Proposition 35 would have devastating impact on my brain-damaged daughter

Editor’s Note: An essay offering another perspective on Proposition 35 will be published on this website Sunday morning.

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

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

That day, I made her a promise: no matter what challenges lay ahead, I would work hard to ensure she had a full and happy life. I didn’t expect it to be so difficult to keep my promise and provide her with the help she needed.

Mila has over 10 active diagnoses, including spastic cerebral palsy and refractory epilepsy. She has a tracheostomy and relies on a ventilator at night and a feeding tube for all of her nutritional needs. She takes medications every five hours and eight a day. I reposition her every two hours, suction her trachea, prepare and administer medications, place gastric tubes, and schedule appointments with all of her specialists.

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

The result is that families remain on waiting lists and never get off them.

A ballot measure in November could make help for Mila and other Californians who need home care even more inaccessible.

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

After years of waiting, Mila could finally receive services in two years, only to find them in jeopardy in 2027. Ultimately, that’s what Proposition 35 does, creating winners and losers by making a tax on health insurance plans permanent and limiting which services receive funding.

When Mila was discharged from the hospital with her tracheostomy and ventilator, she came back about a month later. Despite the days of training we received at the hospital on how to care for her tracheostomy, we had never done it before and we had not had a nurse to guide us.

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

I love my parents and trust them, but honestly, I have no other choice. They are not professionals.

Mila has been on the waiting list for a home health nurse for almost two years now. I have called several times to make sure she hasn’t been forgotten or taken off the waiting list. Each time, I have gotten the same response: “I’m sorry, but we don’t have anyone for you at this time.”

I can’t help but feel that the system has failed my family and Mila. There is no doubt that the lack of professional care has led to her continued decline. We did everything we were supposed to do, but the lack of home nursing care meant that Mila had to go to the hospital regularly for assessments and ended up being admitted each time.

With home nursing programs continually underfunded and understaffed, families like ours are forced to take their children to the emergency room to receive basic medical care. After years of advocating with the governor and legislature, this year’s state budget finally included a rate increase for private duty nurses and other services, though it doesn’t go into effect until 2026. While we were hoping for immediate relief, I am still grateful that the state has recognized the need and value of PDNs and look forward to providing Mila and other children with these critical services in the next year or two.

I have long understood that there will always be some uncertainty in the Medi-Cal system. If Proposition 35 passes, Mila and other children who need home health nurses will have to face that uncertainty. After years of waiting, such a setback would be devastating.

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