Having a seriously ill child is a challenge many can’t imagine, said state Sen. Laura Fine, D-Glenview, a mother of two.
After talking to families of critically ill children and health care professionals who care for them, Fine became convinced of the need for in-home, pediatric palliative care services.
Taking action, Fine introduced and sponsored the Pediatric Palliative Care Bill, Senate Bill 2384, which has passed the Illinois General Assembly and is on Gov. J.B. Pritzker’s desk.
The bill provides a pediatric-focused reimbursement structure so that healthcare providers can recommend palliative services to parents and guardians, knowing that the families will not have to incur additional costs.
“With this legislation, there is a way to get a federal match (for palliative services). It is not going to be a burden on the state. And it is going to take a burden off of the families,” Fine said.
Fine says that palliative care workers are a vital part of the process for families.
“They bring the services to your home and they work with every member of the family. They work with you on how to deal with the situation – what makes things easier…and how you can find help and seek support,” Fine said.
Talking to one mother who had two of her children die…one after the other…from a terminal illness really brought the need home for Fine. One of the woman’s children had a palliative care team during her illness and the other did not.
“The mother explained, as only a mom could, about the difference this made in her family’s life. It really made an impact on me,” Fine said.
The goal of palliative care is to give the child and the family an optimal quality of life as the child goes through treatment.
Palliative care is a range of specialized care services for seriously ill patients that is focused on alleviating pain and other symptoms and minimizing stress. A specially-trained team of doctors, nurses and others work together with the patient’s existing doctors – visiting the family in their home.
The effort to make palliative care services reimbursable by utilizing matching funds for Medicaid-certified providers is an effort that has been in process for more than ten years, Kristen James, executive director of the Greater Illinois Pediatric Palliative Care Coalition (GIPPCC), told Hospice News.
Doctors and other health care providers have been reluctant to recommend palliative care services to families because of reimbursement issues. James met with Fine to encourage her to sponsor the legislation.
Fine relied on James and other advocates as she worked on the nuts and bolts of the bill, Fine said.
Advocates say palliative care services reduce hospitalizations and cut down on medical costs.
Patients up to the age of 21 years old will be eligible for palliative services if a physician diagnoses them as having “a serious illness.”
“A lot of parents don’t know how to reach out for pediatric palliative care,” Fine said. “Because it is something that will now be covered, it can now be recommended to these families,” she said.
The bill is on Gov. J.B. Prtizker’s desk awaiting his signature.
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