CHILDREN’S HOSPICE PROGRAM PREMIERES
Volume 28, Issue 492 May 25, 2007
Matthew Gever
As part of its Health Reform Law of 2006, the Bay State has established a new program to provide hospice care for children. Unlike most states that offer children’s end-of-life care through Medicaid, Massachusetts will self-fund a program to bring palliative care to all children in the Bay State.
The program is designed to tailor hospice to children, whose needs are different from those of adults. “All the palliative care programs were for older people at the end of life and were focused on making them comfortable in their waning days,” said Senator Richard Moore. “The program was needed because there was not a system in place to aid children and their families who face serious or terminal illness.”
Children are often overlooked when it comes to hospice care. The National Hospice and Palliative Care Federation estimates that only one in ten children who need palliative care receive it. Some of the more common illnesses in children are cancer, AIDS, cystic fibrosis, renal failure and severe cerebral palsy.
Currently, 47 states and the District of Columbia provide the “optional” benefit of hospice under Medicaid. Federal rules require that individuals have a terminal illness, which generally means the patient has six months or less to live. Beneficiaries also must agree to forego curative treatment and accept only palliative care, which focuses on pain control and symptom management. Hospice care is also a mandated benefit for insurance companies operating in the Bay State.
Those rules can be problematic when it comes to dealing with children. Diagnosing a child with a life-threatening illness is less precise than diagnosing an adult. And parents are reluctant to give up curative treatment for their children.
“Disease in general expresses differently in children,” said Ann Armstrong-Dailey, founding director and CEO of Children’s Hospice International, in a previous State Health Notes article. “Physicians are getting better at treating many of these children and prolonging their lives, yet they live with the possibility of a recurrence hanging over their heads.”
“It's much harder for parents and adults to deal with the death of a child who hasn't really had a chance to live versus an older person who has lived their life,” said Sen. Moore.
Tailored to Children
A growing number of states—including Florida and Colorado—have retooled their hospice benefits for children by using Section 1915 federal waivers. States may now also create child-specific hospice programs by amending their state Medicaid plans in accordance with the 2005 Deficit Reduction Act.
Florida and Colorado based their 1915 waivers on the “CHI PACC” model (Children’s Hospice International Program for All-inclusive Care for Children and Their Families) for children’s hospice. Developed by Children’s Hospice International, this approach eliminates the six month end-of-life prognosis, allows curative treatment to be continued; and enables the family to use the services of other providers.
The Massachusetts pediatric hospice program is like CHI PACC in that it does not require a six-month end-of-life prognosis, and curative treatment may be continued. But it is different from existing CHI PACC programs in that it does not rely on Medicaid, making the benefits available to all Massachusetts children without regards to income eligibility.
To qualify, children must be younger than 19 and have life-limiting illnesses—but they are not eligible if they receive benefits similar to those of the program under another insurer. The program will provide appropriate curative treatment, pain and symptom management, sibling counseling, spiritual care emergency services and bereavement counseling. A primary-care provider will coordinate care.
Massachusetts decided not to use Medicaid waivers like the other states because “we had done our own research before we saw the CHI PACC model,” said D. Rigney Cunningham, executive director of the Hospice & Palliative Care Federation of Massachusetts. Cunningham also noted that the idea already had many supporters in the Legislature, and that developing a state-only program would take must less time than going through the waiver process. “Money wasn’t a huge consideration,” added Cunningham, referring to the state’s decision to self-fund the program.
The state is using an $800,000 grant from the state Department of Public Health to fund the program in FY 2007, and Governor Deval Patrick has requested another $800,000 for FY 2008.
At least six other states are considering establishing children’s hospice care programs. Maryland enacted a law in April requiring the state to conduct a study on services for terminally ill children and on the feasibility of implementing a CHI PACC waiver. Last session, California enacted AB 1745, establishing a pilot project for children’s palliative care within Medi-Cal, the state’s Medicaid program.
© Copyright 2007, State Health Notes
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