A former UCSF nurse pioneers the Central Coast’s only home care provider for sick kids.

Longtime nurse Margy Mayfield has been committed to providing home care for terminally or chronically ill children since opening Coastal Kids Home Care in 2007. It’s the only agency providing palliative care and hospice services to low-income, dying kids in the tri-county (Santa Cruz, San Benito and Monterey) area, and a portion of Santa Clara County up to about Mountain View.

Commitment goes miles beyond nine-to-five and 40 hours for Mayfield: She worked without pay and took out a second mortgage on her home just to keep the Salinas agency’s doors open through its first three summers. Since Medi-Cal reimburses Coastal Kids patients about one-third of what it reimburses adults receiving the same services, the struggles are constant.

When did you know you wanted to do this?

I took a promotion as a transplant coordinator and got burned out – 24 hours a day, getting calls to arrange transplants. When I went into home care I didn’t think I’d like it, I just needed a change. But I grew to love it, seeing children in their jammies and in their own beds, eating homemade meals. When I moved to the Monterey area, I realized children were being sent to specialty hospitals up in San Francisco and Palo Alto. There aren’t any specialists in this area, so home care is huge here and I’m passionate about it. I don’t know what led me, but I feel very passionate about the children having services.

What’s one of the most difficult decisions you’ve had to make?

We run a palliative care program for the state and we weren’t getting paid appropriately, yet we were taking care of terminally-ill children. Last December, I put a freeze on the program and refused to take any more kids because [Medi-Cal] was so behind in their payments. It was painful, but over $110,000 was owed to us. We didn’t close down because there were so many kids already in the program. We didn’t take any new children for almost two months, which was hard. We finally got some payments and opened the program back up.

What obstacles do you deal with on a daily basis?

The entire home health and hospice world is set up for adults and Medicare – everything is geared toward elderly people. Every day, we’re battling to show that you can’t put kids on the same paperwork. Part of the reason we have trouble getting full reimbursement from Medi-Cal is because we have codes that aren’t used very often. Also, the reimbursement we get is far less than Medicare provides for the same service to someone 65 or older. I don’t think it’s intentional, it just slips through the cracks.

We have come a long way with Covered California and we’re good right now at providing our employees insurance coverage, but to put their children on the coverage is basically impossible. So kids are all on Medi-Cal and that’s why there are no services for them because Medi-Cal hasn’t raised their rates in 17 years. We get paid $74.11 to drive to somebody’s house and provide a nurse. $74.11 just doesn’t cover that. We are the only agency in Northern California that’s a pediatric-focused agency – there are agencies that’ll take kids but not Medi-Cal.

How’s the job directly impacted your personal life?

It’s been a 24-hour-a-day job from the beginning. It’s a passion for me, so on the one side, I can’t believe we’ve been open eight years and we’ve taken care of over 5,000 kids and made 30,000 visits. Personally, my house is almost foreclosed and it’s been a financial strain. There’s no 401(k) here, though we’re trying. There are no matching funds available. Those of us who work here, work here because of the difference we make in the quality of life that we have. As a mom, the one beautiful thing is, when I’m out in the field I can schedule patients around child-teacher conferences or plays or art shows. Working in a hospital, you’re locked in for the whole shift. But we’re making between $20 and $30 less per hour than hospital nurses.

During the darkest times how do you stay positive?

I have to touch base with the kids once in a while. The further you get away from seeing the children, being behind a desk and battling to get paid, it becomes a struggle. I have wonderful staff around me that are so supportive and we pick each other up. We have a great bond and we’re a great team. I’ve gone out to see patients, which is unheard of for a director, but we were down on staffing. It’s a reminder of why you’re here.

COASTAL KIDS HOMECARE is a participant in Monterey County Gives! 2014. For more information or to donate, visit www.mcgives.com