washington are sounding the alarm about the federal deficit and excessive spending, the participants believe that an infusion of funding from the government is essential to maintaining U.S. competitiveness in medical innovation.  Speakers also noted that while the United States is still the largest economy in the world, it no longer leads the world in medical innovation, as indicated by a shrinking percentage of overall patents filed by the U.S.  In fact, according to the Information Technology and Innovation Foundation, the U.S. ranked dead last in innovation progress over the last decade.  

Federal Role:  Aneesh Chopra explained that the Administration is acting as a “convener,” bringing industry, research institutions and the government together to undertake a collaborative effort to come up with new and innovative ways to administer healthcare and foster the development of medical advances.  One example is a personal health record (PHR) system for veterans via an online Department of Veterans Affairs website. This allows veterans to download their personal health file by clicking on a “blue button.”  Another example are innovation competitions: one run by the Department of Commerce focused on reducing the time it takes for medical and bioscience technologies to go from inception to commercial production. This resulted in a $1 million award to support biotechnology businesses in Akron, OH that will bring in manufacturing jobs to make low-cost medical devices.

Private Sector:  Speakers noted there are just not many businesses that focus on medical innovation.  They said that 75% of every healthcare dollar spent is for chronically ill patients, most of whom have preventable illnesses. They believe that business should help spur innovation to develop ways to prevent and treat these illnesses, freeing up funds to be spent in other areas.  They complained that there is insufficient funding for research and development (R&D) by the federal government and, according to participants of the symposium, the current R&D tax credit should be made permanent.  Speakers asserted that progress in the U.S. to improve healthcare while reducing overall costs can be done by information technology.  One example is a body patch which collects more data than a bulky monitor for a person’s heart rhythm.

Research/Educational Institutions: Speakers noted that research institutions and universities play a crucial role in medical innovation with scientists and researchers from around the world still coming to the U.S. to study and learn.  Increasingly, however, they are returning to their native countries to work professionally and not staying in the U.S. due to economic realities and cultural changes.  Speakers said the U.S. should encourage more American students to study science and try to retain more of the foreign students. One policy change might be to reform the H1B visa program which, they said, prevents talented students from staying here.  The program can also prevent companies from bringing their own foreign employees to the U.S. More funding for the National Institutes of Health (NIH) and Food and Drug Administration (FDA) was also suggested as a way to help the situation.

Conclusion:  This conference’s experts estimate that healthcare will be the primary contributor to rising federal deficits over the next 20 years, with the costs of programs like Medicare and Medicaid consuming funds that could be used for savings elsewhere.  Therefore, they believe investments that promote medical innovation in the public and private sectors are vital to reducing these healthcare costs and they support targeted investments in innovation as an essential part of any economic recovery for the nation.

Comment below:

1. Do you think there is enough medical technology innovation and if not, why do you think that’s so?
2. What sort of things can you see developing with medical and information technology that would benefit you?
3. Do you think the federal government should spend more on medical technology innovation?

 

 

You're Invited: US Paralympic Leadership Conference April 29-May 2

From US Paralympics (2.23.11):

REGISTER NOW!
2011 USOC Paralympic Leadership Conference 

April 29 - May 2
Colorado Springs, Colorado

Join us for the fourth annual USOC Paralympic Leadership Conference and learn alongside other leaders like you, in workshops led by top professionals in the Paralympic movement from across the country.

Blind adventurer Erik Weihenmayer announced as opening keynote speaker!
Erik Weihenmayer, the only blind man in history to climb the Seven Summits, including Mt. Everest, will deliver the opening keynote address at the 4th annual Paralympic Leadership Conference. Weihenmayer's story of conquering the toughest climbs in the world, and in life, will set the tone for this incredible weekend of learning and inspiration...

To learn more about the conference, visit www.usparalympics.org/leadershipconference

DOT Fines Delta $2 Million for Violating Rights of PWD

From the Department of Transportation (2.17.11):

Delta Fined for Violating Rules Protecting Air Travelers with Disabilities

The U.S. Department of Transportation (DOT) today assessed a civil penalty of $2 million against Delta Air Lines for violating rules protecting air travelers with disabilities.

This civil penalty is the largest penalty ever assessed against an airline by the Department of Transportation in a non-safety-related case.

“Ensuring that passengers with disabilities receive fair treatment when they fly is a priority for the Department of Transportation,” said U.S. Transportation Secretary Ray LaHood.  “We take our aviation disability rules seriously and will continue to enforce them vigorously.”

The DOT requires airlines to provide assistance to passengers with disabilities while boarding and deplaning aircraft, including the use of wheelchairs, ramps, mechanical lifts and service personnel where needed.  Carriers also must respond within 30 days to written complaints about their treatment of disabled passengers, and specifically address the issues raised in the complaints.   In addition, airlines must properly code and record their disability-related complaints in connection with required reporting to the Department...

>>> For the Full Release

Sports and Disability: Study of Golfers with Disabilities

From the National Center on Accessibility (2.14.11):

A Study of Participation in the Game of Golf by Persons with Disabilities and Persons Who are Aging

The National Center on Accessibility is conducting a study on golf participation by persons with disabilities or who are aging. The purpose of the study is to determine what factors assist and/or present barriers to participating in the game of golf by persons who have disabilities or persons who are aging with health conditions. We are seeking volunteers to participate in our survey which would require approximately 10-15 minutes to complete via the Internet. Surveys completed online are anonymous and no personal identifying information is gathered or stored.

A number of important events have occurred in recent years such as the invention or improvement of assistive devices for use in golf; development of ADA guidelines for recreation facilities including golf facilities; and an increase in the number of organizations promoting golf for persons with disabilities. While one might assume that factors that promote the pursuit of playing golf have increased and barriers may have decreased, there is a need to determine the level of participation in golf by persons with disabilities, and what helps or hinders one’s interest in pursuing the game.  This research is being conducted by Drs. Sherril York and Kiboum Kim at the National Center on Accessibility at Indiana University, in partnership with the Wadsworth Golf Charities Foundation and the National Alliance for Accessible Golf. The study will be conducted using an on-line survey available via the Internet.

Who will be study participants?
Individuals with disabilities, and person who are aging who have health conditions can take part in the study.

Individuals with disabilities or health conditions must be:

1. At least 18 years of age or older
2. Currently residing in the United States.

What is the project about?
A survey asking a variety of questions related to the past, current and future interest in pursuing the game of golf and barriers to that participation will be available online or in alternate format upon request.
 
The survey takes about 10-15 minutes to complete. There is no cost to participate in this study. If you choose to complete the paper version, prepaid return envelopes will be provided.
 
You can access the survey through this web address: http://ncaonline.org/golfsurvey

Further questions?
If you have any questions or would like to learn more about the project, please contact Sherril York (812) 856-4422 or shyork@indiana.edu

Russian Delegation Confers with AAPD

From AAPD (2.22.11):

AAPD Acting CEO, Helena Berger (lower right), and Senior Director for Government Affairs, Jenifer Simpson (center left), speak with Russian delegates about cross-disability collaboration. 

Disability Delegates from Samara Russia Confer with AAPD

By Jenifer Simpson, AAPD

On February 7, 2011, in a two-hour meeting, Helena Berger, AAPD Acting President and CEO, and Jenifer Simpson, Senior Director for Government Affairs, met with a delegation of ten disability organizational leaders from Samara, a city of over 3  million people on the Volga river and one of the larger, wealthier cities in Russia. The meeting was convened by Legacy International, an NGO focused on building the skills and capacity of non-profit organizations worldwide. The delegation included several executive directors, researchers and education heads from Samara’s charity organizations that provide services and supports to people with disabilities, with many providing services to children with disabilities and their parents. 

Conversation focused on advocacy skills for parents of children and young adults with disabilities, on the civil rights of people with disabilities and the challenges of employment and independent living.  The Russians were particularly interested in how AAPD is a cross-disability organization and the programs on leadership and development of young people with disabilities and disability mentoring. There were also very interested in how AAPD is funded with some conversation focused on the annual AAPD gala, how AAPD works with the private sector to influence company policies internally, and how companies support AAPD. The delegates said they thought AAPD’s approach was “creative and unusual” and said they had elicited many ideas to take back with them. They were interested in building further relationships with AAPD and other disability organizations, particularly on solving common employment issues.

For more on AAPD International Activities, please contact jsimpson@aapd.com

The Budget, Government Shut Down and Social Security Payments

From the JFA Moderator:

The Budget, Government Shut Down and Social Security Payments

On February 14, President Obama and the Administration sent his 2011 proposed budget to Congress.  This budget included numerous initiatives to develop the capacity of people with with disabilities and protect their rights and services.  These initiatives include:

• Increasing funding for education of children with disabilities,
• Supporting Department of Labor Initiatives to increase the employment of PWD, and
• Strengthening Anti-Discrimination Enforcement by the Department of Justice

>>> To Download the 2011 White House Budget Disability Fact Sheet

>>> For More on the Impact of the President's Budget on PWD

However, this budget also includes cuts to funding for accessible housing and funding for voter access has been eliminated.

The US House of Representatives passed a 2011 budget on Saturday, February 19th which opposes the White House proposal.  The congressional budget was passed in the house along strictly partisan lines.  The Republican majority passed a budget which cuts 9% from the Social Security Administration funding, de-funds Health Reform implementation and cut a Special Olympics inclusion and acceptance initiative.

>>> For More on the House Budget

>>> For a SSA worker's reaction to the House Cuts

The Democratic Senate is not expected to pass these cuts, and unless the two sides can come to a compromise by March 4, 2011 a government shut down will occur.

President Obama warned in his February 15th briefing that government shut down could impact Social Security payments, among other things. 

An investigation by PolitiFact inquired about the extent of the impact on a potential government shut down on Social Security benefits reveals that while there is no guarantee that checks will continue to be sent, it is likely that the impact will mostly be felt by new enrollees and others seeking customer services.

>>> For More on the Impact of a Shut Down on Social Security

FEMA Making Emergency Alerts Accessible

From AAPD (2.18.11):

Emergency Issues: FEMA Continues Efforts to Include People with Disabilities

On Friday February 4, 2011, AAPD's Jenifer Simpson attended a briefing and update by the Federal Emergency Management Administration (FEMA) on the Integrated Public Alert and Warning System (IPAWS). The meeting, lead by IPAWS Deputy Director Antwane Johnson, and hosted by Marcie Roth, FEMA’s Disability Coordinator, focused on ways the IPAWS program is accessible and usable for people with disabilities.  They also talked about how to spread the word about the new approach to national emergency alerts. The meeting included representatives from the U.S. Access Board, National Disability Rights Network, National Council on Independent Living, in addition to many federal agency representatives.

IPAWS is the next generation of the Emergency Alert System that most of us know via radio and TV announcements when they say “this is a test of the emergency alert system.”  IPAWS, however, will integrate these TV and radio announcements with messages on cell phones, through Internet services, via weather alert and local systems such as AMBER, electronic road signage and “reverse 911” systems. The aim is to be able to send “one message over more devices to more people for maximum safety” using different technologies. IPAWS will also take in messages from alerting authorities, like local, state, and tribal governments, to authenticate and validate them, and then to properly disseminate them.

To help JFActivst readers visualize the “IPAWS architecture,” there is a drawing at http://www.fema.gov/pdf/emergency/ipaws/architecture_diagram.pdf

Attendees heard about the need for interoperability to ensure that one message can go out beyond traditional TV and radio.  To address this, FEMA formally adopted, in September 2010, the Common Alerting Protocol (CAP) as a technical specification to carry such a single message. Disability advocacy groups, such as AAPD and the organizations in the Coalition of Organizations for Accessible Technology (COAT), had previously recommended use of CAP for such purposes and are happy to see that FEMA requires this for the product vendors and services providers that will connect together as part of IPAWS.

Advocates learned that the next stage in development of the IPAWS system is a test of how well the cell phone networks will connect for such messaging, with a test scheduled in late February 2011. Then there will a major test of the nation-wide national emergency alert system (EAS) in late September 2011. In both tests, advocates would like to hear reports afterwards on how the needs of people with disabilities were addressed. Full implementation of IPAWS is not expected until late in 2012 and even then it may not be complete as a significant effort still is needed to ensure all the devices, services and applications do in fact interoperate with each other to pass along any national emergency information. Of even more critical importance will be the need for advocacy to ensure that the devices that receive such messaging can in fact display them in the formats that we can use.

Disability advocates at the meeting provided resources on how to better provide people with disabilities the emergency information they need.  Additionally, advocates recommended that FEMA and IPAWS work to produce some consumer-friendly materials about the effort and to develop a general public outreach campaign.

What you can do:

1. Learn more about IPAWS on the website at http://www.fema.gov/emergency/ipaws/ or write via Email to info-ipaws@fema.gov
2. Learn more about the current Emergency Alert System (EAS) system at http://www.fcc.gov/pshs/services/eas/
3. Learn  more about the Common Access Protocol (CAP) at http://www.fcc.gov/pshs/docs/csric/CSRIC%205A%20Working%20Group.pdf
4. Stay mindful of local news about efforts that may involve testing of IPAWS and related activities by Emergency Managers and state governors. Ask how the needs of people with disabilities will be included.
5. Contact your federal FEMA regional office to see if they have any materials or information they can share with you and others about the transformation of the nation’s emergency alerting systems to IPAWS.  FEMA Regional contact information is at http://www.fema.gov/about/regions/index.shtm
6. Ask your device manufacturer (cell phone, Iphone, tablet, pod, phone, TV, radio) what they are doing to ensure accessibility of their device so you will receive the emergency information that will become disseminated through the device once IPAWS is established.

Visit AAPD Emergency Information website at http://www.aapd.com/site/c.pvI1IkNWJqE/b.6428389/k.112/Emergency_Resources.htm

Say NO to Institutions: Tell ADD What They Should be Doing for PWD

From JFA Moderator:

Following the Envisioning the Future Summit, Sharon Lewis, Commissioner at the Administration of Developmental Disabilities (ADD), has opened a site for comment with your "vision for the future."  To read her invitation to participate, see below. 

Voice of the R#t@rded has used this platform to argue for maintaining institutions. Don't let them set ADD's agenda.  Numerous comments have been submitted to Preserve Residential Choice saying "ADD should not use its public funds to sponsor programs and promote policies which undermine and eliminate congregate care options (aka institutions), including intermediate care facility programs for persons with mental retardation (ICF/MR)."

Let Sharon Lewis know we do not want institutions.  The deadline is March, 4, 2011.  So Comment TODAY.

Example Comment: "I envision a world where people with disabilities are free to live, work, socialize, learn and pray in their homes and communities.  I want to see a future where people are not forced into institutions in order to receive supports.  The government should ensure that people are free to direct their own lives while receiving the supports they need in order to be productive citizens and community members.  Stop warehousing people with disabilities."

Please add your own priorities -

End the waitlists

Fully fund IDEA so that we have access to quality education

Allow PWD to get married without losing benefits, etc.

The website for writing your comments is:

http://www.envision2010.net/comment_submit.php

From Self-Advocates Becoming Empowered (2.24.11):

Say NO to Institutions

We need your help! Freedom to live in the community is at risk.

The group called VOR – Voices of the R#tarded - is telling the government to keep institutions opened. 

We need self-advocates and allies to speak up and say NO to institutions.

Go to ADD's web site – fill out the form. Tell people how you feel. You can write 1 sentence or 2 sentences or a whole page. Just Do It!

We know that filling out surveys on a computer can be a pain in the neck– so ask a friend for help you if you need it.

This is very important! Please do it before Friday March 4^th.

The website for writing your comments is:

http://www.envision2010.net/comment_submit.php

 

From Sharon Lewis, Commissioner of ADD:

As the Commissioner for the Administration on Developmental Disabilities, public outreach and strategic planning are critically important items on my agenda.

There are so many complex issues affecting people with disabilities across the country - implementation of the Affordable Care Act, the new economic reality of states, persistent unemployment, education reform efforts, and our aging population - these are only a small sample of the significant changes that are shaping the future.

Additionally, thanks to many years of hard work by advocates, families, and communities, the realities for people with developmental disabilities have positively evolved in recent decades, including:

• Options to live in homes and communities of their choosing, with self-directed supports and services;
• Moving beyond simple integration and participation, into community interdependence and meaningful belonging;
• High expectations in educational outcomes, including access to college;
• Technology that is changing the landscape and providing countless new opportunities;
• Employment and economic self-sufficiency as achievable hopes and dreams, including for people with significant disabilities;

… and many other cultural, programmatic, service and social changes.

Given this shifting landscape, I have been honored to hear how you - self-advocates, family members, allies, and professionals - describe your vision of the future for individuals with developmental disabilities. Thank you for collaborating with us throughout this process.

Sharon Lewis
Commissioner
Administration on Developmental Disabilities

Also check out Commissioner Lewis's moving introduction at http://www.envision2010.net/index.php (captioned video)

http://www.envision2010.net/captioning/Lewis_Welcome_Philadelphia.pdf (transcript)