AUCD Legislative News InBrief

April 14, 2008

Budget and Appropriations

AUCD joined with other representatives of Friends of NICHD last week on visits with House and Senate appropriations staff to discuss funding for the National Institutes on Health, including the Eunice Kennedy Shriver National Institutes of Child Health and Human Development (NICHD) which provides core funding for the Intellectual and Developmental Disabilities Research Centers (IDDRC).  The primary mission of the Friends of NICHD is to advocate on behalf of the Institute during the annual congressional appropriations and budget processes. The coalition's FY 2009 funding recommendation for NIH is $31.1 billion, an increase of approximately 6.6 percent. The coalition supports an equal percentage increase for NICHD to $1.337 billion for FY 2009.


AUCD is participating in a CCD sponsored congressional roundtable discussion and briefing on disability program funding on April 16.  The briefing will take place in the Capitol.  An invitation was sent to staff of key appropriators and authorizing committees.  Kim Musheno, Director of Legislative Affairs for AUCD, will be one of the presenters with her brother-in-law, Bill Alston, a man with autism and intellectual disabilities.  Also presenting are Donna Meltzer, Epilepsy Foundation; Jennifer Dexter, Easter Seals; and Kathy McGinley, National Disability Rights Network.



Last Wednesday the House Energy and Commerce Health Subcommittee approved the Protecting the Medicaid Safety Net Act of 2008 (H.R. 5613) by voice vote after adopting by voice a substitute amendment by full committee Chairman John D. Dingell (D-MI).  The amendment was a compromise struck to gain Republican support.  The amendment clarifies that the bill applies to the seven new Medicaid regulations lawmakers oppose, and would not block other new administrative regulations in the future.  It creates an independent review study of the rules and adds $25 million for anti-fraud activities.  It also proposes offsets to pay for the $1.65 billion cost for the one-year moratoriums. In return, full committee Ranking Member Barton (RTX) said he would support the bill, and urge the White House not to oppose it.  The administration previously said that President Bush would almost certainly veto the bill.  H.R. 5613 currently has 150 co-sponsors.  It will be marked up in full committee this week.  One possibility could be to include it in the $108 billion supplemental funding bill for the wars in Iraq and Afghanistan, which is expected to come to the house floor late this month or early May.  A similar bill (S 2819) has been introduced in the Senate by Rockefeller (D-WV), Snowe (R-ME), and Kennedy (D-MA) that also includes a moratorium on a CMS SCHIP directive and targeted Medicaid state fiscal relief.  Democratic leaders continue to shape a second economic stimulus package that is likely to include extended unemployment benefits, additional funds for state and local construction projects, a temporary boost in federal Medicaid dollars and a food stamp increase.  The AUCD Action Center has alerts to gain addition co-sponsors for the House and Senate bills: 



Senate Finance Chairman Baucus (D-MT) continues negotiations on a Medicare bill to address a scheduled decrease in physician payments.   The bill is expected on the Senate floor in mid-May.  The bill under discussion would cost $8 billion over five years, which barely covers the cost of an 18-month reimbursement patch and leaves little room for extra provisions.  The last Medicare physical fix bill contained the moratorium on the Medicaid Rehabilitation and School-Based Services regulations, which expire on June 30, 2008. 


DD Act Regulations

Last Thursday, ADD published a notice of proposed rulemaking (NPRM) of regulations to implement the Developmental Disabilities Assistance and Bill of Rights Act of 2000 in the Federal Register. The 35 page document can be found at  AUCD will host a conference call for interested UCEDD Directors and staff to discuss the proposed regulations, what they might mean for the DD Act organizations, and the public comment process.AUCD will prepare comments on the proposed regulations and work with the Consortium for Citizens with Disabilities DD Task Force to prepare joint comments.


Family and Medical Leave

AUCD signed on to comments, prepared by the National Partnership for Women and Families, concerning the Department of Labor's proposed regulations on the Family and Medical Leave Act (FMLA).  Passed in 1993, the FMLA provides qualified workers with 12 weeks of job-protected unpaid leave and continues their health insurance during that time.  An employee may use the leave to care for their own serious health condition; to provide caregiving for an immediate family member with a serious health condition (which could include many individuals with lifelong disabilities); or in the first year after having or adopting a new child.  For the first time since its passage, the law was extended this year for military families.  Some of these provisions include 26 weeks of leave to families of injured service members and a more expansive definition of family.  There are several bills pending in Congress to further expand the FMLA, including bills to provide paid leave; a hearing held last week in the House Education and Labor Workforce Protections Subcommittee commemorated the 15th Anniversary of the FMLA and highlighted some options for expansion.  Unfortunately, the proposed regulations on the FMLA would make it more difficult for individuals and families.  The proposed regulations include a number of changes to certain reporting, certification, and medical requirements.  For more information visit the National Partnership's FMLA Regulations Page. 


Newborn Screening

On April 8, the House of Representatives by voice vote passed S. 1858, the Newborn Screening Saves Lives Act, legislation introduced by Sen. Christopher Dodd (D-CT) aimed at ensuring that every baby born in the United States will be tested for a full range of genetic and metabolic disorders.  The Senate bill was co-sponsored by Sen. Orrin Hatch (R-UT).  The measure, which passed the Senate in December and now goes to the President for his signature, includes provisions to educate parents and health care providers about the importance of newborn screening, to improve follow-up care for infants with an illness detected through newborn screening, and to help states expand and improve their newborn screening programs.  Health screenings for newborns currently vary widely from state to state with regard to the number and types of conditions tested.  Some states test for as few as four disorders, while others test for 30 or more, according to the National Newborn Screening and Genetics Resources Center.  The bill promotes more uniform screening procedures and allows states the resources to expand their screening programs to reach more children.  Each year an estimated 4,000 babies are identified and treated for conditions that could threaten their lives or health, often preventing death and long-term disability.


Traumatic Brain Injury Act

The House also passed, under suspension of the rules, the reauthorization of the Traumatic Brain Injury Act (H.R. 1418) which authorizes research and public health activities related to trauma and traumatic brain injury.


Genetic Information Nondiscrimination Act

Senate leaders are considering the possibility of putting the Genetic Information Nondiscrimination Act (GINA) S. 358, on the floor this week after the Senate debates a highway technical corrections bill. The bill has passed the Senate several times, but it will require a cloture vote to pass again. Senator Coburn (R-OK) has not lifted his hold on the measure, and his aide said he would welcome the debate and the chance to offer amendments.  Coburn and 10 other Senate Republicans sent a letter to Reid last month outlining several objections to the bill, including its privacy protections and language on business necessity exemptions.


CMS Administrator

Last week Dennis Smith resigned as Administrator of CMS.  Herb Kuhn will be appointed as the Acting Center Director.  He is currently the Deputy Administrator under Kerry Weems and served as the Director of the Center for Medicare Management.