Emily had a rare form of cancer and the outlook was not good. She underwent two bone marrow transplants and still remained very sick.
Her family refused to give up hope, but they also wanted to give Emily a chance to die at home.
The Butterfly Program through The Children's Hospital gave Emily and her family that gift and much more. Counseling and spiritual guidance helped them many difficult days and grief services were provided for one year after Emily's death.
Laurie shared her story with the Colorado state legislators, testifying about the importance of palliative and hospice care for children and their families. Laurie believes every family facing a crisis like this should have these services, while their child is given treatment with the hope of finding a cure.
Her testimony helped make Colorado the first state to have a Medicaid waiver for this type of care. Applications are accepted at www.chcpf.state.co.us/.
Here is a summary of the legislation:
SB 04-206 Pediatric Hospice Waiver Bill Outline
(HOPEFUL Waiver)
• The legislation was brought forward because existing Medicaid hospice regulations are based on the needs and expectations of caring for elderly persons.
• Unfortunately, there are also children who also face life-threatening illnesses such as cancer or neurological disorders, or life-threatening injuries from abuse or motor vehicle crashes.
• For this reason, it is important to develop pediatric-specific palliative and hospice benefits that recognize the unique needs of children with potentially life-limiting illnesses or injuries and their families.
• This legislation directed the state Medicaid agency to develop a cost-neutral or cost-saving waiver application that would allow for a reorganization of the palliative and hospice care benefit and regulations for the pediatric population.
• This bill does not expand the Medicaid population; instead it provides the option of accessing pediatric- appropriate palliative and hospice care for children through age 18 facing a life-limiting illness or injury.
• Benefits include:
Skilled intermittent pediatric nursing and therapy services
Patient and family counseling
Pastoral support
Pain and symptom management
In-home intravenous medication management
Nutritional counseling
Bereavement services
• Cost savings are expected as a result of providing comprehensive, supportive care in the home and clinic setting thereby reducing time needed in an inpatient hospital setting. The bill also allows the Dept. of Health Care Policy & Financing the flexibility to use the data and information gathered in the waiver process to investigate cost-neutral or cost-saving improvements to the care of dying persons of all ages.
• Directs the department to consult with key stakeholders, including medical professionals and families who have experienced the death of a child, in developing the pediatric hospice provisions.
• The legislation allowed for a grant from the Butterfly Program (pediatric program operated by The Children's Hospital and Centura Health) to cover the staff time costs to the state Medicaid department associated with filling out the waiver application paperwork. The Butterfly Program has received a Congressional grant, with the help of Cong. Hefley and Sen. Allard, of which a portion was used for this purpose.
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