Gus Byrne is 9 years old, and he’s curious about everything. He loves technology, trains and airplanes. And he doesn’t let his autism, muscular dystrophy or Type 1 diabetes slow him down.
But his parents, Bob and Adriana Byrne, have had a hard time keeping up. Gus’s glucose levels can drop or spike suddenly, sometimes without any symptoms. Adriana Byrne must go to school with him and watch his monitor at all times.
“It’s hard to find somebody who can care for [him] at the home and be confident that they’ll do a good job,” she said. “We sleep in chunks of three hours, because we have an alarm to check him.”
The family is approved for at-home nursing through Medi-Cal, but Adriana Byrne said that whenever she calls the state-recommended home care agencies, they say no one is available in her area, Cameron Park. Gus requires a licensed nurse — not just a respite worker — which makes it even harder.
It’s a struggle that hundreds of parents are dealing with across the state, according to Will Leiner, an attorney with Disability Rights California. The nonprofit, along with the National Health Law Program and the Western Center for Law and Poverty, will represent families in a federal class-action lawsuit against the Department of Health Care Services, which oversees Medi-Cal.
“They’re asking the court to tell the state to do a better job of arranging for nursing care, by actively helping them recruit and keep nurses,” Leiner said. “And the state also needs to do a better job to identify and monitor children who are not getting the services that they need.”
The families filing the lawsuit are not asking for compensation, they just want to see change, Leiner said.
The problem is tied to a statewide nursing shortage and low Medi-Cal reimbursement rates. A 2015 study from health care analytics firm Leavitt Partners found that, while demand for nurses in Medi-Cal is growing, the workforce supply remains the same. Sixty percent of home health agencies that treat Medi-Cal patients provide less than a quarter of the hours needed, according to the report.
Adriana Byrne said that she had home nurses at least some of the time until about two years ago. When one was available, she and her husband slept through the night, and were even able to go out once in a while. Andriana Byrne attended Bible study and went to support groups for other parents of children with disabilities. But right now, Gus is a full-time job.
“Sometimes you are isolated because you cannot leave,” Byrne said. “You have to find care for the child. And you can’t.”