While there are many agencies that provide in-home help for adults with temporary, chronic and terminal illnesses, Margy Mayfield saw a gap in those services for children on the Central Coast. In the seven years since Coastal Kids Home Care was founded in Salinas, Mayfield said she still sees a too few services for children.

“You are making such a difference and impact,” she said. “The relationship with families is so intense and really close.”

When Mayfield moved to Carmel with her husband, she worked for a visiting nurses’ association providing pediatric care, but she said the agency kept cutting funding to children’s services.

“It was smaller and smaller because it was so expensive for them,” Mayfield said. “It’s hard to hear all the time – kids are too expensive.”

She said when she started working in home health in the early 1990s, there were “pediatric programs everywhere. We had nine offices with the company I supervised” around the Bay Area.

She and a partner decided to start Coastal Kids to dedicate themselves to offering all the services children might need at home, from helping new parents with complications from a premature birth to children requiring palliative care for a terminal illness. Since starting the company in 2005, they offer services in Monterey, San Benito and Santa Cruz counties, and are in the process of extending services into Santa Clara County. They serve 500 to 600 families annually and make about 4,500 patient visits.

“We do everything that an adult homecare agency would do,” Mayfield said.

When Lyla Hernandez was diagnosed with leukemia at the age of 2, she was admitted to Stanford Hospital for 18 days. Social workers put her mother Noemi Zavala in touch with Coastal Kids.

“We were not even home and I got a call about setting up an appointment – introducing themselves,” Zavala said. “It was one less thing to worry about when we got home.”

The local care saved the family weekly trips to Stanford’s Lucile Packard Children’s Hospital for blood draws, something Zavala said other families she met didn’t have. Zavala said more than helping with regular blood work, the nurses offered a sense of security for her family.

“If she had a cough or cold, they could recommend if we should call the doctor or if it wasn’t serious,” Zavala said. “They could assess it for us.”

Lyla has been in remission for two years. When doctors took her off therapy five months ago, she stopped seeing the Coastal Kids nurses for the first time since she was diagnosed more than two years and four months ago.

“They were familiar faces who helped her with her nervousness and anxiety,” Zavala said, of seeing the same three or four nurses. “They worry about you. They are there to help with anything they can. They not only do the lab work, but really personally get really involved. They have a lot of knowledge.”

The services provided to families can range from help with administering IV fluids or injections at home all the way up to spending time with a terminally ill child in the last few hours of life. Mayfield said the need for skilled in-home help has increased in the last 20 years as hospital stays are shortened to keep costs down.

“There is a joy at being at home and there is really a push to get out of the hospitals,” Mayfield said,” But once they are at home, to give a needle without a nurse, there is a terror.”

Mayfield’s agency continues to spend more than they bring in, largely due to the reimbursement rate they receive for Medi-Cal patients. Mayfield said her agency receives $74.11 per patient visit. She said the rate has not been increased in 14 years, and in fact, was cut two years ago.

“It is supposed to cover the nurse’s time to go to patients’ homes, provide what is needed and to come back to the office to chart,” she said, adding that it should also cover workmen’s compensation and insurance liability. “Medi-Cal is about a $60 shortfall for every visit we do. That’s where grant funding, donors and individuals support us.”

In contrast, the routine hospice care Medicare reimbursement rate for 2011-12 was $146.63 per day, according to the Centers for Medicare and Medicaid Services.

“For private insurance families pre-authorization has to be [received,] and we do have issues getting it approved,” Mayfield said. “We have to have doctors’ orders and they will back us up. Some do have significant co-pays so we do work with families on that. We don’t feel they should be penalized for that.”

Zavala said her insurance covered 100 percent of the charges to Coastal Kids and she never had to deal with a bill, since Mayfield’s staff worked directly with the insurance provider.

One of the key ways Coastal Kids Home Care balances the budget is through grants from different agencies. In June, the group was awarded a Futer Essential Human Services grant from the Community Foundation for Monterey County. The award of $150,000 will allow them to reach more people and to start a donor engagement campaign to increase funds. For the last two years, Coastal Kids has also been part of The Pediatric Collaborative, which received a grant of $277,950 this year from Hospice Foundation. Working with Jacob’s Heart Children’s Cancer Support Services and Children’s Hospice and Palliative Care Coalition, the grant helps provide hospice and palliative care to children.

Mayfield said initially her staff nurses planned to provide care for the children during most stages of their illnesses, and then transfer them to other agencies for palliative care or hospice.
“But we had families say, ‘You can’t leave now. You’ve been our nurse for three years,’” Mayfield said. “That’s how we got pulled into that realm.”

Jennifer Pettley, the director of communications for Hospice Foundation, said the collaboration between the three agencies helps to keep families close to home.

Pettley said in 2006, a state assembly bill was passed that allowed parents to accept palliative care and treatment for illnesses at the same time and to receive reimbursement for the services.

“Parents may have avoided it before because of the parameters of hospice,” Pettley said. “Now they still receive curative measures.”

Mayfield agreed that the term hospice scares parents.

“They always have hope of a cure – they are living for that miracle,” Mayfield said. “Hospice scares parents to death. But when they come to home health, they don’t know they are getting palliative care. We hope everyday that something happens to be able to cure the children. It’s a great mindset to feel they are not sent to a program because everyone has given up.”

Mayfield said she is hopeful that national healthcare reform, upheld by the Supreme Court in June, will only open up in-home health care to more children in need of services.

“Kids are a lot of the population that don’t have coverage,” she said. “It is a phenomenal thing for children – moving toward universal coverage and equaling out the fees. It shouldn’t matter whether it is children or geriatric patients. The person providing the service should be paid the same.”