HLAA Testifies Before Congress on Emergency Alerting Issues
By Lise Hamlin
Director of Public Policy and State Development
October 2, 2009

“This is NOT a test: Will the Nation’s Emergency Alert System Deliver the President’s Message to the Public?” That was the topic of a 3 ½ hour hearing before the US House of Representative’s Committee on Transportation and Infrastructure, Subcommittee on Economic Development, Public Buildings, and Emergency Management. In addition to the testimony provided by Hearing Loss Association of America, the Subcommittee heard testimony from FEMA (Federal Emergency Management Agency), the Government Accountability Office, Maryland State Emergency Management Agency (MEMA), a Florida County Commissioner, National Council of La Raza, and Las Vegas PBS.

If an emergency happened tomorrow, do you know how you would get the information you need? Would it be accessible to you? If you live in a rural community that does not regularly caption the news, are you sure the emergency news that has been provided has captions or uses some other visual method (scrolling or crawling text, for example) to get the information to you? These are the kinds of questions we need to answer before an emergency.

Chairwoman Eleanor Holmes Norton and Ranking Member Mario Diaz-Balart had some hard hitting questions for FEMA. Others on the panel provided information to help the Committee ensure that information on emergencies gets out to everyone.

Still, in an emergency, we need to be sure that every one of us is prepared. It’s up to us to provide information to Congress and FEMA about what we need in an emergency. It’s also up to us to talk to local emergency responders, to join in CERT teams and to be actively involved with emergency planning to ensure that you are safe in an emergency.

View HLAA’s testimony.

You can read the testimony of all invited to testify or view the video of the hearing on http://transportation.house.gov (go to Hearings section) – but will not be available for long. Or click here for a temporary direct link (look on the right column for the list of testimonies). The Committee has a number of hearing s coming up, so plant to keep the video only for a few days; the written testimony should be available longer.

For those or you who are curious about House proceedings: open captioning is not provided all the time: HLAA requested the captions. Captioning was provided remotely, even though there is a court reporter in the room who is responsible for the official record. In fact, there are two official court reporters – each one working no more than an hour at a time. We were also told that if the court reporters go on the House floor, they need only work for 15 minutes at a time. Each reporter cleans up the text during their breaks so that it can be ready for the official record as soon as possible.

We also learned from staff that several people in the room told staff said the captioning was great and they would love to see that all the time. Isn’t’ that always the case?

Senator Tom Harkin takes the helm of the Senate HELP Committee
September 22, 2009

On September 16, 2009, Senator Tom Harkin was named chair of the Senate HELP (Health Education Labor and Pensions) Committee replacing Senator Ted Kennedy.

This change places Congress’s foremost champion of hearing loss and disability issues at the helm of this important committee. The Senator has a long history of supporting issues important to the disability community, including sponsoring the hearing aid tax credit legislation in the Senate, S. 1019 in this session of Congress. The bill introduced by Senator Harkin would provide a tax credit for all Americans, regardless of age. The House bill limits the tax credit to dependant children and adults over the age of 55.

Senator Harkin’s website provides a brief biography of the Senator, including the genesis of his interest in issues related to hearing loss and disability access:

Tom learned firsthand about the challenges facing people with disabilities from his late brother, Frank, who was deaf from an early age. He took this knowledge to Congress where and made passage of the Americans with Disabilities Act (ADA) of 1990 his signature legislative achievement. Known as the "Emancipation Proclamation for people with disabilities," this landmark law protects the civil rights of millions of Americans with physical and mental disabilities. The law has literally changed the landscape of America by requiring accessible buildings and transportation, and workplace accommodations for people with disabilities. To preserve the intent of the ADA after several court rulings weakened standards, Tom and Senator Orrin Hatch (R-UT) introduced the ADA Amendments bill to ensure that all Americans with disabilities are protected from discrimination. It was signed into law in September 2008.

We applaud Senator Harkin for all his work for people with disabilities, and wish him well in as Chair of the Senate HELP Committee.

HLAA Testifies at a Public Hearing on Medicare/Medicaid Coding for Cochlear Implants
June 1, 2009

On May 27, 2009, Brenda Battat, executive director of HLAA testified before the CMS Healthcare Common Procedure Coding System (HCPCS) Workgroup on issues related to coding of replacement parts for the external processor of the cochlear implant. HLAA requested new codes for the most expensive parts, the sound processor and the cable/coil. Traditionally Medicare/Medicaid has categorized all replacement parts under a miscellaneous code that is below actual costs leaving the balance to be paid out of pocket by the patient. Brenda Battat spoke on behalf of HLAA members many of whom are implant users. She herself uses an implant. HLAA also submitted written comments to the workgroup.

View HLAA written comments

Ginger Grant, audiologist, Brenda Battat, executive director of HLAA, and AG Bell member and parent of a son with a cochlear implant Marcy Kelly testified before the Healthcare Common Procedure Coding System (HCPCS) Workgroup on issues related coding of replacement parts for cochlear implants.

President Obama Launches Office of Public Engagement: A New Name, Mission for White House Liaison Office
May 19, 2009

WASHINGTON, DC - President Obama announced a new name and a new mission for the White House office charged with dealing most closely with the American people. The Office of Public Liaison is now the Office of Public Engagement. OPE, along with the Office of Intergovernmental Affairs, will serve as the front door to the White House through which ordinary Americans can participate and inform the work of the President.

http://www.whitehouse.gov/ope

Brenda Battat executive director of HLAA attended a White House briefing on April 15, 2009, orchestrated by Kareem Dale, associate director, White House Office of Public Engagement and special assistant to the President for Disability Policy. Dale, who is partially blind, coordinates the Administration's efforts to see that people with disabilities are on a level playing field with all Americans.

HLAA Represents Hearing Loss at White House Meeting
April 21, 2009

April 15, 2009, Washington, DC: Brenda Battat, executive director of HLAA, attended a meeting and briefing with senior White House officials related to disability matters at the White House. Kareem Dale, the special assistant to the President for Disability Policy, a newly-created position, brought together over 50 cross-disability representatives for a briefing and exchange of ideas with officials from the Executive Office of the President. Among them: Office of Personnel; Office of the First Lady; Domestic Policy Council; Office of the Staff Secretary; Technology Innovation and Government Reform; Office of Management and Budget; National Economic Council; Office of Public Liaison.

Kareem Dale opened the session saying “This is truly a new day for America and a new day for people with disabilities.” Senior advisor to President Obama, Valerie Jarrett, welcomed everyone to the session. Disability advocates were asked for their input and raised key issues such as education, employment, health care and civil rights. One of the First Lady’s priorities is supporting military families. HLAA requested that the First Lady give attention to hearing loss – both more protection in the field and support for returning veterans and their families who are trying to cope with hearing loss sustained in war. HLAA has heard from veterans with multiple injuries that of all of their disabling conditions, hearing loss causes them the most difficulty in readjusting. The latest number of veterans returning with hearing loss is 70,000.

White House Forums on Health Reform Solicit Input on Health Care Reform
March 23, 2009

According to the White House website on Health Care Reform: “Sky-rocketing health care costs are crushing family, business, and government budgets and threatening our economic future. Many Americans are struggling to make ends meet as the cost of care goes up while others face losing insurance as businesses struggle to cover employees. In order to get our economy back on track and get our fiscal house in order, we must finally get health care costs under control. President Obama recently told Congress “Health care reform cannot wait, it must not wait, and it will not wait another year.”

Several states are hosting regional forums on reform. This is your opportunity to make your needs known:

Burlington, Vermont
March 17th

Des Moines, Iowa
March 23rd

Greensboro, North Carolina
March 31st

Los Angeles, California
April 6th

If you can’t attend the meetings, do consider sending your concerns online at http://www.healthreform.gov/index.html.

Economic Recovery and Jobs: Do you have a personal story related to gaining or retaining your job?
February 23, 2009

Kareem Dale, Special Assistant to the President on Disability issues is looking for any person with a disability that has gone back to work or been rehired as a result of the economic recovery plan. For example, a company might start hiring again as a result of money they are going to receive or are making plans to re-hire and are seeking people with disabilities, or you might find you are able to keep your job that looked like it might disappear before the economic recovery plan was signed into law.

Send your stories to the Advocacy Department at HLAA and put in the header “Economic Recovery Plan”. We will pass those along to Mr. Dale.

Vice President Joe Biden Announces Kareem Dale as Special Assistant to the President for Disability Policy
February 23, 2009

First Time a President has a Special Assistant Focused Exclusively on Disability Policy

BOISE, ID, February 23, 2009 – Vice President Joe Biden today announced Kareem Dale as Special Assistant to the President for Disability Policy. The Vice President, who was leading a Presidential Delegation at the 2009 Special Olympics World Winter Games in Boise, Idaho, made the announcement during a stop at the Special Olympics’ Healthy Athletes Event, a worldwide program in which athletes receive a variety of health screenings and services.

"The commitment that the President and I have to Special Olympics and people with disabilities is deep and abiding. And we are backing up those words with real action at the White House," said Vice President Biden. "This is our first step to ensure that we have a strong advocate for people with disabilities at the highest levels of our Administration."

Dale, who is partially blind, will have direct access to the President in this role and he will coordinate the Administration’s efforts to see that people with disabilities are on a level playing field with all Americans.

Originally from Chicago, Illinois, Dale previously served as the National Disability Director for the Obama for America campaign. He also served on the Arts Policy Committee and the Disability Policy Committee for then-Senator Obama.

Dale graduated from the University of Illinois at Urbana-Champaign with a Bachelor's degree in Advertising in May 1995. He received his JD/MBA in May 1999 from the University of Illinois at Urbana-Champaign, graduating Cum Laude. While attending law school, Dale was also active in community service, including serving as president of two organizations, the Black Law Students' Association and Open Forum.

White House Sets Agenda for People with Disabilities
January 26, 2009

The new Administration has set up a website already and posted their position on disability issues.

"We must build a world free of unnecessary barriers, stereotypes, and discrimination.... policies must be developed, attitudes must be shaped, and buildings and organizations must be designed to ensure that everyone has a chance to get the education they need and live independently as full citizens in their communities."
-- Barack Obama, April 11, 2008

For President Obama’s full position statement on disability issues, visit:
http://www.whitehouse.gov/agenda/disabilities/

The White House website also notes:

“President Barack Obama plans to publish a weekly video address every Saturday morning of his presidency. Visit this page every week to watch the President's most recent video.”

However, we do note in the January 22, 2009, edition of the Washington Post, it was reported that “One member of the White House new-media team came to work on Tuesday, right after the swearing-in ceremony, only to discover that it was impossible to know which programs could be updated, or even which computers could be used for which purposes. The team members, accustomed to working on Macintoshes, found computers outfitted with six-year-old versions of Microsoft software. Laptops were scarce, assigned to only a few people in the West Wing. The team was left struggling to put closed- captions on online videos.”

We will be watching to make sure this address is fully captioned. We are pleased to find that the President’s first video address, Saturday, January 24, is open captioned.

HLAA Meets with President-Elect Obama’s Transition Team - Update
January 12, 2009

The consensus document of organizations representing people who are hard of hearing or deaf should appear on that site in the coming weeks.

You can view the document “Proposal for Leadership and Public Policy to Ensure Equal Access and Equal Opportunity for Deaf, Hard of Hearing, Late-Deafened and Deaf-Blind Americans.”   PDF Format  or  RTF Format

HLAA and other leaders from the community of people who are hard of hearing or deaf met with members of the Obama Transition Team December 11, 2008. Leaders at the meeting had worked hard to provide the Transition Team members with a consensus document on the issues impacting people who are hard of hearing or deaf. Transition Team member Kareem Dale welcomed us and made it clear the new administration would be looking for ways to ensure that all people with disabilities would have a seat at the table when decisions were being made that impacted their lives. It was an exciting opportunity to reach out to the new administration and make our voices heard.

The Obama-Biden Transition Team has put in place a remarkable online opportunity regarding how stakeholders influence public policy: http://change.gov/open_government/yourseatatthetable. The consensus document of organizations representing people who are hard of hearing or deaf should appear on that site in the coming weeks.

This site promises to show all the meetings they are holding with stakeholders, and includes links to materials those stakeholders are using in those meetings.

There's also an opportunity for the public to comment on each meeting and the issues raised.

HLAA meets with Acting Surgeon General Steven K Galson 

May 12, 2008, Washington, D.C.: Brenda Battat, executive director of HLAA   arranged for a meeting with acting Surgeon General Steven K. Galson to talk about the need for more public education about hearing loss.  HLAA invited six other stakeholder groups to join the meeting at which they stressed the need to start a public dialogue about the causes, impact on physical and pyschosocial well being of untreated hearing loss,  treatment options available , the stigma effect and the need to protect hearing from noise. There are 31.5 million Americans with hearing loss with 10 million resulting from noise exposure that could have been prevented but cannot be reversed.  Hearing aids are effective devices but they are underutilized with less than 25 % of people who could benefit actually using them. 

Sample letter

Dear Congressman _________:

I am writing to ask you to support H.R. 2329, the Hearing Aid Tax Credit Bill. Very few health insurances cover hearing aids and Medicare excludes them from coverage. As a result, Americans with a hearing loss are forced to pay out of their own pockets for hearing aids that can cost as much as $2-$3,000 each. Something has to be done to help people get the hearing aids they need.