For Immediate Release

Media Contact: Ann Andrews Morris 202-746-6091

California’s Pediatric Palliative Care Waiver Approved by Federal Government
— California is Third State to Pass Waiver to Ensure that Children with Life-Threatening Conditions Have Access to More Comprehensive and Compassionate Care —

December 5, 2008 (Sacramento, CA) – For the first time in California history, children diagnosed with a life-threatening condition will have access to an innovative, comprehensive model of care which addresses their unique needs and that of their families. The new benefit includes a home and community based waiver which was approved earlier this week by the Centers for Medicare and Medicaid, the US federal agency which administers Medicare, Medicaid, and the State Children’s Health Insurance Program. The news was announced today by Children’s Hospice and Palliative Care Coalition (CHPCC), which developed the model of care and has been advocating for the passage of the waiver for the past seven years.

“With the passage of CHPCC’s pediatric palliative care waiver, we have a unique opportunity and responsibility to provide excellent healthcare for those too little and too sick to speak for themselves,” stated Melissa Gilbert, actor and CHPCC sustaining board chair. “We will work very closely with the California Department of HealthCare Services to make these much needed benefits a reality. And CHPCC is working closely with several other states to enact similar models of compassionate and fiscally responsible healthcare for children.”

Under the new system, the services that will be added to the package of current MediCal offerings include: community-based care coordination; respite care; expressive therapies such as art and music; family training; and bereavement counseling. These new benefits effectively enable children living with certain medical conditions who are under age 21 and eligible for full-scope MediCal to access community-based support services through a licensed hospice provider concurrent with ongoing curative therapies intended to cure their disease or prolong their lives.

“We believe that it is inhumane to require parents to give up on curing their child’s disease in order to receive compassionate family support services provided by a hospice team,” stated Lori Butterworth, co-founder and co-executive director of CHPCC, “Our work in Central California has demonstrated that under this model we can provide better healthcare for children and make more efficient use of taxpayer dollars statewide.”

The waiver will be launched in 13 California counties over the next three years, with the first five counties — Alameda, Monterey, San Diego, Santa Clara and Santa Cruz scheduled to roll out in April 2009. These will be followed by Humboldt, Marin, Orange, Sacramento, San Francisco, and Sonoma counties in 2010 and Fresno and Los Angeles counties in 2011.

“We are deeply grateful to the staff at the California State Department of Healthcare Services and to Governor Arnold Schwarzenegger for their ongoing commitment to finding innovative ways to address children’s critical healthcare needs, particularly in this challenging economic climate,” stated Devon Dabbs, co-founder and co-executive director of CHPCC.
The unique delivery model proposed under the new benefit is based upon a community-based care coordination program, developed and instituted by CHPCC, which currently provides direct services for children with life-threatening conditions and their families living in Central California.

“Caring for children with critical illnesses is one of the state’s highest priorities. We commend the Children’s Hospice and Palliative Care Coalition for its dedication in getting this critically important waiver approved. Its efforts were invaluable,” responded Toby Douglas, incoming chief deputy director of Health Care Programs at the California Department of Health Care Services.

Data collected from CHPCC’s model of care, which validates the efficacy and fiscal responsibility of community-based care coordination in outlying and rural areas, is the foundation for California’s new pediatric palliative care benefit.

“Our sacred duty is to relieve suffering particularly in children,” added Glen I. Komatsu, MD, medical director, TrinityKids Care, Los Angeles, “The passage of this benefit will allow us, the healthcare givers, the means to address the suffering of children with life-threatening conditions and their families in an unprecedented, more compassionate fashion.”
The provision of a federal waiver as a means to opening access to hospice and palliative care services was first successfully implemented in Florida and Colorado under the Children’s Hospice International’s Program for All Inclusive Care.

The mission of Children’s Hospice and Palliative Care Coalition is to ensure compassionate, comprehensive care for children with life-threatening conditions and to create programs, which directly improve the quality of their lives. Towards this end, CHPCC successfully enacted the Nick Snow Children’s Hospice & Palliative Care Act (Assembly Bill 1745) the precursor to the waiver and recently partnered with the National Hospice and Palliative Care Organization to develop “Partnering for Children,” a national public engagement campaign which includes resources and tools to raise national awareness about the unique needs of children with life-threatening conditions. This partnership will facilitate the national impact of California’s waiver service delivery model.

Founded in 2001 by Lori Butterworth and Devon Dabbs, Children’s Hospice and Palliative Care Coalition is a social movement, which unifies families, children’s hospitals, hospices, home health, grassroots agencies, and individuals to improve care for children with life-threatening conditions and their families.
www.childrenshospice.org