On Friday, January 13, 2012, BIAA’s government affairs director along with NASHIA’s lobbyist met with staff representing the National Disability Rights Network to discuss TBI Act reauthorization in 2012. BIAA will continue to work closely with other stakeholders as the reauthorization of the TBI Act moves forward.

AHRQ Reports Open for Public Comment

The Effective Health Care Program, Agency for Healthcare Research and Quality (AHRQ) made available to the public two draft reports that are available for comment. This review is part of a new series of reports on Closing the Quality Gap: Revisiting the State of the Science (hereafter, CQG series).

The report, Multidisciplinary Postacute Rehabilitation for Moderate to Severe Traumatic Brain Injury, is available for public comment until February 9, 2012.

The report, Closing the Quality Gap Series: QI Measurement of Outcomes for People with Disabilities, is available for public comment until February 6, 2012.

I look forward to seeing you all at the Brain Injury Awareness Day on March 21, 2012!

Schedule for March 21, 2012

10:00 AM – 1:00 PM – Brain Injury Awareness Fair, First Floor Foyer of the Rayburn House Office Building

2:30 PM – 4:00 PM – Congressional Briefing, Location to Be Announced

5:30 PM – 7:30 PM – Reception Celebrating Brain Injury Awareness Month, Location to be announced

Other Activities

BIAA

strongly encourages

everyone that plans to attend Brain Injury Awareness Day to make appointments with their Representatives and Senators to advocate for increased funding for the programs authorized through the TBI Act. Please see tips below:

Congressional Appointments

To find House of Representatives information:

www.house.gov, type in zip code to locate your

Representative

. Click on your member’s link for their Web site where you will find their address and phone number.

To find Senate information:

www.senate.gov, select state and view Senators’ individual Web sites for address and phone number.

When calling the main number of the Senator or Representative, ask to meet with the health legislative assistant (House) or the health policy staff (Senate).

• Make sure to let them know that you are a constituent
  • Ask them for a few minutes of their time on March 21, 2012 to discuss the need for increased resources for brain injury programs in their state.

Example:

Hello ______________ my name is ______________________. I am a constituent of yours and will be visiting Capitol Hill on Wednesday, March 21, 2012 as part of Brain Injury Awareness Day. Could I have a few minutes on that day to talk to you about (state’s) brain injury resources and how they affect the brain injury community in your district/state?

Navigating Capitol Hill

If you are coming in from out of town and require a hotel, below you will find a list of accommodations within a few miles of Capitol Hill:

Hyatt Regency, http://washingtonregency.hyatt.com/hyatt/hotels/index.jsp

Courtyard, Marriott, http://www.marriott.com/hotels/travel/wasny-courtyard-washington-capitol-hill-navy-yard

Capitol Hill Suites, http://www.capitolhillsuites.com

Hotel George, http://www.hotelgeorge.com

Marriott, Residence Inn, http://www.marriott.com/hotels/travel/wascp-residence-inn-washington-dc-capitol

A map of the key House and Senate buildings can be found below:

http://www.aoc.gov/cc/cc_map.cfm

BIAA encourages advocates to check with their state brain injury organizations to determine if others from their state will be attending and if so, to coordinate meetings.

BIAA will provide printed maps of the Senate and House buildings as well as easy to follow fact sheets outlining the issues that you will be advocating for in your meetings. Electronic versions will be distributed and posted to BIAA’s website in early March. BIAA will also provide color copies at the Brain Injury Awareness Fair. Please check back for updated information on Brain Injury Awareness Day! If you have any questions or concerns, please contact Amy Colberg at acolberg@biausa.org.

On September 30, 2011, BIAA, NASHIA, and NDRN met with both the offices of Congressman Bill Pascrell, Jr., Co-chair of the Congressional Brain Injury Task Force, and Senator Tom Harkin, Chairman of the Senate Health, Education, Labor and Pensions (HELP) Committee to discuss TBI Act reauthorization in 2012. Both offices were receptive to entertaining changes in the legislation next year.

TBI Act stakeholders will continue to lay the legislative groundwork for reauthorization of the TBI Act in 2012. Check back in future editions of Policy Corner for updates on our progress.

TBI Act

On September 21, 2011, the Senate Appropriations Committee considered an FY12 Labor Health and Human Services, Education and Related Agencies (Labor/HHS) bill, which contained TBI Act funding. In the past year, more than 50 programs have been cut from the Labor/HHS budget. However, largely through BIAA and NASHIA’s advocacy, TBI Act funding has been sustained thus far.

Along with level funding, the Senate Appropriations Committee took BIAA and NASHIA’s recommendation and included language in the bill report encouraging HRSA’s work on a long-range plan for the Federal TBI Program. Specifically the report states:

“The Committee supports the efforts of HRSA to develop a long-range plan for the Traumatic Brain Injury program. The Committee encourages HRSA to collaborate with other Federal agencies during this process and to solicit broad input from consumers, States, professionals and care providers in order to ensure that the program maximizes resources related to the treatment and prevention of traumatic brain injury.”

The support the Committee has shown for HRSA’s ongoing work to elevate the Federal TBI Program lays important groundwork for TBI Act reauthorization as well as increased appropriations in future years. During meetings with Appropriations staff, BIAA has learned how much they value HRSA’s willingness to work with stakeholders as well as collaborate with other agencies.

TBI Model Systems

Funding for the TBI Model Systems of Care program (TBIMS) also resides within the FY12 Labor/HHS bill; however, the TBIMS program does not currently have a congressional budget line item to target for specific funding levels. The program is funded at the agency level by money allocated to the Department of Education’s National Institute on Disability and Rehabilitation Research (NIDRR). Therefore, although the program is vital to brain injury research, Congress cannot guarantee that it remains consistently funded.

To address this issue, BIAA and other stakeholders representing the model system at JFK Johnson Rehabilitation Institute negotiated support for inclusion of clarifying language in the Senate Appropriations report from the co-chairs of the Congressional Brain Injury Task Force and the office of Rep. Gabby Giffords, whose letters can be found on our website.

On September 23, 2011, BIAA learned that NIDRR sustained the same level of funding as FY11 and the committee included the following language in its report:

“The Committee strongly supports the Traumatic Brain Injury Model Systems [TBIMS] Centers program funded by NIDRR. Almost 500 peer-reviewed publications have resulted from TBIMS research since 1987, bringing dramatic improvements to the treatment of traumatic brain injury for both civilian and military populations. The Committee is aware that the TBIMS Centers will compete for new 5-year awards in fiscal year 2012. The Committee bill included sufficient funds to support the current size of the TBIMS Centers program and to provide adequate resources to meet the research objectives of the TBI MS program. The Committee intends that funds provided will enhance the capability of the TBIMS Centers to conduct critical multi-center investigations, expand the TBIMS Centers’ scope of intervention studies, maintain the ongoing high quality TBIMS Centers’ longitudinal research while keeping pace with the increased number of participants followed, and promote continued collaboration to improve outcomes for civilians and military populations with traumatic brain injury. The Committee also commends NIDRR for establishing collaboration between the TMIMS Centers program and the Department of Veterans Affairs and encourages continuation of these efforts.”

Although, this language is not binding on NIDRR, it clearly shows the intent of Congress to continue this program at a minimum of its current funding level.

As many of you know, BIAA was out front on the Concussion Treatment and Care Tools (ConTACT) Act, introduced in 2009 by Rep. Bill Pascrell, Jr., co-chair of the Congressional Brain Injury Task Force. Although the legislation wasn’t enacted, it was the only federal concussion bill to get any traction, despite the public relations muscle behind other proposals.

BIAA’s early support positioned us to help broker a deal between the House, Senate and CDC to carry forward provisions of the bill through CDC’s annual TBI Act budget. BIAA also ensured that the bill language included recommended collaboration between state brain injury associations and the state government agencies responsible for implementing many of the deliverables.

On September 27, 2011, Rep. Pascrell and Sen. Menendez (Senate champion for the measure) announced that CDC will begin to implement a major component of the ConTACT Act by forming an expert panel to define the need, scope, and expectations of federal concussion guidelines for student athletes. The guidelines that CDC develops will take into consideration advice from experts across the country and support the efforts of the current nationwide state brain injury concussion law initiative.

The CDC has notified the lawmakers that it will convene the expert panel during the next year. The resulting pediatric MTBI (mild traumatic brain injury) guidelines and recommendations are expected to be finalized by the fall of 2013. BIAA is currently working with legislative staff and CDC to address other key components of the ConTACT Act including grants to states for implementation of these federal guidelines and return to play regulations as specified in each state’s sports and concussion law, if applicable.

On Friday September 9, 2011, the House Appropriations Subcommittee on Labor/HHS will consider a draft version of a Fiscal Year 2012 Health and Human Services, Education, and Related Agencies (Labor/HHS) bill. Contained in the bill will be provisions important to people with brain injury including programs authorized through the TBI Act as well as the TBI Model Systems of Care program. Although subcommittee consideration will likely be top line figures only, it is important that Members of Congress remember brain injury as a vital issue requiring broad attention.

It is essential that these underfunded programs gain the resources necessary to improve access to quality care for people with brain injury. Call your Congressmen now!

Take Action!

To contact your Member of Congress to urge them to tell the Subcommittee to support sustained and increased funding for TBI programs, call the Capitol Switchboard at (202) 224-3121 or 800-965-4701 and ask for your Member’s office. If you do not know who your Member of Congress is, visit www.house.gov and insert your zip code in the top right corner of the home page. Feel free to use the following script when speaking with Congressional staff:

Hello, my name is _______________ and I’m calling from ______________, which is in your district. Please register my support for TBI programs contained in the Labor/HHS/Education appropriations bill and urge Representative ____________ to support sustained and increased funding for the TBI Act and TBI Model Systems of Care found in the bill.

Please tell Rep. ____________ to voice his/her support for these programs to the Labor/HHS Appropriations Subcommittee which are vitally beneficial to people with brain injury and their families who reside in your district. It is critical that the Subcommittee consider this important issue while allocating funding during consideration of this legislation on Friday, September 9^th. Thank you for your continued support of people with brain injury.

Due to last week’s debt ceiling debates, the Labor/HHS Appropriations Subcommittee consideration of FY12 spending, including consideration of funding for programs such as the TBI Act and the TBI Model Systems have been postponed until after the August recess. BIAA will monitor the Committee schedule and alert grassroots advocates when Congressional communication is needed.

On July 11, 2011, BIAA and NASHIA met with representatives from HRSA to follow up on the development of a Federal TBI Program long-range plan. After completion of a June interagency meeting called by HRSA including agencies that administer TBI programs such as DOD, VA, HHS, Department of Education and more, HRSA reported that important work was completed to coordinate efforts and stamp out program duplication.

In the coming weeks, HRSA plans to work with BIAA and NASHIA to coordinate a second meeting including brain injury survivors, BIA state affiliates, caregivers and family members to move further in laying out the Federal TBI Program’s long-range plan. HRSA is also committed to working with stakeholders to ensure positive changes for both the agency and the brain injury community in the 2012 TBI Act reauthorization.

TBI Act

This week, BIAA, in collaboration with NASHIA, submitted a letter to both the Senate and House appropriations committees signed by more than 40 national and state organizations to urge appropriators to sustain and bolster funding for programs authorized through the TBI Act. These letters will complement similar letters already submitted to the committee by the Congressional Brain Injury Task Force.  BIAA would like to thank all of the organizations and BIA state affiliates that supported this effort.

TBI Model Systems

On Friday, May 20, 2011, working with BIAA and JFK Johnson Rehabilitation Hospital, both the office of Congresswoman Giffords and the co-chairs of the Congressional Brain Injury Task Force (Congressman Bill Pascrell, JR. and Congressman Todd Russell Platts) submitted letters to the House Appropriations Committee, Subcommittee on Labor, Health and Human Services, Education and related agencies encouraging the committee to include the following language in their FY12 report:

The Committee strongly supports the Traumatic Brain Injury Model Systems (TBIMS) program funded by NIDRR.  Almost 500 peer-reviewed publications have resulted from TBIMS research since 1987, bringing dramatic improvements to the treatment of TBI for both civilian and military populations.  The Committee is aware that the TBIMS Centers will compete for new 5-year awards in fiscal year 2012.  The Committee bill includes sufficient funds to support no fewer than 16 competitively-awarded Centers with adequate resources to meet the research objectives of the TBIMS program.  The Committee intends that funds provided will enhance the capability of Centers to conduct critical multi-center investigations, expand the Centers’ scope of intervention studies, maintain the ongoing high quality of the Centers’ longitudinal research while keeping pace with the increased number of participants followed, and promote continued collaboration to improve outcomes for civilians and service members with traumatic brain injury.  The Committee also commends NIDRR for establishing collaboration between the TBIMS program and the Department of Veterans Affairs and encourages continuation of these efforts.

This language, if included in the final committee report, would help provide assurance that the National Institute on Disability and Rehabilitation Research (NIDRR), housed in the Department of Education, will at least sustain the already existing 16 TBI Model System Centers at their current funding levels in the next fiscal year in order to continue their vital research.

HRSA Federal TBI Program

This week, BIAA and NASHIA submitted a request to the Senate Appropriations Committee, Subcommittee on Labor, Health and Human Services, Education and Related Agencies to include the following language in their FY12 report:

The Committee supports the efforts of the Health Resources and Services Administration (HRSA) in developing a long-range plan for the Federal Traumatic Brain Injury (TBI) Program. The Committee encourages HRSA to collaborate with other federal agencies during this process and to solicit broad input from consumers, states, professionals and care providers in order to ensure that the program maximizes resources related to the treatment and prevention of traumatic brain injury.

Both BIAA and NASHIA are encouraged by the possibility of documented Congressional support for the important work that HRSA has already begun in developing a long-range plan for the Federal TBI Program aimed at elevating awareness of the program and future funding.

Medical Guidelines, Post-Acute Rehabilitation

As reported in last week’s edition of Policy Corner, on May 11, 2011, Rep. Todd Russell Platts, co-chair of the Congressional Brain Injury Task Force, working in collaboration with the office of Congresswoman Gabrielle Giffords, Task Force members and the Brain Injury Association of America, introduced an amendment to the National Defense Authorization Act (NDAA) that authorizes $1 million for the development of treatment guidelines for post-acute rehabilitation of traumatic brain injury. The amendment was adopted en bloc by the Full House Armed Services Committee by voice vote.

On Friday, May 13, 2011, the Office of Congresswoman Giffords submitted an FY12 appropriations request to the Defense Appropriations Subcommittee for the purpose of funding the program authorized through the pending FY12 NDAA to develop medical guidelines specific to post-acute rehabilitation. BIAA is following committee activity closely and will alert grassroots advocates if any action becomes necessary.

This week, a fiscal year 2011 spending measure was finally cleared by both the House and the Senate and will be sent promptly to the President’s desk. The White House issued a statement of administration policy soon after final passage that confirmed that President Obama would sign the bill.

Programs authorized through the TBI Act and the TBI Model Systems of care program were preserved in the final package. Now that FY11 has been cleared, BIAA will continue its work on FY12 appropriations soon to be debated in both chambers.

On April 8, 2011, BIAA submitted FY12 written testimony to both the Senate and House Appropriations Subcommittees on Labor Health and Human Services and Related Agencies. Both letters proposed the following funding increases for TBI Act programs and the TBI Model Systems of Care Program.

• $10 million (+ $4 million) for the Centers for Disease Control and Prevention TBI Registries and Surveillance, Brain Injury Acute Care Guidelines, Prevention and National Public Education/Awareness
• $8 million (+ $1 million) for the Health Resources and Services Administration (HRSA) Federal TBI State Grant Program
• $4 million (+ $1 million) for the HRSA Federal TBI Protection & Advocacy (P&A) Systems Grant Program
• $11 million (+ $1.5 million) for theTBI Model Systems of Care Program, and line item status within the broader NIDRR budget

Grassroots advocates should look for FY12 appropriations alerts in the coming months.