Sacramento, CA – Thousands of children in California who have severe and complex health needs and who qualify for nursing care in their homes, sit on waiting lists, remain in hospitals or endure repeated trips to Emergency Rooms, because California has a dramatic shortage of home health agencies who accept Medi-Cal. In addition, there is a severe lack of qualified medical staff because reimbursement rates for pediatric in-home care nurses are shockingly low. Yet, the State Department of Health Care Services continues to say there are no access to care issues while a crisis is taking hold in California households.

These children – some of the sickest in the state - have challenging heart conditions, traumatic brain injuries or other complex medical issues. Many need feeding tubes and ventilators or other life-sustaining equipment and most have to live their lives in hospital beds due to the lack of state resources. There is an alternative: They can be safely discharged, with medical plans in place, to live comfortably at home under the watchful eye and care of pediatric in-home nurses.

Working with thousands of families, doctors, nurses, hospitals and home health agencies, Senator Mike McGuire (D-Healdsburg) has introduced legislation that would launch a pilot program to increase reimbursement rates for in-home nursing care for children with severe and complex health needs.

“We know in-home nursing offers superior care for these kids and it’s unconscionable that the Department of Health Care Services refuses to provide this mandated federal medical program, let alone acknowledge that there’s a problem,” Senator McGuire said. “Quite frankly, in-home nursing is also a more cost effective way to provide care – it costs 10 times more each day to care for a child in a hospital, than it does to care for that child at home.”

However, out-of-date reimbursement rates and difficulty recruiting nurses with a unique combination of skills have resulted in waiting lists for these families that can last for years and in some counties, leaves children with no in-home pediatric care options. In fact, rates for in-home pediatric nursing care in California have not increased for 15 years, and have actually even been reduced by 1 percent in 2009.

SB 1401 would create a 3-year pilot program for a targeted 20 percent Medi-Cal rate increase in three regional areas which are facing especially acute access to care challenges – The County of Los Angeles, the nine Bay Area counties and eight Central Valley counties. 

In Los Angeles County, there are approximately 600 children who qualify for in-home pediatric nursing care. It is estimated that 50 to 60 percent of those children are not receiving the care they qualify for. In many cases, parents quit their jobs or even move across the state to find adequate in-home nursing care.

Supporting this bill are organizations such as the American Academy of Pediatrics, the California Children’s Hospital Association and the Children’s Specialty Care Coalition along with Oakland Children’s Hospital. 

However, the state Department of Health Care Services denies there is an access to care problem for these families, and denies there are waiting lists, all the while families struggle with little or no support and hospitals struggle to find qualified nursing care so their patients can be discharged.

Dr. Daniel Karlin, a pediatric physician at UCLA in Los Angeles said he sees over and over again family disruption and unnecessary hospitalizations that come from the inaccessibility to quality in-home health services for kids. Dr. Karlin also notes caring for these kids who are often forced to stay hospitalized much longer than medically necessary is, “an exponentially more expensive way to practice care within pediatrics.”

“What I have seen is when we give quality care to children within their home environment, they do better,” Dr. Karlin said. “It keeps families whole and allows children to be children.”

In fact, the State of Washington Medicaid Department estimated that a day of care in the hospital for such a patient is over $5,000, while a day with a nurse in the patient’s home is approximately ten times less or $500 per day. In California, even higher savings are anticipated.

Joanne Kuller, a clinical nurse specialist in neonatal intensive care at Children’s Hospital in Oakland, said she sees an increasing number of children who aren’t receiving the in-home nursing care they qualify for. 

“We are unable to find the home nurses for these children, the list is extremely long,” Kuller told the Senate Health Committee. “There are not nurses who are taking jobs with these home health agencies because the pay at hospitals is much higher. It’s a continual crisis, and a real problem for our families.”

Liz Heflin from Sonoma County, whose daughter suffers from epilepsy resulting in frequent grand mal seizures, testified to the Senate Health Committee last week that her daughter Kaitlyn qualifies for 16 hours a day of skilled nursing care at home. She receives none – because there is a waiting list to access pediatric in-home nurses in her county, despite this service being a federal mandate.

“It doesn’t matter if it’s a weekend, a holiday, or even her birthday – every day we embrace her medical needs and that has become our reality. I can’t take a day off, have a sick day or get too tired. As Kaitlyn’s sole provider and only caregiver, it all falls on me. I am her mom and I will always take care of her, but the reality is that 24/7 care is all consuming and we need help,” Heflin said.

Senator McGuire’s legislation was unanimously approved in the Senate Health Committee April 13 and will be heard next in Senate Appropriations.

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