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 Background
Approximately 144,000 California children have a lifespan limiting illness and are in a publicly funded health-care program. Many more who are insured privately still are not eligible to receive benefits for hospice care. But that is about to change.
In 2001, Children’s Hospice International (CHI), with technical assistance from the Medicare and Medicaid Centers (CMS), members of the United States Congress, and leaders from the health care community, developed the Children’s Hospice International Program for All-Inclusive Care for Children (CHI PACC). This program was intended to build on existing international models to overcome economic barriers to care for children with life-threatening or terminal conditions in the United States. Since then, in an effort to better serve terminally ill children, a number of states have relaxed their Medicaid hospice rules. The latest to do so is California. George Mark Children’s House is a member of the California Children’s Hospice and Palliative Care Coalition leading this effort (CHPCC). As a result of the Coalition’s efforts, AB 1745 was recently signed into law.
What AB 1745 Does.
On Tuesday, September 19, 2006, California Governor Arnold Schwarzenegger signed state legislation (AB 1745), the Nick Snow Children's Hospice & Palliative Care Act of 2006, to test a new pediatric palliative care benefit in MediCal, the state’s Medicaid program. In a break from the past, the new law enables individuals under age 21 years to qualify for Medicaid hospice care regardless of how long they may have to live. Young beneficiaries also will be allowed to receive curative, as well as palliative, care.
The law further states that the pilot may be implemented only to the extent that federal financial participation is available, and California must submit a waiver for the benefits to the Centers for Medicare & Medicaid Services (CMS). The waiver requires the California Department of Health Services to develop, implement and evaluate a pilot project to provide a pediatric palliative care benefit, including services available through the MediCal hospice benefit. They expect to submit the waiver application to CMS within the next 12 months, and the pilot is expected to launch in Alameda County, home of the George Mark Children’s House.
The CHPCC Public Policy Committee members, California Association for Health Services at Home (CAHSAH), California Children’s Hospital Association (CCHA), California Hospice & Palliative Care Association (CHAPCA), Children’s Specialty Care Coalition, and George Mark Children’s House, as well as other key members of the Coalition, were instrumental in getting this legislation passed. California Assemblywoman Wilma Chan was the legislation’s author, with California Senate President pro Tem Don Perata, Senator Deborah Ortiz and Assemblyman John Laird as co-authors. Stan Rosenstein, Deputy Director of the California Department of Health, Medical Care Services, has been a leader within the state MediCal system in promoting better care for California families whose children have life-threatening illnesses.
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