California’s medically fragile children deserve to receive care at home

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OPINION – Colby, a developmentally disabled and medically fragile 10-year old, was finally deemed stable enough to leave the hospital and return home. Yet his family is unable to find any nursing help to allow him to stay at home safely, forcing his parents to juggle responsibilities for supporting Colby in the hospital while caring for Colby’s two siblings at home.

Children with acute disabilities and serious medical conditions thrive physically, emotionally, and developmentally when receiving care at home, surrounded by their families. While at-home care is better for the child and easier to manage for the families, it is also less expensive for the healthcare system. But many families in California are now struggling to get nursing care for these children, and the situation is getting worse.

Five years ago, state legislators recognized the value of caring for children at home and provided a substantial increase in payment rates for in-home nursing care under Medi-Cal to greatly improve access to the services families need to care for their children at home. However, increases in the cost of nursing services since then have made current payment rates uncompetitive. It means that families are unable to bring their medically fragile children home from the hospital, forcing some children to spend their first, second, and third birthdays in the hospital since their parents are unable to find in-home care.

This is unacceptable. If a child is eligible for in-home care under the Medi-Cal program, they should be able to receive it. Not to mention the impact that it has on the children themselves, whose oft-weakened immune systems are exposed to more illness in a hospital setting.

Making Medi-Cal rates for nursing care competitive again won’t result in costs to the state.  According to Medicaid claims data, caring for these children in a hospital or other institution is costing the state of upwards of $7000 per day. Meanwhile, the cost of care at home for these children averages only $662 per day. We studied the demand for nursing care and found that an increase in nursing service payment rates that would alleviate the current nursing shortage would save California at least $175 million dollars because children are now in the hospital rather than at home. Because current reimbursement rates for in-home nurses are not competitive, the shortage of nurses that results is driving a 3-fold increase in delayed discharges and hospital readmissions. A Medi-Cal rate increase of 40 percent for nurses will restore the competitiveness of rates and prevent over 700,000 extra days in the hospital annually.

Across California, there is a waiting list of more than 1,000 families looking for in-home nursing. Instead of bringing these children home, their families are forced to leave them in the hospital unnecessarily, occupying much-needed hospital beds, and costing California enormous sums of money in subsidizing this care.

Ultimately, a 40% increase in the rate would expand the supply of private duty nurses, reduce the waiting list, and save the state hundreds of millions of dollars per year. Simply put, the more children that can be safely cared for at home rather than in a hospital, the better it is for the child, the family, and the State of California.

It’s an easy vote.

David Maxwell-Jolly, PhD, MPH, MA, Senior Advisor at California Health Policy Strategies and Dean Chalios, President & Chief Executive Officer of the California Association for Health Services at Home (CAHSAH)

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