For Immediate Release:                           Contact: Kirsten Fedewa for CHI
Thursday, June 30, 2005                                                 Tel: 703.684.3339

                                                                                        Patricia Lowe, CHI
                                                                                         Tel: 703.684.0330

Children's Hospice International of Alexandria, VA Helped Develop New Program

WASHINGTON, D.C. - Children's Hospice International (CHI) praised the U.S. Department of Health and Human Services (HHS) and Florida health officials today for instituting an innovative program based on a model of care developed by CHI for critically ill children and their families.

Florida officials hope to serve approximately 1,000 children initially under this new program, which will run through June 2007 under waiver authority found in Section 1915(b) of the Social Security Act. The waiver is based on the CHI Program for All-inclusive Care for Children and their Families® (CHI PACC®) model of care, and will be implemented across seven pilot sites around the state.

"I am approving this new Medicaid program in Florida because I believe we must do everything possible to lighten the heavy burden on families of children who may be near the end of their lives," said HHS Secretary Mike Leavitt. "This is a step beyond traditional hospice rules, and the right thing to do for these most vulnerable children and their families."

"The diagnosis of a life-threatening disease in a child is devastating for families," said Mark B. McClellan, M.D., Ph.D., administrator of the Centers for Medicare & Medicaid Services (CMS), the federal agency that oversees the Medicaid program. "This waiver will combine medical and support services currently available in Medicaid with counseling and respite care that are also important for families with critically ill children."

The CHI PACC waiver will provide more assistance to families coping with the life-threatening illness of their child. Families will receive respite care and special counseling services that can be important in preserving the family unit in a time of crisis.

"Florida Medicaid is committed to caring for Florida's most vulnerable with compassion and common sense," said Florida Agency for Health Care Administration (AHCA) Secretary Alan Levine. "By providing key support services to children and their families as they cope with life-threatening conditions, Children's Hospice International, CMS and AHCA will not only ensure that immediate needs are met, but will make a significant contribution toward the quality of life of Florida's most courageous children and families."

CHI Founding Director Ann Armstrong-Dailey said: "This landmark health care policy would not have been possible without the compassionate leadership of Governor Bush and Secretary Levine, and the support of Secretary of Health & Human Services Mike Leavitt - as well as the technical assistance and guidance of Dr. McClellan and his team at CMS. We are deeply grateful for their hard work and dedication to these families in need."

"Children and families will now have a more formally coordinated program of curative and palliative care, and the family support that they so desperately need," said Florida CHI PACC Director Jayne Parker.

While the CHI PACC model provides a core set of standards and principles, the model itself is flexible, allowing states to design their own programs. Currently, about 30 percent of the children who have life-threatening conditions qualify for Medicaid.

"This policy decision paves the way for Colorado's waiver, which would allow our state the freedom and flexibility to develop solutions to better serve sick children and their families through 'The Butterfly Program' in Denver," said Governor Bill Owens (CO).

Initial funding totaling $3.2 million for multi-state grant to develop CHI PACC programs was secured through the federal appropriations process by U.S. Congressman James Moran (D-VA).

"CHI PACC allows states to receive federal reimbursement for a more coordinated service package than is generally provided under Medicaid. This is better, more comprehensive care for families in need, with less cost to taxpayers," said Moran. U.S. Senator Robert Bennett (R-UT) has also been a key supporter of the national CHI PACC program, and Utah's CHI PACC initiative since its inception.

In this year's federal budget, CHI has applied for an additional $1 million appropriation to continue to expand CHI PACC to additional states, and to begin the formal program evaluation. Texas has requested a $350,000 appropriation this year to pursue their CHI PACC model of care and waiver. Other states seeking to implement CHI PACC include Arkansas, California, Louisiana, New Mexico, Pennsylvania, Ohio, Tennessee, Texas, and West Virginia.

Supporters on Capitol Hill, including U.S. Senator John Warner (R-VA), and U.S. Representatives Joel Hefley (R-CO) and Jack Murtha (D-PA), are also expecting to extend the CHI PACC model of care to U.S. military families through a DoD CHI PACC program. The initial pilot for this program would be implemented at Walter Reed Army Medical Center.

CHI officials have scheduled a CHI PACC briefing in late July on Capitol Hill for members of Congress and their staffs, and another briefing for Governors and their staffs in late July at the Hall of States.

CHI is a 501(c)3 non-profit organization founded in 1983 to ensure appropriate hospice and palliative care for children with life-threatening conditions and their families worldwide. Original Honorary Board members included former First Lady Barbara Bush, former Senate Majority Leader Bob Dole (R-KS), and the late U.S. Senator Claiborne Pell (D-RI). The CHI PACC program is a living memorial to Mattie J.T. Stepanek.