California voters will help settle a feud between Gov. Gavin Newsom and health care providers over how to spend the proceeds of a special tax on health insurance plans. Below, a mother of a child with complex care needs says her daughter and other California families will be cast aside under the measure’s spending plan. The opposing view: A community clinic founder argues that the measure will protect Medi-Cal funding and expand access. 

Analicia Brokloff is a Sacramento resident and a mother of two children, including 4-year- old Mila. 

I can still hear the doctor’s voice shake after he took my husband and I to a private room in the neonatal care unit and gave us the news about our daughter, Mila. 

“She has severe brain damage,” he told us. “We don’t know that she’s going to make it — and if she does, we won’t be able to tell you what her life is going to looklike.” 

That day I made a promise to her: Whatever future challenges came her way, I would work hard to make sure she lived a full, happy life. What I didn’t expect was just how hard it was going to be to live up to my promise and get her the assistance she needed. 

Mila has over 10 active diagnoses, including spastic quad cerebral palsy and intractable epilepsy. She has a tracheostomy, and depends on a ventilator at night and a feeding tube for all her nutritional needs. She takes medication every five hours and has eight she takes daily. I reposition her every two hours, suction her trach, prepare and administer medications, set up G-tube feedings and schedule appointments with all of her specialists. 

Private-duty nursing would dramatically help Mila and our family. It’s a Medi-Cal benefit that pays a nurse to come into the home to provide the medical care that my family and I provide now. But Medi-Cal rates are so low that PDN providers cannot afford to hire enough nurses to meet the needs of thousands of families like mine. 

The result is that families sit on waitlists and never get off them. 

A November ballot measure could make help for Mila and other Californians who need at home care even more out of reach. 

I am deeply fearful about the vacuum for home nurses that could be created if Proposition 35 becomes law. Not only does this initiative not fund private duty nursing when it goes into effect in 2027, but it would also eliminate a 2026 Medi-Cal increase lawmakers approved for PDNs in this year’s budget — in addition to other health care services, including continuous coverage for children under 5. 

After years of waiting, Mila might finally receive services in two years only to find them in jeopardy in 2027. Ultimately, this is what Prop. 35 does, creating winners and losers by making a tax on health insurance plans permanent and restricting what services receive funding. 

When Mila was first discharged from the hospital with her trach and ventilator, she returned about a month later. Even with the days of training we received from the hospital about how to care for her trach, we had never done it before nor had a nurse to guide us.

When I’m at work, Mila goes to her grandparents’ house with plastic bags full of pre-drawn seizure medications. She goes to their house with a feeding pump and bag of formula. 

I love and trust my parents, but truthfully I don’t have an alternative. They are not professionals. 

Mila has been on the waitlist for a home health nurse for almost two years now. I have called over and over to make sure she hasn’t been forgotten or fallen off the waitlist. Every time, I’ve been met with the same response: “I’m sorry, but we just don’t have anybody for you yet.” 

I cannot help but feel that the system has abandoned my family and abandoned Mila. There is absolutely no doubt that the lack of professional care led to the continued regression of her condition. We did everything we were supposed to do, but the lack of home nursing meant Mila had to regularly go into the hospital to get assessed and ended up admitted each time. 

As home nursing programs are continually underfunded and understaffed, families like ours are forced to take our children to the emergency room to receive basic medical care. After years of advocacy with the governor and legislature, this year’s state budget finally included a rate increase for private duty nurses and other services, although it does not go into effect until 2026. While we had hoped for immediate relief, I’m still grateful that the state recognized the need and value of PDNs and look forward to getting Mila and other children these essential services in the next year or two. 

A long ago I came to grips with the fact that there will always be uncertainty in the Medi-Cal system. If Prop. 35 passes, Mila and other children in need of home nurses will have to face that uncertainty. After years of waiting, a setback like that would be devastating.